NST- took an hour -once again. Ellie is getting her heart rate up but not the number of times she is supposed to within a fifteen minute time segment. At 45 minutes in, I chugged a little can of coke with a straw while laying on the table with the monitors on. About 10 minutes later, she reacted to the sugar and caffeine and her heart rate increased. Whew.
BPP - mostly good - her muscle tone & trunk movements were good and she did great on her breathing exercises today.
Amniotic Fluid - has increased & is now diagnosed as polyhydramnios. We've watched it increase over the past several weeks but it is now a potential problem - for both of us, I guess. The excessive fluid for Ellie enables her to move out of the ideal birthing position that she had previously been in. She is now in almost a sideways "C" shape. It would be like moving in the swimming pool. Hopefully, she can roll herself back into where she needs to be but this might make our decision for us regarding the possible need for a c-section.
Polyhydramnios can cause a mom to go into premature labor. My doctor is quite concerned about this possibility since we live about 6 hours away from the hospital where we plan on delivering. He does not want me here when I go into labor (no sufficient pediatric specialists nearby.) So, he will continue monitoring me closely and the fluid levels to determine when to send us to Dallas.
It is likely caused by Ellie having difficulty swallowing. We know, based on the fluid levels, that she is swallowing some - they are not extremely high- just a few points above normal at this point. That's good news I guess. We've known this was a strong possibility with her tendon/joint issue. It could be due to a GI tract complication or else her Central Nervous System. We can't confirm until further testing upon birth. Both of these have very serious complications associated with them (some are potentially fatal.) Both have been possible concerns since early April as we've researched some of Ellie's conditions - this feels like evidence or confirmation of those realities.
Today I feel depressed. I get tired of going to the doctor and feeling like I so often walk out discouraged. I'm tired of not having concrete answers or diagnoses. I'm tired of wondering what might happen next week and worrying about so many possible complications. I'm tired of researching. I keep a legal pad by my bed on which I'm often scribbling down thoughts, statistics, questions, etc. Today, while laying on the table, I actually read some things off my magic phone from the mayo clinic website to my doctor - reflecting back, I'm not sure he appreciated that! (Thankfully, he knows I am a research nut & laughs a lot with me as I come weekly with more issues and questions. He mentioned yesterday that in a case as bizarre as Ellie's, it offers me a sense of being in control... or as I like to say, "proactive." The way I figure, as much as all of these doctors love and care for each of my precious children, no one can put all of their time and energy into researching doctors, treatments, prognosis, etc like I can. So, I'm taking this role very actively.)
I'm overwhelmed at what her future looks like. I'm uncertain as to what I can hope and dream and plan for. I don't know how to pack or for how long. I'm tired of wondering each time I go to the doctor if this will be the time he sends me to Dallas - and of worrying each week about what it would take to suddenly get us packed and out the door for an indefinite amount of time. I feel overwhelmed, tired, and discouraged today. I know I do better when I don't think so long term... but with Ellie's treatment plans, I have to think rather long term as they are not available where we live. So, I have to be prepared to be gone for months. And that overwhelms me.
On a brighter note - Will finally felt Ellie (or Caroline Ellie Ellie Grace as he affectionately calls her) move today! I've longed for this moment and had almost resigned myself to the possibility that it would never happen. I'm so thankful.
He also randomly asks me throughout the day what Ellie is up to - is she moving, swimming, sleeping, eating, etc? So cute how he thinks about her often. Today, he asked if he could get back in my tummy. I said he couldn't now that he is a big boy. He asked if he could go in his Lovie's tummy. I said no and that he had never been in her tummy. He must have assumed I was making up a new rule so he said, "Can I go in there with a grownup?"
Love that big brother.
1 thoughts:
katie--i check your blog and pray for you and sweet ellie all the time. i am so sorry you are feeling overwhelmed today and i know you feel weary. i will continue praying for peace, rest, and miracles for ellie grace!!
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