5 years later...

I figured I write an entry since it's been long overdue and I've been thinking about it a lot lately since 5 years have passed. A lot can happen in five years, especially the growth of a child. Laura would be at that age now where she could carry out conversations, express her feelings and like her family history of sports was destined to be, would probably even be playing softball by now as well. She would've already have had her second open heart surgery and prospectively would have been a healthy five year old. But all of that never happened, and never will happen. 

When I found out I was pregnant, I was about half way through my paramedic class. As the class progressed, I became bigger and bigger. Ultimately, I was at the point where doing hospital time for my paramedic was over ruled by my large pregnant belly and exhaustion from working many hours, including weekly doctor appointments with all sorts of specialists. So, the plan was to put hospital time on hold until after Laura was home and healthy. After going through a medical nightmare with Laura and watching CPR being performed on my own infant daughter, everything I learned in paramedic school (anything medical in general), was blocked from my brain. Nothing made sense to me. All knowledge of cardiology, respiratory, medications, etc. just drained from my memory. My brain put up a strong wall blocking all knowledge of emergency medicine. With the help from a few people, I was able to get an extension to finish my time. However; finishing paramedic school was not at the top of my to-do list after losing a child. Neither was learning.... Nor studying.... Nor working...... Nor anything for that matter. It took a good two years or so to fully regain my love for EMS. Finally, 4 years later, I enrolled in paramedic school again, nervous about completing something I once started. It was like learning everything all over again. Just shy of 5 years post Laura's birth, I finished something I started. Such a large milestone for me to finish something I had one lost interest in and thought I would never have the drive to finish. In June of 2015, I finally obtained my paramedic license after so many internal fetes. 

One thing I have learned about my grieving process is the mind's ability to block out memories; to store them on the back burner to protect myself. The first couple of years after Laura passed ate me alive. I lived with constant flashbacks and nightmares every single night and physical pain brought on by the mental pain. Then, my mind learned to put those memories into storage. Yes, every day situations or items or sounds may trigger a memory or two but luckily I'm able prevent the avalanche of memories pouring over me. Once the avalanche starts, it's nearly impossible to stop it. The memories engulf me, tear at me and leave me wanting to run from the painful memories in my head. But there's no escaping them. It's best to just bunker down and cry it out and hopefully awaken with enough strength to pull myself out of bed.  The problem though, many people unless faced with a similar event, don't know what it's like to still feel so much emotional pain years later. My world stopped turning on July 22nd 2010 and has not been the same since, whereas everyone else continues with his/her daily routine. No one around me would understand if I called out of work because "I couldn't get out of bed." It's one of the toughest things to do when I'm engulfed in sadness...  I don't post as much about Laura to social media anymore. Not because I've "moved on" but because the world expects me to move on. Because people don't want to read about depressing post. Yes I still post stuff occasionally. It may offend some people or sound "depressing," but just remember: to you, it may only hurt or bother you a couple of minutes. To me, it hurts: Every. Single. Day. 

"Do you have any kids?" Is by far the toughest question I face. The amount of guilt and sadness and anger with myself I feel bears down on me. Sounds like an easy enough question to answer; "yes, I have one" but the conversations never ends there. It's usually followed by, "how old?" Or "boy or girl" or people your around everyday reference to "does your child do (this) or (that)" etc... Etc.. How do you answer those questions honestly and avoid bringing up the death of your child? May sound easy but it's not. As ashamed as I am to admit, I always answer "no." No, I'm not trying to hide the fact I indeed have a daughter in heaven. No, I will not break into a million pieces talking about my daughter. I have found it's easier to say no, it's the safer way to go. It tears me apart to say "no." It's eats at me for the rest of the day. But mostly, I say "no" to protect the person asking, to avoid an uncomfortable situation. A lot of people become uncomfortable when I talk about the death of my baby. They think I'll break into a millions pieces. It's a taboo subject. Maybe someday, I learn to say "yes" and be comfortable with people's uncomfortableness and awkwardness of the situation. I may be "strong" as I'm often told but I feel as though I am not as "strong" as everyone thinks. Not enough until I can say, "yes, I have a daughter."

Dating after losing Laura was tough at first. I felt guilty "having fun" in general, but to be dating a guy was on a whole new level. Initially, I felt selfish. Like falling in love with someone else was taking from Laura. But then, I met Patrick. I told Patrick when we first started talking about having a daughter in heaven, before we started dating and from that day forward, he always makes sure he includes Laura. Such an amazing young man to talk about Laura and how he would've raised her as if she was his own. The first Christmas  we were together in our apartment, I came home from work on Christmas Eve to Laura's stocking full of stuffed animals and knick-knacks associated to Laura. I looked over at Patrick and there he was, standing there with a huge smile on his face! Tears rushed to my eyes and from that moment on, I knew he was a keeper. Having him by my side really helps me get through the tough times, for he can sense when I'm tensed and with ease, he makes me laugh, every time. 

One of the most valuable lessons I have learned from Laura, is to live life to the fullest. Life can be so fragile and can change in a heart beat. You may think, "something like that will never happen to me." That is what I thought all those years growing up, watching all of my medical shows and situations in which parents face devastating news about their child. But it did. A disease so rare, in fact, it took my daughter. I've learned that spending time with friends and family is what means the most. You can't go back in time to re-live what you have missed, so enjoy it while it's here. Yes I still have bad days, but I've seen rock bottom and I know what it feels like to feel so empty and dark and incomplete inside. I never want to be in that dark place again so I've learned to fill my life with friends and family and things that make me happy. I set goals so when I accomplish them, I get further and further from that dark mindset I lived in after Laura passed away.

 I've developed a love for CrossFit. Not just because I like lifting weights and fitness means a lot to me but because of the burn and the pain and hard work associated with CrossFit. I have often felt numb, as if I lived in a fog and watched my life like a fly on the wall. I would occasionally rent sad movies or movies involving baby loss and feed into those feelings. But since starting CrossFit, during the workouts, I'm reminded that I can feel the burn and I am in fact very much alive and not just "observing" life. CrossFit has given me a purpose to push myself and to set goals and to clear my mind. Besides, what better way than to relieve stress and sadness with lifting weights and cardio?

I think about Laura every day. Sometimes good memories and sometimes bad memories. I can't help but imagining what a beautiful 5 year old she would be. I imagine being able to see her one more time and a little, beautiful, brown-haired girl, with her white angelic dress, running into my arms. It gives me such warmth and pure happiness to have these envisions. And I only hope, "I'll see you again someday" 

Laura's Story from an Aunt's View

Before I start, for those who don't know, my name is Cassidy and I am Laura's aunt. For the first time I will share Laura's story from an aunt's point of view. Britt and I are not only twins but best friends. We do everything together, from the same sports, to the same careers as EMTs. When she is happy, I'm happy and when she's hurting, well, I'm hurting too. Whenever I have exciting news, she's the first one I share it with. So, there was no doubt when she found out she was pregnant, I was the first one to hear of this fantastic news. Right from the start, my unborn niece or nephew was already spoiled. I had picked out a boy outfit and a girl outfit because I HAD to get the first outfit. When Britt found out she would be having a girl, I was beyond happy. I imagined our girls (My daughter was 3 at the time) being best friends and already started planning the 'yearly Christmas Grandkids picture'. Those exciting thoughts soon changed to anxious thoughts as it was discovered in-utero, that my niece had a significant heart defect. Britt saw quite a few doctors and each time I would impatiently wait by the phone for what I would hope would be good news. The doctors had trouble pinpointing the exact heart problem but were pretty confident they would be able to fix it. I remember sitting in one of her appointments with the fetal cardiologist and for over an hour the doctor reviewed the ultrasound of my niece's heart. The doctor mentioned delivering her in Boston so they could do the heart surgery shortly after birth. Throughout the entire doctors visit I dreamed, my niece being born and the doctors would be wrong and she'd get to come home. The closer it got to then end of the pregnancy the more I anticipated my niece's birth. When Britt announced that her name would be "Laura Marie," I instantly fell in love with the name. When Britt was 35 weeks, due to contractions she was transferred to Brigham & Women's hospital in Boston. Just a day before Laura's birth I was up visiting Britt and we were joking around. The day before I had my wisdom teeth removed and Britt and I joked that Laura would grow up calling me, "Auntie Chipmunk" because her first look at me would be of a swollen jaw. We sat and chatted and before I left I told her, "Next time you want me to visit, it better to be to visit you and Laura!" At approximately 11pm that night, I got a text message saying, "I want you to be in the labor room, come now, my water broke." So at 11pm I flew up to Boston in a record of 45 minutes just to find out they were trying to stall her labor so that there would be more NICU and specialty doctors on when Laura was born. So the entire night, my mom and I, shared an itty bitty couch and didn't get much sleep. Early the next morning Britt's labor progressed quickly Laura came into the world so fast I barely had a chance to realize what was going on. The second I heard her little cat-like whimper, I cried tears of joy. I was so proud of Britt and told her how much I loved her. As they were drying Laura off I realized I hadn't taken any pictures of her yet. She was tiny and a couple of different doctors in the room. My shyness started to overcome and I said to myself "I'll grab pictures later on when things settle down." Then, for some reason I felt the need to overcome the shyness and started taking dozens of pictures on my phone (which I wouldn't learn till later, that those pictures were the only "healthy" pictures taken of Laura). Britt got to hold Laura and I could see the joy on Britt's face. She had that "happiest mom ever" look. As I watched them bundle Laura up I couldn't help but think how amazingly beautiful she was! They took her to the NICU shortly after. Later that night, I got a phone call from Britt saying how Laura was having trouble breathing so they had to intubate and put a chest tube in. We all expected some set backs as she was only born at 36 weeks and her known heart complications. Even though it was worrisome, I knew Laura would over come it. Over the next week and a half, I kept my phone by my side and visited often. I spoiled Laura with new flower hair pieces that gave the nurses an excuse to play dress-up in the middle of the night! Laura's health wasn't getting any better and as the time went on I worried more and more. I wanted nothing more than for Laura to get better. I pictured her what she would look like in her toddler years and overall thriving. Nearing Laura's second week of life they discovered it was most likely lung related so a biopsy of her lungs was obtained. The doctors had told Britt the results would be in the next day. So I had planned to take the day out of work and went to Boston for the day to not only spend time with my niece but to be there for Britt when the results were in. I'm not one to sit still but never in my life had I been so content sitting by my niece's side the entire day. I remember rubbing her big feet and joked how she had feet like Thumper the rabbit. I held her little hand and snuck in as many kisses as possible. I remember brushing down her fuzzy brown hair that smelled like that fresh newborn scent. I watched the monitor and every time her SPO2 (oxygen rate) went up I felt comforted in knowing that she was going to get better. Every time a doctor walked by, I anticipated it was them coming in the room with the results. The day went on and no results were given, so I left the hospital and headed home. The next day I went to work at my office job with my phone in sight and not at all focused on the job. My coworkers all gave happy thoughts and I was pretty convinced the results would show that what ever it was that Laura had, they could fix it. Around 10am I received the text message; the one that would forever change my life. I read the words "there is nothing more they can do for Laura." I knew what it meant, but I couldn't come to terms so I text back, "what do you mean?" Then the reply was not what I wanted to to hear, "Come now if you want to say goodbye to Laura." I just cried. My coworker asked what was wrong and I just handed her my phone. I called my then boyfriend and he came and picked me up and off to Boston we went. The entire car ride was silent. Not one word was spoken the entire ride up there. When we got there, I waked in Laura's room and my mom and dad had already got there. I remember loosing it all over again. My dad and I hugged and we cried. The next couple of hours was spent making a dozen of hand prints and footprints, clipping a piece of her hair and just enjoying her. The nurses were so incredible and caring, it's something I will never forget. Laura was then baptized in the beautiful angelic dress that Britt and I wore for our baptism. I took hundreds of pictures because I knew just how important those pictures would be. The time had come to say "goodbye". We left the room so the nurses could remove all the tubes and monitors. When we re-entered the room we sat in chairs and Britt in the rocking chair they set up for her. They placed Laura in her arms and she looked so peaceful. She was free of tubes and wires. Warning: if you upset easily, you should probably skip over this next paragraph. Shortly after Laura was placed in Britt's arms, the color began to drain from Laura's face. Right then, my mind flashed back 4 weeks prior: I was only a basic EMT at the time and had my first code. The patient, a 70 something year old lady was a trach patient on a vent. We had gotten her into the ambulance when I looked over to see the color drain from her face starting at her lips. Her lips turned blue followed by the area surrounding her lips. Because this lady was a "full code" we worked her. We performed CPR on a 70 year old lady with a trach and got her back. Fast forward back to reality, there was Laura, and I was witnessing the same thing. The blue in her lips began to set it and I asked myself, "how is it, I have to do everything is my power to save a 70 year old trach patient but I can't jump in and save my 2 week old niece?!" It just wasn't fair. How could I just watch her pass, I'm an EMT, I'm trained to save lives! Every few minutes the nurse came in to listen for a heartbeat. I just sat staring at the perfect angel and tried so hard to picture every single detail about Laura so I would never forget. Britt sat there rocking her and I didn't even want to begin to imagine what it would be like to leave the hospital forever without her daughter. She had only been a mom for two weeks and I had already claimed her to be the strongest mom I knew. Britt leaned down on multiple times to kiss Laura but when I saw her whisper something to Laura, I knew what Britt was telling her. I knew it was over. Laura grew her wings and was finally at peace. The nurse came and put Laura back in her bed and discussed funerals and a bunch of other things that I tuned out because of the thoughts of how am I going to leave this room and never see her again. Eventually we packed up and left. When we got outside I felt peace for Laura. Yeah, I was sad, but I knew she was at peace. Then while driving home, we saw a rainbow. A rainbow on a perfectly clear day. I thought only those kinds of things happened in movies. But there it was, right in front of us. It confirmed my feeling of peace for Laura. The days and weeks following Laura's passing, I held my emotions together to be strong for Britt. As not only my sister, but as my best friend, she needed me more than anything. Laura has been gone for 4 years and still I think about her daily and miss her so much. I miss her as if she was my own. When I am having a bad day, or my daughters are driving me nuts, I think of Laura and Britt. Britt is the most amazing mom and I will forever look up to her because she is an incredibly strong mom. Written by Cassidy O'Keefe

Life Without Laura 10/11/10

Coming back to write this entry was tough. I avoided this website completely over the last couple of months for obvious reasons. October 22nd will make it 3 months since Laura passed. Three months, seems like a decade ago. At the 3 months mark after giving birth, most parents are saying how they can't believe how fast time is flying. For me, it has gone by very very slow. Right now, I look at this story that I have written of Laura's life, to be a story with a sad ending. All of the happy moments and memories in this blog, brings out a bunch more sad memories. Hopefully, someday in the future, I will be able to say different about the blog and look at it more as a happy ending and not a sad ending like it is now.

THE DIAGNOSIS:

Laura's death certificate stated that her cause of death was Alveolar Capillary Dysplasia (ACD). This disease is when the vessels of the alveoli form out of place, creating a barrier to gas exchange in the lungs. There is neither a cure nor a treatment for the disease and the longest surviver was only 2 months old. Had I kept Laura on the vent for as long as she could fight, Laura would have ended up passing away to respiratory failure due to no oxygen being exchanged in the lungs.

THE FIVE STAGES OF GRIEF: Denial, Anger, Bargaining, Depression, and Acceptance
My GRIEVING PROCESS

For the first few days after Laura passed, I was in denial, my mind was numb and overwhelmed and I felt emotionally and physically drained. I hardly had anytime to myself, anytime to think and dwell about Laura. And I liked it that way. I had plans all day, everyday to keep my mind off things. However; life moves on...and that it did. Friends and family went back to their original way of living, like they should. But me, I'm still stuck in the month of July and to tell you the truth, I'm not ready to leave it. I wasn't and I'm still not ready to "let go" of her. And by "letting go" I don't mean to "forget," I mean to move on beyond the grief and move on with my life.

I find that I cycle through the 5 stages of grief multiple times throughout the week, sometimes even all in one day. A lot of times, I deny that she is gone, I feel as though I am still pregnant and months from now I will give birth to a healthy little girl. Or I feel as though months from now, I'll have to go through another emotional roller-coaster ride at Children's Hospital-Boston, as Laura goes through her second open heart surgery. Then, I come to realization that Laura is gone. The realization that I have given birth to her already and then she was too sick to get better. A lot of times, I get angry at many different things; myself, her doctors, life. I get angry at myself because I feel as though it is my fault that she was born with the horrible disease. I could've fought for her to get a lung transplant, although they haven't had a successful case yet, but who know maybe Laura would've been the first. I get angry at her doctors, even though I shouldn't be because they tried their hardest and nothing was their fault. But for some reason, I get angry at them because they couldn't fix my daughter. Boston Children's is the top pediatric hospital in the country and they couldn't fix my daughter ad make her better. Then I get angry at life because I wonder, if there is a God then why would he make me suffer through all of this. Why would he do this to me? And why would he give me something I can't handle? I go through bargaining a lot and I live in the depression stage of grief. I accept that she is gone, which usually triggers the other stages of grief all over again.

July, July, July... When will July end for me?

Every month, I relive the month in my head, as if it was July all over again. Everyday I think about what happened that day in July. I relive it over and over again. The memories... Today being October 11th, back to July 11th, was Laura's 4th day on this Earth. On this day, three months ago, the sun was out after a series of torrential down pours, it was my first time waking up in my own bed after over a week of being in the hospital, Cass and Will came up to visit Laura, and the next day was Laura's first open heart surgery so I was busy meeting up with doctors and surgeons and signing papers all day. Tomorrow, the 12th of October, would be three months since Laura had her first open heart surgery and I remember every detail of that day. And that is how I relive the month of July over and over again.

One of the toughest things I have found myself going through since Laura passed is the nightmares I get all the time. At least 3 or 4 times a week, I have a dream about the day that Laura passed. Each time I'm at the hospital, even though the hospital looks different every time, I see her with all of the tubes and wires. And every time, the doctors inform me of the horrible news. And every time, I make the decision to take her off the life support and every time, I hold her one last time. About that point in the dream is when I usually wake up. Sometimes if I am lucky, I will wake up before all of the bad news happens. In a way, I look forward to having these dreams because I get to see my beautiful daughter almost every night, however; I dread these dreams because I fear the pain it leaves me in every time when I make the decision in the dream to take her off of the life support. I wake up sweating, my heart pounding and sometimes even crying.

Being back to work definitely helps. It gets me out of bed and helps to keep me occupied and keep my mind off things. It also brings back a lot of memories happy and sad ones, but hey I guess it's better than dwelling on it at home in bed, right? People ask me how I am doing, I almost always respond with "I'm good" or I'm doing ok" or "hanging in there," although these responses, right now, isn't the truth, I know one day, whether it be days, weeks, months, maybe even years from now, I will wake up and be ready to have "closure" and to move on with my life while keeping Laura in my heart. But right now, I just miss my little girl wayyyyy too much to do so.

The Results: A New beginning

Tuesday, July 20, 2010
Day of the Lung Biopsy

Tuesday morning I headed to the hospital, with my bags packed, ready to stay the week at the hospital by my daughter's side. I arrived around 10am at the hospital, knowing Laura was going to the OR for a lung biopsy. The fear of them bringing Laura down to the OR, was alleviated when the doctor told me the surgeons would bring the OR up to Laura. And that they did... Around 2pm the OR nurses and surgeons came up to Laura's CICU room, along with a moving closet filled with everything to form a mini OR. Laura's room was turned into an operating room. I signed a consent form and was warned of all of the risk and then off to the family waiting room. Unlike her first couple of procedures, this one I was not as nervous for. Don't get me wrong, yes I was nervous, but I know Laura, I know how strong she is, and I know she would fight through the procedure. About an hour and a half, I was called back to her room and told that Laura tolerated the procedure really well and that the results should be back in 24 to 48 hours. For the rest of the day, Laura remained stable with her sats and heart rate. That night, the doctor stopped in and said that most of the results should be in by tomorrow afternoon. The lung biopsy results would determine Laura's future and tell us what is making her as sick as she is. One of her heart problems was taken care of and the other one was stable enough to not cause her this lung problem. The doctors mentioned numerous times that they were at a dead end as far as treatment for her lungs go. Laura wasn't getting any better on the vent and wasn't getting any worse on the vent. That night, I left Laura's bed side as a very proud mother. It was Tuesday when I finally realized where I get my strength from...my little girl Laura. I said this before and I'll say it again, but Laura has fought so hard to this point, it truly amazes me and inspires me. When she was born, Laura fought to cry with her lungs being as sick as they were, on the second day of life, when she was first sedated, Laura struggled to open her eyes and looked at me right in the eye, Laura has fought through many high risk procedures including an open heart surgery, and even fought back strong after a code. And she is only less than 2 weeks old.... What a fighter! Tomorrow the results.

Wednesday, July 21, 2010
The Wait for the Results

My sister Cassidy, took the day off of work today to be with me for when I got the results. All morning, doctors would come in and out of the room telling us that by afternoon most of the results should be back and the rest, back by Thursday. I was so nervous to hear the results, to see why Laura's lungs were not getting better like they should. The day dragged on as I chatted with Cass for a while, grabbed lunch, and did crossword puzzle after crossword puzzle (I had to down grade to crossword puzzles after doing those hard word puzzles and such because by this point my brain was too fried to think). Five o'clock rolled around and the doctor came in again, making my heart race yet again, and said that they all; cardiologist and pulmonologist, have been calling the lab all day, to a point of annoying the people in the lab, and still, no results. The doctor told me "definitely tomorrow I will have the results in." So Cass left and I continued to do my crosswords until I started seeing doubles, while holding Laura's tiny little hand. One more day, I thought, till I find out what lies in Laura's future.

Thursday, July 22, 2010
The Results: A New Beginning

It took me forever to fall asleep that night and then I tossed and turned throughout the entire night even though I was beyond that point of exhaustion that the CICU parents tell you about. In the morning, as I was getting ready, my phone rang and I recognized the number to be the CICU. My heart must have skipped a beat as I answered the phone. Laura's nurse informed me that the doctors would like to meet with me at 10 am to go over the biopsy results. I tried to remain as calm as I could as I got ready and headed up to Laura's room...all by myself. When I arrived at her room, the doctors were outside of her room giving report during their daily rounds. I got this weird feeling in my gut when they all looked up at me and then some looked away, while they others had that "look" in their eyes. That "look," that says "I have some bad news to tell you." Instantly I started to tell myself, "maybe your just imagining things, just stay calm and think positive." Ten am rolled by and no doctors. My hands were so sweaty as I fidgeted with my name badge, constantly drying my hands off and holding Laura's hand, whispering to her "it's going to be OK." 10:30 am rolled by and still, no sign of the doctors. When it comes to waiting, I only have so much patience and by this point, my patience was very thin. Finally, a little while later, the attending doctor and the cardiologist fellow and Laura's nurse came walking in. This moment in my life had to be the most nerve-wrecking moment I had ever faced. I felt a combination of not being able to breathe and my heart stopping all at once. The "fight or flight" response kicked in and to tell you the truth...I wanted to "flight," I didn't want to hear the news. I was scared shitless. And then, they told me what was wrong with the lungs: the smallest part in the lungs, the blood vessels within the aveoli which exchange oxygen with carbon dioxide from the blood, never fully developed and that they never will fully develop. And then the words came out. Those words that every parent and/or guardian fears the most. The words that should never all be used in the same sentence... "There is nothing we can do".... I tried so hard to hold back my tears. Anyone that knows me well, knows that I HATE letting my sorrow and pain out in public. I am a very private person when it comes to my feelings, and as for crying, that is one thing I have a hard time doing in public. But this time, I didn't care, I couldn't hold back, it felt like someone just ripped my heart out. The pain I was feeling was unreal. The sadness was just too strong...and the tears came out. The doctor gave me a box of tissues as I managed to get out with a scratchy voice "how much longer does she have?" Those words hurt just as much as the words I had just heard from the doctors. Never in my lifetime I thought I would have to ask that of my child. Even when I found out about her heart problem, I knew she was going to be sick and have a chance of not making it, but I never told myself that she wasn't going to make it. I always had it my mind, that Laura would recover and become a beautiful, healthy girl. The doctors told me that I could take as much time as I wanted with her; a day, a week, even a month, or as long as she could fight and hold on for, but "she would never recover from this" and "she would never get better" and "She would be on the vent until she was no longer able to hold on." And then after hearing the toughest words a parent could ever hear and asking the toughest question a parent could ever ask, I had to make the toughest decision, a parent could ever have to make: when to let go. It was then, after looking into her beautiful face, that I made my decision: I didn't want Laura to suffer anymore after that day. I told the doctors my decision and once they were done answering questions, they left the room shortly after and the nurse came over to me asking me if there was anybody I would like her to call. I thanked her for her offer and told her I would call my family. The nurse gave me some privacy and left the room. I cried for a while and told Laura how much I loved her. I just wanted to hug her and let her know that soon she will be in a better place, free from pain and wires and in a happy place. At this point, I was at my weakest. I needed a hug, a shoulder to cry on more than anything. I could only be so strong for so long, but hearing those words, broke me into pieces. After my eyes cleared enough so that I could sort of see what I was doing, I texted my family the news and to come up to Boston to say good bye to Laura. The nurse came in and told me my dad was here and then left again to give me some privacy. I had managed to get my tears under control up to this point, but the minute I saw my dad, I lost it. He came over to me and hugged me, as I wrapped my arms around him...the hug I needed, but still wasn't enough to take away the pain. The rest of my close family showed up and we shared hugs and tears. Dating back to when I was young, and would scrap my knee or have a bad day, a hug from my parents would make me feel better...but not this time, the pain and sorrow was too strong. And the worse part, I couldn't even hug my own daughter to comfort her and let her know that she was going to a better place. The hospital's chaplain came and we had a ceremony for Laura, baptizing her. My mom had brought in the dress that she, Maddie (my little sister), Mckenzie (Cass's daughter), and I were all baptized in, so the dress itself is at least 50 years old, and is a very beautiful, angelic, elegant dress, which really made Laura look like a beautiful little angel. After the baptism, I had my first and last arts and crafts time with Laura. We took her little feet and hands and inked them up and made a bunch of foot prints and hand prints and even cut a piece of her hair and put it in a little baggy as a keep sake. Her beautiful hair, so straight and soft. Hair that I will never get to brush or put up in little pig tails. I washed her little feet with soap and water, the only bath I would be able to give her. And then, I leaned over her bed, with my arm under her head, staring into her face, and cherished every minute I had with her before they pulled out the breathing tube. I thought about all of the things I would never get to do with her, like push her in a carriage or wake up with her at night or potty train her or teach her how to ride a bike or take her prom dress shopping or watch her get married or watch her experience the miracle of life that I had experienced just two weeks prior when Laura herself was born. One by one, my family members came up to her side and said their final farewells. I can't begin to explain how hard it is to look into your baby's face, who under the wires and tubes, looks healthy and have to tell the nurse "OK, you can take the tubes out now." I sat in the rocking chair, as the nurse and doctors pulled out the tubes. The lights were lowered to a softer dim. The nurse turned around and holding my beautiful baby Laura, with her beautiful white lace dress, walked over to me and for the first time in my life and Laura's life, I held my daughter... Her 4lb 8oz body felt perfect and so right in my arms. We fit like two puzzle pieces finally reunited after being in a box for so long. For half an hour, I watched Laura take her last breaths she would take on this planet. I patted her back and held her close to me. I whispered to her over and over, "it's OK, your going to a better place now, don't be afraid, I love you." And finally, after staring into her beautiful face, when I knew it was time, I leaned close to her and whispered in her ear; "it's OK, you can let go now." I kissed her on her lips for the last time and watched as moments later, she took her last breath...My beautiful little angel left this world at 4:40 pm on July 22nd. The saddest day of my life...

Friday, July, 23, 2010
Day one of Laura's new journey

Waking up this morning was a nightmare...I had realized that everything that happened the day before was real and none of it was a nightmare. I had the thought in my head that I had to get ready so I could go up to Boston and visit Laura. And then reality hit me hard when I realized Laura was gone. I started to look at the packet that the hospital gave be, on how to plan a funeral. At first I was tolerating the researching in funeral planning well, but then I hit that wall of reality again. The reality that me being only 20 years old, is planning my daughter's funeral. My Uncle Brian and Aunt Kerry and kids came by today, I find being around friends and family helps me the best with grieving. The more familiar faces and happiness other people bring to me, the better to keep my mind away from the sadness. In the early afternoon, I went to the funeral home with my mom and Uncle Brian and my grandparents met us there. With as less stress as planning a funeral could be, my family and the funeral director, helped me plan a nicely organized funeral.

I can not begin to say how thankful I am for such a loving family who is always there for me through thick and thin. It means the world to me to have my family help me out as much as they already have. From bringing food over or helping me plan the funeral or even just letting me know they are there for me and that they love me. And even though some of my family lives far away and out of state, just knowing that they are there to talk to really means a lot. There are no words that can say how much I appreciate my family and the things they have done for me. As for friends and co-workers, having their thoughts and prayers and for those who mentioned, a shoulder to cry on or an ear to talk to, really means a lot to me as well. There will be times I rather talk to a friend over a family member, so for all of those who offered an ear to talk to, I will definitely keep that in mind. Without my family, friends, and co-workers, I don't know how I would be able to handle this on my own...actually, I wouldn't even be able to handle it all. Thank you everybody for your support!!!

Funeral Will be held at the Keefe Funeral Home at 5 Higginson Avenue, Lincoln, RI, 02895. The wake will be Monday night July 26th with calling hours from 6pm-8pm and the service will be Tuesday July 27th at noon. Laura will be buried at Highland Memorial Park in Johnston, RI. All are invited to attend.

July 19, 2010

Saturday

Well Saturday started off good. My mom came to visit Laura and stayed awhile. Laura's sats were relatively stable throughout the day, in which she would only de-sat a little when she needed to be suctioned. Because of the major lung problem, Laura gets a build up of secretions in her airway that requires her to be suctioned and get a breathing treatment every four hours or so. Whats usually a nice easy routine to suction a sedated person by passing a suction catheter down the breathing tube in any other person, is a challenge in Laura. The process of suctioning Laura involves pouring lidocaine down her breathing tube to numb her airway because if not her heart rate will drop drastically as she vagals out (another medical lesson for another day). Then because she has a lot of pulmonary vascular resistance, Laura's blood pressure skyrockets as her sats drop and her heart rate drops. The room fills will alarms as all of her numbers go up/down. I've been through this routine waaaaaaayyyyy too many times, and it is only the beginning. If all of the beeping doesn't make your head spin, try throwing in the beeping from the vent machine as it warns the respiratory therapist that the vent is disconnected, every two minutes. And if that's not enough, add in the beeping from the pumps (IV machines) letting the nurses know the infusion is complete. All beeps, each a different pitch, a different pattern, a different warning. And, just when you think you've head it all, a new one throws you out of line. Its been less than a week of sitting by Laura's bedside to hear an alarm go off and know exactly which alarm is going off and why it is going off, without having to look up from my puzzle book.

Saturday Night[mare]

As the night went on, Laura's sats continued to drop little by little and instead of suctioning her every 4 hours or so, the nurse and respiratory therapist would suction Laura ever 2 hour and still her sats wouldn't get much better. Usually, I would leave Laura's bedside around 10 pm if I was going home for the night and around 11 pm if I was sleeping at the hospital. This particular night, midnight rolled around, and I found myself still by her side because of her fair condition she was in. To me, Laura looked more on the bluish side. I didn't feel comfortable leaving her. That "motherly" instinct was kicking in, telling me to stay. The nurse and RT (respiratory therapist decided to suction her, yet again. I took my spot at the foot of her bed and watched her sats and held my breath as her heart rate went down and back up again, like it always does. And down with the tube, they went again, as I held my breath and watched her hear rate go down and then right back up again. One more time they decided to try and get more secretions up. And one more time they went down with the tube. Again I held my breath and watch as her normally 150's heart rate went down: 130's...the vent machine alarm started to beep...then 110...104...the monitor alarm sounded...98...70's...60's....50's. This time it wasn't coming back up. I felt my heart race and my body go numb. In an infant like Laura, if a heart rate is below 60, CPR is performed. The "extreme" alarm on the monitor went off as the doctor and another nurse came into the room. "Start compressions" the doctor called out. The code button was pressed as the loud, distinctive beeps were sounded throughout the CICU. That noise that makes the hairs on your back stand up, the noise of a child (as painful as it sounds), dying. Within seconds, the room filled with all of the nurses on the floor. I backed up into the corner, tears filling up my eyes, a few slipping down my cheek, I watched as they did a round of CPR. The doctor yelled out for epinephrine and then sodium bicarb and then atropine to the nurses standing at the code cart that was wheeled to the room. Ice was placed on her head to prevent brain damage. Nurses ran back and forth delivering the meds to the doctor. Another nurse stood around documenting times and drugs that were pushed and other events. A nurse came over to me and asked if I wanted to sit and or if I wanted to leave the room. I couldn't talk and I couldn't take my eyes off of her. I was so afraid of losing her. After a round of CPR and a round of drugs, Laura's heart rate returned to normal. A chest x-ray was perform and showed that Laura had a small pneumonthorax (the same thing she had on day one) and it was relieved by a pleural decompression. Her blood gases that were taken before she coded and after she coded were relatively the same, so no harm was done. Since Saturday night, Laura's sats have been very good and her vent settings have been decreased due to her good vitals. That Saturday, I stayed by Laura's side till 2 am when I was struggling to keep my eyes open. It was so tough to leave her that night after I almost lost her. One thing is for sure...Laura is definitely a fighter!

Sunday and Monday

Sunday Laura remained on the high settings on the vent, just to give her a chance to recover and rest up after what had happen that night before. Her sats and other respiratory related numbers actually increased since the day before. No changes were made throughout the day and Laura had an excellent day with a just a few de-sats due to a need to be suctioned. Today, Laura did great as well. all of her sats and numbers were even better today so they turned down the vent settings a little, along with the nitrous oxide. Laura was put on a "vec holiday" to test how her neurologic functions were doing. A "vec holiday" (vec standing for vecuronium, paralyzes the muscles, so that Laura would be complete relaxed while the vent does its job) is when the vecuronium is stopped to make sure the patients neurological system is still functioning the way it should and that they are no seizures that are masked by the vecuronium. Once the patient proves that neuro is intact, he/she will be placed back on the vecuronium. Last time Laura had a holiday, it took her two days to come off of the vecuronium and prove that here neuro was intact. So not expecting to see anything today, I was working on my puzzle book, when I glanced up to see Laura, I noticed she was batting her eyes at me. Slowly her little eyes would open up about half way and then slowly begin to close again. The nurse witnessed the same thing while changing Laura's diaper. The doctor said that was excellent and Laura was placed back on the vecuronium. Due to the slow infusion rate, the vecuronium didn't totally come into effect until a few hours after it was placed back on. So for the few hours, I got to admire and cherish every moment Laura spent trying to open her eyes. Something so simple as eye opening, many people take for granted, and for me, excitement and happiness bloom inside of me as I cherished every second of her eyes being just partly open.

The rest of Laura's day went well, as she remained stable and good sats. Laura had a head ultrasound today to rule out any possible brain bleeds, especially after going through Saturday and being premature. The ultrasound came back normal. Tomorrow, the plan is to take Laura down to the OR to perform a chest biopsy. Very nervous about that. Just the risk of moving Laura out of her bed space and into the hospital outside if the CICU poses a threat for her being as sick and small as she is, never mind the procedure of making a small incision into the chest to grab a piece of lung tissue. But being as strong as she is, I Know she'll do fine. Hoping for some answers as to why her lungs are so sick!

July 15, 2010

One week old today and already my little girl has been through open heart surgery and a trip to the cath lab. This week has probably been the longest week of my life, without a doubt. IT is amazing how one's life could change so much in just a week. In one week, I experienced the labor and delivery process (and the beauty of an epidural), I experienced the miracle of life and hearing my baby cry for the first time, and unfortunately, I had to experience my child being sick, her first surgery. It all is definitely a lot to go through, but there are also a lot of stuff that I have not yet experienced this past week, that most new mothers experience in their child's first week of life. I have not yet held my baby in my arms or fed her, her bottle or picked her up and comforted her when she cried or gave her, her first bath or dressed her in her first dress. A lot of stuff I have not done yet, and with all of the down time I have when I sit by her bedside in the CICU all day and everyday, I Imagine me doing these things; kissing her lips, holding her and rocking her to sleep, talking to her and watching her respond, looking into her eyes, etc. But, I know, that ith her strength and all of the support she has, one of these days, I will be able to make all of those visions come true. The hardest part, has to be just sitting by your child's bedside, not being able to pick her up and hold her and comfort her.

So, What has happened since the surgery?

The repair of the coarctation of the aorta went excellent. Laura's feet have had good color and her heart is working well. However; for the past couple of days, Laura has continued to have many ups and downs in her oxygen levels. Every time Laura's oxygen levels will drop, the respiratory therapist would increase and or change the settings on the ventilator. Then Laura will be stable for a while and then randomly de-sat again. So basically, the respiratory therapist and cardiologist have been working together to try and figure out what is going on with Laura's lungs and how can they treat it.

Tuesday morning when I came in, Laura was on a machine called an oscillator. Her cardiologist for the day pulled me aside and in a very serious voice, explained to me that Laura had a very rough night and that she had a "life threatening" event during the overnight, in which her oxygen levels had dropped and they could not get her stabilized. The doctor also told me that Laura's lung problem was a "very big deal" because they did not know exactly what was causing it. The function of the oscillator is to take over the ventilator's position, but delivers oxygen in a way less harmful to her lungs, seeming as she is on very high settings for the ventilator. Laura had also been put back on high levels of the nitrous oxide. The oscillator is a tough machine to look at, when in action. The set up is the same as a vent, with a breathing tube and all of that stuff, but the way it works, the machine shakes and vibrates, so Laura's body kind of like pulsates and shakes while she is on it. Since then, Laura has been on the oscillator.

Today was a really good day compared to the ones she has been has. For most of the day, Laura stayed stable with very few de-sats. Then in the afternoon, Laura was taken to the cath lab, which was nerve-wrecking because as the cardiologist explained it, for most people, death is a very small risk, but for someone so sick and so small, the risk of some thing going wrong is a lot greater. About 2.5 hours later, Laura returned from the lab and her cardiologist chatted with me. Dr. Marshall, Laura's primary cardiologist, told me that Laura tolerated the procedure very well with no major events. Then, DR. Marshall explained that Laura's vessels in her lungs do not look not, but for the most part are premature. She continued on to say the way of treating the abnormal vessels are the same way immature vessels are treated: time. I was beyond relieved to hear that her lung problem will get better, it will just take a day a time. The downside, Laura will have to spend months in the hospital and a while on the vent. Day by day, she may be getting a little bit better, but in the long wrong, it will all pay off when she is nice and healthy.

For the remainder of the night, well until I left at 10:00, Laura's oxygen levels held off at good levels and had no de-sats, and hopefully stays that way. And as for tomorrow, tomorrow is another day and anther day closer to recovery!

July 12, 2010-First Open Heart Surgery-Coartation of the Aorta Repair

The sound of my six am alarm made my heart race. Any other morning and I would have reached over and pressed the snooze button for five more minutes of sleep, but this particular morning, after going to bed just two hours prior, I was wide awake. By 7am, I was ready to go, well not "ready," nobody can be physically "ready" for their daughter to have open heart surgery. Although Laura was the second surgery to go that day, I wanted to make sure to be there extra early so I could spend every last second up to her surgery with her. After the normal Boston traffic, I was by Laura's side by 9 am. Laura's nurse, Karen, my favorite nurse, came over and informed me that Laura's night and morning had been going very well so far. I could not have asked for a better nurse today because not only was Karen energetic and funny and down to Earth, but also introduced me to a BUNCH of helpful people from different departments who help make the parents stay as less stressful and most family oriented as possible. After talking to hospital staff and groups, I felt like I was able to focus 100% on Laura.

The wait to get to the go down to the OR was very long, never-wrecking, and physically exhausting. We watched Karen get Laura's traveling table thing ready and do her routine checks and paperwork. One o'clock went by and we were told the OR should be ready shortly and we go are hopes up as we thought any minute now. Slowly the clock ticked and two o'clock passed and no sign of the team coming to get Laura. Then the phone rang and the OR tech said they were ready for Laura. Again we got our hopes up as the clock slowly ticked on to three o'clock. By this point I was already tired, drained, and hungry, and the surgery had not even started yet. Finally four o'clock come and the team came up stairs to grab Laura. My parents were escorted to the family waiting room and I was allowed to go down on the elevator with the team. My heart was pounding and I began to shiver with a nervous cold feeling that ran through my body. Karen informed me that Dr. Hickey, the Chief of Anaesthesiology would be performing Laura's anesthesia. I was shocked, a world renowned anesthesiologist was going to be in the operating room with my daughter. To my surprise, Dr. Hickey was a very funny easy going doctor. He tried to break the ice and I just smiled, even though everything he was saying was going in one ear and out the other. We took the service elevators and then my first step off of the elevator was that site, the double doors. Those doors, tan with the big "OPERATING ROOM" in red and white written across the top. Those same doors that you see in movies and on television that at the time, just seems like doors. Those same doors intensified that nervous, cold feeling. And then, one of the doctors asked "do you want to kiss her?" I looked down into her face and all of those previous mentioned feelings went away. I just wanted that moment to last forever, starring at her beautiful doll face. The tubes and wires became invisible to my eyes. I leaned forward, and for the first time in my life, I felt my baby's delicate skin on my lips. I was close enough, to smell her baby scent. And then just like that, I watched those cold mean doors close behind her. I had to fight back my tears, the whole way back over to where my family was waiting for me. The nurse liaison began telling me how she would call or come talk to me throughout the surgery, letting me knowing how it was going. My head felt like an over fried computer, I saw her lips moving and I heard chatter, but her words were all scrambled.

About one hour passed, when I got the first phone call. My heart began to race as I answered the phone. The first incision was made and Laura was doing good. The nurse informed me that around 5:45pm, I would get a second update. Nervously, I did word puzzles and moved seats and started to become very antsy as 5:45 approached. I looked down at the clock again, 5:48pm. I started to panic and I know it is only three minutes past the time the nurse gave me, but in the moment, every minutes felt like an hour. Finally, somewhere around 6:00, I saw the nurse heading our way. I looked at her face for maybe a clue as to what kind of news she would be giving us...nothing. And then she said, "Laura's surgery is going very well, they are winding down now, and Dr. Pagula should be out within the hour to talk to you guys." I felt instant relief and satisfaction, but knew not to get my hopes up yet. About an hour later, the surgeon came out and informed us that she tolerated the surgery better than expected and that the repair went very well. He reminded us that now hopefully they can get her nice and strong for the second surgery and in 2-4 months perform the other heart surgery. I just reminded myself, "small steps" and "take it one day at a time."

We waited about an hour more as Laura was finished in the OR and then brought back to her room. It was amazing to see the little glowing beauty (literally glowing due to the biliruben pad). Laura was already starting to look better. The surgeons had done a side thoracotomy (incision was under her arm) instead of the center chest cut. Laura had her hat off and her furry little head was exposed, making her look more beautiful than ever. Finally, I decided it was time to go home and let Laura rest. I gave her a kiss on that little fur ball (my mom's term for Laura's head (Laura has a lot of hair)), and left the hospital floating on cloud 9. There is no better feeling in the world than to kiss my little girl. During the car ride back from Boston, I took a peaceful feeling nap, thinking to myself as I drifted off into sleep, what a beautiful and amazing daughter I have.

Tomorrow, it is back to Children's Hospital Boston to see my little princess. Tomorrow I plan on sleeping in one of the parents rooms overnight, so I will not be able to update on how she is doing postoperative until Wednesday. Maybe if I have my charger, I will write the blog from my phone, who knows.