She’s here!

She’s finally here! After making us wait almost six years, and then another two weeks just for good measure, our miracle baby finally arrived in mid-August at almost 42 weeks gestation. And while she’s currently home and doing well, it’s been a wild ride since then, to put it mildly.

I’ll get back to the actual birth itself later, but the events that followed her arrival are where the real drama occurred. And if you’ve ever witnessed a birth, you already know that’s saying something.

The beginning

We stayed in the hospital the first night after she was born, with no idea that anything was wrong. Miracle Baby (MB) slept through the night after some initial breastfeeding, but I had read that newborns often sleep for a long stretch right after birth. The nurse came to check on us every few hours, but she also didn’t seem concerned.

In the morning we discovered that MB had spit up (or more likely vomited, as we realized later) all over her bed, and her temperature was low. However, the nurse told us that this can happen if they swallow amniotic fluid with meconium in it, as MB likely had. We assumed this nausea was also the reason MB wasn’t interested in further nursing, and we were advised to go home and try some skin-to-skin time.

At home, we were met by our postnatal maternity nurse, which is an amazing after-birth benefit to living in the Netherlands. She was with us for several hours that first day, during which time she tried to help us determine why MB still wasn’t interested in nursing. I also tried to pump, but I wasn’t making much milk at that point, and we eventually resorted to finger feeding formula just to get something in her.

That first night at home was awful. My husband and I tried to wake MB to feed every three hours, but she was super sleepy and wouldn’t eat. She also kept vomiting (which, as I mentioned above, we mistook for spit-up). Nevertheless, it was starting to seem concerning. By the time the nurse had arrived back at our house the next morning, I was a crying mess.

After more failed attempts to get MB to eat, and a home visit from our midwife, we were sent to see a pediatrician at the local ER. At that point, MB had only peed once in >48 hours, was extremely lethargic, and her stomach was hard and bloated.

The hospital did some abdominal X-rays using an adult-size X-ray machine, which required my husband to stand behind it and hold MB straight out in front of him (#RealLifeCrossFit). I hobbled over to a chair, delirious from lack of sleep, and more worried at that point about the long-term effects of radiation on a 2-day old. The X-ray showed a large blockage in MB’s bowels, and they gave her an enema which released a mountain of poop. They also took some blood from her feet to run some blood tests. While we were waiting in our hospital room for the results, I pumped to stimulate my milk supply. At that point, I naively thought the enema was the answer and it would all be resolved soon.

Then shit got real

What we didn’t know is that the doctors had been consulting with some specialists at a nearby children’s hospital. They said that the X-rays couldn’t rule out that MB had a volvulus (i.e., twisted bowel) — which can be extremely serious — and the other hospital wanted to see us right away. Suddenly they were prepping MB for surgery, with an IV and nose tube, and taking my blood as a precaution in case she needed it. They strapped her tiny car seat to a gurney, which is probably one of the most heart-wrenching things I’ve ever witnessed, and we were rushed to the children’s hospital by ambulance.

Our two-day-old miracle baby strapped to a gurney

I was still in shock when we arrived at the children’s hospital, but I recall them doing some more abdominal X-rays (which still showed a large blockage) and taking yet more blood from MB’s tiny feet. We were then met by a team of doctors and surgeons, who did contrast imaging of her bowels. Thankfully, they were able to rule out a twisted bowel fairly quickly, but they told us they suspected a rare congenital bowel disease called Hirschsprung’s disease, which is also serious*. They started treating her immediately, and it was probably close to 3am by the time we were shown to our hospital room.

To make a very long story slightly shorter, we spent the next week in the pediatric surgery wing of the children’s hospital. MB responded well to the treatment for Hirschsprung’s disease, which consisted of irrigating her bowels twice a day. Still, it all seemed so wildly unfair. First it took us six years and another woman’s eggs just to get pregnant, and now the baby we fought so hard to have likely had a serious birth defect? It was a possibility I hadn’t even let myself consider while pregnant (surely we’d already had our share of bad luck?!), and we felt like we were stuck in a nightmare.

An unexpected result

After a few days, they started slowly decreasing MB’s IV and reintroducing feeding using the breastmilk I’d been religiously pumping. After five days, they began teaching us how to do her bowel irrigation procedure ourselves**. On the eighth day, she got her IV and nose tube out and we were sent home to await her biopsy results. At that point, we had accepted that she would need surgery before she was six months old and continuous monitoring until she was an adult, and we were ok with it. We realized that it could be much worse, and we were finally starting to find some happiness in the small moments. Some of our parents had flown out to assist, which also helped immensely.

IMG_7303
Re-introducing feeding with some pumped breastmilk at the hospital.

It came as a great surprise to all of us, then, when the doctor told us that her biopsy results came back negative. In other words, she did NOT have Hirschsprung’s disease! We could hardly believe our luck, and we began slowly decreasing the frequency of her bowel irrigations.

And that was the end of the drama?

Unfortunately, no.

Cutting back on the bowel irrigation didn’t go as smoothly as expected. MB stopped eating as much and was sleeping through the night, which was worrying in her case. At one point, her stomach was so distended that we had to do the bowel irrigation early. Then, at a follow-up appointment, the doctor informed us that after reviewing the biopsy, it was, in fact, positive. Our Miracle Baby did have Hirschsprung’s disease. We had come to terms with this at the hospital, but after spending the subsequent weeks thinking otherwise, receiving the diagnosis again was a fresh shock.

The good news

The good news is that things could be worse. According to WebMD, “Though the disease can be deadly, modern medicine is able to fix the problem with surgery, and children who have been treated can live normal, healthy lives.” The only way I’ve been keeping my sanity through all this is by repeating the last part of that sentence like a mantra.

We went back to the hospital last week to meet with the surgery and anesthesiology teams and make a plan. Thankfully, MB’s case is not so severe that she needs a stoma, so she will hopefully only need one surgery. The 3-hour operation involves removing the affected part of her large intestine, and it will occur when she’s around 4-5 months old. After that, she will hopefully be ‘cured’, and we can stop doing the twice-daily bowel flushes.

So there you have it — the full saga of MB’s eventful first weeks. If we thought things would be smooth sailing after her multi-year, multi-person conception effort, boy were we naive! But while this has all been extremely scary/stressful, we’re still *soooo* happy that our Miracle Baby is finally here. And we can’t wait until she’s grown so we can tell her what a huge pain she was not only before birth, but also after.

xx Allie

* Lest you wonder, her Hirschsprung’s diagnosis has nothing to do with MB’s donor egg conception.

** The bowel irrigation consists of sticking a 35cm tube up MB’s butt and injecting a huge syringe of salt water. The first few times you see it, it’s terrifying.

The genetics of my donor egg baby

Accepting that we had to use donor eggs during our IVF struggles was extremely difficult, to say the least. I’ve written previously about the grieving process that necessarily goes along with this ultimate admission of one’s infertility — how it feels like a part of you has died, and the post-traumatic stress that can accompany it. And even though I’m extremely grateful to modern science that there was still a way for me to get pregnant, fully accepting that you’re a genetic dead-end is a long, emotionally complex process which I’m still working my way through.

To give one example: when our egg donor, Marie, was here a year ago for her egg retrieval, she was explaining to her 5-year-old how she was helping put a baby in my belly. “One day you, too, will grow a baby in your belly!”, she explained to her daughter.

“Hang on a sec”, I wanted to interject — feeling compelled to add a caveat that it’s not necessarily a given so as not to set unrealistic expectations for the little girl. But then I realized that she was right — the odds are that Marie’s daughter will have no trouble conceiving a child naturally, should she eventually choose to. That then led me to an uncomfortable truth: I was jealous. Of a 5-year-old.

Why it still stings

Even though I’m now very happily 39(!) weeks pregnant thanks to one of Marie’s donated eggs, the lack of a genetic connection between me and our future child is something that I’m still coming to terms with. I think there are two main reasons for this.

The first reason has to do with my husband. We’ve been together over 15 years now, and he’s basically the best man I know. When you are in a (heterosexual) relationship like ours, it’s natural to dream of one day creating a family together — making a kid that is half you and half your partner. It’s like the ultimate expression of unity and an awesome science experiment at the same time. You never dream of creating a child with a third person, as lovely as that person may be.*

The second reason is a bit more selfish. I’m no Mozart or Giselle B, but most of the time I like to think that I’m sort of a cool person. This is also totally natural — everyday insecurities aside, I think most people are partial to their own genetics. It’s therefore become a running joke over the course of this pregnancy that whenever I’m feeling particularly pleased about some totally unimportant aspect of myself, like my exceedingly low blood pressure, or my yogic lung capacity, my husband and I will turn to each other with sorrowful eyes (mine serious, his teasing) and say “What a waste!”

Finding acceptance

Fully accepting the lack of a genetic connection with a donor egg baby is not something that happens overnight, and I think the most important thing is to allow yourself time. As I’ve experienced my own feelings about it evolve, I also wanted to share some thoughts that have helped me find acceptance.

The first and most obvious point is that genetics don’t make a family — love does. (This is also true for sperm donation, embryo donation, and adoption.) I’ve heard again and again from parents of non-traditional families that once you hold the baby in your arms, nothing else matters. You certainly won’t love the kid any less. From the very beginning of this journey — when we first made the leap to egg donation — this thought has comforted me.

Then there is the whole nature-vs-nurture point, where there is increasing evidence that nurture plays a huge role in many aspects of development. For egg donor babies carried in the prospective mother’s own uterus, the latest research in the exciting field of epigenetics even suggests that these environmental effects start in the womb. This means that although the baby’s basic genetic blueprint didn’t come from me, my diet, lifestyle habits, and even genes (via MicroRNAs) do influence which traits in the baby actually ‘turn on’.**

(Yes, I know I just got done saying that genes don’t matter, but this is still pretty cool.)

Another thing that has helped me is something I’ve mentioned before in the context of deciding to use donor eggs in the first place. In particular, I used to worry that I would get sad if our baby looked just like Marie (as beautiful as she is) because it would remind me that we weren’t actually related. However, my husband (smart man) made me realize that I needed to change my perspective. Instead of seeing the lack of a physical resemblance as a painful reminder of my infertility, I should instead see it as a reminder of the amazing gift we’ve been given. This slight change in perspective has helped me immensely.

Last but not least, finding the humor in the situation never fails to help. Just as I sometimes feel particularly pleased about some aspect of myself, there are other traits that I’m decidedly less enthusiastic about, like my terrible eyesight, or my somewhat unfortunate tendency to occasionally drool on myself in broad daylight. Whenever one of these unpleasant traits come up, my husband and I will turn to each other, half smiles on our faces, and say “Thank goodness those genes aren’t being passed on!”

xx

* And luckily for us, Marie is extremely lovely, both inside and out.

** So, unfortunately, that drooling gene may not be quite out of the picture yet.

Should I use a known or anonymous egg donor?

For those brave infertiles who have gone through the necessary grieving process and decided to make the leap to egg donation, choosing between known and anonymous donation is usually the next big decision that needs to be made. I’ll say up front that in our case, the decision was essentially made for us. This is because we were told that an anonymous egg bank wasn’t really a thing in the Netherlands, and we found out that while our Dutch insurance still covered us in Belgium, we weren’t allowed to use the egg bank that does exist there. This was crushing, to say the least.

There were a few reasons we had hoped to at least have the option of anonymous donation. For one thing, I was mildly concerned that if the kid turned out to look exactly like someone we knew, this would be a constant painful reminder of my infertility (as well as fuel for gossip among those who didn’t already know). There was also the concern that it would negatively affect our relationship with the donor. Would I be jealous of their genetic connection? Would they become overly attached to the child? What if they, or their family, became overly involved?

But the biggest reason we initially hoped to use an anonymous donor was that we didn’t think a known donor was even an option for us. Nobody we knew had offered to donate, and it seemed WAY too big a thing to ask (“How has the weather there been? Would you mind having surgery to give us your genes?”) Very few of our friends met the criteria set out by the clinic, and we doubted that those that did would be willing or able to put their lives on hold to fly to Europe, where we had recently relocated from the US.

Taking all of these factors into consideration, anonymous donation seemed like our best (and only) bet.

Will my egg donor baby look like me?

I was never very worried about finding a donor who looked like me, but this can be another benefit of anonymous donation for many women. In particular, some clinics will offer egg donor matching based on physical characteristics. If you aren’t lucky enough to have a sister or close relative who’s willing to donate, this can be the best way for your baby to have a chance of resembling you.

Just to play devil’s advocate for a minute, I actually had the opposite concern — that if the baby looked too much like me, people would be constantly commenting on the likeness. Wouldn’t comments like that be an unwelcome reminder that I have raisins for ovaries? Worse yet, since I’m such a stubborn advocate of infertility awareness, would I feel the need to launch into a diatribe at every innocent ‘She has your eyes’ remark? I could see that getting annoying (for both them and me) real quick.

Benefits of known donation

While my husband and I were initially planning on using an anonymous donor, we could also see the possible benefits of known donation. For one thing, the kid would never have to wonder where they came from, because the donor would already be in our lives (assuming they were happy to be identified). Even with an anonymous donor, the increasing popularity of DNA testing from companies like 23andMe or Ancestry.com means they may not be anonymous forever. What if the child wanted to reach out to learn more about their heritage, and they were rejected?

Another potential benefit of known donation is that you have more information about the donor. If you’re worried about the child inheriting specific qualities, knowing the donor may give you peace of mind. (Although I think any woman who donates eggs has a heart of gold, which is arguably the most important quality.)

Our experience with known donation

In the end, our hopes of using an anonymous donor were dashed when we learned that a known donor was our only option — at least if we wanted to have the procedure partially covered by our insurance. Fortunately, we were extremely lucky that my childhood friend, Marie, volunteered. Marie and I actually share quite a few characteristics (physical and otherwise), which is just icing on the cake. We were even luckier that we managed to work out the ridiculously difficult logistics that accompanied a donor traveling from overseas. (This was, in no small part, thanks to the help of our awesome Belgian egg donation nurse.)

There’s no doubt that if an anonymous egg bank had been available to us, I’d be singing the praises of anonymous donation. Since known donation was our only option without breaking the bank, I’m so grateful to be here singing Marie’s praises instead. When all was said and done, I think the emotional support we felt from Marie’s offer was probably the biggest advantage of having a known donor. And as my husband wisely pointed out, if our kid turns out looking exactly like a miniature Marie-clone, it will be a beautiful reminder that someone in our lives cared enough to literally give us a child.

xx

A small (17mm) victory

The last couple of weeks didn’t exactly go to plan. I’ve been prepping for a frozen embryo transfer (FET), where they will carefully defrost one of the extra embryos that resulted from our recent donor egg IVF cycle, then place it in my uterus with what is essentially a high-tech turkey baster. To prepare my body, I stopped taking my birth control pills and started taking estrogen (Progynova) in order to grow a nice thick endometrial lining. And to prepare my mind, I timed all this to occur while I was sipping piña coladas on a Greek island.

Unfortunately, I managed to come down with a nasty little case of laryngitis on the last ~5 days of our trip, which instead saw me pitifully sipping chamomile tea in bed. My clinic assured me that the cocktail of pain killers and antibiotics I was taking wouldn’t negatively impact the upcoming transfer, but I was still bummed that I wouldn’t be as healthy and rested as I wanted.

Lining check

Fast forward to my first day back from holiday, where I started my workday nice and early with a date with Wanda*. The point of this 12-day scan is to ensure that the ovaries are quiet and the uterine lining is sufficiently thick to allow for implantation.

The ideal lining is at least 7 or 8mm thick and displays a distinctive ‘triple-line’ structure that indicates good ‘estrogenization’ and healthy growth of the endometrium. I’ve never had any trouble in this area, but growing a sufficiently thick lining is one of the hardest parts for many women facing infertility.

After confirming my ovaries were dormant (I could have told her that!), the doc headed over to my uterus (it’s like Mrs. Frizzle and the Magic School Bus over here). Immediately her eyes bulged, and she pointed at the screen like ‘Get a load of this’. She asked me to repeat what medication I was taking, and when I answered Progynova, 2mg, three times a day, she said “Well it’s working.”

Since I don’t have nearly as much experience as she does staring at fuzzy ultrasound screens, I still didn’t really know what she was talking about…until I saw her measure the endometrium thickness: 16.93mm.

My 17mm triple-lined endometrium in all its glory.

Since I posted this image on Thursday, Instagram has been losing its collective mind. And with good reason — studies show that pregnancy rates correlate with lining thickness. Many women struggle to grow a lining even half this thick, which probably explains the plethora of heart-eye emojis in the photo’s comments. From all the oohing and aahing, you’d think I posted a photo of a puppy in a mailbox rather than an ultrasound of my uterine tissue.

How did I grow a 17mm lining?

In addition to the heaps of admiration, one commenter asked the question everyone really wanted answered: “Holy hell. 16.93???? How?!”

At first I didn’t think anything of it. I’ve always grown a fairly thick lining (~11-12mm), so I thought maybe it was just a natural gift (& the world’s lamest superpower?) Still, it’s almost 50% thicker than usual, which seems like quite a large deviation. Maybe it’s a weird side effect of the antibiotics I’ve been on? Or maybe that wondrous week I spent spread-eagle in the sun somehow did the trick?

Then I had a realization so obvious that I’m embarrassed it took me as long as it did: I was taking an iron supplement this cycle. I didn’t think of it earlier because I was taking it for a totally unrelated reason. Namely, I’ve been feeling particularly tired lately, and a friend mentioned that low iron levels could be the culprit. I happened to have some sitting around in the medicine cabinet, so I popped it in my pill case without a second thought. I only took it for about 10 days due to unpleasant side effects**, so by the time my ultrasound rolled around, it was totally off my radar.

I can’t be sure it was the iron, of course. There are too many other variables, and I don’t have a control group. But it makes a lot of sense, since iron plays a vital role in the creation of healthy red blood cells. So if you’re looking for ways to thicken your uterine lining, you might consider some combination of taking a Greek holiday, developing severe laryngitis, and talking to your doctor about an iron supplement.

xx

* Wanda is the trans-vaginal ultrasound wand used to check one’s uterus and ovaries. We’ve been having a torrid affair for over a year (don’t breath a word to my husband).

** This is my polite way of saying severe abdominal bloating and constipation. At one point, there had to be at least five Greek salads in there.

Frozen embryo update!

In the words of children’s author Judith Viorst, this past Wednesday (the day of our embryo transfer) was a terrible, horrible, no good, very bad day. After things seemed to be going so ridiculously well in this IVF cycle — our egg donor Marie produced 15 mature eggs, 100% of which then fertilized and were looking strong in the days that followed — we learned on Wednesday that only a single embryo had developed into a viable day-5 blastocyte. Two others had also become blastocytes, but they were too poor-quality to be frozen. When I tried to ask if there were any other embryos still in-the-running, the doctor was — excuse my language — a ginormous dick. He sounded so pessimistic — admitting it was a below-average response, and even hiding his chart so I’d stop asking questions(!) — and I left feeling completely despondent.

I sobbed the entire 2+ hour drive home from Belgium. Once back at our house, I transitioned onto the couch for further sobbing. I had made a deal with my husband earlier in the day that he had to do whatever I said all day so that I’d feel happy and relaxed after the embryo transfer. Before the bad news, this had come in the form of sassy decries (e.g., “I decry that you escort me around on your arm all day”; “I decry that you stop sending me stupid Reddit videos”). After the news, and back at home, I decried that he leave me be so I could mourn the unfairness of the Universe in solitude.

A sudden turn of events

After such a miserable day, you can image my surprise when I received an email the next morning saying that 5 embryos had been successfully frozen. FIVE! Not trusting my Dutch reading skills, I copy-and-pasted the email into google translate just to be sure. It still said the same thing…FIVE EMBRYOS COULD BE FROZEN!!!

IVF is such an insane emotional roller coaster.

So why the sudden turn of events? Well, my husband and I are still complete newbies when it comes to blastocyte development, since we never made it this far with my own eggs (or lack thereof). Apparently, in addition to freezing any good-quality blastocytes on day 5, they let the remaining embryos continue to develop overnight, allowing the stragglers to catch up. These slower-growing day-6 embryos may still turn into blastocytes which can result in a healthy pregnancy, and they will freeze any good-quality ones as well. I had no idea that there could be such a big change from day 5 to day 6, and it would have been nice if the dick — Sorry, I meant doctor — told us that there was still some hope.

What does this news mean?

Obviously we hope that the embryo I currently have on-board will decide to stay put. However, based on its quality, it only has a 17% chance of resulting in a live birth (though a ~30% chance of pregnancy…fun implications there). If it decides not to stick around, then we can try what’s called a ‘frozen embryo transfer’ (FET) without having to go through the whole egg retrieval process again. Most of the embryos should theoretically survive the thaw, so that would hopefully give us another few chances.

In the meantime, I’m oscillating between cautious optimism and (more statistically realistic) extreme pessimism with the current embryo on board. It’s far more likely that it won’t stick….but there’s still a non-zero chance that it will. I seem to be growing (unwisely) more optimistic each day, which is probably the emotional equivalent of that slow upward climb on a roller coaster before the huge stomach-lurching drop. In that sense, the (potentially poorly translated?) advice that our favorite Belgian egg donation nurse gave me might actually make more sense: “Keep your head on.”

Egg donor’s retrieval scheduled

We’re currently in the thick of our fourth IVF cycle, and our first attempt using donor eggs. Yesterday morning our egg donor, Marie, and I made the ~8 min drive from the hotel where we’ve been staying in Ghent (Belgium) to the hospital there for her 3rd check-up. Marie is now a seasoned vet at the transvaginal ultrasounds that are needed to count and measure the follicles growing in her ovaries. So let’s get down to it.

This latest ultrasound showed she’s still growing around 17 follicles in total — same as the last check. The follicles are growing at different rates, which is totally normal, but it means that only some of them are expected to be the right size to contain a mature egg. In particular, in order to maximize the total number of eggs retrieved, sometimes the clinic decides to sacrifice the largest follicle in order to wait for a larger number of smaller ones to catch up. Even then, there are usually also some follicles that are still too small to contain a viable egg.

Marie now has one follicle that is probably too large (25 mm), but 9 that are the right size (18-22mm). In addition, she has around 5 more slightly smaller ones (15-17mm), some of which may (hopefully) be large enough by the retrieval. Then there are two that are definitely too small (12-13mm). These results are shown in the (embarrassingly poor-quality) screenshot below, which Marie and I shamelessly snapped from the ultrasound technician’s computer. If all of those follicles yield an egg (which is not guaranteed), then we will hopefully retrieve 9-15 eggs in total…a great result, and way more than they retrieved from me in all three of my previous IVF cycles combined(!)

Poor-quality screenshot showing size of follicles in millimeters (y-axis) versus date of exam (x-axis). Marie’s ultrasound yesterday morning (far right column) showed 9 follicles in the correct range (18-22mm), one at 25mm (probably too large), and 5 more (15-17mm) that may also be large enough to contain a mature egg by the egg retrieval. (The 12-13mm guys are sadly too small.)

When will the retrieval be?

After her ultrasound, Marie had a blood test to check her hormone levels. We got a call yesterday afternoon that the results came back in-range, which means that we are good to move on to the next step. So last night at exactly 10:30pm, we gave Marie her final hormone injection: a trigger shot in the stomach (#hardcore). This final shot helps the eggs mature so that they’ll be ready exactly 36 hours later for the egg retrieval, scheduled for tomorrow morning.

Does 9-15 follicles mean 9-15 embryos?

We’re super happy that Marie is responding so well to the medication and that we’ve made it this far. But before everyone gets overly excited, I just want to clarify that 9-15 follicles does NOT mean 9-15 embryos. If it did, our chance of a live birth from this cycle would probably be way more than the predicted ~25%.

To start with, we can’t be sure that all of the follicles (even the big ones) will yield eggs…

Then, of the eggs retrieved, only some of them will be mature…

Of the mature eggs, only some (maybe 70% on average) will fertilize…

Of the fertilized eggs, only some will divide normally into embryos…

And finally, only some of those embryos will make it all the way until the fifth day, when we will hopefully have at least one that can be transferred to me (and stick).

In other words, even with 17 follicles, it’s perfectly possible that we could end up with only one or two 5-day embryos. Of course, that would still be way further than we got with our last 5-day transfer (which was cancelled due to having 0 embryos)! So cross your fingers (or hold your thumbs) that we make it that far. And keep Marie in your thoughts tomorrow for the egg retrieval, which she was less-than-thrilled to learn is referred to in Dutch as the ‘puncture’.