Life as a Leach

Tomorrow will be the start of a new chapter in Abby's life.  I am absolutely thrilled with the teacher and one-on-one she will have.  It is the perfect situation and we are so thankful for these wonderful ladies! The magnitude of this milestone is not lost on me.  For a little girl who was never supposed to get out of the NICU, she is loving life and proving all of the doctors wrong. So if you see me crying tomorrow, know that they are tears of joy, thankfulness, and unbelief that we made it this far.

Inspired by this article and photos, I decided to do a little photo shoot with Abby. Abby:  Then and Now! She got a little silly after a while :) We keep this picture on our mantle to remind us of how far she has come.  Although some days can be hard, we are so blessed with her health, spunk, and zest for life!

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...

Have you ever felt awkward and inadequate when trying to give comfort to a person facing a major medical illness?  I used to stumble over my words or just give a feeble, "I'm sorry."  I may have even been guilty of saying, "This is all part of God's plan" a time or two. Now being the mother of a daughter with chronic health issues, and having been the recipient of lots of well-meaning cliches, I understand that people just want to show their support.  They may not quite know how, but they want to let you know that they love you and are pulling for you.  I appreciate that! I did want to share a few phrases that, in my opinion, are not very helpful when you are in the midst of a medical crisis.  (Note:  if you're reading this and think you might have said one of these to me, please know that I was not offended and appreciated your support!!)   :)  This is just something that I have talked with other special needs parents about and read about...

Tomorrow is Abby's first day of preschool.  I never, in a million years, would have been believed two years ago that she would be going to preschool on her own, trach-free, without an assistant!  God has amazed me time and time again with this girl. We are supposed to send in a baby picture tomorrow.  Ours aren't exactly the norm, but nothing about Abby is!  I've been taking a little walk down memory lane tonight and looking at some early photos of my sweet girl! This was the very first time I ever held her.  I will never forget that moment. This is probably my favorite early picture of her.  Look at the determination in those dark eyes of hers.  She was a fighter from the start! What a long way she has come!  I will definitely post some first day of school pictures, so stay tuned!

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!

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...

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...

I'm guest posting this week on a friend's blog, but figured that some of you newer blog friends might like to read up on Abby's story too.   Cerebrocostomandibular Syndrome...ever heard of it?!  Don't worry, neither had we until October 22, 2010.  This ugly syndrome tried its best to take our daughter from us, but we serve a God who is SO much bigger than a syndrome no one has ever heard of!  Here is our story... Abby was diagnosed prenatally with Pierre Robin's Sequence, which is a small jaw and airway, as well as a cleft soft palate.  We were concerned, but confident that we could handle the potential feeding and speech issues that would come with it.  She was born at 34 weeks due to my fluid levels being too high. Shortly after her birth, a routine preemie xray showed that about half of her ribs were in multiple pieces, her sternum was not in tact, and her spine had a curvature and a hump.   Later that morning, we met with the geneticist who ga...

Today was an emotional day, and I have been a bit "leaky."  But it's all happy leaking! Our speech therapist saw Abby for the first time in a month, and she was very excited about Abby's progress.  When I asked what we needed to focus on now, she said nothing.   She said Abby is doing just what a child her age should be doing, and she is a typically developing talker! So what do you do when a professional speech therapist with whom you've been working closely for the last 18 months   tells you that she no longer has any concerns about your child???? I cried.   Very happy tears!!! Then I asked in a worried tone, "You're not going to dismiss her, are you???"  The answer is NO.  Yay!  Abby has a diagnosed medical condition that puts her at risk for delays, so she will remain in early intervention until age 3.  We'll have to see what the IEP process holds for us after that.  For now, I'm very happy to stay under the very knowledgea...

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...

My sister gave me a bracelet right after Abby was born to remind me "For with God, all things are possible."  I have worn it ever since as a constant reminder not to lose faith.  God can  perform miracles! This was taken in the NICU in November, 2010 when Abby was just two weeks old. This was taken in May, 2012 when Abby was 18 months old! See everybody?  For with God, all things are possible!

Those first few terrifying weeks of Abby's life, the doctors told us an awful lot of information.  They told us that Abby's chances of getting out of the NICU were very slim.  They gave us lots of statistics that showed us the odds were stacked against her. They pointed out every little physical imperfection on her body, from her ears, to the bridge of her nose, to her fingers.  They discussed life expectancy, pediatric hospice, and DNR orders.  They told us that she would never sit up, much less walk, but offered assistive technology to make our day-to-day easier.  They were quick to set our expectations straight by informing us that she wouldn't be much more than a vegetable, if she lived . But there was a whole lot the doctors didn't say. They didn't say that Abby is so much more than a statistic.  They didn't describe the look of adoration that would glisten in Abby's eyes as she signed "I love you."  They forgot to menti...

Next Tuesday, I will be speaking at a UMMC conference on how to help families of children with life-limiting illnesses.  This conference is for medical professionals at UMMC, as well as students at UMB.  It's an all-day conference whose entire focus is pallative care for critically-ill children, so I'm excited to hear what some of the speakers have to say.  I love that UMMC finds pallative care important enough to devote an entire conference to it.  Unfortunately, pallative care often gets pushed to the side. I will be part of a parent panel for a session entitled, “When It’s Your Child: Parent Reflections On Life-Limiting Pediatric Illness.”    There will be three of us on the panel representing a variety of medical needs.  Will you please pray for me over the next week?  I am so excited about this opportunity, but a little nervous about the number of people that will be in the audience.  I'm not a public speaker (that may sound st...

A year ago, Abby had her first "photo shoot" in the NICU.  Many of you may remember seeing the pictures on our blog and in her 1 year slideshow.  I want to tell you a little more about the organization that took those pictures.  When Abby's future was uncertain and it did not appear that she would be with us for much longer, our wonderful social worker brought up the subject of bringing in a photographer from the group Now I Lay Me Down to Sleep.   I had heard about this organization from several friends who had lost their babies at birth and they had said how wonderful and caring the photographers were.  But at that point, I felt like saying yes to NILMDTS was giving up on Abby.  I vehemently said NO and wouldn't discuss it further.  The next day, as things continued to look grim, Matt and I talked about it again and decided that we would really like to have pictures of all of us together.  I wasn't sure how Caleb would be if we got them take...