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Saturday, July 30, 2011

Still doing fine

Have I mentioned before that sometimes progress is frustrating to me? It is. I like to understand things. I want to know why things are the way they are and why they work or don't work. I like to have reasons. But you know what? When it comes to Raya, I don't usually (EVER) get what I want.
When things started to go wrong with her shortly after she was born, I wanted to know why. I wanted to know why she cried for hours at a time every evening no matter what we did for her. I wanted to know why, even though I had narrowed my diet down to 8 mild foods (try getting enough calories to breastfeed from 8 foods!), she still couldn't keep anything down. I wanted to know why the spitting up turned into forceful projectile vomiting. For 18 months now, I have wanted to know why all these tests keep coming back normal or near normal when it is quite obvious that there is something wrong. 
And now, to add to my list of unrealistic demands that will most likely never be met, I want to know why my child who has needed to be fed directly into her small intestine for the past 9 1/2 months can suddenly tolerate getting all 900 of her formula calories and all 5 ounces of her pedialyte fed into her stomach.
Maybe it's a little ungrateful of me to feel that way. It probably is. I'm not ungrateful though, I'm SO glad that we're not cleaning up massive amounts of vomit several times a day anymore, with or without blood in it. I'm grateful that I don't have to sit there and hold a towel or a bowl in front of her while her whole head turns beet red as she throws up until her stomach is empty and then dry heaves for 5 minutes at a time. I'm thrilled beyond belief that she will put food in her mouth without gagging & vomiting now. So yes, I really am grateful. Often though, that gratitude that comes each time we make a step forward is accompanied by the frustration of not understanding why or how we are taking that step. I think that because of how hard things were the first 18 months of her life, a part of me feels a need to have to do something more in order to resolve things. Can it really be so easy that all we have to do is wait this out and her body will take care of things on its own?
As I was laying awake in bed last night (I took an excederin migraine for the most horrible headache I've ever experienced and then couldn't sleep after) Raya got restless and started crying in her sleep again. I could tell that her stomach was bothering her and I found myself kind of wanting her to throw up so she would feel better. That thought was immediately followed by, "What in the world is wrong with me that I'm wishing my kid would throw up?!?" Really, I just wanted her to feel better but she never threw up. She cried in her sleep 4 or 5 times before I fell asleep but she didn't wake up so I didn't bother her. Hopefully her body will continue to adjust and she'll be more comfortable while she's sleeping.
There. It feels good to have that off my chest. Things really have gone surprisingly well considering that this is a sudden and drastic change that should have been a big shock to her system. She has a history of not tolerating change well, which was why her doctor warned me that we may be in for a rough weekend and offered to wait until Monday to change the tube in case we had to put the GJ back in. So far, things are continuing in the right direction though. The most difficult thing so far is that we had to decrease the rate she's being fed at to 60ml/hour, so now instead of being on the pump for 14 hours a day, she's on it for 17.5. It's a giant pain in the rear because she hates it as much as we do. When it's 114 degrees outside like it was today, all she does is sweat the whole time it's on in spite of the ice pack inside the backpack.
She's still not nibbling (eating is too strong of a word) as much as she was before we went to Idaho but she'll get there. She had a make-up PT session yesterday and OH MY GOODNESS it was the absolute WORST session she's ever had. Worse than the first session we had with this PT when all Raya did was cry when Jessica tried to touch her. The only difference between that session and yesterday's session was that Raya is bigger and stronger now and she doesn't cry herself into vomiting anymore (knock on wood). All she did the whole time we were there was scream and cry and try to cling to me. I even had to leave the room at one point just so her PT could stretch her a little. If there's one thing we learned from taking a 2 week long trip, it's that Raya really does benefit from all of her therapies! We can't wait to see her OT on Tuesday. Hopefully she can get some good sensory work in and Raya will start returning to her normal little self.


  1. My daughter has a feeding tube and won't eat anything by mouth (she just turned a year old on the 19th). i hope that she will all of a sudden start eating one day like your daughter. when she does, i too will wonder why? it makes complete sense to ask "why?" i've been asking that question every day for a year now for a number of questions. like your daughter, every test they've done on mine has come back negative. it gets to the point where you want something to come back not positive. as a mother, i don't want anything to be wrong with her, but if we know what she has, then we can deal with how to treat it. hopefully, everything will come back negative and one day she will start to enjoy eating.
    i also have a daughter who is almost 5 and she's always been an incredibly good eater and never had any health issues, not even an ear infection. i never knew this world of failure to thrive, feeding tubes, test after test, world existed. it's amazing how you adapt to a new "normal" of living with projectile vomitting, wanting your daughter to throw up so she feels better (we've been there too), all of this becomes your daily lifestyle.
    thank you for sharing your story, it gives me a glimmer of hope that some day my daughter too will start to all of a sudden start eating. when she does, i will be happy (to say the least), but i too will ask "why?"

  2. why? because. because why? because i said so. i've given up on the 'why? why my baby?' and just accepted that is was a lesson to learn. why? because i needed to slow down, to get priorities right and maybe to really turn it over to a higher power, God (a name/idea i'm a little uncomfortable with given my lack of formal religious upbringing) or fate (better comfort level there, though i accept that God and fate maybe one in the same, or not. i have complicated beliefs right now)and truly live the idea that there is a plan, things happen for a reason (even if i don't like the reason, or the reason doesn't reveal itself until later) and that i am strong enough to handle this, that's why it's been given to me (though i also belive anyone else put in this situation would be strong enough to handle it, you just do. it becomes the new normal.) a little self-serving, pat on the back, probably. and i am obviously preaching to the choir, but turning it over is a very new concept for me. i don't turn it all over, but when it comes to my kid and the amazing, fortunate things that have occurred, i can't help but thank the universe and everything inside and out for the luck/blessings we have received. long answer, but it's the response i give to myself when i start to question why. though i'd really love to know why his little gut did what it did (or rather didn't do) for two weeks in the hospital and why he had to hurt.
    hugs brandis. you are awesome. raya is awesome. i hope the switch continues to go well and she gets back into her pre-trip routine and asks for 'bacon, please.' :)


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