Life as a Leach

Matt made a side-by-side comparison of the ribs.  I have many before-veptr X-ray pictures, but I can't find any right now!  I'll keep looking.   The difference in Abby's breathing is remarkable.  She is so calm and taking great breaths, where previously her breaths were very shallow and fast.  I commented to the resident how much better her breathing isOrthopedics resident came.  I commented on how much better her breathing was than previously post-op.  He said it was amazing to see the before/after in the or.  He could see the ribs trying to expand, but they just couldn't.  As soon as the veptr was in, the ribs and lungs fully expanded and the breathing dramatically improved. I told him he needs to video that sometime.  SO cool!!! Abby's life is nothing short of a miracle, and God has been with us every step of the way.  He has given Dr. Campbell such a wonderful gift and we are blessed to have him as Abby's surgeon.  Thank yo...

A friend posted this , and I casually clicked on the link because the photo that was there was of a baby in the NICU.  I figured I might be able to relate in some way and wanted to check it out. Oh my, the tears!  Could I relate?  Oh yes! If you don't have time to read the entire post, read this part below where she describes the thankfulness she has for her daughter and know that this is totally my heart.  What a beautiful expression of gratitude.  Thanksgiving is every day. I don’t need a calendar for Thanksgiving now , all orange and brown, marked by apple cider and falling leaves. You rolled over and it was Thanksgiving, hot summer sun beating down on the window. You spoke a single syllable and it was Thanksgiving, snow falling softly from the night sky. You took shaky steps toward us and it was Thanksgiving, blooms still in buds outside. I know that our story could have ended differently and I’m still counting the Thanksgivings with heartbeat...

Dear NICU doctors,      You probably don't remember me.  The last time you saw me, I was hooked up to a ventilator, had a trach, and was fed through a gastrostomy tube.  I was a mere five pounds when I was transferred to the rehab hospital, and I was only even allowed to wear clothes for just a few days before my departure.  I had lots of salt and pepper hair and huge brown eyes that seemed to stare right into your soul.  This picture might help you remember.      I'm Abby, and I'm a miracle.      I'd be willing to bet you don't remember some of the conversations you had with my parents.  After all, you have hundreds of tough conversations each year.  But they remember.  They remember how they were stopped in the hallway and callously asked what they wanted to do when I coded.  After getting over the initial shock of that question, they begged the doctor to do whatever he could to save my...

Remember last week how I said that when we first brought Abby home, I doubted whether I would be able to handle a true emergency?  Well, it didn't take long to face that concern head-on...just one week, as a matter of fact.  Today marks two years since we almost lost Abby. You can read all about what happened in this post .  Turns out, she had RSV.  I'm not going to retell the story, but I will say that the image of Abby lying there, blue, will stick with me forever.  I really thought I was losing my daughter in that moment, and I still tear up when I think about it. During our hospital stay, this situation, and in many other situations we've had with Abby, many well-meaning people quote the old saying that God won't give you anymore than you can handle.   I  used to say it too! But now, after having a front-row seat in Abby's life, I truly believe that God will give you the strength to handle anything that you face. There's a difference there....

Sorry for not posting while we were in the hospital.  Turns out, MW does have wifi (thanks Gila!), but it took a day for someone in IT to come approve my laptop, and when Abby went to sleep and I had time to post, I discovered that Blogger is not an "approved" site.  Scandalous! If we're Facebook friends, you already know most of the story.  Here's the condensed version.  :) We get there and it turns out that "they" (still not sure who "they" are) forgot to schedule the sleep study, which is the entire reason we are there.  She's on the waiting list, but we may have to wait until the following Monday to do the study...which means being in the hospital until Monday...which means exposing Abby to unnecessary germs.  Ugh.  Not too happy!  We found out Tuesday afternoon that she would have it that night, which was perfectly fine with me!  We actually ended up getting out a day early.  Woo hoo!  Abby did great the first night off the...

We got some amazing news yesterday. Abby saw her thoracic specialist, who said that her ribs are continuing to calcify and that he doesn't feel like any surgery at all is necessary! He doesn't need to see her again until she is 4 or 5, and he doesn't feel that we need to put any limitations on her activities...she could even play soccer if she wanted to! (I think we'd better work on the standing fi rst though!) :) To give you an idea of how much of a miracle this news is, below is the very first image we have of Abby's ribs.  This was taken about an hour after birth.  Here is another image that was taken about a few weeks later, but is a little better picture of her ribs. When we asked the nurse practitioner what the gaps meant for Abby's prognosis, and she gave us a helpless look and said she'd never seen anything like this.  She hung a "Fragile!  Do Not Touch!" sign over Abby's crib and everyone handled her with kid gloves.  ...

For several months now, we have had the pleasure of talking about our story with a young journalist.  She heard about it through a friend of ours she worked with and got our contact information.  "A" is in a journalism master's program and originally interviewed us for an article she wrote for a class.  Now, she is doing an internship at CNS  and called us for permission to write our story again...this time with a different focus.  After lots of emails and phone calls, the final article was sent "out on the wire" (that's newspaper-speak for ready for publication...aren't I fancy?!) and to our surprise, it was picked up by Fox news!  Here is the link: http://www.foxnews.com/health/2011/11/04/after-grim-diagnosis-parents-turn-to-internet-social-networks/ Our sole reason for agreeing to the article was that we would be able to share the miracles God has performed in Abby's life and point others to Christ.  We hope that if you have found the blog a...

Dr. S, the chief of orthopaedic surgery at JH, is a world-renowned spinal surgeon.  He is one of the best in the world and is very highly respected in the spinal world.  We knew he was who we wanted to see to find out more about Abby's spine. In Abby's initial spinal xrays, she had scoliosis and kyphosis (a curve and a hunchback).  We were looking at several spinal surgeries involving metal rods and spinal fusion.  We were bracing ourselves for the announcement of the first of several surgeries at today's appointment. So imagine our surprise when Dr. S said that she no longer has scoliosis and that her kyphosis is within the normal limits!!  NO spinal surgeries are needed!!  We don't even need to follow-up unless our pediatrician sees something concerning.  AMAZING. We were in shock...still are, I think!  I'm processing everything slowly because for five months we just assumed that metal rods were in our future.  After today,...