Hi, all!
My little Z is a NICU graduate and I just wanted to share my experience and encouragement.
He was born a month early and had some issues feeding and was very small. My partner had a difficult pregnancy and was very I’ll with preeclampsia, which prompted a C-section in late March. He was discharged from the NICU after a few weeks. Now, it was time for him to grow.
We knew Z had a congenital heart condition called Tetralogy of Fallot from a few months into our pregnancy. The severity and exact symptoms of TOF tends to vary widely; Z’s is a moderate case. To make it somewhat simple, his pulmonary arteries were smaller than they should be and a series of holes between his ventricles made it difficult to get enough oxygen where it needed to be.
As such, he was subject to blue spells. This meant he would cry because his heart would make him uncomfortable, which would make him cry harder until we were finally able to calm him down. We were able to successfully get him back down from his blue or “tet” spells on a number of occasion, except one — a few days before surgery.
We were staying close to the hospital as we prepared for his operation. He started crying and couldn’t calm down. His skin started to turn blue, which meant his O2 wasn’t circulating as it should.
My partner and I literally ran him to the hospital. That night in the ER is something I hope I never have to live through again. Thankfully, with the combo of a savvy ER team and plenty of love from Mom, he came through the night just fine.
Fast forward a few days and Z made it through open-heart surgery just fine. He was in pain and confused and wanting to go home (same, buddy), but the important thing was he was on the mend. He was released to us again after a few days.
Unfortunately, he suffered a setback when his lungs filled with fluid, a not-uncommon complication with open-heart surgery. So he was re-admitted, much to our heartbreak. Day after day we waited and finally his lungs looked clear enough to send him home with us. He needed antibiotics to clear the rest, but Z made it through.
The timeline is vague because it all kind of ran together, but I believe we’d been staying near or in the hospital for about two cumulative months. My job (working remotely) helped and hindered our mental health throughout. It was nice to be occupied but it was just one more thing, you know?
We had family support, which was great, and the NICU staff and everyone who helped care for Z was wonderful. I can’t imagine going through this without them.
To anyone fighting to be healthy in and out of the NICU, I’ll say this: when you feel your well is empty, I can assure you that there is untapped strength within all of us for that day-by-day battle. There’s always more to draw on. You are strong enough. I hope this community and beyond can be that source of strength when the well runs dry.
Z is a bit over 9 months now. He’s sitting up on his own, babbling, laughing and playing, and he has a cool scar to show for his troubles. I don’t know what surgeries lie ahead for him, but he’s my hero and I love him so much.
Anyway, I hope this was an encouragement to anyone who needs it. You’re doing amazing, and so is your little one(S).
My little Z is a NICU graduate and I just wanted to share my experience and encouragement.
He was born a month early and had some issues feeding and was very small. My partner had a difficult pregnancy and was very I’ll with preeclampsia, which prompted a C-section in late March. He was discharged from the NICU after a few weeks. Now, it was time for him to grow.
We knew Z had a congenital heart condition called Tetralogy of Fallot from a few months into our pregnancy. The severity and exact symptoms of TOF tends to vary widely; Z’s is a moderate case. To make it somewhat simple, his pulmonary arteries were smaller than they should be and a series of holes between his ventricles made it difficult to get enough oxygen where it needed to be.
As such, he was subject to blue spells. This meant he would cry because his heart would make him uncomfortable, which would make him cry harder until we were finally able to calm him down. We were able to successfully get him back down from his blue or “tet” spells on a number of occasion, except one — a few days before surgery.
We were staying close to the hospital as we prepared for his operation. He started crying and couldn’t calm down. His skin started to turn blue, which meant his O2 wasn’t circulating as it should.
My partner and I literally ran him to the hospital. That night in the ER is something I hope I never have to live through again. Thankfully, with the combo of a savvy ER team and plenty of love from Mom, he came through the night just fine.
Fast forward a few days and Z made it through open-heart surgery just fine. He was in pain and confused and wanting to go home (same, buddy), but the important thing was he was on the mend. He was released to us again after a few days.
Unfortunately, he suffered a setback when his lungs filled with fluid, a not-uncommon complication with open-heart surgery. So he was re-admitted, much to our heartbreak. Day after day we waited and finally his lungs looked clear enough to send him home with us. He needed antibiotics to clear the rest, but Z made it through.
The timeline is vague because it all kind of ran together, but I believe we’d been staying near or in the hospital for about two cumulative months. My job (working remotely) helped and hindered our mental health throughout. It was nice to be occupied but it was just one more thing, you know?
We had family support, which was great, and the NICU staff and everyone who helped care for Z was wonderful. I can’t imagine going through this without them.
To anyone fighting to be healthy in and out of the NICU, I’ll say this: when you feel your well is empty, I can assure you that there is untapped strength within all of us for that day-by-day battle. There’s always more to draw on. You are strong enough. I hope this community and beyond can be that source of strength when the well runs dry.
Z is a bit over 9 months now. He’s sitting up on his own, babbling, laughing and playing, and he has a cool scar to show for his troubles. I don’t know what surgeries lie ahead for him, but he’s my hero and I love him so much.
Anyway, I hope this was an encouragement to anyone who needs it. You’re doing amazing, and so is your little one(S).