RAELYNN IS GONE!!!!

It has been 1 hour and 37 minutes since Raelynn left with Sherri to go back to Scott City to spend the week with Grandma. I miss her so much already!!! People always assume the reason not to have kids is because they take away your freedom, or the expense, or so many other reasons but I am telling you.....this is the reason.....having to let them go sometimes. I know this is best for Raelynn and for us because next week will be a very long and hard week with Cooper's surgery but I cannot even begin to describe how sad I feel. I have only let Raelynn spend the night with Sherri twice before this week and that was for one little night, I have no idea how I am going to make it until Friday!!! I sent a letter with a little surprise inside for Raelynn for every morning she is gone so she is reminded how much I love and miss her. (Thanks for the idea Jill) I think she will really like it. She helped me pack last night and this morning we snuggles and played before she left. She was very excited for her trip and that helped. I hope she does not get home sick. I just want her to have a great time!!!

So Thursday they told us we could finally go home for a few days, but after waiting all day at around 5:15 pm we found out because of an insurance technicality and miscommunication amongst their staff we could not leave. We had to be taught by a pharmacist how to give Cooper his injections even though I had already given them to him 3 times. The insurance would not pay for the injections unless I was taught by the pharmacists. So there we were stuck until Friday. The hospital staff was very apologetic and of course Terry and I were very disappointed but there was nothing that could be done and #%$! happens. Friday they were there by 8:30 am to teach us and then we had to wait until about 10 am for the medicine to actually get there. Finally we were ready to leave with oxygen, SAT monitor and injections in hand. I stopped by Sherri's and picked up Raelynn. It was sooooo great to all be home together again. We had a busy but good night. Cooper has injections of Lovenox at 4pm and 4am every day. This is a blood thinner that only stays in his system approximately 12 hours so we can take him off of it Sunday night and he will be ready for his surgery Tuesday. He also has an oxygen tank and a SAT monitor so we can make sure his O2 level stays up. So far everything has went fine. I have several things to do today and tomorrow to get ready for another long stay at the hospital. We take him in Monday morning for pre op and then we will be back in first thing Tuesday morning for his major reconstructive surgery. We all have high hopes that they will be able to do everything that is needed. However, if they get in there and find that he is still too small then they will just replace the shunt and we will be right back here doing all of this again in about 6 months. The surgery is very complicated and will last up to 5 hours. His recovery can take anywhere from 7 to 30 days. It is all very scary but Cooper is a tough little man and I know will do just fine. However I appreciate all the prayers we can get too.

Congratulations Steph!!! I hope you have a fantastic day and again I am so very sorry I am not there! Not being there is so hard for me! I love you very very much and am so proud of who you are! I cannot tell you enough how much I love you and know you will continue to be an amazing sister I truly admire. You have grown up to be such a beautiful person both inside and out!!! I love you and congratulations again!!!

By the way, for all you who didn't like my last blog layout I have changed it to Pooh for Raelynn why she is gone. I will change it to something boring and easy to read when she gets back :)

HOSPITAL TIME

Finally I have made it to a computer. As most of you know we came in for Cooper's cardiac catheter on Monday. The procedure went well and they did find that Cooper had blockage in the shunt as we suspected. This meant that surgery would be in the next month or so. After we viewed the film with the cardiologist we went to the waiting room to wait for Coop. This is usually about a 30 minute wait but we waited and waited and waited. Finally we were able to see him. His O2 level was not staying up where it should so he was still on Oxygen. We expected to spend the night and then Tuesday morning be out by noon. Unfortunately Tuesday came about and things did not go as planned. Coop's O2 level was dropping dangerously low into the 20's and 30's. They had him on 2 different means of Oxygen and still every time he became the least bit active or fussy the O2 level plummeted. We saw the cardiologist often throughout Tuesday along with several others. We were informed Tuesday that we would not be returning home and they would schedule surgery for early next week. They had to wait on surgery because Cooper had been on aspirin and they have to be off he aspirin a minimum of 6 days before it is safe for the surgery. Anyway several scary things happened Tuesday from Cooper turning purple at times to the nurses rushing in because his levels dropped so much and he and I were just playing on the bed. It was very stressful. The crazy thing of it all is that Coop does not seemed bothered by any of this and that the doctors cannot explain. As low as his O2 was dropping he should be irritable or lifeless and lethargic but some of the time they were dropping dangerously low he was giggling and playing with me. We made it through Tuesday and then Tuesday night things began to improve and today he has been great. Our cardiologist was in and said Cooper has always done things his own way and on his on time so he did not think we should expect anything different this time. He said he has no explanation for his SATS but wanted to continue to monitor him today and tonight and then would talk to us in the morning. He said we would take things one day at a time. So here we are waiting for the next update.

How are we all doing? Cooper is great. He is getting all of Mom's attention and there is a lot of it because Mom has nothing else to do and is bored out of her mind. He is eating well and continuing to gain weight. Raelynn is being a trooper and is precious as ever. She is now at Aunt Sherri's where she will stay until Saturday when they will travel to Scott City and then she will stay with Grandma until Thursday or so of next week when they all come down. The things she has said and done that have made our hearts laugh or melt are numerous. She is truly a wonderful child and loves her brother very much and Mommy is missing her sooooooo much! Lisa helped out tremendously the last few days and we are all very thankful for her. Terry is getting very tired and finding out how crazy it is to try to make sure everyone is where they need to be on time and to run errands and work all at the same time. He comes up to the hospital in the evening after work and after picking up Raelynn and then heads home with Raelynn to get her to bed just in time to start the day all over again. He is basically running everywhere but I greatly appreciate the few hours of conversation and company he has given us in the evenings. Me, well I am much better today. Yesterday was rough. Not only the many emotions of dealing with Cooper but to find out that I was going to miss Steph's High School Graduation this weekend was very hard for me. It was something I was looking forward to so much and it will only happen once and I am going to miss it. I love her so much and feel horrible that I will not be there for her. It has taken a lot for me to get past that and as soon as I do I feel horrible for once again putting Tom and Jill in overload at work. This time I don't have a computer to even help out. I cannot express how fortunate I feel to have Tom who is completely supportive and tries to make sure I do not worry about things there, although I always do. And then there is Jill who always has encouraging words that sometimes I need so much. She also gives me the real scoop at work even when Tom tells her not to, hahaha! Anyway thank you guys and I will get back as soon as I can. Today Aunt Bonnie came to visit us and I don't think I stopped talking the whole time she was here. I am sure I exhausted her but I have not had anyone to talk to in 3 days so I had a lot to say :) Well I could go on and on about how I feel about being stuck in this one little room with nothing to do and no one to talk to but I have to go because Terry wants to go home so I must get back :) The important this is Cooper is doing better, surgery is scheduled for Tuesday and I have not poked my eyeballs out yet!!! I will give more info on the surgery next time I am able to sneak onto the computer. Hope everyone is well and we greatly thank you all for your prayers!!!

UPDATE....NOTHING HAPPENED!

Well today was our scheduled cardiac catheter. We arrived at the hospital a little before 11am. The morning had gone surprisingly well. I expected Cooper to be very difficult since we were not able to feed him after 7am however he was really good. We spent about 2 1/2 hours of "prep" work for his surgery. They took all of Cooper's vitals and several nurses came to check him out. Finally, Dr. Kaine came in and said we were going to have to reschedule to Monday because the table was broke. Apparently, there is a special table needed for this procedure and after this morning the motor went out. Poor little Coop, starved for nothing. So now we are back on the waiting block for Monday. His SATS level had dropped to the low 70's which was even lower than it was just a week ago. There were several comments made also about his less than perfect color. That left us knowing surgery is right around the corner. We will head back up there on Monday and I am sure have many more answers by Tuesday.....I hope.

Last night when I put Raelynn to bed I told her that we would be taking Cooper to the hospital today and that Mommy and Cooper would not be home until tomorrow sometime. The sweet little things eye's teared right up and she asked if Baby Cooper was going to be alright. She is so sweet and knows so much more than we give her credit for. She was also very concerned that Daddy would not know what to do to take care of her overnight. It was hilarious because Terry is actually a very active Father so the fact that she does not think he knows how to care for her just makes me smile. Anyway, once she realized that she could tell Daddy what needed to be done, i.e. bath, bedtime snack, story etc, she was fine with it. When things got mixed up today, she was very concerned and told me I would have to go over the schedule with her again on Monday. The kid cracks me up. She acts more like a grown up every day!!!

So everything has been postponed and we will surely have more information by Tuesday :) !

CLOSER T0 SURGERY TIME

We found out today that Cooper's next procedure will be this Thursday. This will be his cardiac catheter where they will go in with a small little camera and look at his heart from the inside. After this they will give us a better idea when his next open heart surgery will be. This will be an overnight procedure but is suppose to be a very simple and routine procedure. I know this is what we have been preparing for but it always seems scarier and more difficult than I had thought. Cooper's color has not been the best in the past week or so and it is a constant reminder of what is coming. Anyway, I know he will be fine and this is just the next step in repairing his heart. Sunday in church our pastor said something that made me rethink our situation. I have often thought why we had been given this challenge but I don't think we were given "a challenge". I think we were given Cooper and Cooper was given us because we needed each other. God knew we had the love and ability to take good care of him and he also knew we needed his unbelievable smile to complete our family. To watch he and Raelynn together is just so wonderful! They truly could entertain us for hours. I just think things have really been put into perspective for me. I want to work harder at everything I do just so I can give both Cooper and Raelynn a Mommy they can be so proud of. So everyday when I wake up and I am tired and I would rather just lay in bed I remind myself that I have so much to accomplish for them and it really helps me to start my day with a smile!

YOU ARE NOT GOING TO BELIEVE THIS......

There has been so much crazy stuff happen in the last week I do not even know where to begin. Let's see....ok, last Friday night my Mom, Steph and Karli headed down to see us after the girls finished their softball games. They were coming down to participate in the March for Babies and see Cassidy and Chandler's church program. So they were rolling into town around 3am on Saturday morning. As they were approaching the round-a-bout at our street the pickup in front of them ran smack onto the round-a-bout. They stopped and asked the driver if he was ok. Steph thought he was drunk because he could hardly walk or talk. They made sure the guy was not seriously hurt and then continued up our street. They got to our house and all rushed in to call 911 about this accident. The called 911 and filled Terry and I in. They were inside maybe 5 to 6 minutes. Mom headed back out to unload the Tahoe and the Tahoe was gone. Yes I said gone. I grabbed the phone once again and called 911. We spent the next few hours giving the police all the information we had. Now having your vehicle stolen sucks, but the amount of things they had in the Tahoe were more valuable than the Tahoe itself. The girls had packed quickly so they had packed more things then they possible could need. They had borrowed a laptop so Steph could work on her papers. They had brought down a half of a cow for Tom and Jan. Mom had borrowed a foot detoxing machine from a lady for Sherri and I to try. The list goes on and on. Not to mention the Basketball and T-shirt Karli had gotten signed by the KU Championship Team Seniors. She was crushed!!!! It really was unbelievable. I had to be at the park to help set up for the March for Babies Walk at 5:30am so Karli and I left and headed there. Saturday was really a blur because we had so much going on. After the walk we went to Chandler's soccer game and then Cassidy and Chandler's dinner theater performance which was really good. But by the time the day was over, Mom and the girls were exhausted as they had been up for over 36 hours straight. Sunday we headed out just to get them the basics; toothbrushes, underwear, makeup, hair stuff, etc. You would be amazed how much money you can spend on just that. Thank goodness they have good insurance, hahaha! Joking aside though I was happy that I could help them a little through all of this. It is not everyday you get to really help your parents and this time I think I was able to do that. Monday morning they rented a car and finally headed home. Once they got home they spent the rest of this week trying to close bank accounts, open new accounts, fill out insurance paperwork, get driver's licenses, and who knows what else. It is truly amazing the amount of chaos this has caused. Although we do not know much about the police investigation we do know that there were more than just one person involved, the pickup that was wrecked on the round-a-bout was also stolen and we are all just very happy that no one was hurt. Their are a million scenarios that could have ended much worse.





So we are finally getting things back to normal.....sort of. This morning I headed to take Cooper in for a simple weight check. We are starting to adjust his feedings and so it is critical that we monitor his weight gain. His weight looked great. He is up to 11lbs 7oz. After the doctor and I visited about the adjustments we are making to his feedings I let them know that we are starting to see his hands and feet turn purple on occasion. We had discussed this with them previously but it did not seem to be a big issue however it is beginning to happen more often and for longer periods of time. So they decide to take his SATS. Remember this number is not do drop below 80. Well it was 60. With this and the color change they were on the phone to our cardiologist. I was a little nervous because we know we are approaching the time for our next surgery but I always keep hoping that we will postpone it until Coop gets much bigger. So they sent me back to work and said they would call after talking to the cardiologist. Dr Kelley did feel we would probably be looking a surgery sometime in the near future. So I am a little disappointed and upset but it is what it is. I get back to work and not long after getting there I get a call from Dr. Kelley and our cardiologist wants to see us just as soon as we can get things together and get over there. Now I am a little worried because we had a scheduled appointment for next Wednesday and Dr. Kelley had thought they would be ok with waiting until then so I felt like this was bad news. I had a 10am appointment with a client so after I had finished that I called Terry to see if he was about ready. He was going to be another 45 minutes or so. I was a little anxious but sat down to finish up a few more things since I would be waiting for him anyway. My cell phone rings and it is Lisa. Her voice sounded concerned so I immediately asked what was wrong assuming something was going on with Cooper. Instead she tells me Raelynn has cut her head open running into the corner of the wall. She didn't know if it would need stitches or not. I was on my way. I got to Lisa's and Raelynn was laying on the couch with Lisa next to her holding a cold towel on her head. She moved the towel and WOW! Yep she split it open good. I called my good friends at the pediatrics office. Dr. Kelley's nurse, Jill, who I think is an angel answers my call because I insist to the receptionist that I can talk to no one else. I tell her what is going on and she could do nothing but laugh. She tells me to bring Raelynn in and she would call the cardiologist and let them know we had been delayed......ARE YOU KIDDING ME!!!!! I rush her to Dr. Kelley's and they get us right in. We of course by this time we are on first name basis with them and feel like it is our home away from home. Jill takes one look at it and says yep we're going to need stitches. Raelynn was so strong. As she watched them get the instruments out she got a little nervous and the actual suturing was a little scary but she was amazing! Of course, she always is!!! So 4 stitches later Raelynn is patched up and we again direct our focus on Cooper. Now we decide to run Raelynn over to Sherri's since we were not sure how long we would be at the cardiologist's and she is on the way. As always Sherri is the perfect sister and drops everything to help us out. I sometimes have no idea what I would do without her. We get to the cardiologist and they do some testing and we see the Chief of the Children's Cardiac Center who originally diagnosed Cooper when I was still pregnant. He remembered us and it was pretty neat to see him again. He did the second Echo on Cooper himself and got a really good look at his shunt. They concluded that Coop's heart still looks good but some of his stats, i.e. blood pressure and SATS Level, are dropping therefore letting us know surgery time is approaching. They are to call me tomorrow to schedule his Cardiac Catheter which is just a procedure in which they go into his body and run a camera around his heart to get a really good look at what is going on. This will be an overnight procedure but is nothing risky at all. After that they will have a better idea about the time frame for the next open heart surgery.





Finally we are back home, kids are fed and bathed and in bed and I can take a deep breathe. It is amazing how calm and cool a parent can play it in front of the kids while inside we hurt worse than they do. I love Raelynn and Cooper so much sometimes it scares me. They are two of the most amazing people I know. It is days like today with all the scares that I am reminded how much to cherish our everyday, boring, repetitious schedules. I would take that any day over a day of fear like today.

As always I cannot thank our families, Lisa, Tom, Jill and all our friends for being so caring and understanding! You are all the best and we are unbelievably thankful to have you in our lives!!!