Bowel Distension - Part 2

I talked to my perinatologist today about the bowel distension we noticed at yesterday’s ultrasound.  He was aware of the big segment I saw.  They first noticed it a couple weeks ago, and I remember one doctor saying something about it.  He said it will continue to get larger as the baby grows and the intestines grow.  Regardless, he still thinks that cooking the LW to 38 weeks is more important.  He reminded me again that the current medical wisdom is that extra-abdominal bowel distension is not an accurate indicator of future complications.  This is the case no matter how little or how much distension you see on the ultrasound (i.e., there’s not a cut-off amount).  Some babies with distension do end up having GI complications, but others don’t.  But we know for sure that lung maturity and gestational age are related to better outcomes.  So his opinion is that no amount of bowel distension is worth taking the baby before she’s full term, if we can get her there.  I’m glad that we’re still on the same course and that nothing has changed, but I’m also glad that I said something and can rest easier! 

I’ll have my next growth ultrasound on Wednesday.  Unlike bowel distension, this is something that could influence their decision on when to deliver me.  As you may remember from my last growth ultrasound, if she hasn’t grown at all within the past 3 weeks they could decide to deliver me now.  My belly has grown and she feels bigger to me, so I believe in my heart that she has grown, but who knows how the measurements will pan out.  So keep your fingers crossed that they work out in our favor! 

Finally, I had my AFI checked again today.  Long story short, my perinatologist wants to change my schedule a bit so that a nurse down here can do it rather than sending me upstairs to the ultrasound department each time.  Today they measured me at 7.2 compared to 5.8 yesterday.  Just goes to show how variable it can be depending on the technician and what they can see that day. 

AFI Update & Extra-Abdominal Bowel Distension

My AFI was 5.8 today compared to 6.8 on Monday.  The umbilical cord Doppler was still good.  The LW is still doing great on the monitor.  So everything is pretty much the same, but as expected, they are noticing more bowel distension as I get closer to term.  There is one segment in particular that looks really swollen.  Even I noticed it on the ultrasound and it was so big that I couldn’t even tell that it was intestine.  The doctors have seen this segment before, and they continue to say that when it comes to giving the LW the best head start she can get, gestational age is more important than extra-abdominal bowel distension.  See my previous post on this subject.  I also found a published study in the Journal of Pediatric Surgery that supports what the doctors are telling me.  The study identified four factors that were statistically relevant to length of stay in the NICU: 

1. Gestational age
2. If a silo is needed (compared to primary closure)
3. If GI complications occur (like atresia, perforation, or resection)
4. If other, non-GI anomalies are present

The study found that intestinal distension seen on prenatal ultrasounds is not an accurate predictor of length of stay in the NICU.  Some subjects with dilated bowel had GI complications, but others did not.  They concluded that distension produces many false positive predictions of adverse outcome, and does not reliably predict GI complications or the need for a silo.  However, the absence of bowel distension did reliably predict less complex cases and shorter NICU stays.  So basically, if you don’t see distension you know you’re in pretty good shape.  But if you do see it, it doesn’t necessarily mean anything.  You could still have a quick and easy run in the NICU with no complications, or you could end up having a more complicated case.

 

Despite what I’m being told and what I’m reading, I’m still having a weird gut reaction to this large segment of swollen bowel.  So I expressed my concerns to my ob/gyn when she came in today to check on me.  She has been my biggest advocate through all of this.  She comes to see me every day she’s in the office, she calls me on her days off if I have questions, and she reviews every one of the LW’s monitoring strips with a fine-toothed comb.  Like me, she is extra cautious about everything and always takes the most conservative approach.  But most importantly, she listens to all of my concerns and never brushes me off, and she always makes sure that I get answers.  If she can’t answer my questions she makes sure that the perinatologists do.  I told her that I know they generally don’t think that bowel distension is a reason to deliver me early, but now that I’m almost 36 weeks, is there a point where too much is too much?  Because this particular segment looked really big to me.  I told her that I wanted my primary perinatologist to look at the photos of the swollen bowel from today’s ultrasound and confirm that waiting to deliver me is still the best option.  So she is going to call him to review the photos together and he is going to stop by or call me tomorrow to discuss.  I’m proud of myself for listening to my instincts and voicing my concerns.  You can’t have that nagging feeling in the back of your mind when you’re in a situation like this.  I’m sure I will feel better after talking to him tomorrow. 

AFI and D-Day Update

Today’s ultrasound went well!  My AFI was 6.8, up from 4.6 last Thursday.  The umbilical cord Doppler was also good.  She’s still doing great on the monitor – no changes there. 

The technician also pointed out that the LW has some chubby cheeks, although they were hard for me to see because she always has her hands up by her face.   Even though this wasn't a full growth ultrasound, I know she’s growing because I’m getting bigger (and more uncomfortable).  And it's music to my ears to hear that she’s fattening up!  The bigger and stronger she can be, the better.    

Now for the exciting part… we have a likely birthday for the LW!!  My C-section has been scheduled for Monday, July 2.  That’s 21 days, folks!  21 DAYS.  Of course, it could be less than that if the LW decides to come early, and we all know that she likes to call the shots around here.  If she happens to turn into a head-down position, I would be induced that day rather than scheduled for a C-section.  But things are getting really cramped in there, and it’s harder for her to turn with low amniotic fluid, so I have a strong feeling that she’ll stay where she is.  

I’ll be 38 weeks and 2 days on July 2, 1 week and 5 days shy of my actual due date.  Almost all gastroschisis babies are born early, either on their own or by doctor’s orders.  Because the intestines get more and more irritated the longer they are exposed to the amniotic fluid, they like to get the babies out and on the road to recovery as soon as they reach full lung maturity, which is usually at 38 weeks.  (In case you’re wondering, I will not be getting an amnio to confirm lung maturity because they think it is too risky given the low fluid levels and the exposed bowel.)  So my doctors all agree that 38 weeks is an ideal time to deliver.  Let’s just hope that the LW concurs!

AFI Update and 4 Weekaversary

First things first: I had an ultrasound today to check on my AFI and cord Doppler.  The cord Doppler was fine but the AFI was down to 4.6, after being at 8.6 just three days ago.  Sigh.  These fluctuations have been happening the whole time I’ve been here, so nobody is really surprised.  The doctors say that as long as the LW continues to look good on the monitor, then we stick with the same plan.  Everything else is pretty much the same.  Extra-abdominal bowel distension, full bladder, stomach out.  The doctors still say that none of these things are red flags that would cause us to deliver the LW early.  

I should explain how they measure the AFI.  Basically they visually inspect each quadrant of the uterus (left top, left bottom, right top, right bottom) for pockets of fluid, which look like dark spots on the ultrasound.  They can’t use any pockets that have cord in them.  They measure the lengths of the biggest suitable pockets they can find and the computer spits out the AFI.  So it depends on what pockets the technician can find that day, which can be influenced by the baby’s position and how much she’s been moving around and stirring up the fluid.  It can also be tough to find big pockets with gastroschisis pregnancies because there is other stuff in there getting in the way.  So obviously there are a lot of variables and it’s not an exact science, which could partially explain why my AFI fluctuates so much.  

Today also marks 4 weeks that I’ve been here in the hospital.  The good news is that if I make it to 38 weeks, I’m more than half way there!  But I won’t lie.  As time goes on, this whole thing gets harder and harder.  I have good days and bad days, and I’ve figured out that ultrasound days are almost always bad days.  It’s just so hard to see my tiny baby on the screen with her organs all rearranged, and her bowels getting more and more distended, and know that there’s nothing I can do.  Even though I know I’m seeing things that everyone expects to see at this point, it’s impossible to keep doubt and fear from creeping into my mind.  As the ultrasound images pile up and D-Day gets closer, I get more and more nervous about what we’ll encounter when she’s born.  How damaged will the intestines be?  Will there be additional complications and/or surgeries?  There is no way to answer these questions right now.  All I can do is surrender to God and trust the advice of our doctors.  

I saw the hospital’s senior perinatologist today after my ultrasound, and he told me that when the day comes for us to take the LW home, and all she’ll have as a memento is a little scar on her belly, I’ll laugh when I think of all the worrying I did.  He reminded me that these babies almost always do just fine.  You just deal with things one day at a time as they arise.  My ob/gyn stopped by after that and reminded me that the LW has already shown us how strong she is during her monitoring.  All the signs show that she is going to be one tough cookie who will beat whatever is placed in front of her.  So many of my nurses have said the same thing.  So why do I still worry when the people who know what they're doing are so positive?  I guess I'm just a mom, and I’m allowed to have bad days and cry it out when I need to.  But when that’s over, it’s my job to make sure this little girl knows without a doubt that her dad and I love her and believe in her strength. 

AFI Update

Today we had an ultrasound to check on my AFI and the umbilical cord Doppler.  My AFI was 8.6, the highest it’s been since I was admitted to the hospital!  This still isn’t high enough to go home, but I’m not even thinking about going home at this point.  The important thing is that it’s not falling below a 4.0.  The Doppler was fine too which means that there continues to be good blood flow through the umbilical cord.  Everything else is pretty much the same.  Her bladder is still distended, but the kidneys look fine.  The stomach is still out.  There is some dilation of the outer intestines (which is normal) but no dilation of the intra-abdominal portion of the intestines (which is good).  She’s still passing her fetal monitoring sessions with flying colors, and I’m back to one hour every four hours on the monitor.  

We usually don’t get very good ultrasound photos these days because of the low fluid levels, but today we got a decent shot of the Littlest Warrior’s face.  If you look closely you can see the outline of her nose, lips, and chin.  I think the white line down the side of her face is her tooth buds.  I can’t wait to lay some serious smooches on those cute little lips!

The Littlest Warrior, 34 Weeks

Growth Update – Part 2

What a difference a day makes, especially when you’re at the mercy of pregnancy hormones!  I’m feeling MUCH better today after talking to our perinatologist (a doctor who specializes in high-risk pregnancy conditions).  In fact, I always feel better after talking to him.  He was the doctor who first diagnosed us and we see him at least once a month, so we’ve grown pretty close.  He’s extremely knowledgeable about gastroschisis, very cautious, and honest and straightforward in answering all of our questions.  We trust him 110%, and that’s something you can’t place a value on when you’re in a situation like ours.  Let’s just say he’s getting a REALLY nice fruit basket after this is all over.  

The basic gist is that they’re not seeing anything they didn’t expect to see and there is still no reason to deliver me early.  Yes, the LW is petite, and it would be nice if she measured a little bigger.  But he kept emphasizing that weight measurements for gastroschisis babies are notoriously inaccurate (see my post from yesterday).  They’re not something you want to hang your hat on.  Furthermore, the farther you get in the pregnancy the more the abdominal circumference factors into the equation, so the more inaccurate the prediction gets.  The important thing is that she IS growing.  Even when you factor in the underrepresented abdomen, she’s gained about ¾ of a pound since she was last measured 3 weeks ago.  Her head and femur bones grew and are much closer to average.  So he is not even putting her in the category of “growth restricted.”  They’ve also been measuring the umbilical cord doppler, which tells you how much blood flow is getting from the placenta to the baby through the umbilical cord.  Those measurements have always been excellent.  The main concern with low growth is that the baby isn’t getting nutrients from the mother.  But since the LW is growing and since there are no placental problems, they’ve ruled that out.  The LW is simply your average gastroschisis baby.  And for reasons that aren’t totally understood, these babies are almost always small. 

With regard to the intestines, they have noticed some segments of distended bowel in the past 2 weeks, which they expect to see at this point in the pregnancy.  This is because the bowel starts to get irritated after floating around in the amniotic fluid for so long.  They often compare it to your skin after you’ve had it underwater for a long time.  They really can’t tell how good or bad of a case it will be until the baby is born.  They look at the intestines in utero and they “hem and haw” (doctor's words) over what it might mean, but this almost never influences the decision to deliver early.  One exception is when the ultrasounds show distension in the intra-abdominal portion of the intestine (i.e., the part of the intestine that is still inside the body).  Some studies have shown that intra-abdominal distension COULD indicate a more complex case of gastroschisis.  But even then, it doesn’t always warrant early delivery.  Fortunately for the LW, they haven’t seen any intra-abdominal distension.  The distended segments are in the portion of the bowel that is outside the body.

There is also a chance that her stomach could be outside now.  It’s not uncommon for the stomach to slip in and out of the hole in the third trimester because it is connected to the intestines and things are starting to get crowded in there.  They haven’t seen the stomach for the past couple of weeks which either means that it has slipped out or that she hadn’t swallowed any amniotic fluid at the time, which fills up the stomach and allows them to see it on the ultrasound.  Although this sounds scary, according to our perinatologist and pediatric surgeon, it happens.  If the stomach has slipped out it doesn’t change her treatment, recovery time, or overall prognosis.  They just put it back in with everything else.

The last thing they’ve been keeping an eye on is her bladder, which has been full at every ultrasound I’ve had since I was admitted to the hospital.  That is definitely contributing to my low AFI.  The amniotic fluid is constantly being recycled through the baby as she swallows it and pees it out.  Yeah, gross.  For some reason, the LW likes to hold it in.  At first they thought she might have some sort of blockage, but if she did things would back up into her kidneys and her kidneys look fine.  Moreover, her bladder is always full to different degrees.  Sometimes it’s a little full, other times it’s REALLY full.  So they really don’t have a good explanation for what’s happening other than she’s a demure thing who doesn’t like to pee.  As long as the kidneys continue to look okay, they are not too concerned about it. 

So, the plan hasn’t changed.  My job is to keep incubating.  The older she is when she’s born, the better she’ll do in the NICU.  Lung development is particularly important because placing the abdominal contents back into the body can place pressure on the lungs, and if the lungs aren’t mature she could have to be on a ventilator while she’s hooked up to her silo.  It would be great if we could avoid that.  I asked him when the ideal time to deliver me would be assuming I don’t go into labor and everything continues to be stable.  He said theoretically they would want to deliver me at 38 weeks, which is when the majority of babies reach full lung maturity (I thought it was 39 weeks, but he said it’s actually 38 for most babies).  That puts us at June 30, which just so happens to be my sister’s wedding date.  Imagine that!  My sister and I have an ongoing joke that the Littlest Warrior has it out for her Auntie.  She’s already taken the Matron of Honor out of the game, and now she’s like a hurricane honing in on the big day.  Apparently with the Littlest Warrior it’s go big or go home.  But don’t worry, sis!  Unless it’s an emergency, I’ll insist that they schedule the delivery for the next day.  And you’ll still have my permission to give her shit for this when she gets older (in fact, I encourage it).

What are the reasons why they might deliver me before June 30?

1. If my water breaks or I go into labor.
2. If the LW starts to show signs of distress on the fetal monitor.  Speaking of which, my perinatologist recommended that I go back to the 1-in-4-hour monitoring to give myself a break every once in a while.  He said the few variables she’s had (occasional, short decels) are normal for any baby.  The majority of the time she looks excellent.  He said he’s seen cases where he thinks continuous monitoring is needed and this is not one of them. 
3. If my AFI dips dangerously low (i.e., below 4.0). 
4. If no growth has occurred the next time they measure her, which will be in another 3 weeks.

There you have it.  I don’t have any ultrasounds for the next few days, so I hope my next posts will be a little more lighthearted.  And maybe they’ll even include a belly pic. :)

Growth Update

Today was a rough day.  I had an ultrasound to measure for growth and they estimated that the Littlest Warrior weighs 3.5 lbs.  The average baby at her gestational age weighs around 4.75 lbs.  The doctors have always warned us that she will be small, as growth restriction is one of the most common complications with gastroschisis.  Also, weight estimates with gastro babies are notoriously low and it’s very common for them to weigh more at birth than what was previously estimated.  That’s because one of the three inputs in the estimate is abdominal circumference, which is obviously smaller for gastro babies.  

Even though I know all this, I was still hoping for at least 4 lbs.  I think all the highs and lows, or the pregnancy hormones (or both) are starting to take their toll on me.  I was pretty upset and in tears after the ultrasound.  Then they put the Littlest Warrior on the monitor and she didn’t do as well as she usually does.  She had a couple of short decelerations and a long stretch when her heart rate was racing pretty fast without any variation.  The nurses and my doctor said that every baby has bad stretches, and that she’s not going to be perfect every time.  But they are keeping me on continuous monitoring until tomorrow to be cautious.  Fortunately she is back to her normal self now.  In my infinite medical wisdom, I’ve surmised that she was able to sense my stress and that made her a little stressed, too.  

Tomorrow we’ll meet with my perinatologist to see what he thinks about the growth restriction and whether that changes our course of action.  I should have more information after that.  For now I've got an America's Next Top Model finale to watch, which will hopefully chase these blues away!