As this Friday approaches, May 21, 2010, I should be rejoicing and celebrating my little man’s 2nd birthday. He’s been through so much and defied so many odds, and all I’ve been doing is sulking. But you know…I’M DONE!!! No more pity-parties for me…until the next one…lol. It’s funny, my kids are doing so well, and doing so great, but yet, it’s so hard to not think about the past or the “what-ifs” or the “thens”, when we need to focus on the NOW. But how do you focus on the NOW? Even with my boys doing really well, my CHD family is still crying and grieving. We are grieving for our friends’ losses; we are grieving for our friends’ fighting to stay alive; we are grieving for our friends’ trying to get home, but laws don’t allow them to; we are grieving for our friends’ moments they don’t get to have or have to wait to have (taking our babies home, having those first hour snuggles, giving those first bottles or breastfeeding,); we are grieving for CAREFREE MOMENTS!

On Sunday, I had one of my worse Pity-Party Kind of Days. I was so consumed with grief; I was so consumed with the guilt of feeling sad, when the NOW is so good, and I couldn’t get over the THEN. I voiced/typed my sadness and frustration, and you know what I got? I GOT THE MOST AMAZING SUPPORT EVER. My pity-party could have lasted all day long, but with all the amazing support from facebook friends, I got over my sulking in less than an hour.  And the fact that I didn’t feel “alone” was so wonderful. Some replies I got were (I hope my heart friends don’t mind me posting, I did take names out):

• “oh girl…you are entitled to these “jealous” days….. believe me I have my fair share!!! Thanks for posting this bc sometimes I feel like I am the only one who feels this way, and nice to know its “ok” to have our weak moments. And yes,you are definitely blessed Smile and big heart hugs your way!”
• “I know exactly what you mean! but when i feel this way i am reminded that there are people who look at me and my kids, healthy or not, and feel a pang of longing bc they still waiting for their own. that quickly cures my emotions.” … “Naomi, and you other moms are allowed to feel all those things. never stuff your feelings! my Naomi has a year to in till her next surgery. what i said is just what helps me keep things in perspective when i get into a funk. bless you all!”
• “I feel the same way. I get jealous when I see babies drinking a bottle, Mav only did for three weeks and has a gtube, I get jealous when I see kids crawl, Mav can’t even roll. I get jealous when I hear people talk about going on vacation or just having fun, Mav is hooked to machines and its hard to even leave the house yet we are fighting to keep that house because of all this
  But then I think about it and know that our kids are even more special because they fight a battle every day. It takes a specail kind of person to do what they do. And it takes a special mother to deal with it day in and day out. So just remember our children are beautiful and the best picture comes from them even if its in a hospital or with feeding tubes and IVs.”
• “Oh boy do I get this Naomi – my worst feelings happen when i see someone breastfeeding a little baby. Hannah was 6 weeks old when I was told I would kill her if I persisted with feeding orally. I will never forget that moment. I dont think it matters how many years pass or where we are at right now with our kids, those memories of their first year … of life are so powerful and will never leave us. Write them down here as you feel them, I know it helps to know I am not the only one who feels like this xxx”
• “Been there, done that, doing it again, I’m sure. No need to feel guilty, it just comes with the territory. I’m glad other people don’t understand what we do. I wouldn’t wish it on anybody.
  We have frequent reminders (aka flashbacks), be it a cardiologist appt (tomorrow) or another one of his “fainting” spells a couple of weeks ago. (he’ll get mad, hold his breath, the eyes roll back and he goes “out”.) We’ll NEVER get used to those! All you can do is take it one day at a time. God bless.”
• “I REALLY get this and understand completely. What we are all talking about here isn’t Jealousy – it’s a form of PTSD. Not saying go get medication or anything like that… but what we have each been through is trauma… and yes, we will all have our “flashbacks”. For those of us with 2 CHD or 2 ill children, it’s like some strange combination of both “flashbacks” and “deja vu”. Usually combined with a weird “why me?”and sadness for the pain and trauma our children have to go through “why them?” Follow this quickly with a form of “survivor guilt”, because our children – surgeries and all – are still with us, and we have wonderful children, while some people do not and can not have them…
  I struggle each day knowing that I may never have an answer. Hoping that the work I can do here will someday lead to answers for my children, or for their children. If I have 2 CHD children, what will my children and their children have? For my daughter with CHD and a prosthetic valve – what will this mean when she wants to have children?
  not having answers for all those questions, but not being able to set those questions aside and make them go away!!
  For each of us, the questions are there. And each of us will struggle with guilt and anger for having those feelings and daring to ask those questions, yet they don’t go away.
  In my case, Faith in God helps, but it hasn’t taken away the questions. And each time there’s a new crisis, there’s new fear and new questions. And new prayers.
  But don’t let those questions get you down, try to focus those questions into something that will affect the future of CHD warriors and families and research and answers. Let all the precious CHD Angels NOT get us down, but lead us forward! Those things keep me going… well that, and my kids screaming for food and toys and rides to games and movies, and oh, yeah… LIFE : P It keeps going, doesn’t it?
  Yes, thank God for Facebook, because your daily people in your life may try to understand, but most of them cannot. Therefore, they don’t know what to offer you. We, as FB friends, offer great support and understanding, and sometimes the fact that we don’t have to face each other each day also gives us the chance to say yes, we understand, dump 3 paragraphs of our own feelings, and then tell each other to “buck up” and go cook Sunday Lunch, cause this is our life, such that it is… and remember, every body has their own trials and tribulations, and if all threw ours in one big pile, and inspected them thoroughly, we’d probably pick our own, same problems back up to take home with us… cause “the devil we know”…
  I may not KNOW each one of you, but for being here and asking the questions, and answering when we can – and dumping here Because we can – I ♥ each one of you, and your precious CHD BABES…everyone of them and everyone of us, has a purpose, whether we ever understand it or not.”
• “I am so sorry you are having a “down” day. The key is to “not look back” but appreciate the blessings of the present. Although, I know that is very hard. This is so much harder on the families, especially parents, than it is on your children. There was a survey taken of adults with CHD that revealed they would not change a thing about their life, because it has made them appreciate their life on earth, rather than taking it for granted. It has made them to be the person they are. So…heart hugs from all of us that have been in your children’s shoes. And thank you for all you are doing to help you children live as normal a life as possible!! We all appreciate it very much! Heart hugs!”

Well, last week was a busy week for us and it started with multiple DOCTORS!!! Monday morning we drove to Sioux Falls, to go to the Sanford Children’s Hospital, and started out with Jonathan having and esophagram done. HE SCREAMED THE WHOLE TIME! Even with him being very uncooperative, they got some great images, and he’s doing great She even gave him the clear, once he turns 2 years old, to be able to have a hotdog on occastion, as long as they are cut the long ways. We don’t eat them too often, but the boys love them at baseball games and such, so will be nice for Jonathan to join in on the fun.

After we were done getting Jonathan’s esophagram done, we did have a few moments to be able to go get some lunch and play in the waiting area. It’s so nice that they  have it set up as a Castle Theme. The boys love it. Gives them something to do, while waiting for things to get going. They also had some fun video game equipment set up, where the kids could play (or fight over) coloring a picture on a screen with their fingers, and once they were finished, they would press play, and the picture would start dancing around and such. How cute is that?

Once we were finished playing, we went in to see the cardiologist. Again, Jonathan was very uncooperative, but Thomas was such a trooper and so well-behaved (as always). I’m sure it’s quite refreshing for them, as I’m assuming, many little ones aren’t very cooperative. At one point, Drew, myself, and a nurse had to hold Jonathan down, to get the EKG and Echocardiogram done. Once we finally got all the results in, it was AMAZING!!! The boys are doing great. They do not have to be seen again for a year. PRAISE JESUS! I know, before the appointment, I was nervous for them to say a year for Jonathan, as that artificial piece inside of him scares me quite a bit, but if the doctors think he’s well enough…then…YAY!!! And Thomas asked if he could play hockey, which makes me a tad nervous, but Dr. Stamato stated, that as long as Thomas wears a protective chest guard, he’s clear fo hockey. The boys are just doing absolutely wonderful. She told us to just watch for signs and anything that seems odd or if the boys get really tired, to contact her immediately. She also stated in a year or two, that Thomas will wear a halter for a 24 hour period to monitor him for any arrythmias. She stated that she didn’t believe he’s having any of this now, and his heart truly looks great, but kids need to be watched, as things can develop. But NOW, right now, today, MY BOYS ARE DOING GREAT!!! I’m just so happy! What mother wouldn’t be.

We’ve now gone over 6 months without any big surgeries or hospital stays. Last year at this time, we were planning Jonathan’s 2nd open heart surgery in one year, had already gone through two heart caths, an esophagus surgery, and had already spent over two months in the hospital; one year ago, tomorrow, he was going to the hospital to have his second open heart surgery, that was cancelled, because of a minor cough; ago, tomorrow, Dr. Cicollo made the best choice not to operate on Jonathan, as we don’t know if he could have made it through, because a few days later, Jonathan landed himself in the hospital for over a week with a bad cold/infection. Last year at this time, we were all scared, miserable, and nervous wrecks, but TODAY, all I can say is PRAISE JESUS! We’ve had many people come into our lives the last few years and just offer wonderful words, hugs, and blessings. All I can think of is all the people who have helped us in our journeys. Everyone has been amazing, all our family and friends, and complete strangers even. THANK YOU!!!

TODAY, ON FEBRUARY 8, THOMAS JAY ANDERSON, MY SON, ACCEPTED A PROCLAMATION FROM MAYOR HOBART, OF SIOUX CITY, IOWA, DECLARING FEBRUARY 7-14 AS CONGENITAL HEART DEFECT AWARENESS WEEK. THOMAS IS A CHD WARRIOR/SURVIVOR, AND HAD OPEN HEART SURGERY FOR TETRALOGY OF FALLOT WHEN HE WAS 8 MONTHS OLD. HE IS NOW A 7 1/2 YEAR OLD IN 2ND GRADE, WHO LOVES TO PLAY BASEBALL AND BASKETBALL AND HIS FAVORITE SUBJECT IS MATH. HAD TO SHARE THIS, AS THIS WAS A SPECIAL MOMENT FOR OUR SIOUX CITY FAMILY, AS OUR 20 MONTH OLD, JONATHAN ANTHONY ANDERSON, IS ALSO A CHD WARRIOR/SURVIVOR, BORN WITH TRANSPOSITION OF THE GREAT ARTERIES, DOUBLE OUTLET RIGHT VENTRICLE, AND PULMONARY ATRESIA, AND HAS GONE THROUGH 2 HEART CATHS AND 2 OPEN HEART SURGERIES ALREADY; HE’S FULL OF SPUNK AND ATTITUDE AND HAS CAUGHT UP SO MUCH, EVEN AFTER SPENDING 3 MONTHS IN THE HOSPITAL FROM BIRTH UNTIL NOW!  I ALSO SPOKE A FEW WORDS THANKING THEM FOR THIS PROCLAMATION, BUT IT WAS SUCH A HEART WARMING EXPERIENCE, I HAD TO MUMBLE THROUGH IT A BIT AND GOT CHOKED UP A FEW MOMENTS:

Thank you Mayor Hobart…I will proudly accept this proclamation from Sioux City, on behalf of all CHD Warriors, in declaring February 7-14 as Congenital Heart Defect Awareness Week! ♥ ♥ ♥ God Bless all of our CHD Warriors and Angels and Families ♥ ♥ ♥ I am blessed with 2 CHD Warriors and SURVIVORS, Thomas and Jonathan, and my son Samuel, my husband, and myself will ALWAYS stand by and help our boys push for more AWARENESS and RESEARCH ♥ ♥ ♥ I hope with this continued support from our city and state for awareness, that more expecting mothers won’t ONLY have ultrasounds done to see what the sex of their baby is, but also, at the same time take an extra 15 minutes in having an echocardiogram done, to makes sure their babies’ hearts look good and HEALTHY, and with this, will also have mandatory oximetry tests done on ALL newborns, which is cost effective and takes less than 5 minutes, to possibly save a babies’ life. Without the oximetry test and our amazing doctor’s intuition, Thomas may not be here today, and because of Thomas’ pre-existing condition, we were given echocardiograms on both Samuel and Jonathan, while I was pregnant, where most wouldn’t have been given this test, and we found out about Jonathan’s severe heart condition. Because of the results of the echocardiogram, the doctor’s were ready to perform emergency surgery hours after Jonathan was born and his life was saved. Thank you again, Mayor Mike Hobart, the Council members, and all of Sioux City for your continued support. I truly believe this is a step forward in saving many of our children’s lives. Thank you and God Bless.

MOMENTS LIKE THESE MAKE ME SEE HOPE FOR OUR CHILDREN’S FUTURE, AND OUR CHILDREN’S CHILDREN’S FUTURES. THIS ONE WAS FOR ALL THE CHDers (ANGELS AND SURVIVORS)!!! ♥ ♥ ♥

CHD Awareness to me means telling people I am BLESSED with 3 beautiful children, two of which were born with a congenital heart defect, and have SURVIVED 8 surgeries between the two of them (5 surgeries being on their delicate and beautiful hearts).

CHD Awareness to me means telling people the doctor’s said my boys may not see their first birthday, let alone their first hour of life and NOW my “CHD boys” are 7 years old and 20 months old.

CHD Awareness to me means telling people to get their echocardiograms done while they are pregnant for peace of mind, and having  game plan set ahead of time with the doctors, if they do catch something, because my 20 month old may not be here today if his condition was not caught when I was 20 weeks pregnant.

CHD Awareness to me means telling people my children are “Warriors,” if people ask about their scars at the pool, and seeing the pride in my son’s eyes as he shows off his scar with pride and says he has a matching scar like his brothers.

CHD Awareness to me means finding wonderful and supportive “CHDers” and “heart parents” who you can sit down and have a conversation with and feel you could “hold your own in a heart conference” and learn from each other and are their for each other when we have a break down and need to vent, because not everyone understands.

CHD Awareness to me means telling people facts like “About 1 out of every 100 babies are born each year with some type of Congenital Heart Defect. (approx. 40,000/year) Source: Children’s Heart Foundation” or ”This year approximately 4,000 babies will not live to see their first birthday because of Congenital Heart Defects. Source: Children’s Heart Foundation” and seeing people react from not being aware.

CHD Awareness to me means telling people my kids are great, wonderful, stupendous, but NOT CURED.

CHD Awareness to me means watching my 7 year old go to school with pictures and a smile on his face and do a show and tell presentation on all he has been through while only 8 months old and tell people, “Now I play baseball, basketball and I am the Math King in 2nd grade.”

CHD Awareness to me means doctor’s appointments, echocardiograms, EKGs, heart catheters, being a little more overprotective, watching my baby have to have monthly synagis shots during the RSV season, watching for blue spells, taking all bumps, bruises, coughs as a possible sign, and LISTENING to my son if he feels something that just doesn’t seem right.

CHD Awareness to me means getting the word out each and everyday, whether it is telling my sister about echocardiograms, or telling my friends about oximetry tests, or writing a letter to Oprah, or doing a “Walk with the Heart of  a Child” through the mall of Las Vegas, or watching my son do a show and tell. CHD Awareness is a part of our everyday life. We didn’t choose this life, it chose us. We are a family of five who try everyday to live a normal life and allow our children to participate in sports or play video games or do math competitions or just go to the park and run around and just enjoy life. We hug each other tighter, we love each other stronger, and we don’t take each day for granted, because the Lord gave my beautiful boys a second chance, in turn giving me as a mother as second chance, and we are taking advantage of these moments and embracing each and every one of them.

Proud Mommy to Warriors

I’ve been sitting here trying to think about HOW I feel or WHAT I feel…and trying to come up with the right words for it…I feel I have been dealt an unfair deck…I feel selfish that I think I have been dealt that unfair deck, when in fact, my children got the raw end of the deal…I feel like I’m slowly drifting back to the days of that horrible anger I had 6 years ago…I FEEL ALONE…there are very few people in this world who can understand the feelings I’m having (that’s a good thing)…but yet, way too many people do indeed know what these feelings are…more than I wished ever knew…and unfortunately, there are people out there who have been through worse than I.

Almost 7 years ago on the 27th of February, Thomas, my now 7 1/2 year old, then, 8 month old, went through open heart surgery, for a condition called Tetrology of Fallot (TOF)…I went 8 months before that cursing the Lord and blaming God for doing this to my child. Yelling and cussing at the Lord for punishing my child for my mistakes. And then, that day of surgery came, and I asked for forgiveness and asked Him to protect and watch over Thomas for me…and He did. Thomas came through the surgery with flying colors…there were some bumpy roads along the way…like him going through drug withdrawls from all the medications he was on and incompatant people scaring me so much that I almost passed out…but Thomas made it through it all and so did I. Two years later, we had to watch Thomas get cut from the other side as he had back surgery to repair his congenital scoliosis, which without it, my spunky 7 year old would most likely be paralyzed and in a wheel chair today…instead…he plays baseball and runs around like a crazy little boy…AMAZING…Thomas has a slit on his chest and on his back and is the most caring, PERFECT, little boy a mother could ever ask for…and an amazing big brother. To this day, I know that Thomas is the reason I was brought to the Lord. Thomas is the reason that I changed my ways and walked away from certain people and certain situations and lots of stupidity…Thomas saved me, in turn brought me to the Lord. And everyday I hold onto it…and lately, it’s the only thing that’s been getting me through this last year or 2 years.

Almost two years ago, we found out that our third son was also going to be a Congenital Heart Defect (CHD) baby. After going through everything with Thomas, and then having Samuel, who was perfect and healthy and a brat at times, but the love of our lives, we never imagined we would have another baby who would have to go through open heart surgery. And to top it off, it was more life threatening than Thomas’. Who would have ever thought there was something more serious than what Thomas had to endure? When I was 6 1/2 months pregnant I had to go on bedrest due to Jonathan being way under the size he should have been and a cardiac baby. Not only was I taken from the place that let me forget about everything to come, my work, but I had to sit around and feel completely helpless and have so much time to think and ponder about what was to come and what could happen. It was agonizing! Then the day came when Jonathan was born, and I literally got to see him for 30 seconds before he was taken away to the NICU. A team of doctors and nurses flooded my room an hour later and gave me the details…he was going into surgery in one hour for a minor procedure on his heart that would help him live for a couple weeks ’till surgery, the next day would have esophogus surgery, as his esophogus and stomach were not attached (what more?) and a couple weeks later we found out that he had to be flown to Los Angeles from Las Vegas, where we were living, because his condition was so severe, the surgeon didn’t feel he should stay in Las Vegas…THANKS SO VERY MUCH FOR THE NEWS…Needless to say, Jonathan did amazing (that’s an understatement…there are no words to describe how strong this little boy was)…my family and friends came together and prayed and took care of Thomas and Samuel for us, so we could be there for Jonathan…EVERYONE, WE OWE SO MUCH TO FOR GETTING US THROUGH THOSE 2 MONTHS…and since then, it’s been wonderful and amazing and I wouldn’t change it for the world…I always knew Jonathan would have to have surgery again someday…we were hoping for 3-5 years. In February he had a procedure (I keep calling it a procedure, because it doesn’t sound as bad as surgery, but yeah, it was pretty much surgery)…the procedure came back with half good news and half bad news. I knew in my heart that Jonathan was going to have another open heart surgery for the last 2 weeks, but I was holding onto a miracle…but I guess that miracle didn’t come soon enough…because on April 27th, Jonathan went through his second open heart surgery. I thought the news wouldn’t hurt as much, as I’ve been expecting it, but I guess I was in denial at the same time. IT SUCKS! There was nothing I could say as a pep talk to myself…I knew in my heart that Jonathan would do fine and be home soon afterwards…but…IT SUCKS…It’s not fair that my baby had to go through this yet again, so soon…he was 11 months old and was yet again going to be taken away for a week…yeah, I know, a week isn’t that long, compared to the lifetime to come; that’s what I’m holding onto…but..IT SUCKS! But the only thing that matters, is he did spectacular…He’s doing awesome now and started walking at 14 months old…This “unfair deck” can be taken away at any time though…I seriously am begging for it to…I want to be able to go on with my children and their lives and be left alone…but I know that will never happen.

I know the rest of my life I will worry…because it’s something, as a parent of a CHD baby, we have to be ready for. We will never have that normal life that so many of our friends and family have had or will have…we, as a CHD parent, will forever and for always have that little green envy monster popping it’s head out when someone has the perfect pregnancy or perfect baby…we, as a CHD parent, will always hold our breath for our friends and family during their pregnancy, as if it’s our own child, and cry and rejoice when that beautiful baby is born healthy and whole and perfect…we, as a CHD parent, have had our lives changed forever. We go on with our lives everyday, trying to fit in and not let it change us, but it’s too late, it has. I am a CHD mommy…I will have my outburst…I will have my moments where I break down in tears, for no apparent reason…I will love my children and hold onto them tighter than anyone can imagine…I will devote my life to my children and for my children, like tomorrow may be my last…I am a CHD mommy. Someday, down the road, I can only hope for a decade of no surgeries or less worries and great reports…but for now, I hold onto that day that I get a smile or a hug from all of my boys…my CHD boys and my little brat of a boy (which they all can be, but I LOVE IT)…My children are my life, and no one can say anything else to me to make me feel bad because I don’t want to go somewhere and I want to stay home with my babies, even if I have been with them all day. I will not let a certain someone (who supposedly cares for my family) bring me down and ask me, what if they die…fyi, that’s the stupidest thing to say to a CHD parent or any parent for that matter, use some common sense…because everyday, I have to understand the risks of all the surgeries, procedures, and life in general…I know the risks far too well and have said good-bye to far too many angels…but I know more than anything that I do have the Lord, MY GOD, holding onto me, holding onto my children, and holding onto those doctors delicate hands as they operate on my baby and my friends’ babies. I just pray for strength, strength of my baby, strength of myself, and strength of the doctors and nurses to get us all through the days to come…I pray for healing, healing of my children and other children and healing of my and other parents delicate emotions, that I wish weren’t so delicate…I pray for faith, faith in my God and faith in myself and faith in the surgeons, doctors and many nurses who have my baby and other babies in their care…I pray for God’s grace and mercy. And thank you to everyone who’s always been there for me, for us, with a simple, yet perfect prayer, for that kind gesture, a hug or a smile, or just that friendly word that you are thinking of us. Thank you to everyone who’s been there for us through everything…especially my family and friends who have taken my children and not let them experience the hurt their parents suffer and give them a day of fun in the sun while their sibling has a life saving operation…just…THANK YOU AND GOD BLESShttps://www.carepages.com/carepages/CHD-BROTHERS