Ellie News- claification

So I'm thinking I need to do a slight clarification. Perhaps my pollyana side got the best of me yesterday. Maybe it's my weepiness today. Not sure. Either way, based on some conversations I had today, I don't think I presented all of the information clearly yesterday in my post following our ultrasound.

We did get some very good news- namely that the benign tumors (not sure if they are even all the same thing but at least the heart ones appear to be benign tumors) are not multiplying or growing. This is GREAT news! (While "benign" is good - they are still masses in her organs - not good.) However, they are still there & still must be watched & measured. We also don't know exactly what they are or why they are in her heart, stomach, & brain. Therefore, we don't know if they may cause a problem for Ellie. That's unsettling news & scary news.

We did get most of our chromosome report & infectious disease report back. The GREAT news is that everything is normal. The other good news is that I do not have some rare, potentially life threatening disease. We don't have all the rare infectious diseases back yet so there are still some possibilities out there. The bad news is that we don't know why sweet Ellie became so sick about 6 weeks ago & what exactly is going on with her little body. Yes, she doesn't appear to be sick right now in terms of her organs being attacked - good news. But, the effects of whatever she has battled still remain on her body & are still very, very serious. Also, because the reports have so far all come in "normal" - we aren't able to diagnose her. Had certain things come back positive, we could have treated her inutero with drugs. As it is, our doctor, who is very wise & exxperienced & great at figuring out bizarre things, has been unable to diagnose her at this point. This is very unsettling news. Again, my heart doesn't know how to prepare.

The tendon/limb issue. While Will has an absence of limbs, he has full function with what he has. He operates on an age appropriate level & amazes us with his mobility - despite not having feet or full hands. Ellie has all of her limbs. Yet, she does not have mobility. We aren't sure what the treatments may involve but amputation may be a very likely decision we will face. I dread the idea of possibly having to ampuate my daughter's limbs. If she is able to survive all of the other challenges she faces, she will require 6 weeks of serial casting & very intensive therapies. Then, she can come for a period of time with therapies & then she will go back to Dallas another 6 week phase of casting. This cycle of serial casting & therapies will last through her teenage years. I dread the idea of putting her precious limbs in casts & not being able to soothe her when she is hurting & uncomfortable. My two year old Will is waking up nightly crying as his legs are hurting him (his prosthetics haven't fit for awhile - hence our frequent Dallas trips working on new ones.) It breaks my heart to put bandaids on him as if that will really make him feel better. It breaks my heart that I can't comfort him & take away his pain.
With Will, we were told there were no cognitive effects. For Ellie, we don't know. Sometimes, this is related to the central nervous system & when it is, it can be fatal or can involve brain damage. For Ellie, this issue is related to whatever made her sick in the first place - it's a very serious, sometimes lethal, effect of some unknown origin. Very unsettling & scary news- especially if it is lethal.

Finally, the swelling. At this point, it is very serious & probably our most critical issue. She is continuing to swell - which is a sign that she is battling something or responding to something negatively. It could lead to heart failure although we don't see signs of that at this time. It might be indicitative of fetal distress. If I were, say, 33 weeks pregnant, they would probably consider delivering her asap. However, I'm only 22 weeks pregnant. We have a long time to go (6 weeks) before she can be delivered - which means a long time for the swelling to continue rapidly progressing. This swelling can be fatal. It could be related to all sorts of things. Our specialist will start seeing me weekly to do ultrasounds beginning at 24 weeks to measure the swelling. If it continues, they might deliver her as early as 28 weeks - which means a very premature baby fighting for her life. A typical preemie at 28 weeks has all sorts of challenges. An already sick preemie with multiple organ & tissue issues, such as Ellie, at 28 weeks is extremely critically ill & literally would be fighting for her life.

So - yes, mostly relative good news yesterday. But with such serious bad news thrown in the mix, it kind of balances out to just "news." However, Ellie is far from in the clear for life. She is still extemely medically fragile. We don't know yet if she can survive. I am certainly not promised her life. If she survives, we don't know what her life looks like as far as quality of life. She still desperately needs prayers - as do our hearts as we walk this uncertain road. Thanks- K

Confessions post coming soon & at some point, when I have better computer access, some pictures of Sweet Will along with letters to Ellie. Stay tuned. But don't hold your breath - don't have that computer yet. :)