Update on Molly

by Kathy on March 19, 2008 · 33 comments

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

Here is the latest with Molly that we just shared via email with family and friends:

Dear family and friends,

Thank you for your support and encouragement over the last week and really over the past few months that we have been on this journey with our daughter Molly and trying to help her broken heart. Today we got the news that we have been dreading, but always knew was the most likely outcome, there was significantly more fluid in Molly’s abdomen and thus there is really nothing more that we can do, at least medically speaking, to help our baby girl.

I will stop the medications I have been taking and we will wait for her to pass. There are more details related to all of this and our appointments this morning, but I really don’t have it in me to get into them right now. If and when I do feel up to it, I will share them here and/or on Molly’s CarePage (http://www.carepages.com/ CarePage Name: BabyBenson2008). We will be meeting tomorrow morning with our regular OB, as there were some concerns today that I was swollen, retaining some fluid myself and my blood pressure was a bit elevated. These are signs of preclampsia and so they will do some tests to try to rule that out or diagnose it. Our understanding if I am not preclampsic is that we will wait for Molly to die in utero before they will deliver her via c-section stillborn. If I were to be preclampsic, they might decide to deliver her sooner, at which point there would still be nothing they could do to save her, but we would then likely be with her when she passed. I will post an update at some point tomorrow after our OB appointment. At the appointment we will likely get a better sense of what to expect going forward and how we will be monitored in preparation for Molly’s passing and delivery.

I plan to contact our hospital’s perinatal support coordinator soon to discuss our options with Molly (as it relates to what they call a “compassionate care delivery” and then what happens after that) and also to get some recommendations for how to approach all of this with Sean. As we have shared before, Sean knows that his baby sister Molly is sick and that her heart doesn’t work the way it should, but we have yet to explain that she might, or now as it seems, that she will die. This is a very difficult and sad time for Bob and me. In some ways it is also a relief, if that makes any sense, after all we have been through both physically and emotionally to have a better sense of what will happen with Molly after weeks and months of not knowing what her fate would be.

Though we never gave up hope that our daughter might survive, we have tried all along to prepare ourselves the best we could for this possible outcome. I can say that as of now Molly is still active and giving me kicks, punches and/or love taps throughout the day. We did get to have another 4D ultrasound this morning and got some more pictures that I will post on CarePages at some point that show our sweet baby girl’s features a bit more. We don’t know for sure how and when this next part of Molly’s life will go. However, when we know more we will definitely update here, on her CarePage and/or send another email(s).

We can’t thank you all enough for the love and compassion you have shown our family over the past few months. It has made this journey a lot more bearable for us. We know that Molly and her journey has touched each of us (and each of you) in our (and your) own way. We hope that we (and you) are able to find some comfort, peace and inspiration in that going forward. Thank you for your continued thoughts and prayers, especially now, as we cherish our last days or weeks with our baby girl and prepare for her to go to Heaven. Take care and May God continue to bless you and your loved ones.

Love,
Kathy

{ 33 comments… read them below or add one }

1 Anonymous March 19, 2008 at 3:48 pm

Kathy, I am so sorry.

Deb

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2 Jen March 19, 2008 at 4:45 pm

Kathy, I am so sorry. I have a friend that whose daughter died at 27 weeks. She has toddlers at home. I found this book and although it is so hard to read, it is perfect for sharing with Sean.

We Were Gonna Have a Baby, But We Had an Angel Instead (Paperback)
by Pat Schwiebert (Author), Taylor Bills (Illustrator

You and your family are in my prayers, I’m so sorry!

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3 Anonymous March 19, 2008 at 5:26 pm

Kathy,
I don’t have words right now and probably never will. I am deeply saddened to hear this update. My prayers are with you and your family now. I pray you have the strength you need and the peace to get through this time.
((HUGS)) Angela~carolinagirl

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4 Anonymous March 19, 2008 at 5:49 pm

Oh Kathy I am so sorry. I really have no words, Please know you and your family are in my thoughts.

Hugs, Kirsti

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5 Fertilized March 19, 2008 at 6:38 pm

Kathy – just prayer abd lots of hugs

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6 kellg March 19, 2008 at 7:31 pm

Kathy:

Our prayers are with you all. I’m still praying for a miracle, but also that your days with Molly (however many there are) are painless and precious. May God bless.

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7 Anonymous March 19, 2008 at 7:32 pm

I’m so sorry to hear about your recent news. I’m sending my prayers to you and your family.

A

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8 Mary Fran March 19, 2008 at 7:36 pm

Kathy & Bob,
My heart is breaking for you! You are in my thoughts and prayers.

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9 Nurse Lochia March 19, 2008 at 8:13 pm

I am so sorry. You and your family are in my thoughts and prayers.

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10 Melinda March 19, 2008 at 9:07 pm

I’m so sorry to hear of your latest news. You’ve been so strong through all of this. Molly has definitely touched us. You and your family are in my thoughts and prayers. {{HUGS}}

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11 Rachel Inbar March 20, 2008 at 4:52 am

Delurking to say that I admire your incredible courage throughout these difficult months. I also remember feeling a sense of relief when I miscarried after a difficult and uncertain pregnancy. Even then, I felt a sense of peace at knowing that I had done everything I could for my baby (which was nowhere near all the efforts you have made).

My older kids still remember the miscarriage (they were 8 and 5-1/2 at the time), but I think the most important thing for them was to see that despite the fact that I was sad that I would still be able to laugh and do things with them… that life would go back to normal and that I wouldn’t be sad all the time.

Sending you and your family prayers from Israel.

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12 Ellen March 20, 2008 at 7:28 am

Hi Kathy – My heart is breaking for you and Bob today. Sending you lots of love from Texas, Ellen

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13 SommerNyte March 20, 2008 at 8:57 am

My first comment doesn’t seem to have shown up, so I will try again…

Kathy, my heart just breaks for you. After all you have been through to have another baby and then to be losing her… it’s just too much. You and Bob are such kind people, and I was hoping for a miracle for you.

I hope that you are surrounded by friends and family at this time. I cannot imagine the agony that this wait is for you. (((hugs)))

I am so sorry.

Love,
Sommer

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14 T-girl March 20, 2008 at 9:01 am

Dear Kathy,

My heart is broken, I have no words but I do want to send you a HUGE hug to all four of you.

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15 Katie March 20, 2008 at 11:02 am

Kathy, Bob, and Sean,

This is such awful news and breaks my heart. Baby Molly has certainly brought so much into so many lives and I know I have been praying so hard for a miracle.

There are not enough words to truly express my sorrow. I will continue to pray for all of you and hope that God’s love and grace continues to bring you the comfort that it always has.

With love and prayers,
Katie

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16 The Town Criers March 20, 2008 at 12:09 pm

Kathy, I am so incredibly sorry and my heart breaks for all of you right now. Just sending peace and strength.

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17 Kathy V March 20, 2008 at 1:08 pm

My heart broke for you as I read this. I am so sorry about the devastating news and the sad experience that you and your family will have to go through.

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18 Natalie March 20, 2008 at 1:36 pm

I am so very, very sorry. Wishing you and your family strength.

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19 JuliaS March 20, 2008 at 1:45 pm

How my heart aches for you – I am so very sorry.

You and your family are in our thoughts and prayers.

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20 Waiting Amy March 20, 2008 at 1:46 pm

Kathy I’m so sorry for your loss and the struggles your family has faced. As others have said, I’ve been struck by your courage and strength through this difficult journey.

Sending prayers and hugs to you all.

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21 SarahSews March 20, 2008 at 2:03 pm

I’m here from the Lost and Found and wanted to tell you how sorry I am to hear your news.

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22 Geohde March 20, 2008 at 3:13 pm

Hi there,

I’ve just found your blog via Katie’s. I am so sorry.

J

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23 FiestyKel March 20, 2008 at 3:53 pm

I am so deeply sorry. I will keep you all in my thoughts and prayers.

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24 Cibele March 20, 2008 at 6:47 pm

I am so sorry. Hugs

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25 MoMo March 20, 2008 at 7:07 pm

I found you thru the lost and found and I just want to say I am so sorry and I will keep your family in my prayers.

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26 Carole March 20, 2008 at 7:50 pm

Kathy,
I am so sorry. I am praying for you and your family. If there is anything I can do…or any questions I can answer…let me know.

You are in my thoughts and prayers.
~Carole
http://thejourneyfromhere.blogspot.com

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27 Heidi March 20, 2008 at 8:03 pm

I am so terribly sorry. You all will be in my thoughts. Love for Molly

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28 Gayla March 20, 2008 at 8:53 pm

Another lurker here, wanted to tell you how sorry I am. Your strength is amazing. Molly is a very lucky little girl to have such loving parents and you are very lucky parents to have had this time with such a miracle.

Many prayers will be said for all of you. May you find some peace in the love of family and friends-real life and internet.

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29 sharah March 21, 2008 at 5:49 am

Here from L&F. Just wanted to say that I am so sorry — no one should have to go through this.

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30 Artblog March 21, 2008 at 7:33 am

I hate saying sorry, but I am! I wish you strength and courage to get through this.

HUGS

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31 Freyja March 21, 2008 at 1:20 pm

I am very sorry for what you and your family are going through. You are in my thoughts.

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32 Searching March 21, 2008 at 3:40 pm

I’m very sorry. I am praying for you and your family.

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33 Anonymous March 21, 2008 at 8:33 pm

I came here thru Carole’s blog. I just wanted to say I am so very sorry. I, too, received news that changed my life during my second pregnancy at 19/20 weeks. Our daughter was with us for 5 days before she died from Osteogenesis Imperfecta type 2. Please feel free to visit her webpage at http://www.geocities.com/ourangelsydneygrace/
index.html There is a page with helpful links that may be of some help to you. Also, please feel free to email me at ourangelsydneygrace at hotmail dot com. I will be praying for sweet Molly and your family. May God comfort you as only He can.

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