On the Evening of March 14 I left my baby like this, intubated. He seemed a little agittated and was playing with his neobar a lot, I had a feeling he was going to extubate any day now. I tried calming him down and got a great picture of him (the picture that is now on his marker where he lays to rest) He looked so alive that day. The next morning I called in and to my surprise my boy had once again janked that tube out of his throat and was once again being tried on sipap. I was happy, this meant my boy would be happier without that tube and we were progressing towards getting out of here. Because now all we needed to leave was Mason to not be ventilator dependent and got his Gtube wich was an easy operation.
On the 15th me and Louis went to go see him. I was excited to hold him, I knew I would for sure be able to hold him because his primary was taking care of him that day. There wasnt a day where he was stable and she was there where she would not let me hold him. I did not only get to hold him but we bathe him and changed his ostomy bag. Jenna also talked to me about getting Mason into a big boy crib, I was so excited about this because it meant we would more than likely be able to dress him. I could not wait till the day where I can put some clothes on my baby boy. He had so much clothes at home but even if he was able to wear them none of them fit. He was still a tiny 5lb baby. I had to go out to Babies R us and get him some preemie clothing. I got him a few tiny onesies and some sheets for his new crib. We also went out and bought him a mobile so that he would have something to look at. This was a huge step for me and I could not wait.
you could tell Mason needed to be out of that incubator, he was getting so big. I can only imagine how bored he must of gotten of seeing the same picture of his mom and his dad. I couldnt wait until we could put him in a crib. I was having tons of fun being able to just pick him up when ever I wanted to. In the meanwhile, while they could find an extra crib for Masons room they improvided by keeping his incubator top open at all times so it was sort of like a crib.
Mason was doing so good ith his breathing that on the 18th they even tried him on nasal cannula again but that only lasted about 20 minutes, he was being given a lot of breathin treatments but maybe he just needed a little bit more time to get use to the breathing all on his own. His feeds were going great aswell, we had gone from feeding him over a period of 6 hours down to just 3 hours but he was now getting 20ml an hr that was 60ml together. This was the most he had ever been on, he was technically on "full feeds" his TPN was pretty much ready to be shut off and he was off lipids already. This meant he would start gaining weight at a much more rapid pace. On the 21st the March of dimes had scheduled our NICU to take pictures with the easter bunny, of course I was so excited to take any pictures of anything with my baby so me and my dad got up early that day (daddy had to work) and went up to the NICU to wait for the easter bunny. I made sure to dress Mason in green so he was matching for easter.
Since Mason was in Isolation you needed to gown up before entering his room, I kinda had a feeling this was going to be a problem when it came to taking the picture, we couldnt take him out and the rabbit wasnt going to gown up for the picture that didnt make sence so when it came to the actual picture we just had the photogropher come in and take a picture of him from the outside, I dont know if you can tell by the pictures but I was so upset at this I started crying. I got over it pretty quick as they tried to improvice as much as we could to get the bunny in the picture. It turned out in a very funny picture of Mason and the Easter bunny.
Mason continued to have good days, he was eating good and having faboulous blood gases which allowed the respiratory therapist to wean him on the sipap settings. On the morning of the 23rd when I called in Jenna picked up, she told me that she had gotten a crib for Mason aswell as a swing for him to lay in. I was so excited about this, not only is my baby going to be in a crib and I can pick him up when ever I want but I will be able to put him on a swing too!
This was the first time we ever got to dress Mason, it was preemie clothes and it was still a bit big on him. I loved being able to just take him out and dont let me start on the swing, I think it was because he wasnt compleatly laying down that he absolutely loved it. He loved it so much that his nurse left him the whole entire day, Im sure it was a big relief on his poor back that for the last 4 months had been sustaining him on his back. He looked so tiny on that swing but it was the cutest thing ever. We were having so much fun with all his progress and all the new things we were dealing with that we never thought that it could all go south within a few days. This was the longest Mason had ever lasted without being intubated it was a record braking 14 days that we had him on sipap and were able to just hold him. Little did we know that on the morning of the 28th when I walked in the NICU he would already be re-intubated and his doctors would already be talking about a possible surgery. I walked in to see them re intubating my baby and telling me that they had done a chest Xray and it had shown a possible tumor or "seroma" as they called it and that this was more than likely why Mason wasnt able to be discontinued from sipap. They called in Dr Bethencourt (his heart surgeon) to discuss what was going to be done about the seroma. They would more than likely have to cut him open to cut it out because it was obstructing his air way and that is why he was not able to compleatly breath on his own. Not only that but it was getting worse, so bad that they had to reintubate him. I went in to see my baby like this
It broke my heart to see my baby intubated again, knowing he would have to endure yet another surgery But we were not giving up we had been through way too much to let something like this bring us down, this was the last 2 weeks of March, Masons best days alive<3
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