Ellie News

I had another ultrasound this morning. Amazingly, Ellie has now surpassed Will in number of prenatal tests & ultrasounds. My husband recently mentioned going to med school just so he could be familiar with the doctor speak we hear all the time regarding our sweet children. I told him respectfully that we don't have time in our lives for him to add school to his demanding career (or our lifestyle.)

Basically, most of what our Boston doctors found no longer appears to be relevant. Our other doctors were able to poke huge holes in their theories and after more extensive testing in the last 3 weeks, it no longer appears to be a bowel issue at all. As of our ultrasound this morning, our doctor has informed us that he is unable to diagnose the baby at this time. There are so many issues going on & he hasn't been able to link anything together at this time.

The good news is that she no longer appears "sick." (She may be - not all the infectious disease results are in but so far, for the common ones, she is a negative.) She may have been sick at one point which is why we are seeing some of the effects we see now.

She still has masses (benign tumors) on her heart but they are not multiplying or growing. Today, we couldn't see any on her liver anymore. There are still some in her stomach and in her brain but they also do not appear to be multiplying or growing. This is excellent news. Our prayer is that they would disappear & be a non-issue.

She still has the tendon issue causing very limited mobility. It is impossible to tell prenatally if this is related to any brain issues - which are sometimes lethal. If she is able to survive, this will require extensive casting & therapies.

Every test that can be done prenatally to determine if she has anything lethal has come back negative. Praise the Lord. ( a few obscure ones are still out there- hopefully those results will be in soon.)

She still remains very medically fragile - with an unknown diagnosis and therefore, at this point, we can't create a treatment plan for her birth.

Our biggest issue right now for sweet Ellie Grace is swelling in her head. This is progressing fairly rapidly. Her brain is not swelling and we are not seeing the heart issues that normally accompany head swelling. Yet, she is still responding to something unknown with swelling. Our perinatologist told me today that he will do another ultrasound in 2 weeks when I reach 24 weeks pregnant. At 24 weeks, there is a slim chance of viability outside the womb. At that point, he will check the swelling & continue to monitor it every week.

He said our goal is to make it to 28 weeks. I show no signs of premature labor but rather, if the swelling progresses further, they may prefer to deliver the baby so that they can treat her rather than risk death inutero. If it were to continue at that point, they would send me to Dallas for hospital bed rest to keep an eye on Ellie's swelling & stress level and make delivery decisions as they feel necessary. I have a lot of projects to get done in the next 6 weeks. Ellie is about to see her mama do some serious multi-tasking.

He believes we need to deliver in Dallas so that we have access to the pediatric specialists there.

Please keep praying for our precious Ellie Grace. We are praying for miracles. We are also praying for time - that we can hold her and know her & raise her. God is only reminding us at this time that He is still God - regardless of our circumstances. He keeps pressing on my heart that I have now - I have today to enjoy my Ellie and so I am. I am suddenly doing all kinds of Mommy/daughter things with her. I believe He wants me to enjoy whatever time I get with her. I am praying it's a lifetime.

Thank you for walking alongside us & covering our sweet Ells in prayer.