Medical Baby - DJ’s First Couple of Months
In my previous blog, I wrote about DJ’s trip to the emergency room followed by a transfer to the NICU just 11 days after he was born. It was the saddest and most difficult day of my life. The day ended with Ishtar and I having to leave our son in the very capable hands of the nurses in the NICU at Boston Children’s Hospital. We needed to get some rest but were eager to be right back by his side early in the morning.
The medical team confirmed that DJ didn’t have a virus or COVID so he was moved from a quarantine room in the NICU to the general floor. A melancholy feeling filled the room full of babies with medical needs. The nurses, stoic and focused in their work, calmly but quickly moved from station to station, baby to baby. By now, we knew that our son’s VSD was causing his symptoms. Now the medical team needed to figure out the correct medication and dosage while monitoring DJ. The day before, DJ was provided with an nasogastric tube (NG) to support his feeding while he was on high flow O2. He was thankfully able to resume eating at a normal cadence the night before and was eating my mouth again. We used every chance we could to hold our brave little heart warrior in our arms. After two nights in the NICU, DJ was moved into an in patient room.
Once DJ was transferred to an in patient room, we had such wonderful nurses that helped us around the clock. We were finally able to stay with our son in the hospital. At this point, I was at much more ease, knowing that DJ’s condition would be able to be managed by medications. After a few more days of in patient care, the medical team figured out the necessary medications and DJ was eating the necessary amount by mouth and showing that he was gaining weight again. We were able to have the NG tube removed and were discharged with four medications and a strict feeding schedule.
Though we were discharged, we still had very frequent appointments, two or three times a week, to check various things for DJ, but most importantly his weight. His heart condition caused his heart to work harder and burn more calories than normal. Over the course of the next two months, DJ gained about fourteen grams per day, whereas babies without this type of heart condition would gain around thirty grams per day at this stage. At one of DJ’s cardiology appointments, his cardiologist put him on the schedule for open heart surgery in the event that DJ was not gaining weight fast enough and the VSD didn’t show any signs of closing on it’s own. The surgery was on the schedule for October 15, 2021. The mere thought of this was almost unspeakable. But we had time to see if the VSD would start closing on its own. Despite the slower weight gain, we had the privilege of seeing him grow, learn new skills and develop his own little personality. We cherished every moment with our son in this early phase of his life as he became more and more familiar with his surroundings.
Feeding was the most difficult thing that Ishtar and I had to deal with in these early months. DJ would clearly show us his hunger signs and do his best to drink until he was too tired to continue. The heart condition made this normal task very difficult for him. The doctors had us on a strict feeding schedule around the clock, feeding him eight to ten times a day. He took anywhere from ten milliliters to ninety milliliters of fortified breast milk. He was drinking fortified breast milk to give him more calories to support is weight gain. Ishtar and I each had our difficult moments and break downs.
Holding my son in my arms, I would speak to him, plead with him, plead with God to give him the strength to drink more milk. Sometimes thirty to forty minutes would pass like this, only to realize that he only took a small amount of milk. DJ was also prone to spit ups so we had to hold him upright for more than thirty minutes after the feeding completed. After a feeding and resting session that lasted more than one hour, we would be able to put him down and maybe have one to two hours to rest before the cycle began again. There were times where I maybe pushed him to eat more than he wanted to, something I will always regret. This pattern for feeding him was soul crushing and filled me with sorrow at times, with the feeling that I was failing my son, stuck in a dark place with no light at the end of the tunnel.
Slowly but surely, as DJ grew at his own pace, he started eating better and better. Despite DJ doing better with his milk intake in September of 2021, the cardiology department at Boston Children’s Hospital asked us to go in on September 28th, 2021 to have DJ get an NG tube put in to support his weight gain. This all felt a bit sudden since we had been in constant communication with cardiology about his milk intake and frequent appointments with our pediatrician. I questioned why they were giving DJ the NG tube now instead of earlier. I never received a good explanation of this. DJ became an in patient again upon receiving the NG tube. We were still hopeful that we could avoid surgery and that the VSD was closing on its own. But the following day, we were told that DJ’s surgery could be moved to a sooner date, October 1, 2021. While Ishtar and I were prepared mentally that DJ could have surgery, we didn’t expect that this trip the the hospital would be for this reason. In our minds, we went from DJ eating on his own just hours ago, to now getting fed via NG tube and impending open heart surgery for our baby boy who was not even three months old.
The two pictures above are what I dubbed as DJ’s “stress fist.” This was an adorable behavior he had the first few months of life where he would clench his fist at his chest to show that he was uncomfortable with the situation he was in. I’m sad that this cute behavior was so short lived.
