Elizabeth’s Birth Story

April 6, 2013

I wanted to share my story of my full-term baby who spent 33 days in the NICU, followed by another 33 days in the PICU, then another 22 days on a “regular” floor. I just think it is important that people know that there are those of us who have experienced long NICU/PICU, hospital stays, and related delays with full-term babies.

After almost 2 years of trying to get pregnant, my husband and I finally got our wish; We were pregnant!!!!! Everything was going very smoothly. No morning sickness, crazy cravings, excessive weight gain, etc. We were on Cloud 9. When we had our first trimester screening at 11-12 weeks the doctor saw something that caused concern. He had a horrible bedside manner and kept saying that the baby had too much fluid here and too much fluid there and that he had deformities. I was heartbroken and when they told me to consider the amnio to see if I wanted to abort the pregnancy, I was absolutely LIVID. I left the office crying and pretty much told them where to go for even suggesting it and having no heart in the matter. At 16 weeks I got a second opinion and lo and behold everything looked great. They had no idea why the other office had suggested such extreme measures, and that the baby looked great. They suggested some more routine monitoring just in case there was an underlying problem that they couldn’t see yet that would cause the first ultrasound issues.

When I was 24 weeks pregnant during a routine ultrasound, my husband and I found out our little boy had a very complex and serious heart defect. I felt like I was hit with a ton of bricks. I started gaining a lot of weight and my stress level was through the roof. I was working a full time job, I had to switch to a high risk OB/GYN, and had bi-weekly fetal monitoring/ultrasound appointments. At one of my many appointments at 39 weeks 1/7, I was told my amniotic fluid level was a little too low for comfort, and I was close enough, so they decided to take me directly to labor and delivery and induce me. My husband arrived an hour later and the adventure began. After 13 hours of labor, our handsome little miracle was born at 3:01pm: 7lbs 3.4oz, 19 inches long. Before I could even hold him he was whisked away to the NICU and had a lifesaving IV put in. After I recovered I was brought down to see him. He was perfect. Now the wait for his first open heart surgery began.

Our NICU stay was very emotional. During his 33- day stay our son, Jakob Danger, was not allowed to eat anything. All his nutrition was via an IV. It was so hard seeing him like that, so helpless. I was afraid to hold him because I was terrified that I would mess up the IV that was keeping him alive. I still held him daily despite my fears. He was so big compared to the other babies in the NICU, that I was having the hardest time trying to understand why we were there. Every day we were waiting to hear when the big surgery day would be. It always seemed like something was delaying us (stroke, infection, surgeon unavailable). Finally after 33 days, he was going in for open heart surgery. My husband and I were so scared. Such a young boy and such a big surgery. On top of the surgery, we were told as they were wheeling away that he had a very rare chromosome abnormality and that we would have to wait and see how that would affect him later in life. The NICU staff failed to inform us that he had this condition and didn’t know anything about it. Luckily a geneticist told us that he lost little to no data when the DNA formed the ring. Finally, a slight piece of good news. 

His surgery went very well. The surgeon was so happy with how big and strong his heart was. We were transferred to the PICU immediately after surgery where he was still intubated and had about 18 IVs, chest drainage tubes, a catheter, and a brain perfusion monitor. Our little baby made it through surgery but came out looking like a machine. Slowly everything was removed and he started to look look more like our little baby. Now the intense struggle of feeding was about to begin. We spent another month in the PICU trying to get him to take a full feed. Many swallow studies and therapies, and he still wasn’t taking more than an ounce (on a good day). He was soon transferred to a “regular” floor.

Once we were on the regular floor we struggled for another 3 weeks with feeding and eventually had to make the decision to have a g-tube put in. After his g-tube surgery we were transferred back to the PICU for observation. Everything looked great and he seemed to tolerate the g-tube feeds as well as he handled the NG tube. After 24 hours we were sent back upstairs to the regular floor and spent our last 5 days there. FINALLY we were going home! Of course we knew we had many more struggles to come but we could handle these at home in our own environment. 

Since his discharge we have had a lot happen. Daddy deployed for 4 months, he had 2 GI bleeds (with hospitalization), and another heart surgery. I am very thrilled to say that we have a very happy almost 2 year old. Jakob still has a g-tube and a few delays, but he is so mobile and is trying to talk. We currently are still in occupational therapy, language and speech therapy, and have many follow ups. But, it is amazing to see how far our little miracle has come. 

My message to everyone is to never give up hope. There will always be good days and bad days and most importantly a NICU/PICU stay is traumatic, even if your baby was born at 39 weeks.