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!
Family Picture
Christmas 2009
Monday, December 20, 2010
I know I promised...
Time really gets away with me and I dont realize how long its been since I have done one of these, but apparently it has been over 2 months!!! I know, awful awful awful. I just want to tell everyone to have a WONDERFUL Christmas and hug your family extra tight. You never know what the next year brings and you always want to be so grateful for what you have right now. Love you all and my New Years resolution this year will be to write blogs more often!
Wednesday, October 6, 2010
I promise to do better
Oh my goodness, has it really been a month since the last time I posted? Say it ain't so! I told myself I would stay on top of this blog and I have failed miserably. I guess I have not posted anything lately because life has been.. well... normal. I use that term lightly and many of you may laugh that my life is far from your sense of "normal". In the past month we have just been chugging along and taking things in. Caroline has changed more in the last month than at any other time in her life. She has become a completely different child. She has her own personality and little quirks that make me smile just thinking about them. Although she may not walk and she may not eat she is not all that different from anyone elses 2 year old. There are days that go by that I forget anything is wrong.
Today, as I sit here at work, I just want to leave and go hold her and love on her. As of this morning, we have now lost 9 children this past week in our CHD community. Its moments like this that it all comes crashing down. It really hits home and it makes you want to vomit. Why does this happen? Why do these children have to go through so much? Why do some of them lose the fight? Why? Why? Why? I don't have the answers... and I don't think anyone does. I just want more awareness to be brought to this growing problem and more funding for research so that this does not happen. Hold onto your children and squeeze them extra tight. *sigh*
On to more cheerful ramblings.... Christmas time is right around the corner and I am so excited. This will be the first Christmas that I think Caroline will really know a little bit about what is going on. I want to start traditions with her and make her love it as much as I do! What Christmas traditions do you have? Please share some of them and maybe I can "adopt" some of your fun things to do at Christmas with the family!
I really need to put some deeper thought into something I can talk about on my blog. I will try harder to do better than waiting an etire month between blog posts! In the meantime, please pray for the families who have lost their dear children this week. I cannot imagine what they are going through and they need all the lifting up and extra prayers they can get.
I will leave you with a few pics of sassafrass!
Today, as I sit here at work, I just want to leave and go hold her and love on her. As of this morning, we have now lost 9 children this past week in our CHD community. Its moments like this that it all comes crashing down. It really hits home and it makes you want to vomit. Why does this happen? Why do these children have to go through so much? Why do some of them lose the fight? Why? Why? Why? I don't have the answers... and I don't think anyone does. I just want more awareness to be brought to this growing problem and more funding for research so that this does not happen. Hold onto your children and squeeze them extra tight. *sigh*
On to more cheerful ramblings.... Christmas time is right around the corner and I am so excited. This will be the first Christmas that I think Caroline will really know a little bit about what is going on. I want to start traditions with her and make her love it as much as I do! What Christmas traditions do you have? Please share some of them and maybe I can "adopt" some of your fun things to do at Christmas with the family!
I really need to put some deeper thought into something I can talk about on my blog. I will try harder to do better than waiting an etire month between blog posts! In the meantime, please pray for the families who have lost their dear children this week. I cannot imagine what they are going through and they need all the lifting up and extra prayers they can get.
I will leave you with a few pics of sassafrass!
Wednesday, September 8, 2010
Let it be Me
I don't ever know exactly how to start these ramblings of mine other than just to dive on in! I think I need writing help 101. I have several different thoughts running through my head right now so bare with me!
Thought 1:
This isn't a deep thought, this is just something that is now bugging the crap out of me. Caroline has had her ears pierced since she was 6 months old (perfectly pierced by the anesthesiologists at CHOP) and after a year of nothing happening to the little pink earrings in her ears I decided it was time for an upgrade. I traded in an old necklace of mine and got Caroline her very first pair of real tiny diamond earrings. I am sad to say that within 3 months one came out never to be seen again *sigh*. When I noticed it missing I went into freak out "what if it closes up" mode and stuck one of my only slightly bigger diamonds in her ear. You can only guess what happened to it. So, I took out the one remaining tiny diamond of hers and put back in her little pink 1st earrings. A week ago she woke up with only one of those in..YES, her very first pair of earrings that I wanted to hold onto and keep for a baby book we now only have one of *double sigh*. So, as a last effort I dug into my jewelry and came out with a little tiny pair of tanzanite earrings. They looked so cute on her and she did good for ONE week. This morning I got to the babysitter only to realize that she only had ONE earring in AGAIN *scream (because I am way past sighing)*. I don't know what I will do tonight or what I will put in her ears because now she has not only lost every earring she owns but also every earring that I own that she could wear. Okay, I am over it... just needed to vent. I know, shes a baby and these things happen once, maybe twice.. but really??? AGHHHHHHH!
Thought 2 :
I am motivated. Don't ask me where it came from but deep in the night I guess I came up with a lot of motivation. Don't get me wrong, it is not motivation that stretches across my entire life. I am motivated to better my house. I feel like its almost a nesting desire deep within me somewhere. I am itching to make a change. I have furniture I want to move around and rooms I want to dive into with both feet and start redoing. My backyard has been an eyesore since the day we moved in. Adam and I spent countless hours in the backyard at first trying to rake and get somewhere with it all and then life happened and we got dogs and we got married and then I got pregnant and very little has been done in that yard since then! I swear I think that there is at least 10 years of matted pine straw and yuck in that yard and by yuck I mean pine straw, pine cones, the occasional whatever that the dog has torn up, things from a time way before us that seem to surface every once in a while, etc. I think some of my motivation came from finding how much Caroline loves to be outside. This weekend we didn't do much else other than play with and entertain Caroline. We made MANY trips to the backyard to swing and Adam and I took turns raking. I hope that this motivation sticks with me and we may finally one day enjoy our house and backyard. (fingers crossed)
Thought 3:
I have an aching in my bones for the fall. Its not just an end to this hot and humid weather, but some of the things I love start in the fall. I can't wait for football season to be in full swing. I love when you can sit at home and pretty much any channel has an interesting football game on. The smell of a bonfire is something I can't wait to smell this season. I want to catch up with friends I haven't seen in a while. I want to have more gatherings at my house and cook out and sit around something burning. (HAHA) If you know me, then you know I love games. My family gets together VERY often but we don't "play" well together. It never fails that when you get my dad involved in a game (IF you can get him involved in a game) that somehow there are discrepancies in the rules of some sort, my little brother insists on reading the cards (which drives me crazy) when playing games like Trivial Pursuit, and by the end of the game we are all wanting to be as far from each other as possible. So, this being said if any of my family is reading this does not mean I want to play games with YOU. LOL... I do want to keep having you over and maybe one day we can play a game with no fight. I do have friends though that I feel like are "long lost" friends lately and I want everyone to get together because you just never know when doing something "later" may not come.
AND this brings me to my next thought...
Thought 4:
I saw this verse on someones Facebook page the other day and it stood out to me. "The Lord is close to the brokenhearted and saves those who are crushed in spirit" Psalm 34:18. In the past few weeks it seems like there have been many people that I know who have lost someone close to them in life. I mean lost someone as of death or even lost someone because of divorce or other reasons. I think being brokenhearted can come from many things and it really has been heavy on my heart lately. With the fall and cooler weather I tend to sometimes get down in the dumps and more "depressed" at times. You all know that I am not a Debbie Downer and I don't dwell on whats wrong with life. But, it never fails that at the start of this season I go through a transitional period where I think about the sad parts of my life. I think about Caroline and all that she has been through and all that she will have to endure in her life and it finds me very brokenhearted. Its also times like this when I miss my grandmother. She was one of the most wonderful women in the world and I miss her more than words can express. She loved Caroline so much that you could just see it all over her face and it makes me so sad that Caroline will not know or remember her when she is grown. (and here I am crying on my keyboard)..... anyways, it is comforting to know that, as the above verse states "The Lord is close to the brokenhearted...."
When I started this post I had no intentions of adding the 4th thought but it came to me as I typed and I am sorry if it made what was a happy post, sad. I am not usually a sad person and I thank God everyday for the amount of time he gives us with each person in our lives. I will leave you with a few pictures from my sweet Rhino's 12th bday.
And the lyrics to a great song by Ray Lamontagne
Let it be Me
There may come a time, a time in everyones life
where nothin seems to go your way
where nothing seems to turn out right
there may come a time, you just cant seem to find your way
for every door you walk on to, seems like they get slammed in your face
thats when you need someone, someone that you can call.
and when all your faith is gone
feels like you cant go on
let it be me
let it be me
if its a friend that you need
let it be me
let it be me
feels like your always commin on home
pockets full of nothin and you got no cash
no matter where you turn you aint got no place to stand
reach out for something and they slap your hand
now i remember all to well
just how it feels to be all alone
you feel like youd give anything
for just a little place you can call your own
thats when you need someone, someone that you can call
and when all your faith is gone
feels like you cant go on
let it be me
let it be me
if its a friend you need
let it be me
let it be me
Let it be Me
Thought 1:
This isn't a deep thought, this is just something that is now bugging the crap out of me. Caroline has had her ears pierced since she was 6 months old (perfectly pierced by the anesthesiologists at CHOP) and after a year of nothing happening to the little pink earrings in her ears I decided it was time for an upgrade. I traded in an old necklace of mine and got Caroline her very first pair of real tiny diamond earrings. I am sad to say that within 3 months one came out never to be seen again *sigh*. When I noticed it missing I went into freak out "what if it closes up" mode and stuck one of my only slightly bigger diamonds in her ear. You can only guess what happened to it. So, I took out the one remaining tiny diamond of hers and put back in her little pink 1st earrings. A week ago she woke up with only one of those in..YES, her very first pair of earrings that I wanted to hold onto and keep for a baby book we now only have one of *double sigh*. So, as a last effort I dug into my jewelry and came out with a little tiny pair of tanzanite earrings. They looked so cute on her and she did good for ONE week. This morning I got to the babysitter only to realize that she only had ONE earring in AGAIN *scream (because I am way past sighing)*. I don't know what I will do tonight or what I will put in her ears because now she has not only lost every earring she owns but also every earring that I own that she could wear. Okay, I am over it... just needed to vent. I know, shes a baby and these things happen once, maybe twice.. but really??? AGHHHHHHH!
Thought 2 :
I am motivated. Don't ask me where it came from but deep in the night I guess I came up with a lot of motivation. Don't get me wrong, it is not motivation that stretches across my entire life. I am motivated to better my house. I feel like its almost a nesting desire deep within me somewhere. I am itching to make a change. I have furniture I want to move around and rooms I want to dive into with both feet and start redoing. My backyard has been an eyesore since the day we moved in. Adam and I spent countless hours in the backyard at first trying to rake and get somewhere with it all and then life happened and we got dogs and we got married and then I got pregnant and very little has been done in that yard since then! I swear I think that there is at least 10 years of matted pine straw and yuck in that yard and by yuck I mean pine straw, pine cones, the occasional whatever that the dog has torn up, things from a time way before us that seem to surface every once in a while, etc. I think some of my motivation came from finding how much Caroline loves to be outside. This weekend we didn't do much else other than play with and entertain Caroline. We made MANY trips to the backyard to swing and Adam and I took turns raking. I hope that this motivation sticks with me and we may finally one day enjoy our house and backyard. (fingers crossed)
Thought 3:
I have an aching in my bones for the fall. Its not just an end to this hot and humid weather, but some of the things I love start in the fall. I can't wait for football season to be in full swing. I love when you can sit at home and pretty much any channel has an interesting football game on. The smell of a bonfire is something I can't wait to smell this season. I want to catch up with friends I haven't seen in a while. I want to have more gatherings at my house and cook out and sit around something burning. (HAHA) If you know me, then you know I love games. My family gets together VERY often but we don't "play" well together. It never fails that when you get my dad involved in a game (IF you can get him involved in a game) that somehow there are discrepancies in the rules of some sort, my little brother insists on reading the cards (which drives me crazy) when playing games like Trivial Pursuit, and by the end of the game we are all wanting to be as far from each other as possible. So, this being said if any of my family is reading this does not mean I want to play games with YOU. LOL... I do want to keep having you over and maybe one day we can play a game with no fight. I do have friends though that I feel like are "long lost" friends lately and I want everyone to get together because you just never know when doing something "later" may not come.
AND this brings me to my next thought...
Thought 4:
I saw this verse on someones Facebook page the other day and it stood out to me. "The Lord is close to the brokenhearted and saves those who are crushed in spirit" Psalm 34:18. In the past few weeks it seems like there have been many people that I know who have lost someone close to them in life. I mean lost someone as of death or even lost someone because of divorce or other reasons. I think being brokenhearted can come from many things and it really has been heavy on my heart lately. With the fall and cooler weather I tend to sometimes get down in the dumps and more "depressed" at times. You all know that I am not a Debbie Downer and I don't dwell on whats wrong with life. But, it never fails that at the start of this season I go through a transitional period where I think about the sad parts of my life. I think about Caroline and all that she has been through and all that she will have to endure in her life and it finds me very brokenhearted. Its also times like this when I miss my grandmother. She was one of the most wonderful women in the world and I miss her more than words can express. She loved Caroline so much that you could just see it all over her face and it makes me so sad that Caroline will not know or remember her when she is grown. (and here I am crying on my keyboard)..... anyways, it is comforting to know that, as the above verse states "The Lord is close to the brokenhearted...."
When I started this post I had no intentions of adding the 4th thought but it came to me as I typed and I am sorry if it made what was a happy post, sad. I am not usually a sad person and I thank God everyday for the amount of time he gives us with each person in our lives. I will leave you with a few pictures from my sweet Rhino's 12th bday.
And the lyrics to a great song by Ray Lamontagne
Let it be Me
There may come a time, a time in everyones life
where nothin seems to go your way
where nothing seems to turn out right
there may come a time, you just cant seem to find your way
for every door you walk on to, seems like they get slammed in your face
thats when you need someone, someone that you can call.
and when all your faith is gone
feels like you cant go on
let it be me
let it be me
if its a friend that you need
let it be me
let it be me
feels like your always commin on home
pockets full of nothin and you got no cash
no matter where you turn you aint got no place to stand
reach out for something and they slap your hand
now i remember all to well
just how it feels to be all alone
you feel like youd give anything
for just a little place you can call your own
thats when you need someone, someone that you can call
and when all your faith is gone
feels like you cant go on
let it be me
let it be me
if its a friend you need
let it be me
let it be me
Let it be Me
Wednesday, September 1, 2010
Echo's and EKG's and Horses OH MY!
Today Caroline had an 8:00am appointment at the Eli Manning Clinic with her Cardiologist. These are the appointments that I (for lack of better words) "look forward" to the most because they answer the million dollar question. How is Caroline's HEART? I also dread these appointments because by the end of it I am more worn down than my child. When you arrive in the basement of the children's hospital you wait for your name to be called to go sit at a desk for check in. From there, we go around the corner and up the elevator to the Eli Manning Clinic and give our paperwork to the next lady at the desk and are given a "restaurant buzzer".. haha.. that's all I know to call them because its the same thing they give you when you are on the waiting list at a restaurant. It never fails that, as soon as you are sitting down with your child, your buzzer goes off for the first time signaling it is time to go back for height and weight. After height and weight (which WOULD be an easy task if Caroline didn't flip her lid!), you go back out with your buzzer to the waiting room. The next time your buzzer goes off you are ready for your EKG. We got Caroline all undressed and ready for the EKG and as soon as they started putting the stickers on her chest she starting acting like a crazy person! After we got Caroline calmed down for them to finish the EKG we had to get her back dressed and go BACK out to the waiting area. The 3rd time your buzzer goes off you are ready to come back for your echo. We got Caroline undressed AGAIN and laid her down on the hospital bed/stretcher. AGAIN, Caroline went nuts but I was prepared for this (or so I thought). I brought her bubbles to blow while she was having her echo done because she loves bubbles.... or DID until today! After a few minutes of her blood curdling screams I attempted to lay with her and help hold her down since she was "helping" the lady do the echo by grabbing the wand out of her hands every time she got a chance! She pulled my hair and pulled my earrings, she pushed me away and finally she told me too "moozhe", which in Caroline's terms means MOVE! Towards the end of the echo they turn the sound on to listen to the beat and blood flow and at that moment Caroline stopped crying. It sounded kind of like the galloping of horses and so, since she had been infatuated with the pictures of the horses in the clinic all morning, I told my 2 yr old that she had a horse in her heart. The look of amazement and wonder that she gave me is hard to explain but it was all I could do to keep a straight face! She listened so closely for the rest of the echo to the horse in her heart. At the end of it they needed another picture of her Aorta and they needed to get right under her neck to get it. The sound it makes is different and kind of a soft swishing noise, and to Caroline's surprise, THIS is where the baby horse lives! When the echo was finished we dressed Caroline again and were finally put in a room to wait for the doctor. As I said before, our appointment started at 8am.... at 9:45 the doctor walked in because of an emergency in the unit that she had to oversee. It had been a LONG morning and Caroline was completely knocked out asleep! I had the dreaded medicaid discussion with the doctor and she expressed that she didn't believe that it was a valid reason to push the surgery date sooner just to make sure that we beat the timing on Medicaid possibly closing the border and therefore not allowing us to go to Philly for surgery. She did say though that she would contact the surgeon this afternoon and express our concerns and see what he said. Her thoughts are that he will want to wait until spring to do the 3rd stage surgery. At this point, there is nothing we can do other than hope and pray that the borders are not closed off before spring. I know that this does not make sense to a lot of people that we would want to go to Philadelphia, PA for surgery, but that is what we know and that is who knows Caroline's heart the best. I know that we now have a surgeon here that can do it and has been successful since coming here in April, but it means a lot for me to go with my gut feeling and that is to go back to Philly. Please continue to pray with us that in the end everything will work out and she will not be held back from going to PA for surgery. Whew, after the long morning we had at UMC I am worn out and badly need an afternoon nap (yeh right)! Maybe, JUST maybe, Caroline can find it in her horse filled heart to go to sleep early tonight so that I can get some extra ZzZzZ's in! Ta Ta for now! I will leave you with some pictures of Caroline eating a "chocolate sandwich" in other words Nutella on bread! This was a MAJOR breakthrough for her and I hope she eats MANY more chocolate sandwiches in the future!
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
WOW... I FEEL SO LOVED!!
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!
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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!
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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!
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!
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