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 

Appointments for Dayyyyyyyyyyyyys

It was a busy week for us. Lily had PT on Monday, OT and visiting nurse on Tuesday, GI specialist on Wednesday, Pediatrician on Thursday, and lab draw on Tuesday and Thursday.

The visiting nurse comes mostly just for weight checks, but also to answer any questions we have about Lily's G tube or other care.

With PT, we are working on a few things. She has something called torticollis. Her neck muscles are stiff and weaker on one side, so she often tilts her head a certain way. We are doing exercises to strengthen her weaker side. We are working on tummy time as well and just over all strength and flexibility. She is starting to bear a little weight in her legs if we hold her up with her feet on the ground which is an improvement since bringing her home.

With OT, we are working on oral motor skills, eating and swallowing. She currently gets all of her nutrition through her G tube, but we want to start teaching her how to eat and drink on her own. She can handle the tiniest little bit of puree and drops of breastmilk. This is going to be a long road I think.

For hematology, she has an ultrasound on the 8th and a visit with the Dr. after that. We are pretty sure we will be able to stop the lovenox shots after that. The Dr. wanted to check a blood level to see if her lovenox was still at a therapeutic dose, so I took her to the outpatient lab connected to the children's hospital. Several people told me to bring her there because they are the best at drawing labs for kids. Unfortunately, they couldn't get it even after 3 tries. We went back again on Thursday and they still couldn't get it! I called the Dr's office to let them know. I didn't hear back yet, and I'm assuming there's no point in trying again with the ultrasound just a few days away. It was so traumatic for her and for me :( 

The GI specialist is part of her team now to help manage her feeds and nutrition. We are going to slowly increase her total volume of milk/formula (currently she's getting 50:50), and also slowly condense her feeds down to boluses instead of continuous feeds. Right now she has feeds running 21 hours a day.

In a few weeks, we have an appointment with a neurodevelopmental specialist. I'm not exactly sure what they will be doing. Dr. Raj, her pediatrician also wants her to follow up with an opthamologist because she had strabismus in the NICU. Although, we don't ever see her eyes wander anymore.

Some good news! I talked to our surgeon here in GR, and he talked to the Boston surgery team and they decided that Lily can have her next dilation here! I'm so glad we don't have to fly back out there. We scheduled a dilation for Oct. 22.

As far as her reflux goes, it's still much better than when we first brought her home although she has the occasional bad day. The GI doctor pointed out something interesting though, and that's that her anatomy is such (as is with all babies) that reflux will happen. But she's on 2 different antacids that prevent the reflux from damaging her esophagus. That was encouraging to me. The reflux itself isn't all bad, it's the acid that can be truly harmful. She will most likely have acid reflux for her whole life because of the esophageal atresia, but hopefully as she grows and gets older it won't be nearly as bad and she will be able to eat and drink normally. The doctor told us that she will learn how to adjust by eating slowly, taking small bites, drinking lots of water with meals,.. that sort of thing. 

She was on a very low dose of an antibiotic to help with gut motility. Apparently, the EA team prescribes it for a lot of kids with reflux. I think it may have been causing her to have diarrhea, and she has a horrible diaper rash now, so we decided to stop the erythromycin to see if her diarrhea stops. Hopefully it will, and hopefully it doesn't affect her reflux. 

In other news, Cora is doing well. She loves to eat, and the contrast between her and Lily sometimes strikes me as sad. Cora is sitting up on her own, rolling and scooting around (not crawling yet), and loves every food we offer her. Rose is handling all the changes really well. Sometimes she a little extra clingy, but overall she is her happy self. She also needed some labs drawn this week for her allergist appointment coming up soon. She has an egg allergy that we are hoping she will outgrow. She was so brave at the lab, and I took her to the park and got her a happy meal afterwards. It was really fun to have some Mom and Rosie time. Big thanks to my Aunt Mary and Uncle Dick for watching the twins. 

Hopefully the appointments will start to be less often and we can start getting settled into some new routines. We have the twins in the same room now at night, and it's been a week of little sleep for us. We're hoping that they will start getting used to each other and start sleeping through the night, pronto! :)