Friday, September 26, 2008

Berkeley's Funny Faces

No fancy story this time. Just a lot of ridiculous faces from Berkeley. We're going to schedule some more tests for her next doctor visit to determine if, in fact, she is a claymation.

Monday, September 22, 2008

Matters of the Heart

Well, we managed to get too busy at the end of the week and haven't had a chance to update you all on Berkeley's heart.  We had our first visit to the Heart Center for Children at Medical City, Dallas, last Wednesday.  The doctors there were great.  It's been very encouraging to meet the folks who will help us take care of Berkeley's health as she grows, from our own pediatrician to the many specialists that we're starting to meet.  God is really taking care of us with great doctors and resources in that regard.

Anyway, you don't care about our doctors.  You want to know how Berkeley's heart is.  So here we go.  We knew when Berkeley was less than a day old that she had at least a partial hole in her heart that had a chance to be "complete", which is just another way of saying that there's a hole all the way through a wall inside her heart.  We also knew that this could possibly just grow and heal itself over time or that it might require surgery to repair.  The appointment this past week filled in a lot of grey areas for us and answered a lot of questions.

First, yes Berkeley's heart has a "complete" hole from one side to the other.  Here's a picture to help illustrate what's going on inside her heart:  

In the picture, you can see the left side and right side of the heart, separated by a wall of muscular tissue.  You can also see two valves leading from these chambers of the heart on up into the arteries.  In Berkeley's heart, the wall of tissue is not fully formed, leaving a large opening between the two sides of her heart.  As a result, those two separate valves you see in this picture, are actually one large common valve in her heart.  We got to see all of this on a sonogram of her heart and watch it pump.  It was pretty amazing.  

Now, before anyone gets worried that her heart is just going to stop or anything like that, let's explain a few things.  First, her heart is in no greater risk than yours or mine of suddenly stopping.  That is to say, it could happen to any of us, but this condition doesn't necessarily make that any more likely.  If her heart began to have problems, it would be a progressive failure over time, caused by simply having to work harder to keep up.  There would be signs that this is happening, and there would be ways to correct it.  The main thing that you look out for in a condition like this is the oxygen levels of the blood.  Berkeley's heart is allowing the oxygenated blood coming in from the lungs to mix with the unoxygenated blood that's returning to the heart from the rest of the body.  However, testing showed her blood oxygen levels at 100%.  That is oustanding!

So what's the next step?  Well, it was determined that surgery is absolutely what Berkeley needs to repair her heart.  The hole will be repaired partly with Berkeley's own tissue and partly with a synthetic Dacron fabric.  The heart tissue will grow around this fabric as she grows, and it will never need to be replaced or have a bigger piece put in  (I asked the doctors about that just for you).  The second part of the surgical repair is to take that one common valve her heart has formed, and gently form that back into the two separate valves.  

All of this will be done sometime just after Christmas, once Berkeley is a little chunkier.  Let's be honest, we're ALL a little chunkier after the holidays, so that makes it a good time for this.  Anyway, her surgery will be done at Medical City, Dallas, by a specialist who only does heart surgeries on infants and children.  He's one of the best that there is, and I'm very much looking forward to meeting him and peppering him with questions about the heart surgery.  I'm sure he'll be able to tell us a lot more and give us some nifty visual aids, like the heart diagram I posted above.

In between now and surgery time, we'll be going back to the Heart Center for Children once a month for them to check Berkeley out and look at a sonogram of her heart.  We're taking the same approach to this that we did with the Down Syndrome.  This is simply part of the path God has laid out for Berkeley (and us), and we're just taking it as it comes.  I don't think we're too worried about it, and we're trusting God to continue to hold Berkeley's heart in His hands and to help her heal.  If any of you have any questions or want to know more (or if you need more visual aids), feel free to ask.  I think the more we talk about this, the more we are forced to educate ourselves, and that is a good thing.  We'll keep updating the blog on the heart as we learn more, so that will be probably at about a monthly interval, based on our appointment schedule with the Heart Center.

Sunday, September 14, 2008

Exactly what He wants...

Question: What is the chief end of man?
Answer: To glorify God and enjoy Him forever.

As I was rereading this entry in a devotional book by A.W. Tozer, the words struck me in a new way. I knew that we were created to give God glory, but I never thought about the fact that God made ALL things for His pleasure...exactly how HE wants them.

The devotional book cited this verse from Revelation 4:11 -
"Thou art worthy, O Lord, to receive glory and honor and power: for Thou has created all things, and for Thy pleasure they are and were created."

We don't have to do anything special to make God love us. He made us, and through that alone we are automatically pleasing to Him. Berkeley might be a little different from other kids, but she is exactly what God wants her to be...His.




On a lighter note, we were a bit shocked today when Brighton spelled out her first word with magnetic letters. The fact that she randomly picked letters that formed a real word was surprising enough, but if you look carefully at the picture, you'll see why we were really shocked! We usually sound out the words that we create, but we opted to keep quiet on this one!

Saturday, September 13, 2008

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.
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Wednesday, September 10, 2008

Dads (and Bears) Don't Stand a Chance

The evolution of the human child from Homo Diaperus to Homo Pottytrainediens is a bizzarre process to witness. Some days, kids seem to want nothing more than to sit on their potty for three hours until something happens. Other days, you'll beg them to use their potty, they'll swear they don't need to go, and then two seconds later they'll inform you of the need for a fresh diaper on their hindparts. Brighton's personal favorite way to break this news to us is "Pee pee, I forgot!" or the more alarming version: "Poo poo, I forgot!"

Well, we had made some progress in this area, but since the arrival of Berkeley who is also a diaper-demolisher, Brighton seems to have lost some ground here. "I forgot!" is heard much more frequently. And then we have incidents like this past week, where "forgot" is even forgotten and all sorts of calamity ensues. Up until this point, nothing I've written has a thing to do with the post title or the image for this post. This is called setting the stage. Here we go.

So Brighton had just finished up a particularly glorious bath in our big master bathroom tub. No bath would be complete, of course, without the proper assortment of toys, inflatables, and old plastic ballpark cups used for sharing the bathwater with the rest of the bathroom. And of course, the bears have to be there to supervise. Brighton doesn't do very many things without the assistance of Pink Bear and/or Big Bear. Big Bear is the happy fella in the tea party picture with Brighton just up there to the right. He is definitely one of her favorites. Well, on this particular bath day, Big Bear was sitting on the step up to our tub, just beside where Brighton's potty had been situated (I had put it there earlier in the day, and it seemed wise to have it accessible right after a bath, as that's a common time for Brighton to have need of such a device). And all was right with the world. And then the bath ended.

This is the part where the memory of what occured begins to go into a Matrix-like slow motion version of itself. I was sitting at the chair in my office, office door half open, straight visual shot across the hallway through the open master bedroom door and through the open shutter-style doorway into the master bathroom. My view gives me a shot of of about half of the sink area between the bathtub on the left and the shower area on the right. Julie, who is assisting Big Bear in the supervision of the bath, shuts off the water and informs Brighton that it's time to get out and dry off. This goes smoothly. And then I hear Julie make a surprised shrieking sound and say something to the effect of "Brightonbrightonbrightonwhatareyoudoing!" Assuming the worst (that Brighton has slipped and fallen), I jump up and make the few quick strides across to where the action is unfolding. Brighton had not fallen. She wasn't hurt in any way at all. But Big Bear had fallen on hard times.

You see, when Brighton exited the tub, she realized she needed to pee. Good thing the potty was right there, ready to be used, right? Nope (or "Nopes" as Brighton says). Instead, she strikes a pretty decent shortstop pose, feet apart, knees slightly bent, rear pushed out a little so she can lean her face forward. And then she proceeds to just mark her territory all over poor Big Bear. That's no way to treat your stuffed buddies. So Big Bear had an evening of cleaning and washing and drying ahead of him. While Julie took Big Bear and started his detox process, I attempted to use the moment to reinforce some potty training advice with Brighton. Here's how that conversation went:

Me: Brighton, did you just pee? (great question, Dad)
B: ummm, yes
Me: Where is the pee pee supposed to go?
B: in the potty
Me: Where did you pee pee?
B: umm, on Big Bear
Me: Do you see the problem here?
B: ........
B: I love you, daddy.

At this point, all teaching and discipline is over. How does a dad deal with that??? The kid is two years old and already has reached a point where she has me totally beaten by a look and a line and has her bears living in fear of being peed on. Oh, to be two and rule the world again.
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Tuesday, September 2, 2008

Flying Solo!

As Brighton told Grammy G today, "Daddy at work. Make monies." That means that Sean's back to work, my Mom is back in Arkansas, and we're finding out if I can handle our two girls by myself.

Besides wearing our pajamas until 2pm, I think it's gone pretty well. We've all been fed at least once, Brighton has read the insurance manual to Berkeley, and we've talked to both Grammies on the phone.

Now both girls are asleep. Brighton is wearing her princess nightgown and slippers, getting her "beauty sleep" inside of her "castle" (a tent-like playhouse that Sean put over her bed). Our girls are so precious, and I'm so happy to be their Mom!

That's all for now...I'm new at this!

Loving this,