NICU Diaries: Week 12
Baby is 39 weeks corrected gestational age.
Read about last week: Week 11!
Day 78: Masked Up
Walker is at the tail end of a phlegmy cough since Thursday, so I stayed home with him and waited to visit baby tonight after a shower and masking. Walker and I went on a dog walk, had lunch together, and he showed me all his Lego creations.
The hospital told me that Henry got a bottle evaluation at the session before I would visit. The occupational therapist thinks it’s worth seeing where he’s at with that and one time shouldn’t confuse him with bottle and breast. During the evaluation he was fussy and had a hard time, but he did well with sucking on milk drops that they put on a pacifier. We will be working on skin to skin and just creating positive experiences.
They decreased his calories added from 28 cal to 24 cal, and also added a little bit of the full term formula powder to my milk. Other than being intermittently irritable, he was doing well.
He was so tired (probably from the evaluation earlier). I held him skin-to-skin the whole time I was able to at the hospital and yet it didn’t feel long enough. His vitals were the most relaxed I’ve ever seen him, with heart rate in the 130s and respiratory rate in the targeted 30-60 range ideal for feeding down the road.
He has his first hydrotherapy session tomorrow, so that his little bum can feel nice in the water and he can strengthen some of his muscles. I’m really looking forward to seeing him so happy during it.
Day 79: Hydrotherapy
Our neighbors picked up the boys for me today, so I was able to stay at the hospital longer. Henry will have hydrotherapy Tuesdays and Thursdays so that he gets relaxation and stretching at least twice a week. I chose to observe for today, and next time I’ll participate. The Occupational Therapists introduced him to the water slowly in a swaying motion that was calming for him, and exercised his legs in the water for as long as he would tolerate (about 10 minutes). As he does it more often he could build up to longer, but we just want to make sure we don’t push him because it needs to be a positive experience.
Nurse Britney opened all the windows and it really brightened the room! We have “the suite” or as some nurses call it “the penthouse” with the lovely view, “the best room in the house”. What an honor, it’s such a blessing that if we’re going to be here for a long time it will be in such a nice room.
Lactation helped me try breastfeeding, so it was by his lips and just waiting for him to decide he’s hungry enough to try, but he didn’t root. We tried some ways of waking him to see if he’d be more active, but he was tired from his spa day. After 30 minutes we put him skin to skin on me, and Rachel from lactation said he was calm and relaxed and happy and it will build trust, so this was good. It’s just taking time.
Day 80: Another Day
I don’t feel like Baby and I had enough time together, I miss him so much.
Today’s visit was brief, and we tried a positive experience at the breast overseen by lactation, where after several attempts he latched for a little while just holding the nipple in his mouth. This lactation specialist pushed him more than our first consultant did, and there were times I had to stop and calm Baby first because he was fighting and crying and getting worked up. I wish the direction was more consistent. It felt like I had more time listening to her explaining about why these things can be confusing rather than actual solutions. Baby and I happily snuggled skin to skin after I pumped.
Nancy the social worker checked on me, and recommended that Jer and I go on a date (even one that doesn’t include the hospital) to break up all the not-fun things. I thought that was a great idea to make time for fun and connection with my sweetheart.
The other day Nurse Kristie said figuring out the Feeding can be the most frustrating time at the NICU, but eventually we will be out of here. I wonder if I need to be here more to give Baby more opportunities instead of the once-a-day that my schedule allows right now. Today was the first time in weeks that I allowed myself some tears when saying goodbye to him. It’s wearing me down, another day going home without him. Most days I don’t let myself think about it, but lately my emotions are overwhelming even my resolve. I have a prayer in my heart to keep going one more day.
Day 81: Feeding Progress
I got a message from his night nurse that he was cueing and LOVED the milk drops on his paci, so I tried to get to the hospital earlier to try breastfeeding with him while he was hungry. I’m so proud of this baby boy! He breastfed so well this morning getting 21mL, then 3 hours later 11mL even though he was super tired. I got two burps out of him! We had so much help from his amazing Nurse Annie. He is now over 7 pounds!?!!
His hydrotherapy treatment was so relaxing for him, and I got to try after Occupational Therapist Larissa showed me how to slowly exercise his ankle, knee, and hip.
This little sad face! Our nurse practitioner Miss Anita started talking to me about mentally preparing for what happens if Henry doesn’t progress in feeding. Between 40-42 weeks they would do a swallow test on him to determine if he sees eating as dangerous because the food goes down the wrong tube. After 42 weeks they may weigh the costs and benefits of keeping us in the NICU, and send us home with a feeding tube and train us on how to use it. That wouldn’t be ideal because we’d need to work on our own with our pediatrician and other specialists to wean him and teach him to feed orally. It’s so much easier to just do test weights here at the hospital than to do them once a week at a clinic somewhere.
Day 82: Amazing Eater
Morning seems to be Henry’s jam. Jer and I went to the hospital early and planned to leave before crazy Friday traffic. I was worried because my milk supply has been dropping after I accidentally skipped a meal yesterday and didn’t drink enough, plus I pumped later than I was supposed to so there wasn’t as much milk in me as much as usual.
While nursing, Baby drank 23mL! I tried both sides in cross-cradle and football hold, so we used the full 30 minutes and got a nice burp out of him. I loved being able to see his big cute eyes! He was quite tired at the noon feeding, so we gavaged his milk and let him sleep while I held him to my heart.
Before we left, NP Anita chatted with us about an uncommon medication we could try with Henry that might help him with pain as a possible cause for his irritability affecting his ability to rest and feed. Jer and I wanted to give him more time since there have been several changes that we want to see through first, and the medication could cause seizures if not weaned properly.
Occupational Therapy did a bottle evaluation with Baby after we left, and Nurse Vee messaged me, “Henry did so good!!! He took 38mls. He is sleeping now. 😊” I’m so proud of him!
I feel like we accomplished something today haha. Jer and I got our flu shots to protect Henry during RSV, cold, and flu season. Financial Counseling at the hospital is working with us to apply for funding to help offset the costs of a long NICU stay.
Day 83
This morning we tried breastfeeding. The scale showed a 3mL difference, which was surprising given that he was swallowing and working hard long enough to have gotten more than that. My pumped milk showed a 15mL difference in my left and right sides when normally they are equal. Baby ended up spitting up 3 times at once all over the burp cloth, poor thing! There must have been a scale error.
His little bum is looking a lot better but there’s still a fissure in there. They lowered his feeding time to 30 minutes so that he would be hungry and want to eat.
Day 84: Due Date
It’s Henry’s Due Date! Today he is 7lbs 2oz and trying out breathing without the help of a machine. So proud of him! Once the feeding tube is gone, there’s nothing stopping us from going home. It’s anyone’s guess when eating will click for him. Happy 40 Weeks to this strong sweet boy!
The many faces of Henry. Nurse Vee said that he has such expressive eyes, and she calls him King Henry because he knows what he wants and he tells you about it 😆
Nurse Vee took this picture after I breastfed him and he was wide awake for hours, and when I held him he fell asleep right before he was supposed to eat again. She made us a scrapbook page of this milestone with room for photos; I will keep it forever!
I’m so tired right now, mostly because we visited Henry at the hospital last night from like 10:30pm to 2:30am, and then I pumped like normally in between and also we went to church and then I rushed to the hospital again for the 12pm feeding. It’s been a big day!
Now that Baby is full term he is acting like a newborn and wants all the attention and being held. The doctors remind us that he gets restless because babies are not meant to be in bed all day, they want to be a part of the family. We are all for showering him with love and affection! Jer is the one who wants to see him in the wee hours, and I want to make sure he drives back safely so I won’t let him go alone. It feels like we can see the light at the end of the tunnel and that whenever Baby figures out eating, it will be really quick before we can all go home together. I’m getting emotional just imagining driving home with our baby.
Read about next week: Week 13!
Check out more weeks from our NICU journey here.
