Monday, January 31, 2011

Q & A: The Home Edition

Way back when, they were supposed to do a chest x-ray on Matt and you to see if you had the same rib anomoly Abby has.  Did they do this? 

Quick answer:  no.  They never followed up and I never pushed it because I think we'd know if either one of us had pieces of rib connected with fibrous tissue. 

With all of the genetic testing you've done, has anything given you answers as to why this happened?

Nope.  We just got the results of the last set (I think that was the 5th set of tests) and everything was normal.  I guess that is good, but I'd really like to know what caused this.  It's kind of disconcerting not knowing how this happened.  Not that I'd feel better knowing that it was the kind of make-up I used or the amount of ranch dressing Matt ate, but still!  We will be joining a study at Boston Children's to help them research this syndrome.  While it won't necessarily help Abby, it will certainly shed some light on this craziness and possibly help future families.

Have you contacted any other families with CCMS?

I have talked with the mom of a 12 year old girl in NJ who has actually had the rib surgery and has found it very helpful.  I have also emailed a mom of a 6 month old girl in Chicago who is just a little further on this journey than we are.  Then, of course, I have talked with Reagan (Piper's mom) and have beeing trying to keep up with her blog when I have a chance.  It's interesting that of the 7 children alive with this syndrome, the 4 I know about are girls.  Significant?  Maybe!

Does Abby move her arms and legs?

She sure does!  When she gets mad, she starts flailing all around!!  Right now, at least, she has full range of motion.  The only slight problem we see is that she does tuck her thumbs in and tends to keep her hands in a fist.  She opens them on her own though, and can keep her thumb out when she wants to.  We work hard with that.  Just since we've been home, Abby has discovered her fingers and LOVES to suck on her left pointer finger.  It must taste good!  She gets really mad when she takes her own hand away and then doesn't put it back in!

How is Abby's schedule?

We are still working on that with the nurses, as some want to just let her sleep.  While I definitely acknowledge that she needs to sleep, she also needs to get her days and nights under control.  We also need to continue to work on her OT, PT, and speech therapy while we're waiting to start with Infants and Toddlers in the county.  Since we've been home from our most recent hospital stay, Abby has been awake much more during the day and sleeping pretty well during the night.  She gets continuous feeds at night so that the nurses don't have to wake her up to hook her feed up. 

How is your adjustment with the nurses going?

We're getting there.  We have been fortunate to find a wonderful group of nurses who really care for Abby.  Just as we had hoped, they treat her as our daughter, not a patient.  We hope to keep them for a long, long time!!  It's really hard to find nurses willing to travel where we are, so we don't want to give these ladies any reason to leave.  :) 

Most of the adjustment is just realizing that our privacy is more or less gone.  There will be someone else holding your baby, there will be someone listening to you argue with your husband, there will be someone watching how you deal with your four year old's's just an adjustment.  While we really like our nurses and are thankful for them (and we couldn't do it without them!!) it's also nice to have a little family time in the evening.  It's a little strange having someone watch you as you pray and sing with your son before bed (Caleb wanted to include Abby, so we did it downstairs), so I like that now we have that time to ourselves.

Yay for Internet!!

I'm sorry I've been MIA the last few days.  We've been without internet, but a person from Comcast came out today and we're back in business!  No time to post now, but maybe tonight!  :)

Friday, January 28, 2011

Feeling Like a Family

Tonight was our first night on our own.  I have to say that while this was a little intimidating, Matt and I were both really looking forward to it.  We were ready to take back a little of the family privacy we've missed!

The evening didn't disappoint!  With minimal effort, we brought Abby into the kitchen with us while we cooked and ate dinner.  It was wonderful!!  I didn't even want to get up from the table because I was just enjoying having our entire family there (with a few extra machines!) 

Later on, Matt brought down The Lion, the Witch, and the Wardrobe, which Caleb and he have been reading together.  (He LOVES it, by the way!)  I held Abby in the rocking chair while Matt and Caleb sat next to us and we all listened to Matt read a chapter.  Do you ever take mental snapshots of something you really don't want to forget?  I took one of that moment.  It was so nondescript...and so what we have been yearning for so long. 

We finally felt like a family.

And it was great!

Q & A: The Home Edition

Anybody have any burning questions now that we are home?  Ask away, and I'll answer them on Sunday night!  Email or leave a comment if you have something you'd like to know.  If I'm not ready to answer it publically, I'll let you know directly.  Otherwise, we're open books! :)

Learning From Experience

I'm a pretty reflective person, but having Abby has really caused me to look at things I do and why I do them in a totally different way.  With each new experience God gives me with my high-maintanence girl, I try to pause and think about how I'm feeling, what is going well, and what should change.

Cue reflection of Tuesday's events!!

As much as I hated the whole experience and would love to never have to go through something like that again, I am thankful that my first time was with my nurse and that I was able to learn from her.  While I'll never be comfortable in an emergency, I do feel like I would be able to handle it.

But we realized that we had some changes to make as well.  You think that you have everything in place for an emergency and plan so carefully, but you never know if it's right until it's really happening.  For one, the placement of our emergency trach was no good.  It was hanging from the IV pole where I couldn't get to it easily, and the plastic bag was hard to get off of the pole.  As I mentioned before, the package was really hard to open.  So, I made a few changes to that whole set-up by taking the trach out and putting pre-cut trach ties on it (yes, it is supposed to be sterile but the part that needs to stay sterile is the cannula (the part that goes into her body) and it was never touched.  We all agreed that having a technically non-sterile trach that is easy to get to in an emergency is much safer than wasting precious time trying to get everything set up.)  Then I hung the bag that the emergency stuff is in in a much more accessible area. 

We also decided to keep the O2 tubing connected to the ventilator, even though Abby doesn't typically get O2.  This way, if there is an issue, we can quickly turn the tank on and Abby can still get the pressure support she needs through the ventilator.  We have the ambu bag connected to the portable tank right next to her bedside cart so that it can be easily accessed.

The old ambu bag was put away because it does not have anything on it to show that the oxygen is flowing.  I was SO worried that it wasn't going because I couldn't hear or see any evidence!  The ambu bag we got from the hospital has a small balloon that inflates when air is flowing, so you can be certain that the oxygen is working.  I never really thought much of the old one not having the balloon on it, but it terrified me on Tuesday!  Thankfully, her color somewhat came back, so we knew she was getting it.

I typed up a brief medical history for Abby with her medicines, doses, diagnoses, doctors' names and phone numbers, etc.  I have all of this in my binder, but wanted a concise sheet that I could hand the medical personnel.  Plus, it cuts down on the amount of questions that I have to answer!  We're printing multiple copies to have in both cars, the to-go bag, etc. 

I also wrote an "In Case of Emergency" list that will be posted right by the front door to remind us of everything we need to take with us.  In my rush, I forgot my medical binder and the nursing binder, which had some information that would have been helpful.  (My mom brought it later to the hospital, but it would have been better to have it right off the bat!)  This list will be a quick check-off when our heads are spinning and the adrenaline is pumping.  Similarly, I wrote a "Do You Have" list of everything that needs to go with us whenever we take Abby anywhere.  This stemmed from the fact that the portable oxygen tank was left at home when we were discharged and we had to beg our supply company to bring us another one!  Who knows how much that'll cost us...

Since we were without some of the essentials during this last trip to the hospital, I decided to pack Matt and I a to-go bag as well!  Shampoo was the LAST thing on my mind when the ambulance left!  I have a bag packed with a change of clothes for both of us and basic toiletries in case of emergency.  The bag will stay in our closet all packed and ready to grab in an emergency.

I've made a bunch of phone calls to the dispatch and hospital to ensure that everyone is aware of Abby's condition and has us on the alert list.  CC just doesn't see many vented patients, and especially not ones so small, so I just need to make sure that everyone is extremely prepared.  Afterall, we live in CC and chances are, unfortunately, that there will be future emergencies.  I need to ensure Abby's safety!

Side Note:  I am well aware that 99% of you probably have no clue what I'm talking about here.  I know it's a bunch of medical mumbo-jumbo.  Until 3 months ago, it was foreign to me as well.  Feel free to ask me to clarify if you need some explanation! :)

Terrifying ordeal?  YES!  But we're bouncing back, learning from our experience, and thanking God for all of the ways He provided for us on that day.  Here are a few:

*  Just 15 minutes before the incident, I was alone with Abby.  Had it occurred just 15 minutes before, I would have had to handle it all by myself.
*  If this had occured on Wednesday during the snow, we probably wouldn't have been able to fly and the ambulance surely wouldn't have been able to respond as quickly.
*  My respiratory therapist attached and tested a travel circuit for our portable vent "just in case of emergency" only the day before.  We now understand the importance of keeping a circuit ready and attached!
*  Caleb was at school and was already being picked up by my sister.

God was certainly watching out for Abby that day, and we are so thankful for His provision and for the prayers of all of you!

Baby, It's COLD Outside!

Try to stay warm!

snuggled up

Thursday, January 27, 2011

I'm Still a Fighter...

...Just in case you weren't sure!
abby smiley


Wednesday, January 26, 2011

The Past 36 Hours

I apologize for not updating this sooner.  My laptop was the least of my worries as I was running out of my house!  Obviously, the last few posts were time-delayed!  Here's the scoop on the last 36 hours.

Abby had had a rough night Monday into Tuesday.  She threw up, which is something she never does.  Our night nurse was concerned that Abby was just generally unhappy and agitated, getting very little sleep that night.

Our day nurse was late that morning, so I was on my own for about 20 minutes.  Shortly after D got there, we noticed that Abby was wheezing and decided to give her a nebulizer treatment.  I  wanted to suction before because I could hear a lot of junk in there.  When I did, I felt a lot of resistance and didn't get anything.  We put her back on the vent for a few seconds while I got some saline to try to loosen the secretions.  At that point, Abby went into respiratory distress and turned blue.  We bagged her and gave her oxygen, which didn't help.  We decided to change the trach, which is no easy task when you're freaking out.  I had a hard time opening up the package--but we couldn't have it out beforehand because the trach is sterile.

After changing the trach and continuing to bag her, Abby went from blue to gray.  I called 911 immediately after changing the trach and made sure they understood that she was a trached and vented child.

While D continued to bag Abby, I set up the oxygen to go through the vent.  We quickly switched her over to the vent again and waited for the ambulance.  While we waited, we suctioned her and got a lot of bloody secretions (probably from the trauma of the emergency trach change.)

Once they got there at about 10:30, she was looking a little better and they asked if I still wanted to go to the hospital.  I said absolutely because she lost oxygen and I didn't want to take chances.  Something was obviously wrong!  It was a good thing that I insisted because she started having trouble again in the ambulance and they ended up taking her Priority One (really, really fast!!)

They quickly assessed Abby and noted that she was really laboring to breathe and extremely uncomfortable. All I can say about our local hospital is that I am thankful that they recognized that they were out of their league and quickly decided to send Abby to JH.

The doctor at the local hospital did the RSV test.  When it very quickly came back positive, they decided to medivac her to JH.  IThey allowed me to ride in the helicopter, and we left the ground at 1:30.

TWICE in the last four months, I have ridden in a medical helicopter!  TWICE.  Most people never do it in their lifetime, and I've done it TWICE in the last FOUR months!  Just once, I want to ride in a helicopter for fun, please.  Under different circumstances, I would have really enjoyed myself.  Just like last time, I was way too worried about my daughter's well-being to take in the sights!

We touched down about 2:00, answered the same questions 53 times with 53 different people, and were finally admitted to a room in the IMC at around 6:30.  We are actually in a large room with about ten other children, and there are always nurses present.  I stayed in the room last night but didn't sleep at all because of the noise and beeps.  If I'm going to be any good to anybody, I need to sleep tonight.  Thank goodness for RMH!  They found me a room and welcomed me back like an old friend!

Right now, they're monitoring Abby for signs of respiratory distress.  She has been weaned off of the oxygen and has been on room air since early this morning.  While she has slept most of the day, Abby had a good awake time where she was very alert and happy.  It was nice to see!  She is definitely looking better, but is still having a lot of secretions.

We're not exactly sure when we are heading home, but it depends on Abby's feeding and respiratory status.  They say that RSV is at its worst at day five, but we don't know if we have hit day five or not!  Hopefully we're past the worst of it.

Overall feelings about the last 36 hours?

I am thankful for the quick thinking of my day nurse.  She's a keeper!!

I faced my fear of not knowing what to do in an emergency and was able to keep my head.  We now know that we need to change the placement of a few things and I know what I need to do if this happens again.

I'm even more convinced than ever that one person should not be left alone in the house with Abby.  I'm not sure how either one of us would have done it all by ourselves.

Thank goodness Caleb was at school!!

Our respiratory therapist set up our travel vent with the circuit just the day before "just in case of emergency."  This was not an accident.  God certainly planned this!

Yesterday was a whirlwind for me and I am not sure I have fully processed what nearly happened.

I'm really not ready to be back in a hospital yet.  I think I'm going to develop White Coat Syndrome too!

Thank you Lord for protecting Abby and giving D and I the wisdom to know how to handle the situation.

I love my girl more now than ever.  Cherish every minute!!

Wordless Wednesday

abby big fish face

Tuesday, January 25, 2011

The View From Here

abby smiling

abby upside down

abby all snuggly

3 Months Old

I'm a little late posting this, but this picture was taken on the 22nd, so she truly was 3 months old.

abby 3 months 2

Monday, January 24, 2011

In Case You're Wondering...

...We're all loving being home!

abby and momma

abby looking up at daddy

caleb upside down

Sunday, January 23, 2011

The Hard Stuff

When you have a life-changing event such as having a medically-complex child, you are able to do a lot of self reflection.  Matt and I often chat about how we're feeling and what is hard for us.

Currently, one of the hardest things about our new normal is feeling like Abby is not completely ours.  We sometimes have to ask to hold her because the nurse has her, and we often have to check to make sure that we aren't repeating a care that the nurse has already done.  When we hold Abby and play with her, a nurse is in there...almost like supervised visitation. 

Don't get me wrong.  We have been really pleased with our nurses so far and LOVE our day nurse.  Since she'll be the one alone with Abby most often, we're so glad that we feel comfortable with her.  She loves on Abby and gives her kisses, and we are so happy that she seems to really enjoy being with us.

It's not them.  It's us.  We just have to get used to the fact that we can't do all of this on our own as we would like.  And that's hard.

Saturday, January 22, 2011

Momma and Her Girl


We're Adjusting

We are adjusting!  It's slow, but we're getting there.

We're adjusting to the idea that we need someone to help us care for Abby.

We're adjusting to the amount of stuff we have to take with us wherever we go.

We're adjusting to having one attention-seeking four year old and one attention-requiring three month old.

We're adjusting to having ridiculous electric bills because that's just how it's going to be.

We're adjusting to medicine and feeding schedules.

We're adjusting to having non-family members in our house, which is a very big adjustment.

We're adjusting to our new normal.

Easy?  Nope!  But we're getting there!

Friday, January 21, 2011

Long Awaited Pictures!

All ready to go!

Daddy and his girl

She kept looking at us like she had no idea why we were so excited!

I've been waiting a long time for her to wear this dress!

Heading home!!  She slept the entire way!

She opened her eyes as soon as we got home to see her new home.
All settled in her new bed!

Thursday, January 20, 2011

A New Day

Today was much, much better than yesterday!  I actually got all 4 things checked off on today's to-do list, and we made it to the doctor with only minor issues.  Caleb had school today (I took him for the first time!!) and Amy kept him afterwards so that we could go to the appointment, so I didn't have to try to keep him quiet all day.  It was a day of getting to know our day nurse and learning how to work together, and I liked it!

We were only 9 minutes late to our doctor's appointment, which I find quite an accomplishment considering the amount of stuff we have to bring with us.  Never mind that we started getting ready an hour and a half before we needed to be there...

And in case you're wondering what we brought with us to the doctor:  the pulse oximeter, apnea monitor, oxygen tank, ambu bag, ventilator, suction machine, the to-go bag (it's like a diaper bag times 10!) Abby's binder, my calendar, the nursing binder...oh yeah, and Abby!  Thankfully, it all fit pretty nicely in our trusty Sit-and-Stand stroller.  I love that thing!!

We had a great doctor's visit with our beloved pediatrician.  Everyone knew all about us and welcomed us home...I guess you have to brief everyone when somebody like Abby is coming in!  They told us we won't have to wait when we get there--they'll take us right back to a room and we'll also get the prime appointments.  This is nice because it cuts down on the amount of germs she'll be exposed to.  Dr. S was absolutely wonderful, as always, and we could tell he really did his homework.  He'd read her entire discharge summary and knew all of her ins and outs, which I love.  He'd done his research on her syndrome, which is probably my favorite thing about him--if he doesn't know something, he researches!  He even caught a missed vaccine that the hospital forgot to give her!  Dr. S was very pleased with Abby's development thus far and said she is more or less at the same place a typical baby would be.  (FYI:  I hate the term "normal child."  You won't hear me say that unless it's in quotes.  Abby is normal.  It's just a different kind of normal.)  Her neck control is still a work in progress, but you'd have trouble holding your head up too if you had vent tubing weighing you down!  All in all, Dr. S said she is progressing very nicely.  Yay, Abby!! 

I'm in much better spirits today and am getting into some semblance of a routine here.  Hopefully, Caleb will cooperate for us tomorrow! 

BTW:  I'm sorry there are no pictures yet.  They're loaded...I just have to get time to post them.

A Little More Time

I'm up early this morning because our night nurse needed to leave at 6:00 and our day nurse isn't coming until 8:00.  That!  It's actually alright though because Abby is sleeping soundly (she's not a morning person and is a real bear if you wake her up!), her continuous feeds are done, and she doesn't get fed again until 9:00.  I'm sitting right next to her, but I can actually be on the computer for a minute while things are calm.  (I can use the word calm because Matt has Caleb upstairs with him while he is getting ready--then we'll switch!)  :)

So, the last 40 hours have been crazy...SO much harder than I thought they would be.  I knew it would be insane, but I didn't count on all of the peripheral nurses wanting complete quiet in the room at all times.  That's been a bit of a challenge with Caleb, so we're trying to find a happy medium that will keep the nurse happy and allow Caleb to be a four year old! 

I think the hardest part is acknowledging that we can't do this on our own and that we NEED the nurses there to help us.  But it's frustrating when we have to ask to hold our daughter and feel like we're getting checked up on when we care for her.  I know they are trying to do their job too, but it's a tough transition.

The scheduling has already proven a bit difficult, as we had a nurse call out last night and then they had to scramble to get another one.  This one was brand new to us, but we liked her.  She had to leave at 6:00 and the agency forgot to tell us, but it worked out okay.

Our machines are a little bit frustrating because her apnea monitor and pulse oximeter go off constantly...for no apparent reason!  A rep from our DME company helped me troubleshoot the apnea monitor, and it does seem to be working better now.  The pulse ox just needs to be used for spot checks, so she won't have to wear that all of the time anyway.

So yeah...reality has set in, and it's hard.  What has been the most frustrating for us is that big, looooong meeting we had right when we got home--the "admission" meeting.  Have I mentioned how much I hate that term?!?  This is not a hospital.  This is our HOME!!!  We felt like the business-like attitude of that meeting robbed us of the joy we had of coming home, and it was unfair.  In retrospect, I should have just insisted that they come later.  At the time, I was scared to be without nurses for any length of time (nurses can't come until the "admission" has been done, so scheduling it later would mean that we would be on our own for a while.) but I wish we'd just done it.  Hindsight is 20/20.

Because of that and the fact that we've had nurses in our house 24/7, we haven't truly had a chance to just enjoy having Abby home.  In the quiet of the morning, I can...and I like it.  :) 

On a positive note, Abby is settling in quite well.  She was a bit irritable the first night and didn't go to sleep until 3 a.m., but we think she was just adjusting to her new surroundings.  The nurses give her tons of attention and spoil her with holding and rocking!  You should see her little smirk when they pick her up when she cries!  She's already got everybody wrapped around her little finger!

Please don't stop praying for us now that we are home!  This is just the next chapter in our story and it has its challenges too...many, many challenges.  But we are thankful to be home and thankful for the challenges because we love our girl.  We'll get to a good place...we're just crawling through the mud right now.

Wednesday, January 19, 2011

Really Quick Update

We're home and feeling absolutely overwhelmed.  We had a ridiculously long "admission" meeting yesterday with our nursing agency (yes, we hate the term admission....this is our house!) and never really stopped until we went to bed.  Sadly, it wasn't the emotional homecoming we were hoping for because of all of the business we had to attend to.  We weren't really pleased by this, but it's hard to "enjoy the moment" when a bunch of people are there waiting for you to sign papers and answer questions.


Today has been spent doing laundry, making phone calls, organizing things, moving her room around again and again and again, and trying to keep Caleb occupied.  That last one has proven to be quite a challenge! 

So that's about it.  I'll post more when things slow down a little and I have more time.  I have lots of pictures that haven't even been loaded on my  computer yet with no time to do it! 

Wordless Wednesday

anna close up

Tuesday, January 18, 2011

Our God is Greater

Abby is a miracle, and she is being used by God to remind people that He is bigger than statistics!!!  It wasn't the doctors who saved Abby, it was God.  Plain and simple.  This is an amazing day for us, but it is of no surprise to God.  He knew exactly what was going to happen and that Abby would be coming home.  He had January 18th marked in His planner for a long time and we are so thankful that He chose to spare Abby and use her here on Earth.  We love our little world-changer!

Right about the time this post will show up on the blog (remember, time delay is my friend!), we will be driving home with one of the two best gifts God has given us.  And we'll be singing this song LOUDLY!  Feel free to sing along!  :)

Our God is greater, our God is stronger.  God, you are higher than any other.  Our God is healer, awesome in power.  Our God, our God!


The day is finally here.  I am in utter disbelief.

As I type this, I am feeling so many emotions:  thankfulness, awe, disbelief, fear, amazement, anxiety, happiness, nervousness...but especially JOY!

Today, we will actually be checking OUT of the Ronald McDonald House, the place that has housed us, fed us, cried with us, and loved on us for the last three months.

Today, we will drive to Mount Washington for the LAST time (at least for a while!)

Today, we will sign a bunch of papers and get a bunch of information about Abby's final orders.

Today, Abby will wear a beautiful blue dress with a little white bow in her hair.

Today, we will walk out the doors with Abby in a carrier and put her in the car.

Today, we will drive away with our daughter and make the long two hour drive home (with me in the backseat, anxiously examining every movement and facial expression).

Today, we will listen to "Our God" on repeat the entire way home, singing at the top of our lungs.  And it will be awesome!

Today, we will return home to smiling faces cheering, "Welcome Home!!!"

Today, Caleb will show Abby around our house, as he has been so eager to do since she was born.

Today, we will ALL sleep in the SAME house TOGETHER!!!

Today, we will witness something that was so uncertain for so long...

We will be taking our girl HOME!!!!!!!!!!!!

When I think about how close we were to losing Abby, I am in serious amazement of the greatness of God.  He obviously had BIG plans for this girl and wanted to remind the doctors, nurses, and lots of other people joining our journey that He is bigger than statistics!!!!!!  Rest assured, I will be crying many tears of JOY today (as well as a few of fear and anxiety!) as we take our beautiful little girl home.

Thank you, thank you, thank you for your love and prayers the last three months.  Will you join us for the next part of this unlit path?

Monday, January 17, 2011


Can you believe that we will be taking Abby home TOMORROW?????

Seriously, I feel like I am in a dream, much like I've felt through this entire ordeal.  Except that this time, it's a good dream.

We had our big discharge meeting today and got reports from the various departments.  There were lots of dates and times thrown out, as well as a lot of discussion about nursing hours.  Of course!

Our plan is to be on the road by 11:00 and home to smiling faces by 1:00.  We have some "business" to attend to once we get home (admission paperwork with the nursing agency), but we will not let that get in the way of our celebration!!

Tonight, we're packing up the last minute stuff and making sure all of the equipment is charged up.  Then we're going to try to sleep...but knowing me, I will be too anxious and excited to do much!

Ahhhhhhh, I'm so excited!!!

Sunday, January 16, 2011

Coolest Present Ever!

For Caleb's birthday, we gave him a gift that keeps on "Ok to Wake!" alarm clock!!  This little guy, whom he affectionately named Wakey Wakey, is a regular alarm clock, a naptimer, can set it to tell kids when it is okay to get out of bed in the morning!!!  Yay!

You  may think this a little harsh, but you gotta understand...Caleb is a 6 a.m. waker...or earlier!  And once he's up, there is NO going back to bed.  Since he's not one to just play on his own and let us sleep, that means that we are also early risers.  We aren't making him stay asleep...he's just not supposed to come out of his room until Wakey Wakey turns green.  (unless, of course, it's to go to the bathroom!)

The best part is that Caleb LOVES it!  The day after his birthday, he came into our room at the very acceptable hour of 7 a.m. to announce that Wakey Wakey was green.  Maybe we should make it a little later every day...not that we will ever sleep in again!  :)

So if you also have an early riser in your family who needs a little extra incentive to stay in bed, try out the Okay to Wake Alarm Clock! 

**Nope, no money for this post.  I just figured that it might help out someone who is lacking a little sleep.

Saturday, January 15, 2011

Stream of Consciousness

Oh, come on--you know you love it! 

So, I'm really concerned about this weather we're supposed to be having on Monday night into Tuesday.  The words "wintery mix" do not belong anywhere near January 18th, because I'm not keen on anything interfering with our taking Abby home.  So I'm just praying that it won't.  And that the ventilator won't get wet on our very first trip outside with it ever.  The last thing we need is a shorted-out ventilator on our ride home.  No thank you!  I have a list of questions for Monday's meeting that I need to have answered.  They vary, but all are important. There is a Ravens party here for the game today, but I'm not going...I am not a football fan and I don't really feel like pizza.  I'm going to go scavenge for some food in a little while.  Today is my nephew Owen's 8th birthday and he does love football...a lot!  He's a Redskins fan though, so I don't think the Ravens game is going to interest him too much either.  Happy birthday, OTB!  I had my first circuit (vent tubing) issue today and I troubleshooted correctly!  A little plug had come unhooked, which broke the circuit and stopped giving Abby the support she needed, and the machine didn't even alarm!  Not cool.  I heard the noise of the vent (it is hard to explain, but it sounds different) and knew there was a leak, but I had to look a while before I found the culprit.  Yay for successful troubleshooting.  Matt is gone this weekend on an event but will be coming back Sunday night so that he can go to our discharge meeting on Monday.  I just hope that the weather doesn't mess up any plans.  It sounds like it won't be starting until after midnight into early Tuesday morning, so our discharge meeting shouldn't be affected.  Let's just pray that our drive home won't be either. We're going to be nervous enough as it is without treacherous weather conditions on top of it!  Every now and then when I think about what we are about to do, I get really panicky and start hyperventilating.  Then I remind myself that God kept Abby with us for a reason and that He has awesome plans for her, and I start to relax.  I can do all things through Christ who strengthens me! 

The Last Night

Last night was [hopefully] Caleb's last night staying at least for a while!  I have a feeling we'll be frequent flyers around here, seeing as a lot of her surgeries will be at JH.  I'm thinking the one near CHOP will also be well-known by us...

Anyway, I was talking with Caleb about how he wouldn't be staying here anymore.  For a while, I was a bit concerned that he wouldn't want to go home.  I mean, let's face it:  this place is any kid's dream!!  Games, video gaming systems, crafts, food, treats, toys, Ronald McDonald visits...our house can't compete with that!

To my surprise, Caleb said, "Ya know, the Ronald McDonald House is very nice, but it's not home.  I'm ready to just go home and be a family."  Doesn't that sound so mature?!  I know he's heard that from us, but it was pretty impressive for him to say it himself.

Then, at dinner--and totally unprompted--Caleb told me that he wanted to serve dinner here after we go home so that he could help other families.  Isn't that awesome?!?  It made me smile to see my boy looking outside of himself.  The director happened to be nearby, so I had Caleb tell her what he had just told me and she was thrilled.  Of course, Matt and I have already been trying to think of ways to help out.  This may be a little difficult at first with Abby, but I think that we can make it happen.  We may just bring her (and all of her gear) right on up here, along with someone to keep an eye on her while we're making dinner! We may do some activity hours as well...we'll just have to see! If anyone is interested in joining the team we'll be putting together, let us know!  :) 

It's kind of sad to say goodbye to RMH.  We have come to love the staff and everything this house stands for:  love, compassion, understanding, peace, gratitude, will always have a very special place in our hearts and we will definitely be looking for ways to give back.

But then, when I start to get a little misty-eyed about leaving, I think of that gorgeous girl that I can NOT WAIT to get home, and it's all I can do not to pack up the car right now and take her with me.  :)

The Joys of a 4 Year Old

We had a small party for Caleb on Saturday for his birthday.  Because the pool only allows 20 people (not swimmers, people!) to come to the party, we were pretty limited to just a couple of friends and immediate family.  But, it worked out because it made for a low-key, fairly low-stress party during a very stressful time.  There was no way I was going to cancel because Caleb has been through way too much to lose out on a party. 

So, Captain Caleb had a pirate party at the indoor pool!  We had an amazing treasure chest cake made by the talented Sammi Magee.  She's a high school senior planning to go to culinary school, so let me know if you are interested in having her do a cake for your next shindig! 

caleb with cake

The kids batted at a treasure chest pinata for a while before we determined that it was too well-made and "helped" a bit.  They enjoyed the treasures inside and filled up their treasure chests with toys and candy.

Caleb got some great presents.  Some favorites were his Woody toy to match the Buzz Lightyear he got for Christmas, a horse trailer with lots of horses to go inside, superhero underwear (with BATMAN!!!!), and Thomas pajamas!

After opening presents, we all headed out to the pool!  They had a great time splashing around in the kid's area. 

group photo

caleb face in water

It was a fun, easy party that didn't make a mess in my house!!  :)

Friday, January 14, 2011

The Last Hurdles

We cleared our last two hurdles before discharge today...barring any unforseen circumstances, we are all ready to go home!!!

Hurdle #1:  Car seat test

Abby did her car seat test today and passed with flying colors. Not only did she avoid desating or bradying for the two hour time span, but she actually slept soundly through the entire thing quite peacefully.  She was actually kind of annoyed when I took her out.  :)

Hurdle #2:  Nursing care

I interviewed two more nurses today and liked both of them, so we have all of the nursing care we need!  Wahoooooooooo!  That is a huge burden lifted off of my shoulders!  We will still do a few more interviews next week to find a few substitute nurses, but we have what we need in order to go home. 

We've been working hard at packing up RMH and sending home a little at a time, so hopefully the final pack-up won't be a problem.  I have two big storage boxes that I pack up, empty at home, and bring back to repack.  It's been working out well.  I'll take home the last load on Sunday and then we'll just be left with the bare essentials. 

Everything is falling into place quite nicely, and I'm going to pray that it will continue that way!


abby red dress

abby red dress closer up

Thursday, January 13, 2011


He was on a roll today!

(While looking at a train at the B & O Railroad Museum):  "This baby has a big, big smokestack!"

(In the middle of a tantrum):  "Now that I'm four, I can do whatever I want!"

(After picking out The Incredibles to watch):  "I live right next door to the Incredibles.  I can go over there whenever I want."

(Introducing himself to a RMH board member):  "My name's Caleb, but my real name is Batman."

(Eating salad at dinner):  "Now can I have the cartoons?"  [translation--croutons]

Wednesday, January 12, 2011


Emotion of the Day:  Frustrated.

I'm frustrated that we haven't found our night nurses yet and that it doesn't look like they have too many people left to interview.  I'm frustrated that I even need nurses, because I should be able to do this on my own.  I'm frustrated with insurance and its importance in our lives, because it is the deciding factor in way too many areas of my life right now.  I'm frustrated at the amount of work it is taking to get my daughter home.

I'm so ready to go home!!!!!!!!!!!!!!!

(Yes, I'm aware that going home won't fix my problems.)

The Crazy Side

I have two sides--did you know that? 

They're the crazy side and the practical side.

And sometimes the crazy side sort of takes over. 

I'm going to share with you my biggest fear in regards to Abby, which is something I've been working through recently.  I ask you to pray for me as we face this head-on.

Because of the severity of Abby's condition, there is a lot to do regarding her medical care.  There are trach changes, stoma cleanings, suctioning, flushes, etc., all of the time.  Some of her care is directly related to her airway.  And there's no room for errors.

So my biggest fear is that I will make a mistake that could cost Abby her life.  And I won't be able to handle that.  The guilt will kill me.

I know, I know.  The practical side reminds me that I have worked hard at learning everything there is to know about Abby's care.  I'm a dedicated mother who pays attention to the details.  There will be nurses and Matt there to follow-up and help out.  I know all of this.  But the crazy side still freaks out about it every now and then.

Like I said, I would love for you to pray for me as I deal with this.  I never want to be comfortable with Abby's care because that's when you let your guard down.  A healthy fear is necessary when dealing with the airway!  But I do need to clear this hurdle.

I'm also recognizing my frustration and guilt with not being able to be Abby's sole caregiver.  Sure, I worked when I had Caleb.  I relied on other people to watch him during the day and all, but when it came down to it, Matt and I were the ones who met his needs.  We fed him, gave him baths, rocked him when he cried, changed his diapers...I can't do that with Abby, and it turns out that that bothers me a little more than I thought it would.  Now that we really are going home (in less than a week!!!!), I really am feeling slightly guilty that I need other people to help me with I'm not strong enough or capable enough to do it on my own. 

That's the crazy side of me talking, because the practical side chastises, of course I need help!  Abby is a medically complex child with lots of machines, tubes, and wires!  She's not your average newborn!  It's just that the crazy side is pretty loud and obnoxious sometimes, and that's when the guilt creeps in.

There are times when I wonder if ya'll think that my crazy side has completely taken over and pushed the practical side out the window!  But then, I hear from people who thank me for being transparent and honest about my feelings and I realize that you guys are okay with my roller coaster of emotions.  I pray that you will never be able to relate to them! 

Thank you for joining us on this journey.  I get emotional thinking about Tuesday and the absolute JOYwe will feel when we drive away with our daughter....and then I start hyperventilating.  :)

Tuesday, January 11, 2011


That is my life right now. 

And it will probably describe my life for the next 50 years as well.

Our delivery came yesterday, and I have to admit that it wasn't quite as many boxes as I'd thought.  That was a pleasant surprise!  I did have a few shocks though:  the base for our in-house oxygen tank is HUMONGOUS and the entire thing is quite an eyesore.  I did my best to hide it behind the chair in the living room, but it's still ugly.  Thankfully, it's okay to be back there because Abby doesn't use oxygen on a regular basis. It would only be in case of an emergency and it is still very accessible from her spot. 

Another shock was how looooooooong the suction catheter packaging is.  We get three boxes a month (300 catheters total), and one box of 100 filled an entire drawer.  Those suckers are 2 feet long!  The worst part is that the actual catheter is about 1/2 the size, so I have no idea why the packaging is so big.  I only kept one box in the house and the other two are in the garage.

Our storage space is looking pretty good.  We have room to grow, and I'm not anxious about filling up the empty spaces because I know they'll naturally fill on their own too soon!  I did a lot of labeling yesterday with my new label maker (ooooooh, ahhhhhh!) and it should be really easy for the nurses and us to be able to find whatever we need.

I filled her bedside cart with all of the essentials so that everything we should need is within arm's reach.  The stuff in the cabinet is to refill with or things we won't need on a regular basis.  I worked hard to make sure that everything was accessible and moved several things around quite a few times before I was happy.

There was also more training to be done yesterday, and I learned about the suction machine, pulse oximeter, apnea moniter, oxygen tanks, and feeding pump.  Matt had to go to work, so I spent the evening teaching him....AND had a slight meltdown when he asked if a piece of the suction machine was disposable and I didn't know the answer.  There is SO much to learn and I'm SO afraid I'm going to make a mistake! 

While I didn't plan on sleeping at home two nights in a row, I realized that it was kind of necessary in order to get done what needed to be done.  In addition to getting all of the supplies organized and teaching Matt, we also put together the new Pack-and-Play that Abby will be sleeping in. We had a cheap one, but wanted a really nice one that would support her better since she'll be sleeping in it all of the time.  We'll bring the crib down from her bedroom (AKA, the storage room) eventually, but this will be fine for a good while.

And now, it's off to the hospital.  I will be taking care of Abby for 6 hours straight without any help from the nurses--unless necessary--to prove my competency.  Matt will be doing his on Thursday.  I'm really nervous about it, but I'm not sure why...I'm going to be doing it 24 hours a day really soon!!

ONE WEEK!!!!!!!!!!!!!!

Emotion of the Day:  Overwhelmed.  I am overwhelmed with the amount of stuff we have to take with us wherever we go.  I am overwhelmed at the amount of knowledge my brain is trying to process and retain.  I am overwhelmed with the insurance paperwork I do each day.  But, I am also overwhelmed with the love and support we have felt through this whole ordeal.  We'll get step at a time!

Monday, January 10, 2011

Some New Pictures

While I'm busy unpacking boxes and organizing Abby's space, enjoy a few pictures of my pretty girl!

abby with puppy

abby arm down closer

abby in therachair
abby cuddled up closer

abby cuddled up

abby close up

Sunday, January 9, 2011

The Most Beautiful Sound in the World

Join me now in a collective awwwwwwwwww!

Happy Birthday, Caleb!

At 11:31 p.m. four years ago, life as Matt and I knew it ceased to exist.  After 2 hours and 40 minutes of pushing, Caleb entered our world and we've never been the same!

This guy is one of the chattiest, funniest four year olds I know!  He loves to play Batman...and sometimes I think he really thinks he is Batman!  Most kids have an imaginary friend.  Not Caleb!  He has an imaginary group of girls that are high-school aged.  They get him in all kinds of trouble, but we're not sure how to tell him that they aren't a good influence on him!

Caleb loves nature, animals, and exploring.  He will often take his explorer bag with him on walks, using his bird caller to talk to the birds and looking in the sky with his binoculars.  He has a large rock collection under a bush near our front steps and takes pride in finding interesting things on his walks.

A baseball fan, Caleb frustrates Matt to know end with his loyalty to the Orioles instead of the Nationals.  Caleb's buddy Ms. Darlene calls him her Orioles Boy, and he oftens gets in arguments with Daddy over which team is better.  They can agree on one thing though:  BOOOO YANKEES!

He's wanted to be a big brother for a long time and yelled, "Thank you Momma, thank you!!" when we told him that his wish came true.  He adores Abby and loves to make her open her eyes and smile.  So far, Caleb is the only one who can get her to open her eyes just by talking to her.  He loves her unconditionally, and I think the feeling is mutual!

So happy birthday, Caleb-Boy!  This has been a crazy year for you and we've been so impressed by your resilience and patience during the roller coaster.  We can't wait to be all together again!  Love you!
caleb scooter

Friday, January 7, 2011

Getting Updates

Remember that if you would like to receive email updates of blog posts, all you need to do is send me an email at  I will add you to my blog group and you'll start getting the posts emailed to you.  Just "following" my blog on the right hand side of the screen won't get you the updates.

Also, I apologize now for the lack of posting that will be going on this weekend.  Today, we have meetings and more nursing interviews.  Tomorrow is Caleb's birthday party, Sunday is Caleb's actual birthday, and Monday my supply company will be bringing our first delivery.  I'll be home for the better part of the weekend, in a land where there is no internet. 


Yes, I am remedying this as quickly as possible.  If we are never going to leave the house again, I need to have internet so that I can order the grape soda and crab chips.

I have tons of pictures that need to be loaded, edited, and posted, but no time to do it.  I promise to take lots of pictures of Caleb's party and our supplies (I've heard it's boxes upon boxes of stuff!), but I can't promise that I will be posting more pictures in a timely manner.  There's a lot that is taking precedence right, pretty much anything that is going to get my girl home!

Thursday, January 6, 2011

I've Never Been So Excited to Hear a Baby Cry

Tonight, Abby made her first noises on the Passy-Muir Valve (her speaking valve).  Until now, she's just kind of stared at us in a panic because it feels (apparently) really different and it's harder for her to breathe with it.  That's why we only do it for short amounts of time to build up her tolerance.

This time, though, Abby was mad!  She was tired of people messing with her and was not happy about the PMV.  Of course, the first thought that entered my head was Good!  Now I'll be able to hear her cry!  Sadistic?  Perhaps...

And yes, for all of you assuming I did anyway, I did cry.

Unless you have been in this situation, you really can't understand how difficult it is not to hear your baby make noise.  You know what they should do, and it's just one more thing to add to the laundry list of What Abby Won't Do.  While most people wish their kids wouldn't cry so often, I would absolutely love to hear my girl cry.

And tonight, I did! 


We are with Maxim Healthcare, and so far we've been pleased with the agency.  I really like the person in charge of our case there.  She gets things done, and that makes me happy. 

Yesterday, we had our first two nursing interviews.  We have four more scheduled over the next week.  I asked them thirty-two a few questions and gave them a list of our expectations.  One was 10 minutes early and one was 25 minutes late.  One has already been flagged as a nurse we definitely want...and one will not be a good fit for our family.  'Nuff said. 

The question of the hour is how much nursing we'll actually get.  Well, we probably won't know until the day before discharge.  The uncertainty of this drives the planner in me absolutely bonkers I am handling the uncertainty quite well!  All I know is that we will go home with 24 hours of nursing care for the first couple of days...after that, it's all up in the air. 

You hear that?  That's God chuckling at the planner being forced to be flexible. 



I'm currently reading Mary Beth Chapman's book Choosing to See and have been able to relate to her on so many levels.  It's definitely worth the read!  It's all about the ups and downs of her life and how the death of her daughter Maria has affected her.  Like her, I'm a planner.  Like her, I wanted the simple things in life...job security with predictable hours and a quiet, normal life.  HA!  I think I gave up on the predictable hours part shortly after we were married and Matt had to cancel our Valentine's Day plans because a teenaged crisis came up.  There's no such thing as predictable hours when you're a youth pastor.  As for the second half of my simple dreams...we used to have a pretty normal life, but God kind of blew that one out of the water too.  I'm all about creating the new normal.  I jokingly--I think--say that we are never going anywhere again, but I know that we will learn how to do all sorts of things with our high-maintenance girl!

Emotion of the day:  Thrilled!  I'm thrilled to be setting up Abby's room and interviewing nurses, because I never thought this day would come.  Caleb is thrilled to have his family all back together and settle into a routine again.  Matt and I are thrilled to be able to finally bring our baby home after nearly three long months of just being visitors.  I am thrilled that Abby beat the odds and showed the doubters what she's made of.  That girl is a fighter!!!

Tuesday, January 4, 2011


I took a CPR class with a group of people who were less than serious about learning it.  As I was watching the others practice on the doll one by one, I came to the realization that I could very well have to do CPR on my child. 

And then I started crying.

I did manage to keep it together so that no one noticed--hopefully--but CPR is one of those things you learn but never think you'll actually use.  Or, if you do, it's on a stranger in the street or as a lifeguard at the pool.

Not on your own child.

So I went last for my demonstration so that I could be the only one there (you could leave after you demonstrated on the doll) and asked lots of questions.  I really wanted to make sure that I understood this.  Sure, I was certified back in the day at Wabanna, but that was a long time ago.

And this is my child.

There are also some things you need to do differently with a baby that has a trach, so it was good to have some one-on-one time with that. 

Comfortable?  No.  Could I do it in an emergency?  Yes.

Emotion of the day:  Nervous.  I'm definitely nervous that I won't remember how to do something or what to do in a certain situation.  I'm nervous that I will be considered the "expert" in Abby's care and expected to educate and train her nurses.  I'm still nervous about trach changes and the vent, but I have two more weeks to become more comfortable with those.  Mostly, if I am being totally honest, I'm nervous that an emergency will occur and I won't know what to do.  And I can't handle that.  But...I love my girl.  So I will do this!

Awesome Day!

Two fabulous things happened today.  I must share!!

First, and absolutely the most important:

We have a home date!!!!
Now, I know that this is subject to change and I shouldn't get too excited about it...but it is incredibly encouraging to me to actually have a date.  It's no longer "Mid January."  It's now January 18th!!!

There's a lot that has to happen between now and then, but we're getting there!!  The next two weeks (TWO WEEKS!!!!) will be a whirlwind.  I apologize now if my posts become a little less frequent.

Also, Abby got to test out her new speaking valve today!  That was the exciting happening I alluded to yesterday.  It's kind of difficult because she has to work a whole lot harder with it, so we're starting with very short trials.  However, Abby's 45 seconds pleasantly surprised the speech-language pathologist who was a bit skeptical of her ability to use it at all given her weak lungs.  She commented many times on how well she did.

Yes, I know 45 seconds is not very long at all.  But for a tiny baby with chronic lung disease and a whole mess of other issues, it's a century!  Baby steps, baby steps.

The sad part is that the girl didn't make a darn sound the entire time!  We did 3 trials throughout the day (each one about 45 seconds) and she looked at me like she had no idea what to do with herself.  We'll definitely have a conversation before tomorrow's trials so that she's aware of her job in all of this.  I kept telling her that now was her chance to talk!

Funny story about that...when I said that, the SLP looked at me and said quite cautiously, well, Abby probably won't make much more than a coo or a gurgle at this point.  She won't really be talking yet.

Ha!  Yes, I realize that.  Thanks for the reminder though. 

Ohhhhhhhhh...AND I found out that there are a couple of nurses interested in working for us!  We'll be interviewing them over the next week and hopefully finding a few good matches.

Fabulous news all around, doncha think?

Prayer Requests

Thank you, thank you, thank you to all of you who faithfully pray for us.  It is so wonderful to know that so many people love and support us.  As our home date nears, we have some specific prayer requests for you.

*  Abby will continue to be stable enough to go home.

*  Our nursing agency will find qualified, capable nurses that are willing to travel to our area.  This has been a real problem.  So many times, nurses say they travel to our county only find out that we live at the bottom (another 40 minutes) and say no.  I'll be so frustrated if the reason Abby has to stay in the hospital longer is because they can't get the necessary staffing. 

*  The transition home will be smooth for all of us and that we will be able to thoroughly enjoy having Abby home with us.

*  We will all adjust well to strangers being in our home and that we will all have a common goal of providing Abby with top-notch care.  God apparently decided to teach me a little about flexibility and depending on others.  This is SO not me!!!

* Abby will have all of the necessary equipment and supplies--specifically, that the generator will be installed.

*  We will be able to be at peace with whatever career decisions are made.  This has been heavy on our minds recently.

Monday, January 3, 2011

In No Particular Order...

Sorry for the lack of posting the last few days.  I've been a bit busy working on getting the house (you know, that place where I used to live?) ready for Abby and I worked today (you know, at that school I used to go to every day?)

Abby now weighs exactly 6 lbs, 15.8 oz.  She had made it over the 7 lb mark before the nurse realized that she didn't have a new diaper on and had to subtract that weight.  Darn...we almost tricked her!

I made my first trach change mess-up tonight when I forgot to put the opterator in the guide it (What?  You don't know what an opterator is????  Well, it's the plastic hook-looking-thing that goes into the trach tube to make the trach stiff and easier to insert.  Duh.) :)  It ended up being fine, but the trach could have kinked and made a big mess.  I'm glad I made the mistake at the hospital and not at home, and I'm very glad that it didn't cause a big problem!

I'm so excited to have been in touch with a fellow CCMS mom!!  Her beautiful daughter is 6 months old and she's a bow-wearer.  I like her already!  This is such an isolating experience.  I suppose Miss Independent (ahem, that's me) is really being put to the test now!

The house is looking pretty good.  We have some storage for medical supplies and a bedside cabinet now, so we're feeling better about the space.  Caleb is satisfied that he still has a play area and his beloved Hank (a ride-on dinosaur that is taller than him) is still living in the house...just in the basement!

We will get our first supplies delivery on Wednesday.  They will also be doing more vent training then, and I think we'll be taking our test the next time they come.

Tomorrow will be a big day for Abby...something very exciting!  Yep, I'm going to make you wait.  I'm suspenseful like that.  Just call me Ryan Seacrest.  Never fear, I will blog all about it tomorrow night.  (No, she's not going home.  I wish!)  Hopefully, all will go well.

I seriously love my girl.  She was so darn cute tonight!  Wide awake, she just stared at me while I talked to her as if she was just taking it all in.  I do love those dark eyes of hers.  I see so much wisdom and truth in those eyes.  She has gone through things in the last 2 1/2 months that most people don't deal with in their lifetime, and it shows.  She's a special kid.  *tear*

I'm going to end one of my posts each day with my "Feeling of the Day."  This will be a short segment describing my current emotion, since emotions are running high and wild around here these days.  One day, I'm thrilled, the next day, I'm terrified.  And so goes the special-needs rollercoaster.

Feeling of the Day:  anxious. 

I'm anxious for Abby to come home, but anxious about finding qualified nurses to care for her.  I'm anxious about the vent training and anxious to start our new normal. 

Saturday, January 1, 2011

Weight Update

No, not my weight.  We won't be talking about that.  The scale and I are not friends right now.

We're talking about Abby's weight...and it's fabulous!

Drumroll, please...........................................................................................................................................................................................................................................................

Abby now weighs 6 lb, 13 oz!  She is very nearly SEVEN pounds, which is just huge to me compared to where she was.  At her lowest, Abby was 3 lb, 9 oz.  She's almost doubled that weight now!!

Yes, I know you're just as excited as me.  What better news on the first day of 2011!!  :)