Above the fray

I’m so glad I started this little blog.  Brian and I have gotten so much encouragement from friends and are grateful.  The past few days we have been up and down about it.  We talk about the likely hood that our son will be fine, however can’t ignore the situation.  Whenever I say it out loud it sounds so alarming.. in fact I don’t even want to type it out because I hate dwelling on it, but then come back down to earth thinking about probability regarding the situation. 

When we decided to have a 3^rd baby, our doctor ran us through the ringer drawing graphs, writing out statistics and going over the possibilities of chromosomal abnormalities because of my age, so I feel like this put salt in an already fearful wound.  The two mom’s I know that have babies with Down syndrome are amazing and have offered support and even to come talk to us if we want.  They for sure know about the markers on infants to look for and would more than anyone would be able to educate us, give us a briefing of how to set our expectations and how to love our son if that would be the case.  It’s the waiting part that is hard.   

Last night when Brian and I were chatting a bit, we talked about the delivery for a few minutes.  I found myself fighting back the tears when I asked him to tell me as soon as he laid eyes on him if Liam is ok.  I know they might not be able to tell immediately, however I am anxious to hear him cry and for Brian to tell me he looks good.  I will not be able to hold him for at least the first 20-25 minutes or so because I have to have a c-section.  It will be a very long 20 minutes of life.

I think after we get through the initial grief of a squeaky clean pregnancy, and work through the fear of the “what if’s”, we will be able to go on as usual till he comes.  I still have 19 more weeks to go, so my guess is it will be all over the place.  Today when I went shopping with the boys, one of the shopping clerks asked me if I was having another boy and I said yes with a smile.  She then asked if we were hoping for a girl and I told her we didn’t care either way to which she replied, “it doesn’t matter as long as the baby is healthy..”  This kind woman has no idea who I am or where I am in my life, but was trying to make me feel validated in that brief moment of conversation.. but I waited till I got in the car with my boys to tear up.  How much I enjoy this pregnancy, my life, or find joy in the next 4 months (or longer), really depend on me.  I think so many people don’t know what to say, although the emails and phone calls we have received have been amazing.  But I am reminded every minute of my life of my son because of the physical evidence.  He moves and constantly reminds me he is there.  Not only that, but I am BIG!  It is very obvious that I am pregnant and most people are excited to share that.  I hate putting on a show or being fake, but after my short shopping excursion today, I have quickly realized that as much as a simple innocent comment my hurt, I don’t want to show animosity toward these people.  I need to rise above the fray in moments that I don’t even want to and limit my transparency to when it is appropriate… and I can’t believe I’m saying that being the most raw, “in your face” kind of person I know.  I don’t think I will always succeed, however I believe I can grow to find a steady, at least when I need to. 

My son has two cysts on his brain which could mean everything or nothing.  I hate this and will be happy when it is over. 

One of our good friend (who is a physician) pointed out yesterday that even though they are obligated, it stinks that the doctor told us because it is non value added information.  We had already communicated that we were not interested in doing any type of genetic testing or abortion, so the fact that they told us about this really gave unnecessary worry.  I’m not by any means discrediting our doctor because I know she is good and was doing what was obligated of her, but because we are not doing anything to confirm either way if there is a genetic birth defect with baby William, it’s really compromised the situation for us…ugh

So this is all I have for today.  I know there are people who have gone through much worse, and for that I am so sorry.  This experience is definitely educational in how I can better love others in the future.  Although every person is different with various emotional needs and expectations, this type of grief, worry and pain is in a category of its own. 

Thank you again for letting me vent my fears, grief and frustration.  This is also a place where my husband, Brian might choose to do the same.  Either way we will keep you posted on our little boys life and progress.

diagnosis

Because I am desperate to talk about this, however need to use discretion as we are not ready to let the world know, I have decided to start a private blog regarding the news of our son Liam.  I know many people who are super private about their lives; however I work through pain, grief, frustration, joy etc through community. I do not want this to be posted on any open forum and will not be posting this on facebook.  If you are interested in reading as I post about our son, our fears, concerns etc, let me know and I send you links as I write.

For those we haven’t shared, yesterday Brian and I had our anatomy ultrasound for our unborn son due on August 8^th.  I’ve said it before but no matter how many kids we have, or how many times we see them before they enter the world, it never gets old.  I was wiping tears away as we watched him squirm around, move his little fingers and toes, drink, stretch his little legs out and just kept thinking how much I couldn’t wait to hold him.  The ultrasound tech said he was in the 73 percentile of his height and weight and he was at 21 weeks of development (I was 19 weeks 5 days).  He is big and he feels like it compared to my other two boys.

From the naked eye, even though I’ve done this 3 times and by no means am a pro, everything looked fine.  The tech took careful pictures of his hands, feet, kidneys, brain etc.. but it was nothing out of the ordinary it seemed.

When the doctor looked at the report, I think she might as well shot me when she told us our baby has two choroid plexus cysts on his brain.  I think when I heard the words “cysts on brain”, I immediately shut down.  She could have told me at that point that we won the jack pot and I don’t think I would have heard her. 

Brian at one point contemplated not going to this ultrasound because we had already gone to one and we have another we will be going with my in laws Bill and Cher, so he was trying to think of ways to save vacation for when Liam is born.  I told him I wanted him to go since it was a clinical ultrasound and just in case, having him there would be important.  I’m so glad he did.

Thankfully, Brian was there because I literally couldn’t even think strait enough to ask a question I was thinking of without bursting into tears.  I’m sure she thought she was talking to a wall at that point, but my husband is all about data, and he was able to clearly absorb what she was saying.

After a few minutes in the car to panic, we called my girlfriend who is a ER doctor at Children’s Hospital for feedback.  I had everything the doctor said completely jumbled, so Brian did the talking to her to get her feedback on the severity of what was going on. 

It turns out these cysts are more common than we would have thought.  Many babies have them between 16-32 weeks of pregnancy and usually resolve themselves before birth.  Liam did not have any spinal fluid buildup on his brain and looking back, our doctor seemed very calm about the situation. So much so that she didn’t even order a level 2 ultrasound but just scheduled me out for an ultrasound in 4 weeks to check the progress.  Our doctor friend pointed out that the latest a woman can get an abortion in the state of OH is 24 weeks and incidentally, my next ultrasound is scheduled at 24 weeks gestation.  If the doctor really thought in the back of her mind that Liam was at great risk, she would have immediately ordered a number of tests to check on his condition, chromosome abnormalities etc so to give us, by law, the option of terminating Liam’s life prior to the cutoff date.  To those who are pro abortion, that might sound great, but we disagree. Regardless of what the doctor would have said, we would not have chosen to end Liam’s life prematurely.  The good thing about hearing that was the reassurance that if the doctor is concerned about saving her tail, and really thought I needed the option of abortion, she would have acted, but she didn’t.

So this left us with very little information about what a CPC is, but a reassurance from our doctor friend that she thinks he is going to be ok. 

So we chose to read some literature to understand what this meant for Liam, us, our family etc. and this is what we read.

A large majority of the time, babies with CPC are born totally fine.  They are healthy and lead normal lives.  There are two chromosomal conditions however that are indicative to having CPC as a symptom. 

#1- Down syndrome.  Because we choose not to do amniocentesis at the beginning of the pregnancy, we will not know for sure, just like most women, if Liam has down syndrome anyway, regardless of this new information.  Does this cause me to worry?  Yes.  Please understand that I know people who have children/siblings with down syndrome and I don’t know firsthand, but hear how wonderful these children are.  But the reality is having a child with special needs would require completely reconsidering our life expectations.  It’s something we would have to grieve, yet find a tremendous amount of joy that God would give us such a gift as our little boy.  It would be challenging and we would have to learn quickly as much as we could since we personally haven’t been exposed to that type of special need.  But we would adore him and he would be our son.  And.. we would need so much support and love.

#2 Trisomy 18 (T18) or Edwards Syndrome.  This is very alarming.  I will start by saying that as much as I dread it, and it will linger in the back of my mind till I see Liam, he had no other markers or indicators of this abnormality.  To give a direct quote from Wikapedia, “The syndrome has a very low rate of survival, resulting from heart abnormalities, kidney malformations, and other internal organ disorders.”  We also read that that if there is only one marker on a fetus, it does not mean the baby has T18, but usually there are 2 or more that would indicate Edwards Syndrome.  Thankfully, Liam only has the cysts on his brain, and although the doctor said his abdomen is larger and a little out of proportion to his body, she was not concerned.   After Brian and I read this, we remembered how thorough the tech was about checking these markers after she saw Liam’s brain.  His hands, feet, kidneys, heart etc all looked normal.  We really have no reason to believe Liam has T18, but since he has one of the markers, we wanted to make sure we adequately researched the abnormality.

Both of these abnormalities generally come with a woman over the age of 35.  Incidentally, Liam is scheduled to be born on my 35^th birthday.  When we decided to grow our family once more, I knew there was risk of aging abnormalities.  I pray that Liam does not suffer any consequences of our decision prior to even entering the world.  In a way, I kind of feel like this is my fault.. and it's really hard to wrap my mind around.

When I was sitting at the kitchen table yesterday looking at baby Williams name on our playroom wall, I contemplated through tears if it was too audacious to write it and celebrate his little life prior to his birth.  But he is still our son even if he can’t sustain his own life at this point, and he is not disposable to us.  No matter what happens, we want to celebrate his life as we have our other children. 

So today I feel like a roller coaster.  Rationally and statistically, I know the odds are good that he will be born fine, but if you are a mother, I know you understand a mothers concern and love for her children can be debilitating.  I feel kind like I don’t even want to be around people who don’t know because then I know in the back of my mind if I talk anything about Liam, I will want to burst into tears with fear. 

The day we go into the hospital and I deliver our son will be the most nerve racking of all three births.  I need to see him and hold him to know he is ok.  I pray over the next 4 months we can relax and find joy in our lives.  I am aware of what is biblical truth, however I am human and my guess is Brian and I will have moments of struggle.  We have two healthy boys that we love so much and are a gift.  Regardless, Liam will be just as much of a gift. 

Please pray and support for our family as we continue this journey.