Tuesday, October 19, 2010

Spina bifida and snuggles

I recently received an email from a woman who is pregnant with a baby who has been diagnosed with spina bifida. She had been directed to my blog. Rich and I want to be (and try to be) a resource. We have experience and we want to share with others. But I don't want to scare anyone. What I have found over the past year or so is that most parents who are pregnant want to know what it is like to care for a newborn who has spina bifida.

I started this blog when the girls were over a year old. I do tag some posts with 'spina bifida' but I realize that the majority of those relate to doctor appointments or medical issues or concerns. And then I started thinking about it and really shouldn't almost all of my posts be tagged with 'spina bifida' because we live with it everyday. Like the post from two days ago with the pictures of Anna with the scary scarecrow. There's a three year old being a three year old. She just happens to have spina bifida.

And I know it is all relative as well. I am somewhat thankful that I wasn't on the internet when I was pregnant with the girls. Believe me when I tell you that I lived in a dream world until they were born. I had no idea that caring for three infants, especially ones who don't require sleep, could be so difficult.

Okay, so the point of this? I'm going to talk about something that happened with Anna last week, which may or may not be spina bifida related, and it had me thinking about the above.

Last Wednesday night was a extremely bad night of sleep at the end of two weeks of bad sleep with snoring, snotty toddlers. Now, I'll preface this by saying that Allie and Emily do tell us here and there that their tummies hurt. This could be for a variety of reasons and usually doesn't last for long. But when Anna tells us, it causes some concern because it is difficult to pinpoint exactly what is wrong.

Is she having poop issues?

Is it just a real stomach ache?

Is she experiencing discomfort from the fluid draining from her shunt?

Does she have a UTI?

Does she have another hernia?

Anna mentioned a few times on Tuesday that her tummy hurt but she seemed fine so we noted that we needed to keep an eye on the situation. Wednesday was the same deal except that about 15 minutes after she fell asleep, she woke up crying and was almost inconsolable. She was rolling around her bed moaning.

Anna, do you want me to hold you?
Do you want to hold my hand?
Do you want me to rub your back?
Do you want me to get into the bed with you?

No. No. No. No. After a few minutes of this, she fell back asleep almost instantaneously. I was a little nervous but she didn't have a fever.

Rich and I managed to get to bed before 10:15. I feel into a deep sleep as soon as my head hit the pillow. I think I had been asleep for a minute, maybe two, when I heard someone crying. Okay, so maybe I wasn't in that deep of a sleep. It was Anna. Again, same rolling around moaning, saying her tummy hurt. Inconsolable. Tired. We finally brought her into the bed with us. More rolling around.

She kept saying that her tummy hurt but she was pointing to an area below her tummy which had us worried that she had another hernia or a UTI. But she didn't have a fever! There was most likely some type of pressure going on because she asked me to cath her, which NEVER happens. So I did.

She fell asleep.

Emily comes charging in around midnight. And she has to sleep right next to me. Right next to me meaning half on top of me. When two or more three year olds enter the bed, we turn sideways to make more room and ensure that no one rolls out of the bed. And Rich gets kicked out. Sometimes literally.

I managed to place Anna at the end of the bed without her fully waking up. Emily insisted on sleeping the correct way in the bed and cried because I wouldn't (I really couldn't!) and she needed me to be right next to her. After a bit of a struggle, she finally fell asleep. And then I listened to snoring and got kicked in the spine a few times.

Anna woke up at 4:00 complaining again. I was afraid she was going to wake up Emily so I brought her downstairs and she asked me to cath her again. My poor baby was exhausted and kept falling asleep. I had thought about keeping her downstairs and trying to get her to sleep on the couch until Emily awakened upstairs and discovered my absence. She was NOT happy. So back upstairs we went.

By the time 6:00 AM rolled around, Rich was sleeping on the loveseat in our room, Anna was sleeping sideways at the bottom left corner of the bed. Em was sleeping the correct way in the middle of the bed and I was curled up sleeping the right way on the right side of the bed. Em was practically pushing me out of the bed.

In my sleep, I hear whimpering. I try to ignore it. I can still hear it. I slowly open my eyes and come face to face with Allie. As I attempt to pull her up into the bed, Emily wakes up. Allie wants to sleep next to me. Emily wants to sleep next to me but won't move over. And Anna's still asleep at the end of the bed. I finally pull Allie up on top of me (yeah, real comfortable.)

Emily keeps moving around. Rolling. Pushing into me. Whining.

Emily, what is wrong?
Emily, why are you doing that?
Emily, stop crying please. Just close your eyes.
Emily, I'm right here.

After what seemed like ten minutes, she finally stopped and said, "I just wanted to snuggle with you." So innocent.

I felt horrible and tried to snuggle with her the best I could with a sleeping Allie on top of me.

That was the last night of bad sleep we've had. The snoring is gone. Anna's tummy problems cleared up a few days later. Although we still don't know exactly what was bothering her. Anna and Allie have slept in their own beds all night for the past 4 or 5 nights. And now I'm sick with whatever they had.


Julia said...

Ouch. You do have it hard. I think I wrote this about a year ago here: I hope my girls don't go that long without sleeping. Guess what? They have. So now I hope they don't keep it until 3, rsrs.

I admire your strength and happiness and positiveness towards the whole multiples+disability thing. It is an inspiration to read you and to see all the adorableness of your babies!

Lisa said...

I'm so sorry. We're struggling with sleep too, but not to the extent you are. I hope it gets better for you someday.