Blindsided, from Tuesday, March 31

How many times can I say, "This has been the hardest day of my life?" I know there will be many. I was never promised a life free from suffering but rather assured that suffering would come, and I can honestly say I never knew the true meaning of the word until four months ago. In November, we watched Emma suffer through a difficult and painful operation, and at that time I thought it was the most difficult thing I'd ever done--to see my child suffer. But through God's grace, we got through it and I saw my faith increase. Praise Him! In February, we found out the job search at Anderson had been cancelled. We were devastated by the news that the one really good job opportunity we had was gone. We thought, "Okay, so this is what it means to truly trust God." We felt like we'd always trusted Him before, but it was much easier when we could see this really good option out there for God to use to meet our needs. Now we know that only He can meet our true needs.

This brings me to today-- we've had so many ups and downs in just three weeks, my head is spinning. Last week we were soaring high with the news that our battle with TTTS might be nearing a conclusion. Both Anne-Claire and Elise showed great signs that the progression of TTTS had stalled. We went into the tests today with high hopes that the girls would remain stable and we'd be sent back to Indianapolis for follow-up. I was extremely anxious about the possibility of hospitalization for more frequent monitoring of the girls until birth, which would likely be early, but had already begun feeling the peace that passes understanding as I thought through how my family would continue to be cared for in my absence.

This morning, as noted in my early-morning status update, began with a lot of unexplained anxiety on my part. I sought out prayer and began meditating on the verse that has been at the forefront of my mind through all this, "When my anxieties multiply within me, thy consolations delight my soul." I continued to feel physically ill through most of the ride to Cincinnati. Upon arriving promptly at 9am, we were made to wait until nearly 10 for the ultrasound. The waiting increased my anxiety but I continued praying and meditating on the Word. The ultrasound couldn't have gone better. Fluid levels were equalized: Anne-Claire at 4.9cm and Elise at 4.4cm. Bladders were easily viewed in both girls and both had grown. They were still discordant in size but it had remained 36%, which is not as good as going down but way better than going up. Anne-Claire weighed 738 grams or about 1 1/2 pounds. Elise is still quite small at only 470 grams, so she's not quite a pound yet. Amazingly, the formerly persistent absent blood flow in Elise's cord was now only intermittently absent, another great sign. Finally, my cervix was a nice 3.8 cm, which is an excellent indication that I was not in danger of imminent premature labor. Chris and I were quite pleased with all the good measurements. Unfortunately, we were knocked off balance for the first time with the entrance of a brand new, never-before-seen maternal fetal specialist.

She told us that while all the signs did in fact look good, we had crossed an important threshold--viability--and this changed the way we should be looking at things. At 24 weeks gestation, babies are considered viable outside the womb by the medical community. Apparently, if I'd gone into premature labor before this week and delivered, little would have been done to save the girls. They had reached the magic number of 24 weeks and were now worthy of medical intervention to save their lives should they be born today. The doctor thought I should be admitted to the hospital in Cincinnati for steroid injections and close monitoring so the girls could be delivered at the first sign of distress. This was the first time anyone in Cincinnati had ever mentioned this as a possibility. We were confused and immediately wanted to talk to one of the other doctors who knew more about our situation than this new doctor who admittedly knew very little. She told us she would talk to Dr. Van Hook, who'd we'd been seeing since this started three weeks ago and would let us know what the plan was. I called my maternal fetal specialist in Indianapolis to give her a heads up because we wanted to travel to Indy for hospitalization if at all possible. She said not to worry but to have the doctors call her after all the tests were over. We praised God for the good news, knowing that if I was hospitalized He would take care of all the details.

We went on to our ECHO, somewhat confused but still thinking the new doctors reaction probably was due largly to her unfamiliarity with our situation. We joked in the waiting room that today was the day for changes and that we'd probably end up with a different radiologist than the one we'd had for all of our previous ECHOS. Sure enough, a different woman came out to greet us. Chris and I shared a look but said nothing. The radiologist is usually quiet during the ECHO, silently doing her job, and we usually have to wait for results until we meet with the surgeon later. One comment this radiologist made stuck with me. She told a visiting doctor from China who was observing that she hadn't worked too hard to get one measurement because everything else was looking so good and that the wrong angle can distort the numbers that are fed into different indeces and formulas. We left there with our hope revived and with a plan to ask to be sent to Indy if hospitalization was recommended. We'd discussed different possibilities of care for the girls and knew that the Body would be there for us like they have been thus far.

Unfortunately, our waiting continued as our 1:30pm appointment time came and went. At 2:30, I asked if the receptionist had any idea how much longer it would be and she said they were waiting for the ECHO report. That sound odd to us because that report usually gets sent in minutes. I don't know how much longer we waited for Dr. Lim because I made no note of the time when he entered--Largely, because he knocked me off my chair with his first statement, "I like to cut right to the chase. It's time to talk about surgery." What? But all our measurements have been wonderful. The techs had even gotten the elusive ductus venosus after 2 weeks of trying unsuccessfully. Dr. Lim went right past all the good news straight to the heart of the matter--Anne-Claire's. The Tei index is a measurement of heart performance, or heart failiure. Anne-Claire's right ventricle on the Thursday after my amnioreduction was .49, which is 1/100th higher than normal. At that time, Dr. Lim thought the amount to be sufficiently insignificant to deem the AR a failure. The next Tuesday, her right ventricle went down to .46 while the left ventricle went up but remained within normal range. Today, her right ventricle was .56 and her left was .53, both measurements considered well outside normal. We had moved from stage 3A TTTS to the cusp between 3B and 3C. Stage 4 means the baby's heart is in serious failure and they baby has hydrops, swelling of the tissues. Stage 5 is death. Dr. Lim could not tell us how long it might take Anne-Claire to move from 3C to 4 and then to 5.

I immediately questioned the ECHO based on the radiologists comment about bad angles influencing numbers and measurements. Dr. Lim did not believe such to be the case but did give us the option of waiting and repeating the ECHO on Friday or Monday. He couldn't tell us for sure that Anne-Claire could wait that long but felt comfortable enough to allow it. So these are our options: do nothing and see how far we can get before losing a baby in utero or delivering early, repeat the ECHO on Friday and surgery if necessary on Monday, surgery on Thursday, or deliver the babies now. Our first step was for me to get a steroid injection to improve the girls lung development in the event we deliver soon. We talked about the surgery and the huge risks to Elise because of her marginal share of the placenta. They could begin the surgery, map out the connections, see what share she has, and not move forward with photocoagulating the connections. None of the options seems very promising and we're just not sure what we should do. My gut reaction is that for right now the girls appear healthy and happy and the thought of going to surgery and quite possibly ending Elise's life as a result makes me ill.

I am struggling to find hope right now and cannot see past losing one or both of our girls. All I can do is cry out to the Father for His strength b/c I am so very weak right now. I know that my only hope is in Christ and that no medical procedure or doctor can do what He can do. I'm so scared. I need more faith.