Tuesday, April 17, 2012

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?

Thursday, April 12, 2012

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!

Wednesday, April 11, 2012

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 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!!

Tuesday, March 27, 2012

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.

Thursday, March 15, 2012

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

Friday, March 9, 2012

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.

Monday, March 5, 2012

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.

Friday, March 2, 2012

Second guessing & Re-evaluating myself

This post has actually been in progress for a few days now, I would start it and then not really like where it was going. It felt like I wasn't really expressing what I felt and what I was thinking the right way. It all started with me doubting, second guessing my grieving process. I understand that everyone grieves differently yet alot of what I read had the same examples, people and even the packets that counseling centers sent me were expressing how they felt like they couldn't go on. That they were consumed with the pain and what not. How it took all their strenght to go on, to be able to wake up and function. To see the beauty that is still out there. If you know me or have read my previous post you know that I didnt go thru the typical emotions associated with lossing a baby. Here is where the doubt and second guessing begin, I didn't stop eating or lay in bed all day not wanting to go on, I didn't "lose it", I didnt get all hysterical when my precious baby took her last breath or even when they told us that we would have to say good-bye to her.
I didnt go thru step one-DENILE,  which alot of people say you go thru.(now don't get me wrong if you did then that was your grieving process, hench why I said everyone grieves differently)I know that my beautiful baby is gone, that she is the most beautiful angel in Heaven and that when I get the urge to be near her I can visit her grave and take her flowers (does this make me sound morbid?)
 I kind of went to acceptance. I am the type of person who needs to know and understand the process of things. When Emmaliese was in the NICU I would listen to everything the doctors and nurses told us and right away ask them questions if I didn't understand or had no idea what they were talking about and then I would get online and look it up and research the hell out of it, see this is where I learned way before the doctors/nurses actually told us what exactly Surfactant Deficiency was and that if Emmaliese did have this then unfortunatly her outcome wasn't very good.And I cried telling my husband what I had read. It didn't make it any less painful to have it confirmed by the doctors. But I guess in a way I had a little more time to process it all or at least to be at peace with what at that time I thought could happen but was wishing and praying would't. I alway try to look at the bright side of things or not dwell on the bad. Thats just the type of person that I am. I never for once thought I would lose my little girl, but the one time that she looked tired (after being told that she most likely did have Surfactant Def.) I told my husband that I didn't want her to suffer, or be in pain.That she was to beautiful and small to be going thru all that she was. That I would stand and fight with her as long as she did. But that I would also let her go if that was what she and God wanted.  You know the feeling of peacefulness that you get when you accept something or come to terms with it well thats what I felt when I told my husband this, even as tears were rolling down my cheeks.

So this brings me to GUILT. Now I know and understand that there was nothing that myslef or my husband could have done differently. That there was no way that we could have known about this disorder. But late at night when everyone is asleep and I just can't seem to join them the guilt creeps in. All the would haves, could haves, should haves start rearing their ugly heads. I wish I would have spent more time with Emmaliese, I feel horrible that she would be alone for hours with just her nurse ( she had wonderful nurses and I can't thank them enough). I wish I would have held her more times, or just held her for longer periods of time, 2-3 hours at a time now don't feel like they were enough. Maybe I should have had my OB due extra blood work I don't know my pregnancy was so normal and healthy I had no issues but maybe just maybe I should have just asked them too.I wished taht I would have thought to take her at least a side button shirt so that she wouldnt always be in just her diaper, at that time I just didnt think that with all the tubes and lines that was possible. I wished I would have been braver/stronger and spent more time with her when we took her off the ventilator. I started to get scared when she started to go rigid, I was afraid that I would somehow hurt her. The biggest regret/guilt that I have is that I didnt spend every waking moment with her. As of today I guess I feel guilt that it has only been 47 days since she passed away and I am able to function and do things. How could I be this okay when it has only been 47 days?

I guess we have reached the moving on stage. I don't know how much moving on I have actually done. I still look at her pictures and videos that we have of her, I say Good morning and Goodnight to her baptism dress that hangs in her side of our walk-in closet. I leave the light on for her in there as well. It helps me to talk about her and to educate people on what Surfactant Def. is. There are so many other lung diseases out there that I had no clue about. I know sometimes its hard for my family to talk about her with me I know that the pain is still raw for them, I just want them and everyone else to rememeber her as the happy baby that she was. I don't want them to cry when they remember her or if they do to cry I want them to be happy tears, because they remember her beautiful eyes and that smile that would always make everyone around her smile. Emmaliese never whimpered or made unhappy faces and I know that she would want us to remember her with smiles and happy tears not sad ones. I know that I still have tough times ahead, Easter is coming up and she wont be here with us, same for her sister's 5th birthday, and I know for a fact that Mother's Day and Father's Day will be hard for us. And then we still have Thanksgiving and Christmas and of course her birthday will be extra hard for us, I can already see that. valentine's Day and her daddy's birthday were very hard for me. But I think that by knowing that she is with us it will help. Just because she is gone doesn't mean that she can't be with us in spirit.

So now after writing all this it has made me re-evaluate myself. People have always said that I'm a strong person. And now especially because I went thru this and didn't fall apart I have been reminded again. I wish that I didn't have to loose my baby in order to be a stronger person but like a friend told me God has a plan, I'm not too sure what his plan is for me at this exact moment but I have faith and things happen for a reason. And who know what He has in store for me. The one thing that I do know is that Emmaliese has tought me soooo much. She is the reason that I am a braver and stronger mother, wife, daughter and friend. She is the reason that I go on, that I continue to see the good in things. That I always look for the rainbow after the storm. My little girl is all around me so the beauty is and will always be around me. I may have grieved her differently and not in the way that most people expected me to but I am at peace with it. I still cry but I will always cry because I will always miss her and will wonder about all the things I could have done with her.I will miss all the joys and not so joyful moments that we could have expirienced. Like I have always done I will look at the bright side of this (even if at times there doesn't seem to be any). My little Emmaliese made me a better person and I want to honor her and her memory. I am working on getting involved in ways to help other parents who have suffered a loss. My little girl, my angel will give me that extra push that I needed to actually do something with my life. I mean she has already started...I am blogging something that I never thought I would do. I always wanted to make both my daughters proud and  I hope with all my heart that I can do that. I want Nathalia to see me as a strong woman and to look up to me. And I want Emmaliese to also be proud of me, to look down on me and tell all her little angel friends "Thats my mommy". After this very painful loss I know that I can handle least I hope so.

Sunday, February 26, 2012

Lots to do

Haven't really felt like writing much......but today after a quick trip to Micheal's I realized that I have a few project to do to keep me busy and to help me deal.  So I present to you my To Do List/Projects:

1. Make final plans for Nathalia's 5th birthday Party- Last year my little girl was very into the Disney Princess, we went all Princess on her birthday decorations, cake etc......This year she wants, drum roll please.......Power Rangers Samurai. So I have to get on it since we only have 62 days till her party.

2. Emmaliese's shadowbox and scrapbook: I need to gather and organize all the things that I want to include in both....I have never done a scrapbook so any advice will be welcomed. I alreasdy saw the shadowbox I want just need to buy it hehe.

3.Nathalia's scarpbook: I already have the book and most of her pictures in order. Trying to fit from birth till now in one book. Will I be able to? Or I might have to seperate her 3rd birthday and baptism in one since we celebrated both together.

4. And last but not least get a new bedroom set and redecorate our bedroom. Paint and all.

This post is random for to all who read my blog...please ask me frequently how my projects are coming along, I tend to put things off hehehe. Another random thought, while talking to my husband I told him I hate Sundays, see we said goodbye to Emmaliese on a Sunday but then it hit me Nathalia was born on a Sunday. What do you all think about that?

Monday, February 20, 2012

The Last Few Days

These past few days my emotions have been all over the place.

 Friday was the hubby's birthday and we all wished him a Happy Birthday with smiles and hugs. And during the day I was okay, but Friday started going down hill when he got home from work, I was tired both physically and emotionally and seeing him sitting at the dinner table by himself when he should have been surounded by his two little girls just broke me. And I lost it, I ended up crying my eyes out standing over the stove. And like the great husband that he is he came over and hugged me, he asked me whats wrong?What do you want? And I finally voiced it I said I WANT MY BABY!!! Its hard to celebrate something when your missing a part of you, especially on his birthday when its so close to our little girls passing. After a good cry I pulled myself together and went on with what was left of  our Friday.

Saturday we went to my mother in laws for a birthday party that they threw for the hubby, it was their way of helping. They were nice enough to let us know that they know that we are still grieving and that they still feeling Emmaliese's loss as well, that they just want us to know that it was their way of helping us go on. We had a good time, we had cake and danced some. And it may have looked like I had moved on but Emmaliese has always on my mind, even as I danced or smiled or laughed, part of me was with my little girl, who in spirit was with us but I would have loved for her to actually be there. I would have loved to hear people oohing and ahhing at her, instead of looking at pictures of her and telling us how they wished there was something that could have been done. I think Saturday was more draining just because we were celebrating the hubbys birthday without her, it felt somewhat wrong for us to be having a good time with out her and especially since her passing is so recent. I know Horacio had mixed emotions, he was grateful that our family thought of us and wanted to show him that they care, and at the same time he was sad because he only had one of his two princess' there with him.I wonder how we will handle the rest of the birthdays, holidays, and other family events?

Sunday we went to my best friend daughters 1st birthday, and we were there for a little bit. One Nathalia wasn't feeling well. She had a slight fever and just wasn't in the party mood. And two I realized that I'm not as ready as I thought I was to be in a room where there are more than two babies.And where at some point even if they dont mean to an uncomfortable silence fills the room, it becomes the elephant in the room. But the time that we were there we had fun, it was nice to see friends that I hadn't seen in a while, it was just a little hard since most of them have babies. But I know that it will take time, and I'm grateful to have good friends who understand me and are supportive.

And last but not least Today.....Today the hubby and I made the same drive that we made for a whole month everyday and went back to LPCH....only this time we went to get our blood work, to see what mutation we have as far as Surfactant Deficiency goes. Emmaliese was diagnosed with Surfactant Dificiency ABCA3. They told us that we should be getting the results in 4 to 5 weeks. Once we have the results we will know what our chances are of this happening again with further pregnancies. Part of me was very anxious to get the blood work out of the way and now part of me is scared of what the results will say. I'm afraid that the test will show that we have a very high risk of going thru this again and that my dream of having more babies will have to end. I know I am probably getting ahead of myself but once you have gone thru what I went thru you tend to fear alot of things, and to be scared of alot of things.I hope 4 weeks go by fast.

Wednesday, February 15, 2012

One month Angelversary

Dear Emmaliese,

 A month ago today, you left us to be with God and all the other angel babies.
 A month ago we held your precious body for the last time.
 A month ago we saw your big beautiful eyes for the last time.
 A month ago you smiled at us for the last time.
 A month ago I lost a part of me, beacause I lost you.

And to me it feels like it was just yesterday and yet at the same time it feels like its been longer, I guess some days just seem longer, they run into eachother and I don't really see the difference between one day or another. Your daddy and I still havent been able to put your crib away, and its funny because we didnt even get to get a mattress or crib bedding for it. Its just an empty crib. In a way thats how I feel:empty. My arms are empty because I can't hold you. Empty beacuse I won't hear you call me mommy. Empty because I wont have any 'first' with you. I miss you so much it hurts. I don't really look at the pictures and videos that I have of you and not because I dont want to but beacuse I'm afraid that if I look at them to often I wont be able to get up and continue on with life. And you know I can't really do that, I have your sister to take care of, she misses you alot too. She always talks about you and when we go and visit you she tells you about her day. What she did in school, what she had for lunch. I love both you and your sister so much. Emmaliese I hope that up in heaven you are well taken care of. That you are able to feel how much you are loved and missed. You will always be a part of me, and everyone who was lucky enough to get to meet you. I want to thank you because everyone tells me how strong and brave I am and you know what I owe it to you. You tought me what it is to be brave and strong. You hung on to life for a whole month and one week. You fought a tought battle and gave it your all. you never gave up, you hung on till the very end when your body just couldn't take anymore machines, and needles and medicine. I mean how many people are on sedation and morphine 24/7 and still give the nurses a run for their money. I remember how even with a sedation drip they still had to give you extra sedation so you could go to sleep and let the ventilator due its job. Like nurse Helen said "Emmaliese is one tough cookie". And you were baby girl, don't you ever doubt that. Remeber you did pull out your breathing tube once. That was a scary time for me, I walked into the room with your sister to see you and all I see is nurses and doctors surrounding your little bed, thats when they explained to me that you had to be reintubated cuz you pulled your  tube out! So I'm sure that your are giving the man upstairs a run forn his money too :)
Emmaliese I want you to know that Mommy loves you and that I will never forget you. I am so grateful for the precious time that I got to spend with you and for all that you tought me. Everytime I see the sun shine, see a flower bloom,the color pink, a rainbow, a butterfly, feel the wind, hear your sister's laugh, anytime I see or hear anything that is good and beautiful I will think of you. You are helping me to keep going and to see the good in life. Your memory will do that for me. I am blessed to have been your mommy. I love you Emmaliese, may you always watch over all that love you.
Mommy loves you Emmaliese.

Tuesday, February 14, 2012

Valentine's Day

Today is Valentine's Day and I can't celebrate it with you, at least not the way I want to. I have to settle for giving you balloons by placing them on your grave. I would rather be celebrating it with having you in my arms and placing kisses all over your cute little face. You are loved and miss so much! Happy Valentine's Day my sweet baby angel, I'm sure you are having a party of your own in heaven.

 Last night I was in the kitchen and your sister came up to me looking sad and said I miss Emmaliese. It broke my heart! I picked her up gave her a big hug and told her that I missed you too, but that you will always be with us. That we have so many pictures of you and we have your doll, your lion that is still wearing its little bow, and blankets that even today still carry your wonderfull clean baby scent.And that you will always be with her, watching over her.
Later while we were all at the dinner table, you asked us all "Do you guys miss my baby sister Emmaliese?" Once again my heart broke. So today after I pick her up from school we are going to take you a balloon she really wanted you to have.
From:Your big sister.

Today when your daddy was getting ready to leave for work he came into the kitchen to get his lunch and he gave me a hug and I broke down and cried. I miss you so much. After he left I went into our closet and sat down on the floor with all of your pictures and cried. I cried for what could have been. For all the holidays, birthdays and special events that I won't be able to celebrate with you. My arms litterally ached because I wanted to hold you so bad. Today everyone is celebrating love and friendships and you know what in my own way so am I. I celebrate all the love you gave me and not just the month and one week that I had with you but all the love that I will have for you and all the love that I know you have for your daddy, sister and me. You will always be LOVED!!!!!

Thursday, February 9, 2012

Two months and Today.

Two months, thats how old Emmaliese would have been yesterday.And I wonder if I had been able to bring her home how much weight she would have gained, would she be wearing 0-3 month clothes or would she be a big girl and be wearing 3-6 months. Would she be at her correct mile stones. Would she be awake the whole day and sleep at night or keep us all up at night. Would she have loved to be held or would she rather be in her bouncer. I guess those are things that I will always wonder. But I take comfort in knowing that my brave, strong little girl is no longer in pain and is in a better place with the most beautiful wings that anyone can imagine.

Today I recieved her death certificate in the mail.

And the sad/funny/weird thing is that I still haven't gone to get her birth certificate. I opened the envelope and read every single line and then I got to cause of death and read Respiratory Failure and Inherited Disorder of Surfactant Metabolism. Ever since we learned that our Emmaliese couldn't breath correctly I feel like I cant breath. I cant hold my breath as long as I could before. I make sure I tell Nathalia to take a nice deep breath and let it out when ever she gets frustrated. For some reason not being able to breathing has become this fear for me. I feel sufficated when people reach over me, or in a tight place. I freak out when Horacio playfully covers my head with a blanket, even writing about this has me breathing hard. I also feel guilt beacuse I didnt know that either myself or her daddy or both of us carry the gene that made her to have this problem with breathing.Its like I did this to her, how could I have not know that I have this gene that caused my baby girl so much suffering and in the end took her life.No one in our family has ever had this problem. Alot of people tell me that what happened is not our fault that we didn't know but as a mother I feel that its our job our duty to protect our babies. Its our maternal instict to know that something is not right. Part of me wishes that Emmaliese would have stayed insde my tummy forever that way she wouldn't have died. She was safe inside of me.
I didn't really know how I would react to seeing the certificate, I had never seen one. I wont lie it did hurt to see her name on it and to see her date of birth and her date of entrance to heaven. Its true what they say a parent should never out live their children not only beacuse its super painful but because they are just starting out and have so much to explore, see, and learn.
Part of me is waiting for her passing to hit me, and I mean really hit me. Sometimes I feel like I'm a bad mother because I didn't get all hysterical when she passed or even when she was on ECMO.

I have read blogs and articles that have moms, dads, grandparents and they say that losing their baby was so painful that they didnt want to get out of bed, that they couldnt see the bright side of things. And I'm afraid because I didnt or at least I haven't gone into that side of things. Yes I cry, I hurt I have moments when I dont really want to go anywhere but then something will happen that makes me get out of bed, forces me to keep going. I will never forget holding my little girl for that last time or knowing that I will always have an angel watching over me and letting me know that its okay to go on. I guess in the end we all have our own way of grieving, it helps me to see at least one picture of her a day. And to tell her story, so I hope that reading what Emmailese went thru, what we as a family went thru helps at least one person who has lost a daughter, or a son, or a grandchild or any loved one. Take comfort in knowing that all of our babies are playing in heaven together.

Sunday, February 5, 2012

A wonderful Father, A wonderful husband

For some reason today I just felt weird, and it wasnt until a few minutes before my husband, Horacio and I put Nathalia to sleep that it hit me why, see he asked me what was wrong, that today I looked sad. And yes I am sad, I have been sad since my little girl was in the NICU at both hospitals, since we had to make the decision to take her off the machine that was keeping her alive, since I held her while she slowing took her last breath and her heart had its last heartbeat, since we buried my little girl I have been sad even if it doesnt seem like it. But knowing that I have him to hold my hand, to hold me while I cry, to listen to me talk and talk and talk and make no sense, to have him help me take care of Nathalia, to wash the dishes, to clean our room, to just know that he knows what I am going to ask him before I even ask it has helped me be less sad. He has helped me smile and laugh when it hurst to, when it feels wrong to because we dont have our little girl with us. He has helped me feel okay about my feelings, that I didnt have a nervous break while our little girl was slipping away, but that I still cried everynight in his arms because I didnt want other to see me as weak or to feel sorry for me I didnt and in a way dont want people to feel sorry for me, see I was blessed to have had a daughter and I am now blessed with an angel. He understood and still understand my way of grieving. I have always been the strong one in our family, the caretaker and I felt that I didnt have time to breakdown while my little girl was so sick. I had to make sure I understood exactly what the doctors told me and to fully understand what was going on. I am very lucky to have him by my side. His birthday is coming up on February 17th, and I know that even if he acts like its no big deal he was looking forward to celebrating his 28th birthday with his two princess'. And in a way he will because Emmaliese will be celebrating her daddy's birthday with us from heaven. Horacio is not only a great husband, his not the most romantic guy but he defenitely has his moments, but also a WONDERFUL dad. He always puts Nathalia and even my needs before his. I remember a couple years back he only had one good going out jacket but he wouldnt buy himself another one because he would rather spend the mony on buying stuff for Nathalia and me. I literally had to force him to buy it.

I guess I just wanted to take some time and tell him and everyone that I love him with all my heart and that I am so grateful to have him in my life. I honestly don't know what would have been of me during this difficult time if he had not been with me. Horacio you are an amazing father Nathalia is sooo lucky to have you as her daddy, you have tought her so many things, have been there for her, and she always knows that you love her with all you heart. and I know that Emmalise felt the same way.  She always knew when you were by her side, and she would look for you when she heard your voice and would always hold your finger.You showed her so much love and affection in that one month and one week that we had with her. She always knew and will continue to know that you love her and that she will always be your porcelain doll. Horacio tus dos hijas siempre van a saber que tu las amas, que son tu adoracion. Gracias por ser el mejor papa del mundo y el mejor esposo.

Thank you for making me feel okay about my feelings and for understanding me. Especially for loving me the way I am.

Emmaliese and daddy

Daddy with his girl <3

Nathalia and daddy

Saturday, February 4, 2012

What made me blog (its a long first blog)

Towards the middle of April 2011 I suspected that I was pregnant with our second child. You see my husband and I were already blessed with a beautiful daughter on April 29, 2007. When I took a home pregnancy test and it was postive we were both thrilled, excited and scared at the same time. A week later my doctor confirmed the news and we started to tell family and friends little by little. As I started to get bigger and bigger family started to guess what I was having. Everyone was SURE I was having a boy, I guess I even started to believe I was having a boy, I mean this pregnancy was totally different from when I was pregnant with my daughter Nathalia. The hubby and I even picked out a boy name Emiliano, and didnt even think about a girl name until you guessed it we went to our ultra sound and were told that we were having a GIRL, I was super happy the hubby was too he just couldnt believe we were having another girl. Nathalia was actually the one to pick her sisters name. She named her Emmaliese. I had a very normal and healthy pregnancy no low iron, no anemia, no diabetes nothing not even the high blood pressure I had while pregnant with Nathalia.
Taken on my birthday, 11/1/11 34weeks4days

 I had my last prenatal appointment on Dec. 7, 2012 and had already been dialated at 3cm for a week, my doctor decided to do a sweep to hopefully push me into labor. Well it worked because that evening I went for a walk at Target and an hour later was having mild contractions every 5minutes. So at 10:35pm I was admitted to the labor and delivery floor. I would love to say that I had complications during my labor and that thats why I lost my baby girl. But that is not the case my labor was very routine, at 3:30am I was given the epidural and at 4am my water was broken. By 7:20am i was fully dialated and ready to push. My baby girl was born at 7:32am wieghing 7lbs 8oz and measuring 20inches. She did cry and I was able hold her. She didnt want to take my breast so we assumed she just didnt want to eat. My nurse took her from me and said ' I want her to cry some more' I was like oh okay. She did cry some more and then was taken to the nursery along with my husband. I was taken to my room at around 8:30am and by 11 I still hadnt seen my baby. By 12pm I called the nurse and asked why I hadnt seen my little girl....alittle after 1pm a pediatrician came into my room and said that my little girl was having some trouble breathing but that it was normal, that sometimes baby just needed alittle more time to learn how to breath. That I would have my little girl in my room by that night.

Well that night turned into 3 days and later into a see my daughter never left the NICU, in the next following 3 days she got worse she ended up having to use a CPAP to help her get oxygen and on Dec, 12 2011 while at home resting and waiting for my husband to finish eating so that we could go and see her I got a call from her doctors. I just remember them saying that my little girl who had all her 10 fingers and 10 toes needed to be transferred to a Childrens Hospital(Lucile Packard Childrens Hospital) beacuse she needed more help then they could give her there. We rushed to the hospital and as soon as we entered the room I couldnt even see her bed beacsue of all the doctors and nurses that were around her. The abulance that was going to take her was already for her they just needed us to sign some paperwork. I dont really remember much about those few minutes that seemed like hours to me. I just remeber seeing my little girl laying there breathing but not really breathing because the ventilator was doing that for her(she had been intubated in those few hours that I was at home waiting for my husband) I didnt really listen to what the doctors said, all i know is that she needed to be put on an ECMO machine i didnt know what that was until I saw her on it.I cried seeing how they transfered her from her bed to the incubator that would take her to the abulance and to the Childrens hospital. They asked us if we wanted her babptized and thats when it hit me and I broke down. There was a big possibility that my daughter wouldnt even make it to the hospital.

It took us 20minutes to get to the hospital and when we got there they were ready for her to have surgery, that would place her on the ECMO machine. They explained what the machine would do for her but all I heard was this is her last and only chance to live. We signed the papers right away and were told that the surgery would take about an hour(thats what my mom tells me I dont remember, it felt like it took forever and at the same timeit felt like it was over very quickly) I have no words to explain how I felt seeing my precious baby girl on that machine, seeing her blood being pumped out of her body, re-oxygenated and put back into her tiny little body.
Emmaliese on ECMO, thats her daddy next to her.

Emmaliese on ECMo, she was on this for a week.
 After a long week my fighter, her daddy's porelain doll was finaly able to come of this machine. She still couldnt breath on her own and was on a conventinal ventilator. The doctors still were not able to find out what as wrong with her, Her heart and other organs were fine, well all but her lungs. A few days after she was off ECMO they thought she had viral pnemonia beacuse her lungs were so white on the x-rays. Days turned into weeks and weeks turned into 3 weeks and thats when the doctors told us that they suspected she had Surfactant Dificency. Now here come the frustrating part they never said exactly what that was, so i researched it and found the worst news any parent wants to hear. Surfactant Dificency in full term babies is very rare and has no treatment or cure(I later found more research that some babies are diagnosed later in lufe and some are lucky to survive). My baby unfortunatly had everything stacked up against her, she had the pnemonia, she then got an E.Coli virus. Emmaliese would have her good days(when she was given her surfactant dose, taht would last her about 3 days, she would need less oxygen but was still on the ventilator. About a week before Christmas they had some blood work sent out to test for Surfactant Dificency, they told us that it would take anywhere from 3 to 4 weeks for us to get the results back. Well as you might now know we got those resluts back sooner, but they didnt really make a difference in her outcome. She was starting to need more and more Surfactant. A premature baby will get about 1-3 doses on Emmaliese's last day she recieved her 16th dose of surfactant. Her lungs were so worn out from not being able to make her own surfactant and from being on ventlators her whole life, she developed Chronic Lung Disease. My healthy baby girl was getting worse and worse, (i forgot to mention she was on a morphine drip and sedation drip 24/7), her lungs just couldnt take anymore. We had to make the decision to take her off the ventilators and become an angel.She gained her angel wings on January 15, 2012. That was the hardest decision that we have ever had to make. And that is what has brought me here...I am now a member of a big club that no one whats to be in....I have a baby who now has angel wings. I still have more to tell about her month long struggle,her fighting spirit and how she touched so many lives, but that will be for another post.
My angel on a good day...awake and smiling.

One of my many favorite pictures of her.