Woohoo

Coop had his second post-op cardiology appointment today. He had his first echo since Mayo and it looked fantastic!!! We received all good news today, yay! Dr. Cowley said that the there was trace tricuspid valve leak aka normal heart healthy function-this is ideal post-cone procedure results. He said the repair was amazing and that he couldn't be more pleased.

We feel so relieved and it all feels so surreal. We talked several times with Dr. Cowley about surgery and all our concerns. He was so reassuring this summer when we found out surgery was sooner than we expected. He said, "6 months from now you'll be coming in here and it will all be over and he will be doing great." That time he talked about was today! I feel like jumping up and down, but can't because it just seems so dream like.

Coop didn't cry or put up a fight with the echo, EKG, blood pressure, pulse ox or X-ray. I think he is starting to understand it all a bit more. For Christmas we get to be medicine free! Coop stops the beta blocker today and Sildenafil and aspirin December 18th when he is 3 months post-op. He got to pick out a good boy present and he decided to add another Melmo aka Elmo to his collection.

February 2011

February brought Cooper's heart surgery on Greg's 26th birthday. The hardest part of the day was Cooper was wheeling him down to the OR and handing him over to the anesthesiologist. We cried and cried like we never before. Waiting in the OR waiting room was pure torture. Every time the update phone would ring I would jump up and run over. We got several updates and finally got to speak with Dr. Burch, Cooper's surgeon. He told us when we met with him before the surgery that he would be very honest with us about how he felt things went, so when he told us that he was pleased with how things went I was ecstatic. Then we got to go see him in the CICU and that was when Greg broke down the hardest. Seeing him attached to more wires and machines than we had ever seen was almost too much to bare. The nursing staff in the CICU were amazing and assured us that he was going to do great.

The next several days were really hard between seeing him in pain, trying to extubate, and having hospital staff rush into the room to force breaths into him because he would forget to breath. We loved the nurses in the CICU. Michelle and Judy were are favorites. Michelle called Cooper Tarzan, because she thought he was so strong and big. Judy would play soothing Beatles lullaby CDs for him all night and share her candy with us. The Friday after his surgery he was moved to the floor to prepare to go home. He kept getting wires and tubes removed one by one and I could hold him all day! He was originally supposed to go home on February 14th, but ended up having feeding issues with aspirating and had to stay a few more days. We brought him home on February 17th and it was such an overwhelmingly amazing day. We were scared to death, but so thrilled to have him at home.

He cried a lot and I thought every time he did that something was wrong, but he was colic-y and was only happy being held in my arms. He would cry for hours at night, we tried everything to soothe him. Finally he would fall asleep around midnight. He did good at sleeping through the night unless his binky fell out. He was not allowed to drink anything until he passed his swallow study. The binky became our life saver! Three weeks later he had another swallow study and he was still aspirating on thin liquids, but not thick. We were able to gradually start giving him nectar thick milk. We had a love-hate relationship with the feeding tube and pump. We became experts at priming that pump and pumping his meds through. Until we clogged it with aspirin and had to go in the middle of a snow storm to get his tube pulled and replaced. No one told us not to pump aspirin in his tube!

This is him just hours after surgery.

One day after surgery.

Two days after surgery. 

Five days after surgery and on the floor.

The day he was going to go home a wireless baby, but decided he need the feeding tube just a little longer. 

Day we got to go home!

One day home and just got back from his first visit to his pediatrician. 

He had to wear socks on his hands because if not he was constantly trying to pull his tube out. 

February was really rough, but so much better having our boy home and on the road to recovery than driving to the hospital everyday to leave without him.

January 2011

I wanted to do a year in review at the end of 2011, but never got around to it. I still want to do that for memory sake and so here it goes.

January 2011-

This was one of the hardest and most joyous months of our lives. Cooper was born and that was an the most amazing experience. I was induced after going past my due date and not progressing. We showed up to Jordan Valley around 7:00 AM and I was so nervous. The whole birthing experience was so much better and easier than I anticipated. They got everything started and then we just hung out playing cards and watching movies. I got my epidural and that was so much easier than I thought it would be. I think I really worked everything up in my mind that it was going to be so so hard and then it was no where near what I had imagined (thank you modern medicine.)

It took a few hours to dilate to a 5, but once I got there I was to a 10 within a hour or so. Then I pushed for about an hour and a half. Greg was making me, my doctor, and nurse laugh so much that sometimes we would almost miss the contractions. After 12 hours of being at the hospital he was born! He had a head full of dark hair and was so dang cute, even with a cone head. He was born at 7:18 PM weighing 8 lbs 2 oz and 21 inches long. Greg was so happy he was laughing and I will never forget the look on his face as they were checking him over and cleaning him up. He was in awe of our sweet boy and my doctor said she had never seen a dad so happy to be a dad.

Within the first hour of his life the hospital staff knew that something was not right with him and took him to the NICU. I didn't think much of it and assumed it was something simple they could easily treat, I was so absolutely wrong. Later that night when I was finally able to go see him, I walked in to see him attached to all sorts of foreign wires and machines that I now know all too well. He was having an echo done to see if his heart murmur was innocent or something to be concerned about.

The Neonatologist sat us down outside Cooper's room and told us that he had something wrong with his heart. She was so cold and spoke to us as if we were her colleagues. We knew nothing more after speaking with besides that she was calling Primary Children's to transport him.

The life flight team brought him into my room to see him one more time and he was in an rolling incubator. It was so hard and so confusing, not knowing what was going to happen next. There was a nurse who said she would take good care of him and the doctor at the NICU would call us and let us know when he got there and what they were doing to him. She was our angel and she gave me a life flight shirt that was size 12 month and told me he would fit into it sooner than I could imagine. All I could think was that I didn't know if he would ever get to wear it.

My doctor discharged me the next morning so we could go to see Coop. We didn't know what to expect. We finally were able to see him and I fell in love all over again. I just wanted to pick him up and hold him and love on him. He was just laying in the warming bed with all the wires attached to him. The nurse was so sweet and made him a cute lion name tag and told us that he was going to be just fine.

Finally, cardiology came and spoke with us. They explained Ebstein's Anomaly and told us that whether he had to have surgery or not he would be home taring up our house in no time. I loved Dr. Cowley from that moment. He then told us what the plan was. We were going to see if he could go home without surgery, hoping that as his cardiovascular resistance came down in the first week of life that his oxygen saturations would maintain at 75 or higher. Until then he would be on prostaglandin medicine (PGE) to help keep his PDA open and then we would turn off the PGE and see how he would do. We tried three times over a three week period without success. He would be at 95 one minute and dip into the 60's the next. After the cardiology team met together they decided that putting a shunt in his heart would be the best option for him. On Monday, February 7th 2011 Cooper would have his Blalock-Taussig shunt placed in hopes that he would do well and go home and grow till he needed his tricuspid valve repaired.

Our lives in January felt like groundhog day. Everyday we would go to the hospital and cry and pray and hope we could raise our sweet baby. We were in such a deep despair. We felt angry, sad, grateful, disappointed, shock, and hope. We relied on one another like never before. When I was down, Greg brought me up and comforted me and vice versa. We never knew heartache like that before. It was so shocking to us because each appointment we would go to when I was pregnant we would listen to his heart beat and my doctor would always say something like, "What a strong heart!" or "He is a happy camper." We never imagined that something would be wrong.

He is so strong and such a spitfire. He is our fighter and I know he will continue to amaze us and give us the greatest joy we have ever known. He is our everything and we will never stop fighting this battle with him.

This was at the NICU at Jordan Valley. The blueness was starting to set in.

  At Primarys. Greg was so excited to bring him these two guitars that hang from his mobile. 

 We were so happy to put him in these guitar pajamas that the hospital had because he had the same pair at home. 

 This is one of my favorite pics of my sweet boy. I just could eat him up!

He was famous at the hospital for this hair. He was born a rocker and definitely gets that from his daddy. 

Health Update

At Coops 6 month appointment he was in the 30th percentile for weight and 90th percentile for height. He is going to be a baller. Of course he hated the shots but as I was cuddling him Greg turned Baby First TV on his phone and he immediately stopped crying. This boy is addicted to TV already. When we went to see Dr. Templeman it felt like years since we had been there and it had only been a month. But I guess that is how it goes when you go weekly or more to doctors appointments for 3-4 months. Cooper also had another cardiology appointment at the beginning of July. I was so nervous about it and emotional but it turned out really well. We went to see a new cardiologist and we are really happy with the switch. Cooper's sats were in the high 90's and his EKG looked great. Dr. Cowley said that sometime in the next 20 years he will have his shunt removed and probably his valve repaired. He also said that they feel confident that the valve is doing the majority of the work and that the shunt is just adding a little extra. Greg asked him what, if anything we should not let Cooper do as he grows. His reply was awesome, he said, "Just don't let him drive before he is 16."  He said he expects him to be able to do anything he wants and that he may be down for a few weeks when he has his next surgery and then he should be back to being crazy. One of my favorite parts of the appointment was when he was leaving the room and he said that Cooper was a success story. LOVE to hear that! We also ended up scheduling a swallow study the next day as recommended by Dr. Cowley. Coop did well with what little barium he swallowed. So he passed on thin liquids and has been off thick liquids for over a month. The speech therapist seemed a bit hesitant to say he passed because she wanted to see more swallows since he had been silently aspirating. So she had us ease of the thickener and then just watch him closely. I was of course a crazy woman because I was freaked out that he could be possibly aspirating. So Coop is doing great and is so happy. We love him and feel beyond blessed to have his amazing spirit to raise. We hope we can be the kind of parents he deserves.

Latest

Cooper is going to be coming home tomorrow. We are so excited and SOOO scared. We have always tried to do everything we possibly could to take care of him while at the hospital but still had nurses by our sides and monitors telling us he was ok. I am sure he will be fine and in a week we will forget that we were so scared but right now we are still trying to have confidence in our ability to care for him. He looks great and the doctors and surgeon are very pleased with his recovery. We stayed at the hospital last night with him to prepare ourselves for when he is at home and it was ZERO sleep. We just kept hearing monitors in other patient's rooms and the nurses chatting. I know at home we won't sleep too much better but hopefully I can at least get a little shut eye in between taking care of my sweet baby. I went with him this morning when he went to get his x-ray and it was so sad to see such a little dude laying under this HUGE machine. He was a champ and barely made a peep. One of Coops old NICU roomies got to go home today, we are so excited for Henry and Emily, his mom. Another one of his old roomies should be able to go home in a few weeks and she has already been at Primarys for four months. I can't stand seeing children sick and going through all they have to, but I am grateful we have the technology and medicine to help them get better. Wish us lots of luck!

Post - Op

Cooper had surgery yesterday and the doctor said it went very well. The next 24-48 hours will be very important & will give us a better picture on how he is doing. Please keep the prayers going & thank you for your support.

Cooper's Surgery

Our sweet Cooper is going to have heart surgery on Monday February 7th at 11:00 am. He will have a shunt put into his heart. We are asking all friends and family to please fast with us on Sunday and continue to pray . Your support in all of this is greatly needed and appreciated.

Cooper Update

On Friday Cooper was taken off the PGE(medication), he did pretty well until about 8:00am Saturday. His oxygen saturation dipped too low, so he is now back on the PGE. He will be on that for the next week. The cardiologist is still very optimistic, the EKG they did most recently showed that the blood flow in the heart was looking better. Also infants lungs change and develop rapidly, so they feel he will improve. It looks like he will be in the hospital for the next two weeks. We have been able to hold him some , which is wonderful. It is still so difficult not to have him home with us. We really need all your prayers and lots of faith to get through this time. Thank you once again for your love and support.

Cooper Update

First of all we would like to thank everyone for their love & support, it means so much to us. Please continue to pray for Cooper. He is being treated at Primary Children's Hospital in Salt Lake City, there isn't a better place he could be. The diagnosis is  Ebstein's Anomaly, which means the tricuspid valve does not work properly. Blood leaks back through the valve, making the heart work less efficiently. He has been on medication that has been helping him. Today(Friday 1-21) they will take him off the medication &see how he does. If he is fine he can come home, if not he will have to have a shunt put in his heart. Our cardiologist is very reassuring that he will be tearing up our house in no time. The delivery went well & physically I am recovering nicely. Right now our complete focus is Cooper & one another, if we are not returning calls or text please be understanding, things are really stressful right now. For up dates on Cooper's condition please continue to check the blog and Facebook. Thank you for your love, faith and prayers.