Off the ventilator

Colston has been off the ventilator since about 4 this afternoon. The doctors and nurses are all surprised and impressed at how well he is doing which in turn makes us very happy parents.

He has been sleeping ever since they pulled the tube out. The nurse said usually babies are crying and fighting by now but Colston is just content. I want him to wake up because I miss his smile and his big brown eyes like crazy but on the flip side, the longer he is sleeping without the ventilator, the better he can heal without us having to strap him down. 

He has also been able to be taken off of four different medications. Yay! 

Like I was saying in one of my earlier posts, this go around is so much harder than last time. I feel like a part of me is missing. I just want him to open his big eyes and laugh and do all his silly faces. 

We will get there. 

Good Morning

Colston is doing great this morning. Actually, almost a little too great if you can imagine that. 

He is fighting the ventilator and breathing on his own which is good but his blood pressure numbers and some other numbers aren't quite where they should be for them to take the breathing tube out. They had to sedate him to keep him from moving so much until his numbers match. 

When I woke up at 3 this morning the nurse had put socks on his hands and clipped them to the side and she literally said, "yeah he was trying to take the breathing tube out on his own."

That's my stubborn boy. 

A woman in one of my mommy groups had started a discussion asking us who our role models and inspirations are. I think you know who mine is.

Mr. Colston James Krische.

You, little boy, are the most inspiring person and I thank God everyday that he blessed me to be your mommy. 

You have taught me just how precious and short life is. You have taught me to love deeper than I ever thought I could and you have brought your daddy and I closer than ever. 

You have taught me that even though our situation is difficult, it doesn't invalidate the struggles that others go through even if they seem minor in comparison. 

Most importantly, you and all these other babies we see in the hospital right now, have taught me to be a more compassionate human being. You have taught me that everyone has their own set of struggles and that there will always be people that have it better than us and there will always be people that have it worse than us. We need to be thankful and happy with where WE are right now because this is exactly where God needs us to be right now. 

I can breath now

This morning I handed my sweet baby boy over like this,

He was doing so good. We were set to go back around 8 but like I said earlier, anesthesia was running late so this poor guy was so mad and cranky when he finally went back around 930. They made the first incision at 9:50 am and we finally got to see him at 9 pm. 

Now my sweet boy is all hooked up and plugged in to everything. 

They ended up not putting Colston back on bypass like my last post said. Dr. Ciccolo decided against it because he didn't want to put more stress on Colston's kidneys. They were able to patch up the left pulmonary artery. What this was doing was causing too much pressure in Colston's lungs. 

He is being closely monitored over the next few days to make sure that the eight hours today that he was on bypass did not affect his kidneys or anything else. So far, everything is looking great though. 

The numbers that they are looking for to determine if the lungs still have too much blood pressure are on the high side of normal range. If those numbers go up then Colston will have to go back to the cath lab to get another stent put in. 

That's all to update for now. Justin went back to the Ronald McDonald house and I am here with monster man. 

p.s. The bottom picture of Colston and future pictures of Colston with any wires attached will always have a water mark on them. 

New heart parents I encourage you to do this with pictures of your babies in the hospital too. There are so many horrible people out there that use pictures of babies in distress like this to make fake GoFund Me pages. It is absolutely appalling. 

Delay

One of the doctors just came out and gave us an update.

The surgery was all done but when they took the follow up picture they saw that the left pulmonary artery was really narrow from the band. 

Now Colston is back on the bypass machine and back in surgery for another few hours so they can patch that up. 

It's hard to hear but we are thankful they saw this now and not later where he would have had to be opened back up again. 

Half way there

Colston's nurse just came out to update us. 

They are almost done with repairs but we still have about 2 hours to see if they can get him to stop bleeding and if they can, they will close his chest.

If they can't get the bleeding to stop he will go up to his room in the PICU with his chest still open with a drainage tube. 

Cross your fingers they get the bleeding to stop! 

I just laid Colston in the nurses arms. 

The anesthesiologist was running about an hour late so he had to wait even longer being starving. Poor guy hasn't been able to eat since midnight. He was crying when I laid him in the nurses arms.

Hardest thing I have ever had to do was walk away from him as he was crying and looking at me and Justin. 

It's going to be the longest six hours of my life. 

Bidirectional Glenn

We are a day away from surgery. Today is a very lazy day of lots of snuggles and just hanging out at the Ronald McDonald house. Here's Colston this morning being a bed hog. 

Surgery is at 9 am tomorrow morning. 

We met with his surgeon, Dr. Ciccolo, on Monday to go over the surgery in great detail. I had my notepad with me to write everything down but it was so much information that it was impossible for me to keep up and I know how valuable his time is so I didn't want to keep him longer than needed. Here is the Mayo Clinic's definition of what will be happening tomorrow. 

Bi-directional Glenn procedure. This procedure is generally performed when your child is between 3 and 6 months of age, after the first procedure. In this procedure, doctors remove the first shunt attached to the pulmonary arteries, and then connect one of the large veins that normally returns blood to the heart (the superior vena cava) to the pulmonary artery instead. If surgeons previously performed a hybrid procedure, they'll conduct additional steps during this procedure.

This procedure reduces the work of the right ventricle by allowing it to pump blood mainly to the aorta. It also allows most of the oxygen-poor blood returning from the body to flow directly into the lungs without a pump.

After this procedure, all the blood returning from the upper body is sent to the lungs, so blood with more oxygen is pumped to the aorta to supply organs and tissues throughout the body.

Dr. Ciccolo informed us that it will take approximately 6 hours and requires Colston to be put on the bypass machine. 

That of course is not easy for any parent to hear but we know that we don't have a choice and all of this is going to give Colston a chance at a better quality of life.

That being said, the mortality rate is approximately 15%. We are so thankful that technology is so advanced with this heart defect and that there is an 85% chance our baby will make it through but it is never easy to hear the probabilities of your child surviving an operation. 

Colston is expected to be in the hospital for about 2-3 weeks but then again, it all depends on him. If he is able to get off the ventilator quickly and eat how he was before surgery then we can go home. They have had babies go home in a week and they have had babies not go home for months. 

It's times like this that truly test your faith. I will be the first person to admit that my faith wavered during Colston's first operation and his two cardiac arrests that followed. It wasn't fair for my sweet innocent newborn baby to have to go through all of this. 

The best words of wisdom I received were, "It is not God that is letting these bad things happen. He simply knows that bad things happen and He gives you the strength to get through it." Ever since I heard that, I have given this whole journey to God. It is in His hands and only He can help us through it. 

This morning Justin and I were looking back on the pictures we took in the first two days of Colston's life before he went in for the Hybrid at two days old. It was hard to imagine past that moment. We didn't know if he would make it this far. Now here we are going in for stage two and having the exact same fears and worries, but it is also different in many ways. 

We actually know Colston now.  

I know that might sound weird to hear and I don't know any other way to put it but we didn't really know Colston then. Of course, he was our son and we loved him with all of our hearts but we didn't have the bond that we do now. 

I missed out on crucial bonding time the first day of Colston's life because I was sick in my room and they wouldn't let me go to the NICU. I didn't get to see him until he was about 12 hours old and even then I had to make it quick because it was about 10 at night. I didn't get to hold him until he was a week old. 

Things like this are gut-wrenching for a new mother and father and it's even more so now that we know what makes him smile, we know what makes him laugh, and we know his personality. 

We are truly a family and have been able to actually be a family once Colston was able to come home at 4 1/2 weeks old. 

We know Colston is one tough kiddo. He is way stronger than I will ever be and I draw strength to get through this from him, Justin, and God. 

Please keep Colston in your prayers during surgery tomorrow and his recovery in the following weeks.