Transformation: NICU to Home life
There were pros and cons to AJ being in the NICU. Starting with the cons, finding childcare for my other children and spending time away from them was a difficult adjustment, consenting to treatments I didn't necessarily approve of was hard, and putting all my trust into the hands of the staff assigned to AJ's case was something I had to get used to. Then of course there was also the NICU rules. At Edwards, only mom, dad, and grandparents accompanied by parents allowed, no personal baby items, and no food or drinks in the room. At UIC, the NICU rules were more family friendly, but this was my least favorite hospital that AJ stayed in.
Maybe we were spoiled at Edwards with AJ having his own room, but at UIC AJ was grouped with 4 babies twice, then 8 after his surgery, and changed to 3 different rooms in the 5 weeks he was there. They do not have personal rooms for NICU patients only a critical and least critical levels. UIC is a teaching hospital, which means students and "residents" preparing to graduate with their degree are trained here. So, instead of having a team of one Doctor and one nurse assigned to AJ, there was a group of no less than 5 of each. Some touching AJ and others watching, in about a 16 by 20 ft room coming to update me about AJ. For privacy, they provided room dividers so mothers could do skin to skin, pump, or hold their babies, but with the limited space in the room this made it extremely uncomfortable to do so. Especially if another mom or dad was visiting their baby as well. I also had to pay for parking EVERYTIME I went to see AJ. I actually calculated how much I spent from my Park Chicago App and it totaled to $85.39 from July 31- September 13, 2023. However, parking was free on Sundays and after 10 p.m. until 8 a.m., and visitors over 21 were allowed to see AJ as long as they were accompanied by a parent.
I also enjoyed the Ronald McDonald house at Edwards hospital and the cafeteria at UIC. Lactating mothers, whose child was in the NICU, could order any item from the cafe free of charge and Ronald McDonald house was open every weekday from 8 a.m. until 5 p.m. Edwards also provided a room for families wanting to sleep overnight. Whereas when I slept at UIC, I was in the room with 4 other babies and the nurse on duty. I used the family room once at Edwards and it was very welcoming, but I preferred to sleep next to my baby and this room was located in another part of the hospital.
The biggest pro, and I cannot be more grateful, from both hospitals was that AJ had onsite care. If Julius or I had questions or concerns, we could address them head on. They would send the Doctor from the specialty to the room or have them call us and we would converse. Now that AJ is home, I have to schedule an appointment and wait. If further testing needs to be done, we're looking at about 2 weeks before we hear anything back. Oh, and trying to find a NEW specialist, forget about it. In the hospital they gave us such good resources for when AJ gets out and who to see, but I kid you not, once I started setting up some of the appointments when he was home there was always an issue. Insurance being the main one followed by not taking any new patients. Most of AJ's specialty Doctors are 30 miles away from home... 30. I used to go to appointments alone, but after many failed trips I started asking my mother to accompany me. I tried so many times to switch up the routine before leaving the house to accommodate AJ, timing feeds and limiting stimulation, but nothing worked. Safe to say car rides are not soothing for baby AJ.
In the NICU, the nursing staff would be on top of medications and prescriptions. At home, the pharmacy needs a 24-48-hour notice AND we have to schedule an appointment ahead of time, every time, before AJ gets his medication from the pediatrician. At all three hospitals, AJ was fed every 3 hours around the clock. The only time they weren't every 3 hours was if he had just come out of a procedure or surgery. At home, feedings are never on time. I am either concerned about his baby acid reflex, him chocking during feeds, and wondering if he's comfortable or digesting it well. There is just so much anxiety and overthinking that has gone into what's supposed to be a gradually enjoyable and tasty experience.
The biggest adjustment for me was having to navigate his care on my own. I'd stayed at the NICU so often and seen what works for him and what doesn't. I thought I had him all figured out. I was mistaken. In the NICU, providers talked to other providers which made it easier to receive an answer. As you can imagine, at home, it's not as simple.
Too many times, I've felt alone in battling with AJ's condition, and no one is concerned except for my husband, my mother, and myself. Feeling isolated and afraid may have worked for me while he was under the care of trained professionals, but when he is choking on his own phlegm and vomiting up every feed, it's terrifying to experience. On top of that, he's having involuntary movements of the limbs and head, his little heart is panting fast, and he's severely agitated. I was never made aware that AJ had such neurological disorders. The first time I witnessed it happen was when AJ was at home. I assumed it was because he was sick but turns out it happens anytime he is over stimulated.
So yes, I can nitpick about pros and cons of each hospital that I personally felt like where minor inconveniences, but I can't deny that I slept better at night knowing that if something where to happen or go wrong, he would be fine in the NICU.
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