Less than a week....

and Camden should be home. Tuesday is the official discharge date...please pray all goes well and this is final. Marcus and I will room in Friday and Saturday night and then get everything in order for next week. It feels like a dream! I am still so amazed at what God has done in our lives. Camden is so amazing and what a little trooper! God is amazing....
They cut back on his day feeds from 125 mls to 106 mls, so maybe that will help a bit with the gagging. I didn't get to spend too much time with him today, so I really didn't get to check it out. He did get a bath and when I went back tonight we changed his trach ties so he was all fresh for bed. ;) He does have a nasty diaper rash that just popped up out of no where and he cries when he is changed. ;( G- tube site looks better, but it was squirting a lot yesterday. I don't think it was as bad today. Not sure what that was about.
It was hard to leave tonight because he was full of smiles, but I had to get the kids home. It helped knowing that he'll be home soon.

Yes, I am up late....was looking for two rottweilers at midnight, and they are yet to be found! :(

Homecoming.... take 2 ;p

I was able to spend a lot of time with Camden today while my aunt and nanny were hanging with the kids. Marcus and I had more vent training and I am starting to feel more at ease with that machine. ;) Camden had a pretty good day today. I am just keeping up with his feedings and was actually short a few mls to get him through the morning feed. :( I have started to pump more so I'll catch back up with him! The latest news on him coming home is by the end of the week. We havent even roomed in yet, and they like to discharge on Tuesdays, so it may be looking more like next Tuesday...but we shall see. They havent given me a date yet. Things seem to be going better and I feel like Camden is ready to come home. I know I am now. It has been a long journey. He was sleeping peacefully in his boppy when I left tonight. He is addicted to the boppy.;p It is great because he needs to be elevated with his continuous feeds through the night. He does a lot of gagging if I try to lay him flat during a feed. He has been doing a lot more gagging anyways...I think he is getting too much to eat, so I need to look into that more.
So the plan is Marcus and I rooming in this weekend if the room is available and to try to head towards home.

The best news today: the ent scoped Camden this afternoon and said that his airways looked much better! Last time he scoped ( a few weeks ago ) he said it was 50 percent better, so this was more great news. Camden is heading in the right direction. God has answered so many prayers. A few people have had concerns about some of my posts, but let me just say that I am fine. :0) I have bad moments. Sometimes I need to let things out on here, or I may not feel social, or I may want to hide on the back row of church, but I will slowly get back into the norm. I am not sure why things happen, and sometimes it aches really, really bad, but He is in control and I have to go along for the ride. I will make it, have made it, and have learned so much through this.....and, I am fine.... ;)

I will end with my other kiddos. Many ask how they are and I never talk about them on here. They are doing ok. There is a definite difference in them, but they are coping well. Micah is a bit emotional lately with lots of baby talk and crying when I leave. I know it has been long for her and she feeds off my emotions too. Im sure it is more difficult for her since she still hasnt "met" him yet. Another reason I can't wait to have him home.
I am so sleepy and am rattling on so that is all for now! :)

Day 94

Camden's cheeks have to get sore from laughing and smiling so much! He is so funny. We had a great visit today. His g-tube is looking a bit icky so we are keeping an eye on that. The balloon that holds it inside his stomach had leaked water, therefore causing the feeding "button" to become loose. Stomach acids were slowly leaking out causing irritation around the site. Ew, I know, but it is what it is. I have to head back to the hospital later because I am just keeping up with his feeds...little piglet. He is doing so well working those arms and kicking his legs. The ENT is going to check him again Monday to see how things look in his trachea. I am praying for more healing. :)
Marcus and I still need to schedule a date to room in at the hospital since we didn't do it this weekend. Slowly but surely getting ready for our baby to come home...and he improves everyday.

:)

I am almost 12 pounds! Good day today....
....mommy's tired and is going to just post a picture. This is from tonight :)





Thank you Lord for this sweet little miracle....

Change of plans ;)

But we know Camden does things his own way. :) He is not coming home Tuesday. Today Marcus and I met with some doctors and other staff members and they decided he is just not ready. He needs to be stable for 10-14 days with out vent changes etc before he is able to come home. I am glad because I didn't think he was ready either, but at the same time wanted him home so badly. It is so hard leaving him sometimes.....
So, they are thinking discharging in another 2-3 weeks depending on how he does. Well, at least we are prepared for his homecoming. ;) Now we wait....but it is what Camden needs.
He had a great day today without any episodes and I had a wonderful snuggle time with him tonight. He has a new nurse tonight who seems great so that always makes you sleep better. ;)

Car seats and discharge date.....

I have been non stop doing and getting ready and not in the blogging mood. Honestly I have also had a few weary days, but I am back. ;o) We are officially rooming in at the hospital from Thursday night to Sunday. This means Marcus and I will be sleeping in a room with Camden where we will do all his care alone. Yes, I am a bit nervous, but this is a step before going home. His discharge date is next Tuesday. One of the sweet transport ladies, Loretta asked me to bring in his car seat this weekend. I have seen so many people bring car seats to do car seat tests before bringing their babies home. It felt like we'd never get there. Camden is now doing his car seat test. I still can't believe he is doing so well after three months, and I am so thankful to God, but I am so nervous to have him home. I personally do not think he is quite ready, still having a few episodes at the hospital. I can't wait for my family to be together and for Micah to meet her baby brother, but I am so scared I am going to make a mistake. I will have home nursing care 24 hrs the first 4 weeks, then after that just nights. So I have 4 weeks to get comfortable by myself. There is just a lot of care involved with him, but I know in time it will get easier.

He is gaining weight fast! Up to 11.7 and he is starting to look it too! We bought him a neato jeep stroller yesterday. He has to have a double back to front one to carry all the equipment when we go anywhere. I will only be going to doc apps for a long

Update on the baby that may have needed ECMO....she did go on it, but she is already off, so she must be doing ok. I talked to the mom the day she went on, told her Camden's story, and told her I had asked for prayers for her baby. It was nice to meet her.

I was up with Camden for a few hours these evening. His primary nurses Kim and Elsa are on this weekend. All the nurses are great, but I just feel so comfortable during the weekends with them because they know him so well. I bathed him, changed his trach, (boy, does that get stinky!) put his feed on, and got him settled in for bed.

My Aunt Darlene and I have been working at the house getting things in order before he comes home. Mom still has the kids so we haven't had to worry about them. Lots to do and I am getting excited, but nervous. It is looking more like a week or two before he gets to come home. Marcus and I still have some classes to do and they like to discharge at the beginning of the week. So, all in God's time and as much as I want him home, I am not in a rush. =)

He only gained a few ounces the other night, but still gaining.

One of the RTs had some onsies made for Camden that say, " When in doubt, change it out" referring to trachs, lol...it was too sweet and he will be wearing them a lot. ;)

Vent training

Today was the first vent training and I am overwhelmed by it all. Tomorrow we will have some more training. Camden had a good day for the most part and he is getting used to the new vent. We are learning so much when we care for him while we are there. I feel like I am a bit overloaded with information but I know it'll all work out. Never a boring day for sure. ;)

ok, now for some details ;)

They brought in his home vent yesterday and it is a bit different from the vent he has been on. This is why they want him on in for a bit before coming home, so they can mess with it and get it to where he is comfortable on it. He may not have had enough humidity yesterday and that could have caused thicker secretions. He seemed more relaxed today, so maybe that was part of the problem. In the meantime, he scared off his new nurse that he had last night LOL ...... I don't think she felt comfortable coming back tonight, so he has another new nurse tonight. I talked with her on the phone and she says he is doing fine. Marcus and I came home tonight to rip out carpet. Trying to get things clean and in order before the little man comes home. ( I love saying that! )

Today we had the home medical equipment (monitor, suctioning, and oxygen) brought to us and we learned how to use them. Camden is not going to travel lightly. :) I may get back aches walking him around the house, but it is well worth it. ;p

When I walked in to the unit earlier I saw the ECMO machines out and my stomach just dropped. They were preparing for a baby who may need it. This would be the 2nd baby this year. Please pray that he/she won't need it and will be ok! I don't want any parent to have to go through watching their baby on ECMO, but thankfully it is there if need be....

They increased Camden's breast milk to 125 mls during the day. He has three day feeds, then continuous feeds through the night. He gets weighed again tomorrow. I can't wait to see how much he has gained.

He also extended his arms straight up while stretching today. Sounds silly, but it was so neat to us to see because from laying for so long, his arms are floppy and he isn't as coordinated as he should be for his age. Of course he needs a lot of therapy, but it was still so exciting to see him start to do things on his own & watching his little muscles working. He is such a cutie.....

Roller coaster

Not only has Camden's life been a roller coaster, but so have our emotions. Tonight I am so emotional and not even wanting to get into details in fear that this post will turn into a rambling pity party. Today his trach plugged twice ( mucus ) on me and one of those times was after I had put a fresh one in. It is so heart wrenching to watch him gasp for air and suctioning not work. I am glad it happened at the hospital for my first time instead of at home. I also think the reality of him coming home is setting in, and I am finding myself constantly praying against fear. ( praying against fear for something I want more than anything :s ) But I know we can do this....and I keep trying to count my blessings in all this. I have to keep reminding myself of all the miracles, and how God has held us up through this. It is the only thing that gets me through the days.

On that note--have I told you what an excellent husband I have? He has always worked so hard and is even working harder to get things prepared for Camden's homecoming. I am so blessed to have him. What a wonderful father my kiddos have!

Camden moved three bed spaces up right next to the window. Now Micah can peek in and take a closer look. I haven't told her yet...she will be so surprised. =)

Camden's first Easter

Nana got him this cute outfit with a darling bib that says "the Lord is my shepherd " He was so over the picture taking! He sacked out soon after we dressed him and took some pictures, so we got on the road to see the other kids......

Tonight when we got back we bathed him and Marcus finished his last trach changing that was needed to be done before discharge date. We did his night care, snuggled a bit, then hooked his feeding on and put him to bed. He was a sleepy boy!

He also hit 11 pounds today!

Dum Dums

Peanut came home from the hospital in this hat. Camden gets too hot to wear hats, but I had to get a picture with it. =)

Nana took the kids so Marcus and I can get to the hospital together and do our 4 days of training next week. Tonight Marcus changed the trach, and we worked together to learn some team work. ;) I didn't nag him one bit. ( ok, not true, but I was a bit nervous watching him do it ) We did very well together. We have a busy week ahead. There are also some things around the house to do as we are getting closer and closer to taking our baby home!

He doesn't like most of the dum dum flavors, but loves butterscotch! They give him these to let him experiance pleasant things around the mouth. He went to town on this lollipop tonight!

This is one of his primary nurses, Kim. We love her!!

Camden loves his daddy! Marcus acts like a goof and Camden just can't stop smiling. He loves interaction and loud people, lol. Good thing, coming home to this house. :)

He is off sodium now....and doing well off meds so far! Amazing! We are still waiting on the kidney results.

He made a seal on a paci last night and did 4 sucks in a row then 5. That is a big deal for him. I think the clipping of the tongue helped a bit too. Now he just has to get over some of the oral aversion. In time...

The kids were a upset that we weren't going to be with them tomorrow, so we are going to go to the hospital, put Camden in his Easter outfit, take pics for Micah, then drive 1.5 hrs to meet the kids for lunch! LOL We will then head back to spend the rest of Easter with Camden. =)

Happy Resurrection Day! Jesus Lives........

Day 76 and 77 =)

Camden is 77 days old today. :) A lot going on these passed 2 days. Nana came in town and got to hold him for her first time. She waited patiently for 76 days! :) Of course he just loves her and smiled the whole time he was awake.

They have decided not to try him off the vent until after he comes home. He needs time to grow and needs time for the bronchiomalasia ( narrowed airways & reason why trached ) to mature. He did so good the first few days, but just got too tired. They will slowly try him later in the office when I bring him to appointments after he is discharged. They are bringing in the home vent and Marcus and I will learn how to use it next week. We both have changed out the trach once and will have to do it two more times before discharge. Once we get through the vent, gtube, trach training, and feel comfortable they will give us a discharge date. Wow....feels so strange to say that!! I am so overwhelmed with JOY!

He is such a happy and tolerant baby! He never cried when I changed his trach. He got two shots ( after a little ordeal with me trying to get them administered in the time frame and order I want them, but we worked it out! ) and he just pooched his lip out then smiled. Then he got his tongue clipped. Poor thing has been through it today but he never cried all afternoon. He is ready to come home, and I am more than ready. Especially with him doing so well under the circumstances, and knowing I can do all his care at home.

They took him off all the blood pressure related meds to see how he does. Basically right now he is just on amoxicillin and sodium. And once again, wow...I can't believe I am not typing out the long list of drugs he was on before. Thank you, Lord!

Tomorrow they are checking his kidneys. There were some concerns on the ultrasound, but it isn't a definite, so please keep that in prayer.

A lot accomplished today!

Resting :)

They are passing on the collar today all together. He needs a break and just couldn't keep his stats up, but that is ok...Camden is always doing things his way! ;) Maybe they'll try again in a day or two. Looking more like he'll be coming home on a vent which I am totally ok with. He had a good day for the most part.
Another roomie of his got to go home today. I told him he needs to be nicer and quit running them off. ( I mean he is trached and can't make noises...you'd think they wouldn't be so picking! ;p) It is so awesome to see babies go home. The nurses wheel them out in little red wagons...too funny. Camden can't wait to get a wagon ride one day! ;) Soon, buddy!!
Thank you Lord for giving me the privilege to have and care for this child of Yours.....

Double digits!! :)

In weight. :) Camden has finally gained! He hit 10 lb 5 oz last night. Hasn't gained much in his little 11 weeks of life, but he is gaining, so that is awesome.

He was so hot today, so the clothes came off. You are either freezing or sweating in that part of the unit.

Blood pressure was good again today. PTLord!

Had a fit while on the oxygen collar, so they had to put him back on the vent 30 minutes earlier than what they wanted. He went back on tonight around 8pm. Praying he does better this time. :)

I love these precious little toes. They have always teased him at the hospital about them being monkey toes. I told them he fits right in with all our monkey toed kids!

This is Peanut's favorite picture. We took it while he got to hang out with Camden this evening. He didn't want to leave since he knows he can only visit once a week, so he stayed long and made the best of it. :)

Cootie free....

here is Camden today hanging in his bouncy. This is the vent attachment. I am feeling a cold coming on, so I was nervous to stay around. I am sending daddy up there in a bit to learn trach care. :)

Still doing great with time off the vent. He will go for three hours again tonight.

No more IV in the head ( as of yesterday ) the antibiotic is finished for the ORSA, and the other antibiotic can be giving through g tube.

Praise God he didn't need Viagra today!! He is now only getting it when his blood pressure is too high.

this is him sporting the oxygen collar. So much nicer....just kind of hangs there and you don't have to be as careful with him. We will be loving it if he can go home on this!

?

Trust in the LORD with all your heart and lean not on your own understanding....

Proverbs 3:5




Camden doing well with oxygen collar. His stats were a bit low for a few minutes after the RT put it on, then they went back up. This evening I watched his trach get changed and the site get cleaned. I learned a lot and watching her answered some questions I had. Camden's primary night nurse, Kim, is on every weekend and has been great with teaching me and answering all my questions too. I am feeling more confident. She quickly bathed him ( he gets stinky, and the trach site does NOT help the situation! ) and then we had lots of snuggle time.

He is back up to 9 lb 15 oz.....highest he has ever been and the weight he was before the trach surgery. They are only weighing twice a week now, so we will see if he gained on Sunday. :)

Another late night

....but I just don't want to leave him. I put him down, then want to pick him up again. ;p

He is still having time on just the oxygen collar, and doing well. 2 hrs earlier today, then 2 hours tonight he was on it. Tomorrow they'll start 3 hr windows. He stats great and seems to do better without the vent (in my opinion) which is amazing. He is amazing. :)

I tried to introduce the breast to him last night and tonight and he was clueless. Stared at me and smiled. It was the strangest feeling having one of my babies next to me not acting like he was starving to death to get on! But how would he know what to do? And he isn't hungry! ;) In time... Surprisingly, I am okay. And I say that because I really thought I was going to have a meltdown about the whole not being able to breastfeed issue. But I feel so blessed to have Camden, that he is getting stronger, and that he is even able to eat - even if it is through a
g tube. Those things are so huge, God is in control....and I do believe he will breastfeed and figure the whole "food is supposed to go in your mouth" thing one day. =)

One of the risks of being on ECMO is hearing loss. Even while on ECMO we would see him flinch when people made loud noises. He would also respond to our voices, so we knew he could hear something. Well, he passed his hearing test....another HUGE blessing!

Trial run without the vent

went well! Camden was off the vent for an hour today, just on a humidifier and he did it!! ( i missed it but they said everything was okay ) Tomorrow they will do more and see. I can't believe he went "vent less" for that long. Thank you God!

I finally got up there this evening and I had to bathe him and change trach ties. Of course he through a fit but he was okay. They make me do everything now when I am there so I get all the practice I can. He now is up to 9 lbs 12 oz. Sloooowly gaining, but gaining.

So while we were there tonight, Micah got the surprise of her little life. The nurse took him off the vent and brought him to the window so she could see him! She is a real easy going nurse and didn't mind when I asked her to do it. I almost cried when I heard Micah's little mouse voice say, " Awwwwww!! " =) and I am still in shock that my baby was able to be off the vent long enough to do go to that window. Thank you Jesus....

His trach site is not looking the best. Just not healing that great. Camden does so well with it as painful as it looks. I am praying it heals up soon!