2 weeks

It has been 2 weeks since our sweet little baby had his 1st open heart surgery... He is doing well! He had a few funny things happen after we got home like his red skin tone/sweating but all that was checked out and determined to be fine. Then on this past Sunday he started being very fussy and not sleeping well at all finally I took him in on Tues. to just have him checked over and he was found to have an ear infection most likely due to being on the ventilator so we are treating that and today he seems to be a lot happier! He is eating like a champ in fact he can't get enough to eat! He is army crawling all over the place and playing with all the kids so he is almost back to normal!! He weighs 19lbs5oz which is only a few ounces less than before surgery so weight loss hasn't been an issue for him!! I know I haven't posted much about the surgery itself or what was found/done. We will know more after our appt. with Dr.Kaine our Cardiologist on May 19th, but they did have to cut over the pulmonary valve which overtime will start to leak and need to be replaced the general time frame we are told is anywhere from 5 to 20 years we just won't know until we see his numbers creeping up, while it wasn't the news we were hoping for we are just so happy that this surgery is done and it was as successful as it could have been and that Maccoy is here with us happy and healthy!!! I can't believe how fast he has healed? It is so Amazing!!

Twins

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.

To all my Heart Mom's..

A Study on the Stress of CHD Families….or You are Not Alone

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.

Understanding

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:

*shock

*disbelief

*confusion

*anger

*disillusionment

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

Letter From a CHD Survivor

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.

Your Friend,

Abby

Check Out the beautiful photo's and post !

http://luckyphotographer.blogspot.com/2010/04/meadesyes-you-counted-right-spring-hill.html



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!!!

Nicole's Pictures

Update

So we took Maccoy to see the surgeon yesterday and they have released him! They said his color being so red was either due to a allergic reaction to his pain med or from a virus he may have picked up at the hospital either way his heart is "ok"! They removed his stitches and steri strips and we got our first look at his scar while I wish it wasn't there at all it is and it looks okay (I must admit it was very hard to see it for the first time). He seems to be getting back to himself he is even crawling some,giving us smiles and playing with all the kids! We see our Cardiologist on May19th and we will go over the echo results better and find out what the future holds for Maccoy as far us future surgeries, check ups,echo's,cardiac MRI's etc.. This will never be over but this was a MAJOR hurtle that we have jumped over and we are pleased as punch at the outcome!!

Wondering?

So I had to call the CardioVascular Surgery Nurse today... Maccoy is a funny color.. very very very pink with a capillary refill of about 6 to 7 seconds and he is clammy which worried me but when Clint said I should call and ask them I thought fore sure it was something to worry about. I called and they talked with Dr.OBrien and he didn't seem concerned but did want to see us in the office tom. for a early post op check up so off to the hospital we go tom. :( hopefully leaving with good news! Just when you thought the ride came to a stop it keeps going...
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!!!

We BROKE Out of there!!

We made it HOME!!! Oh home sweet home!! We got here around 11:30a.m. Saw Carter before he left school! Maccoy sat on the floor for a few mins. and let his little bros love on him they were so happy to see him! He is taking a nap now and we are waiting on Mas and Mal to come home from school! Clints mom is going to leave us :( not sure what I am going to do tom. all by myself with 2 clingy babies (cayne has really missed mama and wants lots of attention too) but I will figure it out I am sooooo happy to be home and have this behind us!


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!!

???

The medical student just came in to check to see how our night was and she said "you may get to go home today?" I have no idea what this may crap is yesterday they were pretty certain.. Fingers crossed that we bust out of jail today we are sick and tired of being here!!

From that to This! AMAZING Huh?

Today Monday April 19th around 4p.m.... He is Back!!! We are THRILLED!!
Wed. April 14th around 2p.m.... The first time we saw him. Still a beautiful baby!!

He's BACK!!

Around 2p.m. our baby started to smile and talk!! OMG I can't tell you how HAPPY it made us!! Clint and I are both just smiling from ear to ear! He isn't 100% but he is doing 10x better than 9a.m. this morning! He went for his echo (sono of his heart) this afternoon to see how everything looks from surgery. He has vomited a few times today but they assure us everything is still ok and we should still be able to go home tom.!! Right now he is sitting in his crib playing with toys eating cheerios and saying DaDa.
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!!!

YES!!

His Drains were pulled about 5mins ago and he did Great oh how it hurt.. Hoping that was the last pull/poke this baby has to endure for awhile. Stacey one of the Cardiac Surgery NP's came in to do it she said his chest xray looked okay and that if his echo today and chest xray tom. look good we are going HOME tom.!!! She said he looks great!!! Oh what a relief it will be to put him in the car and drive home to our other kids! We miss them all sooooo much!!

Waiting

Its 6:30a.m. we just got back from getting Maccoy's morning chest xray and we are anxiously awaiting rounds so we can see what the plan is to break us out of here!! We are ALL ready to go home and really let the healing begin!! Hoping that they take these drains out this a.m. they haven't put much out in drainage for about 24 hrs! He must be watched for a day after they are taken out before discharge which would mean we could go home tom. but we have this huge issue of the fluid around our Right Lung which may hold us back from going home :( Fingers crossed we get good news! Will post as soon as I hear the plan

Almost

Nurse Stephanie and Maccoy Thursday 4-15-10 7a.m.


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!!!

Today

The anesthesia Dr. got a IV in after 3 sticks and then we came back to the room and the nurse flushed it and was about to give him Diuril (diuretic) and it blew.. I was so upset they stuck him 4 times today. I wasn't about to let them do anymore attempts on him. So they have up'd his lasix dose and started Diuril oral and his antibiotic oral. The resident Dr. actually said " I wish I would have done this right after the 1st failed attempt" duh really???
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!!

Sunday

Well we are still here and don't have any idea when we will be able to go home :( They said at least a few more days.. The fluid is still built up around Maccoy's Right lung even with the 2 diuretics he is getting. He still has the chest drains in and they are still draining. Yesterday both of our IV's got taken out because they were no good so after a few nurses looked one finally got brave and put a IV in his head which was fine but it "blew" this a.m. so another nurse came in and tried to put one in his foot failed attempt, they called the Flight Team Nurses in to do one and they tried the other foot failed attempt we are now waiting on Anesthesia to come and give it a try this is a "last" resort so I hope they get it we need this for the diuretics.
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!!

Quick Thought

I am sooooo Thankful and Lucky to be able to be here with Maccoy every minute of everyday.. I have the BEST MOTHER IN LAW that a girl could ask for because of her Clint and I are doing this together giving Maccoy the BEST most Loving Care he needs.. Because the poor sweet little baby across the hall has no one and just sits in there and screams and screams and it is breaking my heart...

Update

Well Dr.Swanson (our Cardiologists partner) was in this a.m. and I voiced all my concerns to her and then she hit us with some not so great news... Maccoy went for his chest xray this a.m. and appears to have fluid built up in his Right side the kind of fluid that the chest drains can't drain so she has up'd his Lasix to every 8hrs plus started him on another diuretic (have to check the name starts with a D) all to try and get that fluid gone if in a few days it is still there or getting worse he will need a chest tube to drain it :( We knew there was going to be bumps in the road and this is one of those, but on a good note she said he is doing very very well for this soon after surgery even with the bloating and vomiting which they see in A LOT of kiddos after surgery and she understood why I was concerned and frustrated she also said we are to stay on top on the pain med and that tylenol/ibuprofen aren't enough so she was going to tell the nurse pain meds every 4 hrs all day today keep him comfy! He did have a poopie diaper! And his belly isn't as bloated and hard! He is not smiling but he loves loves loves to hold mommy and/or daddy's hand and have us rub his head or arms. I have held him and rocked him and I am hoping to lay down today on our bed and cuddle him! He is such a trooper! The little girl in the room by ours was a heart kiddo too and went down for xray with us and her mom asked about him and I told her and she said her daughter was here for Tetralogy of Fallot too she is 10! So I have made another heart mommy friend! clint has gone home to take Mason to baseball practice and see the kids do some laundry take a shower help his mom and he will come back later and then I am going to run home feed Cayne and see the kids..So thats today's plan.

Frustrated....

So they moved us out of the PICU around 6:45p.m. Friday to 4 Southerland. It actually felt like we were being kicked out and rushed. I mean these kids go through major open heart surgery and are pushed so hard to come back to normal at a very fast pace. They tell you that once you move onto this floor they immediately start getting you ready to go home the only problem is, is that Maccoy who weighed 8.6kilos on Wed. before surgery now weighs 9.1kilos and hasn't been eating without vomiting it back up so what I am saying is he is FULL of fluid and poop.. I have asked,pleaded,cried,demanded that somebody do something to help him. His belly button is pooped out he is so full. I can't even hold him to nurse I must hang over his crib because he is so rigid/full he HATES to be held :( I know we are barely 3 days out from surgery but I did expect a little more concern for my babies discomfort? I did demand they give him a suppository so they just did that around 4:30a.m. and I made them call the Resident Dr. on call and send them in which they did and I told her that this is ridiculous and they have to help him! I am trying not to be rude but with sleep deprivation and pure worry its not working well.. So we are frustrated, but hoping to get somewhere soon.

2p.m.

Its 2p.m. we are still in the PICU, but all his meds have been stoped he only has 2 I'v's left out of 5, they took out the NG tube and the catheter and I have held him twice and even got to nurse him which he loved but his tummy did not and he vomited it all back up :( He is now sleeping and we are just sitting here resting and waiting to see if they will still move us to the regular floor today or we will have to wait til tom... His vital signs are great. He is crying a lot and moaning and seems very uncomfortable when he is moved from bed to mommy's arms but all that is normal.

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..

Good News - Long Night

Last night was a emotional roller coaster... If you would have asked me on Tues what I thought was going to be hard about this whole process I would have said "When they take him from me in PreOp holding because I know what they are about to do to him" Then If you would have asked me on Wed. what I thought would be the hardest part of the whole process I would have said "Seeing him after surgery so lifeless and full of tubes" if you ask me this a.m. what has been the hardest part it wouldn't have been any of those things it would be the sound of pain/confusion/hurt in my son's weak cry after they took the breathing tube out at 11:30p.m. last night it was absolutely awful mostly because I didn't want him to be in pain and because I couldn't pick him up to comfort him I felt so helpless all I could do was stand over his crib and talk in his ear and rub his face but it did little to quiet those weak cries. Since being extubated he is doing WONDERFUL!! They have given him morphine once at around 3:45a.m. after which I helped the nurse bath him and then much to my surprise she said "do you want to hold him?" OMG of course I would love to if I won't be hurting him and so that's just what I got to do cuddle my sweet baby for almost 2hours and I can't tell you the feeling of absolute joy/love/pride I had flowing through me. My sweet baby son is an absolute ROCKSTAR! He is amazing me every hour with his strength! When she laid him in my arms the feeling was almost like I had just given birth and had a brand new baby laid in my arms for the first time I am on Cloud 9 right now!! The surgeon has been around already this a.m. and they are weaning him off of his blood pressure meds, taking out his pacemaker wires, and start getting rid of all these IV lines/tubes and moving us off the PICU onto the "regular" floor this afternoon((at least thats the plan we will see how it goes but we are hopeful)!! Look at HIM GO!!!! More later they are coming in to take some stuff out!! Things are looking good this hour!!

10:00p.m. Thurs

Well they say even though no open eyes they are going to take him off the ventilator within the next few hours. So it appears it is going to be a long night. Please keep your fingers crossed that he comes off without problem and stays off.. Will update soon

5:30 update

Still on the ventilator on a very low setting. But he has not opened his beautiful blue eyes yet so we can't take him off the ventilator.. We have had some visits today from our wonderful Cardiology Nurse Practitioner Pam and our Favorite Cardiac nurse Ashley! Everyone is amazed at how well he is doing and how BIG he is! Everyone keeps talking about how CUTE/SWEET him and Cayne are! So we r just sitting here waiting to see when little man decides to open his eyes and say hello! Of course if I had open heart surgery yesterday I am not sure I would be opening my eyes yet!! I just want to crawl in bed with the little guy and snuggle and kiss him even with all the tubes/wires/alarms etc... he is still the cutest baby!! We are so proud of him and how strong he is amazes us!

3p.m. Update

He is still on the vent although it has been turned down and he is doing more of his own breathing. His doses of pain/sedation meds have been decreased. He has had some fluid output which was Great! He is still pretty puffy. His blood pressures have been a little high off and on. We have another great nurse today who is taking very good care of our little guy and I can't say enough about the wonderful PICU Dr.'s who are full of information and always willing to answer any questions we have.

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

10:45a.m. Update

Not Great but Not Bad. The main problem is no Pee.. He is retaining a lot of fluid ( he looks like a puffy marshmallow) they have given him a dose of Lasix (diuretic) and r checking the placement of his catheter.
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.

4a.m.

Its 4a.m. and thanks to Clint I got 4 hours of sleep! When I got back to the room around 3:30a.m. my baby was moving around, sticking out his tongue and even opening his eyes. The process of waking up from what I understand is a long one and very painful to watch so they tell us that today is going to be kinda ruff :( His vital signs continue to be good. His CO2 is a little low because he is over ventilating himself by breathing over the ventilator so they are working on that other than that his Labs are all good. They are going to start some Lasix to help get rid of some of the extra fluid he has building up. His fever is gone for now which is great. He is being a trooper..Hour by Hour we are moving closer to getting our baby back...

8p.m. Wed.

Today has been a ride.... As I type I am sitting here watching my sleeping baby and realizing that he is more beautiful and precious than I thought. He is still heavily sedated and will stay that way until tom.. His vital signs are good. And he has some amazing nurses taking care of him.. He has some hiccups right now which with all the tubes/I'v's/ventilator hooked to him looks kinda painful but they assure us that he is comfortable. He does have a low grade fever 101.3 that they consider normal during the first 24 hours post op so hoping that goes away.
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!

PICU

Maccoy is out of surgery and in the PICU. We have spoken to Dr.O all went well in surgery (details later) and we are waiting to be able to see him. They will keep him sedated for at least 24 hours..

Updates

We got a call at 6:50a.m. to come to the hospital ASAP as the 1st case was being pushed back .. So we hurried around and managed to get here at 8:15a.m. after we spent 40 mins in bad traffic on I35 (how do people do that everyday?)
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!

We are going ahead with surgery tom.. April 14th. We are Dr.OBrein's 2nd case of the day so we have to be there at 9a.m. and surgery if all is on schedule will start around 10 from what we understand.. So many emotions but no time to get into them.. Just holding on to my sweet baby very tight and giving him lots of extra kisses, hugs and I Love You's.. what else can I do.. I am scared to death...
Updates coming tom....

SCARED

Its after midnight I am still awake.. I am Scared, Sad, Angry, heartbroken.... My mind is racing.. I want to go to Coy's crib and scoop him up and rock him and kiss him and just hold him.. I want everything to be over and him to be alright and back home army crawling on the floor with Cayne poking his ears and giving me that beautiful smile that I LOVE more than words can say..

I sit here and all I can think about is:

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A Heart-Lung Machine (upper right) in a coronary artery bypass surgery.

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..

oh No :(

Didn't realize how much I had prepared myself and looked forward to this Wed. April 14th being here until Maccoy woke up with a runny nose on Thurs.... I called the surgery nurse and they said to wait til Monday and let them know how he is. The drainage is clear and he has no cough or fever which is good. So we are kinda up in the air as to what will happen. Which SUCKS! But on the plus side its a few more weeks with my sweet baby and watching him grow bigger and bigger if they do postpone surgery!!

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!

WOW... Thats All I Can Say..

We are now 6 days before surgery.. Time is flying by way to fast. I do have a few kids with runny noses and coughs so I am wondering if we will really make it to surgery on the 14th? So many things are already in place for this event, but they may all have to be rescheduled due to illness which is a relief , a pain, and a bummer all in one. Relief cause well who wants their little baby to go through open heart surgery with a unknown outcome, a pain for all the planing/organizing/preparing of all those that are helping out my family during the next few weeks, and a bummer cause we really just want our baby mended and this big surgery behind us... So we must just wait and see what happens and Keep our fingers crossed that we make it. If we don't we are thankful that Maccoy is doing so well and can wait a few more weeks! POSITIVE THINKING must take over in this situation I have learned that this fair in our heart journey!

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!!