Happy 5th Birthday!!!!

9 months can't really prepare you for when you finally have your baby and NOTHING can prepare you for those words. "There is something wrong with your baby." NOTHING can prepare you for the fear for your baby and the pain of separation for 3 days. 
At 12:57 pm on August 4, 2009 Micah was delivered via emergency c-section. I never heard his cry. I never saw his tiny face. The anesthesiologist put me to sleep as soon as I realized something was wrong. When I awoke and asked for my baby. 
"He's not here. He was sent away 2 hours ago. Your husband is waiting to talk to you."
My husband. My brave soldier. I have never seen him so scared. He explained that our baby wasn't breathing well and the hospital had sent him away to a children's hospital in Nuremberg to figure out what happened. I begged him to bring the camera and take lots of pictures so I could see him. 
He returned 6 hours later with more worry weighing him down. While I looked at his pictures of our tiny infant, he explained what the doctors knew so far. Micah's right lung hadn't unfolded properly and that was why he hadn't taken a full breath after he was born. They found something else. Micah's heart wasn't right. In fact, something was very wrong. Micah was on oxygen and yet was only SATing at 75%. They needed to run more tests.
I asked my doctor when I could leave the hospital/be transferred so I could be with my baby. I couldn't leave. Something was wrong with me too. I had pre-eclampsia.That's why my labor started so early. My body needed to recover. 3 days. 3 days I waited, climbing the walls. Asking everyone who walked in to my room if they had heard anything about my baby. So many people worked so hard to keep me up to date with everything happening so far away, but I just had to get to my baby. 
Finally I was placed in an ambulance and transferred to Nuremberg. Finally I was in the same building as my baby. Finally I could see him, hold him, fix him. Sadly no amount of boo-boo kisses could fix my sweet baby. He was very sick and very weak. Just 5 lbs and unable to eat on his own. Unable to leave his oxygen line; holding him was out of the question for days. Finally, when I could hold him, so many things had to happen and I needed help making sure everything stayed where it should. Dr. Hemmerson explained that Micah had Tetrology Of Fallot. He would need surgery and soon."If you want him to celebrate his first birthday, you'll get him the surgery." He was very weak and more tests were needed to see if he could survive the flight back to the States. At 5 days old Micah had his first Tet spell and this panicked everyone since he should have been too young to have one.The race to get him to Boston Children's Hospital was on. Micah was 2 weeks old when we landed at Logan Airport and 3 weeks old when he was released home. Jason and I had to learn so many new things. So many things that should come easy/naturally were now so much more difficult. 
That was 5 years ago. 5 years of struggle and joy. 5 years of fighting for every thing and every day that Micah has had. My sweet baby is 5 years old. 5 YEARS OLD!!!!!!!!! I am so excited to be celebrating this birthday. Micah has fought hard and continues to fight every single day to be the happy, healthy boy that he is. He is my Mighty Micah Man!!!!! Happy birthday my darling!!! I am so proud of you!!!!

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.

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.

We've got a doctor!!!!!

I am very happy to announce that we finally have a cardiologist in Kansas for Micah!!!!!!! It took a little finagling with our insurance company but we will be meeting Dr. Stephen Kaine on September 7 in Kansas City. This is the doctor that Dr. Cecchin wanted Micah to see. YAY!!!!!! I'm so excited!!!!

We made it to Kansas.

Well that long awaited day came; we left NH and moved to KS. It was 3 long days of driving but we made it with our sanity intact, thanks to some awesome travel kits, sent by my grandmother, and a DVD player. It took a few days but we found a wonderful home in a great neighborhood. We are close to the school and hospital and just a few minutes from the base. The kids love it here. We actually have a yard for them to run in they have used it every day that we've been here.
Micah did great! He is still happy and healthy. After we arrived I realized we were low on his meds (probably should have checked that before we left) so we made an appointment and met his new base pediatrician, Dr. DuBois. She's awesome! So sweet and very very thorough. She did not just assume she knew what was going on with Micah but asked me lots of questions and actually listened to me. She also put in the referrals for Micah's new team at Children's Mercy in Kansas City (BTW, we drove by it on our way through Kansas City). I should hear something back from TriCare soon and then we start making appointments. Dr. Cecchin gave us the name of a doctor he thinks is good enough to treat Micah. A Dr. Steven Kaine. I am anxious to meet him (Dr. Cecchin sings his praises) and have him look at Micah.
It feels weird to be so far from Boston. I know there is a hospital here that can handle him, but there is a voice in the back of my head that keeps saying "What if... What if...". We do have appointments for Micah in Boston next May so we will be going back. I refuse to give up Micah's Boston team. They quite literally know him inside and out. They know when he's okay and when something is really wrong. I have confidence there. Oh well, as we settle and I meet this new team I have no doubt my confidence will build here too.
Life is never static, it is always fluid; especially for a military family. Let the adventure begin!!!

A day in Boston!!

So the trip to Boston was fun. Micah was amazing, laying still for his ECHO and EKG and only being a little wiggly during his pacer interigation. We also got to see Dr. Cecchin and he gave us the name of Micah's new cardiologist in KS. Dr. Stephen Kaine is his name and he and Dr. Cecchin did their resdiancy together. Dr. Cecchin says he considers Dr. Kaine to be on the same level as Dr. Borwn. No...w for the results...Micah's EKG is clear, his pace maker is working great and should last Micah another 2-3 years. The Echo (the most telling test) came back great too!! His heart looks great! He has a strong beat (thank you pacer) and his atrias and ventricles look great too. That's right! His left venticle is functioning amazingly!! They measured the pressure and strength of squeeze and it's at the bottom level of normal for a NORMAL, HEALTHY heart. Dr. Cecchin told me today that last November they were seeing signs of complete heart failure and they were going to give Micah every chance to pull out of it before they told us about it. They did and Micah is back to "normal". He is no longer showing signs of heart failure!!!!!

I really need to keep up on this blog :-)

Sheesh, it's been so long since I updated this page. Micah is doing great!!! In January, he began taking Enalapril to help ease the pressure and work on his heart. After an echo, he was showing signs of heart failure in his left ventricle. The doctors decided to try medication before looking at more surgical options. Their hope was that the weakness/failure was due to Micah's heart working too hard and it wasn't able to rest and heal. The Enalapril is a wonder drug!!! Within just a week there was a visible change in Micah. He began growing and putting on weight!! In January he was barely in the 10% for his age. After his last echo, February 28, he was in the 37.9% weighing 29 lbs and he was 34 inches. Not only was he grown but his heart was healing. The hole in his heart that had been patched was finally completely healed and his left ventricle was finally recovered and pumping the way it should. His lungs were clear and his liver was back to it's normal size. Since starting the medication, Micah only naps maybe 4 or 5 times a week. He is full of energy and even more playful than he was before his new pacer and medication. He does need to sit and rest for a little while if he has been running or playing hard, but that is normal for TOF babies. Dr. Gauthier was thrilled with his progress. She said that the only "concerns" in his heart were all Tetrology related. Things we already knew about and have plans for. We'll be going to Boston on April 10 so Dr. Brown and Dr. Cecchin can see him and run their own tests. They want to get their hands on him one more time before we move to Kansas in May. I am so glad they are too. I am very nervous about this move and how he'll handle it. Knowing his doctors have seen him and they say he's okay will make moving a lot easier. Thankfully we are keeping all of our doctors here in Boston, we'll simply come back once or twice a year to see them. We''l have local doctors in Kansas too, but all decisions will be made by our Boston doctors. We love them so much. They care so much for and about Micah and that gives us so much comfort. Knowing that the best doctors are following him and doing everything they can to keep him healthy is wonderful. Thank you all for your prayers and support these last 2 1/2 years. I'll keep you updated about the April appointment.

The new pacer...

Today Micah went in to surgery for his new pacing system. The pacer he had before had only one lead going into his right ventricle and his heart was no longer tolerating the abnormal rhythm. His left ventricle was showing sign of weakness with the lack of use. Today he received a bi-ventricular pacing system that put a lead into both his left and right ventricle to mimic a more natural rhythm. This will, hopefully, give his heart a more natural beat and move the blood in his body with more force and get the extra fluid out of his lungs and liver and make his breathing much easier. He woke up around 3:00pm and showed he had a lot of fight still in him. We have had some trouble finding that right balance of medicines to keep him comfortable, but he hasn't shown any signs of distress and though he's uncomfortable at times he is still cooperative. (Amazing for a 2 year old) Hopefully tomorrow his drainage tube will come out and we will move to the main cardiac floor. The "plan" is for him to stay in the hospital for a couple/few days and then go home at the beginning of the week. If you think of us during your weekend, please say a prayer or think a happy thought for him and his recovery. it would be wonderful if he were at 80% by Thanksgiving so he could enjoy it with his family. Thank you all for your thought, prayers and support as we travel down Micah's path.

2 Years!!!

Imagine yourself in a brightly colored room, there are a lot of busy people moving this way and that, talking to each other about many important thing. There are pictures and paintings on the walls of animals and cartoon characters, all aimed at children. Imagine trying to feel comfort in this room but are unable to shake the fear squeezing at your heart. The busy people walk back and forth in front of your little curtained cubicle. They look in and meet your eyes and give you genuine, caring smiles, trying to reassure you that everything will be okay. This is their life's work and they do it with great love. Imagine smiling back and knowing that smile is no where near your eyes. It is completely fake. You smile as you choke on fear and tears. Trying desperately to hide your fear for the sweet baby that you pass between you and his Daddy. Imagine looking at his tiny face trying to remember everything about it. Every smooth curve of his cheeks, the shape and color of his eyes, the curve of his mouth and they way he smiles back up at you.

Imagine feeling panic every time someone walks in to your curtain cubicle and talk to you about what is going to happen and what will be done in the next few minutes to ease the separation process. Imagine signing sheet after sheet of consent papers while listening to the risks of the coming procedure. Imagine hating yourself as you read you name on those papers knowing you have somehow signed your baby's life away. Put your baby into someone else's hands. Imagine squeezing your baby tight and silently begging them to forgive you for what you were allowing to happen to them. Imagine begging God to make it not hurt.

Imagine seeing a doctor with kind eyes ask you to give your baby a mystery liquid that will help your baby fall asleep. You watch your baby drink it so fast because he is so thirsty from not being fed for more than 12 hours. Imagine looking up and seeing a nurse smiling at you, telling you "It's time to go". The doctor holds his arms out to take the sweet, sleepy baby from you. Imagine feeling the muscles in your arms and legs tighten, ready to hold onto your baby for dear life and run for the door. Imagine forcing your body to extend your arms and place your baby into the doctor's arms. Feeling panic tearing at your chest, trying to burst out of you. Fighting back tears so your sleepy baby does leave seeing your crying. Kissing his sweet head and smelling his sweet baby smell, trying to force the memory to burn itself into your brain.

Imagine watch Daddy kissing your baby and wanting nothing more that to wish all of this away and have everything be perfect. Then looking the nurse in the eye and asking her to give you back your baby when all is done. Begging God to give you back your baby. Begging God to put your baby back into your arms. Following your baby with your eyes as the doctor walks behind the double doors to the OR, then following another nurse to the waiting room to wait for 6 hours to finally hear the words, "Everything went great. There are a couple of small issues but they should go away in time." And then "As soon as he's settled you can go in to see him."

Two years ago my husband Jason and I went through this exact thing with our son Micah. Two years ago, Micah had his Tetrology of Fallot repair at Children's Hospital Boston. It was one of the hardest days of our lives and with the prayers and support of family, friends and the wonderful staff at the hospital we got through it. Micah came out if surgery with a full repair and although his had Complete Heart Block he looks so pink and healthy and his oxygen level was at 100% for the first time in his life. Dr. Fynn Thompson did an amazing job fixing his heart and Dr.s Brown and Gauthier have been doing a fabulous job keeping him as healthy as they can ever since. Micah is a happy, healthy 2 year old now and even with all of the hiccups in his health and many surgeries he is still a sweet and caring baby who cares more about other's BooBoos than his own. He is an incredible little man and I could not be more proud of him than I am right now.

Gee, it's been a while.

Hello all!

I know it has been a couple of months since I last updated the blog and I guess now is as good a time as any to do so. Well it is the beginning of October and life is in full school swing. Jacob and Noah are in 2nd and 1st grade respectively and Emily has begun Head Start here in Newmarket. Needless to say mornings in the Kelsall house are rather hectic. The big kids are really flourishing in school and seem to be enjoying every minute of it. Micah has been doing well too. Last month he had new tubes placed in his ears and the doctor also dilated his throat to ease the stenosis below his vocal cords. It was only an over night stay and Micah was lucky enough to meet one of the hospital's therapy dogs while we wondered the hallways of 8 East. He has Strep throat right now but in about a week he'll be back to normal.

His heart seems to be okay for now. With many meetings between all of the doctors in Micah's cardiac team and a couple check ins here and there, we think we have a plan of attack. For those who don't know, Micah's left ventricle has weakened since his last cardiac check in back in April. In April, everything looked good and we all thought things would stay that way for many years with the odd pacer battery change here and there. While we were having "Pre Op Day" in Boston, the doctors found some concerning things on Micah's Echo and EKG. It looks like Micah's heart is not handling the pacing system he has as well as he should. With this issue his left ventricle has weakened and there is extra fluid in his lungs (which may have caused the respiratory distress on August 3rd) and liver. The hope is that an entirely new pacing system will boost the strength of his heart beat and ease the stress to his left ventricle. With the stronger heart beat the fluid in his lungs and liver should resolve itself.

There was a brief period of time when Jason and I were considering replacing his Pulmonary Valve during this procedure in the hopes that the new valve would also help ease the stress on his heart. With a few more phone calls and doctors meeting to talk about this, we have decided to hold off on the new valve until we see how well Micah's heart is handling the new pacer system. The hope is that everything will go well and Micah won't need his new valve until, at the earliest, he is 10-15 years old. The hope is that he will be able to grow to almost his full adult size before they replace his valve.

We are now waiting on Children's Hospital Boston to call and schedule the new pacer surgery. I'm going to assume it'll be mid November when it happens. But, as we all know, life will continue before and after and I am trying to stay positive and not panic every time Micah looks a little off to me. Please keep Micah in your thoughts as life moves towards his next surgery.

PLEASE PLEASE PLEASE PLEASE PRAY!!!!!!

The surgeon just came to speak with us. Micah is NOT getting a new pacer battery today. The results of the cath show that his left ventrical is not beating the way it should. Dr. Cecchin said that Micah needs a completely different pace maker. He needs a pacer that will pace both the left and right ventricals. His heart is completely dependent on his pacer. The doctor also said that Micah may need more repairs on his heart. It looks like there may be more blockage in his pulmonary artery that will need surgical intervention. The doctor wants him to go on to heart medication to try and relieve the stress on his heart. We will have about 6 months for this decision to be made and action to be taken. Dr. Cecchin wants to meet with Dr. Brown, Dr, Gauthier and Dr. Fynn Thompson to figure out what the next move is. Micah's heart needs help.

Also his liver is showing signs of being slightly swollen; they don't know why this is happening. They decided that since he needs so much more work, they do not want to risk infection by opening him up to replace the battery when in a matter of 6 months he is going to need a completely new pacer and more work on his heart. He is out of surgery and waking up. Dr. Cecchin is with him now as they take out the breathing tube. They are watching him very carefully for any signs of distress or pain. PLEASE PRAY!!! MICAH NEEDS PRAYER DESPERATELY!!!!! Jason and I are very scared.