Henrik Kieger

First post: Aug 27, 2022 Latest post: Feb 9, 2023

https://gofund.me/5a58fea3


Well, where to start? Ten days old and Henrik has had quite the wild ride and is keeping us all on our toes. We are moving updates to CaringBridge as it seems to be friendlier to get updates out and is easily shareable. 

Flashback to August 17 when Henrik was born…perfectly adorable baby and we had 24 blissful hours and were getting prepared for discharge. During his 24 hour testing, Henrik failed his coronary heart defect test and was admitted to the NICU at St. John’s Hospital. After some testing there, they determined Henrik had persistent pulmonary hypertension (PPHN) and needed oxygen to help his lungs and heart adjust to life outside of the womb. But after a couple hours, he started to decline and the doctors at St. John’s opted to ambulance transfer him to Masonic Children's Hospital for better help at their level IV NICU. This whole thing was quite shocking to Chris and I as we were anticipating being discharged after his testing. 

Once at Masonic, doctors were very concerned about the pressure in his heart and connected him to a CPAP to force oxygen into his lungs. He spent a day resting and then seemed to be improving. The improvements continued enough that he was moved to a high flow cannula and was able to get food orally (breast/bottle) and also be able to move around in his little bed more. For a couple days the high flow was going well and Henrik graduated to low flow oxygen. But overnight, Henrik had a decline of oxygen saturation and was put back on his high flow. 

That next day, Henrik was fussy and it eating so they opted to reinsert his feeding tube. As his fussiness continued, his numbers rapidly declined and doctors were rushing to try and get him more stable. They quickly moved him to a CPAP to try and help his oxygenation but it wasn’t working how they hoped. His numbers continued to fall and he started looking worse and worse. Doctors from the Cardiovascular NICU (CVICU) came in to take another echocardiogram and noticed his heart pressure had skyrocketed. Henrik was put on a ventilator, then moved from the NICU to the CVICU. 

Once at the CVICU, his numbers stabilized but doctors are working to figure out what the exact cause of all his fluctuations are. Things we know now: Henrik has a leaky mitral valve that is causing pressure on the left side of his heart to rise, the hole between his atriums (which is normal for newborns) most likely won’t seal shut like it is supposed to due to increased pressure (but the doctors are okay with this because without it, his heart would be way too pressurized), his oxygen levels have been good since being in the CVICU but his blood pressure randomly drops. 


We appreciate everyone’s support as this entire ten days has been a total whirlwind for us. I will work to update this CaringBridge daily to keep everyone in the loop with as much information as we know. 

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