Easter with our family

On Friday, April 10, we learned that I would be hospitalized for the duration of my pregnancy. My doctor, a Believer, allowed me to go home for Easter weekend to enjoy and celebrate with Chris and the girls. The weekend was wonderful, while, bittersweet at times because I was thinking about my upcoming hospitalization on Monday.

We decided that it was important to worship with our church family on Sunday, and I'm so glad we did. The deacons made sure a couch was available for me in the back of the church, which allowed me to stretch out and rest during the service. Although, I cried through much of the music, it ministered to my soul in ways that I'd missed since my bedrest began. I'd also been yearning to sit under teaching of the Word. I never knew how much I'd miss hearing God's Word preached until I became unable to attend church on Sundays. I also missed fellowship with other Believers. It is the tradition of our church to celebrate the resurrection of our Lord with a large Easter feast following the worship service. Unfortunately, I didn't think I would be up to staying for the luncheon, but the sweet ladies of the hospitality committee and Joe Rice, a beloved deacon, made sure we had a wonderful meal to take home to enjoy.

Emma and Charlotte looked beautiful in their new Easter dresses sent to them from Aunt Cindy, Uncle Scott, Trevor and Taylor. They had nice Easter baskets thanks to Aunt Julie who went shopping when I wasn't able to and had fun checking out their baskets of goodies. After lunch we took some fun pictures outside.

Emma and Charlotte picking flowers in our yard

Pretty Charlotte in her Easter dress with Emma putting flowers in her basket

Mama and her two big girls and two baby girls in her womb

Daddy with his big girls

After taking pics in our yard, we went to the Lehr's for an Easter egg hunt. The Chasteens were also there with their two, so it was a lot of fun. The girls had a blast finding eggs the dads hid in the backyard. Charlotte had more fun eating Skittles--she walked around with the candy in one hand and her basket in the other. Needless to say, she had no way of picking up any eggs that way, but eventually was coaxed into setting her Skittles down so she could find some pretty eggs. She also had a lot of fun sliding down the slide. I couldn't believe my baby was climbing up the ladder and sliding down a really fast slide all by herself. Thankfully, the dads stood close by in case she needed any assistance. Emma also enjoyed herself hunting eggs with her best friends Alice and Elissa. She was all about the candy! Here are some pics of the egg hunt.

Four beautiful egg hunters: Elissa, Charlotte, Alice, and Emma


Emma wearing the Easter outfit from Nanny and Papa

Charlotte hunting with Anna's help

Catching up (from April 3-10)

Since my last post we've been to see Dr. Dungy-Poythress in Indianapolis, back to Cincinnati for more testing, and back to Indy a couple more times. Every appointment has confirmed our decision to not move forward with fetal surgery. The girls have continued to look good in every ultrasound and ECHO we've had.


During our last visit to Cincinnati, Chris and I had a lot more confidence in what we wanted to do; that is, avoid surgery unless absolutely necessary. We also learned that we could ask for things from the medical staff and pretty much get what we asked for every time. Rather than chance getting a doctor who was completely unfamiliar with our case, we asked to see Dr. Jaekle, the doctor who did our amnioreduction. We were able to see him, and he told us again that we'd made the right decision. He was very happy with how the girls looked. He thought that Elise's cord was doing better then others had told us. Buoyed, we went on to our ECHO appointment.


We asked to have Regina conduct our ECHO. She was the sonographer who'd done all of our ECHOs except for the one with the elevated Tei index. Regina was available, so we were pleased to see her again. She told us, "I heard they tried to 'laser you' last week." We asked her if we could speak to a cardiologist after the ECHO, and again our request was honored. The cardiologist came in and told us that our ECHO looked good. We asked him about the Tei index and he told us that it can be affected by which sonographer does the exam. He said that even with the fluctuations of Anne-Claire's numbers he would consider them to all be stable. This week her numbers were lower than last. When we asked what the numbers were this week, he said it should tell us something that he didn't remember the specific numbers. We also asked about long term damage to Anne-Claire's heart because of TTTS. He said that babies with TTTS are usually not followed-up with further ECHOs by the Fetal Care Center, but that he never saw pediatric cardiology patients who had had TTTS in utero. We were encouraged by our conversation.


We went on to our meeting with the fetal surgeon, Dr. Crombleholme. While he agreed that our girls were stable, he did not go so far as to say they were doing well. He wanted us to return to Cincinnati once or twice more for ECHOs but said if surgery was not an option for us then we didn't have to return. We ultimately decided that surgery was not for us. We're prepared to wait and see how far we can get before the girls show signs of needing to be delivered and delivering them at that point. To that end, I am being admitted to the hospital for the duration of my pregnancy so that we can monitor the babies closely enough to catch anything life threatening that comes up.

We continue to trust God and know that He holds us and our girls in His hands. Hospitalization will be hard on all of us, but ultimately, is worth the precious gifts of Anne-Claire and Elise.

2nd opinion in Columbus, Thursday, April 2

During our 4 hour drive to Columbus, Dr. De Lia, called me and asked if I'd spoken to Dr. Jaekle, the MFM who'd done my amnioreduction but who we hadn't seen again since that day. I hadn't yet but Chris agreed that I should try to see what he thought as well. I called Dr. Jaekle and explained what had happened on Tuesday and our concerns about doing surgery when the girls are looking so good by every other indication. I asked him about the possibility that the equal fluid levels could be due to an inadvertent septostomy. He told me that he did not believe he'd poked a hole in the dividing membrane between the girls. He assured me that the other indicators the girls had did not look like the equalization was merely b/c of septostomy. He said if Elise was not getting enough blood flow she would not be producing urine as her full bladder indicated. He also confirmed that he would not move to surgery based on one number. The Tei index, he said, is imprecise and fuzzy. Different doctors figure and interpret and use it differently. He thought that we were absolutely making the right decision. He went on to say that he is by nature contrary so that the fact that he was agreeing with us meant that he really does think we're being wise and not just trying to make us feel good about our decision. So, now we had 2 doctors in agreement with us.

We went in for our appointment next and had another ultrasound. Again, fluid levels were good, bladders full in both girls, and no apparent physical changes in Anne-Claire's heart. Elise did have persistent absent flow in her cord, however. Dr. O'Shaughnessy came in and said something that no doctor had yet said. He said that God had created these girls and made them to share a placenta. The sharing of the placenta was in a way helping Elise and to disconnect her from Anne-Claire would leave her vulnerable. He agreed that her absent flow was largely due to placental insufficiency and that everything he saw indicated that little or no tranfusing was going on currently. He said that we were absolutely making the right decision. He said that if we went to surgery and lost Elise as a result we would find it very hard to not second-guess our decision. We would have lost her after making so much progress from the amnioreduction. He also said that when he figured the Tei index it was normal, but again, doctors figure it and interpret it differently. The bottom line is that the Tei is imprecise and currently the only measurement that caused the doctors in Cincinnati to suggest surgery. We're very glad we decided to wait and get another opinion--now 3 doctors are in agreement with us.

The best thing we could do now was to concentrate on my getting proper bedrest, which he defined as only getting up for the restroom and to shower. He emphasized that the next month is critical for the girls and that getting to 28 weeks (we're at 24 1/2) will be tough. He also told us that he would be praying for us and the girls, which meant more than all the medical information.

We are so thankful that God opened the doors for us to talk to some other smart people and the wisdom to realize we needed time to process and think before doing the surgery. We do not take any credit for this decision but rather give the Father praise for leading us in this and for keeping our girls in His hands. He's continuing to knit them together perfectly and knows exactly how many days they have. My prayer is that we will be allowed to love and hold them in our arms and to watch them grow into beautiful women of God.

Getting a new perspective, Wednesday, April 1

As I wrote my thoughts and feelings last night, I was in a very dark place. My dear friend, Barbara, noticed I was online and being that she was also up praying for us, she called me around 2am. She, through the Holy Spirit, talked with me about my fears and anxieties and spoke truth to me about God's goodness and care for us. After our conversation I was finally able to get some sleep. Early the next morning, I received a phone call from Dr. Julian De Lia, who pioneered the laser surgery that the doctors in Cincinnati want us to do. Dr. De Lia had spoken to me a couple of times and his warmth and care of our family came through on the phone each time. I told him everything that had happened in Cincy and he was quite at a loss. He couldn't understand why the doctors would be so interested in moving to the extreme measure of surgery based on one index when everything else looked so good. He encouraged me to get a 2nd opinion and made a call to a friend in Columbus, Ohio who is also a specialist in treating TTTS. The most important thing Dr. De Lia said to me, however, was that he would be praying for us and that he really does care for our girls and for us.

Within minutes of speaking to Dr. De Lia, a nurse from Columbus, OH called me. I told her about all our latest tests and she told me that I'd been able to give her all the information she needed. She said that in Columbus they use the Tei index as one piece of the larger picture. Based on everything else I'd told her about the girls' fluid, sizes, dopplers, etc., she said they looked really good. She said that where our girls are now is where they hope to get their patients. She was able to get us an appointment for the next day with Dr. O'Shaughnessy. We were excited to have the opportunity to get another doctor's opinion and hoped that it would be helpful and not muddy the waters. I spent the rest of the day coordinating getting all our records to Columbus.

In the afternoon, I was scheduled to get the 2nd dose of steroids to help the girls begin producing surfactant, which allows us to breathe normal air. I had to go to the Bloomington hospital for the injection. I thought it would be a quick trip up to L&D, so Chris and Charlotte waited in the car while Emma and I went up. Before giving me the injection the nurse checked my vitals and discovered that my heart rate was 141 bpm. She said that was quite elevated and that if we couldn't get it down, she'd have to admit me. So, Emma and I sat in a darkened room for 2 hours while the nurse checked me every 15 minutes to no avail. My heartrate was not going down. I had no way of contacting Chris in the car so security was going to have to go find him. Fortunately, he'd gotten sufficiently irritated by the wait to come inside to investigate. He figured with all the waiting that we usually have to do, that I was still waiting to get the injection. When he walked into the room and saw them hooking me up to monitors, I think it really scared him. They kept me for several more hours and finally released me at 10pm with my assurance that I would return if anything worsened. We didn't want to stay there b/c of our scheduled appointment in Columbus the next day.

Once at home, I called the doctors in Cincinnati who had prescribed procardia, a blood pressure medication that will help Anne-Claire's heart. Unfortunately, it can also cause me to have an elevated heart rate. The nurse told me to skip my morning dose and she'd call after talking to the docs. We went to bed hopeful again that tomorrow our desire to wait on surgery or avoid it altogether would be confirmed. I realized once again, that through God's strength and faithfulness, I can come out of a very dark time with faith and hope. Having experienced those moments gives me confidence that we'll continue to weather this challenging time not by our own strength, but His.

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.

2nd follow-up in Cincinnati

Yesterday was quite a day. We left our house around 5am to make our 8:30am ultrasound appointment, making most of the drive in the dark. I was so excited/nervous about the day, I don't think I slept a wink there. As soon as the U/S began we could see the girls both looked good, moving and causing problems for the poor sonographer. She checked their fluid levels and we were blown away! Elise actually had more fluid than Anne-Claire in the original measurement! I'd been praying for God to astonish the doctors and He did not disappoint. The final measurements for the deepest vertical pocket of fluid were 5.6cm for Anne-Claire and 5.0 for Elise. Great news! The hope with the amnioreduction was for the fluid levels to equalize and that's exactly what's happened. The dopplers all looked good except for the umbilical cord of Elise, which still shows absent flow. The maternal-fetal medicine specialist came in to talk to us and basically said if things continued in this positive direction, there was not much more they can do for us in Cincinnati--Praise God! He is still concerned with Elise's absent blood flow, which is likely more to do with the placental insufficiency than TTTS. Unfortunately, there is not a medical solution to resolve PI except for bedrest and nutrition to maximize what she does get.

We left that office with 3 hours to kill before the ECHO was scheduled. We killed some time in a park so that I could rest and then went to lunch. We laughed because lunch only took us 30 minutes. The ECHO was more difficult on me this time. I was not able to lie flat because I was having a hard time getting any air, so they let me lie on my left side. It was still pretty uncomfortable but thankfully, didn't last too long. Unfortunately, we ended up with another 3 hours before our meeting with the surgeon. The Fetal Care Center did have a nesting room available so we went there and I napped for a couple of hours.

As the hours passed I got more nervous. For some reason I thought that because last week we got the good news early that there might be a reason we were going to be late getting our news this time. An irrational mind, I know, but it's really what went through my head. I got up several times to use the restroom and had to pass the conference room where another family was having their initial conference with the team. I was overwhelmed with empathy, knowing how horrifying it is to hear news that your baby(ies) are in danger. I immediately began praying for that family and their baby(ies) and the Lord used that time to calm my own anxieties.

It was close to 6pm before the surgeon and a resident came in to talk to us. He cut to the chase right away and told us the ECHO looked good. I exclaimed, "Praise God!" and almost jumped out of my seat to hug and kiss the doctor. I restrained myself and listened as the doctor explained that Anne-Claire's right ventricle score had gone from .49 to .46 (great) and her left ventricle score went up slightly but remained within normal range. He was so encouraged that he said they'd decided if everything continued to look good during the next round of tests (Tuesday, March 31), we can begin going to the MFM in Indy for weekly ultrasounds instead of driving to Cincy. Wonderful news!

We asked him several questions about Elise's placental insufficiency and he told us that we would begin seeing some warning signs if she was deteriorating. Lack of growth and severe anemia being the most critical signs. I asked him if he could give us an estimate on how far along I might get before the placenta would stop working and we'd need to deliver and he couldn't say. Some babies are able to make it to full-term, however, which would be fabulous. He also told us that if she begins suffering from severe anemia we could do a blood transfusion in utero that would put both babies at risk of preterm delivery but might be worth the risk. For now, we're thankful that aside from the absent flow in her cord, she seems to be doing well. My prayer is that whatever rest and nutrition I'm able to get will be multiplied in value for Elise--think oil in jar and loaves and fishes. It would be a cinch for God.

Finally, I want to publicly thank all of the wonderful ladies and their families who are sacrificing to serve us during this time. I continue to be humbled by your generosity and kindness. God is using you not only to serve us physically but to put my pride to death and to lift my spirit.

Prayer requests:
1) that Anne-Claire's heart would remain stable and Elise would not show signs of anemia;

2) that my rest and nutrition would be multiplied, especially for Elise so that she can grow like she needs to;

3) that I would remain pregnant for many more weeks, getting at least to 28 weeks and hopefully to 32 or beyond (I'm 23 right now.);

4) that I would have an extra measure of understanding and patience toward my husband who is bearing more burdens than those involving the babies;

5) that our faith would continue to grow; and

6) that Emma and Charlotte woud continue to handle this all so well.

Encouraging Day

We had a great day today! We left our house early, 6am, and arrived in Cincy in plenty of time for our 9:30 U/S. The girls both looked wonderful! It was immediately apparent that they both had good fluid levels and the tech confirmed that. Normal fluid ranges from 2-8cm. Anne-Claire's was 7.7cm last Thursday, was taken down to 4.6cm on Monday with the amnioreduction, and was 5.1cm this morning. Elise's was 3.3cm last week, went down to 2.1 on Monday, but was up to 2.9cm today. Both girls also had nice big visible bladders, which is a good sign that Elise is getting nutrition and producing urine. The one negative was that Elise's cord still shows absent diastolic flow, which is a sign of placental insufficiency. The best way of dealing with this is through strict bedrest and good nutrition for me. The doctor came in after the ultrasound was over and told us he thought both girls looked very good. He said he was, "cautiously optimistic," which is a lot coming from a doctor that rarely offers positive news without good reason.

We left feeling good but cautious because we knew there was a lot riding on the ECHO. The ECHO went well but we didn't immediately get to speak to a doctor about the results. We were able to rest in one of the nesting rooms in the Fetal Care Center before Dr. Lim, one of the fetal surgeons, came to talk to us. He came early so we didn't have to wait until 5pm, which was a blessing from God. He told us that he too felt the ultrasounds looked good except for the absent flow in Elise's cord. He reiterated the importance of bedrest to improve Elise's bloodflow and nutritional intake. The big news was that the ECHOs on both girls looked very good. The only noticeable change was in Anne-Claire's right ventricle. I'm not sure what the measurement is of but normal range goes to 4.8 and hers was 4.9. He didn't feel this was a significant enough amount to consider a progression of TTTS. In other words, our girls' TTTS has not progressed and has in fact improved to some degree by the improved fluid levels.

We won't consider this a successful response to the amnioreduction until we get another positive report on Tuesday when we return to Cincinnati, but for now we're very encouraged. Dr. Lim thinks that we are safe to rely on weekly ultrsounds and ECHOs for the time being until they see some significant change that warrants further action. We'll be watching Anne-Claire's heart carefully for any signs of progression of TTTS and Elise's growth closely. Our goal is to make it to 32 weeks, when both girls have a good chance of survival without medical complications. We're going to concentrate on proper nutrition for me and good bedrest and to pray that God will continue to strengthen Anne-Claire and Elise and to keep them healthy.

We give God all of the glory for today. We've been asking Him to work in a mighty way so to astonish the doctors who were not at all encouraging last week. I do believe He has answered our petitions. I continue to pray that my hope will rest in the Father and not in the doctors or procedures. God was pleased to use the amnioreduction to help our girls, but His hand did all the work. Thank you, Father.

Please pray:1) for continued faith and His glorification;

2) for Anne-Claire's heart and Elise's growth;

3) for strength as we face weekly trips to Cincinnati;

4) that the girls stay put in my womb until it is safe for them to come out;

5) that Emma and Charlotte would continue to handle separation from us as well as they have so far.

Thank you to all who have been fasting, praying, and otherwise laying down their lives for us. We love you all very much.