Tuesday, November 30, 2010

Blog Button

Thanks to Symmetric Mom for making me a blog button!!  If you look on the right hand side of my blog, you'll see a cute picture with "Life as a Leach" written on it.  Here's how you can use it:

If you have a blog, you can save that photo by right-clicking and saving it on your hard drive.  Then go into the design and add a gadget.  Click "add a photo" and insert my blog button into it.  Then write my blog address as the url and it should work! 

So cute, Symmetric Mom!  Thanks!!  (Yes, I know her IRL* name, but she's trying to keep a super-secret identity on her blog...I don't want to give anything away!)

*In Real Life

Saying Goodbye

I really hate goodbyes. 

I always feel awkward--do I hug, do I not?  Plus, I can't keep my emotions in check long enough to be able to say a sincere goodbye without crying.  If it's the least bit sad or bittersweet, the tears will start a'falling.  It's guaranteed. 

Now that we're probably going to be transferred to Mount Washington at the end of the week, I will be having lots of goodbyes to say.

Goodbye to the amazing nurses who have taken such good care of Abby. 

Goodbye especially to Megan, Carrie, and Wendi, who have gone above and beyond in taking an interest in my girl and our family.

Goodbye to the sweet respiratory therapist, Natalie, who loves Abby so much and tells her often!

Goodbye the the desk staff whom we have seriously grown to love!

Goodbye to the security guards--the gruff and not-so-gruff!

Goodbye to my wonderful nurses from my lengthy stay in the anti-partum unit (which is right next to the NICU, so we see them all of the time)

Goodbye to my dear, sweet Marilou, who was so much more than a nurse to me.

So, yeah...lots of goodbyes.  It's a pretty safe bet to say that I'll be carrying lots of tissues and going sans-mascara for the next few days. 

Monday, November 29, 2010

A Skit

I am convinced that the government made the Social Security application absolutely ridiculous in hopes that people would just decide not to complete it.
I can just hear them now:

Government official #1: [evil laugh] Hehehe!  Let's see how terrible we can make this form.

Government official #2:  [rubs hands together villainously] Oh, yes!  Let's!  The more difficult it is, the fewer people will apply!  Then we can use the money we save the country on catered breakfasts for the staff!

Government official #3:  Ooooooh, I have an idea!  Let's make them collect the name, address, and phone number of every single doctor the patient has ever seen! 

Government official #2:  Great idea!  Then we can make them type each one in individually, even if they all have the same address!  [cackles]

Government official #1:  Let's not forget that we need to require all of the medicines the applicant has ever taken.  If they're sick enough to apply for disability, then that will mean a lot of medications!  Who's going to do that?!?

Government official #3:  [jumping up and down] Oh, oh, pick me!  Make sure you ask for descriptions of each medication and how long each was given!  NOBODY will have that kind of information!

[All cackle together]

Government official #2:  Yes, yes, these are all wonderful ideas!  I can almost taste the bacon and eggs now...


I mean, seriously, who asks for this kind of stuff?!?

Last Sunday

I keep forgetting to blog about the church service last Sunday. I must remedy that immediately!


The worship team at our church performed "Our God" as a special music selection. You may remember that we have adopted that as our family theme song and our worship leader knew it! He shared a bit of our story with the congregation, then let Caleb introduce the song in his own way. We had a video of Caleb singing "Our God" that my sister took, so they played that on the screen before the worship team started singing. Watching Caleb sing was enough to make me cry (in all honesty, I cried wayyyyy before that even started...), but the whole thing was just a really sweet gesture of love and support to our family. Looking around at the faces of people in the congregation and the choir, I think it meant a lot to everyone else as well. After all, so many of them have been traveling this journey with us!
If you want to listen to "Our God," check this out!  It's Chris Tomlin's live version.  I want to post the video of our worship team singing it, but it's a 20 minute video and I'm not sure how to edit it.  If I figure it out, I'll be sure to post it!



In other news: Abby's occupational therapist came to work with her today and was very impressed with how much better her hands were! She could tell I've really been working on them and even said that she didn't think there was any need for the braces after all! We sure showed them, didn't we Abby Girl?!

The Original

Today was my original due date, as determined by my first [of many] sonogram.  When I think about how Abby wasn't really supposed to be born until today, I am amazed that she is nearly six weeks old!  Of course, after learning about her small jaw, we were never going to go past November 8th.  Still though, it's crazy to think about how big Abby would be if things had been different.  She was 4 lbs at 34 weeks at half a pound a week, she could have easily been 7 lbs at birth!

Sunday, November 28, 2010

My Little Elf

Natalie is the sweet respiratory therapist who gave Abby several cute outfits--one of which was a Christmas outfit! 

So, I dolled my girl all up in her red outfit and did a photo shoot.  She didn't actually fit in the stocking like I had hoped, but I think I still got some cute ones.  These are a few of my favorites.  I wish that my background could have been better, but I'm limited in the NICU...

 I might try again some other time with either a white or Christmas blanket.

 Her pulse oxometer is on her foot and it glows red, giving the reindeer a Rudolphish appearance!
Seriously, how can you not fall in love with that little face?!?  Isn't she the cutest?  Don't you just want to hug her???

Saturday, November 27, 2010

It's Beginning to Look a Lot Like Christmas...

Tonight, Caleb and I decorated our little room at RMH for Christmas while Matt visited with Abby.  It was so much fun!  Christmas decorating is my favorite and something I look forward to all year.  I felt like something was missing all day yesterday because we weren't doing the traditional day-after-Thanksgiving-decorating that Matt hates so much! 

It's not much taller than Caleb (I think it's 4 ft tall), but we are definitely feeling a bit more in the Christmas spirit now that we have a little tree up!



We even hung up a string of lights, which thrilled Caleb to no end! 

Caleb summed it up tonight after Matt got back:  it feels like Christmas now!

Friday, November 26, 2010

Blogging by the Numbers

3:  Poopy diapers I changed in a 10 minute time-span today

0:  Desats Abby had today (yay!)

4: Pieces of episodes of "What Not to Wear" that I watched today while folding laundry, writing thank you cards, picking up our room, etc.



1:  Pieces of pumpkin pie I ate today

2:  Bars of power my cell phone has

1:  Family I know from home that served dinner tonight--small world!

6:  Months my kind shuttle driver has been in the U.S. after moving here from Kenya

3:  Kids in a very sweet family at RMH that we're enjoying getting to know

4:  Antibiotics I take each day

5:  Sweet potatoes sitting in water on the kitchen counter as the remnants of a science experiment a college group did


1:  Time a person told me today that I looked too young to have a baby (slow day today!)

13:  People asking if I can spell Cerebrocostomandibular Syndrome without looking (Yep!)

I Think She Dyed Her Hair When I Wasn't Around

Most babies' hair gets lighter as they get a bit older, right?  Not Abby's!  Her hair has gotten progressively darker.

When she was born, she had salt-and-pepper hair that almost made it look as if she had streaks of gray.  See it?


Check out her hair now.  It is definitely darker!




Alright, confess.  Who brought in the hair dye?!?

Thursday, November 25, 2010

Stream of Consciousness

Oh, it's been a while since I've done this, and I am pretty sure the last time I did, about 5 people read my blog.  So, for those of you who are new to the neighborhood, "stream of consciousness" posts are just the written form of whatever is going on in my little brain!  Enjoy...or be confused...

Abby now weighs 5 lbs, 1 oz and has officially hit the mark!  For your typical preemie, five pounds is kind of the magical number that points toward going home.  We know that this is just one of many, many pieces of the puzzle for us, but it's still a milestone nonetheless!  I gave her a bath today and she liked it even less than usual!  She threw quite a little hissy fit but settled down as soon as she was wrapped up and cozy again.  By now we know all of the nurses pretty well and don't have too many new ones anymore.  Today they only had 8 hour shifts because of the holiday, so we'll have 3 different nurses.  Her first two are wonderful, and I'm sure her overnight nurse will be too.  We have really been so pleased with the nursing staff at UMMC.  They are so knowledgeable and have taught me so much!  We enjoyed a dinner today at RMH with the other families.  It was a little different than the Thanksgiving dinner I'm used to, but it was really nice.  The family was a former RMH family whose son passed away from cancer last April.  They served this dinner as a way to give back to RMH.  I am feeling much better now and am able to visit Abby again without a mask.  My parents came up this evening to visit and bring some Thanksgiving leftovers, so I'm going to dig into them tomorrow for lunch!  Although, I'm getting kind of hungry now...maybe I'll nibble a bit now!  I am drinking apple juice right now and it's great. I have been trying to drink a lot more water recently to fight the caffeine urges, and it's working pretty well.  Caleb asked to sleep in the suitcase again.  Matt didn't know about last night's sleeping arrangements and was pretty confused...until he saw my face trying to stifle a laugh.  Then he was pretty shocked that I actually allowed it.  I defended myself by saying that he didn't actually sleep there anyway!  He's sleeping in his own bed tonight though!  Caleb wanted a quesadilla for Thanksgiving and was quite bitter when he found out that was not being served.  I think he finally ate all of one bite of stuffing, one bite of turkey, and a roll.  *sigh*  My dad got to hold Abby tonight for the first time.  Until now, Abby has either been uncooperative (or no one was able to hold her because of her condition), or my dad has been sick.  He was really excited to hold his fifth grandchild!  I missed our "typical" Thanksgiving and everyone who is there, but at least our little family of four was all together.  Too bad Abby couldn't enjoy a Thanksgiving meal, but I'm pretty sure her nurse Wendi snuck a little turkey in her feeding tube.  :)  We watched the parade this morning and Caleb really liked the musical performances.  The singing and dancing intrigues him!  I'm anxious to start learning sign language--not that I think we need to start using it right away, but that we will need to learn enough to be able to communicate with Abby as she gets older.  It also might not hurt to use it earlier than we really need to so that she can pick things up naturally.  We're confident that she can hear, although hearing loss won't really be determined just yet, but we will need to communicate with her in some way until she is able to talk with the trach.  This will probably be a while.  If anyone has any signing books or videos we can borrow, we would love them!  Well, I think that's the end of what is currently in my brain.  If you actually read all of this, I applaud you!  If you didn't...I don't blame you.  My mind is spinning a mile a minute.  :)

Thanksgiving Thursday

How can you not love this girl?!


There's no way I can focus on just one area of thankfulness this week!  After all, it is Thanksgiving!  I'm just going to list a bunch in no particular order.

I am thankful that...

First of all, Abby is with us!  There was a time when that was uncertain, so every second we have with her is a miracle!

She is actually able to be off of the vent for 4 hours at a time.  She's not completely vent-dependent.

I have been able to connect with Tara and Reagan, two CCMS moms who understand what we're going through.

We have so many family and friends who have been absolutely amazing and supportive of us through all of this.

RMH has been such a blessing to us and that we have met so many wonderful people here.

My sister has so faithfully watched Caleb and provided him with stability.

We are able to be together as a family on the weekends.

There are so many wonderful NICU nurses, nurse practitioners, respiratory therapists, and doctors who take great care of Abby.

We are even able to start talking about what things will look like when we bring Abby home.  We weren't sure that day would come, and it's exciting (but scary!) to even think about it!

Keeping it Real:  I know that I write a lot about choosing joy and how thankful we are for everything.  And we do, and we are.  However, that does not mean that we are perfect with it!  There are many, many times when I have asked the why me question.  I have shed enough tears to fill the Bay, and I still struggle with wondering why other people who don't even want their babies have the healthy ones.  


It's just that we know for certain that God is and will continue to use Abby's life in awesome ways.  So we can choose to be angry and bitter, or we can choose to be thankful and joyous.  Most of the time, we choose joy.  That's not to say that we don't sometimes choose bitterness!  But we try to choose joy.


I hope that you all have a wonderful Thanksgiving!

Wednesday, November 24, 2010

Jesus Lived in a Suitcase

So, tonight I was walking the fine line between letting some things go with Caleb's behavior because of his world being turned upside down and trying to maintain some sense of control. 

For some reason, he really wanted to sleep in our suitcase (it's a big one and it was open...don't worry!), so I relented and said sure.  (That was a bad idea in the long run, by the way--no sleeping was to be had while he was in the suitcase, so I made him get back in his bed eventually!)

Anyway, after he settled into the snuggly suitcase with all of his stuffed animals--and there are many--and his cuddle blanket, he remarked,

"This is kind of like what Jesus lived in."

We need to get that kid to Sunday school!

Of course, do you know the Christmas song that popped into my head at that point???

Away in a suitcase, no crib for a bed...

It's a new Christmas classic!

The Faces of RMH

We have met some truly beautiful people during our stay at RMH.  The staff has been wonderful--Sandy, the director, is so sweet and compassionate.  They are all pretty much amazing.

But I want to share with you some of the "faces" of RMH.  No, I'm not going to post pictures of the families, but I just want to paint a picture of a few of the people we've met.

Beautiful S, an 18 year old with Hodgkin's Lymphoma who is undergoing radiation treatments.  This little ball of energy wants to be a mechanic who works on ships and planes!  Because she won't be able to be around the fumes for a while, S decided to get her history degree so that she could be a history professor when she retired.  I love this girl!!  She just moved in a few days ago, but she'll be here for several weeks until her treatments are over.  They are actually just a hop, skip, and a jump away from us in Waldorf!

Patient M, the mother of B.  B is learning how to eat at Kennedy Krieger and is participating in a daily feeding program.  M is soooo good with him!  She patiently encourages B during meals and is so consistant with her reminders and praises.  It is an encouragement to me to watch a mother lovingly care for her special-needs child.  They have traveled here from Louisiana.

Strong-willed H, who is currently wheelchair-bound.  This is their second time at RMH while we've been here, so we've gotten to know them well.  H had limb-lengthening surgery in April and has been in a wheelchair ever since.  She is so determined to work through the pain so that she can get out of the wheelchair.  They travel from Nebraska for their appointments here.

Quiet little B, a boy with a serious condition called Bladder Extrophy.  He's had many surgeries over his 8 years, and it has not been an easy adjustment for him.  His mom and grandma have been here with him for five weeks during this latest surgery, far away from the rest of their family in Kentucky. 

Sweet baby N, who was born weighing only 12 ounces.  Miraculously, she survived with minimal complications and is now home with her parents after three long months in the NICU.  They come back often from their home in Hagerstown for outpatient appointments. 

There are many other families here as well: some fairly local like us, some traveling around the United States, and some from far-away places like Malaysia and Kuwait!  All of us have the same goal though:  going home!

Heaven Gained a Wonderful Man

Today, the world lost one of the most wonderful men I've ever had the pleasure of meeting.  Harry Darby was the worship leader at Grace Chapel, where Matt was the youth pastor for three years.  He was such an encouragement to me as a young married woman and even more so after I had Caleb. 

What I remember most about Harry was his energy!  This was a man who could jump around at 8 a.m. on a Sunday morning like he was already on his fourth cup of coffee!  Caffeine wasn't what gave Harry his amazing spirit though--God did!  Harry had a love for God that shone through everything he said and did.  To know him was to love him.

Harry was diagnosed with kidney cancer, and even through all of the treatments he was giving the glory to God.  One of his favorite quotes, "God is good, all the time!" was his motto right up until the end.  He lived a life of sacrifice and love.  While we will all miss him, we know that he is celebrating in Heaven tonight!

Wordless Wednesday

Tuesday, November 23, 2010

Horray!

Turns out, there is wifi on the first floor that is working, not just the internet on the two computers.  I'd love to have it in my room, but this is good enough for me!  Now, for some lovely pictures of some lovely children:



Caleb loves to "hold" Abby!  We never did get a picture of him smiling, but he really does love it! 
I am one month old!  (November 22, 2010)
 A family made three Build-a-Bears for us:  one for Caleb, one for Abby, and one for Caleb to give to an RMH friend.  He chose Baxter, and I think it was a good choice!  Here's Abby with her guardian angel and Baxter giving Caleb a big thank you hug for his bear!


We took an afternoon to go to the Baltimore Zoo.  This looks more like Calvert County than Baltimore City!

Slightly Under the Weather...

Last night, I started wondering if I was coming down with a cold.  I drank some tea and decided not to set my alarm for my usual 6:45 so that I could sleep it off.  I slept in a little but definitely felt yucky when I woke up.  It's nothing major, but the sore throat, achiness, and slight cough is enough to keep me away from Abby for the better part of the day.  I am going to stick around here, drink tea, take my vitamins (I take prenatals all of the time, along with DHA, vitamin D, calcium, and vitamin C!), write some thank you cards, and maybe catch a nap.  I will meet Matt over at the hospital later on today, but won't go in without a mask.  Better safe than sorry when it comes to my girl!  Let's hope that this is a one day thing and not my typical asthmatic bronchitis-turned-pnemonia that I usually get around this time of year!

I Would LOVE to Share New Pictures With You, But....

...the wifi is still not working at RMH.  They do have a computer station on the first floor that has working internet, but only 2 of the 4 computers work and there is usually a line to use them.  The hospital wifi works great, but Blogger and Facebook are blocked--remember?!  I have been posting from the first floor computer when I can get on (usually writing several posts at once and time-delaying them) but I can't load my pictures from here.

I promise though: as soon as the wifi is up and working again, I have loads and loads of cute pictures of my Abby Girl to show you (as well as a few of the equally adorable Caleb Boy!)

In other news:  I cannot WAIT to get the pictures back from the photographer who snapped pictures of our family in the NICU a few weeks ago.  I am expecting them sometime this week, and may just have to figure out some alternative way of  posting them if the internet is still not working.  I'm so excited to see them!!!!

Kindred Spirits

You've probably already read a bit about Reagan.  Remember, she's the mom of one of only a handful of kids who are currently living with CCMS?  I love that when you search for CCMS, her blog pops right up on top!  What a great way to get the word out about this crazy syndrome!

Anywho, Reagan's doing an interview with another woman about their life with a special needs child.  Hop on over to this blog to read Reagan's truthful answers to some difficult questions.  I can relate to so much of what she says!  Our circumstances will most likely be different once Abby is home, but our hopes and dreams for our daughters are very much the same.

Monday, November 22, 2010

Cerebrocostomandibular Syndrome

This is the official title of Abby's syndrome, otherwise known as CCMS.  Quite a mouthful, eh?  Let me break it down for you.

Cerebro:  relating to the brain.  We have no idea how Abby's development will be at this point.  Only time will tell, but we are extremely thankful that her brain is structurally sound.

Costo:  relating to the ribs.  In Abby's case, about half of her ribs appear to be floating in pieces on an X-ray.  It's almost as if someone took a baseball bat to her ribcage.  The pieces are actually connected with fibrous tissue, but her ribs cannot protect her lungs and heart like they are supposed to.  Her spine is also affected by this.

Mandibular:  relating to the lower jaw.  Abby's jaw is very recessed and small.  Because of this, her tongue (which is normal sized) is too big for her mouth and causes an obstruction of her airway.

We aren't exactly sure what kinds of surgeries Abby will be having, but here's what we know right now:

Her cleft palate will need to be repaired around age 2.  The spine will most likely require multiple surgeries to correct.  Thankfully, a world-renowned pediatric spinal surgeon is right here in Baltimore at JH!  We will be taking Abby for an evaluation to see if she will be a candidate for titanium ribs.  Yep, I know.  That sounds ridiculous and sci-fi.  But it's true!  Check out this website for more information.  She'll have many outpatient surgeries to expand the ribs a little at a time until the ribcage is done growing (around age 14 or so).  We're looking at upwards to 30 surgeries, but who's counting?

I am joining Reagan's quest to help families dealing with this extremely rare syndrome to connect with each other and hoping that it will show up in Google.  If you're reading this and you're saying to yourself, that's what my baby has! PLEASE email me!  I would love to talk to you!

In-SURE-ance?

So, I had an insurance meeting today.  Yes, another one.  Thankfully, this one actually involved completing an application!  It's not done yet (we have to submit a bunch of stuff that Matt is getting for me from home), but at least it is progress!

I headed back to RMH afterwards at about 1:45 to do laundry and work on some other insurance claims and the like.  Let me just tell you that, other than switching laundry, I spent the entire time until dinner at 6:00 doing something with insurance!  I faxed, I searched the internet, I filled out online forms, I talked to people on the phone, I completed paper forms....

BUT, I did feel fairly productive today.  I actually got somewhere with some of the phone calls, several important pieces to this complicated puzzle were faxed, part of the online form was completed (it's really long and in depth!), and paper forms were completed!

So, yay.  It's not the end of the tunnel, but at least the train is chugging!

You Might Be in the NICU Too Long When...

This is the complete posting of "You Might Be in the NICU too Long When..."  The new ones are at the top, with the rest of the collection after them.  I'll continue to add to it until we're out of the NICU!  :)

Your son knows where all of the broken slabs are in the sidewalk that make for fun rocking during the walk to the hospital.

You buy one of those big refill bottles of soap so that you won't run out...and actually think to yourself, I'd better not run out!

You actually encourage such landmarks because it helps make the walk quicker!

You can distinguish between a real and false Brady or Desat (and, for that matter, you know what they are!)

The terms Durable Medical Equipment, Private Duty Nursing, and Model Waver are a part of your everyday vocabulary.

You dream about filling out insurance forms.

You start referring to the Ronald McDonald House as home.

As far as you know, absolutely nothing is happening in the outside world.  The latest news is lost on you!

You are not the least bit alarmed when your child's vent tube comes detached.  You simple push it back in!

4 lbs, 12 oz sounds HUGE to you!

You can answer the doctor's questions about your daughter's care better than the nurse can.

Staff members from other units come in and ask you questions because they think you work there.
The gruffest, burliest guard knows you by name and actually becomes rather friendly.

You wear your yellow sterile gown all the way to the main entrance of the hospital because you're so used to it.

You have a favorite sink to scrub in.

You can fill the nurses in on different elements of your daughter's care.

People stop asking when you're going home.
The guys who run the shuttle know your story and you know theirs!

You look at the board with pictures of former NICU babies and can't wait to have your daughter's picture on it! 

Notification Emails

If you want to get notifications about blog updates, just send me your email address either by commenting on a blog post or emailing me at juliebleach@yahoo.com and I will add you to my list.  The post is actually sent to you in an email, so you don't even have to go to the actual blog site (unless you want to comment).

I hope this helps to ease the Caring Bridge notification withdrawal.  :)  (Which, by the way, is pretty delayed.  I was not up at 3 a.m. every night blogging--it just takes a couple of hours for the notification to be sent!)

I'm off to visit with my Abby for a while before settling in for yet another insurance meeting.  Trach care I can handle.  This insurance nightmare is a different story...

Exactly a Month ago Today...


...I gave birth to a beautiful, dark haired 4 lb baby girl named Abigail Elizabeth Joy.  Now that I have had processing time, I want to relive that night a bit.

I remember that she flew out so fast (because of all of the extra fluid) that the doctor nearly dropped her!  I'm glad I didn't actually see it, because I would have been totally freaked out by that!

I remember that I didn't hear her cry, and that worried me immediately.  Everyone wants to hear the baby cry.

I remember that we were unable to see her even for a second before the NICU staff wisked her away.  While we knew that her care was of utmost importance, it was difficult not to be able to bond with your daughter like under normal circumstances.

I remember the kind anesthesiologist being the one to give us occasional updates on her condition while they worked on her in the room across the hall.  He was the only one who was able to give us any information, and it was so helpful.

I remember that the same anesthesiologist was able to convince the NICU staff to let us see her for a minute before they took her downstairs to the NICU.  I was in shock at how tiny and quiet she was!

I remember that I never got to see her before they put the trumpet in her nose, so I had no real visual of her entire face until after she got her trach.  (We have never seen her without tubes)  :(

I remember asking the LD nurse what I needed to do in order to go see my baby.  She told me and I immediately got to work checking those things off of my mental list.  I was downstairs in record time!!

I remember feeling horrible that I didn't know which baby was mine when I walked into the door of her room.  There is nothing normal about not being able to pick out your baby because you only got to see her for a few seconds!

I remember the feeling in the pit of my stomach when the nurse practitioner took us over to her computer to see her rib xray.  I knew something was wrong the minute I looked at the screen.

I remember sitting by Abby's bed for a long time that night crying and praying that she would be okay.  It's funny how okay has a different meaning now.  Abby will be okay, but probably not in the way most would hope.  She will be more thanokay bcause she is perfect in God's eyes and will make an amazing difference in this world!!

So much can change in a month!  I can't say that I can look back on this last month and be happy about it, because it has been tough.  However, I can definitely reflect and say that God has taught me more in this last month than in my entire life!  I have learned utter dependence on Him, which is very difficult to learn when everything is a-ok!

So, as hard as it is, I can say that I wouldn't change anything about this last month--because if things had been different, if we had been able to "fix" Abby with a simple pill...then God wouldn't have been able to reveal Himself to us in so many new ways.  We would have missed out on so many conversations about God with people here at RMH and UMMC.  Abby wouldn't have been able to touch the lives she has already.  And I wouldn't have learned what it meant to truly choose joy.

Tough?  Yes.  Horrifying?  Absolutely!  But I know one thing:  our lives have certainly been changed for good!

Sunday, November 21, 2010

All I Want for Christmas

On Saturday, we went with my parents to Arundel Mills to get me some snow boots for a winter walking around Baltimore.  In Bass Pro Shop, Santa happened to be visiting and they were offering free pictures!  Caleb has no fear of Santa anymore and was really excited to tell him what he wanted for Christmas.

When Santa asked the very question that is on every child's mind all year long, Caleb answered very quickly.

I want Abby to come home.

Santa glanced up at us and noted the fresh tears falling before he asked Caleb who Abby was.  He explained that Abby was his sister and that she was sick in the NICU.  (We filled in a few details for Mr. Claus!)

Unfortunately, the reality is that Abby will not be home for Christmas.  However, we are going to be as close to her as possible (at RMH) so that we can celebrate Christmas with our entire family!  It wouldn't be Christmas without Abby Girl! 

We've prepared Caleb for this and he knows that we will be celebrating at RMH this year.  Now we're just trying to figure out how Santa is going to visit us!  Maybe he'll leave Caleb a note telling him the presents are in the car!

My Little Chubball

Abby weighs 4 lbs, 12 oz!!  Wahoo!  We are close to that magical 5 lb mark!  Go Abby!

In other news, we toured Mt. Washington Pediatric Hospital yesterday (where they will eventually send Abby for our trach classes and her transition home).  It is a really nice facility for when Abby is ready to go there.  We just don't want her to go too early and not truly be ready for it, because it is not a critical care unit like they have at UMMC.

In other, other news, the internet at RMH stopped working Friday afternoon just in time for the weekend!  I'm hoping that it will be back up and running tomorrow.  Sorry for the lack of posting.  I'm currently using the computer at my parents' house. (In case you ever wonder how I post at certain times, Time Delay is my friend!  I can set it to post at a certain day and time, which means I can write several posts at once and space them out.  This, for example, was written at 10 a.m. today!)  :)

Clarification

This is Julie's mom, Dotty, using her blogger account!

Many of you have asked Julie and Matt what you can do to help them.  What they appreciate most are your prayers and they have already felt the strength of those prayers.  They feel very uncomfortable sharing their needs with everyone and don't want people to feel they need to do anything.  Julie wrote an entry earlier encouraging people to contact me if they wanted to help and now she is feeling that entry may have been misunderstood.  As I saw her struggling with words to express to everyone that they in no way expect anyone to do anything, I offered to write this entry.  Sooooo....if you would like to ask any questions about helping....feel free to contact me at Schenk007@yahoo.com

Friday, November 19, 2010

The Most Beautiful Girl in the World

Sorry if you have other opinions...this is fact.  :)

The thinker

I'm tired just thinking about what they're going to do to me in a few hours...

Her first doll--Sara would be proud!




Semi-sucking her thumb
She has taken to holding onto her pacifier. The only problem is that sometimes she accidentally pulls it out!

You can finally see my beautiful girl's face sans tape!!!

Thursday, November 18, 2010

abby Updates

Sing-Along




Matt and I have both taken to playing songs on our iPods for Abby while we're with her. I have found that the music (carefully selected!) really calms her down when she's agitated. I feel like she is even starting to recognize some of the songs, like "Our God." Maybe it's coincidental, but she gets really excited and usually smiles when it is played. :)



Another song I play a lot is "What Faith Can Do" by Kutless. Here is a link to the music video on You Tube. http://www.youtube.com/watch?v=u1JBSQMkQEo



And here are the lyrics:



Everybody falls sometimes

Gotta find the strength to rise

From the ashes and make a new beginning

Anyone can feel the ache

You think it’s more than you can take

But you're stronger, stronger than you know

Don’t you give up now

The sun will soon be shining

You gotta face the clouds

To find the silver lining



I’ve seen dreams that move the mountains

Hope that doesn’t ever end

Even when the sky is falling

I’ve seen miracles just happen

Silent prayers get answered

Broken hearts become brand new

That’s what faith can do



It doesn’t matter what you’ve heard

Impossible is not a word

It’s just a reason for someone not to try

Everybody’s scared to death

When they decide to take that step

Out on the water

It’ll be alright

Life is so much more

Than what your eyes are seeing

You will find your way

If you keep believing



I’ve seen dreams that move the mountains

Hope that doesn’t ever end

Even when the sky is falling

I’ve seen miracles just happen

Silent prayers get answered

Broken hearts become brand new

That’s what faith can do



Overcome the odds

When you don't have a chance

(That’s what faith can do)

When the world says you can’t

It’ll tell you that you can!



I’ve seen dreams that move the mountains

Hope that doesn’t ever end

Even when the sky is falling

And I’ve seen miracles just happen

Silent prayers get answered

Broken hearts become brand new

That’s what faith can do

That's what faith can do!

Even if you fall sometimes

You will have the strength to rise





In other news: One of the respiratory therapists who especially loves Abby brought her two outfits today! She is so sweet...she said she was shopping for a baby gift, saw them, and just knew she had to buy them for Abby! I tell you, to know Abby is to love her!



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Thursday, November 18, 2010 1:40 PM, EST

Moving, Moving, Moving!



After a lot of thought, I have decided to move back to my blog. Don't worry---I will continue to post often about Abby's progress, but I have found that I have a lot more freedom for creativity on Blogger than I do on Caring Bridge. It's a wonderful non-profit organization that definitely served as a wonderful place for me to share about Abby when I couldn't get on Blogger at the hospital. Now that I can access it at RMH, I am going back to my first love! :)



So as not to deceive anyone, I have also posted about a new "project" I'm taking on through my blog. Every now and then, I may be writing a post reviewing a product or website. This is a paid position that I am trying out as a way to pay for some of our medical bills. I explain it in more detail on my blog, but PLEASE know that we in no way are trying to make money off of our situation. I'd much rather be extremely ordinary!! (Please also know that this is not the only--or main--reason I'm moving back to my blog. It has been something I have been thinking about for a while now and I just made the decision to join the paid blogger movement today!)



I know a lot of you have signed up for the post notifications on here, and you may miss that with my blog. If anyone knows how to set that up through Blogger, let me know!



Again, I have thought about this a lot and hope that you will continue to join us on our journey down our new path.



Blog address: www.lifeasaleach.blogspot.com

***I am having some formatting issues as I try to give my blog a bit of a makeover, so bear with me! It's a work in progress... :)

info

Q & A: The Medical Edition!




You guys had some awesome questions! I answered every one of them, but it's too long to put into one post. I have them all answered in a Word document and will cut and paste them into several different posts over the next few days. Plus, this way I can string you along as you eagerly await the next post! :) This first one is all about Abby's medical care. If you have other questions after reading these, send them my way and I'll try my best to answer them!





Have you had genetic testing?

Yes! We’ve had lots! I had an amnio done while I was in the hospital during one of my reductions (might as well put all that fluid to good use!). It came back fine. They tested Abby’s blood shortly after birth for the same things and it was also clear. They have sent more blood to a special lab in Atlanta that does extensive testing. This test will show the presence of CCMS and other very rare syndromes. When we get results back from that, they will send more blood away to test for a specific syndrome that could be attached to the CCMS called Carbohydrate Deficient Glycoprotein Syndrome. It’s an equally rare syndrome, if not more-so! Some studies I’ve read don’t even list the specific form they are considering for Abby because it is so rare—like maybe one or two cases. That’s about as much as I understand about it. After that, I get a bit blurry-eyed at the explanation of what is done.







Do you know what caused CCMS?

Ummmm… I think I need to invite our geneticist, Dr. Greene, to be a guest blogger on here. It’s some mutation of some gene and it can be passed down from parent to child. (Of course, Matt and I do not have CCMS, so this was not the case for us.) Thankfully, it is nothing that I did or didn’t do during my pregnancy. If Abby’s tests show that she has Carbohydrate Deficient Glycoprotein Syndrome, that will be our answer to the cause for the CCMS. That is about as specific as I can be. I do know that Boston Children’s Hospital is doing a research study to try to understand exactly why this occurs and which gene it is. I’m sure there is a much better explanation. Let’s just say I didn’t do too well on the genetics unit in 9th grade biology.







What is Abby’s prognosis?

If you’ve done any research at all on CCMS, you know that the odds aren’t great. However, Abby is proving every day that she doesn’t care too much for statistics and has decided to beat the odds! We will take her as she is and love her unconditionally. We won’t know the extent of the developmental delays until she gets a little older, but we are doing everything we can to aid in her development. We truly don’t know what is in store for Abby because there haven’t been enough cases to really tell us. However, we are extremely encouraged that Piper (another girl with CCMS) has symptoms similar to Abby’s and is 3 years old! We do know that infection is her biggest threat...and you thought I was a germaphobe before!!







Could future children also have CCMS?

Yes, the percentages for additional children having the same syndrome are pretty high. It’s amazing that the syndrome is extremely rare in the world, but then extremely common within families! I don't think we'll be testing out those statistics!







Why is Abby’s neck hyper extended in some of the pictures?

Right after she got her trach, they put a rolled-up towel under her neck to keep everything still and easily accessible. While they did have the towel under her for a while, it is usually only there for trach changes now. I think that some of the pictures may have just given the appearance of her neck being hyper extended.







What size and brand is Abby's trach?

Abby has a 3.0 Shiley trach. It's the smallest that Shiley makes. Since a smaller trach has to be on hand in case of an emergency when they couldn't get the 3.0 back in, they would use a 2.5 in another brand.







Will Abby be facing surgeries in the near future?

Aside from the trach surgery Abby has already had, she will be getting a g-tube (gastrostomy feeding tube) placed in her stomach sometime this week. This will replace the NG tube you see through her nose in the pictures. Abby also has a cleft soft palate that will need to be fixed. The surgery is typically done between 9-12 months, but the timing of the surgery will depend on how Abby’s respiratory status is. We may have to hold the surgery off a bit until she is more stable. Abby will also need multiple surgeries on her spine and ribs, but those will not be until she is a little older. Let’s just say that she will be well-acquainted with hospital recovery rooms!







Is the trach temporary or permanent?

At this time, Abby has a temporary trach. I use “temporary” loosely because she could have it for many years! However, a permanent trach could be put in if the doctors decide that her airway will never be secure otherwise. We are hoping that her jaw will eventually grow enough to allow her tongue to move forward and not block her airway.







What were the results of Abby’s Upper GI?

The test came back fine! There was a little reflux, but nothing out of the ordinary. They changed her calorie mixture from a human milk protein to a formula-based protein and she is tolerating that much better. We think that the spitting up was related to that. (Clarification: Abby is on breast milk, but they add a powdered mixture to it to increase the amount of calories she receives so that she can grow!)







How long do you expect to be at the hospital?

After Abby gets her g-tube placed, she will need to recover and grow a bit more. This will probably be several weeks. Hopefully at the beginning of December, we will be transferred to a pediatric hospital where they will do Abby’s trach rehab and our classes. We have to be trained on trach care (there is A LOT to learn) and have to pass tests on each piece. Matt and I will both be trained, along with possibly a few other family members to have as back-ups. We expect to be at the pediatric hospital another month. Therefore, we will be at RMH until after the New Year.







How often do you get to see Abby?

The NICU is open 24 hours a day. When I was still in-patient (and Abby was very, very sick), I was pretty much glued to her bedside. Now that we are at RMH, I walk to the hospital after breakfast so that I can be there in time for rounds. I am always there by 9 a.m. and do not usually leave until between 4:30-5. After dinner at RMH, I go back to the hospital at 7:30 after shift-change and stay until 9:30 or so. Thankfully, there is a 24 hour shuttle from the hospital that will take me back to RMH so that I don’t have to walk at night!



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Monday, November 15, 2010 11:46 AM, EST

This is the first of a new series, “Monday Mornings With Matt.” There are 3 ways that you can tell it is Matt really writing.



1. Spelling is bad.



2. Different point of view on things.



3. I like to list things, my brain works that way so my writing comes out that way.



Without further ado here is the first installment of Monday Mornings With Matt (or MMM for short, said as if you just ate a bite of juicy steak.)



The Little Things



I have noticed that it is the little things through all this that have become very special. Let me give you a few examples. A hug from a two year old on her birthday and having her rub your shoulder like she is comforting you is special. A hug from a teenager who is looking outside of their own little world, which is rare, because they want to comfort you. My son running up to me after 12 hours of not seeing me and yelling I missed you. Seeing my wife smile at Abby. Abby opening her brown eyes and looking up at me. A nurse who offers a chair. A smile form the security guards, who are starting to call you my name. The people at the hospital knowing your name. Quick phone calls from Julie. Texts from Julie. Meals provided by volunteers. Cards from friends and family. People who tell me they love me. People who tell me they are praying for us. Short visits from church family members in my office. People who just let me talk without interruption. Notes from people saying that they miss me. All four of us, Julie, Caleb, Abby, and me together.



Little things that mean so much. Our God is bigger and He uses the little things. Thank you to you all.



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Monday, November 15, 2010 5:18 PM, EST

Q & A Part 2



Why would Abby need blood?

She has had lots of blood taken from her over the last 3 weeks through her arterial line (which she no longer has) and none replaced. She also had a surgery that involved trauma and blood loss, so her little body couldn’t quite keep up with all of it. Her numbers weren’t really low—just borderline anemic. If she hadn’t been otherwise symptomatic, they would have left her alone. I’m actually kind of glad they didn’t try to wait it out because there has been a huge improvement since the transfusion! Plus, she needs to be healthy for her pending g-tube surgery.







Do you enjoy visitors at the hospital?

We do love to visit with people, but the stress of our situation doesn’t allow us to be overly entertaining or wonderful company! We are kind of taking visitors on a day-by-day basis according to how things are going that day. In addition, only people who have gotten a flu shot can visit Abby. This is a NICU rule and one that we strictly follow. We also need to be very careful about people visiting her who have been/are sick. This includes a slight cough or sniffle. If Abby catches a cold, it could turn into something very, very serious. Her respiratory system is not strong enough to fight an infection. If you would like to visit, please contact us directly. Often, we don’t have a lot of notice for Abby’s procedures. We normally touch base with people in the morning to see if that day will still be a good day to visit. I’m sorry if we seem to have a lot of rules about visitors. We know you’ll understand that we are trying to protect Abby while also allowing ourselves space to process and just “be.”







How much time do you spend with Caleb?

Caleb is in preschool during the week on Tuesdays and Thursdays. We want him to continue this for consistency, so he stays with my sister for the most part. Matt brings Caleb up on Thursdays and he stays for the weekend. Naturally, this is all very subject to change—and pretty much has, for one reason or another, every weekend! We love our boy so much and want to be with him as much as possible! Learning to spread your love between two kids is hard enough without one of them being seriously ill!







Does Caleb stay at RMH when you’re at the hospital?

Things are a bit trickier when Caleb is here. Often, one of us will stay at RMH in the morning with Caleb while the other goes to the hospital to hear the doctors round on Abby. Then we all meet up at the hospital for a while and we take turns with Caleb in the waiting room. When he is healthy, he goes in for short visits as well. Unfortunately, he’s had a cough that has stuck around for a while and we do not want to take any risks with Abby. We also often have family members come up on weekends and they also take turns hanging out with Caleb while we are at the hospital. That has been a huge help, because then we can go see Abby together. We have been trying to find a balance of being with Abby while also spending time with Caleb, so we make sure that we carve out some time when both of us are able to be with him at the same time.







Can we send things to RMH?

While we love getting mail here, Caleb especially, please be careful about what is sent. We have open mailboxes and have had at least one instance of something being taken out of it. (We left something in there that had been donated so that Caleb would have mail to get when he came, and it was gone when he went to get it.) :( This saddened me to no end, but there are definitely people with varying backgrounds here. If it is something that you really want us to receive, it would probably be best to send it to our house (my sister gets our accumulated mail at the post office a couple of times a week) or give it to a family member. We do love getting cards in our mailbox though!!



Email Notifications

Alrighty, I have semi-figured out how to do email notifications.  Basically, I will make a yahoo group for the blog and send out a forwarded notification to you.  I think there is a better way to do it and I'm getting there, but this is doable.

You can also click "Subscribe to My Blog" on the right side and it will show up on the front page of a couple of different email sites.  To my knowledge, it won't email them to you, but it will display links to the last few posts.  It's still kind of fun though.  I subscribed to my own blog just because it made me happy!

Sooooooooooo, if you are so hungry for my blogs that you absolutely must know the moment I hit the publish button, just send me your email address and name.

OR, if you just find it more convenient to have them emailed to you, you can send me your email address and name too.  I'll just pretend you can't live without my writing.

Thankful Thursday

Ah, how I have missed Thankful Thursdays!!!

I am always thankful, but I have pretty much been a blubbering, I-am-thankful-for-everything-and-can't-say-it-without-crying mess these days!  My sister commented on how I am much better at writing out my feelings than I am saying them because I don't start crying...she's sort of right.  I still cry, but you can't hear or see it.  :)

Anyway, this week's Thankful Thursday is totally dedicated to my amazing husband.  We've been married for 6 1/2 years and I don't think that either of us invisioned this sort of situation when we said our vows.  Sure, we went through your average young married couple trials and definitely struggled to make ends meet those first few years.  But who really thinks about in sickness and in health translating to as your daughter fights for her life?!

So, I'm going to brag on him a bit.  Matt has been a rock through all of this. When I say all, I mean right from the beginning.  Abby was difficult right from the start (the start being almost two years ago), and somehow Matt just knew that God was going to take care of it.  This frustrated me to no end made me love him even more!  (If you haven't already picked up on it, I tend to have control issues...) 

Since Abby's birth, Matt has been the one I've been able to lean on the hardest.  On my darkest days, I was able to be completely honest with him about how I was feeling without fear of judgement, and there were many times when he just held me while I cried. 

Now, he is back to work and traveling many hours back and forth.  There are times when Matt is home alone and isn't able to see Abby at all, which I know is hard on him.  He loves his girl and enjoys any Daddy-Daughter time he is able to get!

Then there's Caleb.  I've never seen a boy love his daddy like Caleb loves Matt.  He runs and jumps in his arms whenever Matt walks into the room, shortly followed with, "You wanna wrestle?"  Matt loves to spend time with Caleb and is such a wonderful, hands-on father.  I know that the way he interacts with Abby will need to be different, but there is no doubt in my mind that he loves her with the same fierceness!  Trust me, I've seen the way he looks at her!

So, try not to be jealous ladies.  I do have a wonderful husband!  I knew it before, but I have definitely gained a greater appreciation of him in the last six months--especially in the last two.  I am so thankful that God paired us together.  <3

Craziness

To the right of the blog is a little button that allows you to follow me.  Please do!  I like to know who is reading...I'm  nosy that way.  Also, in order to comment, you have to be a registered user.  It's not hard to do, but the reason I have it set up that way is that I had a few anonymous comments that creeped me out a bit in the past.  This way, I can see who is commenting.  The positive:  I can comment after your comments if you ask me a question or say something I want to respond to!  Yay!  :)

Tomorrow I have a big insurance meeting with my social worker and case manager to try to wade through an ocean of paper work, claims, policies, approvals, and other various kinds of red tape.  I will be spending my evening making sure I'm prepared!  It probably would have been easier if the social security, Medicaid and insurance phone calls I'd made (daily for the last week) had been returned, but I'll just have to deal with what I've got.

In other news: I didn't get to see Abby Girl too much today.  They were unfortunately transporting a very sick little guy to Hopkins most of the afternoon (it gets really crowded when that happens so parents can't come in), and then one of the nurses got sick...literally.  Yuck!  Add to that a procedure for another baby and it was pretty much a hi\Abby how's it going gotta run now I love you ba-bye kind of a day.  Hopefully things will be a little less exciting tomorrow. 

In other other news:  I am extremely humbled and thankful for the generosity of so many people.  Matt and I are speechless at the number of people who have come along side of us during this difficult time.  I'm not really sure how to truly express our thanks because a thank you note seems so trivial, but rest assured that we will be paying it forward!

Disclosure Post

In light of our medical bills and at the encouragement of many of you, I have decided to try to put my writing skills to work.  At times, I might be writing a review of a certain product or website.  These will be sponsored by advertisers and I will be paid.  I am required by the company I am working with to write a disclosure post so that everyone knows.  If this bothers or concerns you, please know that I am in no way trying to make money off of our current situation.  I hope that by now you can feel the depths of our love for Abby through my writing and we would much rather be a boring, normal family! 

God has other plans for us though and I am actually hoping that taking this avenue gets our story out and that we can be an encouragement to even more people!  I am learning that God has given me the gift of writing and if I can use that to help ease our financial burden a bit, I figure it is worth a shot! 

I will not accept any advertisements that compromise my beliefs or make me feel uncomfortable.  If at any time I start to feel that I don't like the way my blog is heading, I will simply stop writing reviews!

I am trying this out, but am also open to other ways to keep a paid blog.  I've been researching and this looks like a good company to work with. If you have other thoughts or suggestions, please let me know!

Please contact me directly if you have questions or concerns.  :)

Moving, Moving, Moving!

Caring Bridge was good to me, but I like the freedom of Blogger.  I have much more room for creativity on here, can post pictures easier, and can respond to individual comments.  I know, I know, you will miss having my blog notifications emailed to you.  If anyone knows how I can set it up so that we can do the same thing with Blogger, let me know.  Please, please, please don't stop reading just because you don't get them emailed to you!  I promise to continue to update you often on Abby's progress if you promise to continue to eagerly await the next post.  :)

I'm cutting-and-pasting the last few updates here so that you can read them if you missed seeing them on Caring Bridge.

Sing-Along


Matt and I have both taken to playing songs on our iPods for Abby while we're with her. I have found that the music (carefully selected!) really calms her down when she's agitated. I feel like she is even starting to recognize some of the songs, like "Our God." Maybe it's coincidental, but she gets really excited and usually smiles when it is played. :)

Another song I play a lot is "What Faith Can Do" by Kutless. Here is a link to the music video on You Tube. http://www.youtube.com/watch?v=u1JBSQMkQEo

And here are the lyrics:



Everybody falls sometimes

Gotta find the strength to rise

From the ashes and make a new beginning

Anyone can feel the ache

You think it’s more than you can take

But you're stronger, stronger than you know

Don’t you give up now

The sun will soon be shining

You gotta face the clouds

To find the silver lining



I’ve seen dreams that move the mountains

Hope that doesn’t ever end

Even when the sky is falling

I’ve seen miracles just happen

Silent prayers get answered

Broken hearts become brand new

That’s what faith can do



It doesn’t matter what you’ve heard

Impossible is not a word

It’s just a reason for someone not to try

Everybody’s scared to death

When they decide to take that step

Out on the water

It’ll be alright

Life is so much more

Than what your eyes are seeing

You will find your way

If you keep believing



I’ve seen dreams that move the mountains

Hope that doesn’t ever end

Even when the sky is falling

I’ve seen miracles just happen

Silent prayers get answered

Broken hearts become brand new

That’s what faith can do



Overcome the odds

When you don't have a chance

(That’s what faith can do)

When the world says you can’t

It’ll tell you that you can!



I’ve seen dreams that move the mountains

Hope that doesn’t ever end

Even when the sky is falling

And I’ve seen miracles just happen

Silent prayers get answered

Broken hearts become brand new

That’s what faith can do

That's what faith can do!

Even if you fall sometimes

You will have the strength to rise

In other news: One of the respiratory therapists who especially loves Abby brought her two outfits today! She is so sweet...she said she was shopping for a baby gift, saw them, and just knew she had to buy them for Abby! I tell you, to know Abby is to love her!

Carrie Underwood
Last night, Matt and I had the opportunity to go to the Carrie Underwood concert. Tickets for various events often get donated to RMH, but this is the first time we've accepted them. I was hesitant and struggled with feeling guilty or that people were going to judge us. I didn't even post anything ahead of time because of that! But Matt (and others) convinced me that it wasn't a bad thing to take one night off, and Matt and I have not been anywhere alone together besides RMH and the hospital in 2 months!


It was a really nice evening, even if it wasn't quite Matt's style of music. He appreciated the musicians and the performance though. Carrie did some crazy stuff that including being suspended on a swing, flying through the air on the back of a blue pick-up truck, and wearing a LED-lit dress that had it's own light show! We both agreed that it was pretty cool. Unfortunately, I couldn't take any pictures because they wouldn't allow me to bring my "professional" camera in. It did NOT say on the website that SLRs were not allowed! Sigh...

I missed my Abby and we called twice, but she was sleeping off the anesthesia and didn't wake up at all anyway.

G-Tube
Abby's g-tube placement went well. There were no problems and she is sleeping it off now!


Here is is...the last installment of the Q & A! (with a few light-hearted ones too!)

Since your hospital stay was sudden, how did you do your plans for school? Well, I didn’t! Thankfully, I have a wonderful team and administration who all pulled together to make it work. Teaching honors reading means that I am pretty much on my own, which made grabbing stuff a little harder on my team. Unfortunately, those first few days of my hospitalization were so full of stress, procedures, and ridiculous amounts of mind-altering medicine that I was absolutely NO help at all to them! Once things at the hospital slowed down and I was able to focus again, I did a lot of typing and emailing things to my sub. However, the bulk of that first week or so was taken care of by my team. They are awesome! I have to also say that my long-term sub has really taken on quite a responsibility and just run with it. He stepped into a difficult situation and has done really well!

Has your principal been supportive of your situation?

If she weren’t, I certainly wouldn’t be answering this question! J YES, my principal has been amazing!! She has not only been really helpful in lesson-planning and providing support to my sub, but she has also been incredibly encouraging to me! She often sends me “just thinking of you” emails and posts notes on the site. She has also been great about answering the more technical insurance and job-related questions because she knows that my detail-oriented mind needs those answers even now! I seriously couldn’t have asked for a more supportive principal through all of this.

Does Piper [the little girl who also has CCMS] live in the hospital?

Yes, she does. Her condition is too serious for her to be safe at home. Living in the hospital is just the best place for her to be. I’m sure that must have been a difficult decision for her parents, but we all want to do what is best for our kids! You can check out Piper’s story at www.reagansblob.com In case this question is come up, our plan is for Abby to come home. Her doctors believe that she will be able to, but we will ultimately do what is safest for her.

What is your favorite food?

I like Fuddrucker’s bread, broccoli casserole, crab chips, Reese’s Peanut Butter Cups, Brussels sprouts (for real!), and pomegranates.

Do you miss driving?

Actually, not really! I haven’t driven since September 19th and haven’t really thought about it at all! I’ve had other things on my mind, I guess. Plus, I really like the walk from RMH to the hospital and am starting to feel like a real city girl. I never thought I’d see the day when I would cross streets in between cars and navigate my way around a humongous hospital. I’m doing a lot of things I never thought I’d do…

Is it safe for you to drive?

Yes, I believe it is. Thanks, Amy, for the vote of confidence. If I am a bad driver, I blame you. You taught me!

Do you think you’ll be getting your own TLC or Discovery Health show?

Well, if they will help pay our medical bills, we most certainly will!!! J (Betsie Camilliere, you make the call and we’re there!) In all seriousness, we’re definitely learning about insurance benefits in a whole new way. Major medical claims take on new meaning for us!

How are you juggling the demands placed on you?

Ha, I really don’t know! Yes I do. That’s a lie. It’s God…100%, totally God. I could never, ever, EVER do this on my own. I would have had a nervous breakdown by now. God has truly granted us enough grace for the moment to get us through. We are starting down a path that is unknown and scary, but God knows exactly what is going to happen. He loves Abby and has an amazing plan for her. We just can’t quite see it yet!

We are also relying heavily on lots of wonderful family and friends! As I have mentioned many times, my sister has been amazing with taking Caleb. He can be a handful and she is taking it all in stride. My family has been available to bring us things from home, watch Caleb here, bring dinner, etc. Matt’s brother raked leaves and cut our grass for us. We’ve had lots of friends helping out by making meals, sending care packages, watching Caleb at church, etc. We could never do all of this alone. We’re definitely blessed!!

The nurses in the NICU have been amazing and we are incredibly thankful for them. They allow me to participate in Abby’s care and are beginning to teach me some of what I will need to do when we take her home. Every little thing I learn is helping me to feel more comfortable, so I eagerly do whatever I can! I know I’ve mentioned the awesomeness of Megan before, but Carrie, Wendi, and Christie have also been wonderful at allowing me to be an active participant in Abby’s care.

I’ll say it again; RMH has been such a blessing to us! Every meal they provide means one less that I have to worry about making (or, more likely, buying!) and the activities they have for Caleb are so wonderful! The books that were donated this weekend were a lifesaver for us more than once! I really can’t say enough about this wonderful organization. It’s not home, but it is as close as we can get right now.

How are you doing? As a new mom recovering from delivery, have you been able to rest?

Well, no…not so much! I blog at night after getting back from the hospital, wake up several times a night to pump, and my alarm goes off at 6:45. However, God obviously knew that I would need to be there for Abby. He gave me an easy delivery and an almost non-existent recovery. I seriously felt absolutely fine just a few days after having her. By the time I left the hospital, I didn’t feel like I’d had a baby. And no, I didn’t have an easy delivery/recovery with Caleb—quite the opposite! I’m so thankful that God allowed me to focus on Abby. He is also giving me a lot of energy that I didn’t know I had—all without the assistance of caffeine!

If you read all of this, good for you!! You're pretty darn dedicated. :) Shoot me further questions and I'll answer them every now and then on here.

Wednesday, November 17, 2010

Abby Updates

Abby will be getting her g-tube placed tomorrow "mid-morning" hospital time (translation: around 3:00 p.m.!) She does not have to have the nissin, a more extensive procedure done to prevent reflux, so the surgery and recovery should be fairly simple.




Of course, any kind of surgery makes me anxious and I'm going to be alone during this one, so please pray for us tomorrow!



She will be without feeds for a day or two, which will probably mean a little weight loss. Hopefully, we'll be able to get it back quickly (they increased her calories again) and finally reach that magical 5 pound mark!



Also, please pray for us as Thanksgiving approaches. I seriously had no idea how close it was and was hit hard with the reality that we will be spending the holidays away from home. While we are incredibly thankful for the Ronald McDonald House, we would much rather be home with our entire family of four.



However, we're trying to focus on everything for which we can be thankful---mainly, that Abby is here with us!!! I've also been truly thanking God recently for Dr. P, the surgeon who placed her trach. He saved Abby's life with his decision and quick thinking. A thank you note is so trivial in comparision with what he did, but it will have to do. We also are SO thankful to all of you who have come along side of us and prayed, send cards and gifts, made food, provided for a physical need, etc. Our family and friends are the best!



Alright, enough jabber for tonight. I really do need to get to bed earlier. This morning I broke down and drank a Coke to keep myself going, which I rarely do. NO MORE! :)

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Tuesday, November 16, 2010 11:21 PM, EST

Abby's g-tube placement went well. There were no problems and she is sleeping it off now!



Here is is...the last installment of the Q & A! (with a few light-hearted ones too!)





Since your hospital stay was sudden, how did you do your plans for school? Well, I didn’t! Thankfully, I have a wonderful team and administration who all pulled together to make it work. Teaching honors reading means that I am pretty much on my own, which made grabbing stuff a little harder on my team. Unfortunately, those first few days of my hospitalization were so full of stress, procedures, and ridiculous amounts of mind-altering medicine that I was absolutely NO help at all to them! Once things at the hospital slowed down and I was able to focus again, I did a lot of typing and emailing things to my sub. However, the bulk of that first week or so was taken care of by my team. They are awesome! I have to also say that my long-term sub has really taken on quite a responsibility and just run with it. He stepped into a difficult situation and has done really well!







Has your principal been supportive of your situation?

If she weren’t, I certainly wouldn’t be answering this question! J YES, my principal has been amazing!! She has not only been really helpful in lesson-planning and providing support to my sub, but she has also been incredibly encouraging to me! She often sends me “just thinking of you” emails and posts notes on the site. She has also been great about answering the more technical insurance and job-related questions because she knows that my detail-oriented mind needs those answers even now! I seriously couldn’t have asked for a more supportive principal through all of this.







Does Piper [the little girl who also has CCMS] live in the hospital?

Yes, she does. Her condition is too serious for her to be safe at home. Living in the hospital is just the best place for her to be. I’m sure that must have been a difficult decision for her parents, but we all want to do what is best for our kids! You can check out Piper’s story at www.reagansblob.com In case this question is come up, our plan is for Abby to come home. Her doctors believe that she will be able to, but we will ultimately do what is safest for her.







What is your favorite food?

I like Fuddrucker’s bread, broccoli casserole, crab chips, Reese’s Peanut Butter Cups, Brussels sprouts (for real!), and pomegranates.







Do you miss driving?

Actually, not really! I haven’t driven since September 19th and haven’t really thought about it at all! I’ve had other things on my mind, I guess. Plus, I really like the walk from RMH to the hospital and am starting to feel like a real city girl. I never thought I’d see the day when I would cross streets in between cars and navigate my way around a humongous hospital. I’m doing a lot of things I never thought I’d do…







Is it safe for you to drive?

Yes, I believe it is. Thanks, Amy, for the vote of confidence. If I am a bad driver, I blame you. You taught me!







Do you think you’ll be getting your own TLC or Discovery Health show?

Well, if they will help pay our medical bills, we most certainly will!!! J (Betsie Camilliere, you make the call and we’re there!) In all seriousness, we’re definitely learning about insurance benefits in a whole new way. Major medical claims take on new meaning for us!







How are you juggling the demands placed on you?

Ha, I really don’t know! Yes I do. That’s a lie. It’s God…100%, totally God. I could never, ever, EVER do this on my own. I would have had a nervous breakdown by now. God has truly granted us enough grace for the moment to get us through. We are starting down a path that is unknown and scary, but God knows exactly what is going to happen. He loves Abby and has an amazing plan for her. We just can’t quite see it yet!







We are also relying heavily on lots of wonderful family and friends! As I have mentioned many times, my sister has been amazing with taking Caleb. He can be a handful and she is taking it all in stride. My family has been available to bring us things from home, watch Caleb here, bring dinner, etc. Matt’s brother raked leaves and cut our grass for us. We’ve had lots of friends helping out by making meals, sending care packages, watching Caleb at church, etc. We could never do all of this alone. We’re definitely blessed!!







The nurses in the NICU have been amazing and we are incredibly thankful for them. They allow me to participate in Abby’s care and are beginning to teach me some of what I will need to do when we take her home. Every little thing I learn is helping me to feel more comfortable, so I eagerly do whatever I can! I know I’ve mentioned the awesomeness of Megan before, but Carrie, Wendi, and Christie have also been wonderful at allowing me to be an active participant in Abby’s care.







I’ll say it again; RMH has been such a blessing to us! Every meal they provide means one less that I have to worry about making (or, more likely, buying!) and the activities they have for Caleb are so wonderful! The books that were donated this weekend were a lifesaver for us more than once! I really can’t say enough about this wonderful organization. It’s not home, but it is as close as we can get right now.







How are you doing? As a new mom recovering from delivery, have you been able to rest?

Well, no…not so much! I blog at night after getting back from the hospital, wake up several times a night to pump, and my alarm goes off at 6:45. However, God obviously knew that I would need to be there for Abby. He gave me an easy delivery and an almost non-existent recovery. I seriously felt absolutely fine just a few days after having her. By the time I left the hospital, I didn’t feel like I’d had a baby. And no, I didn’t have an easy delivery/recovery with Caleb—quite the opposite! I’m so thankful that God allowed me to focus on Abby. He is also giving me a lot of energy that I didn’t know I had—all without the assistance of caffeine!



If you read all of this, good for you!! You're pretty darn dedicated. :) Shoot me further questions and I'll answer them every now and then on here.



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Wednesday, November 17, 2010 12:00 PM, EST

Last night, Matt and I had the opportunity to go to the Carrie Underwood concert. Tickets for various events often get donated to RMH, but this is the first time we've accepted them. I was hesitant and struggled with feeling guilty or that people were going to judge us. I didn't even post anything ahead of time because of that! But Matt (and others) convinced me that it wasn't a bad thing to take one night off, and Matt and I have not been anywhere alone together besides RMH and the hospital in 2 months!



It was a really nice evening, even if it wasn't quite Matt's style of music. He appreciated the musicians and the performance though. Carrie did some crazy stuff that including being suspended on a swing, flying through the air on the back of a blue pick-up truck, and wearing a LED-lit dress that had it's own light show! We both agreed that it was pretty cool. Unfortunately, I couldn't take any pictures because they wouldn't allow me to bring my "professional" camera in. It did NOT say on the website that SLRs were not allowed! Sigh...





I missed my Abby and we called twice, but she was sleeping off the anesthesia and didn't wake up at all anyway.