A Better Day

Last night I continued my search on hypoplastic left heart syndrome and after reading more about it, it seem to put my mind more at ease. I had a more calm feeling about the ordeal and had a change of thought about how things will turn out. I want to try to look at this in a more positive light. I know that it is going to tough, and I am sure that my thoughts will take another turn at some point, but for now I will try to stay in a good state of mind. We haven't even talked to the pediatric cardiologist or genectics physicians, so who knows exactly what to expect. I do want to thank all of you for your encouraging words and prayers. It really means a lot.

As for Kaden, well he is having a pretty good day. I am not feeling so good, so I am not as fun to play with and daddy is working over time today. Kaden is pretty good at keeping himself entertained, but he definately knows how to get my attenion when he gets bored. We have been working hard at getting him to walk. He is doing extremely well. At school he has to walk around quite a bit...so I think that helps. He requires less and less support each day. He is even getting to a point where he can stand on his own for a moment. He gets a little scared and reaches out which causes him to lose his balance, but he'll get there. Today was kind of funny for me...Kaden has one of those magnetic writing boards and he enjoys having us write words on it. Well, today we went through colors, animals, and he started doing body parts. He points to a body part that he wants us to spell. He started running out of body parts and thought for a moment and then grabbed his armpit. I started laughing and wrote it for him. Well the next thing he grabbed for had me rolling on the floor. He has never been one of those "adventerous" little boys who grabs himself while getting his diaper changed, so it was a total shock when that is exactly what he did. I tried asking him if he wanted me to write diaper, nope that wasn't it. So me being one of those mom's who give it a kiddy name wrote out "pee pee." I was kind of at a loss of words at the time. He accepted it though!!! Well, daddy just called and we are headed to Wal-Mart when he gets home, so I better get Kaden's things together. I figured out my camera, so I will try to post pictures later.

Here's the deal...

I received a lot of phone calls from friends and family yesterday, wanting to know what was going on with Ava. I will try to explain it as best as I can, however, I am not a doctor so hopefully it's pretty accurate. Well, as you may have read in the previous post Ava has been diagnosed with several things, the main thing being hypoplastic left heart syndrome. After reading about it on the internet I have learned that this basically means that there are several abnormalities in the heart and main blood vessels. This happens during pregnancy within the first 8 weeks of development. One of the most dangerous defect of this is that the left ventricle is very underdeveloped. In a healthy heart the left ventricle is normally very strong and muscular so it is able to pump the blood to the body. Being underdeveloped, the body will not be provided enough blood flow. Treatment for this syndrome is either numerous surgeries beginning right after birth up to 18 months or later, the second option being a heart transplant. After reading about things the baby will endure after birth, it takes me back to Kaden's birth and hospital stay. The articles described babies being on the ventilator, numerous IV's, arterial lines, chest tubes, just things that a baby shouldn't have to put through.

That is just one of the many abnormalities the doctor diagnoised Ava with. Another being a complex heart anomaly, suggestive of large Atrioventricular Sepect Defect. This basically means that the heart did not divide into the four chambers a healthy heart has. The doctor also stated that he did not see an aortic arch. What I have found about the aortic arch missing is that there is no way for the body to receive red blood leaving the heart. As you may guess, this is very dangerous. Ava's palates to her skull are not develping right or in other words not fusing together right. Her head is mearsuring bigger and more round than a normal baby at this stage.

I don't understand why this would happen again. I have tried to think of all the reasons and I just can't seem to make sense of it. Don't get me wrong, I would never trade Kaden for another baby, and I am thankful God trusted us enough to put him into our lives. I know and have heard numerous times that God does not give you more than you can handle, which means Nate and I must be stronger than we really think we are. After reading about all the different findings with Ava, I think she is definately going to have to be a miracle baby. I try to have good thoughts, but it is hard. I think she is going to be a really, really sick baby, and after watching Kaden go through all that he has been through and knowing how sick he was (which I think she will be a little more than that), it just doesn't leave you with too much hope. I know that Kaden is a miracle and that miracles happen, that and God is all you can really hold on to.

Another thing that really has been bothering me is what to do when she is born...meaning with her and with Kaden. I have never been away from Kaden for more than a day, but I can't imagine leaving Ava at the hospital on her own. Being that she will be born during cold and flu season and RSV season, it would not be safe to bring Kaden up to KC and risk him getting ill. What do I do? And what if she is in the hospital for a long period of time. I am working full time now, I would quit except that now, unlike before with Kaden, we have more responsibilities. We purchased a lot in hopes of building a house...I have a feeling that is not going to go so well. I know that we will figure it out, but thinking about it all now is very overwhelming. The thing that gets to me the worst is the seperation. I know that I could go down there for a day and then back home for a day...but financially that doesn't seem too realistic. Maybe we should just move to KC : ). That would be the easiest, but Nate might end up in the hospital with high blood pressure issues from all the horrible traffic : ). I know I am rambling , and I know that it will be hard, but we will come up with a solution. Please continue to pray for Ava. Thank you all for all your thoughts and prayers.

It's a Girl!!!, but we need your prayers

Yesterday we found out that Kaden is going to be a big brother to a little sister. However, we also found out some not so good news and had to see a specialist today in Topeka. We were told that she has hypoplastic left heart syndrome, her palates are not forming right in her skull, she is missing a vessel cord in her umbilical cord (which doesn't seem to be that big of a problem right now), she has bilateral pleural effusions, they did not see an aortic arch, and she has a complex heart anomaly suggestive of large AVSD. You might be wondering what all this might mean...well, we aren't too sure right now either. The doctor did talk to us, but when you are in shock, it's hard to follow along. We are going to look all of this up and put it into more understandable language later. We have decided to talk to the genetic physicians to see if it is something related to us, with having Kaden and all.

What they did tell us is that she will have a 50/50 chance for survival in the womb, and that mortality is high after birth. She will have to go through several operations. We plan on going to Children's Mercy again. I don't know how it will work out for us though, now that we have Kaden. When it was just Kaden, I was able to stay up there with him 24/7, well now Kaden will be home and I will want to be with him, but at the same time be at the hospital with her. It will be hard but I am sure we will come up with something. Living two hours away, there is no way driving back and forth will work. I jsut can not believe this is happening again. It gets very frustrating and all you can think is what the first baby went through and hope that it will be easier. The way the doctor talked, I don't think it will be. I hope she is as strong as her brother. God has his plan and we can only go by it. One good thing is that we have already gone through this so it is not new territory. We know the nurses in the NICU and feel relieved knowing that they will be taking care of her.

So.....in case any of you were wondering we are naming her....Ava Rae. Please pray for Ava. Thank you so much and I will be more specific in the next blog, I have to get over this feeling of disbelief first.

Our Day In Kansas City

Today Nate, Kaden and I made a trip to KC to speak at a conference about premature and medically challenged infants and toddlers. I believe every year they invite a family to speak and this year it happened to be us. Kaden was definately the center of attention (not that it was anything new for him). He enjoyed getting the crowd to laugh, he even showed everyone how to dance, I must add he is a FABULOUS dancer. He is not a big fan of an audience clapping, he even cried when he heard it right before we went on...however after the dance he started clapping leading to the audience clapping and he just ate it up. I wish I brought my video camera. He was such a little ham. On the way home Nate and I went over some of things we discussed at the conference. Then he started making fun of me...why you might ask. It is because of all these hormones raging inside of me. We were asked what we were hoping for, for Kaden's future. Ok, so I started crying while I was talking about it...it's allowed, I am a mom!!! When we got back into town we took a trip to Wal-Mart, Kaden was showing us everything he wanted...and I mean everything. I had to let him know that Santa would be here soon and that he needed to talk to him. He did make it out of there with some new bath toys though.

Kaden has learned a new word to spell on his leap frog magnet toy. "Boo." What perfect timing. The other day he put the three letters into their slot and it replied back to him as "boo." All of a sudden I hear him trying to get my attention and when I look over he began pointing at the word and then covered his eyes as if playing peek-a-boo. I am telling you, this boy will find a way to let you know what he is thinking. Nate and I definately love to brag about what a genious we have. Well, anyway...he is showing everyone that he comes in contact with the new word he has learned. Maybe he will teach the new baby somethings.

I know that I have promised this in the past...but one day I will find a way to post pictures again. I have been so busy lately with everything I am finding it hard to keep up with things. One day.....