The Legend of Thousand Hills Farm

WIFD day 7

2011-07-30T19:16:00.000-07:00

Today's the last day of WIFD. It was very hot here...for North Idaho. It's in the 90's, and since I'm pregnant, I was wilting. So, most of the day was spent inside...doing a bit of laundry, cleaning a cupboard that I 'inherited' from our church ~ which will be home to my fabric stash, and playing with the baby...hate that! ;-)

Today I wore a Style and Co. skirt. It's not maternity, but it has an elastic smocked waist, so it works! I had thought maybe I would wear one of my other skirts that is similar this week, but I haven't. However, I will share that one of my newest, easiest maternity skirt modifications is to take a sundress, that has the empire waist that is elastic smocked, and cut the top off. They make a nice, modest skirt, and the elastic smocking is perfect for a maternity waist band...and I'll be able to wear them when I'm not pregnant too!

I also wore a brown crinkle camisole that I bought at WalMart, and a white gauze Motherhood top that was thrifted. Just some flip flops on my feet...and no jewelry today.

Not a great picture of my outfit, but you can see the skirt pretty well. I just had my hair twisted and in a claw so it was up off my neck. :-)

WIFD day 6

2011-07-29T21:57:00.000-07:00

Today was a laid back day at home. I worked on laundry a bit...I'm getting to the point in this pregnancy where I can't do a lot at once. Sore hips and pelvis and a good sized baby equaling a sore back...I do a bit and I sit. I do a bit and I sit. Very frustrating. Thankfully, I have an understanding husband, and he encourages me to do what I can, and he helps with the rest.

My outfit today was a beautiful brown and turquoise Liz Lange Maternity top that I just bought off eBay. It's not particularly modest, so I wore a brown Old Navy tank top under it. My denim skirt is a Faded Glory skirt that I modified for maternity wear. Just as a side note, I've had a terrible time finding denim skirts this pregnancy! Of course, I lost almost all my maternity clothes in the fire. Most of the new denim maternity skirts I find are mini skirts...and I'm just not interested in those. Even on eBay most used denim maternity skirts that are long enough to be modest go for $30 or more by the time you pay shipping. And on principle, I'm just not going to pay that much for a used skirt. You would think though, that clothing manufacturers would pay attention to the used clothing market, and pay attention to what is selling well there.

The length of the skirt is shorter, although below knee length. It's just a nice, summer length denim skirt.

Just for fun, here is a picture of our calf, Eliza. She is fascinated by fire!

Here's a better shot of the front of my top. It's very flowy and feminine looking. The neclace is thrifted, and although you can't really see my cute teapot earrings, they are from an etsy shop.

WIFD days 4 and 5

2011-07-28T20:34:00.000-07:00

I missed posting yesterday! Mike was gone most of the day, and by the time he got home and took my picture, I was too tired to mess with posting. :-)

Yesterday was an at-home day ~ Yay!! Wednesday afternoons Jethro's physical therapist comes to the house, so usually the morning is spent getting things tidy and ready for his PT.

I wore a brown and white floral motherhood shirt ~ thrifted, a navy Down East Basics skirt (not maternity, but it's a nice stretchy knit!) ~ thrifted, flip flops from Fred Meyer, and my necklace is from WalMart.

Ezra decided to pose with me. :-) He was just in from playing in the hot tub (which is basically a small swimming pool at this point ~ no heat!)

Today, I wore the blue skirt again, but with a yellow plaid Old Navy top ~ thrifted. Just another day at home, trying to get some laundry done.

Sorry for the quality of the picture. I decided to do a self-portrait instead of asking someone to take my picture.

It's hard to see in this photo, but the top has a button placket, and pin tucks on either side, down to the empire waist. And, just little flutter sleeves.

A Child's Bible Study Review

2011-07-28T09:57:00.000-07:00

There will be a post later today for WIFD. :-) This is a long-overdue post...a quick review of a children's Bible study on the armor of God. It is produced by Quiet Times for Kids. I will post a more thorough review of this Bible study after we have completed it.

One of the things that drew me to this Bible study is that it encorporates Lego dioramas. In fact, if you order this Bible study from them now, your child can get in on a photo contest of the dioramas for a chance to win a building block set from Vision Forum. The photos must be submitted by August 31, 2011, so if you or your child is interested, go get this study!

This is a 6 week study on the armor of God. I spent some time this morning working through week 1 ~ even as an adult, I found some of the questions to be challenging to my thinking. The study is designed for individual study, helping young people develop a habit of daily time in the Word. There are projects for some of the days. Each week a cube is built for the piece of armor being studied and a Lego diorama is worked on. It's designed to be done 5 days a week, so it would fit in well with a school schedule. We will be starting it on Monday, when we start our new school year.

So far, the only "complaint" I would have, and it's not a big deal is that they have Ephesians 6:10-18 printed out on Scripture cards, designed for your child to cut out and put on their wall. They have used 4 different versions for this. KJV, NASB, NKJV, and NIV. At our house, we use the ESV. Not a problem, I'll just print it out on our computer in our version. :-) And, they can't really cover every version of the Scriptures.

So, while we have not gone through it yet, I believe it looks like it will be a good study, generating conversations with the children, providing fun with the projects, growth in the walk with the Lord...and I would encourage you to click on the link above and check it out!

WIFD day 3

2011-07-26T13:16:00.000-07:00

So, today is just a day at home. I need to get some laundry done, organize the school room (or at least start!), and get working on supper. I have a webinar this evening, so I need to have supper stuff ready to go before the webinar starts.

It's a little cooler here today, and the house tends to stay nice and cool ~ almost chilly if we have left the windows open over night. So I have on long sleeves.

I am wearing a grey Motherhood hoodie with a deep v-neck ~ thrifted, a lapis blue tank...I think it's Old Navy ~ thrifted, and a denim and floral Motherhood skirt ~ also thrifted. Just flip flops for shoes. For jewelry, I am wearing a lapis blue pendant that belonged to my great aunt Olga. One of the few pieces of jewelry left that I inherited from her. It's a favorite, so I had it at the hospital with me when the house burned. I am also wearing heart shaped earrings with blue handpainted roses on them ~ yep, you guessed it, they are thrifted as well. :-)

The skirt is a bit longer than knee length and it's tiered.

Here is a closeup of the pendant.

A Week in Feminine Dress

2011-07-25T11:18:00.000-07:00

So, I have at least one more post rattlin' around in my head on suffering, but this week, I'm going to be posting what I am wearing. :-) I have been a member of the forum over at Sense and Sensibility Patterns for several years. At least a couple times a year, we do a week in feminine dress or a WIFD. The point of it is to encourage the ladies to dress in a feminine manner no matter what we are doing, and to give new ideas and inspiration to those of us who regularly dress this way. I have done this a couple times before here on the blog, but it's been a while, so I thought it would be fun to do once again. Today is actually Day 2 of WIFD, but in normal fashion, I completely forgot about it yesterday, until after I was changed out of my church clothes...and I really wan't dressed very femininely after that. :-)

So, here is todays outfit:

I am wearing a thrifted Motherwear sundress. I don't normally wear dresses that are only knee length, but I have been having a terrible time finding maternity sundresses this year, let alone ones that are a length that I would normally wear. I love it though because of all the bright colors. The necklace came from Burlington Coat Factory, and the earrings are from WalMart. I'm just wearing flip flops on my feet.

Isn't he just the cutest? I couldn't resist having my picture taken with him...he's such a HAM! LOL Tomorrow he will be 17 mo. old. The Lord has truly been good to us. :-)

Today's plans involve going to town and picking up a few groceries. I'm also going to be getting some rock and hopefully a few plants to put down at Tucker's grave. I'll also pick up balloons for the children to release this evening, in memory of our dear Tucker. He would have been 7 today.

Happy birthday, dear Tucker!

Enjoy your birthday in Heaven ~

Play in peace my sweet boy.

Mama loves and misses you.

Suffering Part 3 ~ BFS for the Soul

2011-06-24T17:07:00.000-07:00

Not too long ago, I was listening to Chris Fabry Live. He had a couple on who had gone through some very hard circumstances. As he was talking, giving the introduction, Mr. Fabry likened suffering to football. Often we feel like it's one thing upon another. Much like a football player who is carrying the ball, and then is tackled...he usually isn't tackled by just one player, but once he is down, player upon player jumps on top of him. This analogy got me to thinking about the BFS program, that our local school uses for their athletes. The 'BFS' stands for Bigger, Faster, Stronger. It's a strengthening program that utilizes weight-lifting, plyometrics (jumping), strength and agility training. The motto for BFS is "Be an 11". They encourage the kids to give their utmost. Don't be satisfied with being a 10, be an 11. Give it your all.

The first year our school implemented the BFS program, we saw a huge improvement in our second oldest's football game. He was the main running back for our team, so he ended up with the ball a lot. During one play of a home game, he had several guys try to tackle him, but he just kept running. I think he ended up with about 5 guys hanging on, and Levi just drug them down the field, on his way to a touchdown.

So, how does this relate to suffering? Well, if suffering is the guy trying to tackle you and take you down, then if you have been involved in a 'strengthening' program for your faith, it will be more difficult. We often want easy answers. Just give me a list to follow. Tell me the secret. Hand me the key to live victoriously. But you know what? There isn't an easy answer to faith. It's a gift from God, most assuredly, but it's also work. You have to exercise it. You have to spend time in God's word, getting to know it and Him better. You have to put forth the effort.

Levi didn't get strong enough to drag those guys down the field by wishing he were stronger. He had to get to the gym everyday and do the workout. It took determination and commitment on his part. He had to follow the program. Our faith isn't strengthened by us wishing we had stronger faith. We have to have the commitment to be in the Word and know God more intimately for our faith to be strengthened. When we enter into suffering ~ and we all will ~ we have to determine to keep our eyes uplifted and *trust* God to do what is in our best interests. But, that will be easier if we have put in our time in the 'gym' of Scripture.

Breaking those tackles wasn't easy. Levi still felt the full weight of those guys hanging onto him as he ran down the field, but, because he was strong, he was able to keep going. The play didn't end with one guy jumping on him. He wasn't sidelined by an injury. He. Kept. Going. He moved forward, keeping his eye on the prize. For him, that prize was yards gained, and ultimately a touchdown. For us, we run toward a much greater prize. We run toward Christ-likeness. We run toward glorifying God. We run toward a glorious eternity.

I don't believe we should look for suffering, but I do believe that we should see the value in it. The opportunity to 'flex' our faith muscle, and grow in grace. Suffering is going to come, will you 'be an 11"?

Suffering, Part 2

2011-06-17T14:10:00.000-07:00

Seven years ago, we were joyfully anticipating the birth of our seventh child. In mid-June, I began bleeding one night, and so we headed to the hospital. After a pretty extensive ultrasound, they determined that everything was okay with our son and they didn't know why I was bleeding. After about 14 hours at the hospital, the bleeding stopped and I was sent home on bedrest for the week.

Late at night, on the 24th of July, I went into labor. We called my mom and asked her to come and get the younger children ~ the older boys were already at her house. We were overjoyed that this child would share his birthday with his Grammie.

The midwives were called and arrived and we settled in to wait for his arrival. I slept until about 4 am or so and woke up ready to have a baby. He was very active all through labor, and his heart tones were good. Everything was progressing very normally for one of my labors. I was laying on my side, laboring, looking out the window, thinking what a gorgeous day it was and knowing it would only be a short time before I would be holding my newest son in my arms.

Once I began to push, I felt being on my side was not productive, so Mike and the midwives helped me get upright on the birthing stool. As soon as I was upright, my midwife saw a lot of 'suspicious' blood and told me I needed to push and deliver him quickly. When his body was delivered, the cord hit my leg. Not realizing the gravity of the situation, I said, "The cord broke". At which point, the midwives began doing CPR. Mike called 911 and requested the life flight. And then we began to call friends and family, asking them to pray for a miracle ~ and we pled with God for our son's life.

It was not to be. Our midwives performed CPR for 45 minutes before the life flight crew arrived and took over. But his cord had broke at some point after he had entered the birth canal and he had bled to death before he was delivered. In the blinking of an eye, we had gone from laboring with a live baby to delivering a dead one. From the joy of a new life to the heart-shattering grief of the loss of a child. In a moment, with no real preparation (is there such a thing?), we were thrown onto the hardest path a parent can walk.

From the very first moments, Mike and I determined that our grief would drive us to God and that it would not drive us apart. As that first day progressed and we were finally alone, we began a practice that I believe enabled us to keep our heads above water. We actively looked for things within our circumstances to praise God. We were very blessed to be surrounded by folks who loved us and continually pointed us back to our Heavenly Father, reminding us constantly of His great love for us.

People would ask, "Why?" And I would answer, "Why not?" Who was I to be spared suffering? I don't have the words to adequately share my thoughts without perhaps giving the impression that my grief was not deep and overwhelming. Let me assure you, it was. I spent many days barely able to rise from my chair and many, many nights my pillow was soaked from crying myself to sleep. I carried within me a physical ache, that I truly believed would have killed me had it not been for my faith in Christ. Although my heart was broken and my arms ached to hold my son, I never really felt that Tucker's death was unfair. For me ~ perhaps. But not for him. I never looked at it as if he had died 'too soon', or 'too young'.

Psalm 139 says, "Your eyes saw my unformed substance; in Your book were written, every one of them, the days that were formed for me, when as yet there were none of them." v.16

Tucker lived out every day God had ordained for him. His life was not cut short, it was lived just as fully as someone who we would consider had lived a long, full life. And God showed great mercy to Tucker. He leapt from the warmth and safety of my womb into the waiting arms of Jesus. He never knew or will know pain and sorrow, sickness, or sin. As we grieved the death of our precious son, he was in the presence of the Savior, living life more fully than I can even imagine!

I took great comfort in knowing that God knows what it is to grieve the loss of a child. We live in a world marred by sin. The immediate consequence of sin was death. We still live with that consequence today ~ each of us is born dieing. Each of us is born spiritually dead. God has grieved much over the loss of life and He is able to draw us close as we grieve and bring peace and joy to our hearts and lives once again.

God did not allow me to wallow in my grief. We had a houseful of children who needed me (what a blessing that was!), and within a few months of Tucker's death, God began to bring other grieving Mamas into my path. It was not an easy thing to do. Each time I heard of a baby or child dieing, emotionally I would be back at the morning we lost Tucker. But I found that as I reached out to other Mamas just beginning their grief journey, I was less focused on me and I was 'giving' purpose to Tucker's life and my own grief. While I certainly hoped and prayed that I was a blessing to them, the truth was that they were a huge blessing to me. To be able to reach out, to make 'use' of my own suffering ~ to be able to offer comfort to others out of that suffering, brought healing to my own heart.

"Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God."

2 Corinthians 1:3-4

"Blessed are those who mourn, for they shall be comforted."

Matthew 5:4

There is blessing in suffering, in mourning ~ God will comfort us. And then, as we take the comfort we have received from Him and in turn comfort others, we are again blessed.

I do want to point out that I did not just commisserate with these grieving Mamas. There is no comfort ~ for anyone ~ in that. I came alongside with compassion. I grieved with them, because I knew what it was to have my life shattered by the death of a child. And I did my best to glorify God and gently point them back toward their Heavenly Father. To remind them of His great love for them. This is where true comfort and blessing comes from. We will never find comfort and peace apart from God.

Suffering, Pt. 1

2011-06-11T11:37:00.000-07:00

"And after you have suffered a little while, the God of all grace, who has called you to His eternal glory in Christ, will Himself restore, confirm, strengthen, and establish you."

1 Peter 5:10

In our nearly 22 years of marriage, God has brought us through many trials. Some, in retrospect weren't that traumatic or significant, and others were definitely traumatic and life changing.

We have lost four children to miscarriage, buried a stillborn son, had a son born dead (but thankfully revived!) with a severe - read: incompatible with life - heart defect, lost our home and belongings in a house fire while our youngest was in the hospital recovering from open heart surgery, and gone through over 2 years of un/under-employment for my husband. That would be the 'short list' of traumatic and life changing.

As you might imagine, I have given some thought to the topic of suffering. We live in a society that shuns suffering and tends to shun the sufferer. While we have certainly been shown a lot of love and care during our various trials, we have also experienced (and observed in the lives of others) abandonment during suffering.

We don't like to suffer. It's uncomfortable, difficult, unknown, and very often, lonely. Suffering lays bare our deepest beliefs, and, depending on what they are, either sets us adrift or anchors us more firmly. Suffering can bring us to misery and ruin, or suffering can be the catalyst for great growth, maturing and joy.

Wherein lies the difference? How can we know which direction we will go when faced with a trial? It all depends on where (or on Whom) our faith and trust is placed. But faith alone is not enough. If our faith is not placed in the God of the Bible, the Creator God of the universe, then our faith will leave us flailing. Even then, faith without knowledge can still be of little help. If we don't know anything about the One in whom we place our trust, how can we really trust Him?

I believe a major problem within the church today is a lack of knowledge/relationship with our Father God. We say a lot of things about Him, which are true, but we don't know Him or His word well enough to actually believe those things.

We say, "God is trustworthy." And yet we live like He's just waiting to grind us under His thumb.
We say, "God is faithful." But we live like He is fickle.
We say, "God is my provider." Yet we live like the providing is all up to us.
We say, "He will never leave us nor forsake us." Yet we live as if His presence is non-existent in our lives.

We say a lot of things that would 'prove' our faith, and yet we live our lives out practically as athiests.

Why don't we trust the One who created us? Who thought about us and our lives before time began? The One who numbers the very hairs on our head and who, according to Psalm 56, keeps count of our tossings, and puts our tears in a bottle, keeping record of them? Do you know what that means? God knows each tear you have cried and remembers what it was about. Do you? I know I don't remember every tear I've cried, but God does. That is how important you are to Him.

Again, I ask, how can we trust someone we don't know? We can't. Not really. Until we have at the very least observed their actions, it is difficult to trust someone. If we observe them from afar, we might determine that a person is likely to be trustworthy or not (think: political leaders). If we are able to more closely observe someone and hear personal testimony of their character from someone we know, then we might determine that a person is true to their friends and those they come into contact with (think: a friend of a friend). If we are in relationship with someone, spend time with them and those that know them, then we know if they are trustworthy or not. We have personal, intimate knowledge of that person. Think about it ~ within your circle of friends and acquaintances, you know who you could call in an emergency and who you wouldn't think to call. Where my analogy falls flat is that at some point, every human, no matter how trustworthy, no matter how close your relationship, will fail you. It's inevitable. However, God will not. God never fails.

Let me finish this with this thought. Suffering in our lives is not failure on God's part. If we are suffering, it does not mean that God was taken by surprise, or that He somehow dropped the ball. God will have our lives glorify Him. God is interested in molding us into the image of His son, Jesus Christ. This just does not happen without suffering.

"He was despised and rejected by men; a man of sorrows, and acquainted with grief; and as one from whom men hide their faces he was despised, and we esteemed him not."

Isaiah 53:3

I have also posted some thoughts on how this affects us as wives over on my marriage blog, Beneath Beams of Cedar

Here is a song that speaks very much to my heart right now. I hope you enjoy it.

God Speaks My Love Language

2011-04-22T13:10:00.000-07:00

Yesterday, as I was driving to town for a midwife appt, I was listening to Dr. Gary Chapman on Chris Fabry Live. They began by talking about Dr. Chapman's new book, God Speaks Your Love Language. Dr. Chapman spoke more specifically about how God speaks to us in our love language when He brings us to salvation, but as I was driving, I was overwhelmed by God's love and care for me when Tucker died, almost 7 years ago.

My love language is quality time. And the morning that Tucker died, God showed up. Physically. He knew I needed Him desperately that morning, and He was here. Where we live is almost always windy, we almost never have fog because of the wind. The morning Tucker was born was a glorious, sun-shiney day at the end of July. That morning, as friends began arriving at our home, they noticed that the house (and only the house) was shrouded in a cloud. Clouds are mentioned just over a hundred times in Scripture and all but a small handful of those times the cloud represents the presence of God. I know that God showed up here to comfort and hold me as the realization that my son was dead hit me, as I sank into the deepest grief a Mama can. As my heart was shattered into a million pieces, God was here. My precious Father, who freely gave His son, so that I could spend eternity with Him, came and spoke my love language, came and held me as I grieved.

I don't have any idea how many times I have told people over the years that God's presence was so *tangible* to me during that time. I have always recognized God being here ~ especially in that initial, horrible time. I often call it the most horrible, precious time. Horrible because we were living such a nightmare, and yet precious because we were able to lift our eyes and praise our God in the midst of it ~ surrounded by those who loved us, and encouraged us in our faith. But, until yesterday, I had never made the connection that God was "speaking" to me. That He was showing me love in the way He created me to "see" love. I am undone. To think of the depth of His loving care, for a simple woman such as I...What words can I share to express the depth of realization that came to me? They all seem so inadequate.

The Big News Around Here...

2011-04-18T18:30:00.000-07:00

is that our little Jethro is going to be a big brother!

Along about the first part of October there will be a new little blessing in our house. God is truly good to us, and I am so thankful that He has chosen to bless us again!

I would appreciate prayers for a healthy, uneventful pregnancy, and a healthy baby.

Jethro's 1st Birthday!

2011-02-28T12:16:00.000-08:00

Wow, I have spent the last couple days in tears at various times. Tears of joy and thankfulness to my Father God for His wonderful faithfulness to us. I can't believe a year has gone by already.

We have a baby who is happy, adorable, content, adorable, engaging, adorable, playful, funny, and did I mention adorable? ;-) We have a beautiful house that is almost done, and we have been blessed with wonderful folks who were there when we needed them.

Yesterday, we had an open house to celebrate and at one point had over 80 people in our home! And, you could still move around. I think it's going to work well for family gatherings and hospitality. :-)

Here's a few pictures from the big day.

2d year MWSB students. They were here last year when Jethro was born. Although they didn't get to see him, they held a prayer vigil for him, and ministered to our family in a tremendous way. We were so thankful that they were able to celebrate this milestone with us.

The oldest and the youngest. A couple of handsome young men, I think. :-)

Just a little of the crowd of party goers.

Singing Happy Birthday. That would be a pepperochini in the baby's hand. He thought they were the bomb.

Me thinks the baby likes chocolate birthday cake! That would be a very Happy Birthday Boy!

Thank you, Lord for a wonderful year with this precious child! We give You praise for all that You have done!

Progress on the house

2011-02-25T11:57:00.000-08:00

I haven't posted any updates on the house here lately. I update Facebook pretty regularly, but it takes more time to do it here, so I just haven't.

We were hoping to move today ~ things aren't quite done, but I want to be at least mostly moved in for Jethro's birthday party which is Sunday. AAACCCKKK!!!!! Yesterday they were supposed to lay carpet. We didn't have everything we needed at the house (which they didn't tell us we needed), so the carpet layer threw a fit and left. :-P Can I just say I have been totally un-impressed by our carpet buying experience and would STRONGLY DISCOURAGE anyone from buying flooring from GREAT FLOORS. They sold us product they did not have, they piddled around for a week and a half before reluctantly telling us they could get ahold of the manufacturer to see if they could get more of it, they didn't make sure that we knew what all we needed to have done at the house so that the carpet could be laid. Yesterday, when I called and laid into the salesman about how this whole transaction has gone, I was basically told it was our fault it hadn't been laid yet ~ excuse me??? I am not the one who didn't tell me you could order more of my carpet! So, now we are about a month behind on getting the carpet laid. Not happy. And they wait until you are about ready to pay to tell you how much you are "saving" when they charge you more. :-P Anyway, unless you like it when you pay for product and then the store you are dealing with gives you nothing but a run-around, I suggest you stay away from Great Floors. It has been nothing but an exercise in frustration.

Today the carpet is finally getting laid, and I am hoping to at least get a start on moving furniture.

Here are some pictures of the progress we have made.

Kitchen, breakfast bar, and in the left background the school room lights.

Light in the living room.

Light in the master bedroom...bought for $20 on clearance!

West wall of the kitchen. Hickory cabinets, tile countertop, glass mosaic backsplash.

South end of the kitchen. The 'L' that the counters make is open to the rest of the house.

Chandelier in the greatroom. Cedar on the ceiling.

Laying the laminate. The girls were lots of help...at least *they* thought they were!

Will sweeping up after the laminate was laid. He claims he can out-sweep any woman. ;-)

Once we're down at the farm, we may be without internet for a few days. I forgot to call to let them know we would be moving. As soon as we have it back up and running, I will post pictures from Jethro's birthday bash!

Awareness day 16 ~ What can you do?

2011-02-17T00:13:00.000-08:00

When I was visiting off air with Mr. Fabry the other day, one of the things he wanted to talk about was 'What can the folks in the pew do?' God had other plans for the program though, and we never got that far.
It's something I had already been giving some thought to, so I thought that I would address it here as part of CHD Awareness month. It is difficult to know how to help someone when they are going through trauma. I know in the past, I have felt at a loss as to how to help. We have also told folks to give us a call if they needed anything ~ and we meant it. However, to expect someone who is dealing with traumatic issues to be the one to reach out...often we don't even *know* what we need. This post is written on the premise that you should not expect much of anything from the family in crisis. They are *in crisis*, so they just need to be ministered to.

So, here are some suggestions. These certainly apply to families dealing with heart defects, but would also apply to families dealing with cancer, death, downs syndrome, or any other defect or illness requiring hospital stays (or not, but I am including some hospital specific ideas).

Be there. Call, email, send a card, physically show up. Your presence means more than you can imagine. When Jethro was just days old, two of my friends showed up at the NICU with a basket full of china, tea and goodies. What a refreshing time that was. It meant a great deal. Days spent in the hospital get LOOOONNNGGG. You might want to call ahead, just to make sure they aren't taking a needed break from the hospital, or at least the room, but I was always so glad to see a visitor! I wish there would have been more. Even if you can only stay a few minutes, don't underestimate the value of your visit. This doesn't just apply to when someone is in the hospital. A chronic or catastrophic illness by nature creates a feeling of isolation. Your existence is travel, Dr. appts, and home. Maybe, if it's cancer, they can't have company, but you can still have contact and let them know that you are thinking of them. Don't assume they know. Don't expect someone who is dealing with hospitalizations, surgeries, learning new routines, dispensing meds, traveling back and forth to Dr. appts, on top of whatever they had going on before to make the call. They are likely thinking of you, they would probably have time to talk, but to expect them to initiate contact when their world has been upended....is a little impractical ~ they're just trying to make it through the day remembering everything they *have* to do.
On the day of a surgery, if you cannot physically be there; again, call, send an email, or if you're both on FaceBook, send a FB message letting them know that you're thinking of them and praying for them. If you have never turned your infant or child over to a surgeon for major surgery, I can't even explain to you what it's like. It's definitely an, "I HAVE to trust God" moment. With Open Heart Surgery, you know that they are going to be stopping your child's heart, putting them on bypass, etc. To have support on that day is invaluable. But don't expect them to ask you to be there. I know folks are busy, I know they have their own lives to live. I'm not going to impose on them by asking ~ I was sure thankful for my dear friend who came and sat with me the day of Jethro's Glenn. She asked me ahead of time if I would like her to be there, giving me the freedom to say "yes!", and know that it wasn't an imposition.
Provide meals. This may seem like a no brainer, however, they may be needed later than you would think. Jethro was in the hospital for 5 1/2 weeks. Our wonderful church family provided meals for my Mom (who had the rest of our children), so she didn't have to cook for so many extra mouths. They offered when we got home, but I had been away from my family for well over a month. I just wanted some semblance of normalcy...to cook and do laundry, etc. A couple weeks down the road, when I was overwhelmed with the new "routine", and multiple trips to town (an hour away) every week, meals would have been greatly welcomed! By that point, no one was offering, and I just didn't ask; we just struggled along. This is also VERY applicable when there is a death in the family ~ especially if that death is a child (no matter how old). Folks are great about providing meals right to start with and that is wonderful. But, if you have lost a child, you might really appreciate a meal months down the road when the rest of the world has continued moving forward, and you are still drowning in grief.
When someone is in the hospital, if you can afford to give them even a small monetary gift, it is so appreciated. Our hospital is great about providing meal tickets for parents of children in the NICU or PICU, however, not all families are provided those, and they do have a daily limit. And honestly, if you are spending an extended amount of time in the hospital, you are going to want to get food from somewhere else. :-P Hospital food gets old, FAST. Even if they can do the meals on meal tickets, the little extras, like vending machines or coffee add up quickly.
Along that line, taking them a fruit basket so that they have healthy munchies, or giving them a coffee card...so wonderful and appreciated. Our hospital has a local coffee company that has set up a couple or three different coffee bars within the hospital compound. I loved getting Thomas Hammer gift cards! If they are not in the hospital, but making a lot of trips to the Dr., you might give them a gift card for gas...I don't even want to think about how much we've spent on gas over the past year! Having someone in the family with an illness can add so many unexpected expenses, it's hard to even list them all.
If they have other children at home, then bringing the children up to the hospital is great. Don't spend a lot of time telling mom and dad how much the other kids need them. They know that. All you are doing is creating unnecessary guilt ~ adding to the guilt they are already feeling for not being at home. Even a sedated newborn NEEDS their Mama and Daddy there. They need someone to advocate for them, and to keep track of what is being done. As much as we don't like to think about it or consider it, mistakes happen...and often, it's Mom or Dad's sharp eye that catches it before it's too late. They need to be with their infant. If you have never had a child in the hospital, it's hard to understand. I knew my other children needed me, but I also knew that they were surrounded by family and friends that loved them and were caring well for them. Jethro needed me to be there watching over him. Giving support to the parents, and reinforcing to the kids that they are only away because they have to be, not because they want to be, that is a gift. We were overjoyed when someone would bring the other children up to visit, and wished it could have happened more often ~ but once again, not something I felt comfortable asking for because folks were already doing so much to help.
Not everyone has this ability, but some folks can just observe another's life and know what needs to be done. This can be a blessing for a family in crisis. As I mentioned earlier, it can be hard to know what is needed. But showing up unexpectedly with a meal, or offering to drive to a Dr appt., or a myriad of other things, without being asked. These are truly gifts to the family.

Families going through trauma need a lot of support. They may not be able to reciprocate much, if at all. Depending on what is going on, they may have all they can do just to stay afloat mentally, emotionally and even physically. That doesn't mean that down the road things aren't going to be more stable and the relationship will get back to 'normal'. Honestly, if folks didn't make the effort to at least stay in contact with me during the worst of our last year, by the time things settled down and I could catch my breath and think about something besides Jethro and the rest of the family's needs, I figured that they were gone. And I have so much on my plate, I am not pursuing relationships with people who aren't interested. It's fine. We move on. God is sovereign, He knows what is best and I trust that.

I know that I have asked you to step up and take the initiative. To be giving and self-sacrificing, but isn't that what God asks us to do? Aren't we to step in beside those who are hurting and do what we can to ease their burden? I know that I have failed to do that in the past ~ mostly because I just didn't know how to help. I just didn't understand. I am not fussing about how things were done for us ~ we were very blessed! God has provided us with an outstanding, loving church family and I am extremely thankful for them and all the support they have given us. They have truly been the hands and feet of Jesus to us this past year. I did want to share from a Mama's perspective, what is helpful...and a little of what is not. Ultimately, *ask*. But don't ask in a general, what do you need, sort of way. Ask specific questions. "Do you want the kids brought up?" "Do you need x, y, or z?" When your brain is overwhelmed with tons of information and emotions are running high, and you are exhausted, you can't necessarily answer a general question, but specifics can be easier.

May the Lord bless you as you seek to come alongside those in your life who are hurting and needy.

Disappearing Friends

2011-02-11T12:55:00.000-08:00

It's awareness day 11, and while this is not a CHD statistic, it is a CHD reality. This was one of the things I wish I had known going into this journey...although I'm not sure I would have believed it of any of our friends. Once you have a child with a catastrophic or chronic illness, you will have friends who just disappear from your life. It will likely be the ones you would have least suspected it of.

I share this because if you are dealing with this right now, I don't want you to think it's you. It's not. It's them. I have talked with folks dealing with CHDs, folks who have lost children, folks who are dealing with cancer or other big health issues and across the board, they tell me that people have just dropped out of their lives.

It can hurt, it can make you wonder if you did something, it can make you wonder at your discernment in choosing friends. But, as I have struggled through this, God has shown me that I need to recognize His sovereignty over my friendships, just as I do in the rest of my life. If the friendships would have been beneficial during this season, they would still be here, but they are not. I have to believe that God removed those relationships for our good. Because everything He does is for His glory and our good.

I have been very blessed in that God has provided me with a huge network of heart moms. Mostly online, but some I have had the joy of getting to know in real life. They know and understand the things I am going through, and that is invaluable. Some of the people in our lives that were more on the fringes, have become better friends through our struggle, and that has been a blessing as well.

If you are dealing with disappearing friends, I would encourage you to look to the Lord. He has a purpose in them leaving your life. Embrace those who would share your journey. And, whatever you might be dealing with, CHDs, cancer, downs syndrome, whatever, I would also encourage you to make connections online. If you are in an urban setting, likely there are some sort of support locally, but for those of us who live in rural areas, the internet can be a huge blessing when it comes to support and education in our journeys. It's difficult, it hurts...I am not denying that. But, grieve the loss and move forward. Do you want detrimental people in your life? I don't. I am thankful that I can trust God's sovereignty and wisdom in my relationships as well as every other area of my life.

CHD Awareness Day 10

2011-02-10T23:34:00.000-08:00

Jethro wants you to know...

Approximately every 10 minutes in the world there is a baby like me (With Congenital heart defects) born into the same hard fight as me. It begins with blood tests and sticky wires, being intubated & sometimes sedated from moving, talks of heart catheters & open or closed heart surgeries, IV lines, picc lines, central ...lines and many medicines & machines just to keep us alive. PLEASE PLEASE Raise Awareness!! ♥♥♥

Psalm 139: 13-16

2011-02-09T22:13:00.000-08:00

"For You formed my inward parts; you knitted me together in my mother's womb. I praise You, for I am fearfully and wonderfully made. Wonderful are Your works; my soul knows it very well. My frame was not hidden from You, when I was being made in secret, intricately woven in the depths of the earth. Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there were none of them." Psalm 139: 13-16

The question was asked today, "How do you reconcile that Scripture?" (In relation to CHDs) And here is my answer. :-)

Scripture is truth. It is God's word breathed out and written down for us. So, the reality of Jethro's heart does not change the truth of this Scripture. In fact, I believe that it magnifies the truth of this Scripture. God knit together Jethro's heart just as carefully as yours or mine. In that sense, while Jethro's heart has a defect, it is *not* defective, it is knit together just as God intended it to be. God has a plan and a purpose for Jethro and his heart, and that purpose could not be realized had his heart been healthy.

I stand more in awe of the wonderful creation of the human body now, after living with Jethro than I ever did before. What an amazing, breath-taking thing the human body is. What a beautiful balance of everything. So fragile and yet so resilient at the same time. Jethro's lungs were severely undeveloped because of the enlargement of his heart. But, once the size of his heart was reduced, his lungs grew! How amazing is that?

I see Jethro's heart as a physical picture of our spiritual hearts. Broken, incompatible with life, he was headed for death, until the Drs and surgeons stepped in and intervened. They "fixed" his heart so that it could be life-sustaining. We are born with spiritual hearts that are broken and incompatible with life ~ headed for eternal death. Until the Great Physician steps in and touches our heart and makes it life-giving ~ for eternity.

The journey of a CHD family is not easy. There are many hard moments, uncertainties, things that are just flat out unfair. Sometimes there is death. But I thank God for Jethro and his heart. I wouldn't have missed this for the world.

An Opportunity to Share Jethro's Story

2011-02-08T16:13:00.000-08:00

Wow. Last month I had emailed some different radio programs to ask them to consider doing a program on CHD awareness this week. But, I never heard anything back from any of them. Well, this morning, I had an email from the producer of Chris Fabry Live on Moody Radio.

Tomorrow, God is giving me the opportunity to share Jethro's story and to help raise CHD awareness on national radio. I can't hardly believe it.

I would surely appreciate prayer for tomorrow! I want to be able to clearly share Jethro's story and how greatly God has blessed us through this journey.

Here is a link to Chris Fabry Live I hope that works tomorrow! :-O I believe you can listen live online or later as a podcast, if you are interested.

Awareness Day 8

2011-02-08T09:50:00.001-08:00

As a follow up to yesterday's post, here is an article with some important questions to ask at your 20 week ultrasound. Please, print it out and take it along with you ~ it could save your baby's life.

http://www.examiner.com/pregnancy-health-in-national/the-top-five-questions-to-ask-during-your-20-week-ultrasound-to-detect-congenital-heart-defects

CHD Awareness Week Begins

2011-02-07T12:08:00.000-08:00

Today through the 14th is CHD Awareness week. If you are pregnant, I would suggest a couple of things. Sometime around 20 weeks or after, get a good, diagnostic ultrasound done. Ask specific questions about the heart. Don't just settle for knowing if you're having a boy or girl. Many CHDs can be caught at this point. Be aware that the perinatalogist will probably suggest further testing to see if you want to murder your baby. Whether or not you go for more testing, please let me encourage you to give your baby the gift of life. No matter how bleak things look. They held out almost no hope for Jethro ~ and we are about to celebrate his first birthday. But life, no matter how long it is has value. Yes, a CHD or something else may take your child's life. Just don't let it be at your hands. Enjoy that baby, no matter how long you are blessed with them.

The other thing I strongly encourage you to do is make sure that a pulse oximeter test is done on your newborn. This is a very simple, non-invasive test that measures your baby's oxygen levels. They should get a reading from the hand and foot. This alone will catch many undetected CHDs. Still, not all hospitals are doing them routinely ~ make sure your hospital/midwife does a pulse ox on your newborn! You are your baby's advocate, so advocate. :-)

Today's CHD fact:
Congenital Heart Defects DO NOT have a cure. Children born with a CHD undergo OPEN HEART surgery, usually multiple surgeries to "mend" the problem. But this is only pallative, never "fixed" CHD'ers have a lifetime full of medications, heart catheterizations, and numerous procedures. 1 in 100 births! Donate to CHD research and help us get one step closer to a CURE.

Picture by Jessica Goffard ~ thanks, Jess!

Did you know???

2011-02-05T11:01:00.000-08:00

Every 15 minutes a child is born with a CHD. That means every 15 minutes a child must begin to fight to survive. That means every 15 minutes a new family must begin to rely on doctors, nurses and modern medicine to keep their child alive. That means every 15 minutes people’s lives are changed forever. February is Congenital Heart Defect Awareness Month. Help spread awareness for all the CHD warriors and angels. ♥

CHD AWARENESS

2011-02-01T08:39:00.000-08:00

Banner designed by Becki Mobley

February has long been associated with hearts. Valentines Day, sweethearts, romance. For our family, now it is associated with broken hearts. Our sweet Jethro is a February baby, so we are going to have the joy of celebrating his first birthday this month, but it is also CHD awareness month. With the week of the 7-14 officially CHD awareness week. I am going to try to stay top of things this month and post facts about CHDs throughout.

Congenital heart defects are among the most common birth defects, affecting nearly 1 out of 100 babies in the United States. Some heart defects are mild, while others can be life-threatening. Other common birth defects include cleft lip/palate, Down syndrome and spina bifida (open spine), affecting about 1 in 700, 1 in 800 and 1 in 2,500 babies respectively.

I encourage you to stop and read the previous paragraph once again. There is a difference of 600 babies between CHDs and the next most common birth defect. Yet how many of us have heard, or are familiar with Down syndrome, or cleft lip/palate or even spina bifida. How many of us are ignorant of CHDs? And yet, the possibility of knowing or having a child with CHD is much more likely.

More to deal with

2011-01-16T15:26:00.000-08:00

I have noticed for a while that Jethro had a curve in his lower spine. When I first noticed it, I thought it was odd, but we were dealing with so many other issues at that point that I didn't even mention it to anyone. As teh months have gone on, and I continue to notice it, I have become more concerned. His therapist had said that his lower back muscles were very weak (one of the reasons that he couldn't sit by himself), and so I was hopeful that the curve was just caused by weak back muscles and that as he got stronger, it would straighten out.

Last month I mentioned to Mike that I wanted to get Jethro into our chiropractor to see if she could help his spine. I knew that if it was something that couldn't be fixed with manipulation, she would be very upfront about it. And, if it was something more, I wanted to get on it so that it could hopefully be taken care of without any or very little invasive 'intervention'.

Thursday, Jethro had an appt with the chiropractor. I told her my concerns and she examined him. He has scoliosis. He does have an S shaped curved to his spine ~ I had missed the upper curve. So, she is referring us to the local Shriner's hospital. She had never seen scoliosis in a baby...not even in school. (This is Jethro we are dealing with!) She didn't even want to adjust him until a spinal specialist has looked at him.

I was disappointed that Jethro has one more thing to deal with, but I was encouraged that we left her office with a plan in place. Once we got home, I looked up infantile scoliosis. Only 1% of children under the age of 3 have scoliosis...Yep, that's my Jethro. :-) At least he's holding true to form...I'm wondering if I should have him play the Lotto.

I am now getting everything together to send to Dr. W, so that she can make a referral to Shriners. She said that it could take a month or more to hear from them, so we would appreciate prayers that everything goes through smoothly.

Jethro is doing well. He is now sitting by himself for long periods of time, happily playing with his toys or observing his brothers and sisters. He has 5 teeth in now, and judging by his crankiness, I think maybe 20 or more coming in. :-/ That's not totally fair. He is still very happy and content, but boy, when he decides that he is unhappy ~ look out! Bed time seems to be mostly when he decides that he doesn't feel too chipper. I'm getting in lots of singing. :-)

Happy boy!

Hallelujahs

2011-01-12T17:23:00.000-08:00

I haven't had a lot of time to think or share lately, but yesterday I took time to post some thoughts on a song I am preparing for church. So, I thought I would send you over to my other blog. :-)

Better than a Hallelujah

Please click on over.

Happy New Year!

2011-01-01T09:31:00.000-08:00

Wow. A new year is upon us...where did the last one go?

2010 was a year full of trials for us, but as I look back on it and think of God's faithfulness through it all, I can honestly say that through the greatest trials come the greatest blessings.

It is in those great trials that we see the hand of God at work.

It is in those great trials that we turn to Him and draw closer to Him.

Even in our darkest moments from this past year, there was something to be thankful for.

SomeOne to be thankful for. God never left us, He was always there, leading us every step of the way.

I am so thankful to have walked through the past year with my Lord and Savior, Jesus Christ.

Although it is gone, I'm not going to say "Good riddance" or "Boy am I glad that year is over!"

:-)

We received the blessing of Jethro in 2010, we saw God work miracles in his life.

God stretched me in so many areas this past year, and I have done many things I wasn't sure I was capable of doing.

I am thankful for 2010 and the lessons learned, the gifts of new friendships, the blessing of

the best medical folk around.

I am thankful for the perspective 2010 has given me.

I am looking forward to the promise and potential held in 2011.

May you see blessings in everything God brings your way this coming year.

May you have the ultimate blessing of knowing Jesus as your Lord and Savior.

Happy New Year!

HOPE

2010-12-26T20:46:00.000-08:00

"For I know the plans I have for you, declares the Lord, plans for wholeness and not for evil, to give you a future and a hope."
Jeremiah 29:11

"More than that, we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God's love has been poured into our hearts through the Holy Spirit who has been given us." Romans 5:3-5

"Rejoice in hope, be patient in tribulation, be constant in prayer." Romans 12:12

Hope has been my word for the year...and a half. :-) Late last fall when we found out about Jethro's heart, it was devastating. The prognosis was very grim; they didn't really expect him to make it to birth, and if he did make it that far, they said it was very likely that he would die within the first week or so. I can't even tell you how suffocating that appointment was. I was deeply panicked and grieved at the same time and I was quite honestly terrified of walking through the grief of losing another child. I knew that God is faithful, and I knew that He would carry me through whatever He had for us, but I just didn't want to go there again.

As I regained my bearings a bit and began to pray, I felt God impress me with the knowledge that He would not miraculously heal Jethro's heart. I prayed for it, but as I prayed, I just knew that this was a journey we were going to have to take. However, as I prayed, God also gave me a very sure feeling that everything was going to be okay. Now, I will admit to you, I didn't know what "okay" meant. I knew it could mean that Jethro would die, and we would once again find God faithful within that grief. I also knew it could mean that Jethro would live and we would find God faithful within that path. One thing I have learned over the last several years is that God's definitions and my definitions don't often mesh up, but God's are always right. So, although I didn't really know what okay meant, it did give me a great sense of peace because I knew that whatever God had in store for us He would be there to strenthen us and hold us steady.

Jethro was born dead, and after extensive efforts on the Drs part, God allowed him to be resuscitated. By the time I woke up from surgery, my little boy was safely ensconced in the NICU, sedated, intubated, and hooked up to many monitors. That was a Friday. Over the weekend, he held his own, and talking with the various Drs, I got the impression that although they were cautious, they felt he was doing okay. Monday arrived, and so did Dr. Jensen. We had seen him during my pregnancy, and I was anxious to get his opinion on how Jethro was doing. He sat us down and talked to us about how serious a condition Jethro was in. When I asked him if he was at all hopeful over how well Jethro had done over the weekend his answer was a simple, "No". He explained 4 different surgery options and why each one was not an ideal plan ~ also explaining that the surgeon's might refuse to do surgery because of the condition of his heart...and then he suggested that we might want to consider 'comfort care'. Which is basically making baby comfortable while they die. I was hysterical ~ not in a loud, frantic way, but I began to cry, and I could not stop. I felt like I had lost my baby. I finally had to get up and leave. Poor Dr. Jensen. He was in a lose-lose situation, not only having to deliver hard news to a Mama and Daddy, but having to deliver that news to a post-partum, post-surgery hormonal Mama.

I had lost my bearings. I felt like I had either mis-understood God, or that I was having an epic fail of faith. I called my mom, and I called a friend who had had an Ebstein's baby the year we lost Tucker. I knew she had to have had the same conversation with their cardiologists. Mike finally came to my room and we talked about 'the options'. I also got in touch with a local heart mom, and bless her, she came right down to the hospital and talked with me for hours. I asked her about how they came to the decision to go the surgery route, and many, many other things. By that evening, I had calmed down much, and Mike and I had determined what has led us through all this time ~ if there is life, there is hope. We would fight tooth and nail if need be to get Jethro the care he needed to live.

Within the next day or two we talked with the surgeon, who came to us with a surgical plan (thank you, Lord!), and the die was cast. Jethro had the first of his surgeries at 10 days.

This has been a long, hard year. We've been through so much, and yet, we can honestly say that God has been more than faithful, and we are tremendously blessed. I wanted to share this because I think sometimes we really get down on ourselves when we lose sight of God's promises. But, I believe that's just a part of the human condition. It's how we react when we are in that spot. Am I going to turn my back on God because I think that suddenly He's not faithful, or I feel like He's turned His back? Or, am I going to stay the course, trust His word, even when it doesn't 'feel' true, and believe? If I falter, am I going to continue the fall, or am I going to catch myself and lift my heart heavenward once again?

If Jethro had died, would I be able to say these things? Yes. Yes, I would. And, six years after Tucker died, I can say that I am so thankful for that experience. Please don't misunderstand, I would *love* to be raising my sweet boy ~ there is a definite hole in our home where an active little 6 year old boy should be ~ but I am thankful to have had and lost Tucker, because I believe that part of God's purpose for Tucker was to prepare me to parent Jethro. To be able to walk through all this uncertainty and upheaval in trust and faith ~ and that is a true gift from God.

So, what does hope look like at our house right now? Let me share some pictures with you from Jethro's first Christmas...a Christmas we weren't sure we would have.

Opening his first present

Who took my picture!?!? ( I got this look *every* time I snapped a shot!)

This makes me laugh every time. Christmas is apparently a very surprising holiday.

Opening (or eating) presents at Pak and Grammie's house.

I am so very thankful that I serve a sovereign, faithful God. A God of hope.

Our Christmas/New Year's Letter

2010-12-02T09:24:00.000-08:00

Ezra, Laura, Josiah, Mama, Kathleen and Logan (front)
Levi, Will, Garth, Daddy and Jethro (back)

Warm Winter Greetings Beloved!

It’s been a long 2 (3?) years since we’ve sent out a letter, but you were all in our thoughts last couple of years. We have had a couple of years full of trials and blessings, and we stand before the end of another year with thankful hearts, knowing that God has truly blessed us.

We are thankful for a son born dead, yet who lives. Jethro Storms Dole was born February 26, 2010 at 3pm by emergency c-section. He weighed 9lb 1oz and was 22 inches long. He required extensive efforts to be resuscitated, but by God’s grace, he was. Jethro was born with a very severe and rare (1 in 210,000) heart defect known as Ebstein‘s Anomaly. His heart condition was incompatible with life, and he really was not expected to make it very long.

We are thankful for outstanding cardiologists and pediatric thoracic surgeon’s who were willing to operate on Jethro’s heart so that it could function and support life. Jethro underwent his first open heart surgery at 10 days.

We were so very thankful to finally hold our newest son when he was 2 ½ weeks old. You never realize how much you take for granted all those snuggles and time spent rocking, until you are not able to do it.

We are thankful for the timing of our house burning. March 17, I was in Jethro’s PICU room and received a phone call that our house was on fire ~ not the call you want to get at your critically ill child’s bedside. However, we didn’t have to worry about anyone being in danger because the rest of the family was at my Mom and Dad’s house, and, because we were dealing with life and death issues with Jethro, losing the house was not as traumatic as it might have been otherwise. Extremely difficult, yes, but because of the circumstances we were in, we were able to look on that loss with a better perspective than if it had been the only traumatic thing happening to us.

We are thankful to be part of a rural community. In times of need and trauma, you can really appreciate small communities. Folks came around us and supported us and prayed for us and did what they could to help. We were overwhelmed by the love and generosity shown to our family.

We are thankful for a new house going up where the old one stood. We were able to use our existing basement, and I have a dear friend who is very talented when it comes to drawing up floor plans. The Lord has truly blessed us with good builders, great deals…and although it’s not going up in my timing, I know that it is being built in God’s time. I am *very much* looking forward to moving back into my own home. We are also thankful that our little farm is now paid off, and the new house going up is debt free ~ what a tremendous blessing that is!…AND Will isn’t 42! :-)

We are thankful for health for the rest of our family. We are thankful that we have grown closer over the last year, and that everyone is doing well. The little boys have adjusted to a new baby well, and love their little brother very much. The girls are more and more help all the time, and decided that they enjoy cooking (although they still need to figure out cleaning up after themselves!). Logan and Garth both played football this fall and had good seasons. Middle school went undefeated, and the high school team only lost 3 games this year. Levi and Will have rented an apartment in Plummer and are busy with work. They have both been such a blessing over the last year, helping out with the younger children and just being good, steady young men. Levi is working at the hardware in town, and was recently promoted to Assistant Manager of the hardware. Will is still working part-time for the post office, and is now on staff part time with South Lake Youth Ministries. It is so exciting to see what God is doing in their lives and see them blossoming as adults.

There has been much to the last couple of years, and I would love to be able to share all of it, but that would be a novella at least. :-)
This past year has been full of hospitalizations, therapies, and doctor appointments, as well as our usual busy-ness. But through it all we have seen God’s hand and known Him to be faithful. I can’t even imagine how we would have survived this past year without the firm foundation of our faith in Jesus Christ. He has been my source of peace and calm in the stormiest of waters.

May you find yourself blessed as well as you look back over this past year, and forward to the new.

All our love,

The Dole clan, Mike, Tracy, Will, Levi, Garth, Logan, Kathleen, Laura, Josiah, Ezra, and Jethro

November 29 ~ BT Shunt makes history

2010-11-29T11:13:00.000-08:00

Today I am wearing blue and red. For CHD awareness. Today is the anniversary of the first BT operation. This is why CHD parents are so passionate about awareness and research. Before this operation was performed some 70 years ago, cyanotic CHDers died, most before their first birthday, and those that survived that first year were very sickly. This operation was a huge leap forward in treating these precious children.

The BT Shunt was part of the first OHS that Jethro had at 10 days.

As traumatic as it is to see your baby like this, imagine if it wasn't possible. That your only option was to watch your blue baby slowly ~ or not so slowly ~ die. This operation was our first step toward this:

9 months now!

Here is a web page that talks a bit about the Blalock-Taussig shunt operation.

Happy Thanksgiving

2010-11-25T01:17:00.000-08:00

So it's Thanksgiving.

This has been a year of many things to be thankful for. Our son, who was born dead, is alive and thriving. Our house burned, yet God's timing is perfect and we were able to keep it in perspective. Our family has drawn closer together, and we have seen God provide over and over.

I am thankful.

Yesterday, Jethro had a cardiologist appt. We were able to take him off one more med. His heart looked great on the echo, and he doesn't have to go back to the cardiologist until March ~ he said if the roads were good and we wanted, we could come back in February. :-)

I have said it before, but I want to repeat it. I am so very thankful for the Drs. God has provided for Jethro. Dr. Rick, who is never afraid to give us worse case scenario, but is also willing to spend the time answering my many, many questions. Who had the unenviable task of talking with us just after Jethro's birth and laying out our options, but was compassionate and understanding.Who made sure that we knew that Jethro's Dr.s were among those praying for him ~ what a comfort and encouragement that was!

Dr. Burg aka Sunshine, who gave us the news of Jethro's diagnosis, but always held out hope. She's been the cardiologist in both surgery's and is always on top of things immediately following surgery.

Dr. Carl, who is also very good about answering my questions, erring on the side of caution, and providing memorable quotes.

Dr. Anderson, who specializes in rhythm issues. I have been so thankful for his expertise and care when Jethro has had severe arrythmia issues.

Dr. Hrar aka Hurricane Hrar. :-) He always brings a tremendous amount of energy into a hospital room, and though we haven't seen him as much, the wisdom and experience he brings are invaluable.

Dr. Worrall, the surgeon who's skilled hands God used to repair Jethro's little heart so that it could sustain life.

I am thankful for the entire staff at NWCCHD. From the sweet gals at the front desk to the surgery scheduler, to the nurses and records transcriptionist. Everyone has been so supportive and such an encouragement, and gone above and beyond in gettin' it done ~ no matter what the "it" is.

We are so thankful for the nurses who lovingly care for Jethro when he is in the hospital. What an outstanding group of (mostly) ladies. There are a few guys in there! They give their all, they recognize us whether they see us at the hospital or not, and it's obvious they genuinely care about the little folks entrusted to them. I have often said, I would much rather be home, but if I can't be home, there's no place I'd rather be than Sacred Heart. And I can't forget the Palliative Care staff, especially Caroline, Beth, and the social workers, All have eased the way while Jethro was in the hospital.

The therapists that have worked with Jethro. Karen, Natasha, Jessica, and Lynn. We are extremely thankful for their expertise and care. They have gotten us through feeding issues, reflux, and physical limitations...and they are sooo excited when he makes strides forward!

I am thankful for the adult CHDers, and heart parents that God has brought into my life since Jethro was born, what wonderful, precious friends they are, and I feel so blessed to have them in my life.

I am thankful that we are here, 9 months later with a mostly healthy baby, who is happy and content. Who loves his brothers and sisters, and is doing really well. :-) I am thankful for Will, Levi, Garth, Logan, Kathleen, Laura, Josiah and Ezra too. Each one is such a blessing and adds so much joy to our family. Each one is so unique and special, and I feel so privileged to be their Mama. I am thankful for my precious husband and our 21 years of marriage.

I have also found myself more and more thankful for Tucker, our son who died 6 years ago. Now, walking this journey with Jethro, I really believe part of Tucker's purpose was to prepare me to parent Jethro. I am thankful that God walked us through that deep, dark valley. I am thankful that He is faithful and true. I am thankful that He never lets go. I am thankful for all I learned of Him during that time, because it has enabled me to walk this valley in faith, hope and trust.

I am thankful that God pulled me from the mire and cleansed me. That He continues to work on me, molding me further and further into the image of His precious Son and my Savior, Jesus. I am thankful I live in a country where I can freely share that.

So, with a heart full of praise and thanksgiving, may I wish you all a very Happy Thanksgiving from our home to yours.

22 Things...

2010-11-22T10:48:00.000-08:00

I'm not very good at keeping up with this, am I? I must admit, I consider myself a pretty thankful person, but I am finding this a bit of a challenge as well! However, I do believe it is an excellent excercise ~ and definitely should be a daily habit in our lives. That makes it sound more "chore-ish" but that is not how I mean it. It should be a joy to us to look around and see how God is blessing our lives, but it is a "sacrifice" of praise, which tells me that it isn't always easy.

That being said, here is my list of things to be thankful for today:

A young friend with cancer was able to come home over the weekend!
I had a quiet day at home yesterday (Sunday's are usually busy, busy!).
Snow is falling.
My house is closed in! So thankful we don't have open walls or windows to let the snow in while folks are working.
Plentiful magazines for inspiration as we decide on interior details for our home.
That we live where there is plentiful natural materials to incorporate into our home.
Snow days! Even homeschoolers get those. ;-)
A fussy baby...okay, I'm not thankful he's fussy, but I am thankful that he's here to fuss!
Older children that are helpful.
The love the older children have for Jethro.
The computer. Our phone has been out all weekend, and so my "connection" to the outside world has been my computer. It's also been a God-send in helping me to price out values on our belongings.
Tea! I know I have given thanks for tea already, but honestly, everyday I am thankful for tea. There is something soothing, romantic, and nurturing about a good cup of tea.
Medicines. I am pretty anti-med. However, I am extremely thankful for the medicines that have helped Jethro's heart to function in a way that keeps him going. Some of them have been extremely potent, scary side-effect kinds of meds, but his Dr.s have been very consciencious in how they are used with him. I am thankful that we live in a time and country where these things are available when needed.
Dr. Burg. She is the first cardiologist we met on this journey. She is also the one that insisted that Jethro be monitored by the neonatalagist, when the OB and the Neo decided he didn't need to be. She saved his life by insisting on it.
Karen ~ the wonderful US tech that did the majority of our biophysical profiles. Her alert eye and concern, probably saved Jethro's life as well.
Dr. Worrall. This is the skilled surgeon that has been used of God to save Jethro's life as well.
The gathering of the saints. I am so very thankful for the fellowship of folks who love the Lord with all their heart and encourage me in my walk.
My children who are so loving and forgiving. I can be so cranky sometimes, and they will turn around and love me and tell me I'm the best mom ever. May God forgive me my many, many shortcomings as a Mama and make me the Mama they need and deserve.
Flannel nightgowns ~ is there anything better to settle into a long winter's sleep in?
My king-size bed. I've been wanting one for years, but we couldn't fit it into our bedroom. Now I finally have one, and there is room for Mike and I and at least 2 children! I love it!
Jethro has outgrown the need for his sleeping wedge!
Joy in every circumstance.

Quote for the Day

2010-11-21T18:01:00.000-08:00

"Pride slays thanksgiving, but an humble mind is the soil out of which thanks naturally grow. A proud man is seldom a grateful man, for he never thinks he gets as much as he deserves."

Henry Ward Beecher

Some pictures of the house

2010-11-20T10:04:00.000-08:00

The front of the house with windows and a front door! Eventually, there will be a porch.

The stairs leading up from the basement. That's Garth's room in the corner with the window.

This is the master bath. The vanity/sink will go where you can see the black pipes on the right of the picture. Our lovely claw foot tub, and there will be a double headed shower on the left in the foreground.

This is the northeast corner of the house. This will be the "formal" living room. To the right of the tall narrow window will be a gas fireplace.

This is the "great room". It is the southern end of the house and has a vaulted ceiling. The partial wall in the foreground is the south end of my kitchen. The sink will be on this wall and there will be a breakfast bar. I'll have a lovely view looking out those windows while doing dishes!

Thankful for 19...

2010-11-19T22:20:00.000-08:00

Today I am thankful for:

Army guys all over my floor, for that means there are little boys in my home.
Baby snuggles.
Meat in the freezer.
Stairs in my house.
The furnace guy is done.
Insulation is going in.
That God has blessed me with 9 amazing children.
He (God) never gives up on me.
My brother, Clint. Thinking of him tonight and praying for his safety.
That Bob loves to mess around in the kitchen ~ mess being the key word. :-)
Jethro's home medical co. What a blessing to have needed supplies delivered to our doorstep.
Jethro's nutritionist. She is another one of his peeps that is always so encouraging, and open to natural health things. I love being able to bounce ideas off of her. She is a true blessing to us.
Possibilities
Hope
No colds so far!
The Christmas contata our church is performing. It's more of a community event, with folks from various churches coming together to sing of the miracle of the incarnation. It's always a wonderful time of fellowship.
Warm slippers.
God's provision of snow clothes for the children.
A son willing to drive to Spokane to rescue his Mama. :-)

18 Things

2010-11-18T14:33:00.000-08:00

Wow, it's the 18th already! Today I am thankful for:

Numbered bullet lists, so I don't have to keep track. :-)
eBay. Often when I can't find or afford what I'm looking for in town, I can get on eBay and there it is for a price I am willing to pay.
Instant messaging. What a great way to keep in touch with friends.
That we live within a few miles of my parents. I am so thankful that my children are able to spend time with their grandparents and really get to know them. What a blessing.
The ability to sew.
Snow. It's here. I wasn't quite ready for it, but one of the things I love about North Idaho is we have real seasons, and I do love snow.
Grocery stores and the abundance of food within them.
Jethro's heart. I see Jethro's heart as a physical picture of our spiritual heart. Broken and incompatible with life ~ until the Great Physician heals it.
The look in Jethro's eyes when he spots me. :-)
Cell phones.
That Garth didn't do more damage when he slammed his finger in the door this morning.
For each breath I take.
Ezra and how much he loves his baby brother.
My Grandma and the godly influence she was in my life.
The smell of pipe tobacco. It always brings to mind my dear, wonderful Grandpa.
Clear roads on a snowy day.
Christmas movies.
A baby without oral aversions!

A true Dole...double fisting it!

17 Things to Be Thankful For

2010-11-17T15:16:00.000-08:00

Well, I've missed the last few days! I guess I'll be thankful that I've been busy. :-)

Today I am thankful for:

Lynn, Jethro's physical therapist. She is always encouraging, has ideas for how I can help him in his development, and is positive and upbeat.
God appointed 'touch points'. When we lost Tucker 6 years ago, the SHMC helicopter and crew came to our house. This last winter when Jethro was born, one of our charge nurses in the PICU was one of the crew members from that flight. I don't know why God weaves lives together in this way, but I know He has a purpose in it, and I am thankful.
The precious babe my dear friend is getting close to delivering.
French doors put in at my house!
A lovely vanity with matching mirror for our master bath and 3 stained glass lights.
My mom. She has always been an excellent example to me, and a wonderful prayer warrior.
A hard working husband.
Grown and almost grown boys who are upstanding young men, that I really enjoy spending time with.
That God has blessed me with a sense of modesty ~ if you've been shopping lately, I'm sure you can relate!
Chubby armed hugs and sticky kisses.
Getting to live in a house I've wanted to live in since I was a little girl.
Wildlife ~ how wonderful of our Heavenly Father to bless us with beautiful critters that are good to eat!
Music.
Changing seasons.
Kittens.
My girls, who are learning to be more and more helpful.
Electricity.

12 Things

2010-11-12T21:25:00.000-08:00

Today I am thankful for:
1. Baby giggles.
2. A good visit with friends.
3. The front door to the house hung!
4. Will and the things God is doing in his life.
5. Levi. He's such a nice young man, and he's going to be such a good daddy someday!
6. Garth's buck ~ meat in the freezer.
7. Logan and the way God is working in his life this year.
8. Tea ~ Where there is tea, there is hope.
9. Candles on a cold evening.
10. Mr. King's doughnuts. Yummy!
11. Rigs that run.
12. Sweaters.

Have you come up with a thankful list?

11 Things to be Thankful For

2010-11-11T12:34:00.000-08:00

Today my thankfulness list includes ~

I was able to switch out Jethro's G-tube button with no problems.
A great staff at NWCCHD. :-)
Will and his willingness to help us get the house built.
Andie and the blessing she has been to our family.
My step-grandpa, who would have been 104 today. He was such a ray of sunshine. Very fun to be around and one of those people who always saw the positive in any situation.
The extended family God has blessed me with.
Friends who make contact often. Having a critically ill child is lonely, and I appreciate those who take time out of their day to see how we're doing.
The Food Network. We love the inspiration it provides for our kitchen!
My brother, Clint. Currently serving his country, away from his wife and children, ready to deploy.
Our vetrans. They sacrifice much, sometimes all, and I deeply appreciate it.
My fellow moderator's. What a wonderful group of women!

Thankfulness

2010-11-10T10:04:00.000-08:00

Someone asked the other day how, in the midst of everything that's going on, can I be thankful without feeling saccharine sweet? :-) Let me assure you, I am not saccharine sweet!

So, here is my answer. God is always worthy of our praise and thanksgiving, no matter what is going on in our lives. It's hard to remember in the society we live in, but really, it *not* all about me. It is about God and Him glorified.

I never ignore or deny what we are going through. It's hard. To have a baby born with an incompatible with life diagnosis, to have gone through 3 surgeries and multiple hospitalizations, to have your house burn down in the midst of it, to have struggles with some of the healthy children...none of it is easy ~ most of it makes you want to hole up somewhere until a better day comes! Some of it, I have a harder time with. Why for example, does a baby, who has to have multiple IV lines, blood draws, etc., have veins that are almost impossible to get with a needle? When they do get an access line, it often blows quickly. Guess what? THAT'S NOT FAIR!!! To have to hold your screaming baby so that a nurse or doctor can do a painful procedure ~ TOTALLY goes against every mothering instinct you have, but to not be the one to hold and comfort just isn't an option either! So, I acknowledge these things. That doesn't mean that there isn't plenty to be thankful for in the midst of the trial. And sometimes I don't feel very thankful, but I look for things to be thankful for anyway.

I learned a long time ago, that being thankful helps me to keep from depression. It's not that I have never been depressed ~ I have buried a son and suffered a devastating miscarriage while in the worst of the grieving process. I do know depression. I remember telling someone that I couldn't even say I was in the valley of the shadow of death because there would be some hint of light in the shadow, I felt like I was in the abyss, totally surrounded by darkness. I couldn't see God's hand, I couldn't feel His presence. I couldn't help myself other than to lay at the feet of Father God and plead for His help. I would pray and acknowledge what I was feeling, if I was starting to believe my feelings, I would acknowledge that as sin, and then I would pray what I knew to be truth. That God will never leave me nor forsake me, that He never changes, He comforts the broken hearted, etc. It took a while, but God slowly brought me out of my depression. But involved in that process was thankfulness. I still tried to make the effort to be thankful.

Hebrews 13:15 says, "Through Him then let us continually offer up a sacrifice of praise to God, that is, the fruit of lips that acknowledge His name." (emphasis mine) Praise, thanksgiving is a sacrifice. That means that it's not always easy, but it is always necessary. Thanksgiving isn't denying the trials and tribulations, pretending that they don't exist. Thanksgiving is a heart attitude that looks above the trials in the eyes of Father God and recognizes that He is in the midst of them along with you. It is recognizing that He is worthy no matter what.

Today is the 10th, so here is my list of 10 things to be thankful for.

That I live on the 3d rock from the sun. What a gorgeous place created specifically by God for His children. He created everything 'just so', so that it's perfect for life.
The strengthening bonds between my children because of Jethro and his heart.
A thankful heart.
A beautiful new front door for our home.
2 'new to us' beautiful dresses for the girls.
A godly mom.
A dad who is knowledgeable in so many areas and his willingness to take his grandsons alongside and teach them.
A crisp clear fall day.
A job for my Beloved that allows him plenty of time for building our house.
A washing machine ~ I am soooo thankful that I don't have to do laundry by hand! :-)

I hope that you will take time today to think about what you are thankful for.

9 Things...

2010-11-09T07:57:00.000-08:00

Today I am thankful for:

*The nursing skills I have developed

*The ability to care for Jethro

*The upbringing I have had (you just do what ya gotta do)

*Jethro's cardiologists

*Jethro's thoracic surgeon

*The SHMC nursing staff

*Other heart families

*Adult CHDers

*A sweet, chubby cheeked little man named, Jethro :-)

8 Things...

2010-11-08T09:06:00.000-08:00

I missed yesterday here on the blog, but I did have 7 things I was thankful for! How about you? How are you doing with this 'thankful challenge'?

Today I am thankful for:

*My kitchen starting to take shape. Mike has my pantry and the wall next to it framed in.

*Stairs! We have 4 flights of stairs in the house, and 3 are built.

*A Pastor that knows how to build stairs and is willing to come to our house and do that.

*Windows going in today.

*Waking up next to little boys who have 'snuck' into my bed during the night.

*The internet. So much potential for bad, but also for good! We have gotten several things for our home via the internet, and for a much better price than locally.

*The wonderful community I have found online. During a time I desperately need support and understanding, 'virtual' friends have really filled a void in my life.

*My Beloved.

So what are you thankful for today?

6 Things I am Thankful for

2010-11-06T16:46:00.000-07:00

Today is the 6th, so that means sharing 6 things I am thankful for today.

*Blue skies in November

*Weather warm enough for the children to play outside

*Quiet

*Dirty dishes ~ cause it means there is food to eat and loved ones to eat it!

*A beautiful, new-to-me sweater for fall/winter

*The opportunity to give an answer for the hope found within me. :-)

So, what are you thankful for today?

5 Things to Be Thankful For

2010-11-05T22:06:00.000-07:00

Today I am thankful for:

*Outstanding Dr.s and nurses who have cared for Jethro over the last 8 months.

*A home that is being built through God's provision

*A safe football season

*Perspective

*Meat in the freezer

What are you thankful for today?

Being Thankful in November

2010-11-04T10:29:00.000-07:00

I am thankful everyday. :-) God is so very gracious to me and my precious family, I can't help but be thankful. However, there is a challenge going around on Facebook to be thankful for something everyday in November. Well, I'm here to up the anti! I challenge you to find the same number of things to be thankful for as it is the day. So, today is the 4th, find 4 things to be thankful for. By the end of the month, you should have a big ol' list!

One of the best ways I have found for staying out of depression or for avoiding pity parties is to look to my Father in thankfulness. It's hard to be down when you are counting your blessings.

So today, I am thankful for:

*Little boys with BIG stories!

*Garth Tyree who is 16 years old today

*Time spent with my Beloved this evening

*A warm, snug home on a chilly morning

So, what are you thankful for today?

A Rerun of Sorts

2010-11-01T20:39:00.000-07:00

I was looking back over the blog this morning, searching for some pictures. I never did find the pictures. :-/ However, as I was reading through older posts, this one really spoke to me, and I thought I would re-post it.
I hope you are blessed by this little "re-run".

He Never Lets Go

Even though I walk through the valley of the shadow of death
Your perfect love is casting out fear
And even when I'm caught in the middle of the storms of this life
I won't turn back
I know You are near

And I will fear no evil
For my God is with me
And if my God is with me
Whom then shall I fear?
Whom then shall I fear?

(Chorus)
Oh no, You never let go through the calm and through the storm
Oh no, You never let go
In every high and every low
Oh no, You never let go
Lord, You never let go of me

And I can see a light that is coming for the heart that holds on
A glorious light beyond all compare
And there will be an end to these troubles
But until that day comes
We'll live to know You here on the earth

(Chorus)

Yes, I can see a light that is coming for the heart that holds on
And there will be an end to these troubles
But until that day comes
Still I will praise You, still I will praise You

(Chorus 2x)
You never Let Go by Beth and Matt Redman

We sang this song in church this morning ~ I sang it through tears. Tears of thankfulness. I am *so* very thankful that I am walking this journey with Jethro as a child of God. We are walking through the valley of the shadow of death, and yet, I can, I will praise Him who leads us.

Jethro's heart is in God's hands. He has a heart defect, but it is not 'defective', it is just as God created it to be. God formed Jethro's heart just as carefully as He formed yours or mine, He just formed it different from "normal". God designed Jethro's little heart to glorify Him and it has, it does. I am continually in awe of God's creation when I think about Jethro and his heart. God's design is perfect, and when it's not, He has blessed us with the knowledge and technology to be able to bypass it and make it work anyway. It is a beautiful thing.

I get to see up close and personal how God sustains my son's life. How He guides the surgeon's hands, how He gives wisdom and insight to Jethro's cardiologists, how He gives compassion and grace to the nurses that care for Him, how He gently carries us and calms us and enables us to trust in Him and not worry or fear.

I will fear no evil
For my God is with me

This is the God of the universe ~ creator of Heaven and Earth. This is Jehovah God, all powerful, all knowing, ever present ~ sovereign. And He has chosen me. He has placed my feet upon a hard and narrow path, but He is gently leading me and when I cannot walk, He picks me up and carries me.

And there will be an end to these troubles
But until that day comes
Still I will praise You, still I will praise You

I lift my hands, I lift my heart, I lift my voice all in praise of Jehovah God, my Daddy who deserves the highest praise. I give all thanks to Him.

8 Months Old

2010-10-27T01:03:00.000-07:00

Wow! Jethro is 8 months old. I can't hardly believe it. I am so thankful that not only has he made it this far, but he's thriving!

His nutritionist was here yesterday and he now weighs over 17 pounds. He has been gaining weight well, even though he really hasn't been eating much the last couple of weeks. He has continued to be his happy, contented self, and continues to improve in physical strength by the week, so we weren't too concerned about his eating, but it was reassuring to know that his weight gain has been good as well.

He can almost sit up by himself. He can maintain an upright position for a few moments once you let go, but not for long. It's coming though! He is getting stronger all the time, and for as behind as he was, I think he's doing a pretty good job of getting caught up. Night before last I gave him his almost empty bottle, and he managed to get it turned in the right direction and into his mouth. That was pretty exciting! :-)

Jethro has been going to contata practice with me on Sundays, and he loves to lay on his blanket and listen to the singing. He plays contentedly on his blankie, and squeals and kicks to the music. It is such a joy to watch!

Here he is a couple weeks ago at a football game. :-) He loves his Wubbanub!

He just completed another Holter monitor and hopefully it showed that everything is fine with his heart rhythms. Today his in-home therapist will be coming and she'll be bringing someone from the Idaho infant/toddler program, so I'm hoping that we'll be able to figure out some way to get him more therapy. We were traveling into Spokane every week for therapy, but those out-patient clinics got closed down, so, we just have our sweet gal that comes to the house. I trust that God has it all under control, and when the time is right, if Jethro needs the extra therapy, he'll get it. Although it was very disappointing to lose our Spokane therapists, I am thankful that I know God is in control, and I don't have to fret about it.

How would you feel?

2010-10-15T11:32:00.000-07:00

tal If your child had the #1 birth defect, and then you found out that not only there was not hardly any research going on, but there is very little funding for research? That the one organization you would assume is putting money toward research is only putting .01 of every dollar toward research of Congenital Heart Defects?

Everywhere I look, there is funding for childhood cancer ~ there is much awareness. **Please understand** I am NOT belittling what children with cancer go through ~ or their parents. I know it's bad. My point is awareness. Not "competition" of things wrong with our children.

More children die from Congenital Heart Defects (CHDs) than all childhood cancers combined. And there is little research happening. There is little being done besides playing defense and palliative care ~ and I am very thankful for the excellent Drs, surgeons, nurses and therapists that care for Jethro in this way.

1 in 85 babies born have a CHD. If 1 in 85 children were getting the flu, or the chicken pox or some other illness...it would be considered an epidemic.

I'm including a video done by an amazing young woman that I have had the priviledge of meeting. Jessi just turned 21 and she has HRHS ~ the right side of her heart didn't develop like it should have. She has had several surgeries, and has a heart full of love and compassion for her fellow CHDers. Jethro is in this video. It's long, but those shown in the video are just a miniscule fraction of the number of CHDers out there.

If you ever give money to the American Heart Association, would you consider earmarking it for the Zachary Brooks CHD Endowment? 100% of all monies donated to the Endowment go toward CHD research. The AHA also has the Legacy of Life Endowment , which provides funding for CHD research (thanks, Lisa!).

Make an on-line slide show at www.OneTrueMedia.com

If it were your child ~ how would you feel?

Jethro showing off his "zipper" and his "button".

Quick Post...

2010-10-08T09:28:00.000-07:00

for a quick game! The boys played Mullan yesterday afternoon, and less than 2 minutes into the 3d quarter ended it with the 45 point mercy rule. 46-0 Knights. Way to go, boys!!

Garth running in the winning TD

Jethro had therapy appts before the game. He is doing well. The therapists are very happy...we are seeing improvement in his physical development week to week...just as you would with a healthy baby. :-) We are so very thankful that God is not merely sustaining Jethro, but He is causing him to thrive.

Once again, thank you so much for your prayers. They are precious to us!

Pictures from September

2010-09-27T19:41:00.000-07:00

September has been a full and busy month! We have had 2 birthdays, multiple therapy and doctor appts., football games, company and mud football...oh, and we're building a house! :-P Here are some pictures to share what's been going on this month.

Logan, #33 playing football in Mullan. Our team 45'd Mullan! First win of the season.

Kathleen's 10th birthday. We had some friends over for a tea. :-) It was an enjoyable afternoon.

Progress on the house. Trusses are up, sheeting is on...now for the dormers and interior.

Andie (from Iowa), Josiah and Ezra. Andie was the *BIG* excitement for our month. :-D

Garth running an amazing touchdown! His first of the night against rival Wallace. He also got an inception which he ran for a touchdown.

Jethro (now 7 months!) enjoying a day outside...while his siblings played mud football.

Will (on his 20th birthday) and Andie. In case you can't tell, they have been playing mud football. :-)

Levi and Jade. Yep, they were playing in the mud too. :-)

This is Ruth. She's a sweetie (and muddy!). She's Garth's girl.

Jethro is doing well. He had a cardiologist appt last week, and we don't have to go back until November! That was very exciting news...although I don't know what I'm going to do with all my extra time now! ;-) We are going in every week anyway for physical therapy and feeding and growth clinic. He also has a therapist that comes to the house, but he is far enough behind that we are taking advantage of both. He is growing like a bad weed, weighing in at over 16lbs. Not overly big for a Dole baby, but for a heart baby, he's growing great! I can't tell you how encouraging it is to me to go to the therapists, or doctor, or to talk with his nutritionist and have them be so happy about his progress. God has been and continues to be so very gracious to Jethro and to us.

Football is going well. The middle school team (Mike's coaching again this year) is undefeated so far, and the high school team is 2-2. Both of their losses have been less than 1 touchdown, so, while disappointing, we are encouraged that they are playing well, and continuing to push through the end of the game. The loss this last Friday came after both Garth and their lead running back were injured. The team continued to rally and play hard, but they couldn't keep the lead. I should also share that both of their wins have been 45s (mercy rule ~ for those that don't know, in 8 man football, when one team is ahead by 45 points, the game ends).

The girls are keeping busy with school work and being the water girls for the middle school football team. The little boys...well, they are just busy! :-D

Home Again!

2010-08-29T19:37:00.000-07:00

We are once again home! Friday, Dr. Rick had told us that if Jethro's chest x-ray looked good Sat. morning, and he was tolerating his feeds well, then we could go home. So, I asked the obvious question, "What do you consider 'tolerating'?" He said that Jethro had to not throw up with every oral feed. And, in reality, he would have been fine with Jethro not taking any oral feeds ~ especially since he was tolerating the continuous feed just fine. I was the one wanting him taking his food orally. :-)

So, Jethro threw up his next feed. Then I began to think...not really "began" began, but began to think about why he wasn't keeping his oral feeds down. So, being a Mama with mad medical skills (Ha!), I came up with a theory. Dr. Rick was a bit skeptical, I think, but he agreed that I could hold Jethro's continuous feeds for a certain amount of time after an oral feed ~ depending upon how much he took orally. The next oral feed we did that, and this baby hasn't thrown up since. :-) So, after he had his chest x-ray yesterday morning, Dr. Rick gave us the go ahead to go home!

Jethro and I were both so happy to get home. And the other children (and Daddy!) were very glad to have us home again too. :-) We have some work to do...getting him back to where he was in calories and volume, and we need to get PT set up again, and go back to the cardiologist this week, but we are so thankful to be home once again.

6 Months, 1 Day

2010-08-27T18:59:00.000-07:00

What a cute baby! I get to hear this a lot. :-) And, I must agree. :-D This adorable child is now 6 months old...and looking great! Considering that he has a major heart defect and was born dead. You've come a long way, baby!

Back to being a happy boy...for the most part.

Jethro is doing well. I am hopeful that we will head home sometime during the weekend...really hoping and praying for tomorrow. It will mostly depend on how he tolerates his feeds. His formula has been changed about 4 times since yesterday. Originally, after surgery, they put him on Infaport. This is a formula that has a high percentage of MCT oil...which means that those fats are absorbed into the system, rather than going through the digestive tract. This is given to prevent Chylothorax, which can be dangerous...and they like to prevent things like that. Because of Jethro's defect, that puts him at high risk for developing Chylothorax. However, Jethro had some issues with the Infaport. For some reason, his gut was not moving it through, and at least some of it was sitting in his tummy, curdling. Yeah...I hope you're not reading this, eating supper. So, then he was throwing up this thick chunky stuff. Basically, a milk-fed baby version of a hair-ball.

They did some GI testing, we had a GI consult, and the gist of it is...put him on a different formula. So, we are moving forward. He's on a new formula...now we're trying to get him to keep it all down. On the up side, now when he's throwing up, it looks like what went in. :-)

So, at the moment, I'm feeling optimistic, and am hopeful that we will be going home tomorrow. We'll see ~ this is Jethro we're dealing with. :-)

Day 7 Recovery (Updated)

2010-08-25T10:54:00.000-07:00

Jethro has been throwing up some "sludge". It's icky and thick and doesn't look like anything good. No one has ever seen anything like it. This morning they decided that they will do an upper GI, and we'll go from there. I will probably just add an update to this post later today after we have an answer...or not. :-)

Anyway, because they don't know what's going on, we are here for at least another day. The danger is that what he is throwing up is so thick if he were to aspirate it, it could really be a serious problem.

Prayers for wisdom for the Dr.s and some answers to what is going on would be greatly appreciated.
****************************************************************
So, Jethro had an upper GI which went really well. However, they didn't give him any Barium stuff orally, because apparently the order wasn't specifically written that way, and since he has a G-tube, they just put the barium through it.

He had gone a little over 24 hours without puking...which was good. So, he was getting fussy and I sat with him and gave him a bottle. He drank about 50mL (not quite 2oz), and threw it all up, along with more of the solid icky stuff. Which means that he will have another upper GI (this time looking at the esophagus), and a GI consult tomorrow.

Right now, the earliest we are looking at being discharged would be Friday. Other than that, he had a pretty good day. He didn't get a lot of sleep last night, so the goal today was to leave him be as much as possible and let him rest ~ he's getting to the point of exhaustion where every little thing sets him off, and he just fights going to sleep. :-( Poor little punky needs to be home...Mama needs to know he's ready to be home.

Day 5 Recovery

2010-08-24T00:26:00.000-07:00

It's late, so I will make this short. Jethro is doing well. The central line is out...however, where it was is red and ugly. It looks as though he has developed a yeast infection at the site. He is still receiving some IV meds, so he has a peripheral line in his scalp, but this evening it's beginning to look like it may not be long before it's no good. Have I mentioned that Jethro is hard on equipment? :-)

He is much more himself today. Lots of smiles, he talked to just about everyone that came into his room, he found his feet again and began playing with them. He even took 30mL of formula orally.

Tonight he's thrown up a couple of times, not necessarily a lot of volume, but it's chunky and funny colored. (Sorry if that's TMI!) So, now we're trying to figure out what he's doing. For some reason, this child can't do anything easy or normal. I'm sure that's a quality God can really do something spectacular with, but right now, I don't know what it would be. ;-)

Anyway, if he doesn't do something that would be a setback, I think within the next few days we'll be outta here. Not that I'm holding my breath.

Day 3 Recovery

2010-08-21T17:45:00.000-07:00

This morning, Jethro was fussy. He didn't settle very well, and although he wasn't over the top agitated like he had been on Thursday, he was somewhat agitated. Since Thursday night, he had only been given Tylenol for pain. Late morning, his nurse gave him some fentynal (sp) very diluted and very slowly to help him settle down. It worked beautifully, but not for long. It doesn't have a very long "life". So, the intensivist decided that (understandably), everyone was leary of dosing him with pain meds, but now he was in pain. :-( So, they decided to give him a dose of Morphine and something to help him sleep. It worked wonders.

He has been getting respiratory therapy and that is helping with lung capacity. They also pulled his chest tubes today, and I think that has helped tremendously with his discomfort level.

His feeds are up to 20mL/hour, and hopefully either tomorrow or Monday we can begin working on oral feeds again ~ although going home will not be dependent on that.

Day 2 Recovery

2010-08-20T09:52:00.000-07:00

I will possibly post more later in the day. Jethro (and Mama!) had a rough night. When the shift change happened, he was very agitated. He had been agitated off and on all day. We couldn't really determine if he was uncomfortable, or if it was a reaction to meds. At one point, in the early afternoon, he had quit breathing, and they had to bag him.

So, at shift change, we watched and waited. Mike had gone home and gotten everyone from Logan on down and brought them up so that they could see Jethro, and then we went and had some supper. After I got back, I posted on Facebook and wondered how concerned I should be. There were just several little things ~ the agitation, he was very "rattly" sounding, he hadn't cried since being extubated, he hadn't had his eyes open much, etc ~ that were concerning to me.

The night nurse and I talked about some of my concerns and we watched. She decided that she would take care of her other kiddo first because he was "simple". So, when she got back into our room, she decided that she would give Jethro just a bit of Versed to calm him while she did all of her evaluation stuff. She checked his pupils first, just so that she would have a baseline for him, and then gave him just a little Versed. Almost immediately, he became unresponsive. His respirations dropped into the single digits, he was limp, he just wasn't really responsive to stimuli, etc. She called the charge nurse, and we continued to try to stimulate him and keep him taking breaths. The charge nurse came in and we talked. I told her how concerned I was about how he had been since coming up from surgery. And that he just wasn't showing any signs of any sort of "normal" for him. The cardiologist had been in several times yesterday, but she had not seen him when he was in one of his "non-responsive spells" (I do not want to give the wrong impression of his Dr. She was concerned, and made orders accordingly so, but things did dramatically change after she left). So, then we called in the Intensivist and asked what he thought.

He decided that Jethro should go down and have a CT done. He thought from our description of how he was behaving, that his little brain just wasn't telling his body appropriate responses to pain or pain meds. But, since we were all concerned/worried about how he was doing, he felt a CT was the way to go.

The charge nurse got him all ready to transport (no simple feat, with several IV pumps and numerous tubes and cords attached. And then he decided he didn't want to breath. :-/ I was slapping his feet and shaking him, the nurse was pinching him, and he just didn't really want to breath. They called the Dr. in ~ the nurse said she was worried about trying to transport him without intubating first. They decided to give him some Narcan (it reverses the effects of narcotics). And it was like someone flipped a switch. Jethro opened his eyes and his pupils were dilated almost to normal, he coughed and quit being all gurgly sounding, he started to cry and he began to breath better.

Apparently, it is a quick acting drug, but I fully believe it was God answering the many, many prayers that were going up on Jethro's behalf. I'm not sure the drug even had time to get into his little body from the IV tube before he was responding. It was instantaneous. The Dr and nurses were amazed as well. We went down for the CT and all looks good. Once we got back up to his room, his temp had dropped some, and he was resting peacefully.

I did stay with him until about 1 am, just for my own peace of mind, but he was fine. And now we know that he is hyper-sensitive to pain meds.

This morning, he has been awake a fair amount, and he is much more himself than he was yesterday. It's good to see my baby. :-)

Please continue to pray for a good recovery for Jethro. And give thanks along with us that God has placed us in the midst of outstanding Dr.s and nurses ~ and that He is answering prayers and keeping Jethro in the palm of His hand.

Day 1 Recovery

2010-08-19T09:11:00.000-07:00

Immediately following surgery ~ still intubated

Jethro did well yesterday and last night. He did spike a fever in the night, but there were no infection markers in his labs, so the nurse thought that it was a "rebound" fever from being on bypass.

Extubating him went well, for the most part. It made him quite unhappy to have that tube pulled, so his sats dropped to 19 8-O ~ not good! When the night nurse came on, his day nurse said, "Jethro is a baby with a 2-yr old attitude!" I suppose that if anyone has a right to pitch a fit, it's a baby who's had to go through a few surgeries.

This morning, he is looking good, and Dr. Sunshine wrote orders for starting to feed this baby, and to begin both Speech and Physical therapy. Everyone seems pretty happy with how Jethro is doing ~ but they are also keeping in mind that he has a tendency to do well, and then take a dive. :-P

24 hours after surgery ~ extubated and looking good!

His blood pressure is higher than they would like it, so that is a prayer request, and his lungs need to rebound from surgery ~ right now he is o2 dependent, so that is another prayer request. Dr. Sunshine wrote for respiratory therapy as well, to help get his lungs back in shape.

The Glenn

2010-08-18T08:25:00.000-07:00

Jethro has been in surgery for about 5 minutes now. I just received a call from one of the nurses, and getting him under sedation went well, and so far, everything is looking good. Please pray for his safety during surgery and for steadiness of hand for the surgeon, Dr. Worrall.

11:19 am ~ Nurse called from the OR, Dr. Worrall is done with the procedure, in a few minutes they will begin taking Jethro off the heart-lung bypass, once off the bypass, they will do an echo. If everything looks good on the echo, they will begin closing. So far, Jethro has done well.

11:54 am ~ Dr. Worrall is happy with how everything looks on the echo, so they will continue closing.

1:12 pm ~ He's done!! Dr. Worrall just came in and told us everything went well. My baby has sats in the *80s*!! He's pink! We should get to see him in about 1/2 hour.

Please join us in praising our Heavenly Father in His goodness to our sweet Jethro.

Once again, thank you so much for your prayers on our family's behalf.

5:40 pm ~ Jethro is doing well. They will likely take the vent tube out soon. He does have a slight fever of just over 100, prayers that it would not go higher would be appreciated.

Surgery in the Morning

2010-08-17T22:22:00.000-07:00

Jethro's surgery is in the morning. He is scheduled for 7:15. Please be praying.

Tomorrow, I will have one post that I will edit throughout the day to update.

Silent Saturday ~ Summer's First Bounty

2010-08-14T05:00:00.000-07:00

Getting Closer

2010-08-13T07:29:00.000-07:00

Wow. It's Friday. Today I go and pick up the Lovenox shots for Jethro. Tonight will be his last dose of Coumadin before surgery, and then Sunday, we start the Lovenox shots. I really dislike giving my baby shots, but it is a teeny tiny little needle, and it's just a little bit of meds, so it's not too terribly bad. However, he always looks at me, like, "you're not supposed to be doing this to me, Mama!" :-( I am very thankful that so far, God has blessed me with the fortitude to do whatever I have needed to for this precious child. And make no mistake, lots of prayer goes in to each new skill!

Jethro's nutritionist was here yesterday, and she is thrilled with his growth. He is now in the 50th percentile in overall growth, and I think she said 90% in head growth. She said that his growth defies reason. Heart babies just don't grow like he's doing. We know that it's all God. His hand upon Jethro has been evident from the beginning.

Tuesday morning, we go in to the surgeon's office and then following that appointment, we'll go to the hospital and be admitted. I believe they are admitting him to the PINT unit, not PICU. All the pre-op "stuff" will be done ~ any blood tests, meeting with the cardiologist, etc. Then Wednesday morning at 7:15am, he goes in for surgery. I am thankful that they will admit him a day ahead of time. If they didn't we would still end up spending the entire day in town, and probably get a hotel room for the night before, but because of Jethro's overall fragility, they don't even hesitate to admit him ahead of time.

Jethro has become quite the happy baby. He is very engaged with his surroundings and loves to coo and chatter at anyone who will stop and talk to him. Daddy says that Jethro is addicting. You can't just walk away from him ~ he really holds your attention. One of his favorite things to do is blow raspberries. Sometimes, he gets so much foam going that he looks rabid! :-D

Please pray that he stays healthy over the next few days. Pray for wisdom for the surgeon and cardiologists, and a steadiness of hand.

Thank you so much ~ your prayers are invaluable to us!

Worship Wednesday ~ What Grace Is Mine

2010-08-11T10:02:00.000-07:00

I first heard this song last year shortly before Resurrection Sunday. I totally fell in love with it. Keith and Kristyn Getty have a way with words that encourage a worshipful heart.

This song has a lovely, gentle rhythm to it, and the words are beautiful. It speaks of deep and wonderful truths. God calls through the dark night to find our distant soul, mercy from His scars that pleads for me, He gives us hope that never dies, my soul soars beneath His wings ~ My Savior lives and reigns FOREVERMORE!

I take bow my heart, take up my cross and follow Him.

Oh Lord, may this be the reality of our lives, and not just words we sing.

Jethro Update

2010-08-06T21:46:00.000-07:00

Wednesday, Jethro had a brain and heart MRI. He had to be sedated and intubated for the procedure, so he was not allowed food after 6:30 in the morning. I was able to give him Pedialyte until about 10:30. Check-in was at 12:30. We went in early, because he also needed to have his INR (measures the coumadin level in his blood) checked. They were 2 1/2 hours late getting him in for the MRI, so it was a long day! He kept the nurse anesthetist on his toes, but they said he did well. He took 10mL of milk while in recovery, so I was very happy about that. Poor little kid must have been starving, and he was a little hoarse sounding from being intubated, but it was a milestone for his oral feeds! It was 7:30 before we got away from the hospital.

Yesterday, he had an appointment with feeding and growth and Karen was very happy with how well he's doing. He's taking between 4 and 5 ounces orally per day now. After watching him, she thinks it's mostly an endurance issue that's he's not taking more, so we are hopeful that after his surgery when he is better oxygenated, he will begin to take more by bottle.

Today, we had our first in-home physical therapy session. He's had PT up at Sacred Heart, but we haven't been able to connect with the gal that is supposed to come here. We've had appts set up, but every time he's ended up in the hospital. So, today's appt was only about a month and a half or two months in coming. We visited some, she observed him, and then did an evaluation. Mostly, physically, he's at about the level of a 3 month old. He does have some things he does that are spot on age wise, but he is definitely behind. However, when you figure in the amount of time that he's spent in the hospital, then it puts him right at 3 months. Overall, it was an encouraging visit. He'll have one more appt with her before he's admitted to the hospital for surgery.

Right now the plan is to go in the morning of the 17th, and he'll have an appt with the surgeon, and then we will head across the street to the hospital to be admitted. On the morning of the 18th, at 7:15, he'll be in surgery. Here is a post I wrote not too long ago that has a link that explains what this next surgery will be.

He's also having some mucous issues. As best we can tell, just from observation, he is not swallowing his spit. It would seem that it is draining down his throat, but not getting past the esophagus. After about so much collects there, it gags him and he throws up. Poor little punkin. He strains and strains to get it out. I have never seen a baby that struggles so hard to throw up. And he's not necessarily throwing up the contents of his tummy. So, I'm hoping that the next time we see the Dr. he might have some suggestions for ways we can help him.

So, that's been our week. Just a little busy. :-) Please pray that Jethro would stay healthy and this next surgery can go forward as planned. His O2 sats are all over the place, it doesn't really even matter how much oxygen he's on. And, he's getting tired of the cannula. He manages to get it out of his nose, and when we place it back, he really hollers about it.

Blessings upon blessings (Edited!)

2010-07-29T14:13:00.000-07:00

This week was the beginning of work on our house. We have decided to rebuild. My dear friend, Julianne , and I sat down and worked up a floor plan that would work better for our family than the old house, but still fits on our existing basement. We ended up with a story and a half design, utilizing the basement as living space too. I have been spending a good part of this week reworking the kitchen floor plan (so far, I have 5 different plans! Decisions, decisions, decisions...)

Our original plan was that we would buy used cabinets from someone who was remodeling. But, Monday we stopped in at Lowe's and they have some lovely stock cabinets...which now I am hoping to get for the kitchen. However, we do still need to go to Ziggy's and see what they have.

God has been providing things for the house that are over and above anything I could have hoped for! So far, He has provided:

A full size fridge and freezer unit. It consists of a full size fridge and a full size freezer. They sit side by side and look like one unit. I am so excited to have a full size freezer *in* my kitchen!
A commercial stove. This is something that Mike and I had talked about, but I needed to find a screamin' deal on one for it to be doable. The stove that God provided, has a 24" griddle, 4 burners, a 30" oven and pan storage! It was a *great* deal, and the guy even lowered the price a bit when we went to look at it!
Three tall windows (don't know where they are going quite yet!), that are gridded, and perfect for someplace in my house. :-)
A vanity for the kids bathroom. The original plan was to have 2 vanities, one on either side of the bathroom, but now it will be one long vanity on one side and a closet on the other. It's a 5' vanity. It's oak (it does need to be refinished, but good quality!), and it was well under $100! If you have recently looked at bathroom vanities, you know what a blessing that is!
I found 2 matching light bars for the kids bathroom for the exorbitant price of $1.17 ea!!
God provided me with a lovely new Kohler kitchen sink. We found it at the Habitat for Humanity store for $25. It's about a $200 sink. I don't believe it's ever been installed ~ there were no tell-tale signs of it.
I shamefully forgot my two new lights this morning! We had decided that we would get nice, but inexpensive lighting for now...changing them out for nicer lights as we could afford to. The exceptions were: I wanted a nice ceiling fan/light fixture in my living room ~ because it will be the room you enter the house in, the pendants over the breakfast bar, and the dining room chandelier. I *love* Craftsman styling, and although we couldn't afford to build a "Craftsman" house, I am trying to incorporate Craftsman details where I can. I also love stained glass. Last night on Craig's List, I found a Craftsman style stained glass chandelier AND a ceiling fan with a stained glass Craftsman light! Both much cheaper than the "splurges" I was looking at at Lowes. Thank you, Lord! Mike picked them up this morning.

I really did not want to rebuild, everyone we know who has built a house, has ended up with lots of stress. And I really don't need 'house' stress right now! However, we do believe that is the direction God is leading us. So, I trust that He will be in the midst of the process, and I won't get *too* stressed about it. :-) He also provided a friend, who is a contractor/builder who is going to be our general contractor on the job...so that will relieve some of the stress.

As I was reflecting on the blessings He has given us so far, I decided that I needed to share them and give praise and thanks to my Heavenly Father. He provides above and beyond our needs. Thank you, Lord!

It's looking like Jethro's surgery won't be until the week of the 16th of August. I don't have a set date yet, but most likely Wed, Thurs, or Friday of that week. Please pray that he will be healthy, and that everything moves forward as planned. Thanks!

Worship Wednesday ~ The Stand

2010-07-28T05:00:00.000-07:00

"I am severely afflicted; give me life, O Lord, according to Your word! Accept my freewill offerings of praise, O Lord, and teach me Your rules." Psalm 119:107-108

May this be our heart attitude.

6 Years Ago Today...

2010-07-25T21:22:00.000-07:00

I was thrown into the deepest, worst grief I could imagine. At about 6:45 in the morning, our precious son, whom we had waited so patiently for, was born into the arms of Jesus. The first moments of horror, as I delivered a lifeless baby, whose cord had broken just moments before birth...The frantic calls for prayers, praying ~ asking God for a miracle. Pleading with Him to not require this sacrifice of me. The realization that He would not answer those prayers in the affirmative, but that our feet had been placed on the path of grieving. The trail that runs through the Valley of the Shadow of Death.

Those first moments when we were surrounded by friends and family. Those who loved and knew us best cleaning up Tucker's precious body, dressing him, holding him, loving him and us.

The most horrible, precious day of my life. A day when God showed up. A day that began a journey of drawing nearer my Father ~ who had brought this "tragedy" into my life because He loves me. Because He desires to mold me into the imagine of His Son. A day that became the start of tremendous spiritual growth on my part.

Since that day, I have learned much of the sovereignty of God. I have learned much of His faithfulness. Of His sustaining power. Of the feel of His arms surrounding me, as I crumble and fall, and can't make it past the boulders in the lane. He lifts me up and carries me, when I can go no further myself. I have learned much of the fickleness of my own character, and longed for the peace that only comes from looking into my Father's eyes and saying, "I trust You." To finally come to that place of peace and contentment. Hard won, but oh so worth it.

I have pondered much that time in these last 9 months. Becoming more and more thankful that God brought us into and through that time. As we once again entered stormy seas with Jethro's diagnosis, I was able to look into the face of my Savior and step out of the boat. There have been times when I have looked away from His face, only to begin sinking ~ drowning in the circumstances I find myself, but then I look again to His face and all is well. I long for him to tell the storm to be still; but instead He looks into my eyes, and says, "Be still, know that I am God. Trust Me." And when I do that, I find that it is even better than if He had calmed the storm.

I long to hold my son. I would love to have the privilege of raising him up to be a godly man, to watch him run and play with his brothers and sisters, to hug and kiss him and to receive all those sweet, snotty, dirty hugs and kisses that little boys give. And yet I know that if his life would have glorified God more than his death, he would be living now. In a way that I cannot comprehend, Tucker's death glorified God more than his life would have. I do not understand. But I trust. I know that God sat me on His lap that morning six years ago, and many times since then, and He wept along with me. Knowing and understanding the pain I was in. How my heart was shattered and how broken I was. And then He took those tears and placed them in a bottle. I cried many, many tears but now, 6 years later, I don't remember them all. But my Father does. He remembers each one.

Today has been a sweet day. Not melancholy as I anticipated. But a day to be thankful. A day of remembrance. A day with chocolate cupcakes to remember a brother that won't be known until Heaven someday. A day to remember that this life is but a breath, and I will have eternity with my son ~ worshiping the One who created us both and loves us dearly.

I'll leave you with a song that accompanied much of my deep grief. There is no video, it's just audio, but it is a precious song ~ and I'm certain if you have lost a child, it will touch your heart.

I love you, Tucker Joe, play in peace sweet boy.

Tucker Joe Dole

July 25, 2004

Into the arms of Jesus

Home

2010-07-20T23:17:00.000-07:00

The viral screen came back negative, but they decided not to take any chances. So, the heart cath and Glenn have been postponed for at least a couple of weeks. So, they discharged him today and we are home.

While I don't "look forward" to surgeries, the fact is that he needs them. And we were prepared and ready for this, so it is a bit of a let-down that it's not happening. However, it will give him a couple more weeks to get better established with his oral feeds ~ which will hopefully mean that getting intubated won't be as much of a setback.

And, I know that God is in control of all of this. If this week was the best time for his surgery, then I know we would still be in the hospital awaiting Thursday. But we are not. For whatever reason, God has a better time for Jethro to have the Glenn. So, we will wait for His timing.

Hopefully an Eventful Week

2010-07-20T09:29:00.000-07:00

Jethro and I are at the hospital. He was admitted yesterday. Today is supposed to be a heart cath procedure, and Thursday is to be the Glenn. Which I have been calling open heart surgery, but technically it's not. He will be put on the heart/lung bypass, but they do not stop the heart for this procedure.

Anyway, Jethro has decided this is a good week to get his first snotty nose. This could pose a problem for the procedures scheduled this week. They do not want to open him up with a nasty viral infection going on. They have taken a viral panel, and we are waiting on the results. Then, Dr. Carl will make a decision on whether or not to proceed.

Please be praying that whatever is going on...cold, or allergies...that it will not delay the plans for this week. Jethro is getting big enough that his oxygen sats are a continual struggle. He really needs to have the Glenn done.

I do have a praise! Since our last feeding and growth appointment, Jethro has decided he likes taking a bottle. Day before yesterday he took 78mL of milk and yesterday, he took 85mL! That is right around 3 ounces. It may not seem like much, but for a baby who has never been orally fed, it's huge! And, just last week, I couldn't hardly even get him to latch onto the bottle nipple. I am so excited and thankful...it looks like we could be on our way to Jethro taking his nutrition orally. Thank you, Lord!

Worship Wednesday ~ Born Again

2010-07-14T05:00:00.000-07:00

Do you know what it is to feel the transforming power of Christ? Have you come face to face with the reality of your sin and how desperately lost you are? Do you feel like it's all hopeless?

There is One in whom we can always find hope. One who will take your sins and make them white as snow. One who will take every ugly thing in your life and make it beautiful ~ in a way you will probably never understand. Who will draw you to Himself and show you what truth and faithfulness look like.

Look to the nail scarred hands. They are reaching out to you. Let them pull you in and hold you close. Turn and run to the One who can give you new life. Life everlasting. Know what it is to be born again.

Worship Wednesday ~ By Your Side

2010-07-07T05:00:00.000-07:00

I hope to do this regularly. On Wednesday's, I am going to post video's for worship songs that touch me deeply and facilitate my worship of the Lord. Maybe it will introduce you to a new song, maybe it will be a song you are familiar with. Either way, I hope that it enables you to worship, and blesses you mid-week. :-)

This is a song by the band, Tenth Avenue North. It is a song I sing to Jethro all the time. I love this song. It speaks so eloquently of our Savior's love for us...and as a Mama, much of it speaks to my heart ~ I would desire to always be there for my children in this way...even though it's not possible. It has meant much to me since Jethro was born. The Lord has truly given him life...and that is something I always want to keep in focus.

I pray that you would not only enjoy "By Your Side", but that you would worship He who *is* by your side as you listen. Blessings to you.

Jethro's surgeries

2010-07-05T16:15:00.000-07:00

I found a website that gives a pretty good, easy to understand explanation of the 3 surgeries that Jethro will go through. The surgery he had at 10 days was to place the BT Shunt ~ in addition to removing part of his right atrium, patching the tricuspid valve and a couple other things. The surgery that is scheduled for the end of the month is the Glenn procedure.

You can read about them here. Jethro is scheduled to be admitted to the hospital on the 19th. On the 20th they will do a heart cath to check out vein pressure, look at the pulmonary artery to see if it needs work, and they will also check out his lungs. Then, on Thursday the 22d, he will have the Glenn procedure, which will be open heart surgery.

We would appreciate prayer for the drs and surgeons that will be working on Jethro during those procedures. Also prayers for Jethro to tolerate the heart cath and surgery well, and that he would recover well.

A Special Visitor

2010-07-05T08:23:00.000-07:00

Yesterday, we decided to stay home and have a quiet day. I am gone so much with Jethro, that I have become very reluctant to leave home if I don't *have* to. I had picked up a couple of "new" movies the other day, so we spent the afternoon watching movies while Daddy slept. Horton Hears a Who and Roman Holiday were our afternoon's entertainment.

As Roman Holiday was ending, I looked out the living room window to see an unexpected "guest".

He just wandered around in the field next to the house for probably 15 minutes or so.

Not a very big bear, we figured probably just a yearling. Still, I made sure all the children were in the house.

He was a very cute little bear. And he provided some excitement to our lazy afternoon.

What a blessing

2010-06-25T09:27:00.000-07:00

This isn't a long, thought out post. :-) I am just feeling thankful this morning for the CHD community. Through the internet, God has provided this wonderful network of adult CHDers and parents of CHD kiddos to us. What a blessing this is! At a time in our lives when we don't see or hear much from those who have been close to us, God has brought kids and parents who understand what we are going through, who have walked this path ahead of us, who know the emotional toll it takes, and, praise God, who are willing to step in alongside and give comfort and encouragement!

This is a lonely road...or at least it has the potential to be, but God is faithful. Some of these online folks are even pretty local to us, and I have had the pleasure of meeting them in person and beginning some wonderful new friendships ~ something I need right now. One sweet lady comes and visits with Jethro and I almost every time we are in the hospital, which is wonderful ~ the days get awfully long when we are there.

Anyway, I posted something on Facebook this morning, and a heart mom jumped right in with an, "I know what you're talking about/where you're coming from" comment, and I just felt so blessed. For one, to know that I'm not the only one affected by all that is going on around me the way I am, and two, to know that mom's who I do not know INR, and will likely never meet, care about what is going on in my life because God has brought us together....through this wonderful thing called the internet. :-) I do hope/pray that as I have the opportunity, that I too am a blessing to those that God has brought into my life.

Why I don't update the blog more often. :-P

2010-06-24T08:51:00.000-07:00

(NOTE: I started this post on Tuesday.)

"The heart of man plans his way, but the Lord establishes his steps." Proverbs 16:9

I think this is my new life verse. I even found a beautiful wall hanging with this verse ~ which is now hanging in our bedroom.

So what does that have to do with the blog? Well, I updated yesterday, and the "plan" has changed a couple of times since then. If I was more on top of updating the blog, there would be about 4 posts to each day. :-P

I am so thankful that I know the above verse is true. I am able to just "go with the flow" when it comes to Jethro's care, because ultimately, I know that it's not me or the Dr.s who are guiding the whole thing. We "plan the way", but God is "establishing our steps".

It is so comforting to know that God's got it all under control. If we are in the hospital, I trust that we are because that's where he needs to be. Whether it's because we're going to have an issue with atrial flutter (like when he had his g-tube surgery), or because we need to know that our home oximeter isn't overly reliable (like we found out this time). Some things seem significant, and some not so much, but they are all pieces to the puzzle that is his care.

So, to make up for not being totally "on top" of updating the blog, I did throw in a new picture of Jethro. :-)
Thanks so much for the prayers, they mean everything to us.

And so it begins...

2010-06-21T15:11:00.000-07:00

Over the weekend, Jethro's 02 sat rates were not good, even though we continued to up the amount of oxygen that he was getting. He's on 3L now, and most of the regulators only go to 4 ~ just to give you an idea. So yesterday, I talked with Dr. Carl on the phone, and although we had an appt set for Tuesday, he did not want us to wait that long to come in. So, this morning we headed for Spokane and the cardiologists. I packed my bag last night, because I figured if they were having us make a special trip, we wouldn't be coming home.

When we got to the office, they sent us downstairs for a chest x-ray, and then back up to the cardiologists. Dr. Carl came in and looked him over, and said that he was going to admit him (surprise, surprise, surprise!), and that they would do a heart cath this week, and surgery was tentatively scheduled for Friday. They could change their minds about surgery, but we can't continue on with these oxygen sats. As Dr. Carl said, "We've been through too much with this baby to take any chances." AMEN!

He then wanted to know what all Jethro is doing...I told him that he is programming computers ~ but he didn't believe me. :-) Anyway, he is very encouraged by how he is doing. I think he's pretty close to right on for an almost 4 month old. He is very engaging, he smiles, and talks and coos. He tracks with his eyes and will turn his head to follow something that has his interest. I haven't gotten him to laugh or squeal yet, but that will come.

Prayers for Jethro to stay stable until surgery, for wisdom for the Dr.s, and for him to tolerate procedures well would be greatly appreciated!

The Daddy of our house

2010-06-20T14:52:00.000-07:00

A Daddy is someone who loves you unconditionally, who is there for you when you are down, who rejoices with you when you rejoice, who cheers you on when you are striving. A man who lovingly guides and directs, who disciples and when necessary, disciplines.

My children are blessed with such a man.

Thank you sweetie, for all you do. We love and respect you.

Happy Father's Day.

A Gem of a Find

2010-06-19T19:54:00.000-07:00

Today was the annual city-wide yard sale in Plummer. I picked up several things for the baby and the little boys, but my find of the day were these...

A lovely blouse in pristine condition. Beautiful lace around the collar and down the front. There is also lace at the cuffs. There is ruching (?) across the front of the blouse.

Here are some close-ups from this blouse.

Here is the second blouse. It has some damage around the bottom from the side seam to side seam around the front. The tag says Geisha waist.

Here are the close-ups of this blouse. It is so very lovely. I wish it were a wearable size!

This is a beautiful, simple chemise. It is actually a size that could be worn.

Here is a close up of the embroidery on the chemise.

Although these are frail antiques, they really are in wonderful shape. I also got a couple other things of the same era, but I have no idea what they are. :-) And, all for $3!

I truly have no idea what I'm going to do with them, but they are so very lovely, I couldn't resist. Our church is celebrating it's 100th Anniversary next month, and I will probably put them on display for that. Other than that, they will probably go into storage until I once again have a sewing room.

He Never Lets Go

2010-06-13T20:20:00.000-07:00

Even though I walk through the valley of the shadow of death
Your perfect love is casting out fear
And even when I'm caught in the middle of the storms of this life
I won't turn back
I know You are near

And I will fear no evil
For my God is with me
And if my God is with me
Whom then shall I fear?
Whom then shall I fear?

(Chorus)
Oh no, You never let go through the calm and through the storm
Oh no, You never let go
In every high and every low
Oh no, You never let go
Lord, You never let go of me

And I can see a light that is coming for the heart that holds on
A glorious light beyond all compare
And there will be an end to these troubles
But until that day comes
We'll live to know You here on the earth

(Chorus)

Yes, I can see a light that is coming for the heart that holds on
And there will be an end to these troubles
But until that day comes
Still I will praise You, still I will praise You

(Chorus 2x)
You never Let Go by Beth and Matt Redman

We sang this song in church this morning ~ I sang it through tears. Tears of thankfulness. I am *so* very thankful that I am walking this journey with Jethro as a child of God. We are walking through the valley of the shadow of death, and yet, I can, I will praise Him who leads us.

Jethro's heart is in God's hands. He has a heart defect, but it is not 'defective', it is just as God created it to be. God formed Jethro's heart just as carefully as He formed yours or mine, He just formed it different from "normal". God designed Jethro's little heart to glorify Him and it has, it does. I am continually in awe of God's creation when I think about Jethro and his heart. God's design is perfect, and when it's not, He has blessed us with the knowledge and technology to be able to bypass it and make it work anyway. It is a beautiful thing.

I get to see up close and personal how God sustains my son's life. How He guides the surgeon's hands, how He gives wisdom and insight to Jethro's cardiologists, how He gives compassion and grace to the nurses that care for Him, how He gently carries us and calms us and enables us to trust in Him and not worry or fear.

I will fear no evil
For my God is with me

This is the God of the universe ~ creator of Heaven and Earth. This is Jehovah God, all powerful, all knowing, ever present ~ sovereign. And He has chosen me. He has placed my feet upon a hard and narrow path, but He is gently leading me and when I cannot walk, He picks me up and carries me.

And there will be an end to these troubles
But until that day comes
Still I will praise You, still I will praise You

I lift my hands, I lift my heart, I lift my voice all in praise of Jehovah God, my Daddy who deserves the highest praise. I give all thanks to Him.

Happy to be Home

2010-06-11T22:46:00.000-07:00

We're home! Jethro's sats have continued to be all over the place. From the high 90's ~ very unusual for him, clear down into the 50's, even on oxygen. However, they were not doing anything for him at the hospital that we can't do here at home, so today they sent us home. :-) He is on oxygen, and we will have to monitor his sats more closely than we have been, but it's all worth it to be here with the rest of the family.

The older Jethro gets, the more I love and appreciate this sweet place called: HOME.

Back in the Hospital

2010-06-09T21:43:00.000-07:00

Tomorrow was to be a long, full day of Dr. appointments. Not anymore. :-/ Monday started three days of low sats for Jethro...yesterday I didn't get real good readings with the oximeter, but he was very mottled looking. This morning, he was pretty fussy when he woke up and very dusky looking. When I put the oximeter on him, his sats were in the low 60's and even down to 58 (you and I hang out around 100). So, we put him on oxygen and I called the cardiologists office. They weren't open yet, but I wasn't overly concerned, so I just left a message at the nurses desk, knowing they would listen to it when they got in.

Sure enough, I received a call back from the nurse, saying that Dr. Carl wanted me to bring him in to be seen. So, we got our stuff together and left for Spokane. They just had us go through the ER, and Dr. Burg, who is on call, came down to see us. She was concerned that Jethro is possibly outgrowing his shunt, which would mean surgery, possibly as soon as next week. So, she admitted him to the PICU to be watched for a couple of days.

After we got up to the PICU, they did an extensive echo, and the shunt looks good. We are not sure why his sats are dipping like they are, but we are at the hospital for the next few days, so they can keep an eye on him and try to figure out what's going on.

Once again, I have to say that I love our cardiologists! They are what I consider appropriately concerned about things. They are all for pushing Jethro to see what he will do, but they are also cautious with him. I have learned that if they are not concerned about something, then I likely do not need to be either, but if they are concerned...I definitely am! :-)

So, a prayer request would be that if something is wrong, that it would show itself while we are here at the hospital. Of course, my preference would be that nothing is wrong! I told Mike that I think he's just lazy...he heard me tell somebody that the physical therapist was coming today, and he didn't want to work..."um....I think I can't saturate very well, Mom I better go to the Dr.s!" :-P

Confessions of a Heart Mom

2010-05-30T21:14:00.001-07:00

Hi. My name is Tracy, and I'm a heart mom. I was thrown into the world of Congenital Heart Defects (CHD) in late October 2009, when an ultrasound revealed that there was a problem with our 10th child's heart. One of the most shocking things that I have learned is that CHDs are the #1 birth defect, affecting approximately 1 in every 100 babies. CHDs also kill more children than any other birth defect or cancer. I have been having babies for 20 years and I never knew that ~ until I had a baby with a CHD.

Some babies have CHDs that are "easy" to live with and some have CHDs that are incompatible with life, and some are somewhere inbetween, but they all change your life as a parent and as a family. Our son has an incompatible with life diagnosis. Only by the grace of God and the hands of skillful surgeons willing to take a risk is he alive today.

One of the many ways that a CHD changes things is in the hopes and dreams you have for your child. Now, instead of dreaming of the day when he grows up and marries, I think of tomorrow and pray he's well enough to stay home. My prayer is for him to survive and have a good life, and although I still certainly hope for a long life for him, I know the reality may be much different. Many babies born with CHDs do not live to see their first birthday. And that knowledge changes things. I cherish each day with him in a way I never did with the other children. Not because I love him any more, but because the reality that his life will be short is so very *real*.

Before, our lives were filled with the rhythms of home ~ cooking, cleaning, school, reading stories, caring for babies...now, they are filled with Dr appointments, hospital stays and charting and dosing out medicines every day.

Before, we raised our children, bandaging their owies and nursing their illnesses knowing they would once again be whole. Now we have entered the world of Palliative care, knowing that no matter what is done, this son will never be well, he will never be whole. There is no making this better.

And yet, I am thankful. I am thankful for the wonderful people who we have met on this journey: the ultrasound tech who did the majority of Jethro's ultrasounds, and likely saved his life, the outstanding, caring cardiologists who look after our son and his heart, the wonderful nurses who care for him and remember him from one hospital trip to the next, and the supportive, knowledgeable, passionate folks who make up the CHD family. I am thankful for my son, a warrior in a battle that is likely not winnable. I am thankful for the privilege of being his Mama and walking this path with him. To see how God has used this one, small life to touch so many and bring them together in a common cause. But mostly, I am thankful to my Heavenly Father, for loving us enough to walk us through this valley. For drawing us close to Him when we are afraid and hurting, and bringing us peace and comfort in the midst of it all.

"Even though I walk through the Valley of the Shadow of Death, I will fear no evil, for You are with me." Psalm 23:4

Jethro Storms Dole
February 2010
Born with Ebstein's Abnormality of the Tricuspid Valve and Pulmonary Atresia

Home again, home again, jiggety jig...

2010-05-29T23:33:00.000-07:00

We got to come home today! Only a week later than what we had hoped for...but, on the plus side, it's only a week later than what we had hoped for. ;-)

Jethro is doing well, although the little stinker threw up his medicine that helps to regulate his heart rhythm. So, after a couple of phone calls, we were somewhat back into the routine and rhythm of home life. We'll go back in Monday to get his INR checked and pick up some of his meds that weren't ready when we were leaving, and begin again the rounds of Dr. appts...a little later in the week.

Still in the Hospital ~

2010-05-28T14:14:00.000-07:00

Ugh. As I was typing the title to this post, my computer let me know that I have used it before. :-P Oh well. We were really hoping to be discharged today. Now we're really hoping to be discharged tomorrow. :-/ I have a sneaking suspicion that if Dr. Jensen had been on today, we would be on our way home, but one of the other cardiologists was on today, so here we sit. Please do not misunderstand. They are all wonderful Dr.s and we are so appreciative of them and the care they give Jethro. However we have worked with one or two more than the rest, and so I believe they give a little more leeway when decision making, just because they know us a little better.

However, I am trusting that it's not this Dr or that Dr who is guiding this whole process, but God. And we are where we need to be. Whether it's so that when we do go home we know that Jethro is stable, or because he's going to have some more problems...I don't know, but I do know that when home is the best place for him to be, then we will be there.

So, why are we still here? Jethro was stable throughout yesterday and last night. His heart rhythm looks good for him. But, his INR (coumadin) level was on the high side and so, Dr. G felt more comfortable with us staying an extra day and having that level re-checked in the morning. The whole INR thing is a delicate dance, and definately not an exact science. We have to adjust his dosing pretty much every time he gets his levels checked, which varies from once to twice a week.

We are also working on feeding issues. When you're 3 months old, and have never taken much, let alone the majority of your nutrition by mouth...this becomes something you have to learn. He does not have an oral aversion, which is a huge blessing, but he's not too sure about stuff coming out of a nipple and going down his throat. However, they did a swallow study this morning (very interesting to watch!), and he swallows well. So, we are just going to go very slowly with him. We are going to start with a bottle-less nipple and just use a syringe to add liquid to it. As he gets used to that and takes more milk that way, we will move him toward a bottle. Please pray that this process goes well.

So, that is where we are at the moment, and what we are doing. :-)

Track season is over. Levi ran the 110 and 300 meter hurdles at State. He did not make it out of the preliminaries for the 110, although he did take 4th in his heat. He took 7th overall in the 300 hurdles, just missing getting a medal by 1 place. He was disappointed, but his Dad and I are very proud of him. Lakeside does not have a track for these kids to practice on, and they only have 2 hurdles that they set up on the football field, when you then consider that Levi is built like a football player and not a hurdler...well, he did great!

Living on the Fly

2010-05-26T13:33:00.000-07:00

I am not, by nature a very scheduled type of person. However, this is getting ridiculous! Monday evening, we moved back over to the step-down unit. We were there just over 24 hours, and now we are back in the PICU! Last night, about 6:30 or so, Jethro's heart started up it's hinky rhythms again. Not as bad rate wise, as it was Friday night, but not good.

Yesterday he was also apparently boycotting his cardiac meds, because he threw them up in the morning, and almost immediately after getting his evening dose of Amiodarone, he threw that up. So, Dr. Jensen decided that he needed to be in the PICU and receive at least a dose of meds via IV ~ which they don't do in the step-down.

So, I have absolutely no idea when we are going to get to head for home...not even sure where we'll be in the hospital come night shift time. :-P Jethro did have a good night, and he's been fine today, but they are going to shoot for some sort of stability before they discharge him. On the plus side, Dr. Jensen & Co., know that we are competent and capable, so that makes them a little more lenient in when we can go.

We are definitely learning to live moment by moment with this boy.

Back in the Step-Down

2010-05-24T19:42:00.000-07:00

Well, Jethro and I are starting to feel like a couple of bouncing balls. :-) We are now back in the step-down unit. I missed the Dr. today, but it looks as though we will be here at least a couple more days. I am hoping that when Dr. Jensen has better news for us than that when we see him tomorrow, but we'll just have to wait and see.

Jethro is feeling better, although today he is feeling a little bit punky again. However, he's been cooing and talking and engaging, which means he is feeling more himself.

The pacing went well yesterday, but totally wore him out, and so he spent pretty much all day sleeping, but happy and talkative when he was awake.

Please pray

2010-05-22T19:53:00.000-07:00

Dr. Anderson (one of the cardiologists) was in this morning, and Jethro is in sustained atrial flutter. So, they were going to give him a couple of extra doses of his rhythm med and see if it will correct itself. If, in the morning, he is still in AF, then they will sedate him and run a probe down through his nose and try to pace his heart out of the flutter.

There is a 75% chance that it will work. :-) Just what a Mama wants to hear. Shocking his heart would do it, but he still has that clot and he's on Coumadin, so that is just not a real option at this point. The risk of dislodging the clot is too great.

Our #1 prayer request would be that the meds would work and he wouldn't need to be paced.
#2 would be that if he does need to be paced, that it would work, and that he would be safe under sedation...it's always a little scary to turn your little over to a Dr to be sedated, and even more so when they have a heart condition.

Thank you.

Still in the Hospital...

2010-05-22T07:39:00.000-07:00

and you know you've been there too long when the cafeteria staff starts asking if you're an employee.

I talked with Dr. Jensen yesterday. He was very pleased with how Jethro has handled this surgery and the stress it entailed. We were going home today...unless I felt like we needed another day or so. Shortly after talking with Dr. Jensen, Jethro's heart went into some very funky rhythms and he kept setting off alarms. His heart rate spiked, and at times was well over 200. So, we are now in the PICU.

They are not doing "ICU things", but they can keep a closer eye on him in the PICU than on the intermediate floor, and our wonderful Dr.s are just careful with Jethro...which makes his Mama happy. :-) One of the other cardiologists is on call starting today, and his "specialty" if you will, is heart rhythms, so it will be interesting to get his perspective on what is going on. Dr. Jensen thought it still likely that we will get to go home tomorrow. Please pray toward that end.

Jethro had a good night, and was sleeping when I got to his room this morning, so I am in the cafeteria finishing up breakfast and updating you all here.

On another note, Levi made it to the State Track Meet in the 110 and 300m hurdles! Yesterday were the prelims and he took 4th in his heat of the 110, although that was not good enough to get him to the finals; and he took 4th in his heat of the 300 ~ which WAS good enough to get him to the finals! I believe that 1st and 2nd place automatically advance, and then they go by times. If you are reading this early enough in the day, and have high speed internet, you can go to idahosports.com and they are live-streaming the track meet. I am so thankful that even though Jethro and I are in Spokane, in the hospital, I am able to watch Levi compete and cheer him on...even though he can't hear me. :-) Technology can be such a wonderful blessing! The 300 hurdles will run about noonish Mountain time.

Post Op Report

2010-05-19T22:08:00.000-07:00

Jethro had surgery to place an open G-tube this morning. Dr. Chan said that it would take about an hour, but I think it was closer to 30 to 45 minutes. When we were taken back to recovery, he had already been extubated.

Dr. Jensen wanted him to go to PICU from recovery just because he is a fragile baby, and they wanted to watch what his heart and his O2 sats were going to do. We like Dr. J ~ he's got Jethro's six. :-) He did so well, that we were back in the intermediate unit by 2 this afternoon.

To just about everyone's surprise, they are already feeding him ~ although we're going slowly. He needs to be at about 31mL an hour before we can go home. And I need to be comfortable with wound care ~ which I will be, and his INR needs to be somewhat stable.

His nurse just came in and increased his feeds again. So, hopefully by the weekend we will be on our way home. Home Care Solutions is coming in the morning to instruct me on the wound care, then we just have to get his INR levels where they need to be!

We are so thankful for the wonderful Doctors we have been blessed with! Everyone here at the hospital is quick to tell me how great Jethro looks. While my preference would obviously be to not have to spend time in the hospital, I am thankful that it is a "home-ish" place to be. Everyone remembers you, and they all dote on the baby. God has blessed us all around ~ Jethro with life, excellent Dr.s and nurses, a wonderful hospital, and a super support network ~ both our family and friends who are close and involved in our daily lives, and the heart community that He has provided via the internet. We are truly thankful.

Surgery Next Week

2010-05-13T13:38:00.000-07:00

Yesterday, Jethro had an appointment with Dr. Jensen. They did a follow-up echo and things are looking pretty good. His body is slowly working on absorbing the clot in his heart, and the shunt is functioning as it should. Jethro is now 11 pounds (by my scale, their office scale doesn't have him at quite that much), but they would really like to see him gain weight better than he is.

So, it's time to "pull the trigger" as Dr. Jensen refers to it, and move ahead with a G-tube. So, instead of having a feeding tube running through his nose and into his stomach, there will be direct access to his stomach, through his tummy. We have heard good and bad stories about G-tubes, but more moms have told me what a blessing the g-tube was for their child. I am trusting that it will be for us as well. Dr. J also told me that it thought it would simply things following Jethro's next heart surgery, because we won't have to deal with feeding issues to be able to come home. He'll have his g-tube, I'll already be comfortable using it, so feeding will be a non-issue.

We'll go in on Monday afternoon. I think the cardiologists have some stuff they're going to do...tests and such, the feeding team with be working with us (we are NOT going to stop working towards oral feeds!), and then Wednesday morning he'll have surgery to place the G-tube. While not overly anxious, I am not looking forward to sending Jethro into another surgery. It's just not an easy thing for a Mama to do, even when you know that it will ultimately help them ~ or be their only chance...it's still difficult. But, I know that I can trust God to watch over him while I cannot, and I have no doubt that God will be right there in the OR, guiding the Dr.'s hands.

Please pray for:

wisdom for the feeding team. Jethro has a body-wide rash. The GP we see thought that it was just eczema, but it doesn't look like it to me. The speech therapist that we saw yesterday was concerned about it as well. We think it's likely an allergic rash. So, we need wisdom to figure out what exactly is going on.
guidance for the surgeon's hands. His name is Dr. Chan, and we would appreciate prayers for steady hands on Wednesday morning.
Mike and the other children. I'm not sure how things are going to work at home quite yet. Ezra is sticks pretty close to me ever since Jethro was discharged last month, so I expect this will be difficult for him.
for plans for the kids and where they will be/who will take care of them to come together.
that I would figure out the new feeding stuff quickly, and that Jethro will heal well and there would be no complications ~ so we can get home that much sooner.

Also, we have gotten a settlement from the insurance company! Thank you, Lord!! We are now beginning the process of figuring out what we want to do for a house ~ stick frame, post and beam, modular, etc., and looking at house plans. We would appreciate prayers for wisdom in this process.

I'm off to fry some chicken and boil potatoes for salad. We leave for Kamiah tomorrow. Levi and Garth are both competing at the regional track meet, so we will be going down to cheer them on.

Quick Update

2010-04-28T10:08:00.000-07:00

Just a quick update. We do have internet, but it's dial-up, so I am trying to not spend a great deal of time online, since it ties up the phone.

We are in the rental. It is a lovely older home, built in 1914 with craftsman styling. Lots of lovely woodwork in the living areas of the house. We are still without dressers and table and chairs and living room chairs, but we have a couple of couches, beds and a picnic table to eat at, so we are content.

Jethro is doing well. Other than his feeding tube, to look at him, you would never guess that he has a very serious heart condition. He is creeping ever closer to the 10 lb mark. It is so odd to have a baby that is two months old and not yet a pound over his birth weight ~ and to be happy with his weight gain! We had a quick trip to the hospital on Friday. Jethro's INR (the level of Coumadin in his blood) was 7.5 (they want it between 2.5 and 3.5). So, since we were heading into the weekend, the cardiologist wanted us at the hospital where they could keep a close eye on Jethro. Once we got there, they did another check of his INR, and it was 4.5 ~ still high, but not dangerously so. With it as high as it was in the morning, they were concerned about a brain bleed or other internal bleeding. So, we got to come home. Not necessarily how I want to spend my afternoons, but I would rather that they be overly cautious with Jethro than just assume things will be okay and then end up in a crisis situation. And, I must say that we are blessed with wonderful cardiologists who are really on top of things. I have learned that if they aren't concerned, then I probably don't need to be either ~ they are cautious yet practical, definitely a good combination in a Dr!

Josiah had a wagon accident the other night and got to make a trip to the ER. He cried until Garth told him he would likely end up with a sucker at the hospital. On the way in, Levi called his girlfriend and let Si talk to her, and then he texted me. It was all good. :-) Until they started giving him shots to numb things up and started stitching. I called while they were stitching and he was crying for me. :-( This is only the 2d ER trip I haven't made, and there's not much harder on a Mama's heart than not being able to be there when your youngin's are hurt and wanting you. Si ended up with 12 stitches, although it could have easily have been 24, the Dr. spaced them out quite a bit, and now he is quite swollen ~ his right eye is totally swollen shut this morning, causing a good deal of distress when he woke and couldn't see out of it.

So, that is the major points of update on the clan. :-) Thanks for all your prayers, please continue to pray for Jethro. Although they were okay with his weight gain, he does need to be gaining more weight. They would really like to see him gain 20 grams a day and he's not there yet. If he doesn't gain adequately, they will move ahead with putting in a g-tube, which we would really like to avoid ~ mostly because it would mean one more surgery for the little punkin.

A New Temporary Home

2010-04-13T21:59:00.000-07:00

Just a quick update.

We are out of the hospital. We were discharged last Wednesday. Jethro has been doing well since we've been "home". Tomorrow we meet our new primary care guy, a PA over in Tekoa. Thursday we have an appt with Dr. J., and it will be interesting to see how he thinks Jethro is doing. He has only gained a little bit of weight since we've been out of the hospital, but he has only thrown up once, and we've only had to put him on oxygen twice, and both times were when we were traveling.

We have a house to rent as of today. Yahoooo!!! I can't wait to get into our own home again. We still aren't totally sure what's happening with the house, but at least we have a place to call home. Jethro has so much "stuff" that it will be lovely to get settled in and not be in transition.

I don't know if we'll have internet, so if I don't post, it's probably because we don't. I will try to get some pictures and put up a post soon.

Please continue praying for Jethro. Even though we are no longer in the hospital, he is still a medically fragile baby. He needs to do well with his feeds and gain weight.

The benefit went well, and we were so blessed by everyone that turned out. Thanks to everyone for their prayers and support ~ we love you all.

Getting Closer...

2010-04-03T19:42:00.000-07:00

It looks like we will be heading home sometime this week! Dr. J has told the staff we're leaving on Tuesday, but that is partially to get them going on making sure we are ready to head home...we may not actually get discharged until Wednesday or Thursday. Today he got to have Mama milk! He did really well with it and I am very excited about how well he is doing with his oral feeds. We will still go home with a feeding tube, because he doesn't have the stamina yet to eat enough to fulfill his nutritive needs, but we are heading in the right direction!

Please pray that we can find a rental so that we have a home to take him to.

Music to My Ears

2010-03-29T10:23:00.000-07:00

What would be music to a heart Mama's ears???

How about, "This guy is getting boring." "He's not very 'intensive'". :-) :-) :-D

We like to hear things like that! UPDATE: Wow, I don't even have this posted yet, and one of the nurses just came in and told me that we will be moving to a new room, in the step-down unit. :-O **Thank you, Jesus!**

Jethro did not tolerate milk very well. :-( I told the Dr. it's because it had been frozen. Who wants frozen food, when you could have fresh!?!? ;-) His little gut just has not had to work and digest anything, so they switched him back to Pedialyte, and now he has progressed to 1/2 strength pre-digested (can you say, YUCK??) formula. They will slowly get him to full strength, and then hopefully his gut will be developed enough that we can move on to Mama milk. They are however, going to bring in the speech therapy folks and start working with him on eating. This is all so exciting!!

It all means that we are moving towards home!

Oh, and what else sounds like a sweet melody? Try, "The clot is getting smaller and is about 1/2 the size it was!" PRAISE GOD FROM WHOM ALL BLESSINGS FLOW!!

So, we have lots of praises today.

We also have a few prayer requests:

One of Will's closest friends was killed in a car wreck yesterday morning. Please pray for Alex's family as they grieve the loss of their son/brother. Pray also for Will and his other friends. This is a pretty close-knit group of young people and they are deeply feeling the loss.
Ezra was sick all last week, and now Kathleen is sick. Not realizing she was about to be ill, we brought her to town to spend the night with us. So, she was around Jethro, and me. Please pray for Kathleen to get better, but also that Jethro and I escape being ill ~ Jethro especially.
For Jethro to tolerate his feeds well.
That Jethro would be able to eat orally, and that he would pick up on it quickly.
For the clot to continue to dissolve and get smaller.
We are also on the hunt for a rental, and waiting to hear from the insurance what they think should happen with the house. Please pray for the provision of a temporary home, and direction in what to do building-wise for our permanent home.

1 Month Old!!

2010-03-26T14:03:00.000-07:00

Jethro chewing on his cannula

Today is a pretty exciting day. Jethro is one month old...not bad for a baby they didn't expect to live a week, and that had to be resusitated when he was born. This little guy definitely has some spunk! :-)

Progress is being made, slowly, but surely. Today he is off the antibiotics for the NEC, they are giving him more FFP (Frozen Fresh Plasma) to help with dissolving the blood clot (which is getting smaller), and they are talking about pulling the femoral line that they put in day before yesterday. Today or tomorrow ~ tomorrow I think, they will begin starting to feed him again. Please pray that feeding goes well, and that his tummy can tolerate it. If he doesn't do well eating ~ nursing or taking a bottle ~ they will put a g-tube in. This would not be the end of the world, but it is something we would like to avoid.

Still no real news on the house. We are still waiting on the insurance to decide if they think we should fix it or rebuild...they have a formula. :-) At this point we are looking for a rental, possibly or preferably between home and Spokane, so that we can be together, but I can easily/fairly quickly get into the hospital, and split my days between Jethro and the rest of the family.

Ezra has spent the week sick. Will took him to the dr. this morning, and they believe that he has a bacterial infection and his lungs are congested. They did test him for RSV, although they didn't think that was what he has. He is one sick little boy though, not being able to keep anything down. :-( Please pray for his health, and that of the rest of the clan...including Grammie and Pak. Grammie is a treasure, watching after all the kids and being up with Ezra during the night.

God is doing amazing things for our family and providing so abundantly ~ in everything from the small day-to-day needs to big ticket items for Jethro's benefit auction. We are so thankful to Him and to all of you who are truly being the hands of God to our family right now. Thank you!

Trial by Fire

2010-03-18T21:25:00.000-07:00

As many of you will already know, our house burnt yesterday. This was a shocker, and pretty devastating when we got the news. I just thought, "Lord, what are You doing? I can't take much more!" By afternoon and after a lot of tears, I was beginning to think, "Lord, what are You up to?" (In a much more expectant and hopeful way) Perhaps because we are dealing with life and death issues with Jethro, perhaps because none of the children were in danger, perhaps because there may be some salvageable things from the house, perhaps because of all those things, I am on a pretty even keel as far as the loss of the house goes. Don't misunderstand me, I am grieving the loss of our home...and the precious things within it ~ things that have been handed down through the family, things that cannot be replaced, but in the grand scheme of things, they are just that, things. I am confident that God will provide for us. I do not know how exactly, but I know He will.

The folks in our community are already showing us an outpouring of love and care, and we are so deeply grateful ~ we just don't know how we need help at the moment. Having never gone through anything like this, we are still trying to get our bearings and figure out what the next step is.

The kids are doing okay. Kathleen was heart-broken over the loss of her birds, but I just let her cry until she was done. It's hard when you're nine, and your pets die in a fire. Thankfully, the little boys are too little to really comprehend what's going on.

Jethro is doing well for the most part. They did MRI's yesterday and today and basically took pictures of his entire body, looking for clots or evidence of strokes. The only clot they found was the one they knew he had in his heart. They did however, find a bleed on his brain. This could complicate how they are going to deal with the clot. They will do another CT scan tomorrow to see if the bleed has grown. If it has, they will have to stop giving him blood thinners (which they have been using to try to reduce the clot), and he will likely have to have another open heart surgery to remove the clot.

Our prayer requests would be:

That the bleed has not grown and the clot has reduced in size. Negating the need for another surgery so soon after the first.
There are some things possibly happening as far as the house is concerned. Pray that God would make the way clear before us. We do not want to push or make assumptions, we just want to stay out of the way and let God do what He will do.
Please pray for the other kids. Losing your home is a pretty devastating thing ~ especially when you've been looking forward to the day everyone will be home together. Now, by the time we have a home again, both Levi and Will will be out of it and gone. My Mama's heart might need some prayer in that area as well.

We praise God for:

His provision and protection over our family. It is very sobering to think that that might have happened when there were children at home. I am sooo thankful that I didn't have to worry about the safety of any of them, while wondering if the house was burning to the ground.
Jethro doing as well as he is. Even with the setbacks, in the grand scheme of things, Jethro is recovering quite well. Not bad for a baby who wasn't supposed to make it very long!
3 precious, beautiful weeks with Jethro. I can't believe he's 3 weeks old already, and everyday with him is truly a miracle.
precious items that weren't lost in the fire. God protected Tucker's baby book, and most of the other photo albums. Some of the heirloom rings I have and my wedding set were spared even though they were in the heat of the fire.

Once again, thank you for all your prayers...they are what keep us going!

Please Pray

2010-03-16T19:26:00.000-07:00

Jethro had a long weekend. Friday they stopped the morphine and pulled his vent tube. Yay!! However, over the weekend it became apparent that Jethro was going through withdrawals. :-( He was awake, almost the entire weekend...including at night, and he looked uncomfortable almost continually. The only time he slept was when I was holding him.

Yesterday, he had some rhythm problems with his heart. His heart rate was over 200, his blood pressure was rising, and his oxygen sats were dropping. This is not totally unexpected. They not only cut into his heart, but took some of the tissue out, so the electrical system of the heart has been disrupted. Additionally, one of the symptoms of Ebstein's is also arrhythmia problems, because the right atrium is adversely affected and it is that part of your heart that regulates your heart rhythm. So, they ended up putting him on a medication to regulate his heart rhythm. They also decided to put him on methadone, to help him with the withdrawal symptoms.

He has also been periodically spitting up some greenish stuff. The nutritionist thought it was likely bile, because the feeding tube goes directly into his small intestine, so there is nothing in his stomach to throw up. But, this morning the cardiologist didn't think he was hearing much if any gut sounds...although there was evidence that his gut was working. However, the Dr. felt that it would be a good idea to have an x-ray and ultrasound of Jethro's gut. This evening, the peds intensivist told us that they saw air on Jethro's liver. This is not normal, and has them concerned that he is developing Necrotizing Enterocolitis or NEC. For a real explanation, click on the name of the disease. They will stop feeding him Mama's milk and start him on triple antibiotics and they will keep a close eye on his gut with x-rays.

So, our prayer requests are:

That it is NOT NEC.
If it is NEC, that it would respond well and quickly to the antibiotics.
For Jethro to get through his withdrawals well. It is difficult to watch a baby go through this. :-(
For his heart rhythm problems to settle down. The meds they have him on are not a long-term solution. They have side effects that make them undesirable for long term use.
For God's healing touch on Jethro.
We are likely looking at 2-3 weeks before we can go home. Our other children ~ especially the younger set ~ are missing and needing us as well. My Mama's heart is heavy with this separation, but driving back and forth is just not an option right now. Please pray that God would bring things together so that we can be together as a family again soon.

Heaven on Earth

2010-03-13T10:20:00.000-08:00

Last night, on his 2 week birthday, I finally got to hold my sweet baby boy. I don't know a lot about Heaven, but I know it will be glorious, and that was how last night felt. Glorious. 2 sweet, blissful hours of holding my son, singing to him, thanking Jesus that He had preserved this small child and sustained him through so much.

The David Crowder band has a song, "Glorious". Some of the words are:
"You make everything glorious, You make everything glorious, You make everything glorious, and I am Your's, what does that make me?"

My little boy is truly glorious ~ a miracle and my hero. I praise God for each day He has blessed us with this special little blessing, and the wonderful people He has brought into our lives because of Jethro's heart. We have seen His care and provision in mighty ways this last 2 weeks, and we lift our hands to Him and say, "You are glorious!"

I added a prayer request in the afternoon, to yesterday's post, but I will repeat it here.
**Jethro has developed a clot above the Tricuspid patch. They placed him on blood thinner to try and encourage his body to absorb the clot. He's too little for "clot buster" meds. This morning, the Dr told us that Jethro appears to be at least somewhat resistant to the blood thinner. They don't know why. So, please continue praying that the blood thinner will work, and that his body will just absorb this clot. If it comes loose, it would go to his brain, which would be a very bad thing.

Thanks so much. You are all dear to my heart.

Two Weeks Today

2010-03-12T10:06:00.000-08:00

**Edited Friday afternoon to add a prayer request.**

Jethro is 2 weeks old today, and he is doing well! Yesterday, he was doing good enough that we went home for the day and spent it with the other children. What a wonderful time of hugs and kisses and reading stories, and just being together. I miss them terribly.

Yesterday morning, they had taken him off the paralytic drug, and also lightened his sedation level. While we were gone, they pulled the dialysis catheter! This was placed so they could pull excess fluid off his belly post-op, and in case he would need dialysis. They also began a slow feed of Mama's milk!

This morning, Dr. Jensen (cardiologist), told Jethro he was going to have to work today. They are going to continue weaning off the vent (and if all goes well, he might possibly be off it today!), increase his feeding, and pull his pacer wires. My baby is going to look more like a baby, and a little less like a science experiment! His night nurse had also told me that even if the vent is still in, if some of his other paraphenalia is gone, I might be able to hold him tonight! What a lovely 2 week birthday gift that would be!

Jethro was also moving around a little this morning and while Dr. Jensen and I were talking, he opened his eyes! Haven't see those babies since Saturday...what a sight for this tired Mama!

Just about this time 2 weeks ago, we were finding out that Jethro was in trouble and we were going to have to induce and get him here...things were scary and uncertain. Today, things are still uncertain, but there is hope and joy that out-weigh the uncertainty.

Prayer requests:

For Jethro's lungs to do their thing, so he can get off the vent.
Babies who have been vented often have an aversion to anything in their mouth, making feeding by breast or bottle almost, if not completely impossible. Please pray that Jethro will take to nursing just like his big brothers did!
We are starting to have problems with IV lines. Jethro has some burns on one arm caused by the IV, and they had to pull a "new" line last night because of severe bruising ~ and wanting to avoid more burns. He's not done needing IV meds, so we need to have some access. He does still have his central line, but that was placed a week ago, so I don't know how much longer it will last. Please pray that we have some good IV access for as long as it's needed.
Finances are more than tight, so prayers for God's provision would be greatly appreciated as well. Those of you who have had extended stays in the hospital know what an extra strain that can put on things.
They did an echo on Jethro's heart today. He has a clot forming above the Tricuspid patch. It's not anything that is alarming to the drs, but they are concerned. Jethro is too little for a "clot buster" med, so they are going to give him a blood thinner to try and encourage his body to absorb the clot. If the clot gets loose, it would likely go to his brain, which would not be good. Please pray that it would be absorbed and not cause any problems.

Once again, your prayers mean so much. I know that is why Jethro is doing/has done as well as he is. God is answering your prayers in the affirmative, and I am so thankful, to Him and to you!

Holding His Own

2010-03-09T09:48:00.000-08:00

WARNING: There is a post-op picture of Jethro ~ I debated about putting it up, but decided at some point it may be of help to another family facing their first open heart surgery. I was able to look at pictures of another baby yesterday, and it just helped to prepare me a bit for what we were going to see.
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We were so excited yesterday. Surgery went well, and they were able to close his chest! We didn't think that that was going to happen right away. They prepared us for the chest being left open for 3-7 depending on swelling, etc. But, after taking some of the atrial material out and getting things working again, there was plenty of room for them to go ahead and close! What an encouragement that was.

When we got up to PICU, his oxygen sats were good, and so was his color. He is heavily sedated right now, still intubated, and lots of tubes and wires right now, which is hard to see, but knowing that it's all necessary makes it a little easier.

They showed us a chest x-ray they took shortly after he was born. His heart took up his entire chest cavity. There was NO ROOM for anything else in his chest. Then they showed us a post surgery x-ray, and there were lungs there! It was so exciting to see!

Jethro had a good night, with some fluctuations in his blood pressure, but it responded well to a change in medication. We talked with the peds intensivist this morning and she was very happy with how well he is doing. It'll be good to talk with the cardiologist and see how she thinks he's doing.

We are still in the critical time period, post-op, so please, please keep praying!

Surgery Monday

2010-03-08T07:49:00.000-08:00

3:45 pm ~ Praise the Lord! Jethro is out of surgery, and in the PICU. We're just waiting now for them to get him settled in so that we can go see him. Dr. Worrall said that all went well. The Tricuspid Valve was so badly mal-formed that there was no way to repair it, which was what they believed to be the case from the echos. So they did the first surgery in a 3 surgery "series" to make his heart into a single ventricle heart. I am so thankful that the surgery is over, but the next 24 hours will be critical. I know the reason it all went so well is the number of prayers that have been said on Jethro's behalf. THANK YOU!! Praise God from Whom ALL Blessings Flow!!!

12:35 pm ~ Just got another update: Jethro is off the bypass, they are doing final clean-up and will watch him for another hour or so before surgery is "over".

11:45 am ~ They started to take Jethro off the bypass, but saw some bleeders, so they put him back on so that they can fix those. However, while they were taking him off, his heart was beating good!

10:50 am ~ Dr. Burg, our cardiologist, came in and talked with us. The surgery is about 1/2 way done. They have the shunt placed, and the valves closed off, the atrial material removed. Now they will be finishing off those things, and begin to take him off the bypass, which can be tricky. Please keep up the prayers!

9:43 am ~ One hour down. Jethro is now on bypass and surgery is going well.

8:23 am ~ The call just came...surgery has begun.

Today's the big day. It's 7:50, and we took him and left him in the OR about 45 minutes ago. Talk about hard. It's hard to process. He looks so healthy, and yet his heart is bad. After surgery he will look terrible, but his heart will be better. We took pictures ~ I'll try and get some posted in a bit. I wanted to get some last pictures of him without any scars. We probably have another 1/2 hour or 45 minutes before surgery actually begins. They told us it would take and hour and a half or a little longer to get him prepped for surgery.

This morning, all his numbers looked great, and he had a good night. He had already had some morphine by the time we got to the NICU, so he didn't wake up for us, but it was still wonderful to hold his hand and kiss him.

We just finished breakfast, so while I'm doing this, Mike and his brother were going to go clear our stuff out of the Ronald McDonald room upstairs, and then we'll go to the NICU and pick up Jethro's things, then to the waiting room...to wait.

Thank you so much for your prayers.

Dedication

2010-03-06T14:40:00.000-08:00

"For this child I prayed, and the Lord has granted me my petition that I made to him. Therefore I have lent him to the Lord. As long as he lives, he is lent to the Lord."
1 Sam. 1:27-28

Wednesday was Levi's 18th birthday. I can't believe he's 18!! So, we decided that we would have everyone come up to the hospital and have a birthday party in the family waiting room outside the NICU and to have Jethro dedicated as well. It is important to us that however long the Lord has granted Jethro to live, that his life glorify the Lord, and so the reason to dedicate this dear child.

Our dear friends, Brian, Julianne, and John Primer came up (it was Julianne's birthday as well), and our pastor and his wife, Dave and Debby. Before we got around to going in to dedicate Jethro, another pastor friend and his wife showed up to visit, Randy and Marie. So, when we went in, we had about 20 people ~ including Grammie and Levi's boss, Jerry (who also happens to be a good family friend).

What a precious time we had, 3 pastors praying over our precious, fragile son...that we would have the opportunity to raise him up in the fear and admonition of the Lord, that the Lord would reach down and touch his body and heal him, that we would walk through His will in a way that glorifies Him. They anointed him with oil, and then Mike and Will also prayed. It was definitely a "holy goosebump" time together.

And then there was the paparazzi. Somebody, who will remain nameless (Daddy!), gave Josiah the camera. So, while the men are praying, and the children are crying, Josiah (almost 4) is busy clicking away (click/flash, click/flash, click/flash, click/flash), taking pictures...mostly of everyone's feet. However, like any good paparazzi that goes out and wastes rolls of film, he did get some clear, usable pictures. And provided some levity to the day.

Earlier in the day, my dear friends, Tiff and Dae, had showed up with tea ~ complete with china and a table cloth. Dan and Jan had stopped by to visit as well, so Jan, Tiff, Dae, and I had all sat down and had tea and visited. What a lovely bunch of women that God has surrounded me with! They know what TLC is all about!

Surgery Monday

2010-03-05T19:11:00.000-08:00

So sorry I haven't been able to update sooner! But, I now have my laptop back, and hopefully, it's fixed and will behave itself. :-)

We met with the cardiac surgeon yesterday. We really liked him, he was very straight-forward, yet compassionate. He talked to us about 2 different surgical options. One is a Tricuspid Valve fix, which Jethro really isn't a candidate for, because of the severity of his defect. Just to give you an idea of how rare Ebstein's is, the "big" studies on it involved 20 patients over 20 years. :-/ Doesn't really make for lots of information. And within that rarity, Jethro is almost in a class by himself because of the severity of his defect. His defect is so severe, it really is incompatible with life. However, surgery will give him a chance.

We told the surgeon that we don't expect him to perform a miracle, nor do we expect that Jethro's heart will be perfect ~ who of us has a perfectly functioning body??? Anyone? Well...Levi says he has a perfectly functioning body, but most of us...not so much! :-D We just want Jethro to have a shot at life, and to be able to have him as a part of our family to love.

So, what it looks like is going to happen is that we are heading toward a single ventricle "solution". What this means, basically, is that they will block off the right side of the heart and ignore it. This will take 3 open heart surgeries to complete. The first one, Lord willing, will take place on Monday, the second would happen between 4 and 6 months of age and the final one would take place at 3 years of age. It probably would not be his "final" surgery, but the one that would complete this particular procedure.

Some of you have asked or suggested about the possibility of a transplant. That just really is not an option for us. For one thing, the financial aspect of it is so overwhelming, I can't hardly even contemplate it. The other is the pandora's box of emotions, etc. that it opens up. I just don't think I could go down that road right now. We are confident in the decision that was made yesterday, although we know that we still have an uncertain, difficult road ahead of us.

Praises are:

This baby is already a miracle. He was delivered dead, and they were able to resusitate (sp) him. Every day with this child is a blessing, and we want to acknowledge that.
Jethro is doing good right now. He is off the paraletic drug, he is moving and responding to touch, and he is working on opening his eyes! He just barely opens them, but there's some eyeballs in there! :-)
My milk supply is great. Right now he's not getting any milk, but when he's ready, we've got plenty!!
We were able to dedicate Jethro on Wednesday. 20 people in a little NICU room, all praying for healing for this sweet baby and that his life would glorify God. We had 3 pastors present...how many babies are so blessed?

Prayer requests would be:

That Jethro would remain stable or continue to improve over the weekend. This is so important if we are going to be able to move forward with surgery on Monday. I know it's only the weekend away, but in Jethro's condition, each day is a lifetime.
For Mike and I to remain steady in our faith. Tuesday really knocked me for a loop. God is faithful and true, and I want to be that to Him as well.
Continuing wisdom and compassion for the drs and nurses. So far, we have had great nurses and our drs are outstanding. They really are a great bunch of folks.
And please pray for the surgery on Monday. That it would go smoothly, that the drs hands would be steady, that God would make the way clear before them.

We also have a great bunch of folks at home who are working hard to put a benefit dinner together. I want to extend my thanks to Cheri Thaut, our postmistress and my oldest boy's boss, for all her hard work and love and thoughtfulness for our family. You are the best, Cheri!

Also, if you are on Facebook, they have set up a group for Jethro. Search under Jethro Storms Dole, and you can find him. There will be updates there...possibly more often than here, and pictures as well.

Oh! Monday...if all goes as planned, I will create one "surgery" post, and just edit and add to it with updates, instead of creating mulitple posts on Monday. I will try and post an update each time we get one, but I may not get it done that often, however, I will update here.