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 limited time 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 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. For the 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 resources… the challenges are just growing, and while I know this is just a phase—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: Swallow Evaluation
Henry has now spent more time in the hospital than our 3 other preemies combined. Now over 8lbs, he grows cuter by the day! I call him “my little Raptor” from all his noises. His job is to eat/grow well, and today he took his first full feeding by bottle- great job! In his spare time he likes to rip out his feeding tube, be out of bed holding his head up to see what’s up, and getting squished by snuggles. He enjoys my kisses on his head even with my mask this RSV season. If I just held him for 12hrs I think he’d call that a good day. “I’ll be home for Christmas” means so much right now. Please keep the prayers coming, they are powerful.
It’s been an emotional rollercoaster today. I slept through all my alarms and rushed to the hospital 15mins late with a protein bar and probably looked like a crazed zombie. I’m thankful that starting today our kindhearted friends and neighbors are helping me with the boys’ school drop off and pick up so I can be at the hospital for longer and less hurried. “Can I take that off your plate?” It was an answer to my prayers and a relief to this tired Mama. I’m still learning how to ask for and accept help, and realizing when I’ve reached my limit before I burn out.
The only thing keeping us in the hospital is Baby does not eat enough orally, so they have to feed him through his tube in order for him to continue to grow. At 3 PM the therapy team did a swallow evaluation by feeding Baby thickened milk. They are looking to see if he is having certain feeding problems like he’s afraid it’s choking him or maybe the milk is coming out too fast.
He did so much better on the bottle today than breastfeeding where I could feel him work but nothing came out. Before I left the hospital I was considering giving up on my pursuit of breastfeeding, while preparing to stay at the hospital with him for 12hrs for On Request scheduled tomorrow. The swallow eval results changed everything. He drank the whole thickened bottle and was happy. He’s never finished a bottle before, so that was BIG. Usually he has problems with coughing up, throwing up, gas, etc that leave him super tired and still hungry. On Request is cancelled. They will feed him that thickened milk 2x/shift until Friday when they will do a Swallow Study.
For the Swallow Study, they bring him downstairs and use x-rays to see how the milk is actually going down his throat. There are babies who aspirate (accidentally inhale into lungs) but show no signs like the noises or choking, so that test will help rule out those feeding issues.
If he can take all his feeds orally through a bottle or breast for at least 2 days he might be getting ready to go home. I’m trying not to get my hopes up in case we have challenges.
A couple of red spots showed up on his legs and chest, so Nurse Vee is watching them.
Day 101: Viruses
The therapy team worked with me on how to feed him the thickened milk in a bottle. Until the Swallow Study results on Friday we are holding off on breastfeeding. He charmed a Cuddler who held him either yesterday or last night and she basically couldn’t get enough of how cute he was. We also did Play Therapy today with toys and high contrast pictures. OT says he can only see about 8-10 inches ahead so we’ve got to work on tracking the moving objects.
A couple of red spots showed up on his leg and body yesterday. We hoped it was just baby acne but were watching it, and Nurse Vee said it’s exponentially worse today and definitely a rash. There are lesions on his hands, arms, legs, and feet. We suspect in his throat as well from his discomfort at swallowing.
After a viral panel we found out Henry is fighting 2 viruses (rhinovirus and enterovirus), and Hand-Foot-and-Mouth. We are in isolation at the NICU. I held him for hours today so he could get better sleep and try to keep some food down. No wonder he’s had such a hard time eating and violently throwing up the last few days. I’m all over the place emotionally. Just yesterday we were making plans on how to go home next week. We have been so careful and so has the NICU. It could have come from anything. Sometimes we are just lucky I guess. I pray that Angels watch over Henry and that this sickness goes quickly.
I ate my feelings and thought and cried on my walk in the garden. Tomato soup with grilled cheese was just the warm comfort I needed. I feel like a child wanting to have a tantrum about how it’s not fair and it’s too hard. I have been pouring my heart out to God and pondering at how even in the thick of it I feel Him holding me up. We have to survive this setback. This is one of my favorite scriptures about my Savior.
But behold, the Lord hath redeemed my soul[…]; I have beheld his glory, and I am encircled about eternally in the arms of his love.
2 Nephi 1:15
Day 102: Festive Recovery
Henry is doing so much better- all those prayers are helping. His rash is lightening and slowly he’s able to take more food. He was more comfortable today after taking Tylenol, able to keep his food down, and snuggled every chance he could. He likes my singing and patting him, and just falling asleep on me. He now gets fussy while I pump so that I will hold his hand or show up at his bedside.
Nurse Vee said that he’s getting several new bottles (I’m guessing it has to do with no cross-contamination while we’re in isolation), so I will probably return the bottles I just bought.
I brought a swaddle and hat for him from home and Nurse Vee and I had so much fun dressing him up Festive! He is so expressive and I couldn’t help taking a bunch of pictures 😍😍😍
My sister met me for lunch and we had a good time splitting food and catching up, and now we have plans to watch some classic RomComs together.
Our friends and neighbors have showered us with love delivering meals, saying prayers in our behalf, and reaching out with messages. It fills my heart and strengthens me.
Nurse Kayleigh said he took 37mL at his night feeding. Tomorrow he has a Swallow Study scheduled where they will watch his ability to take milk and identify any swallowing problems. I plan to be there for that.
Day 103: Cue Based Feeding
Swallow study today for Henry is canceled. These plans might change but they want to trial giving him thin milk in the bottles because he might have done less before while he was getting sick. It’s a lot of work for him to drink the thick milk and also a lot of work for families to go home on thickener so they want to see if he can build his stamina on the thin, and see how he does today.
We had a team of 2 nurses today, a very experienced nurse and a brand new inexperienced nurse. Normally that’s not an issue, but the inexperienced nurse was our main one and I did not like it. At this stage in the game, I can’t let my child have setbacks for the sake of someone’s training. His nurse directly impacts Henry’s progress. He may be older, but he’s sick and very particular in his care so it’s not like you can just relegate us to having trainees in charge. An experienced nurse knows the stress signs in Baby and will provide positive feeding experiences with him so that he eats well. An experienced nurse will make the breastfeeding process smoother with the stressful parts like test weights and getting organized. An experienced nurse is reliable, trusts the mother’s intuition, and communicates well. An experienced nurse supports you and gives you confidence.
Now that we’re on thin milk I can try breastfeeding again. It was a rough time clashing with the new nurse, trying to get positioned with 3 other people poking and rearranging and trying to sneak in milk droplets. There was too much going on it was stressing Baby and I, and I had to just call a time out and try our own ways. Lactation and our nurses recommended we release the pressure and stress of doing test weights while Henry is recovering, that we just breastfeed for comfort and closeness. We had our first skin to skin time in a while ❤️
We switched to Cue Based feeding. It usually requires experienced nurses and Primaries who he trusts and who know him. He has Nurse Annie tonight one of our favorites, and he already ate all his bottle except 10mL! She said she wouldn’t even know he was sick from how he looks and how he’s acting. No one can find his rash anymore. The providers said that’s a good sign! He’s breathing well on room air, no congestion. These are like the best possible outcomes for what he’s sick with. It feels like all of those prayers for Henry are being answered.
Day 104: You Snoo, You Snooze
It’s Saturday and I got up too late to do light therapy, it rained for a majority of the day, and I didn’t have enough energy to drive even though I wanted to see Baby. I was so tired I basically slept all day except to eat/drink, shower, pump, go to the bathroom, and read in bed. Henry’s doctor said my body must be trying to help me not get sick, so I should rest.
Thankfully Nurse Vee was with him today. She called me with updates. Baby had Tylenol this morning as needed. There’s a new thing in his room, a Snoo (??) bed that responds by rocking him when he’s fussy. At first he wasn’t sure about it, but he’s grown accustomed to it. She held him for 1.5 hours “and loved every minute of it!” He has some new favorite books: Big Bear Little Bear, and Giraffes Can’t Dance. I’m so glad our nurse treats him so well! ❤️❤️ While the doctor was assessing him, Baby kept his eyes on Nurse Vee the whole time even though she didn’t say anything or draw his attention. They’ve become good friends. He’s taken about 36% of his feeds in the last 24hrs.
His night nurse Annie said he was a sleepy boy for her, but has been taking up to half of his feeds. His hair was extra fluffy at bath time, and he’s been loving life a little more than usual—probably from that Snoo bed that puts him right back to sleep. If Annie wraps him in the bigger tougher blanket like a little burrito he is out like a light haha. I can’t wait to see and hold him tomorrow!
Day 105
Jer and I visited Baby after church. This was Jer’s first time seeing and holding him since Henry got sick and was put in isolation. Doctor got our thoughts on gabapentin again and possibility of going home with an NG tube. I’m getting less resistant to the idea of doing all the home care procedures and extra work in preparing feeds, going to clinics and appointments, etc if it means progressing towards full oral feeds at home. I don’t know how trying to do it myself at home is going to affect my chances at breastfeeding. I’ll still be needing to pump, too. It feels a little overwhelming thinking of all that needs to be done, so I’m glad we don’t have to make a decision today and the providers will all discuss Henry tomorrow.
Read about next week: Week 16!
Check out more weeks from our NICU journey here.
