Recovery Day 2

Today was a difficult day for Lyla & family. She was doing great in the morning with her heart rate gradually lowering, but the progress did not last. She quickly turned worse in the afternoon with an increasing heart rate, and halted body functions including essential urination (which she needed to reduce body fluid). As a result, the Dr.s decided it would be best to connect her to a bypass machine to give her heart a rest and take her off heart medications. This machine will essentially move her blood for her, so her heart will not have to. This would also enable her to recover on our terms, rather than before she went into cardiac arrest

After she was hooked up to the machine she started immediately urinating, so the doctors feel very good about their decision. For now she is expected to stay on the machine for 3-10 days in a sedated state. 

I didn't post a photo because it's not an easy one to look at, but were happy to share if you'd like to see her. Click the link below for photo:

Photo Here

Recovery Day 1

Recovery is not going as smoothly as planned. Lyla is having a difficult time urinating to get rid of all her excess fluids, and her high heart rate has not settled down (+/- 190-200 bpm). Because of this, she's been connected to an external pacemaker to control her rate and help get her heart back in rhythm, and is on a lasix drip to help her urinate.

Having "JET" is not uncommon after heart surgery, so hopefully she will pace out of it over the next couple of days. She is getting constant attention from nurses, her cardiologist, and even her surgeon,and the feeling is very optimistic that things will work out ok, she's just making her own pathway to recovery.

Heart Surgery

The day has finally arrived for Lyla's surgery to repair her AVSD. Our hope is that this correction will help her with a few other issues we've been keeping an eye on, including low energy, gastrointestinal issues, eye shifting, etc.

Its a day for mixed feelings because we're anxious to get her repaired, but at the same time, its a very invasive surgery and not a small thing. After arriving at the hospital at 6:00am, she finally went back to the operating room around 8:30.

It took a good 6 hours before we got to see her again, and she was heavily sedated to get her swelling down. The surgery itself went well. The surgeon let us know about a few unexpected abnormalities, including an atypical avsd formation that made it difficult to insert the artificial ventricular septum, and has resulted in a small amount of leakage. As described to us though, it should not even be noticeable to her in the future. It was also thought that her atrial septum had not formed, but it had, just in the wrong location that was partially blocking some of her blood flow. This membrane was completely removed during the surgery, and a gore-tex atrial septum was inserted in the proper location.

Our surgeon, Dr. Gary Raff, had also noticed that her lungs were not quite formed properly. Instead of being a kind of pinkish color on the surface, the had lots of little bubbles on the exterior. It does not seem to affect her breathing, and is not likely that any procedure will ever be needed.

Although we didn't do much, it was an exhausting day, and we were happy to see our little girl again, and so happy for all the prayers and fasts that helped make her surgery a success.

Home Sweet Home

  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!