So all preemie moms know the saying, "Two steps forward, one step back." But goodness, this week it seems Maggie has taken four steps back, maybe more. I know that sounds so 'Negative Nancy' because she is crawling a few feet (yeah!), but with the two major health issues in her life she has definitely had some tough days recently.
You see, ten days ago things were going great. Maggie was on bolus feelings during the day (3-4 separate "meals" through the tube instead of a continuous feed). And she actually opened her mouth for a bite of baby food, which she hasn't done since last summer cause she hasn't been interested or hungry, or both! But during the past week it has become obvious that the Botox in her stomach has worn off completely. She is vomiting seven to eight times a day (projectile, mind you), which has made it impossible to get in her goal of 945 ml of Pediasure a day. We maybe can get 800 in, but subtract about 400 for all that vomitting. Translation: if the vomitting doesn't get better, she will start losing weight. Furthermore, she is not interested in food anymore so all that progress we made in the past month has been erased.
To top it off, we visited the "Botox" doctor last week for a follow up and she was just stumped that Maggie's neck doesn't look any better. I was so looking forward to our visit, hoping that she had another trick up her sleeve that I hadn't thought of. With her finger on her chin, she just stared at Maggie like a specimen. (I am so used to this look; I hate this look!) And she had nothing really new to offer except another round of Botox. That's fine, we'll try it again. But the problem is not the tight side now, but the opposite side that refuses to hold her head up. Cue the deep discouragement.
To top it all off, we went to the GI doctor (sorry for all the boring doctor reports) to finally put the new button in and he looked at her and said, "Her neck looks worse!" Are you serious? It's not that I thought it was getting better, but worse?! Seriously, it took everything in me not to burst out crying. And I told him that, too!
Her occupational therapist thinks that Maggie's left neck muscle is completely paralyzed due to nerve damage or just from not being used at all. We watch her and she never uses that left SCM muscle to try and lift her head now - it's like her brain is doesn't even know it's there.
So...we are going to try the last few things we know to do and all the things we didn't want to do because it's painful. First, we are going electronic stimulation to zap the weak muscle to see if we can "jump start" it. No one thinks this treatment really works, but her therapist and I are desperate and we are going to start tomorrow. Later the neurologist can try more painful nerve tests. Even though her opthamologist ruled out eye problems as a cause, I getting a second opinion on that this week.
After that, I just don't know what we are going to do. I am scared, discouraged, angry, frustrated, and just plain exhausted from dealing with it. Combined with the return of the vomiting, I think Justin is starting to worry about my sanity!
How hard it is for me as a perfectionist to look at Maggie's pictures from Easter one year ago and compare them with this year and realize that her neck is in the exact same angle. What was all this torture for? I wonder. This is so awful, but honestly it is so hard for me to look at pictures of Maggie because it reminds me that I have failed in this regard. "What could I have done differently?" I keep asking myself.. Those questions are never really useful, but they still taunt me at four in the morning after I get up to clean up her vomit, wipe her face, and adjust her brace.
"Her neck won't be like that forever," people say. "It will get better one day." I believe that, and I appreciate that positive outlook, I really do. But how is it going to get better? While I am praying fervently that she will just start holding her head up one day, most likely it is going to be a lot of hard work to get there. It is going to be me trekking Maggie to dozens of doctors and therapists, spending hours researching treatments, and countless phone calls fighting insurance claims. It is going to be me torturing her with stretching five times a day and forcing her into an uncomfortable brace 16 hours a day. It is a daunting task before me, and that's why I am praying for just a small sign that her muscles are working properly or will work properly. If I could just see her start trying to use that muscle I would be re-energized and full of hope again.
I know it seems so silly to pray for someone's neck; it does seem a little shallow or cosmetic especially when I consider how much worse it could have been with Maggie. But I truly believe that Maggie is in pain from her neck like that all of the time. I don't buy the theory that she's used to it. Try holding your neck like that for five minutes and you will have a new appreciation for my baby's endurance! Furthermore, I truly believe we are stressing her out and hurting her with all the stretching and strengthening. I feel I just can't torture her anymore (especially after holding her down while they changed out her button today and she started bleeding everywhere!). It's just not natural as a mother to constantly be doing things that makes your baby scream, writhe, and gag.
I just pray for some encouragement or just tiny bit of improvement in Maggie soon. I just need something to keep going...