A prayer request

I do not post reguarly, and I do not know who checks anymore, but if you are out there, please pray for our friend Caroline Busby. She is a sweet little girl that turned 1 last month. She was born with the congenital heart defects that we thought that Blair was going to have. She underwent open heart surgery when she was only 1 week old in February of last year. She did great and has done so well until today. All that I know, at this point, is that she had a seizure earlier today and was flown to Egelston. She is apparently in heart failure and is in critical condition. Please, please pray for her and her family. Thank you.

Just another quick update

Blair continues to do so well. He is almost 17 lbs. He is still such a happy little guy. He loves to giggle and loves it when others laugh with him.
He already looks so big to me. He is finding a little independence, and he makes it known when he needs his space. Even though I would like to keep him a baby forever, I can already see that he is not going to go for that! He can wiggle with the best of them when he is done being held. He is sitting by himself, and he loves to reach for anything so I think that crawling will be soon.

We have been back to some of his specialists and things continue to improve. We saw his pulmonologist, and he was very positive about Blair's progress. AND, he has told us that soon we need to start getting out more. We have been waiting for this time since he was born, and we are so grateful that it is finally here. We have started to do a few things. He has been to his first birthday party. His cousin turned 3, and we went to his party. Blair was amazed at all of the stuff, the lights, the noise and all of the other little people. He loved it. He has also been to his first play date, and again, he loved the newness of it and loved being around other babies.

As I said before, we (especially me) have been looking forward to the time when we could get out of this house and do more for so long, and I am so excited, but the crazy thing is that I am also scared. Fear is terrible. It can and usually does paralyze me. It keeps me from doing and being all that I should do or be. I have realized how fearful I can be since Blair was born, and I am working on it. I do not want to be afraid that Blair will get sick and end up in the hospital. I do not want to be afraid of the procedures that he will have to undergo in the future. I do not want to be afraid that his progress will slow down or stop, BUT I do fear those things and more. I try to keep it in perspective and to push those fears out when they creep into my head. As usual, I am learning so much from other people- Friends who have been there before me and are going through it now. I hope that I will follow their leads. I hope that I will always be grateful for the day that I am living and that I will always celebrate every single day of Blair's life without getting bogged down in the fear.

We head back to the cardiologist in February, and I will update after that appointment.

The babysitter called......

This is the first time that we left Blair and his babysitter called to tell us to come home. Ok- we don't leave him much at all, and she has actually called once before, but we were already on the way home. This is the first time that I actually heard the phone ring, picked it up and then heard the loud screaming on the other end. Yikes! Scary for a minute, but then I quickly realized, IT IS HIS TEETH! Those sharp little guys hurt.

By the time we made it home, his little face was red and splotchy from all of the crying, and it took some time for us to get him settled down. Our sweet babysitter, Audrey, who sees Blair every week because she helps me 2 days a week said "I think that he actually knew that y'all were not here tonight." Oh no!! That breaks my heart. Only yesterday when I left the house after Audrey got here I saw those sweet big brown eyes of Blair look at me like "hey where are you going." I love that he knows me AND misses me, but it also makes me feel so sad to think about him missing me and/or his daddy, and I am only talking about a couple of hours at the most. Boy, do I have a long way to go........

Happy New Year!

Christmas was wonderful! We had such a great time with our family. Blair loved getting to be with his grandparents, aunts, uncles and cousins! We live in such an isolated state right now that having people- other than his mama and daddy- around him was awesome. It was funny to watch him watch everyone else.

We had great plans to do a lot of things over the Christmas holiday that did not happen. We thought that we would finally get out to some friends houses for parties, go see santa and most importantly get back to St. Peter's for Christmas Eve service. We realized that while we are definitely ready to get out and do more it is not time yet. We have made it this far without any unnecessary colds, viruses or flus so why start now.... So we regretted to all of the parties and decided to stay home again from church, but we still had a great Christmas. We are lucky to have a great priest and friend who remembered us and brought church to us. We certainly miss St. Peters!

While we did not do a lot of the things that we thought that we would do, we did alter our strict little schedule! Blair slept at his grandmother's and his aunt's house. He did great, and now we are feeling like we can do more and more....

For the last week, Blair has been SITTING UP to eat in his booster seat. He looks SO BIG in that chair. AND, I was right, he now has a tooth. He cut his first tooth yesterday and the 2nd one will be here very soon. It is crazy how wonderful and sad that can feel all at the same time. When Stephen got home last night, I told him that I had some news..... I told him that Blair definitely had a tooth. Even though, we both knew that it was coming, Stephen's mouth dropped. Then, I showed him the new sharp little guy, and Stephen looked at me with those sweet little eyes and said "this is so exciting but I am a little sad too." We only want Blair to grow and be stronger every day, but we are enjoying him so much that we just wish that we could stop the time. I know that every parent feels these amazing feelings of love for their children, but it is something that no one can accurately describe until until you are experiencing it for yourself!

How grateful we are for our sweet little Blair!

Just a quick update.....

Blair is doing great. He is almost 15 lbs now! It is hard to believe how big he is getting. Everyday is such an amazing gift! At our last round of doctor's visits, he was doing incredible. So much so that we do not have to see any of the specialists until the end of January. His reflux is much better. He still takes medicine, but his bed is now not inclined anymore!! His heart and pulmonary artery look good, but we head back to Egelstson in the beginning of 2007 for an MRI and another Cath. Until then, we will just keep praying that everything continues to get better and better. His breathing is much better most of the time. Recently, he has sounded a bit wheezy again, but again, until something else goes on, we will just hope and pray that his breathing will get better.

It is amazing to watch him grow and learn and become more of a little person. He is almost sitting up by himself. He loves the jump-a-roo. He bounces and bounces and giggles at himself! He is grabbing everything and putting everything in his mouth. No teeth yet, but I feel like they are coming soon. He loves to eat! Especially those sweet potatoes, carrots, plums, apples, pears and bananas. He still loves to smile and laugh. He screams in delight when he sees his daddy. He loves his grandmother's visits! Tonight, his uncle Ryan came home for the next 10 days, and he loved seeing him- especially when Ryan agreed to try to put him to bed ON HIS CHANGING TABLE! Uncle Ryan has a lot to learn, but the great thing is that he loves Blair so much, and he will learn everything very fast!

Blair is going to have the greatest time getting to see his grandparents, aunts, uncles and cousins over the holidays. We are so excited for his first Christmas! I always love Christmas but this year more than ever. I have had so much fun thinking and preparing for it. I am so excited that we are starting so many traditions this year that will last for the rest of Blair's life, and I am so happy to be sharing all of our old family traditions with him as well.

The last 7 months have been amazing. We could not have special ordered anything as special as Blair. We are constantly reminded that we have truly been blessed with a wonderful gift from God. We have really treasured every minute with him, and as much as we look forward to all that will come in the future, we sooooo don't want the time to go by as quickly as we know that it will. The beautiful thing about being quarantined during these first few months is that we have been able to savor every second with Blair! There were (are) times when I feel like this small house is getting smaller by the second and like I will never know "normal" life again. As many of my sweet friends know, there are times when I have been lonely and anxious, but then I realize how incredibly lucky I am that I even have a child- much less one as extraordinary as Blair- and how incredibly grateful I am that Blair is doing as well as he is doing, and all of (well most of) my crazy emotions start to disapear.

MERRY CHRISTMAS!

p.s. I cannot wait to update y'all after Blair's first Christmas.

How life has changed!!

I still cannot believe that I am stepping over a bouncy seat in my kitchen and a swing in my den, picking up stuffed animals,washing teeny tiny precious little outfits, and my favorite-- unloading a stroller out of MY car! Exactly 1 year ago, we did not have very high hopes of ever doing these wonderful things, and now we have a hard time remembering life a year ago. I will never stop being amazed at how quickly life can change. Sometimes it happens gradually and other times it happens without notice, but either way, time really does fly.

In this last year, we learned that we were pregnant after being told that it would proabably never happen! I saw my body gradually grow and felt our lives quickly change in preparation for a new person in our house! We learned that our baby may have some heart complications and began a life of trips to Atlanta for doctors appointments and ultra sounds. We grieved for our sweet little unborn child, but then we were told that his heart was healthy. We could return to our normal life and deliver our baby in Rome. We were discharged from Atlanta on May 4th and then 2 weeks later at only 34 weeks, Blair came into this world 6 weeks earlier than expected. As you know, he was born with a pulmonary artery sling that had to be repaired so then our life at Egelston Childrens Hospital began. 4 weeks later, he was discharged home, and our life with a new baby in our own home began. Now only 4 1/2 months later, the doctors visits and hospitalizations have slowed down, and life really does seem so complete. What did we do before??

I am truly so thankful for my life! I am so thankful that God chose Blair for us and us for Blair. I am enjoying this time in my life so very much, and every day that Blair gets bigger and stronger is a blessing!

I love it when Stephen and I get to wake Blair up and watch him stretch and rub his eyes and then realize that his mama and daddy are there for him! His sweet gummy grin makes our morning! I love breakfast with my boys!! I love our morning walks and seeing the world the way it seems that Blair sees it-- everything so new and exciting. I love our routine, and I can hardly remember my routine only 1 year ago. I hope that I continue to enjoy everything as much as I do now. I hope that I always remember how precious life is and how quickly it can change.

September 3, 2006

It has been a while since we have posted anything on this blog, and I have received several phone calls from people wanting to know how Blair is doing so I thought that I would update the Blog. I read other Blogs daily and have logged on to post something here several times, but for some reason I never actually write anything. Tasha and Sarah started this Blog, and Stephen is the one who has done most of the posts. Now, I will give it a shot.

Let me start by saying how incredibly blessed we are to have Blair in our lives. He is so much more than I could have ever imagined. Of course, I am his mother and a new mother so I am saying what every other mother has said at some point!

It has been a crazy 14 weeks since Blair decided to introduce himself to us 6 weeks early, but finally things are settling down, and I am beginning to feel like we have fallen into some kind of routine around here.

Blair finally came home from the hospital on June 19th, 1 month after he was born. As things go in the NICU, we were cautiously optimistic that he would come home that day, but we knew that things could change very quickly. We had been told that he would come home earlier, but issues kept cropping up and his discharge date kept changing. So, on that Monday morning, Stephen dressed for work. He decided that if he dressed as if Blair would be coming home, there was no way that he would. Once they make the decision to let you go though, things move very quickly in the NICU. We were done with all of the paperwork and ready to go home by mid morning- which was great because we thought that we could stay on the great NICU schedule, and we did for a while. Now, I am laughing at how quickly our "schedules" and "routines" were thrown out the window!!

We were so excited that he was coming home, but he was still such a tiny little baby that we were almost frightened. Once we got home, we really did not know what to do with ourselves. We came home with no medications, no heart monitor and only follow up visits with his pediatrician, Dr. Rogers, and Cardiologist, Dr. Donner. It was too good to be true. The first couple of weeks we tried to stay on schedule (smile), and we were just trying to figure Blair out, and he was trying to figure us out. Now, that seems so long ago, and we cannot imagine not knowing Blair. While we have a lot more to figure out, we definitely feel like we know him and know him well!

Not long after we got home from the hospital, we noticed that Blair seemed to be having some acid reflux. Wow! I had no appreciation for that prior to Blair. The reflux has turned out to be our biggest struggle. I have had so many friends struggle with this with their children, but really, I had no idea how hard it could be. We have done all of the typical tricks for reflux- elevated him and his crib, tried lots of medications and thickened his food. While we were going from doctor to doctor and trying new remedies every day, Blair gave us one scare that sent us to the ER on a Sunday night, and we now know that was all reflux related. It was very tough for a while because Blair was in such terrible pain, and while he still has flare ups, we finally feel like we may have it under control. The incredible thing about sweet Blair is that even when he is in terrific pain, he is still such a sweet and happy baby!

We also noticed very early on that Blair's breathing is a little noisy. At first it was scary, but in July, Blair underwent another Bronchoscopy, and Dr. Teague, his pulmonologist, determined that Blair has mild trachea malasia and a narrowing of the area between his trachea and right lung- both probably from where the pulmonary sling was before it was repaired. We are very hopeful that his breathing will get better and better as he grows.

His left pulmonary artery is still smaller than we would like, but we are very hopeful that it will not require any additional surgery. Yesterday, Blair was in the cardiac cath lab at Egelston, and Dr. Kim was able to dilate the left pulmonary artery with a balloon. He did not have to place a stent in the artery which was great news. Blair may have to have the area dilated again from time to time, but we will take that over another surgery any day!

All in all, Blair is doing very well. He is growing every day. He is now 11 lbs 7 oz. He loves to smile big gummy grins! He is already a flirt- even if it is just with his mama and grandmothers! He would like to talk right now. He coos a lot! He loves to kick in his bouncy seat or swing. He loves his morning walks, and we think that he is ready to get out and meet the world. There are so many special friends that he has heard about, and we are so excited for him to meet you all. We are slowly doing things, but we still have to be very careful that he does not get sick after everything that he has been through and because of his ongoing issues. Thank you all for your patience, and please know how much we really want to get out!!

I want to thank all of you who have helped us during this time. The doctors have been wonderful from Asa to Dr. Rogers, Dr.Donner, Dr. Kirshbaum, Dr. Long, Dr. Teague, Dr. Blumenthal and Dr. Kim. All of the nurses at both FMC and Egelston have been incredible- from Rita, Troyce, Tracy, Sherry, Kristin, Vickie, Lou, Carolyn, Reesa, Becky, and I know that I have left someone or some people out- please know that it is not intentional. Also, thank you everyone who brought us yummy food. We enjoyed all of it and so appreciated it!! Lastly but most importantly, thank you all for your prayers. We are overwhelmed by the prayer and so, so grateful for every prayer said on Blair's behalf. We know that God has heard a lot of prayer for Blair and answered a lot too. Thank you all from the bottom of our hearts! We love you all!! Kimberly