It Could Be Worse

Originally written December 20, 2017:

“It could be worse.”

Of course it could be worse.  It could also be fucking better.  These words spoken by the physician who read us the results of our 18- week anatomy scan could not have been less soothing.

As we sat in that tiny room with a large ultrasound machine and a screen mounted to the wall which we had be staring at for the past 30 minutes, myself now sitting up on the edge of the exam table, Ginge in the chair against the wall, we had just received news that our baby has a cleft lip and possible palate.  We walked into that room excited.  We were joking about the obnoxious sound of my new clogs on the floor, and the ridiculous way I was walking in them.  We were so anxious to see our baby’s face for the first time.  “It’s going to look like a real human today!”  We joked about how well behaved it was already, giving us a perfect view of his/her heart.  It wasn’t until the very end of the appointment that the ultrasound tech said, “Since I told you I’d let you know if I saw anything, I just want you to know I have found something I’m concerned about.  It looks like theres a cleft lip on the right side of baby’s face.  Do you know what a cleft lip is?”

Of course I knew what a cleft lip was.  We’ve all seen the late night commercials of the children in third-world countries who need surgery to fix their cleft lip/palate.  I’ve even looked into volunteering with Operation Smile in the past.  I knew what cleft lip looked like.  Ginge immediately got on his phone to start googling.  I wished he wouldn’t.  The tech said “the doctor will be in shortly to go over the results,” and walked out.

The tears started streaming.  I didn’t want them to.  I was trying to hold it together until we left, keep a clear head to be able to process what the doctor said.  He entered, a few minutes later- a tall jolly looking man with a white beard.  I was hoping and praying the words out of his mouth would be that the tech is an idiot and it was just a shadow on the ultrasound. All is good!  Instead, in an upbeat tone, he repeated that our baby has a cleft on the right side of its lip, we couldn’t confirm palate involvement yet, it was too hard to see on the ultrasound at this point, and he proceeded to discuss genetic counseling, amniocentesis, and all of the other chromosomal abnormalities that could come along with cleft lip.  He discussed consultations we will be setting up with a surgical team at Rady Children’s Hospital, as well as appointments we will need to make with ENTs and other specialists.  He told us not to google.  He said we would only see and hear about worst case scenarios if we went down that rabbit hole.  He looked at my pathetic face, told me to cry, get it out of the way, and then move on, because “it could be worse.”

Of course it could be worse.  There could be so many worse diagnoses we could have received.  I am, and was, completely aware of that.  Any logical person could process the fact that it could be worse.  But when it’s your baby, and someone has just blindsided you with information that you weren’t expecting, someone is telling you that your unborn child needs to get on a surgical schedule and set up appointments with specialists to do further testing, no, at that particular moment in time, it couldn’t be worse.  This is my worse.

We walked out of the office into the hallway of the medical building.  I told Ginge I needed to use the restroom.  I sat in the stall and cried… not just streaming tears, but ugly loud crying.  Gasping crying.  The kind that sounds like an animal’s dying.  I washed my hands, wiped my face and walked out.  He hugged me and told me it’s going to be okay.

It will be okay.  We have a journey ahead of us that looks a little bit different from the journey we thought we had ahead of us a couple of days ago.  I’m not going to lie, I’m completely terrified.  Even more terrified than I was of bringing a baby without birth defects into this crazy world.  I cry when I think about bullying.  I cry thinking my child might speak differently or look differently and knowing there’s nothing I can do to protect him/her from the cruel kids, the social media bullying.  But I know this baby already has a huge support team ready to go to bat for him/her, and I appreciate that so so much.

I know I need to be strong and positive. I need to get the crying out of the way and move forward.  I can do this.  We can do this.  We will do this.  It definitely could be worse.

 


Written February 22, 2018:

I realize my last post was dark, and sad and depressing.  I struggled with whether I wanted to share those emotions publicly,  which is why I didn’t publish it originally.  I felt the need to write at the time though, so I did.  And now I feel like it’s okay to share.  We all go through these kinds of moments at some time or another, right?

The past few months have been an emotional whirlwind.  After I wrote the above post I gave myself exactly two more days to cry.  I decided on a Wednesday that my pity party would be over by Friday, because it was completely unproductive.

My best friends suggested I join a Cleft Support Group for moms on Facebook, and researched and sent me some groups.  I joined one, and lived on the page for a while, reading everyone’s accounts of their pregnancies, receiving the news, giving birth to their cleft babies, and everything to follow.  I found support already in that the feelings I was feeling surrounding receiving the initial news were normal.  The feelings of guilt, “Did I do this??” to the feeling of being letdown, and then the feeling of guilt again for feeling letdown.  The feeling of straight up fear of the unknown… these were all feelings that thousands of other moms also felt.  I’m not the only person on earth who will be giving birth to a baby with a cleft.  This is so much more common than I originally thought.  Sometimes just not feeling alone, like you’re the only one on an island that has ever gone through something, is enough to feel a bit of a sense of relief.

Telling our families and close friends was hard.  I cried every time I told someone… but their responses, their unwavering support and words of encouragement were so amazing.  I cry now as I type this.  Not because I am sad, but because the love is just so overwhelming (and my hormones are raging… obvi).

I’ve come to realize that this is a journey I want to share.  It’s not something I feel the need to hide, or keep to myself.  One in 700 babies is born cleft-affected, which was surprising to me.  It’s not as rare as I would have thought, but when we received the diagnosis I literally knew nothing about it.  As you can probably guess, I’m now a self-proclaimed expert (thanks, World Wide Web).

The excitement of the pregnancy and the baby to come has taken over more of our thoughts than the medical issues we will face.  My sister opened up our sealed gender results for us shortly after the anatomy scan appointment, decorated our dog, Oliver in color-appropriate streamers, and we found out that we be having a boy.  My two-year-old niece, Tess, decided to nickname him Tacos, which really, is the most perfect name I could imagine, and over the past couple of months has become so natural for us, maybe we will actually just put “Tacos” on the birth certificate and call it a day.

We have had follow-up appointments since the first scan which included a fetal echo-cardiogram and a more in-depth ultrasound at 22 weeks.  Since a lot of cleft-affected babies have related syndromes that could cause heart defects, we were advised that a closer look at the heart would be smart.  Thankfully, the heart looked great, so we are praying we are dealing with “only” the cleft.  We also found out the palate is most likely affected, but we won’t be able to tell how far back the cleft goes until the baby is born.  This week we had our first meeting with a physician at Rady Children’s Hospital.  We met with a geneticist, who was just wonderful.  She did her research on all of our medical records, and gave us an in-depth analysis of our journey to follow.  She told us we will be having a long-term relationship, because contrary to what most (including myself) believe, fixing a cleft is not a one-time deal.  Baby Tacos will have his first surgery for lip repair at 3-4 months, followed by palate repair at 9-12 months.  He will likely have another revision surgery before kindergarten, followed by a bone graft before his adult teeth come in.  He will have speech therapy services, being the flap in the palate causes speech problems, and will see an orthodontist from as early as a few days old to begin closing the gap in the gums and lips to make surgical repair easier.  He will likely have more surgeries up until his teenage years, and he has his “adult face,” as his face continues to grow and change.

It’s a lot.  It’s definitely a lot.  But we feel so much more equipped with knowledge and support now, and we feel so confident with the medical team at Rady.  As I am naturally more of the control freak and worry wart in the relationship, Ginge is the complete opposite and has taken the “everything will be ok” role.  This has also transitioned into the “we have plenty of time” role when it comes to renovating Tacos’ bedroom and building a crib, but I have not a doubt in my mind that he is right on both accounts.  Everything will be okay, and the room will be done on time (or else heads will roll).

We have now entered the third trimester and holy cannoli this baby is coming soon.  I’m aware that in 8 weeks when I can’t stand up from a seated position anymore, it probably won’t be soon enough, but at this point, it feels like DANG, this pregnancy is flying!  My mom is throwing a shower in NY next weekend to celebrate Baby Tacos, and we are so excited.

I have to say our outlook now is so bright and contrasting to my feelings a couple of months ago.  We will have a beautiful baby boy, and despite his minor challenges along the way, I’m confident he will bring us so much joy, and I’m hoping and praying we will figure out how to raise a baby along the way… cuz currently, I have no freakin’ clue!  Parenting advice will be accepted on a case-by-case basis.  😉

Thank you for listening to my rambling.  There will be plenty more where this came from.

xoxo

Gossip Girl

 

 

 

 

 

 

 

 

4 Comments (+add yours?)

  1. Momma
    Feb 22, 2018 @ 16:53:17

    You made me cry again. But that was brief, and now I’m smiling, thinking of the adorable tommy hilfger outfit I bought for my precious little “Tacos” today.

    Like

    Reply

  2. thegigglygiraffe
    Feb 22, 2018 @ 17:10:49

    Dude! I love seeing your attitude change between the 2 posts. Congrats on that! My parenting advice? That positive attitude will make parenting so much easier and more fun.

    Also, my eldest has a friend with a cleft. She’s 16 and super self conscious about it. Between the 1st time I met her and the last time I saw her, there’s a huge difference! You can barely tell at this point. She’s a beautiful young girl.

    There IS hope. No matter how scary it is now and will be every time Tacos goes in for surgery, you and your Ginge have this on lock!

    Keep smiling! Keep being silly! Don’t forget to stick your tongue out at Tacos and tickle his toes, make him giggle. His smile will still steal your heart. 💚

    Liked by 1 person

    Reply

  3. Janet Batley
    Feb 23, 2018 @ 19:51:46

    Your baby boy will be beautiful and will be loved

    Liked by 1 person

    Reply

  4. Maureen Kenny
    Feb 27, 2018 @ 06:18:00

    You and Ginge have got this. You are fantastic couple and have wonderful and loving family and friends to love and support you and “ Tacos”! I love you guys. I can’t wait to see you and your beautiful baby boy.💕☺️

    Liked by 1 person

    Reply

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