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

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!!!!!!!!!!!!!

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!!!!!!!!!!!!!

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...

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

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!!!!!!!

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

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...

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

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

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

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

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...

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!!!!!!!!!!!

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!!!!!!!!

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.