I feel like you think it is funny to have tortured me for the time that Khloe has been here, I don’t think that you sending me into depression and not being able to function is not ok. I didn’t realize how angry you have made me at myself for so long and how horrible I now feel because I have just been on pilot mode for so long. I feel like i am coming out of a coma. I am coming to find that you are a horrible thing to my mind and I feel defeated in life because of you. I wish that everything was just better and I could get over it but I can’t, I am dealing with it but I feel like I have let down my babies and my husband because of you and because I feel like there is never sunshine on the horizon, I don’t like being Mrs. Doom and Gloom and I can not let it affect me anymore everyone see’s it. I am done. I have two beautiful kids one that you have affected for her life and my beautiful heart healthy boy which will deal with you on a different level. I know he will always worry about his big sister being ok and it is all because of you. My wonderful husband will just shove you down and try not to think of you as he does with a lot of things but you make me feel like I am right there again, I will have to get over that one day at a time. You will always be there but I will not let you interfere with my performance as a mother, wife,lover,friend and person anymore. I can’t it isn’t ok and we have to live together for the rest of our lives. So please try to ease up because if you don’t I think I will need a vacation at the looney bin for a little while and I really don’t want to do that.

Daddy has been there through everything, He doesn’t know how much I love him and need him and want to see him succeed in everything he does. Daddy loves you so much I think sometimes his heart would burst into tiny little confetti pieces when I see him smiling at you. Daddy has loved you even before he knew it. I seen it in his eyes when he held you for the first time and the first time you weren’t sterile and he could hold you in his arms for the first time again. Daddy will love you this much even when you are grown and living on your own, I know it in my heart and I see it in his face. Daddy has been very busy trying to make life good for you he love’s you this much. I hope that you and daddy always have a good relationship because I don’t think daddy would know what to do without his little girl. I am glad daddy loves you this much because my dad was never like your daddy is to you. For father’s day we are going to surprise him cause well he deserves a lot of credit for all of the things that he does. All real dad’s deserve credit and sometimes we just don’t tell them enough that we love them so, so remember daddy loves you this much and always will to the ends of the heavens and back again he will always love you this much.

Soo with all the trauma and craziness that happened with khloe the last few weeks in 2007, Today we were finally able to bring her home. They did all of the carseat testing and all of the you are a parent of a sick child video’s I had almost 3 hours in video’s from the 70′s to watch at least we got it all done. Today three years ago I was preparing to take me new child home a different child than what I was expecting to take home and a different child that I had brought home the first time around. I now brought a child home that had had major heart surgery and now so many other issues. We had doctors appointments at childeren’s every couple of day and then a few new people entered our lives. 1. the Occupational therapist, totally new word to me never knew people did this kind of therapy A.K.A Eating therapy.. we learned a lot the next year with her and I use those skills to this day even with my heart healthy kiddo, it is amazing what you can take from people that come into your life unexpectedly and 2. the Physical therapist, this I had heard of before but they do so much more and she taught me that Khloe wasn’t using her left side like she should be and well it is still a work in progress but you would never be able to tell today that things went wrong when she was closed up and her system was fighting to regain itself from not working at all. At this point we were so busy I don’t know what laying at home post partum was. I was driving after my c-section out of necessity I was not going to let my child be in the hospital and me at home whining about myself at that point it was never about me.. But back to today June 12th 2007 I was searching for a pharmacy to compund Khloe’s medications otherwise we wouldn’t be able to get home and I wanted after all of this to finally go home, I was scared but I was excited all at the same time. it took me all day and almost $100 dollars but I found a place to do it and it ended up only taking them maybe 20 minutes to get it done… Around 4 pm they said we were being released. FINALLY we got all of her stuff together in a wagon (my mom and I) and our journey at home began… with all of the wonderful therapist we have met and doctors that worked miracles, I am just glad to have finally been home, I know I didn’t sleep for forever just watching her breath and putting her back in the bassinet that she almost died in was hard but I found myself at peace just watching her sleep and breath on her own, I don’t think I slept for at least the first month of her being home and I know I would just sit there and cry some night’s wondering how horrible things could have really been. This day three years ago I shoved everything down and stopped thinking about anything and now today I have realized that we are not alone in this journey there are so many that have been in our lives for a little while and are now in our lives again or have just showed up in our lives and it is all because Khloe’s broken heart and I am so glad there are people to talk to and relate to and be around our journey really just started, but here we are today.

Ps. Daddy was working a lot through our journey I will end up writing a whole story on just him soon he was my strength and courage through all of this and when he got home from work that day the look on his face was priceless.

Today May 6th in 2007 I did not realize Khloe had multiple heart defects. Today was one of the scriest days of my life, I got up to feed Khloe after her crying all night (little did I know she was crying because her heart was killing her) and went to her bassinett around 4:30-5 am to feed, she was gasping for breath it was the worst sounds I have ever heard in my life I could never explain it other than I now know that it was blood filling her lungs and she was gasping for air suffocating on her own blood from her heart backing the blood through her pda, I remember how cold she was like ice and her color she was blue, I called my mom that’s all I knew to do I was in shock and I know mike was too. I know all I could say to my mom was she is so cold she is so cold. My mom had my dad drive me to the hospital at the time I don’t think mike or I were thinking and mike went to work, we ended up driving to the ER and they looked at khloe and got the specialized doctor that had done her internship at children’s and one look at Khloe and she knew something was wrong but what? Thank you Dr.Ferguson for realizing that it was her heart, Dr. Ferguson said that thanks to my motherly instinct to take her in soon rather than later was what saved her, to tell you the truth I think her PDA not closing let us know something was really wrong otherwise I think she would have died in her bassinet that night. I thank all of the men and women that saved my daughters life, not myself I should have realized something was wrong way before that time and taken her in when she was crying that evening. I still to this day feel horrible that I didn’t realize something was wrong we both had knew it in our gut feelings before she was born that something was happening with her that wasn’t right. *am we were flight for lifed to children’s that was the longest drive I have ever had in my life, the nurses kept Khloe alive in the ambulance but she was not stable until May 9th and that is when she finally had her surgery but we will get to that day here soon. I remember engorging in the ER and had nothing to pump with me, I had no choice I had to pump while I watched them put lines into khloe and try to save her life. I remember seeing the lactation consultant that I had when I was in the hospital and just losing it, she asked me why I was here and all I could say is my baby is really sick and just breaking down after that, She got my a pump kit and a pump for the er and I pumped right there a few feet away from Khloe at that point she was already on a coma. The lactation consultant was wonderful stayed with me to help me get the pump set up and I remember saying to her I guess I should just throw this milk away I had nothing else to do with it she said NONONONON and ended up going and looking for an ice pack and a lunch bag I still have that lunchbag. Khloe got to Children’s and I waited for hours and hours to see her they said maybe an hour they didn’t realize I was her mother. When I went back to see her I coudn’t believe my eyes she was bloated and yellow and purple and not breathing on her own and just not what I had ever expected to see, she was really really sick and all I could do was look at her and hope she came out of it. Our journey had begun and it was not where I expected to be. Khloe was sterile so I couldn’t touch her and my parent’s stayed with my until mike got there which was around 9pm he got stuck on a job and had no way of getting there I kept him updated but I don’t even know what went through his mind I can’t imagine having been in his shoes through this he had a very hard road to endure and I thank him for being so strong and supportive and woking when we needed him to most even when he couldn’t be with us. He was and is my compassionate and loving husband that has taken care of us through everything. So on this day in 2007 we learned the hard way about Congenital Heart Defects and it changed us forever.

Wow The day has come and at this time right now I was getting prepped for my c-section, Why? Because Khloe decided feet first was the only way she was going to come out. Wow I was so scared and worried but after a hard time getting the epidural in they had me prepped I didn’t want to have a c-section if I didn’t want to so they were just about to try and turn her as we speak I was in the OR and sitting on the table right about now and little did I know Khloe had a heart defect let alone multiple heart defects. Khloe was born at 11:10Am with perfect apgar scores at one and five minutes. She was gorgeous and still is and I am so happy to see her beautiful face everyday, I am very very blessed. Another year older and another heart doctor appointment coming up soon everything hopefully looks alright and hopefully this bluing under her eyes goes away we will see what doc Miyamoto sais in June. Wow time to go party please whoever reads this today celebrate the beautiful lives that are here with you or the ones that are with you in spirit because without them we wouldn’t be who we are today.

SO I should be excited and happy(and I am) that Khloe is here celebrating her third birthyday on May 4th but my mind goes back to those last few weeks of my pregnancy and the things that I was soon to learn. As the time approaches I think if her being flight for lifed and literally dying in my arms. Daddy wasn’t there but my dad was he watched me crumble he tried to help me keep it together and for that I thank him. I remember watching them shoving things into her umbilical cord and her being gone and not looking at me anymore. I remember not feeling any of the pain from the c-section I was in to much shock to think about myself and from may 9th on I don’t think I have ever thought about myself the way I did before and probably never will. I remember Mae at the front desk at Children’s Denver thinking I was the sister or family and me finally after four hours of waiting to see my daughter having the thought to ask if I could finally see her and her response being I thought you were her sister or something. I remember going into Khloe’s little room and her yellow jaundiced body bloated and sick, but I knew she was in good hands there was nothing that I could do but watch as they did everything to save her. I think of daddy finally get there at 9 pm and thank goddess that he wasn’t there to see everything especially her going into a coma I don’t think he was at the time strong enough. I think back to May 12th and remember not being able to touch her only her hands and fer feet and then rolling her down to ER for surgery… They gave us a private room and promised to call half way through surgery to let us know how things went, They did call and mike answered we were all on pins and needles waiting for that call I look back and I can’t imagine what everyone else was thinking. I remember the call daddy answered and they said everything was looking great a few issues but they were fixing them as we spoke. All I could think is miracle workers. I remember after getting out of CICU and back onto Nicu Khloe’s poor little lungs collapsed for the third time and they put her on CPAP she hated it, she wriggled the whole time and at that moment I seen the fight she really had in her. I remember her really waking up and looking at us and breathing a little sigh of relief but not exhaling completly. I Can’t believe it has been three years they have flown by. All I can say is here is another year and the memories I have are still vivid as if they were from yesterday, I am so proud to have my warrior and even with every issue and mountian of worry and appointments and everything in between I can’t wait to enjoy this third birthday with her and everyone that loves her as much as I do. So happy birthday Khlobugga mom and dad love you to the heavens and beyond. I will always remember that sick baby that I couldn’t touch for weeks and I can’t wait to see the beautiful woman you are going to turn out to be, Happy birthday baby girl a little early. I love you.

So I think of CHD every day of my life and all of the beautiful children that are not diagnosed with it and live for years not knowing. I just met a woman on facebook that wrote me saying that she had the same exact chd’s as Khloe and she has now gone through two heart surgery’s and lived with it for 31 years not knowing. I am shocked that people just don’t know at all that they have heart issues and that they can live without knowing. I am glad to say that she is a healthy adult with a new heart (she ended up with a transplant after trying to fix her heart did not work) and that I know someone with the same conditions as Khloe.  I think of all of the beautiful children that didn’t make it through their chd’s because they were not diagnosed. Khloe had a murmur after three days of us being in the hospital and the pediatrician decided that it was fine, Khloe had also almost lost two pounds and he thought nothing of it, looking back there was a nurse that asked for the pediatrician to come and check on Khloe and they didn’t. If I knew then what I know now it would have never have almost killed my child, Khloe’s heart would have never gotten enlarged by all the blood pumping backwards and her lungs would have never filled with blood if I knew then what I know now. Khloe wouldn’t have almost died in my arms if the pediatrician would have checked her with a pulse ox or an echo. I beat myself up thinking if I would have done something more my baby girl wouldn’t have suffered so much, I think about her breathing turning into gasping and now realize it was the blood filling her lungs and I did not know. I have to say that Khloe wouldn’t be here if it wasn’t for her PDA being severe and not closing because if it had we wouldn;t have known anything was wrong. If I knew then what I know now I would have went to that second ultrasound and not listened to the nurse say that is was a 30/70% chance that something was really wrong and it was probably just a toe that was crooked. I should have went to that ultrasound, I feel horrible for listening to that nurse on the phone telling me that Trisomy 18 was in the screen and it isn’t a big deal. Trisomy 18  has so many defects let alone stillbirth. I got lucky but I also found that trisomy 18 can cause two of the four defects Khloe has. I look back and wish I would have known more. i learned a lot in the hospital but I wish there would have been more before we were in the nicu.  Why didn;t I know more before her birth? Why wasn’t I informed of CHD’s they tell me to get checked for so many other defects why not CHD? I don’t understand.. if only i knew more. My beautiful baby boy was born heart healthy and happy as can be and there was so much more testing is it really that difficult?

So Khloe has her barium swallow study tomorrow at chop in aurora and what a long trip they always seem to be…. I never thought that we would be dealing with so many odd issues but they seem to make sense with what she has been through. I don’t want to go to chop the smell of the soap makes me lose it… but being there every six months I have to get over it, let alone all of the other things we have to go there for. I think I am over sensitized to all of these feelings inside me and I am not sure what to do with them. Sometimes I just feel so overwhelmed and no one really understands why, to tell you the truth I don’t understand it myself. I have to protect Khloe no matter what, after seeing her so sick and now running around me I worry about her not being able to catch her breath is she turning colors, if she’s eating is she eating enough…she is getting to skinny…. Is she veiling she shouldn’t be veiling why is she turning colors that are not normal? What is normal for her? She started saying that her leg hurts should I call the cardiologist they say that is a possible sign or is she just growing? Is it ever going to be ok? Am I ever going to be ok? So wow yea went on a tangent. Barium swallow study tomorrow two hours at chop have to bring food that she eats…. good luck with that….gotta bring a drink that I can do that’s all she will do…..we are so lucky but blessing come with a lot on your shoulders, I have a hard time handling it especially now that baby boy is here and ok. I guess I am still waiting for that other shoe to drop….

I can't believe she lookes like this

So here I am almost three years later and I am still traumatized by my first child Khloe’s birth and aftermath, Luckily she is still with us… I feel so blessed that we have her in our lives and that her fighting kept her here with us. I have seen so many sad stories of CHD kids in this last year and I can’t even wrap my head around it… Khlobug was born in may of 2007 little did we know she would be fighting for her life. I remember getting a call one day I was around the 16 weeks pregnancy status when they start all of the blood testing and it showed up that Khloe had a high chance for having Trisomy 18 which when I looked it up meant death period. Of course the nurses told me not to worry and things were fine and that it was possible something small like a finger or toe was the issue (they were wrong) and that she only had a 30/70% chance of something going on(we were in the 70%). Fast forward to twenty weeks we did the normal ultrasound and everything looked fine except for the umbilical cord Khloe only had a two vessel cord, she was supposed to have three chambers. I got yet another call from the nurses and they told me not to worry and that they weren’t going to schedule another ultrasound and so again we went on with my pregnancy not knowing anything. Khloe decided to go breech and no one believed me until the very end and one nurse decided to do an ultrasound sure enough Khloe could hear everything we said because daddy was whispering in her ear, I was scheduled for my c-section four days later I was so upset. Khloe came out without complications and was beautiful her apgars were 9 and ten at the marks. The pediatrition on call did hear a murmur but all babies have it and well Khloe’s pda never closed and the pediatrician decided even with the murmur to let us go home. The day we brought Khloe home I was so happy so proud and so tired, Khloe was fine until that evening we couldn’t console her she was screaming bloody murder and we had no idea she was dying, Khloe slowed down about two in the morning and I put her to bed woke up and fed around 4 am and something was not right her breathing was shallow and she was ice cold I have never felt anything like that and I hope never will again. My husband was up with me and we called my mom all I could say to her was that she was so cold my mom told me to go to the emergency room. I ended up letting my husband go to work that day and having my dad drive me to the hospital luckily he was right down the street working. As soon as we got into the emergency room they looked at her and had the on call emergency pediatrician come in and then things got crazy…. I ended up watching them put line into Khloe’s umbilical cord stump to try and get a pulse and Khloe went into a coma. All I really remember is wanting to curl up in a ball and being horrified at what my beautiful new baby looked like. it took them two hours to get the flight for life ambulance to the hospital and all I could do was wait. I was sick I called my husband crying and freaking out that is the only person I wanted there with me but in retrospect I am glad he wasn’t there I think he would have crumbled.. We finally arrived at Children’s of Denver and it took them four hours to realize that I was Khloe’s mom and I just sat there and waited because that’s what they told me to do. I finally got up and asked them when I could see my baby and the nurse took me back. Khloe looked so sick and she was. Hooked up to the tree with all of the medications running in her and the bloating had started and she was jaundiced it was the worst thing I think I have ever seen. We ended up waiting for three days for Khloe to be stable enough to have her closed heart surgery. I remember the Doctor coming in and letting us know exactly what the plan was and what Khloe’s exact defects were I was in a haze I remember hearing major heart surgery and possible paralysis and a possibility of her not coming out of surgery being able to walk or talk. Khloe has multiple CHD’s on her aortic side, Stenosis,CoarctationPDA and Bicuspid Aortic Valve. They have fixed things to the best of their ability and I was told that we had a miracle worker for a surgeon and they were right. Khloe came out of surgery and her lungs had collapsed when she was on shock in the emergency room and they ended up collapsing again and almost losing her after the surgery. it took a couple weeks for her to get back to “normal” and then we finally after going through nicu and cicu and then nicu again went to the stepdown unit icc. In icc we started having issues with eating and we think the intubation caused some damage to her windpipe we still to this day are working on eating and drinking issues. Finally we got to go home I was so scared we finally got to touch our daughter after so ling and hold her and I was scared that I was going to break her. We went home without oxygen and without a g-tube we got so lucky. fast forward to Khloe’s third month of life, we ended up back at Children’s in the emergency room Khloe was throwing up all of her feeds and was starting to jaundice yet again. we went home the first time and then the second round the night before my birthday we ended up in emergency again. Khloe had an obstruction in her kidney’s and in the main artery from her liver to her heart. We ended up in the liver center and were going to be going back into surgery. Khloe passed the stone that was twice the size it should have been I have no idea how she did it but it was nothing less than a miracle because that was the day we went in for the ultrasound to check and see what day we were going to go in for surgery or if Khloe was going to be admitted that day. I was in complete shock and relief and so happy I started crying tears of relief right there in the room. Khloe hasn’t had a huge amount of issues day to day sh takes heart medicine which I was hoping we could have stayed off of once I had gotten her off of it the first time but that wasn’t in the plans. Khloe has hypertension from her Coarctation and will probably be on medications for the rest of her life. Khloe is a crazy brother loving toddler and I am happy to say that her problems are manageble we see the occupational therapist weekly and then the physical therapist every three months for Orthotics and her meds daily but it is manageble. I am just glad that she has blessed us with her presence. Thanks for letting me post our story and be apart of this growing community of CHD kids and parents.