Good Days and Bad Days!

Since I last posted, a lot has happened. On Saturday, I went home to go to a family picnic and Jordan's work picnic. It felt really strange stepping into our house. It didn't seem right to be home without Cameron. By the time we got to Jordan's work picnic, all I wanted to do was get back to Cameron. I could hardly enjoy myself. It wasn't that I was worried about him, my mom and aunt were with him, I just missed him. By the time we got back, Cameron had gotten the breathing tube out. We were so glad and I was happy to be back. I didn't think it was going to be so hard to be away.

On Sunday, Cameron had a good day. They were able to lower his oxygen and also his TPN (IV feeds). By the end of the day his TPN was turned off and his tube feeds of milk were up to 20ml/hr. We also found out that they for sure wanted Cameron on 6 weeks of antibiotics and that he had five weeks to go. We were so excited about his good day and hoped he would moved to step down in a couple days.

When I got to Cameron's room on Monday morning, they were watching his heart closely. His heart rhythm was starting to look irregular. By late morning he had a heart flutter. The top of his heart was beating faster than the bottom. The doctors decided that they needed to shock his heart to restart it. To do this, they wanted him asleep so they had to put the breathing tube back in. I had a really hard time with this, we were so close and this had to happen. Jordan came while they were working on Cameron, I was so glad to see him. By now I was really struggling. He reminded me that God has a purpose for this to happen.

When we got to see Cameron again, the doctors said it went good. The breathing tube was in and when they shocked the heart it returned to normal rhythm. The doctor said that they hoped it was a one time thing, but that if it happened again it could be the new line causing it. The new line is right by the heart and it could tickle it and cause the irregular rhythm. The doctor also said if Cameron did good over night they wanting to take the breathing tube back out.

Cameron's night was good and so at 11:15 this morning he got the breathing tube out. So far he is doing good. I plan to go home in a couple hours for or baby shower.

Four Weeks Old!

Today Cameron is 4 weeks old. We had a good day. Cameron got a new line put in, the procedure went as planned. This is the long term line that he will get his 6 weeks of antibiotics through and any other things he stilld needs.  He did get put back on the ventilator for the procedure, but they hope to be able to remove it in the morning.  If all goes well in the morning, I hope to go home and go to a family picnic with Jordan and also go to Jordan's work picnic. 

Three Weeks after Surgery

Today has brought some more progress. Cameron had been handling his tube feeds, so they have been able to slowly increase the amount he is getting. He has been getting TPN, nutrition through an IV, with the increase of feeds they can decrease the TPN. The doctors have also been trying to decrease his oxygen he is on, but it has been a very slow process. Today they were able to make a change to high flow oxygen. So far he seems be handling the change well.

On Friday, they hope to put a PIC line in and it will replace his IV line. The PIC line will be the long term line for his 6 weeks of antibiotics. We are still learning about this procedure on Friday, but most likely he will need to be put back on the ventilator (breathing tube). The hope is that once he is awake again after the procedure that the breathing tube will be able to come right back out.

Thanks for your prayers and support!

One Day at a Time!

Cameron has been having a good day. They started him on NG tube feeds of donor breast milk , but only a very small amount. Cameron is still on oxygen. Once he is able to get off oxygen, he should be able to be moved out of the PICU to a step down unit. Since he got the infection, they want to start him on PIC line antibiotics for 6 weeks. Now, most likely this will mean that Cameron will be in the hospital 6 more weeks. Six more weeks in the hospital, that was really hard for Jordan and I to hear. We want to take our son home. As I say over and over, we just need to take it one day at a time. God is in control and has a perfect plan for our family. Jordan and I are so thankful for Cameron and feel very blessed to have him.

Three weeks old!

Today Cameron is 3 weeks old, it seems like we have known him for longer. On Wednesday night, his temperature spiked and his heart rate went up. They got cultures to see if there was an infection. They started him on antibiotics right away. This morning they found infection in both his A line and central line. They need to put knew IV lines in so that they get remove the infected ones. We just hope and pray that the infection will go away soon and not cause an more problems.

Recovery for Cameron is like a roller coaster. He is climbing and making progress one minute and the next he is going down hill and backtracking. The doctors say this is very normal. It really is a day by day journey.

Isn't He Cute!

Two Weeks After Surgery

Wow! Two weeks ago Cameron had his open heart surgery. Time seems to be going so fast when I think back over these last couple weeks. Even though July 27th seems like so long ago. I have not been home since July 26th and miss being there. I don't want to be an hour away from Cameron though, so I just stay. Each night as I lay in bed, the city noise never ends. Sirens seems to be sounding all the time, specially when I am trying to sleep! Lol As much as I miss the open farm land and just being home, I am content and want to go home when Jordan and I can take our son home.

Right now I am holding Cameron in my arms. Since he got the breathing tube out, we have been able to hold him everyday! He is such a sweet little boy. Cameron is having a good day and is very happy in his mommy's arms.

Good Progress

Cameron is doing very good. Yesterday Cameron was able to get off the ventilator. He is now breathing on his own with only a little encouragement of some oxygen. The next step is to get him off the oxygen completely. Today, Jordan and I were able to hold him, the last time being on July 29th!

Pictures with Cameron

This is when our family came to see Cameron for the first time!

Recovery Road

Since surgery last Wednesday, overall Cameron has been doing pretty good. There have been some ups and downs, but that is to be expected. Yesterday, we had a rough day with Cameron's blood pressure dropping. They worked closely with him all day trying to get it where it needed to be and figuring out the cause. They ended up putting him on some antibiotics so they would catch an infection if that was the problem. Today Cameron is having a good day. The doctors/nurses are working at slowly be able to back done on medications and the amount of help he is getting from the breathing machine. As that happens we will soon see tubes and lines start to come off! He is still as cute as can be, just has a lot of tubes. Plus as stuff comes off, that's the closer we are to being able to hold him again. I could go into a lot more detail about everything, but I am not good at trying to explain all this medical stuff. I ask questions so I can learn and understand what's going on.
If anyone would like to know more about hypoplastic left heart syndrome, pted.org is a good website with pics of what Cameron's heart looked like and what it now looks like. Once on the site go to complete list of topics and find the right heart defect. Overall, everyone seems very happy and positive about Cameron's progress.

Again thanks for all the prayers! I hope to post more pictures soon.

We are Praising God!

Today was the big day for open heart surgery. We started our day early so Jordan and I could spend sometime with Cameron before he went to the surgery room. My mom, Bob and Lori came to be with us soon before they moved Cameron. Bob prayed with us and we followed Cameron to the surgery and we kissed him good-bye.
That was really hard, but we knew God was holding Cameron in His hands.

Throughout the day we got updates every hour, which made the day go fast. Each report was really good, with everything going as planned. Jordan's mom, Josie and Jessie came to be with us around 2:45. At 3, Dr. Stuart (surgeon) was done with his part and within an hour came and talked to us. He said everything went really good and was very positive how everything went. We were so thankful to God that such a difficult and long surgery had gone so well. It was a miracle! Just think of how small a babies fist is, that is the size of their heart also. This surgery is one of the toughest surgeries to do. At 6:30, Jordan and I were able to come and see our son! He was doing really good! I am now spending the night in Cameron's room because in the first 24-48 hours they expect ups and downs. His mommy does not want to leave him.

Thank-you so much for the prayers, we have been able to feel them.