Saturday, May 30, 2009

1 ML how much breast milk Camden took from a syringe today. It took 10 minutes, but he enjoyed it during those 10 minutes. Then, all of a sudden he wanted nothing to do with it and made this really weird, " Get that thing away from me" face so I stopped. But it was something. Every little oral stimulation helps and he swallowed it drip by drip. Slowly, but he did it.
Had a pretty good day today. Had a few bad gassy spells, but not as bad as yesterday. Nursing hours have been cut, so we are having 10 hr shifts during the week and 8 hour shifts on the weekends. His nurse left at 3 today, so we have been hanging out ever since and will continue to because his night nurse called in again tonight.
Had a few more gagging episodes today, but I feel they are less and not as long. The worst was when I tred to give the paci, but I have to continue to put something in his mouth everyday. I just did it once today for about 30 seconds. I couldn't stand it anymore. He still hasnt sucked, but tolerates it, then just gags. :(
He is snoozing away right now with a stat of 100 :) I am so tempted to turn his oxygen down to 0.3 but I dont need another doctor to tell me, " I know you are his mom but could you please get with us before changing things that we should discuss? " ;p so I will patiently wait until the 8th. He has already set the apnea monitor off twice with his shallow breathing, but that is what I am here for. ;) I still jump each time ( that thing is sooo loud ) but he just sleeps right through....

Thursday, May 28, 2009

God uses people to heal...

that is the sermon I am listening to right now as I start to type. D. Jeremiah is saying that people are sometimes healed by God using medicine/doctors. I thought that was quite appropriate for me to hear this evening ;) and a great reminder that God has healed and is still healing my baby. He has also used some special people to do do this. I think of Camden's surgeon and certain doctors and the wisdom used. Amazing....(as much as it really stinks that Camden has to go through this season, and we so can't wait to be out it, yet are so thankful for it)

and....the pastor ends with " GOD STILL ANSWERS PRAYER." amen.

The nurse called in sick this morning, and then tonight's nurse did as well, so as much as I'd like a nap, I am glad they aren't here with their germies.

Camden had a wonderful morning, then by afternoon everything went downhill. I am learning his different cries and now I am realizing that today's issue was mega gas pains. He wasn't gagging and retching as much so that was good, but boy was he in some pain. He finally relieved himself ( right in front of Miss Nichole ;p) and was kind of more himself, but it took a long time and he was extremely upset. I feel so helpless watching him like that. I started to slow his feeding rate down yesterday and then again today, from over an hour to over an hour and a half and he actually seemed to tolerate that better. He had less gagging, so I am going to keep doing that and see if it makes a difference this week. Sometimes with all his little issues it is hard to tell what is causing what...but I am trying to figure things out. Is he hurting, scared, need to be suctioned, or wanting attention? :0S I will have a lot to discuss at his GI appointment on the 8th.

Later on I tried to do the paci and he immediately gagged then had a bad gagging episode after that. Obviously I knew it was the paci that caused it. I feel so discouraged about his oral aversion and I have to keep reminding myself of how well he is doing in other areas and that everything is going to happen in time. It just gets so frustrating to see him not knowing what he should be doing with his mouth and I get so upset. I had to get over not being able breastfeed and now I am trying to get over the fact that not only can he not breastfeed, but he can't handle anything in his mouth. Speech therapy can't come soon enough because I am so ready to get started with this!

So as soon as he felt better, he was back to his active sweet self. He is trying so hard to roll over and he gets that leg going like a dog scratching fleas. ;p The vent tubes are so annoying and in his way. I finally flipped him over, but I have to hold him because he is too weak to hold his head up long enough to stay off the vent. Then his trach gets pulled on and then he ends up gagging. We need to start windowing off this vent so we can have some more enjoyable tummy time! Can't wait for that day! If he can't window as soon as I hope and pray to, I know Camden will get stronger in time and be able to work around those tubes.
He is starting to pull on things more so I have to watch the g tube or he is going to yank that thing right out of his belly. Thankfully I noticed that the g tube balloon inside had been leaking water because it was real close to being able to fall out. Yesterday he was flipping his vent tubes back and forth and he pops that off a couple times a day too. Just means he is growing stronger! :) He is settled in for the night and I am camped out here in the nursery. Another day of "healing" down.....

Sunday, May 24, 2009

Sleepless nights

but so worth it :) Camden's night nurse called in sick, so I'll be spending the night in the nursery with him. He is being a die hard tonight, just looking around fighting sleep.

He had an okay day today. Still lots of gagging and very gassy today where he'd cry and cry. He did have one bad episode this evening and gave his nurse a little scare, but we got it under control. I believe it was awful gas/tummy pains, which turned into a raging fit (can't blame him!) which turned into him bringing secretions up and then of course not being able to get his breaths. I just had the nurse suction his trach while I held him and tried to comfort him and he finally got his breath and calmed down. Poor baby...

I believe he is tolerating the feeds, but I just know he is in pain sometimes. He still is sleeping pretty good through the nights, but is a bit restless at times. The night nurses are even picking him up now to comfort him because he doesn't seem to be as comfortable. He is also growing out the boppy, but he has to be elevated. I need to get him a special pillow to sleep in.

Can't remember if I mentioned before but his heart rate has gone down too. This is such a praise because it has been way too high hanging out at 170-190. After he was home for about a week it started to go down, and now sometimes is anywhere from 130-145. His little heart has been working so hard and I just praise God he had a strong heart through all this. I am just glad his little heart is getting a little break. :)

Thursday, May 21, 2009

4 mths olds

well, tomorrow, but I couldn't think of another title ;)

Camden has had a good week. Getting used to his baths and pitching a good old fit during trach tie changing which reminds me of how strong he is getting. He has even ventured out to the living room twice now and we are going to start making that a daily field trip for him. He loves his Pooh swing and doesn't cry over TV like he did the first time the Baby Einstein video blurted out " DOG " ;p

My goal is to work with him orally everyday. I have started giving him a drop of breast milk from a syringe or breast and he really likes it for 5 minutes and gets really excited, then kind of gets over it. He is swallowing it and tolerating it, so that is good. Today he gagged because I put in about three drops by accident, and it was just too much. I told him he really needs to work on this oral issues because at this rate he'll never get through a feeding. ;) Unless God has other plans, IMO he'll get rid of the trach before the g tube is gone! Long way to go, but it is something I can start doing until speech therapy comes which isn't for another month. :(

He is still sleeping right through the night and sleeps a lot during the day. He is growing like a weed! Nana came to see him last night and is here with us now so he is enjoying her. He loves his Nana.

Friday, May 15, 2009

First car ride and doc appointment!

And we survived. ;) We actually did very well for our first time, and a nurse came along for an extra hand. Next month we have 5 appointments without a nurse, so I am glad Marcus and I got the practice! Everything went well, and we only forgot the g tube! Thankfully the doctor got an extra one for us so we could do his 9 am feeding when we got there. The RT said we did well since we had all the rest of his equipment since breathing is more important than eating. ;p

He saw the pulmunologist and GI today. Gaining weight like a champ, now up to 13.10. We are trying him back on zantac since I shared my concerns with the gagging. With the nissan surgery he had he can't get food up which is good because we don't want him to aspirate. The reflux is so bad he gags and gags to try to get things up, but can't and eventually it just passes after a minute or two. It is really sad to watch him though. Hopefully the zantac will help with the acid. We are keeping the feeds almost the same with a few adjustments in the scheduling, but the same amount.( which I am happy about since I feel like a walking cow and am just keeping up pumping for the little piglet )

The pulmunologists wants to wait until his next app to talk about windowing him off the vent. I was anxious to get started, but we don't want to rush things. He also talked about lowering the rate next time. We will see him again in three weeks. All in all, Camden has done wonderful since he has been home.

The car ride didn't phase him one bit today. He was a sweet boy as usual! Happy with everything. Peanut was so excited to see him in his car seat and kept asking him if he likes the new world he sees. Precious...
So, we need to practice a bit more and the appointments next month will be more than enough practice time!!

Last week I tried tummy time with him for a few minutes and I was so proud. After laying so long in the hospital bed and not having any time to exercise that head, he did so well! It was a bit difficult with the vent, but we managed to position him just right. Then I had to cover the vent with a blanket because I was scared his head would flop on it and there are some sharp knobs on it. Kind of a hassle, but I wanted him to try a new position.

I have been trying to give him some "boppy free" time too....he hated it at first, but is getting used to it now and even fell asleep the other day....

Sunday, May 10, 2009

It's a slumber party! ;)

We will be nurse less for 24 hrs. The last nurse left this morning at 7am and the next will come tomorrow morning at 7am. So Camden, Jesus, and me are having a slumber party in Camden's room tonight :)
We have had a great day. It was a wonderful Mother's Day. I actually have enjoyed the privacy without the nurses, but know I will appreciate when the next one comes. It is nice to know that when I have to leave the room there are constant eyes on him and I need to take advantage of this while I have them for the next three weeks.
Camden is still gagging bad every few hrs, but I can't pin point when or why, so I am thinking his reflux just acts up whenever. Other than that he looks great. Just full of smiles through all of this....he is such a little blessing.


Saturday, May 9, 2009

Long and wonderful week

the empty bed space :)

ready on the stretcher

Camden's first week home has been great. He adjusted with out any problems. The ride home was fine, he was fine with all the action, and he loved his family surrounding him. I am feeling more comfortable each day with him. I have had a nurse here with me, which is a huge help as I get adjusted to our new life. :) The nurses have been very nice, and are just an extra set of eyes which gives my a little extra peace. I have even slept more than I thought I would at night and pop in to check on him during my pumping times. ;)
He seems like he has made progress in just the few days he has been home. Still having some issues with the gagging, but it isn't always just during his feedings. I am thinking his reflux is still pretty bad, even though I know having the nissan surgery done helped tremendously. They took him off his reflux meds so he hasnt been on anything for it so I need to look into that. Other than that he seems great. We haven't had any episodes. The worst fit he threw was tonight while changing his trach ties. He was just down right ticked! But he recovers so nicely and I just thank God for this huge improvement!!

I have never seen my kids so excited .... they were so hyped up waiting for him to come home as they stood in the driveway waiting for the truck. They constantly asked to hold him to where it is starting to drive me crazy, ;p but at the same time fills my heart with joy that their baby brother is home to hold. Thankyou, Lord!

Tuesday, May 5, 2009

Camden's LAST night

I am still in disbelief. After three and a half months it is here! Mom and I tucked him in tonight for his last night. I haven't had a minute to get on here to update- but we roomed in two nights over the weekend and it went great. I had the best time holding him and doing everything for him. He is a bit more work but I love doing every bit of it. I am so ready to have him home. God's timing is perfect. Things are going smoothly, and he should be home before lunch tomorrow. We said good bye to some very special people tonight. They will be missed as they were a huge part of our lives during the last three months.
They are taking him home by ambulance tomorrow so no red wagon, but we did take his stuff to the car by wagon tonight. ;)
Big day tomorrow....Im so excited that I am going to have my babe home!