Friday, July 24

Bryce is Breathing!

Sorry for the delayed report but I wanted to get a good idea of how Bryce was going to do before trying to spread the word. And so far, Bryce is doing amazingly well!

They extubated him at 12:40 p.m. and he had a blood gas test at 2:40 p.m. that confirmed what we thought we could see - Bryce is doing great. His C02 level was a little high but still within the acceptable range. They think that the C02 is just not being blown off as well because he is breathing on his own, hence smaller, shallower inhales and exhales.

Amazingly Bryce didn't even get that fussy when they took the tube out, maybe because he was so ready for that thing to be out of him, and he never really desatted afterward either. He's been taking little breaths all on his own for almost four hours now and is on a little more oxygen (35%) but high-satting most of the time.

We're still waiting for an xray at 4:40 p.m. to check how well his lungs are expanding but anticipating that they must be okay since everything else looks so good.

We are so excited but so scared to leave yet since we know first hand how quickly things can change around here!

The plan all week had been to go home tonight for our second once weekly visit but I simply can't promise that at this point. We'll see how things go.

Thank you all a million times over again for all your thoughts, prayers and comments - they are working wonders!

These pictures are of his new CPAP (continuous positive airway pressure) set up. It includes a nasal canula that blows a constant pressure of air (with a set % of oxygen) into his nasal passageway. This allows Bryce to not have to work too hard to pull in a full breath of air all the way to his lungs from the air around him. It basically lessens the distance he needs to inhale the air. Additionally, it is currently set to give him 20 "puffs" per minute, to stimulate breaths if he forgets. He is currently breathing 63 breaths per minute though, which means he's doing a great job all by himself!

Isn't he adorable?!

Thursday, July 23

Excited Yet Equally Terrified

I just received some very exciting news from our NP today - the plan for tomorrow morning is to extubate Bryce. Yes, that's right - extubate. And not by mistake, not just for a second but as in let baby Bryce try his hand at breathing without a ventilator.

This step to CPAP is commonly the same dance back and forth as from the oscillatory to conventional ventilator. He may go to CPAP tomorrow and be back on the vent tomorrow night or he might last a week and then have a set back. He may go several weeks but then need the vent for another shunt surgery and have to be weaned off it again.

Hence, we are so excited to see baby Bryce without a tube down his throat but equally terrified that something could go wrong or that it won't last long.

More good news to report too. Bryce is finally getting some more mommy milk today. They are using my colostrum from back on 6/12 to "prime" his gut and see how he responds to the feedings. I hope and pray that he doesn't ever have to truly experience NEC as I'm so exhausted by hearing how horrible it is.

Last but not least, Dr. George himself, Bryce's nuerosurgeon, came by to check on him. He said he looks good and hopes this shunt will last several weeks until we have to make a decicion about what he needs - "or whether he needs anything at all." That's about as good of a rosy outlook as you can ever expect to get from a brain surgeon!

All in all, Bryce continues to amaze us with how proud we are of him. It's funny - most parents want Ivy Leaguers, Doctors or Olympians to be proud of. We just want him to breath well on his own, to look up at us and smile, to giggle a little baby belly laugh when we take him home to meet his four legged siblings.

Wednesday, July 22

Post Op

So far so good. Bryce is still a little out of it from surgery this morning but it's like he's a different baby than the one who had this same surgery three weeks ago. He's still on low vent settings and oxygen at 24%, he's maintaining his blood pressure all by himself and his heart rate tells me he's not in pain. He's back on his tummy and peacefully sleeping.

I can't believe what a trooper he's been today. I have renewed faith once again as to what a fighter he is. And that he'll continue to surprise us all by how well he can bounce back.

They're giving him a transfusion right now to help keep his blood pressure up (and since they are always taking but rarely giving) and holding feeds for today. But maybe tomorrow he can get some more mommy milk. Hopefully he will and hopefully he'll be able to pass it more efficiently now that he's moving things all the way through all on his own.

Thanks to everyone for your thoughts, prayers and support - we felt them helping us all three to be brave in the wee hours of this morning and I know the doctors all felt them helping them to be precise and confident in their work. Thanks y'all, we love ya!

Tuesday, July 21

Back to Surgery

Well Bryce is scheduled to go back to surgery early tomorrow morning to have the shunt in his head either replaced or a new one put in. They won't know exactly what they'll do until they see what everything looks like.

The follow up ultrasound that neurology does every week showed on Monday that Bryce's ventricles were slightly more swollen than last week. This is not an emergent issue but since he is doing so well otherwise and before it becomes an issue for him they want to go in and take care of it.

We're obviously not thrilled at the idea of our baby going back downstairs for surgery but at least we've been through this once already and know what to expect. Also, we have the tremendous peace of mind that comes with how much healthier Bryce is now than he was three weeks ago. It's really hard sometimes to either believe he was that sick just a couple of weeks ago or to believe that he is doing this well today. I thank God many times a day for how well he is doing right now.

Both Caleb and I feel good about the surgery but I think we're both concerned, for good reason, about the recovery. We've been warned that he's likely to need more support post operatively but you never know what that really means until they see what he is going to do.

Since we don't know how he will be afterward, and because we love it, we've been trying to get as much skin to skin time as possible. I was able to hold Bryce yesterday, though only for an hour because he had a dirty diaper (even though it was changed not once, but twice immediately preceeding the hand over).

Caleb is holding him now and they're already past my hour from yesterday. All cozy and comfy, they might be there all night long.

We also took advantage of Bryce's health to give him a good rub down last night. I even got to shampoo his hair with some Johnson's and Johnson's for the first time. I admit he didn't care for it one bit - but what baby does? He turned all red in the face and threw all four limbs around in defiance but came out with silky, golden locks and no more cheese under his chin!

If I don't get a post up tomorrow, post surgery, to update the blog check the Baby Bryce Tweets on the right side. Due to Caleb and I jointly breaking my phone I haven't been able to text the blog in a week but I can still Twitter.

And of course, please keep us, and especially baby Bryce, in your thoughts and prayers tomorrow morning as Dr. George works his magic on our tiny baby's tiny brain.

Monday, July 20

Hungry Baby

Poor baby Bryce - the docs decided at rounds this morning to hold off feeds for another day. His belly still looks pretty good but there are a few dilated bowel sections in his xray that they are mildly concerned with.

With NEC it's always better safe than sorry.

Otherwise Bryce is still doing stellar! His oxygen is currently set at 26% and he's high satting (saturating his blood with oxygen above 95%). His ventilator is set to give him a rate of 30 breaths per minute but he's averaging about 40-50. Those extra ten to twenty are all Bryce!

And by the way - try to take 40 or 50 breaths in a minute...go ahead I'll wait...

You can't do it. Okay, at least I can't do it. Just goes to show you how tiny his little lungs are that they can fill and empty completely in less than 2 seconds!

And he's put on at least a pounds since we've gotten here.

Well, I've gotta get ready for our afternoon holding session. Poor Caleb is at work so he's giving up his turn to hold but I have to admit that I'm a little glad. I'd hold Bryce all day every day if they'd let me.

Sunday, July 19

Our Rockstar

Bryce has had such a wonderful weekend we are now officially referring to him as our little rockstar!

He's 30 weeks now and we've been here six weeks. We've had some good times, some bad times, some okay, in between kinda times but these times are great times.

We're so proud of how much he is growing and how strong he's proving to be.

We even went home on Friday night and slept in our own bed! Oh how wonderful that would have been had Dr. Hodges not called at 11:30 p.m. to say that they were concerned Bryce might have NEC. NEC is necrotizing endercolitis and is a very dangerous infection of the intestines. Fortunately though, Bryce plowed through the night with no more signs of infection and although he probably won't get to eat again until tomorrow he's still doing well.

We're not sure, and probably never will be, if he actually had NEC and they just caught it super early or if they were being overly cautious. Either way - we're just glad he seems to be healthy right now.

On top of all of that and without the help of a glycerine suppository for the first time Bryce pooped all on his own accord. We never thought we'd be so happy to see poop! Caleb has even become accustomed to digging poopy diapers out of the trash for inspection if the nurse throws them away before he gets to check them out. I never would have expected that one.

This is great because it means his little tummy is working and hopefully when he gets some more food (hopefully tomorrow) he'll be able to push it all the way through. My poor little pumpkin, I think now that he has really gotten to feel food in his tummy he must be terribly hungry - having not eaten since Friday night. I can't even imagine not eating for two days.

Maybe tomorrow they'll give him some of the milk I pumped today after the ice cream social the March of Dimes volunteers put on for the NICU families this afternoon. I'm sure he'd appreciate Blue Bell vanilla ice cream flavored mommy milk for his first meal trying food again.

As a side note, I'm not sure what is going on with our comments section but I'm working on it. In the meantime, please be persistent as we count on your comments and kind words for our morale! If you will press submit again after the message tells you that it won't work you will get the funny letters box and it will work that time. This is just a temporary measure and I apologize for the inconvenience. Thanks, ya'll!