Monday, September 7, 2009

blind sided...kicked in the stomach....hit in the face with a baseball bat....that's pretty much how we were feeling this time last year. it's an anniversary of sorts around here....this weekend last year is when we took our newborn Lilah in for a "cold".

i left G with Paul and took her to the pediatrician on call (providentially, the best in the practice and the genetic specialist). by the time we got there i was feeling very uneasy...knew she did not look right...felt like we might end up at the hospital. they suctioned her nose, concluded she had double ear infections, took her first chest xray and told us to head to Children's. looking back, i was 'shaky' at this point...feeling a little panicked that my 7 week-old was checking into the hospital for iv antibiotics for an 'ear infection'. had i known how bad it would get, i would have had a snack and taken a nap in preparation for what felt like awful nightmare that just kept snowballing and would not end.

they had a terrible, terrible time sticking Lilah... and i wasted a lot of tears way before it actually got bad. they started her on oxygen and told us she needed a repeat chest xray to rule out pneumonia. i took the first of many slow walks down a cold hall, balancing a tiny baby, an O2 tank, an IV pole, and a chart that was quickly becoming way too thick for such a young thing. we weren't back from xray 30 minutes when our room phone rang....on-call pediatrician explaining Lilah's heart looks enlarged on her chest xray, probably a bad angle, we are going to try and get an echo tonight. now, i'm no expert (or i wasn't at that time), but calling in an echo tech on a saturday night is telling.

that technician could barely choke out 3 words by the end of that scan and was certainly not looking me in the eye...between that and the pictures of her heart that looked like a giant mess, even to my untrained eye, i felt my anxiety rise.

the call came early the next morning. a hole in her heart. a lot of babies have them. it will probably grow together or can be closed. i thought i could not go on....a hole in my baby's heart. but, after hours of tears, i remember thinking. "it will be ok. it could be so much worse". boy was i right.

our pediatrician came by and said they were moving us to the ICU because they could get her better faster. we walked onto that ward.... the air stood still... and the avalanche began.
a pediatric cardiologist informed us that Lilah actually had 2 holes in her heart, but what was worse, and also incurable, was diseased heart muscle. she was in serious heart failure and would be started on a slew of medicines to try and pull her out of it. she would need a central line to her heart asap. her odds are 30:30:30 / medication alone:heart transplant:death (a statistic that still holds, btw). oh, and since she's got all of these cardiac malformations, we are probably looking at a syndrome. a week later, when she'd been pulled out of heart failure, Lilah started having seizures.

i am not kidding ya'll when i say 'i wanted to die'. if there had been a fiery pit or an on-coming semi...i would have jumped. it was too much. i was pretty sure that lifeless, unresponsive infant would either die, or worse, live the life of a vegetable.... unable to enjoy life.

the rest is history. 2 weeks later we took her home. i can't believe it's been a year and it seems like forever. bittersweet memories. it literally hurts to remember, but is good for me also. it was undoubtedly a trial that she/me/ we could not have survived alone. i am able to look back and see that the Lord has provided for our every need and continues to quiet all the fears i have about the challenges. remembering that time makes me all the more thankful to be in this sweet spot right now....Lilah is so much more than i would have hoped for a year ago. it also reminds me that no life is without pain and suffering, and it usually comes in seasons. i hope and pray that i will remember, during hard times in the future, that the dawn always comes.


Jill Temple said...

Oh Gina... tears to remember everything from one year ago. But tears of joy too to think of all that God has done in 12 months. Thank you for allowing us to walk with you during this. We love you sweet, precious family.

notes of em said...

sweet , sweet friend. it does seem like yesterday and yet like a lifetime ago as well.
Praise God for Dr. P. and Praise the Lord for no fiery pits for you to jump into. You are an amazing mother, and are the absolute best thing for Miss. Lilah.
We are still praying.
love you

Cade and Cora said...

what a difference a year can make! You and Lilah are an inspirating and a miracle! You're always in our prayers!

Lufkin Gal said...

Even though I've only watched long distance through your blog, I rejoice with you over the miracles in Lilah's life--and look forward to more in the days ahead! Donna Willis

megan and davis said...

I don't konw why bad things happen to good people, but I know that God wouldn't give such a challenge to anyone who wasn't up for it. I have been peeking in on your life through your blog, and I can see what an aweosome mom you are and how lucky those kiddos are to have you. Thanks for reminding me that even in bad times life can be really good. It is a lesson I am working on right now.
I'm praying for bucketloads of patience for you and for a moment or two of peace every day.
Hang in there. Angie Barta (Burgdorf)