**Please continue to keep Baby Gabrielle and her family in your prayers. The following was written by her mom.Thankful for each day...
OK, so instead of having our parents over while one of us is here, we start leaving the house. Well, Wes has gone back to work and he leaves M-F, but I'm here all the time 24-7 to be here with and for Gabrielle. I know that leaving the house is a good thing for me, because it's happened so very little since we've been home from the hospital. Anyway, lately, the last 2 Fridays I should say my parents have come over and I run little errands or have gone to get some fresh air, or slept... and when I'm out I call them about 2-3 times checking in: Does she need anything, is she ok? Before I leave them I run down the list: This is how to feed her thru her feeding tube, this is what to do if she has a seizure, if she starts fussing like screaming and shaking her head back and forth for over this amount of time let me know and I'll come home and give her some morphine to calm down. Call me for ANYTHING!
Saturday has become a Date day. Wes' mom Connie comes over and we go over the same list. Wes and I have been trying to find somewhere to live so, we go for a ride in the car, have dinner somewhere, pick up last minute grocery/baby items. We went to a movie once. I left my phone on during the movie, ya know just in case... This Saturday, yesterday, we went to look for a place, ate at Outback and came home to check on the baby. Picked up Sadie and Yogi and took them to the dog park by our apartment. It was so much fun... but then I start to feel guilty. Why am I having so much fun when my baby is sick? Then a woman walks by with a baby strapped to the front of her. I think I want to be that Mom. I think to myself don't do that. I need this time out of the house, to feel like a human being. To breathe fresh air, to spend time with my husband.
So, we got home and we're talking with Connie and she said, "she's not breathing". I don't panic I get up and ask how long has it been? She's not sure. I go immediately to the kitchen and grab her meds from the fridge. Wes, picks up Gabrielle and he's trying to talk her out of it (like we always do, it's like we think if she can hear our voices or something she's going to snap out of it, I think it's more comforting to us then helpful to her). I can tell its not like any of the other seizures but the tone in Wes' voice. So, I shake up the stuff and it's like syrup it's not supposed to be like that it's supposed to be liquidy and thick and I cant get it out. I get the phone and start to dial our Carousel nurse. Wes yells to me get over here!! I turn around and she's purple. I've only seen her this shade one other time and we we're in the hospital... I still stay calm give Connie the phone and she puts it on speaker. Of, course it's after hours and I have to leave a message with the answering service. Same thing each time you call after hours...tell the who you are and spell Gabrielle, I'm her mother spell my name. I say (still calmly) Please have a Carousal Nurse call me immediately, she's not breathing! I'm holding my little girl... she's purple has no emotion just blank. I can hear Connie crying and Wes is tense. I kiss her face... "come on punkin head, it's mom" nothing... she's just in my hands all 6 lbs of her limp. Wes, says she's not gonna make it. I hear it but, not responding I don't know how, but I knew it wasn't time yet. I'm doing everything in my power to stay calm. I just stand there holding her willing her to come back. Then I see it... she takes a few little tiny breaths. I'm waiting for her to come out of it like the other seizures waiting for her to cough and gasp for a breath and comes out.. teeny tiny breaths, "come on baby, you can do it" slowly she comes out of it. I hug and kiss her. Then the phone rings. Janet tells me to put the meds in a cup of warm water and give her the morphine then give her the ativan(sp?).
I ask if she thinks this is it? She can't tell me when but this could continue to happen over and over until she expires, it could happen over the next hours or few days, few weeks. But, it's coming soon... as babies with this disease you'll never know when it's going to happen. As they age their brains already not functioning normally can't handle growing. So, now she's drugged up and sleeping. Wes, he's quiet. We all sit down and start to relax. You just never know what 's going to happen. I'm so glad I was home. What if I would have been farther away? What if I was in the store? But, thank God I wasn't. So, Connie goes home after visiting a little longer. We take her to our room and put her in her crib and she's resting peacefully. The 2 of us get into bed and I always think... maybe I should stay up with her... But, I know that I can't.
So, I'm thankful for each day with her and I appreciate every second. So, I may not have gone to church today, and it may happen that she dies and I'm not holding her... but today, I'm thankful...today I'm blessed.
Saturday has become a Date day. Wes' mom Connie comes over and we go over the same list. Wes and I have been trying to find somewhere to live so, we go for a ride in the car, have dinner somewhere, pick up last minute grocery/baby items. We went to a movie once. I left my phone on during the movie, ya know just in case... This Saturday, yesterday, we went to look for a place, ate at Outback and came home to check on the baby. Picked up Sadie and Yogi and took them to the dog park by our apartment. It was so much fun... but then I start to feel guilty. Why am I having so much fun when my baby is sick? Then a woman walks by with a baby strapped to the front of her. I think I want to be that Mom. I think to myself don't do that. I need this time out of the house, to feel like a human being. To breathe fresh air, to spend time with my husband.
So, we got home and we're talking with Connie and she said, "she's not breathing". I don't panic I get up and ask how long has it been? She's not sure. I go immediately to the kitchen and grab her meds from the fridge. Wes, picks up Gabrielle and he's trying to talk her out of it (like we always do, it's like we think if she can hear our voices or something she's going to snap out of it, I think it's more comforting to us then helpful to her). I can tell its not like any of the other seizures but the tone in Wes' voice. So, I shake up the stuff and it's like syrup it's not supposed to be like that it's supposed to be liquidy and thick and I cant get it out. I get the phone and start to dial our Carousel nurse. Wes yells to me get over here!! I turn around and she's purple. I've only seen her this shade one other time and we we're in the hospital... I still stay calm give Connie the phone and she puts it on speaker. Of, course it's after hours and I have to leave a message with the answering service. Same thing each time you call after hours...tell the who you are and spell Gabrielle, I'm her mother spell my name. I say (still calmly) Please have a Carousal Nurse call me immediately, she's not breathing! I'm holding my little girl... she's purple has no emotion just blank. I can hear Connie crying and Wes is tense. I kiss her face... "come on punkin head, it's mom" nothing... she's just in my hands all 6 lbs of her limp. Wes, says she's not gonna make it. I hear it but, not responding I don't know how, but I knew it wasn't time yet. I'm doing everything in my power to stay calm. I just stand there holding her willing her to come back. Then I see it... she takes a few little tiny breaths. I'm waiting for her to come out of it like the other seizures waiting for her to cough and gasp for a breath and comes out.. teeny tiny breaths, "come on baby, you can do it" slowly she comes out of it. I hug and kiss her. Then the phone rings. Janet tells me to put the meds in a cup of warm water and give her the morphine then give her the ativan(sp?).
I ask if she thinks this is it? She can't tell me when but this could continue to happen over and over until she expires, it could happen over the next hours or few days, few weeks. But, it's coming soon... as babies with this disease you'll never know when it's going to happen. As they age their brains already not functioning normally can't handle growing. So, now she's drugged up and sleeping. Wes, he's quiet. We all sit down and start to relax. You just never know what 's going to happen. I'm so glad I was home. What if I would have been farther away? What if I was in the store? But, thank God I wasn't. So, Connie goes home after visiting a little longer. We take her to our room and put her in her crib and she's resting peacefully. The 2 of us get into bed and I always think... maybe I should stay up with her... But, I know that I can't.
So, I'm thankful for each day with her and I appreciate every second. So, I may not have gone to church today, and it may happen that she dies and I'm not holding her... but today, I'm thankful...today I'm blessed.
2 comments:
Wow. I'm speechless.
I am in tears again.
Love, Mom
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