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!

Day 28, Friday

  Still not exactly sure why there is milk coming in the stomach and up the tube, but Lyla has been pretty good about it. Today she seemed to be breathing much faster than usual and her O2 stats have been low in the high 70s. Nurse Shelly was doing a "blow by" with the oxygen mask, just lesving it near Lyla's face to help get the stat up. I am starting to feel like we are taking small steps backward now. She hasn't had any outburst fits, so that is relieving at least.

  Trevor and I have been practicing things that we will have to do at home and one of them is the lovanox shot... I really have no interest in doing this and even had the nurses change the time they do it to 6am so that Trevor would have to do it every time. But I still need to learn it and feel comfortable so tonight I did it... I stuck a needle into my (sleeping) baby! It was honestly not as bad as I thought, but I still really do not want to do this! I think Lyla has a couple of weeks left on these shots before they do another check on the blood clots.

Upped feeds to 27ml an hour, with two hours off in the day.

Day 27

(This is how I found her when I walked in)

Yesterday (Wednesday) there was a white-ish liquid backed up in Lyla's tube. Usually it's meds or mucus so we thought it might mean milk, which would mean the ND tube was not where it should be. After going down to X-ray, they were able to follow the line with dye and confirmed that the tube had NOT moved. So this means.... Not sure. It's possible there was some back leakage of the tube from the intestine, but it's pretty well placed so I'm not sure what happened. And the Dr is not too worried about it as long as Lyla doesn't get more gaggy or start spitting up, and so far she hasn't.

She did have a bad fit in the afternoon which she hasn't had since Saturday ( according to Dr. Vlautin). She was pooping and got really upset and turn purple in the face and really modeled all over. She continued to have smaller fits/random outbursts for a good part of the afternoon, maybe an hour or two, where I would be continuously patting her back to calm her down. This, coupled with the milk, had us feeling strongly about postponing bringing her home soon.

The Dr. Had taken Lyla off Ativan the day before and felt this was also a contribution to Lyla being uncomfortable. She is getting the tiniest dose that we aren't sure it's even getting down the Gtube sometimes, but I guess Lyla likes it. So she is back on with the plan of fewer doses to gradually wean her again.

Talk is still going on about a different line to feed Lyla. Dr. Vlautin originally thought the G-J tube but Lyla is too young and small. So now she would get just the J from her Mic-key, removing the line to her tummy, and replace the ND down her nose to a NG so we could give her medicines that way. The medicines need to go to her tummy and not the small intestine. I'm not sure which way they will go, but if she's not big enough for the G-J, then there is no point of switching anything around.

Day 25

  We are so grateful for all the prayers and support we have continued to receive throughout this whole ordeal. We feel very blessed to have amazing friends and family. Thank you!

  So the plans have changed for Lyla. Originally they wanted to try the Gtube if she didn't spit up after a couple of days. But GI, the cardiologists, Dr's and nurses agree that they want Lyla to have a good solid 2-3 weeks of gaining weight before trying to feed into the tummy. Therefore they do not want to try the Gtube right now. This mean that Lyla will likely get sent home with the ND tube. So far Lyla hasn't been too great with gaining. She does a little at a time and then maintains a day or two and then gains and back over again. So we are really hoping Lyla will start gaining consistently so we can get that tube removed from her nose and get food going to her tummy again!

  Other than that, Lyla's reflux continues to make her gag and wretch. I feel so terrible when this happens because she looks so miserable. It's a terrible feeling, and it makes her heart rate dip way low (80's).

  Made some really great eye contact today! She hasn't been the best at focusing her eyes on an object, or person, and today she was looking at me and Keeping her eyes locked on me! It was really exciting. Even her primary nurse Cheryl noticed and said she thinks Lyla recognized her name today.

  Went down to radiology to replace ND. It was just barely where it needed to be in the small intestine and coiled in the stomach, so they wanted to get it in perfectly. Lyla, of course, did not like this but she did a great job recovering. After they came out of radiology I said something to the nurse and Lyla cocked her head toward my voice and was looking for me! It was awesome, and I really wish I could have just picked her up right then and held her.

Received RSV shot on Sunday.
Feeds are now 25ml from 22mls, as of Saturday?