Saturday: November 30, 2013

The nurse came in early this morning and told us they were going on with Cooper's shunt surgery. About half an hour later they called for him. Luckily, the two teams were able to work together so that Cooper was able to get both the shunt and port surgery today. We headed to the OR about 8:30 this morning. They brought Cooper back to the room at 2:15 this afternoon. It was another long day, but everything went well. Both surgeries went as planned and Cooper did great. He has slept all day and is still resting well.

Before Surgery

 

After Surgery

 

 

Friday: November 29, 2013

Cooper had only a few moments to happiness today. He didn't go to sleep until after 3 this morning. He then only slept for an hour or so. He slept really well from 6:00 until almost 8:00. He spent last night and today screaming and throwing up. Our concern was that the pressure was building back up. They did a CT Scan which showed no changes. Again, this is good because nothing has changed for the negative, but then it doesn't give us any answers. The fluid on his head is completely gone. That made us so happy because it means it seems likes it's going where it should. However, his behavior contradicts that. He is scheduled for a shunt at 10:00 in the morning. This is actually only to hold our spot incase his has another bad night. We are hoping we can wait until Monday so we can do the shunt and port at the same time. This way he will only have anesthesia once. If we do the shunt tomorrow, then he will have another surgery Monday. Please pray that things will fall into place for Cooper.

Enjoying a Grilled Cheese

 

He was so proud of himself. When he finished his drink he sat it down instead of throwing it.

Precious Baby Boy

 

Mommy's Fav of the Day: Cooper wearing Daddy's hat!

 

Cooper telling Daddy about his day

 

Thursday: November 28, 2013

Happy Thanksgiving!

I wish I had some good news to report. However, today has been very upsetting. Cooper didn't sleep at all last night. He was up every hour or so. He did feel well enough for a few minutes this morning during breakfast. He ate very little, but enjoyed his milk. Then the fussiness and screaming started again. We tried to calm him and it was as though nothing worked. Randy was walking him around the unit when he threw up everywhere. He rested for a while after that. He managed to get most of his grilled cheese down and then we headed for the bath. He loved it at first then became very upset again. We put him down for another nap and he rested for several hours. When he woke up, the only way to calm him was to keep him on one of our chest. That's where he is now. The doctor said these are all signs that he is having a lot of pressure. We already knew this because these were the same symptoms that led us to where we are today.

The Jewell's hope each and every one of you had a very Happy Thanksgiving. Even though Cooper was sick we enjoyed the day and are very thankful we were able to be together. We all three cuddled up in the bed, watched the Macy's Parade and The Goonies (the only movie the unit had that wasn't a cartoon!).

I'm sorry that I don't have any pictures to post from today. He was just too sick to take any. So, I posted some from last Thanksgiving. Hope you enjoy!

Okay, so I forgot about the two pictures from last night and the one from breakfast this morning. Also, after I posted this Cooper woke up in a good mood and we were able to get a family picture before Daddy left for work again.

Cooper thought it was so much fun raising the bed as high as it would go and then letting it down!

 

 This is how Cooper listened to his bedtime stories, so sweet!

 

 We got very pretty Thanksgiving Day paper placemats with each meal today!

 

 

Mommy's Fav of the Day: Our Thanksgiving Day Family Picture. Look how much he has grown in the last year!

Wednesday: November 27, 2013

Cooper had his MRI at 7:15 this morning. The MRI showed little to no changes. It still proved that Cooper is border-line hydrocephalus. His doctor told us that if we lived closer or wasn't heading back to CHKD he would tell us to wait it out. However, in our situation we are all a little unsure. He said we could do a shunt that isn't placed as deep into the brain and that would still allow his body to figure out how to correctly reabsorb the spinal fluid. We have a few days to think about this. Our other option is to try to wait it out as long as CHKD is on board with us. We are looking at another one to two weeks here, then moving back to Norfolk.

Cooper woke up in a great mood after his MRI. He had some OT and PT. He "walked" around the unit, until he found his favorite nurse in the PICU and he was done! He walked with Mommy and Daddy this afternoon and ate a great dinner. We have been watching Charlie Brown and playing. What a great day!

Cooper eating at the table like a big boy! Check it out, he doesn't have his stitches anymore!!!

 

 Enjoying some lunch!

Mommy's Fav of the Day: Cooper walking and loving it!

 

I have no words for this. Cooper kept leaning over and trying to pick up the wipes with this mouth.

 

Tuesday: November 26, 2013
 
Day 30 in the Hospital
 
Cooper's brain surgery was one month ago today!
 
Cooper woke up in a great mood today. We played and ate breakfast. He had speech therapy first. They evaluated him and came to the conclusion that he doesn't qualify for speech therapy because he falls in the 12-15 month category. That's good news, but Mommy would love for him to receive the services because he is still behind from where he was prior to surgery. However, insurance won't allow it.
 
Occupational therapy came in for a short while and worked with him. Then physical therapy worked with him after that. He walked (holding Melinda's hands) all round the unit. He has come such a long way.
 
I tried to keep him awake until lunch. Didn't work. He was so tired. He feel asleep and slept through lunch and almost into dinner. We played and laughed a lot this afternoon. Daddy made it back and they both were happy to see each other.
 
Cooper is scheduled for another MRI in the morning at 7:15. They will also remove his stiches (yay!!!) and drain his fluid for a third time. He has surgery scheduled next Wednesday for this central line. They had to give Cooper an IV tonight. One nurse held him while another nurse put in the IV. I held his hand and sang to him. The hardest part of all this is when your baby looks you in the eye begging for you to comfort him, to take away his pain, to make everything all better, and there is nothing you can do. But then, I reminded of how lucky we are. The picture below is of my new friend, Brittany. Her little girl also needs prayers. She is struggling with her weight. They have done test after test and can't get answers. We are so lucky to know what Cooper has and what steps we need to do to make it as good as we possibly can for him. Madison, the little girl, has no answers. I can't imagine what it's like for them each day. So, I'm asking that each of you reading Cooper's blog to take a moment to say prayer for a very special family that we have become close to. Please pray for little Madison!

 

Cooper and Mommy's new friends - A very special family!

 

 

This was a challenge but we did it! Each year I wanted Cooper to make a Thanksgiving Day shirt. Last year's turned out adorable. This year, well let's just say Cooper did a lot on his own! It's suppose to be a turkey made out of his handprints and footprint. The foot looks good!

 

 

Cooper's Fall wreath he made with Mommy

 



We are lucky to have Cooper's babysitter stay at our house. She moved in the day we came to the hospital. She takes care of our house, the mail, and our baby - Harley. She even decorated our house for Christmas. Thanks Morgan!

The upstairs Christmas Tree

 

 The downstairs Christmas Tree with our other baby Harley. Can't wait to get to see her again. I'm sure Harley and Cooper miss each other.

Monday: November 25, 2013
 
Cooper got sick this morning at 12:30. He threw up a lot and it took us a long time to get him settled down. He woke up in a pretty grumpy mood.  He wouldn't eat breakfast and there was nothing we could do to satisfy him. He held his head and cried.  According to the doctors who did this procedure, these were all signs it wasn't working. However, Cooper's doctor came by and told us that it wasn't necessarily true. He allowed us to unwrap him and simply let him be. He was much happier. He ate lunch and took a long nap. Then he visited with company and played all afternoon. We are hoping that tomorrow we actually get some PT, OT, and ST in for him. We are praying that Cooper will receive his therapies, his fluid will stay down, and Daddy can get back to be with us real soon. He had to leave tonight to go back to work for a few days and it was very hard to say goodbye. We have been together since the start of all this. Can't wait to see him back with us!

Mommy's Fav of the Day: LOVE That Face!

 

 

Cooper Coloring a Picture

 

We took Cooper for a walk and he just couldn't make it!

 

Cooper enjoying a nap.

Coopering sneaking in some pumpkin pie!

 



Sunday: November 24, 2013

Cooper got up at 7:30 this morning, surprisingly in a good mood. That's early for him! We played and had breakfast. Then enjoyed some time with visitors. He was so tired from his busy morning he barely made it to lunch. We actually woke him up after a 3-hour nap this afternoon.

The doctors came and decided to do another "tap and wrap" because he had  lots of fluid build up over the night. They drained the same amount of fluid todays as they did yesterday. The doctors today acted like he needed a shunt, but we will see his actual doctor tomorrow. We still have hope.

Cooper took another nap this afternoon and then had some more visitors. Timmy came and did our Christmas photos. I can't wait to see them.

We were also able to spend some time with our new friends and Cooper really likes their little girl, Madison. She is a beauty!!!

Cooper telling Mommy he wants "more" cheerios.

 

Cooper loves story time: look how happy he is!

Cooper did not want Daddy putting his shoe back on, so he decided to pull his hair until he stopped!

 



 

Cooper and his new girlfriend, Madison!

 

 

Cooper really wanted to kiss her.

 

Cooper and Madison holding hands!

 

 

Mommy's Fav of the Day: Look, they are still holding hands: precious!!!

 

Cooper trying to decide if more spaghetti is a good idea!!!

 



Saturday: November 23, 2013

Today started off a little rough. They told us Cooper couldn't eat or drink anything due to him being sedated in order to drain the fluid. We had no idea what time they would do the "tap and wrap" so we let him sleep as long as we could. But he had to have his medications by 9:00, so we had to wake him then. We tried our hardest to occupy him so that he wouldn't think about food or milk. That was a very difficult task. Finally at 11:00 the doctor came in to see how he was doing. It was then that we found out he could have eaten. They had not planned on sedating him. To say the least, I wasn't too happy. Shortly after he ate they did the "tap and wrap." They stuck a needle into the side of his head and let the fluid drip out. They got the majority of it. Then they wrapped his head. The doctor told us they would be checking on it the first of the week to see if he had made any progress. Let's hope and pray he does.

Cooper has been in a great mood. He has laughed, played, and napped well. We had so much fun with him today. When we put him to bed we spent several minutes listening to him laugh and talk until he fell asleep: priceless!

These were from last night. I loved the way he crossed his legs in the first picture. He rolled himself over and scooted both legs under him in the second picture. Our boy is making progress!

Cooper helping the nurse check his vitals!

 

Cooper after his draining of the fluid, he was so brave.

 

Cooper meeting Sophie!

 

 

 

 

  Cooper hanging out with Sophie on the couch.  Notice the school poster in the background.

Cooper "walking" to Mommy with Daddy's help.

 

Cooper's new found love: cotton candy!

 

Mommy and Daddy were laughing at Cooper's big belly. We couldn't keep his shirt down.

 

 

This was taken only a few minutes ago. He is so precious :-)

And, that belly is still hanging out!