4 years....

Never before had placing my baby in the arms of another been so terrifying. Never before had there been the risk that I would not get him back. 4 years ago I placed my sweet, 3 month old Micah into the arms of an OR nurse. I desperately tried to memorize all of his little features. Those 2 arms closed around his tiny body and held him tight. Quick kisses that felt like goodbye were placed on his head and the pleading words "Please give him back to me." were said. "We will treat him as if he were our own." was the response. 4 years ago I placed my son into the miracle making hands of Dr. Francis Fynn Thompson and the miracle giving hands of God. 6 hours we sat in almost complete silence in the OR waiting room. Hope and fear engulfed us every time the nurse came with an update. Would everything be okay or would this be THE conversation we were dreading? 6 hours we sat, barely looking at each other, knowing that we were both thinking the same things but didn't want to admit them. Finally it was over. Finally the surgeon came out. He was okay. There were complications but nothing modern medicine and technology couldn't help. Finally we were able to see him. He was covered in wires and tubes. Lines for everything and anything he could possibly need. I don't think I saw them. All I could see was my once grey baby was PINK. PINK!! The most beautiful color I had ever seen. His SATs were 100%!!!!! 4 years have passed since that day. 4 years of ups and downs. 4 years of joy and desperation. Watching him grow. Watching him develop. Fighting for him and with him. Making doctors, who have other patients, think only of Micah and bend over backward to make him well again and again. 4 years and he is as close to a normal 4 year old as you can find. We still have a lifetime of up, down, fights and joy ahead of us; but we will take them one day at a time. I have had days when I wasn't sure today would be here, but it is and "grateful" just doesn't convey how I feel for the doctors, surgeons, nurses, techs, paramedics, flight crews, family and friends who have walked this road with us and prayed and fought with us to have Micah here today. I love you all so much!!!

More troubles for Micah

The following are the updates from last Friday from Children's Mercy Hospital. Boston discovered something was wrong. They were right...

Pace maker check shows Boston was right. There is an issue. Now we are waiting on an x ready. Feeling so nervous.

Two of the pacer leads have broken. Only one lead is working to pace his heart. They are reprogramming him now and I need to figure out when and where his surgery should be done. It needs to be done VERY soon. Now I'm really worried. Please please please pray!!!!!

Finally home after a scary/stress filled day. Kansas City is going to send all the info they gathered to Boston and will talk with the cardio team there. Decisions need to be made soon. I'll be talking to Boston myself next week to figure out what I'm supposed to do. Micah was amazing through the whole thing. He stayed still and was very obedient for the doctors. The repeatedly called him the best patient they had. He is still his normal self and the new settings for his pacer have given him some time but he'll be in an OR soon. Please pray the last lead doesn't break. It's keeping his heart beating.

All those medical classes came on handy last night. I spent the night checking Micah's pulse and breathing and cap refill. He was fine. Steady breathing, strong, stay pulse and good cap refill. I am such a mess now. I really want to get back to Boston. Micah is fine today. Running around being his normal ornery self. If I hasn't seen the x rays myself I wouldn't believe them.

After some recently discovered info, Micah will be having his surgery in Boston. Come hell out high water. Even if I have to put Micah in a stroller and walk from Kansas to Boston, it will be done there.

Micah's heart is currently beating with one pacer wire. We need to get him back to Boston as soon as we can. This week will involve many many phone calls to insurance, hospitals, and the military to get things set up for us to get Micah the care he needs. 

Hurray for good news!!!

Today Micah went to see his cardiologist (not pacer doc). They ran the usually Echo and EKG. I will admit I was nervous. Dr. Kaine is VERY happy with Micah's heart!!! His heart is pumping strong and is reacting well enough to the pacer that Dr. Kaine is going to recommend to the Boston team that they take Micah OFF his heart meds!!! Micah's pulmonary arteries are still small, but they are growing proportionally to the rest of his body. We are looking at a possible balloon cath in September to help open the arteries more and help Micah grow. Micah is still small for his age but he is at about the 23%. We are going to stay on the 6 month check up rotation here in Kansas and hopefully, after a new pacing generator, Micah will move to the 9 month rotation.

Team Mighty Micah Walks Again!!!

I am very excited to announce that Team Mighty Micah will be walking in this year's NStar Walk for Children's Hospital Boston. With all they have done for our sweet little heart hero, this seems like such an small show of gratitude. But if our team can raise even a little of our goal then maybe it can go to help a family who's sweet little fighter to go home. That maybe a scientist in a lab can find a cure. Maybe...just maybe it will help. Please donate to this amazing hospital...to this amazing group of angels on Earth. Everything is welcome. No donation is too small.


http://howtohelp.childrenshospital.org/walk/page/KS0056.htm

Yay!!!

We made it to Boston in one peice!! Micah did great on the flights with no problems with take off, landing or altitude/pressure changes. He even yelled to the pilot to hurry up and take off. "3-2-1 Blast Off!!!!" We are staying with Oma and Farfar and Micah is LOVING all the extra attention. Today we went to Children's Hospital Boston for the developmental assessment. What a day!!!!! Micah did great in his testing today. He is age appropriate for his speech, cognition, fine motor, gross motor, receptive, 
expressive skills. The only "concern" the doctor had was Micah's lisp. Of all the things that could be a problem for Micah, I am NOT concerned about a lisp that is adorable. The doctor was surprised by how fast he did the exercises and how happy he was doing them. She LOVED his sense of humor. She slipped up on a question and Micah burst out laughing and says "Dogs don't have cats!! That's a boy!!!" He was great!!!! We were able to go up to the 8th floor to visit some very dear friends/nurses/staff while we waited for test results. It was so great seeing everyone again.

Flying to Boston

This Thursday, Micah and I will be flying to Boston for the weekend. A couple weeks ago, I got a call from the team that is running a research study about the effects of blood sugar post surgery and developmental delays. They know there is a link between Congenital Heart Disease and developmental delays, but they have found that some patients' blood sugar spikes and some plummets after they have had surgery. They are trying to figure out if the extra step of managing the blood sugar helps or hinders the developmental delay. We have known for a while that Micah is some what behind the ball developmentally. He was unable to roll over until he was almost 1 and he worked and fought hard for 9 months to gain the ability to stand and walk. He spent so much of his first year in the hospital on his back with no occasion to learn these "normal" skills. He was also almost completely deaf for the first year of his life. After his palate was repaired and tubes were placed in his ears he was finally able to hear clearly. After so much hard work was put into helping his through the stages of movement, we began working on teaching him to speak. How to move his lips, mouth and tongue to form sounds and eventually words. He is now in a Pre K program for children with special needs. However he is in the program as a "Peer Example". I am so proud of him. I cannot wait to see him show off all of his new skills to the research team and to help in the care of current and future heart babies as they begin and continue their fights. Our heart babies are warriors! They fight for everything they have. Nothing is handed to them. They fight and earn all they have and all they are. Micah has fought and fought hard to be where he is now. He has fought to be here with us and I know he will continue to fight with everything he has. This will be the first time in his life that he has ever flown commercially so I am nervous about the flight. He has always been in full medical care every time he has been in the air. He has flown in 2 jets, a C-17, and 3 helicopters and every time he has been intubated or on oxygen. I am hoping that he will handle the changes in altitude and air pressure well. His doctors aren't overly concerned (but as his Mommy I worry). I am excited to be going home and seeing family and spending some quality time relaxing.