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