Saturday we said farewell and good luck to another family (Audrey-Jo) as they went home with their twin boys. We are very happy that they finally get to go home after 75 days or so, but also frustrated that we see so many people coming in and going home, while we remain stationary. A couple of weeks ago, my friend Robyn, who was Alyssa's neighbor in transitional care for a couple weeks also was lucky enough to go home. Since we've been in NICU 3 we've seen at least 12 families go home, and I can't even count the amount of babies that came and left so quickly in NICU 1 while we were there. Our day will come too. So in the meantime we just have to be happy for our friends that also had long, or short journeys in the NICU, and who have babies who are well enough to go home. I wish them all the best, and I really am happy for all of them, even if sometimes I seem a little bitter.
Since Alyssa's caffeine returned, she has been doing very well, with NO major apnea's. However the feeding has been really crappy up until yesturday. Most days when I'm in the car on my way to the hospital (usually the evening trip) I have a million things in my head that I'm going to write about, but last week were all depressing thoughts, so I thought I'd wait till we had a good day.
I was getting so frustrated last week. Alyssa had taken a full bottle August 11th like I mentioned before, but that was the best feed in what felt like forever. We were lucky if I could get one or two good feeds a day, and good means that she took at least 10 ml of milk by the bottle (56 mL is her full feed), or that she even seemed interested in breastfeeding. Everyday it was the same thing, I'd try, and usually have very little success, most the time she wouldn't even wake up for her feeds. She could sleep all day right through feeding time it seemed. I was getting worried. Her stools were very watery, her heart rate was very low, always sleepy even after trying everything to stimulate her, no big interest to eat...just very lethargic. I just felt like we hit a plateau. Meanwhile, every other baby in here is crying every 3-4 hours to eat like babies should be doing. I really am happy to hear about babies doing well, I hate to hear of a baby getting sick or having difficulties, whether it is my baby, or my friends baby. I just want MY baby to be doing well TOO.
I had some good "pep talks" with a couple of my primary nurse's last week and with one of the neonatologist fellows. Everything they say, I know is true. Alyssa is doing very well considering how sick she was. With her lungs being as damaged as they are, and to be on no oxygen, and for quite some time now, and also no diuretic for fluid is quite impressive. She was so sick for so long, and was so premature, that she just needs time. She can have all the time in the world, every day I see her, I am amazed at how far she has come. She is getting so close to reaching 7 lbs, probably even before the end of the week. That is a normal weight for a baby, who would have ever thought that this 1lb 14 oz little girl would be so big 3 1/2 months later. And when she is awake, she always seems so happy. I can't even tell you how much I love this little girl. Alyssa and Emily make me smile everytime I see them.
Yesturday, we had another "new to us" nurse. We've seen her in transitional care but yesturday was the first day we had her, and it was such a great day. Alyssa actually woke up for all of her feeds during the day, not crying, but looking around. She took TWO full bottles AND breasfed for at least half of a feed all in one day. I was super impressed. She also had her eyes checked, and she did fantastic for the examination with no desats, and didn't even need a soother to keep her calm. She still has Stage 1 ROP in her eyes, a little more then the last examination, but nothing to be concerned about. She also had a bath yesturday, so a very exhausting day for her overall. Hopefully yesturday was not just a fluke and then she continues to progress...back to the hospital I go.
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