Quick update....

Today's appointment was another confirmation that your prayers are working! Summer looked great - nice and strong! Baby b was there but has grown slowly in comparison to Summer's growth. They said we are not in the clear yet but definately on the path towards that! I go back in 2 weeks for a level II ultrasond and an EKG of Summer's heart to make sure she is not under too much stress, pumping for both babies.

Thank you for your prayers, comments, texts and calls. We appreciate all the support! Thanks for reading the blog - it is amazing how helpful it has been for me to get my thoughts out on paper. And the emails I get from people around the world with their personal experiences with twins and other pregnancy complications has been impactful for us as well.

We will continue to share our journey as we navigate through this pregnancy, the thought processes that go with it, and the emotions that come with this pathway as well.

Blueprint

It’s funny how you can allow yourself not to think about certain things. To not delve deeper into a topic that makes you uncomfortable. Or makes you feel like you are doubting something that you are ‘supposed’ to believe. For me, I am an extremist. I either have to ignore it completely and not think about it and go into my own version of denial, or I have to do the opposite and learn everything there is to learn.

But sometimes, its nicer, easier to go the denial route. To ignore the question so completely, it’s as if the situation doesn’t even exist. I do this every time it rains. I honestly don’t want to know if my basement flooded so I refuse to go down and look. (Of course, my husband does but I’d prefer not to even know.)

But some questions are unavoidable. Sometimes, they keep resurfacing. Like the one haunting the background of my pregnancy. I come face to face with it every Wednesday at 9am. When the ultrasound technician comes in, turns off the lights, puts warm gel on my belly, and suddenly I see my babies on the computer screen. The question surfaces once again.

Was it a life?

There is Summer, kicking, turning, and generally dancing around showing me her strong heartbeat and developing body. I see her brain, her heart, her limbs – each measuring as they should at 18 weeks of age. Her stomach, her hands and fingers, her feet and toes – all shown clearly on the ultrasound. And then, there, sort of hiding in the background is baby b.

I told my grandma who recently lost her husband, my grandpa, that he was the first one to meet baby b. We both smiled and felt good about that sweet notion of them together in heaven. But after I hung up the phone with her, I asked Paul once again, “Do you think she really is in heaven? Was she really ever a life?” I nearly whisper the question – I feel bad just thinking it, let alone speaking it out loud. But Paul and I have had this same conversation several times. And we still don’t quite have an answer.

I have always believed that life starts at conception. But I have never really thought about it. I mean really thought about it – about what defines life. What has thrown me off is that baby b…has no heart. The fact that they call her the ‘acardiac twin’ reminds me every week that she doesn’t have a heart.

Can you be a life if you have no heart? If you were never going to develop a heart? It’s one thing to have developed a heart but it never started beating. Then maybe I could reconcile that it was a life but didn’t develop as it should. But baby b….never had a heart. Is a heart what defines being a life?

So I did some research to learn about when people think life begins. I wasn’t looking for prolife/prochoice type of information. I truly just wanted to learn the scientific aspects of a baby as it develops. (Although, I have to admit that I had to hunt to find somewhat objective information that wasn’t pushing one side versus the other.)

Here is what I found…
Over the centuries, they have looked at several bases for determining human life; viability, brain waves, movement, and heartbeat.

Viability:
They used to think that a baby’s life was determined by the age in which it was able to sustain life outside the mothers’ womb. But it turns out that that age changes based on the medical interventions available. 40 years ago it was 30 weeks, 20 years ago it was 25 weeks, now it’s 20 weeks. The babies aren’t changing; it’s the medical know-how that changes.

Brain Waves:
We don’t know when they start but they can be measured at 6 weeks.

Movement:
These are first seen around 6 weeks.

Heartbeat:
This starts around 3 weeks.

So how do we determine when life starts? There are religious views that base it on the beginning of the soul but that is immeasurable which makes it hard to prove. And scientifically, each of the aforementioned developmental stages seem important but how do we decide which is most important? A heartbeat? Brain waves? Breathing?

So they began to look for a single event, a time that could definitively say that before this, you did not exist, but after this…you did.

And what they landed upon was…conception.

Before conception, you did not exist. It is at that moment that the unique combination of chromosomes that define you first came into existence. This is what differs from another group of cells that replicates with no purpose (ie. a tumor). (The “they” referred to above, is the medical profession over the last few centuries – before legal, government and state legislation got involved in determining life).

Hmm, that’s interesting. But it doesn’t quite answer what it means if the baby, that chromosomal blueprint for a life, didn’t include a heart in the plans, (something undeniably required for life). But it does give me a sense that she was a life, she was supposed to be a life.

Actually…I don’t know. I know I’m supposed to believe that she was. And I want to. And probably will if for no other reason than I’d rather believe that than the alternative. But I will admit that it’s hard for me to comprehend that. And that’s why Paul and I go round and round on this topic – both of us have a hard time with the acardiac part. Life begins at conception. Yes. But it needs a heart to be a life. Yes. So did she die? How could she die if she never had a heart in the first place? And the unending loop continues. (Side note: I told Paul that I would start this blog but that I wouldn’t be PC. I would write how I feel. It’s the only way I know how to write.)

It bothers me. This whole heart/no heart life/not life issue. It gives me a stomach ache to think about. It brings tears to my eyes. Of frustration. And since I have given it so much thought, I am forever unable to go back to the bliss of denial. Of ignorance. And that’s ok. I might have to accept that my thoughts are not God’s thoughts, my ways are not His ways. My sister in law sent me a bible verse that read “Trust in me, not in your own understanding.” That’s hard for me to do. It’s easy for me to have faith in the big things, creationism, Jesus, even miracles. But the little things. The things that seem like they should have a definitive answer – those ones trip me up. Especially when it deals with something so personal. So raw. So deep in my core. My own child.

I guess that’s what faith is. That’s what trust is. It’s the hard part, but I think it’s the part that gives you peace. And through this search for answers, through the scientific and faith parts, I think I do believe that she was a baby. A mass of cells that had the blueprint to become a life. My baby. Instead, she met her creator first. And my grandpa. And that brings me peace.

Butterflies

My father in law recently told me about the butterfly effect. Of course I had to look it up on the internet to see if it was true. And sure enough, it said that if the conditions are right and a butterfly flutters its wings, it can start a hurricane on the other side of the world. How they prove that, I don’t know. But they did explain it on Wikipedia - so it must be true.

The very next day, my mother in law sent me a story about butterflies...

A man was observing a cocoon as a butterfly was struggling to emerge from it. When it stopped, the man wanted to help and took a small scissors and cut the butterfly free. He snipped the cocoon to make the hole bigger and the butterfly quickly emerged! As the butterfly came out the man was surprised. It had a swollen body and small, shriveled wings. He continued to watch the butterfly expecting that, at any moment, the wings would dry out, enlarge and expand to support the swollen body. He knew that in time the body would shrink and the butterfly’s wings would expand.

But neither happened.

The butterfly spent the rest of its life crawling around with a swollen body and shriveled wings.

It never was able to fly…

The man, in his kindness, thought he was helping but what he didn’t know was that nature’s way of strengthening the wings of a butterfly is through the struggle to emerge from the cocoon. By struggling, the fluid in the butterflies body is forced into the wings, giving it their strength.

There are so many examples of this – of strength coming through struggle. Even trees get their tremendous strength through withstanding the force of the wind. This was proven by an experiment to grow trees in a greenhouse. They all were soft and wilted as they didn’t have any wind resistance to develop their strength.

I asked Paul if he thought Summer was the strong one struggling through this or if it was us. It sure didn’t feel like us. Of course, Paul being the diplomat that he is said it’s both of us. All of us. “Maybe Summer will have an exceptionally strong heart since she is pumping her heart for two.” Paul said, “Kind of the what doesn’t kill you makes you stronger idea.”

I don’t know but it makes sense to me. And I think Summer will be the kind of life that has strength. Maybe it won’t be physical strength, maybe it will be emotional strength. Or spiritual strength. Or the kind of strength that her friends will draw upon when they need help. Or the kind her mom will get just by looking at her and being reminded of Summer’s struggles for life before she was even born. She has already created a powerful hurricane in our lives – besides the chaotic, stressful and anxious aspect that has come from TRAP sequence, Summer has given us a new perspective, a desire to support other parents in similar situations, and the humbling position of asking for prayer from anyone who will listen.

By helping the butterfly by easing its struggle, we actually steal its purpose in life from it. But by allowing it to go through its struggle, it is given the power to create hurricanes.

I want to be like that. I want to be that butterfly that gets through struggles and has the power, the strength in my wings, to create hurricanes. I want to not take the easy way out - in my current situation, I have no choice, but in other life situations I certainly do.

Like the man who watched that butterfly, I can take comfort in the promise that God gives us; that he won’t allow us to go through more than we can handle. He can only promise that if he is acutely aware of every single struggle that we go through. I think he is aware. And he watches. And, instead of cutting us free from our cocoon, he allows us to develop strength. The kind of strength that can start hurricanes.

Gaper's Delay

Cases like mine don’t make the internet. That’s what the doctor told us on Wednesday. This was good news actually. Because when I researched about TRAP sequence, all I read was horrible statistics, heartbreaking stories, and gruesome pictures. And of course, I was convinced that each of those was applicable to me. But the doctor told me not to read about that.

Cases like mine don’t make the internet.

At first I was so relieved to hear that. But the more I thought about it, the more I realized how unfortunate that was. I can’t tell you how many times a day I go online to learn more about something. Whether its for work, for my own personal knowledge, or to settle an argument. It’s such an incredibly helpful invention, knowledge literally at your fingertips. But why, when you look up something about a disease, condition, or disability does the information seem to always omit the positive side of things?

I work at a national Down syndrome awareness center (www.gigisplayhouse.org) and one of the things I do on a daily basis is deal with new parents. Parents who just received the diagnosis of Down syndrome for their child, either in utero or a few days old. The first thing I say to them is “Congratulations!” Not because their baby has Down syndrome but because they just had a baby. And that’s what you say to someone who just had a baby. The response I nearly always get back is “Wow, that’s the first time someone has told me ‘congratulations’. Everyone else says ‘I’m so sorry’”. It’s hard for these parents not to view their child as a diagnosis instead of a baby when people keep apologizing to them.

And when those parents go online for information, the websites that come up have nearly all medical information. Nearly all facts and statistics about disabilities. Limiting abilities. “Your child might get autism. Your child might have celiac disease. Your child might develop leukemia.” But isn’t that true of the general population? My child might get autism. My child might get celiac disease. My child might have leukemia. A doctor, regardless of the amount of medical training, can’t predict that – not for my child or any other child.

I recently saw the results of a survey where parents indicated that they would like to see potential and quality of life rather than only the medical consequences associated with a diagnosis.

We tell parents of babies with Down syndrome not to look up the info online (though it is certainly getting better and having more positive information out there). Just like my doctor told me not to look online. But the problem is our human nature. Some of us are strong enough and rational enough to not look at the information. To not search for hours, reading the same negative statistics and the same difficult outcomes. My husband is one of those strong people. I am not.

It’s like a car accident holding up traffic. Usually, by the time you get to the source of the accident, the cars involved are pulled over to the side, help has arrived and traffic actually could flow normally. But it doesn’t. Why? Because people want to see. There’s even a term for it – gapers delay. The definition is ‘a traffic jam caused by slowing down or stopping of cars to look at an accident on the side of the road.” And it’s so annoying when you are just waiting and yet once you are up to the site of the accident, you tap the brakes a bit as you look to see the taillights crushed on the ground, the stretcher being put into the ambulance, and you assess the situation and come up with your own version of what must have happened. You might send up a prayer, but you still crane your neck to take in all the details you possibly can.

That’s how I felt. I couldn’t tear myself away from the internet – I was causing my own personal traffic jam, not allowing myself to move forward. From the negative statistics and the gruesome photos. But then the doctor told me that cases like mine don’t make the internet. Why not? In all reality, all I was searching for was a case like mine. All I wanted to read was that it was possible for baby B to grow slow enough to not warrant surgery. All I wanted to know what that it had happened out there to someone else – if it happened to just 1 of those other moms out there, then there’s full reason to believe it could happen to me. But it wasn’t there.

Here’s how the doctor put it…

If there were 100 women that came in with TRAP syndrome and 80 of them needed surgery, then the medical journals would write about 80 women who had TRAP syndrome. There would be no mention of the 20 who didn’t. Who went on to have their babies, maybe prematurely but still healthy.

I know I’m not in the clear yet. And I know that things can change at literally any moment for my situation. But it’s still comforting to know that there are those other moms and dads out there going through this who will have a positive outcome. I’m not saying that I, or parents of children with a developmental disability, should see the world only through rose-colored glasses. But I believe you can be positive and be realistic at the same time.

I just think that instead of only representing the negative part of the picture, add the human side. Instead of just including the research on the outcomes of those that needed surgery, include the ones that didn’t need surgery at all. Instead of just saying that a child with Down syndrome will have trouble learning, say that they can learn, they will learn, and that they can do nearly everything you and I can do.

Picture this…you are recently diagnosed with breast cancer so you go online with a heart full of fear and anxiety. You click on the first breast cancer link that comes up. But instead of reading about how the disease metastasizes, or how great of a hospital XYZ is, what if it showed the picture of a woman and her children and then described the incredible story of how she beat it and is now fully living life again. THEN, when you read the rest of the info about the disease, you are reading it through the filter that it is a beatable disease. They say that a positive attitude is one of the most important things to have when battling a disease so why not give people some reasons to have that positive attitude?

What if when you find out that your child is going to have Down syndrome, instead of reading about the disabilities that he/she will have, what if you saw a video of an adult with DS talking about how she works, lives on her own, is married – is more like us than she is different! Then you would view your baby as your gorgeous precious gift. Not as a diagnois. Not as a burden. But as potential.

What if a case like mine was in the internet, and a mom finds out she is pregnant with twins, then loses one, and then finds out that she has TRAP sequence. What is she goes online and sees a case like mine, and finds the hope that she so desperately needs to hold onto as she prays for her baby in her belly.

Hopefully, that will soon be true. I know the world of Down syndrome and other intellectual disabilities is really doing a great job with trying to put the human face to the diagnosis instead of just a medical statistic. That’s why I love my job. Everyday, we get to help parents reframe their mindset and see their baby as a precious gift of potential.

I know this altruistic wish for life isn’t necessarily going to happen overnight or worldwide but if we are able to take that split second when we hear the bad news to remember the disclaimer; that cases like mine don’t make it on the internet. A disclaimer that says, the information found here does not always represent the whole picture. It can cause gapers delay - a personal traffic jam preventing us from moving forward in life. The disclaimer that works best for me is to remember that I don't have to trust only in the internet. There is a much more powerful, more knowledgeable and more trustworthy Source to place my trust. To draw my Comfort from. I rest in that Truth.

Roller Coasters (appt. part II)

I’ve always been a fan of roller coasters. It’s because of that feeling you get in your stomach when you are on the top of the track, looking over the thousands of people below, strapped into a mass of metal, knowing what’s coming next. You put your hands up, and begin screaming as the wind splashes on your face and your stomach does flip-flops in turn with the track. There are a few key elements that makes this fun; Number 1, you are strapped in. Number 2, you know what to expect – you know where the turns are, the flips, and where it ends. Sure, you are having faith that the brakes will work, but other than that, you are pretty sure of what’s going to happen.

Paul told me today that he feels like we are on an out-of-control roller coaster.

A month ago, we were told that we were keeping an eye on baby B to see if it was growing. The Dr said she was 99% sure it wasn’t connected because she couldn’t find a blood supply – this was good news because a connection was worst- case scenario. When we went last week, the u/s technician said that she didn’t think baby B had grown at all in the past month. I felt like a huge weight had been lifted off our shoulders. This was the confirmation we had been waiting to hear. However, it came with a small caveat; “but the doctor will be in to take a look herself.”

The rollercoaster began its ascent uphill.

When the doctor came in, I smiled at her and said, ‘since baby B isn’t growing, am I no longer considered high risk?’ She looked at me with the kind of look that you don’t want to get from a doctor. The kind that says, I hope you’re enjoying your ignorance because I’m about to change that. She took the ultrasound handle and said, ‘I want to show you something.’ Paul and I both drew in a deep breath. As she navigated around baby A (we hadn’t named her yet), the screen came to a rest on a large dark circle.
“See this? That’s a skull. See this? That’s a spine. That wasn’t there before. So to answer your question, the baby is still growing. In fact, it has doubled in size since the last time you were here.” The tears started coming. This was the part of the track we weren’t expecting. Just a few minutes before, we thought we were getting off the ride altogether.

“So what does that mean?” I asked as she handed me a tissue.

“Well, we would refer you to Cincinnati. They will discuss a procedure with you that consists of searing the connection between the babies.” Cincinnati? Another unexpected turn in the rollercoaster track.

She then left to call ‘Cincinnati’ to discuss my case. When she returned she said that based on the size of baby B, they recommended I be monitored weekly and when it gets to a certain size, then I would go to Cincinnati.

Just as quick as we got on that turn in the track, it straightened out again.

The next week was spent asking for prayer, trying to figure out what we were praying for (that Baby b stops growing, that we can have the surgery which has a high success rate, that the doctors were somehow wrong?), and scouring the internet for information. I had done so much research on the procedure, that I had braced myself for the news that we would be going to Cinci.

We went in this morning, anxious to hear Summer’s heartbeat. When we heard that sweet sound, I let out a breath I didn’t know I was holding. Then the doctor came in and changed the roller coaster track once more. “I am not impressed by the growth of baby B relative to baby A. You do not seem to be on track to need the surgery.”

While this was good news, at that point, Paul and I weren’t so quick to allow our emotions to feel his words without some skepticism.

“Are you sure? How do you know? What about what the doctor said last week? What about the scary things I read online?” We were once again brought into the conference room where we talked at length about all possible outcomes. By the time we left, we felt like we trusted his assessment albeit with a certain amount of hesitation. In the car Paul said, “It’s hard to know how to react when every week we hear something different. What will they say next week?”

On the other hand, with all the prayers that we know are being raised on our behalf, why should we doubt God’s answer to them? If you are one of the ones that pray, please continue to do so. The doctor told us that right now, we are in the best possible situation with regard to the size of baby B. He didn’t think that we would need surgery and he was hopeful that baby B’s growth would be slow enough that Summer would not have complications enough to send me into preterm labor. This is a huge answer to prayer! I will continue to be monitored with weekly ultrasounds and fetal echocardiograms.

We are still on the roller coaster ride. And while we don’t know where the next turn is, if we are on the way up with a scary plunge in our near future, or if we are nearing the end, the one thing that we do know is that the straps that are holding us in tightly, are the hands of God. We fully believe that He is not only holding us in this situation, but that He will carry us through it, whatever the outcome. We can have faith that He is driving the roller coaster, He knows the track, and He has control of the brakes. (That’s more than you can say for the rides at Great America!)

Life is crazy enough without riding the emotional roller coasters too. I haven’t figured out how to do that (I’m the kind that literally cries at commercials. The same ones. Every time I see them), but I’m pretty sure it starts with faith. With trusting in God’s plan for our lives, even when we don’t know what it is. So while I can’t quite say at this point on the roller coaster, let’s sit back and enjoy the ride – I can say that we are in good hands, and as promised, we will be Held.

baby B (appt. part I)

At 10 weeks, I lost baby B. I only knew for 2 weeks that there even was a baby B. I had actually prayed for twins (I know, who does that), but I have always loved the idea of having twins, so I was certain that it was meant to be. Sort of a 'you asked for it!' from God that I was happy to take on. So when I found out that she died at 10 weeks, I cried. I felt a loss. I felt sad for her twin sister for what could have been. I went for several ultrasounds after that and every time, I asked if they heard a heartbeat on baby B. Rationally, I knew that it wouldn’t just somehow appear, and yet part of me still held out hope that maybe, just maybe, the ultrasound technician had missed it.

Since then, I have tried to focus on baby A, baby Summer. And yet, in every ultrasound I see baby B and part of me is saddened by it. Now that we know that Summer is a girl, baby B has become Summer’s twin sister. We haven’t named her (which apparently many parents in this situation do), but just knowing that she is Summer’s twin sister has changed something about the situation.

The tables have turned now, and it’s hard to reconcile the right emotions to go along with that change. Baby B, the same baby that I cried over, the same baby that is (was?) Summer’s sister, is now described as a parasite. As an ‘acardiac twin’ that is endangering Summer’s life. When I read about TRAP sequence and read about acardiac twins and how they harm the ‘pump twin’, the rational part of me prays for Summer – that she would be strong, that baby B would stop growing, that God would produce a miracle. My rational side makes me devour the information that is on the internet (to the point where Paul had to take the computer away) and learn everything there is to know about TRAP sequence. I created a list of questions - which could more accurately be considered a list of fears that I needed the doctor to alleviate. My rational side wanted answers, wanted statistics, wanted to know how to protect Summer from the acardiac twin. (by the way, acardiac means ‘no heart.’)

I walked into the ultrasound today with my list of questions in hand, a stomach full of butterflies, and holding my breath until I heard Summer’s heartbeat. Once I heard that proof of life, and saw that she continues to grow, my eyes shifted to baby B. My list of questions faded away. My butterflies were replaced with…silence. With a silence of what could have been versus what was.

As I watched baby B, which looks like nothing more than a conglomeration of body parts, I began to struggle with how I felt about her. No longer am I hoping for a heartbeat. And yet, I can’t quite view her as a parasite. My rational side knows that this being that started out as a life is now really just a mass of tissues that is connected to a blood supply – that’s the only reason it’s growing. Like a tumor. And yet, just a few weeks ago she was my baby that I cried over losing. And last week, upon learning the gender, she became Summer’s twin sister. And now I am supposed to see her as a parasite? How do you reconcile those emotions? How do you feel loss and sadness, fear and anxiety at the same time – about the same thing? Is she my baby that died or is she a threat to my yet-to-be-born baby? Can she be both?

As it turns out, my rational side didn’t stand a chance against my human side - the side that still sees baby B as just that. My baby. Not as a parasite, not as a leach. Yes, she is threatening the very life of Baby Summer but not on purpose. Not with malicious intent. The doctors can call her a parasite. A mass of cells that will continue to grow until the blood supply disappears (at delivery). But to me, she is baby B. A baby that Summer is risking her own life for by pumping her heart for both of them. Will we name her? Maybe. Not right now. Right now, she will be our baby B.

Held

Sometimes a little perspective is all you need to bring yourself out of fear, depression or self pity. Perspective means ‘the ability to perceive things in their actual interrelations.’ The danger of losing perspective is that you see your experiences in relation to YOU, to YOUR life. And that’s not reality. It feels like reality, but it’s not.

When I first heard about TRAP syndrome, I read that this rare condition happens to 1 in 350,000 women. It came after a week of crazy not-so-good-news and I thought, “What in the world is going on? Why is this happening to us?” It wasn’t that I wanted it to happen to someone else instead of me, I just never expected it to happen at all.

I heard a song yesterday, Held by Natalie Grant, that reminded me of the promise that God gives us – the promise not to spare us from pain, but to comfort us in the midst of it.

This is what it means to be held
How it feels, when the sacred is torn from your life
And you survive.
This is what it is to be loved and to know
That the promise was that when everything fell
We'd be held.

I was quickly reminded of, and humbled by, situations of people I know and love around the world.
*Of friends who can't get pregnant at all.
*Of my grandma who lost her best friend/husband and can't seem to find the
joy in life again yet.
*Of a friend who lost her 2 yr old son to a senseless act of violence
(does it get worse than that?).

Rather than being 1 in 350,000 women with a rare pregnancy condition, I could be 1 of 7 - the number of people in the world who go to bed hungry. Mia could be 1 of 50 – the number of American children that are homeless each year.

A little perspective reminded me that my blessings far outweigh the challenges in my life. That I don’t have any reason to complain. To ask for prayer? Yes. To complain? No. I was talking to Paul about this and he said the best way to keep your perspective is to be thankful. He’s right; it’s hard to complain, be in self pity, or be depressed when you look around you and see all the gifts you have been given. When you begin to count your blessings.

I don’t think I could ever count that high.