Team meeting with Fetal Care Center doctors

The second day of diagnostics at the Fetal Care Center was an emotional roller coaster, which is why I'm only now writing this post. I was just too exhausted, physically and emotionally. The verse that I meditated on yesterday was from Psalms 94: "When my anxieties multiply within me, your consolations delight my soul." Our first stop was with a nurse midwife who took my medical history and did a short exam. She told me that my uterus is abnormally large for 21 weeks because of all the amniotic fluid in Anne-Claire's sac. We mentioned to her that we'd been encouraged the day before by the ultrasound and the girls' strong heartbeats. She told us that sick babies can also have normal heartbeats, which, needless to say, was less than encouraging. She also ordered an EKG for me because I would need one before surgery. It felt like she believed surgery was a foregone conclusion for us.

We left there for cardiology completely deflated. During the ECHO, a nurse from cardiology came in to talk to us, and she told us that strong heartbeats should be an encouragement to us. That made us feel a little better. After the ECHO, the cardiologist came in to give us his initial assessment and his words gave us another glimmer of hope. He said that he couldn't believe our girls had TTTS b/c their hearts were both completely normal. In TTTS, the recipient twin (Anne-Claire) suffers from heart failure b/c of the increased volume of blood flow. He said she wasn't showing any of the telltale signs that her heart was working any harder than it ought. He also said that our girls were both so active that he had a hard time believing they had TTTS. Donor babies (Elise) that he sees usually have no fluid and can't move at all. They are literally "saran wrapped" to the side of the womb by lack of fluid. He said Elise was doing flips and moving so much she did not look like a typical "stuck twin." Even though Chris warned me against putting my hope in what the cardiologist said without all the evidence, I'm a woman and I couldn't help myself. I allowed myself to believe that maybe they didn't have TTTS at all.

Next came the big moment--the team meeting with the fetal surgeon and director of the center, Dr. Crombleholme, and the maternal fetal specialist, Dr. Van Hook. The meeting started with Dr. Van Hook telling us that in every criteria for TTTS, our girls were just on the fringe of being abnormal. Anne-Claire's fluid was just below what would be considered way too much, and Elise's was just above what would be considered way too little. Their hearts did look normal but Anne-Claire's is right on the edge and will likely soon begin showing signs of damage. The MRI looked good--neither girl displaying what they would usually see with TTTS. All these things began giving us encouragement.

Then they started giving us the more negative results. Elise's cord shows signs of resistance to normal blood flow and her head is slightly larger than it ought to be in relation to her body. This is a sign that the placenta is not working well for her. Babies with placenta insufficiency (PI) begin to compensate for the lack of nutrition by devoting more to the head and brain b/c of its imporance and give less to the rest of the body. Her cord insertion is on the edge of the placenta instead of in a nice position toward the middle of the placenta.

Their diagnosis: Our girls are stage 3A TTTS with placenta insufficiency for Elise. Basically this means they have a very early stage of TTTS but with the added complication of PI. They told us this is good b/c it gives us more options. We are not being forced into a particular treatment. Unfortunately, because of the PI, some treatments are more dangerous for Elise. The statistics for babies like ours were not encouraging. 88 babies out of 100, or 50 sets of twins, who undergo amnio reduction will survive. Translation: some moms will have both babies survive, some will have one, and some will have none. Because of Elise's PI, surgery could be quite dangerous. If she happens to have a share of the placenta that is less than 20%, she will likely die. 80 babies out of 100, or 50 sets of twins, who undergo surgery while at stage 3 and with PI will survive. There is no treatment for PI. The only recommendation is complete bed rest and concentration on nutrition.

We left the meeting in a fog. It seemed that we were going to have to choose between our babies. Impossible. Our hearts cried out to God and I do believe He heard us. In thinking everything the doctors said over, we realized that amnio reduction did not put Elise at any greater risk of death. It is also less invasive and carries less risk of premature labor. The doctor told us they would know in about a week or so whether the amnio reduction was successful by doing another ECHO after a few days and a 2nd ECHO a few days later. If their hearts don't get worse, we can say we're in the 20% that do respond successfully to amnio reduction. If the procedure is not successful, then we'll have to move on to surgery. We're choosing to take this one step at a time and are focusing solely on the amnio reduction right now. I'm scheduled to go in for the procedure on Monday at 1pm in Cincinnati. We'll have to go back Thursday for the 1st ECHO and then back again on the following Monday.

We know that God has a plan for our girls and it is perfect. Regardless of what treatment we choose, He has them in His hands and has already determined their future. Right now our girls are doing well. They are both healthy and strong. In order to keep them that way for as long as possible I am going to go on bedrest and increasing my protein intake significantly. Our goal is to get them as far past viability (24 weeks) as possible and to deliver them before losing either one in the womb.

Please pray: 1) for strength and continued faith. It is very easy, especially for me, to slip into despair, and I don't want to do that;

2)that we will not put our hope in what the doctors say, in treatments, or in any bit of encouragment, but only in our Lord and Father;

3)that God would preserve the lives of our girls, that He would be merciful to us, and would allow us the testimony of their lives for His Glory;

4)for the details of getting to and from Cincinnati multiple times in a week and for bed rest to be possible for me;

5)for Emma and Charlotte who don't understand what's going on but each need to trust God as well.

Thank you all so much for your prayers. We wouldn't be able to stand under this burden without them. Thank you to everyone who's already been ministering to us. We love you.