It’s amazing as a Mom to a CHD Child what we find out that we already know! We keep hearing Kimmy is Medically Fragile. Yes she is still in away but she is more stable now then when she was first born we should know we sat with her day and night while she was heavily sedated to keep her heart strong. She was so unstable then not now. She was  listed as failure to thrive and still wears that label too but she’s thriving in her own way!!  We are trying to let Kimmy experience everyday things any child would like to do even if it’s outside crawling through a splash station. She will get a scrape a bruise but if she’s not crying and is not affected by it then why interrupt her joy her happiness of chasing her sister?? Yes Kimmy is still small and will always be a CHD Warrior but she needs to be normal and live she needs to feel the sand in-between her toes to be able to splash in a swimming pool. We as her parents agreed to let Kimmy experience all she can and to treasure every moment. Tell me how you can say Kimmy isn’t normal!! She is normal she wants to do things she has feelings she fears she cries she’s gone through so much that she doesn’t understand now but eventually she will be on top of the World. She will take that extra chance just because you can’t live with what if or I should of. Kimmy’s so strong willed and determined to do everything now we can’t limit her she’s trying to be a child and we are going to let her. CHD is only a part of our life it’s only a part of Kimmy. Unfortunetly CHD physically effects her heart but her spiritand personality show no signs of it.  CHD is always going to be there we know that and only time will tell if  DR P will be able to reconstruct her heart naturally or with artificial parts. Kimmy’s very lucky that she has been able to come out with very little delays or set backs. CHD is so misleading to people who read the text books but don’t look at the Children and Adults thriving.  Don’t sentence my Kimmy to a plastic bubble because you think she shouldn’t be doing things. She will never say I can’t do that because I have a CHD she will say Yes Iwill try it. Probably shouldn’t say this but My CHD Child is going to beat up your “normal”" child. I swear I need that on a bumper sticker or T Shirt to wear when some of her social workers come over. We know Kimmy is sick but to us she’s not she’s not in the hospital on a vent No NG tube no changing colors no gasping for breaths she’s Healthier and a lot better.  We still have the   to get through the Fontan but we don’t dwell on that we dwell on us being a family with happy kids and taking lots of pictures and making lots of memories. Isn’t that what you are suppose to do??  My first pictures of Kimmy that we took were when she was in NICU with maybe four wires and she was awake. I was asked why would you take pictures of that? With all those wires??? That’s my baby with all those wires and what if that I never had a picture of her because I waited till all the wires were gone. We know how serious this was we seen Kimmy getting bagged and suctioned every 20 minutes some days we were there holding our breath waiting crying  praying for it to be over and Kimmy to be stable. Just because you might have a degree doesn’t mean that you fully understand a diagnosis especially when your degree is not a doctorate. You will never understand you will never be able to say anything but I didn’t know there was so much   to deal with. What do you think when we live in one town and we have to travel almost two hours depending on traffic to get to Chicago the only place that will treat Kimmy. It’s not easy but we have things planned just incase we go into Kimmy mode we shuffle this and that and manage. I thank God that all we have had to deal with is little colds and a fever and yes we probably should take her to her peditrican more but when she’s breathign funny we think we are saving time taking her to the ER because we don’t want her to be going to two different places then being transported that time is precious if it is life threatning. I know most people don’t think of that but when you learn CPR when you sit with your baby and things are so unsure you learn that it only takes a second for things to change. We kept her out of  Daycare because that’s what the Drs wanted so we deal with the seperation anxiety and people wonder why we can’t even leave her sight. I wish that this wasn’t the way things were but I will deal with Kimmy clinging to my leg at least she’s here. We are grateful to have her and we cringe when she gets labeled. Just so tired of  being reminded Kimmy has CHDs she’s medically Fragile she’s Failure to thrive we don’t see that any more! CHD will always be there lurking in the background but  most importanly she is our daughter Kimberly!

On March 12 2010 Kimmy turned one!! I didn’t know if we would be able to celebrate this day with her!! I know the feelings that I have felt when we found out that Kimmy hadCHDs is still there. I think I felt every emotion possible scared sick to my stomach joy proud sad every emotion showed through. I would cry alittle then I would cry an ocean. We were able to bring Kimmy home early November. Thank God!! I was so glad she would be home for her big sisters B Day and the holidays. We had just moved in October to a house!! We were sohappy but then the visits to Chicago started up again. UGH we go up there for a 0930 appointment endup home around700 Pm!! The drive the waiting the Echos the ultrasound the Vitals the catching up and trying to leave with out seeing somone else on the way out we want to share Kimmy with her “2nd family” but on our terms sometimes we are just to tired we want to get back home ASAP. Every appointment I relive all the emotions everytime I see a baby in a store in the hospital resturant where ever I yearn for Kimmy when she’s in Chicago!!  We bring her up to Rush and it’s the same thing We are asked by security whose the patient when they had the Swine Flu precautions out I had just told him we were going to the 7th floor to the Pediatric cardiac clinic!! Is Cardiac such a foreign word??? We go to pre op and we just want to get it over with andare pretty confident but then that Dark Cloud starts to lurk behind us. We follow the nurses up to a exam room for the temp weight etc. Everyone is admiring Kimmy she’s so cute she’s so small and then What’s she here for. Cardiac cath we answer she has multiple CHD’s there’s that feeling that sick to my stomach feeling the emptiness. The whispers as we are taking Kimmy to her little spot in Pre op.Oh look at the Little baby wonder what’s wrong with her ? That feeling starts to come back. It’s time to say that word again CHD but to make sure everyone knows what it is we say the hole meaning too.The Joy when we hear she looks so good and is so strong Yup she’s our little fighter and miracle!! We get to hear five hours later she’s doing good but her shunt was closed a bit!! So they ballooned it and we will be spending the night! The Dark Blob is tapping on my shoulder again but he didn’t get through this time She made it through with flying colors they were taking her off the vent right away she was very alert!! Yes the wait  was over!! Nothing like pushing an empty stroller around a hospital!! We had a little Baby Bear coverup buttoned in it was dads way of it not falling out or off I thought it was funny here we are pushing an empty stroller around till we put it in the van. The stares were interesting to say the least. We get up to Recovery and there’s Kimmy rollin around trying to pull everything out. Yup she’s fine back to her normal self.  Felt bad for the nurses though they would walk up to her and she would cry. We got upstairs and Becki one of her favorite nurses was going to get her set up in her bed!! She calmed down alittle. Two weeks went by we learned yes she will need the Glenn procedure and the repairs that they were putting off. We had Early Childhood services come in and we had requested a dietician even though we thought it would be good to have so close to home and that maybe we might learn something. From the start she kept telling us Dad wasn’t doing things right and we shouldn’t be giving her certain things it wasn’t age apropriate. Rush said give her anything and everything!! We have a long list of foods. She does require a lot of attention and she aquried Seperation anxiety in the Hospital we can’t leave her sight sometimes otherwise she starts crying and gets all sweaty and will keep crying. Sometimes we are so tired that we might leave toys on the floor we will pick them up the next morning. Kimmy has CHD’s but she can go outside it was 60 and dad had her in her coverup oh and heaven’s to betsy she was in the stroller and had a bottle of Chocolate pedia sure next to her. We are over joyed that she will pick up her bottle and drink from it and yes pedia sure leaves chocolate mustaches we know that but when you are trying to get things done in the house or outside is a chocolate mustache really that bad??  You want Mom to call you sorry Dad knows what he’s doing and so do I ?? Dad mixed her formula from day one and so have I we have put NG tubes in so many times it would make your head spin. Dad and I had to learn CPR and warning signs that Kimmy could be in distress. We know how to use a pulse ox!!  When we tell you Kimmy is labeled as failure to thrive and she won’t gain weight in the hospital either. We thought you were here to help! Instead you made more stress. I should of cancelled your services after the second time but i thought you would call the DRs and read the countless papers we have from the hospital. We thought since you are a RN LPN this would be familar wrong it wasn’t. I keep having the Dark Blob tapping me on my shoulder. I try to shake it away but he keeps creeping up. Iam pretty sure that everything will be ok on the 23 but I will still have the blob bringing that sick feeling back and the pain of turning you over to the nurse to take you to the OR! I will never get used to that Feeling a nd I will cry me an ocean when I see children in the waiting area etc! I will keep fighting to get people to understand our life with CHD. I will fight for you. I can’t call CHD a monster it has taught us alot of things lifes little lessons. WE will never take anything for granted and again and we will always be grateful to have you.  So I guess CHD is bad but also has a purpose in our lives. It’s amazing how many people think they are god and theirword is golden. I hope that each one we encounter that we end teaching them something like compassion understanding and that theree are cases of complex CHDs that cannot be solved on the first try and that you shouldnot judge a book by its cover!! This has become our life we can put off picking up toys we can put off other appointments  we can wait to go to the mall to do normal things but we can’t let Kimmy miss her appointments and if it takes awhile to feed her it usually doesn’t but if it does then we will take the time. If we have to do things with Kimmy on our hip we will because that makes it less stressful for her. We wouldn’t wish this on anyone it’s that we would like some understanding that we are doing everything for Kimmy and that we know what we are talikng about. Iam praying that CHD will be known as much as cancer and that it does affect babies!! If anyone knows where sleep is hiding could you send him my way??  We didn’t chose this life with CHD but we are adjusting and coping the way we know how!

Ten months ago I was being told that my local Hospital wasn’t equiped to do a C- section on me since my plattlets were low!! Great more stress and Just what i needed more worries.! Dr didn’t think that my little girl was ready to come out even though things were uncomfortable and that she was already a big baby everyone else said she would be fine if delivered then. It was finally decieded that on March 12 2009 we would be transported to Rush University!! Great almost two hours away my kids would be in Braidwood and I would be in Chicago. I wa waiting for the Ambulance to come so I called some people and one was my best friend he was so positive and caring. It was amazing. John was trying to get Mark to school and get my mom to our house so she could watch Lilly and be there when Mark got home. I thought this was the longest day of my life. The ambulance came around 0930 it was refreshing to see that the guys were so caring and comforting not to mention so funny but very proffesional!! I cried in my room enough and I was trying not to cry infront of these guys. We went through all the lights sierns were blarring weaving in and out of traffic hitting every bump!! There’s no way to miss the pot holes on the Illinois Exxpressways. We arrived at around 1115am and they were taking about the pizza place done the street wish i could of joined them but next time. Amazing all the test they did to make sure I could have surgery and the papers to sign. I cried John could not be in there when Kimmy was born. I really needed him but they said it would be ok it won’t take long and then we could see her in the nursery. At 1832 Kimberly Ann Hicks was born!! 10lbs 12oz 22inches! We went to see her in the NICU which my heart sunk! The nurse said that she was in the regular nursery for about two hours but a nurse heard something when she was breathing and that her O2 was low so she was shipped up there. I was still in my hospital bed and couldn’t comprehend what was happening!! We were there because of me I was the one who should of had problems not Kimmy! For the next two days she was holding her  own then all of a sudden she coded!! We didn’t know till the next day I wish they would of said something!! That made them realize that they could not monitor her like she needed so she was going to PICU.!! Before though we meet with Dr Polminokos Iknow I spelled it wrong. He is about six feet and had big hands!! How somone could be so delicate and have nerves of steel is awsome.Kimberly’s diagnoses was Aoritic and Subaortic Stenosis Severe Coarction of the aorta. Malaligned ventricular septal defect.Narrow complex tachycardia that required amiodarone infussion. March 31 2009 Kimbery had Arterial banding so she could come home for awhile. The plan was to let her grow some more before her open heart surgery!! She came home for about 2 months then on August 11 2009 She had Norwood Palliation and palliative Rastelli 6mmRV to PA Gore Tex conduit non valve. We were sent home in early September Kimmy went done to 8lbs 6oz and with a NG tube. She is labeled as Failure to Thrive but I think she will catch up. She’s doing good we just need to watch her O2 now because her conduit might of calcium build up in it!! We hope not we were planning on trying to have a somewhat mormal life but if not if that’s ok because we have Kimmy and we will make the best of it weither it’s Rush or Home!!

We were not aware of any of this we are very grateful that we were at such a wonderful hospital and thankful for the nurse we heard something and didn’t ignore it!