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Wednesday, July 9, 2008

Request for prayers

Yesterday was one of the longest days of our life. We had our appointments down at UCSF starting at 8am and leaving our last one after 4pm. We met with a number of different doctors, specialists, and surgeons. We went down there hoping they would send us away with a confusion of why we were even referred there in the first place. But, it turns out our situation is much more serious than we thought.

It was confirmed through an ultrasound and an echocardiogram that the Twin to Twin Transfusion Syndrome had progressed to a Stage 3, which probably doesn't hold a lot of meaning for most of you. But, basically it's the most serious the syndrome can get while still having good chances of the babies surviving it with laser surgery. Had we waited any longer, it probably would have been too late to do anything.

To give a few more specifics, our donor baby (the one with less fluid) is starting to show signs of stress in her kidneys, and her bladder isn't visible at all (meaning she isn't getting the nourishment she needs). Our recipient baby (the one with more fluid) is having to work over-time to process all the additional fluid, causing additional stress on her heart. She is the one that the doctors are more concerned about right now.

Fortunately there is a laser surgery that is now available to try to correct the problem in the babies' placenta. The surgery has only been in existence for about 20 years and is only performed at a handful of hospitals, UCSF being one of them. The surgery is pretty straight-forward, though with obvious risks involved, just like any surgery. They will go into my abdomen with a small laser instrument about the size of a drinking straw and with the help of an ultrasound they will identify the blood vessels in the shared placenta that are causing the discordance in blood flow between the two babies. Using the laser, they will cut off those blood vessels, leaving the babies with vessels that flow equally between them.

So, we will drive back down to UCSF tonight. They will check me in around 8pm and get me all prepped so that they can perform the surgery first thing Thursday morning. My actual time slot isn't until 1pm, but they are hoping to get to me much earlier than that. The surgery itself will be performed by Dr. Lee and should last an hour or so, after which they will monitor me and the babies really closely in the hospital. Friday morning they will do another ultrasound to see how things are going. Depending on what they learn from that, I'll either be discharged Friday afternoon or Saturday sometime.

While we have our concerns about going through with the surgery, we feel like the risks are much less scary than just sitting back and waiting to see what happens. Plus, the fact that our babies both continue to grow at the same rate, even with the present problem, is a really good sign. My placenta is also in a posterior position, which makes the surgery a little easier to perform. So, yes, we have our fears... BUT, we are also still very hopeful.

And, we are so grateful. We have been overwhelmed with so much love and support. We have felt strength in the midst of this storm that is not coming from our own reserve. We are being blessed with the strength and the courage that we lack, and know that comes as a result of the Savior's atonement. We are grateful to have each other, to have the perspective of the gospel, to have the most incredible family and friends who have stayed by our sides through all that we've faced.

Oh, and for the last few weeks we have been doing lots of talking about names for our little girls. We had initially planned on keeping that information to ourselves until they were born, but have decided now is a good time to share. Besides liking the names, we also found the meanings behind their names to be very fitting.

Baby A (our donor twin) is Elliana. It's a hebrew name, meaning "God has answered." She is one part of a double blessing in answer to years of pleading and prayer to start our family.

Baby B (our recipient twin) is Emmaline. I don't remember the origin, but it means "work." She is our little worker, doing double-time to keep them both alive.

We love our little girls so much! They are already teaching us so much about love, about courage, about the will to survive. They are our little fighters... and we are ready to fight with them. In the meantime, please know how deeply grateful we feel for the prayers being offered for us and our little girls. 

17 comments:

Amy said...

Wow. Lots of prayers coming to the four of you. I hope and pray that E & E come out of the surgery with the exact results you're looking for.
Also, praise God that you followed your gut instinct to switch doctors. Moms know best.
If you have any doubts about the surgery, just remember that.
Lots of love, luck, and prayers!
Oh, and their names are great!

The 311 Boys Mom said...

I saw you on Amy's site & I will pray for you........I love hte names, they are beautiful.

I read another, & she has a relationship with GOD I can only dream of & I also asked her to pray....

good job on the Dr. switch, its your mom instincts......I did that & that's how we found out (EARLY) my son had cancer.....had I waited liek they all originally told me to he'd of had a 20% survial....he's now almost 5 years off treatment & plays HS hockey & a pain in my BEHIND, on a regular basis...& I couldn't' be happier!

catching things early is often the best thing that can happen!!!

Angie Smith said...

Just wanted to let you know that i came by and i am praying for you. i can't fit my whole story here, but if you are interested, you can find me at www.audreycaroline.blogspot.com. someone posted to me today and asked for me to pray for you, and i am. i also have twin daughers (abby and ellie...i was in the hospital for 10 weeks fighting for them), a 2 year old (sarah kate) and a baby i lost on april 7th, the day she was born (audrey caroline). i actually just noticed the woman i was talking about...she is the second comment here, and i am the one with the relationship with GOD, i think:) how cool. anyway, i am here, and i am praying. feel free to email if i can help at all...angelac519@gmail.com.

Mindy said...

I will pray for you and your baby girls... I got your blog address from Amy. You have been guided so far, and I know Heavenly Father will continue to guide you in what is best for your babies!

Janell Fredericks said...

Prayers coming your way from one twin mother to another...

Familia Fowler said...

We love you guys! Our prayers are with you 4. (Reagan remembered you in her's too!)

Lindsey said...

You certainly have our prayers. We have nothing but hope and best wishes for you, Marc and your two little girls.

Elaine said...

M & M, E & E, I am praying for the four of you. Tomorrow I will also be lifting you up and praying for the doctors. May God surround you with peace that passes all understanding and may He, who is the Creator of everything, work through the doctors to bring the blood and fluid flow to the proper balance. God bless you and keep you and may you sleep peacefully tonight.

Heidi said...

Wow! I just got your email and then I checked out your blog for the first time! You are certainly going through some difficult things! I wish you ALL of the VERY BEST!!!!! Good luck with your surgery! I know you will be blessed along with those sweet little girls!

brossettelewis said...

Megan, Im not even through your 1st paragraph and am crying. I was there. My boys had TTTS. They are both amazing little men (10mo). Please visit my blog if you want. April of 07 is the whole TTTS pregnancy peri visit by peri visit (plus I have links to other TTTS moms). My first visit was stage 3 TTTS. I had amnio reductions, a septostomy, attempted the laser twice, and was in L&D many times stopping labor. I am so sorry you are 'joining the club' but please do not lose hope.

My prayers (and tears) are with you. Please email me if you would like brossettelewis@gmail.com. If your peri hasn't told you about fetalhope.com, it is also a great resource.

ok, back to read the rest...

Michelle said...

praying!

Allyson said...

Best wishes and prayers coming to you from friends in Maine.

Ally, Hallee & Madeline
Bangor, Maine

KieraAnne said...

I hope everything goes well with the surgery and both of your girls come out beautiful and healthy. I like the names...I have a neice named Emmaline, though she spells it differently. Good luck!

Heffalump said...

Many prayers have been and are being said for you both and for your girls...

Carrot Jello said...

Thinking and praying for you and the babies.

Tori :) said...

I LOVE the names. Perfect!
And you (and your little family!) are in my prayers.

Came here from Carrot's. :)

Sarah A. said...

I hope and pray that everything goes well for you and your babies!