Doctor Day Update

Thank you for your continued prayers & support of our family during the ups & downs of Ellie's pregnancy! Yesterday actually went really well - especially considering how so many of our appointments have gone in the last 10 weeks! (Wow - can you believe it's only been 10 weeks- feels like a lifetime to me!)

Here's the brief recap:

R- got his MRI results back... knee is fractured so he can't run or lift weights for 6 weeks. For a look at what happened to him - check out the fall captured on camera in the Florida post below! Thank goodness no surgery is needed! (This will buy him more time with me not in an asylum - I was threatening to check myself in if he needed surgery on top of everything else we are dealing with this summer.)

Will - had a great prosthetics appointment! He received his new prosthetics (3rd pair!) & loves them! His adjustment time was minimal this time - he took off running & is a very happy boy to have shoes (& legs) that fit now! Plus, they are his first pair of self-suspending legs meaning that they don't require the heavy neoprene sleeve that would go up to his mid-thigh & cause him to be so hot. Self-suspending legs only go up to his knees & should be much cooler for a hot TX summer! We are so excited for our big boy! Thank you, Wanda, for working so hard!

Ellie - whew, we are tired girls from a looooong day of appointments! I'll just recap each one:

• MRI- this was the easiest fetal MRI I've ever had (my third.) My husband had a work conflict so for the first time he wasn't with me (my mom came along instead) & he was disappointed to not be there for the first one I wasn't mean feisty to the person with me. I got to listen to Wizard of Oz (couldn't see it because my belly knocked the screen up!) so that really helped to distract me. Also, Ellie, who had hardly moved in 48 hours - so much so that I got really nervous one day this week & pulled out the doppler to check her heartbeat- was mad! The girl does not like MRIs but her mommy enjoys feeling her roll & move everywhere. She apparently holds a grudge- she moved all afternoon & was very active for her appointments - not something we hear a whole lot! Results of MRI: the neuro/radiologist felt like her brain has "developed appropriately" & structurally & functionally looks good for 28 weeks. She can't tell via MRI as to whether or not everything is working appropriately so she suggested a possible MRI at birth & an EEG to test CNS issues - after birth. She noticed a LACK of masses in Ellie's body!!! Praise the Lord! She also noticed some minor little things (a cyst, for instance) that can be surgically handled "easily" at birth.
• Fetal Echo cardiogram- I really like our cardiologist. She did the echo & felt like Ellie's heart is still looking structurally & functionally good - no leaks, no fluid or signs of swelling, no early signs of heart failure, etc. She began to make an odd face at the screen & really study something so I became nervous about her findings. Finally, she announced, "It's gone!" A mass that she had detailed in her previous report is no longer present in Ellie's heart! Thank you, God!!! She still has two other masses- in atypical locations but not affecting structure or function at this time. She wants to continue with another echo at 36 weeks and then at birth & also an EKG at birth. We were so happy to learn that there is a "missing mass!!!"
• High level ultrasound with perinatalogist- went well. No masses visible this week in Ellie's liver or stomach!!! There were some possible ones still in her abdomen but they are not significant right now. No swelling this week! Her tendon issues are still present but we were able to get a better idea to some degree regarding her wrists. It is hard to know how much of her legs are affected as she is in the normal fetal position (legs crossed - so cute!) So it is hard to tell how much flexibility she may have in her legs. We do know that, assuming she lives, she will require casting for 6-8 weeks post birth. (As the news regarding her ability to live was looking so good, I began to mentally design her first 4 sets of casts - thinking lots of pink & monograms! :))
• The doctor can not test for CNS issues prenatally. 50% of babies with the CNS system affected with this tendon issue do not survive. He doesn't think that Ellie's CNS is affected but we can't know with confidence until she is assessed and tested at birth.
• Then, he did something really fun! He decided to test her responses. She passed her breathing exercises immediately- good job, Ellie girl! (Yay for those steroids I took!) He began to poke in various places & we would watch the screen as she would try to poke him back. And then the most amazing thing- he reminded me that newborns will root & suckle for the breast when their cheeks are stroked. So, he located her cheek with the ultrasound machine & then he used his other hand to gently stroke her cheek through my belly. We watched in awe as she began rooting & then suckling! It was incredible. She even began to stick her tongue in & out - looking for milk & licking the inside of my belly. It was absolutely precious & amazing. What a testament to the value of life in the womb! The photo above is not the best photography - my camera phone on an ultrasound photo... but that's sweet Ellie Grace licking & looking for milk!
• Finally, we determined a general birth plan. At 36 weeks, I will head to the Dallas area to wait. They will check on Ellie (echo & ultrasound) at 36 weeks & plan for delivery no later than 38 weeks (stillborn risk goes up after that.) We will be assigned a "care team" who will meet one month prior. The team is composed of our perinatalogist (Dr. M.), ob (Dr. G.), cardiologist (Dr. E.), neurologist, radiologist (Dr. R.), neonatologist, counselor, & chaplain. (Wish we could just cross off the possible need for a chaplain.) We will fax our wishes for every possible scenario to Dr. M. sometime this month and when he assembles the team, he will brief them on our family, Ellie's case, & our wishes (everything from complex issues to things like when to bring Will in to meet Ellie, words we want used, creating an atmosphere of celebration, etc.) I so appreciate their efforts to give us the best possible birth environment and to have everyone on the same page. It makes me feel proactive.

All in all, it was a good appointment. I feel a sense of relief for a little while. I admit that while I am celebrating so much good news & am so thankful, I hold it loosely. Ellie has not been very predictable in this pregnancy and often changes her status quickly (the face swelling a month ago, the abdomen swelling 2 weeks ago, the masses moving locations). I suppose I feel guarded with my joy - I am dreaming more about a pirate playmate for Will, taking her out of the hospital, getting to know her personality, decorating her casts, etc., but I am guarded. I just know how quickly things have changed throughout the last 10 weeks. A part of me almost wishes I was 37 weeks now & that we could deliver her while things look good - before anything has time to change! But, I am oh so thankful I am not delivering her this week (remember at 22 weeks, my doctor was just hoping she would make it to 28 weeks- this week!) I am thankful for time with her that is all mine. I am thankful that no doctors are taking her away from me right now. I am thankful we aren't stuck in a hospital right now and that I still have time to enjoy her. I am constantly aware of how fragile life is, that I am not promised her future on earth. My doctor yesterday seemed much more hopeful than he was three weeks ago but he can not guarantee me her life. I know he will do everything in his power to bring her to my arms & he has said he is praying for her.

I have been studying hope & learning what it means to have hope even in hopeless situations. I'll post about that soon. I do have hope of having Ellie on this earth in my arms. After yesterday, I began to believe that maybe I can dream a little more beyond this pregnancy with her.

I said lots of "good job, Ellie girl" during the various appointments. My sweet, sweet girl - how honored I am to be her mommy.

(and tired.)

And I said it would be "brief." Ha - surely you knew the truth if you've followed our story for very long!

Thank you again for lifting us up. Thank you for praying for each of my children (& my husband's knee- bless MY heart.) Thank you for praying for life & for miracles. It's fun to watch miracles unfold before my eyes (the "missing" heart mass!) Thank you for praying for my emotional & mental energy. Thank you for investing in the lives of our children.

We are forever humbled & eternally grateful.

Now, I'm off to spend the day playing pirates & maybe fitting in some pink window shopping & dreaming.