Nearing the End of Our NICU Stay?

Hope has been doing big things over the past week! She reached 2,000 grams (just under 4.5lbs) sometime last week, which is the weight requirement for going home, and she reached 35 weeks corrected age on Saturday (and as of last night she was 4lbs 12oz).

Reaching 4lbs happened a while ago, but she finally got her sign marking that milestone!

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Both the weight gain and developmental capabilities that come from increased age meant that she could likely maintain her own temperature, so the doctor wrote an order for the nurses to start weaning her isolette temperature down until she reached the threshold to be moved to an open crib. That air temperature setting dropped so fast over the next couple of days! And she stayed perfectly toasty throughout the changes. On Sunday morning when Nathanael and I walked into the NICU, this was the first thing we saw:

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I recognized it immediately as Hope’s isolette because of the blanket on top and knew this meant she had been moved to an open crib. I cried, “That’s Hope’s isolette!” and was so giddy about her progress that I walked right past the secretary who had opened the door for us (who was waiting for us to provide ID that matched her list of parents who belonged there) so that I could take this picture. Oops!

The transition from isolette to crib during the period of time they were decreasing the air temp included adding a swaddling blanket to her bedding and removing, one by one, the little barriers that had been used for support and containment throughout her hospital stay so far. I acreally miss the Snuggli (one of the main barriers). I liked tucking her into that whenever I got her settled after holding or feeding her. It was cool to be able to help her feel a little bit like she was still in the womb. She started moving around like crazy once those barriers were gone! It’s pretty impressive. This is how I found her one day when I walked in:

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Hope’s feeding orders were also changed late last week to allow her to attempt to eat by mouth at any feeding that she shows feeding cues for rather than limiting her to 4x/day and no back-to-back feeds by mouth. That first day if I tried to feed her twice in a row she was thoroughly asleep throughout the second attempt and could not be bothered into showing cues. After a couple of days she could do a few minutes of nursing or bottling for one consecutive feed, but not a third. Yesterday she took two full feeds by mouth for the first time! Today she didn’t nurse very well for me for the two back-to-back feeds I went to (nothing during the first, and only five minutes during the second; she can normally get what she needs in about ten minutes), but I don’t view that as a setback at all because she took between 5 and 24 mls at every feed during the night, which is a huge step for her! So I know that because of all that hard work bottling all night she was just tired this afternoon and needed a break. If she doesn’t take enough from the breast or a bottle then she still gets enough to make up for it through her NG tube, so nobody panic that we’re suddenly starving the girl! The NG tube won’t come out until she’s able to eat by mouth every time consistently. As of today her “full volume” for one feeding if bottled or fed through her tube is 42mls, and the 24mls she did overnight is the closest she has gotten to that from a bottle so far. If she’s breastfeeding, it’s up to me to make the call of whether I think she got enough to be full. So far whenever I’ve said I think she ate enough she has slept until within half-an-hour of her next feeding, which was her normal behavior when she was 100% tube-fed, and she has been gaining about 1oz per day, so she definitely seems to get enough when she nurses well!

The caffeine Hope has been receiving daily as a respiratory stimulant was discontinued today, so now we’ll see how she does without it. So far so good! She has to be off of caffeine for 5 days without having any spells as one of the requirements to come home. So the very earliest she could come home would be Sunday if she can work up the endurance to take all her feeds by mouth that quickly.

Today I was asked for the second time this week if I’ve watched “the videos” yet, which refers to a few videos about safe sleep, CPR, and other infant safety issues that parents have to sign a form saying they’ve seen them before taking their baby home. Being asked twice this week is a great sign! That means the nurses are starting to think we’re going home soon!

Today’s nurse also asked the doctor for a referral for the company that provides a home nurse visit for the baby after discharge. Another awesome sign!

We haven’t been asked to bring in the car seat yet for Hope’s car seat challenge (she has to sit buckled into it for 90 minutes without having a spell), which I’m not at all surprised about because that usually happens in the last day or two before a baby goes home (based on my observations of other babies who have gone home already).

Other recent photos of Hope:

Usually when I’m at the hospital for more time than it takes to feed Hope, I get myself situated with anything I might need within reach. Book, Bible, pen, journal, coffee, water, pump and accessories, burp cloths, phone. There’s not a lot of space in our little curtained area, and there’s not much counter space within reach of my chair. So I get creative and use drawers to make what I need reachable 😛

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One of my favorite things that has been happening lately is Ella’s contribution to taking care of Hope. She was having a really hard time with my leaving right before her bedtime every night in order to make it to the hospital in time to feed Hope at 8:30pm, so I posted in a parenting group I’m in on Facebook asking for tips on how to help her cope with that nightly separation. Someone suggested having her pick out books or color pictures to send with me to the hospital for her little sister, so we tried it, and it worked! Ella was quickly distracted from her sorrow/fury and became excited about choosing things to send with me for Baby Hope. Now she initiates doing that every time I head off to the hospital. If she sees me gathering my pump parts, reaching for my bag, or putting on my coat, she starts running around the house grabbing books and stuffed animals and more books and her favorite blankets and piling them into the bag I always take with me. It’s hilarious and so so so endearing! I take pictures every few visits of Hope with something Ella sent along and text them to Nathanael to show her. Once I even took a video of myself reading a book to Hope; when I got home that day Ella declared “Mommy read ABC! Baby Hope! Hoppa!” Hoppa = hospital. ABC = It was an alphabet book.

Ella also asks more and more frequently if she can go to the hospital, too. And she talks all the time about “Baby Hope come home!” One of her latest fixations has been on Hope’s milk needing to stay “right there!” (usually the counter) until “Baby Hope come home!” This cracks me up but is also perplexing. She doesn’t understand time yet, and she sometimes gets upset when I try to convince her we need to put the milk in the fridge or freezer or it will become yucky by the time Baby Hope comes home. She just responds, “No, right there” and points again to the bottles of milk on the counter where she has safely placed them. At this point I usually just look for something else to do with her, and once she’s busily playing in another room I sneak back to the kitchen to put the milk away :o)

It’s starting to feel like it won’t be too much longer before we have both of our girls under one roof! I can’t wait for them to meet. Stayed tuned for tales of my sobbing buckets of joy when that happens!

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