Because I only sent this out to about 10 family members here is what Carter's announcement looked like. I saw something similar on pinterest and loved it. By the time I finally got around to make it and send them out he was almost 6 months old and it just seemed funny to send them out. It seems really funny to post it now that he is 9 months old, but whatever.
I can't say it enough, but I just love this kid. He is hilarious and getting so big so fast! He recently just had a growth spurt and has since been sporting some tad too short shorts, but cool weather is hopefully coming soon enough.
Some of my favorite things about this boy right now are -that he calls milkshakes sushi -that he still takes naps and good ones too -that he still mixes up his L's for Y's. We never know if he is saying yucky or lucky because they sound the same. -that he is obsessed with drawing. here is his first drawing of our family. I love the tiny eyes, huge nose, no mouth, round ball stomach, boxy bodies, and that some of us have hair. -that he LOVES to go on bike rides with me. we try to do it a couple times a week -that he wants to ride his bike with no training wheels -that he has a new mad face. He talks with his teeth gritted together and fist clenched. It's hilarious! -that he is obsessed with letters and pronouncing them. I don't know where it came from, but it is so cute. -that he says Carter is his best friend -yesterday he told me 'Mom do you know why your my friend...because you do whatever I want" obviously we have some work to do on what makes a good friend ha -that he asks multiple times a day when his daddy will be home -that he has been very into making his own books out of pictures that he draws I could go on forever. He really is such a great little boy. He definitely has his feisty moments, but they are usually short lived and are far out numbered by the good ones. He is absolutely Loving preschool and tells me all the time that he thinks he should go on Fridays too. I can't get enough of him.
Monday was such a fun day! In the early afternoon two of my old roomates came over to visit and meet Carter. It was so fun to catch up for a couple hours. I love these two girls and it was so good to see them. Later in the afternoon we went to see Ms. Cathy one of Carter's favorite NICU nurses. I don't know what it is about those nurses, but when I see them I just get so happy. I am sure it had nothing to do with the fact that they were Carter's life support team for a good 5 months ;) Honestly though I love them. Cathy was so happy to see him and love on him and I had fun watching her do it. Definitely a goos Monday!
I know I say it every month, but seriously he is almost a year!!!! That's just crazy talk. This little guy is seriously the best baby ever! No joke he is so happy and so chill. Just goes along with ever we have going on. He has started the beginning stages of teething, ya know the ones that last forever before they actually get a tooth. He is MR. Slobbers as Boston calls him, and puts everything in his mouth. This is such a good sign for Carter. He had such a bad oral aversion that if you even touched his lips he would arch his back and cry so yeah for everything in his mouth. His favorite is definitely his snuggly. He LOVES that thing! He really plays with his toys now and I think his favorite one is his little giraffe rattle. He is a champion sleeper! He prefers to just be put in his crib and fall asleep rather than being rocked. He takes two really good naps a day and sometimes a little cat nap around dinner time. I don't know how long he would actually nap for because it seems like we always have to wake him up, but I am sure they would be REALLY long if we let him. He is getting to the point that he only really likes to sleep in his bed. If we are out he is eyes wide open and loves to check everything out. Really he is a perfect baby one that if we didn't have all the craziness that we do I would totally be the mom that said I will have 5 more. Joking I was never cut out to be a Mom of that many kids, but I would take another 1-2 maybe if things were different. You get the point he is awesome! No questions asked his Brother is his favorite person by far. If he is in his view he is all smiles. It is one of our favorite things to watch is the two of them together. Boston really is so great with him! Now for the exciting part. Carter is one the Charts!!!! Last check up we had he was starting to fall of the charts even for his 25 weeker growth chart. I tell ya what that dang feeding tube that I wish we didn't have comes in handy. Add more volume and calories to his milk and bam he is on the charts for a 9 month old!! We were so happy about this.
Weight: 16 lbs 1 oz putting him in the 3rd percentile!!!! I know we are barely on there, but wahoo anyways! Height: 27 inches 10-25 percentile Head: 17.9 inches 50-75 percentile
Just like his big brother. Tall, skinny, and a BIG head! That's how we make them I boy they are cute. Anyways we LOVE this little peanut so much and feel so blessed to be his parents.
This has nothing to do with this post other than I love his profile and big noggin
Tuesday was the much anticipated scope where we would check out the status of Carter's airway. Turns out his airway looks great. His Vocal chords not so good at all. Initially Doctors and everyone thought that the bigger problem causing Carter to not be able to breathe on his own was the swelling/narrowing of his airway due to prolonged time on the ventilator. The lesser or so we thought problem was his paralyzed vocal chord which was a side effect of his heart surgery. The hope was that once the swelling went down in his airway there would be enough room for his vocal chords to function as they should and it would be easier for the right one to make up what the left was lacking. When Doctor Rohne (my absolute fav of all his docs) went down the swelling was almost completely gone, but his left vocal chord was doing absolutely nothing. In order for someone to breathe both chords need to be able to open and close and meet in the middle positon. Carters right can make it to midline, but his left stays open. Lots of times in paralyzed vocal patients one is usually weaker and the other is able to become more flexible and make up for it. Carters right was definitely not strong enough to pick up the lack. Does this even make sense? Basically Carter would not be able to breathe on his own without the trach.
What does it all mean?
Well it means a couple different things. Mostly more time and possibly surgery. We will continue to scope him every 3 months to check the progress and pray that there is some. If come March (when we were hoping to have it removed) there isn't any or enough progress we will discuss surgery. The surgery would be placing a stint on Carter's vocal chord to bring it mid line and stay put. The Doc said that he does not like to do the surgery on patients as small as Carter because it takes up some of their airway and babies airways are already so small. When I asked at what age he would operate he said we would discuss it when and if it is the route we will take. He is a nice guy and very sensitive to things like this. Which means he was not talking about anytime soon. Toddler possibly? So pretty much we are praying for a miracle yet again. It is very hard for Carter's vocal chords to get stronger with what he is doing now. Since he can't make any noise with his trach he doesn't really have any motivation to try and make noise and back to the feeding swallowing is great exercise for them. We really need Carter to be able to take a bottle and swallow.
So what are we going to do?
We are going to continue to make feeding our top priority. We are also going to get him what is called a "Passy Muir Speaking Valve" Tuesdays appointment wasn't all bad news (even though you would have thought so had you talked to me that day) The Passy Muir is something that was completely thrown out the door for Carter's case because of his narrow airway. It wasn't something we gave much attention to because we thought that we would be waiting on the airway not the vocal chord. What is it you ask. Here is a little YouTube clip about it.
Basically he will breathe in through his trach and out through his mouth and nose therefore being able to make sound!!!! I can't tell you how happy I am about this. One of the hardest parts of the trach for me has been not being able to hear him make any sound. The Doc says it takes most kids about two months to be able to figure it out to the point that they can wear it all day. We have our fingers crossed that it is something Carter will be able to do. There are a lot of benefits to the valve increased appetite due to being able to taste and smell better, less secretions, more use of vocals, and many more. Theses are definitely things we could use some help in. We should hopefully be getting it from our med company in the next week.
Can you just imagine a little squeal coming with that smile or a laugh. O I couldn't even imagine anything that would make he happier than to hear him laugh. I get giddy thinking about it.
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 subglotticstenosis 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.
