Our Round Table

by Kathy on January 22, 2008 · 4 comments

in CHD, FET #1, Molly, Sean

Thank you for your comments and emails since my last two posts. It is validating to know that so many of you think it was a good idea for us to name our baby girl and that you like her name. It has also been helpful to have your thoughts, prayers and insights about the decision we may have to make as early as tomorrow. This is a very painful time for us and we are doing the best we can to get through it and make decisions that we can live with. We realize that either way we go, that it will be the “right” decision.

Over the past twenty four hours Bob has teased me that I convened a “round table” of sorts, including key people in our life that might be able to help us move towards a decision from both medical and spiritual perspectives.

Yesterday we went in to our regular OB’s office and met with the doctor in the practice that knows our history the best and whose knowledge and judgement we have the most faith in. Though he admittedly has no experience with our baby girl’s rare diagnosis, he was able to share his confidence in the safety, especially to me and my body, of my potentially taking terbutaline. He was supportive of either decision we might make and understood why we were seriously considering both. He also was able to answer other general questions we had about our situation. Our OB was able to discuss what he considers to be the condition of my uterus (post our interstitial ectopic pregnancy in 11/2005) and how that might factor in to future conception and sustainability of pregnancies (in light of our three frozen embryos). He assured us that though there are no guarantees, that he believes that if this pregnancy ends with a c-section, to deliver Molly, that there is a very good chance my uterus could support one or more future pregnancies. He also let us know, not that we would be in a hurry to try again, that if I deliver Molly prior to 24-25 weeks that we would try for a vaginal delivery and they would want us to wait at least 4-5 months before trying again with the frozen embryos. However, if I deliver her after that time frame with a c-section, than they would encourage us to wait closer to a year before trying again. We are fine with that, as we imagine no matter how this turns out, we would want a significant break, and my body could certainly use one, before we would start over again.

Finally and most encouragingly, our regular OB feels strongly that we should be in the care of specialists, in addition to Dr. Cuneo our perinatal cardiologist, for the remainder of our pregnancy. We will still see our regular OBs at least once a month, however he wants us to see OBs who have more experience with situations similar to ours and deal with many of the high risk pregnancies, that are associated with the hospital where we will deliver Molly, unless she makes it far enough to be a heart transplant candidate (in which case we would deliver at a location closer to where her transplant could take place). The practice of specialists which he is referring us to, is the same group where we had some of the initial ultrasounds that lead to our being seen by Dr. Cuneo, who was able to diagnose Molly’s heart defects. Our OB also arranged for us to have an appointment with this “Maternal Fetal Medicine” group right after our 9:15 a.m. appointment with Dr. Cuneo for our echocardiogram tomorrow morning. So tomorrow should be a very informative day for us.

Later yesterday afternoon, while Bob’s mom was gracious enough to watch Sean a little longer for us, we also met with the pastor at our neighborhood parish. He was transferred to our parish in July and thus we hadn’t gotten to know him well yet, but we really appreciate his being willing to meet with us on such short notice. He has a very calming and comforting presence and we found it helpful to get his faith filled perspective on our situation. Not surprisingly, I guess, he too seemed to understand why we might choose either passive or aggressive options and assured us that he believes that either choice is in line with our faith and christian beliefs. Though he clearly did not seem to think we “should” be specifically passive or aggressive, he did indicate that if we chose to be aggressive, that he believes doing so indicates that our capacity to love and care for our children is very big. Not that he believes we are any less strong or loving if we don’t go that route, but I did find that to be an interesting perspective. He also told us how impressed he was by our approach to all of this and what good parents he thinks we are, based on what he knows of our life and circumstances.

Our pastor encouraged us to continue to pray during this difficult time and to spend more time listening, when possible, then talking to God. He did seem to believe that good would come of all of this and is willing to be there for us in any way he can. He asked that we keep him in the loop and that if needed, he could be at the hospital in a moment’s notice, when Molly is born, if we want her blessed or baptized (depending on if she is alive when she is born) and to support us. He clarified for us that stillborn babies don’t “need” to be baptized or have funerals, as in the Catholic church both of those are done because of the belief of “original sin” which Molly would not have if she were born into heaven instead of earth. However, he did explain that if we wanted him to, if she is stillborn, he would still be willing to bless her and do some kind of private burial service with us for her. Anyway, getting our pastor’s take on all this was helpful and comforting.

Finally, last night I attended a perinatal support group meeting at our local hospital. I have gone to the meetings off and on since September 2006. I hadn’t been to a meeting since we found out we are pregnant, but given our circumstances I thought it was appropriate for me to attend, even though women this far along in pregnancy typically don’t. It was helpful to talk with other parents who have lost children through miscarriage, stillbirth or infant death. Ironically, in the year or so that I have participated in the group I have really taken to heart the stories and experiences of the families who have experienced still birth and infant death, though we have only had miscarriages and an ectopic pregnancy. In the perinatal support group everyone is welcome, no matter what type of loss(es) you may have experienced. Anyway, my point being, if it is possible, I feel like being around those women who have given birth to stillborn babies and those who died shortly after birth, has in some ways prepared me for what may happen when Molly is born. It was good to reconnect with the Perinatal Support Coordinator for our hospital and another staff member, who facilitate the group, as they will likely be around and involved when the time comes for me to deliver Molly. It was helpful to be reminded, by the parents who have given birth more recently, about the amazing support network that exists at our hospital for families who unfortunately have to live through these tragedies of losing children before they are born or so early in their lives.

Saturday evening Bob and I had a nice reprieve from all of this, in that we got to have a night out with my side of the family, to celebrate my dad’s 67th birthday! We had a relaxing and yummy dinner at a restaurant in Chicago called Italian Village, followed by taking in the very fun musical “Jersey Boys.” The musical was exciting and also an interesting way to learn about the story behind “The Four Seasons.” While we were out, Sean also got to have a great night with his paternal grandparents where he had a “sleepover!”

A couple quick Sean stories… A some point in the past week, since we decided to name our daughter Molly, we were saying bedtime prayers with Sean. When he got to the point where he prays for “the baby in mommy’s tummy,” now Molly, Sean said, “can we send out invitations to let people know that we named our baby girl Molly?” Too cute! We explained that invitations are to ask people to come to an event, like a party, that what he was talking about are called announcements. Then we said that usually you don’t send out announcements like that until after a baby is born, however that he is welcome to tell anyone that he wants that we named his baby sister Molly.

Today Sean was scheduled to bring a “show and tell” item to preschool. Initially he wanted to bring his “Leapster” a hand held educational learning/computer game toy. Bob and I both thought he shouldn’t bring something of such value and that could break easily. We also told him it would be difficult to show and tell a hand held game like that. So then Sean said he wanted to bring his baby doll, that one of his playgroup friends gave him awhile back, that at the time he had named Molly. We asked why he wanted to bring his doll and what he would say to his class about her. Sean told us that he would tell his class that he likes to play with his doll, but that when our baby Molly is born, that he wants to give his baby doll, also named Molly, to her. How sweet is that? Bob and I were also unsure if this was a good idea, in light of our situation and tried briefly to divert him to another option, for show and tell. But ultimately Sean wanted to bring his doll and we decided that would be fine.

I also had a really nice lunch on Sunday afternoon with some of my college friends/sorority sisters. It was great to catch up with them and hear what is new in their lives, as it had been awhile since I had seen many of them in person. They all have been very supportive of what we have been going through with our pregnancy and it was good to be able to talk with them candidly about our situation. I know that most of them follow my blog, so ladies if you are reading this… THANK YOU! & A.O.E.

So that is the latest… I feel like I go days without wanting to blog and then when the motivation comes to post, I can’t shut up! 😉 So as always, thank you for walking with me on this journey. I don’t know what the next 24 hours will bring, but I trust that after having the input of our “round table” that when the time comes for Bob and I to decide that “right” path for us to take with Molly that we will make the decision that makes the most sense to us in both our heads and our hearts for our daughter, our son and our family as a whole. Thank you for your continued concern, support and encouragement. This is a very difficult time for Bob and me and it helps so much to know that so many caring family and friends are lifting us up with your thoughts and prayers. We haven’t given up on Molly and we do believe in miracles. We understand that having Molly with us here on earth, after she is born, may not be possible, but we do believe that we will find a way to honor her place in our family, whether she is with us here or watching over us from heaven.

{ 3 comments… read them below or add one }

1 Fertilize Me January 22, 2008 at 4:18 pm

Kathy – it sounds like you and Bob are gathering the right kind of people who have the right kindo f knowledge – for youe right decision to make at the right time to make it.

You are definately in my prayers. Good Luck with your appointments tomorrow

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2 Katie January 24, 2008 at 10:06 am

Kathy, every time I read your blog, I am just amazed and humbled by your ability to handle this in the way that you are – with such grace and dignity, despite your fears and sadness.

Baby Molly is in my prayers daily. I am hoping for a miracle – they DO happen.

It sounds like you have surrounded yourself with the intellectual, emotional, and spiritual support that you need, no matter what decision you make. I think that is the smartest thing that you could possibly do.

Thinking about you.

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3 Jen January 24, 2008 at 12:50 pm

Kathy, I am praying for you and Molly. Thinking of you often. I also understand how you can be making decisions that you never thought you’d make. Last spring a friend of mine had a baby with a single artery umbilical cord along with some heart conditions. This baby did not have any markers for the trisomy, but after an amnio(they were also not sure they wanted one) they found out that she did have T18. They went through a lot of decisions, doctors and tears. I’m not saying that your Molly does have any chromosomal problems, but I’ve linked the website if you want more information. Do not visit it if you don’t as it has some very sad stories. Again, not trying to be a downer, just want to share info. You and your family are in my prayers.

http://www.trisomy18.org/site/PageServer

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