Updated: Nov 18, 2019
This is a very short update and I will be adding more- right now B and I are still trying to process everything and focus on Noah.
This is a huge day for baby Noah. It’s been 8 days since Noah was born and we are so thankful to have spent this last week with him before his surgery so we could cuddle and love him as much as possible. It's hard for Brandon and I to leave him, so we have slept at the hospital every night.
Noah’s surgery was originally scheduled for Wednesday but we received a call around 5 am that surgery was going to be pushed back. My heart dropped, ultimately thinking that maybe Noah was no longer a candidate for the surgery. But it was explained that it would just be reschedule for the next day due to an emergency case that arose.
Brandon and I were quick to get frustrated, not understanding why our little boy would be put on the back burner, but when we heard that Noah gave up his spot to a little girl that needed a heart transplant, we ultimately couldn’t help but to think how everything truly happens for a reason, and how sweet Noah was staying strong and stable for another day so a little girl could get a new heart!
It was tough for Brandon and I to look at Noah, and see this perfectly healthy looking baby and imagine why he needed this massive surgery. I have been an emotional mess, afraid I would be saying good by to the little baby I have become so attached to. But, as we watched Noah’s breathing worsen Tuesday and color change, we knew it was time for our baby boy to get this surgery and I finally felt more at peace with the day that was to come.
Thursday morning we spent sometime talking to Noah, telling him we loved him, how strong he was, and then we kissed him goodbye as they wheeled him away at 715AM to the OR.
Updates were given to us multiple times throughout the day by the surgeon’s PA, and short updates were given to us through an app. My mother, Brandon’s dad and friend all joined us for the stressful day and tried to keep us busy! As nerve racking as the day was there was a sense of peace over us that was unexplainable.
Each update was positive and Noah was not throwing them any curve balls which was such a relief to hear. The surgeon had a couple decisions to make once he saw Noah’s heart, which shunt to use, and if he was going to repair the TVR (Tricuspid Valve Leak). He ultimately decided to use a Sano Shunt, and he did decided to repair the valve to fix the leakage.
The work that these surgeon’s do is something I will never understand! Brandon and I both are intimidated when we speak to him.
Although I ask the question, why? We have been reminded how blessed we are to give Noah a chance.
The morning of Noah’s surgery I ran in to a sweet family that Brandon and I had met at a class during the pregnancy, she had just delivered her baby this week and received the news that her precious baby girl was inoperable and they were going to have to let her go. Our heart hurt for them, and it opened our eyes to a whole new perspective.
Noah surgery was finished around 6 PM, and we were able to see him. As much as the nurses and doctors prepped us for what we would see when Noah was out, there was nothing that could fully prepare. Our baby boy has multiple tubes down his throat, is intubated, on dialysis, and has a million lines plugged up to him. We were told that his chest was left open due to swelling and an abnormal rhythm issue. We walked in to our new room, where our baby boy lay, chest open as his heart pumps right before your eyes. I unfortunately couldn’t keep it together and had to leave the hospital for the night but Brandon stayed with Noah and I returned in the morning.
After the Norwood, the first 24-72 hours are the most critical, as Noah’s body adjust to his new anatomy. he is still on a lot of support and day by day they will let his body take over more and more.
By the Grace of God, Noah has remained stable, but there have been multiple times he has woken up and gotten very upset and tried to move. He is currently restrained, and they are having to keep him sedated and comfortable. Saturday morning, if everything remains stable, Noah is scheduled to have his chest closed, which is a huge step in the right direction.
Please pray for Noah's recovery to continue to be stable! He is so so strong already. We can't wait to hold our baby again.