Sunday, August 31, 2008

The Nursery Begins

We decided to use our smaller upstairs room as the nursery. It is perfect baby room size. Only problem was it was originally painted dark chocolate brown by the people who built the house. It will definitely need three coats of primer. Too bad for Chris that the primer has big warning labels for pregnant women all over the front of the can! I braved the fumes for a few minutes to take some photos of his handy work though. Notice the look of total love and devotion he has in that second photo!


Friday, August 29, 2008

A Name...

Chris and I have pretty much decided on a name. Chris really wanted the first name and I really wanted ANYTHING else. But I gave into him and in exchange I got to pick the middle name and I get to decorate the nursery! So the most likely baby name is:

Samuel Conor Wimberly (Sam for short)

It's growing on us.


Wednesday, August 27, 2008

Amnio Results

I called and got our Amniocentesis results today...they are NORMAL!! Amnios look for any genetic and chromosomal problems with the baby. The MD wanted one done because heart conditions are apparently related to genetic problems. Thankfully for us, we have a totally NORMAL baby with a heart condition. That means we get to concentrate on this heart and fixing it and not worry about any other problems that could have existed. Good news for sure.


Wednesday, August 20, 2008

More Waiting

We finally received the appointment schedule for the fetal cardiologist. We will see him OCTOBER 3!! That is forever away!! We see the high risk doctor again right after the cardiologist appointment. We saw our regular OB this morning and had our usual 5 minute appointment to check the heart rate and check my BP and weight. His heart rate was 150 which is weight, however, was RIDICULOUS.

So we continue our wait to hear more news on what we face in December. Until then, I do have an uplifting story to share. On Thursday, the day after we found out about the heart defect, Chris and I both received a 'sign'...if you believe in those sort of things.

I went to work, and was struggling with my new patient. He had a stroke that knocked out his cognitive abilities...I mean this guy takes his clothes off, has to be restrained to the bed, grabs at non existent's bad. He also had hardly spoken since being admitted. After an hour of struggling to get him to do ANYTHING in physical therapy, he turned to me and said "Sometimes God just gives you things and you just have to deal with it." I about fell off my chair.

Chris told me later that he woke up that morning and turned on the TV. The channel was already on CNN, and the story in progress was of Olympic gold metal swimmer Rebecca Soni. She had broken the world record for the 200 meter back stroke and won gold. The part of the story that meant the most to him was that she had done this after just having open heart surgery two years ago.

We know that we have a long way to go, and that many sad days may be ahead of us, but we also know that God doesn't give us more than we can handle. We are keeping the faith, and falling in love with our little special delivery...who kicks his mother constantly!

Wednesday, August 13, 2008

Bad News

We went to the perinatal specialist today. He specializes in general high risk pregnancies. His ultrasound tech did a great job with the US and got us some great profile shots and spent a lot of time explaining everything she was doing and looking at. It was pretty obvious though that she saw something wrong with the heart, since she got pretty quiet and spent about 15 minutes taking photos from every angle. She left and got the MD who did his own US look at the heart. Without telling us anything he said I'm going to review what we have seen and I'll be back to tell you what I have found.

After a good long wait he finally came back and told us it didn't look too good. The baby has Hypoplastic Right Heart Syndrome. It is really rare and can be really bad. He gave us a lot of anatomy review, but the basic thing to understand is that that right side of the heart is super small and that it's size is not compatible with life after birth unless there are open heart surgeries done.

What we are looking at is a planned birth at a pediatric hospital in Atlanta, where specialists there will likely perform the first of three open heart surgeries around 3 months of age. Two other heart surgeries will follow before he is 3-5 years old. The surgeries are meant to make the left side of the heart function as both the left and right side. Because of this, there is no guarantee of long term survival, since this will essentially double stress the left side. Every surgery has its own mortality rate, with the highest mortality being the first surgery.

Having said all of those bad things, there is some hope. Apparently the majority of babies born with this defect have NO right side to their heart. In our case, there is a right ventricle (although it is small) and it does appear to be functioning (although not at full capacity). If this turns out to be the case, then the surgeries wont be as severe, and will have much better outcomes for long term prognosis, since the left side of the heart wont need to be as stressed.

To give the doctors the best chance of diagnosing and fixing the defect, the MD suggested an amniocentesis to be sure no other conditions exist. We did the amnio (which hurt like hell) and now we are waiting for the results (two weeks). After we get the results we will begin consultation with a fetal cardiac specialist (probably in about 4 weeks). Until then, we will just proceed like anyone else would...plan a nursery, pray a lot, and prepare to spoil the crap out of this kid.

Please keep us in your prayers as we begin this long road. We are fine, shaken but fine. Whether it all ends tomorrow or 20 years from now, we will love him unconditionally (and it is a he...we had her double check!).


Monday, August 11, 2008

And the baby is a.....

Before I tell you what the baby IS, let me tell you (or rant to you) about our ultrasound.

We went to our US today at 5pm. The US tech performed the US, and she took all kinds of measurements on the baby. She explained that all the measurements gave a due date, and that she would average the due dates and then give us a more accurate, specific due date. Then, all of the sudden, the tech tells us "ok, let me go get your doctor"....

Well naturally at 5pm our doctor has gone home for the day. The tech proceeds to tell us that there seems to be a problem with the heart. She explained that she believes one side of the heart (the right) is smaller than the left side. But the heart is working fine, all the parts and pieces are there, she just thought the size was wrong. So Chris asked her what that means. Then she proceeds to tell us that it could mean any number of things, but what jumps out to her is Down's Syndrome. (Now, a former professor of mine would probably have jumped down her throat about her diagnosing ANYTHING because her job is not is far out of her 'scope of practice' so technically she should have never said what she did. She should have just told us about the abnormality and that she would schedule us for a specialist).

She THEN proceeds to tell me that there was a test that they could have had done earlier that would have shown us for sure, but that I had turned it down because my insurance wouldn't pay for it. I almost slapped the lady. OF COURSE I didn't pay for it...because I don't CARE if the baby has Down's, we are going to keep the baby! AND THEN I explained to her that I DID pay for another test (quad 4 screen) that gives the same results although it is slightly less accurate (it is like 75-80% accurate) and that THOSE results came back normal. THEN she acted like she hadn't even looked in my chart to see that I had that particular test done OR what the outcome was.

She then started wiping the gel up and turning off the machine......without telling us the sex. So I promptly asked, and the baby is quite obviously a BOY!!!

But, this US tech didn't stop upsetting us the rest of the visit....she forgot to give us photos until the VERY last second, when she ripped the last three photos off and handed them to us...and they were probably the worst three of the whole set. One of them I'm not even going to scan into the computer because it looks like NOTHING although she said it was feet. AND THEN she didn't even give us that more specific due date she had talked about.

So all in all we are happy about the boy, but made about the US in general. We aren't mad about the results regarding the heart...we are mad at the US tech for being so unprofessional and pretty much ruining our idea of how ultrasounds are supposed to go. We could care less about the heart situation. We are going to love this little boy no matter what is wrong.

After all of that, we finally got to tell our parents the sex. For both sides of the family, we called our little sisters first (remember them, the ones that found out dead last that we were pregnant?). Well we told each of them first, and then told the rest of our I guess we are all even now!

Look for another update soon...hopefully we will talk to our specialist very soon! Until then, just say a prayer and be happy like we are that we have a little boy to look forward to! Enjoy the US photos!! The first is of the face and belly (you can actually see the two dark circles under the face are the uneven heart spaces that the lady was talking about) The second is the money shot...if you will....