FOOOOOOOOOD!!!!!!!

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!!!!!!!!!!!

HURRAY!!!!!!!!!!!!

I'VE GOT GOOD NEWS!!!!!! I'VE GOT GOOD NEWS!!!!!!!!!! I'VE GOT GOOD NEWS!!!!!!!!!!!!! MICAH PASSED HIS SWALLOW STUDY ON NECTAR THICK LIQUIDS!!!!!!!!!!!! HE PASSED, HE PASSED, HE PASSED, HE PASSED, HE PASSED, HE PASSED!!!!!!!!!!!! MICAH PASSED HIS SWALLOW STUDY!!!!!!!!!!!!!!!!!!!!!!!

A wonderful visit and a nice move...

Micah is doing well today. Jason and his mom came down for a visit!!! It is SO great having them here. They are holding him and talking to him and getting a few smiles too. We are also moving back to the floor this afternoon. They still haven't fed him but he's not as hungry since they are giving him more IV calories. He is a much happier baby now. He and Jason even took a nap together. Just a really good day. The plan is to SLOWLY start his feeds tomorrow. They are going to do a swallow study tomorrow or Thursday to see how his throat is healing. Then they are going to slowly feed him to see how his stomach and intestines do with digestion. As long as all goes well, he'll get back up to his normal feedings and start putting in some real weight. FINGERS CROSSED!!!!!!

We are back on the main floor!!!! We are on 8 East again. And, believe it or not, we are back in the same room we were in in August!!!! So, since we've come full circle, so to speak, does this mean we can go home soon?

Time For A Central Line...still no food

Micah's nurse just came in and told me that they are taking Micah back to 8 South (CICU), but not to stay. They are going to place a central line in his neck. This is a larger IV and less likely to blow and have to come out, like the little ones he goes though to quickly. With the larger IV they will be able to give him more IV fats and calories, and hopefully, this will make him feel a little more satisfied. The plan is still to start feeds on Tuesday, and I'm just counting the seconds until that happens. (172800 seconds until Tuesday) Micah has very little energy today and the cardiology team has noticed his lack of energy too. They are making sure he stays comfortable, and going to put in the central line, but their hearts are breaking too. I really hope the next two days fly by.

Please Pray They Will Feed Micah Soon!!!

No sign of feeding Micah today. The surgeons have said no, again, and they aren't planning on feeding him for a FEW MORE DAYS. The cardiologists aren't happy about it, so they are making sure Micah stays comfortable with some Addavan. They are talking about placing a larger IV line to increase the IV calories that he is getting. He is barely 8lbs 8oz, so they want to increase his calories.

Micah Is Hungry!

WILL SOMEONE FEED MY BABY!!!!!!!!!! LISTENING TO HIM CRY IS TORTURE!!!!!!! I talked to the doctor a little while ago and she is just as unhappy as I am, but the surgeons are the ones deciding this...but of course they aren't the ones here listening to Micah cry...The doctor tonight said she is going to insist they feed him tomorrow....he is just so miserable tonight...and I can't do anything to help...I wish I could nurse him right now...I really do.

Merry Christmas

MERRY CHRISTMAS TO YOU ALL! Micah is doing well this morning and saw Santa! He is incredibly hungry and hopefully tomorrow they'll feed him. He is OUT of the CICU and back on 8 East! A great Christmas present. He moved yesterday afternoon and has been a VERY popular boy ever since. He and his room mate have been having screaming contests, and I think she is winning. Micah just doesn't get as loud as she does.

Micah Is Doing Great!

Micah is doing great!!! He's hanging out with one of our favorite nurses, Julisa. They are giving his tummy a few more days to rest and recover, but they are giving him IV calories and fats. They'll fatten him up somehow. We just opened presents and they kids are enthralled right now. I'm heading back to Boston tonight, spending Christmas with Micah!!!!

The love of family and friends, a renewal of faith and hope, happiness that lasts throughout the year, may these be your gifts at Christmas. I wish you all a very Merry Christmas, and the hope that you can spend it with the ones you love.

Susanne Heading Home!!

I'm heading home on the bus tonight, to do Chhristmas tomorrow with Jason and the 3 big kids. Then back to Boston tomorrow night to spend Micah's1st Christmas with him. He's moving to the floor tomorrow!!!

No more breathing tube!!!!!! (again)

They pulled Micah's breathing tube and he is SO much happier!!!!!! They are now waiting for the swelling in his throat to go down, and then we MAY be moved back out to the floor. He is doing great!!! His white cell count is WAY down; yesterday it was 20, this morning it is 9!!!!! They are pumping him full of antibiotics and they are working!!!! He'll probably be on those for a week and a half to two weeks. He has a surgical tube in his stomach now, and that will stay until he is able to feed without risk of aspiration. Unfortunately it is looking like it will probably be at least six month before that happens. But as long as he is able to feed and put on weight, he should be able to go home. Dr. Brown is hoping that by the time he gets back from Montreal, in about a week, Micah will be ready to go home.

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

There was NO perforated bowel!!!!!!! The surgeon came to talk to me and told me that the tube they put in had slipped out of Micah's stomach and was feeding his abdomen. And of course with nothing plugging the hole in his stomach all of those contents spilled into his abdomen. They cleaned everything out and removed the old tube. There is a tube STITCHED into his stomach now, but that is just for draining. Now he just has to fight off the infection he has and start putting some weight on. I will be asking for the tube in his stomach to be removed after it is safe to do so. NO MORE BELLY TUBES!!!!!!! They cause more harm than good. They are also hoping that the anesthesia wears off soon so they can extubate him. I know he'll appreciate that!!! Thanks to Laura and Jon for bringing me to Boston and sitting with me (and keeping me calm) while Micah was in surgery. I love you guys!!!!

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

Micah went into surgery at 4:58pm. They are still attaching lines and prepping his pace maker. The surgeon, Dr. Fishman, came to explain what is going on. There is a hole in Micah's bowel, but they don't know where. This is going to be an exploratory surgery until they find the hole. Then they will remove the section that has the hole and reattach the two ends. The doctors think the hole may be closer to his stomach so the surgeon said they may have to close off that part of his stomach and reattach the intestine elsewhere in his stomach. The surgeon said that he will do everything possible to fix this safely and with NO ADDITIONAL strain on his heart. Because of the infection, the is a lot of pressure in the right side of his heart and this makes this operation VERY HIGH risk. Whatever happens with the repair they are going to clean out all of the bile and other secretions that have spilled into his abdomen. The surgery will probably take more than 2 hours.

Infection!! Prayers Are Needed

I just spoke to Micah's nurse. He does have an infection. His white count is 20. They don't know where it is yet. They are running tests to find it, and Micah's is getting his tube study now. As soon as they get the results of that his nurse is going to call me. Dr. Brown has been in to see Micah and he is in contact with all the docs who are trying to treat him. Micah is sleeping now, because he is exhausted.

No Bronch Scope Today ~ Please Pray

No good news this morning. Micah had a bad night last night. He spiked a fever of 102.4 and his belly is starting to look distended. The GI docs looked at his tube site this morning and they are wondering if it is leaking. They are running some of tests to see if he has an infection or bacteria in his blood. They are not doing the Bronch scope today, but they are going to do another tube study later on today. His nurse told me to call back later on this afternoon to find out what the test results are. His fever did come down after they gave him some Tylenol, but his abdomen still hurts when they touch him. Please pray that they find whatever is wrong and that they are able to catch it early. The last thing he needs is an infection.

Doing Well

I just talked to Micah's nurse, he's doing well. His tummy is still really quiet, so he's just on IV fluids and Pedialyte. They don't want to start the formula until they have good sounds. Tomorrow he will be getting his Bronch scope. Hopefully we'll get some straight answers on what's going on inside of little Micah.

Answered Prayers

Here is some awesome news for everyone!!!

I just called the hospital, and Micah's nurse heard bowel sounds at about 6pm. This is awesome news. They think his bowels "fell asleep" and they are giving them a couple more hours to "wake up". At about 10pm they will start feeding him again. Right now he is in a stroller at the nurses station flirting with everyone who looks at him. The nurses LOVE it!!!

Urgent Prayers Needed

For those who don't know, I got a call from Micah's nurse this morning and they again had to stop his feeds because he had no bowel sounds and they were worried about an obstruction. They did some tests and an x-ray. His nurse just called to tell me they see no obstructions, but Micah still has no bowel sounds and is still in pain. They are going to take him for more tests later today.

Lots Of Prayers Needed For Jason and Susanne

On the train, heading home for the weekend. I'm hoping to sort out the insanity which has become my life. Micah is resting now. He got a new J tube this morning and they will start his feeds again around midnight. He is not happy about it either. They had to give him a tiny bit of medication just to calm him down. I'll be coming back to Boston either tomorrow or Monday.

Jason and Susanne just learned that the house they are renting (they just moved in last week!) is being sold. They will need to find a new place to live by February. Please be in prayer for them to find a new house. They are looking for a 3+ bedroom.

Please especially pray for the children. This year for them has been so filled with an incredible amount of changes and it seems that as soon as they get settled somewhere, they have to pick up and move yet again.

(For those that don't know, they moved to Germany in June, spent 1 month staying with people until their housing was ready. They moved in, 2 wks later their belongings arrive from the US, and then Micah was born prompting their trip back to the states, their 4 mo stay with us, then they finally find a home only to have to move again.)

This housing situation, and all that they are dealing with, with Micah, has been a very diffcult road for them.

Thank you so very much for praying! We know that the Lord has a purpose in all of this and we just pray for His guidance and direction for them, as well as His peace and strength! Thank you!!!

Happy 7th Anniversary Jason and Susanne!!!!

Seven years ago today I married the man of my dreams!!!! I love Jason more now than I did the day we got married. Wow, 7 years, 2 deployments, 4 kids. It's amazing what you can squeeze into a short time. Best thing, even if we aren't together, we are at least in the same hemisphere!!!! Jason, I am so honored you married me. Thank you for wanting to grow old with me. I LOVE YOU JASON!!!!!


Here is a Micah update for today; Micah just got a new IV, and a new dressing on his J tube. I tried to help, but I got a little light headed. Maybe tomorrow it won't be so bad. Now Micah is resting from all the pokes and prods. Such fun!

Negative Tube Study!!

Micah's nurse took him back to Interventional Radiology a little bit ago. They are going to do the tube study to see if something is going wrong with the tube or Micah's tummy. Dr. Brown thinks that the tube may be blocking the exit of Micah's stomach, so instead of his normal tummy secretions moving down through his digestive tract, he threw them up instead. Hopefully, we'll know soon. Waiting, waiting, waiting. Micah is back!!! They did the tube study and it came back negative. There is no blockage, not issues with the tube, which is awesome!!!! Now we wait until Tuesday for the Bronch scope. Although, Dr. Brown is trying to figure out if it can be done sooner. Fingers crossed!!!!!

Not A Good Night! Prayers Needed Today

So much for going home this weekend. Micah had another miserable night. The site of his new tube started bleeding; not a lot, but enough to concern his nurse and the doctor who was on last night. Then he threw up, but thankfully didn't aspirate. Then while he was good and mad about that, his strider came back so he needed another Nebulizer treatment. NOW the ENT docs want to do the Bronch scope. Unfortunately, there won't be a bed available in the ICU (where Micah will have to recover from the scope) until next Tuesday. So they won't do anything until then. But they have stopped Micah's feeds for now so that they can figure out what's going on with his stomach. There is no food or meds going into his stomach, so they don't know why he threw up. Looks like another LONG day of waiting.

Formula Again

Micah is on formula again!!! He tolerated the pedialyte feed well so now he's on 1/2 pedialyte and 1/2 formula. He's doing well with it. His throat is bothering him, so they sent him to x-ray to see if it is just swelling and I'm just waiting to find out the results of that. He's sleepy, but he's getting sore and he has to wait another 1/2 hour until he can get more meds. Poor Baby!!! Micah is sleeping comfortably now. His nurse is keeping up with his Tylenol so he hasn't been as miserable as he was last night. It's nice seeing him sleeping peacefully. Poor Micah was in so much pain last night he couldn't sleep. Just before midnight I got his nurse and she tried to keep him calm until so she could give him more med. The docs only gave him 1/2 a dose every 4 hours. NOT ENOUGH! So she and another nurse tracked down a doc and made him increase the dose and frequency. You could see and feel the change in him once he was given his meds. He just sagged in relief.

Micah Is Back!!

Micah is BACK!!!!!!!! He has his new feeding tube and he is doing great. Everything went well in the OR and now he is completely zonked out. Now they will SLOWLY begin to feed him again to see how he tolerates it. Hopefully by the end of the week he'll be discharged. Fingers crossed!!!!!

Micah Is In Surgery

They just took Micah back into the procedure room. Only 2 and a half hours after he was supposed to be there. The nurses and the anesthesia docs just fell in love with Micah and they said they'd care for him as if he were their own. (comforting) Now I wait for a couple of hours for Micah to come out of surgery. Does anyone else hear a ticking clock?

Still Waiting!!

STILL waiting for Micah to go into surgery. There are two other kids in the OR right now so we are waiting. They said one should be done within the hour so hopefully some time soon this will be over. Micah is getting more and more upset because he is so hungry. He sleeps for maybe a few minutes then he's awake and crying. I feel so bad.

Hungry Micah

They stopped Micah's feeds at Midnight so now he's starving and is a REALLY bad mood!!!! He has been up every hour since about 2AM and screaming!!!!! They have been giving him clear liquids so he doesn't get dehydrated, but that doesn't seem to matter, and those stop in about an hour. This is going to be a LOOOOOOOOOOOOONG day. They aren't going to feed him again until tomorrow. Poor baby!!!!!

Surgery At Noon Today!!

Micah is scheduled for surgery today at about noon. They placed his IV and he was a real trooper about it. He cried, of course, but not for long and now he is out again. After getting his evening meds and about an hour and a half of cuddling in my arms he fell asleep. Now he is all bundled up nice and snug and dreaming away. I'm anxious about tomorrow, but I know Micah is a fighter.

Please be praying for the surgery today. For the doctors and nurses who will be with Micah as they care for Micah. For peace for Susanne as she waits for him. And of course Jason as he is back at home caring for the kids. Keep the comments coming.

Feeding Tube Class And Surgery Tomorrow

Micah is snoozing right now, but he was up earlier this morning. He was fussing and I got up and re-bundled him. When he saw that I was there he just lit up with this huge heart melting smile. It was incredible. He's such a little sweetie. I just got my class on how to take care of Micah's new feeding tube and how it will be placed. I got a little queasy with some of the pictures and the info, but I think I can do this. I just need to get used to it. I just want to make sure that I can care for Micah the right way. The less time we spend in the hospital the better. He goes into the OR tomorrow to have the tube placed. Please pray!!!! I just signed the consent for Micah's anesthesia for tomorrow. Why is it that whenever I sign these consent papers I feel like I'm signing his life away?

Please pray for the surgery tomorrow. When I know a time I will let you know.

Here Is The Update For Today

These were from yesterday. Susanne was home for the weekend to see the boys in there Christmas production at school. Sorry these are a day or so late. I was away for the weekend.


I'm on the train heading back to Boston!! Spent the last couple of days moving into our new house and unpacking. Last night was our first night there and it went well, the kids slept great!! But now I need to go back to my baby!! The hospital called yesterday and again today wondering if I was coming back (DUH). Apparently Micah has been fussing A LOT since I've been gone. Don't worry Micah, mommy's coming!! I just got into the hospital, and Micah is snoozing away. The train ride was fine, and yes mom I did take a cab to the hospital. :-) Micah's nurse told me that Micah will have his surgery to place his feeding tube on Tuesday. Tomorrow I will be getting a class on how to use the new tube and how to care for it. Should be lots of fun. Hopefully we'll be going home at the end of the week. (fingers crossed!!)

Special Visit For Micah

Micah just met his first famous person!! Wally from the Red Sox and the Red Sox head coach just stopped by to say "Hi" and even took a picture with Micah!! When Micah caught sight of Wally he just stared at him like "You are the biggest stuffed animal I've ever seen!!" It was really cute!! I didn't know that the official hospital of the Red Sox was Children's Hospital Boston. It was really sweet of them to stop by.

NO PNEUMONIA!!!!!!!!

Dr. Brown was just in and he says he is going to start getting on people to get Micah's new feeding tube placed (it's a minor surgery) and he is going to make sure that the ENT docs do the Bronch scope at the same time. This feeding tube is the only thing keeping Micah here. Micah has recovered awesomely from the aspiration that put him here. NO PNEUMONIA!!!!! He's a tough little guy!!!!!!

Weight Loss

I was wrong about my previous post about Micah's weight. That was his weight last Wednesday (the day Micah came back to the hospital). I just found out from Micah's nurse that he has actually lost weight. He is now 9lbs 2 oz. They are increasing the amount of food he is getting and tomorrow they are increasing the calories. They want him to gain back the weight he's lost and maybe put even more on. Please Pray!!!!!

Slept Well

Micah slept well last night. The last half of the day, he was pretty miserable. His throat was really bothering him, to the point that he couldn't sleep. After several doses of Tylenol, he was finally able to fall asleep. This morning he is a very happy baby! Lots of smiles and talking. We even cuddled for most of the morning. It's been awesome.

Off Oxygen!!!

Micah is off oxygen!!!! He is making good progress, and the gastroenterology docs came to see him this afternoon. They have two ideas for what to do with him. Both are surgical, but one is a little less involved than the other. They will talk to Micah's cardiology team and see what they suggest. Then hopefully tomorrow the ENT docs will come and they can get an idea of when they want to do the Bronch scope.

Another Good Night

Micah had a good night again. It's the little things that make me happy. :-) We are chilling out for now. The doctors are doing their rounds right now, so hopefully we will have a plan for the day. Micah is in a good mood today, which is nice. He is demanding a lot of attention, "somebody pay attention to me!!!" He is just too cute!!! :-D

Lots Of News Tonight!!!

What a night!!!! First we are moving to the main cardiac floor because a sick baby is coming in and they want Micah's room...then we aren't....then we are....then we aren't....I didn't go to sleep until almost 3 am....but of course I have to wake up and get out of Micah's room when they come to do him daily x-ray (AT 5 AM!!!!!) I'm exhausted!!!!! Micah is doing good today. His throat is still bothering him a lot, but his nurse his helping to keep him comfortable. He is 10lbs 5oz now. They are feeding him through an NJ tube and bypassing his stomach all together until they know what caused this last incident. Jason came down today and we hung out with Micah in his new room. THAT'S RIGHT! MICAH IS OUT OF THE CICU!!! MICAH MOVED OUT OF THE CICU THIS MORNING!!!! We moved a little while after Jason got here and it was great! The doctor today took a look at Micah and said he is good to go home by his standards, but he knows that the ENT docs and the Feeding team needs to see him first. So he's trying to arrange for Micah to be seen by them tomorrow so Micah can get whatever help he needs and go home.
Pray that he will get things done sooner so he can go home. Mighty Micah is on his way!!! Praise the Lord.

Hungry Micah

Micah is about to get his first meal in almost 3 days!!!!! He is such a hungry baby, but they needed to wait until he's safe to feed again. He's been chewing on his binky so much though, that if he had teeth I think he'd eat it. He got a bath and had an IV removed today too, so now he smells really good. That made him SO happy!!!!! There is a CHANCE that Micah and I will be moved to the main cardiac floor tomorrow. It all depends on how well he tolerates his feeds tonight, but he is definitely making progress. His lungs are clearer and his breathing is better.

Sore Throat For Micah

Micah had a good night. His throat was really bothering him though, so they gave him a TINY dose of meds to make him more comfortable and he settled right down. His resting nicely now, watching cartoons. In a little while he'll get a bath and get all the glue and other grossness off of him. He'll be a much happier baby after that. His lungs look clear, and his breathing is a lot better. Some time next week the ENT docs will be taking a better look at his throat. They think he may have a cleft in his throat somewhere. If he does they may close that and at the same time close his palate too. That's just moving up a surgery date. I'm hoping whatever it is it can be fixed and we can move on from this.

Micah's Breathing Tube Is Out

Micah was just extubated!!!! He's really mad and telling us all about it, but he doesn't have the tube anymore. I think he's also happy not to have his hands tied down. He's still swaddled nice and snug, but he's not tied down anymore. He's got A LOT of fight in him!!!!

Plan For Today

Okay, so here's what's going on so far. Micah is still intubated, but they are hoping to take the tube out later on today. They are giving him medicine to help his throat and to keep him calm. (he thrashes every time someone touches him) He is not going to get the throat scope today. The ENT docs say his throat is too swollen. They plan on doing that next week. So we will be in the hospital for at least a week. If Micah does well breathing off the ventilator we MIGHT be moved to the main cardiac floor. He is showing no signs of pneumonia. (HURRAY!!!!!!!!!) He is still fighting against his tube so I know he'll be happy to have that out, even if his throat is going to hurt a lot. They are still keeping a close eye on his lung, just to be on the safe side. Now we wait and he recovers. Time for cartoons!!!

So Far So Good!!

So far so good! Micah has done well today. He is still fighting against the tube, but they have to bundle him pretty tightly so he doesn't yank the tube again. They have weened him down on the ventilator, but they are keeping him intubated for now. His doctors want him to go to the OR tomorrow for a more advanced throat study to see if there is something wrong there. But it's not set in stone yet.

Keep praying for Micah. And PLEASE leave them some comments to encourage them.

Fighting Hard

Last night was quiet. They have Micah well medicated, but he is still fighting hard! He is one tough baby! He starts shaking his head every time someone talks to him or touches him. He is really irritated by the breathing tube. He IS doing ALL of his breathing on his own, which is a good sign. The doctors are still having him pumped full of antibiotics, just to be on the safe side. .

Watching Him Close

They are watching for signs of aspiration pneumonia. If he gets it, it will show in about 24-36 hours. He's already on antibiotics, though. They want to stay ahead of anything he could get, but for now we are playing the waiting game. Some of his old nurses are here and they gave tonights nurse his ENTIRE history. They are all VERY surprised and a little sad he's back. But they are hard at work to get him better.

We are here in Boston! Micah had an uneventful trip (Thank God). He did give the doctors and nurses here a fight though. They thought they had him all sedated and were doing an Echo on him when he woke up "with a vengeance" and PULLED HIS BREATHING TUBE OUT!! They re-intubated him and they are watching him closely.

Air-Evaced To Boston Please Pray!!!

For the few people who don't know, Micah was Air-Evaced to Boston Children's Hospital tonight. I am on the rain now heading down to be with him. During his noon time feed, Micah threw up and aspirated. He began having to work VERY hard to breath and I immediately took him to the ER. The doctors and nurses worked very hard to get him stabilized, but they knew they had to send him back. Please Pray!!!!!

Please Pray

Micah has to go back to Boston. He had some troubles today and they are sending him back. Please pray for Susanne as she heads back on the train and Micah will go in the ambulance. When I get more news I will update again.

God is in control of Baby Micah. Thanks for praying!!

Micah Is Doing Well At Home

Micah is home and doing well. Susanne and Jason are in the process of moving into a house. They are very excited and the kids are loving all the room.
Please be praying for his breathing. He seems to be struggling at times. Also pray for his strider which is still really bad. For those of you that don't know what strider is, it's the irritated throat and heavy breathing from being intubated and extubated. Thanks for all your prayers for them. They greatly appreciate them all. Please continue to check back here often to see how Micah is doing. Pray that he has a good check up tomorrow with the cardiologist.