Feeling the Pressure

I should really have my nose in a book, but a blog is a must right now. Last night was a hard one, where the past few weeks finally got to me. If you haven't been on facebook or even on here I have talked about Luke's aversion to his bottles. I know that I talked lightly about it, but in actuality it is finally getting to me. When Luke gets up in the morning he takes a bottle and it can be from 2 ounces to 4 or so ounces. We then go to cereal later in the day so we can still work with a spoon. We then another bottle the rest of the night. Sometimes we have great success and he takes the whole thing. Other times he either plays with it or just pushes it away. I know this little boy has to be hungry, sometimes it is 7 hours between feeds. However, he doesn't act hungry. He naps and is happy. Right now he is sitting next to me in his Boppy talking up a storm after taking just 2 ounces this morning. He hasn't eaten since 8pm last night where he took 2 ounces also. It just eats me alive. I feel like I am failing him in some way. I have talked to his Riley Pulmonary team. They placed him on Prilosec to see if reflex could be a problem. That wasn't it, he got worse on the medication with spit up and throwing up. We changed formula to the dismay of our team. They want Luke to get the preemie formula due to the extra calories. We are now back to the original due to the continued spit up. I have also stopped baby food to try and gain more calories. He did so well with spoon feedings and now we are slowing that down. I have tried numerous new bottles and nipples. Sometimes he likes them for a couple feeds, but then we continue with the trouble. My mind is only filled with the idea that we will be going back to an NG tube and if he has problems we might end up with a G-tube. This is my worse fear now. However, this week happens to be National Feeding Tube Awareness Week. I have been following Jack's mom's blog this week. I have mentioned Jack before as a preemie from Montana. Life With Jack She has opened my eyes that it might not be horrible, but still it weighs heavy on my mind.

I am so fortunate to have made a great friend in the NICU that I vent to and she does the same to me. We spend nearly 2 months together in the NICU with only becoming friends the last few weeks of her daughter, Lily's stay. They live in Terra Haute, so visiting isn't easy unless we happen to be at Riley the same time. However, thank you to texting, we check in with each other a couple times a week. I know that I have plenty of friends and family that are here for me, but someone that is living through it gets it. Life with a healthy newborn is challenging, but life with a preemie with a whole different world. We do the normal things too, but there is more going on at our house. We have to monitor Luke so closely with is feeds, lungs, and the fact that we are stuck in our house. We also have all Luke's appointments that I have to try and schedule around school, Jonathin's work schedule, and life in general. If I can't get things around Jonathin's work I take Luke alone. It might not seem like much and to be honest it isn't always bad, especially now with no extra equipment. However, it seems here lately we never get all great news and that is hard to hear continuously especially when you are alone. I am left them to take Luke to the car and sit quietly on the drive home mulling over everything they say.

We have the ongoing therapy work for Luke. He is slowly working towards goals, but slowly is the key. As much as I want him to catch up quickly, I have to keep reality in check. Luke's schedule is tiresome on occasion and can be a struggle that has to be done. My life has taken a backseat to this little boy and all his needs. I am not upset about his needs, I just want him to succeed in everything. I don't want to speed things up, however, I'm ready to see what all this little man can do. I'm excited about seeing his future, but I know we need to get through these struggles first.

When possible, I have to place all those feelings in he back of my mind and enter a world of student. The pressure to finish in 12 weeks weigh heavy on me. So much seems to lay in waiting for me to finish school. Needless to say I am feeling the pressure and have seemed to crack last night.