Over the weekend....and pictures

First time trying cereal...he did so well at first, and now gets upset and shakes his head NO when I try. ( That is another story....)

This next pictures had us hysterical! He just sat there watching us laugh!

Camden and Nana at church

Camden was dedicated at church this past sunday. It was a very special time and mommy was very emotional. =p We left right after we went in front of the church and Pastor Kevin prayed. I am a bit nervous with the flu going around so we stayed away from everyone. It was a great day! No pictures though..... =(

He is doing well off the vent. It didn't seem like it was going to be that much more time off, but now that we are doing it, it really is. I think he only napped around 2 hrs all day today. That is a lot of time off. We are suctioning much more now too. That and the fact that he is completely silent are the bad parts about being off the vent.

Quick update on today's appointments

Camden will be off the vent all day except for his three main naps. Basically he'll be on the vent around 3 hrs a day, and then he also stays on all night. This is progress, I just have been feeling so impatient. =( I have to stop trying to rush him so much. ;)

He felt bad today due to the shots last night. Poor thing woke up with fever and was so cranky all day. I hope he is back to himself tomorrow. I've never seen him like this before. :(

As for Micah her echo looked good and we will get the results of the monitor Mon. All in all things seem to be fine!

Im sleepy and my husband is taking over until the 11 pm nurse comes in so that can go shower and nap. Thankyou for your prayers. =)

Lots to share :)

I have been putting off blogging in hopes that I would find my camera equipment to share pictures, but that still hasnt happened so you'll have to use your imagination. =)

Camden has tried rice cereal and squash this week. He did great! Swallowed it and it didnt seem to phase him much. I am impressed since we thought he wouldnt do well with all his oral aversion issues, but I am thinking those issues are almost gone. He still gets upset with some things, but overall he is doing great. After a few bites he would cry or shake his head no and I stopped, but I think he'll do well with this after getting more used to it. As for the bottle, we are still trying but not getting any down--maybe 5 mls. I still work with him at least 3-4 times a day.

He is now weighing 15.14 according to our home scale. Dr. C came to see him today and he got his RSV and dtap shots. ;( ( did i ever share that his ped comes here to see him and she is so precious?) The first shot I made him laugh through, ( he cried for a second, then laughed)but the dtap was a stinger and he was crying so hard I could almost hear it coming around the trach. Poor baby. THen he was just angry for a few minutes after that and I believe I saw him giving the doc "mean eyes" lol Few minutes later he was smiling. What a darling....

Physically Camden is doing wonderful. Actually more than wonderful. He has progressed so much in just a week. He is so close to sitting up, and the OT was impressed with his progress today. She hasnt seen him for two weeks, so he has changed a lot since then. He seems to want to start inching his way around too. I think he will get the hang of it real soon. Tummy time is becoming easier and he is very close to rolling onto his stomach. His arms just get caught underneath him and he just needs to strengthen them. For where he has been, he is doing so great. I am literally watching this boy heal and grow stronger everyday.

His reflux took a turn for the worse this week with lots of gagging and throwing up during feeds, then today he did wonderful! It just acts up when it wants! I hate it for him and just pray for healing in that department. We are up to a rate of 104 on the feeding pump. So about an hour and 15 is how long it takes him to be fed through his g tube.

Tomorrow we go see the pulmonoligist. Well, today since it is 4am lol ( yes, no nurse, 5th night this week..that is another story) I am very excited to see how many more hours we will wean him off this ventilator! He has not had one issue on his time off of it so far, and not one issue since we have taken the oxygen away. I am praying for all day off, and on for nights only but I think I am getting too anxious. ;) I just want this trach out. I want to kiss all over his little neck and hear him cry. You will probably hear me say that again because I think about that day almost everyday. :)
SO, tomorrow I will give the update!!

On another note---my daughter, Micah was having some heart issues that i was concerned about. Some odd high heart rates....anyway she is having some tests ran and goes back to the cardiologist tomorrow. Daddy will have to take her while I take camden to nemours so please pray that marcus will pay attention to what the doc says. Just kidding, ( kind of ) but please pray that all is ok with her. It was probably nothing, but I wanted to get things checked out, and her pediatrician agreed. Micah is wearing her heart monitor thingy and is milking every minute of it. I had to sponge bathe her earlier ( i did it like we do camden, so she thought that was wonderful) since she cant get wet and she is loving this special treatment and attention and shows her wires to anyone she sees. Little stinker. so, updates on that soon too.
thanks all =)

Happy 7 months!!

Well, it is 1am, so yesterday was 7 mths! =)
Sometimes it seems almost unbelievable that we have been on this journey for 7 months. It seems that time is flying by, but in some ways it can seem so slow. I normally dread my babies growing so fast, but with Camden I can't wait until all the difficult times have gone away and he is grown and healthy.

**Happy Birthday, baby boy! Your nurse is out tonight and you are sound asleep but I want to scoop you up so bad and snuggle. I keep thinking about it but then I realize it is a stupid idea because you really need to be on a schedule for you night time nursing. I don't think they'll appreciate you not wanting to sleep in your crib anymore. Plus mommy needs sleep when they are here. Oh, and you will be very hard to snuggle with while on your reflux pillow. ;0) Maybe we'll take a nap together one day when you aren't eating!! =) I love you!!**

Ok, so now Camden isn't getting hungry at all since we have increased his feeds. Bottle time is now more of a chore and I have to fight to get 5 ml down. And then I don't want to make it a negative experience, so we stop. He has to gain weight, so he has to get the increased feeds, but it is putting him behind learning the bottle because he is never hungry. Ugh! These are the times when time seems like it is going by sloooowly. ;) He did only spit up once today so it was a good day keeping things down. He had a hard time yesterday with horrible gas pains so he needed a break, poor baby! I pulled out a lot of gas out of his g tube yesterday after a feed.
He is also at a rate of 100. If we stay on track of increasing the rate daily, in 45 days he will be able to get fed over an hour.

Took the kids to church

and I think I thought of Camden 95% of the time. Is that bad?? :)
Marcus stayed home with him, and other than some loose trach ties and the wrong rate on the feeding pump he did alright. ;) My husband was also trying to teach him to burp ( hello, nissen surgery, not possible) so Camden is now making obnoxious sounds from his trach. Yes, I have another stinky silly boy on my hands!! He is a little animal not wanting to stay still and I get so excited to see him so active. No nurse tonight so I am catching up on my blogging. I am taking the first shift then I'll go get Marcus around 3am. The computer helps time go faster... ;)

I bought a few more bottles and it seems the dr brown one is Camden's favorite so I'll start him on it tomorrow. It was late after church when I got in so I just gave him a few "tastes" to see which one he liked best. Doing better with the bottle and starting to enjoy it more. He gets frustrated with it at times, but overall things are progressing. Still not getting too much down but did have one great night where he sucked down around 30 ml. That is a lot for him! He averages about 5-7 ml each feed.

Went to the nutritionist the other day and she wasn't too happy about his weight gain. He is weighing 15.10. I think he gained fine but he still needs more food so we went up to 145 ml daytime feeds and 556 through the night. He is burning more calories these days being so active and weaning off the vent. Still working on getting his feeds over an hour. I have him up to a rate of 98 ml an hour with the 130 ml feeds, so it takes about 1.5 hr when it is all said and done. We are slowly getting there. He has actually done well these last few days keeping his food down so hopefully we can keep going up on the rate. He is over sitting so still that long to get fed, but he has to or he gets sick. Once again it is a time thing, but he is getting there faster than I ever thought. Thank you Jesus.....

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!