Here goes the task of writing a blog post with enough information but not too much information. I don't want to sound pathetic. (Why do I care? This is life. I am not one to sugar coat things or pretend that my life is perfect). It's a shame that the only time that I write posts is when something bad is happening. It's a shame because there is so much good that is happening in Sweet B's life compared to what we were told to expect. This is something that my husband continually reminds me.
It could be so much worse.
We didn't expect her to live and we certainly never expected her to walk or talk or go to school. So this is something that we must remember. But seriously, who wants to have to repeat a mantra like that over and over?? Let's be real here. Our life is certainly not easy right now, nor has has it been easy for the last three and a half years (since mid-pregnancy with her) and I suspect that we have many more years of it not being easy, and it might not ever be. Being born at a pound and having a tethered cord causes problems. And we see the effects of her being a micro preemie every day. Some are so fortunate that they "grow out of it" and meet their milestones and aren't met with any lasting impacts. Sweet B has definitely been impacted by prematurity and I believe she will feel this impact for her entire life.
Strong B exhausts me in a physical way. He's a typical baby. He cries and demands to nurse and wants attention and love constantly. Sweet B exhausts me emotionally. The worry that I carry for her in my heart weighs me down in a way that I don't even want to describe here.
Since I have had Strong B and he's so typical, I have become keenly aware of just how difficult and different our life is with Sweet B. The hospitalizations and g-tube and therapies and constant appointments is such a contrast to the normal mom exhaustion that I face with Strong B. He eats. He is almost walking. He went from crawling to cruising along furniture within a week rather than a year. We don't have to fight for every single milestone with him. This has been so healing but has also showed me just how different life with her is, and how much more of a daily struggle that she faces as opposed to a typical child.
Sweet B's Cyclical Vomiting Syndrome (CVS) is more challenging for us than the fact that she only eats through a feeding tube. In fact, living with a feeding tube for the rest of her life would be easier than living the rest of her life with CVS. Her cerebral palsy is easier to deal with than CVS. Every month, on the same day each month, Sweet B goes into a CVS episode. We try to ward it off with medication but nine out of ten times this doesn't work. She becomes a child whom we don't know. It is called a migraine of the stomach. She cannot open her eyes fully. She stops talking for the entire week. We don't see her smile ever. She hits all of us. (Disciplining a child who hits because she feels bad is quite a puzzle to figure out, and we haven't figured it out yet. I'm hoping her school will help me with this). She retches nonstop but cannot throw up because of the surgery she had. If we dare to go out in public people stare because she doesn't swallow her spit, she retches, and then large amounts of mucous come out of her mouth and pools into her lap.
Today we were in a parade with the moms club that I am in. I was very embarrassed, worrying that people thought I was crazy for making her go out like this. Let me backtrack and tell you that she had a CVS episode for five days and then she got a virus. We all got this virus that made us cough and feel awful. Even baby boy got the virus. As soon as it got better she went back into a CVS episode. So that's two weeks of her (and us) being completely miserable because she's miserable. I had to go to the parade today. I had to join the land of the living and just get out and socialize. Unfortunately I spent the entire time worrying that people thought she was just having a tantrum or that I had no business having her out. My original plan was to just have Strong B in the parade, but I put Sweet B in her cute dress and I so badly wanted her to have a good time, but it didn't happen. She was retching as we walked and we put the umbrella up on her stroller to hide her and I wiped her mouth as we walked and she retched. It was about as fun as it sounds. It was nice to get out though. I really am serious about that. I need to get out more, especially when she's having an episode. Last night I took Strong B on a date to the mall, and I had such a good time trying clothes on him and just feeling like a typical mom for the hour that we were there.
Sweet B is set to start a very special preschool program in August, and my fear is that every time she gets a virus, a cold, or the flu, that this will put her into a CVS episode and she will miss two weeks out of every month. As it is she is probably going to miss a week of school each month from her monthly CVS episodes. I so badly want her to be able to attend school, make friends, and just live a normal life. I am possibly planning on home-schooling her after preschool but I truly believe that she needs to attend this special needs preschool to get her going. I've heard amazing things about it and have met some of the faculty and found them to be so caring.
The hardest part is seeing her suffer and not being able to do anything. Her personality is normally so vibrant. She chases me around the house, demands her tv shows, runs in to every room that I'm in and slams the door, and when we get out of the car she rushes to the door so that she can slam the house door on us. She loves to dance, just like I used to, and she has no qualms about performing for people. She loves imaginative play and has very involved scenarios going on with her Little People and horse and cow and her Little People playhouse. She has a different voice for them and it is soooo cute.
The second that her CVS starts, this all goes away and she goes into her shell. Her eyelids don't even open all the way. She turns pale. She doesn't want to be held or kissed or for me to read her a story. She wants to lay in bed all day or stare at the tv. So I watch her from a few feet away and I worry. I cry silently. I wish that I wasn't nursing Strong B for that moment in time so that I could take something to help the anxiety that I feel.
Tonight she had a serious retching attack. She could barely catch her breath, so I held her on my lap and tried to drain everything out of her stomach through her g-tube. Mike pushed on her stomach to try to get the air out (with her fundolipication she cannot throw up or burp, so trapped air is painful). Mike repeatedly pushed on her stomach to get all the air out and as the air and liquid came out I poured it into a cup (a clean cup because I have to re administer it) and I was feeling very sad and wondering if she even loved me. It sounds dramatic but I haven't received a hug or a kiss or even a smile for two weeks. Well, I got the encouragement that I needed when she very lightly stroked my arm a few times and patted my leg. It is such a small thing, but so uncharacteristic of her during an episode, and exactly what I needed to keep going until this particular episode is over.
If she is still having the episode on Monday or maybe even tomorrow, then we will hospitalize her. Her GI doctor wants us to hospitalize her after twenty-four hours of an episode, but the hospital is exhausting. You cannot leave the room. You cannot sleep because the doctors and nurses are always in there. I cannot stay there because I am nursing, so this means that I am home alone with Strong B, without a car, and worrying. The doctors administer the meds just like we do, which Sweet B does not tolerate well and becomes mean. But I feel it's just being irresponsible not to take her if she is still bad tomorrow.
I'm praying that we have our Sweet B back tomorrow, although I've been dealing with this long enough to know that she will most likely be in the hospital on Monday.
Tonight I'm thankful for the things that keep me going: An arm rub from my sweet girl, texts from two very good friends, a baby boy who giggles and crawls frantically to me every time I enter the room, parents who call and text me every day, a husband who has been with me since I was nineteen--for eighteen years and still loves me as much as he did when I didn't know this kind of worry, and my three-legged poodle who runs around like a puppy at nine years old and reminds me that disabilities don't define you.
Tomorrow I'm praying Sweet B will spend the day with my mom who has volunteered to watch her as we try to relax. I don't know what we'll do. I want to take Strong B to the beach but I'll probably see other toddlers and miss my girl like crazy. Maybe I'll just sleep while Mike and the boy watch baseball.
I just don't want to have to admit her to the hospital.
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