My 12 day old is way stronger than I am

I don't even know how to start this post.

I'll start writing something, and then I'll erase it. Then I will word it a different way, then erase it. So I'll just be blunt.

Colston went in for his heart cath procedure and almost died today. Or I guess did, I don't know the technicalities of cardiac arrest. 

The doctors were originally going to do a balloon dilation procedure where it looked narrow at the bottom of the stent. Once they got in there, they noticed the entire stent itself had shifted a couple millimeters and was causing obstruction.  There were obstructions in a couple other area's of his heart too. They called in the doctor that placed the stent because they weren't sure if they were going to have to reopen him and completely redo the Hybrid or not. 

They replaced the stent and then Colston went into cardiac arrest. They did chest compressions for five minutes and by the grace of God, Colston came back. The doctors said he came back strong. He got another blood transfusion also. 

The doctors don't expect this new stent to shift like the first one and they don't expect any secondary problems to arise from what happened today. He is back on the ventilator, though they are hoping to extubate him a little bit later and they are keeping an extremely close eye on him for the next 24 hours. They want to limit his stimulation and just keep him relaxed. 

Justin and I have never been so scared in our lives. I can't even begin to describe the raw emotions that we are still feeling.  It's a deeper heartbreak than I have ever felt before mixed with relief and elation that our son is still here with us, fighting CHD and its entirety. 

Heart Cath

I just kissed my son goodbye as he fell asleep on the operating table to have his heart cath procedure done.

Cross your fingers and pray they don't find anything wrong.

The procedure is going to take 2-3 hours. 

We will update soon.

Uneventful

We have had a couple very uneventful days.

Uneventful is good!! Colston has continued to do great breathing on his own. He still had the nasal cannula in but it was just giving him room air but they took it out this morning. Now the only thing he has is his feeding tube.

He is so happy to have that darn thing out of his nose. Poor guy just keeps having tape taken on and off his little cheeks.

He has had a little bit of blood in his last couple stools but they did an xray of his stomach and everything turned up fine. They said its probably just from the aspirin he is on. I was really worried it was from my milk and I was absolutely devastated at the thought of not being able to give him my milk. I feel like thats the only thing i can REALLY do for him.

His heart cath is scheduled for 10 am tomorrow. It should take around 2-3 hours. Even though they say this is a relatively easy procedure my stomach is still in knots over it but deep down I know he will be just fine.

Today a fundraiser is being put on for Colston at Dragos salon in Minden. Justin, Colston, and I are so thankful to everyone putting it on and everyone attending. It means the world to Justin and I that our son is loved so much. I lived in the Carson Valley my entire life and I will forever be in debt to this gracious community.

My Big Boy

Colston got to try his first bottle today. 

I'm so proud of my baby boy. He drank a whole 5ml from it. I think we would've been able to get him to eat more had they stopped his feeds on the feeding tube earlier. The speech therapist had wanted to come in yesterday to work with him and make sure he can get sucking and swallowing down before we take the feeding tube out, but he was mr. cranky pants yesterday and just did not want anything to do with anyone so they held off. They are going to be coming by everyday and working with him for about 20 minutes at a time until he gets it down. 

He is also already working with an occupational therapist to work on his reflexes and muscle movements. They love how strong and feisty he is and they have shown us a couple different ways to help ease his pain and help soothe him a little better.

His bilirubin is now down to 8 so he got all those crazy lights off of him today. We were so happy because the only time we have gotten to see his precious face in the last four days is when we held him for about 30 minutes and the nurse let us take his mask off.

Colston had another echo today and the only thing the doctors noticed was a little bit of narrowing where the stent was placed. When they do his heart catheterization early next week they will be taking a better look at it and then another time doing a balloon dilation procedure to stretch it out. Thankfully this is relatively easy and he does not have to be opened back up for it. 

As far as set backs go, we are so thankful this is a relatively minor one. It could be a whole lot worse so we are thanking our lucky stars that as of right now his heart is doing exactly what it should be after the Hybrid procedure. 

It's been a while since I have picked up a camera (besides the ever-so-convenient camera in my smartphone). But with the birth of Colston I dusted it off, and started snapping away.

I put together a couple of albums of Colston's journey so far, and more to follow.


-Justin


Here----> Welcome to the World, Colston



and Here----> Mommy's First Hold

One week already

Colston is a week old already!

He's been doing extremely well breathing on his own. He hasn't had the breathing tube in all day and actually took his pacifier. Now he cries everytime it falls out. He gets that from his mama, she loved her pacifier as a baby.

Justin and I actually felt like parents today. We soothed him to get him to stop crying (which is insanely difficult when you can't pick him up to rock him) and I got to change his diaper everytime. Call me weird, but I actually got excited to get poop on my finger.

We are just waiting on a date and time for his heart catheterization procedure. This procedure is done to make sure blood is mixing properly in both upper chambers of his heart.

A speech pathologist is coming tomorrow morning to see if we can get Colston to take a bottle. The doctors haven't given us any time line on when we get to go home but the biggest factor on being able to go home is Colston eating and continually gaining weight. Cross your fingers he takes the bottle like a champ tomorrow!

Complacent

So Colston has the breathing tube back in.  He decided to get "complacent" as the doctors call it and stop breathing, which apparently is to be expected with pre-term babies and babies who just had a chest tube taken out.  

I was sitting there rubbing his hand and his machine started beeping. We hadn't been back in his room ten minutes and his oxygen saturation went from 89 to 50 in seconds. Justin ran to get his nurse who was with her other patient and grabbed the first nurse he saw in the hallway. 

Suddenly there were five nurses in there, one breathing for him with a mask and the doctor tells us he needs to put the breathing tube back in and we need to leave the room. 

Sitting in the waiting room was the longest ten minutes of my life. The doctor came in and assured us that Colston was fine and that this is a typical thing, they just expected it to happen within hours after the tube was taken out, not the next day. He also said that while we were gone, Colston had been holding his breath for short amounts of time, which put the nurses on alert that this was probably going to happen. 

It also didn't help that Colston hardly had any sustenance in his system. They took out his UAV and UAC lines but didn't start him on Pedialyte for a few hours. He is now able to get breast milk through his feeding tube so hopefully he will start gaining weight and it will give him the nutrients he needs to not get so complacent. They are also going to give him caffeine. Poor guy was probably just too tired. He has had a crazy four days. What he has gone through in his short four days of life would take down a grown man.

We are so thankful at how fast the nurses and the doctor reacted. It's hard seeing how happy and content he was last night and seeing him sedated now. He was just staring at us last night and grabbing our fingers. The nurse had told me earlier I would probably get to hold him today but that's not an option anymore. I was so excited but he is safe now and that's all that matters.