It's amazing how life can change abruptly and completely in an instant, isn't it?
First, I want to offer an update on the twins and share some news we received this past week. Part of the joy of having twins is having the opportunity for many many ultrasounds. We get to see the babies every three weeks or so and it's so fun to see how they are growing and changing. We now know that we're having two boys! We've decided on names and are already loving baby B and baby W.
This past week we went in for our level II ultrasound. This is the big ultrasound that almost every pregnant woman has at some point during her pregnancy even if it is uncomplicated. The ultrasound began as very routine and we were loving seeing our boys. When the perinatologist was reviewing our ultrasound, however, it became clear that something was wrong. The doctor reviewed the pictures over and over and kept looking at little baby B (who is actually baby A, by the way). He explained to us that he was fairly certain that baby B had a severe heart defect. Baby W (formerly known as baby B - how is that for confusing?) looks great, completely healthy, but baby B's heart had not developed properly. He was concerned that he couldn't get a complete look at B's heart because of his position in the womb, but was confident in saying that he believed that B suffers from a condition known as Hypoplastic Left Heart Syndrome (HLHS). Basically, the left side of B's heart is not properly developed and will not function properly. The doctor wanted us to see a pediatric cardiologist for a fetal echo and confirmation of the diagnosis immediately and made the necessary appointments to get us in right away.
We visited the pediatric cardiologist two days later at the earliest appointment we could get. The cardiologist worked for more than three hours to try to get a good look at B's heart. He told us that he could see that certainly his aorta is small and the left ventricle is small, both of which are consistent with the HLHS diagnosis. He told us that most likely we are dealing with HLHS, but he wants to wait two weeks to confirm the diagnosis for certain. Because B is located more to my interior and down inside my pelvis, it's hard to see him as clearly as they would like. The doctor thinks that in two weeks he'll be enough bigger and enough closer to the surface to see very clearly and to confirm the diagnosis for sure.
The diagnosis is devastating and there is no cure for HLHS. The good news is that there is treatment for the condition. There is a three stage surgery that can be performed which will change B's heart from being a two sided, four chamber heart, to being a single sided, two chamber heart. There are only a few hospitals in the country where this surgery can be performed and we are blessed enough to live closeby one of them. We are naturally concerned because the outcome is not certain for our precious boy, but we are hopeful.
At this point both babies are safe in their home. As long as B is tucked away inside of me, my heart and lungs can do the work that he needs to live. After birth, however, he will be preparing for surgery within days of his arrival to save his life. Our main objective at this point is to get the twins to the point of being large enough and stable enough at birth for the best possible outcome for B's surgery. Our goal is to make it to six pounds. This is a little above average for most twins, who are generally born a little early, but I can help the process by making sure to eat, eat, eat and to drink water and rest. I am working hard at those things and Brad is being an amazing father and helpmate to me. He is not only entertaining L and keeping her occupied and stimulated, he's also basically running the house at this point by himself. I always knew I picked a good one!! :o)
In the future, I will most likely be put on bedrest to simply prevent premature labor, but for now it's not necessary.
So... please pray for us. Pray that this pregnancy goes on as long as is possible and B is large enough for surgery when he is born. Pray for peace for all of us. Pray for healing and that no other health issues remain to be uncovered. AND pray that we are going to know how to manage three children under three when one is going to be going through all of this. We need all the prayers we can get right now.
I also want to say thank you to everyone who has emailed us, called us and shown us support over these past few days. It's been a roller coaster of emotions and feelings and I know I haven't been able to respond to everyone individually. We are truly grateful for your support.
If anyone wants anymore information about the condition, you can read here to understand a little more about what HLHS is. My cousin Amy had a beautiful baby boy last year with the condition and you can read about his story on her blog here.
So... that's been occupying our minds and thoughts for the past few days, but it's been FOREVER since I updated this thing so you know I have more for you. L is a busy girl and I've got the photos to prove it.
Way back when we visited the local fire station with our mom's group that L and I actively participate with. It was a blast and L had a great time checking out the fire trucks and everything else.
Here's mister M checking out his snacks:
Here are some of the mommies and kids that attended that day:
AND of course... L sporting her fancy fire hat:
After that Mawmaw and Pawpaw came for a visit. We love having them around and L is STILL talking about it a few weeks later. She loves to point at the passenger seat next to her and say, "Pawpaw sit" because indeed that is where he sat!
During their visit last year we went to the pumpkin patch/farm and so we had to go back this year. Last year Brad missed out and ended up having to work while we went, but this year he decided to come home a bit early so we could all go together.
There were plenty of pumpkins around (and apparently, plenty of exit signs!).
The first thing that L saw was a giant mountain of hay (straw? I know one of you reading this knows the difference...). She and Pawpaw scaled the mountain and got right to the top and had a little rest.
Of course, what good is climbing a mountain if you can't jump off?
L loves her Pawpaw so much in no small part due to the fact that he's always willing to do fun things together.
After the hay/straw mountain we found some sleepy pigs. Last year L was not that interested in the animals there at the farm, but this year she could not get enough!
L sat in a giant chair with her daddy.
AND we saw a sweet little cow having some dinner.
As soon as L saw the cows she ran up to the fence and shouted, "MOOOOOOOOOO!" Nobody answered though...
We also saw bunnies, chicks and some just born piggies with their mama who were also having their dinner (awwww!).
After the animals it was time to check out the slides. L and her daddy rode almost all of them including the super big giant one not pictured here!
It was an awesome time!
We also took a (late) belly shot this evening. Here I am at 20 weeks, feeling large and in charge and knowing that it's only getting bigger from here!
We'll be having lots of doctors visits between all our specialists (one a week on average) and we'll continue to update everyone as we know more. See you next week!
No comments:
Post a Comment