Ellie at 24 Weeks

Obviously I have passed on my unlove of mornings to my children. Will sleeps in late & Ellie kept yawning this morning! The picture above captured a yawn.

This was actually really good to see as previously it has seemed (to me at least) that she hasn't opened & shut her mouth much. Today, she yawned a lot! This is good for breathing exercises I think.

Ellie - a profile shot

News:

Once again, there is good news and there is bad news and there is mostly "unknown" news from today's ultrasounds.

The good incredible news is that there does not appear to be any more swelling in her head!!! We couldn't see the back of her neck so we can't say for 100% sure but what we had previously seen was not visible today!!! Thank you, Father! My doctor shared that the swelling had made him concerned about potential heart failure in the womb so we are so very thankful that this critical issue seems to be resolved (hopefully.)

Also, we did not see the masses on her brain!!!

We did, however, see lots of masses on her liver. We had not seen these before although Boston reported finding them on the liver via my fetal mri. The assumption is not that they are new developments at this point but rather that they simply weren't visible via ultrasound until now. Not sure what they mean since we don't know what caused them.

There are still 2 (possibly 3 now- hard to tell his am) masses in the lining of her heart. They don't appear to be getting bigger but they are still there. We have a fetal echochardiogram scheduled for Dallas next week so I look forward to hearing what they say then.

She was able to move her right arm some. We don't know if she used her elbow or shoulder to get the movement but it was good to see that at least one of those joints is working partially.

We did not see any movement in her left arm - it remains "severely" affected. (Both arms/hands are affected with the joint issue -just hard to tell to what extent.) We did see some slight movement in her left leg. Again, not sure which joint - knee or hip- but at least she was trying. Her right remained "severely" fixed. Both feet are severely affected.

Having a child with limb absences yet who has full function of what he does have makes this seem so bizarre to me. It's just wild to think that now I have one with full limbs but such limited function!

Though she is not able to punch and jab and kick me - she is moving lots more lately. She does little flutters and rolls. I basically have to be really concentrating and still to feel these movements but I am so very thankful for them! I reported this to them this morning and it was confirmed in the ultrasounds - her "tone" is good as she is able to move her trunk and head and neck quite well. It's just that her limbs are pretty much fixed in position.

Some great news today ie the swelling. Some confirmed news ie the joints/tendons. Lots of unknown news: the masses in her heart and liver now and whether or not the joint thing is caused by her central nervous system.

My doctor this morning told me that he thinks something happened to her - not viral because we have tested for that - but something within her development I guess - which was "systemic" meaning that it is not isolated. We are seeing the effects of this unknown mystery in several organs and her joints. We have no idea what it is. God knows. But for now, He is not revealing it to us.

He wants to continue seeing her via ultrasound weekly. In fact, I return on Tuesday for a big measuring ultrasound (today we looked at everything for an hour- Tuesday we will look & measure). Then on Wednesday, Will & I head to Dallas where he has an alignment appointment for his new prosthetics & I have a fetal echochardiogram & high level ultrasound with a perinatologist for Ellie. Hopefully, between both doctors' brains and experiences, they will be able to come up with some sort of diagnosis for Ellie.

I asked about his confidence level today. During my pregnancy with Will, he was very cautious but, barring unforseen complications, was pretty confident that (1) Will could survive & thrive with a high quality of life, (2) there were no known cognitive affects of Will's syndrome so we weren't concerned about brain issues, & (3) no organs were affected- just his limbs.

When asked today about his confidence for (1) Ellie to live & (2) Ellie to have a quality of life, he just said it was unknown. He can't tell me what to expect and prepare for because he simply doesn't know what is going on with her.

I hate not having a plan. I want to know if I can plan on holding her after her birth or if I should be prepared to not see her for awhile. I want to know if she will require surgeries and if so- when & on what & by whom. I want to meet & interview those surgeons now - while I still have some rational part of my brain working. I don't want to be stuck in a hospital bed recovering while others make decisions for her. If she can't survive, I don't want her taken away from us for even one minute to be evaluated & assessed. I want every minute I get. I'm terrified of her dying in someone else's arms - or worse - on some exam bed alone. Hopefully, our Dallas doctor who will help coordinate her delivery will be able to better prepare me for what in the world her birth might look like regarding these issues. He is very sensitive (or was with Will's birth) so I know he will do everything in his power to both save her life and give us time with her.

I want to have hope but don't know what I can realistically hope for. Twice this week, two separate people have told me that perhaps I should "hope for the best & prepare for the worst."

I suppose that is good advice but it kind of makes things feel more real.

It's the not knowing that is so hard for me.

I am so thankful that the critical issue of the edema doesn't appear to be a problem right now. I am so thankful to not see the masses in her brain. But, I have to admit, I am holding these things loosely. I am guarded in my hope. Because there are still lots of unknowns and possibilities out there. I still have more appointments and they might discover something new. So I am just holding everything right now very loosely.

Thanks for praying this morning.