I finally understand

Colston is 10 weeks old today. 

Justin and I just celebrated six months of marriage.

I finally understand the meaning of "time flies".

Instead of weekly appointments with the cardiologist, we now see him every 10-14 days. Colston's heart still looks great right now. He also weigh 7 pounds 1 ounce!! He is growing so fast and is finally out of all his preemie clothes!

Just in the last week he has been smiling like crazy. He is also starting to coo and I am just waiting for his little chuckle.  With everything that he has gone through so far, it is so amazing to see how happy he is. Not that I want him to be going through this whole ordeal, but I am thankful that it is when he is too little to remember it. 

There's not much else to report right now. I am so thankful that he is doing so well and the only thing I have to update is his new weight. 

I hope whoever is reading this has a great day :)

Colston has been doing great! We see the cardiologist about every 10 days or so and this last Friday Colston weighed 6 pounds 5 ounces!! A whole pound since he was born two months ago. We are so thrilled even though it's a slow climb, but it is a forward climb and that's all that matters. 

The doctor does an echo on his heart every appointment and Colston's stent and bands look perfect and everything is working as it should right now.  

One of the hardest things about him doing so good, is constantly having the thought in the back of your mind that something bad is going to come out of nowhere and it will set us back.  Trying to be optimistic all the time takes a lot of energy when you read so many stories of other heart babies that all have different types of setbacks and all you can wonder is, "I wonder if that is what ours will be."  It seems like every baby has a set back of some sort, be it a leaky valve or the worst, cardiac arrest. We've already had the latter so I'm hoping that isn't in the cards for us anymore. 

It is a difficult task talking to other families with the same heart condition because no two cases are the same.   I think I have scared myself into always thinking the worst from talking to the moms in my support groups.  Some of them have babies that had to go home on oxygen, or with a feeding tube, and also on six or seven different medicines. Colston is on two and was over saturating his oxygen.  I kept thinking...are we that fortunate? There's no way. The doctors are over looking something. For as bad as this is, we're doing really good. 

There was a small period of time where I let my paranoia get the best of me and I was in a constant state of worry. Ask Justin how many times I have asked him if he thought Colston looked blue, or if his breathing seemed shallow. But I had to stop doing that, as hard as it is, because it was taking me away from appreciating that he is here now and not taking for granted this present moment. He is still here with us and instead of constantly thinking and worrying about the worst, I need to spend my time looking at his big brown eyes, snuggling him while I can, and thanking God everyday for giving me one more day with my son. 

No, the worry will never truly go away and we are still very early on in this journey, but it makes it an easier road to travel on when you have great doctors, an amazing husband that you can vent all your frustrations and worries to, and God. The power of prayer is an incredible thing and we are so blessed that it has been pointed our way.  Every day with Colston is truly a gift and one that we promise to cherish everyday. 

Colston has been doing great adjusting to life at home. We are still trying to get a solid routine down but with a baby, is there ever really a routine?  

The cardiologist was very please at his follow up appointment yesterday. Everything is still doing its job and all blood flow is going where it is supposed to. 

Yesterday marked six weeks since his open heart surgery. We got cleared to start doing tummy time and we can now pick him up under his arms (still very carefully though). Even though the doctor says the sternal precautions are lifted, it makes me nervous.  He is eating so much more now too, we just need the weight to stick. He has only gained three ounces since his appointment last week but at least it's still a step forward. Colston is getting longer too! Most of his preemie clothes are too small now. 

We can now add a small amount of breast milk to his formula. Even the cardiologist didn't think he had a milk protein allergy but just to be safe we are going to start out with just a small amount and we have to keep an eye out for bloody stools. 

It's humbling having a child with special needs. I know several women who have had babies all around the same time as us and it's interesting to see how our milestones differ. I go on facebook and see other moms who's babies have been doing tummy time since they were just a couple days old and can lift their head up. Or other babies that are smiling and have found their voice. 

It's always exciting seeing a baby do things for the first time, but when you are told your child will be developmentally delayed, there's an immense sense of joy when you witness them reach their milestones because you never know when it will happen or just how delayed they will be.  It makes you appreciate the things they CAN do. 

Colston's feedings for example. When we left the hospital, he had to take at least 48 mL a feeding.  

Now he takes double that. 

He eats just a little bit more every day and it makes Justin and I so proud.

But it's not without a lot of patience. Heart babies have a more difficult time digesting food so we have to give him breaks every 10-15 mL's and we also can only give him 30 minutes to eat. We also can't feed him on demand, which with a growing baby is extremely difficult because I have noticed him getting hungrier sooner than his three hour mark. 

Every day is an adjustment to what he is capable of. Everything is on his terms and his terms only.