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Showing posts from July, 2008

My Swedish Sister.

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My dearest Swedish sister is here.  Her name is Sara and we met in Australia while working with Youth With A Mission (YWAM) and doing a Discipleship Training School (DTS).  her flight was delayed due to storms on Thursday and she didn't arrive until well after midnight but we have already made the most of our time. On Friday morning we went and had pancakes with the kids and Fafa (my mother-in-law) at IHOP.  She loves American pancakes and we all had a great time.  We drove thru for some Starbucks on the way back home.  My mom came over later in the afternoon to hold down the fort (watch all 4 kids!) and we went out shopping for the day.  It was a success.  New clothes for her daughter Thea and her new baby (due in November) and some fun items for her and her family.   It has been such a blessing to have my friend here.  A comfort and joy.

Tube-puller.

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He pulled out what?  His tube.  All the way out.  Completely.  There he was sitting proud as pie about his accomplishment.  What does this mean you might ask... a chance for some photo booth pics on the computer and a trip for Mike back to CHKD... hopefully it won't take 12 hours this time.  Here's hoping.  Thank you Mike for being such a great papa!  You're the man.  And Michael... let's try and keep it in this time... at least for longer than a week! :)

Random Ramblings with an update :)

How can so many emotions exist at one time in one person?  So much is going on and I have a hundred new things I want to blog about...and I don't because there's no time or I'm too tired.  So let me update you in my random sort of way.  Kind of like the way I speak at times.  Things pop into my head and I just speak them.  So, here goes...
#1  Mike had to take Michael into the ER at King's Daughter's (CHKD) on Friday.  His in-d tube was clogged.  We were afraid it was kinked inside but it wasn't.  It still had to be replaced and it still took over 10 hours.  Did I mention it was midnight when he took him in?  Yes, people, he is a saint.
#2.  So grateful.  For all of you who have been blessing us in amazing ways, are are reading this blog- thank you! We've been so touched by all the gift cards for gas and diapers and food.  For all the supportive and encouraging cards, letters, and scripture verse reminders, for the meals, for the calls, for the e-mails.  For …

A tough decision.

So we're in the process of making a big decision.  Should Michael get this surgery done (the Nissan Fundus-plication surgery) or should we get a "g-j tube" put in.  A g-j tube is a gastric-jujunum (sp) tube.  It's like the g-tube except it feeds into the intestines... like his in-d tube but without having to go down his nose and throat... it would enter through the g-tube.  Make sense?
There is a lot to be considered.  The Nissan (prouncounced "ness-en") is a MAJOR surgery which could have some very serious side-effects and problems.  I won't list them all because it's near midnight and I need sleep.  If it works correctly it would stop the reflux which would in turn stop the apneas.  But if it goes wrong there's a lot of problems it could cause.  The g-j tube is NOT a permanent solution... it's temporary.  Now, he might outgrow the reflux a little... or at least enough that he wouldn't need the surgery or he might not.
Anyway, there's…

When All Feels Lost.

I've yelled today out of impatience.  I've had to stimulate Michael to keep him breathing.  I've been spit up all over.  I've heard someone crying for over 90% of the day.  I overate in the effort to "eat something".  I haven't exercised and I'm still in my jammies.  I'm too tired to even cry.  Michael is trying to rip off the tape that's holding his in-d tube... and he's in so much pain.  I hate seeing him in pain.
I dispense medicine all day.  I change diapers.  i nurse.  I make formula.  I freeze breast milk.  I prepare meals.  I set up doctor's appointments.  I bathe children: toddlers and infants.  I clean away the infected areas.  I visit Target Pharmacy A LOT. 
I feel over my life at times.  I mean, way over it.  And then something happens.  Something happens that sustains me through the next moment.  An encouraging word.  A sweet song.  A coo.  A smile. A kiss. An "I love you."  A sleeping babe.  An unexpected check. I …

My little heavy weight :)

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Ian and I have been hanging out a lot lately.  He gets cuter and chunkier by the minute.  He only pauses to take a breath and then resumes eating.  He eats and eats and eats.  Well, i got my prayers answered... I have a good nursing baby.  He's missing Michael though and wondering, "Where's my baby brother?"  
Ian is 12 lbs already!  Where does the time go?

Answered Prayer.

I'm sitting on my bed with my almost finished knitting project on my lap.  Ian just finished eating and is peacefully sleeping (definition of a miracle).  Mike's at the hospital with Michael.
Here's the news:  Michael is supposed to be coming home tomorrow.  He will still have a In-D tube.  This runs through his nose, back of the throat, past the stomach and into the duodenum... henceforth the "D".  This is a wee bit nervewracking because if it messes up or gets pulled out we have to go to the hospital to have it put back in.  Our home health team is working on making sure we have nurses to help us out and keep checking on us.
In two weeks Michael will have the surgery to correct the reflux.  The condition is he must weigh 4 kilos (about 8lbs. 12 or so oz.).  So we must fatten this little one up :)  We're happy though because we will have the surgeon who can do it laproscopically instead of opening up his chest.  I feel glad that he will have the surgery in two…

update

I'm fighting being FURIOUS!!!!!!  They can't get Michael on the schedule.  The surgeon he needs is booked until September.  We're trying to see if we can use another surgeon and there's only one she thinks is capable of doing this kind of surgery.  They might even send him home until he can get the surgery.  Stress is not even the beginning of this.  So thank you for your prayers. We are still waiting.  If something opens up on the schedule he will be put in.  I'm about to go and call the patient advocate... and try not to swear :)

At the risk of being Honest...

Okay, I've had several e-mails, calls, and spoken conversations of people who say, how can I help?  Let me tell you.  I'll be honest.  This isn't to stress anyone, this isn't to beg or guilt trip... this is just some honest to goodness ways you can help right now, if you're one of those people who is thinking or saying HOW CAN I HELP?
1.) Prayer - this is the most important thing and what we ask from all of you.  To pray for Michael.  To pray that God would sustain Mike and I.  To pray that He would be with Libby, Samuel, and Ian who aren't exactly sure what's going on.  To pray for healing.  To pray for a safe surgery and recovery.  Etc.
2.) ENCOURAGEMENT - PLEASE post on my blog some encouragement.  It could be a scripture.  It could just be a personal thought.  It could be as short as a fragments sentence or as long as a paragraph.  I know you all don't want to put your name out there... so leave an anonymous response if you want... I would just love s…

Running to Jesus.

For those of you who don't know me... I love to write.  here are some titles for my books I've been coming up with lately:
Ambulance Chaser: My life inside ambulances
The First 5 Years: How One Woman Survived Chaos,Trauma, Grief, and Gave Birth to 4 children
 "No, I'm NOT a chronic liar, this really is MY LIFE."
Okay, I'm playing around, but not really.  This has been crazy and when I talk to people, people don't know what to say to me.  That's okay.  I don't know what to say either... because my life seems just a bit unbelievable.  
Okay, whose wondering what happened on Monday... raise your hand.  This is what happened.  Sunday night Michael was alarming but didn't require tons of stimulation... he was able to take a breath or bring up his heart rate on his own.  Monday morning though the activity on the monitor increased and he needed a bit of stimulation.  The nurse came over on Monday morning and assessed him.  He had a doctor's appt. at 3…

to ICU to Surgery

Michael made the trip from the emergency room to intensive care where he is right now. The hope is that he will be able to have surgery tomorrow morning.

The doctors will take the top part of Michael's stomach and wrap it around his esophagus, causing a sphincter effect. The upside of the surgery is that Michael would have an easier time keeping food down and a more difficult time bringing it back up. The downside is that there tend to be complications with choking, gagging, and vomiting.

The surgery was brought up & decided against last week. This week however, Michael's doctors, home care nurse, and mom all feel that it's a good idea.

The ICU at CHKD is pretty busy right now. Jennifer specifically asked for pray that Michael can get into the operating room tomorrow... that this doesn't get delayed.

I know you're all praying for Michael and the family. Thank you.

~Michelle

In the ER

Jennifer called with the following news:

Michael came home Friday night & was doing alright through Saturday. Sunday, however, he started having bradies and apnias (low oxygen levels and low heart rates).

He had 5-6 episodes on the way to the Dr's. Then at Target, while picking up his meds, he had another 8 episodes. Jennifer called the Dr, who told her to call an ambulance. So Jennifer and Michael made the trip to CHKD from Target where they are currently sitting in the ER.

~Michelle

More on Michael.

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This is the day Michael had to go to the hospital.  He's looking pale here but he was being so sweet in spite of all the craziness that was happening.  He kept refluxing and vomit was coming out of his little nose and mouth.  Poor baby.  They think he absorbed some of the throw-up in his lungs which kept causing him to stop breathing.  We are discussing a potential surgery.  We'll know within the week if he needs it or not.  Will keep you posted.
Mike's staying the night with him again.  He's been a trooper staying every night with Michael. I've been staying home with Ian.  Michael is on room air (no oxygen) and has resumed feeds through his feeding tube.

sweet moment.

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Papa's arms are a safe place to be.  You can see how quickly they fell asleep when Mike was rocking them.  Isn't it precious?

Happier Drama.

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Let's take a break from all of the intensity and turn back to a little bit of a pleasanter time... shall we?  This is my little drama mama, Libby.  She has quite the flair, doesn't she?  She came down with her glasses upside down, her coat and scarf on, ladybug hat, skirt, flip-flops and she built a tower.  I love my girl!

A turn for the better

Spoke with Jennifer again today. Just for a minute but she told me that Michael is out of ICU. Yay! They're still running tests on him but he's on room air (no oxygen) and taking feedings. :-)

~Michelle

"Dude, You Have Serious Thrill Issues."

My dear father-in-law reminded me of this quote from Finding Nemo.  Yes people, we do have serious thrill issues.  I think we won't know what to do if our lives ever settles down and we don't have adrenaline coursing through our veins every couple of weeks.
yesterday was intense.  Probably as intense as the day Samuel "tried to die" when he was 7 months old but this time it's with our 10 week old Michael.  Things are stable though now.  His white cell count looks good; he doesn't have the flu or RSV.  He's getting an MRI today and he had an EEG today (his brain looks good!).  He just keeps on having apnic episodes so they put him on caffeine to try to keep him stimulated.  His oxygen saturation seems to be stable.  Yesterday it would drop to as low as 50%... not good.
Anyway, we'll try to keep you update.  And we don't want any more "thrills" so to speak right now.  Very glad Michael is alive.  
-Jennifer

Intensive Care Unit

Michael was transferred to ICU last night. That's all the news I have right now, sorry.

~Michelle