It won’t be long now.

by Kathy on April 9, 2008 · 31 comments

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

I don’t know where to begin this update… I guess in many ways we always knew this time would likely come for Molly and our family, but the reality is still sinking in. Molly is still alive, at least she was as of early this evening, but her heart is definitely failing in just about every way possible. Her ventricle heart rate is down in the low 40s, her atrial heart rate was also much lower than it has ever been, I think irregularly going between around 100 – 70. Her heart was very enlarged. She had more fluid in her abdomen (ascites) than she did three weeks ago, more in her head (scalp edema) and for the first time she had pericardial and pleural effusions (fluid in her heart and chest). All of these are different types of fetal hydrops and indicate, with their severity, that it probably won’t be long now before she will die. Even looking at her profile on the ultrasound today, her face just looked different, swollen, not like the normal features you would see on a baby at this stage. The u/s tech even tried to do a 4D u/s, but it was difficult for her to be able to get a good view of Molly’s face. Bob and I had actually found a picture online last night of a hydropic baby and though it was hard to see, it helped prepare us for what Molly may look like when she is born.

In addition to Molly’s condition today, our MFM (maternal fetal medicine) doctor, or perinatalogist, was also concerned about me and my health and well being. When we first arrived my blood pressure was high. I thought it was because I was anxious to see how Molly was doing, but he was worried it could be a sign that preeclampsia could be setting in. That said, later when it was taken again, it was back to normal. Our MFM also voiced concerns about my uterus, as with Molly’s level of swelling my uterus is much bigger than a typical 28-29 week uterus would be. As some of you may recall/be familiar with, when our interstitial ectopic pregnancy was removed in November 2005, they had to repair my uterus at the site of where our baby had implanted (in between my right tube and the opening of my uterus) and thus have always had some concerns about how far it could stretch in future pregnancies without rupturing. The plan when we originally thought this was a more “normal” pregnancy was always that they would not let me go into labor, would monitor me and my uterus closely and would deliver me via c-section closer to 37-39 weeks.

The point of all this is that having seen the ultrasound with our MFM and actually having the opportunity to also have Molly’s current condition confirmed with a fetal echocardiogram with our perinatal cardiologist today, as well as talking at length with both our MFM and our perinatal cardiologist, it became clear to us that there really is no hope left for Molly to survive. It’s not that we or they don’t believe in miracles, however we just all recognize that Molly’s condition has deteriorated beyond anything anyone medically could do for her were she to be born alive now or really anytime in the future. So in understanding all of this, the discussion with our MFM moved to what is best for everyone involved and what would be in my best interest in terms of my own health. We covered all the different options and scenarios that we ultimately have to choose from going forward. I am not going to get into all of the details, but what we have decided is that we will deliver Molly as soon as all of our doctors can work together to arrange for that to happen. With this option there is a chance that she will be alive when she is born and that we might get to have a brief amount of time with our daughter before she would die, in our arms, hopefully feeling how much we love her. We welcome this opportunity, but also understand that even with the possibility of delivering her sometime in the next few days, she still may die before then. Though I have felt Molly move today, there has been a noticeable decrease in her activity, since as recently as last night. I was literally just typing about how it had been at least a few hours since I last felt her, when I just felt her kick me, so apparently our daughter has a sense of humor (always keeping Mommy wondering and not withholding her love taps for as a long as she can), even this close to the end.

At this point we are waiting to hear from our OB practice to find out what the exact plan for delivery will be and to schedule a time and day for it to take place. I don’t think we will hear from them yet tonight, as it is getting late, so I imagine they will contact us tomorrow. We didn’t actually get to talk with any of the OB’s in the practice today, but our MFM did and explained that we should wait to hear from them in terms of scheduling and such.

So that is where things are at. It has been an extremely difficult day emotionally for Bob, me and our families. As many of you know, Bob was not able to be at the appointment with me today, as it got switched to the afternoon from the morning (when it was originally scheduled to take place) and he had a very important meeting at work this afternoon. However, I was able to talk at length with him, over the phone, after his meeting and fill him in on what was happening while still at our MFM’s office. Since we have known about Molly’s diagnosis and prognosis for so long, Bob and I have had plenty of time to discuss our thoughts, feelings and opinions on what might happen with her and so I also had a pretty good idea of what he would think about all of this. I felt very blessed to have Bob’s mom with me today, as she was very supportive and compassionate during our very long appointment with our MFM during which all of these details and decisions were discussed.

We do feel some sense of relief that the end of this roller coaster ride, that we have been on for almost 17 weeks now since we first found out there was something wrong with Molly’s heart (her heart rate was much lower than it should be), is in sight. We do feel blessed to have had time to connect with our daughter, especially me being able to feel her move inside me so much. However, we are exhausted from the journey and in many ways feel ready for God to take Molly to Heaven. We did explain to Sean at dinner tonight, to the best of our ability, the latest news about his baby sister. We think he understands that she will die very soon and we told him that I would be going to the hospital to deliver her and that after she is born, he can come and see her, hold her and give her the teddy bear he picked out for her if he wants to. He said that he wants to do all those things and seems to have a healthy grasp, as much as a four year old could, on what is happening. We have talked about how she will be our special angel in Heaven after she dies and that we can talk to her and think about her anytime we want. Sean seems to like that idea.

I know this has been a long post, but as I have shared before, I find it therapeutic to write in such detail about what we are experiencing on our journey with Molly. It helps me to work through my feelings and emotions and I also know that many of you appreciate my openness during this time. When we have more details about the timing of my c-section to deliver our baby girl, we will certainly let you know. This day has all been a lot to take in, so it may still take me sometime to fully digest.

Thank you so much for your continued thoughts and prayers. This entire pregnancy has been so much easier to deal with knowing we have been so loved and cared for by you our dear family and friends (even those of you whom we have not met, but found your way to us and have joined us on our journey praying for and waiting with Molly). We continue to be blown away by how our daughter Molly Marie has seemed to touch so many people’s lives in so many different ways over the past 6 months. It helps us to feel that her short life has not been with out purpose or reason. We believe that good has and will continue to come from her time here with us and after she goes to Heaven.

May God continue to bless you and your loved ones.

Love,
Kathy

{ 30 comments… read them below or add one }

1 JuliaS April 9, 2008 at 8:23 pm

Prayers and continued wishes for strength, peace and comfort for the days ahead.

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2 kellg April 9, 2008 at 8:26 pm

Kathy:

We’ll be thinking of you guys. May the Lord hold you all and your time with your little girl be blessed.

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3 SommerNyte April 9, 2008 at 9:07 pm

My heart breaks for you, Kathy. I do hope that you get a chance to hold Molly while she is alive, and shower her in all of your love as she so deserves. Don’t forget about “Now I Lay Me Down to Sleep” — they take beautiful portraits.

Much love to you.

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4 Nurse Lochia April 9, 2008 at 9:13 pm

You are in my prayers tonight.

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5 alison April 9, 2008 at 10:09 pm

You’re in my thoughts and prayers. Sending some hugs.

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6 Katie April 9, 2008 at 10:59 pm

Oh, Kathy. . . there are no words. Just know that I am here for you. . . from so far away. If there is anything that I can do, please let me know.

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7 Silas Charles Kyne April 9, 2008 at 11:01 pm

Praying for Molly Marie and the rest of your family. May God give you His peace that passes all understanding.
~Tanaya~
http://www.silaskyne.blogspot.com

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8 Annalien April 10, 2008 at 4:50 am

I am so sorry for the latest news. I will pray that your last days with Molly will be blessed and peaceful. May you experience God’s love and peace throughout.

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9 Jen April 10, 2008 at 5:50 am

Kathy, may God Bless you and your family. I will keep all of you in my prayers. Also, I am also in the Chicago area if you’d ever like to talk.

jen

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10 Laura April 10, 2008 at 6:36 am

You all are in my thoughts and prayers.

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11 Anonymous April 10, 2008 at 7:08 am

My heart is so heavy for you. I know how long and awaited Molly was for you and Bob. Many prayers for you, as always.

Angela

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12 Fertilized April 10, 2008 at 8:06 am

Kathy – As always, I am praying for you and your family. I wish there were better words to provide comfort but I hope that the prayers will provide your strength, love and comfort.

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13 Carole April 10, 2008 at 8:22 am

{{Kathy}} Thinking of you during this time and continuing to pray for you and your family.
~Carole

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14 Ashleigh April 10, 2008 at 9:09 am

You and your family are in my prayers. I wish there were more I could do or something I could say to bring you comfort.

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15 T-girl April 10, 2008 at 9:16 am

Kathy, you are an amazing woman and Molly couldn’t have had a better family.

As always you are in my thoughts and prayers.

A huge hug for all of you.

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16 Kristie April 10, 2008 at 10:26 am

I posted last night….anyhow I am think of you and your family. I have been dreading this post and hoped it wouldn’t come.

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17 Polka Dot April 10, 2008 at 10:44 am

My heart aches at what you’re facing and going through. My thoughts and prayers will continue to be with your family.

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18 loribeth April 10, 2008 at 1:21 pm

(((hugs))) No parent should ever have to experience this. I hope whatever time you get to spend with your daughter will bring you some comfort. I will be thinking of you.

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19 10yrstillhoping April 10, 2008 at 1:31 pm

Kathy,

You and Bob and Molly are in my prayers more then you will ever know. There are not words to express how sad I am at this news. I hope Molly’s delivery is as peace-filled as her mommy’s heart! She is a lucky little girl to have you!

Carolyn, IVFC buddy

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20 JJ April 10, 2008 at 1:38 pm

Sending prayers for you and your family–Im so sorry, Kathy.

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21 Kirsti April 10, 2008 at 1:41 pm

Oh Kathy I am so sorry ((HUGS)) Please know you and your family are in my thoughts!

Kirsti

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22 STE April 10, 2008 at 1:42 pm

You are in my thoughts. I’m so sorry for ths struggle.

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23 Kymberli April 10, 2008 at 2:55 pm

I am thinking of you and holding you and your family in my prayers.

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24 Tash April 10, 2008 at 2:57 pm

Here from Stirrup Queen’s — just wanted to express how incredibly sorry I am for you, Molly, and your family. I’m holding you all in my heart.

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25 Ellen April 10, 2008 at 3:11 pm

I wish I was there to give you a big hug. I hope you are able to make the most of your time with Molly. You and your family are in my thoughts and prayers. love, Ellen

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26 Michell April 10, 2008 at 4:02 pm

I’m so very sorry. I wish you much peace and comfort in the coming days.

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27 April April 9, 2013 at 7:16 pm

Sending you hugs and love from the future, Kathy. I’m so glad you had the time on earth with Molly that you did.
April recently posted..G is for GlassesMy Profile

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28 Justine April 9, 2013 at 7:48 pm

Even as I read this entry, I am struck by your strength … and especially touched at the way you explained everything to Sean. Sometimes I think that the greatest truths of our heart are spoken when we tell things to children, who need to hear them in terms they can understand. I’m glad that your family was so close during this time, and that your MIL was with you to support you and to make you feel less alone, even though Bob could not physically be there.

You are an amazing woman, Kathy, and Molly’s life was a gift and a blessing that continues to have an impact today on so many people.
Justine recently posted..On (Not) Giving Enough, and Yukon Gold Potato SoupMy Profile

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29 Amy April 9, 2013 at 8:45 pm

Kathy, Here from the future typing through flowing tears. I honestly think I can feel your heart break as I read of your hope to have a few moments with Molly to hold her in your arms to take her last breath and be with God. A pain no one should ever experience or have as their best option, yet you show such grace and faith. Molly is truly an Angel who has done great things for others because she blessed your life. Without Molly, Madeline’s Mommy would not have found such strength, understanding and support. God Bless you, Molly’s Mommy!

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30 lostintranslation April 10, 2013 at 1:41 pm

Here from the future via Time Warp Tuesday. Oh, I cannot even imagine how difficult that those weeks before Molly’s birth must have been for you. I’m so glad though that you were able to spend some time with her before she passed away. I also love how you included Sean in everything (the image you used to have in your blog header of him holding her is so powerful). (((hugs)))

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