Family Picture

Family Picture
Christmas 2009

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!

6 comments:

  1. Thanks for sharing your story! My daughter also has HLHS. I'm looking forward to getting to know your family better! I think your first blog post was great. :)

    ReplyDelete
  2. Thanks for participating in my blog event. I think it is great that this marks your first blog post. I hope that this will allow you to connect with many new heart families!

    ReplyDelete
  3. Thank you for sharing your story and for inviting us into your life. I started blogging when we got Hope's diagnosis and it really helped me get my feelings out and it also kept my family and friends updated on what was happening. I hope you will continue and I hope you don't mind me adding your blog to my list.

    ReplyDelete
  4. Jenny, I look forward to getting to know you also! Thanks for reading my blog post. I am sure you are very familiar and have been through the exact same things.

    Stefenie, Thank you so much for doing this event so that we could all connect and read each others stories.

    Hope, I agree, it will be a wonderful way to update family and friends on the things going on with Caroline. THanks for stopping by!

    ReplyDelete
  5. Thanks for sharing Emily's story. My son Braeden has HLHS, he will turn 6 this November. We still face the feeding issues, but have finally contacted an intensive feeding clinic with high hopes. I look forward to following your family's blog.

    Stephanie and Braeden(HLHS)
    http://braedensheartjourney.blogspot.com/

    ReplyDelete
  6. Occupational therapy is a health profession whose goal is to help people achieve independence, meaning and satisfaction in all aspects of their lives. Read more for more info.

    ReplyDelete