IT SURE WAS MONDAY....

You know how Monday's just seem hectic, well this one was no exception. The day started a little behind. I went to the gym about 30 minutes late and therefore got home about 30 minutes late. I left late because Cooper was just very fussy. I always feel bad waking Terry up at 4:30 am to take Coop when I am going to the gym to workout. It just seems selfish. So I waited to get him back to sleep. I guess he didn't stay asleep though because when I got home Terry was not too cheery :). Karli is staying with us this week because Lisa is on vacation. Therefore, I didn't really have to get the kids ready so I made the 30 minutes up pretty quickly. Raelynn is going through a phase right now where she doesn't want me ever to leave her so we had our morning cry when I left. I say "our" because when I leave and she is crying and begging me not to go I barely make it to the car before I am crying to. I wish I could stay with her I really do but I know I have to work. I have to work financially yes, but I truly think if I didn't I would be miserable. I just wish I could do both. So I made it to work on time now that Tom changed our office hours from 8:30am to 9am. This was the best thing ever. I am so much more relaxed in the mornings not stressing about being late and the funny thing is I am usually there now earlier than I was before. Anyway, so back to my day, work was chaos of course seeing as it was Monday and it is a short week. Jill was just leaving for lunch when I got a call from Karli. Cooper was throwing up and wouldn't stop crying and I could tell Karli couldn't either. I stopped Jill and begged for a lunch change and was out the door. When I got home Cooper was calmed but still pretty irritable. I am quite sure we are experiencing withdraw issues again as Sunday was another cut back on his Methadone and Adivan and he did not seem to be taking it too well. He is throwing up, sweating, itching and has diarrhea, all signs of withdraw. So I assured Karli I understood how scary it all was and how overwhelmed you can feel. I felt so bad for her because I really do know. I spent at least the first 2 days home crying because I never thought I could handle this. So I loaded Cooper, his medicine, his food and feeding pump, diaper bag, a few toys and his play mat and out the door we went back to work. Of course Raelynn loved this, remember she wanted to go with me this morning. We convinced her that she and Karli would have much more fun at the park. I got back to the chaos at work and thankfully Cooper fell asleep after about an hour. He slept all afternoon!!!! This was great for work but is sure to be hell tonight. Anyway, we are still fighting the withdraw this evening and I plan to call the doctors in the morning to see what they think. There is such a fine line we have to walk to make sure that he does not withdraw so hard that it causes problems with his heart but yet push it far enough that we get him off these drugs. Mommies shouldn't have to worry about this stuff. However, I am so thankful I have him to worry about. In between all of this I was also trying to get his Methadone prescription refilled. It is a controlled substance so the prescription cannot be faxed or called in. This left me with 3 options; pick it up at CMH in KC, drive to CMH in KC to pick up the written prescription or convince my local pediatrician to write the prescription and hand deliver it to my pharmacy. Of course I opted for the 3rd and called begging. They are the greatest people and the nurse we always look forward to seeing, Jill, took care of everything. I was able to pick it up right after work. Cooper and I rushed home after picking up the prescription just in time to tell Raelynn goodbye as she got to go with Aunt Bonnie to Tristen's baseball game. She looked so cute going off with Aunt Bonnie and she had a great time. She was most excited about the fact that Aunt Bonnie packed cheese and fruit for their picnic. She told me she ate all but 3 of the cheeses. I asked her what Aunt Bonnie ate and she said, "She's wasn't hungry!" It was so cute. So tomorrow is sure to bring its own "fun" and we will work through that too. Tomorrow is Raelynn's actual birthday and I want to do everything in my power to make it a special day for her!

RAELYNN'S PARTY WAS A SUCCESS....

Saturday we celebrated Raelynn's 3rd birthday. I can hardly believe it has already been 3 years. She is so grown up and the past 3 years with her have been the best of my entire life. We started Saturday morning with a new dress, of course! Then Raelynn, Karli and I went to get manicures and pedicures. Raelynn was so cute and loved it! Then we finished gathering last minute items for the party. Her party started at 4pm and things went great. Raelynn had a fantastic time with all her friends and just having a day where Mommy let her eat anything she wanted and stay up late. What more could a little girl want? She got so many wonderful gifts and she truly enjoyed her day!

Cooper is doing well also. I think we are going through some more withdraw issues as we cut his methadone and adivan down to 1X per day. We have an appointment with our pediatrician and our cardiologist this week so there is sure to be some new news regarding Cooper. He is looking great though and for the most part seems to be very happy. We had to replace his NG tube tonight just because it had been in for awhile and so we pulled it out about 7pm and did not have to put it back until about 9pm. As Karli said, "he looked so normal" and she was right. It was so good to see him with out the tube. I gave him a bath and for the first time did not have to worry about getting it wet or the end getting down in the tub. It will be so great when it is gone for good.

I

I feel so fortunate to have my babies and my family and friends, and as I sit here tonight I cannot help but feel so deeply sad. Before I updated my blog I read Taylor's and I cannot even wrap my mind or heart around how she must feel. Please keep her and Josh in your prayers because although I know their son will always be with them, the emptiness they must feel right now is sure to be paralyzing and they will need all our prayers to make their lives feel purposeful again. Another tragedy occurred this weekend as a friend of mine was hit on his bike Saturday morning and killed. Dave Dillon was a great guy. He had taken my Boot Camp class for awhile and then we spent a few months running together in the mornings. I hadn't seen him for quite awhile when Terry and I ran into him at T's. I am so glad I got to hug him and tell him I had missed him. This just shows that we do not know what any one day has in store for us and therefore we should always remember what and who is important. I think my kids probably think I am crazy but there is not a morning or night or anytime in between when I am with them I do not remind them how much I love them. I hold them when they ask, I kiss them when they smile or cry and I will allow them to grow and become their own people but never without telling them that they are my world! If I have learned nothing else over the last few months it is that things can change on a dime and much I have no control of. Therefore, the things I do, I will do my very best to portray my love and respect I have for my family and friends and life in general.

WELCOME HOME BABY NATHAN....

I was not able to make this post yesterday as the subject just hit too close to home. Nathan was born yesterday and was called home just minutes later. I do not know many details at this time but do know that his amazing Mom, Taylor and Dad, Josh were able to spend a few hours holding their precious gift. Nathan is at home with God and I know looking down on his Mom and Dad and feeling so proud of the parents he was given.

MY KIDS ARE THE GREATEST.....

Things are going really well. Cooper is sleeping through the night and does not even wake when we feed him and give him his meds. Wish we could sleep through the night!!!! He has had a couple spit ups but nothing compared to how he was. Last night I started back in with the massage therapy with him and you would not have believed how happy this made him. He was smiling and even laughing out loud. Raelynn also got a massage after Cooper and so I think we will be back to our nightly massages before bedtime. They both love them but who wouldn't! Raelynn was truly a doll last night. She was eating dinner and I was lying with Cooper in the living room because he was having one of his "I want to throw up" spells. Out of the blue Raelynn says, "Mommy you are the best Mom in the whole life". Now I realize that "in the whole life" doesn't make a lot of sense but you get her point and it was so sweet. She tells me all the time she loves me and is glad I'm her Mommy. Oh if this can just last until she is 25! Hahaha. Anyway, then we were talking that we needed to plant a tree for Cooper because we have 3 trees in our yard and she and Terry a long time ago designated one for her, one for me and one for Terry. Well anyway when I told her we needed to plant a tree for Cooper she said we didn't because she would share her tree with Cooper. I told her how sweet that was and she simple said, it's for Cooper! Are you understanding why I am so in love with this girl!!!

Yesterday Lisa sent me some pics of the kids. They are so cute and I love to see what they do while I am at work. Lisa has two boys Noah and Jarod. Noah loves Raelynn and Cooper so much and seems to always be helping with them. Jarod has a brotherly love for them as well which allows him to love them some days and be bothered by them on others. It is all so cute and I have said many times we are so fortunate to have Lisa and her family.

PLEASE PRAY FOR BABY NATHAN AND HIS FAMILY....

I just wanted to make a quick post as I know many of you keep up on Taylor's blog as well. Taylor's water has broke and she is at the hospital now. Please keep her and her family in your prayers as the next few days will be very emotional for them. Help them rejoice in the time they have with their sweet baby Nathan.

Taylor~ We all continue to admire you and look to your words for strength in our times of weakness. You have given us all so much by taking us with you through this journey.

THINGS ARE FALLING INTO PLACE.....

Oh how things are finally falling into place! Cooper is doing really well. We were in to see Dr. Kelley this morning and Cooper is up to 13lbs 4oz. His SAT level was higher than it ever had been at his office (it runs about 4 to 5 points lower than the readings in KC) and Dr. Kelley said his color looked great. Besides the technical stuff, Cooper has not thrown up since Friday and he is starting to make a little sound. On Thursday we switched Cooper back over to the crazily expensive formula he was on just a few weeks before we went in for surgery. It is easier for his body to breakdown and digest. We saw some relief to the throwing up with that change. On top of that, Lisa discovered on Friday that if you simply "talk" Cooper through it, he will gag and act as though he is going to throw up but is able to keep it down. So that is what we do. He has spit up a little during these episodes and he sweats horribly but he does not throw up like he was. This is such a relief to me. The throwing up was very scary to me and I couldn't help but think it meant there was more wrong than just an eating issue. It was around Sunday that Terry and I realized we were starting to hear more out of Cooper. It is still very weak and whispery but it is noise all the same. We are very hopeful that this means his vocal cord is not permanently damaged. Only time will tell. Again we will have no testing in regards to this until July 15th so we will continue feeding him with the feeding tube until then. Cooper's general disposition is so different now as well. He seems so content. He is the happiest when Raelynn is playing with him and she is more than happy to do so. The two of them together is like a little fantasy world and I cannot help but just watch with a smile and tear at the same time.

This weekend was a very busy weekend and we had several things planned to do. I have been hiding at home since we got out of the hospital because I did not know how to manage Cooper's feedings and medicines and still be out and about. With the events of the weekend I had no choice but to venture out and I am so glad I did. Cooper's feeding pump comes with this little backpack where you can rig everything up and just be feeding him as your walking along or riding in the car. I was wonderfully surprised how easy everything went. Of course I was extremely nervous that he would throw up or that people would look curiously at us when I had to give him his multiple medicines through the tube, but then I thought to myself how trivial this all was in the whole scheme of things. Well I was right. Cooper did great and I didn't receive too many weird looks :) Besides, he is so darn cute people are going to stare anyway!!! So we were on the go all day Saturday and Sunday and although hectic, I greatly enjoyed being out and about again.

One of our many ventures out this weekend was to the Dick's for the garage sale to benefit Cooper. I have never been so humbled in all my life. Terry has lived here all his life and I since 1995. We love Lawrence and definitely feel it is our home and we are happy to raise our kids here. But what I never felt until Saturday was how much this community has become our family. People were so gracious giving donations and paying much more than "garage sale" price for items. So many people referred to this blog and how they could not stop reading it. I realized that people learned more about me in the past month or so than I would have ever allowed and all the sudden felt so vulnerable to what everyone knew about me. This blog has been very therapeutic to me and has kept me from completely losing control of situations on several occasions, but what I did not know is what it has meant to some of the readers. You have all taken this journey with our family and therefore became a member of our family. There is never a word that can completely encompass the way I feel about my family and now you are all part of that. I had people approach me that I "knew" but only knew them in a polite hello or good morning sort of way and there I found myself hugging them and telling them not to cry. I felt their love for Cooper and I know that they were some of the ones praying for Cooper. I know that each of you are who are responsible for helping bring Cooper home with these prayers. Everyone is doing these amazing things for us but I realized everyone has already done the most amazing thing and that is helping bring Cooper home. I could go on forever and ever trying to say how touched I am by your actions but I know that until you sit where I am you will never know how this feels but I wish everyone could because it feels warm and comforting and makes everything seem like it will be ok. Again I want to thank you all that helped bring the garage sale together, who donated things, who purchased things, who made donations in general, who gave us some beautiful gifts and who simply said a prayer for us.

We are very blessed!

So our week continues in chaos as we are planning Raelynn's 3rd Birthday Party Saturday and continue to keep up with Cooper's schedule. However, it is getting easier every day and as we finished our last delicious meal from Jenny, Kelly brought over another for tomorrow. This has been a huge help as I am actually able to spend the hour I usually would cooking and rushing around to meet every one's demands holding them and playing and catching up on their little world. In a weird little way each of these hours seem to be giving me back a little of the lost time we spent in the hospital. So once again, THANK YOU! We love you all!

OUR FRIENDS AND FAMILY ARE AMAZING....

There is so much to update on. Since I am not sitting at the hospital all day with nothing to do, updating the blog is much harder than it used to be. So Wednesday was my first day back at work. The morning went relatively well even though Cooper puked his feeding tube out shortly before I was ready to head off to work. We got that put back in and I headed to Lisa's. This was her first full day with the kids and my first full day without them. Neither was easy for either of us. Things were going along until Cooper's noon feeding when he pulled his feeding tube out. I headed to Lisa's to put another one in. (2nd one of the day) We got that all situated and I headed back to work. I had planned to take my lunch hour around 2:45pm so that I could go back to Lisa's to walk through the 3pm feed and massive amounts of meds. We gave the first set of meds and then were getting ready to start his feed but there was something blocking the passage in the feeding tube. We tried and tried to fix it but ended up having to put yet another tube in (3rd one of the day). I got it in just fine but then could not get the wire pulled out. So I had to pull that tube and try yet another (4th tube of the day). Finally we got that one in. We were so off on our schedule by this time, Cooper was completely irritated and I was frustrated. I headed back to work about 4:30pm. I called Apria to send me more feeding tubes when they informed me that insurance only covered one. Are you kidding, we just went through 4 in 1 day!!! Cooper also was starting to throw up more often and in larger amounts. We made it through the evening and night and headed back to Lisa's this morning. Other than the fact we could not make it through one single feeding without Cooper throwing up, things went really well today. I called our pediatrician to discuss the throwing up issue and he was gone til morning. However, his wonderful nurse helped me decide to switch Cooper back over to Nutramogen, a formula we had him own when he was first born. Dr. Kelley had mentioned to us when we met with him that this is what he would try first if the throwing up became more often. Jill provided me with some samples and I took them over to Lisa. Cooper made it through his 3pm feeding without any problem on the new formula. He also did much better with the 6pm feeding as well but I did pick him up to soon after his feeding which we have learned is a big mistake. All in all though, things seemed to go a little smoother today. I am just very worried about the constant stomach problems and Lisa agrees it breaks our hearts to watch him because it is so evident that it hurts him. When he is not being sick though he seems so happy. He smiles and plays and it is wonderful to watch.

Tonight has went very well. Once again I did not have to rush home and prepare a meal because we are still enjoying the food Jenny brought over. This has really made a big difference in the nightly chaos. I am extremely tired due to the rigorous night schedule but feel so fortunate that things seem to be getting a little easier. Lisa is doing fabulous with everything and continues to just love on little Cooper as if he were her own and never letting me feel like this is as stressful as I know it is. Mom and my sisters are up this weekend to help Sherri prepare to move so they stopped by to visit this evening. It is always great to see them.

As I have mentioned before, there are some extremely thoughtful, helpful and amazing things being done by our family and friends in order to continue supporting us. I had mentioned to one of my friends, Amy, that I was going to make blankets to donate to CMH. The nurses are fanatics about the blankets they use on the babies beds in the PICU. The literally fight over and hide the cute ones. It is hilarious! Well Amy told her Mom, Michelle who lives in Utah, what I wanted to do. Michelle took it upon herself and made several wonderfully perfect blankets and sent them directly to me. I got home Wednesday, after having a rough day, and there was this box full of blankets. I was so excited and wished I could just hug her through the phone. They were all perfect and it meant so much that she would do this so quickly. On top of that, as I have said before, there have been some fundraisers being done and others being discussed and this has just brought tears to my eyes every time I hear about it. In addition, today Tom pulled me aside to tell me that he had established a trust account in Cooper's name for us to help make sure all the fundraising comes together and donations can be more easily made. Once again I sat in amazement at the kindness and thoughtfulness being shown to us. Oh I had thought about how I was going to separate things and such but had not had time to do anything more that think about it and now it was all taken care of.

As long as I live I will never forget what I have learned in the past month about myself and life in general nor the love, support and genuine kindness of our family and friends. If only each of you could crawl into my heart and feel what I feel, only then would you know how very grateful I am for each and everyone of you.

RAELYNN AND POHO.....

I cannot resist, you have to see this. Last night Terry put fertilizer on our yard and we had told Raelynn she couldn't let Poho out because he couldn't be in the grass because of the fertilizer. So tonight when we got home Raelynn wanted to go out back to play and of course Poho went out too. Raelynn was so distraught because he was in the grass. She had already been yelling at him for a few seconds when I grabbed the camera to record this. She really feels Poho is her dog and tells Terry every morning to take care of her dog while she's gone. It cracks me up!!!

BETTER DAY......

Today started out a little rough but ended well. Cooper slept really well last night only waking for about 45 min around 3 am. We got up and got everyone ready and was out the door by 8:30 am. I dropped the kids off at Lisa's for a trial run. Things were going relatively well until I starting running my errands. First, I was loading some stuff in my car and opened the back in the garage. Not smart. The back hatch hit the garage door and made a nice array of scratches. Then I headed to Walgreen's to pick up some pictures I had ordered online and found out I sent them to the wrong Walgreen's. They were at the Walgreen's clear across town. So I headed there and because of road construction got all messed up and while I was texting Tom apparently ran a stop sign. Luckily no one was coming from the other direction so no big deal except for the police officer who saw me do it. I stopped immediately when I saw his lights but I guess he wanted me to pull around the corner. I did not know what he wanted as he kept waving at me so he got on his intercom and said "Move your car around the corner". I thought I was going to die! I had my license and insurance ready when he approached, remember I still have no idea why I am being stopped. He told me I ran a stop sign and I just said I wasn't surprised. I thought about spilling my guts about how stressed out I was and the fact that I was texting and never saw the stop sign but instead I just apologized and told him I was very sorry with tears in my eyes. He understood and let me off with a warning. After that things improved. I got a thousand things done and picked Cooper up for his appointment with Dr. Kelley. Dr. Kelley spent a great amount of time reassuring us that things were going quite well with Cooper. Cooper is up to a whopping 13lbs and 25" long! He said that Cooper's throwing up was not too much and made it clear as to why we are feeding him so much. He clarified many other factors for us as well. He also let me know some of the medicines I could put right in Cooper's milk which is helping out greatly. Both he and Jill, Dr. Kelley's nurse, are amazing people. They give us reasons as to why we are doing some of this stuff which I always want to know and make us feel as though we are doing just as we should.

This was also Lisa's first day with the kids and I think it went relatively well. Just as it has taken me a couple days to get all of the feeding and medication schedule down, Lisa said it would take her a couple days as well. We are so thankful for her! Raelynn had a great time playing with the boys again and I think she was happy for things to be back to "normal" again.

Vicky stopped by after we got back home for a short visit and to pick up a few things for the garage sale. I had mentioned previously about the garage sale that was being held to raise money for Cooper. It is being held at Jimmy and Velda Dick's from 7 am to 3 pm this Saturday the 21st. I am not posting an address just for security purposes but please let me know if you need one. There are several of our friends who have gotten together to have this garage sale and I will never be able to thank them enough. Again, I think this is so thoughtful and hope you each know how much it means to us. We will of course be by to thank you each in person.

Kelly also stopped by and it was great to see her as well. Kaden is sooooo cute he brings smiles to your face as soon as you see him. So with the good visit from Dr. Kelley and our afternoon visitors, I feel pretty good tonight. Tomorrow I am headed back to work for my first day back. I am so fortunate to have such a patient boss but think it is about time we try to return to some sort of normalcy for us all. It will be very hard to leave Cooper but I know he is in good hands and I will visit him over my lunch hour. Life must go on so I am taking a deep breath and taking the next step.

WE WILL MAKE IT THROUGH ALL THIS....

I title this "We will make it through all this" because that is what I told myself over and over and over today. The day started at 3 am when I got up to give Cooper his medicine. That went ok, but Cooper woke shortly after and would not go back to sleep. I finally woke Terry at 6 am because it was Monday and of course I told myself it was time to head back to the gym. So I went and worked out. By the way, that kicked my butt! Anyway, the morning was going fine. I got to get Raelynn out of bed and seeing her smiling face in the morning would make any day start well. We ran some errands and I called to schedule the numerous follow up appointments I was told to schedule. Things were crazy just trying to get this stuff done, keep Raelynn entertained and just keep Cooper relatively happy. I was doing pretty good with the whole feeding and medication regiment until Cooper started getting pretty fussy. He seemed hot and the next minute cold and clammy. He threw up a few times and then finally threw up hard enough his feeding tube came out his mouth. I called Terry to ask him if he could come home before 3 pm, Cooper's next feeding time, to hold Cooper while I put in the new feeding tube. He said he would be there as soon as Kathy returned to the store. Around 2:30pm I found out Apria had messed up what we were suppose to get and I had to go there to picked stuff up. Again I called Terry to see if he could go by on his way home. That is when it happened... I was looking at Cooper and realized his face was getting pretty puffy. With everything else this just set me over the top. In tears I told Terry this was so hard. I don't know what's wrong with him and when things are things I should worry about. There is just so much "stuff" right now I don't know where to start. Of course, calm Terry told me just to call Dr. Kelley which I did. I am fairly certain that they think I have completely lost it considering there I sat in their waiting room crying. I tried so hard to keep it together. Anyway, Cooper is fine. I will go back and meet with Dr. Kelley tomorrow to go over all my questions and concerns but he checked Cooper out and he thought he was doing great. He has thrown up quite a bit tonight and is scratching his eyes and nose like crazy. I am thinking we are dealing with the withdraw stuff again. Anyway, I know if I can just make it through this first month I should be ok but boy how I hope the next month flies by. I am so thankful to be home and I would not want it any other way but it is amazing how much more responsible I feel for Cooper now that we are out of the hospital. Lisa came over late afternoon and got my crash course on Cooper's meds and feedings. I am sure she left with her head spinning but she did not let on. She is playing this all so cool. We are so thankful for her as I know there are few daycare providers who so willingly would take this all on. We are going to do a trial run tomorrow. I will drop the kids off with her and pick them up for Cooper's doctor appointment at 1pm. It will be a good practice for us both as I know it is going to be hard for me to leave them again.

My night ended on a high note though. Jenny was nice enough to bring over food, a lot of food. I will not have to cook for days! This makes me very happy and I so appreciated it! With starting back to work on Wednesday, I cannot even imagine how those first few evenings will feel so not having to worry about fixing dinner will be wonderful! Thanks Jenny!

Terry, Raelynn and Cooper are now fast asleep. I know I should be to but Cooper is currently being fed and with his throwing up I can not go to sleep while that is running. So I will just hope that when that is done he will not wake and I can sneak in an hour or two before he needs his next round of meds.

EVERYONE IS HOME TOGETHER.....

Last night went as well as could be expected. I think Terry and I went to bed around 12:30 or 1 am and I was up at 2,3,4 and then finally got up for good at 5:30 am. I don't know if Cooper actually woke up that much or I was just that paranoid about not being able to hear him if he did wake. I spent some more time this morning trying to organize Coop's feedings and medications. It is nicely organized but still chaotic. Dr. Kelley, our pediatrician, called today. I think I could have hugged him through the phone when I heard his voice. He had read the blog and knew I was a little overwhelmed. He assured me things were fine and gave me a few pieces of information to help me figure out what to do when Cooper does throw up his meds and asked me to try to figure out when Coop does most often get sick. I will see him on Tuesday and I am sure will feel much more at ease after that. Cooper is doing great though. He was awake much more today and he is getting control of his neck back. I am really amazed how I see progress being made daily.

The best part of the day was Raelynn getting home. She did not get here until around 4:15 pm. She ran in the house yelling Mommy and when she finally found me (I hid from her :) ) She squeezed me so tight and had the biggest smile on her face. As soon as she had told me hi she was asking where Cooper was and gave him hugs and kisses too. Then she was on to Dad. She was just so wound up!!! We headed over to Tom and Jan's after that. Taylor and Kaci are in town and it was really great to see them again. Of course our stay was short because we had to get back home for the 6pm feeding and 7pm meds. Tonight when I read Raelynn her bedtime story she kept interrupting to tell me she loved me, or she missed me, or if we were going to be there to wake her up. It was so sweet and I couldn't help but snuggle extra long tonight.

WE ARE HOME.....

So on the 25th day we were released!!!! Yeah!!! The doctors came in this morning and said they were either going to have to put us on the payroll or discharge us and thank goodness they decided on discharging. We were so excited. We got home about 3 pm and I have not stopped for one second since then. I wasn't the only one who enjoyed being home, Cooper seemed to be so content. He played and swung and just seemed to hang out. Tom and Jan stopped by to welcome us home and it was so good to see them. I feel like we have been away for a year!

Cooper is still having some problems keeping his food down and I am just hoping this will get better. I am more than overwhelmed with his feeding and medication regiment. We are either feeding him or giving him medication or doing both at 12am, 3am, 6am, 7am, 9am, 11am, 12pm, 1pm, 3pm, 6pm, 7pm, 9pm and 11pm. I was so stressed out figuring it all out I just sat down here on the computer and cried. I am going to call Dr. Kelley on Monday and try to meet with him as soon as possible to make sure that I have things spread out and timed the best way possible. Some of his meds cannot be given together and some cannot be given with his feeds. The feeds alone are crazy because they are every 3 hours but they are set to feed over a full hour. We ended up with a total of 10 meds. Anyway, I had no idea how impossible it would feel to make sure that Cooper gets what he needs. We also have the issue that at some of the times we give so many meds on a full stomach he throws up and then what? We don't know if he got the meds or if he just threw them up. Anyway, I am just hoping I can keep my mind through tomorrow and then hopefully will be able to see Dr. Kelley for some help. We have already had to put Cooper's feeding tube back in after once of the times he got sick. Of course this is just the tip of the ice berg too. I already have a list a mile long of things that need done. This is exactly what I told myself I was not going to do. I am trying to take a deep breath and convince myself that not every single thing needs done by Monday but I hate having things incomplete. O.C.D....I know!!!

Raelynn comes home tomorrow and does not know we are home. She will be so surprised and I am so excited to see her. This is sure to be one of the best Father's Day Terry will every have!

THINGS STILL GOING PRETTY WELL....

What a busy day! Things are finally settling down and I am finding time to update everyone. Cooper is still doing well. He is having some trouble keeping his food down though. We are thinking they are over feeding him so have backed them down and will see what happens. Other than that he is fine. I completed the training that I need to go home. We will be going home with the feeding tube and pump and 8 medications. They are printing out a time line so I will know time and dosages on the meds, thank goodness! They are not requiring Cooper to have an MRI before we leave the hospital. We will schedule that in a few months. So as far as I am concerned we are ready to get outta here!

We also had visitors today. Dean Pearce, an football official on the same crew as Terry, stopped by. I have only met Dean a time or two but what a genuinely nice guy. We visited for awhile and I was very happy he stopped by. I know it meant a lot to Terry too. This evening Tim and Amy came by and then Don and Cathy. Don and Cathy got the pleasure of learning how to work Cooper's feeding pump right along with me. Little Cooper was quite taken with Don and they entertained each other for some time. It was wonderful to see everyone and they made my night go by very quickly. I had dreaded the evening because I knew Terry would not be here until late but with friends around it turned out to be a fun night. Terry also had a great time. He played in the Bill Self Golf Tournament this afternoon and got to be on Coach Self's team. He loves this tournament and always has a great time. They placed 2nd so he got lots of goodies as well. He plays in the tournament and I get the goodies!!!!

We have had friends offer some very nice fundraisers for Cooper. We cannot thank you enough. As I have said before, I am trying not to dwell on the financial aspect of all this but I do know as we head home reality will set in. We are currently aware that there are some things that our insurance is not covering and therefore know there will be substantial bills. For you all to have been so supportive and loving through this has helped us tremendously and the fact that you are already thinking how you can help us in the next stage is so touching to us both. I truly do not know how we will every express our gratitude. As details of the fundraisers are established I will post the information and again, as sincerely as I can possible say it....thank you! You all are amazing! Terry, Raelynn, Cooper and I are so very lucky to have each and everyone of you in our lives!

WHAT A WHIRLWIND.....

Well things have been very busy here this morning! Cooper is doing good. I asked to give him a bath this morning and they were eager to let me. So I bathed him and dressed him in some cute clothes. Shortly after that Coop decided he was done with his IV and pulled it out. He is a quick little fella'. Anyway, it was the last IV he had and it was in his head. We are suppose to keep it until we leave here so I was so upset they would have to be sticking him but to my surprise they elected not to put it back in because he was not receiving any meds or anything else through it. So Cooper got his way and his IV is gone. That's my boy!!! Anyway, so the next thing I knew people, many people, started coming in and out flooding me with questions and information. So the story is they are trying to get us out of here by Sunday! Yes I said SUNDAY, the day after tomorrow! Yipee! Now there is no guarantee and many things that have to be done between now and then but that is the plan.

So in preparation for our long awaited departure they are trying to get Cooper up to 7 feedings of 130cc/feeding. They are still fortifying his milk to 24k/cal and therefore this seems like a lot. I worry about this a little because he is fed with a feeding tube so it is not like he will just stop if he gets too full. There is a nutritional team along with the doctors making these decisions though so I am sure it is ok. They also involved me and I expressed my concern and they are going to increase the feeds very gradually and therefore think it will be fine. They had discussed increasing his caloric intake as well but I let them know I did not think it was a good idea because we had experienced problems with this before. They agreed after hearing that we had tried it before. Cooper also had to go for a development screening and hearing screening this morning. He passed the hearing with flying colors and they had told me that he would not do well on the developmental because it is designed for 6 months and above and the 6 month olds just don't do very well. Coop once again surprised them and did really well! The test themselves are very weird and are done in the pressure booth that made both me and the nurse very dizzy and a little nauseous so I am not sure how Cooper was able to perform well. They said some people react this way to the booth and others don't but my head is still hurting and I feel really weird. Cooper is sleeping though so it must not have bothered him too much. We will be repeating these tests every 6 months until he is 5 and then yearly until he is 18. Yep, isn't that crazy! Studies have found delayed affects from ECMO that have affected hearing and development, hearing being the most prominent. We will also have repeat MRIs done yearly for the same reason. Needless to say we will forever be visitors of Children's Mercy and they will forever be recipients of our paychecks, hahaha! (I am trying my best to stay light hearted about that issue!) Standard hospital protocol is that an MRI must be done before we leave. In order for them to do the MRI, Cooper has to be completely sedated and back on the vent. Are you kidding me???!!!! Do they realize we are still suffering the consequences of the ventilator and still trying to wean him off the sedation medicines???!!! Well yes, apparently they do because the surgical staff is working desperately hard to waive the MRI at this time and schedule it in about 3 months. This would definitely be a set back if we were to have to do it right now and would keep us here again. We are to know about this by tomorrow.

We will go home with a very detailed medical plan consisting of strict feeding guidelines and medicine dosages. It will take us about another month to get Cooper weaned from the Ativan and Methadone. It will also be a big adjustment to learn to "read" him again. He has no voice so deciding why he is upset if sometimes difficult. Is he hurting? Is he just withdrawing? Is it his teeth? (oh yeah, he is starting to teeth through all of this) Is he hungry or tired? It is learning his cues all over again just like a newborn. Terry and I talked last night that we will begin introducing sign language as soon as we return home. This will give us another way to communicate in case this vocal cord or hearing issues become permanent. It will take a little getting used to things but it will be so nice to be home.

Cassidy and Chandler were by this morning and got to see Cooper for the first time since he came to the hospital. I think they were both very happy! Sherri headed back to Scott City to take Karli home today and of course Raelynn went along. I can only dream that we will be back home when she returns on Sunday!

WELCOME TO THE HYATT.....

Well we finally made it to the floor about 6pm! Let me tell 'ya, it is like staying at the Hyatt. We have a huge bathroom, a bed, refrigerator, desk, TV w/ Remote, DVD, sink.....it's great! They are laughing at me here because they said that people coming from the PICU are always so pleased. Anyway, our day went well. The PICU was extremely busy so our departure was quite delayed as we waited for on open bed on the floor. Everyone said such loving goodbyes from the PICU, they are such a wonderful group. When we got up to the 4th floor, 2 of the nurses were the same as the week we were here for the cardiac catheter so it was nice to see more familiar faces. We are just relaxing tonight and watching all the crazy weather. I asked Terry if we should call our neighbors to see if our house is ok and his response was, "Naaa we don't use it anyway". It really made me laugh.

MOVING DAY.....

Wow! What a morning! Things are chaos here with fire alarms and code blues everywhere. The good news is Cooper is headed to the 4th floor later this afternoon. He is doing great and the Blue Team from the floor was just by to acquaint themselves with Cooper. Things seem to be going well with weaning him off the Ativan and Methadone. They dropped the Methadone down by 10% this morning. He shows little agitation and his blood pressure and heart rate are very good. He is staying awake much more and wanting to play just like before. His neck is still slightly weak but that will come with time.

The OT was down this morning to talk about Cooper's feeding. If they take him for a swallow test now he will fail she is quite sure and then they would proceed with more drastic feeding measures. More than likely they would look at putting a tube in his stomach surgically that we could access to feed him. Because the fact that it is the right vocal cord that appears paralyzed is somewhat troubling to the doctors. Of course, once again, Cooper has a medical condition that does not make sense. Apparently it is the left vocal cord that is sometimes paralyzed in heart patients but according to Dr. O'Brien, with Cooper's heart condition it is not common. We have discussed the fact that the cannulas were on the right side and they may have caused the damage but again Dr. O'Brien said he would be surprised. Therefore, they are opting to not proceed forward with the swallow test at this time. We will go home with the NG tube (feeding tube that goes down his nose) for 1 month. At that time we will return and NT will look again at the vocal cord and see it has recovered. We will have a pretty good idea ourselves because if it is healing he will have a voice again. I am not thrilled with going home with the NG tube. We did last time and it is a real pain. However, it is what it is and we will adapt. I do not know where my new found patience is coming from but I think we have just had to deal with such life or death situations that the trivial things are just another step in the process to me now. If after the 1 month time, Cooper's vocal cord still appears paralyzed we will proceed forward with the swallow test and they will take things from there. My real concerns with all of this is that I will not be able to hear him cry. How will I wake at night? He is 6 months old now. He should be eating solids. How is this going to affect his growth? These are things I am concerned with. I think that I will be calling our pediatrician, Dr. Kelley, very soon because I know he will be able to tell me exactly how we are going to deal with all of this. Once again, I feel so fortunate to have the doctors we do.

So for now, I am celebrating our move to the floor and then you all know me. I will now starting asking when we get to go home! Maybe I haven't found new patience after all :) Thank you all again for your support. Please keep the prayers and comments coming.

We had a very adorable visitor today and I know my family will love this picture! Thanks Tatum and Donovan, we love you!

OH YET ANOTHER OBSTACLE.....

What a day! Things went fairly smoothly most of the day. Cooper is still doing very well even with the slight changes they made this morning. The Occupational Therapist (OT) came in for a consult on the feedings. After a short discussion with her she said we needed NT to come down and take a look at his vocal cords. They arrived about 7:30pm and determined that Cooper has a paralyzed right vocal cord. This happens because of the cannulas that were in for the ECMO. He may regain some movement in the vocal cord but it is unlikely. The long term outcome of this is not all that bad. He may have a somewhat raspier voice but for the most part his left vocal cord will compensate for the loss of the right. The short term implications however are more drastic. I do not fully grasp the whole idea yet but apparently your vocal cords move when you swallow and because Cooper's right vocal cord does not move properly it can let liquids move into the lungs instead of down the throat as they should. This basically means Cooper will have to learn to eat all over again. We have not met with the doctors or the OT again since we found out his vocal cord was paralyzed so I do not know what the next step will be. They just had X-ray up to take a look at his lungs to make sure that there is not fluid in them from our previous attempts to feed him. If there is this can develop into pneumonia and again be a very serious problem. We should have the results of the X-ray shortly. We Will not know anything further until the doctors round in the morning.

Surprisingly I am not that upset about the vocal cord. At this stage of the game I look much more at the long term affect to Cooper and long term he will not be that affected unless he wanted to be an opera singer. In which case, I will consider this a blessing :). The immediate is the realization that we will probably go home with a feeding tube and will have to hassle with that for awhile. We had it last time for 1 week and it was extremely time consuming. However, I have several questions considering Cooper should be eating some solids by this time anyway and not sure how all of this will play out.

I am still wishfully hoping that we will go to the floor tomorrow but not sure how this will affect everything. I am not going running in the morning because I do not want to miss anything. Therefore, I will get the blog updated as soon as I know more in the morning. Please keep praying for our little boy as his struggle to recovery is not over yet. Please also remember all of those here. We have seen some pretty devastating admits in the last couple of days including one last night that did not even make it to morning and yet another I understand to be very critical. The things most of us only hear about on the news are our next door neighbors right now and need all the prayers they can get. Also remember little Granton who's treatment was complete yesterday. He is hanging in there like a champion and they should know by this weekend if his little body will accept what it has been given.

****Thanks for the wonderful visit Amy. You make time go by so much quicker and I love getting to see you!***

HE FELL ASLEEP IN MY ARMS.....

Last night went really well again. Of course it did, we had our fun nurse Erin again. (To Erin's Mom: You are right, Cooper is doing great because he has a great nurse! You should be very proud, we love her!) Cooper was full of smiles and he left her another poopy diaper right before shift change. That is how we know he likes her. :) The morning has went well too. Cooper woke up about 6:30 am and did not go back to sleep until 10:45am. He was happy the whole time and even played in his Bumbo. His neck is still very week so we have to be careful. I have not held Cooper much because it seems to irritate him. We were not sure if it was a pain issue or what but this morning I picked him up and we smiled and talked and before I knew it he fell asleep in my arms. I have to admit I shed a few tears. It finally seems as though we are getting Cooper back.

Today they have turned off the Milrinone and if all goes well the will pull the IV in his neck tomorrow and we will head to the 4th floor. Yeah! They have also decreased his Ativan by 10% today and if that goes well will decrease the Methadone by 10% and will continue this process until we get him weaned off. They have switched all medications to oral now so there will be nothing going through the IV. They are requesting a consult with the Occupational Therapist to help us get Cooper eating again. It appears to me that he is not eating because it hurts to swallow but they want to make sure that is all that is going on. He still does not have a voice and will examine his vocal cords if that does not come back before we are ready to leave. They have also taken his breathing treatments to just 2x per day. Cooper is not a big fan of these so for him I am happy.

They are drawing blood from Terry and I to do the genetic test and we meet with the geneticist September 9th. Yep September 9th. This is apparently a very slow process. I am not worrying about this for now. I will save it to worry about in September, hahaha!

Terry stopped by to see Raelynn last night on the way up here and she asked him when we get to move back home. Does that not break your heart? I miss that girl so much!!! I will never be able to explain how it feels when she hugs me. She hugs so tight I feel it so deep inside and it feels so good when it is the hello hug and yet the same hug hurts so bad when it is the goodbye hug. I have never felt anything like it but I guess until you're a Mommy of such special babies you never do!

CHROMOSOME 9

Cooper had a good night. He slept comfortably and did not seem to be too distressed. He even gave Erin a nice poopy diaper to change right before shift change :). Yesterday our nurse, Beth, let me dress Cooper. It was great to see him in clothes again. He is looking more and more like our little boy everyday. Today they have cut his Milrinone in 1/2 and hope to shut it off tomorrow. This is the heart medicine that they are changing over to the oral medication Captopril. The also changed from the cloridine patch to giving it orally so that it is easier to wean him off. They will not make any further changes today. Tomorrow they will start adjusting the pain meds if all goes well. They are just taking things very slow so as to not have set backs. They have tentatively said that if all goes well we could move to the 4th floor Thursday but we will just have to wait and see.

They reviewed Cooper's genetic tests and found that he has an extra band on Chromosome 9. This is not a diagnosable genetic disorder and probably is nothing. They will take blood from Terry and I and if one of us has it then that will be the end of it and no big deal because we are healthy. If one of us is not a carrier then they will look further into it to see if they show any defects related to this extra band. There are birth defects related to Chromosome 9 but they are not presented by an extra band but rather a skip and mutation in it. Everything I could find about Chromosome 9 defects were mostly related to nervous system disorders. Anyway, I do not think this is going to be any big deal but we are just going to make sure.

So while I was sitting here typing we had visitors. Sherri came over with the kids. I was so excited and I had found a new park on my run this morning. So Sherri sat with Cooper and Karli and I took the kids to the new park. It didn't seem so far away this morning when I was running but after carrying Raelynn, it seemed a little further. We had a great time and it was worth the walk. We came back to the hospital and I brought Raelynn in to see Cooper and Sherri had him laughing. It was great! They were just playing away. We sat Raelynn in his bed and she made him smile so big!!!! So needless to say we had a very good morning. I tried to feed him by bottle around 11am and he only ate about 5cc but we will continue trying every 3 hours. Cooper is sleeping now and just looks wonderful. I really think we are moving in the right direction again.

This was Cooper smiling at his big Sis!!!

ANOTHER WEEK....

I just had a consult with the new intensavist for the week, Dr. Erica Molitor-Kirsch. She was very sympathetic to the fact we have been here a very long time and recognized the fact that each week when a new doctor comes on, they change the general care of Cooper. She said she knew this was a concern of mine and wanted to assure me that she will make no major changes. Cooper's heart is doing well. It is still slightly swollen but this is to be expected. She does not think they will be doing anything further in regards to his heart this stay. His incision looks very good and is healing nicely. His lungs are also doing much better. His x-ray this morning looked much better than it had. The swelling in his stomach and liver has subsided and Cooper looks like Cooper again. All in all, Cooper is recovering well from the heart surgery. They still have to get him switched completely over to the Digoxin and Captopril but believes they have found the correct dose of Captopril so this shouldn't take long. However, the issue of withdraw is another matter. Cooper had a very hard time when they removed his drips and Cloridine patch. Basically they have loaded him back up with Ativan and Methadone. He did not sleep at all last night and finally dozed off around 6am. They have kept him well "drugged" so far today and he has been sleeping. They basically had to start over with this process. When Cooper started going through the withdraw his blood pressure elevated and SAT level dropped. They could not chance he would go into heart failure and did not want him to go back on the ventilator either so they drugged him back up. Today they do not plan to make any major changes. They have ordered a consult with pharmaceutical and they will now be involved in the plan that is derived to get Cooper off the meds. They will then follow us to the 4th floor and that way we have a consistent team to oversee this process when we leave the PICU. I am to meet with them today. They do not assume we will be released from the PICU for another week or so. As if that was not enough bad news they also said that they saw a small abnormality in one of Cooper's genes and have ordered a copy of the full genetic testing that they did when he was born. They said that it is very small and may not even be determined a genetic disorder but want to follow up on this. We had never been told about this before and that does not make me very happy. Dr. Molitor-Kirsch said this is nothing to worry about at this time but just want to find out exactly what it is. I will meet with the geneticist later today as well. I have also been asked if I would like to meet with a financial assistant consultant to review any options we may need as they are roughly estimating we will not walk out of here under a million dollars!!! I opted to meet with them.

Did I mention I hate Monday's! Monday's always bring bad news! Did I mention I want out of here! 19 days and counting!!!!! Everything is starting to make me angry. I know this too shall pass but let's be honest, that does not help right now! Trust me, I do realize that there is a lot of good news for Cooper too and I am glad that his heart is recovering but who would have thought about everything else. I think there should be a book for parents, "Best Case Scenarios and Worse Case Scenarios; A parents guide to dealing with the ups and downs without poking your eyes out!" See I already have the title for it.

I did go running this morning and good thing after all this. I headed out and it was slightly raining. I knew I needed to run west but I decided to go a little north first because there was a long sidewalk. Big mistake! So you have all seen those runners standing at a crosswalk who just keep jogging in place and as you drive by you think to yourself they are crazy. Well that was me this morning. There are a hundred crosswalks and so much traffic you actually have to obey them. So I am jogging in place at this cross walk looking around and realize there are quite a few homeless and empty buildings. Was making a conscious decision I probably needed to not go any further when a homeless man approach and asked me something about my Ipod. I was politely telling him I needed it to run when a man in a suit was approaching and he put his arm around my shoulders and led me away from the homeless man while telling me, "You do not talk to the homeless and you need to run not go any further North or East only West!" I thanked him and headed West. It made me laugh a little bit because when the homeless man approached me I knew I shouldn't talk to him but I also didn't want to be rude. Anyway, I headed west and discovered Town Center is right here. I ran all over Town Center and every time I saw stairs ran them 3X. Do you know how many sets of stairs there are in Town Center and Washington Park? Thousands! Probably not but by the time I was done it felt like it. It was a great run and everyone was pleased to see me return. I will definitely start doing that every morning. I felt very good afterwards.

Well the pharmaceutical team is here so I will keep you updated.

WE ARE BACK ON THE INTERNET.....

Well we have fixed the Internet, yeah! Cooper is still struggling a lot. He is throwing up, sweating and generally irritated with most everything. No one can tell us how long this will last but I hope not much longer. It is really sad to watch. Lisa, Aunt Sherri, Aunt Karli and Raelynn all came to visit today. Raelynn, Karli and I went out and had another picnic. We like the picnics a lot. It was nice to have visitors to break up the day. We are now just sitting in the room staring at Cooper to make sure he does not wake angry and try to pull out every tube he has. (He has pulled out his feeding tube 2X). Enjoy the pictures from last night :)

**To answer some of your questions, the heart meds that Cooper will go home on are Digoxin which makes the heart muscle beat stronger alleviating the symptoms of heart failure caused by a weak heart and the other is Captopril which is used to lower his blood pressure and allow more blood to move to the body and less into the lungs.

OH MY GOSH!!!!

I have so much to say but not much time to say it. First I want to let you all know the wireless connection at the hospital is down and therefore I am unable to use the laptop and that is why you saw no updates today, or I guess yesterday since it is 12:15 am now. Anyway, I am working on getting and internet card so hopefully that will fix the problem. Let's see....my night with Raelynn was fabulous. We made pizzas, huge pizzas and that was a lot of fun. The best part for me was when she woke up this morning and hollered for "Mommy" and when I walked in her room she had the biggest grin on her face ever. She said she would scooch over so I could lay beside her for a little bit. I tell 'ya that girl is so darn cute and knows just how to make me fall deeper in love with her second by second. Anyway, I could go on and on about our night but I have so much more to update you on.

Sherri and Cooper got along just fine Friday afternoon and he was even up playing with toys. Daddy and Cooper did great last night as well. The nurses got some great pics of Daddy and Coop sound asleep together in the chair. I will post them as soon as I get Internet access again. Anyway, so this morning they made some pretty big changes with Coop. They removed all his drips and started adjusting his heart meds as well. He also had this patch on that was a form of pain medication and they removed that too. He is still getting a couple pain/sleepy meds but at lower dosages. Well I guess Cooper finally realized all his pain meds were gone because around 3:00pm all hell broke loose. He was crying terribly and remember he still does not have a voice. However, even without hearing his cries, it was horrible. They finally gave him a little morphine to calm him down. He also basically stopped eating. It seems his little throat hurts so bad he just didn't want swallow. Valerie, our nurse and also our nurse last time we were here, was great. She reminded me the important thing right now was that Coop ate and if he had to get it through a feeding tube so be it. She assured me that he would not forget how to eat it would just take time for his throat to heal. Then about 6pm I headed down to eat and WHAM! on came a migraine. I took my medicine so I survived it but there for a couple hours I felt pretty gross. Then about 8pm Cooper started gagging and throwing up something awful. We have a newer nurse who had just completed orientation. She is super sweet but new. Cooper threw up all over everything including his central line IV so it had to be changed. Well that just didn't go so well. Unfortunately that was the first our nurse had done it and before it was all over I was giving the orders. Now they call me Nurse Kristi, hahaha! Well anyway, I know everyone has to learn but it was a very scary thing. The Charge Nurse however is Sara, this absolutely amazing and hilarius nurse who I love. She was there the whole time and did a wonderful job of controlling the situation. I really admire her. After 3 attempts by our nurse Sara ended up having to do it. So basically Cooper has had a very rough day and heading to the 4th floor tomorrow does not look too promising. We knew getting him off all his pain meds was going to be a trick but WOW I had no idea. The funny thing is I am not as disappointed as I thought I would be. I am ok with it. He needs to be strong and I know each day he will grow stronger. We'll make it to the floor.....someday.

I will do my best to make a post tomorrow/today to let you know how things turn out. Oh, and also with all the chaos Terry actually remembered our anniversary and came back to the hospital tonight with a card and rainbow twizzlers. How appropriate wouldn't you think? So thank Terry and I love you very much!

THINGS STILL LOOKING BRIGHT....

Today is going well. Cooper is keeping his vitals up and his SAT level is actually higher than it was on the ventilator. They have completely removed the drips for his sleepy and pain meds and have cut the others in half yet again and only giving them every 8 hours. They are also starting to switch the heart meds over to those that we will go home with. The oxygen in his nose has been removed. He still has the feeding tube but I was able to feed him by bottle for the first time around noon. He did great. He is just recovering by leaps and bounds. We expect to go to the floor this weekend sometime and they have began small steps towards that move. Everyone seems to be very pleased with his progress. I am thrilled!!!

Sherri is coming over this afternoon to be with Cooper while I spend some time with Raelynn. I have not seen her for 3 days and starting to go through some withdraw myself. Sherri will stay here until Terry comes after work and then he will spend the night with Cooper and guess what? I get to spend the evening in my own bed with my daughter. I can hardly wait. It has been 16 days since I have slept in a bed let alone my own. I am very excited. We plan to do laundry and repack our bags, act silly and make pizzas. It is sure to be a wonderful night. Dad got to hold Coop before leaving for work!

WE SEE OUR RAINBOW....

Ok where do I even start? First, thank you all for sharing in our excitement. I felt each of your joys, tears and laughter as I read your comments. I love that about you all and it made me even happier. I have given Cooper enough hugs and kisses today to take care of all your hug requests I am sure. Tom said Cooper is our rainbow through the rain and boy was he right. Just to show you what kind of people are here, the comment from Erin....that was one of our nurses. How sweet is that. So thank you all and on to the good stuff :)



Our day began with much excitement as you know with Kitty pulling Coop's staples and dressings. They look really good. The one in the neck where the large cannuals were is pretty scary looking but it is in a very difficult place and we will just have to take very tender care of it. Besides, who cares about a few scares!!! Jan, Jana and Emma came to visit late morning. It was wonderful to see them and we had a great visit. Cooper even tried to peak at them once or twice but was still just too tired at that point. Unfortunately Cooper wasn't able to see Emma but I sure did and she is just adorable! After they left I tried very hard to wake Cooper but was told he had to wake on his own before we could remove the ventilator....Stupid Rules!!! Cooper started to wake a little when Leigh Ann, Madison and Morgan came to visit. They were only able to stay for a short while because things were starting to move with Cooper. It was great to see them though!!! As I was being called back to Cooper's room Aunt Bonnie and Nan were walking in. As I ran passed them and invited one of them back for the big event. Bonnie came running and got to help hold Cooper while they pulled the tube. I am not sure she was really pleased to be there for the whole event but I was very happy to have her there. Nan also came back to visit with Cooper and both he and I were so happy to see her. So needless to say, today was a fabulous day for visits.


Now for the best part. Cooper finally woke enough for the team to decide to pull the ventilator. I remember from last time that this is not a great experience. However, even as I type this just 8 hours later I truly do not remember the bad scary parts. What I do remember is seeing those big blue eyes and seeing those amazingly cute lips. He looked so perfect! I had not seen those precious eyes for so long. The rest of the day he was in and out. At 6pm, Beth, another wonderful nurse, poked her head in and asked if I had held him yet. I shook my head and she said to grab a chair. And that was that. I held my soft miraculous baby. It felt so good I cannot even begin to tell you. Those of you who have had children and remember the first time you got to hold them can relate. The feeling is so calming and perfect. Terry always says "it isn't Kristi's world" but while I sat there holding him that is exactly what it was.



He is doing well. His throat has been scratched and is very swollen but he is staying strong . His stats and lab work looked very good. He slips in and out of sleep and we are just trying to keep him "comfortable" right now. Terry holds one hand and I the other every time his eyes open. Tonight, whether I get to sleep or not, I will rest soundly.

IT IS OUT......

The vent came out at 1:40pm. I do not even know how to tell you how excited I am. I am also extremely excited to figure out how to post pictures from here. Anyway, he is holding up like a champ and looking great. I will tell you all about how great it was to see his sweet eyes and lips this evening when I can sit still long enough to tell you. Aunt Bonnie was here too for the whole thing. I have not held him yet but am getting ready to ask when I can. His RT, Teresa, is also pictured. She is who removed the tube. I will tell you all about it later but for now YIPEE!

OK, OK, OK

I keep getting texts as to status, we are still waiting. We have spent 15 days trying keep Cooper asleep and he finally caught on. Now we need him to wake up and he is sleeping!!! His numbers look great and they are ready but the little man needs to be more awake. We have had lots of visitors (nurses) in and out waiting for the big event. He looks so cute too. Our night nurse, Erin, who we adore made his bed really bright and cute and gave him a real good scrub down (she was calling him stinky pants!) for his big day. So everything is in place and now we are just waiting.

STEP ONE COMPLETE...

The night went great. Cooper is waking up quite a bit. They have already removed all the staples and the dressing Step 1 is complete. Hold your breath, the next one is the big one!

STILL ON TRACK....

Here are today's highlights:

1. Reba was on Oprah. I love Reba. She has this silly sitcom on every night and Raelynn and I think it is hilarious. I am sure Coop will like it too and whether Terry admits it or not, it cracks him up too.

2. I found a website called www.exboyfriendjewelry.com. You have to check it out. It is so funny. It is a website where you can post jewelry to sell that you received from ex's. The funny part is that the story behind the jewelry is attached to each posting. I tell you it entertained quite a few nurses and respiratory therapists. We were laughing so hard we drew more attention to the room and eventually woke my sedated son!!!

Well really those were the highlights of the day. Which after the past couple days I was happy to have an uneventful one. Coop is doing fabulous coming off the vent. His stats are staying strong and oxygen level is doing great. They have taken him off the the IV food and he is receiving all formula now. This is great. He is staying very comfortable and has not been given any extra meds other than those scheduled. So right now we are still right on track for tomorrow. Everyone has been by and said he looks great. Our cardiologist, Dr. Kaine, had been gone for a few days so came by today. He said he was disappointed to hear about the hole in the patch but we would work through it and just keep watching Cooper. He said would remain very close friends, hahaha! He also laughed at the fact that this hole actually has helped with the pressures in his heart and actually has aided in his current recovery just would be an issue as time goes on. He was happy with how Cooper was doing though after everything he had been through.

Tomorrow is set up to be a very busy day and I am pretty excited about that. I like busy days! They will take Coop off the vent, remove his staples and the last dressing. Jan and Jana are planning to visit late morning and Nan and Aunt Bonnie mid afternoon. We love visitors so we are pretty excited about that.

Please continue your prayers, they make all the difference. We so appreciate each and every one.

IT'S A NEW DAY.....

Cooper news first.....they have turned down his drips again. This is good. The drips are the sleep and pain meds we have to get rid of. He is starting to wake a little more and I have seen his little eyes a couple of times. He does not seem to be in much pain thank goodness and his withdrawal symptoms have been pretty much limited to jitters and itchy eyes. They are also weaning the ventilator more today with the plan to remove it in the morning. Yes I said remove it in the morning! I am trying so hard not to be uncontrollably excited because as we all know things can change on a dime around here but the truth is I can hardly wait. Once the ventilator is gone I can hold Cooper. It has been 14 days since I held him! They also are going to be taking his staples out today or tomorrow and removing the last dressing that is over the area where his drainage tubes. Once all that is done he will just be left with 2 IVS and look like a little baby again. They have also increased his feeds and decreased the amount of lipids which is also all good news. So all in all the day is beginning with great news for Cooper!

This morning, Michelle, this perfectly wonderful nurse who I have really gotten to know, brought me Twizzlers and skittles. You know you have been here way to long when they even know the treats you like. She said she felt so bad for us yesterday and knew there was nothing she could do for Cooper so she thought she would just try to help me. She is a doll. I also decided today that as soon as I am able to go home and get more clothes I am going to start running again. I had been avoiding it because we are not in a very safe area and there is no where to run except outside. However, I decided poking my eyeballs out was not safe either so I am going to take my chances with running. I have been told to just make sure I only run to the west and to run only during daylight hours and I should be fine so that is the plan. I think it will make me feel much better.

Hopefully I will not have another update until this evening. That will mean everything went as planned and nothing has changed except for the better.

FURTHER EXPLANATION....

Sometimes explaining things in this blog helps me make sure I fully understand what is told to me. Dr. O'Brien is still in surgery so part of the cardiac team came to talk to me. They were told by my sweet nurse that they needed to before the end of the day. This is what they said. Again, Dr. R found a small hole in the stitching of the patch that was used to close Cooper's VSD. This type of thing happens but most often after a few months and therefore tissue and blood cells have built up around the stitching so when this happens the hole is closed up anyway. The hole is approximately 4mm. They believe Cooper's occurred simply because of the substantial pressure he has encountered in the past few days while his heart tried to pump blood into his somewhat restricted pulmonary arteries. So if they were to view this problem as it is now and thought of it as a small VSD on an infant they would typically restrict, not stop, but restrict the blood flow to the pulmonary arteries. Then they would give it some time to see if it repairs itself or if further repairs would need to be made. In Cooper's case, if you remember, I have said that his pulmonary arteries are small and restricted. So in essence, what caused this problem is also what is temporarily fixing it. Now, there are several scenarios and Dr. O'Brien will be the one to make the final decision however they assured me that Dr. O'Brien made it perfectly clear early today that entering back into open heart surgery was not something he wanted to consider for Cooper at this time.

They have now sent orders to continue the weaning process. They have started turning down the ventilator again and lowered the meds they are trying to get him off of. Once again, I think this is good news. Now what I will have for you in the next two hours, only time will tell. Hahaha!

HERE WE GO AGAIN......

So let me see if I can do this, what a difference a few hours can make. The doctor that diagnosed Cooper's condition when I was 4 moths pregnant, Dr. R (I have no idea how to spell his name), well he was in today to do a follow up ECHO. He is the Chief Cardiologist and has not been wrong about one little thing yet. Well he himself came in to do the ECHO and determined there is a small hole in the patch that Dr. O'Brien did. He said it appears some of the stitching came undone. He also determined the the Pulmonary Arteries are extremely small. He said that he will consult with Dr. O'Brien but believed they would have to observe Cooper over the next SEVERAL days and wait to see what happens but additional surgery is possible. He said they would definitely need to go back in through a cardiac catheter and balloon the pulmonary arteries. I don't know if Cooper can handle another surgery! I don't know if I can handle another surgery. I just want to take him home!

Right before all of this Sherri, Karli, the girls and Raelynn came over. We went out to the park to have a picnic and play. It was wonderful. Raelynn hugs me so tight. But today when she left she didn't just give me love and leave with a smile on her face. I put her on the elevator and she came running off crying asking me to not leave her. Can this get any harder. I had done such a good job of not crying in front of her but I couldn't do it any more. I ended up carrying her all the way to the van and buckling her sweet little self in her car seat and sticking a kiss she had given me in my pocket for Cooper. I carried that kiss all the way back up here to Cooper and gave it to him and then just stood and cried thinking how much easier this would all be if I just didn't love them so much.

So everyone has been in to see what they can do for me and it is impossible to tell nice people to just leave me alone but that is all I want them to do. Instead I smile and say I am fine. I will be fine and who cares about me, just make Cooper better and make sure Raelynn knows how much I love her and that nothing else in this world would keep me away from her like this.

THINGS ARE BETTER.....

THEY ARE NOT GOING BACK IN TO HIS LITTLE HEART!!!! Great news! So this morning when the surgeon, Dr. O'Brien made rounds he said everything looked good and they would pull the drainage tubes today. I said, then your not going to have to go back in. He looked puzzled and when I told him what we were told yesterday he was very upset. He said Cooper looks great and the manner in which they fixed his heart there will be slight leakage. He said he would have a talk with the other doctors. Not 10 minutes later they were in our room apologizing for the "misunderstanding". I am not angry in any way, I think the doctors are very good. What I do think is that our surgeon did some modification that helped to compensate for the problems that he thought we would encounter. We are now encountering them and the other doctors just don't fully understand that Dr. O'Brien already took these into consideration and made modifications in Cooper's little heart. So basically I think Dr. O'Brien is a genius! Anyway, so now they are proceeding forward with trying to get him off the ventilator. It will continue to be a slow process but at least we are moving forward again. Cooper has been given two medications that help his heart function better and I get the impression that he may always take medications but that is fine by me. Medications I can deal with, starting this process all over again I can't.

So Cooper's drainage tubes in his heart are out and they only thing left to do with that area is to pull his staples and that should happen tomorrow. All we are waiting on now is to get him off the ventilator!!!

Raelynn is suppose to visit today and we are going to have a little picnic outside thanks to Sherri. I really need to see her sweet face! I miss her so much. It is getting harder to tell her goodbye each time she comes to visit, but she is still her little spunky self and continues to act like everything is ok. However she does keep asking me when she can come live with us again. I just smile and tell her soon I hope. She says "when they finish fixing Cooper's heart?" Honestly, she is beyond her years. She never seems resentful to Cooper either. She always is more concerned with how he is doing than with anything else. She is quite amazing!

TAKING A DEEP BREATH AND WAITING....

We received the results of the ECHO and ultra sounds. Cooper's organs are fine just have extra fluid around them. The heart on the other hand has a small leak in the patch that was used to fix it. The doctors will be consulting with Dr. O'Brien in the morning to determine if they will just treat the heart with medication, perform another cardiac catheter to get a better look, or will once again enter his tiny heart to fix the leak and we will start all over. That is it. That is what we have to think about until morning.