Last night was a little rough. It wasn’t anything terribly serious, but Emmett had about a million desats and a few bradys and the alarm was pretty much going off all night. And when he wasn’t tripping his alarm, he was fussing, so I was up consoling him a lot. Needless to say, I didn’t get much sleep. I’m home tonight and hoping to catch up.
The nurse thinks the increased desats may be partially due to the increased feed volumes. Basically his stomach gets so full it pushes up on his lungs and makes it a little trickier to breathe. They aren’t too worried about it and say he should learn to adjust pretty quickly. Right now the highest priority is putting on weight, as the desat and brady episodes are something he should naturally grow out of as he gets bigger.
Unfortunately, we had to postpone one part of his feeding plan. In addition to increased milk volume, we were supposed to increase the fortification of my milk from 24kcal to 28kcal — but he’s losing a little too much fluid via his diapers and the nurse thinks he might not be processing the fortified feeds as well as he should. So we’re going to give it a few more days and try again. At his weigh-in tonight he was up to 2 lbs. 2 oz. Keep growing!
The nurse drew his bili again this morning and it was slightly elevated — up to 3 from 1.5. It wasn’t high enough to put him under the lights again just yet; they are hoping at this point he can regulate his bilirubin on his own. So they’ll check again in a couple days and decide then whether he needs another session.
He also had another head ultrasound today to check for brain bleeds. Apparently this is something they do three times in preemies — at one week of life, two weeks and then a final time at 30 days. I had assumed since our first scan was clear that they wouldn’t be doing one again, so I was a little surprised when the ultrasound tech showed up on our room this morning and I got a little emotional with worry. Happy to report all is still clear. At least now I’ll be prepared for the third and final ultrasound in another couple weeks.
We had a good kangaroo care session today. He was very mellow and stayed on me for about two and a half hours. I also got to help the nurse reposition him in his isolette, which included holding him while the nurse repositioned his sleeping pad.
All in all, a pretty good day, despite a sleepless night before. E is now two weeks old, which is really hard to believe. It feels like it’s been forever and just yesterday at the same time.
Today was a good day, followed by a not-so-great evening. I’m emotionally drained.
First, the good stuff…
This morning, after being under the bili lights again for almost 24 hours, they checked E’s levels and they were down to 1.4 (they were 7 something before). So he got to get rid of the lights — hopefully for good, this time. They increased his feedings again from 3 to 5 ML, and he’s tolerating the increase very well. He’s also pooping like a champ, which the nurses are all very impressed with! They’re also very impressed with his newfound ability to suck on a pacifier, which is pretty amazing for 27 weeks. Everyone just keeps marveling at how well he’s doing so soon, and for so young. He really is our little miracle baby.
As I mentioned in a previous post, one of the routine exams they do about a week into life with preemies is a head ultrasound to look for brain bleeds. We were told they are measured in severity from 1-4, with 1 being mild and 4 being severe. I have surprised myself with my ability to stay away from Dr. Google through this whole ordeal, so I couldn’t tell you what a brain bleed means, but I’m guessing it’s bad. Thankfully, that’s one less thing we have to worry about because his scan came back completely clear. No bleeds. That was a huge relief, but it was a pretty emotional hour for me in between the tech conducting the scan and waiting for the radiologist to give the results to E’s doctor.
Theo came to visit again today but he wasn’t as interested in Emmett this time. He was still very sweet and waved to him and blew him kisses, but he was WAY more interested in the cool chair with a table attached.
After a brief visit, I took T home and we all had dinner together, and then I rushed back to the hospital. I needed to get back so I could do another kangaroo session at 8, something I had discussed with our daytime nurse, whom I adore.
(and this is where the good turns to bad…)
When I got there, the night nurse (a new nurse I’d never seen before) practically lectured me when I mentioned wanting to do kangaroo care, saying we should only do it once a day when they’re this small. I explained to her that we hadn’t done it yet today, and that our day nurse and I had agreed that 8 p.m. would be an ideal time to do it, after they came in to do his diaper, feeding, etc., She agreed to it, but she seemed annoyed by my request, and I felt like she kind of rushed getting him out of his isolette and onto me, and didn’t even really help me with my positioning. It was still nice to hold him, but he wasn’t nearly as calm as he had been the other two times, and his oxygen levels dropped a little instead of rising like they had before. His heart rate also dropped very low at one point, briefly setting off the alarms. He recovered on his own, but it just wasn’t the blissful experience it had been before.
When I was ready to put him back, my nurse apparently was on lunch, so a nurse I’d never worked with before came to put him back and I felt like she rushed it too. She basically just lifted him off me and set him in his isolette without taking the time to make sure he was comfortable, or that his wires weren’t pulling or bunching in any way. I was particularly concerned about his nasal cannula, because the tape was pulling down on his lower eyelid so he couldn’t close his eye all the way, and the cannula was twisted to the point it wasn’t even in his nose anymore; it was just below it and slightly off to the side. When I called our nurse into the room to fix it, she said she was going to see if they had a smaller cannula. I explained that the other nurse had already looked into that and that this was the smallest they had — and that while it was a little big and slipped position occasionally, he had been wearing it for five days with mostly no problems. She didn’t even listen to me and just kept saying she was going to ask the respiratory therapist if he had a smaller one, but that he was at a delivery now and he’d look at it later. I told her I was concerned because if E stopped breathing and the machine went into backup mode (it will breathe for him if he goes 4 seconds without breathing), it wouldn’t do him a lot of good if it weren’t in his nose. She said if he stopped breathing they would “just bag him.” I was shocked and told her it wasn’t necessary to jump to extreme resuscitation measures if she would just fix the cannula so it was angled properly into his nose. She tried to say it wasn’t a big deal and that the alarm would sound at all the nurses’ stations so someone would get to him. I felt like I was talking to a brick wall. Just fix the cannula – we’ve had this for five days and it’s been working fine. It just needs to be adjusted. By this point I was starting to cry out of frustration (and fear) and she made absolutely no gesture to try to comfort me or anything. I get that this is her job, and maybe she’s a bit jaded, but this is my baby and she should treat parents with the compassion someone going through a traumatic experience deserves. Finally the respiratory therapist arrived and it took him less than five minutes to fix the cannula and Emmett seems to be resting comfortably now.
I have no idea why this turned into such a big deal, but I’m tempted to talk to the charge nurse tomorrow and request that she not be our nurse again. I’m not even sure if I can do that, or if it would cause more drama than it’s worth. I have been VERY happy with most of the staff here, but there are definitely some nurses I like better than others. This is the first time I’ve outright disliked a nurse here, though. It’s a helpless feeling to know we’re here for the next 3 months and our child’s life is in their hands. It’s not like we can just pack up and take our business elsewhere.
Oh, and she kept calling Emmett a “she.” Not a huge deal, but on top of everything else, it just feels like she doesn’t care.
It’s almost 1 a.m. and I am going to attempt to get some sleep. I have a feeling I won’t get much tonight though.
We had another great day today. Most of it was blissfully boring. One exciting milestone we reached, though, is that we finally got to start feeding. So far it’s just one ML of pumped milk through a feeding tube, every three hours. As long as his system tolerates it, we’ll gradually start increasing the amount. We can also take a small dropper and give him a few drops on his tongue or lips to give him a taste. He loved that. He became very alert and lapped it right up.
D spent the night and the first part of the day with him, while I stayed with T, and then we switched places at noon and D took T for a hike after his nap. I missed his first feeding and by the time I got there for his second feeding, I could already see a remarkable difference in his appearance. He just looked so much healthier and vibrant. The real test will be whether his digestive system tolerates it, and while we have yet to see the first diaper to officially evaluate its success, the doctors could tell it had at least moved beyond his stomach, so that’s a great sign that his system is working as it should.
They aren’t making any changes or adjustments in the near future, aside from possibly lowering his oxygen concentration since he is getting better at breathing on his own. Unless anything changes (which we’ve been warned, can and does happen a lot), we are sort of in maintenance mode right now so he can continue to grow and gain strength. He will have a head ultrasound on the 25th to look for brain bleeds (standard protocol for preemies) and his eyes and ears will be checked at some point – usually around 32ish weeks.
I’m spending the night at home again tonight, while D stays in the NICU. I’ll take T to school in the morning and then D and I will both hang out at the hospital for the day tomorrow. I’m hoping we can find a good routine so we can minimize any disturbances to T’s world.
Keeping up with the Hoffmans 