The Letter

We received “The Letter” from CCRM over the weekend. I’m referring to the annual invoice in which CCRM requires us to either pay $300 to store our three remaining embryos for another year, or to provide our signatures so that the embryos can be destroyed.

Note: Because I have a genetic condition, we cannot donate our embryos to another couple–I checked with CCRM’s genetic counselor, Danielle. Our options are to use, destroy, or donate for research.

When we received The Letter last year, we decided to pay the storage fee “just in case.”  Just in case what? I guess we were worried about making a rash decision and then having regrets. And now even though we have talked for months about signing away our rights to these three little embryos, it’s a sobering thought to actually have our signatures notarized. As much as I want a sense of finality, I have a tiny bit of fear that I’m making a decision I will later regret.

Before infertility, I had long thought I might like to have three children someday. Both of my parents have two siblings, and my grandparents’ lives always seemed so full with three kids and eight grandchildren. Two parents + three kids always felt to me like an ideal family.

But honestly, a rough pregnancy and our girls’ health complications have caused me to feel very negatively about going through any of it ever again. I’ve been robbed of any desire to repeat the process.

My pregnancy was filled with 8 full months of daily morning sickness (not complaining about this–I know how lucky I was to have experienced it at all!), dislocating both kneecaps, three broken bones after falling in the shower, invasive left knee surgery, a total of 11 days in the hospital, three months on almost complete bedrest, wheelchairs and walkers, sciatica and enormously swollen feet and legs (I was prescribed a water pill after giving birth and lost FIFTY-THREE POUNDS of fluid in two weeks–no joke!).

Then September 13th arrived, the birthday of our gorgeous twins and those perfect first three weeks of normalcy. The pain and discomfort of pregnancy subsided as my body healed quickly now that it was not allocating resources to my babies. Although we were sleep-deprived, we felt like we were in a wonderful dream. And then, the drama resumed:

  • Eight fractures in about a month from little to no trauma.
  • Complete and utter fear when thinking about handling our own babies (our absolute emotional low point was holding our newborn niece in our arms the night she was born, and then going home knowing that we could not hold our own newborn babies because we might cause a fracture).
  • Starting PAM infusions… seeing our kids hooked up to IVs.
  • Clubfoot treatment, first surgery (double tenotomy), months of casts and braces.
  • Craniosynostosis… seeing our child emerge hysterical from a 7-hour surgery during which her head was cut open from ear to ear and a piece of her skull was removed.

I must add, I know so many parents have had to watch their child go through so much worse. I follow bloggers who have kids with cancer, and I even have a friend whose baby just had open heart surgery last week and is still on a ventilator. My heart goes out to parents of sick kids, as I clearly do not have half the strength that they do. The past 18 months of seemingly nonstop medical intervention has been draining, to say the least.

So that’s why I was pretty surprised when we casually discussed “The Letter” last weekend and my husband said, “Maybe Violet and Layla will need a little brother or sister someday.” I felt my heart drop into my stomach because this was the first time he had ever expressed an interest in further expanding our family. In fact, he has always seemed pretty opposed to trying to have another child.

I stewed over it for a few days, and then broached the topic again. During those couple of days, I searched my soul to try to unlock my feelings about the idea of another FET. All I felt was dread thinking about it, honestly. Sure, it would be cute to have a little baby boy toddling around, looking up to his big sisters (what I pictured in my head was a little boy, but we don’t know the genders of our remaining embryos). But then I thought about the fact that he or she would have a 50/50 chance of having OI and that it’s a spectrum disorder, so his disease could be more or less severe than V&L’s. I thought about the possibility of more complications, like Violet’s clubfeet or craniosynostosis.

What I realized is that I am spent. I would not change a second of the past 18 months, because those experiences have shaped our family and we are stronger for having gone through it. But I can’t go through that with another baby, and I know it from the depths of my heart. I know 100% that the best choice is for us to sign away our embryos, to eliminate any future waffling and to move on with my life. I had my fallopian tubes ligated during my c-section, so the three embryos in question are our last chance at expanding our family.

So when I broached the topic again with my husband, I put it all out there. And thankfully, he agreed. He said his remark was just a fleeting thought and that when he thought about the ramifications of having another baby, he was no longer on board. We are comfortable with just being “Violet and Layla’s parents,” and we are planning on making it official next week by meeting with a notary. Although I am a tiny bit scared that I will hate myself someday, right now this feels right. And I have to trust that feeling.

Seeking Balance

My babies are over six months old, and they are becoming more delightful every day. I’m not sure if all moms feel the way I have, but bonding with my girls has been gradual. I loved them from the moment I first laid eyes on them, of course, but the bonding process was not immediate. At this age, I know what makes them laugh and what makes them mad. I recognize when they are tired and when they need to be held. I know which toys they like, and I recognize their hunger cues. I comfort them and help them to feel more secure, and their eyes search for me when someone besides my husband holds them. Suffice it to say, I am enjoying them more and more as they grow more interactive.

Life seems like it is getting slightly more manageable. We still have clubfoot treatment in our future, but we are past the serial casting process and the tenotomy, so the frequency of those appointments has lessened. We still have Pamidronate infusions, but those occur only every eight weeks. We still have bi-weekly visits from a physical therapist, but those appointments are no big deal. Their next well visit with the pediatrician isn’t until 9 months. They are recovering nicely from their RSV. We will have OI clinic annually and will hopefully have no more broken bones in our future. We have babies sleeping 10-12 hours per night in their cribs and napping during the day. Life has gotten easier, and I am grateful.

Now I feel like it is time to re-focus on myself. Of all the members of this household over the past six months, I have been my own absolute last priority, and it shows. During my pregnancy, I gained 35 lbs. I can’t believe I didn’t gain more, as I was absolutely starving toward the end and ate tons of (junk) food, both to satisfy my hunger and to help with the morning sickness that lasted my entire pregnancy. I was so incredibly swollen afterwards from pregnancy and my other injuries and lack of activity, I had to take a presciption medicine to help flush me out. So in the two weeks after V&L were born, I lost 53 lbs. My body maintained that weight for about a month, despite me eating whatever I wanted, as it was working hard to recover from childbirth and my injuries. And then the weight started coming back on. Over the past five months, I’ve gained back about 20-25 lbs. I blame it on depression from all of the medical intervention needed for my girls their first three months of life, all of the pain they were in and the helplessness I felt, having to quit the job that gave me social interaction, and my own pain and inability to be active because of my injuries. In addition, I was feeling overwhelmed by life with twin infants. I comfort ate, and I don’t blame myself for it because I was at my breaking point. But it’s time to change.

So I have joined Weight Watchers Online, partly because my friend LisainSK has had a good experience with it. Hopefully I can achieve similar success. When all 53 lbs of that weight was gone right after childbirth, I felt fantastic. So that is my goal for now. I’m tracking the things I eat and trying to plan our meals around more fruits and vegetables. I can say it certainly hasn’t helped to spend all day at home, with my kitchen just a few feet away. And it hasn’t helped to enjoy a rum&diet or two with my hubby in the evenings out on our deck after our babies are asleep (2 oz of rum is 5 points!). But this change is needed for my mental and physical health. Moderation and exercise should help me to shed some pounds before the really sweltering summer weather gets here. I’ve been walking outside with the babies more often and increasing my mileage, and I will give myself an expectation of doing that every nice day this spring/summer.

A friend of mine, who is 31 years old (only one year older than me), suffered a severe stroke near her brainstem on March 11th followed by a series of smaller strokes. She is basically comatose, with a trach and a permanent feeding tube, lying in a hospital bed 20 miles away from me as I type this. She was thin and in good health, and basically the stroke was bad luck, but it is a definitely a wake-up call to me that I need to focus on my health. I want to be here as my daughters take their first steps, walk into their kindergarten classroom, move on to middle school and all educational institutions beyond, meet their first romantic love interests, and accomplish their goals. So I will be keeping that in mind as I start making myself a little more of a priority around here!

A Surreal Problem to Have

We are joining the bandwagon of trying to figure out what to do with our three frozen embryos. What an amazing problem to have–when we were awaiting our Day 5 report after retrieval, I thought it would be amazing if we only had one or two blasts. I never dreamed that 18 months later, we would have two babies and three frozen blasts in the freezer at CCRM. How fortunate we are! This week we received the notice from CCRM that we need to decide whether to pay for another year of storage, or somehow discard our embryos.

Even if I would want to try for a third baby someday, it is a really, really bad idea. After my accident last May, it became apparent that my body cannot make enough calcium to nurture a baby and keep my own bones strong. My joints also loosened and caused my kneecaps to dislocate. I also became very iron-deficient, which seemed like the very least of my problems at the time but could pose a danger to any future embryos in my body. We’ve determined that personally for us, we are not comfortable with the idea of someone else carrying our embryo for us. It’s just not for us. There is no way to tell whether my body would behave differently with a singleton pregnancy, but no doctor can tell me any differently, so I don’t really want to find out.

Then there is the OI issue. My babies had a 50/50 chance at inheriting the gene, and they both have it, so that tells me we either have really bad luck or it’s a really strong gene. A third baby would have the same 50/50 shot. In the thick of the fractures last October, I felt briefly like I was at my absolute breaking point. I remember a day when my husband and I drove to our pediatrician’s office to pick up several cases of formula that their Enfamil rep had kindly hooked us up with, and we decided to grab some lunch nearby while a family member watched our babies at home. We were both so exhausted and emotionally spent, we barely even spoke. I think he would agree that we were both at the lowest point of our lives, which was so opposite of how we were supposed to feel as new parents. In retrospect, I know that we were “only” dealing with broken bones and not so many worse afflictions involving survival, but it seemed like the end of the world in that moment. I do not ever want to repeat that experience, so that has turned me off even more from wanting another child. We can test the frozen embryos for OI, but then that’s a moral issue for me. I have OI, so I might not be here if technology had been more advanced when my mom decided to conceive me. We may choose not to transfer our frozen embryos, but it won’t be because of OI.

So now we are wondering about embryo adoption. I need to talk to CCRM to find out whether my OI even makes us eligible for this. Would an infertile couple want to deal with such an affliction? OI varies SO much from person to person. Even in my family, those of us who are affected have had vastly different experiences. Some of us have only fractured a few times, some of us have had more like 25-30 fractures (which in the grand scheme of things is still relatively mild). I’ve had 12, so I’m about middle-of-the-road for my family. Some of us have lingering side effects, like my loose joints that cause kneecap dislocations, but some of us have no side effects. All I’m trying to say is that there is no way to predict how mildly or severely our frozen embryos may be affected. They will all have Type I if they do have it, which means there will be no skeletal deformities, but they could have a few fractures or dozens. Would dealing with this be better than continuing with life childless?

If we can’t or decide not to pursue donating our embryos, I would want to know whether our embryos could be used to benefit OI research. That would probably be the next best thing to actually using the embryos for the purposes of conception. But I want to research the other paths first.

Or of course, we could simply pay the money to keep our embryos frozen for another year. My fear about this is that as the memories of my accident and recovery fade, as our daughters grow strong and seem less like the fragile little creatures that they were last fall, my resolve about not conceiving again might weaken. I find myself wanting a resolution to avoid mixed feelings later.

It’s a lucky but difficult position in which to find ourselves. We have some thinking to do, but getting this all down has at least put all of our options in a place other than our heads.

Overwhelming

I had to chuckle when I read the following comment by my friend MyTwoLines: “I am so impressed by all you do taking such good care of them…it must be overwhelming but you seem to do it with ease!” Thank you for the compliment, MTL, but this could not be further from the truth!

I just want to put it out there: most of the time, I feel like I’m in survival mode. I feel outnumbered. I feel like I’m failing because I’m not able to give as much one-on-one time as I want to each baby. There are a list of “extracurricular” things I want to do during the day with my babies (tummy time four times, feeding them oatmeal, reading books, playing music, sitting in the bumbo or in the corner of the sofa, nursery rhymes, baby ein.stein, having the two of them play together in the activity gym, taking them for a walk in their stroller). Very, very rarely do I get all of that done. In fact, I would say never. I do some of those things, but the hours pass and I just can’t get it all done before they are zonked out for the night. Never mind the required feeding, burping, bathing, changing, rocking, etc that goes on around here. I am not complaining one bit, but just being honest. These babies are amazing and getting to be a mom is incredible, but the journey so far has been pretty tough.

In a span of 29 days from October 7-November 6, my babies broke eight bones. That is enough to make anyone feel overwhelmed. We were quite abruptly introduced to pediatric emergency rooms, narcotics, pavlik harnesses, orthopaedists, casts, and x-rays on a weekly basis. I had to become a lion who refused to surrender my kids to “protocol”–no unnecessary x-rays, no unnecessary touching by staff, no unnecessary vitals. I’m probably infamous at our local children’s hospital by now, but that’s what this experience will do to you. I was just trying to save them from additional pain. Along with the bone issues, we were simply first-time parents trying to adjust to the shock of having two tiny babies (with days and nights mixed up) who depended on us for every need. Then throw in the clubfeet treatment, bone-strengthening infusions, pediatrician appointments, and physical therapy, and you have one seriously overwhelmed mama. I have had many tearful breakdowns over the past nearly five months. Despite my intense love for my babies, at times this has all felt like too much. And I grieved over the fact that instead of enjoying this time, I have spent a significant amount of time stressed and sad and helplessly watching them hurt.

Thank goodness, our world changed for the better once we discovered a medication that helps to strengthen babies’ bones. It has literally been a miracle drug for us so far. But despite the medicine, we walk on eggshells with our babies–not allowing them to be held by many people, feeling our hearts thump when they cry, and being mindful of their fragile bones in everything they do. And yet, we remind ourselves how lucky we are to have twins and not have to worry about their breathing, their weight, their heart rate, or their lung development. In that way at least, we are lucky.

This post is just meant to show that I am not handling this with ease. Quite the opposite, actually. I feel like I’m just marching forward, putting one foot in front of the other, checking things off a list, doing what I have to do. I take Violet to the next step in her clubfeet treatment. I take them both for the miracle drug infusions every eight weeks. I take them to the pedi for immunizations every few months. I work with their physical therapist to help them get stronger. I take care of their basic needs and play with them and hug and kiss them. And I’m trying to enjoy these days while our babies are small, because I know that time is fleeting and we won’t have any more children. During tough times, moms find strength they didn’t know they had. And that’s what I’m doing!