Escape!

February 26, 2014 § 72 Comments

On Wednesday, February 19th after learning that our boy had not grown at all in the past two weeks, I had the most amazing cesarean birth experience I could have imagined.

And at 4:21 and 4:22 PM, our sweet babies were born.

World, meet Etta and August.

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These photos are from just after birth, so they look a little different already. Many more pictures to come.

I am home. Home after a month in the hospital. The emotional confusion of that transition deserves a post itself. Neither baby was able to be in the room with us after they were born, and they were in different places, so we had to run back and forth to see them. Doing that while having to pump and eat and sleep was really, really hard. Recovering from major abdominal surgery has been cake compared to having a sick child (and a well child) who are separated from you.

Guys, they are tiny. But so mighty. Etta needed no NICU time. She spent her hospital stay in the special care nursery, away from me and hooked to monitors, but was able to come home with me on Monday. She’s now weighing in at around 4 lbs 12 oz. August, who has dropped to 3 lbs and it’s hovering right around there, will be in longer. He’s in the NICU, but he’s doing well. He’s just very skinny. All limbs, that kid. From the start, he was eating breast milk by bottle and breathing without issue, but they’re increasing his feeds a lot, so he’s getting fatigued trying to keep up, and they ended up having to drop a feeding tube Sunday night.

His bilirubin  has also been a bit high, so he has to be under the lights and can’t be held that often. He gets upset and there is no way to comfort him. He also startles a lot because he can’t be swaddled and because he’s blindfolded by his hip baby shades. It’s heartbreaking. He’s coming off today, though, so you better believe that little man will get all the loving he wants over the next few days.

Packing up the fam and heading to the NICU now. Much love to you all. Your support and encouragement have meant the world.

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33 weeks, 6 days: Close calls, interdoctor discord, and THE PLAN

February 13, 2014 § 34 Comments

Still pregnant! But holy, cow.

Crazy days, my friends.

Last Wednesday, I got my rankings submitted for the next phase in my clinical training. In 9 short days, on Match Day, we’ll know where our little (all of the sudden not so little) family is going to be living next year.

And then on Friday, we very nearly met the new members of that not so little family.

Friday was one of the most stressful days of my life. It was the first day I have had to make a serious decision for these children. My children. It was the first time I felt the weight of that – of being someone’s mother. The mother to two particular someones. Two small humans who have only me and The Artsy Engineer and who need us to make the right choices. It was so heavy. My throat closes up a bit thinking of it.

Since the last time I updated, things have fluctuated considerably. A few days after I wrote that post, they sent me home to continue bed rest there, because baby boy’s cord blood flow was consistently showing continuous (but still reduced) end diastolic flow. That lasted for under 36 hours. I got home on Monday evening and was readmitted a week ago today on a Wednesday morning after they saw intermittently absent flow again on the Doppler ultrasound. We were disappointed, but I knew the respite from the hospital would be temporary. I was just really really hoping for another couple of nights of dog snuggles and home cooked meals that my husband doesn’t have to unpack from a cooler. The good news about that Wednesday (32+5 weeks) was that we had the growth measurements taken again (as they only do it every two weeks to minimize error), and both babies had pretty solid growth estimates. Baby girl had gained a full pound and was estimated to be 4lbs 4oz and baby boy had gained 3/4 of a pound and was estimated to be 3lbs 6oz.

Then on Friday, my friends, it got real. The flow went back to absent end diastolic flow and the proverbial shit hit the proverbial fan. If you peek back at that last update, absent end diastolic flow is what was going on when I was admitted in the first place. The exact same issue. I was only 31 weeks then, but the data was the same. I had a particular protocol that the perinatologist (MFM doc) recommended and that my OB implemented. It involved 3x/day NSTs and 3x/week ultrasounds, bed rest, and steroid injections. However, I am situated at a major academic medical center, which has a lot of really excellent benefits but which also means that there are LOTS of people involved on my team. It’s a big freaking hospital with the highest ranked NICU and perinatology program in the state. But on Friday, the perinatologist who I had been seeing all along was out for medical treatments and that meant that I would be passed along to the others, depending on who could squeeze an inpatient into their schedule. There are 7 of them. This is apparently how it typically goes for people, but my OB had arranged it so that this particular perinatologist  would see me whenever he could. With him out of commission for 2 weeks, I saw this new guy. This new guy was described as “excitable” by several people before I met him, and I wasn’t sure what they meant. It could be demonstrative excitable, which is not a bad thing at all and was frankly what I was picturing, but it turned out that they meant more of the high-strung, impulsive, temperamental flavor of excitable. Bummer for me, apparently. Because he walks in, and with no further ado, he says, your baby has absent flow and you’re past 32 weeks and so there is no sense of waiting around until reversed flow because of risk of stillbirth so I am recommending that we deliver your babies today. BAM. Just like that. I’m all alone, sitting in his outpatient clinic office on the exam table, and I can’t walk anywhere or escape (which is strangely what I wanted to do) because if I look like I’m going to pass on the wheelchair, people get all concerned like.

By the time I got back to my room, my OB was there waiting for me, and he was not pleased. Pacing, fired up. He had to lecture to medical students, so he said that he was going to leave but that he’d be back 2 hours later to have a conversation about what we wanted to do. He had me call Bryan in and stop eating and drinking in case we decided that we wanted to proceed with the c-section that afternoon. Apparently, he had asked the perinatologists to speak with him before speaking with me and especially before making any specific recommendations to me, because he knew how different their opinions regarding what to do with absent end diastolic flow at 32, 33, 34, etc weeks.

When he came back, the three of us talked it out and decided to wait and try to squeeze out a little more time. We just felt as though this was the SAME DATA we’d had when I was initially admitted. Babies continued to look great on monitoring, BPPs were excellent, and there was absent flow. The only difference was that I was now past 32 weeks, so this doctor decided he thought the risk of leaving him in was now greater than the risk of taking them out. To appease this doctor, we’d increase monitoring to daily ultrasounds to look for reversed flow and do continuous fetal monitoring except when sleeping and eating (although I was woken up between 1-2 in the morning for a briefer monitoring session). The trickiest part was that my OB was leaving town for the weekend and was unreachable until Monday night and thus could not act as an advocate. He left saying that he’d tried to tie down all of the loose ends he could, but that he couldn’t control it once away. If whatever perinatologist did my scan on Saturday or Sunday or Monday suggested delivery and the OB on call agreed, we’d be delivering. He spoke with all of the OBs who were on call over the weekend to try to tell them the situation, but he wasn’t sure it would be enough.

I won’t go into all of the details of the weekend, because this is getting long enough (and confusing enough) as it is. But I was essentially told that my plan of care was being changed by every single doctor who came in the room, which amounted to about twice a day. One said that using a different set of norms our boy was actually not growth restricted at all (that he was at the 20th percentile rather than below the 3rd) and put me back to 3x/day monitoring. The next told me that babies were doing great and they’d deliver me at 34 weeks unless something changes before then (this is the first I’d heard of a 34 week cutoff). The next said that she wanted me back on continuous monitoring (even though nothing has changed) and that there was talk again about delivering that day. The next said that there was no way continuous monitoring made sense and that I would also be changed from full bed rest to modified bed rest but that our boy is, in fact, IUGR based on the set of tables that they just switched over to using and that is used in much of the recent research. I did my best to let it go in one ear and out the other and to just hold down the mental fort, so to speak, but it was tough. Without my OB here to be the ringleader (and he is, in fact, the ringleader), I was left to the devices of a group of practitioners who practice as individuals. We didn’t know how to gauge our fear and anxiety. Should we be as concerned as doctor number 1? Did I want continuous monitoring because any minute my baby could die? Or should I be as concerned as doctor number 3, who was clearly confident that there would be indicators of fetal distress leading up to something catastrophic that we could catch using less frequent monitoring. Etc etc. It was a nightmare, my friends, and I think I am just coming down from it.

Nobody signs up for randomized clinical trials and signs on to put their babies at risk, so there isn’t a lot of research for these doctors to go off of. There is no standard of practice for absent end diastolic flow in the umbilical arteries, here at this hospital or anywhere else. My OB pushed the 7 perinatologists to meet and come up with some guidelines that they all agreed on, and yesterday, finally, they did.

So. The plan.

Before 34 weeks: Either absent or intermittent end diastolic flow mean closer monitoring but not delivery. Reverse flow, less that 200g growth in 2 weeks, or indicators of fetal distress on the monitors or on the BPPs mean delivery.

After 34 weeks: Intermittent or forward mean I get to stay pregnant (provided that indicators and growth are okay). Reverse flow OR absent flow mean delivery.

Regardless, delivery no later than 36 weeks. Which means that my OB scheduled our c-section for Friday, 2/28. Two weeks from tomorrow (and one week after Match Day).

So, essentially, if they see absent flow after 34 weeks (which, ahem, is tomorrow), they will choose to deliver me that day. My ultrasounds have gone like this intermittent, absent, intermittent, forward, forward, forward, intermittent, absent, absent, absent, intermittent, intermittent.

Tomorrow I am at 34 weeks. From here on out, every Monday, Wednesday, and Friday are scan days and are going to be the decision points. If you look at the list above, I received a round of betamethasone (the steroids to help with fetal lung development) on the first day there was absent flow. Flow then improved and did not go back to absent for 10 days. If you ask the perinatologists, they’ll tell you that there is no research in support of betamethasone improving flow but that they see it in practice often enough to notice it. They would never give it for that reason alone, but because I was due for a booster (it had been two weeks since the last injection and I was still before 34 weeks), they would be interested to see if it might buy me an extra week or so before I would go back to absent and need to deliver. I got my booster on Tuesday and Wednesday, and baby’s flow was improved to intermittent on Wednesday’s scan. If the steroids are part of what helped the last time and it follows a similar trajectory, perhaps I can make it to the 21st (Match Day and the day I turn 35 weeks) before it turns absent again. I’d love to make it through the weekend and buy just a few more days.

But I could also go in tomorrow and see absent flow and deliver two tiny babies, one estimated to be just under 4 pounds and the other estimated to be just under 5 pounds, within a couple of hours.

I’m on the scan schedule for 7:10 AM. Wish us luck, friends.

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* That was going to be an earlier post, because it was a very, VERY upsetting development for me. Apparently our baby girl, who is closest to the cervix, is footling breech, and because of the way our boy’s bag of waters has settled in around her, we have known for about a month that it is highly unlikely that she’ll be able to turn. My doctor will deliver vaginally so long as Baby A is vertex, regardless of the position of Baby B. He will happily do a breech extraction for Baby B. Baby B is moving all around still, flipping vertex to breech to transverse to breech to transverse to vertex daily (I know because I get ultrasounds ALL THE TIME). But it’s Baby A who makes the decisions here, and she’s not turning for us. I cared A LOT about this a month ago. I could care less now. I’d be thrilled if she shocked us and turned after 6 weeks of being in one position, but it ain’t gonna happen. And now, with all of this, I just want some healthy babies to come out of me – through vagina or uterine incision or nostril. I don’t love it. But I have bigger things to fret about.

32 weeks, 3 days: On becoming an inmate

February 3, 2014 § 37 Comments

I’ve written update posts several times, but before I’ve been able to finish any of them and press GO, something changes and makes it no longer relevant.

Let me try to give you all a bit of a timeline. Last Tuesday, when I was 30+4, our baby boy’s growth had majorly slowed. He was sitting somewhere around the 10th percentile after measuring solidly in the average range on previous scans. To try to figure out what was going on, the MFM performed an umbilical artery doppler assessment. The purpose of this is to look at the blood flow through the umbilical artery during peak diastole (when the heart is at its’ most relaxed). Flow in the umbilical arteries ought be in the forward direction. If the placental resistance increased for some reason, the diastolic flow may reduce, then become absent and finally go into reverse. Below is what you might see on the ultrasound screen when there is “healthy” flow. See how the tops of the valleys between the peaks are well above the line? This is essentially what our girl’s looks like.

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My understanding is that toward the end of all of all pregnancies, the placenta matures and doesn’t function as efficiently. This is supposed to happen slowly over time and to not cause problems (and is also one of the reasons they talk of induction post-due date). But our boy’s placenta seems to be deciding to quit early. I grew it wonky, and it’s making its’ displeasure known. The image below will help explain.

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Umbilical artery Doppler velocimetry: (1) normal pattern; (2) reduced end diastolic flow; (3) absent end diastolic flow; (4) reverse end diastolic flow

The top line is normal. A week and a half ago, when we discovered that there was a problem, there was reduced end diastolic flow that was also intermittently absent. So, the space between the valley and the line was small, and every once in awhile, there would be a big gap where there was no valley showing at all. This got me on schedule of biophysical profiles (BPPs) and umbilical artery dopplers twice a week with MFM. Three days later it looked the same. No change was good.

The following Tuesday when I was 31+4, I saw my OB first thing in the morning. This was to be followed by a MFM appointment. I don’t think I had quite wrapped my head around the seriousness of the situation until my OB told me that he was going to do a quick ultrasound even though they were doing one down the hall at the MFM appointment in a couple of hours. I must’ve had a quizzical look on my face, because he then said, I’m doing this because if your baby has died, I want it to be me who tells you, not an ultrasound technician you have never met. I know this probably sounds incredibly insensitive. Heartless even. But I appreciated it. Immensely. He knew that there was no other reason to justify his looking, and he knew that I would know this. But he wanted to look anyway because it was important to him, and so he just decided to go ahead and tell me why instead of just making something up. Or saying nothing and leaving me wonderingknowing.

Incredibly, he later came to my MFM appointment. There we all learned that the flow had changed to continuously absent end diastolic flow (#3 in above image). The two doctors looked at each other, had a brief discussion right there in front of me, and I was admitted to the hospital in order to “tighten the safety net.” I was shocked. My OB had warned the week before that it could happen any time, but it still hit my like a truck. I cannot describe the fear we felt. Not only did it mean very likely early delivery of both babies and all of the risks and complications that come with that, but I also jumped to all of the worst case scenarios for our boy, like death. Or neurological and/or developmental problems from being deprived during such an important stage of growth.

I was allowed to go home and pack my bag and say goodbye to the dogs. And, guys, I cried the entire time.

I won’t be going home again until I am a mother.

I’ve been in the hospital for 7 days now. I was given the steroid shots on Tuesday and Wednesday to help speed fetal lung development, and I learned that the doctors thought it was likely that I would likely need to deliver within the week. In that picture included above, you deliver when you see #4. Reverse end diastolic flow. Now that I am in the hospital, my two a week BPPs and umbilical artery dopplers get increased to three a week. They also do fetal non-stress tests (NST) three times a day at 6 am, 2pm, and 10pm. For these I get monitors put on that are kind of like our home dopplers, and reactivity of heart rate to movement is measured for 20 minutes. You also deliver if there is a problem seen on one of these tests. So the level of monitoring is outrageous. But it’s allowing me to sleep at night.

It had been pretty quiet around labor and delivery the last few days, then last night and this morning things have really picked up. You could see the stress on the nurses faces. I am one of a number of “ante’s,” who are meant to be here long term. Everyone else rotates. They come in, labor, have their babies, and then move upstairs to the mother and baby unit. They try to stick the ante’s on one hallway so it’s quieter for us. I met one of them yesterday for the first time when we were both getting ourselves some orange juice. She said she’d been here two weeks already. She barely looked pregnant at all and I thought, I hope she has a long, long while left. When I woke up this morning to The Artsy Engineer bringing me blueberry pancakes and tea before heading to work (a variation of which he has done every day to prevent me from eating too much horrible hospital food), he told me that there was a labor bed outside of her door. All morning, doctors’ and nurses’ voices have floated past my door and into hers. And I can hear her crying. And tomorrow she’ll be gone. Hopefully with a small but healthy baby to visit in the NICU.

I’m also on strict bedrest, which is very interesting. I sit. ALL DAY I sit. I can get up for the bathroom and to take a shower. And every once in awhile to walk to the ice machine in the hall right outside my room to fill up my own water because dear god is it hard to let others do things as simple as this for you all day. The nurses come in once an hour to check on me during the day and every two hours at night.

My new digs.

My new digs. See the bassinet? It made me cry every time I looked at it during the first few days, knowing that my babies will not be with me when they first enter the outside world.

But you know what guys? It’s helping.

I had been warned that this sort of issue doesn’t really improve. It just gets worse (slowly or not so slowly) and then you have to deliver. But something is seriously, really really helping. Since I got here, I’ve had two additional ultrasounds. Both have continued to show reduced end diastolic flow (but not continuously absent and not even intermittently absent). This is EXCELLENT. The babies both continue to pass their BPPs (which is where they look at movement and heart rate and attempts at practice breathing using ultrasound). And I’ve been told repeatedly that our babies look great (even for their gestational age!) on the 3x/day non-stress tests. That our boy “does not look like a baby with cord blood problems.” So they both seem to be healthy and doing developmentally appropriate things in there, and no one is distressed. No one is distressed. On Friday, my MFM said that if he were a betting man, all of these things would lead him to place his bet on our being table to talk in weeks until delivery rather than in days until delivery. It still seems doubtful that I will make it much past 34, which is about a week and a half away at this point.

But man. I’m so so close, sisterfriends.

So I will continue to relax my ass off in this hospital bed for as long as I can if it means these babies can use the incubator on the inside of me instead of the incubators on the outside of me.

I can’t wait to meet them, but my body will miss them when they come.

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