Thursday, April 29, 2010
Monday, April 26, 2010
Okay so having Twins is a bit of a challenge (or maybe having twins and 5 other kids not sure really), it's time consuming, twice the everything, but Oh MY Goodness it is AMAZING!! I love love love it! I always said No way I could never have 2 babies at once, but I was wrong, I amaze myself sometimes (I just gave myself a compliment WOW that never happens)! I wish I could have done this every time! There is nothing better than 2 sweet little babies smiling at me, or crawling towards me, or snuggling up beside me, or playing peek a boo.. I love it!! My Twins are Amazing so much alike and yet soooo different! While I don't want them to grow up to fast I can't help but wonder what the future holds.
Saturday, April 24, 2010
I happened upon a fascinating article in the Journal of Clinical Nursing. The article was written by Shu-Fan Lan, Pei-Fan Mu, and Kai-Sheng Hsieh. They are MD’s or RN’s that work in the Pediatric Cardiology field. They conducted a study in 2003 and their results of the study was printed in the journal in 2007. The article is titled “Maternal experiences making a decision about heart surgery for their young children with congenital heart disease.” I am not a scientist and am not a researcher for CHD or psychological issues. I am a mother of a daughter with CHD and reading this article did two things for me…it made me say “Wow! I’m not the only one that felt that way,” and “I bet that would help others in the same situation.” So, I’m going to share some of their findings here and include a link to the article. I will probably include this information in two posts over a couple days.
The study basically dealt with nine families who had children with CHD’s confirmed at birth or shortly after. Six of the children (four boys and five girls) were diagnosed with Tetralogy of Fallot. Three were diagnosed with ventricular septal defect and one of the babies with VSD also had transposition of the great arteries and atrial septal defect. The study focused on the mother’s, who were the main caregivers to the CHD child, and the families. It examined how the stress altered day-to-day activity, how stress was reduced when making care decisions for the child, and how the family relationships handled the stress.
The study found five themes dealing with the open-heart surgery itself that preoccupied the day-to-day living of families dealing with CHD. Those five themes were understanding the surgery step by step, role pressure, constructing a caretaking ability, endeavouring to maintain family function when preparing for surgery and deliberate consideration to make a correct decision.
The first theme of understanding the surgery step-by-step contained transitional steps. The first transitional step towards understanding was shock over the diagnosis. This stage is one anyone with a CHD baby has understands well. This article noted that this stage has a wide range of feelings and not everyone has the same feelings. Some of the emotions felt in this stage include:
Another important aspect of this stage is asking why. The stress and fear is greatly increased in parents who can’t get adequate answers as the cause of the CHD. The article stated “on asking, the lack of medical confirmation of the cause of the illness makes them feel regretful and helpless.”
The second transitional stage in the understanding the surgery stage is a dream or hope of the surgery being unnecessary. I have been here. I was sitting in my new pediatric cardiologists office when my baby was three days old, watching other mothers with their CHD babies, thinking, this will all go away. After the tests are done, I will find out it is nothing and we can go home and get on with enjoying this baby. After learning of the diagnosis, a part of me still wanted hope for that “miracle” that some people get. A medical miracle, a miracle from God, an uexplained miracle, good luck, good karma….whatever people called it, I wanted one. This is transitional stage two. Emotions in this stage include:
*fear that surgery will cause the child’s death
*fear over negative after-effects of the surgery
*added frustration over lack of knowledge about CHD and potential therapies
*concern over scarring
One mother of the study commented: “In the beginning, I was struggling. I worried she might have a scar here (pointing her breast) after surgery, especially as she’s a girl. I wished there was no need of surgery. We would just wait to see if medicine could heal her.”
Lastly, the transitional stage of accepting the fact of surgery. This stage comes to every CHD parent. After the mourning, the shock, the disbelief, the hoping against hope, the fear…comes the realization that surgery is the treatment and only way for a possible future. Emotions in this stage include
*a sense of relief that baby is a part of the family
*a sense of gratitude or feeling lucky that their case of CHD was not as serious or fatal as others they come to know
*an understanding that their child’s CHD is serious and the only possibility for a partial or full recover is through surgery
*a sense of relief for a plan and direction of treatment
Caregiver’s Role Pressures
The second theme investigated in the study is the extreme pressures placed on the caregivers of children with CHD. These pressures affect the entire family, but appear more affective for the primary caregiver. This stage includes mood-swings in the caregiver.
These mood swings happened on a day-to-day basis over the care of the child. Realizing the frailties and precarious health condition of the CHD child caused anxiety and stress, resulting in a sense of moodiness. The primary caregiver’s concern over the environment and affected all members of the family. The caregiver generally focused on the CHD daily, worrying over the health and well being of the child. This had a tendency to make the family have a hard time relaxing. Often times this period of role strain created a sense of guilt, especially for mothers. Mother’s often felt guilt over not being able to create a perfect child, giving their child a CHD, and guilt over the perceived neglect of other children in the family. Apparently, and this made me feel normal, mothers carry guilt over the scar that will be left upon their child’s perfect body. Caregiver’s also carry guilt over a feeling of responsibility. One mother explained: “I felt responsible so I almost didn’t sleep. During the time I looked after him, I lost 20 kilograms in 3 months.”
While the emotions of having a child with a CHD are turbulent, understanding those emotions and accepting that those emotions are normal can help. Part II of this study will be coming soon. The citation to the article is:
Shu-Fan, Lan, Mu Pei-Fan, and Hsieh Kai-Sheng. “Maternal experiences making a decision about heart surgery for their young children with congenital heart disease.” Journal of Clinical Nursing 16.12 (2007): 2323-2330. Academic Search Premier. EBSCO. Web. 26 Feb. 2010.
Add comment February 27, 2010
I look like any other girl. I like all the things the other kids like, Soccer, Basketball, tag, and video games. But I’m a little bit different than all of the kids. I’m the daughter of Nicole Wardell. I’m ten-year- old and I have Tetralogy of Fallot, a heart defect. It affects my life a whole lot. It isn’t horrible but it’s not too fun either. If I could write a letter to all the kids in the world with CHD and their families, this is what it would say.
Dear children with CHD,
I’m Abby and I have CHD just like you. I’m sorry to say having this heart defect is not easy. It will affect your life a lot. I know you must have more trials than most of your family. In this letter you will not only find advice on how to cope with it but you will also find how I feel about it.
Are you made fun of just because you’re short? Don’t worry I deal with it too. Even though the teasing can get tiring I’m 10 years old and I can still be carried by my parents. So If I can still be carried you can probably be carried for a long time too. It will be a thing that I miss when I finally get too big.
Do you run out of breath easily? I do. What I usually do is stop and take a rest. Your friends might think that’s weird but tell them why you need to stop and they will understand. You probably won’t like that but in the end you’ll be happy you didn’t faint on the playground.
Do you tend to stay sick longer than the other kids? You guessed it, I do too. Whatever you do, don’t worry. It’s normal because of your heart. It isn’t fun but you’ll just have to live with it.
Having this heart defect isn’t too fun, but it isn’t always bad. My life is a lot like my friends. I like to read books, play the piano and the guitar, listen to music, play video games, and lots of other things. I get good grades in school and like to shop for clothes.
Doctor’s and nurses can do a lot to help us overcome our heart problems. This summer I have an open heart surgery. I’m very scared. Even though I don’t want to have it, I have to. It will be yucky, no doubt about that but, my heart will be fixed and I won’t have to deal with lots of these problems anymore.
Those of you reading this have survived the disease or know someone with the disease. Others are not so lucky. It is very sad but too true that thousands of kids around the world lose their lives to CHD every day. So please give a helping hand to those in need. I hope you know you’re not the only one who deals with these trials. Let’s try to deal with it together.
My friend Nicole the WONDERFUL photographer took some awesome Family pictures on April 11th here is a sneak peak at a few of all of us and some of the Twins!! She did a FABULOUS job and I can't wait to see MORE!!!
Friday, April 23, 2010
Wednesday, April 21, 2010
Other than these 2 things he is doing well. He is a bit fussy (who wouldn't be?) and he is very shy and clingy (who wouldn't be) But he has been playing and smiling some which is so nice to see!! Cayne oh my he must have thought I left him and was never coming back that baby won't let me out of his sight and he hates it if Maccoy is being held and he isn't.. Makes life interesting with 2 clingy babies and lots of stuff to catch up on! I am so glad to be home and have all my children to talk to and play with and hold,hug and kiss its the best!! I am even enjoying the laundry,dishes, and the fighting!!!
Tuesday, April 20, 2010
Oh Jen. D I know your reading this ... HOLLY COW thank you for the FOOD!! You guys are sooooo thoughtful. My family THANKS YOU A TON!! I won't have to think about lunches for a few days which takes a huge load off my mind!! The figurine brought tears to my eyes it was absolutely perfect!!
Monday, April 19, 2010
Hopefully my next post will be that we are on our way home!!!
MACCOY TRUSTON YOU ARE OUR HERO AND WE LOVE YOU MORE THAN WORDS CAN SAY!!!
Sunday, April 18, 2010
Forgot our FAVORITE nurse from PICU came to visit us tonight and I almost cried!! She was the BEST nurse I have ever met!! She said that they weren't busy in the PICU and I said let us pack up and we will be down in 20mins!! HaHa!!
STEPHANIE ROCKS!!! This girl really found her calling; she is so amazing with the patients, the parents and is Super Smart (oh and a little bit of a germ freak like me :) The first thing she did when she came on at 7p.m on Wed. night was wipe the crib, the machines, counters, computer keys etc. down with Clorox wipes. I thought to myself oh I am going to like this girl!!! Pictures coming soon!!!
His mood remains the same he is alert and tracks people but no smiles or laughs and I soooo miss them!
They may pull his chest drains out tom. we will have to wait and see what the surgeon says the drainage coming from them is minimal. They said they have to watch you for a day after pulling the drains so we may get to go home by Wed! But I won't hold my breath!! We still have the fluid in the right side to worry about so fingers crossed his chest xray tom. looks good!!
Two good things have happened 1. He is off the Oxygen and breathing room air and has a 93% O2 Saturation right now! 2. He doesn't have to be on all the monitors constantly which is less cords,lines,etc. to drag around when mommy wants to hold him!!
Saturday, April 17, 2010
Friday, April 16, 2010
I would like to Thank Amy and Jennifer for bringing Cayne up the last few mornings so that I can nurse him. I have unbelievable friends and I am so amazed that they put up with me!!! Nicole thank u, thank u, thank u, for the adorable build a bear and cookie bouquet absolutely adorable the bear is keeping Coy company in his crib! To Blake and Amber for bringing us lunch today so nice to have something besides this cafeteria food and the boys will love the toys!! And last and probably most important my Mother in Law Judy who has taken on the single parent role to 5 kids and 1 baby who I miss so so so bad... And to anyone who has left us kind messages,emails, texts or is praying for our sweet baby THANK YOU!
Gotta go they are about to do some procedures on the baby to help get rid of some of the junk in his throat and help expand his lungs..
Thursday, April 15, 2010
My arms hurt from not being able to hold him and comfort him the way a mommy should be able to. Sometimes the tears take over because its so sad to see him like this. But one hour at a time we are making it through
They have stepped him down on his ventilator settings in hopes of getting him off of it today but we will just wait and see.
He is moving around kicking his legs and moving his arms, but no open eyes yet.
We are taking everything hour by hour.
Wednesday, April 14, 2010
We have sent Cayne home to sleep for the night. And he is probably really tired thanks to Auntie Jennifer and Auntie Amy who have taken WONDERFUL care of him all day and given Mommy and Daddy a lot of time to focus on Maccoy. THANK YOU SO MUCH LADIES I LOVE YOU BOTH!!
Thanks to everyone for their encouraging words, prayers, etc.. We appreciate them more than we can ever express!
We went through the pre stuff very fast like in 20 mins.. After lots of tears from mom and many hugs kisses and I Love You's from Mommy Daddy and Cayne they took Maccoy away around 9:05a.m. He did great just smiled at us and looked at the surgery nurse funny and off they went.
We got our first update at around 9:40 they had him sleeping and putting in all his IV's and stuff..
10:50 update He is on bypass doing well.. Lisa the Nurse Practitioner from Cardiac said it should be about another 1.5 before they start to close... all is going smooth!
Tuesday, April 13, 2010
Updates coming tom....
I sit here and all I can think about is:
Cardiopulmonary bypass (CPB) is a technique that temporarily takes over the function of the heart and lungs during surgery, maintaining the circulation of blood and the oxygen content of the body. The CPB pump itself is often referred to as a Heart-Lung Machine or the Pump. Cardiopulmonary bypass pumps are operated by allied health professionals known as perfusionists in association with surgeons who connect the pump to the patient's body. CPB is a form of extracorporeal circulation.
Tomorrow we find out if we are going to proceed with surgery or if Maccoy's runny nose will set us back.. If its a go I have to hand my sweet baby over to a surgery team and let them cut him open and stop his heart... STOP HIS HEART......HURT HIM to make him better.... while I just sit and wait and wonder all the while my heart is breaking.. I am so scared... I cry, I scream, I hit the wall but I can't make this go away .. I have to pull it together for my kids I have to put on my big girl pants and a brave face kiss my sweet baby tell him everything is going to be fine, to be brave and strong and that I LOVE him soooo much and then leave him scared and alone and hope and pray he comes through all this with a mended heart..
Monday, April 12, 2010
Saturday, April 10, 2010
I went to the ortho dr. on thurs. he said I have a Avulsion fracture of my Cuboid bone. I don't need surgery!! But I do have to stay in this walking boot for 1 to 3 months :( at least I can take it off at night or through out the day! I am able to put weight on the foot as I can tolerate! It could have been worse but its kinda of a pain in the rear!!
This a.m. has been spent by the boys and daddy playing baseball and Mal,the babies and I shopping for outfits for our Family pictures we are taking tom.!! I am so excited to see what kind of shots my friend Nicole can get of these crazy kids! So look for those coming soon!!!
Well we are off to Sam's to stock up on supplies for Grandma Judy in case we get to go forward with surgery! Have a Great weekend everyone!
Thursday, April 8, 2010
Easter weekend was well Eventful!! Saturday we took the kids out to the annual Easter Egg hunt they had a blast hunting eggs, jumping on the moonwalks, and participating in the Egglympics! They got to throw eggs at a guy, do a egg sling shot, a egg obstacle course and bat eggs! They kept telling us Thank You for bringing us here it's so fun!! The weather was beautiful! After returning from the Egg Hunt Clint and I and the Kids were in the yard being silly when Clint decided that "mommy needed to be thrown in the trash" so he put me over his shoulder and went towards the trashcan I hit him and told him to put me down and that he did only I didn't get my feet under myself right and well after a pop and a ton of pain Clint carried me into the house sat me down and took off my shoe to find my food already swollen and purple. So finally on Monday I went into my Dr. and they did a xray and found that I have broken a bone in my foot. I go to the ortho Dr. today so we will see what they say :( The rest of the weekend I laid on the couch in pain with ice on my foot while Clint played Mr.Mom. The Easter bunny came to our house and the kids got lots of candy and a few little toys! Among the toys were water guns and with the weather being so nice they enjoyed playing with those all day Sunday!
Last week Cayne began to get very fussy so I took him in to have his ears looked at and they said both were infected they put him on antibiotics and we went on our merry way.. Tues he slept through the night for the 1st time since he broke his leg so I thought the ears were better the leg was good he was getting back to his happy sweet self but Wed he was so fussy didn't want his leg messed with or to be put down, when I took him to the park on Thurs. and he didn't even want to swing (which he loves) I thought something is wrong so around 5p.m. I unwrapped his soft cast ( i had to see what was wrong) and I am so glad I did . There on the back of his calf was a huge pressure sore it was red/purple/hard and had blisters on it. So i called ortho and the on call dr. said take him to the ER and have the cast put back on and I was like no way there is a infection here so we waited til morning being ever so careful with his leg and I called our ortho dr. who said no leave it off . So we we did and then we went back for our check up yesterday they did an xray and said its healed and his sore looks good! So we don't have to go back! Dr.Jarka said he should have no problems in the future from this injury!! Good News!!
The babies turned 9mths old on Sunday... They are so funny! They love to play together but they also like to fight! They are both great eaters! Maccoy weighed 19lbs 5oz on April.6th and Cayne weighed 20lbs5oz on March 30th. So they are growing great! They can sleep through the night when they want to! Cayne even with a broken leg managed to get around wherever he wanted! Since getting the cast off he has mastered crawling, going from a crawl to sitting,pulls up to furniture and gets on his knees and he even pulled up to a stand along the couch on 4- 6-10!! Cayne loves to shake his head no, says MaMa and DaDa.. Maccoy has mastered army crawling and goes pretty fast! He can go from crawling to sitting but doesn't do it often he says Dada. They both love me to sing The Wheels on The Bus and love to read books and watch all the activity around them!! such Sweet babies we love them so much!!
Mallory, Mason and Carter are going to be playing baseball/softball this summer! Wow are we going to be busy! Clint is going to help coach Carters team! Mallory has practice twice a week and from what I understand actually starts traveling to play other teams! Practice starts next week! This is only the beginning of how busy our lives are going to get! Oh the fun we are going to have!! I am so glad I had a ton of kids!! Even though the laundry for a family of 9 SUCKS!!! And various other household chores!!
Maxton has found a new love of Dinosaurs! He love the Jurassic Park movies!! Cavin is really into the book The Three little pigs and writing his name! Carter is reading!! Mason is going to Science Camp this summer and is soooo excited to "take things apart and see how they work" and Mallory continues to be the 2nd mother of the house, get straight A's and just be a "drama" girl! Clint got a promotion at work! I am so proud of him! He totally deserved it given his loooonnnngggg work weeks and his 24 hour/7day a week on call status!
So now we just wait to see if we make it to the big day without Maccoy getting sick!! Fingers Crossed!!