Life as a Leach

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 cra...

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!  :)

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 simple...so nondescript...and so what we have been yearning fo...

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! :)

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,...

Try to stay warm!

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

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 ...

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

...We're all loving being home!

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 a...

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!

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!

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!  Thank...

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 leaves...me!  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 issues...like 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...

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. *sigh* 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! 

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 lun...

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!!!

For Caleb's birthday, we gave him a gift that keeps on giving...an "Ok to Wake!" alarm clock!!  This little guy, whom he affectionately named Wakey Wakey, is a regular alarm clock, a naptimer, AND...you 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 ...

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 int...

Last night was [hopefully] Caleb's last night staying at RMH...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 af...

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!  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 pr...

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 ...

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]

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.)

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 ...

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 k...

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

Join me now in a collective awwwwwwwwww!

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 th...

Remember that if you would like to receive email updates of blog posts, all you need to do is send me an email at juliebleach@yahoo.com .  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.  *gasp* 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 essentials...like grape soda and crab chips. I have tons of pictures that need to be loaded, edited, and posted, but no time to do...

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, ...

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 tha...

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....

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 o...

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 apparent...

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 C...

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!!  :)