The NICU experience is truly day by day. Within a day of posting about Haylee coming home the plans began to shift. I believe we waited a few days about her coming home just to make sure it was happening. Though we waited it only took one day for that to change. Haylee was pretty set to be coming home this weekend, and at this point it appears it won't be for another week or so. Wednesday night heading into Thursday Haylee began to struggle with some of her feeds, we didn't think too much of it and figured she was just getting tired from all her hardwork. Well come Thursday we got a phone call from our RN, who told us Haylee had an episode that morning where she needed to be stimulated to begin breathing again, and she took some time to recover. Because of this and her hemoglobin levels Haylee was going to need a blood transfusion. After the transfusion she has been doing much better, though she has not passed her car seat test yet. As much as we want Haylee to come home we do not want to rush her. We were disappointed, but have come to understand that things change from day to day, and we have to follow the girls lead.
The same day that Haylee was given a blood transfusion, Rylee was given one also. The previous night Rylee had three episodes while I was holding her. At one point her oxygen saturation dropped as low as 38. With each episode she would dip and not fully recover in between. Along with the episode her skin color was very pale, and we could tell something was off. That night the RN drew labs and Rylee was very low on her hemoglobin as well. Following the transfusion Rylee seems to be doing well, but not fully there yet. Friday wasn't very eventful, but today was. She again appears pale, and did have three episodes. But she is a fighter and seemed to have turned things around as we were leaving. When we asked what it could be the RN let us know there were multiple possibilities, but three that would be most likely. One is that she just tired from all her feeds and needs a little break, two she may need one more transfusion, or she could potentially have an infection. After taking a break from her bottle feeding, she appears to be doing better. Hopefully that is a sign that she just needed some extra sleep.
As I write this even though I am discouraged, we still feel very fortunate. So many premature babies have a host of other more serve conditions to fight through, and we are just so blessed with the girls. Though they struggle at some points, they are overall healthy, thriving, and doing well. They continue to gain weight (Haylee is now 4 lbs 15 oz and Rylee is 4 lbs 2 oz), and will eventually outgrow the apena and reflux. It is a lot to work through, but in the end they will be ok.
Rylee taking a nap and Haylee hanging out.
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