Berkeley's Medical Update

**Note: Just read the last paragraph if you only want highlights**

Okay, Julie and I know that many of you are curious about how Berkeley is doing and what all we're learning about the specific medical challenges that she might face and some of the hurdles that she's already cleared. So we're going to try to sum up about everything we know at this point and get everyone up to speed. Berkeley is now 18 days old, and it's been a pretty busy two and a half weeks for her (and us).

First, with Downs there is always an increased chance to have a few problems with certain organs and systems. Apparently the heart and kidneys are among the more commonly affected organs, so Berkeley had renal and cardiac checkups within her first 24 hours of breathing air. Her kidneys checked out great. Her heart showed a murmur being caused by a malformed or immature A/V valve on the right side. I called Auto-Zone, and they do not carry this part, so we've got an appointment this week with the Heart Center for Children in Dallas. Incidentally, this condition appears in a lot of children whether they have Downs or not. Sometimes it heals on its own, and sometimes it requires surgery. We'll have to wait until we meet the good folks at the Heart Center for Children before we know what to expect there.

Oh, also during Berkeley's first 24 hours, it became apparent that she had a pretty good case of jaundice going. Her bilirubin count was high, but more concerning was the rate at which it was continuing to climb. Yet again, Downs children seem to be at a higher risk for jaundice in the first few weeks, so we had to monitor this closely and go back to Charlton Methodist and Children's Hospital of Dallas for a couple of outpatient blood samples over the first few days that we had Berkeley home. She showed remarkable progress within the first two days of being home. Apparently just some home cooking and a nice spot in the basinet by a big back window did the trick. If you're keeping score, that's Kidneys and Liver (bilirubin and jaundice are related to the liver) okay, Heart still possibly an issue. Two out of three so far ... we aren't complaining. :)

The next hurdle we had/have to clear is the hearing test. Berkeley was unable to pass the test at the hospital before we brought her home due to still having some fluid in her ears from the whole birth experience. Most babies with Downs have smaller ear canals, and it can take a bit longer to drain out that fluid. They scheduled us to come back for the test, but when we returned, Berkeley had picked up some congestion (probably got a little bit of Brighton's cold last week). If an infant is congested, the test won't work properly, so we're still waiting to clear this hurdle. Berkeley had a tentative appointment for tomorrow morning, but we called and postponed it while ago because she still has a bit of congestion. We'll keep trying on the hearing test as soon as she's got a clear nose and throat again. We have found out that impaired hearing is a common trait of Downs, so we'll be prepared in case it turns out that there's more than just snot keeping Berkeley from passing the test, but we're still praying for her little ears. So I guess our tally now is Kidneys and Liver okay, Heart and Ears still possibly an issue. Still no complaining here.

Next up .... we had Berkeley's two-week checkup this past Wednesday. I told a friend at work that right now it feels like we know we're in a mine field and we're just sweeping to see where the mines are. This past visit was a good first shot at finding out what all we face. Our pediatrician, who is awesome by the way - she even has made a few personal calls on the weekend and after hours to check in with us - gave us a few additional things to watch out for. One, Berkeley hadn't been keeping her weight on very well. They put us on a strict feeding schedule with her, and after the first day of feeding her 3 oz every 3 hrs Berkeley had put on another 3 oz of body weight. That's a good thing. She's doing well in this department now. Another one for the win column.

Our pediatrician did say, though, that she was going to go ahead and refer us to Scottish Rites Hospital for Children in Dallas to have Berkeley's two short fingers and her hips looked at. If you didn't know, Berkeley has two short fingers on her left hand. We call it her "Rock Concert Hand" or her "I Love You Hand" because it looks like the sign language symbol for I love you. Anyway, Scottish Rites specializes in bone and muscle conditions and might be able to give us more information about those two short fingers. The hips are probably not a concern, but since Berkeley is so tiny our doctor just wanted to have specialists do a better examination than she was able to do at her office. She gave us a bit of information, and based on what she said and on Berkeley's ability to stretch her legs all the way out (usually when she's loading a diaper), we think things are going to be fine with the hips.

Okay, so that's about everything we know at this point. We are just beginning our tour of some of the greatest kids' hospitals and clinics in Dallas, so we'll know more soon, but for now this should catch everyone up. The highlights are that we need to find out what to expect with her heart and with her ears/hearing. And Scottish Rites should be able to tell us if there is anything else we'll need to prepare for with her hips and fingers. Overall, though, her general health really is amazingly good. She's pretty much just like Brighton was at this stage, starting to spend more time awake and looking around, starting to move her head around pretty good, and really blowing through some diapers. I still don't know how something so heinous can come from something so sweet and cute. Anyway, seriously, she's doing very, very well, and we are thankful to God every day for her good health and apparent progress in so many areas. We'll keep you all posted on the heart, ears, hips, and fingers. Those are four good things for you to pray for when you think of Berkeley, especially the heart. Stay tuned.