"... These words are my diary, screaming out loud. And I know that you'll use them however you want to..."

Sunday, March 28, 2010

Walking in Kherrington's memory.

My husband and I have decided to continue with our "original plan" and participate in the Great Strides walk for Cystic Fibrosis in support of the Canadian Cystic Fibrosis Foundation on May 30th.

While I was pregnant, I had said that I was going to walk with Kherrington. We were going to walk even if she didn't have CF. We were going to walk for all of the families who deal with this recessive genetic disease. Now, I will walk for her, for me, for my husband, and of course, for all the families too. This day will be another landmark in our healing process. I know she will be there in spirit, along with all the other angels who have gone before her.

If you can, please sponsor me, or anyone who is participating in this fundraiser in your area. Lets help the foundation, so that one day CF can stand for Cure Found!

You can sponsor me by clicking here.

Saturday, March 27, 2010

Everyday, you save my life.

I heard this song yesterday. I knew it well before our loss, but now, it takes on a whole new meaning. It immediately made me think of my girl, Iris (from over at My life in purple). The first line hit my ear, and made me think of her.
"You could have bowed out gracefully, but you didn't". That is so true, she could have bowed out of coaching us through the birth and I wouldn't have blamed her one bit for it, but she didn't. I'm so glad she didn't.
"Sometimes I don't know if I'm coming or going. But you always say something without even knowing. That I'm hanging on to your words with all of my might, and its alright. I'm alright, for one more night." This one applies to her, and our phone calls or e-mail sessions. This line also applies to my husband. He has been just amazing through all of this. I am so proud of him, and what he is doing. Love you...

Rascal Flatts- Every day

Wednesday, March 24, 2010

Answers received

I realized the other day that it has been quite a while since my last update. Honestly, I haven't had a lot to say, and there really hasn't been any developments to speak of, until last week.

Last Thursday, we met with the specialist who followed Kherrington during the pregnancy, to discuss the results of all the testing and the autopsy. I went into this meeting hoping for answers, but realizing that in cases of still birth, answers don't always come. Here is what she had to tell us:

- My blood work (they had taken 15 vials out blood and tested for everything; they called it a "tox-screen") came back O.K. I didn't have any infections, viruses, blood clotting disorders or diabetes that may have affected Kherrington. So that is a VERY good thing. That almost makes me believe that I didn't do anything wrong.

- The amniocentesis revealed that she did have Cystic Fibrosis. We knew this was a VERY likely possibility and I would have been surprised if the results showed that she didn't have CF. There were no other genetic or chromosomal issues discovered. So, this means that other than the CF, she was healthy as far as genetics and chromosomes go. Also, this tells us that there are no reasons to not have any further children since we have come to accept that we have a 25% chance that the next pregnancy will result in a baby with CF.

- The autopsy results are "preliminary", meaning they just reported what they could see when they opened her up. The "final" results could take another 6 months. When the doctor said this, she looked at us and said "I hope you're pregnant by then". The autopsy found that she had a "Volvulus" obstruction in her bowel. This means that the bowel tied itself off like a bow tie or a sausage link. Usually, this does not cause intra-uterine death, but the specialist told us that it could have caused a hemorrhage, or oxygen deprivation that may have caused her heart to stop beating. This was a bit of a surprise for us. We knew her bowels were blocked, but I was of the impression that they were blocked with meconium (poop), which in babies with CF is very hard and difficult to pass and could result in an obstruction. This was not the case. The volvulus is not necessarily caused by CF, and she made it seem like this was just an unfortunate coincidence.

- She reassured us that next time would be different. Next time, she will see me at 12 weeks gestation, and follow me at regular intervals until 30 weeks. At 30 weeks I will probably start seeing her every week. We asked her when it would be O.K to try again. We had heard that we should wait a year or two to allow my body to recover. She responded:

"No! Don't wait! You're body should be fully recovered now, and whenever you're ready, go ahead and try again. We suggest that you wait 2-3 cycles to allow for better dating of the pregnancy. But I will see you at 12 weeks, so waiting really won't affect the dating. Don't wait, you only get older, and age makes it harder and can bring other complications. Whenever you're ready go ahead, but don't wait."

What a relief it was to hear this! We know that we can't replace Kherrington. She is, and will always be, our first born. Other children will know that they have a big sister. But going into this meeting, I was really hoping that she wouldn't turn to me and say "don't have any more kids". I feel almost like I have a point to prove now. I carried Kherrington to 36 weeks + 5 days, and in my mind there is NO reason why I can't have another baby and actually have it survive.

She then went on to tell me that "I didn't do anything wrong". This immediately brought me to tears. It is hard to describe this to others, and I believe it is my right as her mother to blame myself. I have been trying to figure out what it is that I did wrong. I told the specialist, that I have often wondered if I didn't eat properly, or if it was all the exercise, or the stress from work, the organizing I did around the house, keeping a fire going, scooping cat litter (we have indoor cats and I used gloves and a mask), or that time I cleaned the bathroom. This list is never ending and I could go on and on. She said "No, none of that caused any of this."

The womb is supposed to be the safest place for a baby, but it is far from it. When a baby's heart stops after it is born, they can give it CPR and defibrillation to try to bring it back. When the heart stops in utero, nothing can be done. This has been the hardest thing for me to accept. I now look at myself as anything but safe. The fact that any baby can survive past conception is a miracle. At least I know that Kherrington wasn't filled full of tubes and had painful surgery, or suffered needlessly, to end up with the same result. Thankfully, she was never alone.

I met this past Monday with my physician for a checkup. When discussing future pregnancies, she said the same thing,"no need to wait". Then she sent me for blood work to have all of my "levels" checked. The prominent theme of "don't wait" is very reassuring, and terrifying at the same time. We'll see what the next few months bring. Neither one of us want to wait, but part of us feels like we should. For Kheri's sake. But, I would like to think she would like us to move on, and give her a brother or sister. I would like to think that she would want us to stop tormenting ourselves, and be happy.

Tuesday, March 16, 2010

A "Touching Tuesday"

I have been experiencing a "writers block" lately, but now, I have at least two things to write about.

It was brought to my attention this week, that I had received an award. I am an "Inspiring Blogger" thanks to the award I received from my BFF over at My Life In Purple. Through Iris's post, I discovered that this award was created by Valerie at Next to Heaven. The idea of being an inspiration to others is incomprehensible to me right now. Only because I have days where I seek inspiration myself just to get up and moving, or to go to the grocery store, never mind providing it to others. I am just trying to get through every day, with my sanity intact. If it makes any sense, the fact that I am seen as an inspiration to others, is an inspiration for me. Thanks for the award.

Then, I picked up this BFF from work and we had lunch. She had told me in an earlier e-mail exchange that she had something for me, and of course, I just had to find out what it was. I received a beautiful necklace from lovely Valerie at Next to Heaven and Spunk & Sass Designs. It is personalized with my daughter's initials "KFG", stamped on the pendant. She also sent a card with a fitting quote written inside. Thanks Valerie! It hit me hard on my way home, that Valerie doesn't even really know me, yet she has let me know she cares, by sending her thoughts through comments, cards and this lovely necklace. It is so touching to know she cares.

Saturday, March 6, 2010

A Month has passed, and today we pause to remember

A month ago today, our daughter Kherrington was "born still". It is hard to believe that a month has passed already. In some ways it feels like it just happened yesterday, and in others it feels like years have passed. Today, we are having a memorial service for her. We know that we will feel relief when it is over, since it is the final "physical" step of this process. Now, we just need to find a consistent "new normal"...