Family Picture

Family Picture
Christmas 2009

Wednesday, August 25, 2010

I Miss My Friends and other things going on in my life!

It is hard to explain the bond you form with families at a hospital that are going through the same thing that you are but it is a very strong bond that you count on day to day.  Last night while laying in bed I got kind of down in the dumps about never being able to see my friends anymore.  I miss Philly. There, I said it.... I miss Philly.  I miss the doctors there, I miss the nurses there, and most of all I miss the friends I made there.  Make no mistake, I do not in any way miss being in the hospital with Caroline, but there are days where I think everything would be so much easier and less stressful to my "peace of mind" if we could just be close to CHOP (Children's Hospital of Philadelphia) all the time.  I know that this is just the worried "mommy brain" that takes over and thinks these thoughts, but its there, in the back of mind always.  So, anyways there it is, that's whats been on my mind the last few days. 

Now, something completely off topic..........

I am wondering if my husband is the only one that thinks his wife can move anything and everything?? Furniture?? No problem, Adam says grab the other end you got this! ANYTHING, he thinks no problem, grab the other end you got this. Well, last night we found my limit!  Adam's lovely truck has been a money pit since the day we bought it. The latest ailment for the truck has been the fuel pump. We bought a fuel pump and after working for 4 days, it went bad again. So, here we are on fuel pump #2 and Adam got a friend to help him after work lift the bed of the truck up and back to sit on the tires so he could get to the fuel tank.  The only problem is that he was missing a part and had to come back later. I will give you 3 guesses and the first two don't count on WHO he decided could manage putting the truck bed back on with him last night??? You guessed it! ME!   So here we are about to put the bed of the truck back on the frame and I am freaking out. I asked "Is there any way I could do this wrong and it like fall on my hand and chop off my fingers?" .... to this I got a roll of the eyes and a 'come on lets do this already'!  So, with the part of the truck i was holding onto about chest high, I put my hands palms up under it and attempted to 'scoot' the truck bed back down on the frame.   Needless to say, when the bed came off of the tires it was MUCH heavier than I anticipated and felt like it almost broke my wrists!!  GEEZ!!! I was trying to be tough, but it hurt. So, this is my 'super hero' limit... I can lift furniture, I can help push his broken down truck around the world, and all sorts of other odds and ends things that my hubby decides I am strong enough to do but I CAN NOT lift a truck bed. 

Well, I must get back to work I guess. Its Wednesday (HUMP DAY) the week is halfway over! 
WoO hOo!! I will leave you with a pic that makes me smile! Happy Hump Day everyone!

Thursday, August 19, 2010


I just wanted to tell everyone that your comments on my FB page have been so sweet. I also didn't realize that so many people didn't really know about Caroline.  I guess at first, you tell everyone about your childs health problems when you find out, and after a while you kind of forget who knows and who doesn't know.  You get to a point where you want her to feel like she is no different from anyone else and so you just almost shy away from telling her story.  Anyways, I just wanted to say thanks to everyone for being so sweet and saying such kind things!

  We have been pretty busy lately cleaning out and moving things around our house. Some of you may know that we had our house on the market for 12 months and that has finally come to an end. SoOo... I am now into making my house more liveable, seeing as I will be there for a while!  In this process I have realized that we just have too much stuff and we need to have a garage sale!  For a month now I have been saying okay next weekend we are having a garage sale. Well, the time has come and we are TRULY having a garage sale this weekend. I am pumped up about getting rid of some stuff and hopefully making some money so that I can do home improvements.  I have also learned through this that I MAY have some hoarding tendencies.  I keep everything and I have a really hard time parting with a lot of my things.  It also doesn't help that some of my family is the same way and when I ask them if I should keep this or that I am met with the response "Well, you may need it one day" hahaha. Oh Dear! So, wish me luck because it will probably be many years before I get up the motivation to have another garage sale!

  I dont know about any of you but I am completely and totally OBSESSED with cooking shows. I have comcast and I go back and forth at nights between Food Network, TLC, and Bravo.  They all do the same thing and are basically the same show with different people but I sometimes stay up until well after midnight just to catch the reruns! Well, I have found a NEW cooking show that I adore.  On Fox Wednesday nights Gordon Ramsey is now doing a cooking show called "Master Chef". What I love about it is that these folks are just normal people who cook normal things that we all could relate to! You should check it out if you haven't already, but beware... if you have the same obsession as I do YOU WILL BE SUCKED IN!

   Back to Caroline:  I don't know why but for some reason in my mind I thought that once she crawled she would just take off and start walking almost immediately. Like I said, I really have no idea why I came to that conclusion!  Caroline didn't sit unassisted until after her first birthday and started crawling only a few months before her second birthday. I know that, in her own time, she will walk. Its just so heart breaking to watch her struggle with it though.  She now has a new walker (kind of like an old folks walker) and she HATES the walker!  Well, let me make a correction, she like standing up and leaning on the walker, but she HATES to use the walker for WALKING!  Friday was one of the worst days of physical therapy we have had in a long time. By the end of therapy we had to get a wet rag and wipe her down because she had sweat so much during the whole process. Its days like that, that I just want to run out with my child and kiss on her and love on her and tell her how sorry I am for putting her through that! If I thought for one minute that she couldn't do it in the future I wouldn't be taking her but I know that she will walk. She will walk and then she will run and it will all be a thing of the past... but right now and every Friday its a thing that I hate to make her do because as a mother I hate for my child to be so unhappy. :(  ..... After saying all of that I want to show you some pictures that the physical therapist took 2 Fridays ago (not the "worst" Friday but the one before that).  Caroline had been screaming and crying for EVER it seemed like and the PT got her digital camera and told Caroline she was going to take a picture.... well, low and behold... my little diva came out!  She turned her smile on just as fast as can be and took a beautiful picture standing with her walker. As soon as the camera flashed she pouted her lip and went straight back to bawling her eyes out.  *sigh*  My child is a princess through and through and I love it!  Here are the pics from that day! ENJOY!

Wednesday, August 18, 2010

My Very First Blog Post!!

Hope this works! This is my first attempt to blog and I only kinda sorta know what I am doing. Okay, ACTUALLY I have no idea what I am doing.... but in any event. Here we go!

I really have NO idea where to start? I know that not everyone who reads this actually knows me because they get here from someone elses blog. So, I guess I should start with who I was and who I am now. LOL

I grew up in Pearl as Katie Ard and about 5 years ago I met my husband Adam (Puckett). We have been married for a little over 3 years now and have a beautiful daughter named Caroline.  I don't want this to be a blog only about congenital heart defects but I will tell our "heart" story and from time to time touch on the daily struggles we go through as a family.  So, I guess that is where I will start really.... the thing that came in and turned our lives upside down and inside out... Congenital Heart Deffects (specifically Hypoplastic Left Heart Syndrome).

Emily Caroline Puckett was born on Thursday, July 10, 2008. She was born with a serious heart defect called Hypoplastic Left Heart Syndrome (HLHS). This basically means that the left side of her heart is severely underdeveloped or nonexistent. To correct this, she must undergo a 3-stage surgical process. She had her first surgery (Norwood) on July 15, 2008, at Children's Hospital of Philadelphia (CHOP). After being in Philadelphia for a month, they let us come home. Caroline had many obstacles in those few months at home. After Caroline’s first round of immunizations she had seizures and had to be hospitalized at Blair E. Batson Children’s Hospital in Jackson for one week. In October 2008, Caroline went for a routine cardiology appointment and her oxygen readings were very low. Her cardiologist, Dr. Jennifer Shores, decided to keep Caroline overnight and schedule a heart catherization for the next day. The next morning, Caroline went in for a heart cath and they found that the shunt in her heart was clotted almost completely. The Dr. did not feel comfortable fixing the problem here, and therefore wanted us to go back to CHOP for the procedure.

When Caroline came back from her heart cath they brought her to me and put her in my arms while telling me that we were going to have to go immediately back to CHOP to have this fixed. Everything after that moment was a blur for me, I vaguely remember the nurses came in and took her from me to put her in the ICU setting to keep a better watch on her while we were going home and gathering our things. Within minutes of them taking Caroline from my arms she crashed and they told me to kiss her and tell her I loved her and walk away so that they could do all they could to help my baby. I can’t begin to tell you what that felt like. I was so powerless and my baby was slipping away from me as I watched. Caroline was emergently intubated and kept comfortable until they could arrange for an air jet to come pick us up. We arrived in Philadelphia in the middle of the night and they worked on her for hours to stabilize her for another cath the next morning. She was able to have the catherization and her shunt was stinted so that blood could move freely. The surgeon came to me that day and told me that 10% of these babies die suddenly at home between the first and second stage surgeries because of this very reason. If we had not had a doctors appointment and been in the hospital when this happened, we would not have our little girl today. Caroline’s vocal cords were damaged during the emergency intubation and because of this, we had to thicken her formula to a nectar consistency to prevent aspiration. Shortly after we returned home from Philadelphia Caroline stopped eating by mouth because of the strain it was putting on her heart. We spent another 10 days at Blair Batson trying to work out feeding issues and learning how to deal with an NG tube for feeding that ran up her nose and down her throat. Caroline’s 2nd stage surgery was scheduled for December 5, 2008 and she had a scheduled pre-surgery heart cath planned for December 1st. We were very fortunate to have Sanderson Farms provide us with a flight to PA for our 2nd surgery. They told us that they would arrange for us to be taken if we could leave Nov. 25th. We spent Thanksgiving holidays at the Ronald McDonald House in Philadelphia and took Caroline to the hospital that Friday to be weened off of blood thinners. The heart cath that Caroline had on Dec. 1st showed that her aorta had narrowed and needed to be ballooned and reopened for optimal blood flow. Because of the procedure done during the heart cath, Caroline’s surgery would have to be postponed at least 4 weeks. The doctors did not want us flying back and forth between Philadelphia and Mississippi and decided that it would be best to keep Caroline in the hospital until surgery. Caroline had her 2nd stage (Glenn) surgery on December 22, 2008. After surgery Caroline did really well and was extubated very quickly and taken off a lot of the post-surgery meds. On December 23rd, in the middle of the night, I received a phone call saying that she coded and had to be re-intubated. That day was a very hard day for us because they kept her almost in a paralytic state the entire day and night. Christmas eve was a much better day and she started to slowly come around. By Christmas morning, they extubated Caroline and she was awake and aware enough to “open” her presents that had been provided by the hospital and to take a picture with Santa Claus. The next 2 weeks were spent being taken off medicines and working with physical and occupational therapy to start getting geared towards going home. Caroline never picked back up eating and the doctors at CHOP thought that it would be in her best interest to have a surgical procedure to insert a G-tube into her stomach for feeding. Finally, on January 22, 2009 they let us go home. After spending Thanksgiving, Christmas and New Years in Philadelphia, news of going home was music to our ears. Caroline has been doing very good since January and has been living a VERY happy life. She goes to the cardiologist , now, only once every 3 months. She had to have a heart cath in May to balloon her aorta again and everything went really well. Caroline has one planned surgery left to go, and will probably be traveling back to Philadelphia in the summer of 2011. The surgeries designed to fix the defect that Caroline has are only 20-25 years old. There are 20-25 year olds who are doing fine with only the 3 surgeries, who have had to have more corrective surgeries along the way and/or who have had to have heart transplants. Each case is very different and greatly depends on the individual patient. We hope that in another 20-25 years this won’t be something that we even have to worry about because of new technology. We could not have made it this far without the outpouring of love and support that we have received along the way. It has been a very long and hard journey that is not anywhere close to being over, but we are so very fortunate to have her. We hope to bring more awareness to the growing number of children born with congenital heart defects.  Today, Caroline still does not eat by mouth and sees a speech therapist to work on feeding twice a week.  Caroline also has some physical  set backs and has not yet started walking.  With all of the hospital stays and heart surgeries she has been behind at each physical stage but we know that in no time she will take off walking and all of that will be a thing of the past.  She is a very "normal" little girl who does very "normal" little girl things.  She is sassy and I am sure that some of our stories from here on out will make you laugh because she is definitely a princess and likes to be treated like one!

So, this is it.. my first blog post... kind of an introduction into our lives. I hope to keep this thing up and going so that I can have a place to vent my thoughts.  Thanks for reading!