What a month. The year didn't exactly start out that great for our little household.
Right before Christmas we had our big 20 week ultrasound. We were so excited to find out whether or not our unborn baby would be a boy or a girl. Big brother was hoping for a boy (which I guess is quite normal for a 5 yr old.) Dwayne and I just wanted that healthy baby. And I think every parent who's expecting a baby don't care what it will be as long as it's healthy. And you kind of expect that nothing will be wrong with your baby - you assume that your doctor will say, baby is doing good and it's a boy/girl. Yay, and you are on your way home. That is how our first ultrasound went with our firstborn, but unfortunately was not the way it went with our second.
My ob, who has an ultrasound machine in her office, began the scan and happened to first thing look at the baby's privates. My ob kept asking Lucas (who was with us for the big reveal) if he could see what it was. Neither him or daddy could tell, but I had no problem telling. It was for sure a boy, and as soon as my ob confirmed it he peed. I laughed! Already had a little attitude. He measured on the bigger scale and everything looked great until she kept looking at his face. She was telling us that it looked like he had a cleft. She wasn't sure though, because he had his hands in front of his face and at different angles it looked like there could be a cleft and at another angle it looked fine. She wanted us to get it checked out at our local hospital since they had a better ultrasound machine. She called the hospital right away to see if we could come over that afternoon, because like she put it so we didn't have to worry all thru the holidays whether or not the baby had a cleft or not. The hospital was not able to squeeze us in, and now looking back, thank goodness they couldn't, because what they would have told us would have destroyed the holidays for us.
I was at first ok if the baby had a cleft. Like our ob said if a baby has to have a birth defect this would be the best one to have. But when we came home, and I started to think about it I had a breakdown and started bawling. I called my mom and was very shook up. It was supposed to be such a joyous occasion to tell her whether or not it was a boy or girl, but instead she had to listen to me being all upset about a potential cleft. At that moment is seemed like the end of the world, but now I wish that is all the health issues the baby would ever have.
After letting it sink in I was ok with it. I had come to the terms that it was just cosmetic and it was fixable. We had a great Christmas and New Years and like I kept telling myself maybe the baby didn't even have the cleft, because my ob was doubting it herself.
We scheduled the ultrasound at the hospital after the holidays, January 5th. Lucas had to come with us that day. He had started getting a fever the day before in school, so he was not allowed to go to school the next day. Considering the news we would get at the hospital it would have been best if Lucas hadn't been with us, but we don't really have anybody to watch him if we need some help.
Dwayne and I both knew that something was terrible wrong. The ultrasound technician and the doctor kept looking at his heart. I kept thinking to myself that they should just move on because we were just there to find out about a potential cleft.
The doctor sat down after he was done scanning the baby, and I don't remember much of what he said. I remember him mentioning a heart defect and he confirmed the baby had a cleft lip and palate. He said that when they see several birth defects they are worried about a more serious problem that can't be detected on an ultrasound. He talked about everything from surgeries and the baby maybe not being able to live. I sat there in shock. I could hear Dwayne next to me crying very softly. The doctor left us to ourselves, so we could gather our thoughts. When he left all Dwayne said is that this is bad, this is very bad. I then started bawling like a baby. I could not stop. The doctor came back in and explained that he would like for us to come back and meet with a childrens heart specialist and also perform an amnio on the baby. We wanted to come back as soon as possible to get more answers. We got it scheduled that we could come back the next day.
After the terrible news I just wanted to get out of there. I wanted to go back to our comfort zone. The rest of that day all I did was cry. I would stop here and there, but I couldn't let my mind wander and I would cry. I slept terrible that night. I woke up crying several times. It's amazing how much love you have for this unborn child you are carrying.
Luckily the next day, January 6th, Lucas was able to return to school. He knew, we were going back to the hospital, and when we dropped him off at school he started crying. He said, he didn't want to go to school. I think, he was worried about us. He had seen how upset we had been all day, and I don't think he wanted to leave us.
We returned to the hospital, or what I like to refer to, the place who gave us those awful news. First we met with a genetic counselor. She was great. She explained everything about the amnio, what to expect, how the procedure works and what complications there could be. She gave us a little lecture about chromosomes. That was quite interesting. She said that just because the baby has a cleft and heart defect doesn't mean, he would have any other serious issues. In fact the mouth and heart was created from the same tissue - interesting. That was really uplifting for us to hear, a very positive conversation. We signed to have the amnio done (even though I was a nervous wreck about having a needle inserted into my belly with no numbing medication).
The amnio is a quick procedure. Only takes about a couple of minutes. After meeting with the counselor we were called back into the ultrasound room where we got the dreaded news the day before. The doctor came in (he was super cool, he liked my ugg boots- haha.) At first he just scanned to see how the baby was laying. He wanted to of course avoid hitting the baby with the needle. But he also preferred to avoid the placenta, even though he said it was ok if we had to go thru the placenta.
I did not look at anything they did after they had prepped me. They covered me up and painted me with something that would keep the germs away. Cannot remember what it's called. After that I closed my eyes and pretended to be on a beach with an ice cold beer. (It didn't work too well for me). What only helped a little was that Dwayne was right next to me squeezing and rubbing my hand. It hurt and I could feel the doctor turning that needle around to avoid baby and placenta. But they got what they needed, and the doctor missed the baby and placenta, so that was great.
I was told not to lift a finger the rest of the day. Just to go home and watch movies or read a good book, and I was ok to return to crazy life the next day. But before we went home we met the children's heart specialist. And what a great doctor he is. He scanned the baby and afterwards he took us into an office to talk with us. First he said that it was correct that the baby in fact did have a heart defect, but he then quickly added that we could breathe, because it was fixable. What a sigh of relief I think both Dwayne and I breathed. I wanted to jump up and hug him.
The problem with our baby is that his main arterie is there, but just very narrow and it should take two surgeries to fix it. He also explained, the probably very short version of, how the heart functions. He had a nice little picture he drew and wrote on. He however wanted us to come to his office, because he had an even better ultrasound machine that only looks at the heart and not the rest of the baby. He wanted to be sure of what he saw was accurate.
We left that day very positive. Positive that our baby could be "fixed", and all we had to wait for now for a couple of weeks was the results from the amnio.
A few days later, January 10th we went to the heart specialist's office. He did in fact confirm that the baby has the arterie, but it is just narrow. So the baby needs a surgery before he goes home. Dwayne and I thought he would be rushed off to surgery as soon as he would be born. Luckily we found out that that is not the case. After he is born the doctors stabilizes the baby. They can give him medicine which will keep his blood flowing. When he is stabilized we get to bond with him. Hold him, get to spend time with him. He stays with me until I'm discharged. After I'm discharged he goes to one of the best children's hospital in the country where he will have his first surgery. He will only have to stay in the hospital for a few days, and he gets to go home with us. His second and hopefully final heart surgery should occur before he's even 1 yr old.
We still have to meet with the plastic surgeon. I'm curious to hear how and when they will fix the baby's cleft and palate.
I've had to switch ob. Since I have to deliver at a different hospital with a better NICU, my own ob is out. I have to see a high risk ob. That stinks, I was really hoping my ob would deliver this baby as well. I've been with her for so many years, and now I have to get to know a new doctor. Oh well, whatever is best for the baby.
We'll also have more of an audience when the baby is born (oh joy). There has to be more specialists presents.
We got the results back from the amnio. Luckily the baby don't have down or any of the trisomies. He does however have a small deletion of his chromosome 22. This small deletion is the cause behind his cleft and heart defect. And that possibly the baby is also missing one of his kidneys (which we found out about at one of our recent ultrasounds). He could have other issues - medical but also learning disabilities. But we can't get more answers now until he is born and starts growing.
This whole pregnancy has all of sudden changed from a normal progressing pregnancy to a high risk pregnancy with tons of doctor appointments, ultrasounds, new doctors etc. But it is all so worth it for this little guy, who I feel kicking so much every single day. There is so many people who is rooting for this little guy, and that want him to do well and get better. I can't wait to meet him and hold him and tell him how much I love him. (But first he needs to fatten up so he's ready for his big challenge). But both Dwayne and I appreciate everyone thoughts and prayers. We are truly thankful!
