One Month at Home

It's been a busy first month at home for Lily. I can't believe it's been a month already! The twins are 9 months old now. Crazy. 

Let's start with some good news. Lily's blood clot is gone! She had an ultrasound a couple weeks ago at the hospital and it showed that the clot is gone. The hematologist wants to do one more ultrasound in 3 months just to make sure things still look good. She doesn't think it's related to Lily  having a clotting disorder of some kind, but rather just an unfortunate thing that sometimes happens with central lines. If Lily ever needs another central line (fingers crossed she won't), they would take extra precautions to prevent another one. Otherwise, shouldn't have to worry about clots anymore. So no more lovenox shots!!

Lily is getting stronger and stronger. PT is still coming once a week. Just yesterday and Thursday, she rolled over for the first time! Thursday she rolled back to tummy, and yesterday she rolled tummy to back. Her torticollis is definitely improving. Her head shape is still pretty flat in the back, so on Monday we are getting a helmet from Mary Free Bed. She had the measurements done last week. The Orthotist thinks she will need the helmet for about 4 months. 

OT is going pretty well. We had to take a break from trying food orally for a couple weeks because Lily wasn't feeling good, but she's back at it now and seems to really like tastes of breastmilk. 

Her diarrhea I mentioned in the last blog post lasted for 3 weeks. We have no idea what caused it, but thankfully it finally stopped and her diaper rash is gone. A week ago, she had some dark brown emesis, black stool, and coffee ground black stuff come out of her g tube. All signs of a GI bleed. The worst of it was this past Sunday night/Monday morning. I called the GI office and they didn't think she needed to be seen emergently, but decided to do a scope at the same time she was scheduled for her dilation with the general surgeon on Thursday. Thankfully, she had no more weird symptoms after Monday morning. The GI doctor ordered some labs just to be safe, but those all came back normal. Thursday morning, Joe and I took her to the hospital for her procedures. The GI doctor wasn't available on Thursday, so he asked Dr. Pennington to see if he could see any signs of a GI bleed. Dr. Pennington said he didn't see anything unusual, so maybe it was something that resolved on it's own. We're not sure what that was about. Her esophagus was back to 6mm in diameter which is where she was at the start of her last dilation in Boston just over a month ago. So he dilated it back to 10mm and said we should stretch it again in 2 weeks to try to keep it stretched. So not bad news really. We're glad she didn't stricture way down and that her anastomosis site looked good. Hopefully after a couple more stretches, her esophagus will stay open more.

With everything going on GI wise, we didn't really work on increasing her feeds or trying to condense them. Hopefully now that she's feeling better, we can start working on that again. Right now she's still on continuous feeds for 20 hours a day. 

Cora has started army crawling, so we have to be extra careful with stuff around the house now! She actually got a hold of Roses' milk cup and drank a little bit. She broke out into a rash around her mouth :(  I gave her a little Benadryl and it went away. Hopefully she's like Rose and will outgrow that allergy/intolerance quickly. Cora also got her first two teeth.

We had some family photos with Kim Jarchow a few weeks ago. They turned out amazing! Check out her website, she's the best! http://kimberjphotography.com