It’s Jill again. Still pretty sick and still very tired, but a little less of each today. Mostly I’m just missing my husband and my baby. But at least if I have to stay away, I know that the person I trust most in the world is there with her, and he’s doing a great job – reading to her, touching her, loving her up close while I can’t. I hate not being there, though.
It occurred to me that when I said before that Lucy was one month old, I really meant that she was 4 weeks old. I always think there are exactly 4 weeks in a month, but of course that’s not true. So Lucy was born on March 28th, and today, April 28th, is her real one month birthday. I’m so proud of our little fighter baby.
Lucy’s doing pretty well, mostly. There were a couple of less-than-great updates, unfortunately. Actually, a few, because one was from a couple of days ago and we forgot to mention it. When they took off the little heart sticker that held her temperature monitor in place, they saw that her skin was irritated, and she actually has three little sores and a bruise-like thing. One was dressed, the others not, and David said they were looking better today. I think these kinds of things are kind of inevitable when you’re lying in essentially one position all day every day.
Her blood gas this morning showed higher CO2 levels, so they turned her breath rate up to 55 from 50, when I was really hoping that it would go down. A small step in the wrong direction. The breath rate on the regular ventilator only goes up to 60, so she doesn’t have much more room to go up. They’re aiming for one blood gas test a day now, because they took out her UAC (umbilical arterial catheter) (they had already removed the UVC – umbilical venous catheter – when they put in the PICC line in her arm). So they’re only drawing blood when necessary, as they have to take it from the heel of her foot now, poor little thing. UPDATE: I just talked to David and her nurse, and she had another blood gas at six tonight, and everything was within a normal range. Whew, that’s a relief. So they didn’t decrease her breath rate, but they did decrease her vent pressure to 20, and I think that’s a bigger deal than the breath rate. Her nurse thought she was okay at 55, and that they would turn it down when her CO2 levels were too low. She said Lucy’s doing a lot of the work on her own now, so it’s fine that she’s still needing a little help blowing off extra CO2.
The third potential negative update is that she had a little residual milk in her tummy when they checked today, so she had to miss at least one feeding until they figure out what’s going on. She’s been getting 2 cc’s every 6 hours, but when they checked she had 3 cc’s in her belly. David says they weren’t too concerned about it, and they said even full-term babies do that sometimes. We just hope it isn’t the start of feeding intolerance, which can be a real problem for preemies. She’s done well so far with feedings, though, so maybe it’s nothing. I assume they’ll check again to see if it went down, and maybe do an x-ray to look at her bowel. UPDATE from David and the night nurse: they checked for residuals at her six o’clock feeding and found about 1 cc, so they fed her 1 cc more. They’re not worried about the residuals because 1) her tummy is soft. If it were obstructed it would start to feel hard, 2) the excess amount could come from saliva, mucus, and bile, and 3) it didn’t look like it had excess bile, or that it had gone down and come back up. If any of those things had been different, they may have worried, but it looks like it’s normal, and she should hopefully get her normal amount of milk at her midnight feeding. Her nurse said since it was her birthday, she should have some cake, and since she can’t have some cake, I should eat some cake and she would feed her that breastmilk, so it would be birthday cake milk. Ha, I love the nurses.
In other news, her oxygenation has been pretty good (staying in the mid-30s mostly, I think). Now that she’s back on the regular vent she’s undergoing “respiratory therapy,” which means giving her pulmicort and levalbuterol, which are basically asthma medicines. These should help her lungs recover and help her breathe easier. Hopefully they help keep her off the oscillator, as well. But the girl is growing! Our little Lucy is still little, but she’s up to 820 grams, which is about 1 lb. 13 oz. Her TPN (total parenteral nutrition) is at 12% concentration, now. They can increase it up to 15%, but I think they won’t unless for some reason she can’t start getting calorically significant amounts of breastmilk soon.
So that’s basically all the Lucy news. I don’t know if she can tell that I haven’t been there, but I feel guilty that she’s been without her mommy for a couple of days. David’s been visiting as usual, and he touches her and reads her stories. She always seems more relaxed when he’s with her, so that makes me feel better. He’s also been really good at getting the updates, and he was very sweet to take over blog-posting yesterday. It’s not like he’s much less tired than I am, after all.
I have been getting a little more sleep while I stay here at my parents’ house. Part of that is that they take care of me and help me do all the stuff I’m used to doing myself. It’s nice to get more sleep, although it makes me feel a little guilty because 1) David’s there doing all that stuff by himself, and 2) I feel like I shouldn’t profit by leaving my baby, although that’s obviously not very rational. And it’s actually a good thing, as I’ve noticed an obvious increase in my milk production. It’s still not a ton, but it’s definitely better. David created an Excel spreadsheet to keep track of it, which is very useful and was a good idea.
A long note about pumping breastmilk, for those who have been wondering what I’m doing/trying. If the idea makes you uncomfortable, just skip this paragraph. Breastmilk is one of the most important medicines Lucy can get, as far as I’m concerned, and luckily, this NICU sees it the same way. They are incredibly supportive of feeding babies breastmilk. Unfortunately, there are several things getting in the way of my production. One is separation from my baby, because being with the baby releases hormones that promote lactation, and because babies (full-term ones, anyway) are more efficient at getting milk out than any pump. Another problem is my schedule and stress levels, as stress and lack of sleep both prohibit milk production. Yet another problem is that Lucy was so premature (as if that wasn’t enough of a problem anyway). You just aren’t meant to be breastfeeding at 23 weeks gestation, so lots of moms of preemies have trouble establishing supply. It’s interesting though – the milk you produce for a premature baby is different than it is at full term, and has more protein and lipids that are important for preemies’ continued development. The human body is amazing. Lastly, I have PCOS (polycystic ovarian syndrome), which can have a major impact on sufficient milk production. Because of all these things, I have relatively low output (about an ounce per pumping). But it’s so important to stockpile as much as I can for when she needs it, and to keep up milk production if I’m to have any chance of breastfeeding when she’s ready, that I’ve been following a pretty strict regimen. Since a few hours after I gave birth, I’ve been pumping with a hospital grade double electric pump every two hours during the day and every 3-4 at night. It’s a tough schedule, especially since it can take almost an hour when you take into account getting ready, pumping, labeling and freezing the milk, and washing all the equipment. Our whole life now basically revolves around my pumping schedule. David is the best partner, though, and helps as much as he can. He’s well-known at the Ronald McDonald House for doing all the cleaning up, and they all think he’s wonderful. In addition to the pumping, I’m trying to stay well-hydrated and I’m taking all kinds of medicines/supplements. I take metformin (a diabetes drug also used to treat women with PCOS) to promote breast tissue growth. I take fenugreek, goat’s rue, and Motherlove More Milk Special Blend (all herbal supplements recommended by the lactation consultants). And I’ve been drinking Mother’s Milk tea occasionally, which has essentially the same herbs as in the aforementioned supplements. There is at least one prescription drug available that can help with milk supply – Reglan – but I’ll have to ask my doctor about that one. Anyway, it’s been a long, hard, frustrating road so far, and it will continue to be for probably quite awhile longer. Even when Lucy is ready to breastfeed I’ll probably have to continue to pump to keep up my supply, if it lasts that long in the first place. I had always planned to breastfeed, and it’s heartbreaking to think about not getting to have that experience with her.
If you’ve read this far, thanks for bearing with me. I feel I should reward you with adorable Lucy pictures, but I don’t have any new ones, unfortunately. David took a few but didn’t have time to upload them. You’ll just have to take my word for it that she’s precious – tiny and perfect and looking better all the time. We’ll try to upload pictures soon.
Tonight Lucy’s nurse said she was performing acrobatics for them – kicking, fist-pumping, and “doing the splits.” She said she’s a wild woman. I love to hear that kind of thing about her. She definitely has a lot of fight in her, and her mama couldn’t be more proud.