Life as a Leach

Caleb has been working really hard on getting his training wheels off of his bike, but our driveway and street are not the best place to practice because of the hills.  We took him to his school last Sunday evening to ride around in the parking lot, which was the perfect place to practice! When we got there, there was another family with a little girl playing on the playground.  At second glance, I realized that this is the family who we saw and spoke with the very first time we ever took Abby to a playground back in May 2011...trach, ventilator, tubes, and all! She was in her mega-stroller and I think I only took her out for a few minutes to sit on the swing with me! But it felt so good to be doing something so normal, even if nothing about the situation was very normal. The family was very gracious when we met them, and they asked a lot of questions about Abby.  We, of course, didn't mind at all.  They left before us and wished us well. Fast for...

Wow, I haven't blogged in a week.  It's weird to not do something when you are so used to doing it every day.  For a long time, blogging was therapeutic for me.  But I never want blogging to become a chore or get in the way of my role as a teacher, wife, and mom. So now that our lives are changing once again and we are about to be 100% completely in charge of Abby's care for the first time ever (woo hoo!!), I won't be staying up until 11:00 waiting for the nurse with several hours of blogging time on my hands.  That means that blogging might be a little less frequent, but that's a good thing!  :)  We'll be spending more time doing "normal" family things this fall, like going to pumpkin patches, celebrating birthdays, and visiting museums.  Oh yeah, and Abby will be going to Baltimore twice a week for the entire month of October.  Gotta love those annual appointments!  Oy. What's been going on during my blogging hiatus?  Wel...

After a week of being trach free, here are some new things about Abby: *  She took her first bath with water in the tub on Wednesday.  The girl LOVED it!  She splashed and laughed the entire time, giving me quite a mess to clean up!  It was so worth it to see her so happy.  It's exciting that she can do that now that the hole is closed up! *  Abby sings  all of the time now!  She never did any singing when she had her trach, but she started singing just a few hours after getting it out.  That evening, I asked if she wanted to sing a song and she la-la-ed something very close to Twinkle, Twinkle, Little Star!  She now la-las all of the time, and I LOVE IT.  LOVE it.  This was one of the things I was most looking forward to with her decannulation.  It is so sweet! *  We went to the ophthalmologist today and he confirmed that she needs glasses.  Her eye has started drifting and she's nearsighted. ...

I finally figured out how to get the videos off of my phone and onto my blog.  I'm not sure I could ever do it again!  Moral of the story:  take important videos with your camera!!! Abby is so excited to be trach free! Caleb's first glimpse at Abby trachless.  Get your tissues.  :)

This is the last picture I have of Abby sleeping by herself without a trach. This is the first picture of Abby sleeping after having her trach removed! How far God has brought us!  She is so beautiful!

Caleb's first glimpse of Abby without a trach!  Get your tissues.  :)

Two videos from the big day! Here is the actual decannulation.  It's so anticlimatic!  A lot of people couldn't believe that this was it...it's so simple, yet so HUGE! Abby got her voice back really quickly and spent the rest of the day saying, "No more trach!"

As luck would have it, Abby seems to have gotten an upper respiratory infection that didn't show itself until yesterday evening.  She started out with lots of drainage from her nose, but by bedtime, she was absolutely miserable.  She tossed and turned most of the night, sleeping only for short amounts of time and crying whenever she was awake.  Thankfully, her oxygen levels stayed perfect, so there was no reason to make any calls last night. Abby seemed even more miserable this morning and had a decent fever. I called our amazing pediatrician, who took the time on his day off to meet us at the office so that he could see her.  He really goes above and beyond for us!  After checking Abs out, he felt like she probably had a virus that lots of kids have been getting recently.  But since she just had her trach removed, he went ahead and put her on an antibiotic to kill whatever might be floating around in there.  Thank you, Dr. S!  You are so awesom...

October 27, 2010 was the last day that my daughter breathed on her own. If we want to get technical, Abby has never breathed unassisted.  She had a trumpet clearing her airway put it immediately after birth and was placed under an oxygen tent until she had her emergency tracheostomy at five days old on October 27th. To relive that difficult day a little...Abby had been really struggling to breathe, and the day before had given us enough of a scare that the emergency response team had been called in.  I felt completely helpless watching the team work on my little girl.  Saturation levels were down in the 30s (out of 100%) and we were constantly repositioning and stimulating Abby to try to improve her breathing.  It was becoming more and more evident that the trumpet wasn't working. I had gone to the rest room and was then heading downstairs to grab some lunch with Matt and bring it back up.  I popped my head back in Abby's room to let the nurse know we woul...

If all goes well, Abby will be trach free today!!  Here's a picture of what she might look like without a trach. (She does have a trach here, but it sure doesn't look like it!) I will post a trach free picture when I can, but it is hard to do sometimes at the hospital.  I'll definitely be uploading onto Facebook though! Happy Decann Day, Abby Joy!  We are SO proud of you! And just to put it all in perspective... Miracles are a retelling in small letters of the very same story which is written across the whole world in letters too large for some of us to see. C. S. Lewis

I cannot believe that Abby will be trachless in two days.  Amazing. Really, our adventure starts tomorrow evening when we go to RMH.  We'll stay there Wednesday night and then head over to JHH at 6:45 a.m.  See why we are staying at RMH?!  Her surgery is scheduled for 8:45, but I wouldn't be surprised if they took her early.  JHH has been really great about being on time or early since being in their new building.  They have operating rooms for each of the specialties, which REALLY cuts down on the emergency bumps!  Love it! While under anesthesia, the ENT will check out Abby's airway one last time.  It's routine and we are not expecting anything strange, but he just wants one more peek.  He will also clean out her ears again, since she'll be under anyway.  Doctors can't see her right ear drum now that the tube isn't there (Abby's ear canals are special...), so our ENT wants to get a good look at it to make sure there isn't fluid bui...

I've never seen Abby's full head and neck. Ever. She was taken from us immediately after her birth to the room across the hall, where they attempted to intubate her before putting a trumpet into her nose.  My first glimpse of my daughter was so filled with tape and neon orange plastic that I honestly had no image of her in my mind.  In fact, when I went down to the NICU for the first time, I'm ashamed to say that I didn't know which tiny baby in the incubator was mine.   I peered from face to face, but none of them looked like mine. The nurse practitioner had to bring me to my baby. Imagine how that felt, to not know who your daughter was. After the trumpet came the trach.  I could finally see a little more of her face with some of the tape gone.  (She still had a feeding tube through her nose at this point, so there was some tape there.)  But there has always been something  there that is not really supposed to be there. So, while I can cert...

Our ENT called this morning, and Abby is officially going to get her trach out!!!!!!!!!  What's even better is that she is scheduled for SEPTEMBER 6TH...just 2 1/2 weeks away!!!!!!!!! I quickly called Matt with the news, and we shared some tears and blubbering.  Then I listened to "Our God" three or four times in a row and blubbered a little more.  Tonight, we both blubbered through singing "Our God" at Caleb and Abby's bedtime. I know we say it all of the time, but we are so thankful for all of the miracles that God has performed in Abby's life.  What an amazing story we have to tell, and what an easy  way to share about Christ! 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! And if our God is for us, then who could ever stop us?

Last night's sleep study went okay.  I didn't leave there fully confident that Abby did great, like I did the last time.  She had a few desats where her oxygen levels dropped a bit, and she was working pretty hard to breathe toward the end of the night.  But she made it through without having to stop the study, and the tech was quick to note that her oxygen level was at 100% even though her breathing was a bit labored.  That is a good sign. The other good news is that there was no sign of apnea, which hopefully means that she will not have to have the jaw surgery.  Our ENT told us that if she had apnea episodes, it would be because the airway was too small and she would need the surgery to open it up.  I'm hoping that no apnea = no surgery.   So now it's just waiting...again.  The doctor is supposed to call me with the official results and tell me what our next steps will be, but I wasn't given a timeline on that phone call.  I'm hop...

They're all good, too!!  :) Warning:  This is a VERY long post with no pictures.   Sorry :*( 1.  Abby went to ENT on Tuesday for a follow-up now that she has been off of the vent for a month.  He put a cap on her trach so that she would be forced to breathe out of her mouth and nose.  We're building up tolerance, but she does great with it and doesn't seem to notice any changes at all.  Right now, we're following guidelines to cap her 3x a day and increase by 15 minutes each day.  By the time we come back from vacation, Abby should be capped pretty much all day!!!  I will call while we're on vacation to schedule a sleep study.  If that looks grrrrrreat, our ENT will check her airway under anesthesia one more time, admit her to the PICU, then take the trach out!!!  She'll stay inpatient for a few days under observation, but for awesome reasons!  If the sleep study doesn't look so wonderful, then we will move forward with...

I'm a planner.  Have I mentioned that before? I like to have a plan.  So imagine my discomfort in not really having a plan for getting Abby's trach out.  To avoid false hopes, we would answer, "Ohhh, after she goes to school" if someone asked when she might be able to get it out.  It was just easier that way. Well, noooooooooow, we have a plan . And I. LOVE. IT. After Abby has been successfully off of the vent for a month, we'll start capping her trach.  This is when we put a little plug in it so that it's not being used at all and she has to do everything through her nose and mouth.  It's awfully nice to know you can just pull the plug out if she struggles though!  I have strategically scheduled her ENT appointment for almost exactly a month from today so that we don't waste any time! Once she caps successfully while she is awake (which depends on Abby, but our ENT thinks this will be a quick process), she will go for another sleep study whe...