It's way past time to update you about my second baby. I'm not sure what I've told whom so I'll just start from the beginning.
In May I could see that Geremiah was becoming an "only child" & needed someone to share time & attention. In July I got my 2nd brain injured baby. Shylah was 4 mo old, a preemie, SGA (Small for Gestational Age) at 33 weeks/1000gm twin w/short cord, TE fistula/Esophogeal atresia & bad reflux. I had her because 6 wk after her discharge from NICU she suffered a Non Accidental Traumatic Brain Injury. It was deemed Shaken Baby as she had a fractured skull, 2 leg fractures & liquifaction of the brain, but the story & facts were conflicting. Her twin brother & 2 y.o. sister were placed with the Maternal Grandmother & Shylah was placed with me. After months of police investigation, no charges were ever filed.
She had never attached to anyone; her vision was questionable, she didn't vocalize & when disturbed cried intensly with not normal differentiation. She was on Phenobarb for seizures she had after the injury. She weighed 8.5 lb & ate 2 oz every 3 hours. This stay-at-home grandma soon became sleep deprived. All this was compounded by her severe reflux. In spite of medication, she had many painful regurgitations.
In Sept she began to tell me she was "drowning" when she took her bottle & finally just quit eating. Her atresia repair had constricted & she needed dilation. After that I gavaged her for 2 1/2 mo. until she was big enough for G tube w.Nissan wrap. During this time she began having episodes of abdominal pain so severe it doubled her up so violently she could nearly through herself out of my arms. Then they realized that her tracheoesophogeal fistula had been so low on the esophogus that a wrap might preclude her ever being able to swallow even her own secretions so they went with a Jejunostomy (for continuous feeds) & a gastrostomy for meds. That happened Dec 19 thru Christmas. During that surgery they discovered she had multiple ulcers in her stomach which explained her violent pain. I'm treating her with Carafate & it has given her great relief.
(Her feedings are continuous for at least 20 hr/day & with occasional pain & nausea meds, we both sleep well at noc.)
Then in Feb her J tube became terribly infected & required a rest thus switching her feeding to the gastrostomy & setting her up again for reflux. That lasted a week & just as I was ready to switch back to the J tube, it literally fell out! It had healed over inside during the "rest" & I was unable to insert a temporary Foley cath SO ended up in hospital 2/6 for a transgastric jejunal feeding tube inserted into stomach then on thru to jejunum & on into the small intestine. It's about 12 in. long total.
This worked great after spending 3 days in hospital with her constant emesis of secretions that wouldn't pass out of the lower esophogus.
She's very strong & has protected her airway thru all this but I never let her out of my earshot in case she chokes or needs suctioning.
THEN, in spite of my great precautions to prevent her tube accidentally being pulled out, yesterday I was lowering her into the bathtub, free of all my wraps to prevent tugging & caught the tube between tub & me & yanked it out, complete with bulb still inflated. Thought I would die! I inserted a small gastrostomy tube the Dr had given me in the event of just this sort of accident & now am feeding her again through the stomach until they can schedule her for replacement of the GJ tube.
I've been asked if it makes me feel old or young to be so busy? It is making me strong & hasn't killed me. I do feel much younger than I look or am. (68 yr last mo.) I never got to be a stay at home mom & I love being a stay at home grandma.
I'm learning so much about neuroplasticity & have the satisfaction of coordinating both Geremiah's & Shylah's care & therapy. We have great therapists & we all work together so well. I'm just anxious for Shylah to get past her birth issues so we can focus entirely on her brain repair. My "handbook" is "The Brain That Changes Itself" by Norman Doidge, MD. It's so well written that it's hard to put down and covers every age & every kind of brain condition. I've given one to every therapist who touches my children, including their Pediatrician!
In spite of all her abdominal issues, she has progress remarkably. She definitely sees. Her brain injury was on the right side & in the beginning she would only look to the right. She now looks past midline to the left, moves both legs equally & is doing better with her left arm. She puts her rt. fist into her mouth & is begining to make attempts at reaching for things. I've started patching her left eye 2 hr/day to correct mild amblyopia in her rt. eye. She now vocalizes & responds with social smiles. Her cry is differentiated & appropriate in expressing her needs.
Colorado School for Deaf & Blind send a therapist twice monthly. They built her a "Little Room" that is decorated just for her to let her discover things on her own. It is 30" X 30" X 30" & closed on top & 3 sides. This also allows her to hear her own voice. She loves it & spends 2-3 hours at a time there. It is in my combination Sewing Room/Office/Play Room so I can be with both Geremiah & Shylah & still occasionally make a quilt (or pay bills.)
At 1st I took her to Pueblo 3 times/wk for supervised parental visits but because of her many issues it has been approved for her parents & grandparents to visit her in my home twice weekly. This is much easier on both of us & gives me a lot of opportunity to teach Mom what I'm doing with her.
I'm comfortable with the likelihood she will eventually be reunited with her family but it will not be until she is medically stable. I'm just hoping for sufficient time to work with her neurological rehab. I think she has great potential.
As you might guess, she & I are very attached. She follows my voice & responds to my efforts to comfort her. The only person who has ventured to watch her for a few hours is Tracye. We've probably been apart only 10 hours plus the hours she has spent in surgery. She goes everywhere with me. She's been to Oklahoma, 2 weddings & Mom's funeral & many restaurants.
She now weighs 20 lbs & has 2 teeth!
She is very good for Tanner, Tehya, Giovanni & Geremiah. They all beg to hold her & try to interact with her. It has been good for her...she's accustomed to noise of little children! Whenever Geremiah hears her crying or sees me comforting her he asks, "Owwy?" He understands & is remarkably patient when I say, "I have to go take care of the baby. I'll be right back." He usually tags along to watch.
I apologize for so much information but now you know why I've not even had time to check my e-mail let alone flood you with pictures as I did with Geremiah. Hopefully that is changing.
If I've repeated information you already knew it's because I've slept since the last time I talked to you.
Much love, Lynne
In May I could see that Geremiah was becoming an "only child" & needed someone to share time & attention. In July I got my 2nd brain injured baby. Shylah was 4 mo old, a preemie, SGA (Small for Gestational Age) at 33 weeks/1000gm twin w/short cord, TE fistula/Esophogeal atresia & bad reflux. I had her because 6 wk after her discharge from NICU she suffered a Non Accidental Traumatic Brain Injury. It was deemed Shaken Baby as she had a fractured skull, 2 leg fractures & liquifaction of the brain, but the story & facts were conflicting. Her twin brother & 2 y.o. sister were placed with the Maternal Grandmother & Shylah was placed with me. After months of police investigation, no charges were ever filed.
She had never attached to anyone; her vision was questionable, she didn't vocalize & when disturbed cried intensly with not normal differentiation. She was on Phenobarb for seizures she had after the injury. She weighed 8.5 lb & ate 2 oz every 3 hours. This stay-at-home grandma soon became sleep deprived. All this was compounded by her severe reflux. In spite of medication, she had many painful regurgitations.
In Sept she began to tell me she was "drowning" when she took her bottle & finally just quit eating. Her atresia repair had constricted & she needed dilation. After that I gavaged her for 2 1/2 mo. until she was big enough for G tube w.Nissan wrap. During this time she began having episodes of abdominal pain so severe it doubled her up so violently she could nearly through herself out of my arms. Then they realized that her tracheoesophogeal fistula had been so low on the esophogus that a wrap might preclude her ever being able to swallow even her own secretions so they went with a Jejunostomy (for continuous feeds) & a gastrostomy for meds. That happened Dec 19 thru Christmas. During that surgery they discovered she had multiple ulcers in her stomach which explained her violent pain. I'm treating her with Carafate & it has given her great relief.
(Her feedings are continuous for at least 20 hr/day & with occasional pain & nausea meds, we both sleep well at noc.)
Then in Feb her J tube became terribly infected & required a rest thus switching her feeding to the gastrostomy & setting her up again for reflux. That lasted a week & just as I was ready to switch back to the J tube, it literally fell out! It had healed over inside during the "rest" & I was unable to insert a temporary Foley cath SO ended up in hospital 2/6 for a transgastric jejunal feeding tube inserted into stomach then on thru to jejunum & on into the small intestine. It's about 12 in. long total.
This worked great after spending 3 days in hospital with her constant emesis of secretions that wouldn't pass out of the lower esophogus.
She's very strong & has protected her airway thru all this but I never let her out of my earshot in case she chokes or needs suctioning.
THEN, in spite of my great precautions to prevent her tube accidentally being pulled out, yesterday I was lowering her into the bathtub, free of all my wraps to prevent tugging & caught the tube between tub & me & yanked it out, complete with bulb still inflated. Thought I would die! I inserted a small gastrostomy tube the Dr had given me in the event of just this sort of accident & now am feeding her again through the stomach until they can schedule her for replacement of the GJ tube.
I've been asked if it makes me feel old or young to be so busy? It is making me strong & hasn't killed me. I do feel much younger than I look or am. (68 yr last mo.) I never got to be a stay at home mom & I love being a stay at home grandma.
I'm learning so much about neuroplasticity & have the satisfaction of coordinating both Geremiah's & Shylah's care & therapy. We have great therapists & we all work together so well. I'm just anxious for Shylah to get past her birth issues so we can focus entirely on her brain repair. My "handbook" is "The Brain That Changes Itself" by Norman Doidge, MD. It's so well written that it's hard to put down and covers every age & every kind of brain condition. I've given one to every therapist who touches my children, including their Pediatrician!
In spite of all her abdominal issues, she has progress remarkably. She definitely sees. Her brain injury was on the right side & in the beginning she would only look to the right. She now looks past midline to the left, moves both legs equally & is doing better with her left arm. She puts her rt. fist into her mouth & is begining to make attempts at reaching for things. I've started patching her left eye 2 hr/day to correct mild amblyopia in her rt. eye. She now vocalizes & responds with social smiles. Her cry is differentiated & appropriate in expressing her needs.
Colorado School for Deaf & Blind send a therapist twice monthly. They built her a "Little Room" that is decorated just for her to let her discover things on her own. It is 30" X 30" X 30" & closed on top & 3 sides. This also allows her to hear her own voice. She loves it & spends 2-3 hours at a time there. It is in my combination Sewing Room/Office/Play Room so I can be with both Geremiah & Shylah & still occasionally make a quilt (or pay bills.)
At 1st I took her to Pueblo 3 times/wk for supervised parental visits but because of her many issues it has been approved for her parents & grandparents to visit her in my home twice weekly. This is much easier on both of us & gives me a lot of opportunity to teach Mom what I'm doing with her.
I'm comfortable with the likelihood she will eventually be reunited with her family but it will not be until she is medically stable. I'm just hoping for sufficient time to work with her neurological rehab. I think she has great potential.
As you might guess, she & I are very attached. She follows my voice & responds to my efforts to comfort her. The only person who has ventured to watch her for a few hours is Tracye. We've probably been apart only 10 hours plus the hours she has spent in surgery. She goes everywhere with me. She's been to Oklahoma, 2 weddings & Mom's funeral & many restaurants.
She now weighs 20 lbs & has 2 teeth!
She is very good for Tanner, Tehya, Giovanni & Geremiah. They all beg to hold her & try to interact with her. It has been good for her...she's accustomed to noise of little children! Whenever Geremiah hears her crying or sees me comforting her he asks, "Owwy?" He understands & is remarkably patient when I say, "I have to go take care of the baby. I'll be right back." He usually tags along to watch.
I apologize for so much information but now you know why I've not even had time to check my e-mail let alone flood you with pictures as I did with Geremiah. Hopefully that is changing.
If I've repeated information you already knew it's because I've slept since the last time I talked to you.
Much love, Lynne
21 attachments — Download all attachments View all images
 | 0.5 Shylah & Stellaluna.jpg 59K View Download |
 | 1 PreOp 12192008.jpg 47K View Download |
 | 2 PostOp Miserable!.jpg 67K View Download |
 | 2.5 Christmas in Hospital.jpg 84K View Download |
 | 3 Christmas Day in Hospital.jpg 65K View Download |
| 4 |
 | 5 Tummy-down time.jpg 89K View Download |
 | 6 Giovanni talking to Shylah.jpg 58K View Download |
 | 7 Shylah & twin, Joseph.jpg 66K View Download |
 | 8 Shylah's big sister.jpg 71K View Download |
 | 9 Check the cat!.jpg 69K View Download |
 | 10 Nap time.jpg 70K View Download |
 | 12 This is not fun!.jpg 45K View Download |
 | 13 Giovanni's such a good brother.jpg 57K View Download |
 | 15 doubled up in pain.jpg 6K View Download |
 | 14 This is hard!.jpg 45K View Download |
 | 16 Goin' to the Bonfire..jpg 46K View Download |
 | 17 Shylah's 1st Bonfire!.jpg 57K View Download |
 | 18 Tanner & Gio tending fire.jpg 53K View Download |
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