Libby Mei today... little darling!
Libby was born with a condition called Sagittal Craniosynostosis. It is characterized by a very narrow skull. No one knew she had this until we went to China to bring her home. John, as I have mentioned, suspected that she had this condition when he saw her referral pictures. He was sure of it when we met her. One of the most specialized pediatric surgeons in the U.S. (in this condition), lives in our city. (John confirmed this by doing extensive research ). I believe this is a miracle! Her condition is actually not uncommon. It is not always necessary to correct it. In her case, however, her doctors felt that there was a high likelihood that she could suffer blindness or developmental delays if we did not correct it. I felt woozy at the thought of it. We said many prayers, shed even more tears and ultimately trusted that the doctors were right. After James died, we postponed the surgery (initially scheduled for early July, 2006) because we didn't have the strength to face it. Because of her age (it is typically repaired at about two months) her skull had become much harder, and thus the surgery was even more complicated. It involved cutting her skull above the eyebrow all the way around her head, actually removing her cranial vault, expanding it, and turning it around so that the wider portion of her skull would be in front. So that the scar would be hidden by her hair, her scalp was cut where you see it in the photos below, (in a zig zag so that her hair would fall naturally after) and peeled back. I write this gruesome account, only so that Libby will someday appreciate what she (and all of the people who love her!) had to go through. She is now completely healed, and can look forward to a full life, with no limitations in any way. I am grateful that what she had was correctable. I am acutely aware that many, many children in the world suffer so much, and no one is able to help them. We are blessed. We really are so blessed.
Surgery....Day 1: September 8, 2006
The surgery took nine hours. Many of our family and friends showed up in the waiting room with blankets, food, even Yahtzee (my favorite game!). It was so good to have them there with us. It kept John & I steady, kept us from slipping. Helped us keep the faith. I have so much love for these people. They are true and real friends. Family through thick and thin. After she was settled in the ICU, John & I were taken to her. I admit to being horrified that John took these pictures, but now I am glad... glad that we can look back and see just how just far we have come on our journey as a family.
She got such remarkable care. So much love and skill came together to help her. The doctors and nurses were compassionate & tender toward Libby. They explained everything to us, and treated us with so much respect! I stayed in the hospital room with Mei, & got to know them quite well! (Grandpa John stayed at our house and cared for the boys).
Day 2: September 9, 2006
Day 4: September 11, 2006
Libby & I stayed at the hospital for five days. John came several times a day. We were so happy to have Libby's big brothers come on the 4th day for a visit. We both had missed them SO MUCH! The kind nurses suggested that we take her outside in a wagon. The boys got her to smile for the first time since her surgery! It was a blessed sight, this goofy little smile!
Libby with her beloved gray kitty (named "Gray Kitty"!) This picture shows her gnarly scar.
Together again! I know that our family learned & grew so much from this experience. We felt tremendous love from our extended family & friends. , and many people generously told us that they wished they could do this for Libby Mei themselves. (Of course this always made me cry!) Just knowing this gave us courage. (I must say, my family now has "guts"!) Libby's grandparents were so scared, as we were---but they stuck bravely by us, and encouraged us with their unfailing love.
We have learned that the words of Spencer W. Kimball are true:
"God does notice us, and he watches over us.
But it is usually through another person
that he meets our needs."
Now maybe John & I, Libby & our boys, can be that "person" for another.
We want to be.
11 comments:
HCNY 08!
You have such a beautiful family!
Glad libby is thriving today after such a tough surgery.
Oh wow, I remember coming to the hospital to see Libby...her red popsicle stained lips, seeing her in her bed looking asleep (swollen eyes) then watching her instinctively reach for gray kitty realizing that she was awake! What a miracle to see her now. We love her!
Surgery on your little one is rough. Libby is blessed to have you. My oldest Austin had surgery right after we got home from China. It was his 3rd open heart. I too kept track of the events (all 3) through pictures. It has been a blessing to have them. We are reminded of what we learned and felt and Austin who doesn't remember the first 2 has learned humility, faith and appreciation from looking at them. They will be a prize for Libby too. She is so pretty.
Oh Erin, I am just amazed at all that you have been through and how difficult this must be for you to re-live. But it is a wonderful testament to your faith, family and community. I love this picture of Libby, she is a little miracle that is for sure, you would never know that anything was ever wrong, she is just beautiful! I love that dress by the way and would love to know how to get one for Myah! Thanks for all of your caring messages this week! They mean alot to me!
Thanks Leslie... The dress is from
www.grannybsclothesline.com. (They have bloomers too!)
Thanks for the link Erin, I am in love with those dresses, I might have to order a few! I love that print the best though!
Wow, you have been through so much in such a short time. I am glad Libby Mei is fine now. My oldest son had skull surgery when he was about 6 months old. I know hpw scary it can be. He also has that zigzag scar across half his head.
I posted about it in November or beginning of December. I also took a pciture (only 1) and am so glad I have it because it is part of his life story.
Blessings to you.
Kim
I just adore reading you lovely tributes to your Precious little girl. Your blog is just Beautiful. Jamie
Our son was born with bilaterial craniosynostosis. We know exactly the feelings you experienced. He had surgery at 5 1/2 months and 5 1/2 years. He, like your precious daughter, is perfectly healthy now. Almost ten years old and perfect!
Glad to have stumbled across your blog!
Oh my goodness you have been through so much. What a strong and beautiful family! I found you by way of Journey to Our Daughter and I look forward to checking back!
PS I recently made my blog private but I would be happy to send you an invitation preppypinkgreen@yahoo.com
Hi,
I am a friend of Liz Kemp's and I was scrolling through your blog and thought it was so cute. I was going to leave a comment on a couple of your other posts but I'm glad I kept scrolling. My daughter Sophia was also diagnosed with saggital craniosynostosis. She had her surgery when she was 8 months old and it was the most agonizing experience I've ever had to endure, as I'm sure you know. I wrote blogs about it. You can see them here and here.
Back then I blogged on myspace so that's where I'm sending you. Libby is beautiful and it's obvious the amount of love you have for her. I think you're both so lucky yo have each other.
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