What to expect when you’re expecting a preemie?

I’m at Brigham and Women’s Hospital in Boston, staying the night with my dear friend R. who is 28 weeks pregnant after IVF and now hospitalized for the duration of her pregnancy. She had to be admitted after it was determined that she was having contractions, was four centimeters dilated, and that her membranes were bulging. With medication, the contractions have been stopped. And now she’s trying to eke out as much time as possible before the baby is born.

Once R. got to the hospital, it was also discovered that she has protein in her urine (BP is normal) so they are watching her for preeclampsia. She has received steroids to develop her daughter’s lungs. She may or may not be leaking amniotic fluid (two tests came back positive, two negative). They are estimating her daughter currently weighs approximately 3 lbs.

R. is a very good friend of mine from college. She miraculously got pregnant with this little girl with her own eggs at age 44 – from her first IVF cycle (I am only a little envious of her incredible luck and amazing egg quality). I am going to be her daughter’s godmother once she is born – which her doctors say is likely to be in the next week or two.

Considering everything, R. is doing pretty well. Her family lives a few hours away and can only visit once a week, so she is alone right now. She’s scared, bored, and a little blue after spending Christmas waiting for the impending arrival of her daughter. But she is resilient. And she is grateful to have made it to a great hospital with a good NICU.

This is R’s first – and will be her only – biological child. She hasn’t yet taken any birthing classes, doesn’t know much about breastfeeding, and doesn’t know ANYTHING about preemie births and what to expect after the birth.

So my dear readers and ICLW’ers , this is where I turn to you for advice.

Since I am nulliparous, I’m not even sure what specific questions to ask. And of course I realize that every week will make a big difference in the outcome for her daughter and that there is a lot of variability between one baby and the next, even when babies are born in exactly the same week. And I also know that based on some of your experiences, 28 weeks sounds pretty far along! That said, moms of preemies, can you give any words of advice to R? What do you wish you had known? What got you through the toughest times? Any recommended reading on dealing with the special issues presented by a preemie?

Thanks in advance for your thoughts, advice, book and website recommendations, etc.

Mo

The consult...a look back, plus a plan

So you saw our questions in the last post. Now we have some answers. Thank you for all of your ideas about what to ask - both those left as comments and those privately emailed. Will and I appreciated all of your thoughts.

The RE's main point was that we shouldn't lose hope. He feels our prognosis is still very good. That we had bad luck with the chromosomal abnormality and miscarriage our first cycle ("That could have happened to anyone"). And that we can't read too much into the failure of cycle #2 because we only cultured three embryos (freezing six others at 2pn stage) and only transferred one.

He still thinks we can succeed with our own eggs (and even said he would not allow us to use a donor at this point if we wanted to, which we don't). Surprisingly, he felt the embryo quality throughout the three cycles has been fairly good. (Could have knocked me over with a feather with that statement. I was like "Really??!")

He continued to say that PGD would do more harm than good and that CGH is still too experimental (he said he thinks that the technology is still years away). He said they don't do micro-dose lupron except in the case of poor responders ("and you're not a poor responder," which was nice to hear). He seemed so-so about assisted hatching (but I think we'll ask for it anyway).

In terms of what's next, he said we should probably do endometrial co-culture and he's changing our protocol, removing lupron, upping the dosages of the meds a bit, and adding Ganrilex and menopur.

We are on the cancellation list to try to get in to do a co-culture biopsy in late January. I'm going to stay on progesterone through Friday to delay my cycle starting (who thought I would ever agree to extra PIO shots?!). If we're able to get the endometrial biopsy done in late Jan, we'll be on to cycle again in late Jan/early Feb.

So it looks like we're on to (gulp) IVF #4.

I can't believe we have to cycle again. But since we do, it feels so so much better to have a plan.

By the way, it is freakin' COLD in NYC today. Like Minnesota cold. Those of you who live in northern climes (Canadians, I am talking to you), I applaud you. I don't know how you do it.

Thank you again for all of your encouragments, stories, suggestions on blogs to read, and medical advice. I never realized how interactive blogging can be. Your thoughts and comments have been an enormous help.

We are past the solstice. There is a bit more light today than yesterday. Hoping for brighter, warmer days ahead.

Mo

Blue Christmas

Despite white snow blanketing New York City, it looks like we're in for a blue Christmas this year.

Today is 11dp3dt. Beta would have been today except that my clinic doesn't do betas over the weekend. HPT continues to be negative. It's over.

Will and I have been wrapping our minds around the likelihood that this cycle was a bust for the past few days, so the unbearable sadness is already starting to give way to a grudging acceptance. This IVF is tougher because it feels like three failures is significant. Like maybe we aren't going to get through to the other side and have a child. Which is excruciating.

It seems fitting that today is the winter solstice: longest night of the year, shortest day. Am hoping that metaphorically this means things will begin to improve. That this will be our lowest point in the journey toward a child.

We will see the RE tomorrow to get his thoughts on where to go from here.

These are the questions we are considering for him:

1. What happened? Where do you think this cycle went wrong?
2. How did embryo quality compare to previous two cycles?
3. A year ago after the first miscarriage, you said our prognosis was "fabulous." What is our prognosis now?
4. What have you learned from this cycle about how to go forward?
5. Would more aggressive stimulation help?
6. How about assisted hatching and fragment removal?
7. Or endometrial co-culture?
8. When can we cycle again?
9. Would varicocele surgery help? How long afterward would we have to wait?
   

Anything we aren't thinking of? Please chime in; we're both a little numb.

Mo

9dp3dt

It's nine days post our three day transfer and I feel like the window of hope is closing. I continue to feel no pregnancy symptoms. I continue to test negative.

Will and I are both starting to feel pretty hopeless, not just about this cycle but about our chances of having a biological child in general.

As you know, I've had a bad feeling about this cycle for a while, first during the stimulation phase and then at the transfer when I saw how fragmented the embryos were.

I have loved all of your encouragements (they have really, really helped, thank you), and especially Nancy's that she got a positive very late in the two week wait (Nancy, I continue to hold on to your story as my singular hope), but I also know my body. I've been pregnant three times and I know what it has felt like for me. I also learned from the whole Hodgkin's experience that it is vital I trust my instincts about my body. To trust that sometimes I just know that something is wrong.

So I'm still not downing margaritas or stopping the PIO (although I've broken out in hives again - neck, arms, chest, back. Like some extra cruel twist of fate. So much for switching from sesame to olive oil). I'm going through the motions, but really, I think it's over.

Will and I are both feeling so strongly this way that we decided to pre-emptively schedule the WTF meeting with the RE. I realize this sounds maybe a little ludicrous, but the idea of sitting with all of our feelings with no information until after the new year seemed unbearable. We figured we could always cancel the meeting if I turned out to be pregnant.

So I called. And the RE's assistant said that he didn't have an opening to meet with Will and me until Jan. 20th. HA HA HA HA!

I got off the phone and hit bottom emotionally. I know our RE is a busy guy. I know he has probably more patients than he should because he is so good at what he does. And I know that their office is closing for the holiday. And that he's probably taking some vacation. I do realize these things. But honestly, I felt a bit abandoned. And a wee bit resentful. Like it's expected for Will and me to turn our schedules upside down but when it comes time for a 10-minute talk so that Will and I can try to have a decent Christmas, he's too busy. Too busy FOR A MONTH.

Can we all say progesterone-induced insanity syndrome? I'm not usually a nutty, entitled person. Truly I'm not.

Anyway, I spoke to Will, and he offered to email the RE to see if there was any possibility of something earlier. No drama, no pushing, just simply asking. And twenty minutes later, the RE emailed back and now we're going in on Monday afternoon, probably about 2 hours after we get the "official" negative beta. Thank God I have an MD spouse on the same faculty as our RE. I am grateful but slightly saddened that if we weren't fortunately connected we'd be waiting a month. Anyone in our situation deserves to get a chance to discuss matters in a reasonable amount of time (say within a couple of weeks).

Maybe we'll get a miracle positive on the hpt in the next two days but we are starting to accept that we probably won't. And it is a huge consolation that we can talk with the RE and come up with a Plan B (or is it Plan D at this point?) so quickly.

Mo

How the two week wait stole my sanity and replaced it with tiny pizzas

I haven't been posting because I've been too busy trying to stay sane.

I'm struggling to focus on work, which has received scant attention of late. I've been able to pull it together for my patients, but when I'm alone...not much productive going on.

Instead, I'm spending lots of time trying not to think about the presence or absence of every strange twitch and bloat in my body. You know the symptoms everyone goes on and on about: sore breasts, uterine cramping, light spotting, fatigue, nausea, urinary frequency?

Well, I have some of those. Maybe. If I squint my eyes and focus my mind hard enough.

And now I'm trying to remember back to my last "successful" IVF (by the clinic fellow's standards, at least). What was I feeling? I remember thinking I was going to test positive. Didn't I think that? I had uterine cramping. Perhaps. Not really sure. Definitely. Ugh.

But the more I think about it, the more I realize that all I know is I am jacked up on progesterone. Or maybe I know that I am pregnant. Or maybe (more often) that I'm not. As I monitor my insides repeatedly, I think: abdominal cramp. Must be gas, embryos implanting, nervousness, embryos implanting, intestinal blockage. Im-PLAN-tation.

My breasts? I roll over at night and two massive globular entities wake me up. Soreness! Will marvels at them, at the widening, darkening aureolas now the size of tiny pizzas. The boobages may be large, Will, but back off! They are made of glass. Sign of pregnancy? Sign of progesterone. Were they more sore last time, when I was "successful"? I think so. Maybe not. Definitely. Are they more sore than yesterday? Yes. No. Yes. Ugh.

And I'm a little nauseated. It's the fast food I ate. It's the progesterone. I am PREGNANT. I have food poisoning. Wait, maybe it's passed.

Happy Holidays. Miserable holidays. White Christmas. Blue Christmas. Criminy.

Why did we decide to do this right before Christmas anyway?

It's 6dp3dt. Tested negative this morning.

I can obviously conclude that (1) this cycle is a failure. Or (2) this cycle is a success but it's really early. Or (3) who the hell knows, but at least the HCG is out of my system.

The only thing I know for sure is that suddenly, I have a hankering for pizza.

Mo

Pics from the petri dish: Don't judge an embryo by its cover

So without further ado, here are the three embryos that are hopefully now nuzzling in and taking firm root in my endometrium. One 8-cell, one 7-cell, and one 6-cell.

The bigger circles are the cells. And all that smaller debris is fragmentation, which unfortunately is not such a good thing prognostically (the embryo on the lower right looks especially ominous).

I'm really pulling for these guys to make it. Truly, I am. But I have to say that as the staff handed me the picture and started oohing and ahhing over it in the OR right before the transfer, I was crestfallen.

When my RE had phoned earlier that morning and said, "Three look better than the rest," this was not what I was imagining.

I had pictured each embryo would look like this:

which is to say, perfect and 8-celled with minimal fragmentation.

Will and I joked in the recovery room that if one of these embryos turns out to stick and become a baby, h/she sure won't be winning any beauty contests. Which of course would be just fine. We just want a healthy baby (and we're not exactly winning any contests either, believe me).

And while I am worried and somewhat disappointed, I am also thankful that we have embryos to transfer at all. That we have our health. That we have each other.

I met a woman as I was waiting for the transfer who only had one embryo to transfer and who three months ago lost her baby at 20 wks gestation due to a fatal heart defect. Ugh. And do you know what she said to me? "My husband and I are just grateful that we got to have the pregnancy and feel the baby move inside me. Even if I never get pregnant again, we will always have that to hold on to."

I almost cried. I'm not sure I could ever find the silver lining in such a situation. But I admire her incredibly for doing so.

I am a lesser being, I think, one sometimes filled with fruitless anxiety and angst. That said, I am trying desperately to stay in the moment and remember that things could, just maybe, turn out ok. Just because they haven't before doesn't mean that they won't this time.

The beta is Monday 12/22. What will be will be.

Mo

Reports from the petri dish: Transfer

We received word this morning that the gang of eight are not looking strong enough to make it to Day 5, so we are going to transfer in a couple of hours.

Our RE said that three of the embryos are looking better than the others and will be transferred.

We had a lot of back and forth about whether to put back 3 or 4, but ultimately, the RE felt (and convinced Will and I) that our chances of pregnancy wouldn't be improved that much (he said only by 3%) by a 4-embryo transfer, while we would have a much increased chance of triplets of quads (18% chance of triplets with four put back, 2.5% chance of quads).

We are trying to be optimistic. I have to admit I'm not feeling so great. Had wanted to make it to a Day 5 transfer, so this news that we need to transfer today really throws me.

Will and I are both desperately hoping that we don't end up again in Pregnancy In-Between Land as we have the last three pregnancies (pregnant but with non-viable embryos/fetuses).

Now that we're at the transfer stage, all the old emotions of loss are welling up. We're both trying to focus on the positive, but it is tough because this pregnancy thing has just never gone in a positive direction for us. It's strange to be feeling this way, I keep thinking I should be elated. Instead we are hopeful but chastened. Cautiously optimistic but terrified.

So in two hours, we will screw up our courage, focus on the chance that this could actually work out, and head back to the IVF suite at the hospital.

Mo

Reports from the petri dish: Fertilization

Of the 12 eggs that were retrieved, 10 were mature. And of those, 8 fertilized without ICSI (Way to go, Will's little swimmers!).

Usually at my clinic they require a minimum of 10 embryos to consider a 5-day transfer, but the nurse who called today said that my RE wants to try to push us to day 5. She said to keep both Wednesday and Friday afternoons free. The clinic will call Wednesday morning to let us know whether the transfer will be later that day or Friday.

Feeling much better today physically and optimistic about how things are looking. We shall see what Wednesday's news brings.

Thank you for all of your comments and thoughts.

Mo

Egg retrieval

A normally stressful event was made somewhat easier by having our RE make an unscheduled appearance to do Mo's procedure today. He retrieved 12 eggs! Mo has been fairly uncomfortable (but very relieved) and resting most of the day. She will update on the fertilization report as soon as we get word tomorrow. We are very, very pleased.

More news soon.

Will

Cycle day 13 update: Trigger day

Will just gave me the HCG trigger shot and we're set for an early retrieval on Sunday. I can't believe we're here already.

Things have brightened since my last cycle update. There are now 7 large follicles and several smaller ones visible on ultrasound, so we are cautiously optimistic that things will go well on Sunday.

My RE did our ultrasound Thursday and said he will try to come in and do my retrieval himself, even though he isn't on call. We are thrilled and touched. Our IVF center is quite large, known for its clinical excellence but not necessarily for being a hand-holding kind of place, so his willingness to come in on his day off is especially meaningful.

We will keep you posted. Thanks, as always, for your warm wishes and thoughts.

Fingers crossed and full speed ahead.

Mo

The fate of the frozen embryo

Today's New York Times yields yet another infertility article, this one on the difficulty former IVF patients face in deciding what to do with leftover frozen embryos.

According to the article, more and more couples are struggling to decide what to do with remaining frozen embryos when they want no more children. They are choosing to do everything from freezing the embryos indefinitely (at a not insignificant cost) to donating them to other couples (rarely) to donating them to research to saying prayers over the petri dish when the embryos are thawed and destroyed.

It's difficult to know what one would do in this situation. Given our struggle to produce a single offspring, I find it almost impossible to imagine that our problem could some day become the potential for too many children. And we have learned very well, through hard won and bitter experience, that an embryo (even several embryos) does NOT equal a baby. Not even when you actually get pregnant with said embryo.

At the same time, we do not see these embryos as just a piece of cultured tissue. They represent the potential for human life. And in that way, they are (the words are loaded but I don't know better ones) somewhat sacred.

Will and I personally entered the frozen embryo debate when we met with the RE to tell him we wanted to do another fresh cycle this time (while having six embryos frozen at the 2PN stage from our last attempt).

I believe the RE's exact words were: "What do you want, a library of embryos?"

Ouch.

I suddenly felt like the RE thought we were aiming to collect vast quantities of our genetic material to keep in jars in various rooms in our apartment. Just to gaze at.

His words surprised us, and definitely gave us pause. After reflecting, we explained our reasoning (to ourselves and to him) thusly: that we want multiple children if possible - gosh, a whole family of them if we could. That we worry I am headed into premature menopause because of my chemotherapy treatment almost a decade ago for lymphoma. That we can actually afford another IVF cycle right now because I have - just for this year - a very generous insurance policy that has a special arrangement with my IVF center. We reminded him that we are Irish Catholics (lapsed and mortally sinning Irish Catholics because we're doing IVF, but still.) That for us, a family with several children would not be a bad thing. We'll be grateful for one, mind you, but a whole passel of kids would be fine too.

But reading the Times story today made me realize for the first time another major factor underlying our decision to do a 3rd fresh IVF cycle: keeping six embryos on ice gives us a sense of continued hope. These embryos dull the full keening urgency we feel about starting a family. Their existence gives us a sense (falsely perhaps) that as long as we have them, we still have the potential to be biological parents.

This article also made it clear that it will be much more complicated than we ever imagined should we someday encounter circumstances that compel us to not use these embryos and instead have to decide their fate. What would we do then?

It's a decision I hope we never have to make.

Mo

Cycle day 10 update

Today's ultrasound was kind of a bummer. I had the fellow I am not so fond of again today and when she did the scan, it was clear that there was only ONE large follicle on my right ovary, and just a few decent sized ones on the left.

This is a significantly muted response compared to my previous two cycles (where 21 and 9 eggs were retrieved, respectively). Needless to say, since going in this morning, I've been trying not to get discouraged. The fellow did say that it's possible some of the smaller ones could grow enough to contain a mature egg ("That happens sometimes," she said, chipper and clueless, while I tried to suppress my urge to growl audibly at her).

Despite the substellar follicular development, my lower abdomen is extremely crampy - much more so than with the previous IVFs. Very curious. Based on the way my belly feels, something is going on in there. Maybe it's not follicles under construction, maybe my body is putting in a line of new condos or something.

In other news, Rocketman's ship landed safely last week in South Dakota and the results are in. Sperm chromatin was normal (which was a huge relief), motility was lowish, and morphology was abysmal. All in all not so different from previous testings. And nothing that's too major since we will be utilizing a petri dish (and perhaps ICSI).

So I know that none of the information gleaned today is terrible, but I left the IVF center feeling slightly glum and rather less hopeful about the cycle. Fortunately, my feeling one way or another should have just about zero impact on the outcome, as long as I can rally myself for my injections and make it to the retrieval on time.

I keep trying to remind myself that I don't need a legion, I just need a few good eggs.

But any words of wisdom from you guys would be most welcome.

Mo

Infertility math

Yesterday I read the cover story in the New York Times Magazine by Alex Kuczynski about her use of a gestational surrogate to become a mother after 11 IVFs and four miscarriages.

One of the things that hit home was her brief description of "the terrible, wishful math of infertility." I'd never thought of it that way exactly, but I immediately recognized myself. And I recognized my penchant for Infertility Math.

I have repeatedly calculated how old I will be when I give birth if I get pregnant on X attempt, which is a continuously moving target. I also calculate where I will be in my academic training and career…along the lines of "If I get pregnant now, I will be on my internship… applying to post-doctoral fellowships… interviewing for post-doctoral fellowships…on a post-doctoral fellowship (probably true if I get pregnant this cycle)…on the academic job market," etc.

One of my most grueling versions of Infertility Math is computing the age and developmental stage our baby would be at if we hadn't miscarried the first time. I only do this with pregnancy no. 1- by the second and third losses I'd learned to not calculate due dates that might come back to haunt me.

With that first pregnancy, Will's older sister was one month farther along and now has a child (truly, a lovely child) who is a continual reminder of the fact that our baby is not here. Try as I might to NOT do this, when I am at my sister-in-law's, holding her beautiful son, it is almost impossible to not start the dreaded calculations in my head, subtracting one month from her baby's age and imagining what our daughter would be doing and how our lives would be so very different if she had lived.

Then I catch myself, and I stop.

Until the next time.

Similarly, watching friend after friend get pregnant and deliver, and then some of these friends get pregnant - how is it possible? - a second time, has become yet another barometer of loss. A painful reminder that Will and I are somehow out of step with time.

The holidays engender a particularly treacherous form of Infertility Math. Just yesterday, Will and I bought our tree and were securing it in its stand in the living room. Before I could stop myself, I reflexively thought, "This will be our last Christmas without a child."

Which would be fine, except that I think this every year.

And we don't have a child.

And (breath hitches in throat) I don't know if we ever will.

Infertility carries us along on a continuous cycle of hope and loss…followed by more hope. Hope that I can soon be a mother, hope that Will and I can seal our union with an oh-so-beloved child, hope that we can put this chapter of grief and loss and longing behind us and move forward into the future.

And at the same time that hope carries us into dangerous territory - dangerous and terrible and wishful territory - a landscape of unmappable days, of the uncharted and unknowable future.

That's the rub of infertility. And the peril of Infertility Math.

Mo