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! :)