Friday, July 23, 2010

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 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.

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