Sunday, October 10, 2010

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.


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

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.

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.

Monday, July 19, 2010

July 19, 2010


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!

Thursday, July 15, 2010

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!

Monday, July 12, 2010

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.

Sunday, July 11, 2010

July 11, 2010

Today was a very good day at the hospital! I'm starting to get more and more comfortable day by day and starting to get the idea of what routine to follow and how things work being a ICU mom. First, I just want to say how fortunate I am to have my family and friends. Without everybody, I definitely would not be able to do this. Secondly, I want to confess, and I feel awful for doing so and I am definitely going to try to change, immediately...but I have been treating my immediate family, not the way I should be treating them. With all of the stress going on and early mornings and late nights and long days and changes in hormones, I have been very short tempered lately and snappy. I need to realize that my family is just trying to help me and give me the extra support I need. Now I got that all off my chest, onto Laura.

Laura had a great day today! When I walked into Laura's room, she was on a glowing green mat, which I found out was because her bilirubin levels were high, which is very common in newborns. So I was not taken back by the news. Laura's nurse had informed me that Laura had no significant problems on the overnight and that her sats her holding up good. The nurse, Joanna, also informed me that Laura had been weened down on her nitric oxide and was holding up good. Laura's doctor came in and to my surprise told me they were going to operate tomorrow. I did not think it would be so soon that Laura would have the surgery.

So tomorrow they are going to be fixing Laura's coarctation of the aorta. This will be the biggest of the surgeries she will need. Coarctation of the aorta is a narrowing of the aorta, which is the heart largest vessel for supplying blood to the rest of the body. Once the this problem is fixed, she'll be weened off of the breathing tube and then fattened up like a turkey for the next surgery.

Throughout the day, I met with many different cardiologist fellows and surgeons and anesthesiologist. Each one explained their parts in the surgery and the risk and answered questions and had me sign consent forms. Despite of the reason I was signing the consent forms, one of the forms made me stop and think to myself; "I'm her mom, I'll be making decisions for her and signing things for her throughout her life." Just the simplicity of signing that form brought happiness to me because I now share that "gift" most moms talk about. Just knowing that I am a MOM really brought light and happiness to me in the situation of signing papers for open heart surgery. I guess in all, it is moments like that, that keep me sane throughout this whole journey.

When I arrived from dinner, I was informed that Laura was completely removed from the nitric oxide and her sats were holding up very well. I was so thrilled to see an "up" in the journey, because just the other day I was mentioning how I had to get used to seeing "downs."

In light of everything, I find it funny how Laura, although deeply sedated, already has a stubborn, but cute little attitude to her. I was getting ready to leave and she started to de-sat a little. The de-sat was nothing major, but enough to cause the respiratory therapist and her nurse to try and bring up her oxygen levels. Just like yesterday, the nurse and respiratory therapist suctioned her and gave her an albuterol treatment, because she was tight (narrowed air passages) and just like yesterday, her sats stayed the same, low. By now, I am getting used to her routine of doing this. They called for a chest x-ray to make sure the tube was in the spot. And just as x-ray gets to her room, what do you know, but her sats go back up to normal. Same exact routine as yesterday and according to the respiratory therapist, same routine she pulled on the overnight. So the respiratory therapist told me, as did Laura's nurses, that Laura seems to like being the of attention and that when people are not paying attention to her, she will make sure she gets their attention. A very stubborn little one, just like she put me through eight months of pregnancy. So once relieved by the fact that she was stable, I went home.

So tomorrow is the big day, the reason I came to Children's Hospital Boston, and the reason I can not sleep tonight. I will say my prayers and hope as many people out there who know about her surgery are sending their thoughts and prayers as well. Because of her smaller size, the doctors told me this surgery's complication level doubles. So lets hope for the best!

Saturday, July 10, 2010

The Journey Begins

Day 1-July 8th 2010

Seeing Laura for the first time since birth was definitely a, more or less, memorable one. I had a ton of feelings all hit me, the first look I took at her. All I could think of was how beautiful and precious she looked and so tiny! During my whole pregnancy I was expecting to have a larger baby, so to see something so small and tiny, caught me off guard. The first trip to the cardiac intensive care unit (CICU). Was very overwhelming. So many people introduced themselves to me and ran about. I had a million faces and names to remember. The best part was looking at the little doll of a face she had and see her breathing on her own. So many people explained so many different things, but no one told me everything that was wrong and when/who/what/where/and how everything was going to be fixed. It was day one I learned my first lesson of being an intensive care mom...take everything one day at a time. Doctors don't always have all of the answers and that a lot of test and procedures take days to answer. The room was quit with one doctor by Laura's bedside examining her, when one of her machines start to beep. I noticed her oxygen saturations (levels or oxygen) started to drop drastically. I notice the doctor start to panic and reach for a BVM (a breathing device) and start to bag her, and yelled out for some help. He reached up and pressed the code button and within minutes, doctors and nurses rushed into her tiny ICU room. I heard someone yell out begin compressions. My heart sank and I felt tears begin to instantly fill my eyes. I thought to myself, "don't cry, your her mother, you need to be strong for her." A nurse helped me out to the hallway and let me watch over it all. She explained everything step by step in complete detail and held my hand and would gave me a play by play update of what was going on. Children's really does a phenomenal job at including the parents. The toughest part was watching them intubate Laura. Being an EMT, I have practiced intubating infant manikans. But nothing prepares you for the sight of your daugther being intubated. Knowing that she is in respiratory failure and her life counts on the person holding that larygnoscope. Laura was quickly intubated and a chest tube was placed on her right side due to a spontaneous pneumonthorax (pocket of air in part of the lungs it shouldn't be) she had developed while having a a test done in radiology. Once the breathing tube and chest tube in, Laura's color instantly came up to a nice pink color and the commotion died down. Larua's first down in the CICU, on of many, unfortunately, I must prepare myself for.

July 9th, 2010

2nd day in the CICU, and Laura was already giving them a run for their money. Her sats were constantly dropping and rising, but the good thing, no significant drops. Just a lot of repositioning her and trying different things. I only got to visit quickly this day, Laura had a bunch of places to go and test to do. Two days old and already a busy little bee. However, one of the biggest most memorable moments about this night was when I was all by myself in the room with Laura, I started talking to her. She started to bat her eyes and try to open them as I got glimpse of the white part of her eye. I kept talking to her even more and then she opened her eye all the way and looked at me with her gorgeous eyes. She closed her eyes after that. What melted my heart was knowing that she recognized her mommy's voice. She looked at me and I looked at her and felt that feeling of love just make my night.

July 10, 2010

Today I was discharged from Brigham and Women's hospital. The day started off in a good mood and I was beyond thrilled to get to see my little princess again. When I got to her room, I found out they had decided to keep her heavily sedated so her body can rest up for her first big open heart surgery. The doctor informed me that the surgeons were planning on operating at the beginning of the week and that they would be in more over the next few days and would meet with me and explain their goal. The doctor explained that her first open heart surgery would fix her coarctation of the aorta. Then once she got a little bigger, any where from 2 months to 6 months, they would fix the atrioventricular canal defect. Throughout the day, I kept getting overwhelmed with all of the surgeries and the long road of recovery she has a head of her. Now, I have come to conclusion that I need to take everything one day at a time and that is all I can do. Pray and hope for my little Laura and let everything fall into place from there, Laura also had more of the de-sats today so they decided to switch Laura over to nitrous oxide, which should help with her breathing. When I left for the night, Laura was doing well, keeping her sats up. Ultrasound came in and did an ultrasound on Laura's head to rule out any brain bleeds. Tomorrow more surgeons will be in the room th talk to me and examine Laura for surgery. So tomorrow I will update any information about surgeries and how the results came back.

Boston Begins

Wow, I really fell behind again, so I'll jump right in!

We decided to deliver and Boston and continue all care there until Laura is born. We told Dr. Ford, and she agreed with us and instantly made phone calls and referrals. Within that day, not only did Children's Hospital-Boston call, but also Brigham and Women's Hospital. By the end of the day, I was already registered and mine and Laura's records were already being faxed over. Everything started moving so fast. By the following week, we were scheduled to go to Boston for a day of doctor appointments, all taking place on June 30.

June 30th

On the day of June 30th, we left bright and early and arrived at Brigham and Women's Hospital for 9:00. First appointment was the ultrasound, in which went ok. Laura weighted in at 5 lbs 3oz, not too much heavier than she was three weeks prior to this, but I was not too concerned because ultrasounds vary so much in weight. Everything else was the same as to how the previously level II ultrasound looked. One thing noted on this ultrasound was that I had extra amniotic fluid, in which i was told not to worry and they will follow up until I deliver. Next I met with the nurse and then the doctor for a quick visit. There he told me, he would like to see me up in Boston every week until I delivered. He also mentioned that they would like to induce me around 39 weeks. From there we grabbed lunch and then head to the Children's Hospital Boston where I had the fetal echocardiogram done. This ultrasound was torturous, because I was so nauseas from eating too much and not having space due to Laura taking it all up. Finally it was time to go home, and for the hour drive home, I had to fight back the nausea, again. Once home, I ran to the bath room and vomited and still felt crummy, when usually I feel 100% better. I was totally unexpecting what happened next to happen....

Night of June 30th-July 1st

Throughout the night I had nausea and vomiting increasing more and more with the contractions I would get when I knew I was dehydrated, just the tightening of the uterus. I tried to drink plenty of fluids, but that was unsuccessful, and the fluids just came right back up. By mid night, I had my head hung in the toilet dry heaving and only vomiting stomach bile. I called out of work for thursday and thursday only, figuring it was just a passing bug. Well 1 am passed, followed by 2 am and so on, each hour, being too stubborn to go to W&I Hospital for relief. By sunlight, I was in so much discomfort with nausea and dry heaving and being dehydrated, I began to realize I had waited too long, which I would soon pay for.

Women and Infants Hospital

That fast 15/20 minute ride seemed to take forever. Once at W&I, I got triaged right away and the ER nurse was all calm and asking questions and then listened to the heart rate with a doppler. Instantly, his eyes widened as we went around the corner to make a phone call. Minutes later, he rushed me to the big ER room that W&I hospital has and told me he was concerned and the heart rate was down in the 90's. Within 10 minutes, the room was filled with doctors, the OR was ready, and I was near prepped, answering a questionaire about anesthesa. I was told that I was having my baby today. My eyes filled with tears, as I feared for the worse. Only minutes later after squeezing a whole bag of fluid into me, her heart rate came up and the OR was told to stand down. I was reunited with my mom and finally given something for nausea. From there, they moved me up to labor and delivery just in case becaus eI was having a few contractions, none of which I felt. Still feelin extremely nauseas and vomiting, they tried everything, nothing working with relief. By ten pm that night, I was extremely uncomfortable with nausea when my ob/gyn came in and informed me he wanted me to be transfered to Brigham and Women's hospital, just to be on the safe side because I was still having contractions, none being more than a tightening of the uterus. The ambulance showed up, as odd as it was me being the patient being transferred, all of my stuff was gathered and I was on my way to Boston. I never dreaded the trip as much as I did then, feeling so crummy. Once we got to Boston, I started feeling some contractions on the painful side, but tolerable. I was brought up to labor and delivery and monitored there for a while. After being sure I wasn't going into labor, I was moved up to the women's floor, where sick pregnant people and new mom's with health problems interferring with pregnancy went.

July 1st-July 7th

I thought I would only be staying a day or two at the Brigham. I figured it would be enough time to get rid of this non-stop nausea/vomiting issue. The nursing staff was a great group of people that I really got to know as day by day I became closer with them. Each day I would go for test after test to try and figure what was causing the nausea. I was mortified thinking about spending three weeks with that constant nausea and vomiting and thought for sure that no matter how crappy I felt, I had to deal with it, because they weren't letting me go home till it was better, nor were they going to induce me any easier than 39 week.

July 7th

36 weeks and 3 days, I went for an x-ray on my stomach to rule out any stomach problems and then went for my daily non-stress test I had been going for daily at the point. This time, the monitoring was very uncomfortably because I was having contractions about every 5 minutes to 10 minutes, just painful enough to cause me not be comofortable and function normally. So when I got back from the test, I was checked and told I was closed (not dilated at all), but that the head was very low and that I had a bulging bag of water. The thought of delievering didn't even close my mind. I figured, if I was going to deliver anytime soon, I would at least start to dilate a little. Cass and Will came to visit me that afternoon, with some of the contractions strong enough to make me pause in conversating, but nothing to write home about. That night, I had a different nurse, that I had never had before. I tried eating again, but immediately vomited and was having a combination of very strong contractions, nausea/vomiting, and random left flank pain. I called for the nurse and she hooked me up to the monitors and confirmed that I was contracting every 3-4 minutes and called downstairs to labor and delivery for a consult. A young med student came up stairs and confirmed, that I was still closed. I was so annoyed, all of that pain, no dilating and no relief from the nausea and vomiting. The nurse asked if I wanted anything for the pain and I said no. She left me alone for the night. Around 2230, I tried going to sleep, but found out very quickly it was going to be a loooooong night. I text my mom telling her, nearly crying in frustration, how I was having contractions that wouldn't go away, every 3-4 minutes, and my nausea, vomiting was worse than ever. I stood up to try to walk and maybe get rid of some of the pain, when I felt a slight pop and fluid just pour out of me. I was shocked! I stood still in astonishment, totally not expecting it. I called my nurse in and within minutes, I was being rushed down stairs to labor and delivery. The contractions picked up and so did the pain. I was given an epidural, and felt awesome and pain free. From there, I napped a few hours. 0600 I was checked and measured 4 cm. The ob/gyn wanted to wait for day time and then speed up my contractions, that way more specialist and teams of doctors would be ready for the delivery. At 0830, they decided they would check me and then wait to 1000 to start the pictocin to speed up my contractions. However, Laura waisted no time and by 0830 I was fully dilated. By 0930, my room swarmed with people and medical teams all dressed up and ready to go. I started pushing and half an hour later, Laura was born at 10:05 am weighing just 4lbs 8oz and being 19 inches long. Hearing her cry was breathing taking. It was the best feeling in the world to hear her cry and know that she is a fighter. I was able to hold her for a quick few seconds on my chest and then she was hurried away to Children's Hospital Boston. As for me, my nausea and vomiting miraculously disappeared. And for Laura, her journey was just about ready to begin.

Wednesday, June 16, 2010

33 Weeks Pregnant

So, I figured it's about time I update this blog on Laura's condition and ALL of the new information I have received since the last time I wrote in the blog. Take a seat, because a LOT has happened since!

Catch Up!

Last time I left off writing in here, I was devastated and very discouraged. I felt as though I was fighting a losing battle after hearing all of the problems and negativities the doctor had put into my head. I was faced with the decision on whether or not to go through with the amniocentesis. I decided to go ahead with the amniocentesis, even though Jon was not comfortable with the procedure. I chose to go though with the amnio for many reasons. First of all, I wanted to be prepared for what lies ahead; prepared for any arrangements I would have to make to raise a Down syndrome child. Second of all, the stress I was going through was unreal. Not knowing what to expect when my child is born, really distracted me and my thoughts all day every day. Finally, I decided it would be best for the doctor's sake to know what to expect from my child when she was born (ex: whether or not she would make it full term, relating problems caused by genetic condition, preparing for other problems that are not visible on ultrasound). Although Jon was not comfortable with me getting the amnio done, he said he would still be there for me and support me during the procedure.

The Procedure

The day of the amniocentesis, I was a nervous wreck! I tossed and turned all night long and got no sleep. I feared the worst of what would happen. I was told, because I was 26 weeks pregnant, the procedure would be done in the ER at Women and Infants Hospital, so that if something was to go wrong, they could deliver the baby and bring her up to the NICU where she could have a chance of survival. Once in the room, I was warned of all of the risks, my worst fears, and again the procedure was explained to me. The doctors prepped my stomach and looked for a good spot to perform the procedure. This process itself seemed to take forever. Finally they were ready and inserted the needle. To my surprise, it was a little uncomfortable, but nothing compared to what I was getting myself all worked up over. The procedure itself was more nerve-wrecking than painful. When they were almost finished, I saw Laura start to reach with both arms and legs toward the needle, which seemed like no big deal to the doctors so I could not help but laugh to myself. Once they took the needle out, I had a small contraction, which is normal, and was monitored for a good half hour. After that I was sent home for the nerve-wrecking 3 day wait. Every time someone would call me, my heart would start to race as I prepared myself for the possible bad news. Finally, day 3 came and when I saw that it was the doctor calling, my heart nearly stopped. I sat down where I was and answered the phone. The "hellos" were all a blur to me, when suddenly she said to me..."I have some ascending news for you!" And instantly I felt a sigh of relief as she told me Laura was free from trisomy 13, trisomy 18, trisomy 21, and down's syndrome. Next she told me, that Laura is definitely a girl as they identified two X chromosomes. I was so relieved and at the same time upset with myself for not listening to Laura's kicks of encouragement she had tortured me with the weeks leading up to this particular day.

Appointments, Appointments, and more Appointments

After having the weight lifted off of my shoulders of the possible genetic/chromosomal problems, I went to two more appointments with the cardiologist. Dr. Ford the one who I have been seeing all along said she still sees a problem with the aorta, possible coarctation of the aorta, but can not for sure make the diagnosis. However; she did not agree with what the fetal specialist had diagnosed the problem to be, double outlet right ventricle. Dr. Ford thought it was best to get her colleague's opinion, Dr. Fiet, on what he thinks is wrong with Laura's heart. So about 4 weeks after I saw Dr. Ford, I went into see Dr. Fiet. Dr. Fiet was really nice. He had a good sense of humor and made me feel less nervous, just like Dr. Ford. Dr. Fiet's diagnosis, however; has a new diagnosis to add to drawing board. He came up with, in addition to there being a problem with her aorta, "Atrial-ventricular canal defect" or AVCD, which is instead of having a mitral and tricuspid valve, she has one big valve going straight across, causing there to be a big hole in the center of her heart, (Its tough to explain, but if you google it, it shows a better picture of the problem). This problem can also be easily fixed with open heart surgery. So after meeting with Dr. Fiet, I was scheduled for one more appointment with the cardiologist, Dr. Ford, where hopefully she can make the final diagnosis before Laura is born.


Also in the past, (don't worry, I'm almost all caught up!), was the baby shower! Last Sunday was the baby shower, the 13th of June. The baby shower went very well, as I was starting to stress out because the planning and preparing was not getting done until the last minute. However; my mom and Cass pulled it all together for an awesome day of memories. There was a lot of stuff I got, but also, a lot of stuff I still need to get. I'm not worried though because everyone tells me to buy the most important stuff right away and then buy stuff that I need as I need it. Sounds like a good motto to me! The only down fall to my baby shower was my dad and Maddie could not make it because they had a softball tournament to go to, which kind of got to me at first, but then I forgot that they weren't even there, during the shower itself, so its all good.

These past few weeks, I have definitely turned into a nesting pregnant woman! I cleaned my room from top to bottom, scrubbing the floors on my hands and knees, re-painted and designed my entire room all over again. Although its not done yet, after weeks of working on it, the room is very close to being complete!


So now that I am finally all caught up on this blog, I hope to continue to keep up with it, which should be easy seeming I spend my nights tossing and turning and watching t.v. due to these pregnancy hormones and beach ball sized tummy of mine. My next accomplishment, once my room is complete is to put together the nursery! I already got the bed set, a purple jungle theme, which is absolutely adorable! Soon I will go through the painting and scrubbing and designing Laura's room so that the room will be a complete nursery, awaiting Laura's arrival.

Before my next appointment, I must make yet another important decision: deliver in Boston or deliver at W&I Hospital. In the long run, the place of delivery comes down to my decision and that decision has to be made by Friday, June 18th at noon, when I meet with the cardiologist for the last time. If I decide Boston, the referrals will be made after the ultrasound and all of mine and Laura's care will be transferred to Boston ob/gyns and cardiologists. If I decide to deliver at W&I hospital, then once she is born, she will get sent to the NICU where they will stabilize her and access her. Once Laura is stable, she will be transported via ambulance to Boston Children's Hospital, where she will have the surgery. The pros of delivering at W&I hospital is I can be close to home and have my family near by for the support I will need. However; if I decide to deliver in Boston, then I will deliver at Brigham and Women's Hospital and once she is born, they will bring her to the cardiac intensive care unit where she will be stabilized, accessed and prepped for surgery. The pros for delivering in Boston: next door to the best pediatric cardiology hospital in the country, so if anything goes wrong, I will not have to worry about the hour ambulance transport ride to Boston that would be a factor if I deliver at W&I Hospital. Other pros are, I will be right next to my little girl at all times. The cons of delivering in Boston: far from home, not much family and visitors for support, and everything will have to be planned, nothing about the whole labor process will be normal for me. I know the decision is obvious but making the choice final is the tough part, knowing that once that induction date is set, there is no turning back. This is where I have to open up to change and accept the fact that my pregnancy is different from most and that I have to do what is best for my daughter.

Now that I am caught up, I will definitely post how the appointment goes Friday with the referrals and any new diagnoses.

P.S. Laura is still kicking strong and topping the scales at 4 lbs 3 oz! According to the last measurement of her size, she is a week and a half ahead of where she should be, which is excellent news for a fetus who doctors term "sick." Laura is still showing them whose boss and giving them a run for their money by moving like crazy, playing tag, when they try to figure out what is going on with her heart. Now that is my little girl!

P.S.S. I have to start breaking out the bows and hair ties because according to the last ultrasound, Laura already has hair growing on that little head of hers!

Wednesday, April 14, 2010

Level 2 ultrasound

Today was my level 2 ultrasound at the prenatal diagnosis center, and it went diasterous! Well first of all to start with the good stuff, Laura is growing normally and measuring 24w 5d and I'm, according to my due date, 24w 3d. Laura is definitely a little chubby one weighing in at 1lb and 9oz! Still a stubborn little one, Laura definitely hates ultrasounds! She kicked a bunch and moved all over the place. At one point, she kicked the ultrasound wand so hard that the picture on the screen shook. Then the ultrasound tech showed me, Laura sucking on her thumb, it was cute because I got tosee her little mouth moving and opening and closing. Laura was even caught on the ultrasound peeing. Then the doctorr came in which completely ruined my day and gives me the reason to hate that place. This doctor was in the room looking at the ultrasound for only about 10 minutes and he had no bedside manners whatsoever. All of the other doctors I have had were in the room for a while, trying to figure out what is wrong and checking up on her other body systems. However; this guy actually and finally got a diagnosis of what is wrong with her heart. He said she has a ventricular septal wall defect, which I had to look up on my own, but it is a very common heart problem and can easily be fixed. He also started saying something about the vessels that leave the top of the heart are more to the right side than the left side, which I'm not exactly sure of how to look that up because he didn't give me a medical term and didn't explain the details. So once I go back to the cardiologist, I'm sure I can find out more. If the heart problem wasn't enough, the doctor continued to mention the possiblities of chromosome problems and how common heart defects are with these sort of disorders. And then once the doctor was done, he asked if we had any questions and rushed out of the room not telling us to follow up or anything. So, basically, I left the place in a very bad mood.

After the bad news, I face the decision to have the amnicentesis or not. Before, I was completely againt the amniocentesis because a lot of babies are born with heart defects and no other problems, so I figured let's just wait and see. However; after todays appointment, I am highly considering getting the amnio done because of the problems that presented in the ultrasound today. That and after researching the risks and threats of the procedure, wich nowadays are very minimal, I much rather be prepared for the possibility of more birth defects due to the possiblity of having a chromosomal/genetic disorder.

I feel that the hardest part of this whole process is admitting to myself that she does has a problem. It is tough to believe she has a problem or defects or is not completely healthy when I feel her kick all the time and kick at any thing that puts pressure on my uterus. How can she be so lively and healthy feeling from the outside but in reality she has a problem? Another tough question I face is why me and why my daugther? It is tough seeing all the people my age who are having kids or had kids, talk about having normal children or normal delivers, all of which I probably won't have or won't be able to experience. People should be very fortunate of what they have, because I would do anything to have a normal delivery, with normal contractions, and a normal, healthy baby with no visits to specialists or high risk ob/gyns. Anything....

Friday, April 2, 2010

Pediatric cardiologist appointment

Today was my appointment with the pediatric cardiologist, and let me just say, the wait for this day to come took forever! Not only did I have to stress about this day and what news I may get from the doctor, but I also had to stress about trying to find someone to cover my shift at work, which is apparently a very tough thing because no one wants to work on good Friday, especially drive all the way to Bristol to work. So I'll probably hear about it from the higher ups from my work about how I called out, but who cares, my daughter is much more important than work anyways. So now I got my venting spree out of the way, I can tell you about how my day at the doctors went.

First of all, I would reccommend the pediatric heart center of hasbro to anybody who needs their services. The team there is really nice and has awesome bedside manners and a good set up. The cardiologist, Dr. Ford, is really nice, she seems to know her stuff and was very determined to come up with a diagnosis. Plus, Dr. Ford recognized me from work from doing a NICU run a couple of months ago with her. I did not recognize her right away but once she said something, it made me remember her.

As for the ultrasound, it lasted just over an hour, which Laura made it very amusing this time. The first half went by so slow and Laura was a good girl and cooperated by letting Dr. Ford take some of the pictures that she needed. Then, about half way through I felt Laura wake up and start to move and could only think of how much she hates ultrasounds. Right I was because seconds later, the screen that was filled with a picture of Laura's beating heart, suddenly because empty as, I quote, "uh oh she ran away on me." Yes thats right, Laura decided to up and leave. So basically for the last half hour of the ultrasound, Laura decided to play hide and seek and "kick the ultrasound wand." She is definitely a quick little sucker, and a fighter...that is for sure.

So after having a good chuckle, Dr. Ford stated that Laura is an "interesting" case because after an hour of looking at her heart, the only thing the doctor could come up with is the same as the other doctor; an aortic arch problem. However; better stated by Dr. Ford than the other doctor I saw last week, she thinks Laura has coarctation of the aorta, which is basically a narrowing of part of the aorta. The good news is, her heart rate is right in normal range and she has no heart murmurs. The bad news is Dr. Ford said she can not exactly pinpoint the problem yet because Laura is too small, so for now it is backing to the waiting game. So, in four more weeks, I go back to Dr. Ford so she can do another ultrasound/echocardiogram where hopefully she can get a better view of the heart and its structures.

Lately, I have been feeling a lot more optimistic than I did the past couple of weeks. With all of the praying and support from family and friends, and the excellence in the hasbro pediatric cardiac team, I feel as though Laura is in good hands both spirituallly and physically. Laura has also put me in awe by the way she has proven to me that she is a fighter. Everyday, throughout the day, she'll have her random work out sessions where she kicks, non stop, for a good half hour to an hour straight. This is when I become puzzled because from the outside, she kicks and moves and responds to my touch by kicking back, but in reality she has a problem and she is not 100% healthy. But, I have faith in my little girl. I like to look at her kicking and such as her way of telling me "hang in there mommy, be strong, I'm fighting this so don't give up on me and I won't give up on you." So for now, I'll keep reminding myself to take it one day at a time and enjoy the kicks and movements that Laura shares with me.

Sunday, March 28, 2010

The beginning


So here is how it started:

On March 2nd, I had my 2nd trimester structural ultrasound. I was so excited, because this was when I could find out the gender of my little peanut. Up to that point everything had been normal, I was healthy, the fetus was healthy and measured to a good size with a good heart rate. All my blood work had came back normal and I was enjoying being pregnant with many pregnancy cravings and absence of morning sickness. The ultrasound went great and we found out I was having a little girl! Although we were both hoping for a boy because of the over abundance of girls in my family, we instantly fell in love with her even more. Still overwhelmed with happiness, my fiancée Jon and I came up with a bunch of activities and hope and dreams for our little girl that she would experience starting from the day she is born. Jon and I both decided on the name Laura, we fell in love with the name instantly.

Two weeks later, I returned for another ultrasound so they could get another view of her heart because of her being poorly positioned the time before. I remember sitting in the waiting room reading an article in a parenting magazine about a mother who was on her third pregnancy after having two previously miscarriages. I remember thinking to myself, "how do you react to such bad news when you see an ultrasound with your baby not being healthy" or "that must be devastating for parents to get such bad news." And then, I went onto think how fortunate and happy I am to have a problem free pregnancy. Shortly later I was called into the room and stared at the screen in awe as my beautiful baby girl kicked and wiggled. After the ultrasound, I met with the doctor, where he told me her heart looks to be a little bigger on one side, and that I would have to go for a level 2 ultrasound, but not to worry yet because most of the time the baby turns out to be fine. The next couple of days, I was a little worried and nervous but nothing to lose sleep over.

The following Monday, Jon and I went to the prenatal diagnosis center for the level 2 ultrasound. The ultrasound was performed and her little female parts were confirmed. Both Jon and I waited anxiously for the doctor to come in. When the doctor came in, she sat down and said with a serious face: "there are some abnormalities with your baby's heart," "I don't know what exactly is wrong, all I know is it does not look normal to me." My heart sank into my stomach and fearful thoughts ran through my head. Then the doctor continued to pour out more bad news: "in addition to the heart abnormalities, your baby has some hydronephrosis (extra fluid around the kidney), and a very small mass in her pelvic region." The doctor continued to tell me that with multiple system abnormalities, makes the fetus a high marker for a chromosomal/genetic problem. The ride home from the doctors was a nightmare... I lost it, I called my mom and cried to her. I never thought that this would happen to me.

Two days later, we return for the fetal echocardiogram, in which I was told they would be able to tell what exactly is wrong with the heart. After and hour and a half of the echocardiogram, the doctor turned the machine off, looked at us and said "I'm not sure exactly what the problem is, but I am pretty sure the problem is with the aorta."

Four days later, today, I decided to start my own blog, not only to "vent" and relieve some of the stress of what is going on, but to also get as many followers as possible. Baby Laura will need a lot of thoughts and prays to make it through and fight through her health problems. I was told she will definitely need heart surgery. The question of how many and what type and the prognosis will hopefully be answered on Friday, the 2nd of April when I meet with the pediatric cardiologist. So, now the battle and slur of doctor appointments begin.

"How are you handling this?" "Be strong!" "I couldn't imagine getting bad news like that." "How are you feeling?" "We are here for you, if you ever need us." These are some of the few questions and remarks that we get when we tell people about what is happening to our daughter. So, to answer the questions, my best response is that it is a very tough process. The waiting game is horrible. I try to research answers and more information online, but it is kind of hard when you do not know for sure what is wrong with your daughter. There are a lot of questions I have, some are: "Will my daughter have downs syndrome?" "Will my daughter make it to term?" "Will my daughter make it to her teenage years?" "What kind of ride am I in for?" Unfortunately, these questions can not be googled or researched. Only time to tell and that is the toughest part yet. I am the type of person who has to be in control and know everything right now. So far, I have learned that the best way to make it through each day; is to occupy myself, be around friends and family, pray, and remind myself to take everyday, one day at a time, and that is all you can do. So until my next appointment, all I can do it wait and follow my own advice.