Monday, August 31, 2009

He Listens

After a morning that seemed like an eternity, it finally came time to find out our son's fate. I was on the verge of being sick all morning. The stress and fear was overwhelming. However, the moment our nurse took us back to do the scanning all over again, she told me to leave it at all at the door, she said we were in the right place and that there was so much that can be done for heart babies and it was time to relax now. After about 15 minutes of scanning, I literally almost fell asleep. The lack of sleep, the adrenaline, the nausea left my body as I laid and let them do what they needed to do. I knew I was where I needed to be and as I crashed from 4 days of paralyzing fear, a calm came over me and I felt that we might make it through this.
So, here's what we know:

Paxton has been diagnosed hypoplastic left heart syndrome.

Hypoplastic left heart is a rare type of congenital heart disease. It is more common in males than in females.
The problem develops before birth when there is not enough growth of the left ventricle and other structures (aortic and mitral valves that guard the exit and entrance of the ventricle and the aorta, the blood vessel that carries oxygenated blood from the left ventricle to the entire body).
In patients with this condition, the left side of the heart is unable to send enough blood to the body. As a result, the right side of the heart must maintain the circulation for both the lungs and the body. This extra workload eventually causes the heart to fail.
The only possibility of survival is a connection between the right and the left side of the heart its blood vessels, through which blood may pass. This is called a shunt. Babies are normally born with two of these connections (the foramen ovale and the ductus arteriosus), which normally close on their own a few days after birth.
If ductus arteriosus is allowed to close in a baby with hypoplastic left heart syndrome, however, the patient will quickly die because no blood will be pumped to the body.

Just after birth the doctors will administer medications to keep the ductus open and allow us some time before Paxton will receive his first surgery at 1 week old.

I will induced in St. Pete at around 38 weeks, they want him nice and plump for surgery. I am not required to have a c-section, can nurse him and hold him for a short time before he is transferred to the cardiac intensive care unit at All Children's Hospital. During that first week before surgery I will be visiting him constantly to get him in the routine of nursing in the hopes that after surgery he will remember and continue to eat. Some heart babies have trouble eating after surgery so this time will allow us to teach him as well as allow us to bond.
Then post-op, if all goes well, Paxton will be in the cardiac intensive care unit for 3 weeks give or take. After that, he can come home. This will require me to be in St. Pete with my boy for at least a month. I am so sad that I won't be home with my other two boys, but the baby will need me and I have to remind myself that they won't remember this time while I am away. I will see them on the weekends and while it will be hard, I must be there for Paxton during such a crucial time.

At six months, he will have to endure another surgery and again at 2 years! It takes 3 surgeries to complete the "rearranging" of his heart. There will be shunts placed and taken out. Valves reshaped, veins and vessels reconnected. The only other option per our fetal cardiac surgeon is a total heart transplant and he does not recommend that route.

It's a lot to take in. It's hard to imagine our baby going through so much in such a short time, but the alternative is unthinkable. Options, a plan of action and hope were laid on the table for our boy today. My husband and I feel like a weight has been lifted. I feel like I can breathe for the first time in 4 days. My stomach no longer has the knots in it that barely allowed me to eat and I just might sleep a good sleep. We had dinner together tonight on the way home and found it very weird that we were relieved that our baby was having 3 surgeries, but when you are given the worst case scenario as all to go on for 4 days, you suddenly realize you will do whatever you have to do for your child, even surgery, three of them... It's a whirlwind, a blur, I feel like I am in a movie.
This is not what we planned and I am insanely sad about it, but as Dave told me, it's a test and together we will make it through this.
Paxton is a fighter! We can see this already and I hope that he continues to fight in the days and months ahead. We have roughly 5 weeks to allow him to grow as big as he can get. I have 5 weeks to spend with my Austin and Mason and soak up all the love that I can. I have 5 weeks before I am tested yet again as I hand over my baby into the hands of people I don't even know in the hopes that they will save his life. It's overwhelming and scary. I am scared of so many things right now, but the baby that is kicking me as I write this has a chance of making it home to his brothers and for that chance, I am forever grateful.
It's going to be a long road for all of us, especially our little man, so we ask that you please, please keep praying for him, because God does listen.

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Hilary said...

Oh Jennie, I am glad you got firm answers, a plan and most of all hope! In the Lord there is ALWAYS hope.
I know you must be going through a whirlwind of emotions, but I'm thankful for the peace, hope and thankfulness that is coming over you and your husband.
Paxton will make it through the 3 surgeries like a champ. It's just soo amazing what can be done medically nowadays! What a blessing from God.
I will continue to pray for you, Paxton, your hubby and boys, the doctors and all who come to help/take care of you. I so wish I were closer so I could help out. But please know, you are never far from my thoughts and prayers.
I can't wait to see little Paxton!!

~ Becky said...

I found your blog through a button on someone else's blog. I just wanted to let you know that I'm praying for your family and the medical team that is and will be caring for your little Paxton.

Henry the Blog said...

Jennie --

I have a hypoplastic 7 yr.old, Henry. 15 mos post-transplant after having undergone all of the surgeries your family is facing. He is doing great. And now I am also sharing on a blog all that we went through.

I am keeping Paxton and his gracious family in my prayers -- that is what, ultimately, saved my boy's life.

Please stay in touch

Erin @

Anonymous said...

Jennie - You don't know me. My name is Kristen and my parents live in Naples. I found your blog through Terrilyn's website - she's taken pictures of my family too. You and Paxton (and your entire family) are in my thoughts and prayers this week - good luck from NY.

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