Wednesday, March 11, 2009

Our beautiful new daughters

Anne-Claire at 21 weeks

Elise at 21 weeks

The best thing about today was getting to see our beautiful babies--Anne-Claire and Elise--and getting to share it with Chris because he's had to miss all my other ultrasounds except for the one when we discovered two baby blobs. We drove up to the Castleton area to Maternal-Fetal Medicine to get a level 2 ultrasound because my OB was concerned that Elise was measuring smaller than Anne-Claire and had less amniotic fluid. We took Emma and Charlotte with us so they could see the babies, too. Overall they were very good, especially considering neither fell asleep until right before we arrived, and Charlotte missed lunch because of her nap, albeit a short one.

During the ultrasound, Anne-Claire and Elise were both very active and fun to watch. At one point the tech was trying to get some measurements of Elise, and Anne-Claire came over and got in the shot, like she was trying to get all the attention. I can already tell what her personality is going to be like. :) Getting all the measurements and pictures on two active babies took a long time and we were all tired and hungry by the time the doctor came in to take a look for herself. She was super nice and friendly and wrapped up her part of the exam quickly. Then she told us she would join us in the conference room to discuss what she'd seen.

While we waited for the doctor I noticed Charlotte's diaper was pretty full but thought I'd just wait until after we'd spoken to the doctor to change her. I had no idea that what she had to say would take a lot longer than expected, which resulted in Charlotte's diaper leaking all over my pants and me changing her on my lap in front of a slightly shocked specialist. But I especially welcomed the opportunity to be Charlotte's mommy after hearing all the doctor had to say.

This is really hard, but here goes. The doctor began by explaining to us that Anne-Claire and Elise share one placenta. They also have discordant sizes: Anne-Claire weighs 15 ounces and is in the 70th percentile for weight. Elise's weight puts her in the less than 3% category. The discordancy for the girls is 32%, which is apparently pretty high. Anne-Claire has a lot more amniotic fluid than Elise, and Elise has problems with blood flow through her cord--the doctor called it "absent blood flow." Several things could be causing all of this: intrauterine growth restriction, maternal infection early in gestation, chromosomal abnormalities, or twin-to-twin transfusion syndrome (TTTS).

Based on what she saw today, the doctor believes our girls have TTTS, which occurs at a rate of .1 to .9 per 1000 births. In TTTS, babies have one or more blood vessels in their shared placenta that connect their blood flow. One baby donates blood to the other, which causes her to receive less nutrition. In our case Elise is donating blood to Anne-Claire. Because she is the donor, Elise is smaller. Because she's receiving less nutrition, Elise is also producing less urine, which is why her amniotic fluid is so much less than Anne-Claire's. The obvious danger for Elise is death due to lack of adequate blood flow, nutrition, and fluid. The danger for Anne-Claire is death due to heart failure. Because of the higher than normal amount of amniotic fluid, her heart has to work harder to pump. TTTS if left untreated is very dangerous and almost always fatal. The positive things we were left with were that both girls are very active and have good, strong heartbeats. The doctor also said that there are some babies that come in with no amniotic fluid at all, so Elise is doing well having the fluid she's got.

Not exactly what we were expecting to hear when we drove up to Indy this afternoon. Before hearing this news, my worst-case scenario was mandatory bed rest. I would gladly welcome hospitalized bed rest at this point.

So, our obvious first question was what do we do now? The options were: do nothing (really, they actually give that as an option), serial amniotic fluid reduction, or laser fetal surgery. In serial anminotic fluid reduction, a needle would be inserted into my uterus to draw out fluid from Anne-Claire's sac in order to equalize the amount of fluid for both girls and to take pressure off of the restricted blood vessels in Elise's cord. The doctor couldn't say how often this procedure would be required but could be weekly. Laser fetal surgery actually closes off the vessels that are shared to stop Elise from transfusing her blood to Anne-Claire. The closest center that does this surgery is in Cincinnati at the Fetal Care Center. At this center, there is a 91.7% survival rate of one or both twins and 64% of both twins treated with fetoscopic laser surgery.

We decided to go to Cincinnati to see if they can help us there. The doctor today stressed that there is still a chance that our girls don't have TTTS, so the Fetal Care Center will conduct their own diagnostic tests: ultrasound, MRI, echocardiograms, and amniocentisis to confirm TTTS. Then if Anne-Claire and Elise have TTTS, we'll find out if we're even candidates for the surgery. If we're not, we'll come back to Indy for the amnioreduction therapy. The doctor we saw today is going to call Cincinnati first thing in the morning to get us an appointment. They will get us in as soon as possible, hopefully this week. They do all the diagnostics in one day so that if we're candidates for the surgery we can do it right away as well.

Needless to say, we're terrified. I don't even know how to put into words what I'm feeling right now but fear of losing one or both of our babies is literally weighing me down so heavily that I have no idea how I'm actually typing all this right now and not in a heap on the floor. We obviously covet your prayers not only for Anne-Claire and Elise but for our faith. It seems like all I do these days is say, "We're trusting God. He's in control. He's good. He only does what is best for us." But it is getting harder and harder every moment I turn around. Last night I lay in bed trying to figure out how I was going to get my cleaning and housework done and this morning a dear friend offered to come by in the morning to clean my house. I know that God hears my heart crying out so often and answers me over and over with love and gentleness. Even though He hears me and loves me, I'm so afraid He might take what is most precious and still expect love and obedience from me. Behold the handmaiden of the Lord.

10 comments:

Anonymous said...

I will call as soon as I think you might be awake. I am so sad to hear about this news. I love you. With a heavy heart that still will trust in our Lord, Barbara

Becky Pryor said...
This comment has been removed by the author.
Becky Pryor said...

I am praying for your little ones. Do you need a place to stay while in Cincy? I know lots of people there who would love to house you.
Love,
Becky Pryor
812-339-7023

Amanda said...

We are all praying for your sweet little girls and for you and Chris. Let me know if I can watch Emma and Charlotte for you while you go to Cincy. Love you!

Anonymous said...

Dear Michelle, I am praying for you dear sister. When our household is well and no longer contagious I would be most happy to bring a meal, run laundry or have the girls here to hang out while my girls work on schoolwork...

Yes, God does expect you to continue to love Him. This is one of those "severe mercies" where we have no human understanding of His purposes except that we are to give Him all glory. Praying for you to be able to faithfully glorify the Lord and to love your girls, all four of them!
Blessings, Kim

Unknown said...

We believe Lord, help our unbelief. Chris and Michelle, we are so sorry to hear this news, but please know that we are praying for you and love you and your little girls, all four of them.

Kim Jack said...

I am so sorry to hear this news and am praying for you all! May God be your strength and may you grow closer to Him as you go through this very difficult time! Please do not hestitate to ask if you need help with watching the girls, meals, housework, grocery shopping etc. Love, Kim

tommysmommy said...

Many hugs and prayers coming your way. Remember that the psalmists did their fair share of yelling at God and questioning Him. It's understandable - and I think God can take it, especially when you're handed a scary situation like this with your lovely girls. And yet, those same psalmists always came back to their faith, trust and belief. Strength and courage.

If your future holds further treatment in Castleton, Maternal Fetal Medicine is 5 minutes from our home. I work two minutes from there. I'll make sure Julie keeps us posted, and we're here to help however we can.

Tim Bayly said...

Dear Chris and Michelle,

Mary Lee and I are very sad at the distress you're both feeling, and the danger your daughters face. But God is wise, and most of our greatest blessings come through suffering--Christ's and ours.

We are praying for you, and love you much,

Tim/Mary Lee

Anne said...

Dear Michelle and Chris,

May the Lord strengthen you and give you courage and faith moment by moment. We continue to pray for you and your dear daughters.

With love,
Anne