Tukker's NICU Journey

When I was almost 15 weeks pregnant with my second baby my water broke. The technical term for this is premature rupture of the membranes, or PROM. I began leaking fluid, so I made an appointment with my doctor because I knew something was wrong. My doctor did an ultrasound later that night, but I still had amniotic fluid and the baby was sitting right on my bladder, so he just thought I was suffering from incontinence. I’d never heard of PROM and didn’t even know it was possible for your water to break that early, so I didn’t second-guess my doctor.

I kept leaking for the next 5 weeks but thought it was just incontinence and didn’t really worry about it. Then at my 20-week ultrasound we discovered that I had almost no amniotic fluid left, so my doctor sent me to a specialist where we learned that my membranes had ruptured 5 weeks before. Babies practice “breathing” with amniotic fluid and that’s what triggers their lungs to develop, and since my little boy had been without fluid for so long we were told he wouldn’t survive. Our doctor thought he would be stillborn before making it to viability, but said that even if I managed to stay pregnant until 24 weeks my son might survive the birth, but wouldn’t have enough lung tissue to sustain his life for more than a few minutes.

There wasn’t anything the doctors could do for us – we were even advised that we could terminate the pregnancy — but I put myself on bed rest and waited to see what would happen. Despite leaking amniotic fluid all the time, bleeding almost constantly from 21 weeks on, and having lots of contractions, I managed to stay pregnant until 27 weeks 1 day, when my little man decided he’d had enough and made his arrival into the world.

He made one tiny little cry—like a baby kitten—after he was born, and then the NICU team took over and I didn’t see him again for two hours. He had to be resuscitated shortly after he was born, and it took the NICU team an hour to get his lungs to open enough that they could put him on a ventilator. His sats were in the 50s for that first hour, so we were warned he would likely be severely brain damaged from having such little oxygen for so long.

We named him Tukker, and held on as our NICU journey began. Because Tukk had been without amniotic fluid for over 12 weeks, his lungs were very sick. The doctors estimated that they were the size of a 24-weeker, so they were very small and weren’t doing a good job of oxygenating his blood.

Tukker’s NICU stay was filled with many scary moments. He was critically ill. He had severe pulmonary hypertension, staph infection, pneumonia, chest tubes, and a Broviac line.

Tukker got to try his first feeding by mouth on his due date. He struggled with this, and we finally figured out that he had trouble swallowing unless his milk was thickened. Once we stopped trying to breastfeed and instead bottle fed him with Simply Thick added to his milk he did much better.

Just after he hit his due date he was finally transferred to nursery B. He had never even moved spots in nursery A, so we were ecstatic that he was finally well enough to be moved to nursery B. It took him about a month to figure out the eating thing, but after 115 days in the NICU we finally got to bring him home. He was on oxygen and an apnea monitor, but we didn’t care. We were so happy to have him home with us.

Tukk spent 13 weeks on the oscillator ventilator, 5 days on CPAP, and almost a year on oxygen. He had hernia surgery when he was about 6 months old (3 months adjusted) and surgery to remove a cyst in his eyebrow. His right hip was dislocated, probably because of being positioned funny in the womb without fluid, so when he was 15 months old he had hip surgery to repair it and spent 3 months in a cast that went from his armpits to his ankles. He’s had some gross motor delays, but he began walking just after his 2nd birthday.

He’s turned 2 this summer, and now he’s doing so well. We think he’s amazing. He’s walking, talking, climbing everything, and getting into all sorts of trouble with his big brother. We know how very blessed we are to have this little miracle man here with us, and we’re thankful every day for him.

Misty