Well, we've been home for 3 weeks and it's gone by so fast! Lyla came home on December 9th with the ND tube (to her small intestine), the Lovenox shot (twice a day), plus a little bit of Ativan that we have been left in charge of weening her from... It has been a challenge to adjust having her home and getting the feeding regimen and medicine routine down. It has been a full time job for me during the day to be in charge of remembering the different medicine (7 total), keeping the milk flowing, tummy time, milk tastes, diapers, and keeping Lyla calm when she has her fits. For some babies you can let them just cry it out a little bit, but we have to try and nip the fit before it escalates to her going beyond turning purple. For the most part, patting her on the back or on the chest will calm her down, but as soon as you stop she starts fussing again. This often becomes a time consuming process. Like before, her fits are usually triggered by gas and pooping. She also now has a cough and she is still wretching which all can trigger a fit as well. And the last couple of days she gets real sweaty from working so hard. We have also discovered some blood in her stool and have sent samples to the lab. But with the holidays, we have yet to hear anything back. The pediatrician and cardiologist are thinking it's probably a torn something from her working to hard when she poops. Or it could be some kind of infection...
Lyla has been gaining weight and doing good with her feeds, so we've been given the ok to try feeds in her tummy again! Well, for an hour a day at a slower rate, but still exciting. We have tried twice so far and she has done pretty good. No spit up so that makes it successful to me. But she has still been wretching. Not sure if it's just her regular wretching or tummy related.
We've also had a cardiologist appointment since being home and he said everything was as expected and upped her Lasix to .8ml to relieve extra fluid in lungs. And then on Saturday, Lyla had her NDTube line wrapped on her foot and she kicked it out of her nose! About 4 inches out. So we had to take her into the ER to get it re placed by radiology. And of course radiology was gone for the day, so that led to an overnight stay... Luckily radiology came in the morning to replace Lyla's tube. Trevor had them switch to the other nostril to giver her left nostril a break.
Lately she has been reaching at her face, probably her tube, which has been awesome to see her controlling that movement but scary because she might pull it out! She has gotten a hold of it a couple of time and pulled it out about 2 inches. Not sure if it got pulled out of her small intestine, but we haven't seen any milk come up from her gtube, so I think all is well. It's just been frustrating because the tape doesn't stay on her face very well and I'm sure she's going to try and grab it again. We are just hoping that the gtube feeds continue to go well so we can get the ND removed. It's time!
It's been really great having Lyla home, but also difficult. It's frustrating to have to try and distinguish her heart failure. We are on lock down because we don't want her to get sick and delay surgery or rush surgery. I'm afraid to take her anywhere other than an appt. Hopefully we can get a more definitive timeline for surgery!
Weening the Ativan. It's going ok, but boy can we tell the difference.
Sleeping most of the day, but has some good stretches of awake time.
Still not able to focus her eyes and make contact.
Starting to make the sweetest cooing sounds!
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