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 :)

Adventure Time- Sunday Afternoon to Tuesday Morning

We left Melbourne around 3:30pm on Sunday and arrived at The Ronald Mcdonald House in St. Petersburg around 6pm. We checked in and went to dinner with some friends, in the area, around 7. We had a pretty uneventful night, got up around 4:15am, and got to the hospital around 5:15.

Ronald Mcdonald House West

After completing registration, we went up to the PICU for some testing. They started an IV, took some blood and nasal swabs, did a chest xray and EKG. This all took about 2 hours and during that time, Lu did great. She did not like the tests but she slept and played in between. We spoke to the anesthesiologist who had, incidentally, had open heart surgery himself as well.

Registration

Waiting to take tests

She loved eating my visitors tag.

What a fashionable gown. She was pretty happy even though she hadn't eaten anything in a while.

Sleeping during the pre-op EKG

After a lot of waiting, the nurse took her away for surgery. She was sleeping when we handed her off so that made it a little easier. It would have broken my heart to see her scared or sad.

My in-laws are here with us but my mom had to stay in Melbourne since my dad is having some medical procedures this week. It is a lot of help to have their support and my mom is being updated through phone and Facebook.

The wait during surgery was easier than I thought it would be. I slept a little bit, we ate lunch, and hung out in the family waiting room. The nurses updated us every time something significant was happening. The time went by pretty quickly and we all knew she was in great hands.

In Lu's open-heart surgery , the surgeon makes a cut in the chest and a heart-lung machine is used to maintain circulation while he closes the hole. The ASD is closed by sewing a patch of pericardium tissue over the defect.  Eventually, the tissue of the heart heals over the patch, and by 6 months after the surgery, the hole will be completely covered with tissue.

After surgery, which lasted about 3 hours, we talked to the surgeon. He actually had to close up 2 large holes in the atrial septum called the ostium secundum and the ostium primum as well as a small PDA, which they tied off. He explained to us that, although the next few days would be intense, children tend to heal much quicker than adults and she will feel better than ever after she has recovered. Because of her ASD, the blood flow in her heart and to her lungs has been very inefficient for her entire life. The holes have prevented the heart from operating correctly and the non-oxygenated blood has mixed with the oxygenated blood which has made her lungs have to work harder as well. Normally the non-oxygenated, or blue, blood in the heart travels from the right side of the heart, through the lungs, turns to oxygenated, or red, blood then travels to the left side of the heart and throughout the body and back. But with most CHDs the red and blue blood gets mixed together and blood and fluid can collect in the lungs and other organs and back and forth between both sides of the heart, causing several problems, as you can probably imagine (see diagram). This has also caused the right side of her heart to be 2-3 times larger than normal and the left side to be 2-3 times smaller. As you can imagine, this has caused every exertion of energy, from eating and playing, to even breathing, to be like running a marathon. But after her repair, the proportions of the right and left sides of her heart were closer to normal and the blood flow was normal.

She was moved to the Cardiovascular Intensive Care Unit (CVICU) around 2pm and we got to see her shortly after. We were prepared, ahead of time, for what we would see but it was still pretty hard to see her hooked up to so many tubes and machines. They sometimes extubate in the operating room but Lu was not breathing well enough on her own, then, so she had a breathing tube (intubation). She also had a chest tube (to drain fluid and blood from her surgical area) and temporary pacing wires, several IVs, a pulse oximeter (to read how much oxygen is in her blood), a catheter, and a few patches and wires that recorded her vitals and O2 stats. She was very swollen, especially on her face so she kind of looked like a different baby. She looked pretty comfortable and would open her eyes for a few seconds here and there and she would grimace and try to cry, which was hard to see, especially since she couldn't make any noises due to the breathing tube in her throat. After she started to wake up a little more, they attached her arms to the bed with arm restraints to prevent her from pulling at the breathing tube. They slowly lowered the level of oxygen going through the tube until she was breathing well on her own. They removed her breathing tube around 9 or 10pm and replaced it with a nasal cannula.

A few hours after surgery

We all left after 10pm since she was still out from the anesthesia and pain meds. I had a severe headache so we chose to get some sleep so we could be able to care for her better when she was more alert. We got a phone call a little after midnight, which scared me pretty bad. The nurse was just letting us know that Lu was having trouble breathing on her own so they gave her a CPAP mask (which is just a mask that forces air in her nose) and tweaked her pain meds. They also inserted a NG tube (Nasogastric tube- a small tube that is inserted through the nostril into her stomach to remove air. It is also used for tube feedings).

Tuesday (Post-op, Day 1):

We got to the hospital in the morning as they were taking the CPAP off, which upset her a lot. Her numbers were good so they are slowly removing things to see how she tolerates it. They have taken out her catheter and NG tube and removed her brain oxygen monitor (a patch on her forehead). She is still receiving morphine but less often. She seems pretty comfortable and is trying to sleep but you can tell she is hungry and wants to roll over onto her side or stomach.

If she continues to do well, they will let us bottle feed her this afternoon, which should make her very happy. Right now, we are just letting he rest and hanging out. I will try to update the blog tomorrow night.

No more breathing tube or CPAP

Little Lu's Crew

Little Lu's Crew will be walking Feb. 26 in the 1st Annual It's My Heart South Florida Chapter Congenital Heart Defect Awareness Fun Walk/Run! 

Join us in raising money for Congenital Heart Defects (CHD) by joining Lu's team or donating to help us reach our team goal! ♥ 

 Follow this LINK!

A Bump in the Road

We were all set to leave, yesterday, for St. Petersburg (Lu's surgery pre-admission testing was supposed to be this morning at 9am and her surgery was set for tomorrow morning) but after calling the nurse at the surgeon's office yesterday morning, they recommended we change the date since Lu had been sick the previous week.

It was pretty tough news to hear, not just because we were all packed and ready to go, but also because we had been very excited to have a healthy baby home for the holidays and ready to start the new year as a normal family. I have also been concerned about her health because she hasn't gained weight in about a month so I know that is a sign that she needs to have the surgery soon. We know we need to do whatever we can to reduce the risks of anesthesia so we have come to terms with the fact that this is what is best for Lu.

Her new surgery date is set for January 3rd.

Since we will be home for the next few weeks after all, I have put together a Holiday Gift Giving Event to help sick children, who have to spend their holidays in the hospital, have a nice Christmas. I will be accepting new toys and gifts at my house on Tuesday, 12/21 and will be delivering them to the Holmes Regional on the 22nd. I will also be accepting donations for gifts through paypal now through December 21st. You can use my email (JunebugFL82@aol.com) on the paypal site or you can visit Lu's Facebook page: Little Lu Favero and click on the Holiday Gift Giving Donations tab at the top of the page.

Here is a link to the Facebook event: Holiday Gift Giving Event

Thank you and Happy Holidays!

Pulse Oximetry Testing Can Save Lives

From: http://perfectbrokenhearts.wordpress.com/category/chd-research/pulse-ox-testing/

Approximately 36,000 babies are born each year with a CHD.  (American Heart Association Website). Less than 10% of CHD’s are diagnosed before birth.

This year approximately 4,000 babies will not live to see their first birthday because of Congenital Heart Defects. (Children’s Heart Foundation)

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. (Children’s Heart Foundation)

Click this LINK to read more about this simple and non invasive test that can help save the lives of so many babies.

Lu's Firsts

Since my last update, Lu has had a lot of firsts. She celebrated her first Thanksgiving, had her first professional Christmas photo shoot (besides the homemade one with mommy), met Santa Clause, and cut her first tooth! She also caught her first cold but it doesn't seem to be bad at all.

Thanksgiving was a blast. We did the usual huge family dinner at Yaya's house where Lu tried her first banana baby food and had a few small tastes of sweet potato casserole, which she loved! She sat in her excersaucer playing and talking while we all ate and talked about the last Thanksgiving where we announced my pregnancy via wrapped framed ultrasound photo. It was a fantastic day and we can't wait for next year when she can sit at the table, with a healthy heart, and eat all of the yummy food.

The Big Announcement- Thanksgiving 2009

 

Lu's First Professional Photo Shoot

Lu and Sailor Meet Santa

BFFs- Sailor and Lucianna

Lu loved Santa!

Help a sick child have a nice holiday.

With Lu's surgery being set for December 15th, I started thinking about all the children that will have to spend the holidays in the hospital. We are hoping to be home before Christmas but there are many children who will not be able to be home to enjoy the holidays.

There are many things you can do to help those children have a happy holiday. For instance, you can buy new toys and donate them to your local hospital or stuff some stockings with fun toys and games for the kids to enjoy during their stay in the hospital. Craft kits, coloring books, games, and other activity based gifts are the most beneficial since it can be very boring and uncomfortable for a child who has to stay in bed and those sorts of fun projects offer a distraction from any pain they may be in as well. There are also play rooms on many pediatric floors so they are in need of new toys year round.

While Lu was in the NICU at HRMC, they used several homemade items like quilts, knitted blankets, hats, and booties. They also had cute homemade name plates for the isolettes and cribs, made from inexpensive craft store materials (this would be a cute  idea for kids to help with).

Her is a link with information on how to donate gifts to All Children's Hospital:
http://www.allkids.org/body.cfm?id=205

If you would like me to deliver the gifts when we are over there, let me know. We are bringing 3 cars over so there will be plenty of room!

There are also several local hospitals that could use your help:
http://hospitals.local-data.com/county/florida-fl/brevard/849/

Thanks Everyone and Happy Holidays!

Almost There

Today we set the date for Lu's surgery. It will be on December 15th at All Children's Hospital in St. Petersburg. It is about 3 hours from our home so we will probably have to go there on the 13th because Lu has her pre-admission testing on the 14th. Recovery usually takes about a week so hopefully she will be well by Christmas.

While at the cardiologist's, on Wednesday, she was given another echo which revealed Patent Ductus Arteriosus (PDA). This isn't a serious problem and doesn't change her treatment at all. They will, most likely, just close it up during her surgery next month.

In the weeks since my last post, Lu has grown so much. Her weight gain is still slow but she is at almost 12 lbs. now. She has been rolling over all over the place and loves to hang out in her new walker/exerciser. She has been doing a lot better since her stay in FL Hospital and hasn't really vomited much at all. She is her usual smiley, talkative, and giggly self and we enjoy every second of her cute and happy personality.

Today I made an appointment to get her holiday portraits done but then decided to try them on my own (with my iPhone, LOL). They came out great but we still may keep her appointment to see if we can get some more creative shots of her, since she would only sit for my photo session for about 10 minutes.

I will keep the blog updated, especially when she is in St. Petersburg. Thanks again for all of your support and encouragement!

Lu's First Halloween

Lu's First Holiday Photos

What an angel!

Our First "Chilly" Day

She can now, somehow, maneuver herself out of this seat.

This exerciser is her favorite place to play!

My Little Ham