NICU staff is amazing
After parking ramps and long hallways (thank goodness for the wheelchair!) we made our way to the University of Minnesota NICU. After much scrubbing we were reunited with him. It was late on a Friday, so his surgery (oomphalocele repair) would not be done until Monday. There were many tests done over the next week and it’s all such a blur, but the staff in the NICU was amazing and so friendly. There were so many doctors and nurses, and I was so thankful for my midwife right there by my side to help me understand and she thought of wonderful questions to ask as we spoke to the different specialists.
Feeling overwhelmed
I remember sitting down with one doctor and he explained to us that children with Down’s syndrome (or Tri-somy 21) may oftentimes have several different anomalies as well. Because of this, they were searching for them with our son. His digestive issue we had already seen, with his intestines being inside his umbilical cord still. Additionally, they found an issue with his heart, and his upper spine. It is also common to have anomalies with their digits (fingers and/or toes). Our son had an extra thumb on his right hand, and his toes were spaced unevenly. It felt so strange as he explained all of this to us and I imagined what this would look like, but I remember him saying that our son had all of the “best case scenarios.”
Finding things to be thankful for
For example, as a digestive issue, some children get hernias and have so many hospital stays throughout their lives. For our son, it would be a one-time surgery, and likely, no more trouble. Hopefully his heart defect would be just a one time surgery as well. His spinal anomaly would likely not give him any trouble at all throughout his life. I noticed all of the other babies in the room and the other parents that came and went. Some of them had been there for many months. I really felt very thankful that our situation wasn’t worse than it was.
Surgeons and NICU Nurses
His surgery went very smoothly, and he got his very own “manmade” belly button. We had to wait 24 hours for his intestines to “wake back up” and make sure that everything was working properly. The nurses kept asking us what his name would be and we chose the name Timothy Gabriel. We met with several different doctors to discuss and look at his different anomalies and how they would affect his life. His surgery was healing wonderfully and after a week, the surgeon began asking, “why is he still here?”
Why are we still here
The battle really became eating… how to get him to eat enough to know that he would thrive at home. Children with Down’s syndrome can have difficulty with the “suck, breathe, swallow” instincts. When he would nurse, I could tell my milk was letting down, I could see his latch was good, and I could hear him swallowing. We’d nurse for 30 minutes or so, I’d burp him, and we’d do it again on the other side. Seemed fine to me. He had plenty of wet diapers. Well, the NICU nurses would put an NG tube down his nose after nursing and “pump” his stomach to see how much went in (and put it back after). It was absolutely empty. I was flabbergasted. How could his stomach be empty? So, it was decided, that I would pump and bottle feed while we were in the hospital, and I would transition over to nursing as he got older.
>> I have since learned from a NICU nurse friend, that nurses frequently do NOT put the tube down far enough. Ugh! That makes perfect sense. But to be honest, bottle feeding him and working with the occupational therapist was a really great experience<<
Thankfully, an acquaintance heard about our situation and gave us their high quality breast pump. This was such a Godsend. I had no prior experience with pumping to compare it to, but a good pump make it so easy. At least if I couldn’t nurse, I could at least still give him my own milk.
Occupational Therapist
Because of the “suck, breathe, swallow” and “low muscle tone” issues the he dealt with, we had an occupational therapist come and teach me how to bottle feed him. She was also very encouraging that I would be able to nurse him eventually as well. She suggested that I just nurse him for his nighttime feeding, instead of giving him a bottle. The most important part of his bottle feeding sessions, was that I watch his breathing. If he doesn’t stop sucking to take a breath, my job was to remove the bottle… wait for him to breathe, and then offer the bottle again. If I didn’t take the bottle away, he would start to turn blue from lack of oxygen. It took a little while for me to get the hang of bottle feeding him. My fingers would cramp up trying to hold the bottle as well as support his tongue, but after a few days we were in a good rhythm. Timothy had to prove that he could take in 20 mL three consecutive times before they would release him, so we were working up to that.
Balancing the NICU and home life
Now, all this time, I had four children still at home, and my youngest was 18 months old. They were not allowed to go to the NICU and would have to wait until their new brother came home to meet him. I would spend the night at home each day, and then drive an hour to the NICU and spend the day with Timothy. Then get home around 6pm. Both of our mothers would take turns spending the day with my littles at home while we were at the hospital and every now and then, we’d give our mothers a break and I’d go visit Timothy alone. All starting the day I gave birth. It was exhausting. My children (who had rarely ever had a babysitter) were now thrown into this new, crazy world. Now, they adored their grandmothers both, but this was still very difficult for everyone.
I can’t believe this is happening
One day, while we were driving home, my mother in law commented that my youngest had been sick and feverish. She was sleeping soundly, but wanted to give her some medicine. Since I was almost home, I asked her to wait and let her continue sleeping. When I got home, I held her in a rocking chair and she began to seize. I had never seen a seizure before but we instantly knew that’s what it was. This was 3 days after Timothy was born. I had a quick “I can’t believe all of this is actually happening to me” moment as we called 911. By the time the paramedics arrived, she was done seizing and her fever had dropped. They explained to me what a febrile seizure was and that we should bring her in immediately in the morning (if we wanted to avoid the ER that night). We did that and she recovered fine from the stomach bug she had and never again did she have another seizure.
Failing at everything
Physically, this was turning in to my fastest recovery. I had started walking through the halls a couple days after he was born, as it became more difficult to find an available wheelchair. I was still resting most of the day just sitting with Timothy, but I think the walking really helped to shrink down my uterus nicely. Emotionally, however, this was a very difficult time for our family. Though I was absolutely loving all of the time I was spending with my husband, my children felt very neglected by me. Our mothers were exhausted from watching 4 active children, and the nurses acted like I was never around. I was working harder than I ever had before, and felt like I was failing everyone. This had to end.
Time to go home
One morning on the phone, as I was driving alone to the NICU, the nurses were getting me up to speed with everything that had gone on since I left the previous evening. She mentioned that they had reinserted Timothy’s NG tube. “What? Why” I asked. She explained he had turned blue during a bottle feeding during the night for the nighttime nurse. Ugh! I was so frustrated. If the occupational therapist can teach me how to watch for his breathing, why can’t they teach them? We knew then that I needed to start sleeping there as well. I needed to be with him for all of his feedings to prove that we could handle the bottle and get him home.
Checking all the NICU boxes
It was the weekend and the staff was able to get us his own room. I was able to just set up camp with him and we were on a mission. By Monday morning, we had checked off all of the requirements we needed to get home. I was in shock when the “head” doctor came in from vacation (we had never met her before) and told me, “Oh, honey, you won’t be going anywhere today.” Ummmm, yes we are! I thought. One quick call home to my husband and he made it happen. It had been 3 and a half weeks in the NICU and we were ready.
Meeting their little brother
It felt so amazing to bring him home. Both of our mothers were there to welcome us and our children finally got to meet their new little brother. It was wonderful. The NICU had sent us home with dolls and doctor kits for each of my children and books all about “our baby with Down’s syndrome.” Sure, We had had a few minor moments of frustration, but as a whole, the NICU had been so supportive of us and was such a wonderful experience. Their nurses really are unmatched!
Welcome Home, Timothy!!
