Thoughts

He loves his Bumbo

The Young Women in our ward picked a few of the Women that they thought exemplified each of the Young Women Values. They knocked on our door Wednesday night and presented us with a plate of cookies and a card explaining why they thought I exemplified the value of Faith. It got me thinking about it. I feel like I am literally surviving off of Faith, but lacking it all at the same time. Our schedule has been pretty overwhelming the last month. Carter has feeding/speech therapy 3-4 days a week for 60-90 minutes. On top of that we have all our usual doctors appointments which mean we are seeing 7 other doctors 1-2 times a month. This month we have an appointment every day but one Friday. Some days we have three no joke although I wish it was a joke, wait that kinda is a joke. I feel like I am missing so much by trying to do so much. I feel like I am missing the important things, the simple things that my boys are doing in exchange for the things that have to be done. This whole feeding thing is really burning me out. We literally spend hours every day trying to help him take a bottle with pretty much no success. We have seen improvement with the therapy. He has figured out how to move his tongue forward and back as opposed to up and down how he used too. He stuck his tongue out for the first time a week or so ago and I was jumping for joy. He is getting better at sealing his lips around the nipple, but still needs a lot of support from us. He will suck all the live long day it just isn't strong enough for him to pull out his milk. His swallowing is also improving just at a snail pace. I keep waiting for a magic wand and was really hoping the Vital Stim (shock therapy) would be that. I really need to stop measuring his feeding success by the quantity that he is taking, because if I measure it by the quality there has been SO much improvement it's just slow. Really slow. I think I can add Speech therapist to my 25 weeker baby resume and it just might be the thing I am best at.

Getting shock therapy. 4 electrodes on his cheeks and 2 on his neck. He does so well and is crazy about his therapist Jenny. She treats him right with chocolate pudding (to get his tongue moving) and a baby Einstein movie.

The other thing that has been making my mind spin is his development. He is really weak and doesn't have much reserve. He still won't lay on his tummy and do a baby push up which is one thing we have been working on for the last couple months. His core is really weak, but who's wouldn't be if they had a major surgery and scar right down the middle of their tummy. He has made so much improvement with his core strength over the last two weeks. He went from being able to sit in the bumbo for 5-10 minutes before folding over to now being able to sit there pretty much all day. We are so proud and so is he. He LOVES sitting in it. It has always been our goal to try and keep him on track developmentally with his adjusted age and since he is behind on that it has been a kinda hard. He is at about the age of a 3.5 month old when he should be at a 5 month old all while being almost 9 months old. One thing that we are very very happy about is that he is scoring at a 6 month level on his sensory and social skills. Our one doctor always says its easy to make up developmentally compared to making up mentally and we would much rather be fighting this battle than that.

Here is a little clip of his latest trick. If you thought we were happy when he did a baby push up I'm sure you can only imagine how happy this made us. Lets just say that tummy time just got a whole lot harder.


Tomorrow we are going to our ENT who tracks the progress for Carter's airway. About 2-3 weeks ago we had an episode where Carter's trach came out. It was out for 45 seconds at the most and he went completely limp turned blue then white and his eyes rolled to the back of his head. It scared the tar out of us. Brought back the nightmares and ugly thoughts we had when that would happen in the hospital. Since then we have been very anxious for tomorrows appointment to see the state of his airway. It is easy to think that not much improvement has been made with how fast he went out. He has subglottic stenosis which is a narrowing of the airway and if it doesn't get better with time it will require surgery to repair it. initially the Doctors thought that time would be all we need. The thought of another surgery makes me sick and the thought of more time (longer than March when we hope to get his trach out) makes me sick as well. Please pray that whatever we find out tomorrow we will be able to accept.

Well folks if you just made it through my sob story I applaud you that was long and depressing. Sometimes it just feels good to write it all down. I was texting one of Carter's NICU nurses the other night and she was telling me something where she said she needed to remind herself to listen more to her heart and not her mind. I need to do that more, because in my heart I know that I am beyond blessed to have my little boy and even though he doesn't do some things he does so much that he shouldn't be able to do. The fact that he is here and I am able to worry about these things is a huge blessing. A blessing that even though it is hard I would not trade for anything. I love my little peanut more than life it self and I know that I am blessed beyond measure for being his Mother. There are so many people that are going through trials that I would never want to go through and really if I could pick mine I think I would pick the ones I am going through. They have made me such a better, stronger, more understanding, loving, and patient person than I ever could have imagined.