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!

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.

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.

Past

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!

Present

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!

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....

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.

The beginning

Hello,

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.