Baby Micah Kelsall

The new pacer...

2011-11-18T19:19:00.002-05:00

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!!!

2011-11-04T09:43:00.004-04:00

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.

2011-10-06T13:07:00.006-04:00

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!!!!!!

2011-08-19T11:44:00.001-04:00

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....

2011-08-19T10:13:00.001-04:00

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!!!

2011-08-19T09:33:00.002-04:00

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!!!

2011-08-02T22:00:00.001-04:00

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...

2011-07-07T17:20:00.001-04:00

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!

2011-06-06T18:19:00.001-04:00

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

2011-06-06T17:14:00.001-04:00

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

How time flies...

2011-06-01T09:05:00.003-04:00

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!!!!

2011-04-27T18:26:00.003-04:00

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!!!!!!

2011-03-23T07:57:00.000-04:00

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...

2011-03-18T18:15:00.002-04:00

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!!!

2011-03-18T18:14:00.000-04:00

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!!!!!

2011-03-18T18:13:00.002-04:00

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!!

2011-03-18T18:13:00.001-04:00

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...

2011-03-18T18:12:00.002-04:00

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...

2011-03-18T18:12:00.001-04:00

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...

2011-03-18T18:11:00.000-04:00

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...

2011-03-18T18:10:00.000-04:00

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...

2011-03-18T18:09:00.002-04:00

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...

2011-03-18T18:09:00.001-04:00

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...

2011-03-18T18:08:00.000-04:00

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...

2011-03-18T18:07:00.000-04:00

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...

2011-03-18T18:06:00.000-04:00

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

2011-02-28T21:06:00.000-05:00

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

2011-02-08T17:00:00.002-05:00

Micah's Dedication Video

2011-02-03T16:19:00.001-05:00

2011-02-02T00:36:00.000-05:00

An update...

2011-02-02T00:17:00.002-05:00

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...

2011-02-02T00:16:00.000-05:00

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

An adventurous few weeks...

2010-12-26T13:01:00.002-05:00

Two Saturdays ago, Micah came down with the croup and an ear infection. That was such fun. He spent one night at Wentworth Douglas Hospital. He was on antibiotics for a few days, but then the following Friday I was changing his diaper and he had a massive rash and some swelling in a VERY sensitive place. So off to the ER we went and we found out he had gotten a fungal infection from the antibiotics he was on to help his ear infection. Ironic isn't it? He had to be transfered to The Eliot Hospital in Manchester for an emergency circumcision. He spent one night there and was sent home. He was sore for a few days after and was doing a wide leg crawl for a while. He has been doing much better now and has even had his first Christmas AT HOME. If you remember, last year he was in Boston last year for his first Christmas. Thank you all for all of your prayers, support, love, and well wishes over this year. I pray God blesses you all in the following year. May you know nothing but Peace, Joy, and Happiness next year. Merry Christmas!!!!

Sorry for the lack of info...

2010-12-15T16:37:00.002-05:00

I'm sorry I haven't updated Micah's blog in a while. Life has found it's flow and it is a busy one. Micah has been doing great. Since his last surgery in May, he has managed to stay home and put on some real weight. He is 18 lbs 9.5 ozs and 27 3/4 inches long. He had his feeding tube removed a month ago and now he has a Mickey button to keep the whole open. He is crawling, cruising, and he can walk with a push toy. He has been doing great with physical therapy and Miss Hannah is amazed with his hard work. He still isn't talking yet but he'll be starting speech therapy soon. This past weekend he did have a little hiccup with his health. Friday he woke up wheezing and I tried to give him a breathing treatment but it didn't work. We eventually brought him to the ER and they thought he has pneumonia. They brought in a pediatrician who said he thought Micah simply had the Croup. They admitted him to Wentworth Douglas Hospital for the night and he was released the next morning. He thankfully only has the Croup and he is slowly recovering. There is some flu bug or whatever floating around, but hopefully he won't get it too badly. Thank you all for all of your prayer, love, and support over the last year with all of Micah's ups and downs.

MERRY CHRISTMAS !!!!!!!!!

Time to update...iijs

2010-12-08T14:24:00.000-05:00

More Micah Monuments!!!!!!!!

2010-08-18T21:25:00.001-04:00

MICAH TESTED AT A 12 1/2 MONTH COGNITIVE DEVELOPMENT!!!!!!!!! 4 months ago he was
only at a 6 month level. The psychologist was so impressed with him that she wants him to
start speech therapy right away!!!!!!! They usually wait until the baby is about 18 months
old, but since Micah is doing so well and wants to learn how to do so many things, she
wants to get a head start with him. We need to do a little more genetic testing, to see if
there is something we need to be aware of for later. But as of right now, MICAH IS ON
TRACK!!!!!!!!!

Micah's 1st year!!!!

2010-08-04T16:47:00.002-04:00

My sweet sister-in-law Susie made this movie for Micah's first year. It is incredible!!!!! There is a lot of love and a lot of great memories in it!!!!!!!

HAPPY BIRTHDAY MICAH!!!!

2010-08-04T08:13:00.001-04:00

MICAH IS 1 YEAR OLD TODAY!!!!!!!!!!!! I CAN'T BELIEVE THAT A YEAR HAS PASSED!!!!!!!! One year ago I was laying in a hospital bed in Germany listening to my doctor tell me I wasn't progressing and that my water had been broken for too long and they had to get my baby out by c-section. Then the "fun" really began when I woke up from surgery to find that my new baby wasn't even in the same hospital, but the child I had delivered two hours earlier; the baby I never saw or heard was somewhere in Nuremberg. He was sick and they didn't know what was wrong. Then they sent Jason in to see me and to tell me what was happening. He looked so worried. I have never seen a man so scared. He told me what he knew so far. Micah wasn't breathing and they sent him to Cnomp'Sche Kinderklinik to find out why. I thanked him for staying with me and told him I was okay and to go to Micah and to bring a camera so I could see my new baby. He went and was back a few hours later to tell me that Micah had Tetrology of Fallot and he would need heart surgery. Then he showed me the pictures of my beautiful new baby.

11 DAYS!!!!!!!

2010-07-24T12:57:00.001-04:00

One year ago we were just settling into our new home in Lichtenau, Germany, I was getting
ready for the boys to start school, and getting excited that I was a month away from having
a new little baby. 11 days later life changed. Micah was born and our world turned upside
down. Now a year has past and I am getting ready for the boys to start school, and I am
getting very excited that in 11 days Micah will be 1!!!!!! I still can't believe that a year has
gone by.

Update, 16 July....

2010-07-16T10:40:00.002-04:00

Let's see...since the last time I posted anything Micah has been doing quite a few things. He is rolling, crawling, pulling himself up to stand, starting to take a bottle sometimes, and eating baby food like a champ!!!!! He was last weighed at about 15 pounds!!!!! He has been doing physical therapy and working very hard at it. He is such a good baby. Jacob, Noah and Emily just adore him. They are so happy he is crawling now and that he can play with them more. I can't wait to see what is coming next!!!!! Thank you all for ALL of your prayers and support!!!! This has been a long and eventful year and I am so excited to think that in just a couple weeks Micah will be 1!!!!!!

HE'S GAINING WEIGHT!!!!!!!!

2010-07-01T17:04:00.001-04:00

MICAH IS 14 LBS 4 OZ!!!!!!!!!!!!!!!!!!!!!!!! THE NURSE WAS JUST HERE AND MICAH HAS GAINED 1 LB 6 OZ!!!!!!!!!!!!! SHE WAS HERE A WEEK AGO AND HE HAS GAINED MORE THAN A POUND IN 1 WEEK!!!!!!!!!!!!!!!!!!!!!!! I CAN'T BELIEVE IT!!!!!!!!!!!!!!!! IF HE KEEPS GAINING LIKE THIS HE'LL BE BACK ON THE GROWTH CHART BY THE TIME HE'S ONE!!!!!!!!!!!!!!!!!!!!!! Micah is trying to crawl!!! He is getting up on his hands and knees and and then slides down. He looks like an inch worm!!! Micah had his Plastic's appointment in Boston today and the doctor was thrilled with how well Micah has healed!!!! He doesn't want to see Micah again until he's 18 months old!!! I'm so glad we are FINALLY in the home stretch!!!! He still needs to have work done on his pace maker, but that will be it until he's about 15 when he needs a valve replacement.

Going home!!!!!

2010-05-29T09:44:00.001-04:00

WE ARE GOING HOME!!!!!!!! THE PLASTICS TEAM JUST CAME BY AND THEY SAID MICAH LOOKS AWESOME!!!!!!!!!!!!! HIS NURSE IS TRYING TO GET ALL THE PAPERS TOGETHER SO WE CAN GO HOME SOON!!!!!!!!!!! I AM SOOOOOOO EXCITED!!!!!!!!!!!!!!! MICAH IS ACTUALLY FOLLOWING THE PLAN!!!!!!!!

8 East.....tomorrow going home

2010-05-28T14:14:00.000-04:00

Micah is on 8 East!!!!!! He is doing great!!!!!! He got a little rash from the ampcilin that he was on, but some Benadryl cleared that up nicely!!!! He is resting now, no IVs going and they are feeding him at almost full strength!!!! It looks like we are going home tomorrow!!! The plastics team wanted to send him home today, but the cardiac team said no. Much better to be safe than sorry!!!!!

Finally resting!!!

2010-05-27T18:54:00.001-04:00

Micah is finally resting!!! After his surgery he was very upset and uncomfortable. It has taken most of the afternoon, but the doctors and nurses have found the point where his pain is manageable and he has exhausted himself. He is drifting in and out of sleep now. I also think he has his hearing back!!!! He has been jumping and responding to noises he never would have noticed before!!!! Yay!!!!

Out of Surgery!!!! (and more good news!!!!)

2010-05-27T12:26:00.000-04:00

MICAH IS OUT OF SURGERY!!!!!!!!!!!! EVERYTHING WENT PERFECTLY!!!!!!!!!!! THE EAR TUBES ARE IN, THE PALATE IS CLOSED AND HE IS RECOVERING ON 8 SOUTH!!!!!!!!!!!!!!!!!!!!!!

Dr. Meira and Dr. Cavanagh were both VERY impressed with how well Micah did!!!!!! The anesthesiologist was also very happy with how well Micah went under and woke up. Apparently Micah woke up very angry and with some fight in him. A very good sign!!!!! Now he needs to rest!!!!!!!!!! Thank you all for all your prayers!!!!!! They worked!!!!!!!

2 down, 1 to go!!!!!!

2010-05-27T08:37:00.001-04:00

The ENT doctor was just here to talk to us!!!! Micah is doing great!!! The tubes went into
his ears just fine!!! There was more fluid in his right ear than his left, but they were able
to drain it all and in about a month we'll bring him back to check his hearing again. They
also checked his throat and that is looking awesome too!!! The stenosis has not
worsened and has actually improved a little!!!! Dr. Meira (Plastic Surgeon) has begun the
repair to Micah's palate and that will take about 1 1/2 hour-2 hours. Please keep the
prayers going!!!! They are working!!!!

Starting the day with a miracle!!!!

2010-05-27T07:55:00.000-04:00

God works miracles!!! Our alarm clock did not go off this morning and we ended up missing every bus that would get us here on time. So we had to drive, without maps or GPS. There was almost no traffic, almost all green lights, and I didn't get lost!!! We got here with 10 minutes to spare. Micah is on his way to the OR now!!! All of the doctors and nurses look well rested and ready for Micah. They are all very confident that Micah will be just fine before during and after the surgery. They are closing his palate, placing tubes in his ears, and checking the stenosis in his throat. I know God is with my baby now as much or more than He was when He got us here safely. Please Pray!!!!

24 hours left...

2010-05-26T13:48:00.000-04:00

In about 24 hours, Micah will be recovering from his next surgery. Tomorrow morning he goes in to the operating room to close his palate cleft and to place tubes in his ears. This surgery will hopefully help him to eat like a normal baby and then the GJ tube can come out. We will also find out if he does or does not have hearing. Please pray for Micah and the surgeons working on him!!!!!

Another normal appointment.....

2010-05-20T13:36:00.000-04:00

We just got back from Micah's appointment. He is doing really well. He's still not in a percentile, BUT he is growing. Dr. Gates was SO happy to see him and to see that he actually has NOT been in the hospital in a little over a MONTH!!!! His lungs are clear and his heart is as noisy as ever. (always good) He did get his H1N1 and Flu shots today. And that is good since he'll be in the hospital in 1 week.

An incredible difference...

2010-05-19T09:47:00.003-04:00

Here are the pictures from Micah when he was in the Cnopf' Sche Kinderklink in Nuremberg, Germany, the day after his first heart surgery and now. He'll be going back into surgery to repair his cleft palate and to place tubes in his ears next Thursday. Hopefully it'll be the last surgery until the end of the year when his pace maker needs to be replaced.

All clear!!!!

2010-05-13T09:52:00.001-04:00

Micah is clear for his next surgery. His heart is strong enough to handle the procedure. He has also put on the weight he lost from his hospital stay in April. So on May 27th he'll be going back in to the Operating Room to repair his cleft palate and to place tubes in his ears. Everyone is extremely happy with the progress he's making.

HE'S PUTTING ON WEIGHT!!!!!!

2010-05-12T22:00:00.000-04:00

MICAH HAS CROSSED BACK INTO THE 13 LBS RANGE!!! I AM SOOO EXCITED!!! HE'S BEEN FIGHTING TO REGAIN HIS WEIGHT SINCE APRIL!!!! I COULD NOT BE MORE PROUD OF MY TINY MAN!!!! So far pre op day is going well. He's really sore from his tube change though. Hopefully it'll pass!!!

Tomorrow, tomorrow...

2010-05-11T19:54:00.001-04:00

Micah is going to Boston Children's Hospital tomorrow for his Pre Op Day. His is due to have surgery on his cleft palate and tubes placed in his ears. Even though this is a "minor" surgery I am still very nervous for my baby. On May 27th Micah will be entering operating room for the 5th time in his short life. Please pray that all goes well tomorrow and on the 27th.

MORE GOOD NEWS!!!!!!!!!!!

2010-05-07T16:07:00.000-04:00

Micah had his echo this afternoon. It took a little while to get him calmed down and asleep (LONG night last night), but the tech was able to get some really good pics of Micah's heart. And guess what, HIS HEART IS IMPROVING!! HIS PULMONARY ARTERY IS GROWING AND GETTING WIDER, THE PRESSURE IN HIS HEART IS DOWN AND SOME OF THE LEAKS AROUND HIS VSD PATCH HAVE CLOSED!! HE IS CLEAR FOR HIS NEXT SURGERY!!

9 months old!!!!!!!!

2010-05-04T20:52:00.002-04:00

Today Micah turned 9 months old!!!!!!!!!!!! And he's home for it!!!!!!!!

Just a couple of days.....

2010-05-02T09:04:00.002-04:00

On Tuesday May 4th, Micah will be 9 months old!!! He is such a tough little baby!!! Some days are easy and some days he has had to fight hard, and so far he's winning!!!! He is still WAY smaller than most 9 month old babies, but he is slowly getting bigger and stronger. This is going to be a busy month for him, he has appointments in Boston and here in NH every week this month. It is all to get ready for him next surgery. On the 27th he'll be going back in to the Operating Room to close his Cleft Palate and to place tubes in his ears. Compared to his past procedures, it's a minor surgery but I don't think anyone can say that an operation on their baby is minor. It's always scary. He is a tough little guy and I know God will protect him through it. This surgery will make it so he has suction and will, hopefully, be able to start eating as a normal baby. He should only be in the hospital for a few days, but the last time I was told that he was in the hospital for 3 weeks and again for 5 weeks.

Unfortunately we can't say this is his last procedure. There is scar tissue developing around the leads of his pace maker and it is forcing the pacer box to draw more power from the battery than normal. He only has about a year left of the battery. So they are going to have to go back into his chest to replace the battery and to clear away some of the scar tissue. Thankfully it won't be until maybe the end of this year/beginning of next year. I'd really like to keep my baby home for more than a couple months. I am looking forward to celebrating another birthday with Micah in our home. Isn't is amazing how the months fly by with babies?

DEAD LINE!!!!!!

2010-04-20T14:10:00.002-04:00

WE ARE WALKING IN THE N STAR WALK FOR CHILDREN'S HOSPITAL!!!!! WE HAVE FORMED TEAM MIGHTY MICAH!!!!!!!!! BUT THE DEAD LINE TO GET DONATIONS IS COMING UP FAST AND WE NEED A LOT OF HELP!!!!! PLEASE HELP US HELP THE HOSPITAL THAT SAVED OUR SWEET MICAH'S LIFE MANY TIMES!!!!!!!!

Directing friends and family to this Web page

To direct potential sponsors to this page, copy and paste this address into your emails:

https://howtohelp.childrenshospital.org/walk/pfp/?TeamID=KS0056

The address in your browser's address bar does not link up to your fundraising page.

Children's Hospital Boston - NSTAR's Walk for Children's Hospital Boston 10 - 's Page

2010-04-16T12:36:00.000-04:00

Children's Hospital Boston - NSTAR's Walk for Children's Hospital Boston 10 - 's Page

Many many WONDERFUL updates!!!

2010-04-09T17:57:00.001-04:00

MICAH HAS BEEN DISCHARGED!!!!! WE ARE ON THE TRAIN GETTING READY TO HEAD BACK HOME NOW!!!!!!!!!!!!! We'd already be heading back if the cab driver I got didn't take the LONG "scenic" route through Boston. He sure ran up the meter too, we missed our original train. But we are on the train now, and VERY excited to be going home again!

I got Micah's nebulizer!!!!! We are one step closer to coming home...I already got our train ticket and Micah's nurse just took out his IV!!!!! YAY!!!!!

We got the date for Micah's next surgery...On May 27th Micah will be going back into the Operating room to have the cleft in his soft palate and to have tubes placed in his ears...it's a more minor surgery (if surgery on your baby could ever be considered minor)...but this will, God willing, be his last surgery....hopefully the rest of his life will be nothing more than a few periodic procedures

Going home!!!!! (maybe)

2010-04-09T10:05:00.000-04:00

So.....yeah.......Dr. Brown was just here (Yay!) and he said the Micah is looking
REALLY good....He and the other doctors are thinking about sending him
home....possibly today....They are trying to track down a take home nebulizer....Micah
had a mucus plug stuck in between his nose and throat that was obstructing his
breathing...They are still chalking up the other times he stopped breathing to reflux, but
now they are treating his breathing troubles separately....which is good...Micah has a
cold which has hit him kind of hard, but he is looking SO MUCH better....He has been
able to tolerate his feeds and keep his SATs up on his own and he's also not getting
exhausted from just trying to breathe....which means he has met the requirements the
doctors set for him to go home...He has worked hard and had to put up with having his
nose mouth and throat vacuumed out every two hours like a champ...He is a fighter!!!

A mini update....

2010-04-08T14:12:00.001-04:00

Micah's nurse was just here and one of the viral tests came back negative. YAY!!!! We are still waiting on one more. But they are thinking he had bronchiolitis, which is just a viral infection of the lungs. Also his white count is back down to 10 which is normal. It looks like his body is fighting this thing, we just need to know what it is.

Breathing!

2010-04-08T09:13:00.000-04:00

The cardiology team was just here! His heart is still doing awesome! Yay! They are
treating this as a virus. Unfortunately there is no medicine to fight viruses, you have to
fight them yourself. His white cell count is up to 17, so something is definitely brewing
inside him. He will stay here in the hospital until he can keep his oxygen SATs up, can
tolerate feeds without hurting his breathing (which shouldn't happen anyway) and he can
breathe well without tiring out. Right now he definitely can't do that. They will still be
giving him breathing treatment around the clock, and in a little while they will be
restarting his feeds. Yay! Unfortunately what is a minor annoyance cold for us, could
turn into pneumonia for him. They are working very hard to keep that from happening.
After every breathing treatment he gets, they do chest PT on him and then suction his
nose and throat to clear away the mucus. That will hopefully help it to not settle in his
lungs. He's still coughing well, which is a wonderful thing. Please pray for his continued
strength to breath on his own!!!!!

Quarantined!!!!!!

2010-04-08T00:48:00.000-04:00

He is doing okay right now, but they have quarantined. They think he may have a respiratory virus and it is making very difficult for him to breathe. He has very noisy breathing and he is working hard for air. He is under many precautions to keep new germs from coming his way. He is NOT on oxygen, which is a good sign. Please pray that the results of the virus cultures come back soon so they can start treating him!!!
Hopefully by morning some of his tests will have come back. They are treating him with nebulizers and giving him IV fluids. He tolerated his feeds today very well, but they have stopped them for now just to give his body a break. I am staying with him, and I can see just how restless his sleep is. He is pulling hard for air, but his stats are still in the mid to upper 90s. PLEASE PRAY THAT HIS LUNGS OPEN SOON!!!!!!!!!!!!!

Yet another horrible night, and back to Boston!!!!!!!!!!!!!

2010-04-07T10:42:00.001-04:00

MICAH IS IN AN AMBULANCE HEADING BACK TO BOSTON NOW!!!! HE BEGAN STRUGGLING TO BREATHE AGAIN AND TURNED GRAY!!!! PLEASE PRAY THAT THE DOCTORS FIGURE THIS OUT AND EASE HIS BREATHING!!!!

Micah arrived at Children's in Boston about 4am this morning. He is stable. Susanne will be going down sometime today. Keep her in prayer too as she sprained her wrist in a fall last night. Thanks everyone!

Children's Hospital Boston Walk!!!!

2010-04-05T16:39:00.002-04:00

This June we are walking in the N Star Fundraising walk for Children's Hospital Boston. We have created Team Mighty Micah!!!! This hospital has done SO many wonderful things for our little man and have saved his life in more ways than I can count. Please donate to this wonderful cause and more wonderful hospital if you can! I would love to give something back to the Doctors and Nurses who work so hard and NEVER give up on Micah or any of the other thousands of patients from all over the world that they see every year. They truly are Angels sent by God!!!!

https://howtohelp.childrenshospital.org/walk/pfp/?TeamID=KS0056

Copy and Paste this above site to your Address Bar and donate what you feel led to give. Thank you SO very much!!

Growing, growing, growing!!!!!!!!

2010-03-30T18:00:00.002-04:00

MICAH IS HOLDING STRONG AT 13LBS 3OZ!!!!!!!!!!!!!!!!!!!!!! HE'S GAINING WEIGHT!!!!!!!!!!!!!!! HE'S GETTING STRONGER!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! HE EVEN SAT IN HIS TOY CHAIR AND PLAYED FOR A WHILE BEFORE HIS MUSCLES GOT TOO TIRED HOLDING HIM UP!!!!!!!!!!!!!!!!!!!! Micah's visiting nurse was just here and she said he's doing AWESOME!!!!!! I am SO happy he is finally putting on the pounds!!!!!!!!!!! This means he has nearly tripled his birth weight in almost 8 months!!!!!!!!!!!! He has been doing really well at home for the last couple of weeks and he hasn't shown any signs of trouble ahead. Fingers crossed that he stays that way!!!!!!!!!!!

SO VERY ICKY!!!!!!!!!!!!!

2010-03-21T21:50:00.000-04:00

Micah's G-tube came out this morning. This is the tube that goes through his abdomen directly into his stomach. That means that for about 2 hours this morning there was an open HOLE coming out of my son's stomach. There are so many horrible things that can happen with something like that. So Jason and I dropped the older kiddos off at their grandparents house and we set out for Boston to figure out what to do next. Thankfully we didn't have to wait at all. They took him right back and checked out the HOLE. It had already begun to heal/close. So they had to use balloon catheters to open the HOLE up wider so they could place a new tube. He screamed, Jason held him down, and I sat in a chair feeling like I would faint or get sick. (I was so helpful) He's been fine since then, but it was all very unnerving. Especially when I removed his gauze this morning and saw the HOLE for the first time. Very EWWIE!!!!

MICAH'S GOING HOME TODAY!!!!!!!!!!!!!

2010-03-14T11:04:00.000-04:00

YOU WILL NEVER GUESS WHAT MICAH'S NURSE JUST TOLD ME!!!!!!!!!!!!!!!!!!!!!!!! MICAH IS BEING RELEASED TODAY!!!!!!!!!!!!!!!!!!!!!! MICAH IS GOING HOME!!!!!!!!!!!!!!!!!!! WE ARE COMING HOME!!!!!!!!!!!!!!!!!!!! DR. BROWN THINKS THIS WAS JUST SOMETHING YUCKY CAUGHT IN HIS THROAT AND HE ASPIRATED IT AND THAT HE IS GOING TO BE OKAY!!!!!!!!!!!!!!!!!!!!!!!!!!!! MICAH'S GOING HOME!!!!!!!!!!!!!!!!!!!!!

Another bump...

2010-03-12T14:16:00.000-05:00

Okay, slight hiccup. They were only going to keep Micah in the CICU (they made room for him) for a couple hours to watch him, but unfortunately while they were settling him in he got really upset and desated to the 40s. They are still going to continue to watch him, but he may stay in the CICU for longer.
They still have no idea what's causing all of this to happen. Please pray that they find something soon. He hasn't eaten since midnight, so I know he's hungry, so they are going to replace the NJ tube and begin feeding him in a few hours. Thankfully he's sleeping peacefully now.

Out of the OR

2010-03-12T14:15:00.000-05:00

Micah just came out of the OR!!!!! His throat is a little narrow, but nothing anywhere near bad enough to cause him to stop breathing. It's good news and bead news. I'm thrilled his throat is fine, but now we still don't really have a clear idea of what's going on with him. I don't know what the next move is yet. I'll have to talk to Dr. Brown again. Thank you for all your prayers!!!!!

In Surgery...PRAY!!!!!!!

2010-03-12T11:52:00.001-05:00

They just took Micah back into the OR. They were so kind and waited for me to get to the Pre Op area before they took him back. I got to see him and give him a kiss and he gave me one of his wonderful big toothless grins. The nurses and doctors have all fallen in love with him and have even threatened to take him home with them. LOL. I know they will take great care of him and bring him back safely to me. If they cannot extubate him after the Bronch Scope is done he will be sent to the ICU on the 7th floor (no room in CICU) until he is able to breath on his own again. But he came out of his last Bronch Scope like a champ and I am not expecting anything less from the Mighty Mr. Micah Man. Baby Mommy Loves You!!! Please pray, that they find whatever it was that stopped his breathing a couple days ago!!!!!!!

A visit from Dr.Brown

2010-03-11T19:19:00.000-05:00

Finally saw Dr. Brown today. He spent the day bouncing between GI and General Surgery. Right now there are about two ideas. Doing the stomach wrap and placing a GJ tube. Jason and I are violently against the GJ tube, considering it did him so much harm in December. Hopefully ORL will find something and then we will have a better idea of what is going to happen next and what it will take to feed the sweet little baby.

To the OR tomorrow...

2010-03-11T19:09:00.001-05:00

Okay so now we have a plan (of sorts) ORL was just here and they took a look at Micah and we chatted a bit. They were originally planning on doing another Bronch Scope and Balloon Dilation on Monday, but now they have him scheduled for tomorrow. This does mean going into the OR and being intubated. But this may give some clues to what happened the other night. I hope it does. We need to know what's happening to him.

Update

2010-03-10T15:02:00.000-05:00

Okay, here's an update. Micah is on 8 East, NOT THE CICU. (YAY!!!!!) Micah is doing well right now. He's off the oxygen and breathing well. They are going to place an NJ tube for right now so that they can get him fed. (Which he will appreciate) The docs here need to get with GI (since GI doesn't want the G tube used at all) and general surgery. They need to decide whether or not to do the stomach wrap, especially since he's had ANOTHER aspiration event. It's too risky leaving things the way they are. Please pray the docs make wise decsions!

Update

2010-03-10T10:30:00.000-05:00

This was from Susanne an hour ago; On the train now, heading to Boston. I spoke with one of the ER docs this morning around 3:30 and they told me he was stable and that they were going to be admitting him this morning. Apparently while he was in the ambulance he DeSated to about 70. For those who don't know, that means he wasn't getting enough oxygen to his blood and at 70% he was pretty grey. He was able to bring himself out of it though.

Update On Baby Micah

2010-03-10T07:03:00.002-05:00

Micah is back at Children's Hospital Boston. He is still in the ER in Boston and he will be admitted this morning. Sounds like he stopped breathing at home and 911 was called. He is stabilized now and they are trying to figure out what happened. Susanne will be on her way to Boston this morning to be with him. Pray for her safety on the roads. Pray for the doctors and nurses who will be taking care of him today. I will update when I know more. Thanks for praying!!

Urgent Prayers Needed

2010-03-09T22:48:00.001-05:00

Please be praying for Micah tonight. He is taking a ride in the ambulance right now to the hospital. I am not sure what exactly happened yet but he needs our prayers. Pray for Jason and Susanne to as well as the doctors and nurses that are taking care of him. I will update for them when I have more information. Thanks!!!

Children's Hospital Boston...

2010-03-08T22:38:00.000-05:00

https://howtohelp.childrenshospital.org/walk/pfp/?Teamid=KS0056

This is the address for Team Mighty Micah!!!! We are participating in a fundraising walk to
benefit Children's Hospital Boston, for all the wonderful care they have given to our sweet
little Micah. It is a wonderful cause and IF you feel led to do so, please donate, or if you
would like to you are welcome to come and join us on our 7 mile walk. It would be great for
us to have a nice big team to walk for Micah. Thank you for all your prayers and support over
the last 7 months. They have been more than appreciated and they have worked miracles.
God has heard the prayers and brought Micah through some amazingly hard challenges and
I know God will continue to work many more miracles in Micah's life. He has something huge
planned for our sweet little baby.

THE MOST AWESOMEST NEW EVER EVER!!!!!!!!!!!

2010-03-04T17:16:00.002-05:00

IT HAS FINALLY HAPPENED!!!!!!!!!!!! MICAH PASSED HIS SWALLOW STUDY WITH FLYING COLORS!!!!!!!!!!!!! THEY GAVE HIM BOTH BABY FOOD AND A SIPPY CUP AND HE JUST SUCKED IT ALL DOWN!!!!!!!!!!!!!!!! HE HAS FINALLY BEEN GIVEN THE OKAY TO TAKE SOME FOOD AND FORMULA BY MOUTH!!!!!!!!!!!!!!!!!!!!! HIS SWALLOW HAS RECOVERED!!!!!!!!!!!!!!!!!!!!!!! HE'S OKAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

7 WHOLE MONTHS!!!!!!!! IT'S INCREDIBLE!!!!!!!!

2010-03-03T23:17:00.000-05:00

Tomorrow Micah turns 7 months!!!!!!!! I am SOO excited!!!!!! He spent his entire 6th month at home!!!!!! Tomorrow we will be spending the day in Boston. He's got check ups with 3 different departments and then a swallow study somewhere in there. Hopefully if he passes that study we might be able to start giving him a bottle again. Emily gave him a baby cookie the other day and he LOVED it!!!!! He nummed that thing so much!!!!! He was so messy when he was done. VERY CUTE!!!!! Oh and please pray for Noah! His throat is starting to hurt, and I'm afraid he may have caught Strep Throat from Jacob.

WOW!!!! 3 WHOLE WEEKS NOW!!!!!!

2010-02-21T15:15:00.002-05:00

So...yeah...Micah has been home for a whole 3 weeks!!!!! It's amazing how well he's doing!!!! He's setting new records!!!!!! I am so excited!!!!! Not getting my hopes up, but I think Micah is over the worst f his troubles for now!!!!!! And all his siblings are loving having him home....right now they are all on my bed and saying "hi" and showing him their toys and begging him to look at them...it's too cute!!!!!! I am so happy they love each other so much!!!!! Keep going Micah, we love having you home!!!!!

A WHOLE 2 WEEKS!!!!!

2010-02-13T09:42:00.001-05:00

AS OF TODAY MICAH HAS BEEN HOME FROM THE HOSPITAL FOR A WHOLE TWO WEEKS!!!!!!!!!!! THIS IS THE LONGEST HE'S BEEN HOME SINCE NOVEMBER 2ND!!!!!!! HE IS STILL DOING AWESOME!!!!! TOLERATING HIS FEEDS AND EVEN ROLLING OVER!!!!!!!! HE IS MAKING AWESOME PROGRESS!!!!!!! HE'S NOT DUE BACK IN THE HOSPITAL FOR AT LEAST ANOTHER MONTH, SO I'M REALLY HOPING HE MAKES IT THAT LONG!!!!!!!!!!

6 Whole Months!!!!!

2010-02-04T13:26:00.001-05:00

Wow....6 months ago I was in a hospital in Germany recovering from an emergency c-section...I had just given birth to a beautiful baby boy (though I hadn't seen him) at 5lbs...Although it has been an incredibly bumping 6 months, with many many many ups and downs, I wouldn't trade my sweet little Micah man for the world...Especially since, while I wrote this, he rolled over for the first time!!!!!!!

Home again....

2010-02-01T09:11:00.001-05:00

Micah came home last night. After about 3 nights of not sleeping, then a night in the hospital, he slept all day yesterday and all last night. He looks a million times better this morning. He was up at about 5 am, which is fine because Jason had PT so I was up anyway.

Back In Boston

2010-01-30T20:59:00.000-05:00

They checked out Micah at the drs. Nothing significant going on other than the fever. They did however need him to go back to Boston to have the feeding tube put back in. Susanne and Rachel went down with Micah. There isn't anyone there to do it tonight, so they are admitting Micah for the night and doing the NJ tube tomorrow. They're starting him on an IV to give him the fluids he needs in the meantime. Once Micah is admitted, Susanne and Rachel will head home.

Please pray this will be a quick stay.

Going to the pediatricians

2010-01-30T10:35:00.001-05:00

We're getting the three older kiddos ready to go to Oma's house. Micah's pediatrician's office has an opening this morning so we are taking him in, he still has a fever and he managed to yank his NJ tube. Hopefully they will be able to place it again, NJs are harder to place than NGs. They have no problem placing NG tubes. And last night was beyond horrible. Micah was crying and fussing all night long, which is bad in itself, but last night I managed to develop an ear infection. It's one of those where any sound over a whisper is like jamming a hot poker in your ear. This is going to be a long day.

Still home....but not very happy

2010-01-29T16:41:00.002-05:00

The last few nights Micah has been awake and mad, which of course leaves us awake. This morning he spiked a fever. It started at 100 degrees and now it's up to 101 degrees. He has no other symptoms other than fever and misery. I'm thinking it's because he's teething (my big kids did the same when they teethed) but to be on the safe side I called Dr. Brown and Dr. Gates' office and spoke with a Pharmacist. They all agrees, separately, to just alternate the Tylenol and Motrin for the day. Dr. Brown and Dr. Gates' office are going to call tomorrow to check on him. As long as he doesn't develop any other symptoms he doesn't need to go to the ER. I am really praying this is nothing serious, he hasn't even been home for a week. PLEASE PRAY!!!!

HE'S COMING HOME!!! HE'S COMING HOME!!! HE'S COMING HOME!!!!!!

2010-01-23T10:53:00.000-05:00

I JUST GOT OFF THE PHONE WITH MICAH'S NURSE!!!!!!!!!!!! THEY ARE GOING TO SEND HIM HOME TODAY!!!!!!!!!!!!!!! I CAN'T BELIEVE IT!!!!!!!!!!!!!!! HE'S ONLY BEEN IN THE HOSPITAL FOR 1 WEEK AND HE'S COMING HOME!!!!!!!!!!!!!!!!!!!!!!! I AM SO EXCITED!!!!!!!!!!!!!!!!! I CANNOT WAIT FOR HIM TO COME HOME!!!!!!!!!!!!!!!!!!!!!!!! I HAVE MISSED HIM SOOOOOOOOOOO MUCH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Making progress....

2010-01-22T09:38:00.001-05:00

Okay, here's the scoop, Micah went in for his throat procedure today. He had a 60% narrowing in his throat. They took him too the operating room and they found that having the tube in his throat had already stretched his throat enough to where there was only a 30% narrowing which is reasonable (according to the doctors). Now we just have to put in an NJ tube and get him back on his feeds.

Micah had a great night last night. He slept well and is comfortable now. GI is supposed to see him today, which will be nice. He's also going to be moving to 8 East again today. I am so happy about that. If he keeps up the good work, then he may come home soon!

Just one more thing....

2010-01-20T19:00:00.000-05:00

I just got a call from the ENT doc. They got done with the Bronch Scope and for that, just below his vocal cords, he has a 60% narrowing of his airway called Sub-glottal Stenosis. They are leaving him intubated tonight and bringing him back to the OR tomorrow. They are going to try to remove the scaring and dilate his throat.

Micah is out of the Cath Lab!!!!!! He did great and they were successful in dilating his pulmonary artery!!!!!! He came out of the anesthesia well too and is on his way up to the CICU!!!!! Now he will stay intubated for tomorrow. Hopefully this will bring him one step closer to being done with this and coming home.

Back in the hospital....again

2010-01-19T17:10:00.002-05:00

All of the following began Saturday night....the last paragraph is from today

UNBELIEVABLE!!!!!!! HERE WE GO AGAIN!!!!!!! Micah began struggling to breath tonight and so we rushed him back to the local ER. Once again they were not comfortable treating him so now he's on his way back to Boston. (By Ambulance This Time) Jason and I are driving down tonight to see what will happen next. I think he's fine now that he's gotten a breathing treatment and coughed.

I just got off the phone with Micah's nurse...he had a good night last night...he's on a tiny bit of oxygen, just to keep his O2 stats up....He is up to his full feeds again (and I know he appreciates that)...The plan for today is to move him back out to the main cardiac floor....which is always good....unfortunately no firm plans will be made about Micah until tomorrow

Jacob, Emily and I went to Boston today to visit Micah. He's on the main cardiac floor now and completely off the oxygen. He goes to the Cath Lab tomorrow. He'll have his pulmonary branch dilated and have a Bronch Scope. Hopefully we'll get some answers. Jacob and Emily were so excited to see Micah again. When we got there, there was a volunteer talking to Micah. When he saw me he smiled and arched his back, like he wanted up. Then Jacob said "Hi baby Micah" and Micah just lit up! it was really sweet.

Sorry it took so long to update....life has been really crazy here

A normal appointment.....

2010-01-13T16:06:00.001-05:00

We're back from Micah's pediatrician appointment. He is 11lbs 3oz (the last weight was wrong) He's still REALLY small for his age but Dr. Gates is really happy to see how well Micah is doing. He did get a couple of his shots today, so he's in a bad mood now. He's been home 1 week today. As long as we can get through this day it'll be the longest he's been home since November. I REALLY hope we make it!!!!!

A normal appointment coming...

2010-01-11T21:37:00.001-05:00

Micah is still doing great...He's had a few rough spit up moments, but nothing horrible...Wednesday he has an appointment with Dr. Gates for a 4 month well-baby...it's so nice taking him to a normal baby appointment!!!!!

THE AWESOMEST NEWS EVER!!!!!

2010-01-07T20:17:00.000-05:00

This those who may not know............................HE'S HOME!!!! HE'S HOME!!!! HE'S HOME!!!!! HE'S HOME!!!!! MICAH IS HOME!!!!!!!!!!!! HE WAS DISCHARGED FROM THE HOSPITAL YESTERDAY AND IS DOING GREAT!!!!!!!!!!!!!!!! HE'S HOME!!!!!!!!!!!!!!! He's on continuous feeds, but that is fine. The visiting nurse was here today and he weighs in at a nice 11lbs!!!!!! I am so proud of him!!!!!

Discharge update....

2010-01-05T17:21:00.002-05:00

The central line is out!!!!!! Micah is finally snoozing!!!!! There is a meeting with all of Micah's teams and I at 4pm and hopefully form up a plan.

Okay, so here's the plan...because Micah needs an echo tomorrow and GI and Surgery didn't show up for the meeting,and the limited trains we won't be officially discharged until Thursday morning...All the paperwork will be done and ready to go tomorrow and we'll leave Thursday morning bright and early...good meeting though...got a lot of cardiac questions answered.

NO MORE SURGERIES FOR MICAH!!!!! (at least for now) The surgeons were just in to see me and they told me that they have NO intention of putting the J tube back or to the stomach wrap surgeries. This means that Micah won't see the inside of an Operating Room until he is 9-10 months old, when he gets his oral surgery and has tubes put in his ears. And the ENT docs will wait until then to do the bronch scope.

Going home!!!!!

2010-01-05T12:57:00.001-05:00

Micah was just seen by Physical Therapy. He did really well. He's showing that he wants to roll over and do all the things a normal 5 month baby does. The Therapist wants to work with him some more and have someone else work with him when we go home. He will also be getting his central line out today. Yay! Making progress for home!!!

WE ARE GOING HOME!!!!!!! EITHER TODAY OR TOMORROW WE ARE GOING HOME!!!!!!!!!!! MICAH IS WELL ENOUGH AND HAS GAINED ENOUGH WEIGHT TO GO HOME!!!!!!!!!!!!!!!!! MICAH IS GOING HOME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Tummy Test...And 5 Months Old

2010-01-04T18:42:00.001-05:00

Since Micah is teething, he had a rough night...But now he's hungry and he has to wait a few more hours to feed again...Today is his gastric emptying test....finger crossed that it goes well.

Happy 5 Month Birthday to my sweet baby Micah!!! It stinks that you are spending another birthday in the hospital, but I know you are getting better and will go home soon. I love you baby!!!!

Dr. Brown was just in and he told me that Micah passed his gastric emptying test!!!!! He also said that he wants the central line out tomorrow. This means we are close to going home. Hopefully on Wednesday GI, Cardiology, Surgery, and I will be able to meet and FINALLY be able to make a plan for Micah to eat. He'll get either continuous feed or bolus feeds. I hope to be home by Sunday, Jacob turns 6 on Sunday.

Teething and other fun stuff...

2010-01-03T11:20:00.003-05:00

The surgeons came to see him this morning to see how his stomach is healing. I heard one surgeon say "He is really healing well." Then she asked me how his feedings have been, and I told her that he has been doing great and not even spitting up. She said that was great and "we may not need to do anything else to him." This may be a cruel tease from the surgeons, but I have my fingers crossed.

It's official...Micah is teething! Such awesome timing. Thankfully this is something they can easily ease for him. And this is one of those milestones that he can make while laying on his back in a hospital bed. Now we just need to figure out what to do with "tummy time" and sitting up and stuff. But I am kind of happy that he's teething.

Micah is 10lbs 6 oz!!!!! He is packing it on since they put him on the IV calories last week!!!!! The continuous feeds are helping too. Tomorrow he will have the gastric emptying test done and that will hopefully help form a more concrete plan....such fun

One Month To The Day!!!

2010-01-02T21:16:00.000-05:00

Micah is in a good mood today! He has been smiling at everyone who has come to see him! He is such a little flirt! They are increasing his feeds to 15 ml an hour, and if he tolerates it well, then tomorrow he'll go to 20 ml. They are leaving the IV calories and fats going too. The doctors said they want him getting as much as possible. He even looks like he's filling back out again. His cheeks are chubbier!

About 8:30-Exactly one month ago today,Micah threw up and aspirated. He went grey,limp,and could not get air.After spending 6 hours in the ER in NH he was air-evac'd back to Boston Children's Hospital after only being home 1 week. After a month of fighting against breathing tubes,pneumonia,having multiple feeding tube failures and emergency surgery,and starvation Micah sleeps without the help of Atavan. It's amazing

FOOOOOOOOOD!!!!!!!

2009-12-31T17:22:00.002-05:00

Micah had a good night last night. Very peaceful, despite his room mate crying a bit. Not sure what the plan is for the day yet. I'm hoping it's the gastric emptying, that will put us one step closer to full feeds, Micah putting on weight, and then eventually going home. Fingers Crossed!!!

THE GI DOCS WERE JUST HERE AND THEY ARE GOING TO FEED MICAH TODAY!!!!!!! They are going to start out slowly to see how his tummy handles it, but this means he's finally going to be fed, he's finally going to feel good again (without meds), and he's finally going to put on some weight! I am SOOOOOOOOOO happy! The GI docs finally got to see Micah in his "I'm hungry and I'm mad" mood and they are going to FEED HIM!

Dr. Gauthier is one of the best and sweetest cardiologists out there!!!! She called us at the hospital this morning to wish us a Happy New Year and just a couple minutes ago, we got a special delivery for her and her office. She sent Micah a Get Well Soon balloon and a very cute stuffed bear. She is SO sweet!!!! I am SO glad she is Micah's doctor and she cares so much for him.

MICAH IS GETTING HIS FIRST MEAL, IN A WEEK AND A HALF, RIGHT NOW!!!!!!!!!!!! HE ALREADY LOOKS HAPPIER AND MUCH CALMER!!!!!!!!!!!