Happy Birthday

Happy Birthday to my sweet baby girl. July 5 was Skyleighs birthday, I can't believe its been a year. The day after the fourth last year I remember calling the doctor and going to the hospital. When I got to the hospital I was dilated to a 3, since we were doing a c-section it was go time. Being prepped for surgery was so hard, it was the final moment. The time I was going to be with her. My mom thought it was funny because I actually walked into surgery, I didn't feel like I needed to be wheeled over. It was pretty weird while laying on the table that just on the other side of a blue sheet my body was cut open. When the doctor broke my water it went everywhere, up my back, all over the floor,and all over the doctor and probably everyone else in the room. They had all the neonatal team in there just waiting for Skyleighs arrival. It happened and the neonatologist confirmed our fears. She wasnt going to be able to get the oxygen that she needed. Since we had decided for TLC care only they would not be giving her oxygen by other means. We just wanted her to be comfortable. I only got to see her for a few seconds before they took her out of the surgical suite. They still had to suture me up. I remember feeling like I was going to pass out, by blood pressure had dropped a great amount. Skyleigh had already passed by the time I got out of surgery. I was very sad because I never got to her hold her in my arms while she was alive, but I did get the joy of having her for almost 10 months. While in recovery Brian got to give her a bath and the neonatal nurses were so great they took lots of pics! We got to hold her and love on her for about five or six hours and we took a ton of pictures of our little angel. That was our only chance, we would never get to be with her ever again but her memory will never leave us.
A year later...of course we are better but our lives will never be the same. We are thankful that she didnt have to suffer here on earth. We hope her heavenly body is everything that she didn't have here. I wish I could see her smile and learn new things everyday, she is truly missed and will always be a missing part of my heart.

I love you always and forever.

I know this blog skipped ahead a lot from my last one but this is really whats on my mind since her birthday just passed.

Last little note: Hug your children often because you never know when your last chance will be.

It's even harder when you miss someone that wont' be coming back

In the next couple of weeks my amniotic fluid just kept increasing and increasing to a point that was not only becoming very uncomfortable (my back was killing me, to the point it hurt to walk)but was also a cause for concern. The weight and size of my uterus could cause a false feeling of being full term and cause me to start dilating too soon. I was only about 33 weeks at the time and we really wanted to try to prolong things if we could. After talking with the doctors I decided that I would have some of the fluid removed. To put a little perspective on things I asked one of the ladies that did my sonograms what a typical amount of fluid was and she said about 7-11 cm, I had 48cm when I went in to have some of my fluid removed. So the day we decided to have the fluid removed the doctor told me go home and then go the hospital at 6 and we will remove it tonight. So here we go, I was not expecting it to happen that night but I guess it was better than waiting. Getting the water drained was like having an amniocentesis but they take off a lot more fluid. I was attached to machines that monitored my contractions because that was one of things we had watch while having the fluid drained. With a sono going the whole time so they could make sure they didn't poke Skyleigh, they gave me a local and then inserted the larger needle they would use to draw off the fluid. They drew it off 300cc at time and the doctors and residents had to take turns drawing it out. In the mean while I started having slight contractions but they weren't too bad until after they were done. It took a couple of hours from start to finish and they ended up taking out what totaled to about 10cm of fluid. I had been having so much back pain before the procedure, but now that I was having contractions the pain was insane. On a pain scale from 1-10 it was definitely a ten. I could not get into a comfortable position. After some medicine and what seemed like an eternity the contractions had stopped and I got to go home. My back was still in so much pain I could barely walk. After a day or so of recovery I felt much better and with the fluid decrease I was able to get around much better. We weren't really in the clear. Another problem with having fluid drained is that it will come back, the doctor said that babies get used to a certain amount of water so they usually just produce more. We just had to hope that it wouldn't come back too fast.

March of Dimes

The March of Dimes walk was yesterday and we had a great team. Next year we are going to sign up earlier so we can raise more money!! Skyleigh had a banner on the memory mile and that was so special! I can't wait for them to mail it to me so that we can put it in our front yard!! Its getting so close to her birthday and I can't believe that we have been without her for almost a year. We miss you a lot and can't wait to kiss you again someday!!

continued....

In the next few weeks all I could do was replay what the doctor had told us over and over in my head. Of course I jumped on the Internet and tried to read all the information I could. On my birthday, April 11, 2009, I was searching the Internet and I came across a blog of little boy that had achondroplasia. I began reading his story and it brought a little bit of peace to my heart. I was thinking we can do this, it will be okay. I showed Brian the blog and told him that it really made me feel better and it did him too. At that time we still did not have a definite diagnosis and in my heart I was hoping that if it had to be skeletal dysplasia that I would probably want it to be this kind, it's not nearly as life threatening as some.
So after a week or so of starting to feel okay about her diagnosis. That it surely would turn out to be okay and she would just be a little person but she would get to be with us. We would get to see her smile and play. It was time for us to go for another sono and at this point they said they would be able to make a more accurate diagnosis. So we go into this praying that it will be okay. That we will get to have our baby girl. I am laying there watching the screen as they take the measurements. I was about 25 weeks and her body parts were only averaging the length of about 17 wks and her head was measuring about 28 wks. Which is a big sign of skeletal dysplasia. They also checked her chest measurements again and they had not changed for the better. This was not what I wanted to see on the screen. I was really hoping that they would say oops we were wrong about the whole thing. Unfortunately that was not the case. The doctor told us that she could not be 100% because we were diagnosing her in utero but that she thought Skyleigh had thanatophoric dysplasia (TD). Which I had also done my research on, I think I was a little over prepared. TD is the most common lethal skeletal dysplasia. Lethal, that word would not leave my mind. There are only a few cases where the baby survived. So my hopes were gone again, ripped up and stomped on. So now what are we supposed to do, are we just waiting for our baby to die. It's was still surreal. I cried until I was dry. The only plan we had at this point was to keep coming for sonos to make sure she didn't get fluid in her chest and to just watch her and make sure she wasn't in distress.
After a few weeks we went back for another sono, that's going to become a popular word in this blog because we had a lot of them. I am thankful for the sonos because I got to see Skyleigh and got to take home a ton of pictures. I was about 28 weeks at this point. They did all the routine measurements. It generally took awhile because Skyleigh was a busy body!! The only big difference at this point was that they noticed my water had increase substantially. She had her own swimming pool. Now that gave me something else to have to watch for, she told me that babies that have problems tend to produce more water. She said that they would monitor it and if it got to be too much fluid they could possibly drain the fluid but that we would cross that bridge when we got there.

Skyleigh's Journey

To start from the beginning I found out I was pregnant November 2008 and I was 5 weeks. Besides being very sick everything seemed to be normal. Just like most couples we were really ready for the 20 week sono so that we could find out if we were having a boy or a girl. So finally after what seemed like forever we finally got to schedule that sono. The day was March 5th 2009 when we found out that we were having a baby girl and were very excited. We already had our name picked out, Skyleigh. Immediately following the sono we went to see the ob and in that appointment he told us that they were not able to get good measurements on some of her body. He told us that he wanted us to a specialist and that he would schedule and appt for the following week. My stomach sank, everyone was waiting to see what we were having and now we had to deliver the news that they were going to have to check her measurements again and that something could be wrong. Everyone tried to ensure us that everything would be ok but I was terrified. Brian tried to be positive and tell me not to worry, he was just trying to be strong for me because I was so worried.
So the next week comes and we are sitting in the office at Texas Tech waiting not so very patiently for my name to be called and finally the time comes. The nurse that talks to us gets all of our family background and also tells about the different markers that they look at when diagnosing a problem. As soon as she left the room I started to cry, I couldn't believe this was really happening. We go in to the sono room and they start taking measurements of Skyleighs head, femur, chest, etc. They measured everything. After the sono the doctor comes in to talk to us and she informs us that Skyleigh has skeletal dysplasia, but it is too early to tell which kind it might be but she feared it was going to be one of the more lethal skeletal dysplasias. She said that the ratio of her chest to her heart was one of the big determining factors. At this point her heart was taking up over 50% of her chest because her chest was so small therefore it would not allow her lungs to fully develop.
At this point I was so overwhelmed I was not expecting any of this conversation to ever happen. My mind was jumping back and forth thinking how are we going to make the work if she does live and if she doesn't how will I ever make it through. All of my joy was gone. We didn't want to lose our sweet little girl that we already loved so much.
After the appointment we shared the news with our parents, grandparents, and siblings. It was the hardest news to share.

This could be interesting!

Given everything I have been through in the past year and all that I have learned, I figured I would write it all in a blog. I found other peoples blogs that I read that were similar situations to mine really helped me get through and I hope I can do the same for others. I am definitely not an English major so please for me....

A little about me for those of you who read this that don't me:
My name is Meagan, I am 25, and I live in Texas. I am a radiation therapist, I love my job. I have a great family. I am engaged to my best friend and we have been through one heck of a year.

I am going to try to start at the beginning with Skyleigh's story but please forgive me if I ramble. As I start typing the memories just start flowing and I am afraid sometimes my thoughts don't make since. Hopefully as time goes on I will get better at blogging, ha, I feel so out of date. I mean doesn't everyone have a blog now a days.

I just hope that I can touch someone that is or has been in a similar situation as mine. I also want to thank everyone out there that had inspired me to write this blog.