Ellie was absolutely a perfect baby. She never cried. She was just content with whatever. She was absolutely beautiful. To look at her at this age you can't tell that there is anything wrong with her at all.
I was able to nurse her, which I felt was quite an accomplishment on both of our parts.
Although she never cried, she also never smiled.
I was very happy at this point. I was content and optimistic about the future.
When she was about 3 months old her pediatrician referred us to Early Intervention. We got Speech, Occupational Threapy and Physical Therapy, also a Vision Therapist from the School for the Deaf and Blind. With each of them visiting our home once a week, we were very busy. I loved all of her therapists.
She never needed the oxygen we were sent home with. We did use the apnea monitor at night, in case she stopped breathing it would wake us up.
"A" loved his little sister from the very beginning.
Friday, August 1, 2008
What-no surgery??
Now remember we were told that she would be rushed to Primary Children's as soon as she was born to do shunt surgery to drain the excess fluid in her brain. We are on pins and needles thinking that her head is going to explode due to the extra pressure. We just kept asking the nurses and doctors when they were going to do surgery. They said that the neurosurgery hadn't come by yet to see her. We were frantic and upset and frustrated. Anyway the next day or so, neurosurgery had come by, but we weren't there at the time so we didn't get to talk to them. The nurse was able to get a neurosurgeon on the phone, so we could talk to them. We wanted to know why they hadn't operated yet. They did some scans after she was born and they showed extra fluid, but not a lot of pressure. So there would be no surgery right now. We were actually upset that they weren't going to operate and "save" our baby like we had been planning on. We had built ourselves up and gotten ready mentally for surgery and then when they didn't do it, it was frustrating.
She was in ICU for 11 days when she was born. On day 3 she had a seizure. They make you stay in the hospital for 7 days seizure-free before discharging you. She also had sleep apnea (stopped breathing). J (Dad) and I (Mom) had to learn CPR. She came home with oxygen, an apnea monitor (to monitor heart rate and breathing), and a pulse ox (to monitor the oxygen in her blood).
During her stay, J would go to work then drive to Salt Lake after work. I would drop A (Ellie's Big Brother-Age 2) off at Grandma's really early in the morning and drive down to Salt Lake. Then drive back late at night. One night before she came home, they made J and I stay in a little room overnight with Ellie to make sure we could handle all of the machines and everything.
I also remember that she had to sit in her carseat for the amount of time it would take us to get home. I think this was to make sure would keep breathing while sitting upright.
We were really excited when she got to come home, but really nervous too. What if she died on us?
On the way home we stopped at Kid to Kid (a local kids consignment store) and bought a bassinet. Remember, we hadn't gotten a nursery ready. A had just slept in our same bed, but with all of Ellie's machines and sleep apnea, we didn't dare put her in the same bed as us.
She was in ICU for 11 days when she was born. On day 3 she had a seizure. They make you stay in the hospital for 7 days seizure-free before discharging you. She also had sleep apnea (stopped breathing). J (Dad) and I (Mom) had to learn CPR. She came home with oxygen, an apnea monitor (to monitor heart rate and breathing), and a pulse ox (to monitor the oxygen in her blood).
During her stay, J would go to work then drive to Salt Lake after work. I would drop A (Ellie's Big Brother-Age 2) off at Grandma's really early in the morning and drive down to Salt Lake. Then drive back late at night. One night before she came home, they made J and I stay in a little room overnight with Ellie to make sure we could handle all of the machines and everything.
I also remember that she had to sit in her carseat for the amount of time it would take us to get home. I think this was to make sure would keep breathing while sitting upright.
We were really excited when she got to come home, but really nervous too. What if she died on us?
On the way home we stopped at Kid to Kid (a local kids consignment store) and bought a bassinet. Remember, we hadn't gotten a nursery ready. A had just slept in our same bed, but with all of Ellie's machines and sleep apnea, we didn't dare put her in the same bed as us.
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