OB Appointment tomorrow

And then there were six. Weeks, that is. Six weeks until the 39th week or D-Day. My scheduled C section is for August 8th.  As the days comes closer I am finding that sleep is getting more and more difficult to come by. Between the heat, inability to find any position that is comfortable and having to get up to pee, I find myself lying in bed, staring up at the ceiling while wondering what lies in store for us. Some aspects of this hit me harder than others. It changes frequently. Last night it was the difference this pregnancy is from the previous ones.

My first pregnancy was full of wonder , excitement and lots of swelling. My feet became bread loaves and I waddled around Rutland indulging craving after craving. Every little movement brought a smile to my face, and we looked forward to the impending October 21st arrival. She arrived on October 17th at 7:45 am after a 7 hour labor sans pain medications. I am very proud of how I handled her birth, because it showed me a strength I never knew existed and it was an experience I am in awe of to this day. A few hours after birth I remember looking out of the window and all of the foliage had peaked just in time for her arrival. It was beautiful. I held her for hours and looked into her beautiful little face in complete wonder. Being adopted, Elizabeth was my first blood relative that I had ever met and she was all mine. I went home the next day in anticipation of seeing my mom and grandparents and could hardly wait to introduce them to their new grandchild.

My second pregnancy was very different. It had been thirteen years since the previous one and it was quite a shock to my system. I had just lost both of my grandparents, and my mother was unable share my joy making it an emotionally difficult pregnancy. Chris and I were still getting to know each other while preparing for a baby at the same time which was not the most ideal of situations. We made it through and after a few days of “Are these contractions, are they not contractions?”, we went to Jordan Hospital and had a cesarean on her due date. Adeline Sara was born at 2 am after great fanfare and  a tense spinal. Because of the c section, my milk was delayed and she was starving. She had trouble latching on and didn’t understand that 3AM was not a good time to be up screaming. I became very depressed at what I perceived to be my ineptness at being a new mom all over again. I felt guilty that I couldn’t spend a lot of time with Liz and tried to find a balance between Addie’s demands and Liz’s needs.  It was quite a learning curve, but after her first birthday we felt like we reached a good place and life was good.

My third pregnancy started out great- I was able to run, stay active, did my best not to nap in the afternoon and dealt with the morning sickness just fine. We also didn’t say anything, for superstitious reasons and decided to wait until after our first appointment to tell everyone. I felt great and we were both excited about having another baby to our new family. I had always wanted three children and was very happy that we were ready to make sacrifices to have another one.  Soon the day came when we were going to have our ultrasound to see what we were going to have. That morning we were giddy with happiness at the prospect of finally knowing and drove off to Brookline in high spirits. Waiting to be called into the room felt like an eternity, and once called I felt like I was skipping down the hallway. The steps I took to get to the examination room were the same steps that led me away from having a typical pregnancy. I will never forget hearing those words of “I am so sorry to tell you this but your baby will not survive with the heart as it is right now.”

The afternoon was a blur of an amnio, sobbing tears, being escorted down a different hallway so we wouldn’t have to face anyone in the waiting room to speak to our doctor and hundreds of questions. What does this mean? How did this happen? Was it the medication I had been taking that caused the left side to stay undeveloped? What do we do now? How do we tell Liz, we aren’t even going to see her until later that night and she knew we were going to find out the sex today. I called my work to let them know that I wasn’t coming in and I could barely speak between sobbing breaths. We scheduled an appointment at Children’s Hospital Advanced Fetal Medicine department to get an echocardiogram to see what exactly was going on. I woke up the next morning, turned to my husband with tears in my eyes and said “I would give anything to have yesterday morning back. To be in that ignorant bliss, to have that joy back.”

So here we are, 6 weeks out from when Isabelle Faith is to make her appearance. Since then I have reached out to Sisters-by-Heart, Little Hearts, Children’s Heart Foundation and learned that it’s okay to be excited but scared. It’s okay that I couldn’t bring myself to give her a name right away. I learned that this is something that doctors can provide a solution for, that hypoplastic left heart syndrome isn’t the death sentence it used to be. I learned that people sometimes can’t be by your side and to find people who will be. I have learned that family will do everything they can for you because they hurt too and they hurt for us. I have learned that people you work with will provide support without being asked, and some even have walked a similar path. Most importantly, I have learned that my husband, Liz and even Addie are willing to walk this tough road together and we are being held up by each other. Addie provides us with every day joy, Liz gives us pride in her accomplishments and has made it clear that she wants to be there every step of the way. Our parents go their respective places of worship and pray for us, we have been added to prayer circles in a variety of faiths. I have also learned that it is okay to be mad at God, and that it will pass eventually but to have faith that it will pass.

Most importantly, through fellow heart families, I have learned that happy endings are possible and there are gifts that come with having a heart warrior. Today, right now, I am looking forward to meeting our little warrior Isabelle Faith in spite of the circumstances.



7 Weeks and Counting

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.

Boston Children's Hospital, HLHS

Big day tomorrow

Tomorrow we get to see Isabelle and how much she has grown. I can tell you that she mus have grown somewhat judging from the feet I feel under my ribs and her downward facing dog poses in utero. Still, it’s good that Dr. Kolbas wants to check to make sure she is on track for her age. I’ve been pretty tired in the afternoons and have started to take naps regularly on the weekends. Not something I am happy about, since I have such grandiose ideas in the morning on how I want to spend my time and none involve napping. Ironically, this has been the best pregnancy I have had out of the three. I’m grateful that I have had 7 months of relatively minor discomfort, instead of the 9 months of uncomfortable insanity I had with Addie. Elizabeth wasn’t a piece of cake either since I swelled up towards the end and could barely move around. Best pregnancy, sickest child. Gd really has a warped sense of humor.

A woman I work with has been kind enough to share her experience with me with her son who went through a similar journey at Children’s. She told me that when she met the surgeon who was to perform the life-saving surgery her son would need, she studied his hands closely because it was those hands who held her son’s life. I understand that and am sure I will do the same thing when we meet Dr. Emani for the first time tomorrow. This man will hold the miracle of Isabelle’s life in his hands. I try to remember that he will be Gd’s instrument but ultimately it will be those hands who perform the work. Amazing work that will lay the foundation of her survival after birth.

I am also looking forward to seeing Isabelle via the ultrasound. It makes me feel better to see her move around, and am hoping to hear that she is doing well where she is. Isabelle is the first baby I have carried that I am not in a rush to give birth to. I hope she stays in there as long as she needs to. As the days get closer to the deadline, my anxiety grows and I know that we are one more step closer to when she will arrive. Her arrival holds a mixed blessing of joy and pain; we are so happy to add to our family but we are also terrified of what she will be going through. Such a strange way to go through a final pregnancy but it is what it is.


Two Months and counting….

Ok, so it is one week from today that it will be exactly two months until Isabelle is born but it is coming up nonetheless. I have such mixed feelings about this. On one hand, I can’t wait to see her little face, hold her and kiss her little cheeks. On the other, I dread handing her over to the nurses, being alone while Chris goes with her to have her echo and whatever else she needs, and ultimately hand her over to a surgeon who will have her life in his hands. It’s scary as hell. Words can’t describe how this feels and it isn’t all of the time otherwise I would need to be hospitalized or seriously medicated. I’ve been pretty fortunate thus far. Some days I even ‘forget’ that she has HLHS but as the end of my pregnancy is near, those moments of reprieve are becoming shorter and shorter. I think the worst part is knowing that eventually after she is born she will be made to suffer to no fault of her own. We made the decision to continue her life, but whether she lives through this or not is not up to us.
My life experiences have taught me that faith allows us to walk through the darkest of moments and that without it, the world is indeed very dark. The struggle with faith continues to get harder as the days get closer to August 8. Fear is the opposite of the faith, and I am full of it. I can’t have one with the other. I also can’t seem to get over my anger at Gd so asking for help to walk through the fear is next to impossible. My mind keeps thinking of the mothers who have recently lost their babies without warning. What if that happens to me? How am I going to recover from that? Can I even recover?For the most part, I like to prepare myself for the worst case scenerio but that may not be a good plan with this situation. Instead of gathering my strength, I am knocking myself down which is the opposite of what I am trying to do.
I was chatting with another Heart Mom the other day and let it slip out that I felt that I was being “greedy” in wanting another child, and maybe I shouldn’t have been. I do feel like I have brought this upon us, that if we didn’t have another child we wouldn’t have even heard of HLHS never mind dealing with it. We could have just carried on with our lives and been happy with what we had. Problem was, I felt like something was missing.
I wanted a third child because it was something I had always wanted. When I had Liz I wasn’t in a good relationship to welcome another child into and I knew that. When I met Chris and we had Adeline, I knew that he was someone I could enjoy raising a family with and so after Addie’s first birthday, we talked about adding to our family. We were both on board and happy with our decision. I look back at the blissful ignorance we were in for the first three months and long to have that excitement back again. After the lines appeared on the pregnancy test, we shared giggles of excitement and hugs. Walking into the exam room that day in March, holding hands and smiling at each other seem like it was another lifetime ago. 24 hours later we were walking into the Advanced Fetal Care center and learning about Hypoplastic Left Heart Syndrome. That morning I turned to Chris with tears in my eyes and said “I would give anything to have yesterday morning back.” We just held each other for a while in silence, mourning the loss of that bliss and trying to move forward with our circumstances. I keep returning to this time because I am still mourning the loss of having a normal pregnancy and that is ok. I am not going to push myself to get over this quickly, because I know that is unrealistic. My feelings have never been able to be shut off on a whim like that. It takes me time to get to the point where I need to be, and as angry as I am at Gd for saying “No” on my request for a healthy child, I have faith that He will bring me to where I need to be because underneath it all- I am the daughter of Gd and He loves me.