Friday, July 17, 2009

Miles' Story

Today seems the most appropriate day to post Miles' story, because it was two years ago today that I was in the hospital again, having labor induced again, because we'd just found out our baby boy had died.

Jeremiah had been stillborn on January 5, 2007. This was followed by lots of tests and weeks of waiting for the results. While we waited for results, both of Q's parents and my dad were all diagnosed with cancer.  So far, 2007 was the worst year ever.  Surely things would get better, right? My doctors assured us our chances for a successful next pregnancy were as good as anyone's, so despite our inevitable fear, we decided to try again. Once again, to our shock and great joy, we found out I was pregnant on the first try! Even better, we found out on Easter Sunday and the due date was a few weeks before Christmas! It seemed like such a beautiful blessing.

This pregnancy was not considered high-risk because our recent loss was supposedly random, even though I had pointed out to my doctor that all three of my pregnancies were complicated by cord/placenta issues and that didn't seem random to me. The perinatologist said to take baby aspirin, and I did so from the day I found out I was pregnant. Despite past problems, I was hopeful we'd come home with a live baby this time, even if we did have some complications. I'd never heard of anyone losing multiple babies to cord problems, and my doctors assured me they'd never seen it happen twice.

The first trimester was uneventful. I first heard his heartbeat on May 16, which was Jeremiah's due date. Bittersweet. Naturally, I was nervous about the possibility of another loss, but the first trimester passed without excessive anxiety partly because I knew that if I lost the baby at this early stage it would be less traumatic, at least in a physical sense.

Q and I had decided early on in this pregnancy not to tell family and friends about our good news, though we made a few exceptions for close friends who are geographically distant. The reason for this was to prevent the news from reaching our kids through comments like "You're going to have a new baby at your house!" or "You're going to be a big sister!". We didn't want to get the kids all excited about a new baby again until after we passed the midway point when we were to have an ultrasound at the perinatology clinic.

By 16 weeks, the stress was starting to build. The doctors at the OB clinic said I could come in anytime for a quick check if I got nervous between the regularly scheduled appointments. I did so at 16 weeks and baby's heart seemed to be beating normally. On Thursday, July 12, I started to get very worried and called the clinic the next day to see if I could come for a quick check, even though I had an appointment scheduled for the following Monday. They said they were too busy and I should just keep the Monday appointment. By Sunday, I was frantic and it didn't help when my two-year-old daughter kept saying very matter-or-factly and without a trace of fear, "There's a ghost over there, there's a ghost over there" as she pointed to the corner of my bedroom.

Q came along for my Monday appointment.  I was nervous, but hopeful that I was just being paranoid because of our last loss. Being nervous at this point would be perfectly normal, after all. When it came time to listen to the heartbeat with the Doppler, there was dead silence. As the doctor went to get an ultrasound machine, devastation set in. Why can't I keep my babies alive? How can I go on? Indeed it has been hard to go on since that day, but I try to live for my kids on those many days when I can't live for myself.

Unlike last time, things moved along at breathtaking speed. In less than 24 hours I went from hopeful but nervous, to going home from the hospital with empty arms again.

On our way to the hospital to have labor induced, we dropped the kids off at the home of some friends while my brother drove eight hours to come stay with us and help for several days. This time I was at a different hospital because the one I'd gone to last time was too full to take me right away, and I wanted it over with. In retrospect it may have been better to wait. The experience at the hospital this time was horrifying. Last time the nurses and doctor had been very empathetic because most of them had also lost babies. This time it was strictly business. The computer system was down, so I had to go over which tests I'd had done last time and which ones we should do this time. I couldn't believe I could function enough to do this after being dealt such a blow.

Next, labor was induced with Cytotec. This time it was shorter and far less painful, so I was not expecting what happened. I went to the bathroom alone at 3 a.m. and my water broke. It was dark brown with old blood and then Miles just fell out. He was in much worse condition than Jeremiah had been. The trauma of it did something horrible to my brain - I could actually feel it happening. I must have managed some sort of sound to summon Q, because he came and helped me while a nurse was called in.  After the nurse finally came, I made it back to the bed and started to throw up because I was so disturbed by what just happened.

As we looked closer at him it was clear that he was perfect before death had come to claim him. The cause of death was obvious this time - the cord was constricted to almost nothing near his belly and had a few other narrowed portions as well.

Since he was not as far along as Jeremiah he was a little smaller and weighed dramatically less, perhaps partly because he'd lost so much blood into the amniotic fluid. I suppose he died much more quickly than Jeremiah and I'm glad of that.

Early that morning, I was discharged from the hospital. This time we went home even more empty-handed ... no memory box, no mementos, nothing save a badly-done footprint on a piece of plain white paper. We had taken a few photos ourselves, but they are too difficult to look at.

We had hoped to bury Miles just as we had with Jeremiah. We called my mom to see if she could check with the cemetery about doing so. She was sewing foam clothes with her friends in preparation for the apocalypse.  In an annoyed tone she told us, "I hadn't planned on doing this today". How very rude of us to want to bury our child - we weren't planning on this today, either.

We found out from the cemetery that we could not put another preemie casket in the same grave. To have them together in one grave we had two choices: 1) buy a plot, exhume Jeremiah, and bury both babies in the new plot, or 2) cremate Miles and bury the urn in the grave with Jeremiah and my sister later on. We weighed the options and decided to go with the latter, even though we both didn't like the idea of cremation.

Cremation was just much more practical for many reasons. It was much cheaper. We definitely some financial strain going on, since we'd had to pay for two hospital bills and two mortuary bills in six months' time. Also there were logistical difficulties associated with getting the body and ourselves to another state within the time allowed by law.

Miles was born 9 days short of 20 weeks gestation, the point at which the baby is considered a person and the loss is termed a "stillbirth".  Paradoxically, he was not legally recognized as a human, but was considered "human remains". Therefore, we were subject to laws requiring disposition of the body within a certain time period. So we chose cremation and then buried the urn privately the next time we were in my home state. Certainly there was no peace or closure this time once the burial was done, but it is good to know our babies are buried together, as we wanted.

This time all the tests came back negative, including the repeat test for anti-cardiolipin antibodies and for rarer clotting disorders I wasn't tested for last time. The pathology report on the placenta didn't show any blood clots. Nevertheless, when we met with a perinatoligist a few weeks after the loss, she recommended that I use Lovenox daily if I got pregnant again. I would gladly try it if I ever get that opportunity, even though I can find no evidence that this would improve the odds at all.

The aftermath of this loss was pure hell. After the first loss, we'd gotten pregnant again quickly and that certainly helped. This time we'd lost not only the baby we'd so desperately wanted, but also all hope of ever having the family we'd wanted. Q was expected back to work sooner this time, and I was on my own with the kids sooner. In the month following the loss, Q was often out of town or out of contact because of his job. The first day I was on my own I had a panic attack. My whole world had changed permanently, but in a way that was completely intangible to everyone else.

Of course, the maternity clothes had to be packed away again - a tremendously depressing undertaking. But I was glad we didn't have to explain to the kids - again - that our baby had died. We had intended to tell them about the baby in one more week, after the 20 week ultrasound.

I am, of course, even more thankful for my living children, but it's been brutally hard to care for them as I want to. I am not the mother I want to be. I now have depression due to past events and anxiety due to a very uncertain future. Depression is at least familiar, but anxiety is new to me. The heart palpitations, which had gone away during this pregnancy, came back when it tragically ended. Also now I have what's called globus sensation (or globus pharyngeus) which feels like something is stuck in my throat - it's very annoying and caused by extreme stress. And there's also chest pain, shortness of breath, excessive sweating (lose weight without diet or exercise - ask me how!), nightmares, poor memory, and sleep problems. On top of that there's pelvic pain and a few panic attacks thrown in for good measure. I don't like people seeing me in such a state, of course, so it's also been extremely isolating. And yes, I have tried both counseling and drugs, but found neither to be helpful and in fact the drugs seemed to make things worse.

A baby would have been such a happy ending to a very hard year. 2007 brought us two dead sons and three cases of cancer in the family. It also absolutely ruined Christmas for me because Jeremiah died at Christmastime and Miles was due at Christmastime.

Two long years since Miles was born still, I miss him every day and wish desperately for an end to this whole ordeal.


Liz said...

oh mama, my heart breaks for you. i lost my Aquila 4 days after her due date, in the end of my labor. losing a baby is something you only understand when you have been there. i pray that your heart and arms will be filled.

Liz said...

and i am listening to your playlist - tori amos is and has always been one of my favorite artists. i had forgotten about the song spark. she wrote that after her own misscarriage-
"but she couldnt keep baby alive. doubting that there is a woman in there somewhere"
i know how you and she feel. knowing my own body killed my baby hurts like nothing else.

Mirne said...

I'm so sorry that you had all those "issues" because you wanted to bury your children together. I'm sorry your mum was so incredibly insensitive when you rang her to arrange the plot. I'm so sorry. Our oldest two children are buried together in the same plot. Our youngest child is cremated and we have his urn here at home. One day we hope to have a private burial where his urn is buried with his brother and sister. My husband and I hope to be buried with our children -- all in the same plot. But when we bought this plot, after our first child died, we checked to ensure that we would all be able to be in the same plot. I'm sorry you had all this trouble. Trouble that should never have happened. All because you care for your children.

Dana @ Lil Family Blog said...

Your stories were very moving and I'm so sorry for your losses.