Hand to Hold's Official Blog: Written by Parents for Parents

Danielle’s Birth Story

I’d like to share the story of my full-term baby who endured a 20 day stay in the NICU.

My husband and I married in Nashville, TN, in February 2012. He was 23 and I was 19 (he, in the Army and I, a professional ballet dancer) . We decided to wait a few years to have children, but just four months later, we found out we were expecting. After the initial shock, we were very excited. My husband was being released from the Army and we planned to move to Michigan to be with my family. Early morning rehearsals, 25 hours a week in the studio, and terrible morning sickness made for a rough first trimester.

Upon entering my second and my contract being up with my company, I thought things would get less stressful. At our 20 week ultrasound, we found out that our baby was a boy, who we decided to name Noah. But then the doctors said they found something. Our beautiful baby boy had a mass in his left lung. Devastated, I was assured that it wasn’t a rare thing and that it could go away on its own but I would still need to have a more detailed ultrasound to make sure. 
One week later (one of the longest weeks of my life) I went back. The doctors told me Noah had a congenital cystic adenomatoid malformation or CCAM. A massive cyst was forming in place of the bottom lobe of his lung. I got steroid shots in hopes of stopping the growth of the cyst and jump-starting the growth of the lung and was seen for ultrasounds every two weeks. 
In December, we moved to Michigan and were transferred from Vanderbilt to the University of Michigan. Our first visit there showed stability, but with visit number two came bad news. Noah’s CCAM had grown. I began getting weekly ultrasounds to check for cyst growth and hydrops fetalis as well as fetal echocardiograms (the CCAM was so large that it was pushing Noah’s heart to the right side of his chest), MRIs, and numerous meetings with surgeons. Noah’s CCAM was one of the biggest UofM had ever dealt with. Much research was done and there was talk of draining Noah’s cysts in-utero, an EXIT procedure, attempting a vaginal birth and operating on Noah later, or doing nothing and seeing how Noah reacted. Finally a decision was made. I would deliver my baby via an EXIT procedure. We went over the game plan every week so I knew all the details of how the EXIT would go. ECMO would be available if he needed it. His heart should move back to the left. They said if Noah was a “little rockstar” he would be in the NICU for 4 weeks, minimum.

March 5th was the day. I got to the hospital at 6a.m. feeling incredibly nervous. I knew all the possible outcomes of that day and was certainly hoping for the best. As I was wheeled into the OR, I was overwhelmed by how many people were there waiting for me and I started to cry. The room was heated to 85 degrees (to keep Noah warm) and 28 people crowded in for the procedure. The surgeons held my hand and told me everything was going to be okay, and sang happy birthday to Noah. Then I was put under and we got started. Once I was sedated, the procedure started like a normal C-section. After the incision was made, they delivered Noah only to the waist (so that he would remain on placental support) and sedated him before placing a breathing tube. They cut horizontally just under his left arm and separated his ribs and the cyst bulged out of the opening. It had to be drained slightly and then it was removed, being the size of a 6 ounce steak in the end. A chest tube was put in to drain the excess fluid that would fill the empty space in Noah’s chest and then they stitched him up before delivering him the rest of the way. When he was stable, he was immediately whisked away to the NICU.

It was several hours before I was able to go see Noah. Finally, after what seemed like an eternity, they wheeled me down, hospital bed and all, to see my baby. I will never forget it. He was the most perfect thing I had ever seen, even with all his tubes and wires. 7 pounds, 20 inches, and lots of hair. I was only allowed to touch his little leg through the isolette but spent as much time with his as possible.

On his third day of life he was extubated and I heard him cry for the first time. He was doing great until his oxygen level suddenly dropped to 30 percent and he turned blue. But my little boy was strong and stabilized pretty quickly. The next day he was well enough for me to hold him. He was doing bolus feeds through his NG tube, but issues arose days later when he was switched form continuous feed to every three hours. He was throwing up every time he was fed and was starting to lose weight. They did an upper GI and an endoscopy only to find that his stomach was a little slow to empty and they were feeding him too much.

On week two his chest tube was removed and he was healing perfectly. I was able to breastfeed him but they continued bolus feeds as well. He was still having issues keeping his food down and mother’s intuition told me it had something to do with the NG tube. I fought to try not using it but the nurses said no. I would weigh him on the breast scale, breastfeed, weigh him again, then they tubed the difference. He would usually throw up and then we’d start the process again three hours later. On day 18, I was told Noah was the healthiest baby in the NICU and they were short on rooms, so we were moved to the pediatric floor. Noah was healed enough to go home in a few days but the feeding tube would go with us. I begged them to let me try to exclusively breastfeed and finally got the okay from the surgeons. After 48 hours without the tube, we were approved to go home!

Noah is now five months old, super active, and perfectly healthy and tube free. He’s a little small for his age (only in the 8th percentile), but is ahead developmentally. The doctors say his lung should continue to develop through the years, and he’s expected to be able to live a normal, healthy life.

Aimee Sprik About Aimee Sprik

Aimee Sprik (IL) is mother to Connor, born unexpectedly early at 26 weeks, in December 2008, due to an infection. Connor, with his parents, survived a complicated 120-day NICU stay, which changed their lives forever. Since bringing her son finally home, she's felt passionately about volunteering her time and resources to supporting fellow NICU parents, both at the hospital where Connor was born, and by co-founding Life after NICU, an online parent support forum now moderated by Hand to Hold. You can follow Aimee on her personal blog, Sprik Space, or send her an email.

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