CHD Awareness Month

February is CHD Awareness Month, with Feb. 7-14th being CHD Awareness Week.

Of course, if you are reading this blog and keep up with all of the Lu updates, then you already know about Congenital Heart Defects. Most of you even know about how common CHD is and that it affects about 1 in every 100 children born in the U.S., and even more in other countries. But how many of you knew about CHD before you learned about Lu or had a close friend or family member who was affected by CHD? The nurses on the pediatric floor, when Lu was first admitted to the hospital for a misdiagnosis of pneumonia, didn't even know about CHD. That should tell you how important awareness is. Information is key when it comes to our children, especially when you are dealing with the #1 birth defect.

Before Lu was diagnosed, I had never even heard the words "Congenital Heart Defect," nor did I know how extremely common it was. As a person who worked with babies and children for a living, and someone who was planning on having children, I should have known more about CHD. I should have known about the signs and symptoms and I should have known how prevalent it was. I should have known that, every year, approximately 4,000 babies will not live to see their first birthday because of Congenital Heart Defects and when I got pregnant, my care provider should have told me about Pulse Ox Testing.

This is why we take awareness so seriously; because people like Cora's mom didn't find out about CHD until it was too late.

So please help us raise CHD awareness. Your knowledge and the choice to share it could save a life.


This is what we are doing to help Little Lu spread awareness:

- Feb. 4th is the Pediatric Heart Foundation 5K run/Walk in Boca Raton, FL. Here is a link to the Facebook event. Little Lu's Crew will be participating and you can join our team or donate by visiting this LINK. We would also appreciate it, if you could share our team page through email or on your Facebook.

- Sharing videos, pictures, stories, and informational links on Facebook is a huge way to spread the knowledge. Keep an eye out for this stuff on Lu's new Facebook page and feel free to share any information that interests you. Here are two links to CHD videos of Little Lu: http://www.youtube.com/watch?v=87ZvdrjWNlA and http://www.youtube.com/watch?v=93LCeRnJ4ys Please share! This is how potentially life-saving information spreads! Thank you!

- For the month of February (or the week of Feb. 7-14), Lu supporters and some of the CHD community are changing our Facebook profile pictures to this logo (which was designed by Lu's daddy):

We thank you for all of your support and don't forget to share Lu's blog, especially the CHD Information page! <3

Celebrating One Year With a Healthy Heart

January 3rd, one year ago, today, Lu was at All Children's Hospital in St. Petersburg, FL, recovering from open heart surgery. My husband and I sat by her side while she slept, listening to the machines beep every time her newly repaired heart beat with more power than it ever had before. On this first night, her color was better, her oxygen levels were higher, and her respirations were less often and more productive. It was a great feeling.

As our time in that hospital room went by, her condition improved every second that the blood flowed through her heart like it was supposed to. After only a few days, she was eating full meals and scarfing down bottles. She whined and cried in discomfort at times, but most of the time she handled her ordeal with grace and determination. Although it was a tense and stressful time, those 4 days in that hospital room were the happiest moments of my life, up until then. I was finally able to believe that my daughter would lead a normal, healthy, and happy life. I was ready for 2011. It was going to be incredible!

2011 has definitely lead up to my expectations. It has been a wonderful year for our family, just watching Lu grow, play, and learn. She will be 18 months in 3 days and she is right on track, physically and developmentally (or "way ahead of the game" as her Daddy proudly admits). She is talking so much and can say hundreds of words and full sentences. Her favorite phrase (or demand) is, "I want to go OUTSIDE!" She loves to play outdoors, enjoys spotting airplanes in the sky, climbing EVERYTHING, and waving hello to the moon. She loves shoes and carries a purse around the house that is full of Matchbox cars. Her favorite movie is Toy Story and her favorite pajamas have Lightning McQueen from the Cars movie on them. She still eats very well but prefers black olives, scrambled eggs with spinach, pizza, blueberries, and PB&J sandwiches. My favorite thing that she does is at night, right before bed: she will climb on the couch and walk to one end where I sit, give me a sloppy kiss, then walk to the other end where her daddy sits, give him an even sloppier kiss, and then repeat that same sequence of kisses about 5 or 6 times.

Playing "OUTSIDE!"

Loving on her Daddy

Since my last post, we celebrated Halloween, Thanksgiving, Christmas, and New Years. Each holiday her 2nd experience of them, but her first with a healthy heart. Christmas was a great experience for her this year because of her good health and more understanding age. She didn't like sitting on Santa's lap as much as she did last year but I think she was just more interested in running around the mall. She really liked looking at houses decorated with Christmas lights and excitedly pointed out every time she spotted a blow up snowman by shouting, "OH MAN, OH MAN!"

She always holds her hands like that when she is confused or nervous.

Every echo Lu has had since her surgery looks great, showing mild mitral valve leakage but is not significantly affecting her health at this time. We are now seeing her cardiologist every 6 months.

Enjoying a movie and a cookie during her last echo on 12/14/11

Lu is our pride and joy and is proof that a strong will, a positive attitude, and faith can have a rewarding outcome. I have the same feeling of hope and happiness that I did last year, at this time, and I just know that 2012 is going to be even more incredible than 2011. We have everything we could ever want: a daughter who loves life and has been given the chance to live it.

Not a very happy Wicked Witch of the East

Sailor and Lu before Trick or Treating

Merry Christmas and Happy New Year

Pictures from Lu's first Heart Day celebration: Album

A Big Bunched Up Update + Lu's 1st Birthday!

Let's see. This post is going to include a few months of Lu updates.

First off, me and Matt's first Mother's and Father's Days: On Mother's Day, Lu and Dada woke me up with a nice spa gift certificate which I still haven't found the time to use. I keep thinking I should save it for a time when I really, really, really need it. Who am I kidding? I guess I just enjoy looking forward to it and knowng it is there. We also went to the beach with Gampa, Gamma, Auntie Kristin, Uncle Jim, cousin Sailor, and cousin Owyn. Lu had a blast (of course), and then we had the usual Sunday Dinner at Yaya and Nono's house. For Father's Day we had a relaxing weekend at home (per Dada'a request) and we gave him a massage gift certificate, as well (which he will use as soon as I convince him that it is not at all awkward), and an Orlando City Soccer Club jersey.

On May 23rd, we welcomed a new baby into the family. My sister, Shannon, had her 4th baby girl, Reese Nicole. We haven't met her yet, since my sister's family lives about 8 hours north, but we hope to meet her soon.

For Memorial Day weekend, we took a trip to my Memall's beach house in Alligator Point, FL. It was built by my great-grandfather and generations of West's have been going there since they were kids. It was a great feeling to bring Lu there for the first time. She had such a great time and we really enjoyed spending time with our family and friends. It was a nice break for Matt and I as well. We try to go 2-3 times a year (usually in the summer) but with my pregnancy (I was due right around the time we would normally go and the beach house is at least an hour from any hospital) and with all of Lu's health problems, we hadn't gone since Labor Day 2009. It was a much needed vacation! This is also when Lu took her first real steps. She is a toddler now!

Dada and Lucci at the beach house

Enjoying our first vacation together

In June, we met with Lu's new cardiologist, Dr. Sattar. Unfortunately, Dr. Appleton moved to CA and although this made us really sad, we really liked her new doctor. We had a consultation and a quick check up. We will return in mid October for an echo-cardiogram to check on her mitral valve leakage. There is little to report on Lu, health-wise. She is developing normally, eating great (she loves scrambled eggs and salsa), and is very advanced intellectually. She is walking, talking, and probably the most genuinely happy human being in the entire world.

I love to eat!

Today is Lu's 1st birthday! We had a huge party on Saturday and she was spoiled rotten! She absolutely loved playing with everyone (my little social butterfly) and was in heaven eating her birthday cake!

I can't believe it has been a year since she came into this world. It has been a stressful year but we all made it through with grace. Although I still tear up when I think about everything we went through, especially Lu, the only thing I would have taken away, if I could, was her pain. This past year has made us the family unit we are today and I am grateful for that. This year has sent us on a whole new path, advocating for CHD awareness and helping others dealing with CHD. It has also sent me on a path to a new career. Lu will be almost 4 when I graduate but I hope she understands the part she played in my decision to enter the field of cardiovascular medicine. I hope she understands that lots of good things have developed from all the struggles of her first year and that she has given an important gift to so many people; the gift of perspective. Her smile, bubbly personality, and courage has touched so many lives and helped so many people believe in love, will, strength, hope, and happiness.

Today, we celebrate her first year but we also celebrate the impact one soul can have on the world. She has changed my life and in some ways changed the world in my eyes. She has given me more joy than I could have ever imagined and she deserves to be spoiled rotten today. Cupcakes for breakfast? Whatever she wants! If she could tell me with words, she would probably request some scrambled eggs with salsa. :)

Happy Birthday Lu! <3

Mother Nature & Father Time

No doubt about it; my first year as a mother has been hectic. Maybe that is why I am writing, what was supposed to be, my mother’s day post more than a month late. Time gets away from you, once you become a mother, in more ways than one.

It seems that, to most mothers, time is the enemy. Babies grow so rapidly, especially in their first year, and it makes it seem as though time is constantly and progressively speeding up. It is very common for mothers to find themselves looking at pictures from the first few months of their child's life and longing for the return of their teensy-weensy newborn babies. Even though, in the first few weeks, they desired the day when their babies would sleep through the night or reach a milestone, just the sight of a tiny onesie with a tag that reads "0-3 months" is enough to make a mother of a toddler tear up.

The newborn elation feeling is just so fleeting. It doesn't take long for life and responsibility to steal you from the moments of simple joy and take you to the ones of sanitizing sippy cups and buying Pull-ups. Pretty soon after that, our kids are drinking out of a glass and using the toilet and we will, no doubt, be saddened by the fact that our children need us even less. It is that love/hate relationship mothers have with time. We want to see our babies grow and thrive but, at the same time, we miss our babies that were so instinctively connected to and dependent on us. 

Stupid time.  

The times when our children couldn't yet grab things with their hands, crawl, or eat real food seem so far in the past, even though we experienced those moments fairly recently. One day your little baby is a tony blob of vulnerability and the next, they are running around chasing the family dog and eating their lunch all by themselves, sort of. That idea of, if the first year goes by this fast, then, in no time they will be parents themselves, creeps into your head and urges you to start a college savings plan. I figured that thought would make me cringe but after facing the brief possibility that my baby might not live past infancy, I welcome the future with open arms. 

Bring it on, time. 

When you are a mother, time is also something you are chasing. Once you add Mother to your list of titles, a ton of other roles come along and time is something you don't even notice as it speeds past and leaves you unrested and without a shower. If it were up to me, I would spend all of my time playing and napping with my daughter, but being a mother requires a lot more than reading books and playing peek-a-boo. Being a mom means working every second to ensure that your child has a safe and nurturing environment and a comfortable and enriching future. It also means giving them a past that they can look back on with contentment.

The title of Mother is a limitless role. You are responsible for a life and you are primarily accountable for the adult that they will someday become. To me, that fact means great responsibility, that I take very seriously, and an experience that brings unparalleled joy. Unfortunately, all these duties leave very little time for yourself but that is a sacrifice most mothers are honored to make, myself included.  

After Lu arrived, I knew my role in this world would change but I could have never foreseen the adventure our first year as mother and daughter would take us on and the personal path that she would influence me to travel. Being Lu's mother has made me a student of cardiovascular technology, an advocate for the CHD community, a lover of everything heart shaped, a Pingu viewer, a singer, a boo-boo kisser, a coupon clipper, an expert in cuddling... the list goes on and on and it grows every day. 

On one hand, I miss the days when we just laid around eating, sleeping, and gazing into each other’s eyes. On the other hand, I can't wait to see what titles Lu gives me in the future. Soccer mom? Math tutor?  Grandma? 

Time isn't so bad. 

Our First Mother's Day

Easter 2011

I remember, when I was pregnant, hearing people say that motherhood is nothing like you picture it when you are pregnant. Now, people always tell me how children grow up so fast. In my almost 10 months as a mother, I can say that I can find truth in both of those statements.

It hardly seems like a year since last Easter, when I was about 7 months pregnant with Lu. I remember trying to picture what her first Easter would be like. Since we didn't know the sex of our baby then, I had two pictures in my head: one of my husband and I laughing as we watched our little, dark haired, son crawling around trying to destroy everything in sight and the other of a little girl, also with dark hair, wearing a pastel yellow dress playing with a stuffed bunny. As it turned out, Lu's first Easter was a combination of both visions with some unexpected happenings as well.

Easter 2010

My family gathered at my husband's parent's house, as we do for every holiday, and we did all the traditional Easter activities. Interestingly enough, my husband and I smiled as we watched our bald little girl crawling around, in a floral dress, trying to destroy everything in sight. She did play with a stuffed bunny, at least... right before she chewed on its face. She walked around the yard, with the help of her two cousins, and searched for little white Easter eggs with red hearts on them, tore through her 3 Easter baskets, and ate a huge tray full of food. She had a blast and enjoyed playing all day.

Earlier that week, we got photos of her with the Easter Bunny. In true Lu fashion, she sat on his white furry lap with confidence, and tried to grab his nose. Nothing phases that kid.

Time certainly does fly. When Lu was a few months old, I couldn't even imagine her crawling and talking. Now I can barely remember what is was like to be able to hold her on my chest, while she slept, without her fighting me. She is so feisty and strong now, which is also something I couldn't picture when she was younger. During the months leading up to her surgery, she always seemed so fragile and vulnerable. I couldn't wait for the days when she was healthy and independent like she is now. I am so proud of her strength and grateful for her health and I love to see her growing into an independent little girl. Knowing all the struggles we had when she was an infant doesn't prevent me from missing my little baby but I definitely prefer chasing her around the house over forcing medicine down her throat every 2-3 hours and measuring everything she ate. We are living everything we wished for, right now. It is truly a dream come true.

I may not have pictured having a baby with a serious heart condition, but I am glad for every moment of everything in her 10 months of life, so far. Our experience has made us who we are today and will continue to shape us in the future. Everything Lu went through in her first 6 months of life definitely contributed to the admirable character she is today. I never thought I could admire someone so young but half the reason I look up to her so much is because she is so young. She has confidence, a love for life, and a curiosity so innocent and genuine. She is not even close to the child I imagined when I was pregnant. She is way more, mended heart and all.

February/March Update

It has been over a month since I have blogged so this post is full of updates. February was a busy month for us.

CHD Awareness Week went great and the CHD community did a great job getting information out there, especially on the social networking sites. I spoke with a lot of parents about their experiences having a child with a CHD which was very comforting for me. I want to thank everyone who helped spread the information and supported the cause.

A few weeks ago, my cousin and her husband came down from Pennsylvania and my sister and three nieces visited from Pensacola. We all went to the beach to watch the last launch of the shuttle Discovery. It was Lu's first trip to the beach and she absolutely loved it. I was curious to see what her reaction would be since a lot of babies get scared or overwhelmed but the minute we got out of the car, she started to kick her feet and she smiled and screamed with excitement. As soon as I sat her by the water, she started to crawl in circles and dig in the sand. We had a great time and it was fun to get to watch Lu with all of her cousins.

Lu's First Trip to the Beach

Lu and her cousin, Sailor

Lu and her cousins, Sailor, Charlotte, Grace, and Kaylynn

While my sister and nieces were visiting, we got some professional portraits taken with the whole family. You can't see it in the photo but my older sister, Shannon, is pregnant with her 4th daughter (although I think it is going to be a surprise boy). She is due in May and kept it a secret until her visit. Even though she was obviously showing, it took my sister and I about 2 hours to notice. We just thought she was getting fat or wearing an unflattering shirt and didn't want to hurt her feelings by asking her. ;)

The Whole Family

All The Girls

Sweet Little Lu

On the February 26th, Little Lu's Crew drove down to Coconut Creek for the It's My Heart- South FL Chapter 1st Annual CHD Fun Walk/Run. It was a blast and very emotional for me. It was an honor to be able to participate and I am grateful for everyone who participated or donated. All of the CHD Angels were in my thoughts, especially during the survivors lap. <3

Lu with all the CHD Survivors

Little Lu's Crew

Since Lu's surgery, we have gotten to settle into a more normal routine. It is nice not having to worry about her as much as I used to. A few months before I got pregnant with Lu, my husband was laid off from his job so we had to move into my parent's house. Just as we started to get back on our feet again, Lu was diagnosed with her CHD and I decided to stay home to care for her. Since I am a nanny, my original plan was to bring Lu with me to work, on most days, but with the special care she required before her surgery and the fact that she couldn't be around other kids often, I was only able to return to work last month. With the extra income, we were able to move out of my parent's house, last week, and start a "normal" life. It is also good for my parents because my dad was recently diagnosed with colon cancer and, this way, they can have space and a more peaceful environment to care for him in.

Last week, Lu turned 8 months old. She is crawling (scooting and rolling mostly) everywhere and standing up while holding onto to something. She waves, claps, and tries to talk and sing a lot. We went to Lu's cardiologist last week for a follow-up echo and everything looked good (her mitral valve leakage is still mild to moderate and he doesn't expect that to change) so he took her off her last heart med (Lasix) and said we can try to take her off the Zantac (for her acid reflux) in about 2 weeks. That means she will be med free for the first time since she was 2 weeks old and I am so grateful!

Lu and Dada

My Big Girl

Lu's Journey

CHD Awareness Week

Today starts the first day of Congenital Heart Defect Awareness Week. I have added a few tabs at the top of this blog, including an "about Lu" tab, and others, to honor our CHD warriors.

Most people are unaware that Congenital Heart Defects (CHDs) are the most common birth defect in America, affecting approximately one in one hundred, or 40,000 newborns each year. CHDs are responsible for one third of all birth defect-related deaths and sadly 20 percent of children who make it through birth will not survive past their first birthday. Although a child is born every 15 minutes with a CHD, research continues to be ...grossly under-funded in America. Of every dollar the government spends on medical funding, only a fraction of a penny is directed toward congenital heart defect research. (http://childrensheartfoundation.org/)

7 months ago, I did not know that or any of the other surprising facts about CHDs. As a parent of a child born with a congenital heart defect, it is my responsibility to raise awareness about this very serious and common birth defect, in the hopes that it might save a child's life.

My daughter, Lu, was very lucky that she was able to have a successful heart surgery to repair her defects, but not all families are as lucky as ours. This year approximately 4,000 babies will not live to see their first birthday because of Congenital Heart Defects. Part of the reason for this is that most of the defects are not detected in utero or at birth. Some babies are diagnosed in time for treatment and, sadly, some are not.

There is much research to be done and it all starts with awareness. 

If you are part of the Facebook community, please see our CHD Awareness Week Event HERE and post our logo as your Facebook profile picture, in order to inform people and to honor all of our CHD survivors and angels!

Media Coverage of Lu's Journey and CHD Awareness Week/Month

As parents of a child with a Congenital Heart Defect, Matt and I have always felt that it was our responsibility to help raise awareness in order to inform people, especially new parents, about this common disorder. If more people know about CHDs, hopefully, less tragedies will occur and more funding for research will be possible.

Last week I spoke about Lu's story with Susan Jenks, from our local newspaper, Florida Today, and it was published in today's paper. There is also a short video interview on Florida Today's website. You can see the entire story online HERE and the video HERE.

Front Page

Life and Health section front page

Life and Health inside

We are also trying to raise awareness by promoting Congential Awareness Week/Month. The month of February is CHD Awareness Month and Feb. 7th through the 14th is CHD Awareness Week. I am holding a Facebook "event" with the goal of spreading vital information about CHDs.

During CHD Awareness Week, I will posting facts, videos, photos, stories, etc. on my Facebook wall, in hopes that people will follow my posts and share them on their walls, and ask their friends to share as well. It would make a huge difference in the amount of people who are aware of CHDs and could help several children in the future if everyone could get involved. Please share this event, invite your friends, and encourage them to do the same.

Matt is also designing a logo that we will ask people to post as their Facebook profile picture for that week.

Here is the link to event: 
CHD Awareness Facebook Event


In other news, Lu is doing awesome. She turns 7 months old on Feb. 6th and weighs about 15 lbs. She is eating so well and LOVES spoon feeding. She is sitting up extremely well on her own and is rolling around all over the place. She also stands while supporting herself on a table, or our dog, Sierra. She loves to read and beat on her drum while "singing" and laughing. She also loves the bath, which she has been having in the kitchen sink lately. 

Lu is now discovering the joys of mealtime!

Reading with "Dada"

Scrub a dub dub!

Enjoying the nice Florida "winter" weather

The Start of Something New

It's been a while since my last post. Everything has been so busy and time has gotten away from me. Monday will mark 2 weeks since Lu's surgery and everything has been going great. We were discharged from the hospital on the Friday morning following my last post. It was so exciting. Around 8am, the nurse came in and started the discharge process, which surprised me because I figured it would be later in the day for some reason. They did another echo to make sure everything was fine after they removed the pacing wires, the day before, and then we started getting ready to leave. When the doctors did their rounds, they went on and on about how Lu was the ideal patient. She had recovered so quickly and with such grace.

By 10am, we were on our way out of the hospital with our healthy baby girl. I knew, in my heart, that after I walked out of those doors, everything I had been hoping and dreaming of for Lu, and for our family, would finally be happening, in the days to come. We went from giving her 4 different medications, several times a day, to only two different meds, twice a day, with lower doses. She is on Lasix for fluid retention and Zantac for reflux but can be taken off of them in a few months. I edited all of my alarms, on my phone, that reminded me to give Lu her meds and smiled as I deleted the 6am and 10pm doses. I couldn't wait to start having a normal routine with an earlier bedtime and having less medications made that much easier. I also looked forward to feeding her, watching her enjoy eating, and watching her gain weight. For 6 months, I had been worrying about her health, checking on her often while she slept, weighing her nonstop, and bringing her to the doctor twice a week and now I could just enjoy her and let her be a kid without worrying about every little thing she did. Needless to say, I was ecstatic!

Since we have been home, Lu has been a normal baby. We are amazed by how much she is eating. She has been gaining about an ounce a day and has been eating almost twice as much as she did before the surgery. She is also adjusting well to her new routine. She has a bedtime of 8 or 9pm and sleeps for about 12 hours, waking only twice to eat during the night. Next week we are going to move her from her pack n' play, next to our bed, to her crib in her own room. She is pretty easy going so we expect that it won't be too much trouble.

We saw her cardiologist, Dr. Appleton, in Orlando, last Wednesday. She got another echo and it showed some "mild to moderate" mitral valve leakage. He said that this is a common thing with these types of heart repairs and could improve over time. He also said that it shouldn't cause any problems in the future if it doesn't get worse. If it does get worse, it can be treated with medications and/or a possible surgical correction in 5, 10, or even 20 years down the line but it is still early in her recovery so we are hoping it will be okay. She still has no physical restrictions, which we are very excited about. She sees Dr. Appleton again in 2 months and can be taken off of her Lasix and, possibly, the Zantac as well since reflux usually goes away after the congestion from heart failure resides. After that she probably only need to see a cardiologist every few years.

Now we are just adjusting to our new routine and our hungry little girl but most of all we are enjoying Lu and her true personality, without the stress. :)

No more wires!

Time to go home!

Home and happy to be reunited with my cousin Sailor!

Piggy!

I love food!

Adventure Time- Tuesday Afternoon to Thursday Night

Tuesday (Post-op, Day 1):

They let us feed Lu a bottle on Tuesday afternoon. Before surgery, she had a hard time eating. She would normally eat about 1-2 oz. at a time so we had a lot of difficulty getting her to gain weight. Not only did she have reflux but eating with a hole in your heart is painful and exhausting. Only 1 day after her surgery, she ate 2 ounces of Pedialyte around 1pm, 2 oz. of formula around 2pm, and 4 ounces of formula around 6pm. This was amazing for everyone to see since she had never eaten that much and she had a serious operation the day before. She continued to eat well for the rest of the night.

I also got to hold her. I was so surprised and excited when they said I could do that. Lu didn't seem to mind it either. She went right to sleep and was still and quiet for the first time since her operation. It was a truely amazing feeling.

It looks like I am holding her but she is really holding me.

Lu got to hold Yaya too.

 She was still pretty groggy from the morphine that she was getting every few hours but as they started weening her off the pain meds, she started getting a little playful but you could tell she was very out of it. They would take her on and off the oxygen, depending how her O2 saturation levels. They took the her arterial line, in her wrist, out and removed the Cerebral Oximetry Monitor patch off her head so she looked a less "hooked up." They also removed her restraints. 

That night, Matt's parents went to the hotel and Matt went to the Ronald Mcdonald House while I stayed with Lu. She did pretty good during the night. She tossed around and whined a little bit and got up to eat a few times but was pretty calm. Overall, Lu's progress was pleasantly surprising. I went to bed pretty late and didn't sleep much, not from worry, but from excitement to see what kind of progress the next day would hold.

Wednesday (Post-op, Day 2):

At 5am, Lu got a chest x-ray, which really upset her. She had become very weary of anyone unfamiliar, especially if they came near her and touched her. I guess having so many people causing her physical pain was confusing. She is just too young to understand that they are helping her to get healthy. The look she would give me, when she was scared, made me want to cry. It was like she was trying to get me to help her, even if they were just checking things without hurting her. I know most mothers would take their child's place in those situations, if given the chance. I was always the kind of mom that recognized that a child needed to learn how to cope but at those moments, I would have taken her pain times infinity for the rest of my life, if she could have had just one minute without pain.

A few people from physical therapy and occupational therapy came to play with her and move her around. One of the goals for that was to make her comfortable and ease her anxiety about strangers and after a little while, she seemed to ease up and be more welcoming to people. The fact that she was being poked and prodded less and less, over time, had something to do with that too.

Wednesday was a good day. Lu was starting to look less swollen and would stay awake for longer periods of time without seeming uncomfortable. She was getting pain meds less often and eventually they switched her to Tylenol. She played a little bit and watched Handy Manny on TV but she was still a little uncomfortable at some times and was not very vocal or smiley. Her throat was a little sore from the having the breathing tube on Monday so that, and the pain meds, might have been the cause for her silence.

They removed the chest tube and the CVL (the line in her central vessel in her neck). This was great because not only was the chest tube pretty big and uncomftable, but it was draining into a clear tube and emptied into a large measuring device at the end of the bed. The CVL was also very large. It was held in her neck with stitches and about 3 or 4 IVs were hoked into it. It was very hard to move her and got tangled up a lot with the other wires on her body. They took another chest x-ray after they removed the tube to see if any air got sucked in through the chest tube wound during the removal. The results of the x-ray looked good. This was relieving because if there had been air, they would have had to re-tube her. The wound was bandaged and she seemed much more comfortable after that. It was also easier to hold her without all the extra stuff. 

Bye Bye Chest Tube

They took her off a few meds and all IV fluids so she began taking her meds orally. After that, she had nothing going through her IV ports. Two IV ports remained, one in her hand and one in her foot, so that they could collect blood and administer something through the IV if needed. Everyone, including Lu, was very happy. After every removal of a piece of equipment, her body got a little less cluttered and our hopes for her speedy recovery increased. This also allowed us to give her a sponge bath, which she did not like. It is way to cold in a hospital for a sponge bath but she got all cleaned up and dressed in some pretty PJs which made her happier in the long run. 

Paging Doctor Lu

That night, Matt's parents went back to Melbourne and it was my turn to sleep at the Ronald Mcdonald house. I wanted to stay but I needed some sleep and I knew she was in good hands with Daddy taking care of her.


Thursday (Post-op, Day 3):

In the morning, I had a nice walk to the hospital. It was very wet and cloudy out but the air felt good. I had been having severe headaches, back pain, and an earache so I figured I needed some exercise and fresh air. 

When I walked in, Matt was standing at Lu's bedside while she played and watched TV in her bouncy seat. I greeted Lu and she gave me a huge smile. I didn't know then, but her smile was just the beginning to a great day. As I scrubbed in, Matt told me that she had just eaten a bottle and a jar of sweet potatoes. He also told me that they removed her IV in her foot and she was scheduled for an echo. If the results were good, she could be discharged the next day. It was great news to hear and suddenly my aches and pains went away. 


She played and smiled and talked all day. She was, pretty much, back to the normal, happy, and spirited Little Lu. As the hours passed, and her stats remained good, the positivity in the room peaked. We had a new, more normal, feeding and sleeping routine and Lu was happy to be around Matt and I all day. We hung out and read, watched TV, talked, and played. It was a day we were not expecting for at least a week. Lu's strength amazes everyone each day and her character seems to put everything into perspective. 

I can sit up by myself!

My favorite toy, Mrs. Crabby McCrabberson III

After the echo, they removed her pacing wires. They also ordered another limited echo for Friday morning. We will get the official results by mid morning but the nurse read the first echo report to us and it said something about regurgitation and enlargement of some sort. We are not sure about what this means so we are not sure if it is normal or not. 

Right now, it's about midnight and Lu is sound asleep. Her heart rate is a little low, but not bad, and everything else looks good. The decrease could just be because she is in a deep sleep but I are going to bring it up to the doctors tomorrow.


I've got about an hour before I have to wake her up to feed her. Funny how something that was difficult before is something I know look forward to. It is something new to me, that she actually likes to eat, and I will never take that for granted.

Don't Worry, Be Happy :)