Weekend Update

by Kathy on February 10, 2008 · 3 comments

in Bob, CHD, FET #1, Molly, Sean

I have been meaning to get back here and post an update about this past week, but somehow the time got away from me. So in the spirit of SNL, here is my “weekend update,” though this will likely be a lot less funny and a maybe a bit more informative.

On Monday, my mom and I went for a regular OB appointment. We had a great nurse who reviewed what was going on with our pregnancy and gave me copies of all the referrals to the various specialists we have been meeting with. She also gave me copies of all of the reports that Dr. Cuneo, our perinatal cardiologist, has submitted to our OB’s practice. Reading her reports were very interesting, especially being able to see how she described Molly’s diagnosis, prognosis and even her perspective on Bob and my understanding of the situation and how she thought we felt about it.

Since there are five OBs in the practice we go to, there is usually more than one in the office and you are allowed to pick which one you would like to see much of the time. The nurse we had was very sensitive to who I felt most comfortable with in our situation, but explained that my “favorites” weren’t in the office that day. Of the two that were available, one is familiar with our situation and has a great bedside manner; however I don’t always feel very confident in her medical knowledge. The other I have had very little contact with throughout my pregnancies and just didn’t feel like I have much of a relationship with. So I was torn who to ask for. Interestingly our nurse seemed to be encouraging us to go with the later, even though I don’t know her well, almost indicating that she thought she would better understand our case and be more helpful. So my mom and I agreed that made sense.

When the doctor came in, she was very sympathetic to our situation. She said how sorry she was that we were going through this and how difficult this must be for us. We talked briefly about what was going on and then proceeded to the “normal” part of the appointment. Our OB used the Doppler to find Molly’s heartbeat and estimated it (the ventricle rate) was in the 50s. She also pointed out some noises with the Doppler that indicated Molly was moving around. I found that very comforting that morning, as at the time I had expressed to her that I wasn’t sure that I had been feeling her move much and was a bit concerned. Our OB reassured us that it is normal at this stage of gestation to not feel a baby move frequently or consistently and not to worry. She also confirmed that heart babies, with conditions like Molly’s, often don’t move as much as a healthy baby, like Sean, would have at 19 weeks.

We also talked about the fact that I was still taking Baby Aspirin and whether or not I “should” be. Our OB was confident from the research she was familiar with that its main purpose is to increase blood flood to the uterus early on in a pregnancy, to assist with implantation, and thus there is no significant benefit to take it past 12 weeks gestation. She felt strongly that I didn’t need to continue to take it and I was comfortable with her explanation. So I have ceased to take the 81mg low dose “Baby Aspirin” since and am fine with it. While at my OB’s office I also had blood taken for the “AFP” test to look for signs of neural tube defects. Not that discovering the possibility of them would change much now, in light of what Molly had already been diagnosed with, however it isn’t an invasive test and so I didn’t have a problem with doing it. It is a pretty standard pregnancy test at this stage of gestation and we should have the results sometime this coming week.

Lastly, we talked about some of the recommendations that our MFM (Maternal Fetal Medicine/high risk pregnancy specialist) had discussed with us at our last appointment with him. She agreed that it would be a good idea to have my own heart checked before we might have to decide if we would be “aggressive” and have me take Terbutaline, if and when Molly’s heart starts to fail. However, she clarified that with our insurance coverage, that referral would have to come from our primary care physician (PCP). So that afternoon I made an appointment for Thursday (of last week) with our PCP, who I think is a great doctor and very competent. Anyway, I was very impressed with our OB that day and am glad to know for the future if some of my other “favorites” aren’t available. We scheduled my next regular OB appointment for Monday, March 3.

Tuesday was a bittersweet day. It was also a very exciting day, as it was “Super Duper Tuesday” and our great state of Illinois was one of 24 holding presidential primaries! As many of you know, following the primary presidential race has been one of many things that have helped to distract me at times, in a healthy way, from our situation with our pregnancy. I have become quite a political junky and can’t get enough of the pundants on CNN and MSNBC! 😉 It was with great joy and confidence that I cast my vote for whom I hope will become our next president (not to mention our first female president), Hillary Clinton! 🙂 I know that many of you may be of different political persuasions and/or support other candidates, so I will not go on and on about this. Though it was an exciting day to follow the voting and results across the country! I am also a fan of my state’s very own junior senator Barrack Obama and if he gets the democratic nomination, I will certainly support him in his bid for the presidency. Lastly, as you might know, Bob is conservative/a republican, so it makes all of this extra amusing, since we are following the primaries from different perspectives and supporting different candidates; it makes for some fun and interesting debates between the two of us!

The bittersweet part of Tuesday was celebrating the life of one of my good friend’s late grandmother’s who died on February 1 at age 93. I attended her funeral with another close friend from our neighborhood. I was proud of my good friend for getting through what was understandably an emotional milestone in her life, saying goodbye to her grandmother, whom she was very close to. My friend wrote an awesome poem in tribute to her grandmother and I was glad to be there to hear her share it amongst her family and friends who were there to support her and all those whose lives have been touched by her grandmother. A funny story that I want to share from the funeral is that my friend’s spunky and outgoing grandmother was a greeter at Wal-Mart since the mid-1990s and was so use to saying “Welcome to Wal-Mart!” that one Sunday morning at church when it came time to wish her fellow parishioners “peace be with you,” my friend’s grandmother accidentally said “welcome to Wal-Mart!” My friend ended her poem about her grandmother with a vision of her standing at the gates of Heaven welcoming other souls in the same way she did for so many Wal-Mart shoppers over the years and I just love that image. Having lost all four of my grandparents between the years 1995-2000, I found being apart of my friend’s grandmother’s funeral to be nostalgic, as it reminded me of my experiences when each of my grandparents died and calling them to mind that day was also bittersweet.

Wednesday was most memorable for me, this week, as it was the first day of our pregnancy that I was able to feel Molly move, with out a doubt, and it happened frequently throughout the day! Though I have been pretty sure I have felt her from time to time over the past few months, I have often second guessed myself, especially when the sensations were followed by me passing gas. 😉 So knowing that I was really feeling my daughter and feeling her often on Wednesday was awesome and reassuring, that at least for that day that she was still alive and kicking. Two other events on Wednesday of note were it being Ash Wednesday and a Sean story I will share in a moment. Each year I really appreciate the Lenten Season in our parish church community and in my own personal life. I find the six weeks of Lent to be a good time to try to renew and strengthen my faith. Especially in light of our situation with our daughter’s congenital heart disease, I am hoping to use this time to grow closer to God and be able to find the grace to continue to get through and find peace with whatever comes our way in the weeks to come with our pregnancy.

As for my Sean story of the week, Wednesday night before prayers, Sean asked what we thought Molly looks like. In turn we asked him what he thought she would look like. Sean answered, “like Molly from Toy Story?!” Too cute that he thought his baby sister would look like the animated character, Andy’s younger sister, in the movie, as opposed to looking like him or his parents! I said that I think Molly probably looks like him or some combination of Mommy and Daddy. Sean seemed to be okay with that. Ironically, later that night, I had my first vivid dream about our baby, about Molly. In the beginning she was a newborn baby, very cute and I don’t recall too much about her features. As the dream went on, we were at some kind of family gathering and she was older, maybe between one and two years old, she had light brown curly hair like her brother and a face and eyes similar to his, however being a little girl, she had a cute little bow in her hair. It was a nice dream and though I don’t recall her being sick in the dream, I do recall having a sense that she might not be with us indefinitely and kept trying to take a picture of her, so we would have one in case something happened to her. Curiously, in the dream, I was never able to get a picture of her with her smiling and that captured her character.

Thursday afternoon I met with our PCP. As with every other doctor we have dealt with during this pregnancy, he seemed to be genuinely saddened by Molly’s diagnosis and prognosis and was very sympathetic. He also shared that he had never dealt with any patients in his career that have what Molly has. He wanted to know how Bob, Sean and I were all dealing with this and wanted to be sure that we had a strong support network around us. He was glad to hear that we do and emphasized that if there was anything he or his staff could do for us going forward, to please let them know. Our PCP had one of his nurses do an EKG to check my heart for any arrhythmias and then afterwards he went over the results with me. I was not surprised, but also relieved that the EKG was clear.

Our PCP also referred me for an echocardiogram, which I ended up having yesterday (Saturday), and though we won’t get the official report until early this week, the tech did tell me that he didn’t find anything abnormal about the structure or electrical conduction of my heart. That was also a big relief. I feel much better going into our next fetal echocardiogram this Wednesday, knowing that if Molly’s heart has begun to fail, that we can decide passive vs. aggressive armed with the knowledge that my heart is healthy and thus taking Terbutaline shouldn’t pose any major risks to me and my body. On Thursday I also continued to feel Molly moving around a lot, which was nice and helped me to feel even more connected with her (which is bittersweet at times not knowing for sure what her fate will be).

Lastly, at my prenatal yoga class yesterday (Saturday) morning, I was happily surprised to find out that the focus of the class was “stillness.” I have been attending weekly prenatal yoga classes at our neighborhood yoga center for about a month now and the first few I went to were more movement oriented. They were great workouts and it felt good to stretch and move my body more that I had been recently. That said, at times I felt like I wanted a more peaceful prenatal yoga experience, more focused on relaxation and connection with my mind, body and baby. So when I arrived yesterday expecting more movement, I was blown away but what our instructor had in store for us. We held a variety of poses/stretches for as much as five minutes at a time and our instructor spoke to us about how to breathe through the poses and settle into them. Towards the end of our class, since there were only three of us, she took time to set us each up with three bolsters and many blankets folded under different parts of our bodies. Then she massaged each of our heads with lavender oil before placing a sweet smelling eye pillow over our eyes. Then she talked us through an extremely relaxing meditation segment. By the time she was done, I was very relaxed and felt very much at peace.

I haven’t shared with any of my prenatal yoga classmates that our pregnancy is not “normal.” But I find that to be a nice change, as they in turn treat me like a “normal” pregnant woman, which I don’t get a lot of these days, since many of the people in our life who know about Molly’s diagnosis/prognosis choose to pretty much ignore the fact that I am pregnant. I am not saying that everyone takes that approach, there are a number of our family members and friends who acknowledge that my belly is getting bigger and ask how I am feeling (both physically and emotionally). However, I can appreciate that some of our family and friends are just not comfortable with our situation and though they genuinely care about us, they also do not know what to say and as a result often choose not to say anything at all.

Well, I realize this was another one of my marathon posts. I find that the longer I go between posts, the longer my posts become. As the saying goes, “If I had more time, I would be more concise…” 😉 Anyway, thank you for staying with me and reading. Thank you also for your comments, emails, cards, phone calls, positive thoughts and prayers. It means so much to Bob and I during this difficult and uncertain time in our life to know the great amount of support and encouragement we have coming from all of you. I will check in again at some point on Wednesday, after our next fetal echocardiogram. We are hoping and praying that Molly’s heart will not have begun to fail and that it will still be beating strong on that day before Valentine’s Day. Also, Bob took my 20 week “belly shots” this morning after church, so I will post those later, in celebration of Molly making it to yet another significant milestone in her life/our pregnancy. Take care and may God continue to bless you and yours.

{ 3 comments… read them below or add one }

1 Anonymous February 10, 2008 at 5:14 pm

Thanks for the update! We’ve been thinking about you and Molly! As always your family is in our prayers. We are still praying for a mircale for your precious Molly!



2 Katie February 10, 2008 at 8:47 pm

Thank you for the update. I always worry a bit when I don’t hear from you. And though your updates are very “detailed,” I like to know what’s going on. And as I know that you read my blog, you know I can tend to go on, myself! And I post almost every day! Can you imagine if I went a week!?!


3 Kristie February 11, 2008 at 9:05 pm

Thanks for the update. As always I think of you often.


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