Jethro's Story

There's a problem with his heart

He may not survive 'til birth

The heart is enlarging

There's no room for his lungs

The defect is severe

Frightened, alone, terrified of loss

Driven to my knees

Pray and pray

His story is his own

Finally, peace

Birth, sedation, intubation

Decisions, turmoil

Counsel, hope, the return of peace

Surgery, prayers

Nurses, doctors, excellent care

Recovery, therapy, growth

Doctor's visits, feeding tubes

Long hard days

Triumph at last

Joyful life

Jethro is 2!

We once again have a two year old in the house.

Sunday was Jethro's birthday.

This year was low-key. No large celebrations.

But, all the kids were here, plus a couple extra (girlfriends),

and we had a good afternoon of eating and visiting 

and cake and presents.

Although Jethro was not that interested in opening presents.

He was happy to play with his toy after it was open,

but if it hadn't been for helpful siblings, his presents would

still be wrapped.

He loves Lightning McQueen, so of course he had to have a cars cake.

Here's the birthday boy, rockin' his new Under Armour shirt.

Happy birthday to you, happy birthday to you!

He didn't get the whole, blowing out the candles idea. He just wanted to grab them. Daddy blew them out for him. =)

Playing with his new wheelies construction ramp...I think all the littles loved it.

Birthday parties are EXHAUSTING! =)

We are so thankful for 2 years with Jethro!

God has sustained him and caused him to flourish. 

He is doing so well right now, and if it weren't for his

scars, and the amount of sleep he needs, 

you wouldn't know that this baby was

DOA. 

CHD Awareness...A Double Portion

And the Lord restored the fortunes of Job, when he had prayed for his friends. And the Lord gave Job twice as much as he had before...And the Lord blessed the latter days of Job more than his beginning.

Job 42:10, 12a

As the Bible relates Job's story, we learn that everything is stripped from Job. His children die, he loses his belongings, he didn't have the support of his friends. Even his wife encouraged him to curse God and die. Yet though he does not understand, and even questions God, Job does remain faithful and teachable. When all is said and done, God blesses Job with a double portion of what he lost.

You may wonder why today I am sharing this. What could Job have to do with CHDs? Well...he's just kind of a backdrop for what I want to share. Seven and a half years ago, we lost a son at birth.  It was sudden and unexpected. I pleaded desperately with God to allow me to keep and raise my son. I was not strong enough to walk the path of a grieving parent. But, God said, "No." Tucker would not be restored to us. We would commit his spirit to the Lord and his body to the ground; and Mike and I would learn to walk in faithful trust even when we could not understand.

Fast forward five years and we learned that the baby I was carrying had a severe heart defect. We were told he likely would not live. And emotionally, I was thrown back to the morning that Tucker was born. I was terrified to walk through that kind of grief again. I knew that God would carry me if that was His will for us, but I just did not want to go there. As I prayed, God blessed me with such peace. Everything would be okay. I don't mean to say that I had a sense that Jethro would live, necessarily, but just that whatever was ahead of us, we *would* be okay.

I have told Jethro's birth story here more than once, so I won't repeat it now, but know that he had a very rough time of it in the beginning. He was pretty far behind developmentally because of his initial setbacks and subsequent hospitalizations. At 6 months, he could not even hold his head up. He was probably around 8 or 9 months before he rolled over, 10 months before he could sit without support, past his first birthday before he crawled and 19 months when he walked.

As we have watched Jethro grow and develop, especially over this last year, we have taken such joy in every accomplishment, whether it's moving up to an 8oz bottle from 4oz, crawling, teasing play, or running and keeping up with the other little boys. We always find joy in the milestones our children reach. Each one for each child is special. However for Jethro, each skill is a hard won victory. Nothing has come easily for this sweet boy. And yet even as little as he is, he gives it his all. He doesn't do anything in half-measures. Once he decides he's going to do something ~ watch out! Because he's going to do it fully. The day he decided he was going to try the stairs, he didn't go up just one or two ~ he went up 2 flights of stairs!

As we were marveling at some common thing he was doing one afternoon, and cheering him on, I looked over at Daddy and said, "I wonder if we had been allowed to raise Tucker if we would have been blessed with Jethro. He's just a double portion."

I don't know how to adequately describe what it is like to watch him do such ordinary toddler things and to see them as extraordinary and even miraculous. With each milestone to be reminded that it almost wasn't. Each day with Jethro brings such unspeakable joy, I feel like my heart could burst from it. What a contrast to the shattering grief it endured when Tucker died.

There is just something special about Jethro. I believe that all of our children have a special bond with him, and even strangers, who know nothing of him or what he has been through are drawn to him.

I would never have asked to be a heart mom. It is certainly a difficult path to walk, so much to learn, separation from family, watching your child suffer and have to endure painful treatment so that they can live ~ and not being able to 'fix' it. Entering into a new world of hurt and grief. And yet, I am so very thankful for the blessing of being Jethro's Mama. I am humbled that God chose Mike and I to love and cherish and raise this remarkable little boy. I am so very thankful for this double portion.

***This year, in my awareness posts, I hope that I have helped to not only raise your awareness of Congenital Heart Defects, but also to know that while we walk an uncertain road with our heart warriors, there is normalcy, although it looks different than it did before. I want to encourage you that there is hope, there is joy...even with, or maybe even because of a broken heart.***

What Congenital Heart Defects Have Meant to Our Family

What has CHD meant to our family?

It's meant a heart broken ~ beyond comprehension. Who could understand a heart so defective that it can't support life?

It's meant innumerable hours at the computer, researching, learning, writing down questions for the cardiologists.

It's meant a steep learning curve. Medical terminology, equipment, and skills I never dreamed I'd need to know.

It's meant more time than can be measured spent in prayer. Asking for healing, for wisdom for the doctors, for clarity in decision making, for peace, for comfort, for joy in the journey.

It's meant more Dr.s visits than I can count. 3 different doctors before he was born, and close monitoring by the cardiologists after.

It's meant hospital stays.  Some long, some short. Each one bringing separation from the other children, and filled with uncertainties, setbacks, complications, and finally...improvement.

It's meant lots of new folks in our lives. Doctors, surgeons, nurses, ultrasound and echo techs, therapists, and nutritionists. All coming together for the good of our son.

It's meant struggles. Watching our son, machines breathing for him. Wires and tubes, needles and probes. Not being able to hold and comfort him. Feeding difficulties and developmental delays.

But most importantly ~
It has meant our faith has grown. As we have watched God answer prayer after prayer. As we have watched a precious, fragile little boy strengthen and grow.

It has meant we have a new-found appreciation for the little things, the things we often take for granted. Things like holding a baby and rocking them. Things like rolling over, sitting up, crawling, and walking.

It has meant joy. Every step of the way God has been by our side ~ often He has carried us. No matter what we have faced with Jethro, we have been thankful and there has been joy.

It has meant daily experiencing the grace and faithfulness of God. Seeing our older children step up to the plate and care for their younger siblings...to love them and hold things together when it's all falling apart. To watch Jethro make each milestone...each victory hard won. To see him happy and 'normal'.

I wouldn't have missed it for the world.

CHD Awareness Post #2

I had planned to post a bit more during CHD Awareness week, but our internet has been iffy, so posting hasn't been possible. :-P Today I'm going to repost something I wrote when Jethro was just months old.

The thing about heart defects is they change everything. Everything that as parents we take for granted and don't really think much about...now you think about them...you wonder if they will be. When you have a child with a heart defect, it turns your world upside down...and it takes a while to get your bearings back and feel like you are on an even keel once again. Here are some thoughts I had as I was beginning this journey with Jethro.

Confessions of a Heart Mom

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

Jethro's 1st Birthday!

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!

CHD Awareness Day 10

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

"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

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.

More to deal with

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!

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.

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.



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 :-)



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. :-)