As this first month has flown by, it has gotten easier to deal with hospital life.
I have learned medical terms, doctor's names, heart medications, and where to get the best cheeseburger. I have laughed, cried, and been bullied by Depression. But most importantly, I have watched my baby recover wonderfully.
It hasn't all been easy. I battle daily with myself; trying to focus on his amazing progress instead of dwelling on his syndrome. Everyday I learn something new about Williams Syndrome. Some things are cute; like the inquisitive nature and asking questions you as a parent aren't prepared to answer. Other things are harder to deal with. The many medical problems, the therapists he will need, the bullying he will experience in school and the hardest yet: the look he will get when he realizes he is different from the other kids.
"I want to be normal like you mommy" A fellow Williams mother was told this the other day and I felt pain alongside her, knowing that someday I just might hear the same thing.
I try not to think about it but it's hard. I joined a Williams Syndrome support group on Facebook and for the most part it has been wonderful. The support these ladies pour out is amazing; they can answer my questions and join in my happiness as my baby gets better. But it is also hard. It's hard to see other children with Williams and know what Peanut will have to go through. Williams kids hit their milestones years after other kids. I read how some children are 5 and are still in diapers, others are 8 are still eating baby food. This scares me.
It's sad then you see other babies leaving the PICU, able to go home with their families, while Peanut has to stay. The step-down unit is almost empty. It's not as busy with so many kids gone, its quieter, and lonelier.
On a happier note; Peanut is recovering wonderfully. The doctors are working on weaning him from his medications and the oxygen. He has had tests done for other symptoms, and thankfully nothing was found. I am hoping that no other physical characteristics of Williams show up. So far, he only has problems with his heart. No kidney, gallbladder, or eye problems. He did fail his hearing test in his left ear but hopefully his hearing loss isn't too significant.
I don't do much during the day. My day starts around 7:30; I wake up automatically with no alarm. I get dressed, get in my car, drive across the parking lot and park. My commute is pretty short :) On nice days, I walk.
My breakfast is waiting on me when I get to the hospital room. Since I am pumping, they provide me (free of charge) breakfast, lunch, and dinner. I eat as I wait for rounds. The doctors usually show up between 9:30 and 11. By that time, I might as well wait on lunch. So I'm usually at the hospital from 8am to 1. I usually go out for a bit, just driving or shopping to relax and get away from the hospital.
It took me about two weeks, after we got here, to laugh without feeling guilty. I didn't want to go anywhere or do anything because I felt like a bad mother for leaving. People tell you that you have to take care of yourself in order to take care of your baby but I didn't hear them. I just see my sick baby and I stop thinking about myself. Now that things have slowed down, I can go get a bite to eat, or do some light shopping without feeling so bad.
I do have a lot of time to think. I think about when I was pregnant. Why didn't they notice anything in the ultrasounds? Can't they pick up on heart problems with an ultrasound? I had a perfectly normal pregnancy. No cramping, no bleeding but I wonder; what if they had seen it earlier?
I can't blame my OB though. She is an amazing doctor but she's not a cardiologist. I don't have any hard feelings against her, just sometimes I wish I could have known sooner.
And then I think: No, I'm glad I didn't know.
I'm glad I was able to take him home not knowing that he had a life threatening heart problem. I would have been a nervous wreck, not sleeping and constantly checking him to see if he was still breathing. Those 5 days I had him home with me were beautiful. I was sleep deprived and cranky, but seeing that tiny little boy made me smile. I love his cute little baby sounds and, of course, the way he smells. If they made a perfume of "Ode de Newborn" I would wear it every day.
I thank God Peanut survived those first couple days. The cardiologist we saw the first time told us he shouldn't have survived birth.
"He should have died when they cut the umbilical cord."
But he didn't.
He is alive and thriving.
He is my little Peanut and he's beautiful.
We still have at least two weeks here. By the looks of it, I will be spending my birthday in a hospital. I talked to the Counselor they have here yesterday, and she said she would make me a cake. :) She is really nice, and she listens as I blab and blab about anything and everything. Since Hubby is gone, I don't really have someone to blab to while I'm just sitting around. I know I have people I can call, but its nice to have someone here in the hospital to talk to.
The staff are amazing. They have a department called Child Life; their job is to come around and distract the kids while they are being examined or getting a shot. They come by and pass out toys and stuffed animals. The Child Life guy, Joe, is here specifically for the PICU. He stopped by yesterday to see if we wanted any toys or books.
"I think he's a little young for these Joe"
"Well, you're not! Take some..here, heres a book"
"Um, okay"
"And take some of these stuffed animals, take 'em all, where's your car?!"
"Har har."
Like I said, the staff are amazing.
I miss my firstborn, and my hubby all the time. I know its better this way; for Hubby to keep going to work and for Monkey to visit once a week. But I miss being there for everything. I've never been away from Monkey this long before. I'm missing him growing and I hate it. He's learning new words and actions, and is growing like a weed and I'm not there for it. I get the updates and hear his silly sounds over the phone but it's not the same. I'm just glad Monkey isn't old enough to really understand what is going on. He is just on one big vacation and is loving the attention. That makes it a little easier.
The support from friends and family is overwhelming. The staff at the prison where Hubby works have been so understanding; it makes it less stressful when Hubby wants to take some time off. They are organizing a Hot Dog sale to help us with our bills.
Which have started flowing in, by the way. We got the first of Peanut's hospital bills yesterday. Let the tally begin! Our insurance (SHOULD) cover up to 2 million, which I'm told we will reach quite easily. I'm going to keep everything and add it up to see how much Peanut's surgeries, medications, room stays, etc. are costing. I follow another blog of a newborn with a brain tumor (read more here) and one MRI cost $24,000. So I'm expecting a huge bill for his heart surgery. It should be fun!
I have learned medical terms, doctor's names, heart medications, and where to get the best cheeseburger. I have laughed, cried, and been bullied by Depression. But most importantly, I have watched my baby recover wonderfully.
It hasn't all been easy. I battle daily with myself; trying to focus on his amazing progress instead of dwelling on his syndrome. Everyday I learn something new about Williams Syndrome. Some things are cute; like the inquisitive nature and asking questions you as a parent aren't prepared to answer. Other things are harder to deal with. The many medical problems, the therapists he will need, the bullying he will experience in school and the hardest yet: the look he will get when he realizes he is different from the other kids.
"I want to be normal like you mommy" A fellow Williams mother was told this the other day and I felt pain alongside her, knowing that someday I just might hear the same thing.
I try not to think about it but it's hard. I joined a Williams Syndrome support group on Facebook and for the most part it has been wonderful. The support these ladies pour out is amazing; they can answer my questions and join in my happiness as my baby gets better. But it is also hard. It's hard to see other children with Williams and know what Peanut will have to go through. Williams kids hit their milestones years after other kids. I read how some children are 5 and are still in diapers, others are 8 are still eating baby food. This scares me.
It's sad then you see other babies leaving the PICU, able to go home with their families, while Peanut has to stay. The step-down unit is almost empty. It's not as busy with so many kids gone, its quieter, and lonelier.
On a happier note; Peanut is recovering wonderfully. The doctors are working on weaning him from his medications and the oxygen. He has had tests done for other symptoms, and thankfully nothing was found. I am hoping that no other physical characteristics of Williams show up. So far, he only has problems with his heart. No kidney, gallbladder, or eye problems. He did fail his hearing test in his left ear but hopefully his hearing loss isn't too significant.
I don't do much during the day. My day starts around 7:30; I wake up automatically with no alarm. I get dressed, get in my car, drive across the parking lot and park. My commute is pretty short :) On nice days, I walk.
My breakfast is waiting on me when I get to the hospital room. Since I am pumping, they provide me (free of charge) breakfast, lunch, and dinner. I eat as I wait for rounds. The doctors usually show up between 9:30 and 11. By that time, I might as well wait on lunch. So I'm usually at the hospital from 8am to 1. I usually go out for a bit, just driving or shopping to relax and get away from the hospital.
It took me about two weeks, after we got here, to laugh without feeling guilty. I didn't want to go anywhere or do anything because I felt like a bad mother for leaving. People tell you that you have to take care of yourself in order to take care of your baby but I didn't hear them. I just see my sick baby and I stop thinking about myself. Now that things have slowed down, I can go get a bite to eat, or do some light shopping without feeling so bad.
I do have a lot of time to think. I think about when I was pregnant. Why didn't they notice anything in the ultrasounds? Can't they pick up on heart problems with an ultrasound? I had a perfectly normal pregnancy. No cramping, no bleeding but I wonder; what if they had seen it earlier?
I can't blame my OB though. She is an amazing doctor but she's not a cardiologist. I don't have any hard feelings against her, just sometimes I wish I could have known sooner.
And then I think: No, I'm glad I didn't know.
I'm glad I was able to take him home not knowing that he had a life threatening heart problem. I would have been a nervous wreck, not sleeping and constantly checking him to see if he was still breathing. Those 5 days I had him home with me were beautiful. I was sleep deprived and cranky, but seeing that tiny little boy made me smile. I love his cute little baby sounds and, of course, the way he smells. If they made a perfume of "Ode de Newborn" I would wear it every day.
I thank God Peanut survived those first couple days. The cardiologist we saw the first time told us he shouldn't have survived birth.
"He should have died when they cut the umbilical cord."
But he didn't.
He is alive and thriving.
He is my little Peanut and he's beautiful.
We still have at least two weeks here. By the looks of it, I will be spending my birthday in a hospital. I talked to the Counselor they have here yesterday, and she said she would make me a cake. :) She is really nice, and she listens as I blab and blab about anything and everything. Since Hubby is gone, I don't really have someone to blab to while I'm just sitting around. I know I have people I can call, but its nice to have someone here in the hospital to talk to.
The staff are amazing. They have a department called Child Life; their job is to come around and distract the kids while they are being examined or getting a shot. They come by and pass out toys and stuffed animals. The Child Life guy, Joe, is here specifically for the PICU. He stopped by yesterday to see if we wanted any toys or books.
"I think he's a little young for these Joe"
"Well, you're not! Take some..here, heres a book"
"Um, okay"
"And take some of these stuffed animals, take 'em all, where's your car?!"
"Har har."
Like I said, the staff are amazing.
I miss my firstborn, and my hubby all the time. I know its better this way; for Hubby to keep going to work and for Monkey to visit once a week. But I miss being there for everything. I've never been away from Monkey this long before. I'm missing him growing and I hate it. He's learning new words and actions, and is growing like a weed and I'm not there for it. I get the updates and hear his silly sounds over the phone but it's not the same. I'm just glad Monkey isn't old enough to really understand what is going on. He is just on one big vacation and is loving the attention. That makes it a little easier.
The support from friends and family is overwhelming. The staff at the prison where Hubby works have been so understanding; it makes it less stressful when Hubby wants to take some time off. They are organizing a Hot Dog sale to help us with our bills.
Which have started flowing in, by the way. We got the first of Peanut's hospital bills yesterday. Let the tally begin! Our insurance (SHOULD) cover up to 2 million, which I'm told we will reach quite easily. I'm going to keep everything and add it up to see how much Peanut's surgeries, medications, room stays, etc. are costing. I follow another blog of a newborn with a brain tumor (read more here) and one MRI cost $24,000. So I'm expecting a huge bill for his heart surgery. It should be fun!
