HOPE

"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



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

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

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...

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:

1. A young friend with cancer was able to come home over the weekend!
2. I had a quiet day at home yesterday (Sunday's are usually busy, busy!).
3. Snow is falling.
4. My house is closed in! So thankful we don't have open walls or windows to let the snow in while folks are working.
5. Plentiful magazines for inspiration as we decide on interior details for our home.
6. That we live where there is plentiful natural materials to incorporate into our home.
7. Snow days! Even homeschoolers get those. ;-)
8. A fussy baby...okay, I'm not thankful he's fussy, but I am thankful that he's here to fuss!
9. Older children that are helpful.
10. The love the older children have for Jethro.
11. 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.
12. 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.
13. 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.
14. 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.
15. 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.
16. Dr. Worrall. This is the skilled surgeon that has been used of God to save Jethro's life as well.
17. 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.
18. 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.
19. Flannel nightgowns ~ is there anything better to settle into a long winter's sleep in?
20. 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!
21. Jethro has outgrown the need for his sleeping wedge!
22. Joy in every circumstance.

Quote for the Day

"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



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...

Today I am thankful for:

1. Army guys all over my floor, for that means there are little boys in my home.
2. Baby snuggles.
3. Meat in the freezer.
4. Stairs in my house.
5. The furnace guy is done.
6. Insulation is going in.
7. That God has blessed me with 9 amazing children.
8. He (God) never gives up on me.
9. My brother, Clint. Thinking of him tonight and praying for his safety.
10. That Bob loves to mess around in the kitchen ~ mess being the key word. :-)
11. Jethro's home medical co. What a blessing to have needed supplies delivered to our doorstep.
12. 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.
13. Possibilities
14. Hope
15. No colds so far!
16. 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.
17. Warm slippers.
18. God's provision of snow clothes for the children.
19. A son willing to drive to Spokane to rescue his Mama. :-)

18 Things

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

1. Numbered bullet lists, so I don't have to keep track. :-)
2. 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.
3. Instant messaging. What a great way to keep in touch with friends.
4. 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.
5. The ability to sew.
6. 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.
7. Grocery stores and the abundance of food within them.
8. 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.
9. The look in Jethro's eyes when he spots me. :-)
10. Cell phones.
11. That Garth didn't do more damage when he slammed his finger in the door this morning.
12. For each breath I take.
13. Ezra and how much he loves his baby brother.
14. My Grandma and the godly influence she was in my life.
15. The smell of pipe tobacco. It always brings to mind my dear, wonderful Grandpa.
16. Clear roads on a snowy day.
17. Christmas movies.
18. A baby without oral aversions!

A true Dole...double fisting it!



17 Things to Be Thankful For

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

Today I am thankful for:

1. 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.
2. 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.
3. The precious babe my dear friend is getting close to delivering.
4. French doors put in at my house!
5.  A lovely vanity with matching mirror for our master bath and 3 stained glass lights.
6. My mom. She has always been an excellent example to me, and a wonderful prayer warrior.
7. A hard working husband.
8. Grown and almost grown boys who are upstanding young men, that I really enjoy spending time with.
9. That God has blessed me with a sense of modesty ~ if you've been shopping lately, I'm sure you can relate!
10. Chubby armed hugs and sticky kisses.
11. Getting to live in a house I've wanted to live in since I was a little girl.
12. Wildlife ~ how wonderful of our Heavenly Father to bless us with beautiful critters that are good to eat!
13. Music.
14. Changing seasons.
15. Kittens.
16. My girls, who are learning to be more and more helpful.
17. Electricity.

12 Things

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

Today my thankfulness list includes ~

1. I was able to switch out Jethro's G-tube button with no problems.
2. A great staff at NWCCHD. :-)
3. Will and his willingness to help us get the house built.
4. Andie and the blessing she has been to our family.
5. 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.
6. The extended family God has blessed me with.
7. 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.
8. The Food Network. We love the inspiration it provides for our kitchen!
9. My brother, Clint. Currently serving his country, away from his wife and children, ready to deploy.
10. Our vetrans. They sacrifice much, sometimes all, and I deeply appreciate it.
11. My fellow moderator's. What a wonderful group of women!

Thankfulness

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.

1. 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. 
2. The strengthening bonds between my children because of Jethro and his heart.
3. A thankful heart.
4. A beautiful new front door for our home.
5. 2 'new to us' beautiful dresses for the girls.
6. A godly mom.
7. A dad who is knowledgeable in so many areas and his willingness to take his grandsons alongside and teach them.
8. A crisp clear fall day.
9. A job for my Beloved that allows him plenty of time for building our house.
10. 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...

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...

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

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

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

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

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

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?

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...

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

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!

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

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)

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.
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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

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

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

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

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.