Rose was born on July 24th. The c-section went smoothly and from walking into the OR to heading back to our room it was only 40 minutes long. Her apgar scores were great 8/9. Due to me having diabetes, she was on the maternal diabetic protocol and her blood sugar was low. They gave her the gel twice which helped her go up but she wasn't able to get it to stay up on her own and feeding wasn't going well so at 5AM the next day they took Rose to the NICU. We were expecting Rose to get better quickly but were saddened that they had to put her on a sugar drip and all of the wires in the NICU. It was also a strange situation because of COVID. Everyone was wearing masks and Rose only saw masked faces, all day long. We would drop our masks in private so that she could see our faces. I fought hard for a private room, as especially with my own health issues it was a risk us being there at all during COVID. Due to COVID - we weren't able to come and go (we were only allowed to enter the building once a day) and there could be no other visitors. Rose met family and close friends via Facetime. After a few days once her sugars stabilized, we got moved to the continuing care section of the NICU that was for less serious situations. It was a larger, yet pretty small space and there was a door we could close. They respected my wishes regarding having a private room.
Unfortunately while her blood sugar got better within a few days, she ended up with larger things going on than expected. Rose struggled to get a good seal on the bottle that didn’t get better and had hypotonia - which is when the natural tone in your body is lower than normal. They kept going back and forth between it being a mild or a moderate issue and what I got out of it was that it was more mild but due to the feeding difficulties...that brought it closer to moderate. Rose’s muscles are strong and working on tummy time will get her where she needs to be but it may take her longer than others to meet those gross motor milestones. Hypotonia, while it can be a diagnosis in itself, is generally a symptom of a greater diagnosis so this led to a parade of specialists evaluating Rose during our stay in the hospital. We were hopeful in the beginning that it was just Hypotonia and I remember being really scared that she would never walk and talking to Arden about her possibly needing a wheelchair. This time period was terrifying. I fell into the google hole of the 600-1000 reasons why someone can have hypotonia. They got some labs - they came back fine First we had a brain ultrasound - clear OT - Hypotonia She had an xray ENT - they came and cut the tongue tie (we had to push for this as the NICU usually doesn't do it) but I wanted to see if it would help with feeding - it did but only marginally. Rose failed her heart screening....so cardiac specialists from Children's came over and said she was fine. Genetics came and examined her throughly. They ordered tests (a microarray, prader willi and angelmans syndrome) I had her get another xray Vision - came and examined her eyes - said that structurally they were good Genetics came back to look at her vagina to see if it looked normal (three ppl...I was pissed) We had a swallow study due to the poor feeding - she wasn't aspirating but wasn't completely normal Neurology came and examined her - They ordered an MRI due to her eyes not going completely outward. That had been noticed prior which is why the vision ppl came Hearing - passed on both ears
I really liked the OT in the NICU but we were only able to see her a couple of times. She told us that her son also had hypotonia (of course, right since I am in this field) and how well he is doing now. A story about how they argued in their house about him playing soccer but how important it was for her husband so he plays soccer, albeit perhaps the worst player on the team (Arden and I just held onto that he could play- it meant so much to us)
After we got a diagnosis and knew why she was struggling so much to eat - we made plans to come home. All they had been doing was monitoring her vitals and assisting with feeding in the NICU which we could learn to do from home. We had been asking about learning to handle the NG tube and had already started practicing. We had a session with the tube supply company and they quickly reviewed the machine and supplies and gave us a packet. One benefit of this situation is that formula would be paid for by insurance - which is nice. We practiced on a doll and the NG tube got stuck alot going down which didn't help my confidence in doing it to my actual baby. Arden was much more confident with the whole process. We both had to place the NG tube in Rose before we got discharged. I remember getting a call early in the AM from the nurse who said she pulled it out and I was hoping you could run in to do it (otherwise we would need to remove a good tube and this isn't a pleasant process for Rose). We ran to the hospital and I stayed in the car so that it wouldn't count as our visit of the day as we had someone bringing us lunch and couldn't stay. I placed her NG tube right after getting her diagnosis. It had been the plan to do it that day and the nurse we liked was there and wasn't going to be there again before we got discharged. I remember her saying how about we don't do it. I remember how solid my body felt and the grit in my mind. I firmly believe you can handle anything - it is the unknown that is the most difficult. I put it in quickly - it was perfect. I haven't yet done it again. My husband does it everytime while I hold her down. I find it traumatic to do to her.