Strong? I think not

First of all Case is doing amazingly well. His surgery....complete success! He had more pain this time than ever before but it was his 4th open heart surgery and he is older so in my opinion that is to be expected! 4 weeks later and he is showing major signs of improvement and the pain is almost gone!

So through all of this people keep telling me how strong I am. They comment on my facebook how strong I am or how strong we are. I do not feel this way. I don't feel like I am strong. I only feel like I do what I have to do for my family and for my son. There are days I lie in pity and don't want to get out of bed. There are also days I cry most of the day. I don't put on makeup like I used to or do my hair, I used to be one of the most stylish women and now I really just don't have the want to dress up everyday. The times he is struggling I struggle in pain with him. I would give anything to go through this for him. Then there are days, like Monday, when we go to the cardiologist and with a huge smile he tells us how "happy" Case's heart looks....those are the strong happy days. I feel now he is doing so well that there will be many more of these happy days. It has just been a very rough go since March.

I thank it is very sweet and thoughtful that so many people see me as strong and I thank goodness that is what it looks like but I would never use that word to describe myself. I am a mom that was faced with a horrible diagnosis for my child and I am doing everything in my power to keep him healthy and alive. I think also most of my friends would step up to the plate if they were faced with what we have been faced with.

Fighting for Case is easy. He makes it easy because he is so wonderful, happy and special. He makes me want to be stronger.

Rollercoasters and Football Games

I feel like our lives these days consist of football games, school and preparing for an upcoming surgery. Today we started with a game and are waiting for a second. I love watching them play. The goal of youth sports is supposed to be fun...at times it is not. There is a lot of pressure put on little guys that probably shouldn't be there. A five year old is meant to have fun and to learn the game. We should learn to reinforce that winning isn't everything. I see parents yelling from the stands and kids not getting to play all for a big win. It is sad.

Then there is Case, I hear this is his 17th surgery. Most of them have been heart caths. This will be the 4th open heart surgery. Poor little child. Poor sweet child. I try not to feel sorry for him or us, I do this in quiet and when no one is watching. I think to myself why should one kid have to go through all of this? One little sweet 3 year old kid! Then I look at him and he is happy and he is LOVED, Case is so very loved. He is adored by his family and he is completely loved by our many friends. Strangers think of him and pray for him....I would even say that many strangers love him. He has touched so many lives and he has done it with a huge smile on his beautiful face. We are blessed to get to have such a wonderful child in our lives. He is the absolute happiest child with the biggest personality! He loves going to his brothers football games. It breaks my heart into a million pieces to see him fill with complete joy at football games knowing he will never play. He absolutely loves to spell out W-I-L-D-C-A-T-S and roar at the end. He's preparing himself to be a GP Wildcat and one day Bruce and I will have to break it to him that he will never step on that field as a player. It is small and in the scheme of all of these meaning less but it is one of the future things I am not looking forward to.

The Adams are excited about a big win this morning, hopefully one this afternoon and a BIG win on Oct. 7th when Case conquers the operating room with his "team" of surgeons, doctors and nurses.

Just living Everday to the Fullest

No news is good news so the saying goes. More like busy mom of four hasn't found time to update! Much less try to think between chasing two little ones, keeping up with two older ones, moving, cleaning....the list goes on and one and I am sure you get the point.

Case has been doing extremely well. We have had a couple of visits to the PICU but just for small viruses\infections and mostly just to watch him. He is beautiful, growing and happy. He is now crawling and very close t walking. He also has discovered a new favorite thing, stairs! I spend many hours of my day chasing him up them and boy does he love the game! His little laughter and squeals are contagious.

We are only seeing our cardiologist once every two months which is very different than the weekly visits we had grown accustomed to. This is great but at times it does scare me.

For now we are busy settling into our new home, planning for the holidays, keeping up with our boys, and counting our many blessings

Pictures

 

Here are some early pictures of Case. Also the last picture is of our family around Thanksgiving, I am a bit outnumbered!!!

Ups and Downs

This has been a crazy after surgery experience. Case's blood pressure continued to remain high for almost 2 weeks after surgery. He had surgery on Thursday Jan. 10 and by the following Sunday he was extubated and seemed to be doing great. He began eating and through Monday we thought we would soon be heading home. Doctors were still at a loss for the cause of the high bp. On Tuesday all began to go south. When we came into the hospital Case just seemed very out of it and extremely "sunken in" (dehydrated). Something about him just didn't seem right. In the mid afternoon I was holding him feeding him and all of a sudden his blood pressure went extremely high (top number 180) and his heart rate dropped to 88. I pulled his bottle away and around his little mouth he was very modly and grey. The nurse pulled his blanket down and his entire body was like that. The doctor quickly came over and the nurse picked him up to place him in the bed, his body was so limp. Nurses came from every direction and began to quickly work on him and the cardiologist came in. Even typing this the memory of it is so overwhelming I can hardly catch my breath. Of course when it happened Bruce wasn't there, he had ran home for a quick second. The chaplain came to sit with me and after about 45 long minutes they came and told me Case was fine but he had experienced a hypertensive crisis. Wednesday and Thursday were somewhat better but he still just wasn't right...not at all the baby we know and love. Thursday afternoon his bp seemed to settle down a bit and I stayed with him until about 3 am Friday morning. We called early Friday morning (7:45) and they said he was doing really well but by the time we got up there around 9:30 things again were really bad. Case once again had turned grey bluish in color and had begun breathing very rapidly and heavily. When I tried to talk to him he was very out of it. The anestisiogist was called in. The doctors were taking Case for an MRI and wanted him intubated (babies have to be paralyzed to go into the MRI machine). We left and went outside to get some air and catch our breaths. When we got back upstairs we learned that when they intubated Cases little body had a very bad reaction to it. They even had to give recessitation meds according to the anestisiologist. Luckily everyone working on our little guy is so amazing and invested in our son's well being he made it through. He remained on the breathing tube all weekend and we learned he had Corona virus (basically a cold) which for his fragile little body was very difficult to fight off. He was extubated early Tuesday morning and began feedings by a tube on Wednesday. On Friday he got his first bottle and 2 days later is back to eating 3 to 4 ounces every 3 hours. What a differnece some time and rest can make on a little dude! His bood pressure seems to be leveling out and the doctors are slowly backing off of the meds. Today he was smiling and so full of life again. My heart is overjoyed that he is doing so well. I am praying soon we can bring our baby home. He just needed a little extra time!!

We have had our Glenn (2nd Surgery)

Well guys our second surgery is done, I can not say we are over the hump and home but it is looking like the surgery was a success. We have hit a rocky road/almost wall. Case has high blood pressure, he has always had it but now it is dangerous high. We had a bit of an episode yesterday where we almost lost our baby but the doctors were quick and got some fluid and meds in him. He is much pinker and not so drawn and dry looking. The doctors are stumped, they usually see low blood pressure but have never seen high bp after this surgery. They are thinking it may just be his little body adjusting to the surgery.

It has been a while since I have been on here but in the past few months we haven't hit any speed bumps....until this high bp episode.

Please pray the doctors figure this out!!! Thanks

Can You Imagine?

I am sitting here catching up on some shows as little Case sleeps and Colt plays with his cars and trucks. Grey's Anatomy is on, one of my favorites by the way, a 15 year old has a baby, baby is extremely sick (with what I really don't know I was up doing things during that time). I know the baby does have some heart problems. The point of the story is mom leaves the baby. She says "There is something wrong with him." Can you imagine? Can you imagine saying that? Can you imagine walking away? I have told Bruce over and over that I am so glad this happened with our 4th child and not the one we had when we were 20. I don't think I could have handled it at that age. Don't get me wrong, I would never have walked away it would have just been even harder than it is now. In the NICU we saw so many teen parents and it breaks my heart because they just aren't ready to deal with that kind of stress.

Thanksgiving was truly a day of giving for our family. Although it was very hard to be split from some of our family because we can't travel and Case can not be around anyone who may be sick we were still joined by my mom and my brother. We had a small feast (as Kade calls it) and mom and I enjoyed much shopping (AH retail therapy)! Case slept through his first Thanksgiving meal!

Case is doing well and continues to gain weight, now weighing 9 lbs 3 oz. He had one week of slight weight loss because of a cold but he has definately recovered from that. Our weekly visits to our cardiologist are going well and cardiac wise everything is looking good. We do the cath lab on Jan. 9th, Dr. Khan is going to go in and make sure everything inside his heart is ready for surgery and Jan 10 is the big day. I am very very nervous about surgery but I know it is what we have to do. It is so hard to imagine this little guy in so much pain.

As for the rest of us our biggest baby has his first dance tonight! I am very sad and not ready for him to grow up. Bruce has been having some pain in his stomach and did a bunch of lab work yesterday and hopefully will get to see a dr today. We are fearing it may be gallbladder issues. So please throw a little prayer his way!