10 Weeks to Go

theatrebek · October 2015

Hey there.
I don't even know if I technically belong on this board, as I am still pregnant. 29 weeks and 4 days. But I don't know where else to go.

Let me tell you our story.
Our LO was originally diagnosed with HLHS, a congenital heart defect where the left side of her heart is so underdeveloped, it would take 3 surgeries to make it so the right side of her heart could adequately to the job of a full heart. On top of this, she was diagnosed with some form of skeletal dysplasia, more specifically a form of short rib dysplasia (which we have not identified at the time).
We've been monitored heavily the past 9 weeks, to watch her chest growth, as well as her heart condition. Up until Friday, we just kept getting best case scenario news.
On Friday we went to the doctors we planned on going to for delivery, as our hometown does not have the ability to surgically care for an infant with HLHS. We went through a fetal MRI, as well as a fetal echo and ultrasound. This was the first fetal MRI I've experienced, and I have mixed feelings about the results.
The ultrasounds we've been through showed no signs that her chest wasn't growing. But the moment we saw the eerily clear picture that the MRI had captured, we knew something was wrong. Not only were her ribs too short, but they weren't wrapping around the way a normal ribcage would. Additionally, her lungs seemed almost smaller than her already half sized heart. They said her lungs were measuring 5 times smaller than the 5th percentile. We were told we had two options. Both included carrying to term (which, we love her so much already, I can't imagine any other way), but one is extreme care which would mean we wouldn't even get a chance to hold her before they rushed her to the NICU for procedures that have barely any chance at saving her life, and the other would be comfort care which would give us anywhere between 5 minutes and 5 hours with our precious little girl, IF she isn't a stillborn.

I feel so alone. My DH of course is by my side, but I feel like I have to be strong and hold him up. We wanted Matilynn Daisy more than anything in the world. And to know 10 weeks before we even get to meet her that we will only know her for a short amount of time somehow holds a sort of darkness along with it. I keep hoping that I'll wake up, or go to my follow up appointment, and find that everything is okay. I keep dreaming that merely holding her in our arms will heal her. Everyone says I am so strong. That they couldn't imagine what I'm going through. But I don't feel strong. I can't even imagine what I'm going through. I haven't gotten out of bed all day, and I can't wrap my head around how much worse it's about to be.

I know a lot of you women are already going through or have gone through this, so I shouldn't feel the way I do, because I haven't actually lost my child yet. But knowing I will, well I just don't know how I should feel.

kistra · October 2015

Hi theatrebek,

I cannot speak for anyone else, but I think this is the right place for you to be. It sounds like you are mourning your daughter and all your hopes and dreams even though she is still alive. Be kind to yourself, do whatever feels right. Make your decision and know that you are making the right decision for Matilynn and your family even if feels like you had no reason to make it.

Does either hospital you have interacted with have a neonatal palliative care program? My hospital had one and the support person associated with that program was amazing and really helped us through everything.

For my story, DH and I found out at 13 weeks that our son Logan had a large cystic hygroma but normal numbers of all his chromosomes. Sometimes these go away by 20 weeks and other times they don't and the outcome is dismal for the ones that are there during the first trimester and do not go away. At 16 and 18 weeks it was still growing larger but I was determined to hope that it could still go away by 20 weeks. Our doctor was very concerned so we got sent to a center than can do fetal MRIs and in-utero surgery and it turned out everything was much worse than they originally thought. At that point my husband and I started doing something stereotypically related to childhood each weekend. We only made it to a zoo and a museum before we lost Logan but the pictures and and momentoes we bought at each place are in his memory box and mean a lot to me.

There is no right way to feel. It is okay to feel however you feel. It is okay to feel sad, it is okay to feel happy, it is okay to feel angry and it is okay to feel hopeful

theatrebek · October 2015

kistra said:

Hi theatrebek,

I cannot speak for anyone else, but I think this is the right place for you to be. It sounds like you are mourning your daughter and all your hopes and dreams even though she is still alive. Be kind to yourself, do whatever feels right. Make your decision and know that you are making the right decision for Matilynn and your family even if feels like you had no reason to make it.

Does either hospital you have interacted with have a neonatal palliative care program? My hospital had one and the support person associated with that program was amazing and really helped us through everything.

For my story, DH and I found out at 13 weeks that our son Logan had a large cystic hygroma but normal numbers of all his chromosomes. Sometimes these go away by 20 weeks and other times they don't and the outcome is dismal for the ones that are there during the first trimester and do not go away. At 16 and 18 weeks it was still growing larger but I was determined to hope that it could still go away by 20 weeks. Our doctor was very concerned so we got sent to a center than can do fetal MRIs and in-utero surgery and it turned out everything was much worse than they originally thought. At that point my husband and I started doing something stereotypically related to childhood each weekend. We only made it to a zoo and a museum before we lost Logan but the pictures and and momentoes we bought at each place are in his memory box and mean a lot to me.

There is no right way to feel. It is okay to feel however you feel. It is okay to feel sad, it is okay to feel happy, it is okay to feel angry and it is okay to feel hopeful

Thank you for this. I am so sorry about your angel. I think that is an amazing idea to do the children thing. It would at least get us out of the house so we aren't moping around our house all day. I'm not sure about the neonatal palliative care program at our hospital, but I will definitely look into it. It's a children's hospital, so I'm sure they have something. Thank you so much. As much as I hate to say it, knowing we aren't the only people to go through this makes it just a little bit easier to digest.

MamaBish · October 2015

I am so sorry you are going through this. You are definitely welcome here! I hope you get as long as you can with your sweet little girl.

I know what you mean about being strong. It's like we don't have any other option.

I don't have much advice since my loss was more sudden, but Take as many pictures as you can or call the Now I Lay Me Down to Sleep organization. They will come take free beautiful photos for you to cherish. Hugs to you!

msunshine123 · October 2015

I am so sorry you are experiencing all of this - we are here for you! Sending hugs and prayers for strength your way. My loss was more sudden and we didn't really get to plan. I would recommend taking pictures, selecting clothes to dress her in, bathe her, get hand and foot molds to make, take a lock of hair and spend as much time as you can holding and loving her. For now take pregnancy photos and even a video of her moving inside you - these are all suggestions and can mean so much later. ((Hugs))

houstongirl77 · October 2015

Hugs to you. This is the right place for you to be. I lost my son at 22 weeks along and I am still devastated. It's been almost 4 months and it's still so hard but do whatever makes you happy. When she's delivered hold her as long as you want to. My time was cut short cause I had to go to the OR for a D and C. You are in the right place.

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