Saturday, July 26, 2008

My Swedish Sister.




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.

Wednesday, July 23, 2008

Tube-puller.



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! :)

Monday, July 21, 2008

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 watching our kids.  For holding babies.  For changing diapers.  For being our friends and for being our brothers and sisters in Christ... we can't thank you enough.  We are truly blessed.  I can't tell you how many times i feel like I can't take another step or do another thing and then someone blesses me.  Someone sends me gorgeous flowers or a fruit and cheese basket or a gift card to Target.  Someone picks up Starbucks and brings it to me.  mmmm... thank you, thank you, thank you.

#3.  Discouraged.  Aaaaaggggghhhhh.  I just keep sinning all the time.  I'm frustrated.  I've been struggling with anger, frustration, confusion, despair, distress, discontentment, over-eating, not eating (just plain turning to food for comfort), comparing, criticizing, and caring about what others think more than God (fear of man).  Yuck.  Was I always this sinful?
          But Stop!  Christ died for me a sinner.  He is changing me.  He is transforming me.  He is making me into something new... something that resembles Him.  I got up and fed a baby without complaining.  I considered my husbands need for rest before my own.  I ate a cup of yogurt instead of a bowl of ice-cream.  I sat down and made a charm bracelet with Libby instead of reading my own book. Is it wrong to be tired or get sleep or eat ice-cream or read a book - NO.  But God is helping me to die to my desires and to love others and care for them in the way He wants.  He is helping me to let go of my expectations which I so tightly cling to.  I wrap my arms around my priorities, demands, and control issues and he gently and lovingly says no and helps me let go.  I am so thankful that He is working in me, a broken, broken vessel.

He is teaching me to hope instead of despair.  To dance and sing instead of scream.  To laugh instead of weep.  And to hold onto Him like I've never held to anything before.

#4.  Sharing my faith.  Recently I have had the opportunity to share my faith.  At the grocery store.  Twice on an ambulance.  And yesterday at the library.  I haven't full out preached the gospel but I have shared what's happening in my life and how God has been faithful and sustaining me.  Yesterday a new pastor spoke at our church... and for the first time in 7 months I heard the full message... which is a miracle... especially in the nursing mother's room.  In his message the pastor was reminding us to not deny Christ but to be His disciple.  After talking it over with Mike I realized that lately I have been sharing with others.  So while at the library getting some books on hold I talked to the librarian.  I told her why I was getting some books on grief, loss, etc.  I explained my sister Libby and nephew Sam's death.  She was stunned.  I talked about how God has been faithful to us in the midst of such hardship and difficulty and pain.  She spoke of her two sisters and how close she is to them.  I was so thankful that God is allowing me to share my testimony and to direct people off of me and to Him.  That is all Him.
   
         BTW- I ordered some really great books I'm looking forward to reading!

Okay, Ian needs to nurse again :)  I better scoot.  Just wanted to give you an update and let you all know, yes, we are still alive!

Wednesday, July 16, 2008

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 too much to put down here.  Just pray for us- that God would give us, the surgeon, the specialists, and others involved wisdom to make the right choice.  It's overwhelming.

Today was a great day by the way.  Alexis came over and helped me with the kids.... and we even took all four of them out!  She stayed in the car with Libby and Samuel and they watched the land before time while I took the twins upstairs to the doctor's.  We also braved Starbucks today.  We were brave.  It was chaos.  Sweet chaos.  Alexis describes it as crazy, fun, and frustrating... that's it in a nut shell :)  Samuel was running EVERYWHERE. Ian was crying (needing to be nursed).  Libby was upset because I took the straw off her drink.  Yeah, I'm crazy.  A friend bought me a notepad that I love: "I'm not suffering from insanity, I'm enjoying every minute of it."  So true.

We picked up dinner at Chick-fil-A... so fun and put the kids down early-ish and then enjoyed paper crafts projects and Princess Diaries.  Thank you Alexis!

Well, to bed.  To bed.  sleep awaits.

Monday, July 14, 2008

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 read a good book (or at least an amusing one, wink).  I knit.  I eat ice-cream.  Someone watches the kids so I can nap.  I take a shower.  I eat a salad.

God's love breaks in.  His grace sustains me in my darkest moments.  His presence calms the whelming flood.

The positives I see right now:

1.)  Michael is home.
2.)  I have the most AMAZING, AWESOME husband in the world!!!!!!
3.)  Isabella is coming over tomorrow to help me with the kids and with the house.  It's always a good day when she's over :)
4.)  I spent most of last week and today with my mom.  She's my best girl friend.
5.)  I got to go to a friend's engagement party last week.
6.) My dearest Swedish "sister" is coming in a couple weeks to stay for a few days!  Sara- I can't wait to see you!
7.)  I'm not going to hell.  Thank you sweet Jesus.
8.) I haven't completely lost my sense of humor :)
9.) God willing, I will get through this and live to laugh at myself and these hard times.
10.)  Mike worked 12 hours today.
11.) Our electric bill is paid.  Our phone bill is paid.  And we don't have to pay hundreds of thousands of dollars for the two wee nuggets.

I'm still exhausted.  I still NEED a good cry.  I still want to give up... but He is carrying me.  My boundaries have truly fallen in pleasant places. (Psalms)  Were it not for this pain, these challenges, hard-times, and suffering would I see the Lord like I do now?  I can't lose sight of Him in the midst of such hardship because He is all I hold to and cling onto.  He has given me good gifts.  We have a dear woman, Annie, who comes over and stays with Michael once or twice a week.  She has been a blessing and helps us get through some long nights.  We are blessed to have home health nurses check on Michael.  Ian is growing strong.

So rejoice, my soul.  Even when tired or frustrated and angry, rejoice.  God is good.  He has not forsaken you.  He has not left you in the midst of this.... He is with you.  He is quick to comfort, slow to anger, and abounding in love.

"Then Sings My soul, my Saviour God to Thee... How Great Thou Art.  How Great Thou Art."

Saturday, July 12, 2008

My little heavy weight :)

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 weeks and not in a minimum of 2 months.  Praise the Lord!

Please continue to pray that he can keep his feeding tube in until then.... that he won't have any more apneas... and that we can fatten him up!  Thanks for your prayers!

BTW- I ate some chocolate today and am feeling much better :)

Thursday, July 10, 2008

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 :)

Wednesday, July 09, 2008

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 some feedback and encouragement from those who are reading my blog.  I don't care if I've known you 10 years or have never met you.  I would love some encouragement.  I am tired and weary and need to be reminded of truth... and we need emotional support!  If you're too embarrassed to post on the blog send me an e-mail or write me a card, okay? :)

3.) Money or Gift Cards- This is the one I am least hesitant to say.  I don't want your money.  The truth is though with Mike staying in the ICU he's not working... not working = no money. Please don't feel pressured to give.  I am not trying to make you feel guilty... this is for the people who have asked me out of desperation, what can they do or how can they help... do you understand.  If God is not speaking to you about this, DO NOT DO IT.... we would much rather have your prayers and words of encouragement.  And thank you for those who have given!  Right now it costs extra with gas to and from the hospital.  Meals at the hospital and such. Etc.  You would be amazed at what a gift card for coffee does for us :)  Again, no pressure.  Again, if you just are like, I've got to do something... give us a couple bucks for coffee or gas for the car.  And I mean it, 2 or 5 dollars. 

4.) Practical helps.  Do you want to wash dishes?  Do you want to mow our lawn?  Do you want to plant my plants that have needed to be planted for two weeks but have yet to be put in the ground because we're too busy at the hospital?  Do you want to help me sort the kids toys and put them in clear storage containers?  Do you want to re-organize my kitchen?  Do laundry?  Wash floors?  Scrub a tub or toilet?  My friend Rebekah J. is heading up help for us.  She is my contact.   I will always need help. This one just stands.  Even after the hospitalization... I love the help.  Come hold a baby.  Come fold some clothes.  Come drink some tea with me and laugh at the whirlwind of activity that surrounds us.  I am so open to whatever help people want to give.  and I am so thankful for people who even want to do it.  And thank you to all those who have helped us.... you know who you are- you've blessed us so much- Thank you! 

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 in the afternoon.  On the drive over he alarmed 7 times.  He was fine in the doctor's office.  His pediatrician and I discussed the surgery as a more probable likelihood.  Well, I went to Target which is less than a mile from the doctor's office to pick up medicine for Michael's reflux.  He alarmed on the way in.  He alarmed at the pharmacy twice in less than 5 minutes.  I walked around and he kept alarming.  At this point I was very concerned.  Every time I would walk to the car he would alarm.  He was having color changes.  He would stop breathing.  His heart rate would drop.  I finally called his pediatrician and told him what was happening.  He told me to call 911.  He said do NOT get in your car!

Once again the Chesapeake Fire Dept. came to my rescue.  They had great response time.  Their ambulance drove me straight to CHKD!  What a blessing.  (Often they would have had to go to Ches. General Hospital and then they would transfer me to CHKD because you're supposed to go to the closest facility... thankfully they just took me straight there and cut out the middle man and saved time!)

The EMT in the ambulance asked me about my life.  She asked me why I  was so calm and at peace.... um, hello?  Is this the perfect opportunity to share about my life and what God has done?!  It was.  I was able to  point her to the One who sustains me!

When I reached the hospital Michael need continuous stimulation and oxygen so that he wouldn't slip back into apneas and bradys.  His color was changing from pink to white to gray to blue/purple lips when not stimulated.  He was transferred to ICU that night and was given oxygen.  They're going to try and put an "In-D" tube in... which bypasses the stomach and goes straight into the duodenum.  This way he won't reflux and his lungs will be clear for surgery.  The surgery is called fundoplication surgery... here is some more info.

During fundoplication surgery, the upper curve of the stomach (the fundus) is wrapped around the esophagus and sewn into place so that the lower portion of the esophagus passes through a small tunnel of stomach muscle.  This surgery strengthens the valve between the esophagus and stomach (lower esophageal sphincter), which stops acid from backing up into the esophagus easily.  This allows the esophagus to heal.
         -This procedure can be done through the abdomen or the chest.  
         -This procedure is often done using a laparoscopic surgical technique.

So anyway, the plan is to get the surgery as soon as the next available slot is open.  They're hoping tomorrow.  We'll see.  Till then Michael is doing well.  He's in "good spirits"... he's on a nasal canula and getting room air but using a half liter to create some stimulation.  Mike has been staying with him during the day and at night.


So besides traumatic ambulance rides, over-exhausted and confused toddlers, being in the ICU at CHKD, having 3 doctors appointments this week, life is pretty much normal.  Thankful for God's sustaining grace.  

 


Tuesday, July 08, 2008

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

Monday, July 07, 2008

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

Thursday, July 03, 2008

More on Michael.


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.


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.




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!

Wednesday, July 02, 2008

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

Tuesday, July 01, 2008

"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