Two Days of Torture

One of the lessons of parenting that has come up frequently for me is to roll with the punches—don’t get your heart set on things working out a certain way. And yet, apparently I still haven’t learned the lesson, because I really was hoping Elliot’s birth story would have turned out differently.

I never did go into labor spontaneously. So, at my midwife appointment on Friday, August 17, we were out of options. The midwife informed me that they wanted to get the baby out by 42 weeks—by Monday, August 20. She was concerned that I wanted to do a VBAC but they would have to induce; apparently this is not a very safe or successful combination. She had to speak to the doctors who were on call all weekend to make sure they were okay with trying induction. She warned me that they may not be, but she would call to let me know when to be at the hospital and what we were going to do, noting that induction would be via pitocin drip and balloon dilation.

Later that day, I got a call letting me know that they would induce at 6 am the following morning. “Oh good,” I thought, “I can get some sleep tonight!” Little did I know… I was so stressed out about the impending procedure that I only slept from 11:30 pm to 2:30 am. (Gracie was also stressed, apparently—she woke up at 4 am and could not go back to sleep. She wailed and sobbed. She wouldn’t tell me what she was worried about; I think she was afraid that I would have to have a c-section. She is afraid of surgery. Perhaps this is because she has lost parts of her fingers in every surgery she’s undergone.)

When the time came, my sister and husband and I drove to the hospital for the induction. Although we got there roughly on time, it took quite a while to get started. Even though I’ve always been told that I have great veins, the nurse could not get an IV going, and had to call the vascular team to start the drip. I was also told that I would have to be on the monitors the entire time I was there, and that I could not take a bath or utilize some of the other features of the birthing room. Bad news on top of bad news.

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I hated everything about this picture at the time I took it.

Eventually, the midwife came in to discuss the plan. They would start the pitocin drip to ripen my cervix, and if it worked, they would then insert the balloon catheter to continue cervical ripening. I asked why they couldn’t use any other methods to ripen the cervix. Apparently, everything else can cause contractions to come too fast and often, which increases the risk of uterine rupture. These two torture devices were my only options.

When the pitocin drip started, it took quite a while for the contractions to come. But after a few hours, they were starting to get more intense and more frequent. It seemed that there was a glimmer of hope at last—it seemed like labor was finally starting. That hope was short-lived, though; the contractions suddenly stopped and progress stalled. At that point, exhaustion overtook me—the three hours of sleep from the night before were not enough for me to continue trying to labor, and I could not do anything but lay in bed. The night midwife decided to stop pitocin and insert the balloon. She made some comment about my reluctance to use the balloon; I don’t even remember what I said or did that made her think I was unwilling, but to me it was more that I was so exhausted I couldn’t think or make any decisions on my own. She went ahead with her plan, and soon there was a large balloon catheter in my cervix.

The catheter caused tremendous cramping, as expected, and throughout the night I woke up with painful cramptractions. But it worked. The next day, it was ready to come out, and my cervix was dilated to 5 cm. At that point, labor legitimately started. The contractions were frequent and intense, and by about noon I was dilated to 7.5 cm. I was hopeful that the baby would be born by that afternoon.

The contractions continued to intensify and were coming closer and closer together and lasting longer and longer. Although I had wanted to try a drug-free birth, it soon became clear that the pain was too intense to manage without any relief. The nurse offered me nitrous oxide to “take the edge off” during the contractions, which I accepted at that point. The nitrous was frustrating to me; the face mask made it hard to properly breathe through the contractions, and during the rest period I could barely keep my eyes open. It did not seem to do much for the pain, but it definitely impaired my faculties. I would not recommend it to other mothers.

I don’t know how much time passed, but eventually the contractions were so strong and so close together that I felt like maybe I should try to push. THAT was excruciatingly painful. It felt like the baby was stuck—like he could not get through my cervix. When the midwife came in, she said I was at 9.5 cm, and she could try to massage the last little bit of cervix out of the way with the next contraction. I was hysterical and cried for her not to do it—I knew how much it would hurt. At that point, I asked for an epidural. The pain was just too intense to manage. I can remember various visual images of pain that passed across my eyes during those severely intense contractions. It was getting more and more painful, but the baby wasn’t making his way out yet. It was awful.

The nurse took away the nitrous when I asked for the epidural. I remember crying in desperation, but also thinking that it hadn’t really helped anyway. I breathed through the next several contractions, holding on to Chad and silently praying for relief. After several more intensely painful contractions, the anesthesiologist appeared. He was my savior at that point.

The moment the epidural kicked in, the baby became distressed. His heart rate dropped dangerously low, and all of a sudden there were nurses and doctors everywhere. It occurred to me after a bit that they were prepping me for surgery. They gave me several medications to stop the contractions and to help the baby, they washed my stomach with their special soap, and they inserted a bladder catheter. They rolled me on one side, then the other, trying to stabilize the baby. Finally, his heart rate recovered, and everyone left the room except the night nurse (it was evening by this time; time had passed without my conscious awareness while I labored). They told me they would be back in an hour or so to check on whether the contractions were coming back.

I stared at the baby’s heart rate monitor, terrified that he was not okay. After all that, the worst possible outcome would be to lose the baby, which is what I was afraid of all along. With every dip in his heart rate, I asked the nurse whether he was okay. The nurse assured me that he was fine, but I couldn’t believe it—I couldn’t take comfort in it after all we had been through. And when my contractions started coming back, his heart rate would drop with each one. The nurse was unconcerned, but I was worried.

Finally, after what seemed like hours, my midwife came back in. She pulled up a chair and looked me in the eyes. She said, “Suz, I think we need to get this baby out.” I quickly agreed; it was too scary to watch him suffer each time I contracted. I was so worried about him, and only wanted to see a healthy baby. She started gathering the team for a c-section.

It was at this point that I felt most hopeless, felt the most despair. I had just gone through two days of intense contractions and painful medical interventions, and for nothing—we were going to end up in a surgical suite anyway. Why had I bothered trying? Why had I spent so much time and energy working to bring the baby into the world, when he would just have to be cut out anyway? It was awful; this is probably the part of the birth story that I will always have the hardest time with. At one point, my midwife came in and saw me crying. She tried to reassure me that I had done what I thought was best for my baby, and that I would have always wondered if I had not done it this way, but that was small consolation.

I felt utter despair as they wheeled me into the operating room. I had asked for two “consolation prizes” for the c-section—I wanted them to tie my tubes as long as they were in there, and I asked for a clear drape. Neither would happen; the (Catholic) hospital would not allow tube-tying for birth control reasons, and when I mentioned that I have an aunt who died of ovarian cancer (this is one of the reasons they’ll do the tube-tying), the doctor said he was worried that I’d already lost a lot of blood and he didn’t feel comfortable doing the surgery. He also said that they do not have clear drapes, so I would have to have the big blue sheet covering my view of Elliot’s birth. At that point, it seemed that nothing had gone right anyway, so I didn’t argue. I did not have the strength or presence of mind to advocate for myself, anyway.

If I’d had enough presence of mind, I probably would have objected to some of the medications they gave me before the surgery. I tend to throw up every time I get anesthetic or pain medicine, and they gave me several different types of each. But that wouldn’t occur to me until the next day. But I digress.

I could feel the surgeon make the incision—it didn’t hurt, but I could feel the pressure. I could feel them maneuvering Elliot around so that he would come out head-first; apparently, he was not quite in the right position. And I could definitely feel them pull him out. I realized I could see his reflection in the overhead lights, and watched as they rubbed and rubbed on his chest, trying to evoke a cry. I desperately intoned, “Is he okay? Is he okay?” to which everyone assured me he was, but I could not feel peace until he cried. It seemed like an eternity.

Soon, though, came the sweetest sound—his little sweet newborn cry. They whisked him to the warming bed to clean him off and do all the things they do. I watched him struggle and cry on the bed as the nurses gathered around. Pretty soon, one of them shouted out his weight—”Nine pounds, two ounces”—Chad’s exact guess! No wonder he couldn’t get through my cervix. He was just too big. He really WAS getting stuck!

Chad told me later that when he had come out, the cord was wrapped around his neck and all across his body. Elliot’s cord was huge, which Chad heard one nurse say is a sign that the mother “really took care of the baby”—score one for me, I guess. But that huge cord was getting compressed every time I contracted, which explained why his heart rate was dropping. Chances are, he wouldn’t have been able to be born naturally anyway; the stress of moving through the birth canal would have maybe stopped his heart for too long. At least, that’s what I’m telling myself… I need to hang onto something to understand why it didn’t work out the way I wanted, why we ended up in a surgical suite after two days of torture.

Elliot was born at 10:19 p.m. on August 19, only a little over an hour before the end of the 42nd week. He was and is absolutely perfect. He is the sweetest baby—he really only cries when he’s hungry, and it’s a cute little whuffling cry, not a full-on scream. We are all in love.

Ultimately, all’s well that ends well. Even though we went through two horrible days to get him here, Elliot is a beautiful healthy baby. That two days of torture was probably worth it, despite nothing going according to plan. (But it all went how I imagined it would when I was told about the induction method, ironically… no wonder I didn’t want to do it that way.)

Elliot completes our family, so we will never have to go through that sort of ordeal again. He is perfect, even if his birth story is not.

Welcome to the world, Little Mr. Man.

ElliotHoyt

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The Waiting Game

In my last post, I discussed how my midwives were pushing me to induce the baby right at 40 weeks, and my ambivalence about that. At my next midwife appointment that Friday, my favorite midwife casually informed me that they would not be able to use the same induction methods they used with Jackson; the medicine they used increases the risk of uterine rupture in people who have had previous c-sections, so it is off the table. In order to induce this time, the midwife mentioned she would plan to use a balloon catheter to manually dilate the cervix and a Pitocin drip overnight to induce contractions.

Both the balloon and the Pitocin sound absolutely barbaric to me. I had visions of a very painful and unsuccessful induction that would ultimately end up in a c-section anyway. After several tearful days of soul-searching and reading medical journal articles for the medical reasoning behind induction, I decided to cancel it. The medical journals all said that induction is recommended for mothers of advanced age no later than week 39; we had already passed that milestone, so there was no good medical reason not to continue to wait. They also said that the risk of stillbirth increases after week 39 – but it increases from 1 in 1000 births to 2 in 1000 births, which is not really a huge percentage increase. And for babies and mothers who are healthy, like me and Elliot, there is very little risk of stillbirth.

On the morning of my due date, August 6, I called the midwives and told them I would be canceling the induction. They agreed, but wanted me to come in for a non-stress test and to talk to a midwife in person. I was happy to do so, and ready to stand my ground on the refusal. I considered it the first parenting decision I was making for my unborn child. Having Gracie has taught me a lot about advocating for my children’s rights, and I was determined to use those advocacy skills to fight for this child, too.

Thankfully, my favorite midwife was the one we saw, and she was very supportive of my decision to cancel the induction. She said at one point that she may think I made the right decision; she was also worried about the potential for a failed induction. She advised me to make an appointment for August 13, one week after the due date, during which I would have an ultrasound to check fluid levels and the placenta and another non-stress test.

Last week, we waited anxiously, every day wondering whether it would be THE day. I went through cycles of elation and despondency – some days, I would be sure I was about to start laboring, then nothing would happen, and then the next day I would be despondent, knowing that another day had passed and I was inching closer to having to advocate for my unborn child with a midwife I’d never met. As Monday approached, I grew more and more stressed out, worrying about whether the new midwife would be supportive.

Thankfully, she was. The ultrasound and non-stress test were fine; the baby and I are still perfectly healthy. She asked that I return in three or four days to re-check the baby, but was ultimately completely kind and supportive. In fact, she was so peaceful and kind that I have a new second-favorite midwife.

On Monday, I again felt very close to labor. I was having tons of Braxton-Hicks contractions and a great deal of cramping. When I woke up Tuesday morning, I thought for sure it was starting, as I had a few painful contractions right in a row. But then, everything stopped… it wasn’t labor.

Yesterday was a bad day. Again, I was despondent, wondering if the baby would EVER be born. It doesn’t help that everyone is asking me when he’s going to be born, and making comments about how long the wait has been. Believe me, it’s been longer for me than anyone else. It’s a little dagger in my heart each time someone makes a comment about continuing to wait for the baby. Yesterday was full of tears and heartache.

Today is a better day again. Although I don’t feel any sign of imminent labor, I’ve always thought that he would be born today, since the kids start school tomorrow and it’s the worst possible time for me to have a baby. I’m trying not to get my hopes up that he will actually be born, but it’s impossible to forget that today could be the day.

At this point, it feels like I won’t go into labor naturally at all. If we make it to next Monday, there will be no other option but to induce and hope it works, since very few midwives and OB-GYNs will allow anyone to go past 42 weeks. And I accept that, in theory. I will know that I tried to give him the best possible chance at a healthy existence. I still don’t want an induction or a c-section, but the hard truth is that it is completely beyond my control.

Elliot has four more days to be born on his own terms. Hopefully, he will decide it’s time within the next four days. But ultimately, we’ll meet this little guy by early next week no matter what.

 

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40 at 40

Apparently, age 40 is practically geriatric in the baby delivery world. Even though I feel healthy and spry and finally have a bit of a grasp of this whole parenting thing, I’m apparently much too old to have a baby, and far too old to carry the baby past term.

But let me back up.

When I first had Jackson, I was 30. It was exhausting; I will never forget the sleepless nights. In fact, I was so tired that I slept like the dead during the 2 hour stretch where he wasn’t nursing or wanting to nurse each night at several intervals.

There was a house fire on our block one night when Jackson was about 3 months old. The flames shot up so much that we could see them from our bedroom window, even though the house on fire was a few houses down the street. Fire trucks wailed down our street, and the smoke was thick. I slept through all that, only awakening when Jackson cried. In my groggy, sleep-deprived haze, I had no idea why our room had an orange glow or was filled with smoke until my husband also woke up and told me what was going on.

I remember thinking at that time that I knew why people had babies in their 20s. When I was in my 20s, I had less trouble staying up all night (partying and drinking, of course, but who’s counting?). By the ripe old age of 30, those days were long gone and I felt far too old to keep up with the rigors of a newborn.

The sleep deprivation is the part of parenting a newborn that scares me the most this time around, at the practically ancient age of 40. Will Elliot be a good sleeper like Grace? Or will he wake up every 2 to 3 hours all night long like Jackson? Or will he present some different, as-yet unknown scenario? We will find out in a few days; Elliot is scheduled to be induced next Tuesday night, if he is not already born by then.

Other than a healthy baby, one of the things I wanted most from this pregnancy was to go into labor naturally, since I never have before. But from the very beginning, my midwife has told me about a new-ish development in OB-GYN care called “40 at 40.” It means that when the mother is 40 years old, she should not be allowed to go past 40 weeks’ gestation. We have talked a lot about it, and she assured me that we could go a little past, but because I also want a healthy baby I’m nervous about pushing it too far. After a great deal of consideration, I decided that if our favorite midwife was working, I could schedule the induction for her shift so that she would be the one to deliver the baby. (She also delivered Jackson and Grace, so it would be really nice to have her there.) It turns out that she’s working overnight on Tuesday, August 7, and all day on Wednesday, August 8. So, it made sense to schedule the induction for late at night on August 7—we will go into the hospital at 11 pm to be induced, and if everything goes as well as it did with Jackson, we should have a baby by Wednesday afternoon.

You would think that after all we’ve been through with Grace I would be used to having things not go my way. And, for the most part, I am. But this time seemed so different—it seemed like all my dreams were coming true. It’s hard to give up any part of what I had hoped would be the perfect labor and delivery. And truthfully, there is still a chance that it could work out perfectly—a very slim chance, but a chance nonetheless. I don’t have a lot of hope for that, though. I am feeling despondent about having to be at the hospital an extra day while the baby is induced.

It’s for a good cause; we definitely want to give Elliot the best chance at being a healthy, happy baby that we can. And he will for sure have time to get all the IV antibiotics if we are induced, so that’s good too.

But still… I’m keeping my fingers crossed that he’ll make an early appearance. C’mon, little man! Do it for Mom. 😉

 

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Two Week Warning

Today marks the beginning of my 38th week of pregnancy – only two more weeks to go until d-day, give or take.

For those of you who were wondering, the 36-week appointment went really well. Baby was head-down, face-back, and all his measurements were perfect. He weighed approximately 6 pounds, 8 ounces at that appointment, meaning he’s on track to be an 8 pounder when he’s born.

We did have a bit of bad news at the next appointment. My group B strep (GBS) test was positive, which means there is an increased risk of the baby having serious problems like meningitis or pneumonia. Yikes!!

I hadn’t even considered the possibility that the GBS test would be positive. It was negative with both Jackson and Gracie, and I didn’t really think anything of it this time. It turns out that many women experience positive tests for one pregnancy but not others – sometimes, it’s the first time around that it’s positive, while other times they will have negative GBS tests for the first pregnancies and then test positive in the 3rd or 4th pregnancy – but then be negative again for subsequent pregnancies. Because GBS is benign for most women, it can come and go without anyone knowing about it.

There is a very easy way to greatly reduce any risks to the baby from GBS – I can just get IV antibiotics during labor in order to reduce the population of the strep bacteria during delivery. But that means that I will definitely have to do two things during birth that I was hoping to avoid – have an IV (I know, I’m a wimp) and be at the hospital fairly early so that they can start delivering the antibiotics at least four hours before birth. It’s no guarantee that nothing will happen to the little guy, but it reduces the risk of GBS transmission from 1 in 200 to 1 in 4000.

I don’t like those odds.

Because we have extensive experience with reducing bacteria colonies, I had a number of questions for the midwife who delivered the crappy news. First and foremost, why would they wait until labor to treat the infection? The midwife’s answer was that “it wouldn’t work,” but that’s not entirely correct, according to the internet. The actual answer is that you can do oral antibiotics and eliminate the infection, but because the bacteria live in the intestinal tract, they can re-colonize at any time – so there is no guarantee that the infection would be gone at the time of delivery. She also told me that the only antibiotics they can use to treat this particular infection are penicillin, amoxicillin, or Ancef. Again, I know this isn’t true – even though GBS is slightly different than the group A strep that causes some of Gracie’s infections, it responds to most of the same antibiotics. So, yes, the “cillins” will work, as will Ancef, but there are other options that also target strep – Keflex, for example, which is a cephalosporin like Ancef, and Bactrim, and Cipro, and even the “big guns” – vancomycin and daptomycin and linelozid.

The new midwife didn’t know who she was talking to.

It’s not her fault that she usually delivers this message to people who have no medical knowledge and hadn’t adjusted the delivery for someone who can speak the language, but I do wish she had exhibited a bit more respect once she found out that I could communicate intelligently. It’s the same old thing as with many other doctors – they make the mistake of underestimating special needs parents. It’s a familiar battle but no less obnoxious.

The next question was a practical one, but related to the first. What happens if we don’t have four hours from the time we get to the hospital until delivery? She did not answer this question to my satisfaction, either. She said that we would have to stay inpatient for a full 48 hours after birth if we did not have four hours to deliver the antibiotics. While that may be true, again, the internet delivered a more comprehensive answer. Essentially, they want to deliver two IV doses four hours apart, so if there is not a four-hour window between arrival and delivery, they will only be able to do one dose, which is better than nothing but not ideal.

I did mention that if there were ever a family the pediatrician would discharge early, it’s us, since they know us so well and know we’d be on the watch for any unusual symptoms. The midwife chuckled but she didn’t seem to agree or understand what I was really saying. She has no idea about the extent of the medical experiences we’ve had with Grace. Again, it’s familiar but obnoxious.

Ultimately, this new wrinkle is upsetting and unfortunate, but as with everything else in life, we will get through it. I really wanted to have my ideal birth experience with this kid, since he will be our last, but that’s not going to happen. And that’s okay – after all, it’s MUCH more important that Elliot is safe than that I have my ideal birth experience.

I am still worried about his chances of contracting a serious infection, although it sounds like the chances will be greatly reduced if I can get to the hospital early. Chad commented last night that it’s “Grace trauma” rearing its ugly head, and that’s probably true. We went through so much with her (we still are going through so much with her) that the thought of doing it all again with another kid is exhausting.

I do have a plan that I’d like to propose to our regular midwife when we see her next Friday. If we can do a 14-day course of oral antibiotics, that should reduce or eliminate the GBS colony enough that it’s no risk to the baby at birth. Fourteen days would be more than enough, since they don’t want me to go past 40 weeks and I know I’ll be induced at 41 weeks at the latest. It doesn’t make sense to me to wait – because the only risk to the baby is if my vagina is colonized with this bacteria (which it still may not be; the colony may be solely in my intestines), why not eliminate the threat ahead of time and create a greater chance of him being healthy at birth?

I know our regular midwife will at least have an intelligent conversation with me. She understands that I’m not the average pregnant woman, and she definitely understands that Grace is not the average child – she was also traumatized by Grace’s birth, apparently, because she has mentioned many times particulars of the birth that continue to stand out to her nearly eight years later.

None of us is ever guaranteed a healthy child or a perfect birth. I am trying to remember that. But in the meantime, I’m saying lots of prayers that Elliot is as healthy as possible, knowing that the outcome is beyond my control. Hang in there, little guy! We’re going to do the best for you that we can.

 

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VBAC

Every day brings us a little closer to welcoming our newest baby, Elliot. Today, I’m exactly one month out from my due date — it’s getting real!

When I was pregnant with Gracie, everything went wrong, including the birth. Grace was transverse breech, which meant that she was laying sideways in my stomach. She would flip back and forth daily, but her head would always be on the side — never down in the birth canal where it belonged. Really, she was just expressing her uniqueness! She has never been one to follow convention.

Grace would never have been born without the modern miracle of the c-section. So many aspects of modern medicine have impacted her life and kept her alive through the years, and her birth was just the beginning of that. Thanks to a relatively safe surgery, she was born alive and I was kept healthy, other than having to recover from the surgery.

Jackson was born “the traditional way,” as I like to tell the kids. Other than being induced and having an episiotomy, it was all natural and really a beautiful experience. I healed very quickly from Jackson’s birth — within a week or so I was mostly back to normal, and as soon as the cut healed I was fine. That was not my experience with Grace’s c-section, though.

I vividly remember how long the recovery took with Grace. It was weeks before I could make transitions (sit to stand, lay down to anything, etc.) with any semblance of comfort. It was months before I really started to feel like myself again. It was years before my scar didn’t hurt with each menstrual cycle. C-sections are major surgery — the doctor makes a 10 cm (3+ inch) incision through multiple layers of tissue, including abdominal muscle, then stretches it wide enough to pull the baby through head-first. For Grace, because she was transverse, they had to turn her before they could pull her out, which was also very challenging.

Grace also reacted badly to the pain medication I was taking (Percocet). It was nearly impossible to wake her for the first week or so of her life. Finally, my mom suggested that I try to wean off the pain meds to see if that would help her wake up. It did — she was a much more alert baby when I stopped the meds — but it also left me hurting much more than I had been. Ibuprofen alone is not enough to dull the pain of such a major surgery.

I do not want to go through that again. Even though in my head I know that the only important thing is to get the baby out alive and as healthy as possible, I can’t help but remember the long and painful recovery. My biggest hope for this pregnancy is that I can go into labor on my own, stay home for the first stages of labor, then go to the hospital right when the pain gets unmanageable and deliver the baby there. My biggest fear, other than something unmentionable and catastrophic, is having to have another c-section.

On Wednesday, I will find out if I am allowed to consent to a VBAC (vaginal birth after cesarean). I have to meet with the doctor who performed the last c-section (rather than the midwife I’ve been seeing this whole time). I will have another ultrasound to make sure the baby is head down and there aren’t any other problems, and then, if all goes well, I can consent to the VBAC. I am trying to be patient and not worry too much about what will happen Wednesday, but the fear is always there in the back of my mind.

I find myself measuring where Elliot’s hiccups are. Hiccups are generally a function of the upper body (head, chest, and stomach), so if I feel them at the bottom of my uterus, it makes me think he’s in the right position. However, sometimes they are not at the bottom. Sometimes they are on the side or at the top. This makes me panic a little every single time. What if he’s breech? What if Gracie stretched out my uterus so much that he has plenty of swimming room? What if I have to have another surgery? These kinds of thoughts are completely useless, and yet they are exactly the sort of worries that are hardest to assuage.

But time will tell, I suppose. We will find out Wednesday if he’s in the right spot and if everything looks good. And truly, the most important thing is getting him out safely. After all, without a c-section, Grace wouldn’t have been born — she could never have come out on her own. And look at her now. She is a sweet, wonderful, kind, amazing young lady. She was worth every bit of painful recovery. I wouldn’t change any part of her, including her birth story. She is worth all of it, and I know Elliot will be, too, no matter what happens. But still, I’m keeping my fingers crossed for a natural birth!

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Baby Blues

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We are all very excited about our newest family member. Elliot’s due date is August 6, which means I’m now only a few days away from the third trimester. Mostly, this has been a joyous and exciting pregnancy. Mostly, the typical pregnancy symptoms have been manageable and not too problematic. Mostly, we are filled with excitement to meet this little guy.

It turns out, though, that we still have some residual trauma from Gracie’s pregnancy and birth.

With Gracie, we found out there were problems at the 22 week ultrasound. I very much remember being so excited that she was a girl – the lack of “outdoor plumbing” was obvious with her. I remember the tech going over all her other measurements, and I remember saying something like, “oh look, there are her kidneys – you can see them really clearly – how cool!” After the ultrasound, the tech asked us to wait in the lobby until we could see the midwife again. I still didn’t realize anything was wrong, even though I wondered why we needed the midwife. It wasn’t until we were in the room with her that we found out that you’re not supposed to be able to see a fetus’s kidneys that clearly. Gracie had echogenic kidneys, and we would have to follow up with a neonatologist to find out more about what that meant for her.

From that point on, nothing was easy. We saw the neonatologist every month after that. Gracie’s kidney issue resolved by the time I was 7 months pregnant, but then she turned and was breech. I remember the neonatologist lamenting, “What am I missing?! That is such a classic sign of developmental problems, and yet everything seems normal.” She was the first doctor stumped by Gracie, but certainly not the last. I like to say that Grace has been puzzling doctors since before she was born.

Grace was also very active in utero. She was transverse breech, which means sideways, and she would flip from one side to the other quite frequently. The day of her birth, we scheduled a version and a c-section. If the doctor could not succeed in turning her with the version, we would go ahead with the c-section. It turned out that the doctor did succeed in turning her, but the moment he moved his hands she turned right back. I distinctly remember him remarking that he’d never seen a full-term baby move so much. At one point, her knuckles were clearly outlined as she grazed her hand across my stomach.

After the c-section, Gracie was breathing very loudly. I knew that c-section babies were more likely to have lung problems, and pointed it out to the nurses. They quickly whisked her away to the NICU, where Chad followed, and I was left alone with the medical folks while they stitched me up and wheeled me to recovery. That was the longest couple of hours I’ve ever felt in my life – I remember trying to will my toes to wiggle so I could go see my beautiful baby girl.

The rest of the story continues in much the same way. Grace was diagnosed with tracheomalacia at birth, which is a weakness of the trachea. She was breathing loudly because her trachea wasn’t strong enough to support a full breath. (I often wonder if she would have survived a vaginal birth – it seems that maybe her trachea would have been completely crushed under the pressure of the birth canal). She eventually outgrew the tracheomalacia, but then she started getting pneumonia, which she had five times in a year. She also didn’t meet her gross or fine motor milestones until she started physical therapy at 7 months of age. Every time one thing resolved, another cropped up, and that pretty much still continues to the present day.

All of that trauma from Grace’s pregnancy and infancy seems so distant, and yet so fresh still in our minds. Even though everything has gone perfectly with Elliot’s pregnancy and all signs show that he’s totally healthy, I can’t help but worry. It was hard to be excited about the mid-pregnancy ultrasound until the tech assured me that everything was completely normal – even his kidneys. I find that the only thing that reassures me is hearing his heartbeat once a month at our regular midwife appointments. For those few moments, I can breathe easy – I know he’s okay. But the in-between is painful; I can’t shake the worry that maybe they missed something, maybe there is something wrong, maybe maybe maybe.

It turns out that Chad is worried, too. I made a comment about Elliot being active the other day, and Chad shot back, “like Grace?” I totally understood. It’s hard to enjoy the little things when they turned out to be big things last time around.

The kids have their worries, too. (Grace is less worried than the rest of us. Of course, she always is – that kid is the queen of adaptability.) Jackson is worried that the baby will take me away from him even more than Grace does. He is worried that everyone will completely forget about him once someone newer and cuter comes along. Grace’s concern is similar – she seems to be worried that I won’t have time for her once there’s a new baby in the picture. I have tried to assure both of them that they’ll still be my special buddies, but neither is convinced.

We all know that adding a child to the family will change everything. Our whole dynamic will change. I am trying to maintain perspective that it will only increase the amount of love we all share. After all, everything that we’ve been through with Grace has strengthened our love for each other. Yes, it’s been traumatic. Yes, it’s been hard. But our lives are all richer because of her.

I’m sure that will happen with Elliot, too. I can’t wait to meet this cute little guy. I know we’re all going to fall head over heals in love with him once we meet him in three months or so. And until then, we will continue to work through our trauma so that we’re ready to give this little person all our love.

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Gracie’s Bill

It seems that the time between my posts gets longer and longer. There is a good reason for that. In addition to being a pregnant mom and working two jobs, I have a few side projects going on. One of them is a piece of legislation affectionately known as Gracie’s Bill.

A few years ago, we lost Gracie’s best doctor when she left our hospital and went to another hospital in the area. I received a form letter from our hospital the day she left to inform us that she was no longer with the hospital. A few weeks later, that doctor, Dr. D., called me on my cell phone to let me know that she was bound by a non-compete agreement and was unable to see any pediatric patients—including Gracie—for two years. She wasn’t even supposed to call me, but she cared about us as much as we cared for her, and she felt like we deserved to know what happened.

Because I work in the legal profession, my first thought was, “But wait! Non-competes are disfavored in Colorado—how can she be bound by one?” I looked up the relevant statute (Colo. Rev. Stat. § 8-2-113, for any other legal nerds out there) and found out that actually, physicians are specifically allowed to be bound by non-competes in Colorado—there is an explicit exception for physicians. I was shocked and dismayed.

Shock eventually turned to action, and I started questioning how to change the law. I reached out to the Colorado Medical Society and spoke to their lobbyist. She informed me that although CMS was unable to work on this legislation due to other, bigger issues, they get many calls complaining about physician non-compete agreements, and I should keep working on the issue.

I did.

I researched my local senator and representative. Although neither was someone I would have voted for, I was their constituent, and I decided eventually to reach out to the woman, my senator, thinking she may be more sympathetic as a mother. We met in the summer (after the May end of the legislative session), and she agreed to advance the legislation the following year—IF she was reelected.

That senator had a contested election race versus someone I personally know from a different point in my life who is aligned with me politically. Despite the promise of a personal favor, I had to vote for and support the candidate opposing her—the person I knew from years and years ago. Thankfully, the candidate of my choice won the election! She is a good person who is smart and compassionate, and I am very glad for her that she was elected.

After the election, I waited a while to contact her about the physician non-compete statute. She was very busy, but she remembered me from way back when and agreed to meet. Both of us are busy moms, and it took a while for us to get together. But when we finally met up, she immediately agreed to try to help us, and started of thinking of possible solutions that would be acceptable to all of the stakeholders. She knew it was too late in the 2017 legislative session to advance a bill, but promised to write one for 2018.

Senator Z. is true to her word. She introduced SB 18-082 in the beginning of the 2018 legislative session. Instead of eliminating the clause that allows physicians to be bound by non-compete agreements, she decided to carve out an exception for physicians who treat patients with rare diseases. That way, she would not be opposed by the major stakeholders—the hospitals and hospital associations.

She received support from several medical organizations, including the Colorado Medical Society, the major medical liability insurer, the Colorado rare disease community, and more. In fact, no one opposed her proposed legislation. She scheduled the Senate committee meeting and asked me to attend to testify on Gracie’s behalf.

Words are my forte. I am a writer, and although I’m not usually a speaker, I knew I could write something compelling. So, I wrote the following proposed testimony:

Thank you, Senators, for allowing me to be here today.

My name is Susan. This is my daughter, Grace. Grace is 7 years old. She loves Taylor Swift, mermaids, and puppies, and she has a rare disease called Posterior Column Ataxia with Retinitis Pigmentosa. This means that she has ataxia, or poor balance, she is legally blind, and she does not feel pain.

Not feeling pain has been the hardest part of her condition to manage. We figured out she couldn’t feel pain when she was about a year and a half old. She would get round wounds on the tips of her fingers, or deep cuts in the creases, and we could not figure out where they were coming from. Eventually, one Easter Sunday, she got a deep cut on the crease of her right index finger, and we knew she hadn’t been around anything sharp—except her own teeth. Her physical therapist questioned whether she could feel pain, and we thought back on all the times she banged her head without crying or kicked her heels into her high chair, and we realized she could not. That realization led to a long and arduous medical journey with many, many doctors in specialties I’d never heard of before, like Infectious Disease.

Gracie has had many, many infections in her short life. She has been hospitalized about 15 times, always for some type of infection. Some of these infections were very serious, even requiring amputations of some of her fingertips. We have relied on infectious disease doctors to manage her infections and find medications to prescribe that she is not resistant to. We have had mixed luck with infectious disease, but in 2013 we found Dr. [D] at Rocky Mountain Hospital for Children. Dr. [D] was a Godsend. She understood the complexity of Gracie’s care. She listened to my concerns and answered my questions honestly, never getting offended if I questioned a particular treatment. But in January 2015, she left Rocky Mountain and went to a different hospital. Unfortunately, the terms of her non-compete agreement prevented her from talking to us or having any influence on Gracie’s care.

We still have not found an infectious disease specialist who understands Gracie like Dr. [D] did. Grace has had some infections in the past few years that became very serious because she was not prescribed the right medication in time by her new infectious disease specialists. Her new infectious disease doctors try to treat her like a 7-year-old with a normal immune system, not comprehending the seriousness of her condition. If Dr. [D] could have continued to help with her care, I believe the doctors would have treated Gracie more quickly and she would not have spent as much time in the hospital.

Senators, please, I urge you to support this bill. It is very hard to find doctors who understand and who are good at treating patients with rare diseases. To lose them to a non-compete agreement is absolutely devastating. Please consider my daughter and all other children and adults with rare disease when voting on this bill.

Thank you.

I brought a picture of Gracie to woo the senators—because who can look at her adorable face and say no?

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Senator Z. warned me before the committee hearing that this was a “kill” committee—that likely the bill would not make it out of the committee. I tried not to get my hopes up, but I knew I had a secret weapon—Gracie. She is the most charismatic person I’ve ever  met, and maybe, just maybe, seeing her picture and hearing her story would be enough to convey to this Senate committee that she was worth voting for.

Miraculously, beautifully, unbelievably, it worked. Gracie’s Bill passed out of the kill committee with a 4-1 vote. It would likely pass through the Senate with no further opposition, since it made it through this committee.

Around this same time, our local CBS station contacted me to do a story on the bill. The reporter came to our house one snowy February day and interviewed me and Gracie. She did an amazing job with the video editing, and produced a feel-good story I was proud to share: http://denver.cbslocal.com/2018/02/19/gracies-bill-girl-cant-feel-pain/

(For some reason, I can’t embed the video. Click on the link above to watch it on the CBS page.)

The bill passed through the Senate with only one “no” vote—from the same senator who voted “no” in the kill committee. I met with the representative who would carry the bill in the House, and he agreed to hold the committee meeting on the morning of March 13. Again, I would testify in support of the bill. I amended my prepared testimony to be pertinent to the House committee members, and nervously readied myself for the hearing.

The House committee hearing was much more stressful than the Senate committee hearing. Perhaps it was because I had been told to expect the bill to die in the Senate committee, and I was hoping it would advance through the House. Perhaps it was because the logical part of my brain knew the delay between the Senate and the House had given the opposing political party members time to find excuses for opposition. Nevertheless, I was very nervous going into the hearing.

My testimony went well, and the committee members asked me very good questions about Gracie’s care and the impact this bill could have on her. I was even able to say at one point that although this bill would never get Dr. D. back for us, it would be important for so many others, and I am doing it for them, not me. (It’s true. I don’t think we’ll ever get Dr. D. back, but we may be able to prevent this situation from happening for other people.)

The bill passed out of the House committee on a straight party line vote. Many of the politicians who voted against it said they would support it if a proposed amendment was adopted. I was not sure if this was truth or just lip service, but graciously accepted their platitudes. The bill was up for 2nd Reading in the House last Friday, and, true to their word, those politicians who had opposed it in committee spoke in favor of the bill (as amended) on the House floor. Third Reading in the House happened quickly and uneventfully this Monday morning. And today, the bill was returned to the Senate for approval of the House’s amendment.

I am happy and relieved to say that the bill has now passed through all stages of consideration in the Senate and House. Its next stop is at the desk of our governor, who has no reason to veto and will certainly sign the bill. I do not know yet if I will be able to attend the bill signing with the governor, but it would be very cool if I could attend. I might even bring Gracie. After all, she is the amazing one who has been the impetus for this whole thing.

Now, time for another side project… maybe I’ll start trying to find childcare for the summer. That’s a whole different battle!

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