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.

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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 emotional impact of premature ovarian failure

It’s almost time to break out the celebratory raw herring! Why? Because we are officially less than one week away from the arrival of our egg donor, Marie, in Holland. After so much intense preparation, I still can’t believe it’s finally actually happening. And while the odds are that it won’t work, I’m going to try to do my best to stay cautiously optimistic during this next IVF cycle.

With that said, the cycle hasn’t quite started yet, and I’m currently in a plane somewhere over Greenland, which always makes me emotional (the being-in-a-plane part, not Greenland…that would be weird). I understand this is actually a common phenomenon — perhaps because our tiny monkey brains still can’t process the modern miracle that is air travel. I already (somewhat embarrassingly) found myself nearly in tears while watching Blockers, a movie which is decidedly NOT a tear-jerker. So perhaps it’s a good time to talk about something that’s been on my mind a lot lately: What is the emotional impact of a premature ovarian failure diagnosis?

Maybe it’s hard to understand if it hasn’t happened to you, or if you don’t want kids, but finding out suddenly that you will likely never have biological children is pretty rough. However, I hadn’t considered that it might be even more serious than that until I was researching premature ovarian failure (POF) for a recent post exploring what causes it. One of the first places I looked, Wikipedia, had this to say about emotional health in those who had been diagnosed:

The most common words women use to describe how they felt in the 2 hours after being given the diagnosis of primary ovarian insufficiency are “devastated, “shocked,” and “confused.”[8] These are words that describe emotional trauma. The diagnosis is more than infertility and affects a woman’s physical and emotional well-being.[1] Patients face the acute shock of the diagnosis, associated stigma of infertility, grief from the death of dreams, anxiety and depression from the disruption of life plans, confusion around the cause, symptoms of estrogen deficiency, worry over the associated potential medical sequelae such as reduced bone density and cardiovascular risk, and the uncertain future that all of these factors create.

I knew most of this already from personal experience, of course, but I was struck by the phrase `emotional trauma’. As in, damage to the psyche that occurs as a result of a severely distressing event, and which can even lead to post traumatic stress disorder. I was further struck by the mention of the words “shocked” and “devastated”. Those words sounded familiar… I went back to the first post I had written, where I described receiving my diagnosis, and I used both of those words to describe it. It made sense actually — it was a trauma. Come to think of it, it was definitely in my top-five, and probably even top-three. For some reason, just knowing this has helped me to feel less like a victim, and more like a survivor.

How to get through it

I could talk more about the other physical and emotional consequences of the diagnosis listed in the Wikipedia article — and I’m sure I will at some point — but in the meantime, what else has helped me, personally, to get through it?

One thing that has helped me tremendously, of course, has been Marie’s offer to donate. Going through something like this can be an extremely isolating experience, especially with the constant bombardment of pregnancy announcements and baby picts that compose 90% of my social media. Knowing that someone is willing to go through all this for us is huge, and I’ll be forever grateful even if it doesn’t work.

I realize, of course, that not everyone has a big-hearted (& big-footed) Marie in their lives, so I also wanted to emphasize a few things that my fellow POF-sufferers can do for themselves:

  1. “Come out”. Sharing what you’re going through with friends — and maybe even more generally — can provide you with a crucial support system. If nothing else, it will stop relatives from asking you when you’re having children.
  2. Take care of yourself. The term `self-care’ is usually a bit touchy-feely for me, but it’s actually important in this case. Personally, I recently turned down a request to give 10 hours of lectures at a summer school (which I would also need to prepare from scratch). Another colleague made me feel guilty about this at first, which was particularly confusing because they know what I’m going through. But you know what? They can ask someone who ISN’T coping with an emotional trauma while also undergoing their 4th IVF cycle.
  3. Give yourself credit. Acknowledge that what you’re going through is hard, and make sure to give yourself proper credit. Couples split up and people quit their jobs over this stuff. If you’re at least making it through the day, you’re freaking killing it.