Skip to main content

2 Years Ago Today...

...we brought our Abby Joy home for the very first time at just shy of three months old.  What an emotional day that was!!

It started out frustrating because bad weather (that wasn't very bad at all!) was going to keep the nursing agency representative from being able to do our intake.  The hospital wouldn't let Abby go home without nursing care, so this would have made us stay at least another day.  Several phone calls from a very angry husband later, she agreed that she would "try" to get down there.  (The weather was fine!!  Kids didn't even go in late!!)

Once we realized that this was actually happening, it became surreal.  We hugged and cried tears of joy because we were finally doing something that most of the doctors didn't think would happen.  As we walked out of the hospital, I almost felt like we were stealing her and someone was going to take us down the moment we stepped out of the door!

Thankfulness overtook us as we pulled out of the parking lot with "Our God" blaring.  Absolute thankfulness.

I think the terror started to set in right about when we left the city limits.  We'd been trained extensively in her care and the equipment, but all of that kind of went out the window when the apnea monitor first beeped and I couldn't get it to stop!  What in the world have we done?!  Why did they let us leave the hospital?!

Along with the fear came the doubt.  I distinctly remember sitting on the floor trying to put away some of the mountain of medical supplies, just sobbing because I didn't think that I could do this.  It wasn't that I didn't want to--it was that I just doubted myself.  Would I be able to handle a true emergency?  (I'd find out just a week later that yes, I could!)  For quite sometime, I wouldn't even allow myself to be alone with her.  I always had to have someone else in the house with me in case something happened.

I don't think I slept at all that night.  Yes, we had nursing, but my many nursing interviews had already informed me that you can't necessarily trust them.  Just because they have credentials doesn't mean they are truly competent.  (We sure did learn that in our year and a half with home care!!!)

Do I still have frustrations?  Oh, of course!  Doctors don't return phone calls, our supply company sends the wrong items, appointments get canceled, etc.  It happens.

Is it still surreal?  Sometimes!  When I think back to all we have been through in the last two years, it certainly is.  Sometimes I think I'm just peeking in on someone else's life!

Am I still thankful?  Every single moment.  Even when Abby spits her food at me and I have to change my outfit for the third time that day.  This happens multiple times a day, or until I just get tired of changing and leave the stains there.  When I look at that girl and all that she has overcome, I am so thankful to my God who healed her, who protected her, and who gave her that spunkiness that I have come to know so well!

Am I still terrified?  I don't think that it's as terrifying anymore.  I still struggle with the fear of the unknown, but being trach-free also means that Abby is not nearly as susceptible to germs and illnesses.  The fear of infection was the worst because we knew that a common cold could kill her--and nearly did.  I am learning to not fear the worst every time she gets an illness, now that I've seen that she can handle it without being hospitalized.  Probably my biggest fear these days is when she will need to be intubated for the first time under anesthesia.  Because of her tiny airway, she can't be intubated like most people.  Abby has to have fiberoptic intubation, which only specially-trained anesthesiologists can do.  This will require some planning to coordinate the appropriate anesthesiologist, the surgeon performing the surgery, and our ENT, who wants to be there for the first surgery...just in case.  One of the pluses of a trach was knowing that she had a stable airway for surgery.  Needless to say, I'll be a nervous wreck the first time she goes under!

Do I still doubt myself?  I think I've become a lot more confident in myself since I've had Abby.  I have researched, studied, observed, and performed so many medical tasks that I feel like I can handle most situations.  I certainly don't know everything, but I know Abby.  Most of the doctors have come to respect my opinion and include me in their decisions because they know that I am knowledgeable.  A little doubt is healthy--overconfidence leads to mistakes.  But I think the crippling doubt that I had before that could have kept me from acting quickly is mostly gone.

Two years.  Two years since she's been home.  Two years since my daughter truly became my own.  SO thankful!!

Comments

Anonymous said…
I'm glad we could be there then and now to help you celebrate! Love you all! Amy
Mary Lou said…
Julie....
Sorry, I did not have time to comment on this Blog post yesterday. Oh, well. Here I am now!! ;)
Very good. Very, very, very good.... ;-D
God's Hand was definitely upon your little girl, that's for certain!! Plus, Abby is--like me--"hard to kill". For I, myself, was born with life-threatening birth defects, all three which required surgery. Have I ever mentioned that before? ;)
Abby is a fighter, with an iron will!! This will serve her well in the future to come. Trust me on that one!! ;-D
--Raelyn
Anonymous said…
you rock as abby's mom! (and i remember the cute dress she wore that day)- g

Popular posts from this blog

Cerebrocostomandibular Syndrome

If you happen to pick up the latest Reader's Digest, there is an article in there about Piper Breinholt , a four year old with CCMS.  If you've been around here a while, you'll remember wayyyyyy back when we first received Abby's diagnosis that I was able to speak to Piper's mom, Reagan.  The article is more about their story and not as much about the ins and outs of CCMS, but I think it's probably enough to get some people googling it and I'm hoping a few will end up here. Every once in a while, I give a blog post the title of Cerebrocostomandibular Syndrome so that it would show up in Google.  My ever-present hope is that people will stumble across my blog and 1) be encouraged by the hope we have in Christ, 2) feel a connection with someone in a similar situation as them, or 3) get excited over the miracles that have been performed in Abby's life!!  (a combination of all 3 is great too!)  :)   Notice that it's not to get famous and it never wi

Bath Time Photos!!

As promised, here are lots of photos of Abby's first bath. Caleb was supposed to be in bed, but the bathroom is right next to his room... "I'm not too sure about this..." Once she learned how to splash, she was all smiles! Her first good hair wash! Gotta protect the trach! She really liked getting water poured on her head.  It was cute! Smiley (and bubbly) for Daddy while he dried her off. All clean!!  (Note the Lysol wipes in that last picture.  They are NEVER far away!)

Imagination Movers Photo Recap

Seriously, The Imagination Movers were so much fun!  They played lots of their own music, with some classic rock mixed in for the adults.  There were also quite a few jokes and references to Baltimore, which was kind of fun.   The whole night centered around this robot named Rock-o-Matic, or "Rocko."   This is Mover Scott, and he wears Wobble Goggles that help him see new ideas.  Caleb and Abby have a pair of goggles too.  :) There are 4 main Movers that are part of the TV show, but they have 2 extra movers to play instruments and do back-up vocals in their live tour. Abby finished up her feed before the show started so that she would be free to dance! My dancing queen did NOT want to sit in my lap.  The row in front of us was empty, and that is where she stood almost the entire show--dancing the night away. My Imagination Movers  Caleb did his share of singing and dancing too.  He knows most of the words to the songs, so