Isabelle will be making her debut 7 weeks tomorrow and my anxiety grows as each day passes. It’s funny, when I sit down to write about what I feel I find myself spinning my wheels. Fact is, I feel like I have brought a terrible responsibility to everyone without thinking of the consequences. I wanted a third baby, I wanted to add to our family and made the gamble against factors like my age and we went for it. The cost is huge and so many people will be paying. It’s impossible not to feel guilty when you know that your two year old will have to suffer your absence because of the lengthy hospital stay. Your teenager will be worrying about you, the family, and what she can do to help instead of enjoying the last month of summer before school begins again. Parents on both sides will be coordinating schedules on who will be with kids and who will be there with us while we anxiously await her recovery. Family members will be praying and worrying about us and their new niece, and seeing what they can do to help with the kids.
But the cost I feel the worse about is the one I have forced upon my husband. We are in this situation because I wanted another child. He now has the daunting task of figuring out how to be a supportive husband, loving father while dealing with his own fears about what lies ahead for us. Long nights at the hospital, being away from our kids, watching our little baby suffer helplessly and being isolated once we come home are all charges brought on by having a CHD baby. Our first major expense has been the loss of not having a normal pregnancy and the most recent cost is not being able to go on vacation with our family to Narraganset beach this summer. A few months ago, we looked at this vacation as a great opportunity to have a fun vacation on the beach with our families. Yes, I would be the size of a small blue whale, but it would still be a great way for us to spend time together as a foursome for the last time. Today the reality is I cannot spare any of my vacation days because I have no idea how long Isabelle will need to be at the hospital recovering from her first open heart surgery. What if there are complications? What will I do if she doesn’t get cleared for daycare? How will I be able to not work and still carry the benefits for my family? All of our health insurance is through Eaton Vance, and I know that if I do take a leave of absence, I am still responsible for that bill.
I didn’t get very much sleep last night partly from being uncomfortable and the other caused by my guilty conscience. As much as I know intellectually that I am not responsible for Isabelle having HLHS, I can’t help but feel responsible for the price everyone around me is going to pay. I never intended on any of this happening. I just wanted to have the family of 5 that I have always wanted (and grew up with). It breaks my heart that Isabelle will be born with a broken one. It kills me to think what I have brought upon the rest of our family.
7 Weeks and Counting
hopeinaheartshape 
Elissa, my heart aches for you while I read this. The wait before you have your little one gets far too long, far too scary, and you have too much time to try to place blame. You did not cause this, not by wanting a child, not by anything you did, and that fact remains true for all of us who have babies with complicated hearts (and chromosomes). I know it’s hard to process, there must have been something that could have prevented it, but the fact is- there isn’t.
It happened, and it wasn’t because you aren’t as young as you once were, or because you sneaked a cup of coffee or sat in a warm bath. It just happened.
And your little ones, they will be so proud that you fought- that you let your little girl fight, and they will all bond over her, no matter how much time she is in the hospital or isn’t in the hospital. Not that it will be easy, but the most worthwhile journeys never are easy. The ones that shape us into who we are, that mold us into compassionate, loving, strong people… Those moments are usually the most difficult ones.
Ask for help. Don’t be afraid to do so. Talk, a lot. Vent, cry, laugh, pray… But keep on going through the emotions in a positive way. Do not place blame for why you are there, especially not on you.
As a heart mom, that question always lingers for all of us. The question if something we did or didn’t do caused our little ones to be born with such a burden. But- if you focus on that question, it will age you quickly and hurt your heart.
You are doing exactly the thing you ought to as her mother, carrying her and hoping for her. Think positive. I have a very good feeling about little Isabelle, and you should too. She is going to light up your world- for your whole family. You will see soon that the fight is worth it, maybe not during recovery, but in that first smile. The first babbles. The first rolling over attempts.
I am here if you ever need to talk. Stay strong, beautiful Mama.
Elissa,
I have never had the pleasure of meeting you. I’m a friend of Buck’s, or at least I was a long long time ago. I still consider him a friend, although I haven’t seen him in probably a dozen years.
I read this post through a re-post through facebook. I normally don’t write anything on facebook or anywhere else for that matter for a number of reasons. I felt compelled to just reach out to you and let you know that prayers and thoughts are coming to you from all sorts of places. From people you don’t even really know.
We are praying for you, your family and beautiful little Isabelle. Best wishes.