Thursday, September 6, 2007

update with Natalie's condition

Natalie is, as most of you know, nearing towards being 4 months old and 3 weeks. Already!!! Originally, by this time she was supposed to have the "BT shunt" (the temporary shunt to help out her heart so her blue and red blood don't mix) ..but she never needed it! She's been doing THAT well. Until these past few days where the rough hours started. Or for what we thought was rough. All of that is nothing compared to what we're expecting the next month. But, it'll all be for the best..because that's when Natalie will get better. Today, her pulsox (oxygen level) was 91%!!!!! That's incredible. Absolutely incredible. Yesterday at the pediatrician's it was jumping all around, so it is a fact now that their pulsox machine there is broken. And her 83% reading for Tuesday is now being called "inaccurate". Which, again, is amazing. It was rough thinking it was true, but god, this is some really good news. AND..the purple spells that she's been having, where her hands, legs mostly, and lips look purple? is actually way expected now and the cardiologists today are very very sure that it doesn't mean (because of her stats) that she's in danger. It just means that she's starting to show her illness at times. And if the spells get worse to take action but it's expected that they won't get any worse..mostly just an indication to keep her warm, keep her happy, and not worry unless something happens that would indicate otherwise. The doctors at Hopkins are absolutely in awe of her. As they put it, it's rare for babies like Natalie to skip the "BT shunt" altogether because they don't need it.
So, here's the deal. At Hopkins, the surgeons and cardiac doctors get together and have roundtable discussions of every patient before acting upon what anyone want to do. Any real next step towards surgery and prepping Natalie for surgery has to go through for some serious approval. There's a procedure called "catheterization" . Here's a great definition:

Cardiac Catheterization (cardiac cath) is a procedure that helps doctors see how well your heart is working. Doctors insert a thin, hollow tube called a catheter into an artery in your arm or leg which leads to your heart. The catheter in this image is used to deliver dye that will show up on an X-ray (contrast dye) to visualize the coronary arteries.

There's about a 70% chance she won't have to get this procedure done ... and again, that is because her heart is coping so well. But if she does get it, chances are she'll do just fine. She will have to under anethesia for it which scares us, but there's no other way to do it, so we'll deal.
So! an echocardiogram of Natalie's heart was done today! Here's the most fantastic news of all; the whole/VSD that is the murmur part of her condition, is the same exact size that it's been. The very loud "shooshing" sound you here when trying to listen to her lungs is actually normal and again, expected. Her heart is growing larger with her body, as well as all of her arteries, which is great. Which means even more how ready and strong her body is becoming for open heart surgery. So, her growth spurts are not hurting her heart. *phew* THAT IS AWESOME. This was like our biggest fear. And she's gaining weight beautifully. She'll never be the "michelin baby" but James was never that chubby either. lol I won't lie though, i wish I could breastfeed her because THAT would get her huge. But, that's okay. ;)
So, the surgery date! No exact day is set, but it will happen in mid-October at latest. Possibly a week before the first week. Or that second Monday morning. Again, we'll find out more. The surgeon will follow up with Natalie's file and speak with us in person beforehand. We're pretty excited about that. So, that's the good news! Everyone has been so amazing ..sending good vibes and praying and everything. Just know, IT ALL WORKS. We know for sure that it's because of everyone who loves and cares about Natalie that is helping keep her strong and so healthy, despite her condition. Thank you so much everyone!!!!


twolinesonastick said...

I had two cardiac caths- one at four months I think and another when I was two. They were talking about doing another one around age ten but never did it. I have vague memories of the one when I was two- well not the acutal catheter, but having gauze bandages on the insides of my legs like where my underwear line was. I remember only because I had just been potty trained and it took a lot of help from mom to pee without getting those bandages wet. My mom said she was really nervous about the cath but it turned out to be a piece of cake. And that was in 1981, so I'm sure it's even better now :) Please know that I am praying for Natalie, and for strength and courage for you all!

CaesMom2002 said...

Sounds like you're getting more information now then before. It's awesome that they're communicating with you more openly at least.
As always, my love, prayers, and thoughts are with you guys!!

Kristin said...

I'm so glad to hear she's doing so well & continues to grow! We're still thinking about you all over here :)

eipwek said...

Yay! It's so awesome that her body is coping well and she is doing great as she grows! I'll be thinking and praying for you!

Dawn B said...

Thank you so much everyone!!!! We have quite a tough little girl here. lol It's so cool. We seriously couldn't ask for any better. Everyday we keep saying how lucky we are. lol Thank you thank you!!!! =)

Dawn B said...

oh I meant to mention something to
I hope you know how much better you made us feel about the catheterization!!! I talk about you to Ricky from time to time and even he agreed how cool it is that we found you on being a wonderful example of how chd babies grow up to be healthy. Well, a healthy mom with a beyond adorable baby. Thank you so much for keeping in contact with us, too. =) =)