A long day & a little good news.

by Kathy on January 24, 2008 · 6 comments

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

Yesterday was another bizarre and very long day in our pregnancy, but overall things went well and we actually got a little good news. We thought our two appointments would last between 9:00 a.m. and maybe noon at the lastest, so when we didn’t get home until 3:00 p.m., not having eaten lunch yet, you can imagine how exhausted we were. Sean got to go home after preschool with one of his good friends/classmates and play with her and her younger brother, so we were pleased to know that he was having fun with his friends and their mom (also one of my close friends). We continue to be so grateful for and feel so blessed to have the support our family and friends in so many ways, including being willing and able to care for and spend time with Sean while we attend our doctor appointments.

Our first appointment was with our perinatal cardiologist, Dr. Cuneo. Surprisingly the echocardiogram (echo) showed that Molly’s heart has not begun to fail, contradictory to Dr. Cuneo’s prediction when she called me on Friday! Her heart has not enlarged nor were there signs of fetal hydrops. We also heard Dr. Cuneo say to the tech, “her veins look good.” Molly’s atrial heart rate was 113 and her ventricle heart rate was 56. Those numbers were actually up from last Wednesday’s 106 and 54! The echo tech explained that she may have been off a bit in measurements last week, but none the less, essentially there has been no significant change in her heart rate since Molly’s first echo cardiogram three weeks ago! This is a good sign, as we understand it, as the longer Molly can go with our signs of heart failure, the better her chances of survival in utero. After all the discussions we have had, since Dr. Cuneo’s call on Friday, asking us to come in one week earlier than our next scheduled appointment and concerning us that we might have to make “the decision,” we did not have to choose yesterday between passive or aggressive, which was a relief.

Dr. Cuneo said we didn’t need to return for another two weeks, based on what she saw yesterday, however when we asked about cancelling the appointment for next Wednesday, she said that we were welcome to keep it, if we’d rather have the peace of mind it might bring to get an update on Molly’s heart condition sooner. We have decided to keep the appointment. The echo tech also encouraged me to call “central scheduling” for the hospital and make our future bi-weekly appointments now in effort to get better times, first thing in the morning, when we won’t have to wait as long to get in. So last night I did call and schedule appointments for our next three potential visits, which would take us through early March. I realize depending on how things go, we may need to go more frequently or not at all, but we can always schedule more or cancel them, and now instead going in the mid-afternoon (except for next Wednesday), our appointments will be closer to 9:00 a.m., after which Bob will be able to go in to work.

After we finished at Dr. Cuneo’s office, we moved on to the Maternal Fetal Medicine (MFM) office, where our primary OB had referred us. First we met with a nurse, who we think may be sort of an assistant to Dr. Suarez, the MFM (which we learned is the title given to OB’s who specialize in high risk pregnancies) that we ultimately consulted with yesterday. The nurse went over some of our reproductive history, as well as our current pregnancy. Then she told us that next either we would have a Level II ultrasound to check on Molly’s development, in terms of her growth overall, or Dr. Suarez would be in to talk with us.

We waited a little while in the room until a woman came in, who turned out to be the genetic counselor that my mom and I had met with when I was 11 weeks 5 days as part of our 1st trimester screening. She asked us to come with her to another meeting room. When we got there she proceeded to review basics about chromosomal abnormalities and then explained that when cardiac anomalies are discovered in fetuses, that their office routinely offers parents the opportunity to have an amniocentesis (amnio). Bob and I were taken a back, as no one prior to this had mentioned that this might be something we should consider having, after our 1st trimester screening results were so good. The genetic counselor explained that in the “research” that she and Dr. Suarez had done, reviewing articles about Molly’s heart defects, that they did find a correlation in some cases between Left Atrial Isomerism, which she has and Trisomey 18 (a severe chromosomal defect).

Bob and I have both always been strongly opposed to having an amnio in our pregnancies, no matter what suspected defects or abnormalities our babies might have, as we have known we would never terminate our pregnancies and thus didn’t see the point. We recognize that some argue when you know for sure about chromosomal abnormalities, you and more importantly your baby’s doctors can be more prepared at their birth to deal with any issues that might require immediate action, such as surgery. But that said, we already knew about Molly’s heart defects and so we were unsure how much more we could gain from amnio results. We supposed that if we did have an amnio and discovered that Molly’s has Trisomey 18, that we might be more likely to go passive, if and when we needed make such a decision, versus aggressive, if her chromosomal diagnosis were to be so severe combined with her heart defects, that we believed it was the merciful thing to do for Molly and everyone involved, not to take extraordinary measures to keep her alive in utero. So all this said, in the heat of the moment, Bob and I felt like we were being encouraged to have an amnio and actually tentatively agreed to having one! Talk about situations you never dreamed you’d be in and decisions you never thought you’d make… The genetic counselor reviewed some of the risks to the baby and some things to watch for after the procedure, bleeding, heavy cramping, etc. She explained when and how we were learn the results and then it was time for our u/s and then to meet with Dr. Suarez. We also found out that along with the amnio, since my blood type is A -/Rh – that I would need a Rhogam shot before we left the office that day, just in case. Apparently the procedure could put our baby and future pregnancies at risk if I didn’t have the shot again, even though I had one at the ER 12/22/07, because of the bleeding I had experienced that day.

When the ultrasound began, it was nice to be able to Molly’s sweet little body from different angles as the tech took measurements. When we go for her echos the focus, understandably is on her heart, so they typically zoom in pretty quickly on the chambers and start measuring her heart rates and such and don’t spend much time zoomed out so we can see all of our daughter’s features. So it was cool to see our baby girl move around and at one point it even looked to me like she was waving to us! 😉 Anyway, her measurements were great! Yesterday I was 17 weeks 4 days based on our estimated due date and her combined measurements were 17 weeks 1 day, which Dr. Suarez said was great, that clearly she is continuing to grow and develop on track, as far as they can tell. He did explain that babies, even with problems like Molly’s usually do continue to grow “normally” until sometime between 20-24 weeks, at which point, sometimes they can start to lag behind in their development and thus if and when they make it to birth be smaller and have a lower birth weight.

After the u/s tech took all of the measurements she needed, she went and got Dr. Suarez to meet with us and talk about our situation. He was also going to be the one to preform the amnio. So when Dr. Suarez enters the room he says something to the effect of, “so I hear that you want to have an amnio!” Bob and I were like, “we don’t want to have one, we thought that you all thought it would be beneficial to our baby and your work as our doctor, for us to do it.” That led to an interesting and very stressful conversation in which Dr. Suarez kindly went over the risks to Molly and me if we followed through with the amnio and though he would not tell us what to do. We ultimately decided that it was not worth it to have an amnio. It was during our discussion with Dr. Suarez about the amnio that I lost it emotionally. I started bawling and told him that I was just so confused. I explained that I understand, with the advent of medical malpractice suits, why doctors are no longer allowed to give their opinions to patients, only to inform us to the best of their ability what our options are, the pros and cons of them and then we have to decide what to do. But I also said that in our situation, when Molly’s diagnosis is so rare, it is scary to be making such a decision on our own.

Dr. Suarez was very kind to us and spent about an hour and half going over Molly’s diagnosis with us, discussing what he knows about the prognosis (mostly based on articles he has read written by Molly’s cardiologist, Dr. Cuneo, who truly is one of the most accomplished and knowledgeable specialists in her field) and helping us to fully understand the benefits and risks of our options in dealing with our pregnancy. He insisted that we talk about termination, so we would fully grasp why some people might consider it. We insisted that we would never do it, but he just wanted us to understand that terminating a pregnancy at this stage and under these circumstances is not the same as people who get pregnant “accidentally” and then don’t want to live with the results of their actions. He told us that even being passive had some dangers to me (not statistically significant, but still relevant to be aware of, especially in light of my history with my uterine surgeries) and that we needed to understand that too. Dr. Suarez explained that there is a slightly greater risk for me having had an interstitial ectopic pregnancy removed (probably about 1%), than someone who has only had regular c-sections, the further along I get my pregnancy. So one could argue that a termination would end a seemingly doomed pregnancy sooner and protect my uterus.

In the heat and emotion of the discussion, for the second time yesterday, Bob and I found ourselves very briefly considering yet another procedure (too put it lightly), that we have always sworn we would never do, unless my life was immanently at risk. Again, it continues to surprise us how circumstances and events can lead people, specifically us, to reevaluate opinions that we have held strong for years. Anyway, after Dr. Suarez went on to explain what would be involved in termination. He shared that our doctors would have to petition our hospital’s ethics board, since it is a Christian hospital, to prove that the termination was warranted in regards to my health and safety or that we would have to do it at a university hospital that doesn’t make those judgements. Then he told us about the actual procedure, including that our baby girl’s head would be crushed and that her body would be removed in pieces. That was all we need to hear to know that we could not and will not consider that option any longer.

Next Dr. Suarez helped us to go over what was involved in us being passive or aggressive. He shared more concerns about my being on Terbutaline and the ability of my uterus to withstand this pregnancy the further it progresses, than Dr. Cuneo or our primary OB has. This also confused us and upset me once again. However, Dr. Suarez was patient with me, very kind and very clear that it might be worth it to us for me to try the Terbutaline to try to save our daughter, if and when the time comes for us to make that decision, he just wanted to be sure that we fully understood the risks involved. When I asked about monitoring of me if I took Terbutaline, Dr. Suarez said the our primary OB could/should see me weekly to check on how I was handling it. He also offered that he could ask our primary OB to refer me for my own heart exam/work up, so we could have some peace of mind that my heart is in good condition, before we might choose for me to take Terbutaline. We liked knowing this option could be available if we go that route.

Dr. Suarez also discussed with us that in our situation we might even want to get a second opinion, from another perinatal cardiologist, though he does believe that especially locally, that Dr. Cuneo is one of the very best in her business. After discussing that later, Bob and I don’t feel that we need to do that, at least at this point, but we appreciate the option being shared with us. Dr. Suarez also talked with us about possibly meeting with one or more of the surgeons that would be doing Molly’s heart surgeries, if she were miraculously able to survive to birth, so we would understand what would be involved and what her chances would be, based on their knowledge of and/or experience with case like hers. Finally, Dr. Suarez encouraged us to call our insurance company and find out how far our coverage goes when it comes to infant heart surgeries and even transplants. We appreciated him pointing out that if Molly does somehow survive, depending on our insurance coverage, caring for her could be very expensive. Of course we believe that our daughter is worth every penny, however we do feel that is a valid consideration in all of this.

So as you can tell from yet another one of my marathon posts here, that our marathon consultation with Dr. Suarez gave us a lot more to consider with our pregnancy and our daughter. We were beyond impressed with the amount of time Dr. Suarez spent with us and the kindness he showed us. As Bob said, it was probably a combination of his genuine care for us as his patients and his professional curiosity about our case, which he told us was the first he has seen in his career and that they have had in their MFM practice. Dr. Suarez ended our meeting by reviewing/summarizing everything we had discussed and sharing with us what he planned to put in his report that he would send to our primary OB. That was also helpful. He picked up on the fact that I lean towards being aggressive, when the time might arise, and that Bob leans towards remaining passive. He talked with us about how that is somewhat normal in these situations for males and females, as well as the mother carrying the baby vs. the father, to see things differently. He encouraged us to think about how we might feel five months or five years from now based on whichever decision we might make and if we believe that will be able to find peace with our choices when the time comes. At Dr. Suarez’s recommendation, we scheduled our next appointment with his practice for four weeks from now, on Wednesday, February 20 at which point I will be 21 weeks 4 weeks, if all goes well.

So in conclusion, ironically, not much changed in our situation yesterday since our echo last Wednesday. This is not a bad thing. It’s just amusing to think the amount of time Bob and I have spent meeting with doctors, our pastor and talking with family, friends and each other about a decision that we thought we might have to make yesterday, but ultimately did not. So we return to our holding pattern. We continue to pray for what is best for Sean, Molly and our family as a whole. We still don’t know for sure what we will decide if and when the time comes for us to choose between passive and aggressive and we are okay with that. My hope for the past week and what I had been talking about with Molly was for her to be able to fight enough to keep her heart rate up, so we wouldn’t have to choose. I am encouraged that at least for this week, Molly was able to keep fighting. Going forward, I certainly hope and pray that she might be able to continue to fight and keep her heart rate high enough to avoid heart failure and the need for medicine, if we choose to intervene.

I have such mixed feelings about what I believe is best for Molly, Sean and our family, in terms of Molly’s fate. I believe in miracles and my heart wants her to survive and be a part of our family here on earth. However I also recognize how very bleak her chances are and how painful and difficult both her life (which could be very short) and ours could be if she does survive. We so appreciate your continued support, encouragement, comments, emails, thoughts and prayers. At the latest, I will check in after our appointment next Wednesday. Thank you for reading my blog and for sharing our journey with us. May God bless you and your loved ones.

{ 6 comments… read them below or add one }

1 SommerNyte January 24, 2008 at 11:49 am

I am so glad to hear that Molly is still doing well! You are never far from my thoughts.

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2 Fertilize Me January 24, 2008 at 12:45 pm

Still praying for miracles – and i just am in awe of reading about your wonder dr’s

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3 Natalie January 24, 2008 at 3:13 pm

Molly is a fighter in all of this!! You are in my thoughts everyday and I pray for strength and courage as the weeks go by.

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4 Anonymous January 24, 2008 at 5:55 pm

Kathy, Molly seems like a real fighter! You are as always in our prayers! I so want a miracle for Molly!

Deb

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5 Anonymous January 25, 2008 at 2:48 pm

Prayers for Molly and your whole family. I am so happy that she is still going strong! It sounds like you are in excellent hands.

Angela (carolinagirl)

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6 Katie January 25, 2008 at 4:29 pm

I am still praying for a miracle for your family. Your faith has certainly been tested in so many different ways, and yet you still remain so strong.

There are already many miracles at work here, from your family’s strength, your personal faith, and the friends that surround you, to the medical professionals (what are the chances that someone so experienced in this like Dr. Cuneo would end up being Molly’s specialist?) that treat you.

I applaud your strength and courage. God bless you, Bob, Sean, and dearest Baby Molly.

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