Pictures from This Evening

He was still going strong on our visit tonight. The nasal cannula is much better then the CPAP as you can see in the pictures below. He is much more comfortable with those tubes... We had a fantastic evening our boy is doing so well. We both still have to be cautious because there still is a chance that he can go back on the ventilator. We know another family whose daughter was born a week before Baker. She has been extubated and re-intubated a couple of times – so possibilities are out there. The good thing is while the tube is out his lungs are developing better. So our fingers are crossed that it stays out and he’s ready to breathe on his own.

Quick Update

We have to leave in 15 minutes but I had to get this update out. Baker had a big day today. They took him off of the breathing tube and it was so wonderful being able to see his full face for a few minutes. The then put him on a nasal CPAP . It looked scarier then the breathing tube and he did not like it at all. At 6:00 pm they switched him to a standard nasal canula, I haven't seen it yet so I can't explain what it looks like. I think it will be a little more comfortable then the other thing.

Baker also had his first eye exam today and we got good news from the eye doctor. He has no evidence of ROP which is great, and as far as he could see his eyes are fine. They are about 85% developed which is good for his age.

We just have to keep our fingers crossed that Baker is ready to be off the ventilator, so far he is winning this test.

Here are some pictures from last week...

Another good day…

Overall Baker had a good day. He got to put in a few hours of Kangaroo time with Mom this afternoon. The last time we held him was Wednesday I think, because he's been so unstable with his breathing support. He finally was well enough today to hang out with Mommy, and it was good. His aunt and cousin helped us clean out his room(at home) and get it ready for paint and remodeling J , which was such a relief for us. It's been so hard to make time to do anything extra, and she was such a help with organizing our stuff. Thank you sister!!!!

His super sweet cousin folded one of his baby blankets without prompting and brought it to me and said, "Uncle Scott! I folded Baker's blanket for when he gets out of the hospital." Every time we see her she does something extra special for Baker like offering half of her "Night Night" (blanket) for Baker when he gets out.

They may start his IV steroid treatment tomorrow if all goes well this morning. So I pray that this is what the little man needs to get the breathing tube out. Here are more pictures of some more of his preemie outfits. (he's almost outgrown them all, (I love saying that) but we should get at least one wear out of each outfit. Thank you all family members that sent clothes. He's gaining about an Ounce a day and he weighed 1630 grams (between 3lbs 9oz and 3lbs 10 oz) yesterday at midnight.

Week in Review

Wow! It's been a week since I last posted. Well it flew by, Baker had a very eventful week. O.k. the little man has been up and down with his breathing support. Bradycardia has slipped back into the picture and no one can explain it. This is a slowing of the heart usually under 80 beats per minute. He wasn't having these episodes at all for the longest time, or his heart rate sometimes would slow but not below 80 bpm. Yesterday he had a bunch of them, today not so much. His doctor couldn't explain why. One variable was his breathing tube, the nurse pulled it back a little and he didn't have many today.

They are still trying to figure out why his breathing is unstable. Some days he does great, some days he doesn't do so well. The doctor ordered a chest x-ray and found some stuff in his chest? I'll have to ask her tomorrow about that, sometimes it takes a day to mull over what his doctor said because she is very good at talking Neonatologist-Speak. She ordered a course of a diuretic Lasix to clear up any (possible) fluid in the lungs. (Pulmonary edema).

His Doctor also went over her plan to get Baker off of the Ventilator. She is going to soon give him an IV steroid and then pull the tube out and see how well he does. He will get a small series of these shots. He may or may not like it, if he doesn't then they will put the tube back. If he does then very cool another Milestone conquered.

He has crushed one more milestone this week, he has hit and surpassed the magic weight of 1500 grams. 1500 grams is when he's allowed to wear clothes, be swaddled and held, and is so much closer to holding his own body temperature. He has some micro preemie outfits and he's actually too big for most of them.. (see pictures below).

Baker will be 8 weeks old tomorrow morning, wow I can't believe it's been that long.

His eyes...

Bipolar Journey

Baker's breathing support was increased today. This morning they stopped providing breath support for Baker because his blood gas was great. This means the ventilator was still providing pressure to keep his lungs inflated, but Baker was doing all the breathing on his own. He was also getting very little oxygen (just above what you breathe in room air.) He's been rocking along since Tuesday evening, and finally got worn out from all the work of breathing on his own.

When we came in for his day time visit the ventilator was providing a few breaths, and I got really sad. His color didn't look right either. Baker started back sliding progressively throughout the day, needing more oxygen and more breath support. So now he's still not on as much support as he was getting Tuesday afternoon, but he's not getting his tube removed anytime soon. I wish I could describe the emotional journey… This morning when we got the news I couldn't be happier – I called all the Grand Parents to give them the news. I couldn't be happier; my boy was crushing this challenge. I was the proudest father on the planet.

Then the floor dropped from underneath my feet, and that old despair (oh yeah I remember you), came back for a brief moment. I talked to his nurse and she calmed me down. We then did his hands on, checked his temperature, changed the diaper(s) and he woke up and told me again that he was going to be just fine. His eyes (pictures to be posted tonight) are working together and he looked right at me and mom for a long time. I got to really look in his eyes and see the brightness that is my boy. All the despair washed away and again I'm bouncing off the walls happy. It is remarkable the progress that he's made. He breathed mostly on his own for almost 4 days straight and even though he was working harder he still gained weight (sometimes preemies will lose weight because they are working so hard to breathe). So even though he went back a little bit, we are still at a net gain.

Amazing

Well once again Dr. Power Wean was back in and we walked in on another drastic reduction on Baker's ventilator settings. And once again Baker amazed his parents. He may lose the breathing tube here by Sunday if he keeps it up. We are so proud of our little man, he is doing so great. He now weighs 3 lbs 2 oz.

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…

1 Month 1 Week

Baker did really well today. They gradually lowered his ventilator settings all day, and he tolerated it fine. Here are more pictures to tell the story of our visit. Oh yeah and thanks to Baker's wonderful nurse we got our first family portrait!!!