Catching up

by Kathy on March 21, 2008 · 5 comments

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

Good evening. I am sorry that I didn’t post an update after our OB appointment yesterday or sooner today. I realize that I said I would and found out that some of you were concerned when you didn’t see an update. I think the day just got away from me and every time I thought about posting, I just didn’t feel motivated to do so. As it turns out I ended up returning to the OB this morning (I will explain/summarize in a moment) and likewise today got away from me and only now have I finally been able to take some time to check in here. Thank you for understanding and for your comments, emails, phones call, thoughts and prayers. It helps so much during this time to know that we are surrounded by so many loving and caring family and friends.

We expected at our appointment yesterday morning, that our OB’s office would run tests right then and there to try to determine if I was preeclampsic, but as it turns out (I think because of our HMO insurance coverage and/or the age of outsourcing lab work) we were referred to a local lab to have the tests done. They did have me do a urine test in the office and did find some protein in it, which is another sign of potential preeclampsia. However my blood pressure was fine. The OB we saw did see the swelling in my hands, feet and body and confirmed that was also a concern. So after our appointment she sent us to a local lab to pick up supplies for me to do a 24 hour urine test for preeclampsia. I will bring in my jug o’ urine tomorrow morning to the lab, at which point they will also take some blood and test that for other signs of preeclampsia. While I am there our OB also ordered a 1 hour glucose test to check for gestational diabetes. All of those results should be in on Monday morning and our OB said we should keep our previously scheduled appointment for that morning.

Our OB did also check Molly’s heart beat with the doppler and was able to hear it. If I were to be found to be preeclampsic on Monday, our OB explained that they would likely admit me to the hospital and that we would likely deliver Molly later that day via c-section. She would probably be alive at the time, however since there is really nothing they could do for her this early (26 weeks) with all of her complex cardiac defects, we would likely choose for them to take “comfort measures” for her and we would hold her/be with her until she died. If I am not preeclampsic, then we will continue to wait for Molly to pass in utero before delivering her. Our OB also did a good job of explaining more about “what to expect” going forward in preparing for her delivery and there after.

When we got home I placed a call to our hospital’s perinatal support coordinator to touch base about the fact that we could be delivering Molly as soon as Monday and to find out more about our pre, during and post delivery options. As it turns out the perinatal support coordinator, who I know from participating in a support group at the hospital (after my previous miscarriages and interstial ectopic pregnancy), recently broke her leg and is taking some time off from work. So instead of hearing back from her, I received a call from our hospital’s high risk labor and delivery chaplain. I didn’t even know that hospitals have chaplains that specialize in or focus on such specific areas. Anyway, speaking with her was very helpful and she assured me that she would be involved in our delivery, assist us through this process and try to make it as special for us as possible, including having plenty time with Molly (whether or not she is born alive).

The chaplain also called me again today to check in and gave me even more helpful information, including the name of the bereavement photographer that we will most likely work with the day Molly is born. She also told me that the photographer likes to touch base with families who do know ahead of time that their baby is most likely going to be stillborn, or may not live long, to talk about the service he offers and answer any questions we might have. So I also ended up calling him this afternoon and speaking at length with him about what to expect. I was very impressed with him and find comfort that he will likely be helping us to capture our time with Molly after she is born in a respectful, unobtrusive and compassionate way. He actually has his own website and if you are interested in getting an idea of what he does and how he helps families like ours you can check it out: http://www.toddhochberg.com/main.html. The chaplain also had spoken with some of her colleagues who deal more with young children and had some suggestions for how to approach all of this with Sean.

After much discussion, research and insights from professionals and other families who have been through losing a baby, while having an older child, Bob and I have decided that we will tell Sean tomorrow, when the time seems right, that his baby sister is going to die. We believe that this will be easier on him, not that it will in any way be easy, then breaking the news to him after the fact. This way he can warm up to it, ask questions and it may even be a healthier way for all of us to spend Molly’s final days or weeks together, being open about her going to Heaven sooner than we would have hoped for. Sean continues to amaze us with what he seems to understand about life in general and the connections he is able to make. One example being, one of my girlfriends stopped over today with her daughter and at one point Sean out of nowhere told them, “Mommy has a baby, Molly, in her tummy, but she is sick.” So we think being more open with Sean about what is happening with his baby sister will be a good way to start to prepare him for what is to come.

Another few things we have learned in preparing to tell Sean about Molly, is that it is okay (and really even encouraged) that we share our emotions and sadness with him, in part so he will see, by our example that it is okay for him to cry and feel sad about this, that he doesn’t need to act like it isn’t a big deal or that it isn’t okay to be sad about Molly dying. We also do intend to talk about Heaven and our belief in God and that we believe that she will be going there, to try to help him also find some hope and peace in her death. Lastly, we have learned that rather than saying that Molly is “sick,” that we should say that she is “very, very sick.” That way he will not equate a cold or other common childhood sicknesses with death. Likewise, we plan to explain that most people don’t die until they are “very, very old,” as opposed to when they are “old,” since that too could be confusing with his understanding of age and when a person becomes old.

This morning when I woke up I was not feeling well physically or emotionally. Usually if I am not feeling well in one area or the other, I manage to pull myself together and get through the day and am able to care for Sean like normal. However, today I was just feeling really overwhelmed. I know that so many local family members and friends have offered to help in anyway they can (and we are so touched and grateful), but it was one of those days when I just felt like I needed my Mommy and Daddy. So knowing they are retired and have also offered to help in anyway they can, I called and asked them to come down and spend the day with us. They were willing and able to come and it really helped me to get through the day. Also, since I wasn’t feeling well physically this morning and was feeling a bit paranoid about the possibility of me being preeclampsic, I finally decided to touch base with our OB, just in case. Our OB said that I should come in and so my Mom came with me, while my Dad stayed with Sean. The appointment was very reassuring and our OB (my favorite in the practice) that we met with really helped me to relax more about my own health right now. He also was able to shed some more light on what to expect going forward with this process of preparing to deliver Molly.

Finally, our OB also gave me something to think about in terms of the length of time it might take Molly to pass, before she would be delivered, if I am not preeclampsic. He explained that with my history (my c-section with Sean and another with our interstial ecotopic) and with Molly now being 26 weeks gestation, that they don’t think it is a good idea to try for a vaginal birth. He also explained that Molly, and thus my uterus, are still not very big (though her abdomen being swollen is bigger than a typical 26 week old fetus, on Wednesday it was measuring closer to that of a 32-33 week old fetus) so it can be more difficult to deliver her via a horizontal c-section cut. Therefore, if she is delivered soon, they might have to do a vertical cut, which makes for a harder recovery for me and can compromise our future chances to carry a pregnancy (not that we are focusing much on that right now). So he encouraged me to think about it as the longer Molly survives and grows, the easier it will be to deliver her and thus the safer it is for me and for the future. I find that perspective to be a helpful way to think about this part of Molly’s journey, especially the idea that she might be helping to preserve my womb for her potential future siblings, even though after everything Bob and I have been through trying to have another child (over the past four years) we have come to the conclusion that if Sean ultimately is our only living child, we feel extremely blessed and lucky.

So I know this was a very long update. As they say, if I had more time I would have said less. I just wanted to share so many of the things that we have experienced and learned over the past couple of days and no matter how concise I tried to make this, I kept thinking of more information that you might want to know. Thank you for your continued support and encouragement. We have been so touched by the outpouring of love, care, concern, empathy and emotion that you have given us during our pregnancy and especially since we shared our latest update about Molly on Wednesday. If not before, I will try to update after our appointment on Monday if I am able. If for some reason I am not able, I may try to work it out for another friend or family member to do so on my behalf to keep you posted as to what is happening with Molly and our family. We don’t know if Molly’s life will continue for days or weeks, however we continue to try to make the most of our time with her. She continues to move and give me love taps quite a bit and last night Bob had the bittersweet experience of feeling her move, by putting his hand on my belly, for the first time during this pregnancy. It was a special moment for both of us and I believe it helped him to feel a bit more connected to his daughter than he has been able to previously.

May God continue to bless you and your loved ones.

{ 5 comments… read them below or add one }

1 Fertilized March 21, 2008 at 11:20 pm

Huggin you this Easter weekend with lots of prayers for your family

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2 Natalie March 21, 2008 at 11:39 pm

My heart just aches for you. I’m sooo soooo sorry you are having to experience this. You are in my thoughts and prayers as you move forward. You are an amazing person and are being so strong Kathy. TONS OF HUGS!

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3 SommerNyte March 22, 2008 at 12:00 am

Thank you for the update. Thinking of you as always.

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4 Katie March 22, 2008 at 10:42 am

Oh, Kathy.

I am just so sorry that this is happening.

I am glad that it seems you are surrounded by such caring and compassionate medical teams and also that your family is nearby to help.

I wish there was more that I could do from this distance. I just pray, but I wish there was more.

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5 Melinda March 22, 2008 at 1:24 pm

P & PT for you and your family.

{{HUGS}}

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