NICU Diaries: Week 4

I’m putting updates here as we progress in the hospital.

Read about last week: Week 3.

Check out more weeks from our NICU journey here.

Day 22: Snuggles

Something silly I realized- time is different in the NICU. I count it as Day 22 because the day he was born is to me the first day, but his age is only 21 days old. While I’m writing this in Week 4, he’s actually only 3 weeks old and reaches 4 weeks when the week is complete.

Anyways! This is what my very satisfied happy boy looked like after we did 1.5 hours of skin-to-skin snuggles and I read to him from Wonder.

He was a bit high in potassium but all the rest of his labs came back with no concerns. It’s Rest and Grow time for Henry! The Nurse Practitioner said we’ll plan to wean him from the CPAP to Hi-flow on Sunday when he turns 32 weeks. I’m looking forward to seeing more of his face then.

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Day 23: Daytime Bath

I had the best day with Henry!! Our nurse Katelin said he was doing so well today that we could do his bath while I was here (since I can’t come back at night) and then I could hold him when he’s all clean and fresh! Our respiratory therapist Kelsey said we could take all the stuff off his face for pictures!

He didn’t grunt at all this time and was super happy and calm.

Here he is after we dried him up a bit and he was so dang cute! His skin is too sensitive to have lotion. They put a special powder on his skin folds to prevent yeast and sores. We enjoyed skin-to-skin snuggles before I had to go. Nurse Katelin sent me off with a bag full of hand prints, foot prints, and the little heart shaped leads that they put on him during Cares. I can’t wait to show the kids! She made enough for each of them to have their own copy, and wrote “I love you!! Love, Henry” on it ❤️

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Day 24: Raging

I held this angel in a 2.5 hour Kangaroo Care session. The nurses said he was “raging” a half hour prior, and very vocal about his opinions, so they had to do his Cares without me.

Dr said Henry is acting so big for his age (sucking on his paci, opening his eyes, having so much activity) she sometimes forgets he’s only 31 weeks. But Baby is still very young; he has brady’d a couple of times recently which is normal for his age, so we’re just watching him. Bradycardia (“brady”) is a low heart rate often linked with not breathing, and common for premature nervous systems. He self-recovers pretty well from these de-sat episodes. 1545g tonight = 3lbs 4oz.

I’m struggling today. I haven’t made an appointment with a therapist yet. I cried a lot after I went home: seeing the baby blanket in his empty bassinet, feeling so tired not being able to think straight, realizing Jer was going to be home late from Parent Teacher Conferences, dragging myself out of a fog to pump and clean parts, not wanting to face my kids because I don’t want to answer “What’s wrong?” or “Why are you crying, Mom?”… I want to protect them from the hard moments a little longer and be strong for them, but I feel like I’m being crushed.

I met another NICU Mom today at the hospital who has been here for 57 days, and will likely go home soon. That Mom called me with wonder a “Long term” because our journey will likely be longer than that, but it zoomed out from the “One Day at a Time” mantra that’s kept me going. I got home and thought, How can I do this for so long when I am barely making it through another hour? I want to give up and lay down and sleep for days, and wake up to this all just being a fever dream. But mostly I think maybe I’ll be able to deal better when I get some sleep.

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Day 25: Baby Cam

The camera is back on!!! We can see Baby in real time while I’m pumping, thinking of him, and wanting to feel close to him.

I pumped at the bedside before/after 2 hours of glorious skin-to-skin. It took 3 diapers at Cares when he got his glycerin shot in the bum because he just kept pooping! We were blessed with nurses and a Respiratory Therapist Paul we already know and love. He is so fun from our hometown in California; his Mom made our wedding cake!

Things got better yesterday after Jer got home; we held hands and talked and laughed. The kids told me all their tales from school, I ate surrounded by their energy, I washed some dishes, then read Narnia to the kids before bed. I told them we’re doing School Lunch since Mom needs a break.

I tried to take care of myself today- put on actual clothes instead of pjs, arranged my hair, ate cafeteria meals since I didn’t have time to cook for myself, listened to an audiobook while holding Baby, took a walk by the duck pond, found a lone bench away from everything to sit with my thoughts, listened to 90s music that felt good… Still weepy today but at least I’m out and about, and made the bed. Having that camera access to Henry is really helping me mentally.

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Day 26: One Less Tube

In preparation for his weaning from the CPAP machine in a couple of days, Baby is also weaning one of his OG (orogastric) tubes in his mouth. With the CPAP machine, air gets pushed into his lungs but also his stomach- so one of the OG tubes is used for venting to let that air out, and the other is used for feeding. Once the CPAP is gone, he won’t need that extra venting tube. Today they removed it, so the remaining tube will share both functions of feeding and venting.

During feeding, the alarms kept sounding on his monitor as his oxygen, heart rate, and respiratory rate went all over the place even during skin-to-skin. Our nurse Kiah helped to manually vent him and give him some help towards the end of his feeding. He will have extra support during the transition.

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Day 27: Dad’s First Time Holding

Our 16th Wedding Anniversary was yesterday. We celebrated with dinner and relaxing. Jer says that my gift to him was today when he got to hold our baby for the first time and rest his hand on baby’s back to feel all of his tiny movements.

They were very content together, and any time I tried to make adjustments to make them more comfortable our baby happened to de-sat. After 3 times I gave up on making any changes and figured to let them alone. Jer will probably tell everyone about it and how Baby liked Dad’s “settings” more haha.

Baby Henry is a little swollen; could be from not enough sodium, not enough circulation in his lower extremities, being tilted with the head higher and very little movement. Dr had Jer do bicycle legs for Baby to help. He’s 3lbs 11oz tonight, but we expect it to drop once he goes off CPAP since some of that is the equipment and edema (fluid retention).

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Day 28: Breathe Easy

Baby is 32 weeks today! He traded his CPAP machine for a hi-flow device, so it’s more comfortable for him and we get to see more of his sweet face! There is still swelling but an ultrasound determined no hernia, so the Dr said not to worry. As of today his feedings are condensed from 60 down to 45 minutes.

I got to snuggle with him skin-to-skin and rest my cheek on his beautiful little head ❤️❤️❤️ He likes to use his arms as pillows and it’s so cute! Nurse Sarah said he’s now 37.5cm = almost 15in long, such a big boy!

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Read about next week: Week 5!

Check out more weeks from our NICU journey here.