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Showing posts from June, 2008

... "He's going through a lot"

Is what Mike said when I answered the phone. They are running urine tests, blood tests, a possible spinal tap....

~Michelle

Baby Michael

I got a call today from Jennifer... She and Michael took an ambulance ride to CHKD earlier this morning. His oxygen rates and heart rates were low. He's OK, but they are keeping him overnight for observation. Please pray for the family. We'll keep you updated.

~Michelle

twins.

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Being Home.

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It's been so wonderful to have Michael home.  It's been stressful and crazy and full of the monitor sounding as he attempts to stop breathing or have a very low heart rate but I love that he's here and not in the hospital.  We're starting to get into the swing of things.  We finally figured out the feeding tube pump and know more of what we're doing.  We have had the two older kids away at grandparents and friends' homes but I haven't experienced the having all four without Mike and no help aspect yet.  I'm a little terrified of the prospect but I know over time it will become more and more familiar.
haven't completely lost my marbles yet :)
Michael is definitely more comfortable at home.  He's now 7 lbs. 7 oz.  I'm hoping he'll go to the doctor's tomorrow or Tuesday at the latest.  Look forward to giving a good report.
In the pics, Michael is on the left and Ian is on the right.

All in a Day... I mean hour's work.

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Don't let their innocent faces fool you... Samuel "The Perfect Storm Augustine"
Libby Anne "Hurricane" Hope

Failure.

Sometimes I just feel like a big fat failure.  I want to give up, throw in the towel, and yell "I'm done," at the top of my lungs.  Actually I usually just want to swear... a lot.  Today was a bit intense.  I had to suction out Michael about four times today.  He really has issues of reflux.  The throw-up gets lodged and then he chokes... which leads to him holding his breath or being unable to breathe.  
I'm exhausted.  I'm sitting on the bed and writing to just get out all the emotions of the day.  I've been at the hospital since 9:30 this morning and didn't leave till 10:15 PM.  We had CPR this morning which was a great review.  I just hate the fact that it feels VERY necessary.
It's so hard being a mom.  It's hard to know who to care for in what order.  I know I just need to take it one day, one hour, one minute at a time.... but that's easier said than done.  I feel overwhelmed just trying to deal with minor stuff like who's going watch…

Update.

Today was a little nutty.  Just ask my mommy's helper, Alexis, if you need proof.  She looked at me at one point today and said, "Jennifer, you will NOT be bored!"  I think that's the truest thing I heard today :)
The home health people came by 3 times today.  The first time to drop off the pump equipment. The second time to drop off the apnea monitor.  The third time to give us the suction machine.  A bit wild.  I feel like I got a lot of training today.  Tomorrow morning we go in for CPR training and then I will stay and "room-in" with Michael.  It should prove to be interesting.
I brought his car seat in tonight for his car seat test.  That's such a good sign.  I can tell you right now that we will NOT be at church this week-end and probably not the next either.  Michael can't be moved around a lot. He had a huge apnic (stop breathing) episode last night and was throwing up and choking (due to his reflux).... so we shouldn't move him during fee…

When Life Burns Your Shortcake...

...you make yourself a blizzard.  Things have not been going well.  Okay, they've been  okay but for me they have not been well.  Michael's surgery started off on the wrong note.  They didn't tell us when the surgery was.... they told us they would call.  We kept calling them and calling them and calling them and they still didn't know.  I called at 7:30 the day of and they still didn't know.  The doctors had mentioned that at the earliest it would be at 10 a.m.  So with that being said I went back to bed... only to miss the vibration of my phone at 8:15..... and they started surgery 10 minutes later... not enough time to get down  there... and we didn't plan on my mom arriving until 9:15... so crazy.
We get there and find out that during his surgery the balloon popped.  The balloon is on the inside of his stomach helping to hold the g-tube in place.  So they had to re-cut his stomach and place a new tube and balloon and then reclose him.  They gave  him some mo…

Surgery.

Michael has surgery later this morning.  He is getting a gastric tube put in so that we can feed him at home instead of keeping him in the hospital.  The plan also is for him to come home on a monitor which will alarm if he stops breathing or has a low heart rate.  I've had 3 hours of sleep the past 3 nights.  I feel pretty sick... sleep deprivation yuck!  
If you would pray that Michael would do well in surgery and recover well.  We're also hoping that he'll get to recover at Norfolk Sentara General (where he's been) instead of at CHKD (the children's hospital).
Looking forward to giving a good report.

Emotional Energy... or the lack thereof.

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The reason I haven't been online lately is because I have absolutely NO emotional energy.  I am so drained.  The thought of posting on my blog has made me want to cry so I haven't.  But now I'm ready.  Last Friday we had a consultation with the care team about Michael.  We discussed some therapy ideas to try this week for feeding but with the knowledge that surgery is the most likely option.  He's going to have a gastric tube put in (a "g" tube) so basically he's coming home with a feeding tube. He will get it removed later, after he has surgery to correct his cleft palate.  He also will come home on a monitor because he keeps having brady's and apneas (low heart rate, holding breath (stop breathing)).   He also struggles with severe reflux.  So, my life is about to get busier and more intense. I just talked with the surgeon's assistant tonight and the plan is for Michael to have surgery on Friday (late morning/ early afternoon).  I am excited that …

David & Courtney.

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This is David's girlfriend Courtney!  Isn't she beautiful?!  I have so enjoyed getting to know Courtney over the last several months.  She has such a beautiful spirit and is one of the most poised young women I have ever met.  She truly radiates Christ's love.  I am so excited to get to know her better.  Hold onto her David- she's a keeper! :)

"Little mama" on duty. Libby is always checking up on Ian to make sure he's doing ok.

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my cousin Anne.

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One of the reasons I'm so glad that I'm back in VA is being able to be so close to family.  My dear cousin Anne recently had a little girl named Lauren.  Lauren is almost 5 months old.  I am so blessed to have such a dear cousin and to see her daughter grow up. This is a picture of Anne & her husband Casey and their little girl Lauren.
I love you Anne!

30 years.

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My parents just celebrated their 30th anniversary this past Tuesday (June 10th).  I am so thankful for their example of love and devotion and a commitment to making their marriage work!  I am blessed to have them for parents and to see that they have such an amazing marriage.  I am thankful that they are still in love with  each other and are best friends.  I look forward to Mike and I celebrating our 30th... we're just coming up on our 5th in September. Happy Anniversary Mom and Dad! (these were pictures I took last year on their anniversary)

Twizzle.

Libby's new word of late.  Twizzle.  Which means twisted or braided.  I think she got it from asking me what I'm eating... which was of course twizzlers.  Since then she's asked for her hair to be twizzled.  She saw a picture of a girl with her hair in braids and said, "Look mommy, her hair is twizzled.  I want twizzly hair."  She was frustrated trying to put on a shirt... "Mommy, I can't get it on, it's twizzled".  The shirt was twisted.
Today she told me, "you're the best mommy ever!" Wasn't that sweet?!

28.

Okay, I had the best birthday ever!  I started celebrating it on Sunday with my family.  My parents and my in-laws, who are my other parents :), as well as my brother and his girlfriend as well as my brother-in-law and his girlfriend, my aunt and uncle and cousins and grandma all came over for lunch at my house.  We had marinated chicken, rice, and yummy salad... topped off with a delicious chocolate-chocolate cake.  I enjoyed chatting and laughing with my family.  Mike even asked people to give me encouragement... I was so touched that all my family shared something with me.  I was so blessed.
Monday night Libby and i made cucpcakes for my birthday.  Yellow cake mix with chocolate frosting... yummy.

My sweet love gave me my present early... a beautiful ring.  It's a pearl ring with two diamonds on each side as well as a sapphire on each side.  I'm not doing it justice.  I love it and I'm so thankful for his love for me.
On Tuesday (yesterday the 3rd) which was my birthday I …