Micah Is Home!!!!!!!!!

HOME!!! HOME!!!! HOME!!!! THERE IS NO PLACE LIKE HOME!!!!!!!!!! I love all the nurses and doctors and techs who worked so hard and with such care and concern for my son's health. They are such wonderful people, and I am so glad they decided to do such wonderful works with their lives. I am truly grateful and thankful for all they have done for Micah to make him healthy and whole. Thank you Children's Hospital Boston!

MICAH IS GOING HOME!!!!!!!

WE ARE GOING HOME!!!!!! 3 WEEKS TO THE DAY FROM MICAH'S FIRST HEART SURGERY WE ARE FINALLY GOING HOME!!!!!!!!!!! We are just waiting on some paperwork and the feeding pump and supplies for Micah and then we head to the train to go home. I AM SOOOOOOOOOOOO EXCITED!!!!!!!!!!! WE'LL BE HOME FOR THANKSGIVING!!!!!!!!!!!!!!!!!!!!!

PRAISE THE LORD THAT THEY WILL BE HOME FOR THANKSGIVING!! THANK YOU ALL FOR PRAYING FOR MICAH DURING THIS JOURNEY. I KNOW HIS JOURNEY WITH HIS HEALTH ISN'T OVER YET SO KEEP CHECKING BACK FOR MORE UPDATES. Jason and Susanne are grateful for all your prayers for them and Micah. Thanks to all of you who prayed and left comments for them. Keep praying and sending them notes. They also have finally gotten the rest of their belongings from Germany and they will be moving into a house. Lots to be thankful for this week.

Calm Night

We had another calm and quiet night. Micah did very well this morning and is on his way to x-ray for his usual morning chest scan. He even got a bath this morning (which he NEEDED). He was a little fussy this morning when I first woke up, but we snuggled and he fell right to sleep.

Vocal Cords Look Good

Okay, so the throat doctors did their thing and Micah's vocal cords look fine. What they say is going on is that the signals from Micah's brain aren't reaching his throat in time to block off his wind pipe. That's why he's aspirating his food. This should resolve itself over a few weeks, as Micah gets stronger. He'll have to do another swallow test in a few weeks, but they aren't going to keep Micah here for that.

This was from earlier this afternoon; I just had my pace maker "class" and the throat doctors are here trying to figure out what's going on with Micah's swallow. I'm really hoping it's nothing more than bruised vocal cords and that after a few more weeks he'll be able to eat from a bottle again without any more trouble than he normally has because of his cleft. That would be the best outcome

Smooth Night

Well we had another smooth night. I'm going to be getting a "class" on how to use Micah's NG tube (if they decide to send him home with it) and I'll be getting a "class" on Micah's pace maker. I want my nursing license after Micah's all done in the hospital!!! I may not to shots and IVs (because needles are evil), but I'll probably be doing everything else. I love you Micah!!!!

Swallow Test

Well, the swallow study didn't go so hot. Micah is aspirating his food when he tries the bottle, and that is why he wants nothing to do with it. The doctors are trying to figure out what to do. This may be something to do with the stress to his nerves from all the cardiac procedures, and he'll be able to eat again. But we may go home with the feeding tube and pump. Fun, fun.

Pray That Micah Will Eat

Well the feeding team was in here to watch Micah eat from a bottle, and Micah refused to eat. He was starving, but he did not want to eat from the bottle. They aren't sure why, so they are going to do a swallow study this afternoon. They may send him home with the feeding tube, but they would rather he just eat from the bottle.

Only One Attachment For Micah

Right now the only attachment Micah has is his feeding tube. Everything else is gone!!!!!! Tomorrow they will try to let him feed from a bottle. If he proves he can do that, hopefully they will send us home. We also got a call from our future landlord. WE HAVE A HOUSE TO LIVE IN!!!!!!!!! Life is finally falling into place.

Off Oxygen!

Micah is OFF the oxygen!!!!!!!!!!! He is sound asleep he is breathing GREAT!!!!!!!!! They are going to move his feeding tube in a little while!!!!!!!! His nurse practitioner told me that Micah has to prove he can eat well on his own and he'll be able to go home!!!!!!!!! WE MAY BE HOME FOR THANKSGIVING!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Micah's x-ray looks better today than it did yesterday!!!! The nurse practitioner showed it to me and there is a HUGE difference!!! They are much much clearer and he is even coughing out the junk that is in his lungs. They are going to pull back the NJ tube and make it an NG tube. Then they will start bolus feeds!!!!
A quiet and peaceful night. Micah did awesome and slept until about 5:00am when the nurse started fussing with him. They are weaning off his oxygen and he's still doing great. He's off for an x-ray now and then a day of smiles and cuddles. I love 8 East!!! No sign of going home yet, but there is a light at the end of this tunnel.

Your prayers are working let's pray him home for Thanksgiving!!

Micah Has Moved to 8 East

Micah is in 8 East now!!!!!! He looks great!!!!! He's breathing great!!!!! He's been smiling and talking to me!!!!! And I DON'T have to ask to hold him!!!!!!! We've been cuddling since I got her!!!!!!! He even napped in my arms!!!!!!! They aren't promising me a time to go home, but he is definitely making progress!!!!!

Susanne made it safely back to Boston today. Praise the Lord that he has moved to 8 East. Continue tp pray!!

No Room For Micah

Don't worry this is not you might think it may mean. Here is an awesome update that Susanne got today.

I got a call from one of Micah's doctors today. They gave him and Echo, and he passed it with flying colors!!!!! He is still in the CICU, but only because the main cardiac floor still doesn't have room for him. He's just hanging out and bored out of his mind. I'm heading back to Boston tomorrow. I am SO excite to see Micah again!!!


Thanks again for praying for them. Please continue to pray that he will get even better so he can go home.

Micah Is Moving Out!!!!

I just found out from Micah's nurse that they are taking Micah OUT of the CICU and moving him to the main cardiac floor. (8 East) This is huge!!!! This means he's doing well enough and getting strong enough to be able to take a closer step to coming home!!!! They are still going to watch his breathing, but his doctors are confident enough to let him out of the CICU!!!!!!!!!

Here are some more updates from the last few days. Sorry I didn't get these on right away. I am in NJ with my family and I was in MD yesterday.
Just finishing up some packing and then heading for the train to go home for a little while. Micah is looking great. He slept well last night and is laying in his crib all wrapped up nice and snug and watching PBS. He is such a little couch potato!! But I'm really okay with that right now. His breathing is still awesome and he was able to yell at his doctors without trouble. I called the hospital and everything is going well there. Micah is doing great! He's breathing on his own without pressure support, and they have stopped his pain medications. He's still happy and alert and glued to his cartoons. He got bored yesterday and the nurse called in a volunteer who got to hold him for a few hours. I'm SO jealous!!

Mighty Micah Is Making Improvements!

Micah's right lung is looking better. Hopefully today he'll get off the pressure support for his breathing and get the heart pressure sensor line out. That would be wonderful! Micah is off the pressure support!!!! He's back to breathing on regular oxygen. His lungs are looking a lot better too. I'm still hopeful that this is something Micah can deal with on his own and he won't need another surgery. But we will cross that bridge if it come. Later on today his heart pressure sensor should be coming out. He's making some progress. The heart pressure sensor is out. That leaves just 2 IVs left in him. He's still doing well with his breathing so that's a plus. I got to hold him for a while this afternoon and he was smiling and talking to me too. They are weaning him more and more off his pain medicine and he's doing great. Amazing, with everything he's been through in 2 weeks.

Again thanks for praying for Micah!

A New Development For Micah

If it's not one thing it's something else. Micah's right diaphragm is showing signs of paralysis. The doctors are waiting to see if this is going to be a surgical issue or if Micah will be able to deal with this on his own. No chance of going home soon. Maybe in a couple weeks. Also Micah will be going to the Cath Lab this week or next week to remove some extra blood vessels around his heart that shouldn't be there. They aren't hurting him, but they aren't helping either.

Keep praying for Baby Micah and for strength for Susanne and Jason. I know that she and Jason appreciate all of the prayers on Micah's behalf. Please leave them a comment and let them know you are praying. I know from experience that reading people's comments helps them get through the day.

Here is the address for the hospital if you would like to send them a card or note of encouragement.
Children's Hospital Boston
300 Longwood Avenue,
Boston, MA 02115

A Quiet Night And A Surprise!

Here are the updates from yesterday. If I get anything new I will update it today.


I just had an AWESOME day!!!!! Jason came down to Boston and surprised me with an afternoon out, just the two of us. We haven't been out on our own (without any kids or pregnancies) in forever!!!! It was Wonderful!!! He even brought me flowers!!!! Today was wonderful, thank you Jason!!!!! I love you!!!! (last night at 6:15)


It was another quiet night. Micah is awake and alert and glued to the little t.v. over his bed. The doctors and nurses think he may have some fluid in or around his right lung, so they are monitoring that, but they are NOT planning to re-intubate him. He really looks much happier now than he did 3 or 4 days ago. (yesterday at 11:00 a.m.)

Peaceful Night And No Breathing Tube

Micah is still doing great! I am hoping for another smooth, and peaceful night. Without the breathing tube he's got to do all of his breathing on his own. I'm a little nervous about his lungs having trouble. He has not shown any signs of trouble I'm just a nervous mommy. Please pray for a quiet night with NO surprises.

This was from this afternoon.
The breathing tube is out!! (again) Micah's doing great!! They are giving him a breathing treatment to help his throat feel better. The nurse told me they are going to try to have him feed tomorrow, which I know he'll will appreciate. Also tomorrow they are going to take out the one heart pressure sensor and the IV line that is going into his heart. A few less attachments. He is making awesome progress!!

Micah Had A Great Night

Micah had a great night last night!!! For the first time in a few days, Micah slept peacefully and didn't set off any alarms and nothing bad happened. It was wonderful!!! He is still resting nicely and his color and his breathing are great. Hopefully the breathing tube will come out today.

These were the updates for yesterday after surgery. Sorry these didn't get on here until now. I was gone all day yesterday.

MICAH IS DOING AWESOME! HIS SURGERY WENT GREAT! The pace maker went in well, and he has a little bump under his left rib. The surgeon, Dr. Fynn Thompson, worked really hard to make sure all the wires are in the right places and everything fired off correctly. He also said he saw no damage to his heart from the earlier pace maker failure. He thinks the failure this morning was with the machines and NOT with Micah. He is off the paralytic medicine and is starting to wake up. They still have him on REALLY good pain medicine so he's drowsy and comfortable. They are hoping that tomorrow they will take out the breathing tube. It'll be great to see his little face again. I'm also hoping that after his tube is out I'll be able to hold him for the first time in almost 2 weeks.

Micah Is Out Of Surgery

Micah is out of surgery!!!!!!! The pace maker went in well and Dr. Fynn Thompson will be out in about 30 minutes to talk to me!!!!!!!

Praise the Lord!!!!! Thanks for praying but don't stop.

Micah Is In Surgery

This is what Susanne wrote on her facebook. I was just updated on Micah's progress. They just made the first incision and that means his on his way to having the pace maker put in. He's stable and doing well.

I will post when there is more info.

Pray, Pray

Another horrifying night. While a nurse and a respiratory tech were suctioning his breathing tube, Micah's primary external pace maker failed. Thankfully, the doctors were already prepared for this happening. Micah is now hooked up to a huge pace maker from the '70. It's working well, but Micah has been moved to the first surgical case of the day.

The surgical team is here and they are getting Micah ready to go and trying to figure out how to move him with the huge pace maker he's hooked up to. The surgery will take about 2 1/2 hours but they aren't promising anything time wise.

Let's flood heavens gates right now for Micah and Susanne. Please leave a comment and let them know you are praying.

Upate For This Evening

Micah is doing well. His lung has expanded and he is doing 99% of his breathing. They just got done suctioning out his breathing tube and they think they found what caused his lung collapse. There was something large and gross in his lungs that he was trying to cough out and it finally came out. They are leaving his breathing tube in since he's having surgery again tomorrow.

I don't know when his surgery will be tomorrow. As soon as I find out I will post it here. Praise the Lord they found out what caused his lung to collapse.

Breathing Tube Back In

This is a picture of Micah before surgery. He is so cute!!

Here is the latest update this morning from Susanne;
Well, two steps forward one step back. Micah was sleeping well all night until about 3:30am. And then he started to fuss and really hard to work for air. The nurse was just changing his IV lines and his diaper (normal night time things) and his right lung just collapsed. The nurses, a doctor, and respiratory are all working on him now. I'm just trying to stay out of the way. They have re-intubated Micah. Hopefully his lung will refill and he'll be okay. Micah is intubated and stable. The doctors think that he may have aspirated some formula and that made him struggle to breathe and that's what caused his lung to collapse. They are just going to keep him asleep and comfortable and intubated for today since he is scheduled for surgery tomorrow. **What a fun morning**

I will update if I get something new. Keep praying!!

Here Is The Update For Today

Micah had a rough night and a rough day today. He was just so uncomfortable and miserable that he couldn't sleep. He would start to doze, then something would wake him and he'd start to cry. It was so sad. I haven't been able to hold Micah yet. He has too many attachments and the doctors are worried that if he looses any of them that he'll end up in the O.R. again. I asked this morning and the doctor apologized for having to tell me no. It's okay. I want to hold him when it's safe. I can wait, it's just hard. Micah will probably end up in the O.R. Friday, his heart still isn't beating enough to sustain him. So his surgeon has him scheduled for surgery some time Friday if his heart doesn't pick up by tomorrow night. They will be putting in a permanent pacemaker if his heart doesn't pick up.
Susanne was able to see Jason and the kids today as well as Jason's sister Rachel. They had a great day and were able to go to the aquarium today to. Please continue to pray for Micah's heart to pick up. How awesome would it be if God healed it just in time and they wouldn't have to put the pacemaker in? Let's start praying that way and see how God will work. I know that Jason and Susanne are grateful for all your prayers for Micah. Don't forget to leave them comments and let them know that you are praying for them.

Update

Here is an update on Micah for today. Check back often to see how you can pray for him and his family.

Day six and Micah's pace maker wires are starting to wear out. They are still making his heart beat but they don't know how much longer they will last. His heart hasn't picked up yet. They EP Doctors, Cardiologists, and Surgeons will discuss whether or not he will get a permanent pace maker. If they decided that he needs one he'll go back into surgery. Please pray for the doctors to come to a decision soon.

Please be praying for the doctors today and for Susanne as she is with Micah.