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.