Baby Claire's Blog: 1 Month Old

Today was Claire's 1 month birthday! She was doing a little better today, but has been battling some sickness and the liver cyst. It's been a frustrating few days for all of us trying to figure out what is going on with Claire and trying to "fix" it.

Claire has been through lots of labs, an ultrasound, a chest x-ray, and no food for the past 2 days. She has been under the weather but we hope she is getting better. We do ask that visitors are limited for a little while until Claire can catch back up to speed and start feeling like herself again.

The doctors think that she has some sort of viral infection. They are not sure what it is yet (and not really sure they will figure it out). But they are treating her with antibiotics just in case it is a bacterial infection. I have been really frustrated because we feel like her liver cyst has somewhat been ignored. They know it's there, but they don't really check it out as well as we would like by ultrasounds. But they finally did an US today and the cyst is back (probably has been back since it was last drained 2 weeks ago) and is a little bigger than it was then. The issue is that Claire is 1 lb heavier so when you look at her belly, it doesn't look as distended as it did last time. So her body is masking the cyst better visually.

We are working hard to try to keep the cyst at the front of the doctors' minds. I told the doctor tonight that Claire has cardiologists that check her heart at least once a day. She has their team that checks her overall stability every day. But there is no one who checks her liver cyst every day. The nurses measure her girth at each assessment and also feel her belly, but everyone is different and measures different. So it's not very reliable. They still don't have a real plan for the cyst yet. Just that she has to be a lot bigger to do any permanent fixes.

Sometimes I think the parent's instincts are much better than any text book diagnosis. They do seem to listen to us parents a lot of the time. I guess we are just a little more frustrated with some things since no one really seems to know what her cyst is and why it's there. The fear of the unknown is scary!

So we are praying for Claire's health and quick recovery; knowledge and understanding for the doctors, nurses, and us; and for God to continue to give us all strength.

Love,
The Scott Family