Thank you everyone for your continued support. It is lovely to read all of your uplifting comments as I am sitting in the hospital snuggling this wee one.
Things have continued to be two steps forward and one step backwards. Last week, they stopped the IV nutrients and removed the UVC. That was very exciting, except… she then began to slowly but surely lose weight. They continued to up the volume of her feeds but she continued to drop by 5 grams here and 10 grams there. I was finding that very discouraging. Everything else seemed to be right on track but unless she starts to put on weight, she can’t come out of the isolette and… she can’t come home.
If I am going to be completely honest I think that we were finally getting an accurate measurement of her weight. Previously she had been on the IV and getting a lot of her weight from that. This nurse was also very ‘on it’ and removing some of the wires before weighing her (that was probably beefing her up artificially previously). Additionally, she was being weighed in the isolate, which seemed to give a different weight every time she was weighed, even if it was 15 seconds from the previous weight. Then they changed the isolette as the one she was in needed to be serviced and the number was TOTALLY out of whack. It was showing a 75-100 grams weight loss from the night before. I asked the nurse to get the rolling scale and weigh her again and, while it still showed a loss, it was at least a reasonable loss – 10 grams. I was finally feeling like this was accurate and something that I could trust.
When the doctors did their rounds yesterday, the resident mentioned Maisie’s ‘consistent weight loss’ and I challenged it, explaining my concerns around it. The doctor then firmly stated that Maisie was to be weighed on the same scale, in the same way… Every. single. time. He asked the nurse to put it in the nurses notes. I felt validated. They did, however, begin to fortify my breast milk so that it is now [approximately] 24 kcal per ounce. I’m ok with that, I really do want her to gain some weight.
Friday night, Maisie had her first bath! We were just expecting a sponge bath but the nurse got everything ready for a dunking. I loved it. Maisie didn’t like the scrub down part but when we finally dunked her into the water she calmed down immediately. The calm face that you see here is pretty much how she rolled while hanging out in the water.
And then: check out her VERY fuzzy head!
Last night Maisie was weighed “weighed on the same scale, in the same way”, and we finally saw a weighed gain. Yay! It was only 24 grams but I’ll take it! She just needs to keep doing that and things will be golden.
Today during the doctor’s rounds they decided that it was time for Maisie to come out of the isolette and into an open cot. It should be done by the time I get back to the NICU this evening. I’m pretty excited about that, it is another step along the path that needs to happen before we can go home.
The other thing that Maisie is now working on is taking all of her feeds by mouth. Yesterday, they began giving her a bottle for the first part of her feed and then finishing with the tube when she tires out. The problem with that is when she goes to the breast… We can’t really judge how much she gets at the breast and no matter how long she is there or how effective she seems to be, we still need to give her the full allotted feed by NG tube afterwards. Which means that they are effectively ‘ignoring’ her time at the breast. Yesterday, the failure in this showed up. She was very effective at the breast, my milk actually let down and I know that she got a reasonable amount from me. Then, when she was getting the feed by NG tube she had a huge spit-up. It appears as though it was just too much. Today we are trying her at the breast with a tube alongside the nipple, with the expressed breast milk flowing into her mouth at the same time. I want to be able to see how effective she is being at the breast. We should get a general idea this way. I met with some resistance at this suggestion, but given that it will give us (and them) more information, it was not turned down.
Alan came this weekend. It was pretty blissful to have him here but it did mean that I didn’t get as much sleep as I needed to really keep going. We left the hospital a little early on Saturday night (I typically go after Eamonn goes to bed and stay until 11:30pm or so), and went out for a glass of wine. It was almost comical. We went to the area that had all of the bars and asked around for a quiet place where we could have a drink and talk. The question was met with blank stares…. Basically, if we didn’t want to go to a club with booming music, no one knew where to send us. We really are in a college town. I also felt a wee bit on the old and overdressed side as we wandered around. Then of course, that glass of wine pushed me right over the edge and I just needed to get myself to bed. We were pretty tired but as Alan reminded me, we just had our first date night as parents of two. (!!!)
Alan got a lot of snuggle time with Maisie while he was here. It is lovely to see him with her snuggled up to his chest. They just seem to melt into each other. It meant less time for me holding her but the time was not begrudged in any way.
On Friday I went out and came back to see Alan was in a different chair. The nurse and Alan tripped over each other to tell me a story of Alan flipping backwards in the chairs with Maisie in his arms. He did everything right, he reached up with both hands and held her closely to his chest as they went over backwards. She didn’t even notice the commotion and slept through everything thankfully. This meant that she needed to be checked out by the doctor and needed to have an ultrasound done of her brain to ensure that she did not get knocked around. Everything checked out beautifully and now Alan is well known as the first father to go down in the NICU. They took the chair out of service and were going to have it checked out thoroughly. The funny part was that Alan was not even rocking. We really cannot fathom what happened. The only bump was to Alan’s elbow.
While Alan was snuggling with Maisie, I was headed out to get something to eat and saw a woman coming in with a guitar. I stopped and asked her what she was doing and she offered to come and sing for Maisie. It was a beautiful moment. I didn’t get it all on video but I got some of it. Alan was enchanted.
Eamonn was also finally healthy enough to go in and finally meet Maisie on Sunday. It was a pretty low-key meeting. He looks confused in this photo but he was quite curious about her and wanted to touch her. I look forward to being home where they can really get to know each other.
Sorry this is so choppy. I’ve been writing it when I have a few minutes here and there. I think that I have the important stuff in here at least.