WAITING ON CUPCAKES TO COOL.................

Really??!!! It is 11:00 pm and here I am up waiting for the cupcakes to cool to decorate them because Raelynn wants cupcakes to take to Mary Beth's tomorrow to celebrate her birthday. What Mom wouldn't stay up late to do that!? Anyway, while we're talking about Miss Raelynn, tonight I took her golfing with me. She did great and had a good time. When we got there she got a Gatorade to drink. When we got in the cart she asked if I knew why she got a Gatorade. I said probably because she was thirsty. She says to me, "I got a Gatorade because when you are thirsty it gives you electrolytes that keep your body from dehydrating." There are 2 big words in that sentence for an almost 5 year old and she used them correctly. It cracked me up. When we were headed home she says to me; "Mom, I like hanging out with you." Wow, I loved hearing that. I should probably record her saying that so I can play it to myself when she is 16.

Before all the fun with Raelynn, we got fantastic news on Coop. We saw Dr. Kelley today and he said he is doing great and the infection is basically over. We have antibiotics for the next 10 days but all in all he is good. This was such a relief! It is so great to have Dr. Kelley to go to for all my questions. We would be lost without him.

Tomorrow is Raelynn's 5th Birthday. I cannot believe she is 5! I will wait for tomorrow for all my sappy feelings on her and her turning 5 until tomorrow. Now back to cupcake duty!

WE ARE HOME...AGAIN.........

Well we made it home yesterday afternoon! It was great to be home. This visit seemed longer than surgery! Coop is doing great. Basically part of Coop's infection they have an ID on but part they do not. What they are telling us is that this type of infection they have not seen since the 1970's, of course, Coop never follows what one would expect. The infection is "puny" in the words of the Infectious Decease Doctor. It was not strong enough to enter his chest, thank goodness, but it also got caught under the skin and grew quickly. Of the portion that they do not have an ID on yet, 85% of that kind of infection is treatable by the medication we are currently on and easy to get rid of. However, the other 15% is not treatable by the meds we have and can sometimes be very difficult to get rid of. We will find out tomorrow which it is. Of course, as our surgeon said, considering Coop's constant curve balls, we should probably count on the 15%, hahaha! Anyway, so far, as infections go, it has been all good news. Leaving the hospital we received very little direction as to what to do to prevent further infection because Coop's was just caused by bacteria on his own skin and was probably not gotten from someone or something specific. In addition they gave me little direction as to when I can return to work and Coop to daycare other than when the open portion of the incision begins to heal and is no longer open, the chance of infection is minimal. We see Dr. Kelley tomorrow and know I will have more answers then. All in all, I just feel fortunate once again to have both my great kids sound asleep at home in their own beds.

With all the craziness of Coop's infection, there was one thing that I failed to post. Last week Coop had his last visit with our Tiny K therapist. Coop had really grown to love her visits and we are sad to see her go. However, we are happy for her and wish her the very best.

Finally, we are so thankful for all the support we receive every time something comes up with Cooper from comments, email, texts, etc. Everyone is so kind and helpful. In addition, the fact that Tom graciously gives me the time away from work to make sure my baby is well and is never short or angered by my many doctor appointments or hospital stays is amazing to me. The fact that on Friday when my family heard we were being admitted to the hospital again, Mom, Karli and Steph were all on the road back here to help out is so unbelievable to me. They made sure that they were here so I could still give my daughter a wonderful day of birthday surprises and were willing to stay as long as we needed them. I am not sure how we would juggle things without them. Thank you to Jerry and the rest of the staff at Park Lane for letting my Mom come and help us so much. Thank you to Mary Beth who took Raelynn as one of her own on Friday so we could focus on Cooper and spoiled her so much she wanted to stay with her the entire night. We are so grateful for all of you! I can never say enough thanks to the people that are in our lives for making our situation seem more like a blessing than a tragedy. I don't think I would have ever realized how precious you all are or how precious our lives are in general without Cooper. You are all so very important to us! Thank you!

COOP IS ON THE WAY TO RECOVERY...........

Cooper is doing great. The surgical team rounded this morning and they are not going to re-enter the chest to fuse the sternum. With the swelling is decreasing the sternum appears to be fine. The infection is a strep infection, but they are still trying to determine if it Group A or Group B Infection. The good news is that the infection does appear to be superficial which means they will not need to enter the chest again. Come to find out, if the infection had entered the chest it would quickly attack either the stints or the conduit system they just put in and they would have to go in, remove the infected area and redo the surgery we just had. That is scary! So we, once again, are extremely fortunate! Anyway, the news is all good and we will just continue to wait and find out the next step. Coop himself is doing great as long as the nurses and doctors stay out of his room....
when the nurses and doctors do enter....Cooper cries unbelievable. It sounds like they will let us go home tomorrow with antibiotics, then back to clinic on Tuesday and Cooper a little home bound for awhile to avoid unnecessary germs.

Raelynn had a horse show today so Daddy took her. She placed 1st with both judges. I am so proud of her!!!!

RAELYNN'S SURPRISE BIRTHDAY DAY......

Today was the day we had planned to celebrate Raelynn's birthday and I had several surprises lined up. When Coop was admitted to the hospital yesterday, we knew we couldn't let that spoil Raelynn's Surprise Birthday Day (her actual birthday is July 1st). So Terry spent the night with Coop so I could be hope with Raelynn. The day began with breakfast in bed. We made her one of Grandma's famous fruit faces.
Then I let her know this is her special birthday day (this is what we call the day we celebrate our bday with a party but not our actual birthday) and that she had surprises all day! I told her every Princess deserves surprises and the theme of her day was Princesses. Next she received her first surprise which was her princess outfit.Our next surprise took us on a shopping spree because every Princess loves to shop. Raelynn ended up with a swim suit and cover up, 2 new pairs of shoes and a beautiful purse. Next it was off to a nail salon for a manicure and pedi. This is always fun for Raelynn.
After that was the big surprise. We had 4 of her friends and she having a Princess Tea Party at the Three Sisters Inn in Baldwin. After their tea party they got to go upstairs to a suite and place dress up. It was so much fun!!! The girls loved it and I think we Mom's loved it too.


We headed home from there, packed and headed to the hospital. Raelynn was exhausted but wanted to see her brother. She had a great day and I am so thankful I was able to still give her her Special Birthday Day!

COOP IS BACK IN THE HOSPITAL...................

Well how quickly things can change. Coop's pain continued through Wednesday night and by Thursday morning I was calling the cardiologist. He really had no idea what else he could look for but agreed to see us even on his day off. So we were scheduled for an EKG and Echo this morning at 10a.m. Coop did pretty well last night only waking a few times. Terry and I had decided we would ask the cardiologist about the possibility of Coop having a dislocated rib. I had told Terry I just really hope they get us some answers. So we got to the cardiologist a little before 10 a.m. They got us right in and always weigh Coop and do a few other things before they take us to a room. We got to the room and Terry notices there is some pussing coming out of his incision. Well that puss turned into a gusher! From there things got crazy. There were dctors and nurses swarming through the room. There was so much that happened but to keep it short basically Coop had an infection and it ruptured through the top part of his incision. In addition, they found instability in his sternon where it is not healing back. So we were admitted to the hospital for treatment. The day was extremely long and some very strong crying from Coop. The day was filled with crazy things that happened and scenarios that we were given but basically Coop has an infection. They will not know until tomorrow if it is superficial and just right under the skin or if it is inside him in the chest area. If it is superficial they will treat with antibiotics but if it has entered the body cavity, they will be forced to open Coop up again. They should know which it is tomorrow. In addition there is talk about after the infection is gone having to go back into the chest to reset and fuse the sternon. So needless to say there is no queetion why our little man was in so much pain. He is actually doing much better since they drained som of the stuff out. As far as time frame, we are still very unsure but generally it is 3-4 days on antibiotics and then a day of observation and then if they have to reset the sternom we will have many additional days. I will know so much more tomorrow! I will keep you all posted. We have a very special day planned for Raelynn tomorrow as well for her birthday so there will be plenty to post about tomorrow.

YEP, IT WAS A TUESDAY..............

Things were moving right along this week. Monday morning we got back to our old routine. The kids were off to day care where they received a warm welcome back. When we arrived they had written in chalk on the sidewalk, "Welcome Back Raelynn and Cooper!" It started their day off right. Then Mary Beth's daughter, Tori, had made the kids tie dye T-shirts that were made with such love and thought it amazed me. She also made Raelynn some awesome flip flops that Raelynn has declared her new slippers. So needless to say they were happy to be back and loved having their friends around again.I too was happy to be back at work. One of our clients called just to welcome me back and how happy he was things went well with Coop. It was really nice. Several others that called or stopped in were happy that things went well also. It is great to be able to celebrate Coop's life with so many people. It was just a good day. We had swimming lessons after work and saw even more friends and then headed home. Raelynn and I decided to try to put rollers in her hair after her shower to see if we could give her curls. It was fun but the rollers didn't make it all night however what did stay in did make her hair adorably curly!
So after a great Monday, we had Tuesday. As I have mentioned before, everything happens on Tuesdays....Terry's Golf Day. It was around 3:30pm I got a call from Mary Beth. Coop had awaken during nap and was very upset and short of breath. He seemed to be in pain. I left work and went to see what was going on. When I got there he had fallen back to sleep but was shallow breathing and whimpering. I called our pediatrician and we finally decided he may be in pain but with his color good and so forth he was probably fine. So I loaded the kids up and headed back to the office to end the day. We left the office around 5:20pm and headed to get diapers. By the time we were headed back home, Coop was screaming in pain and short of breath. I called the cardiac team and they wanted us to take him to CMH ER for a chest X-ray. I called Terry and he headed home. I called Jan and had her pick up Raelynn because as you know from previous posts, I find the ER to be one of the scariest places we have ever visited and did not want Raelynn there again. We were off. Coop screamed or whimpered the whole way there. The chest X-ray came back clear and they decided he had just over done it and gave us another prescription for Oxycodine with Tylenol. Coop had calmed when they gave him the pain meds and by the time we left he walked out of the ER telling everyone good-bye. He fell asleep on the way home, it was around midnight when we got home. When we woke him up to get PJ's on and meds he was crying again and continued to scream/cry/whimper until 6 a.m. when he finally fell asleep. In addition to the inconsolable crying he spiked a fever between 101 and 105 throughout the night even though he was heavily medicated with Ibuprofen and Tylenol. So needless to say I was back on the phone this morning to the pediatrician. We spent a good part of the day at the pediatrician and the lab checking Coop out. At 5:30pm this evening they called and said they found nothing. He has no infections or anything; all the blood work and urine were perfect. He is still complaining that his chest hurts tonight. We don't show any signs of the fever though. I gave him some pain meds this evening and will see what happens tonight. I can tell you I really need a few hours of sleep. I am unbelievably tired! I am still concerned because I don't know that he should be in so much pain this far from surgery but I plan to watch him tonight and observe how things go tomorrow. We are going to slow him down a little so if he has pulled a muscle or something it can have time to heal. However, if we are still dealing with such a strong pain or fever by Friday, I will be in touch with Cardiac again. Come on Coop.....you have made it this far, let's get you healed and give Mom and Dad some rest without worry :)

SIBLING REUNION AND FATHER'S DAY...............

What a wonderful weekend! Friday we finally got to see Raelynn and it was a great reunion. Raelynn and Coop were so excited to see each other and needless to say so were Raelynn and I.
We had picked Raelynn up in Salina where Karli had attended a Cadet Academy. They had a little graduation ceremony and it was really quite neat. She got to actual do everything a police cadet does, she shot guns, drove training courses, flew a chopper and on and on. It was really outstanding and she loved every second of it. Friday night we got home pretty late and Saturday slept in. It was so wonderful to have both kids back in their own beds.

Today was exciting, of course, because of Dad's Day. Raelynn had it all planned out. She had bought a doughnut for Daddy for breakfast and her plan was to get his doughnut and OJ ready then blind fold him and bring him out to his breakfast and presents that Cooper and I had bought. Terry was a good sport and let her blind fold him. She loved it. Then Terry got his gifts. We had bought him a new pair of shoes and shorts. The best part of it all was that Coop had came shopping with me on Thursday evening and he was an awesome shopper. He actually helped pick out Terry's shorts and then we got him a pair to match. Coop loved it and was even a little excited. It was all fun. Then we went out to Aunt Bonnie's for dinner and home made ice cream tonight. Again, a great time!



So now back to normal on Monday. Coop and Raelynn will return to Mary Beth's and I to work. I know he will do just fine and I will probably have a harder time tomorrow than he does, but I am just happy that we can already be returning to "normal".

PINK EVEN AFTER A BATH??????

Last night I think Coop's heart fix finally hit me. He was able to take a bath last night for the first time since his surgery. Coop loves his bathes and he had been asking to take one since we returned home. So last night I gave him a little extra water and a little extra time to play. When it was finally time to get out, I dried him off, brushed his hair and teeth and took him to his room to get his PJ's on. I laid him on the changing table, grabbed his PJ's and as I turned back around to him, my breath was taken away. As I looked at Coop's smiling face all I could see were these incredibly bright pink lips and soft pink skin. I began to cry. In the 2 1/2 years I have spent staring at his adorable face I have never seen pink lips and skin, especially after a bath. His lips are always blue and skin always dusky. I did not even realize how blueish he always has been until I saw him in that moment. Coop's smile disappeared and he said, "Why you cry Mommy?" I began to laugh and told him I was crying because I loved him sooooo much. He looked very confused but I quickly wiped away the tears and continued the smiling and laughing and it did not take long for his smile to return too. If I could have held that moment just a little longer, I would have. I felt for the first time like we had Cooper and there was not this tugging feeling of wondering "but for how long?". As I look at him this morning, watching cartoons and seeing him glance at me with a smile wondering why I am staring at him, I know, finally, Cooper is ours and the next minutes, days, years will be cherished more than he will ever understand.

COOP SAILS THROUGH POST OP EXAM...............

We just got back from CMH and Cooper looks fantastic! (Like we didn't all know that already) His echo and chest x-ray looked great. They, as are we, thrilled with his recovery. He even told Staci the names of his horse and Tissy's! Staci is this wonderful cardiac nurse that asked Coop over and over again the name of his horse and received nothing back other than a death stare. So she was delighted to finally get an answer. I had been pretty sure he would flip out once we got there but we talked about it on the way over and he did great. He only cried whey they removed the sterile strips that covered his chest. His incision looks incredible. It is very clean, straight and thin. In our opinion, Coop's chest looks perfect! I am so proud of our big boy and so thankful of the outcome!

Yesterday Coop called Raelynn and says, "Tissy, come home NOW and pay with me!" Raelynn responded, "I will see you in 2 days Boo." Coop confirms, "2 days". Raelynn says, "yes, two days and then we can play." Coop says in a sad meek voice, "O'Tay." So finally, looking ahead to tomorrow, he will see his Tissy. Then we can get back to our "normal" life. I can't wait!

COOP IS COMING AROUND......................

The past two days have flown by. Cooper is finally getting back to his old self and then some. I had expressed earlier that he was very shy and withdrawn around people and I was hoping he would get back to himself soon. Well yesterday Aunt Steph and Cody came to visit and then later in the afternoon our friends Chaunsea and Kenzie stopped by. I think this all got Cooper on his way. Of course he loves his Aunt Steph and Cody very much and there was no need for warming up to them. Not only did he love seeing them but he also loved seeing their new addition.....meet Gus.


So our day went by quickly and it was great to have company. Then Chaunsea and Kenzie stopped by. Coop could not have been more thrilled to see Kenzie. I think it gave him a little "Tissy" fix.

Today we started the day out with a visit from our friends Gage and Riley who brought Coop over his first train. Let me tell you, that train occupied a huge part of our day! After that we went over to visit Mary Beth and all Coop's friends. I was so hopeful that he would just jump back in and have a good time. It took him a few minutes and then just as I had hoped he was running around having a great time. It was such a relief. He was not bashful, withdrawn or sensitive. It was a great visit and he as we left he said, "I see my friends, I be back soon." I told him he would be back soon and he said, "Tissy come too?" Yes I replied and he gave me a BIG smile. Today when he talked to Raelynn he said, "You come home now and pay with me!" He misses her so very much, just 2 more days!
Later this afternoon, Jan, Jana and Emma came by to visit. Again Coop was ready to play. It is great to have the company and it is really helping Coop forget everything that happened to him last week and get him back to his old self again.

Tomorrow we head back to CMH for our follow up visit. We have a few little things to figure out but expect a good check up. However, I assume Coop will not be a big fan of going there or seeing his surgical team. This could be interesting! :)

A SISTER................

This is a completely random post but I was getting some paperwork that had stacked up while we were gone organized. There were some cards we had received that I had set aside for the kids scrapbooks. One of the cards was for Raelynn from some friends who never forget about her when we are going through things with Cooper. When we received it and I read it to Raelynn it made me cry and today when I read it again, again it made me cry. Our friend had inserted two quotes that are so perfectly wonderful and perfectly Raelynn.

"In the cookies of life, sisters are the chocolate chips!"

"A sister is a forever friend"


If you could ever see Cooper and Raelynn playing just the two of them when they think no one is watching it is magical. Watching Cooper this week without her just makes me realize how much she means to him and every time Raelynn calls she asks with such enthusiasm to talk to Boo. I assume it will not always be sweet and loving, but if the two of them can always hold on to the fact that they are the best friends they will ever have and that there is no one in the world you can relate to like your brother or sister, I know they will always find their forever friend!

(Thanks Sarah)

OUR FIRST DAY BACK HOME.................

Today was our first full day back home. Coop is doing great medically. He is struggling a little emotionally though. We visited a few people this morning and he is shying away from everyone. He is also overly emotionally about this. If I tell him no or insist on something he does not want to do, he cries. It is not a fake whiny cry but a real heartbreaking cry. The discharge paperwork we received described his behaviour exactly and said this was exactly what we could expect at his age. It is really sad though and I hope he gets past it soon. He is still hurting a lot and I think I am getting a better handle on that. I am also trying to teach him to verbalize his pain better so I know. Today he told me his "heart" hurt, it was a bad ouchy! He also does not like to look at himself. As soon as you remove his shirt he insist I put it back on. After I dressed him this morning he asked for socks. I asked him if he was sure he wanted socks and he told me he didn't want to see his ouchies. (He had IV's in both his feet) Anyway, he really is doing fantastic and I know it will just take time for him to feel reassured. Again, I am just happy to be home working on these small things.

Cooper also misses "Tissy" very very much and so do I. It is way too quiet around here. Cooper asked about her several times today and talked to her on the phone 3 times. They love each other so much and I love them both more than they will ever know. Raelynn is having a great time at Grandma's though and it is wonderful to hear her cheerful voice! While she is gone, I will focus on getting Coop back on track and anxiously await her return on Friday!

HOME HERE WE COME...................

Well the drainage tubes are out, x-ray looks great and we are headed home!!! We are so incredibly blessed. I am the luckiest Mommy in the entire world!!! I can't help but shed a few tears. This all turned out so much better than I could have ever expected!!!

APPROACHING HOME...............

Our morning started bright and early with chest X-ray at 5 a.m. Cooper was pretty wobbly on his feet so we took him in the wagon. We got back to the room and he slept while I got a shower. They I gave him a sponge bath, spiked his hair, brushed his teeth and put some shorts on him. He was pretty tired and didn't look like he was up for much. The nurse came in and gave him some meds by IV and I gave 4 by mouth. Within minutes he returned all the oral meds. This is nothing we aren't used to with Coop but in the throw up was blood. I was very concerned. I hollered for the nurses and they came in and helped me clean up and then called the blue team (the team of doctors looking over Cooper). Coop instantly seemed to feel much better and be more alert. After a little while one of our favorite cardiac nurses came in to look at Coop. She assured me there was nothing to worry about regarding the blood. Apparently during surgery their esophagus is very irritated and often there is blood down there. The blood was old blood and not very much in their opinion so it was of no concern. I was very relieved. She let me know that there was still some drainage in the tubes but they would get them out tomorrow hopefully and then we could go home late tomorrow or Monday. I could hardly believe it!!! Let's see.....complicated 12 hour open heart surgery on Tuesday and home the following Monday......less than 1 week!!! They say pictures say a thousand words....

Cooper Tuesday June 8th
Cooper Saturday June 12th
If that doesn't make you believe there is a God, nothing will!

So after the doctors rounded the plan was for my Mom to come over while Karli took her ACT's and she would sit with Cooper while I went home and packed Raelynn for a week at Grandma's house. Considering we may be out of the hospital Monday the need for Raelynn to go back with Mom was not really necessary. However, Raelynn had her heart set on spending a week with Grandma and as much as I didn't want her to go, I couldn't take that away from her either. So I went home and packed her up. Mom and Cooper played all morning and by the time we got back Coop was ready to head to the play room again. After some time there Mom, Karli, Chandler and Raelynn headed back. I cannot tell my Mom and Karli thank you enough. They made this past week so much easier. I often wonder what we would do without them. Another reason we are the luckiest family in the world. Saying goodbye to Raelynn was as hard as it always is. I miss her before she even walks out the door! I won't see her again until next Friday and I am already counting down the days. After they left Cooper became a mad man. He was running all over the room and being silly as ever. I couldn't believe how much energy he had. Then he turned to run across the room and tripped on Tery's foot. He went sliding chest first across the floor. You can only imagine how horrified we were. He got up, glasses sitting cricked on his face, whined a little about that, and smiled and took off again! We finally got him settled down and thought he might rest a minute, but then we had company. Our friends Tim and Amy came to visit. Coop loves Tim and they played cars and put puzzles together that they had brought him. He had a great time and Terry and I enjoyed the company. They left about 6 pm and we took Coop down to the cafeteria to eat with us. He enjoyed the wagon ride and hasn't stopped since then. When I finish this post I am hoping to figure out how to calm him down for bed :)

Well cross your fingers and maybe will be home in a day or two. I realize we will still have some down time at home before he is ready to return to daycare but a couple weeks is a whole lot better than a month! Our little man is one big fighter!!!

HMMMM.....WHY AGAIN ARE WE STILL HERE.........

What a day! We started the morning bright and early. Cooper slept really well last night and Terry and I finally got a little sleep. The doctors rounded early and put in orders for us to move to the 4th but there wasn't a bed ready until after lunch. So we spent most of the morning in the PICU. Cooper started off a little grumpy....

But once they cut his drainage tubes and switched them to bulbs and pulled the central line in his shoulder/neck area I was able to hold him like he wanted. Other than first picking him up and forgetting about the fact that you absolutely cannot pick them up under their arms, he loved this and we finally got some smiles.

After we found that position and did play a little, we did some serious snuggling. We held him all morning and he loved it. Finally around 2 p.m. or so we were moved to the 4th floor or what I call the Hyatt with a built in bed and bathroom. Life is sooooo much better now. Mom, Karli, Chandler and Raelynn came soon after we got to the floor and that is when the real fun started. Coop started by actually sitting up and playing cars with Sissy.

The RT had told us before we left the PICU that if we could get him to stand up a couple times today that would be great. Well once Coop learned there was a play room down the hall from our new room, walking did not seem to be a problem.



The kids played all afternoon and I figured when Mom and the girls got ready to leave, Coop would be exhausted. So we told them goodbye about 6:30 or so.

After that Coop and I decided it was time for him to open the present Aunt Steph had brought him the day of his surgery. So I sat Coop up in bed with the present and let him open it. He was so excited.....He ripped through the tissue paper and then yelled GUN! What????? Yep my sister had broke all my no gun rules and more and bought him this Nerf dart gun. Cooper was way excited but me not so much. :) Never mind the 6+ noted age on the gun. So we called Aunt Steph and let her know Coop's excitement and my disapproval. Cooper was so excited it was all he could talk about. So I let him shoot one round of darts at the wall and then insisted it be put away for now. Just what I need, Coop shooting all the nurses with darts! And let me tell you he would do it, he is not a big fan of anyone around here! So thank you Aunt Steph or should I say Cody, for such a wonderful gift :)

The rest of our evening was spent reading and coloring and playing and eating. They were worried because his sodium levels were low but with the amount of Cheetos he ate tonight, that should not be a problem tomorrow when labs are drawn.

By 9 pm I insisted that he get some sleep and he said, "O'Tay!" He went to sleep and now lies there resting getting ready for another big day.

So again an unbelievably good day. I am hoping they will remove his drainage tubes tomorrow and then really I have no idea what is keeping us here. He is still experiencing some pain but they are staying on top of that. They are also not pleased with his O2 level but I am not convinced it is a problem. Prior to surgery they wanted Cooper to just stay above 75 and now they want him above 92. He is huvering around 89 so they are keeping oxygen on which he dislikes greatly. We will just have to see what they decide on that. Otherwise, he is almost back to his old self and I cannot tell you how good that feels. I was so worried about this surgery and more often than not wondered how I was going to deal with things if we lost him. It was on my mind, and Terry's constantly. Now, just 4 days after surgery, we have our little boy back just a little pinker than before. I don't know how one even grasps that. We are more than overjoyed! We are so thankful! I still have 2 of the most wonderful kids in the entire world and my life is still complete. There is no way to put into words how I feel about that. As I look at Cooper sound asleep as though there was nothing wrong and nothing unusual had happened over the past week, I thank God for listening to all of our prayers!

UNBELIEVABLE PROGRESS........

Today went well again! I am loosing a little track of time so if I repeat some info please forgive me. Cooper is now off all his drips which are the meds administered through IV. He is still receiving some electrolytes and such from IV because of course he is not eating but there is no new news there. He does have his oxygen cannula back in but at a very low rate and that is no big deal. The pulled his arterial line in his wrist which is nice because it gives him more mobility. The pace maker has remained off all day and everyone seems pleased with his rate although it is relatively slow. He looks fantastic! He is nice and pink and his perfusion is great. They took his drainage tubes to bulbs which does not probably mean much to all of you but it is one step closer to having them removed. They have taken him off the morphine and switched to ibuprofen and oxycodone. This is a longer lasting pain reliever and does not have the sedative factor that morphine does. Today we were able to hold him which was wonderful. Karli and I held him all afternoon and now he wants to be held all the time but you can't blame him. He did start to interact a little more today and watched a movie and asked me to read him a book which eased my concerns of brain damage a little. He has eaten ice chips and drank some water and apple juice. All in all he is doing just great. The floor doctor said his recovery has been simply amazing and I agree.

Tonight has been a little more difficult. He is verbalizing a lot more pain. It is hard to calm him and he wants to be held like you hold a kid his age, chest to chest, real close but we can only hold him like a baby cradled in our arms. I try to tell him that I want to hold him close too but it will hurt him more.

We were told today that we would be going to the 4th floor tomorrow which is crazy. The 4th floor is where you go right before you go home. I asked if they were sure we were ready for that and she said he looks great and is ready. I said, "no, are you sure WE are ready for that?" They just laughed and assured be that I could handle it considering I spent most of today caring for him anyway. I suppose they are right but in the past we have been at Day 20 before the 4th floor has even been discussed and here we are at Day 3! He is so strong this time!

Terry and I are doing fine. It has been a little rougher this time because we have not gotten a room down the hall which means we have both been staying in the room sleeping in chairs that are not meant to be slept in and no shower, yuck! Therefore, if we are moved to the 4th floor which has a bed and a bathroom we will be ecstatic!!! I am so tired at night and I guess it is just because of the long days and nights. I am hoping Coop sleeps a little more tonight but we will just have to see. I don't mind seeing his beautiful eyes even at 2 a.m.

STARTING THE MORNING OUT RIGHT...........

The night went well. Cooper did great but was awake often. He is requiring morphine about every 2 hours for pain right now. He is not telling us he hurts verbally but his breathing and heart rate are indicating it. The cardiac team just rounded and they have turned the pacemaker off for now to see how he does. He has some PVC (premature ventricle contraction) but other than that seems to be doing well. His heart rate is a little lower than it was with the pacemaker but as long as his perfusion (color) stays good, they will leave it off. They will be taking the next step in removing his drainage tubes by changing them to bulbs. Basically they just cut down these long drainage tubes and put a "bulb" on the end to collect the blood. After this step they remove them but it could still be a day or so before they are out. So again great progress for Coop!!!

I did not mention one of my concerns yesterday because I was really trying to barry it in my mind. Cooper is not responding to directions, i.e. "Cooper look at Mommy", "Cooper do you want to watch cartoons", etc. Every time he goes under his chances of brain damage increase. Late last night he seemed fully awake but yet would hardly make eye contact with me. I could not help but be very concerned. The nurse reminded me that it has been a very difficult couple days for him but also validated my concern. I couldn't help but cry. Can you imagine if the Cooper we take home isn't the same funny, sweet, energetic Cooper that we brought? I just can't! About 4 a.m. this morning when he awoke and I got up to hold his hand he called out to me about 3 times. This is a very good sign. I am still cautious though and really hope that he will start to interact with us so I know he is still the same little boy.

This time we are so much busier than in the past. We used to sit days with nothing to do but Cooper needs us so much this time. There is hardly a minute that we are not holding his hand or trying to talk to him. It is great to be needed! The nurse said this visit would be much more exhausting for us because he would need us much more than he did in the past surgeries, but I disagree. It is exhausting to sit and have no idea how you can help and watch him just lay there. I would much rather chase him around, hold his hand or anything else.

Well we are moving rooms so I have to go. We are moving to room 17 which is further away from the nurses station which is good news, it means we are not as critical anymore.....YEA!

THE VENTILATOR IS OFF................

Around 10:30pm Cooper was removed from the ventilator and the breathing tube and NG tube were removed. He is now laying sound asleep and doing great. So today they removed his catheter, breathing tube, NG tube, NIRS. He still has several lines in, drainage tubes and the pacemaker but boy has he made progress. Please let me remind everyone that it was only just a little over 24 hours ago that he was in surgery. Everyone here is shocked at how long he was in surgery and ecstatic about how he is doing. I can't wait to hold him but just being able to snuggle up against his face and kiss him was amazing! Here are a few pics of his visitors today.




This is Coop before and after the ventilator!

A LONG AND TEDIOUS DAY.........

I had forgotten how slow and tedious this process is. Normally I have been here for 10 days or so and am used to slow but they didn't warm me up this time and I am having to really concentrate on being patient. The beginning was really slow but we have our favorite RT now, Teresa. She is who brought Coop off the ventilator after he was on ECMO. She is very good and very aggressive. There are so many things they are trying to balance out right now that it would take me all day to give you all the details so I will just give you a few. He is off all the sleepy meds completely. They are giving him Morphine, Versed and then heart meds. The morphine of course is for pain and the versed is the loopy medicine they give him before he went into surgery. They nicknamed versed the amnesia drug because they will not remember anything while they are on it which is fantastic. The versed also keeps him calm. As for the heart meds I have not had time to learn them all yet but will fill you in when I do. Cooper is not happy about the breathing tube to put it mildly. He is waking up often and angry so we are basically spending all our time by his bed calming him down and keeping him from pulling out the ventilator and his drainage tubes and pace maker wires. He keeps mouthing "Momma" and it is very sad. We just continue to hold his hands and rub his soft hair. We are finally making some progress this afternoon but do not expect too much today. I know there are so many more things I should let you know but it has taken me an hour to just type this much with Coop in and out all the time so please bare with me and I will post more soon. All you really need to know and all that really matters is Coop is still here with us and I can touch him and kiss him and feel his soft pink skin and there is really nothing else that matters right now!

GOOD MORNING COOPER................

Cooper is ready to wake up! They have been giving him extra meds all night to keep him under. He is ready to go. Of course the first thing he does is reach for the breathing tube so they have put some soft restraints on him. It sounds bad but it really isn't, yet. The doctors have rounded and the orders are in to start weaning him from the sleepy meds and wake him up. If all goes well they will remove him from the ventilator this afternoon. We are now in territory we have never been and I am not sure what to expect. In the past it has been days before we are at this stage. I anticipate Cooper being a little feisty about all the tubes and such but we will see how it goes. It is all just wonderful news. He is still on the pacemaker and they will see what happens as they wake him up. They are hopeful that this will improve. From what I understand, the atrium (top of the heart)is beating twice but only one of the signals is going through to the ventricle (bottom part of the heart) to tell it to beat. The VSD closure they did runs right along the electrical line between the atrium and ventricle. It can sometimes be damaged during surgery but they do not think this is what happened because the one beat is getting through. It can also just be irritated and that is what they are thinking. Well this post has taken me forever because he keeps waking up. I need to go now to help keep him calm. This is kind of hard because his face tells us he is crying and coughing but there is no sound and they have him restrained. It will be fine though, just one more step to recovery!

WE ARE FINALLY BACK WITH OUR LITTLE BOY.....

We finally got to see Cooper about 7:50 pm. It was a very long day but thanks to my Mom and sisters we are still smiling! Thank you Mom, Karli and Steph. You guys are incredible, we love you very much and am very thankful for you!!! Cooper looks amazing. His chest is closed and his SAT level is 97! Remember before they were just happy to have him above 75. His color is great too. Where he was blue before he is now the softest pink. He is beautiful! He is sleeping peacefully and we are having to stay quiet because every time we talk to him or hold his hand he moves a little and they want him to stay still tonight. He just wants to wake up and play with us. I think they will keep him asleep into the afternoon tomorrow and then start waking him up. We have seen many of the same nurses and RT. It is great to see such friendly faces and laugh about how much bigger Coop is and how much better he is doing this time. My Mom, Karli and Steph were able to visit him this evening and even Raelynn got in for a visit. She was so inquisitive and the nurses were taken back by her line of questioning. She remembered a lot from last time so she knew what to ask.

Terry and I are soooo tired. we started today at 3:30 a.m. and have gone straight through. I haven't eaten anything but a few crackers and junk here and there. I am getting all cozy in my chair next to Coop and Terry is about to head down to his little room to catch some sleep. Tomorrow will be another day and I am so happy it is a day we are looking forward too.

Thank you all again! We are so overwhelmed with your love and support!

MEETING WITH THE DOCTORS.............

Things went great! We just finished with Dr. O'Brien and Dr. Kaine which I have to tell you are amazing. The surgery went really well and they are very pleased. The excessive bleeding was caused by the severing of these little capillaries that Cooper's body created to get more blood to his lungs since his normal anatomy wasn't cutting it. Now that they have the heart doing it's job he did not need all these little capillaries and so they severed them. The pace maker that is temporarily attached is just to help out a little and keep the rest of his body happy while he recovers and they do not doubt that it will be removed. They will keep Cooper asleep tonight and maybe tomorrow and then will start waking him up. Everything looks really good and the valve could last Coop for 3, 5 10 years, time will tell.

Thank you to Dr. O'Brien and Dr. Kaine. You have no idea what you mean to us. How can you ever tell the people that give your son life, thank you?!!!!

LITTLE BY LITTLE......

Sorry for the back to back posts but things are progressing. There is still some bleeding but they have the drainage tubes in place and giving him much needed fluid and platelets. They have removed the cannula's for the bypass machine and he is completely off that which is good. The kind of not so great thing is they have his atrium hooked up to a pace maker right now. They said he has an underlying rhythm it is just skipping some beats here and there. They don't think it will have to remain there but did leave the temporary wires there and we'll see how he does over the next few days. I keep asking if everything thing looks good and they just keep saying, he did well but it was a big day and very stressful to him and his heart so I guess until I get in the room with him and can hear all of their talking I won't know for sure where things stand. Dr. O'Brien, the surgeon, should be out within the hour to talk with us and again we will get a better feel about things. I just can't wait to see him right now. I want to see him and hold him and touch him, then I will know. I am still holding my breath........

OK, HOLD YOUR BREATH..............

The repair is complete. They are warming the room back up and slowly removing him from he bypass machine. He has some excess bleeding and they are working on that right now. They have moved us to the NICU waiting room but we still have a couple hours to go. Stacy will be out in a little while to let us know how things are going. This is a huge step as this is where things turned bad last go around. Keep the prayers coming!

IT CONTINUES.................

The VSD is closed and they are dropping the temperature in the room so they can continue on with the conduit. I may have already posted this but they drop the operating room down to the low 40's to slow the organ functions while working on the heart. My poor little boy is freezing!!!!

I know I keep thanking you all but you just can't imagine what all your support means to us. Not to mention it sure does make the time go by faster having so many wonderful things to read :) You are all great.

Thanks to updates from Mary Beth, Raelynn is having a good time at her house and doing well. I miss her already but am so thankful she is being loved. Raelynn~ We love you and Coop is doing great. This morning while he was on his silly meds he called me Tissy! I told him, "no I'm Mommy" and he said, "where Tissy?" I told him you would see him soon. He loves you!

WELL ON THEIR WAY.............

Stacy was just out. They did decide to put a stint in both the right and left artery and they are done with that. The cardiac team is done with their portion of the procedure is complete Coop should be on bypass in the next 10 minutes for the surgical team to proceed with the conduit and closer of the VSD.

Thank you all again, you have been wonderful!!!

ANGIOPLAST COMPLETE.......................

Things are going well. They have the ballooon angioplast in the right pulmonary artery and have begun placing the stint in the left. They may go back in and place a stint in the right also but just have not decided yet. I guess they have all day to decide so why hurry, heeheehee!

PICTURES.....

We are finally getting emails so here are some pics. Prior to Coop being taken into surgery they give him "happy" meds. They make him soooo funny. We have a video but can't get it transfered over but will keep working on it. Enjoy the pics though!