HPE Awareness Week & Remembering Chloe's Diagnosis

Holoprosencephaly is a big, confusion, hard to say, medical term that in all my years I had never heard until we were pregnant with Chloe.   Holoprosencephaly (HPE, once known as arhinencephaly) is a cephalic disorder in which the prosencephalon (the forebrain of the embryo) fails to develop into two hemispheres.   In some cases it can be a genetically caused disorder, but in Chloe's case, and other babies, as many Dr's put to us "it was a lightening strike of bad luck".  Meaning there's no reason why her brain didn't develop properly, it just happened. 

I remember being angry, confused, and just all around pissed at the world when we found out something was wrong with our Chloe, and it took me a while to come to terms with the fact that our first daughter wouldn't be coming home with us. 

We first thought she had cysts on her brain at 16 wks, and we knew something was wrong, but it wasn't until we were around 18 wks when we saw one of the high risk Dr's that he gave us a more of an idea diagnosis of what Chloe could possibly have.  I remember that day being so mad, I thought we had done everything right.  I recall having to take Chris to work after the appt and just being so hurt, and mad at the world.  Why did something like this happen to us, and to our daughter.  I had been so angry for those 2 wks, that I think it was that afternoon that I was finally done feeling that way.  I remember texting Chris while he was at work and telling him I wanted to give her a name, I was done feeling angry about her condition, and I wanted to do everything we could to make the most of the time we had with her.  Even though we knew we would still have tough days, from that day forward we let it all go and just let God take everything.  Which I know we should of done from the beginning but when your put into a situation like ours, or any tough situation, it hard to just let it all go and not be angry in the beginning.   I think it was that same day that we decided to make this blog, which had def been therapeutic for us, and I pray helpful for others.  We went to Dallas at 20 wks, for the fetal MRI where Dr Twickler had given us the for sure diagnosis that is was HPE, and I remember her asking us what our Dr's thought Chloe could have, and she was very impressed with what information we knew.  She had determined that Chloe's brain didn't develop, or divide, she had a primitive brain, meaning a sack filled with spinal fluid, a little of her brain stem, and cerebellum had developed, but that was it.  All of her movements were reflexive movements due to the brain stem, Chloe didn't know she was making the movements. 

Chris: it, as was said numerous times, was very tough for us. The empty feeling we felt in our chests was just the tip of the iceberg. Also as was said, this blog really helped me realize a couple things. One thing that I have come to realize is that writing takes me to a calm place, a place where I forget my problems as I let it out, a happy place if you will. The other is that I actually enjoy writing now. I've never really had an urge to put my thoughts on paper, or online,  for the world to potentially see.

Recently I decided to remove my Chloe bracelet permanently. It oddly was almost as therapeutic as writing on this is. I wore that bracelet every single day, never took it off, since I put it on. It was me holding on to hope that maybe she would somehow defy reality and come home. I say down, rubbed the bracelet, and laid it around her urn. I'll forever have a piece of her with me and I'm okay with it now. I feel changed, I feel almost human again, I feel almost like I did 2 years ago.

Happy 1st Birthday sweet Chloe!!

Little did we know, a year ago today, it would be our first and last time seeing you, or holding you Chloe.  Even though we have pictures to us remember this day, and all the days before,  we still miss you dearly.  I wonder who you would've been if you could of stayed with us, what you would look like, the things you would like.  I am very thankful for the 27 wks that we got to spend with you, even though there were many rough and trying weeks, I wouldn't trade it for the world.  All though you were little, all of 10 inches long, and weighed 10.4 ounces, we know you had the strongest hearts, and are growing so big in heaven.  You made the largest impact on our lives, and will continue to do so in the lives of your siblings.  I pray that you continue to watch over everyone, and am thankful that you have helped to bless us with another little girl that I know will have a little bit of you in her.  I pray that we make you proud everyday, and know that we love you very much.  Till the day we all meet again.  Happy 1st birthday our sweet Chloe!! Mommy and daddy love and miss you so very much!!

Chris:

In the last blog post I decided to release some of my pent up aggression and after it was all said and done I felt real good. It's weird that posting in something like this would have an affect on me. That being said I have decided that it would be in my best interest to keep doing so. 

I'll start off with some sad notes, but will end it the best way I know how. 

I'm sorry Chloe that I couldn't fix what was going on. I was powerless in this and I often feel like I let you down. I know you're up there with Great Granny and PawPaw hanging out and watching over our entire family. 

I was being selfish after you passed away, I kept thinking 'I lost my daughter, why my daughter?, why me?'. I couldn't help it. That day I lost a huge piece of me and I was devastated about it. It wasn't until I was talking to my best friend that I realized how selfish I had become. He had gone through a very rough patch which still haunts him to this day. (which is completely understandable) I couldn't imagine the pain of losing a parent suddenly. I remember looking at him and telling him 'it wasn't just you that lost someone, your dad lost someone, your sister lost someone, everyone she ever came in contact lost a special person.' It wasn't until after I said that, that I realized Chloe wasn't just Lindsay and my baby. It was my mom and dads first grandbaby, my sisters first niece, my mother-in-laws 8th grandbaby, and a new niece/cousin for the litter. 

Another thing that we talked about was the fact that as the 'rule' states, is that you are supposed to bury your parents, not your children. I've heard that saying in the past, but never did I ever think it would apply to me. I know that at some point I will have to bury my mom and dad (God willing, not for many many years from now), but never did I think I would ever have to attend a memorial service for my offspring. 

I remember at the memorial service, the sheer amount of people that showed up. For a little girl, who never graced this earth with her presence, to have a flock of people show up was amazing. For the first time during this whole situation I finally felt and saw what true love and friendship was all about. None of the people that showed up had to, yet they did out of the kindness in their heart. Two nurses from our doctor in Odessa even made the trip which I would've never anticipated. It was great seeing the balloons hit the sky in that iconic heart shape. It was almost like a final goodbye and 'I love you' from that sweet angel in the sky. 

On a lighter note now. This pregnancy has been extremely fun and adventurous to say the least. Everything from the stereotypical morning sickness to the fact that she can't handle chicken cause it's slippery (which for some unknown reason makes her gag) is hilarious. This pregnancy (just like with Chloe) has brought us a lot closer together and our love for each other is greater than I could of ever imagined. Our relationships with our friends also seems stronger as well. It's crazy what a death and pregnancy can do to people. 

I personally wanted to say a big Thank You to anyone that reads this and to everyone that has been a part of our lives, whether it was from the beginning or not. Our friends really helped us through a very rough patch in our lives and there is no way we could ever repay that debt. 

'Let go and let God'

Happy Birthday baby girl! I love you!!

"Still"

"Lost you before we met you, Gone before you came, But we love you just the same.  Missed you before we met you, On earth we never can, But in heaven we'll meet again..."

-"Still" by Gerrit Hofsink

I have had this post saved as a draft since May 16th, but I hope that everyone had a wonderful Mother's Day 2013 this year.  Being my first Mother's Day, it was very nice, and Christopher and all of our family def helped. 

Something that I have noticed here recently is how many other families have lost children, wether its from miscarriage, pregnancy loss, neonatal death, or any other situation.  I have friends who have lost children, (I had a friend pass away while in 8th grade, and I've attended a funeral for a friends child), but I guess until you experience something of that magnitude you don't really realize how many others that are out there who have been through a similar situation.  I believe I had wrote this in a past entry about how I received many messages and things like that before and after Chloe passed from others who lost a child, and it def comforted us.  At the time with everything happening its hard to not think that you are alone in the situation, and to have others reach out it def helps.  I guess when you hear someone is pregnant you don't think that something could go wrong, or that something is wrong.  You just kind of automatically think that everything is fine, and that baby will be coming around there due date.  Something Chris and I heard a lot and still a little now is that people don't know what to say, which I can understand.  Yes we are sad about what happened with Chloe, but its okay to ask how we're doing, to talk about her, say sorry for what happened, or anything like that, and I think that's with anyone who's been through loosing someone.  Also for me it helps to hear others situations, because it shows that you're not alone, now I can't say that others would want that.

Chris and I have been doing better, we have each other, amazing family and friends, and we know that Chloe is always with us, helping us get though it all.  I get asked from time to time if we are going to try again, and for anyone who doesn't know that answer, yes we are.  Chris and I have talked about when we would want to, and we both agree that we just want it to happen, and not really plan anything, but I know I'm going to probably try to plan it :).  I think maybe in the next few months it may happen, for the simple fact that I had a dream I was pregnant again the other day, and I remember having dreams like that a few months before we found out we were pregnant with Chloe.  But if it doesn't happen right away, that's okay, because I know that's what is suppose to be, and that it will happen when the time is right.  So for all those out there, just please continue to pray for us, we are def appreciative! 

6 wk visit

We went to the Drs yesterday for the 6 wk visit and Dr Martinez said we were doing great, and are role models for others, which is nice to hear! Even though I always say that I'm not that strong, I know that Chris and I are very strong and our love for each other and for Chloe is going to get us through all of this! We know that we gave Chloe the best chance for her to be here with us physically, God just wanted her home sooner then we thought.

I heard something really sweet the other day about my youngest niece Mallory, my sister Mandy had said Mallory's teacher had asked if Chloe had passed because in chapel (she goes to a Christian school) Mallory had said a prayer for Chloe, and said everyday since then she has talked about Chloe. Which I think is so sweet and Mallory said to me "Chloe's Gods baby, she's in heaven with God and Jesus." That just warms my heart, it's so honest and true, and it really shows how pure a child's heart and thoughts are.

As Chris and I were talking yesterday, we were thinking about how many people we have met and who have reached out to us since everything with Chloe happened, and it's really surprised us at how kind others can be. Also how many other families have went through similar situations and have lost a child. It's a very humbling experience to know how many people have been effected or inspired by Chloe's story. Also how great our experience with our Drs have been, I don't think it would of been so easy to get through all of it if it wasn't for Dr Martinez, Dr Fanous and all of their staff. They've all been so great, helpful, and supportive.

Also before I forget, for those who donated for the bracelets, I sent off the donation amount to ABC and we all raised $310. I know some are still donating and once I get those I will be sending off those to them as well! Y'all are amazing!

I also finally got Chloe's foot print and initials tattoo'd by her anchor! Done by Mike at Pachuco Tattoo!