I Could Not Ask For More

It never fails that on some of our worst days with biliary atresia, the perfect song comes on during my therapeutic run. 

Today it was "I Could Not Ask For More" by Edwin McCain. 

This morning was our regularly scheduled clinic visit to Primary Children's Hospital. I was actually looking forward to this appointment because I have been really worried about Dru's breathing and lack of eating. 

But getting ready to go was a production to say the least. 

I thought I was doing so well and put Dru's hair up in pigtails for the first time the night before so she would wake up without the snarls we usually face. 

Let's just say the pigtails didn't survive the night. 

Really no big deal, I'll just condition the heck out her hair and put a bow in and we're good. It just takes forever because she can't sit up very well and hates having her hair done. 

So as I'm speeding through getting myself ready, Dru is in her high chair in the other room with her brothers and pulls her NG tube out.

 Now this doesn't bother her at all. 

But taking the tape off her face sure does. She screamed like I have never heard before and didn't stop until her clothes were changed and her hair was done.

It was a long 10 minutes. And to top it off I cried too because the cute dress I wanted to put her in wouldn't fit over her swollen belly. 

It's a good thing she has lots of cute clothes. 

Once we are in the car, she is awesome. Better than my boys ever were as babies. 

So we do the usual blood lab then up to clinic.  Her bilirubin is going down so Dr. Jensen thought her score would go down. 

The wierd thing was that she has gained two pounds in two weeks even though she is eating way less ounces than she should. 

But one look at the size of her belly and he was pretty positive it was full of fluid (ascites). 

So we then went down to imaging for an ultrasound to confirm the fluid and then back up to the clinic. 

Sure enough, Dr Jensen was right. We are scheduled for a tap on her belly tomorrow to drain the fluid and then she is staying overnight so they can monitor her breathing too. 

I'm so relieved about the tap because it will give her some relief. 

As far as her eating--we are putting the NG tube back in tonight and she will get continual feeds for 20-22 hours a day. If she starts to not tolerate that, then IV feeds are next. 

And more good news-instead of her score going down, she jumped up another 3!!!

Her PELD score is now 28!!!

It's very strange that she is a very sick baby but Bill and I don't feel it as a burden. We are honestly so happy and calm and hopeful. 

Not saying we don't have our moments, but overall we are so blessed. 

We get to love Dru and receive the love she gives. Who could ask for more than that?