HAPPY BIRTHDAY MY SWEETS!

Today was an emotional day for me. Getting my shipment of bigger trachs didn't help I'm sure. I was constantly welling up with tears of joy, so grateful for getting to see Camden for his first birthday. For months I truly thought I would never see this day with him. I also had a pit in my stomach off and on thinking back on this time last year. Oh how I am so glad to have that part of his life behind me. And I survived. The Lord brought me through it. Only with Him was I able to move forward. Really. What I have learned this year is indescribable. So, here we are today, one year later.
Happy Birthday, big boy. I so love you. You are a very special gift and I know there are big plans for you.

Nanny and Nana came to see you and brought you some gifts, along with your Aunt Lizzy many cousins!

Also your special Ms Nichole and her kiddos had some noisy gifts to bring you. I can't wait for Emma's next birthday. I am sure there are many noisy dolls out there that mommy can repay her with. ;)





He loved the cards. I knew this when he played with a Christmas card forever last month.
He touched his caked, then realized icing sticks on fingers, and did NOT like that. Of course there wasnt any tasting either.
Fully Rely On God....cake made by Nana =)





Cousin Hannah and Jack below. I love this picture of them.


My grandma and my mom with the birthday boy. =)

"It will happen..."

I have told myself and Camden that phrase a lot this week. I am still working on the bottle and he is doing so good. 3 ounces in a thirty minute time frame is the record so far. At times it is a huge fight, but I think he really knows Im way hard headed and he seems to give in at times. AT TIMES. LOL He sometimes gives me this smirk that seems to be saying, " I'll fight ya to the end, momma...get it AWAY" He has thrown the bottle and hit the bottle too. But, I am way proud of him and I am seeing him drink! It will happen....he will one day no longer need his feeding tube.

He seems to be doing ok. Im a bit concerned that he doesnt seem to tolerate his PMV ( cap for his trach so he can make sound and breathe more through is mouth and nose) He also needed oxygen last night. Maybe he was just having a bad night. We'll see how he does tonight.

These days he is loving to play peek a boo and running into our ankles with the walker.

No appointments this week, yeah!

ENT appointment, and bottle time

The very excited news is that Camden did awesome with his bottle last night. This was totally unexpected! First I tried a spoon with cereal and he completely freaked on me, slapped the spoon, and cried. I almost didnt even try the bottle after that! PLus, I just knew the hospital stay/being sick was going to be a major set back in the eating department. I decided to give him the bottle anyway and I actually saw the liquid slowly but surely, moving towards the nipple. He was drinking it!! 25 minutes later ( he was quite over sucking at this point) I checked the bottle and an ounce was gone! I had praised him while he was sucking, and he is huge on impressing and showing off right now. =) He never gagged once. With oral aversion, you never know, but I am hoping this is the beginning of something. It is still small compared to the big picture, but such a huge step.

ENT today: Camden is getting a larger trach. His airways are inflamed, to be expected, and Im sure being sick was a set back. He still has fluid in his ears and the dr said next time if the fluid is still there, he is getting tubes in his ears. =( Always something, Camden! My poor babe. He was a super grouch too. He is so over the poking. I was a bit bummed about the larger trach. I know he is growing and needing it, it just felt like we were going in the opposite direction. Like he is no longer going to be a "trach baby" but a "trach kid". I never wanted him to be a "trach kid" ;( I am just feeling it wont be leaving as soon as I thought but Camden needs to grow more and get stronger and Im thinking with surgeries the trach isnt the worst thing during this season of his life. It is weird.

Speaking of growing, he is 18.14. Surprisingly through his crazy fast breathing and fever he gained, so that is telling me that I am maybe adding too many calories. I am going to give it another week and see if I need to cut back. I may have already shared this in my last post....cant remember.

God bless!

I'm back... well almost =)

Feeling so much better and his personality is starting to come back. Boy did I miss that! He is a funny little booger...
I am thinking today or tomorrow will be the last day/night of O2. His O2 sats are a bit higher today which is awesome. We'll see how he does through the night.

I am so over the feeding tube balloons busting! ( they have a balloon that is filled with a small amount of water once it enters the stomach which holds them in place) Camden's deflated on it's own, again, so Im guessing stomach acids are eating at it. Thankfully I caught it after a few minutes so the hole in his tummy was still nice and open for me to put it back in. But, since there wasnt a balloon to refill, I had to tape it on so that wasn't fun for him when I had to take all that tape off to replace it with the new one. Hubby had to go pick it up since we didnt have any back up. Hopefully this one will last longer. As much as they annoy me, Id better get over and be thankful he has a way to be fed.

He did his first real sign today! I was so excited....We were standing next to his feeding bag and he signed "milk". I have only been consistent with a few signs, and that is one of them. I was so proud. =) My smart boy!

He also (now this is really exciting) licked a cracker!! He has licked a graham cracker before( a few months ago,) but hasnt since. Last night he licked a wheat thin over, and over, and over. We made such a huge deal over it so he was trying to impress us. Then it got soggy and he threw it and wouldnt touch it again, but he did it. That is a really huge deal. He licked it and didn't gag.

While tickling him today and making him giggle, I noticed his top teeth have popped through. (I have to make him laugh to see inside his mouth. He keeps that mouth shut tight most of the time) Totally explains the drooling and gnawing of fingers. He is gonna look so cute with his teefy grin. ;p

I received a letter today from the company that deals with the insurance/home health agency saying that the agency appealed the denial of nursing and with the information they received about us they are going to continue to allow nursing. I don't know the details, but I am assuming this is for night nursing only since the last day for my day nurse will be the end of this month. That will be fine. I just need night nursing so I can function the next day. Hopefully I will still have 11p-7a. Now I have to keep them from falling asleep. Yep, i found one completely OUT the day after we came home from the hospital. =( His feeding pump had been going off and she never heard it. It actually woke me up and I was across the room with my door shut. Yep, I was livid. I had to pray for self control. I was even more upset because I spent an hour and a half with her the night before explaining my concerns for his breathing, the o2 situation, asking her to keep a close eye, etc. It was hard enough to have someone new come watch him and then when I found her sleeping I was sick. I hate that I have to have people come in, but I can't stay up 24-7. =( I know it will all work out but at times it really stinks.
I have a regular night nurse that is here most nights, but I will have to have more newbies come in to fill in the rest of the week. It can be difficult, but I look forward to the day where he doesnt have to be watched all through the night, no trach, no suctioning, no monitors, no feeding tube.....

Licking my cracker.....Oh Im getting lots of attention doing this! Maybe a few more times, but it is starting to feel kinda wet and gross. =P (and check out my new hair cut. It started with an IV in my head, I guess the nurses have never heard of detachol, or whatever, so they cut my hair and my mom had to even it out. One side is slightly balder....)

What?? I never get sick of all these cool cords I have lived with! (what will he do when all this stuff is gone? ...and boy am I glad I cut that crazy hair!)

Love this picture....he reminds me of a little pea in a pod and his face brings joy to my heart.

Glad to be home =)

We spent Wednesday and Thursday night in the PICU. Still never found out what went/is still going on, but they put him on steroids and antibiotics (which are burning his poor little hind end). I brought him into the pulm dr on Wednesday because I had called earlier that day and felt like he needed to be seen after they were just going to give me some meds over the phone. He was lethargic and breathing like 88 breaths per minute. He is a rapid breather anyway, but this was too fast. The dr thought he should be admitted. He tested negative for RSV and the flu. Since we've been home he is still having rapid breathing (not as fast) and still requiring O2. He hasn't been on O2 in months and even after surgery weaned right off of it. Now, as soon as his oxygen mask falls off, he desats to 86-89 and stays there. We thought he was all better from the cold he had way before Christmas, so I dont know if it just turned into something? Just keeping the pulse ox machine on a bit more now.
I am trying not to get fearful about his little lungs and just hoping that it was from the cold he had and thinking it just kicked his butt. Of course that scares the death out of me thinking what RSV could do to him. Ahhh, flu/germy winter season!!! I cant wait for spring.....
I can only pray that he will continue to grow stronger and stronger so that next time he can fight it even better. He sure tried his best this time and I think he did an awesome job. My little fighter...

My favorite things to do:

....pinching my mom's arm, tearing up the baseboards with my walker, fighting my mom during trach care, sitting up scooting on my but going in circles, round and round, and round, getting hyper over my siblings, ( they are so much fun and I cant wait to see them in the mornings!) blowing and giving kisses, pulling on trach ( I actually pulled it out once and threw it across my crib while my mom was changing it, Im getting fast! ;p) waving bye bye, yanking daddy's beard, and playing with my fisher price mailbox on my play mat! ( btw, my mom loves every bit of this except the trach part =p)

Why arent we gaining this week??? That is the question of the day. =( I just weighed him and he actually lost an ounce this week(now at 18.8) and we have been fortifying all the milk. Guess we'll have to add more. I cant believe how hard it is for him to gain and all the extra calories he has to burn. So, Im going to start adding another tsp to everything, because he is already getting enough liquid.

With the new year I have decided to get super aggressive with the bottle feeding and it is going better than I thought it would. At first I was debating on the bottle, but he tolerates a small nipple over a sippy cup nipple. If he eventually gets good with a bottle and gets over some of this aversion it may be an easy change to a sippy cup down the road. He isnt getting much down, maybe a few mls, but he isnt gagging and is sucking on and off. It is a huge chore and takes time and patience....but every time I just pray that will be the time were I can actually "see" the milk in the bottle slowly going down. He fights a bit, but he isn't crying and will actually play with it at times. I am making it extra thick with cereal so it isnt so runny, dripping straight back to his throat.

I am still pumping but with him turning a year old soon, I am thinking of stopping in the next month or so. I want him to get breast milk as long as possible. It is also a bit emotional for me. I have known he wasn't going to breast feed ( or even bottle feed ) for a long time with his awful oral aversion, but it is really "over" if that makes sense. I havent had my hopes up and I accepted it( as much as you can try to ) months ago, but as I pump less and as he approaches a year old I am sad yet ecstatic. Sad because I feel like I missed so much of the "normal" things with him, but overjoyed that he made it to a year and that I was able to experience Camden's "normal"!!!

My nursing situation is this for now: Every night from 11p-7a and then Wednesdays, Fridays, and Saturdays 8a-4p. I have told them to not send any new DAY nurses and have kept one of my original day nurses who we all love. She knows Camden's needs, Camden loves her, and I dont feel comfortable starting with new people at this point. He just hangs with us all day on nurseless days. The kids love it. That way when Norma does come in I can get a bit more accomplished and know he is being watched. Most importantly she loves Jesus =)
They BAD news is that medicaid is stinking right now. =s Camden has medicaid back up for whatever my private insurance wont pay for and they only paid for one month of nursing, so thankfully medicaid kicked in for the rest. Well, now they say that they are starting to cut my nursing hrs back to practically nothing in a few months.( they even said 2 hrs a day... really? Do they honestly think a nurse will come out for that short of time? ) Well, if he still has a trach that just cant happen, so I'll have to fight that. It just boils down to people working in an office not knowing what a trach is, clueless in the medical field, and people who have never had a special needs child. =( You need an eye on a trach baby. So, hopefully things will work out to where I will have at least 8 hours of night nursing so I can sleep. God will work it out....he always does.
So sorry to vent about this, but I haven't posted about the nursing situation in a while, so I thought Id give an update =)

We go see the ENT next week to get a trach update, and to the pulm. That is it so far, but I am thinking we will be due for a nutritionist visit too.