Isla's Medical Fund

Friday, June 7, 2013

Bitter Sweet Day of News

Today was the day that we were going up to Riverside to see an old friend, Buffy. She is an ultrasound technician at Baby's First Photos and we just wanted to get a closer look at her cleft to see if we could get a better idea as to what we are looking at. After doing so much research online, a cleft is not just a comes in so many shapes, forms and sizes. Was it going to be a unilateral cleft lip only, or would it be a unilateral cleft lip and palate? Or would it be a bilateral lip...or (in my eyes) the worst case, which would be a bilateral cleft lip and palate. Here's a visual for you guys....
As we're driving up there, my minds going a million miles a minute wondering about what she's going to look like and hoping for the best case scenario possible. Then all of a sudden my phone rings and it's the doctor with Isla's amnio results. After she took the time to explain to me everything that was tested for (none of them good), she gave me the news that everything came back normal!! Yay! What a relief!! Now we knew that all we were dealing with is a deformity that is totally correctable! Our daughter is going to be able to live a (somewhat) normal life :) The rest of the way up there I stopped worrying so much as to what she was going to look like because I was so happy about the news I just got.

We arrived at the place, a little early and was greeted by Buffy...also pregnant, but you couldn't even tell under her scrubs, she looked great! (B&*, just kidding). We started the ultrasound and Isla did not want to cooperate! She really made Buffy work to get some shots of her lip. We did get a lot of this though...
Definitely her fathers
Buffy did a great job making me lie on my side, flip over, get on all fours and jump around so that we could try and get Isla to move into a position that we could see her little face. Whatever she made me do, worked. She zoomed in and you can see it plain as was, what I thought to be, the worst case scenario...a complete bilateral cleft lip and cleft palate.

The picture above shows her yawning...she's laying on her side, so the top of her mouth, closest to the nose is on the right...and there it is. Two slits that go from the mouth all the way up to her nose, making it look almost as if she has a beak...this is the palate. Below is a good picture of the cleft (bad pic of the rest of her face) in 3D and you can really see the lip good.
 Here's a better one of her face below
I don't know if I made a sad face or maybe it was my silence, but Buffy asked if she was giving me more bad news. Although the news isn't the least now we know exactly what we are dealing with and we'll be able to be fully prepared for her birth, and the long first year of surgeries. This was the most informative thing I could have done to date, and I highly recommend doing this for anyone who may one day face the same challenges we are about to go through.
So all in was a very bitter sweet day. GREAT that Isla's brain and chromosomes are normal, but also very sad that she won't be even close to the "perfect looking" baby that everyone dreams about. This isn't going to make her any less loved, or beautiful in our eyes...but we created her and it is now our job to fix her. And that's exactly what we are going to do. So now that most of the "unknowns" are now's time to start looking for the best cleft lip and palate team that is out there. If anyone has any recommendations, please let me know and I will definitely look into them.
Just so you all know...we have decided to put this out there for everyone to read, not because we want your sympathy or for people to feel bad for us...but more so to create awareness so that when Isla does get here, we aren't going to hear so many "Oh, I'm soo sorry", or so many strange looks. We want people to know that it's OK to ask questions about it and not treat the cleft like it's a big elephant in the room.  She will be a just as healthy, beautiful and normal as the next child. Here are some pics that I have found online that have given me strength to know that everything will in fact be just fine....our technology is soo advanced these days, thank God!

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