What a difference a day makes.....

This title truly does say it all. No sooner had I written my last blog post did everything suddenly change THAT DAY! Let me explain.


We had noticed earlier in the week that Colin's use of oxygen was slowly increasing. At first, the nurses and doctors were not concerned, as they just assumed that Colin's lungs were just adjusting to find the right balance of how much additional oxygen he might require. However, by Wednesday, he was up to 2 liters of oxygen, when a few days earlier he was as low as a half liter. 


The doctors asked if anyone in our household was sick, and we said no. So if there was no sickness, another possibility was the dreaded "A" word: aspiration! It was speculated that since Colin was increasing his feeds by mouth, maybe a little bit was going down into his lungs and that was causing the lungs to look "wet" and made them work extra hard, therefore requiring more oxygen. 


To find out if he was aspirating, they scheduled a swallow study on Friday that would allow them to X-ray his throat as he was drinking his milk to see if he was aspirating. However, by the end of the day on Wednesday, they also realized that they had stopped his diuretics 5 days earlier, and that without the diuretics, it was probably causing his lungs to retain water (something that a preemie with Bronchopulmonary Dysplasia, or BPD/lung disease does). To see if it would make a difference, they put him back on diuretics that day. 


So by the time Friday rolled around, Colin's lungs were starting to improve drastically, and it was determined that weaning the diuretics too soon was probably the cause of him requiring more oxygen. However, since the swallow study was already scheduled, they decided to go ahead with it anyways just to rule out aspiration, just in case. 


Going into it, everyone said pretty much the same thing: "I'm sure Colin is not aspirating. He has never shown signs indicating he is. I'm sure this swallow study will be for nothing". Well, turns out, it wasn't for nothing. He was aspirating!


Not only was Colin aspirating, but he was doing it "silently". When this happens, a baby shows no outward signs that they are allowing liquid to go down their airway and into their lungs. Each time Colin took a sip of liquid, a little would go down his throat, and a little would go into his airways. They even tried to thicken the liquid, which sometimes helps them to coordinate their swallow better so they don't aspirate, but this didn't work either. 


So what does this mean? Well, the reason Colin is doing this is related to brain development. Because of his brain bleed and preemie status, he has delayed neurological processes. For this reason, he cannot coordinate his suck/swallow/breathe coordination......YET. The only solution for this to develop is to give his brain more time to develop. How long it will take, that is the ultimate question. 


Because Colin is already past term, any additional "unnecessary" time he spends in the NICU could be detrimental to his development. His occupational therapist put it this way: we could give him a few more weeks to see if his brain would develop this skill, and then re-evaluate him about a month later, all while he would stay in the NICU. However, if the skill didn't improve, then by that point, they would recommend a G-tube, and then send him home to to let his brain develop more.

OR


We could just opt for the G-tube now, and as soon as he recovers from the surgery, take him home, and let his brain develop. 


What would you do? Well, for us, we immediately thought it was a no brainer: G-tube now. 


Having a G-tube is not permanent, and as soon as his brain developed the suck/swallow/breathe coordination better, we can remove it. Plus, even with the G-tube, we can still practice feedings by mouth under direction/guidance by an occupational therapist, so the skills he has developed to this point are not lost. 


So Rich and I immediately advised the medical team that we would like to go ahead with the G-tube as soon as possible. Since he also needs surgery to repair a hernia, and a circumcision (yuck!), we wanted to see if they could do them all at once. 


After an upper GI and EKG to check out his heart was done today, he was given the ok for surgery. As of now, it is scheduled for tomorrow, March 6th, but since he is a low priority case, he could be bumped to the 7th or 8th. 


Everyone asks me how I feel about this. Well, like any diagnosis, my feelings run the gamut from relief, to panic, to sadness. Of course I am excited that this means Colin will be home soon (in 1 week if things go EXTRA smooth!). 


At the same time, my heart aches knowing that my only best option requires his little body to be subjected to more surgery. You would think I would be used to this by now, but I'm not. I think every time it has to happen, it has gotten harder each time. 


But what's the big picture? Colin is here with us. He can breathe (with a little help!), his brain is developing (with a little help!) and most of all, HE IS HERE WITH US! 


Is the future going to be a little tough? Sure, but every day that I can look into his little face and gaze into his little eyes, I am thankful. And that is worth any change that we have to be prepared for........