Daddy needs to breathe…

Well, maybe I should have a little more faith in our little fighter… He is tolerating the new vent settings like a champ. He is so much closer now to getting the breathing tube removed.

High five to Dr. Power Wean.

Ventilator Part II

I went back this evening and found Baker's rates lower yet again. He seemed to tolerate it o.k., but the little guy is working really hard to breathe. When they do this, he burns a lot more calories then normal. I'm sure he's going to lose some weight tonight. I just don't get it, his regular Doctor assured us that we would take a conservative approach to his ventilator weaning and the shift she's not there and this particular doctor is all that talk goes out the door. I'm going to talk to his regular doctor tomorrow to see if we can get this in his chart, I'm also going to raise hell. There is no point in these drastic changes if it's going to push back his progress like it did last week. I just pray Baker doesn't crash this morning. I'm going to call in a couple of hours to see how he's doing. I have to qualify all of this by saying I know very little about what I'm talking about here, I just know how Baker has done in the past when this doctor has taken care of him. The little guy may surprise the heck out of us and decide to breathe on his own quicker then we thought, but then again he may not be quite ready crash and progress be set back a couple of days. Fingers are crossed.

Happy Tuesdays

Baker is doing great! As I've noted previously Tuesdays are usually not the best days for us. We get the cranial ultrasounds on Tuesday, which tell us the progress of the IVH (or brain bleed)… Well today's update was absolutely unexpected and wonderful. He had such good progress from the last one as far as the bleeds subsiding that they don't need to do the ultrasounds anymore. This doesn't mean that we are completely out of the woods. On the left side of his brain he was still showing signs of beginning stage PVL. These are the scary cysts that develop when babies have these types of bleeds. These cysts can be the cause of developmental problems and worst case cerebral palsy. We will find out the extent of the PVL when he gets an MRI a few weeks from today.

So Dr. Power Wean is on tonight. I'm not sure if I posted a lot about him, and I'm sure he's a great doctor – but every time he's taking over (when Baker's doctor is out of town or not on her shift) he makes dramatic changes to Baker's ventilator settings. We came in today and his pressures were decreased a little and his breaths per minute were decreased by 30%. This makes Baker work harder to breathe. Now with all that said Baker was doing awesome this evening he was on room air when we came in and breathing well on his own. He is working harder to breathe, but so far so good. I just hope he keeps it up, because last time he went down really far really fast he didn't do well and it took him many days to recover. Back to the old two steps forward three steps back which our Doctor told us was not her plan for him.

I'm going back to watch Baker some more to make sure he tolerates his new settings, and be there to tell the nurse if he isn't acting normal. I'm going to post pictures once I get back.

Baker is doing well.

Hey everyone. I apologize for not posting recently. We've been very busy and also trying to get some rest in between the hospital, work and life. Baker is doing well. They started steroid breathing treatments for his lungs, to help his lungs develop and hopefully get him off of the ventilator soon. He's been tolerating his feeds excellently and is gaining weight pretty consistently. He's very expressive and makes really cute faces. We are holding him as much as we can and he loves the time he spends on mom and dad's chest. I'm going to bring the camera in tonight so I can get some recent pictures of him while mom holds him. That's all I have right now. I'll post some pictures tonight after our visit. I know I say this a lot, but I can't express it enough; thank you all for your posts, prayers, happy thoughts, well wishes and support.

The Nurse Cam

Click here to see pictures taken of Baker by his nurses. We left a disposable camera with Baker's stuff so pictures could be taken when we weren't there or forgot the digital camera.

Hey everybody!!!

The last couple of days Baker has slowed down on his ventilator weaning. They have him up on more support; he's not quite ready to breathe on his own yet. This is a minor set back, and very common with premature babies his age and size. Overall he's doing well with the breathing, but as I said earlier he gets too comfortable and let's the ventilator take over his breathing for him. He is scheduled to have the PICC line removed because he doesn't really need it anymore. All of his medications can be administered orally. For all that have joined us late, the PICC line is was a central catheter going from his foot to above his heart that was used to administer IV medications. Once this is out then he will have no more needles sticking in him.

They are changing his feedings now. He is moving from continuous feeds to bolus feeds. This means he will be getting his 30 mls within a 15-30 minute period instead of over a 3 hour period. This is closer to natural feeding, but sometimes isn't tolerated as well as continuous feeding.

We also got the results back from his Monday cranial ultrasound. He is now showing the beginning signs of PVL which was expected with the Intraventricular Hemorrhaging. This is still a wait and see thing.

Breathing…

This weekend has been all about breathing. We know a family at the same NICU who had a baby admitted one week prior to Baker. She was a little bit older then him when she was born, but was on a ventilator like Baker is now. They have been going through a roller coaster ride with trying to wean their baby off of the vent. From my limited perspective this is what happens. The RT gets a blood gas which tells the Doctor how well Baker is absorbing oxygen and expelling CO2. If everything looks good they lower the rates that the ventilator is supporting Baker. (I'm oversimplifying) After the rates are lowered Baker has to work a little harder because if he forgets to breathe then the Ventilator is going to deliver less breaths then before which can lower the amount of O2 that is carried in his blood and raise the amount of CO2 in the blood. (Whew! Please stay with me) Baker has been forgetting to breathe every once in awhile. It looks like to his mom and I that when he goes into a deep sleep he forgets to breathe. When he is active, awake he breathes way over the support of the ventilator. When he is still, asleep he lets the vent take over and breathe for him. We had a scare on Sunday because he decided to do this when he was on a very low rate (for him). He was not receiving enough breaths for him to get any use from breathing and his oxygen dropped really low twice. He scared the heck out of Mom and Dad.

They adjusted everything back up to provide more support and he's been pretty good since. Of course our goal is to ultimately get him off of the breathing assistance as soon as possible. The longer he is on the ventilator the greater his odds in having lung problems. But why not conservatively wean him little by little even when he has an excellent blood gas. It just seems the process is long and hard with many ups and downs and isn't as exact as you would want. This is one of the big milestones that will be overcome by little Baker and he will conquer this on his schedule; he just has to remember to breathe…