Not so fun today

Just not keeping the food down today! Choking on secretions, then throwing up. Gagging while being fed, then throwing up. :( poor baby....just not a good "eating" day today. We are working through the 5 pm feed right now and praying this stays down. He had been doing so good lately too. Maybe I am increasing the rate on his feeding pump too fast....just not sure. He did do great on the bottle today and I can see that he is liking it more and more. He gets tired out fast and still isnt getting much down from his little sucks, but still is sucking most of the time while we are working on it.

Nurse called in today so I have had lots of snuggle time. Didn't get much done, and so worth it! ;) It is actually much easier now that he has time off the vent. I can just drag him around with me which he loves, of course.

A wonderful thought...

I was just thinking as I was watching Camden sleep how he has not had one eventful night. At least none I can recall. He has basically slept through, ( except for the occasional smile he will give you when he wakes up for a minute while you change his diaper ) no issues, no problems. He does so well through the night. That is a huge blessing and I am thankful.

We are still working on the bottle. Not much change. He'll do ok and get about 15 ml down, then the following feed he'll get all upset and not do any. Tonight when he was air sucking ( he sucks an imaginary paci ;p)so I put a real paci in his mouth and he cried. You just never know...but if you compare it to a few months ago he is doing great and has come so far. He is sleeping peacefully now. My night nurse called in sick again so mommy is taking the first shift and then daddy will take over.

He made a new sound today. It is the "m" sound, but he sticks his tongue out while doing it. ha! Once he started he wouldn't stop for almost 30 minutes. It just makes me laugh!

He still is doing great during his time off the vent and hasn't required any oxygen since he has been taken off of it. :)

Mooovin on up...

....on feeding pump rates and mls..... ;p

He had 7 ml from a bottle today! I started with him 4 days ago and he is doing much better than I expected. I hook him to the g tube right when we begin, so he associates it with the full feeling. Not sucking the whole time, but tolerating it anywhere from 15-30 minutes! I am realizing that he has a much weaker suck than I thought. With the sucks he is doing, he should be getting way more out, but as we keep practicing it will get stronger. It feels very strange giving a bottle!! Not only because I have only breastfed my others, but Camden doing something orally with food looks so strange. A good strange. It is so exciting, but a chore at the same time. I have to rock and sing loud to keep his focus off the fact that he has the bottle in his mouth. The more I distract him, the more he sucks without realizing it. ;p Does mostly biting, but he does better and better with each feed.

As for the rate on the feeding pump....tomorrow I am trying 90 ml over an hour. ( he gets a total of 130 ml each daytime feed ) He is gagging and spitting up once with just about every other feed. It wakes him up out of his sleep like maybe his stomach is hurting. ;( Then once he is stirred up that is when he throws up, so I am thinking it isn't just about the rate of the food.

Had OT again today and was a booger!! Did not want to participate and was hard headed! ( He must get that from his dad ) Then he would laugh when I would pick him up..... :s He is getting much stronger in the trunk each week and is doing great with head control.

Camden started his 6 hrs a day off the ventilator and is doing perfect. He does 2 hours three times a day. It is so nice to have more free time with my "tube free" baby.

My father had a quad bypass yesterday and it was a success! Micah and I were able to ride up there to see him after he got out and then zip back home. He was completely out of it of course, but looked very good considering what he had just been through. Mom says he is doing very well today too!! At 72 he is still one of the strongest and hardest working men I know.....

Thank you, Lord!

First OT session :)

We like our occupational therapist and today went well. Camden was a bit sleepy but he made it through getting cranky towards the end. Ill make sure he has a nap next time but mommy had him a bit off schedule without a nurse today. Oops! :0) His OT will start coming once a week.
He is still hanging in there with his time off the vent. Monday he will start 2 hrs off. I can't wait and he loooves the freedom.
I finally took pictures today but between some computer issues and lack of time I haven't had a chance to post them, but will soon.


Today my parents have been married 30 years!!!!!! LOVE YOU MOM AND DAD!!!!!!!!!!!!! Thanks for being the best parents anyone could ask for....

Quiet Sunday

No nurse today, so Camden is spending time with his Nana and me. :) Kids and Marcus are at church, so it is really quiet around here!
Camden is doing great on his hours off the vent and his numbers remain great. The only bad thing is now that he has had a "taste" of so much time off the ventilator, he always wants off! As soon as he is up from a nap, he is ready and can't stand to sit there on a lap. ;) He will LOVE it next week when it increases to 2 hours off, because that will be practically all the time he is awake. He thanks the vent for its help, but is ready to say bye bye. ;>)

Orally, he is doing better. Still not eating or breastfeeding, but tolerating everything in his mouth which is huge. Sucks much better too, but can't suck things too deep, but is getting closer. Physically he is getting stronger everyday. Weak trunk and legs, but just needs therapy and we work with him daily. Occupational therapy is also starting to come every Thursday, so that will be so wonderful for him.

Happy 6 mths, my baby!!!

The kids and Marcus are at church and the nurse has left. It is just Camden and me and I have him here, right next to me, without a ventilator. Did I just type that? Did I ever really think I'd be able to say that this soon? I am enjoying his last hour off of it for the day and I am sure he is too. =) He has also done great without any oxygen at all for the last few days. His numbers haven't changed. Praise God!
I am so overwhelmed with different emotions today. 6 months ago today he was born. I have thought about that day a lot today. I hate to say his birth day was such a nightmare, but it was. My stomach churns to think of that day and the horrid weeks that followed. Now looking back and seeing how far he has come is almost unreal, but I know it is real. God is real, he is amazing, and he continues to carry us through this journey. I thank Him always.
I started to sob like a baby today when I had to take a trach box from him. I was preparing to change his trach and was taking out a new one and he grabbed the box that I thought was out of his reach. I cried because I am so happy that he is getting into things. Little things are so huge to us and he has just progressed so much in the last week!
Between suctioning and playing with Camden I have to end this post and put him back on his vent and start his night care. Plus he is eating his oxygen collar. =)

Where do I start? ;)

Been a while and a lot has happened. I'll try and give you a short version. New mic-key feeding button was put in, everything fine. The surgeon also had an xray done and his diaphragm is still intact and we will see her again in 2 months. I had my first trach plug since we have been home a few weeks ago due to someone switching the heater tubes where Camden wasnt getting any moisture. I thought he was getting sick, but poor baby was so dry and his secretions were so thick that he finally just plugged. As soon as I changed the trach he was fine, I just wish I had noticed the heater situation sooner,( still do not know how it happened ) but he is fine now.
All this while we were staying in a condo across the street while our house was gutted. The house looks pretty and we are home, but moving back in is chaotic. =) I am so disorganized and overwhelmed with it all, but it'll eventually get cleaned.

The OT comes Thursday for an evaluation. I can't wait to finally get that started. In the meantime I just continue working with him. He will suck a tiny syringe and swallows much better and faster. Mostly bites on the paci, but will suck occasionally.

Im sure I have skipped many details that have happened this month, but I'll fast forward to yesterday. :) We went to the Pulmonologist and she has decided to wean Camden off the vent even more. He has done well with his two, thirty minute windows off and now he is doing 3, 1 hour windows for two weeks, then after that he will be off the vent 2 hours, three times a day. Also of the oxygen unless his numbers go down, but last night he was off all night and did awesome. Doing so good!

For the vent moms: his bpm is 6 and PEEP is now 6 =)

He also gained a pound this month and is now 15.7 Still on breast milk only and since he gained the nutritionist won't want to add anything to my milk. =)

He is trying to make more sounds around the trach and his new thing is slapping things. ;) He inspected his hands yesterday like it was the first time he had noticed them. He is such a joy....thank you, Lord for allowing me to raise and care for Camden and continuing to heal him....


Pictures will come when I come across my camera that is probably in a box somewhere .....