Our only hope…

by Kathy on February 20, 2008 · 7 comments

in Bob, CHD, Digoxin, Echocardiograms, FET #1, Molly, Sean, Terbutaline

Here is the latest on Molly’s heart condition. Again, I am sharing an email I just sent to our family and close friends. Thank you so much for your comments, they mean so much to me. We did get to have a “3D” ultrasound this morning and I will try to get back soon and post a few of Molly’s pictures, they are really beautiful. I will also be posting some on her CarePage later and you are welcome to check them out there, if I don’t get them up here soon enough.

Dear family and friends,

Thank you for your cards, emails, phone calls, messages (on Molly’s CarePage), thoughts and prayers since my email last week. As always, your support and encouragement means so much to Bob, Sean, Molly and me.

At our echocardiogram today Molly’s atrial heart rate was still irregular. Her higher atrial heart rate measured 151bpm and her lower atrial heart rate measured 89. Her ventricle heart rate measured 56 bpm. Last week her higher atrial heart rate measurements ranged between 141-136bpm and her lower atrial heart rate measurements ranged from 87-84. Her ventricle heart rate measurements averaged 54 bpm. So her heart rate was not indicative of heart failure and was up a bit from last week (likely due to the Terbutaline). There were also no signs of fetal hydrops (abnormal accumulation of fluid within tissues of her body). As I shared last week, there were two indications that heart failure might be not far off, which spurned Dr. Cuneo to suggest that we begin Terbutaline. One indication was the size of Molly’s heart and the other being notching in her umbilical chord.

I shared last week, a healthy fetus’s heart should not be more than 1/3 the size of its abdomen and Molly’s was just over 1/3 (about 34%) last week. Today her heart was about 37%. Dr. Cuneo did not seem concerned about the size of her heart. We also got clarification that the notching was actually in Molly’s umbilical vein, as opposed to her umbilical chord. The difference being the umbilical chord is on the outside of Molly’s body connected to the placenta and the umbilical vein is on the inside of her body. In addition to the size of Molly’s heart and her umbilical vein, Dr. Cuneo explained that last week she also had some concerns about Molly’s ductus venosus (which shunts a significant majority of the blood flow of the umbilical vein directly to the inferior vena cava).

After reviewing Molly’s echocardiogram from today, Dr. Cuneo told us that her ductus venosus was the same as it was last week, which was good. However, Molly’s umbilical vein today was worse than it was last week, which was not good. Dr. Cuneo explained that the “only hope” we have now for Molly is to adjust/increase the dosage of the Terbutaline and add another medication called Digoxin (di-JOX-in). Digoxin is a cardiac glycoside used to treat heart failure and some irregular heart rhythms in adults, however through my taking it (as with my taking the Terbutaline) Molly will hopefully benefit from the medication as it passes through the placenta to her umbilical chord. Dr. Cuneo said that I may experience some nausea as a side effect. I should also mention, that overall my past week being on Terbutaline has not been that bad. The first few days were definitely an adjustment; however I do feel that in many ways I got use to being on it. I have felt jittery and nauseous, but both have been tolerable and more so than I expected.

The bottom line is that when we return for Molly’s next fetal echocardiogram in one week, on Wednesday, February 27, there will be one of three possibilities. If Molly’s umbilical vein is worse than it was today, then Dr. Cuneo explained that at that point there would be nothing else we can do for her. In which case I would cease taking the medications and we would let nature take its course (i.e. she would eventually die in utero over a period of time, which Dr. Cuneo said can take weeks to occur, at which point I would deliver her stillborn). If Molly’s umbilical vein is the same or gets better, which Dr. Cuneo explained can happen with me being on this dosage and combination of medications, then she will continue to monitor her weekly and time will tell if she has a chance to survive. If the medication does allow Molly’s umbilical vein to actually get better, at some point I might be able to stop taking the Digoxin. However, I will remain on the Terbutaline until she is either born alive or Dr. Cuneo determines that it is no longer helping Molly’s heart condition.

Today has been a very emotional one for me getting this news. After last week’s appointment, I let my heart believe that Molly’s prognosis had improved significantly, even though in my head I knew that her prognosis still was not good. I allowed myself to fantasize about her making it to birth and surviving any surgeries or transplants she might need and than going on to be a relatively healthy little girl. I realize now that dream will likely be just that, a dream. Bob and I have not and will not give up hope for our daughter, as her life is not over. We do believe that “where there is life, there is hope.” However, as we have had to do many times throughout this pregnancy, we feel we need to be realistic about her chances and we fully understand that right now things look very bleak.

We ask for your continued positive thoughts and prayers. For Molly’s sake and my own sanity, I intend to be as positive and hopeful as I can be, until I have definitive reason to think differently. We will certainly update you after next week’s echocardiogram and we know that whatever the outcome, we can and will get through it.

On a positive note, at our ultrasound at our MFM’s (high risk pregnancy specialist) office this morning, that was scheduled prior to Molly’s fetal echocardiogram, she measured 21 weeks and 2 days (based on her estimated due date I am 21 weeks and 4 days today) and they estimated that she weighs about 1lb. 1oz., which puts her in the 52nd percentile for her gestational age. So we did find it to be encouraging that outside of her heart defects, Molly is continuing to grow and develop on track. We also had the opportunity to see Molly through a “3D” ultrasound. It was an awesome experience to be able to see more of her features than we have been able to in our regular two dimensional ultrasounds. I will post some of the 3D pictures later on her CarePage if you want to check them out.

Finally, as I type this I can feel Molly kicking and/or punching me. This has become a regular daily occurrence over this past week, which has been exciting and helped me to feel more connected to our daughter. So I will take her current contact with me to mean that she wants me to say hello to all of you for her and thank you for your thoughts and prayers for her and our family.

Take care and May God bless you and your family during this Lenten season.

Love, Kathy

{ 7 comments… read them below or add one }

1 Melinda February 20, 2008 at 9:25 pm

Prayers that the new meds give you and Molly some more time. {{{{Hugs}}}}

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2 Fertilize Me February 20, 2008 at 10:29 pm

praying and praying for those meds to do the job and youe continued health to be watched over! Thinking of you

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3 T-girl February 21, 2008 at 9:17 am

We are here for you, for Molly and for the family.

A big hug for all of you!

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4 soapchick February 21, 2008 at 9:49 am

Keeping you all in my prayers. May God give you strength and grace as you fight for Molly.

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5 Carole February 21, 2008 at 9:58 am

Praying…praying for Molly…praying for you…praying for your family. You are never far from my thoughts.
~Carole

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6 Anonymous February 21, 2008 at 8:46 pm

Molly is very lucky to have her parents being so positive and giving towards her. Thats just what she needs and deserves.

Continued thoughts towards a positive outcome.

A

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7 Katie February 25, 2008 at 1:55 pm

Kathy, I am so sad that things weren’t as good at today’s appointment as you had been hoping. I can’t even imagine how this all must feel. It breaks my heart to think of what you are going through and how strong you remain in the face of it. Baby Molly and your entire family is still very much in my prayers.

Take care of yourself.

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