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.

Update....

We just got another update on Micah. He is stable and handling the Cath very well. The OR nurse sounded very confident. The doctor is taking the measurements now and after everything is done he will come out and explain to us what is going on. Micah will definitely be going to the CICU to recover. They don't know if they will pull the breathing tube right away, they want the ORL docs to look at his throat first. Please keep praying.

Surgery Day....Please Pray!!!

These are the updates so far!!!

At about 8:30am

We are in Boston, checked into the hospital and Micah has been taken back into the Cath Lab. He was pretty loopy and sleepy but was not happy when we handed him to the nurse. My poor baby!! Now we wait. We should be getting hourly updates, but the minutes will crawl by like hours. Please please pray that Micah will be okay!!!!

At about 9:00 am

We just got our first update!! Micah is asleep, intubated, IVs placed and they are getting ready to start the Cath first then they will begin the process of changing his pacer battery. Micah is still my big fighter boy and it took them a little while to fall asleep since he was fighting the sedation. We'll get another update in about 45mins to an hour. Please keep praying!!!

At about 9:30am

Please pray for Micah!!! He really needs it!!!! One of the anesthesiologists just came to talk to me. Micah's left ventrical is having some trouble pumping and they are having to use some medications to help his heart. They don't know what's causing this yet they are still pushing the Cath through his veins. It looks like he will be going to the CICU after surgery. They also want to get someone from ORL to take a look at his throat. Please please pray!!!!

TWO YEARS AND COUNTING!!!

2 years ago, tonight at 10:30pm, my water broke. I didn't realize that is what happened, since, with my 3 older children, my water had never broken on it's own. I thought nothing of it and went to bed. Little did I know, that night would begin a roller coaster of events, emotions and faith testing that I don't think I could have EVER prepared for. In just 48 hours Micah will be 2 years old and once again I will know the joy of celebrating another year of his incredible life. His enterance into this world is something I could have never predicted. He, like his siblings, was not a planned blessing; but a welcomed surprise from God. I saw my doctors throughout my pregnancy and no one told me that I should be concerned for his health. I was only told that his heart beat was strong and he was growing on schedule.

Without a second thought, I packed up my family and followed my husband to Germany. We began settling in to our new home and counting the weeks until we thought Micah would come. But 3 weeks before his due date everything changed. He arrived by emergency c-section and I never heard his cry. Though they brought a bundle of bankets to me, I never saw him. When I asked what was wrong I was put to sleep. When I awoke I was told my baby was no longer with me but 2 hours away in Nurnberg. The fear on my husband's face told me something was very wrong. Later I would find out just how wrong.

With the help of his incredible unit we were transfered back to the States faster than I could have imagined possible. Soon Micah and I were in Boston and we were given "The Plan". Take him home, love him, care for him, KEEP HIM CALM, bring him back at 3 months old and they would repair his heart. We did all of this and Micah thrived!! He gained weight and grew stronger faster than the doctors expected. The day Jason and I handed him to the OR nurse was the hardest day of my life. Kissing his little head and silently begging God to give him back to me was the hardest thing I have ever done.

We paced the OR waiting room watching the minutes and hours tick by. Hope and terror every time I saw the Notifying Nurses walk near and then pass, or come with an update of Micah's surgical pogress was beyond stressful. I think back to that day and wonder how we made it through. After 6 1/2 hours Dr. Fynn Thompson came to see us. He said Micah's TOF was unlike any he had seen before and that he could not save his Pulmonary Valve and that Micah was in total heart block. He was hooked up to an external pace maker and there was hope that as the shock of surgery wore off his heart would again beat on its own. After another hour we were finally able to see him again. He had tubes and wires coming from everywhere. There were machines tracking everything his body did. Though those things were there, I did not acknowledge them. All I saw was my sweet baby boy PINK!!!

Over the first 3 months of his life he had slowly begun to turn grey. His fingers and toes were a light shade of blue. These colors became his "normal". I would bring him to his doctor appointments and they would test his oxygen levels and he remained steady between 85-90%. I looked up at his monitors beside his bed and saw the most beautiful number...100%. Micah was finally getting enough oxigenated blood to his ENTIRE body!! God had guided Dr. Fynn Thompson's hands to fix my son's heart.

Since that day MANY more roller coaster moments have happend. Collapsed lungs, Cardiac arrest (TWICE), pace maker placement, pneumonias, feeding tube placements, massive infections in his stomach, abdomen and lungs, many terrifying nights begging God to keep Micah breathing until I could get him to the nearest hospital where someone could help him. Many times I have had to hand him to someone else so he could get the help he so desparately needed, help I could not give him. Each time I held my breath hoping and praying that he would be given back to me.

Now, in just 2 days, Micah will be 2 years old. He is strong and healthy, active and playful, sweet and loving. I know we still have many more adventures ahead, some in the near future and some many many years down the road. I know giving my son to another person will never get easier, but I know God is watching over my little man and that He is faithful in His love and care of my son, His precious gift to me.

Happy Birthday my darling boy!!!

Up coming Surgery...

We've gotten the date for Micah's next surgery. August 19, with a Pre-Op date of Aug 18. This is to change the generator for his pace maker. If you are a praying person please mark your calendar to send a prayer for Micah. If you are not a praying person please mark your calendar to send a happy thought in Micah's direction. I know this is "minor" compared to his other procedures, but I'm still nervous. Thanks!

Micah's big brothers and sister. They truly adore their little brother and cheer him on when he makes another milestone.

Micah at 22 months!!! He is getting so big and so chubby!!! Loving his progress every day!!!

How time flies...

It's incredible to think it's already June 1st. It's been a whole year since Micah's health finally turned around. On May 27th it was the 1 year anniversary of his Cleft Palate repair. Before that Micah was in and out of the hospital every couple of weeks since January 2010. He was small and weak and was barely growing at all. He would randomly stop breathing and send us into a panic trying to get him to restart. He battled infection after infection, every treatment/procedure they did to fix one problem another one would pop up. Then his palate was repaired and tubes were placed in his ears. Suddenly everything changed!!! He could hear!!! He could take a bottle!!! He could eat baby food!!! He began physical therapy and began to use his body to travel. It was as though he was a different baby. He was always a fighter, but you could see how weak he was. Suddenly it was as though he got a second wind and he was pushing against every barrier put against him.

It wasn't until last December that he ended up back in the hospital for something; and even that was minor, just observation for the croup. He did end up having the emergency circumcision last December as well but that he recovered from very quickly. Though the winter was a little hard on him, he pushed himself to get better every time. He was not about to be taken out of the game for the sniffles or a cough. He has things to do and he was going to do them no matter what. Isn't it amazing how a baby can show you how to live life even when they haven't been on this world very long?

It took Micah 9 months, from the time he started PT for him to start walking. Every week Miss Hannah would come and work with him and push him to get stronger and just before she would leave she would show Micah a new trick. When she returned the next week he would have mastered it. Miss Hannah would always say how impressed she was with his personal drive to get stronger and do this things a "normal" kid would do. 9 months to go from just laying in a corner on some pillows, doing nothing but watching his siblings play and having his meals pumped in through the feeding pump, to rolling over, sitting up, scooting, crawling, standing, cruising and eventually walking. I know that's normal for most babies from birth to 9-10 months, but Micah was almost 10 months old when his palate was repaired. He was seriously delayed and he pushed his little body to do more than he had even done before.

Now we are getting ready to celebrate his 2nd birthday in August and he is walking, running, eating normal food, and even trying to talk (kinda). I can't believe in just a few days he will be 22 months old. It seems unreal all the changes and growth he's made. With everything his little body has gone through; all the pain and set backs, I know God has big plans for him. I can't wait to see what they are!!!!

Incredible News!!!!

Earlier this month Micah had an appointment with his cardiologist. While there his heart rate was high and this concerned the cardiologist and the pacer team. We've know for a long time that Micah's pacer isn't working correctly so there is concern that it may not always pace his heart correctly. Shortly after that appointment we had to take Micah for a special EKG and to place a Holter on his for 24 hours to track his heart. Today we got the results back and..... HE'S OKAY!!!! HIS HEART IS OKAY!!!!! HIS PACEMAKER IS OKAY!!!!!! Dr. Gauthier and the Pacer Team think that Micah may have been anxious when they did the original EKG on him and that is why his heart rate was up. Dr. Gauthier said that Micah is stoic and that is why they couldn't tell he was upset. This is some of the best news we've ever gotten!!!!

GONE GONE GONE GONE G-O-N-E GONE!!!!!!

Just got back from Boston aaaaaaaand... THE G TUBE/ MIC-KEY BUTTON IS GONE!!!!!! G-O-N-E GONE!!!!! Dr. Zitimersky said that she and Dr. Brown agreed that Micah doesn't need his tubes anymore! They popped it out and placed a pressure dressing over the hole (which is icky) and we are done!!! GI will only follow him for growth and NOTHING ELSE!!!!!

Just updating...

The recent posts are from the last few days. It's been pretty crazy with Micah getting very sick, then miraculously getting better. I'm sorry I haven't updated in a while, though the last few days have been wild, life itself is hectic with just normal day to day life.

Home!!!

It is so good to be home. We weren't in Boston for very long and we did see some much loved doctors and nurses but it is so good to be home. The kids were very surprised to hear us pull in the driveway.Thank you everyone who prayed for Micah and made meals for my family. I really, truly appreciate all the love and support. Your prayers worked, Micah recovered faster than any of his medical team expected. He never "got worse" only BETTER. I think Micah proves prayer works.

Going home!!!!!

WE ARE GOING HOME!!!!!! THE DOCS WERE JUST HERE AND THEY ARE THRILLED WITH HOW GOOD HE LOOKS!!!! WE EVEN SAW DR. FYNN THOMPSON!!!! HURRAY WE ARE GOING HOME!!!!!!

A calm night!!

Micah had a great night!!! No wheezing at all!!! He's had his meds and now we wait for rounds. Hopefully the docs will be impressed and we can go home. Oh and his virus swab came back negative. Yay!!!

On the main floor...

We are on the main floor!!!!! Micah has a familiar nurse tonight and lots of nurse and doctor visitors who took care of him through his trials last year. They all fell in love again. They were so excited to see him and how good he looks now. Hopefully tomorrow we'll be home.

A bath and some fun...

Micah got a thorough scrubbing today. He was covered in tape glue and EKG goo. Now is looks and smells much better. He had a good sized lunch too. Now we wait for a bed to open up on the main floor. He's getting to rowdy for the CICU.

Waiting for a bed...

It looks like we are moving to the main floor today, as soon as a bed opens up. The CICU docs thought about discharging him today, but they decided to keep him here one more day. There is a good chance we good go home tomorrow!!!!

Out of the CICU soon...

Dr. Brown was just here and he said as long as Micah's next virus swab comes back negative, we'll be heading to the main floor today! Woohoo!!

St. Patrick's Day at the hospital...

Ah St. Patrick's Day in Boston...I wonder what the hospital will do. Micah had a good night last night. One little rough patch of wheezing around midnight but after a breathing treatment and a midnight yogurt snack he was just fine and snuggling his Siah puppy and snoozing away. I am so proud of my trooper!!!

Full and resting...

Micah is back to sleep. He had a bottle and a yogurt so he has a happy belly. His breathing is good right now, here's hoping it lasts through the night. Dr. Brown was here to see him (I said "Hi" from you Laura) and he's hoping Micah will only be here a few days. We have to get him over the rough patch.

Finally some food...

Micah is getting his first bottle since about 9 last night. He is such a happy baby right now. They've been giving him his breathing treatments and he seems to be doing okay. They are thinking about moving him to the main floor. The only trouble is nights are the hardest for him.

Back in the CICU...

Micah is in the CICU at Boston Children's. He is finally sleeping but he is still breathing very fast. He has RSV, Bronchiolitis, and a double ear infection. His RSV is progressing quickly and they are worried his lungs (which are infected) won't be able to handle it well. They have him on high power IV antibiotics.

Scary Night...

Micah has just been air lifted to Boston Children's. He began struggling to breathe at about 2:30 and none of our home therapies works. I brought him to ER and they tried to slow his breathing and couldn't so they call for the helicopter to come get him. He has probably just landed at the hospital. I'll be with him as soon as I can. Please pray, they think his RSV is getting worse.

Nutrition check in

Today was a good day. Micah and I went to his nutrition appointment in Peabody and we met his new nutritionist. She was very nice and she kept repeating "Oh My Goodness" every time I explained his medical history or she went through his measurements or she saw what he was eating now. Micah is now 23lbs and 28 inches long. He is in the 40% for TOF babies!!!! Yay!!!!! We have been working so hard to get Micah up to a normal weight since December 2009 and we are finally getting there. With his heart condition he may never reach a "normal" weight, but he will at least be "normal" for him. Micah is such a tough little boy and he is an incredibly hard worker. He is walking more and more every day and he has even become more vocal. (No words yet, but lots of sounds) I am so proud of my little man and I know he has more in him to show to the world.

An amazing milestone

Micah's Dedication Video

An update...

Micah has been doing great lately. Aside from a couple of croup moments and the infection in his little boy parts he hasn't seen the inside of a hospital since his palate repair in May 2010. It's been incredible having him home and healthy. He has Physical Therapy with Miss Hannah every week and he has been exceeding all our expectations. He is standing on his own without having to hold anything for stability!!! He really is a miracle baby. With all that he has been through, he is one of the few people I have met in life with a good reason to be miserable and sour. He is a happy, thriving, and healthy baby boy. He loves playing with his brothers and sister, he loves to climb and "wrestle" Daddy, he has been climbing stair (with Mommy or Daddy with him) and there isn't a day that goes by without his smile and laugh. He is a blessing from God. Today, during PT, his big sister Emily got mad and started pouting. Micah stopped working with Miss Hannah and went to Emily and tried to make her happy. She smiled at him and gave him a hug and kiss. Miss Hannah and I were floored. I've never met a baby who was so caring!!!! I am so proud of my little man!!!! This Friday he will be 18 months old!!! Hurray!!!!! I can't wait!!!!!!

This really does explain it all...

One day my world came crashing down,
I'll never be the same.
They told me that my child was sick.
I thought, "am I to blame"?
I don't think I can handle this.
I am really not that strong.
It seemed my heart was breaking.
I have loved him for so long.

I will not give up on this child.
I will listen to your advice.
I will give my child any chance.
No matter what the price.
I will learn all that I need to help my child thrive.
I'll even use that feeding tube.
My child must survive!

Will he need a lot of therapy?
Will he gain the needed weight?
Please God, help me do this.
I will accept our fate.

When the monitors beep at night, it serves as my reminder.
How many parents would love that sound.
Tomorrow I will be kinder.
As another Angel earns his wings,
I run to my child's bed.
I watch him sleep for quite a while.
I bend down and kiss his head.
I cry for the parents whose hearts have been broken.
I look to You wondering why?
Oh Lord, I just can't know your ways....no matter how I try.

And yet, I trust you hold his life, and guide us through each day.
My mind says savor each moment he's here,
but my heart begs, "PLEASE let him stay"!

From pacing the surgical waiting room, to sitting by his bed.
From wishing for a good nights sleep, to learning every med.
From wondering, "will he be alright?", to watching him reach out his hands.
With every smile my heart just melts, despite life's harsh demands.

For all who see that faded line.
I look to them and smile.
You see my child is loved so much.
I would face ANY trial.
That scar I trace with my finger (It's the door to his beautiful heart).
God must have known how much I'd love him (Just as He loved him from the start).

A heart mom is always a heart mom.
Now wise beyond her years.
For those who have angels in heaven,
Our hearts share in all of your tears.

Every day I will try and remember,
I was chosen for him (and no other).
I will always embrace that beautiful day.......
When I became a "Heart Mother".

- Author Unknown