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