NICU Diaries: Week 9
Baby is 36 weeks corrected gestational age.
Read about last week: Week 8!
Day 57: A Big Boy
Jer visited Baby Henry early this morning for skin-to-skin snuggles. He’s breathing well on his 2nd day off of CPAP. Baby likes to sleep with his arms underneath him. He wanted to be held upright. Last night he had some spitting up and throwing up, so maybe being upright helps. Baby smiles regularly now, and it always warms my heart!
I visited late afternoon, and when I walked in Henry was getting a foot massage and loving life with his Nurse Ashley being his “personal binky holder 24/7”! His therapist Sydney recommended hydrotherapy for him once his head wound heals, or some time before he leaves here— I agree he would love it combining 2 of his favorite things- baths and massages!
Baby was wide awake for over an hour, looking around and doing push ups. 🥰 He is so strong! Nurse Ashley asked him, “Do you even know you’re a baby?? You’re acting like you’re a toddler, such a Big Boy! You’re supposed to be sleeping.” That’s him though, always ahead of his time and trying to grow up so fast.
I think he got too hot on me even uncovered because when I moved him to my arms he was able to fall asleep. He smelled sweet and made me sticky, I found out it was from the Wound Care team changing his treatment to a special honey, which has antibacterial properties and is gentle for sensitive skin.
Nurse Ashley who has had him for the last recent days says she has enjoyed getting to know him- he is so cute and fun, so vocal and likes to share his opinions which is good, likes to be on his tummy and to sleep as high up as he can. I thought he looked like a little king on his throne.
After having a rough day, I am SO happy after seeing my baby ❤️❤️❤️
Day 58: Goober
Look at this little goober and the many faces he makes! My favorite picture of baby from today is of his smiling eyes and smiling face. I got a look at his head wound when they changed his bandages and it’s looking so much better. He’ll probably have a bald spot there for a while.
Day 59: Donald
Baby weaned to level 5 on his Hi-flow breathing machine! He’s 5lbs 8oz now, and sounds like Donald Duck when he complains 😆
Day 60: Feeding Tube Frenzy
By the time I arrived, Henry had ripped his feeding tube AND the tape that keeps it on his face 6 times. I picked him up unsupervised for the first time ever, and he calmed immediately. By the end of my visit his tube had to be put back in his mouth for the 9th time. He just pushes it out by bearing down and moving it with his tongue.
His nurse (new to both of us) seemed stretched to her limit; a lot of little things were left undone or chaotically thrown together. She was trying, but I could feel her exasperation with my baby always needing her attention, and it felt like she’d rather not work with us.
You would have never known he had a bath last night, his bed was covered in spit up. The venting tube that holds his regurgitated stomach fluid spilled several times on me from being hurried, where other nurses have been so careful. There were so many messes that the Respiratory Therapist commented on how gross our bedside smelled like tomato soup! I had to talk with the Technicians to request that his bed get wiped down or changed before the normal day because it was so dirty.
During Cares when I was pumping and couldn’t help her, the Nurse used the same gloved hands that changed his dirty diaper to push his feeding tube back in his mouth again without changing gloves! The gloves moved from bum to face without thinking. She absentmindedly put a very dirty burp cloth that had been wiping the floor into his crib with him! The sanitary concerns bothered me so much because the Nurses in this unit are usually very careful especially since Baby has just gotten over an infection. She probably didn’t even realize she did these things. I think both of us were relieved when Henry’s neighbors moved to another part of the NICU and our nurse went with them, turning his care over to someone else.
I talked to the Charge Nurse about my sanitary concerns and that I’d rather not leave him in today’s Nurse’s care again. The CN reassured me that my #1 priority is my baby’s health and safety rather than hurting someone’s feelings, and that regardless the Nurses should never be doing what she was doing with my baby. This is the first time I had to advocate for Baby’s care, and it took a lot out of me because I overthink having these difficult discussions.
Day 61: At Ease
He seems SO much happier today. Nurse Ella who has been with us a lot in Nursery B came back, and both Baby and I were so comfortable with her. I felt at ease and like I could ask for help, including needing to go to the bathroom again while holding Baby.
He didn’t pull his tube at all. Nurse Ella said the Nurse from yesterday actually came over to check how many times Baby had pulled his tube out today expecting it to be high, and was surprised he’s calm and happy. Maybe he was all tuckered out from fighting all day yesterday.
Baby’s wound is getting smaller and looking way better! There’s hope yet that his hair may grow back in that spot haha. Nurse Ella said Baby always sleeps really well after I come do skin to skin with him ❤️ And that he likes to be “Boss”, doesn’t like being restrained or forced into anything. Sounds like my boy!
Day 62: Lullaby
Baby has been out of the womb for 2 months today! He rips his OG tube out at least once a shift still. Last night he was weaned to level 4 on his Hi-flow breathing machine—progress! He’s gone up in feeding volume so it’s nice that the nurses are accepting my fresh milk again so I don’t have to store and freeze as much of it now, and it can go directly to Baby’s milkshakes.
I have been missing him so much. It’s been so fun to see the many faces he makes, and find the best holding positions for him while we rest together. I sang some of my favorite lullabies and folk songs to him today: Birds and Boats by Gregory and the Hawk, Landslide by Fleetwood Mac, To Make You Feel My Love (Mick McAuley version), Wings of Time by Tame Impala. Also read to him from my book because I heard it was good for him. My favorite thing is kissing his head and holding his hand. I fight the urge to squeeze him so tight.
Day 63
Happy 37 weeks (gestational corrected) today! He is now 5lbs 10oz, growing so much! Here is our baby on elbows with hands by ears looking ready for a newborn photo shoot. I wish I had a pic from my perspective but he looked so peaceful and sweet!
Weaning him from off the diuretics and extra nutrients like folic acid and potassium since his swelling has improved. If he does well they can wean his Hi-flow down to level 3 as soon as tomorrow.
Read about next week: Week 10!
Check out more weeks from our NICU journey here.
