Saturday, January 31, 2009
Of course the news that the babies have TTTS is devastating, and it is scary to know that there are no guarantees. But it is amazing to me how God has provided so much hope and encouragement this last week, and you have all been a part of that, so I want to thank you.
We have been blessed. Since we first found out about the babies condition, we have been flooded with phone calls, text messages, and emails from so many of you saying you are praying for us, offering help, and sending encouraging thoughts. You have no idea how much these things have given us strength and made us feel so loved. I hope one of these days to respond to each of these emails and return calls to those of you who I haven't talked to yet. And I plan on saving each email and printing them, so one day I can show these little girls all of the people who loved them and prayed for them long before they were born.
We have been blessed by so many at UNMC...from Dr. Tomich who so wonderfully worked us into his schedule and coordinated our trip to Mayo, to Chad's bosses, who have told him not to worry at all about being gone from work because they've got it covered, to his fellow residents who have asked how we are doing and offered their encouragement. Thank you!
We have been blessed by my parents' employers. Mom and Dad will have Emily next week while we are at Mayo, and both Hallmark and KAT 103 have demonstrated so much flexibility with their schedules. Mom's boss Amy has even helped us with a connection to another family who just had two baby boys with TTTS, and we are anxious to talk with them. Thank you!
We have been blessed by my dear friends at Black Elk, where I used to teach and still sub. Thank you for your emails, prayers, and for the wonderful gift you gave us...it brought me to tears.
We have been blessed by our Worship Team at church, who were there the night we realized what we were facing and immediately prayed with us. Thanks for your incredible help while we are at Mayo...we are speechless.
We have been blessed to spend some time with friends over the last week, sharing our fears about what is going on, but also being able to talk about other things in life and laugh. It is great to have joy in the midst of a hard time. Thank you!
A couple of other blessings I want to share:
Emily-What a blessing she has been in our lives since the day we knew she existed. However, I think the events of the past week and a half have amplified just how much she amazes us. She has kept us laughing during this time. Wednesday we went to her 2 year check up, and she was the picture of health. I am always thankful that she is a healthy little girl, but I think I was more thankful this time due to circumstances. And Thursday night blessed me most of all. We were getting ready for bed when she said "Wanna read a book?" She handed me one she had already picked out and attempted to sit in my lap. My tummy is rather tight, so it is uncomfortable to have her sit in my lap right now. I asked her if she could sit next to me because of my tummy, and she responded, "Mommy's tummy full?"
"No," I said. "What is in mommy's tummy right now?" She smiled and lifted my shirt, said "Hi, baby twinkles!" and gave my tummy a kiss. I have no idea how much she truly understands, but she knows that whatever is in mom's tummy is precious and loved by us.
Finally, last night Chad and I had just finished watching a movie and he was on the phone. I was still reclined on the couch when a giant bump appeared on my stomach. I felt it, and it was baby B, the one who is crowded in her little sac, moving. I grabbed Chad's hand, and he was able to feel her pushing and moving around. I haven't really been able to feel the babies move yet, so I was amazed that it was so obvious! There she was, pushing some little body part with such strength. "Hang on, little girl," Chad said. "In a couple of days, you'll have more room in there."
I know there are not guarantees, but I have a lot of hope for these babies. You have all been a part of that...I know your prayers are helping these little girls. Thank you so much, and we love you all.
Thursday, January 29, 2009
I know it is nowhere near an original thought, but the realization that we have no guarantees about the time we will have together is helping us to enjoy each day--even as we face our greatest challenge to date as a married couple. We attribute the peace we are experiencing to the prayers of so many loved ones. So, to all of you, we give innumerable thanks.
Romans 8 says:
"And we know that in all things God works for the good of those who love him, who have been called according to his purpose...What, then, shall we say in response to this? If God is for us, who can be against us? He who did not spare his own Son, but gave him up for us all—how will he not also, along with him, graciously give us all things?...For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord."
As I have read this again and again, I keep wanting to read where it says, "I promise your children will live and be healthy." It doesn't say that, but is does remind me of his love, from which no one can separate Jessica and me. AND it says that we if lose a child, we are in good company. We are confident that God loves these children even more than we do, and we believe that whatever the outcome, it will be for their good. I will readily admit that I don't know what it would mean for him to "graciously give us all things" in the event we lose one or both babies. We are not going to let it bog us down though...we have better ways to use this borrowed time.
Monday, January 26, 2009
If you do not know what I am talking about, let me fill you in:
One week ago today, Jessica and I went to her OB appointment for the 18-20 week ultrasound (she was 19 weeks as of last Wednesday). We were excited to find out the gender of the children, but more importantly to make sure they were structurally intact and growing. I noticed during the ultrasound that one baby was moving much more and seemed to have more room than the other. We were very pleased to find out both babies are girls (did not know at the time whether or not they were identical); yet, I felt an uneasiness that I hoped would subside when we spoke to Dr. Ryder.
Unfortunately, he gave us good reason to feel uneasy when he said that one baby had too much amniotic fluid, the other had too little (technical terms=polyhdramnios/oligohydramnios). He said not only that he wanted Jessica to see a high-risk pregnancy specialist (aka Maternal-Fetal Medicine doctor or perinatologist) but also that we should try to get it done ASAP. Before Jessica arrived home from the appointment with Dr. Ryder, the MFM doctor's office had already called to schedule the appointment. Monday and Tuesday night were nights of poor sleep. Part of this was anxiety, much of it was Jessica's ongoing feeling of heartburn at night. Wednesday, Emily turned two and we had a nice evening with family celebrating her. She continued to use her favorite phrase from Christmas: "Wanna see what's inside?" Still, sleep was hard to come by Wednesday night.
Thursday at 12:30 we went in for the ultrasound first, then met with the doctor at~1:15. He told us that there was oligo/polyhydramnios, and that it was due to a connection between an artery and a vein that results in one baby stealing blood flow from the other. Later, I would learn the name of this syndrome: Twin-Twin Transfusion Syndrome. Most people could guess that it is not good for the baby who is being denied blood flow (called the "donor" twin), but not everyone would guess that it is also bad for the baby who receives the extra blood (the "recipient"). The recipient gets fluid overloaded and develops heart failure. Dr. Fleming, the MFM doctor at Bergan, told us our options: 1) a large volume amniocentesis (poking a needle through the uterine wall and removing a large amount of amniotic fluid to even things out) with septostomy (poking a hole in the membrane dividing the two babies, hopefully maintaining equal pressures), or 2) going to Cincinatti for a laser ablation of the abnormal blood vessels. Jessica and I both had the impression that that the laser procedure was new and experimental, and when we asked Dr. Fleming point blank what he would do, he said without hesitation, "I would have the amnioreduction with septostomy." So, we scheduled the procedure for Tuesday at 3:30.
As I read more about TTTS later on Thursday, I was devastated. It turns out this is a very bad thing, especially if it occurs early in the pregnancy. (You can google it to find out more info). We have an evidence-based service that we use in researching the most current data available on a number of medical topics at work, so I used this to research the topic. The facts about amnioreduction are:
1. In patients with moderate to severe TTTS, it produces better survival than just watching and seeing what happens.
2. In many cases, the procedure has to be repeated multiple times because the fluid reaccumulates.
3. Everytime the procedure is done, there is a 10-15% chance of a complication that will result in the loss of one or both babies.
The largest pooled study looked at 223 women with moderate-severe TTTS. Collectively, they underwent 760 amnioreductions (ie, an average of 3-4 per woman). In 55% of cases, both twins were born alive, in 30% of cases one baby was born alive; in the remaining 15%, both were stillborn. In the first month, an additional 30% of babies die. Of the ones who survive, approximately 25% have neurologic dysfunction of some kind (ranging from mild developmental delay, to mental retardation and cerebral palsy). Keep in mind, these numbers are better than women with severe disease who undergo no treatment.
Up-To-Date, the resource I mentioned above, states that laser ablation is the definitive therapy for severe TTTS in women who are between 16 and 26 weeks. The procedure is only done at 15 places in the United States. A trial directly designed to compare amnioreduction to laser ablation therapy looked at 142 women with severe TTTS and showed better survival of at least one twin to 28 days (76% vs 56%) and to six months (76% vs. 51%). Neurologic outcomes at six months were also better (though admittedly poor): 48% of babies whose mommies underwent ablation had some kind of neurologic problem, versus 69% of babies whose mommies underwent amnioreduction. The link to the article PDF is located in the column to the right ("NEJM PDF").
Other studies that indirectly compared them also suggested better outcomes with laser ablation (I will spare you the details...I think you get the point).
So the bottom line is...I was crushed by the statistics and confused about Dr. Fleming's recommendation. Immediately after reading this, I went to church to practice singing for the Sunday service. I shared some of the above with Jessica, and it wasn't long before we were on our way home; there was no way we could sing that night. I talked to several friends and family and asked for prayer: health for Jessica and the "twinkles" (as Emily calls them); clarity about our next step; and peace through the process. Without seeing it coming, January 22, 2009 had quickly become one of the worst days of our lives.
Friday morning, I woke up early and got my work done quickly so I could attend to making phone calls. After asking for some advice from my boss, I made my way down to the OB/GYN department. I found an administrative assistant, who kindly took me to Dr. Tomich, who was in clinic. I asked if he would have five minutes some time during the day that I could speak with him about a personal matter. (Keep in mind that I had never met him before. He knew only that I was a resident in Internal Medicine and that my wife must be pregnant.)
With a gentle smile, he escorted me to a private office and asked what was going on. As I told him about the above details, he patiently listened and asked a few questions. When I finished, he said "You are right, this does not bode well. I cannot say how severe it is until I see the ultrasound, but there is no reason to settle for a less than optimal procedure just because the best one cannot be done in your hometown." He went on to tell me that the procedure is also done at Mayo, where he trained. He assured me that if needed, he could facilitate the referral quickly. I was thinking, "This is is helpful, I will give Jessica a call." But he wasn't done.
He asked me to follow him, and before I knew it, he was talking to his assistant about getting Jessica an appointment. She was very kind but said, "Your schedule is totally full Monday." he leaned over the counter to verify it. His assistant explained that he had an appointment available Wednesday morning (he is not in clinic on Tuesdays). He responded, "Not good enough." She explained that literally the only time he had available Monday was his lunch time. Without flinching, he said "Book it." As if this wasn't enough, he then handed me a card with both his pager and his cell phone number. "Call me if you need anything this weekend. I will be out of town. But please, call me if there are any problems."
I cannot imagine a more clear answer to your prayers. Which brings us to this morning. Jessica's repeat ultrasound will be at 11:30, then the appointment is at 12:30.