22 Weeks Pregnant :: and if miscarriages are an emotional roller coaster ride, then this is a roller coaster ride when the lap bar isn’t secured

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{photo via OnPoint USA’s Facebook page}

I have now made a couple references to the emotional roller coaster ride that you can experience when dealing with multiple pregnancy losses.  And, over the past couple of weeks plenty of medical professionals have told us that the remainder of this pregnancy will be an emotional roller coaster ride.  What they do not tell you is that this ride is going to be much worse.  At least before, when we were on the peaks of the “ride”, we were feeling good and that we may be in the clear.  This time it feels like we are on a roller coaster ride where the lap bar is secured only halfway down……so that even when we are at the top of the hill, moments before plunging rapidly down the next twist or turn, there is still a great bit of unknown, anxiety, and fear {will I survive this ride?}.

Right now I feel like we are sitting at the top of the highest peak on our roller coaster and although things are calm for the moment, I feel like I am grasping and tugging at that lap bar hoping to get a little more security before the next stomach turning drop.

Although Graham and I have received some new information since my last post, it is not quite the information we would have liked to have.  Unfortunately, the information we would have liked requires a magic eight ball and a fortune teller……we are out of both.  We have always known we were not going to get a clear understanding of what will transpire over the rest of this pregnancy, and whether or not Cletus will be further plagued with his symptoms, or if things will remain constant {ie, not quite so bad} for him.   Knowing you are not going to get any answers doesn’t make this unknown and uncertainty any easier, though.

Two things {well, actually three things} we were able to rule out were the Trisomy 13 and Trisomy 18 chromosome abnormalities.  After that whirlwind of a day where we learned something was wrong with Cletus’s development, I opted to do what was called an NIPT maternal blood test.  I decided to do this test at 20 weeks rather than an amnio due to the miscarriage risk involved with the amnio procedure.  I have had enough miscarriages that were out of my control, so I couldn’t get passed the thought of actually causing one myself, simply for a test that might not even give us any explanation as to why all this has happened to Cletus.

Although the NIPT test is not diagnostic {like an amnio}, it is 90-99% certain.  That is enough validation for me and Graham to take Trisomy 13 and Trisomy 18 off our plates.  And, the test actually ruled out Down’s Syndrome for us as well.  Down’s wasn’t really all that concerning {given all the many other possibilities that could be causing Cletus’s symptoms}, but given that it also came back negative, we are still left to wonder what caused the development of enlarged ventricles and arthrogryposis for our little one.

Let me tell you, though.  When we were waiting on the test results, life was just one big blur {life it still not clear, but each day that passes seems to clear things up just a little}.  Not only did Graham and I have to wrap our minds around the possibility of Cletus’s symptoms getting worse {and there also being an underlying condition that may cause additional problems on top of what we are already seeing}, we also had to wonder how we would handle the news of Trisomy 13 or Trisomy 18 being present.  I am not going to go into detail on what those abnormalities mean exactly, especially since they are no longer relevant to our story {and I have cried and thought about them more in my life now than I would have ever cared to}, but Graham and I would have been faced with fatal news had either one of those abnormalities been present.

This is why I now feel like we are just sitting, and waiting, at the top of the highest hill on this emotional roller coaster ride.  The air is calm, but I am still quickly trying to better secure myself for what may be coming.  We ruled out the two fatal abnormalities and until the next growth ultrasound, we have to just believe {and hope and pray} that Cletus’s symptoms are not getting worse.

Regardless, even if a worsening progression is not apparent, I will be at the doctor quite a bit over the next 16-17 weeks.  I printed out the list of appointments that were sent to me from the perinatal clinic in Madison and it was six pages long {and this assumes things do not get worse}!  If symptoms are appearing to get worse, it may prompt even more appointments later on.  And I cannot forget the fact that I will still have almost weekly appointments with my OB here in Beaver Dam……we are doing shared care between her and the Perinatologists in Madison {which I want}, so she still needs to check on Cletus just as she would without the ventricle and arthro issues.

For this week, we have a fetal echocardiogram scheduled.  The doctors do not necessarily think anything is wrong with his heart, but they want to check on it given there are other conditions present…..although things looked okay on the ultrasound {as far as his heart goes}, there is a greater risk for there being problems with the heart when other conditions are present.  So, they just want to rule that out.  Then, the following week {I will be just over 24 weeks along}, we have our next growth ultrasound.  I believe this appointment will be the one that gives us an indication if we are beginning to fall rapidly down the next hill on our ride or that {for the time being}, I can continue to try and get a little more secured in my seat.

Until then, Graham and I are going to continue to prepare for Cletus just as we would have before.  The difference now is that we also have to consider the special needs care that may be required.  For instance, {today while we went registry shopping at Babies R Us and online at Amazon and Etsy….it was an exhausting but exciting day!} when we are choosing a car seat, we have to make sure it would be the best option for a baby that just {potentially} had brain/head surgery.  Or, when we pick out onesies or sleepers, we will most likely only get those that snap up {rather than go over his head} as, again, we may not be able to pull a shirt over his noggin….and we have to consider his arms may not fit through sleeves.  Or, when we consider the toys to have on hand, we need to consider the fact that Cletus will probably not be able to take advantage of anything that requires moving his arms or gripping with his hands {at least not right away, in hopes that things do get better}, so we will focus on toys that utilize his legs and kicking for now.  And we have to try and plan all of this with knowing we are going to start Cletus out in the NICU rather than being able to bring him home right away….we just do not know how long the stint in NICU will be at this point.

On a more positive {light-hearted, joking note}, Cletus did pull off his first April fools prank!  It gave us one small moment of laughter and a reminder that Cletus is still in there growing, kicking away, and is his father’s son {I am terrible at pulling off pranks or jokes}.  We have been very clear that we will not be revealing Cletus’s actual name until he is born.  Hence the reason for his nickname, Cletus the Fetus.  However, Graham came to me with the idea to send a text on April 1st telling our family members that we could send text messages to {because there was no way we could pull this off with phone calls} that they were getting a sneak peek of the name.  We decided to tell them we were going to name our son Gravel Lee…..get it?  Gravel-lee….Gravely {this road is very Gravely}.  We said it represented the long, tough road we have been on.  We fooled ALMOST everyone {Graham’s mom and our sister-in-law didn’t bite}.  But, everyone was very polite {and seemingly excited for us} about the name.  “What a tough name” was a common response.  I felt terrible, though, as soon as we sent the text.  It had to come from my phone because it would be more my style {than Graham’s} to send something like our baby’s name in a text.  I made him send {and respond to} the follow-up message saying “April Fools” as I began to feel so guilty for lying!

So, if you hear us refer to Cletus as Gravel, now you know why.  But, I just hope that everyone likes his REAL name as much as they seem to like his nicknames!

As far as the pregnancy itself is going….right where they should be.  I feel Cletus kicking every day and Graham can now feel his kicks as well {each time Graham does I feel such joy}!  However, I am finding more and more than I am forgetting that I am actually pregnant.  I am so concerned and wrapped up in making sure things will be the best they can be for Cletus, I forget that I need to slow down, rest at points, drink lots of water, and make sure to continue to use stretch mark cream!  It is so weird how the pregnancy itself was so over encompassing and now those thoughts {and making sure I am doing everything perfectly} have somewhat fallen by the way side.  My mind is on Cletus!

PS (Thank you SO MUCH to everyone that sent us messages over the past couple of weeks.  We read each and every one of them and they all provided some level of comfort and encouragement during some of our harder days.)

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Comments

  1. says

    I want to write and thank you for your blog. My husband and I have three children with Arthrogryposis. They are a blessing to our lives every day. As a result, we started a ministry working with families with special needs children. We were told that our oldest, Ruby, would never walk or function in normal society. We knew that God was in control and that He would never give us more than we could handle. He has never forsaken us. Times haven’t always been easy, but we never doubted that He is with us each step of the way. If you are interested, on our website is a link to a video of Ruby playing the piano in front of 2500 people when she was only 13 years old. Don’t believe all the negative things that the doctors tell you, trust that the Lord knows what is best and that He has a special blessing in store for you through this trial.

    • says

      Thank you so much for your note, Martha! Please stay in touch. It is stories like yours that continue to give me and my husband hope.

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