A lot has happened in the last week, and I just haven't had any time to update, so I'm going to break it down into a timeline.
Anya's respiratory rate has been high, so after 24 hours on the low flow nasal canulla she was switched to SiPAP. They tried to place a feeding tube, but it was unsucessful. Two steps forward one step back, right?
Today her first chest tube came out, it had actually come loose and just pulled out while her nurse was changing her diaper. They said it was no longer needed because it didn't have much output anymore. They took out her catheter too, so now she pees in her diaper :) Another unsucessful feeding tube attempt, but I got to hold her today for the first time in over a week!!! That was fantastic :)
Today Anya sucessfully switched from SiPAP to Vapotherm, which is a high flow nasal cannula. I was there when they switched her so I was able to take a picture of her without anything on her face :) She is taking to her pacifier well, which will help when it comes time to bottle feeding. They were able to place a feeing tube today too! She started getting her first drops of breastmilk today, they started her on 3ml and hour to see how her stomach would handle it. They also took out the second chest tube, one to go! She weighs 5.8lbs today.
Emoree got to meet Anya today!!! I asked the head nurse yesterday if I could bring her, and she granted one visit for Emoree. Emoree was nervous but very excited, and in the end did not want to leave. Emoree finally got to bring Anya her present, her musical seahorse. She still asks me everyday when Anya is going to come home. Lots of pictures here:
The visit with Emoree was short because the commotion was too much for Anya, her heart rate kept spiking up. So later that night I went to visit her myself, and when I got there I didn't like what I saw. Anya's nurse was not in the room (which they don't stay in the room all the time anyway now that she isn't critical) but she was crying, her hands and face were bluish, she had kicked off her pulse ox monitor and ripped off her oxygen. I tried fixing her pulse ox and when I couldn't I went to find someone, and found a doctor in the hallway. The ICU attending fixed her pulse ox and tended to her and by that time she was pink again. He then explained to me that they were waiting for x-ray on her because she kicked out her last chest tube, and that one wasn't ready to come out. A while later x-ray came and determined there was an air pocket in her chest that needed to be drained, so they set up to put a chest tube in her side and I was sent out of the room. While I was in the family waiting room, my friend Sarah (whose baby is also in the PICU) found me and let me cry and vent to her. I had never seen Anya blue before, so it scared me but it is common for these HLHS babies to turn bluish when they get upset. This chest tube attempt ended up being unsucessful, but the doctor told me that it did release the air pocket, and another x-ray confirmed this so they did not try again tonight.
An x-ray this morning determined that there was still fluid between Anya's left lung and her chest wall, so Dr. Kaushal put a chest tube in her left side. On the plus side, she is up to 12.5ml of formula an hour. They ran out of my breastmilk (I don't get very much), so she was put on Pregestimil formula, 20 cal. Her sats were on the low side today, upper 60s-lower 70s, and respiratory rate is still high. I tried holding her, but her sats dropped to the 50s (even though she didn't look blue at all!) and no matter what the nurse did fiddling with her pulse ox, changing it, etc, it wouldn't come up so I had to lay her back down. Also her A-line in her arm was acting up and not getting an accurate blood pressure on her. The nurse practioner looked at it and determined it was leaking, so they took out her A-line (her hand is free now!) and said when they needed to draw blood they could do it from her central line (in her neck).
Today was supposed to be the day that Anya would be bottle fed for the first time, but that has now been set back a couple of days. She has chylomax, which is a complication of surgery where her chest tube output is a fatty, milky fluid. She has had a lot of output from her new chest tube too. Her formula was switched to Enfaport, 24 cal, which is a fat free formula she will be on for 6 weeks, though the chyle in her output should clear up in a few days.
I feel like we are moving in the wrong direction, yet Dr. Kaushal still assures me that Anya is "ahead of the curve". Today Anya's chest x-ray showed fluid in the right side of her chest, so they put in a second chest tube. I thought tubes were supposed to be coming out, not going back in!
I visited Anya in the evening as well and the sight of her central line in her neck bleeding made me feel uneasy. I haven't gotten to hold her in 2 days and I'm getting discouraged. I want to hold her, feed her, bathe her, change her diaper. She is over two weeks old and I just want to be able to take care of my baby :(
This morning I called for an update and they told me they upped her calories in her formula to 27 cal to see how she tolerates it. So far she has done very well with the nj tube and formula. They should also be putting in a PICC line in her arm or leg today, so that hopefully her central line in her neck can come out ecspecially since they have been having issues with it recently. They informed me they will also start her on a new IV drip med today to help clear up her chylomax, which she will be on for a week or two. She was down to 1 IV drip med (a heart med), so this will make 2. Oh and her incision is healing nicely :)
I would love to bring her home within 4 weeks, right now that sounds reasonable. I want her home before I have to go back to work (though very part time) on October 14th.
For something I have waited for so long to do, Anya's room is now complete :) Everything is washed and put away, her NB clothes are hanging in her closet, and her NB shoes all lined up. Most everything used to be Emoree's, as I have kept all of Emoree's baby items. Anya really only has very few new items that I've bought or my mom has bought, and a few very cute outfits from my cousin Kim. I still need to buy a high chair (though that can wait a few months), I want to buy a video baby monitor, a bumbo seat, DIAPERS & WIPES, and a few other things I can't think of right now :)
Oh and as for me, I am now down 19 lbs, I have 6 lbs to go to pre-pregnancy weight AND my regular jeans now fit :)