NICU Diaries: Week 16
Baby is 43 weeks corrected gestational age.
Read about last week: Week 15!
Day 106: Decided
I love my Baby. He fell asleep on me skin to skin after he took a full bottle from Nurse Katelin. His little restlessness subsided while I swayed with him and sang random songs- Hootie and the Blowfish, Fleetwood Mac, and a lullaby my Grandmother always sang to us. We breastfed in the afternoon and it was so hard to leave. Yesterday the medical staff said he’s not happy unless he’s being held and cuddled 24/7, and I honestly didn’t see what was wrong with that if I had him home. That’s when I felt inside that it’s time to be out of here.
I found myself at the hospital chapel, and in the quiet I saw a jar of prayers where you could leave your burdens or your joys for a Higher Power to receive. I wrote the gratitude I have in my heart on a piece of paper and left it there:
I got to hold my baby.
My baby calms at my touch and stills at my voice.
Someday my baby and I will rock in a chair at home.
Someday baby will be home.
Day 107
Baby is so strong! Nurse Katelin showed me how well he holds himself up on the boppy pillow doing tummy time. We breastfed in the morning, and I held him after he was bottle fed at lunch. He didn’t want me to put him down, but I wrapped him up nicely and gave him a few pats so that I could pump next to him.
I had several meetings at the bedside today. The lactation team, social worker, dietician, and provider all talked with me about moving forward with a plan for Baby going home on an NG (nasogastric) tube, as well as Early Intervention to have professional support in Henry’s development.
Made many phone calls, too. My breast pump rental expired after 90 days, so I got an extension. I confirmed the feeding pump order and watched videos on how to operate the machine and prepare the milk bags. I called our family doctor’s office to check if he’d be comfortable serving as Henry’s pediatrician with all the “after the NICU” needs for weaning the feeding tube and breathing meds, tracking his growth with adjusted developmental milestones, and working with the feeding clinic, neurologist, and cardiologist for his other follow ups. Doctor visits nearby with our doctor who already sees the rest of our family would be ideal!
At home I assembled the stroller, then tried it out with the car seat and adapter. It’s such a fancy stroller and pushes so smoothly! Can’t wait to bring baby home in it and take Baby on walks!
Tonight he weighed 3804g, about 8lbs 6oz. Went up on feeding volume to 66mL every time we feed him.
Day 108: NG Tube Training
I placed my first NG tube. In order for Baby to go home with feeding tubes, Caregivers need to pass off placing it twice. Nurse Vee got me set up with all the supplies, swaddled him tight, and helped me measure and get it inserted. I replaced the one he ripped out of his nose. Got it on my first try! Poor baby sad-cried and had boogers we removed, so I snuggled him after. He got 40+ ml from a bottle at lunch.
The hospital has switched to using Size 2 diapers for Henry even though he’s still smaller than the suggested weight range. I freaked out for a second because we have all Size 1 diapers at home and I thought I needed to return them.
We have 2 options for what to do at night with Henry for the tube feedings. There are pros and cons. With a continuous feed we would all be able to sleep, but he would not have as much practice with oral feedings so it might delay his weaning from the feeding tube. We could do longer stretches of fewer feedings at night and just get up once to feed him and gavage the rest. We decided on the 7 feedings instead of 8, but the total volume remains the same so he’d be gavaged more at night.
Day 109
Henry randomly smiled at me all morning. He smelled so nice and clean from his bath last night. I loved snuggling him. We breastfed, bottle fed (50mL and there was 70mL in the bottle!), and had many diaper changes as this boy is a pooing machine and does not tolerate a dirty bum.
Jer and I were supposed to visit Baby together, but Jer felt like he was getting sick last night. We had plans to train on the NG tube stuff today. I need a backup to be able to work with the feeding tube instead of just me. If Jer is sick that doesn’t affect Baby’s discharge date; they said to just isolate Jer with a face mask at home 😔. I think L can learn about placing the NG tube, but she can’t be one of the people to pass it off since she’s not an adult. The hospital is still trying to get back to me on that.
Looks like we are still working towards discharge on Monday. I haven’t been telling anyone because I don’t want to jinx it. I’ve become quite the superstitious realist through this long journey—don’t get attached to any ideal outcomes. I appreciate Charge Nurse Trudy for saying that when he’s home he will do so well and we won’t be on feeds for too long. She’s so encouraging and kind- it helped me to buckle up and accept what I have to do.
Even so, we are progressing on our discharge goals checklist. Nurse Coldir said to bring the car seat in the next couple of days so baby can do his Car Seat Test! Dr sent Henry’s prescriptions; only one of them was available at our pharmacy and the rest I will need to get over the counter elsewhere. His kidney test results seem OK; they might have us follow up with a renal clinic or urologist later. Henry also had a hearing test today. He failed one of the parts, but might have been from being fussy. The tester said we’d be referred to outpatient and need to do a follow up appointment, but I asked them to come back and redo it if possible; that could save me time if we don’t actually need to do another follow up visit somewhere.
I bought a monitor called an Owlet to track Baby’s heart rate and oxygen levels at home using pulse oximeter technology. While he’s on the feeding tube, we want peace of mind that Henry doesn’t aspirate in the night.
The 3-tiered rack came today! I’ll have a spot for all his medical supplies and be able to use the dresser top as a sanitized area for preparing his feeds that go into the tube. I have a plan for where to move around all the furniture in our room and living room. I hope this all works and we get it done before Baby gets here!
Day 110
The zinc tablets and rest worked for Jer and he feels so much better! No symptoms so we went to the hospital together. I breastfed Baby 2 cares in a row, and had a good amount of milk pumping. Heavenly Father is helping me stay fueled and a good supply without needing the lactation supplements.
Jer passed off his first NG tube placement with Nurse Lauren. She had him actually measure with a ruler instead of just using the numbers on the tube. He said no kidding it’s definitely a two-person job!
Discharge training was kind of a challenge in our crowded room. We have the Play mat stuff, swing bouncer, Snoo bed, test weight scale, breast pump, feeding tube pump and equipment that got delivered, trash cans for all the isolation supplies, car seat, and all the chairs for us and the guest taking up floor space. We had visits from Occupational Therapy about Baby’s bottle feeding, Lactation on breastfeeding, and the Dietician showed us a hands on demonstration on operating the feeding tube pump. It has a backpack to carry around when traveling, and an IV pole when at home. We need to mix the milk using a recipe, wash and prime the milk bags after each use, and grab a new milk bag every 24hrs. We have an outpatient appointment scheduled with the feeding clinic 2 weeks after discharge.
We rearranged the house so that our bedroom can hold the nursery. The desk went into the main living room. I really like how it turned out. Jeremy did a great job and Lily helped us out a lot. They even hung up the baby mobile for me! I’m trying to set it up so that Cares at home go smoothly. My very comfortable Glider chair is in the corner. The kids had a great time trying out my chair reading the new book called Wonky Donkey that Nurse Vee gifted Henry. I laughed so hard that I cried a stream of tears as read it to the tune of “I want a hippopotamus for Christmas”, and Fletcher was his hype man.
We are getting closer to having Baby home!! I feel a little more prepared. It feels like a home version of his hospital room, but with a big bed in the middle haha.
Day 111
While pumping at 3am I saw Baby from the livestream camera, chilling in his car seat taking the test. He passed! Also retook his hearing test and passed! We are still working towards discharge on Monday. I got stopped by the Respiratory Therapists who have been there with us since the beginning, and we got so emotional with how happy we are at how far Henry has come and that he is going home soon. Reggie even took a shift on Monday so he could see us off!
I set up the IV pole, milk bag, tubing, and feeding tube pump to gavage Henry from it for the first time. Since we are NOT doing continuous feeds and are just doing longer Bolus feedings, the Charge Nurse said we could do our “Rooming In” at the bedside in the daytime and split it up so that we don’t have to do an exhausting 12-hour stay overnight. I did 6 hours today with help from Jer, and we will complete the final 6 hours tomorrow.
During our “Rooming In” today we went through the process of feeding Baby, gavaging, pumping, and cleaning everything to do it again. Nurse Lauren was an amazing teacher and very patient and supportive of us. She showed us how to make the milk mix with the breast milk, formula, and benaprotein fortifier; it took over 10 minutes of twisting and waving the bottle (definitely not shaking) to get it mixed properly.
Baby fell asleep so well snuggling on at our night Care, his heart rate was 131. However, he woke up so hungry that while Jer bottled him he ate too quickly and threw up, but then he finished the entire bottle of 70mL! I think that’s the most he’s ever done.
We didn’t get to pass off our 2nd NG tube placements, so we will do one as soon as we get in tomorrow and then the last one on our way out. The home healthcare store is rumored to be stingy with the feeding tube supplies so the Nurses are being so kind sending us home with a little extra.
Day 112: Rooming In
Happy 44 weeks to my Baby Henry!
Today he was dressed in a yellow footie pajama that made him look like a big boy. We breastfed, finished passing off our last NG tube placements, and got more practice with gavaging using the home feeding tube pump. Baby was a champ today and drank 60 mL for Jeremy! All his caregivers and providers say he is ready.
Tomorrow we’ll make doctor and specialist appointments, and stock up on supplies. Nurse Coldir helped me start a schedule of care so I remember when to give Baby his medicines and food, and get into a routine.
We’ve been preparing the baby area in our shared Master Bedroom. The room felt like it needed a splash of color to ground it, and liked the idea of diffused light from the window so I ordered curtains. That seemed more doable than painting, expensive murals, or cluttering the walls. My only other addition would be acrylic floating shelves for books, and a plant. I can’t wait to share the space when it’s ready! We don’t plan on going to any public places for the next few months. Our doctor warned us that the measles is going around, and that these little ones are not able to be immunized against it. A nice comfortable room where some of that outside and nature would make a difference for us in the isolation.
We are SO excited to take Baby home tomorrow!!! I can hardly believe it!
Check out more weeks from our NICU journey here.
