We really thought we we clear. We thought C had turned the corner. We were actually past excited and into complacency.
Oh how wrong we were. So very, very, very wrong.
C started vomiting again. Lots and lots of vomiting. She tricked us into thinking she was over this nasty puking thing and that she really, really liked and wanted to eat, not just her solid (baby) foods but her formula as well. And from a bottle. A real bottle.
Again, so very, very wrong.
End of June, going into July C decided she just did not want to eat anymore. She refused bottles and then refused her solids as well. Frustration does not even begin to describe the overwhelming emotions pouring from me and Kevin. Just the week before we got the all clear, thumbs up from not one but two separate cardiologists. C looked great, her heart function was great, her arrhythmia in check, she was starting to slowly come up on her oxygen saturation level. She was gaining weight. We were encouraged.
And then she stopped eating.
And then she started vomiting everything we put down her.
We have seen cardiology 3 (yes 3) more times. Just to keep things interesting (and us on the verge of losing our collective jobs, not really, but only because we have awesome bosses) C has also been to the GI doctor, the pulmonologist and her pediatrician. All in the last 3 weeks. Yes, that is as many doctors appointments and days out of work as you think.
Can you guess what the collective answer has been from all these great minds...what for it...reflux.
No, I am not kidding.
How do you combine stress, anger, frustration and just in general pissed-offidness into one solid emotion? If you figure it out let me know because that is where we are.
Poor C just soldiers right through with a big ole goofy smile on her face. She is truly one happy baby. Us, not so much. We no longer give her bottles at all. She gets all her fluids through her tube. So much for using the tube for only supplemental feeding. We have been given a goal of 900 calories per day for her (approx 25% more than what a normal baby consumes at this stage). I cannot even tell you how lovely that has been trying to figure out just how in the world I am going to get this poor baby to eat 900 calories. Finally have it all figured out but the vomiting is still our enemy.
Not too sure what will happen from here. C's one cardiologist mentioned having to do another heart cath if she continues the vomiting. The major risk for her is aspiration. If she aspirates, she dies. Therefore, we really want to get the vomiting in check. Not too mention that she is losing all those vital calories she needs to thrive. Heartwise, C is doing very well right now. I still really think she is having an adverse reaction to her antibiotics. I have changed the form of her amoxicillian, she gets half a tab crushed up now versus the liquid suspension but she still vomits. When I took her off the amoxicillian for 2 weeks she still vomited but much less. When I mention the antibiotics being an issue all the doctors look at me as if I have grown 2 heads. Each one continues to tell me that the antibiotics are not the problem. C will be going back to cardiology this coming Tuesday. She is also seeing the allergist again for testing. Between these two appointments I am really hoping we can come up with some solution for her vomiting because really, the GI doctor, not so much help.
Yet, in the midst of all this, C is progressing beautifully development wise. She is sitting all by herself. Up on her hands and knees and rocking (crawling is thisclose). She laughs, claps, rolls over, scoots around, starting to pull up to standing, sleeps very well, says mama and dada in connection to me and Kevin and in generall looks and acts just like a normal baby. I know my biggest frustration comes from us truly being thisclose to a more normal life. I'm pretty sure most of my negativity today is coming from the inescapable vomit smell coming from my clothes (as C puked all over me at work, formula and yogurt...such a lovely eau de parfume) and my total lack of sleep. C still gets one of her anti-arrhythmia meds every 6 hours so I get up at 12:30 each night to give it to her (and her monitor and feeding pump continue to alarm). I asked Kevin the other day if he thought my insurance would finally cover at home help for us, just to give us a break at night...maybe if I pretended I was crazy they would listen more :)
Sorry I have not posted more pictures but I did post some on FB yesterday. Right now we are in party planning mode and of course you are all invited. C will turn 1 on August 19 and Kyle will be 7 (yes, 7) on September 3. Parties back to back, wooo hooo!
Thanks so much for all your good thoughts, positive energy and prayers!