One day at a time

Yesterday Anabelle had a sleep study scheduled. However, Kyle and I didn't feel comfortable with her G-tube site. It was red, sore, oozing, and she was VERY fussy. So I canceled (and will reschedule) the sleep study and it was off to the ER. I had called her primary, her surgeons office, and her GI before going. It is the last place I'd like her to be, filled with who knows what kind of germs, and she needs the sleep study over a few hours in the ER. However, no one had gotten back to me throughout the day, or they directed me elsewhere. So around 6:30 I decided to take her in. 
We spent a total of about 3.5 hours there. Answered many questions about Miss Anabelle, to patients and nurses alike. The biggest wait was for the pediatric surgeon. She was in the OR... I really like her though. There are 5 pediatric surgeons for Sutter, and we have met 4 of the 5. It's nice too because there are two in particular who have followed Anabelle since birth and know her progress and just her overall. Well, she doesn't have an infection or anything luckily. But the tube was moving around too much, it was 'wallowing'. So basically, the whole is getting bigger then the tube. This is causing all of the redness and oozing. It wasn't oozing puss, rather just milk and gastric fluids. She put some gauze and tape to hold things in place and absorb the liquids. We just change it when it is wet, and it seems to be helping. The past few days Anabelle has been just flat out fussy. Hard to console, crying non stop, etc etc. But now I think it's more normal baby fuss. Which is a nice change. 


Also, the surgeon advises that we no longer hold her chest to chest. With the way Anabelle... is, especially her legs are, it's been the easiest and seems to be her favorite. It's very difficult to cradle her. It's possible, but difficult. Her hips don't come in as much as they should, and her head control is lacking. So I will admit it, I started crying. She did a good job trying to console me. It's just hard because I want to give her comfort, and I can't even hold her how she wants. Like everything in life, there is a reason. 

Don't get me wrong. It hasn't been easy. She will give me a look her and there. It feels like she is trying to ask me 'Mom, what the heck are we doing!?' I know that being forced to do this will help her all around. Help her tube to heal, help her legs come down and get together, and more. 

I mean, just look at her progress so far! The picture on the left is from the NICU, maybe at a week old. The picture on the right is from tonight, at 12 weeks old. We haven't started any real intense therapy yet either. Just a little passive range of motion. AMAZING! Her legs still come up if she is laying in the right position, but the fact that they can come down is just amazing. 

Next week we see our OT (Part of the early development program here) and hopefully start doing craniosacral therapy! 

With love, 

The Polks