Monday, December 26, 2016

That would never happen to me...

In July 2016, we found out that we were having a third child.  I have to admit that even though this pregnancy was not exactly an accident, I was a bit terrified to be a mama to three children.  I didn't think I could handle it and still be the mama I wanted to be.  I spent months fretting over this.  In addition, the pregnancy was much harder than my other two with much more nausea and exhaustion than I had expected.

Around Thanksgiving, I started to make peace with whatever was to be and began to start seeing my life as it would soon be and imagining all the wonderful things that come with a new baby in our home.  I was starting to get excited.  We had told our boys early on which then meant the whole world would soon know as well.  They were thrilled and have spent months talking to and arguing over who will hold the baby most.

On December 6th, we went for our 20 week ultrasound and decided not to find out the sex of the baby once again, but simply to see that it was healthy and thriving.  We really hadn't considered that it would be any different.  We had denied the early genetic testing even though I was 39 because we figured that whatever they could possibly tell us would not make a difference to whether we kept the child or not.

As soon as the doctor put the monitor on my belly, he began to see things that looked not right... Cysts on the brain, a cleft lip, abnormal hands, a hole in the heart, too much amniotic fluid, and more. Josh and I sat there in shock.  I think Josh started crying, but I sat there with my hand over my mouth thinking, "but the baby is ok, this cannot happen to me".  It lasted all of about 3 minutes and then, the doctor said, "this pregnancy is not compatible with life, I am sorry.  I need to send you immediately for a genetic bloodtest, but I believe your baby has something called Trisomy 18, a chromosomal abnormality".  Then he left the room.

We went for the bloodtest and then to see our midwife who we called right after the ultrasound.  Our midwife sat with us and explained that over the next few weeks we would need to decide between ending the pregnancy or seeing what nature had in store for this baby.  We found out that many of these babies die in utero and many during birth, but that if the baby is born alive, it only has a 5% chance of making it to its first birthday.  We later found out that the doctor thinks it will make it to term because I am 25 weeks along and he thinks we will have only a few hours with this baby.
The blood test results came back after four excruciating days and confirmed Trisomy 18, also known as Edwards syndrome and told us we were having a boy.

I found out that the three day procedure for ending the pregnancy was at a "termination center" in LA that began with ending the heartbeat and concluded with a D and C.  It was extremely expensive, not covered by insurance, possibly a place that could be protested, and simply felt like something I could not do.  I felt relieved in a way to get this information because it meant that I no longer had to make a decision, the decision was now clear.  I also felt scared about what the future would hold.
If this baby dies in utero, I will need to go to the hospital and give birth.  If the baby goes full term, we have very little idea of what to expect of its condition as each of these babies present differently. We do know it will likely have trouble moving and breathing as the biochemistry is mixed up and the brain cannot tell the body what to do to survive.  We are not certain if it will be able to eat given its possible difficulty swallowing and the cleft lip. Most of these babies seem to have breathing apnea.

We told our boys and that was very difficult.  I felt like part of their innocence died that day and I know I broke their hearts.

And so for now we wait.  I have 3.5 months until my due date.  I don't know what to expect or how to handle many of the decisions we will likely have to make.  I don't know how to help my boys through this or how much to include them in the birth and death of our child.  I am just taking each situation as it comes.  I am posting about it as much as possible because having individual conversations about it is too much when it has to happen over and over again.  So if I dont want to talk about it, please understand.

I do know that I have reached a place of peace with what is and am trying to take one day/one decision at a time (not something my personality lends itself to very easily).  The peace has come with three thoughts I repeat to myself often:
1. We likely have time before we have to handle anything so being miserable for those months seems silly.  Go back to your beautiful life and live it.  What happens in the future we will handle when it comes.
2. We have two beautiful, healthy children who need us and we are so beyond fortunate to be their parents.
3. Whatever does happen in the future and however horrible it may seem now and then will only make us stronger, wiser souls.  And quite possibly there will be joy along with it.  For you can't have one without the other or so I am learning.

Our current challenge which might seem not so dificult in the face of this challenging time, is to name this baby.  Let me assure you that for Josh and I to name a third boy may actually prove impossible.  The first two times was pretty much like pulling my hairs out one by one.
I would really like to name him now for he is my child and has already taught me so much about myself.  We have no idea how long he will be with us so giving him a name as soon as possible is my goal.

We will make updates on the baby's situation here on my blog if you are interested in following his story.

Thank you to all our friends and family who have supported us so far, some calling more than once a day to check on us.  You remind us how lucky we are, how much we are loved and as a very important person my life often says, you remind us "how wonderfully messy life can be".
This is our little angel baby...