Thursday, March 25, 2010

Encouraging Day

We had a good, long day today.

We saw the doctor this morning and had some more of our questions answered – including the fact that amniotic fluid levels do fluctuate. We asked how gestational age is measured – whether it is by how far the pregnancy is along or to what developmental size the baby is developed. Thankfully, it’s according to how far along the pregnancy is… this is important because baby A measures consistently smaller than the approximate due date. Encouraging stuff.

We also had the opportunity to go on a tour of the neonatal intensive care unit (NICU) at the University of Chicago. We were really impressed! The floor we toured had 6 pods that each had room for 8 babies. The pod had several nurses attending to the babies, and each baby had either a crib or incubator in a surprisingly spacious area. We found out more about what could happen after the baby is born – in terms of procedures, where the babies will go, whether we’ll be able to see them immediately – lots of details. You might be able to tell that we’re detail-oriented with this pregnancy =), so that was encouraging for us, too. We found out that babies who are 23-24 weeks along have about a 50-50 chance of survival in this NICU; Lisa is at 26 weeks and 4 days today… and of course, the longer the pregnancy goes, the better off we’ll likely be.

In the afternoon, we had an ultrasound in which we saw that the amniotic fluid had increased for both twins – both were measuring over 3 cm each, which is quite an improvement from last week. Both their MCA levels were good – twin A’s had improved from last week – and that gave us more hope today.

All in all, a very good day today. It still ended up being 10 hours from the time we left home this morning until the time we returned, but the good news made the day seem shorter. =) We thank you SO MUCH for all your prayers and ask that you continue to lift up our girls to our incredible God and Heavenly Father. We’ve talked a lot about numbers – percentages, gestational age, weight (which we didn’t find out today – sorry!)… but we know that ultimately only one number matters: the fact that God has all the days of these girls’ lives numbered. We take the most encouragement from that truth… and yet we mysteriously do everything we can – including praying a ton – to help these girls. Thanks for joining us. =)

Saturday, March 20, 2010

Brief Update

Many of you have been wondering whether we found out any more information since Thursday. We did, so we wanted to let you know what we found out.

Lisa had a good conversation yesterday afternoon with the doctor’s nurse. She found out that amniotic fluid levels can fluctuate – so we don’t need to be too concerned that twin A had only 1.5 measurable cm. She also assured us – as many others did, too – that if the situation were really serious, she would have been checked in to the hospital for monitoring.

Thanks, everyone, for your encouraging words and prayers. We’re hanging in there, and we’ll continue to do so – by God’s daily grace. =)


Thursday, March 18, 2010

Feeling discouraged

It was a long day today.

We left for the University of Chicago at 9:40 this morning for our 11:30 doctor’s appointment. We were in his waiting area about 20 minutes before our appointment. We waited until about 12, when Lisa asked if they wanted her to start the glucose test. They said she should get that sugary drink from the lab. She did, and an hour later (about 1) they took some of her blood to test it.

Still no doctor’s visit. =(

It was his turn to read the ultrasounds today, so his scheduler said that he would see us after our scheduled 2 pm ultrasound. We agreed to that, and Lisa had her vitals taken around that time. We asked the nurse if it was normal for this office to be so far off schedule, and she said, “I’ll be honest – yes. Even if the doctor doesn’t have time to see someone, if they NEED to see him, he’ll make time for them.” On the one hand, that’s good – that shows how compassionate our doctor is and shows how generous he was in allowing us to see him. But on the other hand, it makes for a long day for each of our weekly visits.

Our ultrasound started a little after 2:30, and finished around 3:30. We waited about an hour before we saw the doctor. He said that the MCA levels were still normal, so that was good news. We were quite discouraged, however, about the amniotic fluid levels. As long as the levels are above 2 cm, they’re okay – and the last visit showed that each twin had about 4 cm. Today, twin B had 2.5 cm and twin A had 1.5 cm. Not good. We didn’t find out any other information – including the size of the twins (and the reassurance that they’re still growing well). The doctor didn’t really explain what – if anything – could be done about the fluid levels. He basically said that we take a week at a time.

Needless to say (and as you might be able to tell from the tone of the update), we’re feeling discouraged. From the time we left home until the time we arrived home, we had a 9 hour day… and we feel like we know less now than we did this morning. It’s all such a rollercoaster – the scare of contractions Friday, the assurance that the twins had grown so well on Friday night in the delivery wing of the hospital, the good results yesterday from the amniocentesis (finding out all 46 chromosomes were well-formed and each had two x chromosomes, virtually eliminating the possibility of any major syndromes), and now today’s news and wondering what it means. We’re hoping to get on the phone first thing in the morning to find out more from the doctor.

In the meantime, we pray. And cry a little, too. A wise person once told me that it’s okay to cry. It is. So we will… but we’ll also pray for the following –

1. More information from the doctor tomorrow.

2. Increased fluid from each of our girls.

3. Measurable growth.

4. Patience until next Thursday’s doctor appointment/ultrasound.

We’re encouraged to know that you’re praying for us, too. God’s with us on frustrating days like today, and that makes all the difference in the world. We sigh, we pray, we cry, and we cling to the truth that God is good, all the time.


Friday, March 12, 2010

Another scare

****Disclaimer: we’re relieved as I write this, so everything is okay.****

We had another eventful afternoon and evening.

I took Lisa up to Crown Point to get her second dose of steroids (see this morning’s post), and we arrived home around 4. Lisa was tired from a rough night’s sleep last night, so she took a nap while I went back to work. Around 4:45 the phone rang at my desk.


“It’s me.”

“What’s going on?”

“I think you need to take me to St. Anthony’s.”

“Okay, bye.”

Within seconds, I was home and we were taking off for the hospital. It turns out that Lisa had been having some contractions, had called the doctor at the University of Chicago, and was told to get to the hospital because it could be pre-term labor. She was assured that it was NOT related to getting the steroid shots.

We were both really scared; we thought, “This can’t be happening right now.”

I drove fast enough to be noticed by the police – and get a police escort – but there weren’t any officers around. We were still able to get to the hospital fast enough, though that seems like a contradiction because Lisa was writing down every time that she had a contraction on the road. They were anywhere from 4-10 minutes apart. I don’t think we said a word to each other on the way because we were so busy talking to God.

We arrived at the ER and were promptly brought up to a room to be monitored. Our nurse – Peggy – took really good care of us. Thankfully, the contractions settled down – in fact, they seemed to be more in the back than in the uterus, and none of the contractions showed up on the monitors. She was checked for amniotic fluid leakage (there was none) and whether she was dilated (she wasn’t). They did a precautionary ultrasound and saw our little girls’ hearts beating away. Her cervix also wasn’t shortening, so that was also a good sign that pre-term labor wasn’t happening. We also found that twin A has grown to 18 ounces, while twin B is up to 25 ounces; still a 7 ounce difference, but they’ve both grown quite a bit.

So, what was the verdict with all the tests? Dehydration. “Drink, drink, drink.” Another scary night yet another relief. We arrived home around 9, especially thankful that Sylvia went above and beyond by taking care of the kids today and tonight… and doing so on her birthday! Again, we’re incredibly thankful for this relief, and we again realize how incredibly dependent we are on God. Please continue to pray with us; we hope we’ll have a streak of “no news is good news” until Thursday’s doctor appointment. God is good, all the time.


Thursday’s Doctor Appointment

Good news from the doctor yesterday!

The one big piece of info that we received was that twin A’s MCA level is back to normal. We’re very thankful for that – and thankful that God answered that prayer so clearly. So that puts us at ease about potential anemia and/or blood transfusions to consider.

The doctor also decided that Lisa should have a couple shots of steroids to help the babies’ lungs develop… doctors often do that when there is a risk of preterm labor. We asked if the doctor had concerns about that in our case and he said, “Yes.” I asked why, and he explained that it’s because of having multiples and having the surgery. “Do you have any concerns because of our particular case?” “No, it’s just a precautionary way to ensure their lungs develop.” We’re thankful that that was his answer; he didn’t see any major concerns based on the info they’ve gathered so far.

Again, we thank you SO much for your prayers. We ask that you continue to pray for us as we begin thinking about the normal, daily things of (what we hope is) a long pregnancy: helping two kids potty train, taking care of all the household responsibilities, coordinating help/meals, keeping track of (what’s soon to be an enormous mountain of) medical bills, lining up doctor appointments, driving over an hour each way to each doctor appointment, and many other things I’m likely forgetting. I guess it’s another opportunity for God to show His strength in our weakness. =) Through it all, we keep reminding ourselves (or maybe I should say, “God keeps reminding us”) that God is good, all the time.


Wednesday, March 10, 2010


Q: How is Lisa doing?

A: She’s doing really well. It is incredible how quickly she was able to recover from surgery. Within 20 minutes of the procedure being completed, we were talking together in her hospital room. She had two internal stitches. To give you an idea of how big the incision is… it’s the same size as the top of a staple – the same width and length. And just one incision. She has about a dime-size drop of durabond (sterilized super glue) on it. The surgeon said that she can take that glue off sometime next week and that she should be completely healed.

Q: So, what exactly does “bed rest” mean?

A: First, she’s not confined to a bed; she is restrained to laying down or reclining virtually all the time. So she can choose bed or couch. And she can choose which bathroom she uses in our home. =) “What about a conference in Michigan in a couple weeks – can she do bed rest at her parents’ house?” The surgeon plugged his ears and shook his head. We took that as a “no.” “What about church – it’s right next door?” He said that his recommendation (a recommendation and not an order) is that the only time Lisa leaves the house is for doctor appointments. We can follow his recommendations as much or as little as we prefer; having gone through everything that we have, we’re going to do continue to do everything we can do. In short, we’re following the recommendation closely. This means – with having a 3.5-year-old and 1.5-year-old at home – that Lisa really can’t be home with the kids by herself; she can’t pick them up or run after them or run them to the bathroom. We’ve been tremendously blessed already with generosity with regard to both meals and help at home; we figure that’s the way to get through this season. (On an ironic note, we can’t help but laugh at our situation. On the one hand, this is a very stressful time, with TONS of details to work out on a daily (and sometimes hourly) basis… so we can’t wait for it to be over. On the other hand, the longer this time of bed rest lasts, the better; the longer the pregnancy, the higher the likelihood is that the twins will both be born well. That’s all to say this: it’s a tough time that we hope doesn’t end any time soon.)

Q: What’s next?

A: It looks like the specialist who caught the TTTS in the first place (from the University of Chicago) is going to be our doctor throughout the rest of the pregnancy. That starts tomorrow morning; we have a 10 am ultrasound scheduled at the University of Chicago with an 11:15 am appointment with the doctor. We hope to get a really good baseline for the rest of the pregnancy. Also we’re praying (and ask that you do, too) for an improved MCA score for twin A. That, of course, falls under the larger umbrella of good health for both girls and wisdom as we move forward.

Thank you again for your love and support. Your kind words, prayers, and acts of loving service have helped us trust even more in our Heavenly Father. God is good, all the time.


Tuesday, March 9, 2010

Monday news & home

We’re home. We made it back a little after 9 last night… and it was SO nice to sleep in our own bed. It’s the little things that you appreciate the most. And the little ones. It was SUCH a blessing to see our kiddos again this morning. I think they’re almost as happy to see us as we are to see them. Almost.

But before all that happened, we had some tests and news yesterday. An ultrasound, an echocardiogram, and a meeting with the surgeon, to be exact. We met with the surgeon at the end of the day, and he – for the most part – gave us good news.

First – and a huge answer to prayer – we found out that twin B’s Tei score is absolutely normal! Fantastic news! I had mentioned last week that it was five standard deviations from the mean last week. You may have wondered what that meant, so let me explain. Lots of statistics are measured by a bell curve, with the average of all the results in the middle (called the mean), and the rest of the data is spread out onto a bell-shaped curve. 68.2% of the results are within one standard deviation of the mean, and 95.4% are within two standard deviations. How many results are out in the five standard deviation range? Not many… I would guess it would be in the thousandths of one percent. So twin B’s scores were extremely poor, but now they are zero standard deviations away from the mean; that is to say, they’re normal. Praise God – this is exactly what we were praying for!

Second, the less encouraging, more-prayer-is-needed news. Twin A still has a medium-plus size hole in her heart. That hasn’t changed at all. Also, a new concern came up for twin A. The doctors took several looks at the blood flow in her middle cerebral artery (MCA) – it’s the main artery that goes through the middle of a person’s brain. The blood flow was elevated, so they want to keep an eye on it. Why is that a concern? The surgeon said that it could show some other stressors happening in her body. If it continues to be high – or even goes higher – then they have concern for anemia in her. If these high levels were sustained – this is a big if, an if that the surgeon didn’t want to even discuss because it’s so far down the road – that could lead to heart failure. If the concerns continue, the best treatment would likely be a blood transfusion to twin A through her umbilical cord… so we hope and pray it doesn’t come to that. It’s also possible that it’s elevated because of the recent surgery; it may return to normal at the next doctor’s visit.

What’s next?

Within the next week, we’ll have another ultrasound to get a new baseline measurement for the rest of the pregnancy. We’ll then have ultrasounds on a weekly basis until these babies are born. Somewhere between 26 and 28 weeks (depending on the doctor’s decision), we’ll add twice-a-week non-stress tests to make sure the twins are doing okay. Of course, the longer the twins do well and the older their gestational age, the better their chance of survival. So we pray – and pray hard – for “no news” =) to share with you. I hope to simply update after doctor’s appointments so that you know how things are going.

Again, thank you, thank you, thank you for your prayers. It’s been a heavy eight days, and we know that your prayers have made a huge difference. Please continue to lift our family up in your prayers – as we learn to accept help, as I continue to assist in the princess bed rest =), and as we daily lean on God’s everlasting arms. We’re encouraged, but we know that we have a long way to go.


Sunday, March 7, 2010

Sunday Reflection & Monday Schedule

“How do you do it?” “I can’t imagine handling that…”

Those are a couple variations of one sentiment we’ve heard countless times in the last few weeks: “I couldn’t go through what you’re going through.”

(While I know that this has the beginnings of patting ourselves on the back or bragging, believe me, that’s not what I’m going for. And if you’ll continue to read, you’ll see that that’s not where I’m going with this either.)

To answer the question, “How do you do it?” I’d like to ask another question: “How do YOU do it?” How does anyone do it, for that matter? How does anyone deal with the stuff of life, the daily difficulties, the little – and not so little – hurdles that come between you and the finish line of life in a broken world?

Allow me to give two answers; one for someone without a living faith in the One Living God, and one for folks like my wife and me.

First, I myself wonder how people who aren’t Christians get through life. Time and time again, I have had that conversation with members of my church when they’re in the hospital. And I don’t bring it up myself. “I just can’t imagine how a non-Christian could get through a storm like this,” is something that is said virtually every time I visit someone in a crisis situation. And yet, I think I’ve stumbled on how such people get through those times. Here’s how: God. Of course, they don’t know that directly. They wouldn’t be able to put their finger on that – in fact, they would probably argue against such a conclusion. Nevertheless, the Bible describes God as giving rain to the godly and ungodly. We’re told that God cares for the sparrows and dresses the lilies; “how much more for you, o man?” And besides the external, daily provisions, I think that God provides incredible internal strength for everyone – both for those who believe and for those who don’t. “What’s this?” you ask? Folks without the Biblical vocabulary might call it the human will or the human spirit or mere drive. And they might define it as this uncanny, supernatural ability to press on, to hang on, to carry on. It’s what our poets and playwrights, our authors and actors portray in every tome. And here’s what the Bible calls it: being made in the image of God. Having something – like good art that can’t be defined but only recognized – that makes humanity different from everything else in this world. That’s how I think non-Christians get through tough times – ultimately because of God; proximately because of God’s provisions and God’s image.

Second, I think that Christians have what non-Christians have, namely, provisions and the image of God; but we also have more. We have hope that God will carry us through and that these trials don’t last forever. We have faith that God is in control and that everything works for the good of those who love him, who have been called according to his purpose. We have joy – pure joy – whenever we face trials of many kinds, because we know that the testing of our faith develops perseverance; perseverance must finish its work so that we may be mature and complete, not lacking anything. We have strength from other Christians as we bear one another’s burdens. We have communication with God, since the Holy Spirit takes our groans and transforms them into exactly what God needs to hear from us. We have grace – the train ticket at the station, “give us this day our daily bread” kind of grace so we take one day at a time.

How do we do it? The same way you do. The same way a young mom deals with her chemotherapy treatments. The same way a young family handles the hole in their home while Daddy is away in Iraq for a year. The same way that couples persevere through the tragedy of miscarriage. The same way that parents and siblings handle the sudden, no-signs-this-would-happen loss of a child.

God carries us through, and we carry on. We care for others, and they care for us. We pray for you, and you pray for us. God gives us all these things to assure us of his fatherly care for us. One day at a time.

What’s left for us to do in Cincinnati, in (we hope) our last day here tomorrow?

We have a 9:30 ultrasound to measure how our girls are growing and what’s happened since the last one on Thursday. Next, we have a 2:30 echocardiogram – it’s there that we’ll find the Tei (sorry for misspelling it “Tay” – it’s named after an Asian cardiologist who created a scale for heart function) score and see whether it has improved for twin B. Maybe we’ll also get a better picture of the hole in twin A’s heart, now that she has a little more room to move. Finally, we’re scheduled for a 5:30 consultation with the surgeon and some other doctors to go over results and devise a plan from this point. Then we hit the road so we can sleep in our own bed tomorrow night. =)

Please pray with us for a good day tomorrow – specifically, that the Tei score will have improved, that the twins continue to look strong and healthy, and for wisdom as we discuss plans with doctors. Thanks again so much – we’re thankful that God has given us YOU as a means of grace for us. =)


Saturday, March 6, 2010

Saturday Scare

Yesterday, I said that no news is good news; today, there’s news.

After the procedure, the doctors told us to keep an eye out for a handful of things that could give us concerns. This included contractions, bleeding, and leaking fluids. Thankfully, the first two haven’t been an issue at all. But today, there’s been some leaking. The concern with that is that one of the amniotic sacs could have been damaged during surgery. Another possibility is pre-term labor – leaking could indicate that Lisa’s water broke. It wasn’t a tremendous amount of fluid, so we went back-and-forth about whether to go into the hospital.

Finally, this afternoon, we decided that we should call the nurse at the Fetal Care Center. She told us to go into the University (of Cincinnati) Hospital. While there, Lisa was monitored to ensure that she wasn’t having any contractions. Praise God, she wasn’t.

She was also checked to see whether the sacs and membrane were intact. They still were, so that was a huge relief, too. They figured it was just a little fluid that isn’t anything to worry about. The nurse then checked for the heartbeats. She searched for twin A’s for about (an eternal) 45 seconds or so… before she finally found it. What a blessing to know that she was okay! Twin B was much easier to find, and we could hear that she was moving a TON (as she always seems to do at the doctor’s office). =)

To be extra sure that things were fine, they did a very abbreviated ultrasound. They saw both babies moving around, and it also looked like the amniotic fluid level in each is about the same! That was absolutely awesome to see, so we praise God for that good news, too.

[Sigh] If nothing else, it’s a reminder that we’re not in the clear. While we celebrate good news – including the (apparently) successful surgery and good results from tonight’s unplanned hospital visit – we also know that we have (we hope) 8-12 weeks on pins and needles until our little girls are born. So we wait and pray, wait and pray…

Thanks to everyone – far and near, well-loved friends and folks we haven’t even met – who are praying for us. God is giving us strength and peace through all this – even during scares like tonight. God is good, all the time.


Friday, March 5, 2010

Friday Reflection

In lieu of an update – and no news is good news, seeing as we weren’t scheduled to see any doctors today – I thought I would share a snippet of a conversation Lisa and I had on the way to Cincinnati.

John Calvin said it well with these words: our hearts are idol factories. Because of our brokenness, we worship things other than God – and often it’s without even realizing it. So the question is not whether a person worships, but who or what a person worships. The worst part of it all is that the idols we worship tend to start healthy. For example, we’re called to be caretakers of the world, yet it’s easy to fall into the trap of worshiping the creation rather than the Creator. Or food; God gave it to us for our nourishment, yet we live to eat rather than eat to live. You could see how money or pets or sports – all things that can be good, healthy things – could also be distorted and turned into idols.

(This is where the conversation picks up) How ‘bout kids? More pointedly, are our own kids (born or unborn) idols in our lives? Where’s the line between loving them and worshiping them? Between making them a priority and putting them above all else?

I think those are questions every parent should ask; they are questions that are impossible to avoid in the middle of a storm like the one we’re going through.

Are we making these twins a higher priority than God right now? I don’t think so; in fact – if anything – we feel closer to God and His people now than on most “normal” days (perhaps tomorrow’s reflection will flesh this out in more detail). I think we’ve been seeking out God more for wisdom and peace, we’ve been praying more fervently than usual, and we’ve been ministered to by God’s Word more clearly. God is by far top priority through this all.

Then why so focused on this – what’s that all about? The obvious answer is that we have needed (and still need) to do everything we can to help these girls right now. There’s a small window for action, and we wanted to do something while we could.

But I think there’s something deeper to it.

Neal Plantinga – soon to be president emeritus of Calvin Seminary (which happens to be where I studied) – wrote the book on sin. No, literally, he wrote the book on sin. It’s called Not the Way It’s Supposed to Be, and it’s a fantastic look at what we all want to ignore. One of the ways that he describes sin is “corruption.” Things aren’t what they should be; they’re distorted and marred.

And right now, we’re feeling the effects of a broken world.

At this point in life – married almost six years, two kids at home, and praying for two more on the way – there are handfuls of things that aren’t the way they’re supposed to be. We shouldn’t be – against our will – away from our kids for eight days. We shouldn’t be having concerns with the pregnancy. We shouldn’t be having prenatal surgery or echocardiograms or an MRI for unborn babies. These are the types of things that didn’t happen in Eden.

So we cry out – and you add your voices to ours – to the one True God. To the One who puts all other gods to shame. To the One who knows all too well what it is to be heartbroken for His Son’s pain.

And then we hope with faith for life the way it should be, taking heart from the glimpses we catch of it this side of heaven.


Thursday, March 4, 2010

Thursday update

God enjoys lavishly blessing his children with good gifts. We know that there is sin in the world and that things don’t always turn out the way we want, but right now we are experiencing God’s rich gifts. Each day that God gives us with our precious little girls inside me is a gift. Every ultrasound in which we see two flickering heartbeats dancing in rhythm is a gift. All of the gentle, and sometimes not so gentle, kicks I receive from the babies are reassuring gifts from our great giver and provider.

God has given us peace to weather the storms and loving comfort for the moments of waiting that are almost too much to bear. He has turned moments of sorrow into dancing again. At first we thought the chances of taking two babies home was about 50-60 %. This morning Dr. Lim, who performed the surgery, explained that at the Children’s Hospital in Cincinnati the chance of having one baby living are about 91-93 %, and the chance of taking two babies home is about 68%. These numbers give us cause to celebrate!

Reasons for thanks:

  1. At our follow-up ultrasound this morning we saw both babies’ heartbeats and noticed that Baby A has more living space (amniotic fluid) than before. She is already kicking more with her extra workout room, and I love every minute of it!
  2. Both Jeff and I had good nights of sleep last night despite the many beeps and buzzes in our room that could have kept us awake.
  3. Paul Kingma, Roy and Sonja Kingma’s son, came to visit with us this morning and also sounded pleased with the results of the surgery. He is a doctor here who works with lots of babies in the Neonatal Unit, so his encouragement meant a lot!
  4. We made it back to our hotel to rest until the follow-up tests next Monday.
  5. Jeff surprised me with a bouquet of flowers, which he put in a homemade 2 liter pop bottle vase, which makes them all the more endearing. (Do I have the best husband in the world, or what?) :o)
Prayer Requests:
  1. Our girls will continue to adjust well to the change in blood flow created by the surgery and that they will grow and be fully developed before they are born.
  2. The hole in Baby A’s heart will by God’s grace close before she is born. The doctors told us it would be rare for this type of hole to close before a baby is born, and surgery should be able to fix it if it is still present at birth. We believe in a big God who can work miracles today as he did long ago, so we offer us this request even though the odds are against it.
  3. Baby B’s kidney would return to normal size before birth.
  4. I (Lisa) would heal quickly and without any complications.
Feeling God’s love and mercy,

Wednesday, March 3, 2010

What a difference the staff makes!

I’ve mentioned in passing over the last few posts about various hospital staff who have worked with us… but I thought I should devote a full-fledged post to them.

The folks here at the Fetal Care Center of the Cincinnati Children’s Hospital have been absolutely incredible! We really mean it. This afternoon, after the procedure was done, Lisa and I were talking and she said, “Because they’ve been so kind and considerate, it makes all the things so much easier to go through.”

Some of the ways they’ve made our life easier this week:

  • The receptionist/scheduler made us feel extremely welcome as an appointment was delayed. She let us wait in a very comfortable room and provided drinks for us. Thanks!
  • Karen, one of the nurse midwives, spoke to us after (it appeared) coming directly from a surgery. She was kind and answered every question that we had. She even shared some wisdom she has gained as a grandma, too. =)
  • Comfortable waiting areas and a movie during the MRI.
  • Connie, the tech who did the ultrasound, joked around with us and made the whole experience much more enjoyable.
  • Dr. Cnota, the cardiologist, read the results as they were taking place so that he could share his understanding of twin A’s hole in the heart within minutes of the procedure’s completion. He also went above and beyond by participating in the consultation that afternoon.
  • Jenny, another nurse midwife, made us feel comfortable with her and willingly called us back last night when we had a question about medication dosing.
  • Our two nurses for most of the day – Mel and Lisa 2 – were fantastic. =) I told them I would say something on the site about them, so here it is: wow, what a blessing. Despite a somewhat scary day, we had lots of fun together. Off the bat, we laughed and had a great time. They provided all the pre-surgery prep work. They were there when we were constantly asking questions. Lisa 1 and I were just saying how they’re the type of people we’d want to hang out with outside the hospital, too; if they were closer, we’d want to play cards with them on the weekends. =) I teased them that if they behaved well enough, I might have to name the twins Lissa (short for Melissa, her full name) and Lisa. Lisa 1 thought that might be too confusing, so even though our nurses upheld their end of the bargain… we’ll see about the names. =) Between all the laughs and fun, we had some good, deep conversations, too.
  • Our other nurses have been great, too. Lisa 2 was replaced by Lisa 3; Lisa 3 and Melissa were replaced by Gina Marie and Michelle. All have been top notch – they’ve not only provided medical care, but also they have showed truly caring hearts.
  • Dr. Lim, the surgeon, has been very helpful in answering all our questions. He stopped by again this evening (at 7:30 or so?) just to check in on us. I’ve commended him several times with sincere “thank you”s… I wish I could say more.
That’s all to say, I sure am thankful to God for the people who have cared for us here. We heard rumors about the prestige of the Cincinnati Children’s hospital… and it’s lived up to it to this point.

Thanks, everyone!

Post-surgery good news

Lots to be thankful for.

The surgery started officially at 9:07 and ended at 10:47.

In between, my epidurally-induced numb wife did a great job. They only had to make one small incision – the tenth of an inch kind – so that was a big answer to prayer. =) Praise God.

There were six connecting vessels (see mid-surgery details post to understand that term), and the surgeons were able to laser all six of them. That portion of the surgery took 2 minutes and 20 seconds (the surgeon told me!) This takes away the chance that one’s success in utero depends on the others (again, see the previous post). Great news… so thankful for that!

They took out about 250 mL from the larger twin’s amniotic sac, thus relieving some of the pressure on the placenta, with the hope that this will subsequently provide more nutrition to both twins. Very good news.

They performed laser microseptosomy in three places… this basically allows some of the amniotic fluid from the larger twin’s sac to flow into the smaller twin’s sac, allowing more room for her. He said they could already see more fluid going to her. Fantastic!

More good news: it looks like each twin has a (roughly) 50% share of the placenta. I had mentioned yesterday that we hoped for at least 20% for twin A. It’s one of the “immeasurably more than we can ask or imagine” kind of answers from God. =)

Those are all things to be thankful for. In terms of an ongoing concern: although twin A has about half of the placenta, she doesn’t have quite the vessel structure (roots!) going into it; twin B’s structure is much stronger. So that’s something to pray about.

In terms of follow-up, here’s the plan.

The nurses will decide when (maybe later today?) Lisa can get out of bed. For now, she’s not getting up. Tomorrow we’ll have another ultrasound and see how the twins are doing with regard to the change in blood flow. Pray (pray, pray!) that they handle the change well. We’ll then be discharged from the hospital and back to our hotel sometime tomorrow.

We have an appointment scheduled for Monday to get an even better picture how things went. Then we’ll have another ultrasound and another echocardiogram. After a few hours, we’ll get the test results from the surgeon and find out what long term follow-up will be.

For now, praise God with us! The surgeon said it went as well as it possibly could have. The risks to Lisa are virtually over. =) We asked what the chances might be for both twins to survive, and the surgeon made this apt analogy: “It’s like asking what college a 7-year –old will attend.” I think there’s a long way to go, but the journey right now has sign posts of success.

God is good, all the time.

Mid-surgery details

On a less emotional, more practical note

The most common question right now: how long is the surgery?

I’m wondering the same thing.

The surgeons themselves said they weren’t sure either. There are lots of variables.

But before I get into that, I thought I would explain a bit more in-depth what we learned with the consultation with the doctors. I misunderstood the procedure before yesterday – discard anything I said to you about it before yesterday =).

Each twin has an umbilical cord that is attached to the placenta. Each one is receiving nourishment from it. Think of the cord like the trunk of a tree. How does a tree get nourishment? From the roots, of course! What are the roots in utero? Blood vessels. These blood vessels are not only within the cord, they are also on the outside (kind of like roots are outside the trunk). Where does Twin-to-Twin Transfusion Syndrome (TTTS) come into the picture? It takes place when the external blood vessels are entangled together. Somehow (the doctors don’t know how), the blood from those entangled vessels goes to one twin more than the other. They call this twin the recipient twin – it’s twin B in our pregnancy. The smaller of the two is called the donor twin – it’s twin A in our pregnancy.

This is a concern for several reasons.

  1. The recipient twin can get too much nutrition, grow too fast, and be unable to handle it. Cardiac problems ensue, including – but not limited to – cardiac arrest and heart attacks. It’s a fatal condition.
  2. The donor twin can get too little nutrition, not grow fast enough, and not sustain life. With less nutrition, there’s subsequently less amniotic fluid, leaving less room to grow.
  3. The recipient twin’s amniotic sac grows large because of the increased amniotic fluid. The sac then presses against the placenta, preventing the cilia from working most efficiently – these cilia gather nutrients, which then nourish the babies. When these cilia don’t work well, the lack of nutrients is particularly dangerous for the donor twin.
  4. Because the blood vessels are entangled, if either twin has problems, then both twins have problems. What happens to one, happens to both. So, if the recipient has a heart attack, the connected blood vessels drag the donor down to death, too. Or if the donor can’t live, she causes the recipient to die, too.
So that’s where this surgery comes in. They use a laser to cauterize all the vessels that connect the two twins. They said that if even one connection is left, then the surgery doesn’t work. So that’s why they don’t know how long the surgery lasts; it completely depends on how many vessels there are connecting them – something they don’t entirely know until they are in the middle of surgery.

I mentioned yesterday about concerns whether twin A has enough of the placenta. This surgery really can’t do anything about that problem; either her trunk and roots are well-placed or they’re not. They can’t tell about placement until during the surgery – so we’re praying for good results on that front, too.

Updates post-surgery coming soon…

Mid-surgery reflection

from one daddy to Another

Dear God,

I know You’re in control, I know that You love us, and I know that You’ll never do anything that will harm us (some things might hurt us, but those will only refine us). Help me to trust You now, even in the middle of this storm.

Lately, I’ve been referring to these unborn daughters as my girls, yet I know that, ultimately, they’re not mine. I know that they’re Yours. So I bring them before You, I lift them up to Your throne, I place them at Your feet.

And yet… You say in Your Word that we can approach You boldly. You say that if we have faith the size of a mustard seed, we can move mountains. You say that the prayers of the righteous availeth much. You bent Your ear to Moses when he begged You to spare the Israelites after they worshiped a golden calf. You relented Your anger several times when Abraham implored You to spare Sodom and Gomorrah, if only [just so many] righteous people lived there. I want Your will to be done, yet I want Your will to have certain traits about it. So, with a deep sense of mystery and faith, I plead with you, Abba:

I want to take these two girls home.
I want to baptize these little girls in church.
I want to have them play with the other kids in the church nursery.
I want them to know and love their older siblings.
I want them to learn and grow in wisdom.
I want to hear their Professions of Faith.
I want to see their graduations – from high school, college, and beyond.
I want to walk each of them down the aisle, to hand each to another Christian man.
I want to be a grandpa to their children.
I want to see them grow old and gray.

What I want, Lord, is simple: while I know they are Your girls, I want them to be my girls, too. So boldly, in good faith, I beg You – can’t they be our girls?


Tuesday, March 2, 2010

Tuesday’s BIG update

Wow, it’s been quite the day today. Lots and lots of news.

We started early again this morning with the fetal echocardiogram. Surprisingly, this was simply another ultrasound – one that focused (virtually) exclusively on the hearts of both twins. They were basically measuring function, size, and anatomy. After about 1.5 hours of measuring, the cardiologist came in and took some more measurements. Both girls behaved really well – they sat remarkably still and allowed the experts to get very clear images.

The cardiologist then went over the results with us. Twin B’s heart – given the TTTS diagnosis – was “on the mild end of the spectrum.” That is to say, rather than having difficulty squeezing or functioning, it appeared that it was doing quite well. He noticed some thickening in the heart, which he said is typically for the recipient (larger) twin. It is most likely caused by the syndrome, and he said it shouldn’t cause us to be concerned. That will continue to be monitored.

Twin A’s results scared us. He said that there is a “moderate plus” size hole in her heart. (Honestly, when he said it I thought, “Good thing there’s a cardiologist in the room, because I’m about to have a heart attack.”) I remember as a kid hearing about babies with holes in their hearts and about how serious the condition is. I think that’s why I was so scared. Anyway, he informed us that this hole shouldn’t cause any harm to the baby while in utero. He told us that typically – in a single pregnancy – a hole might close by itself during the course of the pregnancy. Following birth, they would run some tests to see whether it had closed, and then they would plan a course of action. Then – if need be – they would perform surgery 3-6 months after birth. However, in the case of twins – and especially ones that are going through TTTS – it’s a little different. He said that the more prematurely born they are, the more difficulty we might have with this. If, for example, the lungs aren’t fully developed and there’s a heart condition, too, this could cause problems. For this reason, the longer the pregnancy – and the longer the babies develop in the womb – then the greater the likelihood is that this hole in the heart won’t be problematic. It is, as the cardiologist put it, a “curveball” in the whole process. For those who care to know the details, the technical term is Ventricular Septal Defect (VSD). It’s fairly close to the tricuspal valve, so they said that it has less chance of closing on its own.

At around 2:30 we were able to meet the team of doctors for consultation. They went over the results of the ultrasound, the MRI, and the echocardiogram. All those tests told us what you (now) already know – the enlarged kidney in twin B, the hole in the heart in twin A, and very little (“if any,” they said) amniotic fluid around twin A. We found out that twin B’s Tay (spelling?) measure wasn’t very good – five standard deviations from the mean. The Tay was only one of five measures, and the other four were relatively good. This particular measure has to do with the functioning of the heart; discouraging news but it made us more glad that we are here for the procedure.

Another big concern: they weren’t really sure whether twin A is getting enough nourishment. Apparently, she needs at least 20% of the placenta to survive, and they’re not sure that she has that much. We won’t know whether she does until they go in for the surgery… her survival during and after the surgery depends on that, and they can’t do anything to fix it…

After we battered the team with questions, we ultimately agreed on having the laser procedure take place. It’s scheduled for 9 eastern, 8 central Wednesday morning. We need to arrive at the hospital two hours before the surgery. We picked up a prescription to lower blood pressure – they hope that this will help prevent the babies from wanting to be delivered with tomorrow’s surgery. I think the plan will be for Lisa to stay on that medication until they are delivered. We also found out that Lisa is on full bedrest – no cooking, cleaning, shopping… lots of rest, and this will likely be the case for the rest of the pregnancy. We found out, too, that the follow-up tests after the surgery will be Monday, meaning we won’t get home until Monday night at the earliest.

Things to be thankful for:

  1. The girls are still doing pretty well. It would have been really hard to not see one of their heartbeats during the test this morning, but thankfully that wasn’t the case.
  2. Hope. Holes in hearts can heal or be mended; twin B’s Tay counts should go up following this surgery. There’s hope.
  3. Skype. We had the chance to see our kids today with a video call… and that lifted our spirits quite a bit. Lisa’s talking with Kruesie on the phone as I’m writing this… that’s good medicine for us. =)
  4. Things could be worse. At one stop, Lisa overheard a mom going up the hospital elevator. The security guard asked who she was going to see – and she said, “A Make-A-Wish child.” Boy, that would be hard!

Things to pray for:
  1. Nutrition. We really want to find out from the surgery that twin A has plenty of nutrition/placenta. Her survival depends on it.
  2. Only a small incision. If the surgery goes as planned, there will be only 1 (or maybe 2) incisions that are 1/10 of an inch in size. If need be, they may make an incision that is similar to that of a c-section.
  3. Good results. We hope that both babies will adjust positively to the change in blood flow that will result from tomorrow morning’s surgery.
  4. No complications. We went over a discouragingly long list of remote possibilities of things that could go wrong. We pray that none would.
We’re still expecting great things from God tomorrow. We know He’s in control, we “He’s got the itty-bitty babies in His hands” (from “He’s got the whole world in His hands), and we know that you’ll be pleading for God’s grace with us.

Monday, March 1, 2010

Our first day

Today began with an early start. Our first appointment was at 8:30 (7:30 our time), and we figured the hospital was a good 20 minutes from where we're staying. When we thought about morning rush hour traffic and the difficulty of going to a new hospital (with new parking garages, layouts, etc), we figured we should leave earlier and give ourselves plenty of time. We got out the door at about 7:45 eastern time and arrived around 8:15.

What a facility! The Fetal Care Center is part of the Cincinnati Children's Hospital, and it is a beautiful place. Bright colors, murals, and state of the art technology are *everywhere* there. But there's lots of sadness there, too. As we were walking to our first appointment, a mother carried her son - maybe 2 years old - who had no hair because of chemo and was wearing a mask over his nose and mouth to prevent the spread of germs. We smiled at him, and he waved good-bye when we went our separate ways. We saw lots of walkers, wheelchairs, amputations, and bald heads... and all of them belonged to children. Heartbreakingly sad, yet there were signs of hope and healing, too.

We waited in our room until about 8:45 before the receptionist came to tell us that the nurse midwife who would see us was still helping with a surgery. She (Karen) came into the room at around 9:30 and went over some personal and family health history with us until 10, when our ultrasound was scheduled. We made the 15 minute walk over to where the ultrasound would be - the place is HUGE... we were in 3 of the corridors, and each one felt about the size of a terminal in the airport. Anyway, we waited a while longer, then the tech (Connie) called us back. As far as we could tell, both twins still look healthy. Hearts were beating - theirs and ours, too - so that was a good sign.

Lisa got in for the MRI around 12:15 and had been fasting since 9, per the instructions. The nurses said that it would be about an hourlong procedure, so at around 1:30 I started to wonder what was happening. Finally, around 2 Lisa came out of the room, still in one piece. I was concerned that she had fainted or something - you need energy (food!) when you're carrying two babies. It turns out that our girls were just a bit wiggly, so they needed to have several attempts at some of the pictures.

We didn't quite get through all the things that Karen wanted to cover, so we headed back to her office. She sounded very encouraging to us, telling us, "You don't have any greater risk than a healthy person for the procedure" - which is to say, Lisa doesn't have major health risk factors. A good thing. =)

We just arrived back to the hotel room and had sandwiches for lunch. Lisa is taking a nap after a full day. We had hoped to run some errands and eat out tonight, but Karen told Lisa that she's not allowed to go shopping. =( "Modified bedrest" was the term that she used... so no shopping tonight. Maybe I'll pick up dinner and bring it back to the hotel. And we'll see if there are any good movies on the hotel cable.

Things to be thankful for:

  1. A good, full day of tests. We're thankful that - though they weren't right on schedule - three things are DONE. =) Every step counts.
  2. Good health for our kids. It's something you take for granted, but that ends when you see children in pain. To anyone who has had a seriously sick child: you deserve a medal for courage. Honestly.
  3. Opportunities to love people. We joked around with the nurses and technicians. We smiled and waved at kids. We asked how old kids were. Even when going through tough times, there's plenty of people who could use a smile.
  4. As far as we can tell, our girls continue to do well.

Things to pray for:
  1. Health for our girls. We found out that Twin A is measuring at 12 oz and twin B at 19 oz; 11 days ago, there were at 10 and 15 oz, so the gap is widening a bit. We want to help them while we can.
  2. Peace in our hearts as we think about the implications of modified - and potentially "full" - bedrest. I always LOVE thinking about Corrie Ten Boom's perspective on facing tough times. Her dad would always wait to give her the train ticket until they were at the train station - and never before. He said, "I'll give it to you when you need it." And that's how she saw God's grace, too. He gives it when we need it. If we get ourselves all worked up about how we're going to handle things down the road, it doesn't do any good. Instead, we just trust our Father... He will give it when we need it.
  3. We have an 8:30 (eastern time) appointment tomorrow morning for an Echo-Cardiogram for the twins. We pray that their hearts will look good and healthy... and strong enough that they can survive and thrive after the procedure.
  4. We have a 2:00 doctors' consultation tomorrow afternoon. It sounds like we'll meet the team of doctors that would perform the surgery, as well as find out what all these tests have said about the health of the twins and the likelihood of success with the procedure. We pray that they will know *exactly* what to do to help our girls flourish.
Thanks again for calling on our Heavenly Father with us!