I originally wrote this blog post as private just to get it off my chest with no intentions of posting it for everyone to see. I want to say that I don't want to upset anyone or make anyone feel sorry for me or anything of the sort. I just needed to vent and so I started typing. AND.. I didn't proof read so excuse any mistakes.
Two nights ago it all hit me like a ton of bricks. We have less than a month to try to prepare ourselves to hand our daughter over for open heart surgery. This thought alone makes me sick to my stomach and so incredibly sad. The weird thing is that I truly believe she is going to be okay so it isn't so much the fear of something going wrong (although, don't get me wrong, that thought crosses my mind more than I would like to admit).. the part that is really getting to me this time is that she is older and is going to know and will be scared. I am afraid she is going to be mad at us for "letting" them hurt her and I can't even begin to make myself think about the after effects and the pain she is going to be in. As a mother, you never want to see your child suffer and I cringe when I think about all of the every day normal things that are going to cause her pain when she does them after surgery. Another part that makes me sick is that so many thoughts flood my mind that I wish I could just shake my head and make them go away. When we first found out about Caroline I went through a time when I just kept saying its not fair. Well, I am usually not that person anymore who says that its just not fair that this is happening to us but I find myself late at night with these types of thoughts slowly returning. I am left with screaming thoughts running through my head like "THIS SUCKS", "Its not fair that my 2 year old has to go through this", "What did we do to deserve this?" and "Why us?". *sigh* You have no idea how hard it is for me to say that out loud or to type it for someone to read. I am embarrased almost by those thoughts because I have been over and over and over them for years now. I know that there are a lot of things in this world that are unfair and that "suck" but you have to live life and not feel sorry for yourself. I also know that there was nothing that we did to make Caroline's heart sick.. I know this. And, I also know that no one... NO ONE.. deserves this. So, here it is.... this is what comes back to haunt you as you prepare for surgery. And, as far as I can tell.. there is nothing you can do to stop these thoughts. I assume it is natural for me to feel this way at times. I know that we are going to be okay and we can do this because we have done it twice before. It has just been so long since the last time we've dealt with it that I guess I forgot how hard it is. Please continue to pray for Caroline and for the surgeon that is going to be working on her. Dr. Gaynor is the best of the best in my opinion and there is no one else I would rather be doing this surgery. Oh, I guess I forgot to include any information about surgery... Caroline's surgery is scheduled for Friday, March 18th. We will have to be there for a pre-surgery apt on the 17th and so we will probably fly up on the 15th or 16th. I will post more information when I get a more concrete date of us leaving and when I find out what case we will be on the 18th. <3 <3 <3 <3 <3 <3 <3 <3
Family Picture
Christmas 2009
Tuesday, February 22, 2011
Monday, January 31, 2011
#1 most difficult job : mom
There is nothing in life harder than seeing your child struggle and nothing more rewarding than seeing them succeed. I posted pictures and videos today on Facebook of Caroline walking on her walker at physical therapy. Its moments like that that are a little bit of both. It is so hard to see her struggle to do things that come so easy to most children. It is also so rewarding to watch her and see how far she has come. She is truly our miracle and she surprises us everyday. I am having an emotional week because of her heart cath being this week. I know a lot of you are thinking that with all she has been through that a cath is "no big deal". Caths to me are a very big deal and still very scary because she is still being put under. I have a dear friend that lost her precious child during a cath on the day that Caroline was born. I know that Caroline has done well with them before and I believe that she will be okay, I just wanted to explain why it is that I get so worked up about a cath. One of my worries about the cath is that she will be scared. She hasn’t had a cath done since she has been old enough to know what is going on and it just tears me up inside to think about her being scared. As a mother I know that many of you can sympathize with this. We are not talking about being scared of the dark or a big dog or something like that but a deep fear of people in white coats that Caroline has had for a while now. I pray every night that when she is older that she will not remember any of this. I remember every second of every IV and every cut and every little thing that has caused her pain but my prayer is that she will remember nothing of it. I don't want this post to come across as me complaining about anything or that I am not grateful for everything we have been blessed with. I just needed to vent a little and express my fears and heartache.
I will leave you with a picture from this weekend. We took Caroline to the Natural Science Museum and she had a great time! I took this picture and told her to show me her heart (I have been trying to teach her how to make a heart with her hands) and this is what I got!
OH! And one more picture. Amy Norris with Brownie-Goose made Caroline her very own handmade baby doll named Clementine. Amy did such a wonderful job with the doll and Caroline loves it! Amy even added a heart to her chest so that Caroline would know just how special her little heart is. This doll melts my heart and I am so grateful for a friend who wanted to make Caroline something to take with her to Philly for surgery. I know Clemmie will be sitting right beside her when she comes back from surgery!
Tuesday, January 4, 2011
The New Year and T-shirt sales
2010 was such a good year for us that I almost hate to see it go. Caroline did not have to be hopitalized even once during 2010!! We are so blessed. 2011 will be much different for us because we will have the reminder of what it's like to live at the Ronald McDonald House and hospital during Caroline's surgery :( . It really all scares the crud out of me but to be honest I try and keep it as far from my mind as possible. We put on our strong faces and act like we know how to do this but on the inside things are different. Please keep all of our family in your thoughts and prayers in the coming months as we prepare ourselves for what's to come. I know God will protect Caroline and that she is so tough but I am worried about how tough I am. I think one of the things that scares me the most is that I am afraid Caroline will lose a part of herself. If you know Caroline, then you know that she is the happiest most care free child and has the best sense of humor. After the last surgery it took a while before she smiled again and I feel that after this one it will be even longer. I fear that she will be mad at us for letting them "hurt" her. I know this is just my mommy brain working overtime and that this will pass and one day just be another chapter in our lives but these are the thoughts that flood my brain when I think of what is to come.
On another note, You guys rock my socks!!! So far we have sold 250 t-shirts and are still adding to the list every few hours it seems like. For those of you who haven't seen the information on the tshirts I will copy and paste my last blog post into this one for you to read. In addition to the last blog post we have the ability to get toddler shirt sizes 2T and 4T and the YXS is a size 4/5 and the largest size we have is an Adult 5X. Thank you all so much who have ordered. Caroline is the light of our lives and she keeps us going on most days! You will never know how much we appreciate everyones help and support. I am at times overwhelmed with the willingness of people who don’t even know us to help! We are truly so very blessed!
The shirts are short sleeve white shirts with the small image on the front left chest and the large image on the back.
t-shirt post from a few weeks ago:
Many of you know Caroline's story and have been praying for her throughout her life. For those of you that do not know I am going to copy and paste my original blog post at the bottom of this so that you can all read about my precious angel. Caroline has had two open heart surgeries in her short time here (2 1/2 years) and has one to go. We are planning to be traveling to Philadelphia, Pennsylvania at the end of February or first part of March for Caroline's surgery. During this time Adam and I both will be out of work. We are selling t-shirts in order to raise money to help us during this time to pay our bills back home and also eat and pay for our stay at the Ronald McDonald House. The t-shirts are $15 and as of now we have adult and youth sizes. I am checking into getting toddler shirts done and hopefully I will have this information soon! The design of the tshirt makes me smile and really screams "Caroline" to me. She is our superhero. On the back of the tshirt it will say "Not all superheros fight their battles on the outside" under this it will have a little girl superhero with the outline of a broken heart on her chest. On the front left pocket area of the tshirt (these will NOT be pocketed shirts this time) it will say at the top "Half a heart.... twice the fight" and under that will have a broken heart. Underneath the heart it will say Caroline Puckett, HLHS. I told the lady who is making the design that I wanted them to be able to be worn by men and women so it should be done in colors that will be fine for both. I have been so overwhelmed with the outpouring of love and generosity we have received so far. You guys have been wonderful!! I posted tshirt sales on my Facebook page on Friday late afternoon and just since then have received 75 t-shirt orders! That is so awesome and I hope you all know how much you mean to me. Thank you so much for supporting us during this difficult time in our lives. Caroline is going to kick this surgeries butt and we will hopefully be back home in no time at all! I should have a picture of the shirt design on Tuesday or Wednesday and at that time I will post it here and on my facebook page. If you would like a tshirt you can comment here, you can email me at kpuckett@pruet.com or you can find me on facebook (Katie Puckett). Probably facebook or email will be the easiest so that I can give you my address to mail a check to (I am unsure about posting my address on this site??). Again, thank you so much for your support!
AND this is Caroline's Story....
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 be traveling back to Philadelphia in the spring 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!
On another note, You guys rock my socks!!! So far we have sold 250 t-shirts and are still adding to the list every few hours it seems like. For those of you who haven't seen the information on the tshirts I will copy and paste my last blog post into this one for you to read. In addition to the last blog post we have the ability to get toddler shirt sizes 2T and 4T and the YXS is a size 4/5 and the largest size we have is an Adult 5X. Thank you all so much who have ordered. Caroline is the light of our lives and she keeps us going on most days! You will never know how much we appreciate everyones help and support. I am at times overwhelmed with the willingness of people who don’t even know us to help! We are truly so very blessed!
t-shirt post from a few weeks ago:
Many of you know Caroline's story and have been praying for her throughout her life. For those of you that do not know I am going to copy and paste my original blog post at the bottom of this so that you can all read about my precious angel. Caroline has had two open heart surgeries in her short time here (2 1/2 years) and has one to go. We are planning to be traveling to Philadelphia, Pennsylvania at the end of February or first part of March for Caroline's surgery. During this time Adam and I both will be out of work. We are selling t-shirts in order to raise money to help us during this time to pay our bills back home and also eat and pay for our stay at the Ronald McDonald House. The t-shirts are $15 and as of now we have adult and youth sizes. I am checking into getting toddler shirts done and hopefully I will have this information soon! The design of the tshirt makes me smile and really screams "Caroline" to me. She is our superhero. On the back of the tshirt it will say "Not all superheros fight their battles on the outside" under this it will have a little girl superhero with the outline of a broken heart on her chest. On the front left pocket area of the tshirt (these will NOT be pocketed shirts this time) it will say at the top "Half a heart.... twice the fight" and under that will have a broken heart. Underneath the heart it will say Caroline Puckett, HLHS. I told the lady who is making the design that I wanted them to be able to be worn by men and women so it should be done in colors that will be fine for both. I have been so overwhelmed with the outpouring of love and generosity we have received so far. You guys have been wonderful!! I posted tshirt sales on my Facebook page on Friday late afternoon and just since then have received 75 t-shirt orders! That is so awesome and I hope you all know how much you mean to me. Thank you so much for supporting us during this difficult time in our lives. Caroline is going to kick this surgeries butt and we will hopefully be back home in no time at all! I should have a picture of the shirt design on Tuesday or Wednesday and at that time I will post it here and on my facebook page. If you would like a tshirt you can comment here, you can email me at kpuckett@pruet.com or you can find me on facebook (Katie Puckett). Probably facebook or email will be the easiest so that I can give you my address to mail a check to (I am unsure about posting my address on this site??). Again, thank you so much for your support!
AND this is Caroline's Story....
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 be traveling back to Philadelphia in the spring 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!
Subscribe to:
Posts (Atom)