As for me... I'm still in the hospital for 1 or 2 more days. I have had every possible complication! First, a spinal headache...I can't even sit up. If it's not fading by tomorrow, I'm going to have a blood patch done. My incision formed a hematoma through the whole thing. They had to open it up and it now has to heal from the inside out. I passed out today in the shower while trying to clean it for the first time myself. I can't even go down to NICU to visit Lucy. Aaron has been video taping her for me. The one thing going well is the pumping... I've "got milk!" So, one less thing to worry about.
I'm so glad my baby is here! We feel so blessed! I will update the web page as soon as I'm out of the hospital. Then you can see pictures of our miracle girl.
Rachel and Lucy Coleman FS4SB#82
Lucy- 1 week, 1 day old
Lucy is doing great! They tried to extubate her on Wednesday the 24th. She was off the ventilator for 1 hour but, started having a hard time breathing. So, she's back on it. It seems like everytime we go visit, she has fewer tubes and wires coming out of her body.
She is now being fed breast milk continuouslly, rather than every 3 hours. Which keeps mommy busy pumping milk at home
We try to visit NICU at least 2 times a day. Last night Aaron went to visit and when he started talking to her, she woke right up and opened her eyes. He stayed longer than expected, because he didn't have the heart to leave while she was wide awake and staring at him.
Every time we walk in, she looks better and better. Less fragile! They say that if it were only about her weight and size, she could go home. We need her to be able to breathe on her own and eat without the tubes.
The neurosurgeon is so impressed with her scar from the repair. He has taken pictures! Lucy has had an ultrasound of her head and kidneys, an MRI, a CT scan, her eyes checked out and she has a little cast on her right foot. They say it is not clubbed but, the front is pulling in a little too much. A series of casting should straighten it out. So far everything has "checked out". All of our prayers have been answered. We feel so blessed. Lucy is our little miracle girl. We hope to have her home soon so we can snuggle her!
Lucy is one month old today!
Lucy is doing great. She is now more than 5 pounds. She is still working on getting the hang of nursing. But, I keep telling her she comes from a long line of Nursers and she shouldn't get frustrated!
Lucy's Aunt Sarah is here, staying with us for the Summer. She's helping with Leah and Lucy. Most people comment on Lucy's serious head of hair. She's our "fuzzy chick." We now have many nick names for her. Unfortunately the one that has really stuck is "Baby Dewey." (Leah's contribution, since she can't say "Lucy")
This whole experience has been so unbelievable and now, as we hold this perfect little baby, it seems even more unbelievable. Each day, it feels like we are further removed from the whole experience of our pregnancy and Lucy's original diagnosis. Sometimes I wonder if the whole experience really happened. After Lucy had the intra-uterine repair, our doctors in California diagnosed Lucy with Holoprosencephaly. They believed that parts of her brain were missing. They told us she may only live a matter of hours and asked how far we wanted them to go in trying to sustain her after birth. They asked again if we would consider termination.
So, I sit here holding this gorgeous, healthy baby and wonder where she came from. What happened to the baby we had mentally and emotionally been preparing for?
Before we left NICU, we met with her neurologist and he told us, "There is nothing wrong with this child!"
I kept waiting for him to say, "nothing, except...." But, he didn't. So I started grilling him... what about this, and what about that?
His answer was, "She does not have hydrocephalus. She will not need a shunt. She does not have holoprosencephaly. She does not have any brain malformation. She will most likely never need another surgery related to SB again. I see no indication that she will have any problem walking. There is nothing wrong with this child. Take her home and feed her and love her like you would any other child."
Lucy is 2 years old!!! Wow time flies. I haven't updated in 2 years, I'm so sorry!!! Here's the condensed version. When Lucy was 9 months old her doctors diagnosed her with Cerebral Palsy. At that time, she arched her back all of the time, had her hands in fists that never opened and cried, cried cried! It was a hard time for all. Then, she was hospitalized for 5 days and almost died of urosepsis. Her urine had been backing up into her kidneys and finally came close to poisoning her whole system. Through this, we discovered it was time to start cathing her and suddenly, she was a different baby. I think the tension in her body and constant crying was because she was in pain. Her kidneys hurt! Oh, hindsight!
One year ago she had eye surgery, for strabismus, both eyes. Strabismus is a fancy was of saying cross-eyed. The surgery was an immediate success and her eyes only go wacky when she is very tired or just waking up.
Physically, Lucy still has a larger than average head, but still no shunt. The size of her head has been a mechanical disadvantage for Lulu. It interfered with head control, sitting, balance and rolling over. But, last September after a week of consegrity therapy, she rolled over on her own and has been doing it ever since!
She is now able to sit unassisted for about 1 minute. I think she will have it down really well in the next 4 months. Lucy also has feeling in her legs and her feet, she's working on getting them stronger, they are a little floppy.
Last March, Lucy 's neurologist wanted to warn me that because she had no words and no signs, I would soon be hearing from other professionals that she is mentally retarded. I told him, "I know she's not retarded." He said, "Well, even if she is not retarded, she can't prove it and unforunately that's what we base it on, if the child can prove it." Well, later that month I finished my latest project, "Signing Time" It's a video to teach all infants and children how to sign. Shortly after we completed it, Lucy had a language explosion! She can now sign more than 30 words and she can say just as many!! Every day, Leah teaches her more signs and I teach her more words. I made "Signing Time" because I wanted to share the many benefits of American Sign Language with other families. Sign language provides the earliest form of language acquisition which leads to higher IQ's and increased vocabulary and early reading skills. Babies can sign as early as 9 months! Why not have bilingual children? What's funny is, it ended up being a true gift to myself and to Lucy! I hoped it might help her, but I had NO idea of the tremendous response it would bring from my own little girl. Now I have many people contacting me sharing their own Signing Time Miracles, their child with Down's Syndrome, ADHD, or their child with delayed speech that watched the video and started communicating like never before! We will be releasing the next 2 videos, ("Every Day Signs" and "PlayTime") in our series before December.
I will upload some pictures within the next 2 weeks. We are in the midst of a move and I can't find the cord to hook up the digital camera to the computer:-)
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