Praying for Sweet Ava

Please help Sweet Ava by saying a prayer for her continued strength and healing.. She is a 3 year old from my home town that got very sick a few weeks ago with Influenza and more she is fighting a really hard battle and could use all the prayers your willing to give..
Thank You
This Note is written by her mother


Good News/Bad News

.by Shana on Wednesday, April 20, 2011 at 5:48pm.Today didn't go as we planned, but we did end on a positive note with Miss Ava. Ava is still on the ECMO machine. Through the night her vitals (oxygen levels, CO2 levels, etc.) were not strong enough to take her off the machine. The drs. made the decision about 3:30 this morning and she is back fully on the machine. David and I were very disappointed, shed our tears and decide that today just wasn't her day and her day will come soon. Ava's internist presented her case to her other colleagues (some of who we have worked with on day and nights in the PICU) to seek additional input. They all suggested the things that we have been doing and that have been recommended. After the disappointment of not being off the ECMO machine the drs. wanted to do another bronchoscopy on her to see if they could loosen and suction any of the "crud" in Ava's left lung. We did that this afternoon and they were able to ride Ava of some of the material that has been sitting in her lung and there is some air in that left lung where it use to be predominately white. We were very excited to help clear some of her lung. The drs. are wanting to do that procedure every day to see what all they can rid of for her to help re-inflate the lung. The drs. are starting to get more aggressive with her treatments and one thing that they want to do is a CT scan of her. She has some swelling in her belly, they haven't seen anything of great concern via x-ray, have made some suggestions on what it is that could be causing it, but until they can get a CT scan they don't know exactly what and how to potentially fix it. Most of the time they don't do CT scans with patients on ECMO just because of the ordeal it is to have it done, but we have to determine what the issue is with Ava, so tomorrow morning Ava will be moved to radiology for the CT scan. It will take a team of people to move her because the ECMO machine, ventilator, tubes, etc., etc. etc. that have to go with her. I lost count after 15 they told me would be with her. It is very stressful for David and I just to see the 3 people it takes just to shift her in her bed, let alone what tomorrow will bring. We know that this is the best thing for her and what we need to do to help her. We are hoping to receive some positive news regarding Ava and any damage that may or may not have been done during her cardiac arrest and depleted oxygen. We are hoping and praying that the CT scan shows no major concerns or something that can be easily "fixed". She is being such a strong little fighter and we are so proud of her. We keep telling her how proud we are of her every single day! Thanks again for the all the kind thoughts, prayers, cards and messages. We feel very blessed!

Hug your children tightly my friends.. If there is one thing I have learned from having a baby with a major medical problem it's that It can HAPPEN TO ANYONE and It could be a lot worse.. Right now I know of at least 5 families dealing with horrible issues with their children and I know there are hundreds even thousands more..

Maccoy's Heart Hero Cape.. (more details soon)

Maccoy and his Heart Hero Buddy Immanuel(TOF)

April 14th 2010.. Our first time seeing Maccoy after Surgery

Last Year on this day April 14th We handed our son over to surgery nurses. What at the time I thought would be the hardest part of the whole process. Handing him over knowing what was about to happen and not knowing if I would see him again. Oh boy was I wrong. The morning started off with a 6:45a.m phone call from the surgery clinic saying we needed to get there ASAP as the first case was having issues with blood so Maccoy would be Dr.OBrein's first case instead of his second. We flew around getting ready, I woke the kids so they could kiss and hug their baby brother and I stood in the corner sobbing at the scene before me.. The older kids were scared and Maccoy had NO idea what was going on. The drive to the hospital took a lot longer than the normal 30 mins it was rush hour. We arrived in the surgery clinic at 8:20a.m. they rushed us back to pre op holding where your typical wait can be at least an hour ours was 15 mins if that. They took us out a door that led to the OR hallway this is where we would give our last hugs, kisses and I LOVE you's. As they took him from me he just had a look of what where are we going they walked away and I just squeezed Cayne and cried, Clint and I held each other we were so scared. We made it to the waiting room and I sat in a chair and held Cayne and cried I didn't care who looked at me, I didn't hear anyone talk to me, I do remember one of the front desk volunteers offered me a room to go in and take a moment but I couldn't move. Clint left and went to get us a drink. During the surgery a CV nurse practitioner would come out every hour to give us updates. Our first update came at 9:40a.m. Lisa came said all his I.V's, wires, tubes etc. were in he was sedated and they were getting ready to make the first cut. I had asked my Best Friends to be there with us to help out with Cayne and of course being the wonderful women they are had agreed! Jennifer and Amy arrive right after the first update. I was in a daze. I don't really remember much just that they new what to do without being told, they could tell I was out of it. They asked some questions about feeding him and changing his diaper etc.. then took him to walk around. I realized I forgot something in the car so I made a mad dash to get it. I really went to loose it. I never told anyone that, everyone offered to go for me but I sad No then I went to the parking garage got in the car and screamed and cried and punched the dash..When I came back I had gotten a call from my parents that they were at the hospital so I went to find them, we got another update from Lisa just as I walked back into the waiting room all was going well that was around 10:30a.m. I had to pump and nurse Cayne. I tried to sit and carry on conversations with my friends and my parents but I almost felt like someone was sitting on my chest. I just kept thinking about how much pain my baby was in and how unfair all this was and why did it happen to him?? Our next update from Lisa came around 11:15 he was on bypass and all was still going well, she said it would be another 1.5 to 2 hrs before they began to close his chest.The next upade would come after 12 that things were still good, we asked Lisa some questions about the pulmonary valve but she said we would have to wait for Dr.OBrein. Around 1p.m. she gave us our last update he was finished they were closing him up and then she moved us from that waiting room to the Ronald McDonald waiting room from here we would go to the PICU waiting room. Once he was settled in the PICU we were allowed to go back to see him (only 2 people at a time and only people the parents had ok'd) This is another one of those times that I was so Thankful to have Jen and Amy around to take care of Cayne.. When I first laid eyes on Maccoy I didn't see the wires, machines, IV's or even that ugly chest dressing all I saw was the most beautiful baby ever oh how I just wanted to scoop him up and run, he was so swollen and lifeless. I was scared and worried. I cried and just laid my hand on his little hands and prayed.. The days in the PICU were definitely hard the watching and the waiting but the Care was AMAZING! Of course I have talked a lot about nurse Stephanie best nurse ever!! After the ventilator came out things started moving pretty fast and 2 days in the PICU we were on our way to 4 Southerland we moved there on Friday evening which I think was the first mistake because after we moved to the 4th floor our care wasn't good. As far as I am concerned that's when it all went down hill. Blown IV's, which required the flight team to come try putting one in and a trip to the OR recovery room where a on call anesthesiologist put one in only to have it blown on the first flush back on the 4th floor, it was also where I had to beg and plead to get pain meds and suppositories and finally I had to get a Social Worker to get everyone to STOP coming in our room and waking up a resting recovering baby.. But he had Clint and I there advocating for him he was NEVER alone unlike the poor heart baby across the hall that spent more time alone, crying and in a travel swing than any baby should have to :( The day we walked out of CMH was so happy! Although we know Maccoy's Journey is never going to be over he is here with us happy and "healthy" and we are so grateful! He is is my hero!!

HAPPY MENDED HEART ANNIVERSARY MACCOY TRUSTON!! WE LOVE YOU TO THE MOON AND BACK ALWAYS!!

Maxton went in for his PreK screening last week today I found out the results.. TOTAL BS.. They actually told me the Speech Therapist found an issue.. You have to be kidding is what I said.. This kid has been talking like a 12 year old since he was 18 months old ( ok that's pushing it a bit). For pete sakes the kid uses words I don't even think of and he talks as clear as the night sky.. I went in with this whole so he is "dumb" he gets free prek attitude because I knew I had been slacking on teaching him things after Carter I took this whole they have to learn for so long why not let them be kids attitude, well maybe I should rethink that?? I read to him which he loves, I do work on colors and counting but he HATES to learn from me has zero interest so I don't push. I do attempt it daily but it NEVER works he still calls red orange an blue purple he counts the way Maxton counts 1,2,3,4,9,11, etc.. even when told it's wrong, he draws straight lines with a curve in them and never knows square or rectangle.. I remember being told by a friend a few months ago that her son who is 8 months older than Max could read, I then called my friend who has a lot of kids too and began sobbing that I was a horrible mother and she said "NO your not my kids couldn't read until after kindergarten either and my oldest can't put books down now don't worry" it made me feel better, but after today's meeting I feel like I walked out with a BIG F on my shirt and a why do you have so many kids if you aren't going to teach them as a grade :( I vow to do better! I will start looking for more creative ways to teach Maxton and the twins. But in the meantime we will continue to dance around in the rain, make mud pies, have tickle monster fights, play power rangers, and just enjoy the time we have together before half his day is spent in school and half my day is spent missing him.. No matter what anybody says I know my Maxton is SMART! He is going to be something WONDERFUL when he grows up and then I can take this stupid evaluation and BURN IT!!! I love you Maxton and your STUPENDOUS!!!

Being a Mom is a very hard job.. It's like walking around with a piece of your heart on the outside of your body (quote from someone I can't remember but love).. All the fighting and the messes don't out weigh the love the kisses the hugs and the laughs.. Everyday at least 10 times I am reminded of why I CHOOSE to stay here with my children 24/7. I wouldn't miss any of this... As I fall asleep at night I still hear Maxton's laugh, feel Cayne's kiss, hear Maccoy's Mommy, feel Mason's hug, hear Carter's I love you, hear Cavin's "not so very much", see Mallory's gorgeous smile.. They make me who I am. I am forever grateful to be their mother to get to LOVE them to the moon and back, to listen to their conversations, to feel their need and love for me. These 7 miracles are mine and I love every single minute I am so glad that I choose to be here everyday and that Clint makes it possible.. Some days are better than others but at least 7 times a day I feel how lucky I am!! I love you guys forever :)

Bad to the Bone! (thats what the shirts say)

Cavin's New Look :)

Cayne's got Freckles.. So Cute!

Maccoy April 2010


Dear Sweet Boy,

We are approaching your 1 year Mended Heart anniversary ( April 14th 2010) Maccoy ! Can you Believe it Baby? Mommy can't stop crying or praying honestly your Mommy is a mess. It's weird how all these feelings have come rushing back to me after all this time? I think I may have stored them away when we left the hospital and it took til now for them to surface. I feel such love for you not more than I do for the others just different I guess? I know sweet boy that you have went through far less than some other heart hero's but when it's your child it feels like the VERY worst thing EVER.. Yesterday I spent time looking back at the pictures from last April while holding you on my lap you would point and say baby and then look at me and smile as if you new it was you and you were proud of yourself amazed at what you have been through as if saying Mommy I did it and I am okay. Your daddy asked me last night if I thought that what you have been through has made you the baby you are? I think in some ways your heart has made you who you are because we probably treated you different (with good reason) I think not liking being held down does have something to do with all the pokes, the bp cuff's, o2 monitors, the endless echo's, that white coats make you scale mommy like a ladder, that stethoscopes coming at you make you Scream, so ya I do think your heart defect has changed you and made you who you are. You are amazing, smart, sweet, cute, cuddly, STRONG, Determined, funny, and all ours.. The next few days are going to be hard on Mommy but it's not because I am sad, the tears are from joy, pride,love and relief. Without Dr.OBrien, the staff at CMH and CMH Cardiology department you my sweetie wouldn't be in such a good place right now(more than likely you would be VERY sick) in fact we were told you wouldn't live much past your 2nd birthday without your repair. I am not quite sure how you thank someone for allowing your child to live a happy, "healthy" life?? I know this ride isn't over, we can't get off, it's one you especially will ride all your life, but right now you are in a okay place and who knows what the future holds medicine is an ever changing thing you never know what they may come up with next? No matter what Daddy and I are always right here fighting with you, for you! We LOVE you little Rock STAR!!!

xoxoxo
Mommy