Tuesday, June 30, 2009

Cardiology Post-Op Appointment

We had a very bittersweet cardiology post-op appointment yesterday. The appointment went great. Cain once again had an x-ray and another EKG. Dr. Liske seemed very pleased with how well Cain was doing. He said that Cain's heart was still a little enlarged but that was to be expected due to the trauma it's been through with recent surgery.

The reason the appointment was bittersweet was because this was our last appointment with Dr. Liske (Cain's cardiologist) before he moves to Knoxville. I actually started crying as I drove up to the office. We have been through so much with Dr. Liske and he has been a wonderful cardiologist. He will be greatly missed.
Cain & Dr. Liske. Cain was a little out of it. He just woke up from his nap.

Monday, June 29, 2009

5 months

I have a 5 month old today. Wow!! Five months old and already had 2 major heart surgeries. It’s amazing how strong a 5 month old can be!

What is Cain doing at 5 months?
-Weighed 15lbs. 8oz. today
-Laughing & smiling at us more and more
-Starting to sleep through the night more often. But he still wakes up once during the night to feed more often than sleeping through the night.
-We are thinking he is starting to teeth
-Constantly wants to have his hands in his mouth
-Likes to take his pacifier out of his mouth and chew on it rather than sucking on it
-Still does not enjoy being on his tummy (We are trying to work on this more. It has been hard due to all the hospital time and his chest needing time to heal.)
-Holds on to some of his toys and can transfer some of them from one hand to the other
-His favorite song I sing seems to be “Patty Cake”
-We still can’t decide what eye color he has. We are thinking they will be hazel.
-As you can see by the pictures…he still barely has any hair. He certainly took after his momma. I think I was bald until I was three.

Sunday, June 28, 2009

Cain's follow-up appointment with Dr. Bichell

Last Thursday Cain had a follow-up appointment with his heart surgeon. We had to arrive an hour early for Cain to have a chest x-ray. I guess the x-ray looked good because Dr. Bichell was very pleased with Cain. Of course, we are very pleased with Dr. Bichell's work on Cain. Dr. Bichell has been amazing and we are very happy we chose to stay here in Nashville so Dr. Bichell could be his surgeon. What an amazing job he has done!

I left this appointment grinning from ear to ear!! It was such a wonderful feeling to leave this appointment knowing that if all goes well we will not need to see Dr. Bichell for several months. Two surgeries behind us...hopefully only one more to go! It was a relief to sit across from Dr. Bichell and be able to grin. I will never forget our initial appointment with him last September. There were no grins during that appointment. I can still remember barely being able to see Dr. Bichell through the tears in my eyes that day.

It's amazing to realize how much we've learned and how far we've come since that appointment with him in September.

I'm so excited to have this picture of Cain and Dr. Bichell!!

I can't remember if I ever mentioned this link http://www.vanderbiltchildrens.com/interior.php?mid=5122. It's a video of Dr. Bichell drawing an infant's heart defect on paper so the mother can understand her child's heart defects before surgery is performed. As you can see Dr. Bichell is not only a wonderful surgeon, he is also a very talented artist.

Wednesday, June 24, 2009

Jace's Surgery Update

I talked to Jace’s mom earlier this evening and wanted to give you an update on Jace. His surgery went great! They arrived at the hospital this morning at 10:45 and he went back to surgery at 3:40. By 7:00 Dr. Bichell had come out to talk to his family to let them know the surgery was over and everything went just as planned. It was going to be a few hours before they would be able to see Jace. Way to go Jace!!

While Dad's away....Mom will play!

Brad is out of town this week for work. He left on Monday and will be back on Thursday. I can't imagine how much he must miss Cain. Although, I bet he sure is enjoying his uninterrupted sleep at night. We will be so excited to see him again on Thursday.

Thankfully, my mom flew up on Monday to spend the week with us. I wasn't sure if I wanted to be alone so soon after Cain's surgery. We spent part of yesterday cleaning out some of the things in Cain's room that he has already outgrown or doesn't use anymore. I know I'm going to end up saying this a million times...but it's crazy how fast babies grow. It was so sad to fold up and pack away all his cute little newborn outfits but I was running out of clothes hangers and needed more room in his closet.

I was also able to get rid of some of Cain's medical supplies. Doing this brought back many emotions. I will never forget how overwhelmed I felt when we first brought Cain home from the hospital after his first surgery. I never could have imagined how many medical supplies we would have been sent home with. Thankfully, Brad went right to work on organizing everything for us.

The following pictures show some of the supplies we have been given for Cain.

The good news is I cleaned out all the feeding tube supplies and hope to find someone or someplace to give them to. Getting rid of these items really made me realize how far Cain has come in just a few months.

Since Brad was away and couldn't stop us...my mom and I decided we would play 'dress up' with Cain as I was cleaning out his closet. Many of his outfits came with hats. I'm not a big fan of the baby hats so I never put any of them on him. Today we decided to see what they would look like on him. Let me just say after Brad see's what we did to his son while he was away. He may never leave me home alone with Cain and a camera again.

And last but not least.....


Tuesday, June 23, 2009

Our "heart buddy" Jace

I have always felt very lucky to have so many wonderful friends in my life. It seems when it comes to friends they can fit into some sort of category such as your high school friends, college friends, work friends, etc. Over the last year I have certainly been blessed with many “heart” friends. I don’t know what I would do without each of these new friends. They are the people who know exactly what you are going through and we can lean on each other for advice and support.

We met one of these “heart friends” soon after Cain was born. His name is Jace and he was born around the same time as Cain…just a few days apart. Jace has HLHS and will have his Glenn repair performed tomorrow. This is the same surgery Cain just had performed. It’s the second surgery in the three stage repair process. Please keep Jace and his family in your prayers. I know they would really appreciate it! I will keep you updated on his progress once I hear how he is doing. They also have a blog that I’m sure they will be updating. It’s http://www.thecolefamily09.blogspot.com. Thank you so much!

Sunday, June 21, 2009

Happy Father's Day!!

Happy Father's Day to all Dad's! I hope you all were treated like Kings today. Poor Brad ended up having to do everything around the house and for Cain today. I came down with a stomach bug last night and of all nights Cain decided he would cry all night. Brad was up all night with him. It just goes to show how wonderful he is to our family. We don't know what we would do without him. It is so much fun to watch Cain look at his Daddy and laugh and laugh. Right now he loves it when Brad tells him 'I'm going to get you'. It always makes both of them laugh...and me too!
Daddy & Cain on Brad's 1st Father's Day
This is my favorite picture of my boys. I took it about a month ago and love it. Daddy & Cain reading 'their' book.

Thursday, June 18, 2009

Thank you!

I just want to say I am constantly blown away by all the love & support we have received over the last several months. Thank you all so much for all of your constant prayers. I received several emails and comments over the last few days and as always I really appreciate all of them. One thing I’ve realized is that many people always mention how strong we are and Cain is lucky to have us as parents. I thank you for saying that but I promise we aren’t doing anything anyone else wouldn’t do if they were faced with the same thing. You really never know how you will deal with anything that comes your way until you are faced with the situation. But in the end, it’s up to you on how you choose to respond and we have decided as a family to make the best of every day and cherish every moment we have with Cain. So far it’s worked but I can also promise you that there are moments when I’m not strong and I’m an emotional crazy woman! There is one thing I know for sure though…there is no way we could handle Cain’s ‘special heart’ and the stress that comes with it without all of you supporting and praying for us and for Cain! Thank you all so much!!

Tuesday, June 16, 2009

Home at last!

Drum roll please……

That’s right…Cain was discharged from the hospital today. Cain successfully had his RA line & pacer wires pulled, his stools continued to be negative for blood and his Echo and chest x-ray looked great!! He was observed for a few hours after pulling his RA line and then at 5:30 p.m. he was DISCHARGED!!!! I can’t tell you how happy we are.

We left the hospital with a huge bag of medications and several upcoming doctor appointments. Actually, our first appointment is this Thursday. We can't pick Cain up under his arms for 6 weeks and we will need to keep him on ‘house arrest’ for a few more weeks But, soon enough we will be able to get him out and about. Look out world!

We are so proud of Cain, so proud of the amazing Dr’s and nurses that care for him, and so proud that this strong fighter with a special heart is our son!! We love you Cain!

Picture that was taken right before all of Cain's lines were removed. Wouldn't you hate to wake up from this nap by tape being pulled off of you. Poor baby boy. We stepped out of the room and from what we were told...Cain let them know how much he didn't appreciate being woke up that way.

Cain talking with his Daddy about all the plans they have when they get home.

Cain excited about going home!!!

Hopefully it will be awhile before we are able to take a family photo in this room again.

All packed up and ready to go home!

Monday, June 15, 2009

Day 11 Update

Waiting, waiting, and more waiting. That pretty much sums up our day. Throughout the night and this morning Cain's dirty diapers still tested positive for blood. Thankfully, the remainder of his dirty diapers today tested negative. He had another KUB x-ray today which had negative results. They will keep watching and testing his dirty diapers but for now the Dr.'s don't seem as concerned about the GI bleeding. Cain will start taking Lovenox injections again tomorrow. Hopefully, we will learn that this medication is not causing his bleeding. It would be great for him to be able to tolerate the Lovenox so it can be restarted and go to work on breaking up his blood clot.

Cain will also have his RA line (central IV line that leads to the right atrium) and pacer wires pulled tomorrow around lunch. This procedure has to occur at a time when Cain's surgeon is available due to there being a risk of bleeding when this line is pulled. They will then have to observe him for 4-5 hours after pulling the line.

If all goes well after these lines are pulled, Cain's stools continue to be negative for blood, and his lungs continue to improve and remain clear, it is possible that he may be discharged tomorrow evening or early Wednesday morning.

Cain having an Echo performed this morning. He always watches very intently as he gets an Echo. He must enjoy watching his heart on the computer screen.

"What's this wire?"

"Come here foot!" Do you think this could be why his O2 sat's weren't reading correctly?

Cain was taking a nap this afternoon and when I looked over to check on him this is what I saw...

I guess he wanted to snuggle.

Sunday, June 14, 2009

Day 10 Update

We have good news for the day!

We finally moved from the 5th floor up to the...

6th floor! One step closer to going home.

Cain seemed to enjoy the ride up to the 6th floor.

On the ride up he just stared in amazement of the duck on the ceiling of the elevator.

I have to be honest with you and say that I am very concerned about both the GI bleeding Cain has and the blood clot he has. Earlier today I felt better about the GI bleeding because we thought the bleeding had stopped. Then this afternoon when I changed Cain's diaper he had blood again.

I've had several people ask where Cain's blood clot is located. The blood clot is located in the left innominate vein which is a large vein that is connected to the superior vena cava (SVC). The SVC is what is now providing return blood flow to the lungs after Cain's Glenn operation. If you are anything like me...you probably have no clue where the left innominate vein is located so I decided to include a picture. Of course Cain's heart looks nothing like this picture since this is a picture of a normal heart and does not identify Cain's re-plumbing.

As I mentioned in an earlier post, the plan had been to give Cain Lovenox to help break up the clot. However, we are starting to wonder if the Lovenox is what is causing Cain's GI bleeding. If so, I assume we will have to find another medication for the blood clot.

Thank goodness for all the specialists who have the knowledge to figure all of this out!

Saturday, June 13, 2009

Day 9 Update

I have good news and bad news. First, I'll start with the good news. We were told this evening that all of Cain's C. diff tests came back negative. Hallelujah!!! And we still don't think he has NEC. Now we just need to figure out what is causing the bleeding.

The bad news is that we didn't move up to the 6th floor today. Honestly, that is not really bad news. Basically, the only reason Cain didn't move up is because there were no rooms available.

Hopefully, we should move tomorrow and we hope to figure out the cause of Cain's bleeding. We are starting to wonder if it is caused by the Lovenox that he was receiving for his blood clot.

Cain & Brad watching LSU in the college world series.
Dressed and ready for the ballgame. Geaux Tigers!
"Look mom! I don't need you to feed me my bottle."
"I can do it all by myself"
Really...he can. Cain fed himself two of his bottles today. I can't let him feed himself all the time. It makes me feel like he is growing up way too fast. It was funny to watch though!

Happy Anniversary

Today was my parents 39th wedding anniversary. Happy Anniversary Mom & Dad!!! Cain decided he wanted to wish you a Happy Anniversary too!

"What am I supposed to do with this Dad?"

"Oh...I'm supposed to hold it like this and look cute?"

"Okay...Can I just crumble it up now?"

We love you both VERY much and congratulate you on being married for 39 wonderful years!

Friday, June 12, 2009

Day 8 Update

Well, we had a minor setback today. The morning started off great! There had been discussion of us being discharged until we spotted blood in Cain’s diaper. My first thought was ‘NO!!! Not blood again’! The last time Cain had blood in his stool we ended up in the hospital for 2 weeks. I don’t think this will set us back two weeks this time around. Cain is now currently on watch for NEC (necrotizing enterocolitis) and C. diff(clostridium difficile colitis). Although, the medical team has not yet completely ruled-out NEC, they do not feel that this is what he has, so much so that they allowed Cain to restart feeding after holding for only a few hours. We are waiting for lab results on whether or not he has C. diff. In the meantime, Cain is on isolation. Any medical staff that enters his room has to put on protective gear and gloves. C. diff often obtained in the hospital setting, is highly contagious and can easily be passed on to other patients. It often develops from taking to many antibiotics which kill all the bacteria in the stomach with the exception of C. diff.

We also met with a hematology nurse yesterday. Cain developed a blood clot from a central line and will need to start taking twice daily Lovenox injections again. We will give Cain this injection over the next 3-6 months. Hopefully the Lovenox will help the blood clot dissolve.

We are still on the ‘bed board’ and even with the possibility of NEC or C. diff we should be able to move on to the next floor as soon as a room is available.