NICU Diaries: Week 15
Baby is 42 weeks corrected gestational age.
Read about last week: Week 14!
Day 99: Tough Season
He was too sleepy and tired to do well breastfeeding today, already upset from taking his medicine… Yesterday was the best case scenarios for breastfeeding, and today were the obstacles. That was frustrating because I worked hard to be prepared, get the kids ready, pump in time, and drive there to give him the best chance at our one and only feeding session I can be there for. It’s Early Out today when I pick up the boys, so I’m at the hospital only while they’re in school. It’s so much effort for a very little window and low success rate. I wish I didn’t try so hard, that I could change my mindset and just be here for whatever pace he’s setting, but I feel like I want him to go home, what can we do to get him home, how can we do more for him?
The doctor had a long talk with me. All the providers will consult about Henry in their Monday meeting. Prior to today, Henry did 64% of his feedings in the last 24hrs so he’s getting close but not there yet.
Doctors will discuss trying out On Request feeding, meaning he’s fed just what he takes orally (nothing gavaged unless he’s doing very poorly and they feel they need to intervene/re-evaluate) for 12-24hrs to see what he does when he goes rogue without a schedule or feeding minimums. Dr asked me to see if I can try to be here for 12hrs straight so that I can do multiple feeding sessions in a row and give Henry that continuity of care; they can let me use the Sleep Room if I do this at night. Ideally I’d do the 12hrs in tandem with the On Request so that I see for myself what he can do, and can have a better idea of whether we want to continue in hospital, or go home with a feeding tube. There would be training, an overnight test, a plan from the feeding team, follow ups with a clinic and pediatrician to wean, and even a more permanent belly feeding tube option if he becomes more dependent long term. Not saying he needs that but just possibilities.
I’m burning out and getting discouraged at this start of Christmas season. I can’t believe it’s now December and we’ve been here since August through literally 3 seasons. Now I’m fighting the increased traffic from shoppers, icy roads and inclement weather, cold and RSV season, a decline in my already dwindling energy and hope, and strain in our time and finances… the challenges are just growing, and I’m here to say I know this is just a phase but wow it’s not fun. It’s hard. I try to be brave every day, but then it comes out in unguarded moments crying for no reason while clutching my baby as I’m putting him back or in front of strangers at the elevator. I wish I could feel okay with giving up and just go home and not think about my hospital life, but I’m dreaming I’m holding him at the hospital when I’m at home- and I’m dreaming I’m doing laundry or washing pumping parts in my bathroom sink when I fall asleep at the hospital. It’s jarring waking up unsure of where I am and realizing I still need to do that laundry or go to the hospital to visit because that didn’t actually happen. I think I’m going crazy and some sleep will fix this.
The bright spot in my day was holding Henry wrapped in a blanket emerged in a tub of warm water as he received a gentle massage in hydrotherapy. He had a peaceful restful look on his beautiful face and his arms were so loose and free, even his therapist commented on how much his range in motion is increasing and the tension in his little body is leaving. He looked so calm and happy.
Day 100
Day 101
Day 102
Day 103
Day 104
Day 105
Check out more weeks from our NICU journey here.
