NOTHING NEW WITH COOPER...

Nothing new really happened with Cooper today. We are still trying to wean him off the ventilator. Slow does not even explain this process. He is making progress little by little and is "waking" up more and more but I have a feeling he will be working on this for a few more days.

My Mom came over to day so that I could leave and take Raelynn to her friend, Maliya's, birthday party. Raelynn had a great time and it was wonderful to hear her laughter. When I told her goodbye tonight I just wanted to cry. She is so perfect! She is handling the situation wonderfully, she loves her brother like no other and she brings a smile to everyone's face. Sometimes she is my strength. I always say that I am glad she was our first child but the truth is I think God gave her to us first to help us stay strong for Cooper. I keep talking to people here and others and they all say he has a plan for Cooper and I am sure he does, but he has a plan for us all and so far I found the strength that I have needed exactly where he planned for me too.

My Mom struck up a conversation with a family this evening in the waiting room. This was a Dad, Daniel Bayless, of a little boy Granton. Granton has Severe Combined Immunodeficiency (SCID). Basically his body won't produce the the part of your cells that fight off disease. From what I understand, the only cures are either a cord blood or bone marrow transplant. Daniel and Mom , Jenni, have actually been told at times that their son would not make it. Miracles happen, Granton is still here. I have added their blog address with the others. Please read their story and pray for them and remember not to take one single little breath for granted. Thank you Bayless's for sharing you story with me and my family.

WE ARE OFF NITRATE....

Before we get to the Cooper stuff I have to make sure you are all keeping up on the additional links I am adding to the blog. Considering I have nothing else to do but occupy my time on the computer, the blog is getting a lot of attention. Please watch the right side of the blog. I continue to add links that give you additional information about Cooper and his care. Most recently I added links to each of the doctors caring for Cooper. Obviously this is just the main doctors and there are numerous others involved from RN to therapists to social workers but this is a start. I do want to mention though that there is not a link to my favorite intensivast, Dr. Tieves. She is wonderful! They all are but we have just spent a lot of time with her. I told her that she needed to get on CMH because there was no link to her and she said with a smile, "I like to keep a low profile." However, it is important to mention her even though I cannot find a link to her because she is so amazing.

Ok, so enough of that. Cooper is holding up like a champ! They have weaned him off the nitrate machine and the ventilator is next. Hopefully that will happen tomorrow. He stumbled a little when they took him off the nitrate but he has recovered well. It did however slow things down slightly. He is taking his feeds well but his tummy is still very large. They have mentioned that they may give him a suppository, poor little guy!!!! He is sleeping soundly now but he did do some wakening today. His eyes halfway opened and he just looked at me like he wasn't even there. It was a little scary at first but as the day progressed I got used to it.

Late this afternoon Amy came over for another visit. It was great. I talked non stop for about 4 hours but Amy pretended that she enjoyed the visit, hahaha! Thanks Amy that is exactly what friends are suppose to do. :) Sherri, Karli and Raelynn came to visit after Amy. I hadn't seen Raelynn for almost 2 days. She asked me if I missed my sweetie! How cute is that. Mom is headed up here again this weekend but won't be to visit until morning. I am glad she will be here.

So while I was posting this they came in and did decide to give Coop a suppository, yuck! First I made sure that was something they were going to do and then after they assured me I did not have to be involved I asked if I could watch. So considering Cooper has a catheter, I have not seen him without his diaper for awhile. Well lets just say his tummy is not the only thing that is swollen. Holy Cow!!! Of course I checked to see that this was normal and again they assured me it was. I told them that looked a little scary and they just laughed. Hopefully things will continue to move along with Cooper. I can't wait to hold him!!!

BABY STEPS....

This is the part where I have to be patient, not really one of my strengths :). Cooper is still doing well. Yesterday nothing really happened. They kept him sedated and I really saw no change. Today they have removed the pace maker wires from the heart and have shortened the drainage tubes from his heart. These are steps forward. Dr. Tieves said that we will push Cooper today. They are turning off the nitrate they started yesterday (really didn't do much). They have started backing down the ventilator. They had stopped feeds last night but will resume them again today. They have shut off 2 of his cardiac drips (medications) and are now just waiting to see what Coop does. They said they will push until he pushes back. So I guess now it is all up to Coop. Best case scenario we may be able to get him off the ventilator by late tomorrow. This is just a very slow process.

THE INFORMATION WE WERE PROTECTED FROM...

Coop is doing fine this is just a very long and slow process. He has a slight fever and are running cultures now to make sure he does not have an infection. They are giving him some nitrate to try to help his lungs relax so that the pressure in his lungs is a little better. So just a few manipulations here and there trying to get things as perfect as they can.

I did find out some things today some of which were a little scary and some of which are heartbreaking. In the next few months Cooper will have to undergo multiple MRI's and hearing screenings. We will also meet with a specialist that will review Cooper's development both physical and mental for the next 6+ months. This is standard procedure for those who have been on ECMO. With the ECMO itself and the amount of drugs they are given there can sometimes be adverse affects. They do not foresee anything with Cooper as his head ultra sounds were all fine but it is still recommended. That information was scary enough but what else I found out was even worse. Only about 50% of kids that go on ECMO survive. In this past week here of the 4 patients on ECMO only 1 has made it, Cooper. There was this little boy that was a couple rooms down from us who was being taken off ECMO the same day Coop was. He was the first case that day. We had jokingly made it a little race to see who was going to be taken off first. When he returned I asked if he got off and they said yes. I was very excited and said that means it is a good day and was good luck for Coop. Then the next day he was gone and I had asked if he got to go to go to the "floor" which is the 4th floor where you go before you go home. I was told yes and I had said how happy I was for him. Well today I found out he did come off ECMO but he did not survive. No one had wanted me to know because they knew I had already seen one patient pass and they try to protect us from that. I felt so sad inside but also so lucky. We are very, very lucky to still have Cooper fighting his way through. Reality is we are one of the lucky families. So again I will ask for your continued prayers and for prayers for the families who are not as fortunate as we are.

CHEST IS CLOSED.....

Ok, his chest is officially closed and that went well. Now there are several adjustments being made in regards to medicines and the ventilator. Today and tomorrow will be full of ups and downs and several adjustments. They have began the drugs to help wean him off the morphine. They will also begin small feeds through a feeding tube to see how his tummy handles it. His stomach area appears very swollen and tight. They said his liver is swollen and his stomach appears to be full of gasses. The swollen liver is apparently very common and they hope with the feeds both will improve. The rest of his body looks good and pink! He is doing great and we are just waiting to see how his body adjusts.

Thank you all again for everything. I love the comments, emails and texts we receive. It is like you are all right here with us.

ONE STEP CLOSER...

Well this morning has started off great, they are currently closing Cooper's chest. This is another huge step forward and once again I feel so happy yet anxious. My favorite attending is on today, Dr. Kelly Tieves. She is awesome. She said that we will start waking Coop up today. (She calls him Coop too, she is great) It has been 8 days since I "saw" Cooper and although I realize there are going to be challenges to face once he is awake, I can hardly wait!

I FORGOT TO MENTION....

I was so excited from being with my daughter and how well Coop is doing I forgot to mention something very important. I received an email today from our friend, Isaac. It really touched my heart. Last night Isaac took time out to give Coop and so many others a fantastic gift. He donated blood. That may sound simple to most but let me just give you an idea of how much blood it has taken to help save my son's life. On 1 day using the ECMO machine Cooper used 6 units of blood. A person usually donates 1 unit of blood when they donate sometimes a little less. Cooper was on ECMO for 6 days. During surgery he is given probably twice that given on an average day on the ECMO. Cooper is still receiving blood daily but it is down to 1 to 2 units. Therefore, in the 8 days that we have been here Cooper has received somewhere around 45 to 50 units of blood. That is approximately 45 to 50 people donating blood!!!! And we are not done yet. As you can see, it is sooooo important. Isaac was also good enough to share the following link you can go to for locations to give blood.

www.savealifenow.org/services/hours-locations.php

Thank you Isaac for being so thoughtful!!! Thanks also to all of you who currently give and have given in the past. We thank you!

OUR DAY AWAY.....

What a fantastic day! Sherri came over to sit with Coop while I headed to Bonner to pick up Raelynn. I left around 11:30 am and have to admit that I stopped long enough to get my nails done. I felt guilty the whole time but also felt great! I picked Raelynn up after that and we headed home. We talked the whole way home and caught up on what had been going on in Raelynn's mind. That is always so much fun. We got home and Raelynn had a little snack. Terry stopped by so snack time ended abruptly and it was on to Daddy time. Terry was crazy busy with work today so was only able to stay a short while. After that I put Raelynn down for a nap so I could get everything I needed done. She was not to anxious to sleep but finally dozed off. I was able to do laundry and repack before she awoke. We shared a Lean Pocket and some chips and again just chit chatted away. Boy how I had missed those talks. We loaded the car and headed back. Raelynn insisted on stopping for Ice Cream and I am such a sucker right now I give her whatever she wants. We had ice cream and could not stop laughing at each other because Raelynn got IC on her nose and her tongue is so long she licked it off!!! I guess you had to be there, hahaha! Anyway, we sang songs and car danced all the way to the hospital. She just makes everything so fun and I remember again why my heart misses her so much when we are apart. We got back to the hospital and Coop had done wonderful why we were gone. Dr. O'Brien had been by and it sounds like the plan to close his chest tomorrow. Yeah!!!! We will get the final assessment in the morning to make sure he is ready but things look good. Things will move pretty quick from there. I just feel so good; this is when I start to see light at the end of the tunnel and it feels great! I told Terry to stay home tonight as he is helping with a job anyway and wouldn't get here until late. He has been great to be here as much as he has. The holiday weekend really helped. Anyway, things are finally looking like Coop is going to be ok and I cannot express the way that makes me feel today. Things have been very rough for Cooper since his original surgery and I know we still have a ways to go but the outlook has drastically improved!

Oh yeah, a couple of funny things about Coop. Because of some things they had attached to the sides of his head that now have been removed, he has no hair left on either side of his head and the back is just peach fuzz from laying on it so long. Therefore our son looks like he has a toupee on his head. Also, the nurses have been working very hard to pin Cooper's ears back with IVs and other tubes. If all goes well maybe he will not look like dumbo by the time we leave!

ANOTHER GOOD REPORT.....

Things are going great this morning. He remained consistent last night and they have gotten his blood sugar under control. They are starting to adjust a few of his medications and move forward. We are now just waiting to be able to close his chest and that could happen in the next couple days. Coop still does not want to be asleep anymore and that is starting to become an issue. They will continue to keep him resting until they close his chest.

Everyone is recommending that if we need to get away today would be the day so Terry is headed back to Lawrence and I think once Sherri gets over here I will too. I am officially out of clothes so I will go back home to do laundry and repack and then will be back. Hopefully I can have a chance to see Raelynn as well. She is still doing great and accepting they way things are right now very well.

STILL GOING STRONG....

Cooper is staying strong and has had several visitors from Children's Mercy. Some of you may remember me talking about the wonderful nurse we had when Coop was born on the NICU; well we had told some of the nurses this time so they went and found her and reminded her of us and she came to visit. She was as sweet as before and I thanked her for being so great to us. I was really happy to see her and felt so good to thank her. Many of the nurses were here for a meeting tonight so one by one they have stopped in just to tell Coop congrats for making it off the ECMO machine. They are all so encouraging and they become a big part of your support group too. They are an amazing group of people. Coop's vitals are holding strong and once again he is trying to wake up. They want to keep him quiet tonight and not make him work too much so I told him to hang in there one more night. He is my son you know, sleep does not rank real high on the priority list for us nor does lying (sitting for me) in one place for 7 days straight. I just think he is getting bored and anxious too. Anyway, they are trying to keep him calm for now and are still trying to find a happy medium on his blood sugar level. It went from being 497 (much too high) to 59 (much too low). They will keep manipulating this and find something that works. So we are off to bed....well this recliner chair, hahaha! Keep the positive thoughts and prayers coming for tomorrow!!! Thank you all again!

HE IS DOING GREAT!!!!!!!!!!!

You have no idea how excited I am to report Cooper is doing great! He is off the ECMO machine and looks fantastic. His HR (heart rate) and blood pressure are fabulous and his blood sugar is finally coming down. He is pretty puffy but they say that is normal and nothing to worry about. We have been back in the PICU for awhile now and Raelynn, Karli and Sherri have also been back to visit him. Cooper will remain sedated for the next few days while they wait for some of the swelling to subside. I believe tomorrow they will give us a little better idea of the game plan. Basically what we are thinking is that we have 2 to 5 days before they close the chest and pull the drainage tubes. Then we will start dealing with the withdrawal process which completely depends on Cooper. Every kid is different. He also has to be taken off the ventilator which can sometimes take some time for them to start breathing on their own. He will also have to start eating again. So as you can see we still have several steps but who cares right now we are celebrating how well Cooper did today. He is such a fighter and I finally feel like I can breathe again!

COOPER IS IN SURGERY AGAIN....

Cooper entered into surgery at about 12:10pm. He did not go willingly though. Everyone was there; doctors, nurses, respiratory therapist, anesthesiologist, everyone getting Coop ready to transport to surgery when all the sudden his blood pressure and heart rate sky rocketed. I stepped out of the way and several others stepped up to see what was going on. The tears started again. They assume he got a bolster of heparin that was just sitting in the line and when they moved it, it rushed into his veins. They determined he would be fine and his stats began to return to normal. Everyone is so kind. Of course we are seeing the same people so they give us hugs and promise to take good care of him. They are so wonderful but still this is not getting any easier. In fact it seems to be getting harder and harder. I feel like I could throw up any minute and I do everything to keep from crying. He has to get better soon! Terry struggles too. I look at him and tears sit in his eyes as well. I knew people have been through much more than we have but I have no idea how.

Well they just came in and gave us an update....Cooper is doing great. They have had him off the ECMO for about 10 minutes and he looks great. They think they are going to leave him off but they need to watch for a little longer. All we can do is cry. We were/are so nervous for him. He is such a fighter but things have been rough for him. Maybe I can start thinking about the day I can hold him again. I know, I know one day at a time, one step at a time.

I read yesterday the following and it seems so appropriate and I just keep trying to remind myself of it.

"Life isn’t about waiting for the storm to pass; it is about learning to dance in the rain”

ON TO EXPLORATORY SURGERY....

We made it through the night and let me assure the last 12 hours were very long. For the first time we had a nurse I was not crazy about to put it mildly. We did not get along from the very beginning. She was just here to perform her job and put no emotion nor wanted to know anything about Cooper. I could go on and on but I will spare you all. The important thing is that Cooper survived and is still on schedule to come off the ECMO machine. We are the second procedure for the day so we will probably be going into surgery around 10:30 am. Everything is looking pretty good. We are still fighting the blood sugar issue and his blood pressure is a little low but nothing alarming. If all goes well, Coop will come out of surgery off the ECMO.

Thank you all once again for your love and support. We are so thankful for you all!!!

UPDATE ON THE PROCESS...

Everything is going really well. His blood sugar is still high and they are still trying to figure that out but not a big deal yet. So far his body is accepting its responsibilities well. Things will start to get a little more hectic now as they wean his down more and more. I am attaching a link to the blog that will give a description of the correctional surgery they performed. This description is close however there was no valve or conduit placed in Cooper.

Bonnie was over to visit today and broke up our day a little bit. We greatly appreciated the visit. Terry actually turned down an invitation to play golf. I think that may have been the first time ever, ha ha ha.

Thank you all again for the tremendous support and please keep praying for Coop.

THE WEANING PROCESS HAS BEGAN....

Today we started weaning Cooper off the ECMO machine. Every hour they turn the machine down and every 2 hours they pull labs that tell us how he is doing. So far so good! I am so nervous I can't sit still. Everyone is so optimistic I hope they are right!!!! We will continue with this all day. If all goes well then around 10:30am tomorrow morning they will take Coop in for exploratory surgery. This surgery will revisit the heart and make sure everything looks great. Then they will completely take him off the ECMO machine. They will then remove the cannula's, which are the tubes that are currently taking the blood out of his body to the ECMO machine and then taking the oxygenated blood back to the body. They will also rebuild the arteries and veins in the area the cannula's are in. The chest will remain open to compensate for any swelling that may occur. Up to this point we were able to pull any excess fluid off through the ECMO machine. Basically, once Coop is off the ECMO it will be like starting back where we expected to be right after surgery. So today will be a wait and see game and then tomorrow will be another day in surgery. I will try to keep everyone up to date throughout the day.

HOUR 91............

Today I am more nervous than I have been for a few days. We will start trying to take Coop off the machines tomorrow. My stomach is in knots. It is the way I felt before my 1/2 marathon or the way I use to feel before a big game. You want to do so well and have prepared and rested but only time will tell how things turn out. Coop has been giving us many encouraging actions though. He has been trying to take breathes on his own and there are pulsations from his heart. They had to double his sleepy meds though because he just would not stay asleep. Even after doubling the meds he still wakes up from time to time. This morning, Michelle, Coop's nurse was washing his hair and he got all fired up. He started moving like crazy so I stepped up to hold his hand. I leaned down to kiss him and whisper shhhhh to him and he opened his eyes. I about had a heart attack but it was like he knew we were there. He also has started coughing from time to time trying to get some of the mucus out of his throat. The sad thing is his face gets extremely red and you can tell he is crying inside. It is sad but yet reassuring to know he is still very much alive in there.

Yesterday went well. Tom and Jan were over to visit a little before noon. It was great to see them and for them to see Cooper. Jan and Janna have being going to church and lighting a candle and praying for Cooper. I love that! It means so much to have so many people praying for him. We had a nice visit with them and then Mom, the girls and Raelynn came over. They brought me taco salad which I was very excited about. I am about sick of the food here. We always eat breakfast but after that I don't care if I eat or not. However the idea of fresh yummy homemade taco salad made me very hungry! Raelynn is crazy ornery. I think Mom is a bad influence. I found out that my daughter has been having ice cream even before lunch, candy more than occasionally for snack, hot dogs whenever she asks for them, and who knows what else. I told Terry it is going to take us a month to whip her back into shape. Even with that though she is still so cute and funny. Before she left she was telling Grandma she could not have any more junk to eat so maybe it will get a little better. Mom and Steph head back to Scott City today and Karli is staying behind to help with Raelynn. I am so thankful for them. It helps so much having them here. Terry plans to go to Lawrence today to take care of a few things at the store and then mow the yard. Sherri, Karli and Raelynn will come for another visit today before things get going tomorrow. As Dr. Allen (the attending MD on the PICU) explained to us, this is like a plane ride. The take off and landing are the rough patches, the in between is a smooth ride. The surgery was our take off and tomorrow we will begin out descend and we can only pray, hope, wish, beg and dream of a smooth landing.

GOOD NEWS.....

Well things are just as they have been for the past few days. Cooper remains on the ECMO machine and the ventilator. He will remain like this until Monday and they have said tentavily they will begin weening him from the machines on Monday and we will see what happens. The good news is that they are seeing pulsations from his heart which means that his little heart is getting stronger and trying to beat on its own. This is great news and makes us a little more hopeful for Monday. Other than that there is no big change.. They continue to try to balance the amount of fluid entering and leaving his body and try to keep his blood count up. Coop continues to attempt to wake from time to time and the nurses are thankfully quick to administer additional meds. This brings the only "bad" news. We did find out yesterday that Cooper will be "addicted" to the morphine and there will be a period of withdrawal he will have to go through. It is necessary though for him to have these meds so it is just another step we will have to go through but I feel horrible for Cooper to have to go through another challenge. We will continue to take things one day at a time for now.

ENTERING HOUR 53....

I have been here way to long as I am starting to use hospital terms. Hour 53 is the hour we were entering at shift change which is 7 to 8 every day. That means Coop has been in the PICU for 53 hours. He is doing fine however they are having a hard time keeping his blood count up and he looks pretty pail. This morning they discovered some blood pooling in the chest cavity between the heart and the lung. They took X-rays at 10am and decided that it wasn't getting worse so they decided not to perform a procedure to drain the access blood. They said that the fact that they are having a hard time keeping the blood count up usually means there is some bleeding somewhere and it could be this blood pooling in the chest cavity. The doctors have not rounded yet and although the nurses are discussing the issue they do not seem overly concerned. We will see how this progresses. Other than that he seems to be doing about the same. He is still a little stinker and occasionally will start to move around. It is as though he wants to get out of here. They will try to reposition him and he will move right back where he was. It makes us smile.

Jill came over this morning to visit. It was great to see her and catch up a little on life at Farmers. She made me laugh as usual and asked the nurses a million questions, it was great. I know Little Dumbo (as Jill likes to call Cooper) was happy to see her as well. Mom came over late morning and stayed with Cooper while I picked Raelynn up and we went home to do laundry and pack some more clothes. Sherri and Karli joined Mom around 2:30pm and Steph came with Raelynn and I. As always Raelynn made me laugh and smile all day. When I woke her up from her nap to head back to the hospital she said, "Mommy you're still here!" and gave me a big hug. I could hardly keep from crying. I reminded her I am always there for her we just have to share some time away right now for Cooper. She said she knew and then wanted to get to the hospital to see Coop. So we headed back and she visited him. As always the two of them just seem to connect. She gave him a kiss and whispered something. I didn't hear what and I asked her what she said and she told me she was talking to Baby Cooper. :) I cannot wait until I can watch them play together and love on each other again. I just keep thinking how incredibly wonderful the first night back home felt back in December. I remember putting both the kids to bed, Raelynn in her room and Cooper in his bassinet. I remember laying down in our bed and just thinking how absolutely perfect it was! We have only been here for 3 days and I find myself wondering how I will make it for several more days but I know I will and the reward will be worth every second we spend here.

THURSDAY UPDATE.....

First I want to say thank you. Thank you to all the visitors, texts, calls, emails, blog comments, thoughts and prayers. I cannot tell you all how much difference it makes to hear the encouragement. Last night went as well as could be expected. They started giving Cooper some "beefed up" blood, meaning blood that had been enriched. Other than that they just continually took labs and monitored him. This morning Dr. O'Brien and Dr. Kaine (surgeon and cardiologist) were both in and basically told us it is just a waiting game. There is no magical number of days he will remain like this or any particular thing they look for to decide when to try to take him off the machines. It is all just time, time for his heart and lungs to recover. Dr. O'Brien is leaving for the weekend and won't be back until Tuesday so he thought they would wait until late Monday or Tuesday before they tried to take him off so that if it does not work and they would have to take him back into surgery he would be here. So that is the game plan. Today Cooper started to wake up about every 2 hours and they had to give him additional "sleepy" medicine and even eventually had to give him meds that paralyzed him. When it first started happening I freaked out because I was terrified that he was in pain. They assured me he may feel a little discomfort but no pain. Tonight they are finally starting to get him under control so that he is not waking. They have given him extra calcium and potassium. They also have began "feeding" him with lipids and other nutrients. They have had to give him quite a bit of blood and extra platelets. All in all though they have said he is doing good. But really what can he do wrong when machines are doing all the work!

Today in the little cubicle next to us there was another cardiac baby. He was also Dr. O'Brien's patient. All the sudden there was craziness over there and they came over and shut our glass door but I could still see. Several people went in and then the Mom screamed with cries and one by one people came out. Her baby died. There was this big lump in my throat and I just couldn't quit watching. I kept asking my nurse what happens next and so they told me. They let the Mother stay there with her baby as long as she likes. The clean him/her up the best they can and they disconnect all IVs and whatever else their may be. Then they even let them give the baby a bath and dress him/her. I couldn't imagine....I don't want to imagine! I just wanted to hug the Mom but of course I stayed put. Then Dr. O'Brien walked out. Our eyes met and you could just see his sadness. He looked at me for a long time and then gave me a soft smile as if to say he wished I had not just seen that. I can't seem to get it out of my head! I just keep thinking how quick it all happened. I don't know what exactly was wrong with him and have not asked, I don't want to know! However, I do know he was a cardiac patient and that alone terrifies me.

Today went by really fast!!! My family came up last night and got to Sherri's around 10 pm. They came over to the hospital this morning and it was soooooooooooooo good to see them. The best part is they brought Raelynn! She gave me the biggest and tightest hug ever and I knew it was going to be a better day. We just couldn't quit hugging each other. I have missed her even more than I realized. So for a big part of the day Mom and the girls were here to keep us company. Then Lisa came to visit and it was a great surprise. Raelynn was super happy to see her and I know Cooper knew she was here too. Late afternoon they all left and my friend Amy came. We caught up on each others lives while we stood by Cooper keeping him company. We ate dinner together and now I finally am sitting down long enough to update the blog. It was really a good day and great seeing everyone! So now it has quieted down and I have caught up on the daily nurse gossip :) We really have been here too much that we are in on the gossip! We will keep things basically the same tonight and tomorrow. As always please continue to pray for a little fighter but tonight please also pray for the Mom whose little fighter gave up the fight today.

WHAT NOW......

Where do I begin.....well Cooper finally got out of surgery around 5:00pm or so. Sherri had came over to sit with us and it was nice to have someone else there while Coop's 5 hour surgery turned into a 10 hour marathon! It took a little while for them to get him ready for us to see but about 5:30pm we were able to see him. I thought I remembered what it was like to see him for the first time after surgery but obviously I didn't. Walking into the little area where he is was crushing. There he lay completely lifeless with machines and more tubes coming out of him than I want to think about. I don't remember a thing they said to us, all I could do was stand there and cry. So that is what I did, stood there and cried, until about 8 pm. Tatum came to visit and stood and cried with me for awhile, thank you Tatum!!!! Your face and hugs really helped remind how lucky we really are to have such great family and friends. I finally choked back enough tears to ask what everything is and how Cooper really is doing. This is what I found out.

Cooper's lungs are working fine and the heart surgery went well. The problem is that the lungs don't seem to understand that their job is to take in the blood, remove the carbon dioxide, give it oxygen and send it back to the heart so the heart can pump it to the rest of the body. Understand that for 6 months not only has Coop's heart not worked properly but his lungs have also been altered. So the plan is for Cooper to stay on a machine called and ECMO and a ventilator. The ventilator obviously breathes for him and the ECMO takes the blood from his heart into this crazy big machine which takes out the carbon dioxide and puts in the oxygen and then shoots it back into his body. Right now his blood pressure and respiratory rate are virtually non existent because the machines are doing all the work. They also monitor his bleeding because he is on a very powerful blood thinner so the blood won't clot in the machine. They will do a sonogram on his head daily to make sure there is no bleeding and will also monitor his organs. We have been told by the nurses that the average time on the ECMO is 5 days to 2 weeks but they have one 8 month old right now that has been on for 3 weeks. I guess we will take it one day at a time. Cooper is being kept completely sedated and his chest is remaining open. They basically want his lungs and heart to completely rest for the next few days.

What do I think of all this? My eyes burn, my head is killing me and I haven't eaten for over 12 hours so I don't know what I think, I will let you know that tomorrow. I am trying to stay positive and not get all stressed out or even think about the days and nights I will be spending in this little room or how once again I will miss my sweet little Raelynn who I have already been without for 5 days and just focus on my precious little boy who is resting peacefully but has quite a fight ahead of him.

KEEP THE PRAYERS COMING

The gas did not work so now on to Plan B. They will put him back on bypass and hook him up to a machine that his blood will pump out to, then the machine will remove the carbon dioxide and then pump it back into his body. He will be on this machine for a day or two and then will return to surgery where they will take him off of bypass and this machine and see how he is doing. This will give his lungs a little break with hopes that once they have rested they will work as they should.

How are we doing? I am on my second box of Kleenexes and I want to run out of here. Terry is hanging in there like a champ. As before, please please please keep praying for our little boy!!!

LITTLE SET BACK

The repairs are complete and they have taken him off bypass. The repairs look great but he is experiencing pulmonary hypertension. This mean his lungs are having problems getting their act together. They are giving him a gas that is suppose to relax the lungs enough to then allow them to start working properly. It is like they are a little stressed out and are restricting any blood to flow into them. They will give it about an hour to see if this gas will work and if not will move to Plan B. I will explain Plan B if it comes to that. Pray that this works, I don't like Plan B.

6 HOURS AND COUNTING.....

Not much to update except that things are going well. They have completed closer of the VSD and are almost done with the the reconstruction of the conduit and channeling of the aortic artery. We are getting there! Thank you all for your prayers!

ENTERING HOUR 4....

Well Cooper has been on bypass for awhile now, he went on it shortly after my last post. The nurse was just out and said they are finished removing scar tissue and are now cooling him to begin the reconstruction. (Now I am giving all details here and hope I do not freak anyone out.) They are literally dropping the temperature in the room to very low temperatures in order to drop Coop's body temp. This slows the body's function which is necessary to do the procedure. Machines are literally keeping him alive right now.....I know I am crying too. Anyway, the good news is they are continuing with the reconstruction. Cooper does not appear to be too small to do the reconstruction so they are moving forward. This is great news and the nurse says he is doing just fine!

Thanks for all the comments and texts. I really appreciate them all. It gives us something to do to read them and makes us feel like you are all right here with us!

HOUR 2 UPDATE

The nurse was just out and things are going well and as expected. They have entered the chest and are currently still removing scar tissue. This is a very slow and tedious process but I guess normal for the 2nd surgery. They have not yet put him on bypass. I will keep you all posted.

WE ARE HERE AND COOP IS FAST ASLEEP

Well we arrived this morning at 6am. We started the admission process right away. I confirmed that Dr. O'Brien was feeling good and they assured me he was. The anesthesiologist was a very nice sweet guy that promised to take good care of our baby. He did not cry once this morning. I wish I could say the same for Terry and I. Once he finally woke up I thought he would be very hungry but he seemed very content and gave us lots of smiles. We handed him off to the nurses at approximately 7:20am. The tears would not stop and are still hard to control. We just handed our baby over and literally his life is in their hands. We have already received one update that he is doing great. He is asleep and the ventilator is already in place. They were in the process of getting all the IVs inserted. This is going to be the longest 5 hours of my life!!!

SURGERY IS BACK ON....

I just got the call and surgery is scheduled for tomorrow morning first thing. We have to be there at 6am, Terry will love that! I asked if Dr. O'Brien was for sure ok because I want him on top of his game for my son's surgery. The nurse laughed and said absolutely that he would not do it if he were not better. She said he sounded horrible this morning but sounded much better this afternoon. Maybe he was hung over? Hahaha! It is just weird to realize the surgeon who is performing a complicated open heart surgery on your 6 month old son is human too. I would rather think he is not to tell you the truth. Just think when he has a bad day, no rather let's not!

YOU'RE NOT GOING TO BELIEVE THIS.....

So today's the day for Coop's surgery. I got up this morning and went running....last time I would be able to do that for awhile. It felt great. I got home and things were going very smoothly and we were right on schedule to leave the house at 8am to be there by 9am. Then the phone rang.....our surgeon is sick! What! Yep the surgeon was sick so no surgery for Cooper today. I have been so stressed about this and now one more day to worry. They are to call this afternoon to let us know what the plan is now. They said they know Cooper needs to get in right away so they will keep us informed. Well that's real reassuring! Anyway, as I have said before, nothing we can do and #$!@ happens! I wouldn't want him operating on him when he sick and I certainly don't want another surgeon because I think ours is incredible.

So let's back up a little. The weekend was so quiet and lonesome without Raelynn. I got so much done but I kept thinking I should be going to the park or reading stories or playing with bubbles but yet there was no one there to play with. Cooper didn't help either. He just sat wherever I put him and smiled and laughed at me. I kept thinking if he would be difficult then maybe I would be happy I only had one to worry about but nope, he was a little angel. Saturday Steph was so sweet to me, she called often throughout the day to give me updates on the events of her graduation and we sent pictures back and forth on our phones. It really helped a lot and she seemed to have a great day! Raelynn is having so much fun. We talk to her every day and I miss her more with each passing day. Again Steph and Karli have been great about sending me pictures of her. I cannot wait to see her!!! Sunday I was hanging up some of her clothes and I just started to cry. Can you imagine if kids knew what affect they had on their parents. The world would be a disaster! We made it through the weekend and Monday morning we headed to do the pre op stuff with Cooper. It went really well. We met with the surgeon, nurses, anesthesiologist, social worker and who knows who else but the were all fantastic. Coop had EKG, chest x-rays, lab work, etc. He did really well. Meeting with the surgeon was the best part. I felt much better after talking with him. He explained in great detail and in terms we could understand exactly what they would be doing during the procedure. For the first time I really understand everything. He was also very confident that they would be able to do what they needed to do. He also thought they may be able to close his chest right away instead of having to leave it open for a few days to compensate for the swelling. Anyway, everything was very reassuring and I felt very good when we left. When we got back Coop went to Lisa's and I got to go to work. It felt good to be "normal" again. Last night Tom and Jan came to visit little Coop and then Terry, Cooper and I hung out with the neighbors for a little while enjoying the weather. It all felt so good! Ornery Coop crawled out of his Bumbo last night too. He is all over the place these days. He crawled out of his swing a few days ago and now the Bumbo so I guess the days of putting him in one place and he still being there when you return is over. I love it, he is growing up and is just so darn cute. Well I guess that is it for now and I will keep you all updated as to the new time for his surgery! :)

RAELYNN IS GONE!!!!

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

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

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

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

HOSPITAL TIME

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

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

UPDATE....NOTHING HAPPENED!

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

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

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

CLOSER T0 SURGERY TIME

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

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

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





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





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

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