25 Weeks Pregnant :: and I now have excessive amniotic fluid

Well, as of today, I am officially 25 weeks pregnant!  Since my last update, we have had a fetal echocardiogram and another growth ultrasound {it is the first growth ultrasound since we found out about the enlarged ventricles in his brain and the arthrogryposis in his arms, so we were very anxious to see how things may have developed}.

I am happy to report that although there is some new {bad} news, there is also good news to report.

To start, the “results” of the fetal echocardiogram.  The reason I put quotes around the notion that the echo ended in actual results is because it didn’t; the test was inconclusive, for a good majority of it. 

Right away, before the cardiologist even started taking a look at the heart {which, by the way, this fetal echo was basically a super-sized ultrasound that was zoomed in on the heart}, they forewarned us of the limitations.  Obviously looking at the baby’s heart through my tummy wasn’t going to give the clearest picture and the test also depended on how Cletus was moving around.

Once they were done taking all the measurements they could {it took about an hour}, the pediatric cardiologist started things off by saying, “So this is what I am seeing.”  I almost threw up right then and there.  I figured she was about to tell us the worst.  Instead, she left us in a very grey area. 

Basically, in the parts of the heart that she could see, she did not see any major developmental issues or any large holes.  But, she could not see every piece of the heart that she needed to {the baby’s arms were in the way and he was wiggling around a lot}.  She also stated she could not definitely rule out that there weren’t medium or small holes present in the areas that she could see.  She cannot rule them out because, again, of the limitations of what is able to be seen while baby is still in utero.

Because we are at a much higher risk for the heart being impacted with a developmental issue {due to whatever is causing the enlarged ventricles in the brain and the arthrogryposis}, the doctor is recommending we have a full echocardiogram once Cletus is born.  She also offered to try another scan at 28 weeks, but followed that up by saying she will most likely not see anything new and even if she might see a small or medium sized hole, she wouldn’t diagnosis it with 100% certainty.  Basically, there wouldn’t be anything different to be done during the pregnancy {even if something MAY be seen} and he would still have a full echocardiogram once born {before they would do anything like surgery}.  So, we opted to just go with the full echo scan once born.

Fast forward to this week and the growth ultrasound. 

First, for the good news!  After taking a few measurements, it was determined that the ventricles in his brain did not get any larger over the past month.  They did not get smaller, but they did not enlarge.  They remained stable.  We will take it!

As far as the arthrogryposis goes, the only concerning thing that MAY now also be an issue is that it MAY have spread to his shoulders {whereas up to this point it was impacting his hands, wrists, and elbows, but before he could still move his limbs at the shoulders}.  The reason they have not officially confirmed the shoulders now being impacted is that it could have just been the particular day and the particular hour and Cletus was choosing not to move at the shoulders.  So, we will take a look at it next time and reassess.  Otherwise, he was still kicking away and able to move his legs, knees, and feet, so that was nice to see!

The bad {concerning} issue that was newly found at this ultrasound was that I have excessive amounts of amniotic fluid built up.  The perinatologist believes Cletus isn’t swallowing as much as he should be.  Because his bladder and stomach were full, they are still seeing that he is able to swallow, though, just not as quickly as he should be.  At this point, the guess for why he isn’t swallowing as much as he should is because he isn’t moving around as much as he would be if his arms weren’t locked into place.  But, we did see him open and close his mouth, and stick his tongue out at us, so we know at this point those joints are still functioning {and haven’t been taken over by the arthrogryposis}.  At this point, they are not as concerned with the fact that Cletus isn’t swallowing as much as he should be {although they will be concerned if he stops swallowing altogether} as they are about what the impact of having excess amniotic fluid means for the pregnancy itself.

Having too much amniotic fluid, especially when already present at the 24 week scan, can lead to many things.  I am now at a MUCH higher risk {more than I was already before with his conditions} for preterm labor.  Apparently, there is also a greater chance for things like preeclampsia {high blood pressure} or placenta previa {an issue that can impact the delivery of a baby}, or a placental tear during the pregnancy.  I am also a much higher risk of developing gestational diabetes.  But, at this point they are not sending me {officially} down the path of treatment for a patient with excessive amniotic fluid. 

Although I am now pre-registered at the hospital in case I do go into labor, they are going to wait two weeks and then check on the fluid levels again.  Once they have this comparative level, they will make a decision as to whether or not my care will be changing.  For instance, I may begin doing the NST tests right away {they are twice a week} rather than waiting until June.  I may be put on official {and strict} bed rest.  It all depends on how the scan looks in two weeks. 

So keep your fingers crossed that our little boy starts to chug some of that amniotic fluid down!

Aside from being much larger {and tighter} than I would have ever imagined at 25 weeks {however, I was told I am experiencing the impact of having excessive amniotic fluid present and that my mac and cheese consumption is not an issue}, the only other pregnancy specific “symptom” I am dealing with is a constant pain in my ribcage and upper back.  Things are stretching a little more quickly than they would have otherwise, so I am just supposed to keep them informed of the pain levels.

As far as emotions go…although the appointment left me more scared and sad {as they always seem to}, I feel like I bounced back a little more quickly this time.  The extra threat of preterm labor due to the excessive amniotic fluid really hit home for me and I realized I needed to buckle down and get my Invites by Jen orders done so that if Cletus does make his arrival early, I do not even need to worry about them. 

It is almost as if I wouldn’t let myself dwell on the news from the appointment {like I certainly have been in the past} and instead just kicked things into high-gear.  Do not get me wrong, I think about Cletus every minute of the day.  I wonder how he is doing, what each new day has brought for his growth, and if I am going to be able to be the strong mommy he will need me to be when he is born. 

While at the appointment, when we were talking about the potential of his shoulders now being locked into place, I asked what they might do for him once he is born {to at least get his hands and arms out of his face}.  Very casually {because to these specialists I am sure this isn’t as big of a deal since this is what they work with every day}, I was informed that one possibility would be to break his shoulders and arms at all the joints to reset them into a different position.  I immediately welled up at the thought of my less-than-one-day-old baby having the doctors break both of his arms.  So, I am constantly wondering, “Can I do this?  Will I be strong for Cletus or will I just crumble?”  I am just hoping and praying some sort of super mommy power kicks in.

One thing that I can say that I really appreciate in having my ultrasounds done at the Perinatal clinic is that they not only send us home with prints from the scan, but they also put them on a disc for us.  So, it makes it very easy for me to share them with you!  I will leave you with a few of the pictures from our 24w2d scan!

Profile Picture

{both Graham and I think he has the same profile from when I was a baby}

Legs

{although I LOVE getting to have the 3D looks at Cletus, since his fat isn’t fully developed yet, it still freaks me out a bit at how “lumpy” he looks….I was told that will get better!}

Face

One last quick item worth mentioning!  I know a lot of you have been keeping up with our infertility story, and now our pregnancy story, by relying on liking West Street Story’s Facebook page to see when a new post is up.  Unfortunately, Facebook has changed some things for folks like West Street Story and unless you like or comment constantly on my Facebook status updates {or unless I pay for them to be “advertised” to you}, you will not see that an update has been posted. 

Therefore, if you do not do so already, I highly suggest subscribing to West Street Story via email.  You will receive an email only when I upload a new post and it would never be more than one email per day {however, recently, I have only been posting once every couple weeks or so meaning this is all the more often you would receive an email from me}.

To subscribe via email {and never miss another post again!}, simply click on the button below.  Thanks!

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Comments

  1. says

    Jen, you will be strong enough! I can’t explain what happens or really even how, but the instant you become a mom you become “strong enough”. It is very reasonable to wonder if you could allow some of these treatments and it may be difficult but you can do it. I’d don’t recommend watching by any means if you don’t have to but the “mom gene” kicks in when you know your child needs you. Have a blessed week!
    Danita @O Taste And See recently posted…Homemade Chicken FingersMy Profile

  2. says

    I just wanted to let you know that I am praying for you today. One song that we sing when we need a boost is “His Strength is Perfect.” Even when we don’t think we can handle anything more, His strength is there to sustain us and carry us through..
    I would also like to ask permission to share your story with our ministries board members so that they can be praying as well.

    • says

      Hi Martha — Yes, of course you can share my story! Along with it being therapeutic for me to write, and meeting great people such as yourself, I hope to raise awareness for both Arthrogryposis and Hydrocephalus.

  3. says

    When you need to be strong as a mommy you can do it. I didn’t have any idea what life would be like with our kids because they were perfectly normal until one day around a year old for each of my kids the disease hit. Then there has been years of test, good days and bad days. Still with no answer to what this disease is that is affecting my kids.

    But you don’t have to take it all on at once. You just deal with each thing as it comes. God is good not to give you more than you can handle. I’ll be praying for your family.
    Shelly recently posted…Menu Plan Monday, May 12thMy Profile

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