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. 

Jaundice

Colstons doing good this morning. His billirubin was up to a 21 (normal is around 10) so hes under the lights til his jaundice goes away. They said about 3-4 days since his was so high.

They took his dressing off and his incision looks great!

And I get to hold him today! I cried when the nurse told me. She said i can help change his diaper and do as much as I am comfortable with.

We are so thankful our little man is doing so good! They always tell us to expect set backs but we are just taking it one day at a time and being thankful that today is a good day.

Still doing good

Well Mr. Colston is still continuing to amaze us. 

He is doing so well even the doctors are a little surprised. He is still intubated from surgery this morning but he is not on any pain meds or sedation. They say it just sometimes takes infants a little longer for the anesthesia to wear off. 

He opens his eyes and gets fussy every once in a while but then he falls right back asleep. They want to see him a little bit more feisty before they take the tube out. 

He also got 20cc of blood today. They said that is also pretty standard after a large surgery like he had. 

It is so hard to say good bye to him every night but it's hard when I am still in patient and Justin has to go back to the Ronald McDonald house so we don't lose our room there. We take comfort in the fact that he is doing so well and the nurses that he has had have been nothing short of amazing. 

Good news!!

This morning was the hardest of mornings leaving our son with the doctors. He was sleeping so peacefully.

His surgery started at 8 this morning. It is now 11 and the doctors just called and said everything went great and there were no complications!!! Thank god!!

We cant wait to see our little fighter!!!!