Difficult news...praying for the best!

Baby W was chit-chatting with us during our ultrasound, moving his lips all over the place! It is so fun to see him moving around in there, because I don't always feel him. I have been feeling him way more often though, which is so great! I love to feel him rolling around, getting hiccups (just once) and getting a tiny nudge here and there. He is sitting SO low right now! I have just started to have some sciatic pain, which is not fun at all! I guess I can't complain though, because I have had a pretty perfect pregnancy.

We saw Dr. R. yesterday, and he gave us the news that we o-so-didn't want to hear. Baby W's 'achondroplasia' diagnosis has been changed to a type of dwarfism called 'thanatophoric dysplasia' (which I will now just refer to as "TD"). TD is lethal in 90-95% of cases in the first few days of life. The pictures that we have really help explain it a little better.

The picture above is from Baby W's back side. His head is on the right, stomach/bum on the left. As you can see, his ribs (toward the right) are 'bowing in'. They should be more of an oval shape.

The picture above is just of baby W's mid-section. You can see the white lines on each side of him in a slight "S" shape, these are his ribs 'bowing' in, instead of out. In an average child, the baby's more of an oval shape than our little man. His stomach and head continue to grow as they should, as well as all of his organs. Unfortunately, his heart and lungs are located in the upper part of his body, within the ribs. They are also able to continue to grow, but the area that they take up is not able to house them as they get larger. Right now, I am breathing for Baby W. He is not using his lungs at all, so this doesn't pose a huge problem until he is born and tries to breath. There is no room for his lungs to expand and breath for himself. From what we understand, he should be okay until birth (at this point in time) and at that time they will try their best to assist him in his breathing. They can only inflate his lungs so far without the pressure from the ribs working against the doctors, therefore having the lungs burst. Hopefully Baby W will keep his ribs large enough to house his lungs without problems.

Baby W did show some growth, which we were very happy to see. If we see the growth stop, there is a chance that we would deliver Baby W in just 5 weeks from now. If he continues to grow, at 36 weeks, which is 9 weeks from now, we will decide whether to deliver or continue until 40 weeks. It all depends on what he decides to do in there.

We are praying to beat the odds and make it into the 5% of survival cases, but know that whatever happens we can be with our little man again after this life. Keep him in your prayers!

Cherish

Cody's sister and her family sent me a package today...I think I cried for 5 minutes after opening it. This small necklace means more to me than I can ever express. I know I will cherish it for the rest of my life! What an amazing reminder of staying positive, no matter what challenges you may be facing. Thank you, Thank you, Thank you!

Come What May and Love it

Well, where to begin. I just keep thinking, "I want to go to Holland! Let us go to Holland!" (If you are not sure what I am talking about, read this post.) In the past 6 weeks a lot has changed for us. We went from expecting an average height baby to a little person. This, at first was a big shock. After the first few weeks we stopped worrying about the fact that our Baby W was going to be a little person. We started to worry about his development; but after our second ultrasound, everything looked great with Baby W and that put some of our fears at ease.

This week we had our third appointment with Dr. R., our perinatologist. I hate to admit it, but I was dreading it. I never knew what maternal instinct was, but now I am very familiar with it! All morning (which was better than weeks before the first ultrasound), I was super nervous and just didn't really want to go. Time passes too quickly when you aren't really looking forward to something, doesn't it?!

We began the ultrasound...which, by the way, is MUCH better in a perinatologist's office! All of the tech's that we have had are amazing, they just zip around so quickly compared to ones in a normal doc's office. Sorry, that was random! The tech measured everything, and Baby W sure was looking cute! I felt like he looked a little bit longer at the ultrasound, so that was fun. He had both his arms up under his chin like he was posing for a picture...he is already practicing for me! Ha! The tech did all of the measurements, then Dr. R. came in. Right when he came in, she showed him all of the measurements and looked a little concerned. He said something to the tech asking about if "that measurement is really that small". He went on to show us that his top two ribs on each side are starting to be concave. They are growing in, instead of in a "C" shape like they should be. Of course, I lost it a little. This is why we are going to our ultrasounds, this is all that Dr. R. is really looking for each time we visit, because it can be fatal for our little man. He measures everything else but is only really concerned about the shape of his abdominal cavity. Obviously, the abdominal cavity houses all of our organs. If Baby W's organs continue to grow(which we obviously want) but his ribs cannot house the organs, he won't make it. Dr. R. said that Baby W can still survive with just 2 ribs starting to grow incorrectly, but that he will have some difficulties. He didn't tell us what, I think because he saw how overwhelmed I was with seeing EXACTLY what we didn't want to happen start happening in our precious Baby W. He did tell us that this CAN effect ONLY the top portion of the ribs, but that he cannot tell us if that will be Baby W's case. It may continue to progress and all of the ribs will grow incorrectly, or it may stick to just those two. We want TWO! We want TWO! Optimism is key, right?!!

Dr. R. also said that Baby W is a little small. He has to guess the baby's weight because in a normal pregnancy, the baby's weight is estimated by measuring the length of his femur. Obviously, Baby W's femur is not the same as other children's, so Dr.'s simply have to guess. He guessed that Baby W was probably 14 oz., which is small. We are not sure how small, but then again, we aren't sure of much.

Next he asked if I was feeling Baby W move. I DON'T KNOW! It sounds so stupid, but maybe because it is my first pregnancy I can't really tell. Last Saturday I felt some fluttering for about 10 minutes, then on Tuesday I felt a quick punch, as well as on Thursday. They were so quick that I am not positive though, part of me thinks that I am just making it up! Dr. R. said that he was seeing "a little movement" but that if I don't feel baby W move he wants me to come see him. Hmmm...I don't think I am really feeling him move ever, so does that mean I can go see Dr. R. every day!? Ha. Anyway, moral of the story, Baby W needs to start moving around in there so we don't have to worry so much about him...come on Baby!

I don't know if I can explain how I am feeling, mainly because we don't know what is going to happen. Part of me wants to be completely optimistic that Baby W will make it here just fine, that somehow this will all be inaccurate, that we can still go to Holland, and just have a healthy little person. (Okay, I am sure, if he is not healthy, that it will just be South Africa, and we will re-adjust, just like we changed our plans from Italy to Holland!) Then, the other part of me is doom and gloom. I don't want to lose our Baby W. I don't want him to be hurting. I don't want to feel the pain of losing a child. I don't want to face the challenges ahead of us.

I don't know how we could go through this without a knowledge of our Lord. A leader in our church, Joseph B. Wirthlin, said this,

"If we approach adversities wisely, our hardest times can be times of greatest growth, which in turn can lead toward times of greatest happiness {...} Come what may, and love it."

I know that we will need to remind ourselves of this each day, and that some days will be much harder than others. But I also know that if we can do this, if we can pray for comfort and understanding, that we can get through this.

To be honest, I am not really 'worried' about what is going to happen in the future. I am extremely anxious to know what is going to happen, but not worried. I know that we will be able to handle whatever is put in front of us. Whether that be a healthy little boy, a little boy who needs lots of assistance and surgeries, or that we are not able to be with this little boy here on this earth. I know that no matter what happens, we get to be together for all eternity! What an amazing blessing that is to know. I know that if we continue to rely on the Lord that he will help us with whatever trials come our way. We are so thankful for all of the prayers that are being said for our family, and want you to keep them coming! We know that the power of prayer is beyond anything that we can imagine. Prayer can make miracles, and can also send comfort. We will take either! A miracle would be ideal! However, we know that comfort may be what we need, and we will keep the motto, "Come What May and Love It."