Isla's Medical Fund

Friday, June 21, 2013

Future Plans

So, since the last update, both Randy and I have been doing as much research as humanly possible to find the best surgeon/cleft team out there. Not at easy as it may seem.... For one thing, every doctor and/or hospital has a different approach. We've found that pretty much anyone can "fix" Isla so that she'll be able to lead a "normal" life...but it's making it look good that's a whole different story. So from an aesthetic point of view, there are only a handful of surgeons to choose from and of course we want Isla to have the best possible surgeon out there.

There are so many different things to decide...NAM or no NAM, Lathem or no Lathem, when to start surgery (one doctor will do surgery as early as 2 weeks of life, while others want to wait all the way until they are 6+ months...and then there is everything in between), nose stents or no nose stents, it goes on and on. But what's to say that one way is better than the the other? I guess it all depends on the individual child as to what route you should go...but unfortunately no one practices everything, so it's up to us as parents to decide the best methods for our children. By FAR the hardest decision  and one the most important decisions that we are going to make for Isla's life. After all...the first surgery is going to set the  precedence for the rest of her life, and we are hoping to make the right decision that will actually minimize the possibilities for future surgeries.

We've spoken with doctors all across the nation and have narrowed it down to two local(ish) hospitals. Either Rady's in San Diego, or Children's LA. We still have yet to meet with them in person, but this will come within the next few weeks, so hopefully we'll have a decision by August as to where we will be spending the majority of our first year. But I'm very confident in the two surgeons that we will be meeting with (along with their cleft teams)...their work is absolutely amazing and by the time these children are one year old, the only way you can tell that they were born with a cleft is because you are looking for it. Otherwise, you would never know.

Whichever decision we make...we know it will be the right one, and we'll explain why we made that decision once it's made. The one thing that we do know is that Isla's first year is going to be very challenging and as most of you know, Randy and I were planning on getting married in May of next year. With all the surgeries and unknowns that we are going to face throughout the year, we've decided to cancel our wedding and put all of our focus on our new little addition and our growing family. We are still going to be getting married, just no wedding. We're not sure of the exact date, but we're actually planning on doing it before Isla get's here :) SOO EXCITING. So stay tuned for the date, because we are going to be having a celebratory dinner/BBQ for all those that would like to be a part of our special day.

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!

Thursday, June 6, 2013

Isla's Ticker

Today was the day for our fetal echo ultrasound so that we could find out whether our not Isla has a heart condition associated with her cleft... and it felt like one of the longest days of my life. Hurry up and wait should be the slogan of the day.

It started out like every other day...get up, get ready, get Gemma to daycare and then off to work. Our appointment was in San Bernardino (about an hour away) at 11:30, so we decided to leave town at 10am. Those three hours at work felt more like three days. I show up to my moms work a little before 10 (she was going with me because Randy had to work) and waited for her to be ready to leave, then we drove an hour, just to wait for another hour in the doctors lobby. See...hurry up and wait.

Finally the nurse calls my name and takes us back... now it's 12:30. She stats the ultrasound, just like any other, but all they are looking  is the heart. The technician that was conducting the ultrasound would make a hmmm sound and then write some  on a piece of paper, so I asked her if she something bad. Her response was, "the doctor will have to go over the results with you." Talk about torture!! I wanted to tell her, " Come on lady...give me a little more than an ohh or awe or hmmm, this my baby your keeping secrets about." But I didn't and just laid there patiently as she  finished the test. The good news was  we were going to get the results as soon as the Dr reviewed the tape, so no having to wait another 2 weeks for results (still didn't make the next 20 minutes  any less painfully excruciating...again, hurry up and wait).

Finally...the Dr!!! He  came in, asked me a few questions, sat down and started reviewing the tape. As he was very quietly going over everything (it was so quiet in the room that if you dropped a pin, everyone in the room would have stopped and looked) the nurse opened up a box of tissues and put them on the table next to me. Now I thought I was sure...Isla is going to have a heart issue... now I'm just waiting for the Dr to tell me how bad. They really need to train their nurses better because once the Dr stopped reviewing everything he looked at me and said... "your babies heart is perfectly fine". OMG what a relief!!! He went on to tell me how her heart is exactly where a baby at that gestational age should be. F that nurse for (in my eyes) intentionally trying to torture me some more, but Hallelujah, phew, thank you baby Jesus, God, the universe and everything else larger than us out there!!! Although we are not fully in the clear yet (still have to get  the amnio report back) now that we know her heart is healthy, chances that she has a chromosome missing drastically reduces!!!

Tomorrow we go for the 4d ultrasound,  so hopefully we get a better idea of how bad, or not bad  cleft is.