Pinch me

by Kathy on January 7, 2008 · 9 comments

in CHD, FET #1, Molly, Sean

To quote one of my favorite Barenaked Ladies songs:

“Pinch me, pinch me, cause I’m still asleep. Please God, tell me, that I’m still asleep.”

There are definitely mornings when I have woken up since last Wednesday, when we got the news of our baby’s heart condition, when I did have to remind myself that this is all very real and not a dream. Instead my recent dreams have consisted of such amusing things as walking and talking with Michelle Obama (democratic primary presidential candidate Barack Obama’s wife) who was giving me reasons why I should consider voting for her husband and last night I dreamt that I was a celebrity (not sure what I was famous for) contestant on Dancing with the Stars and was so excited to start learning the first ballroom dance, when I realized that being pregnant, my participation in the show/competition was probably not a great idea.

Anyway, this is real, it is my life and with each passing day I am learning to accept that and make the best of our situation with this pregnancy.

Today I am 15 weeks and 2 days pregnant. In a “normal” pregnancy I would probably be celebrating yet another milestone, being another week closer to viability and believing that the odds were in our favor that our baby would go full term and be born healthy. Instead, every day that our baby survives feels like a mixed blessing. I so much want to give our child every chance at life, however there is a part of me that hopes and prays for mercy, that God will take him or her sooner, if he or she will die soon after it is born, if it even makes it to birth alive.

We cannot thank you all enough for the amazing and supportive comments, emails and phone calls that we have received since I shared our news about the diagnosis on Wednesday. We understand that next to us, this is hardest on our family and close friends and appreciate your kind words, thoughts and prayers. We realize that many of you “don’t know what to say.” Please know that even the simplest comments and emails in which you express your care, concern, thoughts and prayers mean so much to us. Though I haven’t replied to many of your emails yet, I do intend to in the days come. Many of you have expressed that we are “handling this so well.” In many ways we are, but we also have quickly come to terms with the idea that we have to live our lives the best we can right now and since we have no idea if our baby will live days, weeks, months or more, we are determined to keep moving forward. We certainly have our moments, mine often come at night when I am trying to fall asleep and my mind starts to spin thinking about the ramifications of the various scenarios that could play out with our baby and this pregnancy. Overall though, we really are doing fairly well and trying to not lose hope that our baby could survive, while fully understanding that it likely will not, be it sooner or later.

I had a routine appointment this morning at our regular OB’s office. My mom came with me, since we weren’t expecting anything significant to take place. Bob is busy at work and since my mom is retired it has been awesome to have her with me at appointments that Bob and I decide it is okay for him not to be present for. It is nice to have my mom there as a second set of ears, as well as just in case something were to happen (like they couldn’t find our baby’s heartbeat or it were to be extremely low) for moral support. My dad stayed home at our house, in case we didn’t get there in time to pick up Sean from preschool (today was his first day back after his winter break) which we greatly appreciated.

The appointment was relatively uneventful, which I consider to be a good thing. As Dr. Cuneo (the perinatal cardiologist) had told us would be likely, she had not gotten the report from our echocardiogram over to our OB’s office yet. She had told us that she would try to call and speak to one of our OBs in the practice, however there was no indication in my file that this had taken place. So I ended up explaining to the nurse and doctor we met with this morning, to the best of my ability, what the diagnosis is for our baby’s heart condition.

The nurse, one of my favorites at our OBs‘ office, was very compassionate, seemed visibly saddened when I told her about our baby’s diagnosis and gave me a big hug. The doctor, also my favorite of the five in the practice, was also very kind in talking with my mom and I about our baby’s prognosis. This particular doctor has not been involved in this pregnancy yet and I was grateful to have him be available to consult with today. He is the doctor who did the surgery to remove our interstitial ectopic pregnancy two years ago and is the one I that I find seems to have the most experience and relevant medical knowledge when difficulties arise in our pregnancies. Unlike Dr. Cuneo, this doctor seemed to think the odds were higher that our baby would die in utero and seemed more optimistic that if it made it to birth that it could survive longer, however that might have just been my interpretation of what he was saying. He definitely seemed a little dumbfounded that after all we have been through trying to have another child that bad luck had struck us again.

Our OB used the Doppler to check our baby’s heart rate, which he was able to find. I was very impressed that he seemed to be able to read and differentiate between our baby’s atrial heart rate (which he thought was in the 100s), the ventricle (which he thought was in the 50s) and mine. Because of this it was not necessary to have an ultrasound today, which was fine with me.

The doctor did assure us that no matter when and under what circumstances this baby is born (dead or alive) that lots of doctors (including specialists) will be consulted as to the best way to approach the birth and thereafter, depending on the outcome. I did find that reassuring, that we really are in very good hands from our regular OBs to our perinatal cardiologist. I asked our OB today depending on if and when our baby were to die in utero from this point on (being between 15 – 16 weeks gestation), what would be the likely way they would have me deliver it, especially in light of the surgery to remove our interstitial ectopic pregnancy and its potential strain on my uterus. I was surprised and glad to hear his answer, which was there is very good chance if I delivered before 24 weeks, that it could be a vaginal birth. We consider that to be a small, but relevant silver lining, if we were to lose this baby in utero that I might not have to have another (what would be essentially my third) c-section. As it would hopefully thus preserve my uterine lining from growing too thin and thus keep our options open for if and when we were ready to try again with our three frozen embryos.

Our OB also said that he was very encouraged by the fact that this pregnancy took and has sustained thus far, in terms of the state of my uterus. He believes for it to have been able to grow and support this pregnancy even to this stage of gestation indicates that it is likely in very good shape and maybe even close to “normal.” So again, I found this assessment to be another silver lining in what is turning out to be far from a normal pregnancy.

As I predicted, our OB didn’t feel the need, nor do we, for us to return sooner than the standard four week increments at this stage of our pregnancy, especially since we are seeing Dr. Cuneo bi-weekly. So I won’t return to our regular OBs‘ office until Monday, February 4. After scheduling the next appointment, on our way out of the office, the ultrasound tech, who has always been so compassionate and supportive over the years that we have struggled to try for another child, stopped me in the hallway and asked how I was doing and what was happening with our pregnancy (since the last time he saw me he had discovered and recorded our baby’s first low heart rate of 65 and the irregular heart beat on Monday, December 17). I told him the diagnosis and similar to how our nurse had early, seemed visibly saddened by the news and gave me a big hug. When my mom and I left office she commented on how impressed she was by the staff members’ responses to learning our news and how it was like a family the way they all shared their care and concern. I agreed and joked that it happens when you spend that much time there, as we have over the past 3 1/2 years since we began our journey to try to have another child.

After the appointment we met my dad at home and we all went to pick up Sean from his first day back at school. He had a fun first day back and was excited when we surprised him with the news that we were going out to lunch at a restaurant (Portillo’s), followed by going to see the Disney movie Enchanted at the theater! Sean and I had already seen it with Bob a few weeks ago, but Sean wanted his grandparents to see it and I enjoyed it so much the first time, I didn’t mind going again. It was a nice diversion this afternoon, to spend time with my parents, Sean and an instant classic fairy tale.

Next Wednesday’s echocardiogram and consultation with Dr. Cuneo seems like a long ways away, but I know that the time will pass quickly and I am encouraged that our OB was able to find our baby’s heartbeat and rate today. I will likely check in before then, as at times like this, when I am somewhat stressed, I find blogging to be comforting and therapeutic.

Thank you for your awesome continued encouragement, thoughts and prayers. Bob and I know that we can and will get through this difficult time, especially because we feel so much love and support from all of you. Take care and God bless.

{ 8 comments… read them below or add one }

1 Anonymous January 7, 2008 at 9:47 pm

you are in our prayers. I am so sorry, I have been following your blog and was so sad to see the recent news. Hugs.



2 Fertilize Me January 8, 2008 at 10:19 am

Everyday Contains mixed feelings for you I know. You are in my prayers. I am glad you have such compassionate dr’s


3 Carole January 8, 2008 at 12:59 pm

I continue to hold you and your family in my prayers.


4 T-girl January 8, 2008 at 6:01 pm

I am so glad that all you have such a great support from the doctors. It really helps to feel so taken cared of.

I know you are very strong but don’t feel bad for having your “down” moments, actually I truly believe we always need to take time to grieve. For me those moments are part of the healing process and I NEED them to let my feelings and emotions out.

A big hug!!! 😉


5 Justine January 8, 2013 at 12:27 pm

I’m so glad to visit back here … and not surprised by the beautiful, brave, strong, generous-hearted woman you were even then, after you’d received this news. I’m so glad that you had supportive people along the way, and as you say in today’s post, were able to choose your reaction to the news, based on the firm foundation on which you stood.

Going back to the future to comment there.
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6 April January 8, 2013 at 9:51 pm

Kathy, my heart breaks anew for you and your family every time I read back to a post from this time in your lives, but I am always struck by how much I admire your strength and how glad I am that you did and do have this amazing network of supporters.
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7 Lori Lavender Luz January 8, 2013 at 10:48 pm

It’s been one thing to know your story in the rear-view mirror, but it’s another to read about it as it played out in such a heart-wrenching way.

You are a woman of grace, for sure.
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8 Amy January 9, 2013 at 7:37 pm

Wow!!! As I read this (in the future) my heart just ached for you. This part really struck me when you were discussing your Dr., “He definitely seemed a little dumbfounded that after all we have been through trying to have another child that bad luck had struck us again.” As this was my reaction, except I felt that numb feeling in my body when you think you feel another’s pain. I am honored to know a woman of your strength, and I second Lori, Grace, who also has such a respect and love for the dignity of all life. I relate to this as (though not the same) reminded me of the day we received the first news that Madeline had major heart defect soon after her Down Syndrome Diagnosis. A feeling you can’t describe knowing that your baby is ill and knowing it is completely out of your hands. I am relieved to know you had compassionate doctors and nurses caring for you and Molly. I, to, was lucky that way. I cannot put into words how this post has affected me this last 24 hours, to know that 5 years down the path, in the face of devasting loss, your Grace and Strength have only grown and your generous spirit is so giving to others who don’t know which way to turn. Again, I am so honored to know you and find hope in your continued hope and faith.


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