Now that we're all caught up....
Elizabeth was more awake today that ever before. It seems like she spent 2/3 of the day awake, content and looking around. It was really good for our parent hearts to see her so bright and interactive, despite everything that's still going on:
- She was still having fevers today
- She's developed a whopping diaper rash that makes her cry anytime her bottom gets touched
- Her chest tube output has continued to climb and was up to 100 cc yesterday (Not good!) Fortunately, it's on target to be lower today after restarting her diuretics.
Tomorrow marks the end of her 6-week course of antibiotics for that nasty infection she developed in the ICU. Everyone is hoping that these two antibiotics might be upsetting her stomach and that their discontinuation will help her tummy issues. Today we increased her G-tube feedings by 1cc per hour. As of our leaving the hospital, she still hadn't vomited despite the increased rate. We only have to get to 17. If only we could get to 17!
Some thoughts from Sara ~ On a more personal note, Elizabeth and I had a few moments over the last few days that were pivotal in our bonding...or at least clear evidence that we are bonding. At one point, as a result of her fevers, she needed to give some blood for some labs and it couldn't be taken from one of her existing IVs. So, the nurse had to do an "arterial stick" to draw blood from her artery, which is very painful. She screamed and squirmed and it was all I could do not to bundle her up and run away with her. Afterwards, I leaned over her and nuzzled my face in the crook of her neck, our cheeks touching. I whispered my love for her. She instantly quieted and began rooting on my cheek...we were in our own little world. Then yesterday, she was fussing and after I swaddled her and picked her up (tubes and all) I let her face press against my shirt and again she rooted...literally taking in the scent and taste of me...it was amazing. On one hand, it was such an intimate moment, it seems strange to share it with so large a group...but I know that many of you have been praying for Elizabeth to bond with us...and I want you to know...despite tubes, despite scratchy hospital blankets, alarms and lights, our family is bonding...she is responding to us and her heart seems to have been protected in a special way.
Finally, as Holidays pass, and family comes and goes, Matt and I experience each moment with profound emotions...often our joy over seeing family and introducing our daughter to the world are mixed with the grief over what she has been denied in her short life..."tube-free" cuddling, nursing, quiet sleep, a safe warm crib near her mama and daddy...the list goes on. And while it has always been true, we are in this season more painfully aware that our future is unknown and will most likely be different than the hopes and dreams we've always had. Yet we are learning in small ways, to treasure what is and entrust our future to the only One who has ever known it. In that effort, we have been touched by an article, which I've copied below. It poignantly describes the experience of parents of children with special needs...It is at the same time - where we are, and where we long to be...
WELCOME TO HOLLANDby Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome To Holland".
"Holland?!?" you say, "What do you mean "Holland"??? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy"
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around…and you begin to notice that Holland has windmills...Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes that's where I was supposed to go. That's what I had planned".
And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very significant loss.
But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.
© 1987, by Emily Perl Kingsley. All rights reserved. .
Will you join us in praying:
~That Elizabeth's chest tube would be able to be removed because her drainage has sufficiently dried up. Chest tubes are painful and it's removal would be a step toward going home, as well as a step toward more pain-free cuddling, and would decrease the possible sites for future infections.
~That she would continue to keep her 15 cc's/hour down and would be able to be bumped up to 16 tomorrow without vomiting!
~That she would be able to come home by Christmas...we're still holding out hope.
Thank you for your faithfulness to us.
Matt & Sara