Protein S Deficiency OR How my body is still trying to ruin things…

On Thursday, I had my anatomy scan with Dr.F, and all looked well. She was able to better explain to us the cause of Kenley’s death. It was officially decided that she died from blood clots in her umbilical cord. We sort of knew this, but as I’ve said before, when we were first told about the cause of her death we were VERY fresh in our grief. I was better able to understand it now, at almost 11 months out.

When she told us about the cause of her death, she then went on to tell us that she thinks we should have a few blood tests done to see if I have a clotting disorder. Ultimately she went back and forth with herself about it, but she decided that we should have it done. I was very happy she decided to run them on us; we have 100% maternity coverage, and 100% lab work coverage so I wanted to get them done no matter what.

Fast forward to Friday morning. I received 2 lab results back into my patient portal. (Side note- patient portal is AMAZING. I love that I can see everything about my chart in there, but man…When the labs come back and I see them possibly before my doctor I can drive my mind crazy with googling the information!) One came back ok, and one was flagged as elevated. I emailed the doctor and didn’t hear back until Monday. She told me they were ok, and the elevated one was considered normal for pregnancy; She said we were waiting on a few more results, and she would get ahold of me when they came in.

I tried to relax, but…about 11am BAM! in comes another result. It’s flagged. It’s EXTREMELY low. I googled…Not good news.

It was the results for the Protein S Activity test. The normal range was 50-168% activity , and mine was <10% activity- Even without googling I can tell that is not good news. After I looked into it more, it turns out it is called Protein S Deficiency and it’s a pretty big deal when you’re pregnant, BUT the treatment is an injectable blood thinner and the outcome seems pretty positive as long as it’s caught. I’ve of course been looking into this disorder and it’s contribution to miscarriage/stillbirth/clots in the placenta and cord. I have found a lot of women posting that they have this blood clotting disorder and have been told it’s the cause for their child’s death.

Around 4:30 Dr.F called me, and she told me she had new results (not new, already saw them at 11am!) to discuss with me. She repeated that the test is controversial within the medical community, but the general consensus is that during pregnancy, your protein S activity should’t be less than 30%– If you remember, mine was less than 10%.

She said that I need to start an injectable blood thinner (Lovenox) right away and continue until delivery @ 37 weeks. I will also need to start them up after birth until 6 weeks postpartum. While I’m extremely thankful we caught this so soon, I’m bummed I have to take a shot for the next 18 weeks (+6 PP).  She said that nothing should change as far as delivery date (I’m still waiting for another test result, so I don’t know if this could change), and that I will be monitored extremely close.

So that’s what my last few days have been like; Stress on top of more stress.

I want to do everything that I can to keep this sweet baby safe, and if that means taking shots every day for the next few months, I say bring it on. She is so wanted, and I will do everything in my power to make sure she gets here safe. Come on little girl, we got this. I can’t go through losing another child…I just can’t do it.

••••••••••

I’ve been looking more into what I would like to place in the bags I’m trying to get together. I have a pretty good idea of what will be inside of them, now comes the task of buying everything. I have a good idea of how I’m going to be paying for certain things, but I’ve also had a good friend offer to purchase items for the bags, and I’m working with a candle company to get a special candle to include as well. I’m so thankful for all the people I’ve met on this journey. I need to get a plan together so I can start getting them put together. I was on amazon the other day shopping for a few things, so I have a good idea of the cost.  I would like to include a list of places where I have found support, and hope; websites, and things like that. I had no idea what to do after we lost Kenley, I was lost in my own grief and couldn’t see the future let alone seeking help.

I am also trying to think of a way to get a sticker made for the front of the bags, and possibly a “donated in memory of” sticker for the books. If you know of anyone who is a graphic designer and think they would be willing to work with me to design something, let me know.

I need to email the coordinator of the Hospital and try to get something set up. Shane and I both agree that we don’t want to go back to the Hospital. It will be too hard. We have purchased photos in memory of Kenley that they are holding there for us until we are ready to come see them hung up. I think that I would rather have them hung up without us there, and then go see them. I don’t know that I could handle seeing them be put up, have the chaplain say some words and see all the nurses etc…I just don’t know that I want to deal with those emotions right now. I, also, would like to only make ONE trip up there, if I have to make one at all. This is why I am trying to get all of the items gathered to donate, and I guess I need to let the coordinator know my thought process.

I wish life didn’t have to be so complicated. I wish I was sitting here playing with my almost 11 month old daughter. I miss her so much…

••••••••••

On that note, I was talking to Shane a few days ago and I told him I was having a really bad day. He asked me why, and I had to stop and think about it. Most days, it’s the normal sadness and grief that I feel from losing her. But, on Saturday, it was different.

I felt sad because I feel like I don’t know her anymore. I feel so far away from her; so far from out from her birth. So far away from the day I thought I was going to have the best day, but it turned out to be the worst day (and one of the best days all in the same fucked up way because I got to meet my daughter finally).

It makes me sad to think that I won’t get to know her as a little person. I won’t get to know what she likes to eat, or if she has a favorite book. I won’t get to see what color her hair is now, or to see those beautiful brown eyes (yes, she had brown eyes! She was a special little girl)

As the Holiday’s approach, I am feeling myself torn in multiple directions. I want to curl up in a ball and ignore them, which I can’t because of Landon. I want to go on a vacation somewhere thats warm and relaxing and just pretend it’s a relaxing trip. I want it to go away, so I don’t have to stare it in the face every day.

Some people have said to me, “You shouldn’t be sad about Christmas, she didn’t die on Christmas, it was after”. Yeah, true, but do you realize how closely correlated those days are? From my point of view, last year the Holidays meant that it was TIME. It was time to meet my girl, to enjoy these last few holidays with Landon as the only child, and to finally bring home my most wanted girl. Instead, this Holiday season, while I should be dressing her in cute clothes, and buying her every toy under the sun, I will be without my love. I will be looking for a Fox stocking to get her name embroidered on. Something, ANYTHING, to make her presence known. I don’t know how to do that; how to hold space in my heart for her during our family gatherings that will undoubtedly be filled with noise, and commotion that will make me preoccupied.

I wish that I could be excited for Landon’s Christmas, and I’m sure I will be once it gets closer and I have no choice, but it’s just going to be so hard.

Everything about the Holiday’s this year is wrong. I’m not holding my girl, because she died. Instead, I’m carrying her little sister inside of me. While this brings me so much joy, my heart still breaks into a thousand pieces when I think of how excited Kenley would have been to tear into some gifts this year.

 

 

 

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4 thoughts on “Protein S Deficiency OR How my body is still trying to ruin things…

  1. Just wanted to say that I am thinking of you and hoping for the best possible outcome for both you and your baby. I know how anxious you must be because I myself feel that anxiety about the future. Just dropping a note that I am sending you the most positive vibes during this journey – grieving your loss and finding hope in the future, xoxo

    Liked by 1 person

  2. thinking of you and Kenley… Also – I’m not technically a graphic designer, but am friends with multiple and am pretty proficient myself in photoshop, I’d love to help design something with you!

    Liked by 1 person

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