Tuesday, December 29, 2009

Weekly Camden update and Christmas time





Christmas morning started out with Camden pooping through his cute Christmas PJs so he couldnt wear them. Doesnt that always seem to happen? So small in the scheme of things, but come on! ;)
He basically just sat at his Nana's feet ( my parents spent this year at our house) watching his siblings. Wanted no part in his gifts, and actually kicked them all away. Once they were opened he loved playing with them. During this season I cant begin to tell you how many times I have thanked the Lord that I had my baby here for his "first Christmas". That was one of the greatest JOYS of this year along with celebrating our Savior's birth and how he came to save us!

Did you know that having Camden NEVER gets boring? ;) The other night we had family over and we were having scrabble wars. Yes, major geeks and we were really getting into it so we were all passing Camden around in between hooking him to feeds, suctioning, playing our turn, breathing treatments, etc. Later that night I had him in his room and my husband brings me Camden's mic key button feeding tube, still inflated with water. Camden either stepped on it, his brother accidentally pulled it out, or he stepped on it, but the hole in his tummy for it was pretty much closed. I dont know when it had happened but it was somewhere in a 3 hr time frame. ( the last time it happened I watched it pop out and I slid it right back in) I got it back in after about 5 minutes of trying and it not budging until I used a thermometer to re open it. ( gosh I really hope his doctors arent reading this ) but it worked and I didnt have to go to icky ER. Camden did great during all this. We normally do not leave extensions attached to it, but we did this time. We just cant do that anymore with him being so active.

His pediatrician brought his RSV shot on Christmas day. I was so sad for him, but glad he didnt realize that I was mean to allow that to happen on that day. ;) She called and was on her way to the hospital and wanted to get it to him, and he needed it. So we did it. He did well and had no side effects.

He is a whopping 18.9 pounds as of today. I was surprised because while he was sick he lost a few ounces. He is still on oxygen during the night so Im not quite understanding that unless the common cold just kicks his butt like this. He does great during the day, but as soon as he goes to bed his o2 levels drop. He sometimes just hangs around 88. We are just giving albuterol here and there again and o2 as needed.

He is tearing up the hallways with his walker and it makes me laugh so hard. So interested in crawling, just still so nervous and not quite strong enough. He just pivots in sitting position and eventually gets to the toy he wants as long as it is somewhere in a 2 foot range.


Happy New Year 2010 to all!!

Monday, December 21, 2009

First sickness



this stinks! ....but it had to happen one day, right?
Sick free for the first 11 mths of his life. I am extremely thankful.
He had fever off and on yesterday which broke on its own and he is very runny so we are suctioning A LOT. Not quite himself but being a trooper as usual. ;)
He has needed oxygen the last 2 nights also. I am hoping we can lower it tonight to .12. He hasnt needed it through out the day.
Gaining weight like a champ. Over 18 pounds now. Loves his walker too. It is taking him a while to get the full hang of it but it is pretty hysterical watching him. I'll have to make a video of that soon.
Not getting anywhere in the oral eating department and with being sick, I havent done much of anything with him in the last few days.
Looking forward to my baby celebrating his first Christmas! Thankyou, Jesus.....

Saturday, December 12, 2009

Well......

So I took Camden in for an xray today. Lately he hasnt been himself, but it is off and on. Not his normal happy/active self. He hasnt been sick, no fever, secretions normal....Been going on for maybe a little over a week and I kept wanting to call, so today I finally did. I just wanted to make sure he didn't have any lung/diaphragm issues going on. Everything looked ok, so Im not sure what it is. I felt kind of silly, (of course relieved though!) when I got the call that the xray didnt show anything. ( does that make sense? ) He has been wretching much more since his surgery, but that could be from the nissan wrap. I wish he could tell me how he feels. Poor little man =( He seemed more himself today, so we shall see.

A few updates =)
we have worked up to 112 mls an hour and he gets 180 mls, three x's daily and 560 mls continuous feeds through the night.

We are fortifying the breast milk and formula and he has reached 17.11 so finally gaining again!

Thursday, December 10, 2009

Got oral aversion?

thought Id share a little clip of our oral aversion world. This video is mild. ;) He sometimes goes into screaming fits and wears himself out. The OT came last week and she is wanting to help in the oral area. It did not turn out so well, but we must keep at it. ( as much as I want to just run away from it at times! ) He usually hates the highchair, associated it with food, so I am putting him in it more. Today I just dropped a spoonful of applesauce on it and he wasnt happy. I made him taste it ( you wouldve thought I gave him straight up lemons ) then dipped some toys in it. He basically "ignores" the toys. lol Wont touch them with food on them. After a about 5 minutes I cleaned it and put clean toys on it. Then he was a little booger, happy in his highchair again. I want so badly for him to eat one day, but it is hard to watch him get upset. I feel like Im torturing him! ;0s

Thursday, December 3, 2009

It's official

The medical supply company just called and asked to come pick up the ventilator. It is really that time. Camden is off "life support" all together. He was on this vent for the first 9 months of his life, and now it is really over. It has been almost a month since he has been totally off the vent, and he hasn't needed it again. I am so very, very thankful to God at this moment....












Right after he was off ECMO












After trach surgery








Tube free!!! ( well if you dont count a trach as a "tube" ;p)

Sunday, November 29, 2009

Teefers and weight gaining

First of all Camden was a gem for his first Thanksgiving. The night over at Papa and Nana's place went just fine. He is such a good babe!! Was overwhelmed with different people at times, but once again did much better than I expected. :) For a minute there we thought he was interested in my plate during Thanksgiving dinner. Come to find out he worked up enough nerve to touch the food so he could throw it off my plate. Still hating the feel of the food. Any food, although he licked a graham cracker last night before getting angry at it. Ya never know...

We have teeth! Last week they started poking through on the bottom. One on the bottom is officially in and the one next to him is on its way.

The fortifying my breast milk is working, and maybe too well. He went from 16.13 to 17.3 in a week. Im going to weigh him tomorrow to see what he has gained this week. He is getting breast milk through the day, and I am giving half and half through the night. Im just going to do a slow wean through the winter months.

Hasn't needed any o2 since that last episode, and continues to do well off the vent. Tuesday will be 3 weeks off....I believe we are DONE!! Praise God....

Tuesday, November 24, 2009

Thanksgiving and busted g tubes =p

Ok, so I'm thinking that when I accidentally yanked the mic key feeding tube out last week I started a slow leak in the balloon because today his onsie was totally wet with milk. The balloon had busted and had fallen completely out. It wasnt out too long because I got it right back in, but it took a bit more effort. So I have it taped to his belly and I'll get a new one from the pharmacy tomorrow. All my back ups are his old size, so that stinks! At least it is in and didn't close up this time. I will avoid any ER trips if I can....

He hasnt needed 02 again. I am thinking the J bunn (machine that give his trach moisture so it doesnt get dried out ) wasn't giving off enough flow. I kept it off him the next night and he did fine, wo we have had the flow turned up.

We are heading to my parents for Thanksgiving and staying one night. This will be Camden's first time traveling over night. Well unless you count when our house flooded, but that was just across the street. ;) It should be fun and interesting. I feel so blessed that he is now well enough to travel. No worries about vents and oxygen. I have 2 little o2 tanks just in case, and we are good to go. Well, along with all the "bags" that a trach baby needs. I call him "just a plain ole trach baby" now. ;p Nice to see things slowly leaving....

BLESSINGS TO ALL AND HAPPY THANKSGIVING! GIVE THANKS TO THE LORD FOR HE IS GOOD!

Wednesday, November 18, 2009

Needing to gain weight

not me, Camden ;)

Went to see the nutritionist and surgeon yesterday.
Surgery was just a follow up and everything seems fine. Had an xray while there, which are always fun and consist of Camden having a major meltdown. I dont blame him. We wouldnt want to lay there naked either. We have to have another xray along with an echo in Feb, then will see surgeon again in March.

The nutrition was kind enough to squeeze me in yesterday. Camden is not gaining, and being off the vent burning even more calories is not helping. We are now adding formula to my breast milk. Plus I am having to supplement some, and we are extra formula to that. Will see how this goes. She didnt want to start pediasure since he isnt quite a year.

I have decided to cut back on my day nurses. This will start in December. I have been very blessed with my day nurses while I needed them, but it is time that I have a few days alone. I have been thinking about this for a few months now. I think the kids need this too. I am cutting out Tuesdays, Thursdays and Sundays, and went the vent leaves the house for good, the day nurses may be gone altogether. Night nursing on the other hand, I want forever.... ;)

Tuesday, November 17, 2009

not sure what happen with that last post....

but here it is from Nov 15. That was weird...
Camden has done great with the PMV. When we put it on the first time he had it on an hour before we took it off for nap time. He has tolerated it well with out any issues. Very exciting to hear him. He groans a lot. lol Then he'll just be quiet. He sure can whine and cry with it too and is realizing that mommy reacts to it. ;)
Continues to do well "vent less." Tonight is my first night without a nurse wince he has been off the vent, so I have been blessed to get some rest while he has been watched. =) Daddy and I will be taking shifts again.

I am thinking of slowly weaning him off breast milk with pediasure. I will pump through the winter, but I am getting so done. It is wearing on me and my body is making less and less with more pumping. He will be 10 months old soon, so I will start mixing some pediasure with the bmilk and have him on pediasure by 12 or 13 months. I pray he tolerates this.....
Well, this is the plan anyway =)

Thursday, November 12, 2009

PMV time :)

The ENT visit went good. Dr. says there is still some floppiness in the airways. We are trying the passy muir valve tomorrow and I am super excited. I just called the Camden's RT to tell her how anxious I am and she said she'd be there at 1:00 so I didnt have to wait all day. ;) she is great...
Dr M just said we just continue to go through slow steps ( i told him i am used to that) to work towards getting trach out and that Camden needs to grow more too. I keep in mind that it is flu season and that there wouldn't be any trach removal now anyhow.

So tomorrow is an exciting day and I hope Camden tolerates the PMV. I can't WAIT to hear my baby!!!!!

Camden went out to lunch today! I dont go in public ( besides drs ) in fear of germs, so this was huge LOL I had to go get my other kids from Nana and we met a a little family owned diner. As soon as I walked in a man started to cough and I wanted to run out but I believe he was choking on his drink. lol not funny, but it made me feel better. ;) Mom sanitized a table in the corner, and we used purell 1,000 times, but we had a nice time. my kids were over-the-top excited to see their baby bro.
It was interesting to see how people act when they see Camden. I had to suction him a few times and no one could see me doing anything because I had him turned around, but you could tell on their faces they were so curious. I know people arent trying to be mean, it is just they stare. And stare some more. Not just 'checking things out' staring, but 'staring in between taking bites' staring. I try to put myself in peoples' shoes that aren't familar with the situation, but it is difficult. It is what I know now, so it is hard to remember that there was a day that i wasnt familar with trachs and g tubes. ;p I do understand the curiosity, I just get emotional about it at times.... ;)

Feeding is slow going. I am slowly increasing his rate on his feeding pump, but he seems to be wretching more. It is not just food related either because he does it in the mornings over secretions. Reflux, food, secretions...poor thing has many reasons to be wretching and gagging. I have wanted to rush things so badly and the other day I was thinking about it and trying to realize that I need to be patient and be thankful that there is a way that he can get nutrition, even if it is through a tube that goes in his stomach. I will continue to work on oral feeds and slowly the rate will get faster and one day he will eat on his own.....

Speaking of his feeding tube, bad me accidentally yanked it out last night. It has fallen out before due to the water balloon inside is tummy leaking, but this time the balloon was still intact and I pulled it right out of his tummy when I was getting him out of his saucer. ouch! I felt soo bad although he didnt seem too upset about it. I quickly put it back in ( last time it fell out during nap and the hole closed and we hadto go to ER )while thinking how the ER was the last place I wanted to be last night. It went right in everything is fine.

Cant remember if I mentioned it, but he is doing great off the ventilator with no issues. I have been giving him humidification here and there with his J Bunn but he doesn't seem to require too much. I think the weather change may change that but we'll figure it out as we go.

Tuesday, November 10, 2009

Bye Bye Vent

We are so thankful that we had you for the last 9 months, and yes, you were a huge part of the lifesaving, but you are not needed anymore. ;)

I am overjoyed about this. Thankfully Dr H agreed to take Camden off the vent. All day, all night, all the time. He has been on during nights only, and on ridiculously low settings, but with this surgery setting us back it has felt like fooooorever. I just am over the long weaning process, and was glad she was considerate to my opinion. I think back to a day and remember thinking we'd never get to this point and here we are. No words can explain.....
So tonight is his first night off. Eek! Im excited, but I may be awake a lot checking in on the nurse. ;) I know he will do fine.....

Tomorrow the ENT. This is an exciting week. :)



Praise God from whom all blessings flow.

Monday, November 9, 2009

Doing well :)

Camden is doing great. Everything has healed nicely without problems. :)

We just got back from the eye doctor and he says the eye looks good besides a little astigmatism so he wants to see him in a year.

Today I reintroduced cereal since before surgery and after the first bit he was over it. That was all I could get down him without him melting down on me and as soon as I stopped he was happy. ;p The cool thing is that he was touching the cereal on the spoon! And kept touching it! He also licked a cookie the other day. He eventually gagged over licking that cookie, but these are tiny steps forward.....

Now that his tummy should be feeling better I need to call the OT and get him back on his therapy. He is no where near crawling or standing so we need to start working with him now that this set back is over.

Tomorrow is the pulminologist. Hopefully we will be completely weaning off the vent. :) Then Wednesday we see the ENT and hopefully will be getting a passy muir valve. Hopefully he will tolerate it. Have a feeling he will be fine. ;) Im so excited!

Thursday, November 5, 2009

Home sweet home

This is him the day we were admitted. He completely freaked with all the people...meltdown after meltdown that first day! Him and I both were broke out with hives... :s He is happy in this pic because they were all out of the room! ;0)

Lots to say for the week that has gone by so I'll try to skip all the details so this isnt forever long...

We were discharged Tuesday and he is doing well.

We were admitted to the hospital Thursday afternoon and the cleaned him out with the Go Lightly ( nothing light about it) that night. He actually did very ok with it, of course nothing fun about pooing all through the night, but he tolerated it well.

Surgery was last Friday and was a success. Not only was part of the colon in his chest, but also his pancreas. Geesh. His diaphragm was patched again with gortex. But all went well and precious Dr W seemed pleased. His Nissan had also started to unravel so she went ahead and dealt with that too. He was circumcised ( which I was feeling guilty for doing to him afterward! ) and then Dr P was able to pop the clogged tear duct without needing a stint. As sad as it is, it took me a few days to get used to Camden without goo in his eye.

Had a rough night surgery night and then the next day too.( to be expected, of course) The cool thing was he was off the vent right after surgery and just on a little o2. His trach site was sore from the OR and he had some bleeding from it. Had some bad gas episodes and Im know he was in pain. He would scream when we changed his diaper. It killed me to watch him like this with that look like, " why are you letting them do this, mom??" I think the worst for me was when they wheeled him off for surgery. Third day post op he was a different baby and wanted to sit up. He didn't like me keeping him down either. He had lots of visitors from the NICU. It was great to see them.
He is such a strong boy. He is doing good now but has been really emotional. Yesterday I basically had him on my hip all day. He is not trusting anyone right now probably in fear of getting stuck! He even cried for his nurse that he loves at first, but warmed up quickly to her.

I can already see the difference in his feeds and he is handling then better. We will start slowly working on faster feeds now. I haven't given him any cereal or a bottle because I haven't wanted him to gag and hurt his tummy, but I need to get started soon.

Thanking the Lord this hurdle is over.... :)

My camera and computers are having issues so everything is phone pics!




headed to surgery....had to wear the dreaded yellow gown because he is forever labeled ORSA! ;)






right after surgery ;(













and his booboo. She just went in through is old scar, of course.


I just realized this pic is up side down....hmm






thank you for all the prayers......God is good, all the time...

Sunday, October 25, 2009

waiting

Getting closer and I have been getting butterflies every now and then. =) Wow, I cant wait until next week, then surgery will be over.

Same ole' around here, just waiting. Camden seems to be wreching a bit more, so I know he is ready to get his insides back in place.

"They that wait upon the Lord, shall renew their strength. THey shall mount up with wings as eagles. THey shall run and not be weary, they shall walk and not faint. Teach me Lord to wait..."

....somewhere in the Bible ;p

Sunday, October 18, 2009

Surgery is October 30th

We will be going in the hospital on the 29th so he can get cleaned out and ready to go....

Looks like some colon is behind his heart. Dr. W will be patching his diaphragm with gortex again and we will think about doing a more "permanent" surgery when he is older and stronger.
For now focusing on getting the intestines back where they should be.

They are not concerned with his testes at all right now.

Increasing his milk helped and he gained 7 ounces this week. :) Up to 16.11

Still the same orally, although he did lick a piece of my ham today. Weird. Of course he did start freaking when the tiniest piece broke off into his mouth ... I was quick to get it out. But for him to lick something other than plastic or cloth is huge.

Short and sweet, need to settle in for the night. If you remember, please keep Camden in your prayers with his upcoming surgery. Thank you :)

Monday, October 12, 2009

Well, they're movin on down.... ;0)


Today we went to urologist and optimologist.


The uro. explained that if the testes were up in the belly somewhere, the surgery may be more involved and he wasnt sure if it was wise to do it at the same time as the diaphragm repair and compromise Camden's recovery. I totally agreed, but of course was wondering about Camden's future with waiting later to do the surgery. Long story short, after we discussed the situation he took a look at Camden and he felt the testes! They were down there, not all the way where they should be, but down there! It now wont be a two step procedure and we are super excited. :)


He had his eyes checked and he is getting the tear duct fixed. He had his eyes dilated because they want to make sure he eyes were healthy first, and they were. Poor Camden looked like he was on something the rest of the day. He was exhausted and fought sleep all day while we were at nemours, but came home, took a nap, and was back to his precious happy self.

The eye doc is pretty open to be there when Camden goes in so we are now just waiting on the surgeon to set a date. Hopefully we can find out a date soon....










Thursday, October 8, 2009

The Family Jewels have been found...

blood results say there are testes :) What a relief!! Thank you, Lord. One less thing to think about. So when he goes in for surgery they will be umm fixing things in that department.
WE go to see the urologist on Monday to discuss details.

Tomorrow Camden goes for a barium enema. ;( Guess the upper GI didnt show enough. That stinks. I hate for him to go through these tests.

One blessing is that he hasnt been wreching and throwing up anymore than the normal. Actually has just been wretching lots and just throwing up secretions, so not losing calories which is a huge plus since he had not been gaining. I have been sneaking a few mls here and there for the past few weeks and he is starting to gain now. Of course that is making it more difficult for me to keep up with the pumping. :-o It is getting tough...

We are slowly but surely getting things in order to prepare for these next few weeks.

Oh, Camden is clapping! So precious. I sometimes just bawl my eyes out thanking God for his brain function. Being on ECMO for three weeks was such a concern in this area. ( along with many others) He is a smart little booger. ;)

Thursday, October 1, 2009

No More Daytime Vent, Nebs.... and more

Since Monday, Camden has officially been off the ventilator all day. Just goes on at nights and we will chill with that for a while and not stress him before surgery. He is doing great with it.
He is also off his albuterol!! No more neb treatments. It is such a small machine compared to most of his things, but it felt great to pack it away. ;) Im just so happy for him...one less thing for him to deal with. =)

We had the upper GI last Monday too. I am still waiting on the blood work results from last week concerning his testes. Hopefully they'll call tomorrow since I have called the last two days. We still go to see the urologist and eye doc before finding out when surgery will be. He is on a slow rate of 80 ml an hour and doing better with that. Having some bad retching moments, but it isn't every feed. Bad days and good days. Breaks my heart to watch it though. I can't wait until this hurdle is over.

Orally he is doing awful. That is basically it. I have been so upset about it and it seems to be getting worse. I try cereal everyday, and he seems to hate it more and more. He is gagging worse now. Today he just lost it and once he gets crying over it there is no more trying. Plus we want to make it a happy time, but how do you do that when he is freaking out and dry heaving ;s ? It seems like such a long road in the eating department, like he will never get there. His spits out pacis and bottle feeding is pretty much a joke too. Now with the surgery I am afraid getting off track with things is going to be a maojor setback.

For now he is hanging in there before getting his diaphragm repaired. He seems to be attached to the feeding pump most of the day and night, but that is what we have to do for him to be able to tolerate it and maintain his weight.

This evening, Marcus and I took the kids on a bike ride in the neighborhood. Camden loved his stroller ride. The weather was so cool and nice and he was just checking everything out. Never fussed and was a sweet boy. Thankyou God for giving me this joy in my life!

Tuesday, September 22, 2009

A Happy 8 month birthday....

Well it didn't turn out to be the best birthday for him. ;s We went to see Dr W today and after an xray she found that he has re herniated. Part of his intestine or colon is trying to move back up through the gortex diaphragm into his chest. I had a feeling this was happening with him not being able to tolerate the faster rate of food, but it hearing it today was difficult for me. His testes haven't dropped, he has a clogged tear duct, and he needs to be circumcised, so we are trying to get things in order to do all of it at once. So, busy weeks ahead to prepare for surgeries. In the mean time we will continue to feed at this lower rate and pray he can hold out to get things in order.
Camden is definitely not acting like himself. It takes a lot to get him to smile when normally I cant get him to stop! But he is a trooper as usual.
Well, it was a nice hospital free time while it lasted. ;) Tonight I am thanking Jesus I have Camden home and healthy enough to be able to even have surgery.

Saturday, September 19, 2009

A few steps back....

in the feeding department. Camden still wasnt tolerating his 9am feed, so we have slowed the rate and started an hour later to let his stomach have even more time to digest the continuous night feed. He hasnt vomited like he did since we have done this, so it is helping. Maybe his nissen ( surgery he had to stop things from going up the esophagus) has unwrapped completely or maybe his reflux is just getting worse? He was tolerating feeds better before, so something has changed.
:( Feeding can feel like a daily battle, but I have to focus on the fact that is getting in and he is digesting most of it and still gaining. I am still working with the bottle and cereal and things havent changed much with that. I do know that the little cereal he does get down is more than he does when sucking the bottle.

He is still supposed to be on the vent at night and during the long day naps. It is starting to not be that way. The day goes by and sometimes it just doesnt work out to put him on. It is like you dont want to interrupt him when he finally passes out, or you think he is just taking a cat nap and the nap ends up being his long one. I have many excuses to give Dr H. ;) Usually he goes on one time a day for a short time and he has been on EVERY night. I am obeying in that department. :) We go back to the pulm at the end of the month to see the next step with the vent.
Anyway, he has done well. Not one disturbing episode. God is good and I cant think about it without crying. My little miracle.

We are just hanging out as a family minus Micah tonight. She went home with Nana. Our regular night nurse who we thought was gone for good is supposed to be coming in at 11pm tonight. Supposedly she will work some nights for the rest of Sept, then will not be doing night shifts anymore so we probably wont be seeing her much after that. We will miss her! Very difficult having different people coming in and out every night, but God will work it out. My day nurses may be gone in a few months, but he should have night nurses much longer. I pray that we will have a couple of regular nurses so he doesnt have to wake up to strangers.

This week we go see Dr W his surgeon and will be checking out his diaphragm. We also see the nutritionist so maybe we can think of a better eating plan. And I spoke too soon, he just threw his dinner up so I guess it isnt just breakfast. :(
Busy week, so I may be slacking to get on here but I will try. Thanks to those who continue to pray for us.

Sunday, September 13, 2009

Restless ....

Tonight Camden has been squirming for the last couple hours. His reflux is acting up which may explain why his day feedings have been worse the last few days. He is still having issues with the morning feeds too. Threw up some of his breakfast again this morning, but not as much as he did in the last few days. He also had a hard time during his lunch today with lots of gagging and retching, but it finally passed and he held the food down. I hate to see him suffer and I feel like I am force feeding him!! It feels like a losing battle at times. I want to cut back on feeds but can't or he'll start losing weight and he is just gaining what he needs to as it is. We are now at a rate of 112 ml an hour and he takes 145 ml so it is taking about an hour and 10 minutes to feed him during the day. Feeding is such an ordeal. ;( I think I am going to hang out at that rate for a while and let him adjust to it for a few days. He is still on a continuous feed all night and still does well with that.

I am being more aggressive with the bottle. I got 15 mls down TWICE today singing this song like 15 times in a row :

"Jesus, Jesus, Jesus.....there's just something about that name. Master, Savior, Jesus, like the fragrance after the rain. Jesus, Jesus, Jesus, let all heaven and earth proclaim...Kings and Kingdoms will all pass away, but there's something about that name....."

I have to keep his attention! =p We sing this all the time. This is one of the songs I used to sing it to him when he was in the hospital when he just lay there with his eyes closed. I just sang when I didn't know what to say anymore. =)

Our night nurse called in again. The one that is here the most and the one we love! I hope she is ok...we haven't seen her in over a week. =(

Saturday, September 12, 2009

another week gone



that is what I am feeling like lately. The weeks are flying by. Normally I cant stand it; to see my babies grow so fast, but I am loving it with Camden. Means he is getting stronger and closer to being trach free. =)





Eating: He has thrown up his breakfast the last two days and it was almost all of the feed. Not understanding this. He held down the other feeds, so I am trying to figure this out. And it isn't gag related because it wakes him out of his nap sometimes. I am going to try to give him his zantac an hour before his morning feed, but other than that I am at a loss.


He is still gaining, and last week weighed around 16.4.





I am trying cereal everyday and he tolerates more and more each time. Ends up getting about a tablespoon down. He tries to ignore me the whole time but tolerates me gently force feeding him, lol, then he will let me know when he is done by shaking that head NO! Bottle feeding is still the same. Sucking but not getting any down. Still at 5-10 mls, but sometimes only one. Looking like he may skip bottle feeding and go straight to spoon. By the time his suck gets stronger, he will be getting older and older and ready for sippy and spoon anyway. We shall see...we never knwo from day to day!





We are enjoying him so much. This age is so fun. He be 8 mths on the 22nd. He loves playing silly games with us like bumping our heads and he is always laughing. It is silent of course, but is looks like a big laugh and I can just imagine how it would sound. =p He is always making us laugh!





Our night nursing hasn't been great. ( To the point where we thought about changing companies but we didn't want to have to go through all new nurses because our day ones are great!) We would be OK if we knew the night nurses were calling in, but when you aren't prepared and you find out a couple hours before they are supposed to come, it gets frustrating. The first night is OK, but when it happens the next night and once again, you aren't prepared, you feel like you wanna cry. Marcus and I still do shifts, but with pumping my sleep time gets less and less and I am sure there are times my kids wished they weren't home schooled stuck in the house all day with zombie mom. =p Thankfully this week was better and I seem to have more coverage. The other difficult thing is dealing with new nurses. You get so comfortable with your main ones and when they have to call out you feel like you have lost a friend. ( my how life has changed )


And did you know that they actually will send "whoever" out just so you have coverage? ( when they can actually find coverage ) then you cant sleep anyway wondering who is spending the night with you. So, I have pretty much kept my mouth shut about the nursing situation on this blog, but that is how things are going in that area. =)


After getting so irritated about things, I started to think about how blessed I am to have Camden here to be able to deal with night nursing problems! =) woohoo!!!

Please pray for baby Mack and the rest of the Harrington family as they are going through a rough time with Mack being sick in the hospital....

Sunday, September 6, 2009

Lots of updates :) and pictures

the brothers :)





coffee drink as big as his head ;)

Loving the park







about to say good bye to the bouncy seat!





First off, we went to the ENT last Thursday. Dr. M walked in with the nurse practitioner and called Camden a "miracle child". How true that is and hearing those words just made my day. He is such a miracle! Everything looked good and if things continue to go as they are, we are still looking at getting the trach out during springtime. We need to get through this flu season first and of course wean completely off the vent.


He rolled over this weekend! He has been rolling from his tummy to his back, but finally did it from back to tummy. Hasn't done it since, but now we know he can. I believe his right arm gives him a fit, so he cant move it to roll on that side, but he did roll to the left. His bad arm is the one that looked awful while on ECMO and I dont know if that has anything to do with it, but it is his weaker arm. He definitely has problems with it. When he is having tummy time, that arm cant hold up either and he cries. I sometimes wonder if it hurts him.

Camden is pretty much sitting up by himself now. A bit wobbly, but can sometimes stay up on his own for a minute or two. His core is getting stronger each day.



He has taken a few steps backwards with the bottle feeding. THe last two times have been unsuccessful. He actually cries and shakes his head NO. I am not sure what is happening there. He seemed like he was making good progress. A speech therapist is coming to evaluate soon, so hopefully she can give me some tips.


We took him and the kids to a park on Friday. It was our first real outing together besides when we took him to church last week. It was a nice, overcast day and the weather felt nice. Camden loved it! I got some nice pictures of all my kiddos together and I immediately starting thinking about last Easter when Camden was still in the hospital and i had to take pictures of them without him. I remember holding the tears back trying to be strong for my kids. I had driven to my parents house ( they had been spending the week there ) to see them and be with them for the day. I was so torn because I had to leave Camden all day in the hospital, but yet I had promised my other kids I would come eat Easter dinner with them. I sometimes get emotional when I think of it, and I just thank God those days are over.
























Monday, August 31, 2009

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.














Friday, August 28, 2009

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 =)

Sunday, August 23, 2009

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.

Wednesday, August 19, 2009

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.....

Friday, August 14, 2009

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.

Monday, August 10, 2009

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. :)

Wednesday, August 5, 2009

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!









Thursday, July 30, 2009

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....

Sunday, July 26, 2009

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.

Wednesday, July 22, 2009

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. =)

Tuesday, July 21, 2009

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 .....

Monday, June 29, 2009

June is .....gone

Been a while since my last post, but it has been busy. I have actually had better night nursing so haven't found the time to be on the computer. The night nurse called in last night, so here I am.
We are in the process of cleaning out this house so Marcus can do the floors and some other things.

Camden has had a bit of a rough week, but keeps on smiling. =)
He has been retching and spitting up after some of his day feeds. Back to that again, so not sure if his Nissen is unraveling or what.
Saturday his balloon in his Mic key ( feeding tube ) deflated and fell out without us seeing it. The nurse tried to get it in and completely closed. I dread dealing with that, so I was glad she was here to try. I can handle his other issues, but that thing gives me the willies. We took him to the ER and they couldn't get it back in either, (sigh) so they have a temporary one in until I can get in to the surgeon today. Today we are also supposed to move over to the condo and have the oxygen tanks transferred over there too. I am thinking I need a few extra hours added to the day.
He did go to see the surgeon last week and everything looked good. She didn't want us back for another three months, but we are going to have to squeeze in a visit today. I can't wait to get his normal feeding tube back in.
I also noticed a funny smell around his trach. ( yuck ) They cultured him at his last pulm app. and found that he had some "staff aureus". He isn't sick from it so they are leaving it up to him to fight it off and he has been fine and symptom free.
We also went to the GI and she increased his feeds.
He now gets 120 mls three times daily, but we are supposed to be working up to 130. I am nervous to continue to increase with his gagging returning. He continues to get 510 mls continuous feeds during the night and still tolerates that well.

We are still weaning him off the vent twice a day, and he is doing great. Doesn't seem to phase him. I praise God for that....

He is sleeping peacefully right now...... my sweet baby......

Saturday, June 20, 2009

A little vent free time?

Appointment went okay other than Camden pitching a fit. He has done so well at the doc apps, then after Thursday's experience he is officially over them and lets us know. ( that is another story, but he saw a develp. doc on Thurs and he was ringing bells in Camden's ears and after that he was a grouch the rest of the visit ) Anyhow, today was the pulmonologist and we did a trial run for 25 minutes off the vent and Camden did excellent! ( after his fit ) We are now going to take him off the vent twice a day for 30 minutes each time. Not much, but it is a start! They didn't lower the vent settings. There was an area of concern on his good lung right before he was discharged from the hospital so the pulmonologist was concerned. The RT is going to come here a week before his next appointment and lower the vent settings, then at the next app they will xray him to see how his lung responded to the lower settings.

In the meantime, when I can take him off the vent for that little time, I feel like a free bird. I did it this evening for a few minutes and the kids were so excited you would have thought I brought another new baby home. ;) "Can I hold him without his tubes?" were the questions from Micah and Peanut.

We are also having to pack up and leave for a couple weeks while Marcus is here doing the floors. (Thankfully the insurance company thought it was needed!) He is also going to do some other much needed house improvements while we are out. We are also hoping to get a new drain field so this doesnt happen again! Lots to do to get things up and off the floor and to get nursing care and other things in order to move Camden.

Once again, the early hour blogging is because my night nurse called in last night. Mom is here and actually took the first shift so I could get a nap in.

Tuesday, June 16, 2009

Short and sweet...

that is the plan for this post. I am tired and in need of showering.....
Camden was fussy this evening and I couldnt wait until our night nurse showed since marcus was busy. He was upset, hungry, and I still hadn't changed his trach out and it was 9pm.
I started to think he wasnt feeling well. As soon as the nurse came in he was all smiles and actually talked and laughed for like 30 minutes. Made a liar outta me! She actually said to me, " he seems fine." ;oP yup....

The big news is....he sucked. He actually made a seal and has sucked about 5 times today. He gags when he does it, but he did it. He wants to do it so bad, then gets frustrated when he gags...so we stop. Doesn't sound like much, but that is huge for him. :) baby steps....( I must constantly remind myself of that )

That night nurse that never came back that I was worried about is alive .... she just found another job ;)

Monday, June 15, 2009

:)

Been a busy last few days. I'll spare the details and let's just say we have water damage and half of the house's flooring now needs replacing. My poor husband just did the tile in one bedroom. eek!
Thank God for good friends coming to the rescue...I even saw John Gentges on his hands and knees drying my hallway! ;) Great friends....what a blessing.

Camden has done well the last few days. He was starting to tolerate the paci more and was even close to sucking. Now he hates it.....actually cries when I give it to him now.
He did find his finger today and kept it in there for a while. I was wondering why he wasn't gagging, and when we took a closer look we saw that he had it under his tongue. Stinker...


We are trying to get him used to things over the tongue.













we found a way to use the highchair. :)
He really enjoyed the view from it, and seemed to really like it. Here he is watching a baby Einstein video, because it is very important for a 4 mth old to know about lions....







Saturday, June 13, 2009

some thoughts....

It is the title of my blog, but I am blessed. Camden has been a blessing in my life. Although this has been the most painful time in my life, he is still the hugest blessing. I sometimes look at him and cry tears of joy, and as much as I try not to let myself go down that road, I think of how close I was to never having these days with him. I think of how I would have never known him and what I would be missing- the way his eyes squint to nothing when he giggles and how he gets that serious look on his face waiting to see what I will do next to entertain him. God is good, God is faithful. Even more so, I think of how I wouldn't have been able to pull through without His grace. We sometimes can't understand why certain things happen, and I don't begin to try, but I do know that we will get through and we will give God all the glory for being able to.

It is early and I am waiting for my Sat. nurse to come at 8am. Night nurse never showed, and no one has heard form her in a week. Weird. Hope she is okay.

Wednesday, June 10, 2009

and the airways are....

"lookin good!" :) Dr. M said after we see the pulm. next week they'll probably start windowing him off the vent and also lowering the settings. Im beyond thrilled! I told him Camden was ready to get the trach out today, but I guess it isn't that easy. ;p Come to think of it, I hope Dr M knows I was kidding...
I decided to go to the appointment with just the nurse this time and was missing Marcus' muscles for that battery and the vent..... but we did it. ;p To think maybe, just maybe, within a year we won't need that vent is just so exciting. I can't wait for the day Camden is not attached to something!!

Right before seeing the doc he pooped through his outfit again. This is 3/3 now...

Camden was great and let the dr do his thing. He also has swimmer's ear in one ear. I was concerned because he has been tugging at it and you can tell it is bothering him. Not sure why he has swimmers ear, since he hasn't been doing much swimming. He doesn't even take baths with much water, and he sleeps elevated, so hmmmm. But what a darling. He came home and took a long nap!

Tuesday, June 9, 2009

Happy boy!





that double chin gets in the way of trach care at times...;p

this kid LOVES Peanut too!



Good day today! Please pray for us tomorrow as we go to the ENT to see how our airways have grown and healed!! :)


































Monday, June 8, 2009

Long days :)

But all went well. We saw the nutritionist and GI. Camden continues to gain weight like a champ and is up to 14.7 from 13.10 last month. He is getting taller and thinned out a bit. She said that was fine because he had some to spare because he was "fluffy" at the last visit. I praise God he is gaining so well.

We are NOT increasing mls as of now but probably next visit, so that gives me another 8 weeks until I have to increase the pumping! I'll enjoy it while it lasts. ;0)
We are keeping him on the zantac. The nutritionist told me I could take him off the Reglan, but I told him I never gave it anyway and he was fine with that. I didn't think he needed it since I am realizing why he was retching etc. He understood completely and agreed. With Camden's acid reflux the zantac will be fine to protect his esophagus.

The transfer/ride went great and Camden was an angel except the normal pitching a fit while they weighed him. I would to if they stripped me and put me on a cold table. This was right after he pooped all down his leg ( which also happened at the last visit ) He worked himself up and was sweating, then as soon as I got him off of there he stopped.
I just knew I packed everything this time!! By the time we got to nemours I realized i had forgotten the the milk. I thought it was a good thing I brought my boobs with me, but I didnt have a chance to pump since his appointments were back to back, so we waited until we got home. I called Nichole ( home watching my kids ) and told her to warm some milk! ( like it was life or death ) It only put him an hour behind and he didn't seem to mind. He is so "hospital scheduled" and I don't know any other way with him, which those that know me know that I normally don't use babies and schedule in the same sentence!
I need to have a "going out" checklist for sure! Boy, this kid has really rocked my world....and I am enjoying every minute of it.

We have been wanting to get him an exersaucer. I think it will help work out his head and legs. His aunt Lizzy brought one to him last night. He loves it! Gotta get some pics of him in it tomorrow...

Sunday, June 7, 2009

Sweet sounds








One of the things I have missed is baby sounds. Since Camden's arrival I haven't heard him except for a faint cry hear and there since he was trached. Well he is talking and cooing around the trach now and it is loud and clear. Makes me cry tears of joy. He gets a very serious look on his face and starts telling you the stories. Love it!
I try to get it on video, but he wants the camera each time so this is as much as I could get..


This is him faking me out with the paci. ;) He'll bite on it and just be really still, then start laughing. Stinker! You can see him biting it in the picture...lol





He is also learning how to work me! ;) He was throwing a complete fit yesterday and when I picked him up he immediately stopped. He is officially spoiled....and I am fine with that. =) Even with his few spoiled moments he is still an awesome baby...and I think he deserves to be spoiled a bit. ;)

His brothers and sisters have been wonderful with him. This was today-my little babysitters while I cooked dinner...











Micah has been my little helper. She loves him and constantly checks his diaper and tells me, "I think he has poop." ;) She is pretty good with him although she is getting annoyed with him pulling her hair and pinching her face these last few days. He is really reaching and exploring!


Tomorrow we go see the GI and nutritionist so we will see how he has gained. His second outing! =)

Friday, June 5, 2009

Pop goes the g tube...

I didn't realize the balloon in the mic key button ( feeding tube ) was leaking so fast, so today when Camden hardly kicked at it during a feed it plopped right out. We put a new one in and called the dr office just to let them know, but everything is fine. The site has healed nicely, so he wasn't hurting. Micah was mesmerized by the whole thing. None of these tubes have phased her so I am thinking she may go into the medical field....go figure. ;)






We took Camden back to his room ( he was out in the living area ) and he immediately took a nap. I think he was stressed out ......











;0)




Micah changed a doo doo diaper yesterday. Not sure how she felt about that, but she is still saying she wants to have babies so it must have not been too bad for her!






All in all he has had a pretty good week. We are still working on the mouth and although he still hasn't sucked, I am thankful for the improvements I see daily. He has had some painful gas issues, but he gets through them. Wears him out with the crying and all, but he gets through it!!







Isn't he huge?? We tried the tub again and he was OK with it. Didn't love it.....but partly tolerated it. This time I put him in it while it was empty, then slowly added water. That worked a little better.




Those that do not know Josh...please pray for his health. He is our dear friends' son and is going through some major health issues right now. Please pray for drs to have wisdom and for the family to have strength.

We love you and are praying, Josh!!

Saturday, May 30, 2009

1 ML

.....is 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....