Beth/TX
10-25-2006, 06:31 PM
Unfortunately things are not good at all. I'm having an extremely hard time dealing with everything too.
Ava was born at 9:22am on Wednesday morning. She weighed 7 lbs and was 19 in long. Within an hour of her birth we were informed she has Down's Syndrome. I never thought in a million years I'd ever hear those words. My whole world came crashing down. All the dreams I had of how she would be were gone in an instant. I have never experienced such deep sorrow and pain. It's like mourning a death. We were told later that day that she also has a heart defect that is common in Down's babies. She has a hole inside her heart, so none of the 4 chambers are separated. This results in her blood flow being out of whack in her heart. This weird blood flow is putting her lungs at risk. She will have to have heart surgery when she is 4-6 mons of age.
She spent the first 3 days in NICU. By the last day I was in the hospital, she was transfered to a stage 2 nursery, which was good news. Unfortunately, she will be there for anywhere from 2 weeks (optimistic) to several weeks (probable). She is having a problem eating, which is another common problem with Down's babies. They lack muscle tone and control and are unable to suck well from a bottle. She needs to be able to drink 60 cc consistently by bottle before she will be discharged. Right now they only have her being bottle fed 2 times out of the 8 feedings. The other 6 feedings are done via gavage tube feedings. The most she has consumed from a bottle thus far has been 37 cc, and that was only in one rare feeding. Most have been around 20 cc. Her platelet count is also low, as is her sodium levels in her blood. They are keeping an eye on that too. They are also keeping a watch on her heart to make sure she doesn't develop congestive heart failure. She will need to go on medications if she develops it, until she weighs enough to have the heart surgery.
We are only able to go up to the hospital to see her twice a day, due to dh having to work, and having to tend to dd1 after school. Ds is staying with my mom at the moment. Once ds is home, the time we will get to spend with Ava will be compromised even more while she's at the hospital. I feel so detached from her. My family and friends have been incredibly helpful thus far, enabling us to see Ava in the evenings, while someone stays to tend to dd1 and get her in bed.
I feel so helpless. People keep telling me it will get easier, and that I'm strong enough to get through this. But right now, I just can't see that. I'm a total wreck. I want to be with Ava all the time to make sure she knows me, and to make sure she is comforted. That just isn't feasible tho with the 2 other dks.
With all that being said tho, I feel such love and hope when I am with Ava. When I look into her sweet little face, I forget all my fears. I forget about her condition, and all that is to come with it. She is just a precious baby that I want to pour all of my love into. I cannot wait for the day she comes home.
I have lots of research to do on Down's Syndrome. I want to be as well-read on the subject as possible by the time she comes home. I'm know by then I'll be ready to dive in and start giving her all the special needs she will require.
I am desperately asking for prayers for Ava and our family. Please pray that God will give us strength, guidance, and wisdom to get through this. Please pray that He will keep Ava's heart strong until surgery, and help her to learn to bottle feed so she can come home soon.
Thank you, from the bottom of my heart.
Ava was born at 9:22am on Wednesday morning. She weighed 7 lbs and was 19 in long. Within an hour of her birth we were informed she has Down's Syndrome. I never thought in a million years I'd ever hear those words. My whole world came crashing down. All the dreams I had of how she would be were gone in an instant. I have never experienced such deep sorrow and pain. It's like mourning a death. We were told later that day that she also has a heart defect that is common in Down's babies. She has a hole inside her heart, so none of the 4 chambers are separated. This results in her blood flow being out of whack in her heart. This weird blood flow is putting her lungs at risk. She will have to have heart surgery when she is 4-6 mons of age.
She spent the first 3 days in NICU. By the last day I was in the hospital, she was transfered to a stage 2 nursery, which was good news. Unfortunately, she will be there for anywhere from 2 weeks (optimistic) to several weeks (probable). She is having a problem eating, which is another common problem with Down's babies. They lack muscle tone and control and are unable to suck well from a bottle. She needs to be able to drink 60 cc consistently by bottle before she will be discharged. Right now they only have her being bottle fed 2 times out of the 8 feedings. The other 6 feedings are done via gavage tube feedings. The most she has consumed from a bottle thus far has been 37 cc, and that was only in one rare feeding. Most have been around 20 cc. Her platelet count is also low, as is her sodium levels in her blood. They are keeping an eye on that too. They are also keeping a watch on her heart to make sure she doesn't develop congestive heart failure. She will need to go on medications if she develops it, until she weighs enough to have the heart surgery.
We are only able to go up to the hospital to see her twice a day, due to dh having to work, and having to tend to dd1 after school. Ds is staying with my mom at the moment. Once ds is home, the time we will get to spend with Ava will be compromised even more while she's at the hospital. I feel so detached from her. My family and friends have been incredibly helpful thus far, enabling us to see Ava in the evenings, while someone stays to tend to dd1 and get her in bed.
I feel so helpless. People keep telling me it will get easier, and that I'm strong enough to get through this. But right now, I just can't see that. I'm a total wreck. I want to be with Ava all the time to make sure she knows me, and to make sure she is comforted. That just isn't feasible tho with the 2 other dks.
With all that being said tho, I feel such love and hope when I am with Ava. When I look into her sweet little face, I forget all my fears. I forget about her condition, and all that is to come with it. She is just a precious baby that I want to pour all of my love into. I cannot wait for the day she comes home.
I have lots of research to do on Down's Syndrome. I want to be as well-read on the subject as possible by the time she comes home. I'm know by then I'll be ready to dive in and start giving her all the special needs she will require.
I am desperately asking for prayers for Ava and our family. Please pray that God will give us strength, guidance, and wisdom to get through this. Please pray that He will keep Ava's heart strong until surgery, and help her to learn to bottle feed so she can come home soon.
Thank you, from the bottom of my heart.