November 29, 2013


In the short 2 1/2 weeks of Adilene's life we have been to the doctor or hospital more than I would have liked.  It all started the day after she was born.  Friday, November 8th her Bili level was a little high and so she was put on photothearpy in the hospital.  She was in the nursery unless she needed to eat and that was the only time I got to see her.  Saturday the 9th we were able to come home.  Tuesday the 12th we went to the pediatrician for the first time, I knew it was coming and so I wasn't that surprised that we needed to check her Bili level again.  The shock of that appointment was she developed a murmur and we needed to go see a cardiologist the next day.  Her Bili was high also and so she needed to be put on a Bili blanket at home.

On the 13th at the cardiologist she got and EKG and and Echo done.  They found 3 holes in her heart, but all are small enough that we are just going to wait and see if they will close on their own.  We will go back in a few months to check them again.  While were were there we learned that her Bili level that we had checked that morning was getting higher and so she needed to be admitted into the Children's hospital.  This was another shock, I was more worried about Blaiden at this point than Adilene because I knew this would solve her problem.  I just had a hard time being away from Blaiden so much.

 While in the hospital Adilene had to be poked a ton.  This was the hardest part because she was not bleeding very well and so getting any blood from her was a big deal.  We had to put off a blood test that she needed because there was just no way that they could get the amount of blood they needed (and it was only about 3ml).

The 15th we went back to the pediatrician to check in and make sure she was still getting better and didn't need to go back to the hospital, she looked great!  We also went back on the 22nd to check her weight gain.  She weighed in at 6lbs and is doing great.

Today the plan is to head up to Children's Hospital to get the blood test done that we couldn't on the 13th.  It shouldn't be bad as long as Adilene is cooperating, she will bleed more, and they can find a vein easily. 

All of this seems like a lot but really it hasn't been that bad.  The first week was a little stressful but Fred could take off work, we had friends that helped with Blaiden, and my mom came to help too.  I knew that there would be health concerns when we found out she had Down Syndrome and my only hope was that we didn't need to go into surgery right away.  I just didn't know if Adilene or myself could handle that.  We are in the clear so far and I don't see any reason why that would be changing.  All of the issues that Adilene has had are all fairly common and although they happened to her with Down Syndrome they could just as easily be found in a child without Down Syndrome.  Overall she is doing wonderful and her diagnosis has not affected her at all. 
This is a picture that a friend sent me while she was watching Blaiden one morning while Fred had to be at work.  I think he was having a good time!

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