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.

And so it begins...

Last night Micah spiked a fever and began complaining of ear pain. He took him straight to the ER and they said he didn't have an ear infection but he did have bronchitis. He and I barely slept last night. He coughed and whimpered all night and I ran his nebulizer every hour. He has barely eaten in the last 24 hours and has almost no energy. He usually runs around the house all day and refuses to take naps. Yesterday, and so far today, he has spent his time on the couch watching movies and coughing.
Sadly with his Tetrology of Fallot, his immune system is a lot weaker than a normal kid. Every time he gets sick, it gets worse very quickly. He has gone from sniffles to RSV in a matter of 48 hour in the past. With bronchitis, he could get pneumonia very easily. Please please pray that his doctor has a way of easing his breathing (especially while he sleeps) and that they have an antibiotic to kick this thing out of his body. The Kansas City hospital is so far away and I don't know if our base hospital can handle him.

We met the new pacer team!

For those keeping up...Micah had an appointment in Kansas City to meet with his new pace maker team. They are very thorough there. We waited a little while because everyone involved was reading Micah's "novel". They ran 2 EKGs and did a FULL pacer interrogation. There is something heartbreaking about your 3 year old grabbing his chest and saying "Ow! I don't like tha

t! Mommy make her stop!" It is amazing, though, that he knew that the nurse running the interrogation was the one messing with his heart rate. They were also amazed at how well behaved he was. He stayed still for everyone. The pacer doctor even said that they need to send all of their babies to Boston to learn how to behave in an examination. Results! Micah's battery only has about 1 1/2 year - 2 years left. His right ventricle is pulling more energy than they were expecting. They are hoping that this is only because he is fighting off a cold virus and that in 2 months everything will be fine. If not then Boston will need to make a decision about changing the battery again soon. Everything else looks good. All chambers are firing and his heart rate is perfect. Please pray that his heart is only drawing more power because of his cold and that there is no underlying cardiac problems." 

3 Years...

3 years. 3 years ago I handed my baby over to a nurse who took him away. 3 years ago I sat in the OR waiting room of Children's Hospital Boston watching the seconds tick by like hours. The hours like days. 3 years ago I felt fear and panic every time the waiting room nurses walked by. 3 years ago I sat in almost complete silence with my husband as we waited for news for our sweet little baby who was in the OR unhooked from his heart in an attempt to save his life. 3 years ago I tried desperately to read the face of Dr. Fynn Thompson, as he explained Micah's surgery, to figure out if Micah would survive. 3 years ago I saw my little baby, with tubes and wires coming out of his tiny body, and seeing his cheek pink for the very first time. 3 years ago, Micah SAT'd at 100% for the first time. 3 years ago began a journey of wonderful ups and terrifying downs. 3 years ago today, Micah had his TOF repair and the first of many surgeries, illnesses and battles to fight. Micah fought hard and continues to fight to stay here with us. I cannot imagine a way to express my gratitude to Children's Hospital Boston, the amazing staff of 8 South, East and West and ALL of my incredible family and friends who have prayed without ceasing for Micah when he is well and he we don't know what will happen next.

Prayers are needed...

In my search for answers for how to best care for Micah and to find support with other TOF parents I have met some incredible people. One of them has become a good friend and her baby needs prayer. Joanna is the amazing Mommy of Baby Gabriel. He is a new born with TOF. He has not had his repair yet but his health has become more concerning. His doctors have found fluid around his heart and he will need his repair in the next 6-8 weeks. This is a lot sooner than they originally anticipated. Gabriel, his Mommy, Daddy and big sister need our prayer. I know how they feel. Being scared about not knowing the future and watching your baby be uncomfortable and not being able to do anything about it. Please please pray for Gabriel, his family and his team.
The following is a post from his Mommy:

"I've debated posting, but decided that the people that care for updates will want to know so they can start praying again. The news we received yesterday wasn't what I hoped for. Gabriel has fluid around his heart, which was causing him pain. Gabriel is set to have his next open heart surgery in 6-8 weeks (or so), which is months sooner than we thought. He will have two procedures between now and then in the heart cath lab, where they will try to balloon his pulmonary artery. These procedures carry risks, but we have no choice. His pulmonary atresia(stenosis) is bad and it makes for more surgeries for my son. Please pray for these procedures to be successful, pray for my sons strength to get through all this. As I type this the tears stream down my face. I simply can't understand why this is happening."

Just a couple months later...

Well it's been a couple of months since I last posted on here. We have finally settled into life here in Kansas and since school has begun, we are getting into our patterns. Micah has been doing very well. We met his new cardiologist earlier this month and they ran every test on. (EKG, Echo) His heart looks great!!!! Dr. Kaine was very pleased with his pumping strength and that his rhythm looked good with the new pacing system. Dr. Kaine had decided to put him on the 6 months check up schedule. This is great news!!! This means the new heart meds and the new pacing system are still working the way we need them to.
We had a scary weekend during Labor Day weekend that had me worried that things were changing back to the way they were last year, but it turns out it was only he asthma/reactive airway disease acting up. We had to bring him to the ER a couple of times because he was wheezing pretty badly. He thankfully hasn't had a problem since then.
Just last week he began PreK and he L O V E S it!!! He is becoming such a big boy. He's almost completely potty trained (only rare accidents) and he loves being just like his big brothers and sister. 2 weeks ago we had his speech evaluation to try and continue his therapies from New Hampshire here. It turns out that, even though he has a little lisp and sometimes struggles to get his point across, he is at age appropriate development. He is in PreK as a Peer Example for the kids in his class who may struggle with speech or movement. I am beyond proud of him!!!!! He is amazing!!!!
There were times when he was a baby that I really wasn't sure we would see this day. His battle to be healthy has had so many twists and turns and ups and downs that even last year I was wondering if his heart would get the better of him. But his fight to stay with us and the amazing doctor's and nurses in Boston and New Hampshire have given him back to us again and we are moving forward with life. Micah is a great example of just how incredible and precious life really is and that it should be fought for with everything you have.