GREAT BIRTHDAY WEEKEND....

The weekends seem to go by so fast. Friday was my birthday and Steph came up from Manhattan. When I got home, Raelynn and Steph had baked me a birthday cake and I had lots of wonderful gifts waiting. We headed to Raelynn's swimming lessons and then met Lisa at On The Border. We had a great dinner and then went home to get the kids ready for bed. Terry was reffing a football game so it was great to have Steph there to spend the evening with. I got a massage from both Terry and Lisa and I cannot even tell you how much I look forward to them! These days there is little time for relaxing so the thought of having a few hours all to myself, resting and getting a fabulous massage is pretty much the best thing I can think of. Saturday morning we went out shopping and picking up a few things we needed. I stumbled upon some wonderful bargains which never happens to me so I was pretty happy. We had a wedding late Saturday afternoon and after that came home to cook Steph a home cooked meal. Now that she is in college, eating out is not near as fun for her. We had fun doing that and drank a little wine while we cooked which always makes cooking so much more enjoyable. Today it was off to church and then over to Jill's for Taylor's 2nd Birthday. Raelynn had a great time despite the wind and cold. So needless to say, it was another busy weekend. Cooper has gotten a cough and has never really seemed to get over his cold. We see Dr. Kelley in the morning but I am doubtful we will have the MRI on Tuesday. I can't say I would be disappointed but I am ready to get it over with. It seems that each time it is rescheduled it just extends the time I have to worry about it.

Tonight after 2 long days and no naps, as I put Raelynn to bed she asked if I would lay and snuggle after we had read her story. As if anyone could turn that down, I crawled under the covers to snuggle for a few minutes. Raelynn and I lay there talking and giggling and she turned to me and gave me a sweet kiss and told me she loved me. After awhile I left her room and went out to cuddle with Cooper before he went to sleep too. He has started kissing and as I held him him he lifted his head and gave me a great big slobbery kiss. Afterwards he smiled and giggled. Their kisses are so different and are given in such different expressions but they both make long days full of frustrations magically disappear and remind me how amazing it is to be a mother, their mother.

EXCITING STUFF.....

Today was a day of so much excitement. A few weeks ago Lisa told me she needed this afternoon off to go to the eye doctor. Of course since Sherri moved I have not taken time to find a back up in case Lisa needed a day off. It was mostly because I had no idea where to start nor did I really want to think about leaving the kids somewhere I was not familiar with. But it was now time I had to figure something out. I called Kelly because I really had no idea where to start. She said she would call her daycare provider, Mary Beth, and see if she would be able to. Kelly always spoke highly of her and our neighbors also take their son there. I called her the next day and she was more than happy to take the kids. She had actually participated in the Cooper's Cause 5K/Fun Run so she already knew about Cooper's situation and it did not seem to bother her at all. So today I picked the kids up from Lisa's and took them to Mary Beth's. I was pretty nervous because it is just scary to leave your precious kids with someone you know little about. My nerves were quickly calmed. Mary Beth was a wonderful upbeat lady with a perfectly beautiful house and was truly excited we were there. Her Mom, Karen, is there as well helping with the daycare. Come to find out Terry knows her husband and her son was the perfect little gentleman that had come up and introduced himself to Cooper and I at the 5K. His name is Cooper too. Tonight when I picked the kids up, Raelynn didn't even want to leave. There were other kids there she loved to play with and of course Cayman was there, our neighbor, who she truly adores. I was so relieved, excited and grateful that things went so well. Mary Beth was wonderful and offered to be my back up when needed. It all made me feel so good and again grateful for the wonderful people that continue to show up in our lives.

The other wonderful thing that happened today was a thoughtful offer from my friend Jenny. Jenny works in an office right behind ours. We have really gotten to know each other over the past few years with the kids and work and life in general. She has been very supportive and helped with the various fund raisers for Cooper. Recently she started her own business of making and selling jewelry. Today she stopped by the office to show me a wonderfully simple but quaint silver bracelet with a red heart dangle. She had made the bracelet especially for Cooper's Cause and wanted to donate $5 of every sale to Cooper's Cause Foundation. Once again I am amazed by people's kindness and thoughtfulness. She is a great Mom of two, working full time and trying to start up her own business but yet still has time to think about our dream, Cooper's Cause Foundation. Of course I graciously accepted. Her website is http://www.geminigemssite.com/. Click on Product List and at the bottom of the first page you will see Heart/Cooper's Cause. To even be sweeter, she had made me the bracelet as a gift. Thank you Jenny, you really touched me today with your generosity. So please check out her website, not only for Cooper's Cause, but also for great gift ideas for Christmas! I have also added her link to the side of my blog in case you want to come back and visit it later!

I NEVER KNOW WHAT IS NEXT....

Friday morning I went with Raelynn on her field trip to the pumpkin patch with her preschool. I think it would have been fun but it decided to rain, I mean down pour! We got caught in this little out building and it would not stop raining. I actually called Terry to come and get us from the building and take us to the car. He was sweet enough to do it but it let up just a little so we made a run for it. Unfortunately it didn't let up enough because Raelynn and I were soaked and muddy. We headed home afterwards to dry off, clean up and then I headed back to work and Raelynn to Lisa's. Raelynn was not overjoyed with the day :) ! The good part was this cute picture I captured of Raelynn with her classmate Jackson. I really like Jackson's Mom, she is a sweetie and Jackson is such a cutie!!!

Friday night I actually decided to take both kids to Late Night without Terry. (He was reffing football) I was pretty sure I had lost my mind and was crazy but things couldn't have gone better! Raelynn had her swimming lesson at 5:45pm so there was no way I would get there early. A friend of ours, Julie, was nice enough to offer to save us seats though. So we headed up right after her swimming lesson. We were all dressed in our KU attire, Cooper included. We parked 3000 miles away (small exaggeration) and I managed to carry both kids, the diaper bag and a bag full of canned goods the whole 3000 miles. It actually wasn't that bad. Raelynn did great and did walk with only a little complaining. Once there we had a great time! We found Julie and she had the perfect spot. She took Raelynn right into her arms and entertained her the whole night while I held Cooper. We had such a good time and Late Night itself was fantastic this year. I was very happy I had gotten earplugs for Coop because it got crazy loud!!! Raelynn and Cooper were so good and had so much fun. They both were entertained the entire night. We left just a little early to avoid the crowds. The kids were more than happy to get to bed when we got home. One of the noisiest times of the evening was when they unveiled the Championship Banner. It was amazing!

Saturday was my "get stuff done" day and I am happy to announce that all Thank Yous for Cooper's Cause Events are done!!! I had no idea how many thank yous I would write in the past few months. It was all worth it. Me writing a few hundred thank yous is the least I can do for all the support we have received. We are truly blessed to live in this community and have the family and friends we do. We will be forever grateful! Also on Saturday Cooper got his first real bruise. The boy will not hold still these days and was trying to stand up against some drawers in the kitchen. The drawer closed and there fell Cooper. He got a small bruise under his right eye but you would have thought he cracked his head open the way he cried. I think it hurt his pride more than it caused any physical harm. He is getting very proud of his accomplishments and equally upset with his struggles.

Tonight has been an up and down evening. First the sad news, the bathroom that is so cutely decorated that I have moved the kids into but kept so perfectly decorated now is starting to look like a used daily bathroom. I had to move some of my decorations from the counter to make way for Raelynn's new rechargeable toothbrush. I was so sad to take the cute decorations downstairs to be stored with the other cute decorations there is no longer room for. The good news is Cooper has decided to eat. Yes, just that quickly he decided food is not such a bad thing. When we first got home he and Raelynn had a sucker. He ate it like a pro. Then while we had dinner Cooper ate an entire jar of sweet potato baby food. Stacy at Tiny K had recommended we put the whey protein or vegetable oil in the food to add calories and that is just what I did. He ate the whole thing down then proceeded to drink another 3.5 oz of milk. I am going to start feeding him 3 meals a day. Can you even imagine if he starts eating like a normal baby and starts gaining weight? I feel like this will be a huge step forward. It has been over 5 1/2 months since Cooper has ate "normal". I am so excited. I am not overly excited with the added laundry but will happily clean up any mess!

I got a call from Steph today and she is coming up for the weekend!!! Yeah!!! She will be here for my birthday and I am so excited. We have no plans but it will be nice to have her here!

COOPER SCARE...

Tuesday we saw Dr. Kelley, Cooper had lost 5oz. I was so shocked. He had been eating and drinking so well. I was very disappointed but Dr. Kelley explained to us that it will take approximately 3X as many calories per kilo of weight for Cooper to gain weight than it would a normal baby. Therefore, even though he is actually consuming about what a normal 11 month old would be, he is loosing weight because his body (heart) is working so much harder. In addition, he is getting so active. He is all over the place and very close to walking. He never wants to sit still these days. We are up to 2 tsp of Whey Protein and 2tsp of Carnation Instant Breakfast in every 8oz bottle in hopes that this will give him extra calories. He is also starting to eat some "solid" foods. He eats 1/2 to an entire container of baby food in the morning and then has 5 to 10 bites mid day and about the same at dinner. Dr. Kelley did warn us though that we did not want him to start eating so many "solids" that he decreased his milk intake because this is where he is getting the most of his calories. So now that we have pushed and pushed trying to get him to eat, we also have to be careful he does not eat too much! It is crazy! I did ask Dr. Kelley about our supplies for feeding him by NG Tube and he said I could return them because at this point if we have to do something it will be the G Tube. We will not worry too much unless his actual volume of consumption decreases. I was really disappointed about his weight loss but hopefully he will start to gain soon.

Tuesday night when I got home I went out to get the mail and had a package from my Aunt in Alaska. She had told me she was sending us a scrapbook but what she sent was much more than a scrapbook. I opened the package and sat right down on our kitchen floor with Cooper and Raelynn and browsed through the memories she had captured. She actually took this blog from the first entry I made after Cooper's arrival all the way through the 4th of July. She inserted pictures and accents and it is amazing. I read it that night and the tears just ran down my face. Rereading it just reminded me of how scary and hard it all was and how fortunate we are. This was an amazing gift. I cannot wait until Cooper is old enough to appreciate it too. It will definitely be treasured and I am so grateful for her time and effort and thoughtfulness. Thank you Aunt Wilma!

Wednesday morning by 8am Cooper was still sound asleep and we hadn't heard a noise from him since we had put him down at 9pm the night before. I have to be to work by 8:30am so I went in to wake him and get him ready to go. As I picked him up I notice a purplish tint to his lips and as I started to undress him noticed his hands were purple. My stomach sank. I first pretended not to notice and just got him dressed, gave him his meds and fed him. Terry was still in the shower so I hollered good-bye and headed to Lisa's. When I arrived I asked her if they looked purple to her, with no hesitation she agreed. I called the doctor and since they had just seen him the day before they really felt every thing was fine but we were headed to CMH that afternoon for his pre admission appointment for his MRI so they said to have them check his SAT level. We explained the situation when we arrived there and they took his SAT level. It was at 83 which is pretty normal for Cooper who usually is at about 85. After seeing the anesthesiologist they concluded that because of his poor circulation he was probably just cold and therefore led to the discoloration. The same thing happened this morning too so tonight we have turned on the heat, he is dressed in a very warm sleeper and I tucked the covers all around him so he could not kick them off. When I head to bed if it is a little cool I will turn on a heater we have in his room as well. I do not like seeing him purple. It literally makes me sick to my stomach. After reading back through the scrapbook my Aunt made and the scare of the purple hands, I felt very sad walking into CMH for his appointment Wednesday afternoon. I could not help but think about the fact that in 6 to 8 months we will probably be back there for yet another open heart surgery and I am still far from ready. Just thinking about it now the tears come to my eyes. I don't know what my deal is, I have never feared or dreaded anything like I do our next stay there. I think I am so scared to loose him now. He is such a little person now with his own personality and he is everything, just like Raelynn is everything, and your kids are everything to you. I never think about loosing Raelynn but fear loosing Cooper daily. I really try not to think about it or dwell on it but when I think about actually facing another open heart surgery I cannot avoid those thoughts. And then there is the whole ECMO thing. Even at our appointment one of the nurses said, "I can't believe he is an ECMO baby." We know now how grim things are when your baby goes on ECMO. We know that outcome is not in our favor. We know we are the lucky ones. Would you want to play those odds again? What if it comes to that again. I didn't know then what I know now. I don't know if I could sit there day in and day out waiting...just waiting with nothing to do and nothing to think about except the fact that Cooper is on ECMO and could we be so lucky to survive ECMO a second time. In the past I always said I want to know everything. It is what I don't know that I fear but in this case, not knowing the severity of the situation was much better and now I do know and therefore I am terrified. I still have several months to get past this and I will, for Cooper I will. Anyway, the MRI is set for October 28th. The anesthesiologist did say however that the littlest runny nose will keep us from doing it so unless Cooper is 100% the procedure will be rescheduled. I know we need to get this done and I will not prolong it unnecessarily but honestly I would not be the least bit upset if it is rescheduled.

On a lighter note, I now have a facebook page. I know nothing about it nor will I ever use it but I have it. I am determined not to get old and out of touch. Jill signed me up and I think I have 3 friends as of now; Jill, Steph and an old aerobics instructor I knew. I like this blog much better :) Also, Terry and I met with a funeral home to preplan our funeral. I know this sounds crazy but after going through this experience, I don't want my kids, Terry or I to have to worry about it if something should happen to one or both of us. It is really simple and I feel like we are doing such a good thing. My death I have no problem with, it is the death of those I love that I struggle with. My next step is to set up a will of some sort. That will be the next subject I embrace and learn all about. I wonder if I will ever run out of things to do and learn or projects to complete. I can't imagine how great it would feel to be able to sit down and relax and truly feel as though you have nothing to do!!!

WHAT A BUSY WEEKEND....

This weekend was crazy!!! My family got to our house sometime around 2:30 am on Saturday. I didn't even hear them come in and therefore did not even greet them until I got up around 6am. I know I am a great hostess! Anyway, I got up and did my usual morning thing.....run, sweep the floors, do a load of laundry, clean up a little, eat breakfast etc. Finally around 8am people began to wake. Cooper and I headed out around 10am for his first haircut. His hair had little "flicker dillies" all over. I told Demetria to cut it short so I could spike it up and she did just that. He looks soooooo cute. He did pretty well too. The funniest thing though is when Demetria was cutting around his ear, Raelynn would hold his ear down. I guess she thought since they were sticking out she might cut them too.

From there we ran errands to get ready for Sherri's Surprise Birthday Party. Sherri knew nothing at all about it. Cassidy had called me weeks ago and asked that if they came down to the pumpkin patch, which is a family tradition, if we could have a surprise birthday party for Sherri. Of course I agreed. Late last week we found our she was coming so we had some work to do. We invited friends from Bonner and family. The plan was to go to the pumpkin patch around 3pm. Then about 5pm I would fake one of my migraines (I get really severe migraines and get very sick so it would be a given that I would have to leave the pumpkin patch). Steph and Cody offered to take me home because they had played that they had to return to Manhattan that evening anyway. Therefore we got back to the house to set out food, decorate and change clothes to be ready for guests by 6pm. Then Mom, Sherri and Karli were to stop off at the Buckle to get some jeans for her birthday. They were to get to the house around 6:30pm. Everything worked perfectly. Sherri was soooo surprised and had a wonderful time. I was so happy to see her smile, laugh and enjoy herself so much. The only sad thing was that Raelynn really thought I was sick and I guess got pretty upset. I felt horrible. She got a big smile on her face when she got home and saw I was ok. She is so sweet. After the party Mom, Sherri and I headed to the Ranch for a night out. First, I have never seen my Mother have a drink and she actually had a few. I was shocked! She also got drug out to the dance floor which was hilarious. I don't know it was just a different atmosphere to see her in and it was a good time. She couldn't text Steph fast enough though to come pick us up when Sherri finally said we could go. Sherri had a great time too. I don't think she sat out a dance once she got started. The whole night was just a fun night of laughs and I was so happy it turned out to be a great birthday for Sherri.

The pumpkin patch was fun as always. There is so much to do there. I was only disappointed that I did not get to enjoy the apple cider slush and cookies that is a tradition there because I was having to fake the migraine and of course I wouldn't want to eat or drink with a migraine. My Mom gave me a consoling hug long enough for me to whisper to her not to forget the jelly I buy there every year and the little pumpkin story book Raelynn loves! If Sherri had only known what we were planning at the time!




Sunday evening we headed next door to our neighbors for their son, Cayman's 2nd Birthday. Again, what a great time. They had a big bouncy castle and so many fun things to do outside. Raelynn played so hard we barely got her out of the bath and in bed before she was asleep. Cooper enjoyed himself too. He is getting so big and is just amazingly cute. Sunday he started being even more vocal. He babbled and babbled and babbled. We started to laugh at him and he would just giggle back. We are really starting to enjoy him. For the first time I don't feel like we are worrying about when his next feed is or next medicine that is to be given or when he will throw up again or if he is looking blue and breathing harder than normal. We are just enjoying our adorable little boy and it feels so good! We see Dr. Kelley again tomorrow for another weight check. I think Dr. Kelley will be happy with his progress. Wednesday we meet with Anesthesiology for the pre-admission appointment for his MRI which has been rescheduled to the 28th. We were suppose to also see the developmental specialist but they called today to reschedule. I was less than agreeable at finding another date because this appointment I do not look forward to at all. I feel like they will set Cooper down, spend 30 minutes with him and think they know exactly where he is developmental. I think our team at Tiny K and Dr. Kelley are a much better judge of how he is doing given that they spend much more time with him. Anyway, we rescheduled that for November 24th. I was not thrilled with that date either but had turned down 5 previous dates and figured they were getting a little annoyed. November 24th was Jean's birthday. I figure the distraction may be good but it will be a sad day either way. We have promised Raelynn that we will visit Nanni's grave on the 24th for her birthday and take her some pretty new fresh flowers. I think it will be good for us all.