Our genetic appointment

So yesterday my husband and I went to our much anticipated genetic appointment . And we didn't have to wait forever to be seen ,because don't you hate having an appointment and being on time and yet you still wait for what seems like an eternity to be called? We were taken in an since I'm a patient (even tho it was a consult not really getting anything done) I was weighed :gasp: I weigh 164lbs and measured but I didn't see how tall I am even tho I believe I am 5'3.  I was looked over for any physical differences( you can just imagine the fun my husband had with this)everything looked good and we started our consult.Any high blood pressure, diabetic etc? Nope, well i had high blood pressure towards the end of my pregnancy with Nathalia but no I am not diabetic. Ever been admitted to a hospital, besides labor? Once for dehydration? Any particular reason besides being outside for a long period of time? Nope. High blood pressure? Nope. Taking any medication? Only birth control.  Is there any family history of any genetic disorder? No, Emmaliese was the first time anyone in our family went through something like this. Got all that out of the way and we started to talk about our reason for being there. Emmaliese. We went over our test result, Emmaliese tested positive for a ABCA3 Surfactant Deficiency which then prompted us to get tested and our test results showed that both my husband and I carrier the gene. We will never know why Emmaliese's case was so severe when other babies who are born with it have milder cases, some even get lung transplants. Our probability with each pregnancy is 1 in 4 that the baby will be affected like Emmaliese a 2 in 4 that the baby will be a carrier but not affected and a 1 in 4 that the baby will be normal (not a carrier and not affected). So we have a 25% chance of having a baby who will be sick. if we do decide to try for another baby we have options of getting tested. I can  tested at 10-12 weeks by Chorionic villus sampling (CVS) or later on with Amniocentesis. We can adopt or do Invitro using our own egg and sperm, but both those options are expensive but would in most cases guarantee a healthy baby. Nathalia has a chance of being a carrier but is not affected. We will do testing for her later on when she is older. This is something that she will need to know when she is ready to start her family. If she is a carrier she of course has the chance of passing it on to her children and will only have a baby affected by this if her husband is also a carrier. We got a lot of information and we have a lot to think about. What would you do?

Easter 2012

Easter this year was very last minute, literally everything came together in about 2 hours or less. But the one thing taht we did have planned was to take Emmaliese her Easter basket early in the morning. The whole family got together and we went to visit our angel and to decorate her grave ( we are still in the process of getting her a headstone) and to take her the two easter baskets. One from her daddy her sister and muslef and the other one from my sister Laura her husband and their baby Isabella. We spent about an hour with her, and it was bittersweet because honestly here we are celebrating easter with our baby girl at her grave when we would have given anything to have her home with us. And to top it all off Emmaliese would have turned 4 months on Easter.Anywho we got some really nice pictures of us spending Easter with her. And after that we had brunch and the started getting things ready like crazy because we had family coming over. We did the usual BBQ and we had the kids open their baskets and while they did that we had other family members hid the eggs for the kids. Nathalia was super excited since she found 54 eggs,she was the top egg finder!!! So all in all Easter sunday was a good day, I managed to only cry a few times. Hope everyone had a good Easter!! *****Warning picture overload coming up******

A close up of Emmaliese's cross all decked out in Easter stuff.

Emmaliese basket, Minnie's tummy smells like chocolate!

My girls baskets.

Nathalia <3

My husband, Nathalia and I.

Nathalia and my beautiful niece Isabella. I love this pic! I know that
Nathalia would have been a great sister!



She found another one!

1 in 4 and 25%

I have been meaning to write this post since last week but for some reason I have been putting it off but since Easter came and went and I have some really nice pictures I thought I should stop being a lazy butt and get to it since I want to share our Easter pictures with you all.

So here goes...As you know in a previous post I told you how we had gotten our test result and had an appointment with a genetic counselor on May 14th and how it felt like forever till that day. Well two things have happened since then (well a lot actually but 2 that have to do with that post) One is that on Friday I got a call telling us that there had been a cancellation and that if we wanted to we could be seen earlier. Of course I said we would take it, so now our appointment is next Monday April 16th....as you can imagine I'm scared, nervous and anxious.....especially since this is the second thing; while reading a blog I came upon a couple who were also dealing with Surfactant Deficiency ABCA3 and they both were carriers just like my husband and I. And they were told that they had a 1 in 4 chance of this mutation happening in every pregnancy. Yup 25%. They have decided to go thru invitro or adoption since sadly they have lost two beautiful babies to this deficiency. So now I'm left wondering what should we do? What will we do? Will our counselor tell us something different? Will we have a higher risk? We have already been blessed with one healthy, beautiful, super intelligent daughter should we just be happy and content with her. Even though she wants another baby brother or sister.And so do I, I want to be someone else mommy! I have been told that if we do decide to try again at 10weeks gestation I can get tested to see if the baby has this mutation or not. But then comes the question if this baby does have it what then? Do I terminate, because honestly am I strong enough to go thru the whole pregnancy and in the end have the same result as with Emmaliese? I think part of me is getting ahead of the situation we still haven't gone to our appointment we don't know what the genetic doctor will tell us. But part of me whats to be prepared. I'm scared to be told that we cant have anymore babies. I will keep you updated on how our appointment went. Wish us good luck!!

Dear God,

Monday thru Friday I get up at 4:15am make and pack my husband his lunch, remind him if he has his keys, cellphone and wallet, before wishing him a good day at work and giving him his see you later kiss. And every Monday thru Friday I stay awake, not able to find sleep and just think about my angel my Emmaliese and everything that my family has gone thru. Usually I look at her pictures and videos that I have of her on my phone and then I listen to Pandora until I fall asleep. But this morning sleep just eluded me...I just couldn't sleep. And out of nowhere I started to cry and and I started talking to God. I told him that I accepted his plan,that he only gives you what you can handle. And that I hope I can handle what he has put in my path. That I accepted that he needed my angel, that it doesn't make me feel any better about having to say goodbye to her but that I accept it. And that I hope that one day I will stop asking WHY?Why me? Did I do something to deserve this? Was I such a bad person? Why didn't he listen to my prayers and  to take me. That both Emmaliese and Nathalia would still have a wonderful father and a great family and support system to take care of them. Why do this to my family? To my husband? who has always been such a wonderful person, son, brother,husband and especially a wonderful father. He loves his girls so much!! And would do anything for them! And why leave my princess Nathalia with the illusion, the wanting, to be a big sister. I know she is a big sister, that she loves Emmaliese but it breaks my heart to hear her say to us I miss my sister. This past Saturday on our way home from dinner, she asked us why her sister had to be and angel forever, That she wanted her sister to stop being an angel and to just be her sister. This is when I ask God WHY? Nathalia did nothing to deserve this pain, this loneliness. I tried my best to explain to her that once you become an angel you are an angel forever, but that Emmaliese would always be her sister and would always be with her. And that maybe in the future we would have another baby. And I was at a loss for words when she said, But mami what if this baby becomes and angel too and I don't get to be a sister again. I hope I get my answer. I hope, I wish and I pray that I will get the answer to the WHY and that even if I don't get the answer to the why, that I will at least be able to understand. Understand what I don't really know. But God please don't let go of my hand thru this journey that you have for me and my loved ones. Because they are now a part of this as well. And please God let Nathalia know the feeling of being a big sister, to actually protect, teach and be there for her brother or sister just like she was there for Emmaliese but this time for a long long long long time. I don't hate you God, and I accept your will at this exact moment I don't understand it because I don't know what the future holds for me, I don't know why I had to loose my daughter for...I can't really see in front of me for longer than a day or two. But I have faith, family and an angel to help me.

 I love and miss you Emmaliese and I hope, wish and pray with all my heart that heaven is exactly what we all think it is. You deserve that and so much more. May you always be happy and smile that beautiful smile that you blessed us with. You are loved always and never forgotten. Te amo con todo mi ser porque tu eres y siempre sereas parte de mi.

Dreams and Fear

During  Emmaliese's stay in the NICU and since her passing I have only dreamed about her 3 times. I wish that number was bigger.
The first time I dreamed about her was the night before we were going to say goodbye. For a few days before that night I kept telling my husband I keep having the same dream I just can't remember what it is. Well the night before I had the same dream and this time I remembered it clearly. It was my baby girl and she was happy!!! We were at a park and it was a beautiful day, sunny and warm with a light breeze and there were flowers nearby. I has holding her and she kept trying to play with my hair. I remember that my mom was with me and that we both couldn't stop smiling at her. I kept staring at her and even in my dream I knew that I wouldn't be able to keep her but that she was happy, healthy and in no pain. I remember very clearly her face. She had these big rosy cheeks and you could even see the happiness in her big beautiful eyes. For some reason I put her down and she sat up and was playing with her toys and laughing. And that's when I woke up. I woke my husband up and I told him about it and he said to me, that's her way of letting you know that she's okay and that she loves you very much.That she knows that we have to let her go. The next time I dreamed about her it was the night before her funeral service, my sister was nice enough and I can never tell her how grateful I am that she took care of all the arrangements for me. So I had no idea what what her little coffin would look like or what the flowers would look like. But I dreamed about all our family and friends gathering to show her how much she was loved and how much we love her. I clearly saw flowers on each sided of her coffin but I just couldn't see her coffin. The day of her funeral it was exactly like I had dreamed it, and as soon as I walked in the funeral home and saw her little white coffin I broke down and cried. My little girl, my Emmaliese was in there all dressed up. During her whole stay in the NICU she was only in a diaper I refused to let her go undressed. I don't have pictures of her in her last outfit and I didn't see her in her coffin or in her last outfit, I didn't think I was strong enough and to be honest I didn't want my last memory of her to be of her in her coffin or of her little body not the way I saw it last.Once again I told my husband that I had dreamed this day exactly like this. He just smiled and gave me a kiss. And the last time I dreamed of her was a couple of days ago, she was now bigger and still beautiful. Her hair had grown but she still had her pink bow on. And she would look at me and smile and when I said I love you so much Emmaliese and miss you like you have no idea, she laughed, waved, blew me a kiss and started to drift away. I told my husband about this dream too and he said that my dreams of her are her way of telling us that she's okay and that she knows we did all that we could for her. I hope that I will always be able to dream about her.

Emmaliese outfit. her grandpa, my dad made her the blanket
and the dolly was given to her my grandma, my mom. The bracelet
was given to her by Nurse Jackie and LPCH,
Nathalia and I also have matching ones.

Loved my so many.

Lately I have been having this tremendous fear of losing Nathalia. Dropping her off at Pre-school is like a mini panic attack. When I kiss her goodbye I want to hold on to her and never let go.What if something happens and I lose her? What if theres an accident and she gets hurt? What if someone takes her? I don't know where all these thoughts come from but I have been tempted so many times to keep her home with me. Maybe its because lately I have been missing Emmaliese more and so has she. For the past week Nathalia was told her daddy and myself that she misses Emmaliese so much. That she knows her sister is with her watching over her because she's her angel but that she wishes she would have her sister here with her to play with and to kiss her. Nathalia has been my anchor thru all this. She is what keeps me going and what makes me get up every morning. I honestly don't know what I would do without her. Or what would happen if I loose her. I have been blessed with two wonderful, amazing daughters. Emmaliese taught me to be brave and strong to see the beauty in everything.

Making cupcakes.She loves to bake.

Nathalia has taught me to keep going, to do the unexpected, to enjoy life. To just be.  Hopefully this fear will go away I want to enjoy every second of everyday with my family.

My Anchor

A few post in one

 My meeting with the support group went really well. It was nice to talk to someone who understands your feelings. And to just let the tears fall! Looing forward to the next one.

Yesterday Emmaliese would have turned 3 months and as more time passes I miss her more and more. Probably because at 3 months she would have been doing more things. We would have been able to see her being more active, starting to babble and make noises. We would have been taking her 3month pictures and also some family ones. I would have been recording her milestone  and as crazy as it sounds I would already be looking at ideas for her 1st Birthday. I can picture her chubby cheeks and all. With her head full of hair and with her bows. And those big beautiful eyes that were always looking at her surroundings. I can still feel her little hand holding my finger and holding on tight. I still ask Why? Why us? Did we do something so bad that we had to loose our little girl? It's not fair!!!! Not just to us but to her....she didnt get to expierence crawling, her first step. We didnt get to hear her call us Mama and Papa. She won't know what it feel like to walk on grass, to see and hear the beach, She wont get to taste her birthday cake. I guess if we look at the other side she wont know what pain is, she won't have any scraped knees, or be afraid of the dark, she wont know heartache. I know that she's in heaven and has everything she needs.I just wished that we had her with us. I love and miss you sooo much my munch-chicken.

Yesterday I also recievd a call from the genetics doctor, our test results are in. He didn't really explain them to us just said that both my husband and I both carry one gene of the Surfactant Deficiency and that as we had known Emmaliese got two of them and that is why she had the dificency. we have an appointment with him in May. Can you believe it?! we have to wait till May to actually know exactly what that means and get a full and complete explaination of the results! UGH!!! It felt like forever to get the results(even tho we got them soooner then we expected) And May is still so far away. But what else can we do but wait.

I'll take that as a sign.....

Today I recieved a call from my church asking if I would like to meet with a few mommies who in the past few days have gone thru the same sad, life changing situation that I have gone thru, they now have angel babies as well. I have always liked to help people and I am so thankful for this opportunity to help other mommies cope and go thru all the emotions and stages of grief. It has really helped me to talk about Emmaliese and to give everyone the chance to get to know such an incredible strong brave beautiful spirit. In my last post I wrote that I wanted to make both my daughters proud and when I got this call, it was like a sign telling me that I was on the right path in doing that. I want to help others who feel lost and hopeless find the beauty in everything. I want them to look at the memories that they have of their babies and for that to do what Emmaliese's memory did to me, she helped me find the beauty in everything! Ill keep you all updated.