Weekly Update

Oh my goodness. I'm so embarrassed. It's been too long since I've updated, but here it is!!

I'll update on the twins first, and then show you about a million photos of miss L. The biggest problem when I slack off is that then these updates get super long! So sit back, relax and enjoy!

Since we last updated we've been back to see the cardiologist one more time. The diagnosis of HLHS was confirmed at that time and we found out the specifics about where we were going to deliver the twins. There are actually a couple of choices within a reasonable distance to our house that can perform the surgery, which is truly a blessing. In the end we would be able to deliver at one of the hospitals and at the other we'd have to deliver and have little B transferred. We decided that this would be sort of a nightmare for Brad and I trying to manage a two year old, a newborn and spend as much time with B as possible, so the choice was made to deliver at the hospital which is marginally closer to us.

After the hospital choice was made it was time to make some decisions about our doctors. The new hospital is far enough away that none of the doctors we were using previously service the new hospital. Luckily the cardiologist practice that we were in does have doctors that visit the new hospital, so we were able to transfer within the practice, but we needed to find a new perinatologist and OB to deliver the babies. We had our first appointment yesterday with the new peri, who will actually deliver the babies, so no need for a new OB (hooray!).

The practice was fantastic and the new peri was great! We did find out that baby B has some calcification on the left side of his heart and the endocardia (lining of the heart) is thickened. We're not sure what this means, but she did say that it was in line with the diagnosis of HLHS. We'll ask the cardiologist at our appointment next week. The best news of the appointment was that besides B's little heart everything else looked GREAT! Sweet baby W is doing great and they are both growing well. In fact they are measuring a week ahead and are the exact same size. It looks like all that eating is paying off!

The best news also led to the most shocking news, though. The new peri informed me that because the babies are measuring large and because it is so absolutely VITAL that we keep them in there as long as possible because little B really needs to weigh in over 6 pounds to have the best chances for surgery. She is worried that with two large babies that my body will eventually simply not be able to carry them any longer, and to avoid that time coming too quickly, she has put me on "house arrest" bedrest. Basically, I can park it on the couch or the bed, sit or lie down, get my meals, take a ten minute shower each day and go up and down the stairs once a day. It's going to be a challenge, but I am just going to try to make the most of it and read some books, scrapbook and watch some DVDs. My mom is coming (THANK GOODNESS) to help with L. I'm so sad that I won't be able to play with her the way she's used to but I'm already trying to come up with some activities that we can do. We're hoping to keep these babies growing another 12 weeks and that just seems like a long time to upset L's normal. We're going to get through it though, and we'll do whatever we can to make things as normal as possible.

...AND now onto the photos!

A couple of weeks ago Brad had a meeting in another city, so we took a road trip. The trip was a little longer than I had really thought it was going to be, but it was actually really fun and the change of scenery was really good. His meeting was on a college campus, and L discovered that college girls love cute two year olds. She used this to her advantage nearly the entire day we were there. We had checked out of our hotel room early and so we ended up napping in the car and doing some Christmas present research at target, but we mostly hung out on campus and L had the BEST time running and running and having fun.













Here she's found some leaves to throw:



...of course, soon it was back to running and making friends. She would say, "HELLO!" to everyone who would walk past.













She began playing peek-a-boo with people passing by. Too cute!!





My goodness, I can't believe she's so big!





...and finally, there was some serious dancing going on.







All in all, it was a GREAT day. The campus was gorgeous and we had a wonderful day.

The day after we got home L came down with a cold, but by last weekend she was feeling better, but still not ready to leave the house so she and daddy took the opportunity to carve a pumpkin.

At first, L seemed to be a little confused about what was going on, but she was definitely interested.



Who is shy? Not this girl, but that's a cute face!



Then daddy took the top off of the pumpkin...



...and L said, WHAT IS THAT STUFF IN THERE?!





She was not about to touch it, but decided she'd help scoop with a spoon.





Then daddy carved the face on.





Too cute!



No more sticky guts?



... and finally out on the porch!



L's all better now, although we're sort of house bound, but we've been enjoying our time in doing some crafts around the house.

(nevermind the bedhead, please!)

Tonight we painted pumpkins that we'd gotten on our visit to the farm when my parents were here last.





CHEESE!







She was really concentrating.



and somehow... her eye eventually got painted.





and somehow... the paint eventually got tasted, but apparently it's not very good.



But then it was back to work.



Here's a sample of some of her work this week:



See you next week!!

New Links

Hi everyone!

I wanted to draw your attention to a few new links on the blog site just in case you receive these updates through a feed reader. I have added a couple of blogs by moms of HLHS babies and a few informational sites as well. I hope that you find them as helpful as I have!

See you next week!

Weekly Update

I've lost count of how many weeks it's been since I posted! I promise to do better!

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!