Grandma Gale Alexander has repeated this phrase many times in the three weeks (today) since Joella was born. We have learned that this is true.
Joella is one of 40 (on-average) babies in the Neonatal Intensive Care Unit (NICU) at Children's National Medical Center in Washington, DC. Most of the other babies in the NICU were born premature or have some respiratory issue which needs considerable attention. Before becoming a parent three weeks ago, I took for granted that babies just arrive as they should nine or so months after he or she is conceived in Mom's womb. We have learned that being born is truly a miracle from God and a process that is not an easy one for many, including Joella. We are thankful that the wonderful medical staff has provided her with tremendous care and attention during her time at the NICU.
A lot has happened since we last posted a few days ago. Here are the highlights:
-We decided against plastic surgery on Joella's feet. The overwhelming consensus from EB specialists and EB parents recommended to give more time for the skin on her feet to heal before opting for a surgical procedure.
-Another surgery on Joella, however, did occur. Yesterday, we consented to have a surgeon install what is called a broviac right above the bottom of her throat, such that an IV tube can feed antibiotics into her main artery. We were scared to do so, but she needed the antibiotics to stave off an infection, and other non-evasive options did not work. Thankfully, the procedure was successful, and Joella is recovering fantastically well. She had to be under anasthesia and the whole nine yards.
-Her temperature has remained stable the last few days and her wounds are continuing to heal.
-We said good-bye temporarily to one of the key members of our Team Joella, Grandma Gale Alexander. It was tough to say good-bye to this passionate, strong, and wonderful helper, but we are sure we will see her back here in Alexandria soon once Joella returns home. For now, she is back home in Wyoming taking care of her cowboy husband Ron.
-The information everyone wants to know is when is Joella going to come home. We desperately want to know this as well. Our gut says that once her antibiotics are done running their course next Monday, the infection is gone, and she is feeding close to 80% of her feedings via bottle, we should have her home by next week. This is not a given, but more a hope.
-We met another EB parent who lives in Atlanta, GA. He provided excellent insight into caring for and supporting an EB child. It was so encourgaging to listen to a positive parent express that he and his wife raise their child with a mindset that their daughter can grow up to be anything her heart desires. Katie and I adhere to this philosophy.
-Katie and I never cease to be amazed by the genuine kindness and care for us as we await the arrival of our daughter to our home. So many have brought us food, and offered to take care of our daily maintenance. It is hard to know what to say other than "Thank You," and that we hope we can be there for you in your time of need.
Our good friend Darla mentioned a song from Natalie Merchant called "Wonder" on a post today. I have always liked the song, but it now has significant meaning in our lives. Below are the lyrics. Check them out:
"Wonder" by Natalie Merchant.
Doctors have come from distant cities
just to see me
stand over my bed
disbelieving what they're seeing
They say I must be one of the wonders of God's own creation
and as far as they can see they can offer no explanation
I believe fate smiled & destiny laughed as she came to my cradle
"know this child will be able"laughed as my body she lifted
"know this child will be gifted with love, with patience and with faith
she'll make her way
"People see me
I'm a challenge to your balance
I'm over your headshow
I confound you and astound you to know I must be one of the wonders of God's own creation
and as far as you can see you can offer me no explanation
I believe fate smiled & destiny laughed as she came to my cradle
"know this child will be able
"laughed as she came to my mother
"know this child will not suffer
"laughed as my body she lifted
"know this child will be gifted with love, with patience and with faith
she'll make her way"
4 comments:
Joe and Katie,
We pray that you will be bringing Ella home soon. You have a special gift from God, and everything will happen according to his plan. You will be bringing your daughter home soon, and then will begin a new chapter of your family. I can't wait to read it.
As Always,
Joanne and Mike
Glad to hear the procedure went well yesterday and the antibiotics seem to be working. It is an answer to many prayers!
I believe the saying goes, "Slow and steady wins the race"...Team Joella will prevail; with us all cheering and praying the whole way through! :-) Just one day at a time...
Jess
Hey Joe!
I'm thinking about you guys every day. Joella is so beautiful!! I know how great it will be when you finally get to take her home. Good luck with everything!
Tiffany
Thank you so much for sharing this. Bless your buttons..you are all incredible. I have found out in my 100 years that when something happens that we don't want to happen we need to look at the "whole picture.” For every tear we shed, for every frustration we have there is also a shining light, a star asking to be thought about. Everything has a reason and perhaps little Ella is with Katie and Joe because she needed special love and care. And she is in the right place with her mom and dad. Things we take for granted aren't necessarily the way life is. We forget to take time. Time to see the beauty all around us, the beauty of this little girl who is giving more than she is taking. She reminds all to smell the roses, to take time to say 'I love you'. Not to question God about 'why', but to know that he is with all and will be our strength and courage, faith and hope.
Please know that you are in my prayers, you all are on the St. Jude prayer line in Cheyenne.
Be sure you take care of 'you'. Ella needs you as much as you need her.
You are a special 'threesome' and you are very loved.
from Ruthann, Katie's Cheyenne office
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