Where do I even start? This is the first time I have ever done anything like this, and trust me, I'm a rambler so this may take a while. My Avarey Grace is coming Feb 8th or 9th of 2012 and I couldn't be more excited and scared. My Fiancee, Kevin, and I first found out about Avarey's CDH on Sept 9th 2011. Let me tell you, there is nothing like seeing your first baby for the first time, then being told it's a GIRL , and then being told there may be a problem. Talk about something to bring you down. You spend the moment from the first time you find out your pregnant until the BIG ultrasound day imagining how your baby is going to look and what it is going to be, and then all of that is forgetten given a few simple words. It truly crushes your heart. Kevin and I had not heard of CDH until that faithful day and since then my whole world has been upside down. Avarey has left sided cdh and only her stomach and part of her intestines are up in her chest. Her heart is pushed all the way to the right, but it is full size, beating correctly, and pumping blood great! We have been told by doctor's that we have "the best case" for a "life threatening" birth defect. Being CDH parents we all know this still does not mean she will make it. I find that trying to explain it to people is one of the hardest parts. You never want to tell someone that you are having an unhealthy baby, and then further on trying to explain exactly what is wrong complicates things. As great as it is to hear "Oh babies make it all the time, babies that are born 3 months premature live to have perfectly healthy lives..."so on and so on. Or even worse, "Oh it's a simple surgery, babies are fighters, they always come out on top. She'll be just fine." No It's not OK, no it's not that simple. There are 1,000,000 things that could wrong, and the surgery is the least of the complications, she has to be able to breath in the first place. But people who are not CDH parents are supporters just don't get it. I know they mean well, but it's just not that easy. Or maybe this venting is just all the built up resentment.... I try to so hard to stay positive and i try so hard not to be angry, but it is nowhere near easy. Never in my life have I known what true heartache is till now. Never in my life have I ever cried to the point it hurts, and now it seems to happen day in and day out. I am finally moving forward somewhat, the mornings aren't as sad and the days don't seem as long. I know she still has a chance, but there is also that chance of what if. What if my angel doesn't make it, what if I decorate a nursery and no sweet baby girl to bring home to it, what do i do with all the cute pink baby clothes and the christening gown and her blankies? How do I ever move on? My support group from home is great, I could not ask for a better fiancee or grandparents for Avarey, but sometimes they don't can't quite get it. I'm her mommy, I'm suppose to keep her here, and what if I fail at that? Avarey's due date is fast approaching, as I much as I cannot wait to see her pretty little face and hold her tiny little fingers, I want to keep her inside as long as I can, that way I know she's safe. But until till I guess it's doctor appointments every week and a BPP test on Monday the 5th! (Prayers for that are more than welcome) And in the time being I'll enjoy every last kick,flip, and turn she makes and every last ultrasound screen I get to see her pretty face through! May God Bless each and every one of you!
Mommy Loves you Angel Avarey <3
I can ask that maybe I dont understand the CDH thing but I do understand the heartache of not knowing if your baby will be born heathly or not or hearing there is a problem andnot knowing what to do.. I will pray for you and Avarey and Kevin along with the doctors and family. I will be here to give to praise and laugh with you and even let you cry and vent to me all you have to do is ask.. I can say that you are a strong person and doing the best thing for your baby and I can say that GOD will carry you along with the family I know that. You know my phone number if you need me. I also feel in my heart that you are a strong MOMMY because you are the right thing by dont letting go of her you choose life for her. Please donttake that the wrong way. I'm pround of you and know that you are going to make a GREAT mommy soon. PLease let me know if I can help you.. Love Patricia Whitman and family
ReplyDeleteawh Leighanne, you make my heartache. As a mommy I cannot imagine not being able to bring Emma home with me, just the thought makes me ache. I will keep you and Avarey in my prayers, and I pray that you will get to bring your baby home to that nursery and hold her and love her everyday. I know God puts us through awfully hard and not such understandable trials sometimes, but you have just got to keep trusting and praying. Let me know if you need anything at all. I love you girl. Always, Rikki Lynn
ReplyDeleteMy sweet girl also has a L-CDH with stomach and intestine up (ultimately also spleen).. We too heard that we were in a better scenario many times but with that caveat - but you never know since each baby is different. I would try to explain to friends that the issue isn't the CDH - it will be the pulmonary hypertension that comes along with it after birth which is the big scary unknown. How quickly it goes away and how severe it is, is the big factor. So that, along with lung growth was a big thing I (and many others) prayed for every day. We fought that beast of PH for 17 days and then like the clouds lifting - she started making radical improvements. After surgery - where they didn't think she had much left lung - they found a good deal. And today, looking at an Xray - you wouldn't know she had CDH..... if you didn't notice the large number of clips and gortex inside her. :-) I will be praying for you and sweet Avarey (love the name). You've got a lot of support from us mamas who have walked this road before you. I am here for you.
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Liz