This sleeper outfit

I put away the last of the newborn stuff the other week. Sorted into piles to either save as keepsakes or to try and sell or pass along to friends. It will be the last time that a baby in this house wears anything as small as newborn size. This sleeper was among the ones to save. It’s the only new newborn outfit that I had bought that R wore. It, however, was not bought for R. It was bought for his big brother.

During the pregnancy we lost, we had made it to 13 weeks, had our 12 week appointment the week before. Everything looked fine, at the time. That held breath you do when you’ve had a miscarriage before finally lifted and I was starting to feel like the pregnancy might be a real thing. C and I had gone to Target and found this sleeper on sale. It had space ships and was gender neutral in color, as we hadn’t known what we were having. So, I bought it. Later that day the nurse from our OB office called with news that a screening test showed a possibility of Trisomy 13 and started the most nerve wracking 6 weeks of my life.

That sleeper than sat buried up on a top shelf in C’s closet, tag still on, for more than a year and a half. I had figured worst case if we did not have another child I would gift it to someone. All while I hoped that we would have another child to wear it.

It was what R wore home from the hospital. It was a common sleeper for many of his pics because it was the one new newborn outfit he had. The others were either gender neutral colored girl ones from when C was a baby, or ones passed on from friends.

He was the first and likely only one to wear it. It was also the one baby item I bought for a very desired baby who didn’t make it here. R is certainly not a replacement for the child we lost. But he does exist because his brother was lost.

More than 2 years after buying this sleeper, I write this while rocking a beautiful, happy and healthy baby to sleep. Life is surprising sometimes. It never takes you on the road you plan out, sometimes not even on the ones you head out on. But today, while I hold one child forever in my heart, I’m glad I can hold another in my heart and arms.

Long time since I posted…

2016 ended up hitting me harder than I had thought it would. Grief is no fun and 2016 was about the worst year of my life. I found I ended up having little time to do much besides manage, manage to do dishes and laundry and necessary life maintenance, manage to care for my daughter. This blog was not part of that managing. And I did make it through that first hard year.

2017 was just plain busy and tiring. We found out in early March, just before what would have been the 1 year anniversary of our pregnancy loss, that I was pregnant again. Horrible morning sickness and extra tiredness compared to past pregnancies, an opinionated 3 year old to fight with daily, a volunteer activity, a move in the fall, and new baby less than 2 weeks after a move, that’s basically where I was in 2017. Busy with too much to blog even if I had words to share.

2018 I resolve to get back into writing and thus back into blogging as some of the writing rambling about my head is related to parenting, kids, and military spousing. I’m going to do so with an active 4 year old whose as stubborn as she’s always been, a new baby, a new place to explore and finish settling into, a husband who will likely be away more than home this year, and very hopefully without another move this year.

Here’s to hoping this goes, well or not, just that the words happen.

Congratulations

So many people assume that a positive pregnancy test leads to a baby. It surprises me how many people tell people they’re pregnant at only 6-8 weeks. I get telling family and close friends. I will likely be telling a few close people if we get pregnant again if only because I’ll need the support. But, telling acquaintances on the playground? Not gonna ever be me.

Of course, I assume even people who know about miscarriages and other pregnancy loss still say congrats to those who tell about pregnancy early? I do, holding my tongue all the while that so much could go wrong in the next weeks or beyond. I say congrats because of course I wish them well not ill with their pregnancy experience. Because in that moment they’re happy, and why should I take that from them. Because if later they have to then share a loss, I’ll whole-hardheartedly say I’m sorry and share my stories. Because very likely they are in that number who do not really understand that at least 1/5 pregnancies (possibly 1/4) end in a miscarriage.

Congratulations was a big part of why we didn’t want to tell everyone about our pregnancy. I’m sure there are many acquaintances that still don’t know. I just couldn’t stand the dozens and dozens of happy congratulations on facebook when we knew there was a 50/50 chance our son had a lethal condition. I just couldn’t stand all that happy when we were possibly facing the exact opposite. So instead we told only family and closer friends. It limited the congrats, and we knew these were people who would support us if the worst happened.

Right now congrats are something I really don’t want if we get pregnant again. I know even if everything looks good I will be a wreak for that first half of pregnancy, possibly even the whole thing. So I don’t want congrats, not from friends, or family or even our very positive OB. I will thus have to likely preface every telling that we’re pregnant with “no congrats, please, I mean it.” And then repeat when people still say it, possibly more than once to those that just don’t get it.

Journaling

During my first 2 pregnancies I was much more into keeping journals. At the time of my first pregnancy, which ended in a miscarriage, I was keeping a journal about our adventures in Japan, where we lived at the time. So, I started one for my pregnancy too. I later got rid of that short journal because all those dashed hopes and my ignorance about pregnancy loss hurt too much.

I eventually started a journal for the pregnancy of my daughter and then her infancy. I did not really start it until after I was 13 week pregnancy. After we knew the pregnancy was healthy and we thought that we might actually have a successful pregnancy and become parents. Sometime in the business of parenthood after my daughter got mobile I just didn’t have time to keep up with the journaling.

I need to pick it back up. A quick daily note each day on things good, bad and otherwise may really help. While I know this blog in many ways works as a journal too, these posts are longer, more well thought out and written. I need someplace to just put down my visceral thoughts for the day, or the day before.

What the future holds or does not.

Will I ever hold another newborn of my own in my arms? Will I ever again feel bubbling movements turn into kicks? Will I ever again be able to feel and see a child grow inside me again?

It’s the hormones and emotions thinking all this. There is a chance, and likely a good one, that I will be able to get those again. I certainly hope there is. I hope I will get pregnant again, and I hope that it will not be another loss. Not that likelihoods quiet my doubts.

We do want to try again. We wanted our son we lost and his existence has convinced me I’d like a second child. I hate the months of waiting to try again and then possibly many months of trying ahead to get pregnant. We’re squeezed between getting too old to risk pregnancy and my husband’s next assignment being one that will have him away a lot. It will give us roughly a year to try and hope and accept what happens at the end.

If we do get pregnant again, those months of waiting and trying will increase the odds that I deliver and we become a family of 4 while my husband is away. I hope not, but I have no idea what next year may bring. Being on my own does not bother me as much as all my husband will miss out on if that happens. All those lasts I so want with a second child may be things my husband sees only in pictures and videos.

If we can have a second child, our children will not be especially close in age. I will never be that person with a toddler and a baby. My daughter will be at least 3, possibly 4. She’ll be just as awesome a big sister. My own brother is 8 years younger and I know that those years don’t lessen a sibling relationship, especially as you get older. And if anyone ever wonders why the age separation or worst makes a bad comment about it, they will get the truth about the lost child in between. The sibling my daughter does not currently know about and will never meet.

Possibly our hopes will not be answered, and our fate will be three pregnancies and 1 child, or worst 3 lost pregnancies. I have a usual trying 2 year old. She’s also brilliant, adorable, busy and strong. Right now the thought she may be our only living child breaks my heart. But I know she is all we need to be happy. She alone was enough and can be enough to complete our family.

If that happens and we get comments on “why only one,” or that “one is easier,” I”m sure my reply will not be nice. It’s my current anger speaking that, but said person will still likely get a reply about our lost son and fate not having another child in our cards. One would hope it will shame them had their comment been unkind. Besides it not being anyone’s business one never does know why a couple has only 1 child.

Life is a journey. It has been up to this point and it will continue to be. It completely sucks that what happened and all the pain and loss it bought has to be part of our journey. I have to have faith that the journey will continue to take us where it should, whatever it might bring.

Where my 2016 has gone so far: Lethal prenatal diagnosis and choices

Early this last December we found out that we were pregnant, which was a very much wanted thing to expand our family. Having had a previous miscarriage before our daughter we did not announce it, even to friends and close family. I really hate those first months of pregnancy where you feel nauseous and hungry and exhausted, anxious and worried and not really wanting to share what could become great news. I thought about posting here, but I have this thing that I’d like the first people to know about us being pregnant to be family, so I did not. I would have loved that subject to have been my first blog post about my pregnancy.

At 12 weeks when I was tired of trying to fit into normal clothes and worried someone would recognize I was wearing maternity clothing, we told family and then a few close local friends. We’d had our first OB appointment and the baby looked fine, I was healthy, it seemed the time to tell people.

Then, at 13 weeks I got a phone call on a screening test we’d done. Our OB had told us about a new blood based test to do early screening for chromosomal problems. The test was very accurate, especially for trisomy 21 Down Syndrome and was covered under our insurance, so a good test to take away worries. The results, however, came back showing a risk for trisomy 13. About all I knew about it from biology classes was that any autosomal trisomy except 21 was bad. A quick search and I found that essentially it was lethal, and that was likely the moment my heart broke.

But, this was only a screening test, one of which I can now tell you a great deal about from procedure to accuracy. Trisomy 13 also very rather rare, 1/10,00 to 1/16,000 live births. So, a false positive was rare, but so was the chance fetus actually had the problem. After our meeting with a genetic counselor a week later we found out it was likely a 50:50 chance the test was correct. So we hoped for the best. We also had to wait until 16 weeks to do an amniocentesis, which would give us a true diagnosis of our son.

Much waiting and reading up on trisomy 13 ensued. All we knew is there was a risk, so we mainly worried in silence, instead of facing tons of questions we had limited or no answers to. We did an early ultrasound at 16 weeks with the amniocentesis. The findings were incomplete because of the age and inconclusive, only a few “soft” markers of a chromosomal problem were found, although the heart and brain (which these children have major problems with) could not be determined healthy or not. Of course, me and my husband are both scientists and usually the simplest explanation of facts is the best, meaning the screening results and soft markers together leaned towards trisomy 13 or at least another problem with chromosome 13. But, it’s impossible to not be hopeful, to not wish for a healthy baby, to not hear that the few problems they had seen were mere coincidence.

At 18 weeks we got the final diagnosis of full trisomy 13. This did not come as a surprise, or shock. In many ways we’d been dealing mentally with getting this result for 5 weeks and just hoping we wouldn’t. I could likely write a cited review paper on trisomy 13 problems and survival. The diagnosis was not a prognosis, however, the short version of my research was that 80% are either miscarried or stillborn, another 10% will die in the first few days or weeks of life, a possible 5% to 10% make it to one year of age, but later die in childhood. They all have multiple medical problems, many severe, and severe developmental delays.

The decision to end the pregnancy was likely the hardest we’ve ever made. But faced with the facts, the statistics, the truth of how hard continuing the pregnancy would be knowing the possible outcome, it was the only choice that made sense in the end. So days shy of what would have been 20 weeks, we said goodbye to our son, who was very much wanted, dearly loved and will be truly missed.