Hope for Colston

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.