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! 

AFI Update

I had another ultrasound today and my AFI was 7.1.  My last AFI was 7.4 so it’s basically the same as last time.  As long as it doesn’t dip below a 4.0 I’m a happy camper!  

The ultrasound technician also made an interesting observation that I hadn’t heard before: the Littlest Warrior has hair!  It’s hard to see how much, but it looks like we won’t be having a bald baby.  I’m so used to my ultrasounds being tense and loaded with serious information, so it was really nice to get some lighthearted news about what everyone REALLY cares about – what will this little lady look like?

The Littlest Warrior also did great on her monitoring sessions today.  I’ve included a picture of a strip from 6:30 am when she apparently decided it was a great time to act like a total maniac.  The nurses laugh now because they’re convinced we’re going to have our hands full with this little one.  It’s funny how she’s developed her own personality throughout this experience.  Being able to hear her heart beat and movements every day and see patterns in her behavior has made me feel so much closer to her.  It’s certainly given Erik a new connection with her that he didn’t have before.  I’m just so in awe of her strength and resilience given everything she has to deal with.  She truly is the Littlest Warrior in my mind, and every day I feel more and more confident that she’s going to beat this thing.

Strip from this morning

Tomorrow we have a full ultrasound to check on growth and the condition of the intestines.  Gastro babies are almost always small for their gestational age, so they follow growth very closely to make sure the baby isn’t dipping too far down on the growth charts.  Also, at this point in the pregnancy the intestines usually start to show some distension because they’ve been floating around in the amniotic fluid for so long (which irritates them).  So tomorrow’s ultrasound will be big and will give us a better idea of how she’s doing in there.

 

Finally, I wanted to let you know how touched and humbled we were to get such a beautiful outpouring of love and support yesterday after posting this blog!!!  I might not be able to reply to everyone individually, but please know that your prayers, positive mojo, and warm wishes mean SO much to us.  And I know the Littlest Warrior feels it, too.  We are all blessed to have you in our lives.

In the Hospital

On May 10 we went in for a routine ultrasound and found out that my amniotic fluid levels were low (AFI was 5.5).  Low AFI can happen with gastroschisis pregnancies, especially in the third trimester, and mine had been fluctuating for weeks despite drinking tons of water.  My perinatologist told us that I needed to be admitted to the hospital immediately.  We knew things could be serious when he made a point to tell us to go straight to the hospital and not to go home first.  The main concern with low amniotic fluid is that the baby could compress her cord or go into distress during contractions since there is less fluid around her to act as a cushion.  When I got to the hospital, they inserted an IV and hooked me up to a fetal heart rate monitor to see if the baby was showing any signs of distress.  I was 30 weeks pregnant, so the neonatologist from the NICU came in to talk to us about what to expect if she was born early.  Knowing that I could be wheeled into the OR at any moment was nerve-racking, to say the least!  But we did our best to stay calm and roll with the punches.

Fortunately, the Littlest Warrior didn’t seem to understand what all the fuss was about.  She was quite stable and showed no signs of distress.  In fact, the nurses and doctors kept commenting on how “beautiful” her monitoring strips were and what a happy, active baby she is.  It was SUCH a relief to see that she was doing so well!  The next day brought even better news – my AFI had gone up to 8.0.  However, the doctors wanted to see it at a 10 or a 12 for several days in a row before they felt comfortable sending me home.  Three days later I had another ultrasound and my AFI was back down, this time at 4.9 (less than it was when I was admitted to the hospital!)  That was a rough day… I think that’s when it really hit me that I could be here for a while.  After that they measured my AFI every 2-3 days and got 4.7, 5.5, 5.9, and most recently, 7.4.  So… I continue to be at the hospital and, barring a miracle, will most likely be here until the Little Warrior makes her grand debut into this world.  

But that’s okay.  Although I’m really homesick and getting a little stir-crazy, there’s no denying that it’s a relief to be here because I know that I’m in the best place I can be if anything goes awry.  I feel like I can let go, relax, and enjoy my new full time job as an Incubator.  Gastroschisis babies have a slightly increased risk of stillbirth, so this is truly the best place for the Littlest Warrior to be right now.  I feel like if I were at home, I would be constantly worrying and wondering what’s going on in there. 

The best news throughout all of this is that that Littlest Warrior continues to perform like a champ during her monitoring sessions.  There are two primary indicators of fetal well-being that they look for: variability and accelerations.  A fetus’ heart rate is much faster than ours, ranging from about 120-170 bpm, and is constantly going up and down.  This variability is an indicator of neurological function, so the more ups and downs the better.  They also look for accelerations which show that the baby’s heart is reacting to her movements.  So basically, you want the heart rate tracing line to be super squiggly with a lot of humps.  As you can see, the Littlest Warrior is quite the overachiever in both categories.  She is also very active, especially late at night.  Apparently that’s when it gets craaaaaaazy down in Club Uterus.  

Fetal monitoring strip with baby's heart rate on the left and contractions on the right.

Right now the doctors and nurses couldn’t be happier with her monitoring results.  Every day they comment on how happy she is and how she doesn’t act like a baby with low fluids.  Usually babies with low fluids don’t move around that much, have frequent decelerations (bpm < 100 for an extended period of time), and have constant heart rates with little variability.  These are the most common indicators of fetal distress.  As long as the Littlest Warrior keeps up the good behavior, they’ll continue to allow her to cook, which is THE #1 priority right now.  She will already have a lot to face when she’s born, and we would like to avoid adding prematurity issues to that list.  The doctors would really like to see me get to 34 weeks, which they said is golden as far as prematurity is concerned.  We’ll hit that milestone this Saturday!!  Then they’ll see how much farther they can get me before I go into labor or they notice something that would warrant delivering me.  The next big milestone will be 36 weeks, when the baby would no longer be considered premature.  At 39 weeks she will have reached full lung maturity, so it is unlikely that they will let me go farther than that.  So… we play the waiting game, knowing that each and every day she’s inside makes her a bigger, stronger Littlest Warrior.

Day 1 in hospital

Day 4 in hospital

My favorite hospital buddy, always by my side. :)

Welcome!

Welcome to my blog!  First off, thank you so much for taking the time to check us out and follow our journey!  I never really planned on starting a pregnancy or baby blog, but as it turns out, we’ve created a unique little snowflake whose story is already worth sharing.  Our baby (whose name is being kept under wraps until she’s born) has gastroschisis, a fairly rare birth defect that basically means that there is a hole in her belly and her intestines are sticking outside the hole.  I’ve posted more background on gastroschisis here.  The good news is that it’s very treatable, the survival rate is over 90%, and most gastro babies go on to live totally normal lives without any serious complications.  The not-so-good news is that our baby will be in the NICU for the first several weeks of her life.  She may have to undergo one or more surgeries if complications arise, and we won’t be able to hold her for probably a week or two.  Also, gastroschisis pregnancies can get a little rocky in the third trimester, which I have already begun to experience (more on this later).

The question that my husband and I get asked most often is how we are coping with all of this.  And honestly, we’re doing okay!  We’ve had some time to adjust to the news and prepare for what’s ahead.  I won’t lie – it can be easy to fall into a vicious cycle of “Why me?”  When that happens, I try to remember that nobody gets through life without experiencing hardships.  This just happens to be one of ours.  And in the grand scheme of things, it could be so much worse.  We have some extra hurdles to get through before we make it to the finish line, and they’ll be big, difficult hurdles, but we’ll get there.  And after this is all over, we’ll have a happy, healthy Little Warrior to bring home whose strength and courage will amaze and inspire us! 

This blog will provide updates on my pregnancy and hospital stay, the Littlest Warrior’s birth and progress while she’s in the NICU, and the Littlest Warrior’s life at home.  I also hope to provide support and information to other parents with gastroschisis babies or babies facing similar challenges.  Please feel free to leave comments and questions and I will try to answer them the best I can.  Enjoy!

The Littlest Warrior, Week 20. Blissful smile or devilish grin? Only time will tell...