TBT- 'CHOP update- November 22, 2011'

12 December 2013

I notice on facebook people post 'TBT' (throw back Thursday) photos of obviously themselves or someone else from the past. I am going to steal the idea and repost old blogs that did not carry over from when we switched blog sources. I will label each post 'TBT' and then the name and date of the blog I am reposting. This way, all of Hayden's blogs can be in one place again! Hope this isn't too confusing- here it goes!

Today we had our first visit with CHOP. We started out with a 2-hour ultrasound followed by a 1.5 hour echocardiogram. At that point, the radiologist was able to rule out any extra developmental problems in Hayden-meaning his heart issue is the only focus. We then met with a cardio specialist and a coordinator of the hospital. The cardio specialist saw the drawn pictures of Hayden's heart from the NJ specialist and agreed that he gave us a good visual of his heart to date. He also agreed that Hayden has aortic arch issues that also need to be dealt with within 1-2 days of life. HOWEVER- the specialist we saw in NJ last Friday basically told us that Hayden's heart was done growing, it would no longer grow and would most likely only become smaller as time in utero progressed. Today, the specialist told us he is more optimistic than that and thinks there may still be a chance that Hayden's left ventricle could possibly show growth in the coming weeks in utero. If that happens, and Hayden's left ventricle not only grows, but grows enough to perform and work as a separate ventricle, Hayden WILL NOT need complete heart reconstruction (meaning he will not need the three surgeries- the Norwood, Glenn and Fontan). He will, no matter what, need open heart surgery within 1-2 days of life to repair the aortic arch. If Hayden's heart stays the size it is today, or gets any smaller, he will need the 3-step reconstruction we have been preparing ourselves for. The first surgery will be when they also correct his aortic arch.
This news leaves us both confused- as the specialist was telling us this, tears of joy poured out of me=- knowing and believing that prayer is most definitely working for Hayden!!! The other side of me was angry that the specialist we saw last Friday had given us a window of time to decide the fate of our unborn baby. I vocalized this to the doctors at CHOP and said the NJ spec. said it was one of the worst cases he had ever seen- why did he not give us any hope? They basically explained it to me like this- to him, it very well may have been one of the worst cases of Hypoplastic he has ever seen, but here at CHOP- this is what they do and they do it every single day. They also stated that this is definitely a serious case right now- but it does have what they think some possible potential to improve. They also assured me that the specialist we saw in NJ is a great doctor and that he, like any other doctor, was just doing his job by giving us all of our options. Unfortunately, the doctors today could not tell us what they personally thought would or might happen with Hayden's heart in the coming weeks- it really is unknown. For Rob and I, we both immediately cried tears of joy- and then were reminded by the doctors that this is so unpredictable. We left there wondering what to feel- as we both want to celebrate this strand of hope- we want to grab it and run with it. However, we both are so completely afraid that if we do, we will get our hopes up way too high and if his heart does not grow, we will be once again devastated by the news like we were a week ago Friday. Even as I write this I find myself getting too hopeful...I guess that’s only natural.
 So, what I am asking of all of you is to PLEASE have all the hope and faith that you possibly can that Hayden's heart will grow over the next 17 weeks- grow enough that he will not need the three-step reconstruction and both ventricles can function separately.
We want to again thank each and every one of you for your prayers for our baby Hayden- they are most definitely being heard! And thank you for your ongoing support as we continue on this unknown journey we have been dealt. Having such incredible support is most definitely what has gotten me through the last 12 days!!!
What next? We have our second appointment scheduled with CHOP on December 20th where they will do another echocardiogram and we will meet with the specialists again to see what changes, if any, have occurred in Hayden's heart. I am sure I will not be alone when I say I will be literally holding my breathe that day waiting for the results!!! I promise to keep everyone informed as we find out more information, but for now- KEEP PRAYING!!!!

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