Wednesday, December 30

The Daily BAM Report

Ever wonder what Bryce is doing?

Oddly enough, sometimes I do.

Let me clarify. I ALWAYS know exactly what Bryce is doing at that specific moment in time. But if you asked me when he sleeps and when he eats? My "mommy brain" would mutter something about educated guesses.

But this information is really quite important, at least for any self respecting type A personality. But really, even types Aish's like myself feel compelled to seek out the trends, the specifics on intakes and outputs, the best-time-to-plan-a-shower times, especially the shower times.

And so in a state of shear helplessness I began making a log of everything I could write on a notepad that went everywhere with me. Everything. Everywhere. Exausting.

And then it occurred to me - a spreadsheet! Yes, why didn't I think of that days ago when I began this endeavor? Blame it on the mommy brain. It's my go to for everything these days anyway. I mean seriously, there's a whole other post on mommy brain. Another day.

Anyway, today, after my spreadsheet epiphany, I found myself googling for templates to get what I needed in a jiffy. And then I stumbled upon my new obsession. The Daily BAM report.

As in The Daily Bryce Alexander Moline report. As in an online application that takes my silly little log in a notepad and sprinkles it with some magic fairy dust. It's like the pinnacle of the pinnacle of baby tracking. And as anyone who has ever had a baby knows (or at least I prefer to imagine that every one of you out there agrees with me) nothing could be more valuable.

Seriously though. Bryce isn't growing fast enough; because he's not eating enough. And I know, as a preemie mom knows, that he needs to have 24 ounces of his 22 calorie formula in every 24 hours in order to even have a shot at the "catch up growth" his doctors are all stammering on about.

But in my no sleep longer than 4 hours marathon I can't always recall exactly how much of that bottle he took at 2:15 a.m. - his favorite meal time. Let alone, what time of the day he is most likely to eat well, or be sleeping, or smiling, or gassy...and sometimes if I remembered to give him his multivitamin. How about the two doses of this and one dose of that.

An apparently brilliant and otherwise like minded stay at home dad developed Trixie Tracker a few years ago for this very purpose. I discovered it today and fell madly, deeply in love with it.

And the best part is - I can share it with you all!!!! GO here, to the Daily BAM Report, at anytime of the day or night to see if Bryce is awake or asleep, eating or not, when the last time he pooped was, how much he weighs or if he's had his medicine for the day. You can even see that although Bryce is 6 months, 23 days old today his corrected age is a mere 3 months, 4 days.

I could go on and on about my new best friend but Bryce will be up to eat again in only two hours so I have to say adios for today. Thanks for checking in with us!

P/S for Bristelle: Please tell baby Kolby's family that I would be honored to hear from them. Some of the best resources I had during our hospital stay with Bryce, and even since, have been other micro preemie moms. Ladies who once were strangers are now the first person I think of when Bryce is going through something. Because I know that they know like very few do. Baby Kolby and family will be in my prayers. Much love.

Saturday, December 26

Merry Christmas

Bryce decided his Christmas gift to us would be abundant smiles! We are so excited to see him smiling more and more everyday, especially after that first smile wasn't repeated for almost a week! We were wondering if it was some sort of fluke.

Well, I've got proof this smile is no fluke and pure genuine. It's truly the best Christmas gift we could ever have asked for. Of course, we were entirely too shocked by months of the crazy unknown to think of asking for such a thing.

I'm so sorry that I haven't kept up with the blog better since we've been home. We were talking today and realized we've been home for six weeks now - how is that possible? But my New Year's resolution is to post more often. Writing this blog and reading your comments is without a doubt what has gotten me through the most trying time of my life. I need to respect that process. Plus I miss you guys!!

I hope everyone out there had a most wonderful Christmas. Just being home with Bryce has been the best Christmas ever and makes me wonder how much better they'll be every year as baby Bryce grows into our little boy and discovers the wonder of Christmas for himself. I can't wait to make that as special as possible for him. Children are after all the best part of Christmas.

Here's a parting Christmas gift from our family to yours...

Wednesday, December 23

Getting there...

A step in the right direction - no more oxygen during the day anymore! Yeah Bryce!

Follow up again in one month.

Grow baby grow - doctor's orders!
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Tuesday, December 22

Big Day Tomorrow

Friday night Bryce did an overnight pulse ox test to see how well he saturated his blood with oxygen on the 1/8th of a liter he is currently on as well as on no extra oxygen. It's hard to be sure how he did since it was overnight but every time I looked he seemed to be satting the same regardless of whether or not he was on the oxygen.

Well tomorrow we find out if he did well enough to come off of the oxygen. We sure do hope that he did. It feels like we're on a leash with him all of the time and the concentrator is very loud. We are careful not to complain too much because we realize how blessed we are to have brought such a healthy and happy baby home with us, especially considering his entrance into the world. But we can't help but hope to be rid of the minute oxygen he's on and have a free roaming baby!

Also tomorrow we begin physical therapy. Because Bryce's brain bleeds and need for steroids in the past make him more likely to develop Cerebral Palsy it is best for him to begin physical therapy as soon as possible. And so we shall, tomorrow.

I'm very excited to see if a professional will have any better luck at tummy time than I have had. We'll see.

I'll be sure to let you all know as soon as I do tomorrow so keep a look out and thanks for continuing to check in on us!

Much love!

Sunday, December 20

Good morning, Mommy

Here's Bryce wearing his camo deer slippers this morning - and as you can see also seriously pondering the meaning of life. Gotta love him!
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Tuesday, December 8

Six Month Well Visit

Bryce had his six month well visit with the pediatrician yesterday morning and got a clean bill of health. Of course, he's really only at the development level of a two month old since he was four months early, but he had to have his six month shots regardless. Needless to say, that has not been fun. He's been pretty grumpy ever since and needed a couple doses of Tylenol for the immunization induced fever. Otherwise though, Bryce is doing fantastic.

The neurosurgery follow up visit last week went well. The CT scan showed what I felt confident it would, that Bryce's shunt is working well and his little head is healthy as can be right now. We'll have to go back in six months for a fast acquisition MRI and if everything still looks good then we'll switch to the annual check up with them. Bryce will have to follow up with them annually for the rest of his life but as long as we only have to make that trip once a year we'll be happy!

Sleep has been quite the challenge as of late. Bryce still needs extra calories and nutrition for his preemie catch up growth but unfortunately the nutrient and calorie dense formula is harder for him to digest. This means that despite the prescription laxative he's on pooping is not a regular occurrence and is usually quite an ordeal for poor baby Bryce.

On a happier note, Bryce showed me the first sign of a genuine smile on Sunday morning. We were lounging in bed and I was singing to him and he cracked a big smile at his momma. Needless to say, my heart melted and my eyes welled up. The truth is that with everything Bryce has been through and all the things he is so high risk for (Cerebral Palsy, developmental delays) there was never a guarantee that he'd smile. But what mom doesn't wish for this for her children? Every time Bryce does something that other parents often take for granted that their children will do I am encouraged to have more and more hope for Bryce's future.

If he can make it through everything he has already and still find it in him to smile then who knows what else is in his future.

Wednesday, December 2

Back to Work

I've been working as much as possible pretty much since Bryce was born but today I left him home with his Daddy to go to work...all day. I was actually kind of excited. To be something other than a bottle getter and diaper changer.

But then this morning I walked over to say goodbye to Bryce and nearly changed my mind. I knew it was something I had to do sooner or later though. And I reminded myself that moms all over have to do this every single day. I'm so blessed to have the flexibility to be able to work and be a mom, sometimes at the exact same time. So I put on my big girl panties and walked out that door.

It was a long day and despite knowing that Bryce was home with the person who loves him second most in this world (not even his Daddy can love him as much as I do!) I worried incessantly. Caleb and Bryce skyped me at work around lunch time and you think that would make it easier but it only made it harder. Seeing that sweet face reacting to my voice made me miss him all that much more.

Eventually the day had passed and it was time to visit with Bryce's beautiful girlfriend before heading home. Seeing the ever-sweet Adelyn almost made missing my Bryce all day worth it!

Tomorrow is our big neurosurgery follow up visit. And Bryce's first MRI. The radiologist actually had the nerve to call me today to say that I can't feed Bryce for four hours before the appointment BUT should bring him in sleepy or sleeping in order to avoid sedation and to get it done as quickly as possible. Nothing like putting pressure on a mom to starve her baby for a few hours and then try to get him to sleep perfectly still in a tunnel surrounded by strangers. Come on, man.

Wish us luck and we'll let you know how it goes!

Monday, November 30

Bumbo

Bryce had his last visit with the Retina Specialist today following his ROP eye surgery. We are very happy to have that behind us! So happy we're hanging out on the couch together waiting for Daddy to come home.


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Monday, November 23

Moline Family Portraits


On Sunday we got all dressed up and headed out to Caleb's childhood friend's ranch for family portraits. If you don't know Dustin then you're missing out on one of the most talented photographers in the Austin area and quite possible beyond. Simply put, he's an artist.

These are just two samples of the amazing wonders he did for us.


If you're looking for a wedding, family or senior portrait photographer you should definitely consider checking out Dustin (www.dustinmeyer.com).

This is a precious time in our lives and I can already see how quickly it is passing us by. I am so grateful to have these pictures to remember it by.

Bryce says Hi

video

Friday, November 20

Big Yawn

Bryce doesn't do anything small, not even yawn...



Yawn captured by Miss Megan two nights ago. Notice how his cannula is nowhere near his nostrils...that's how he prefers to wear it.

Tuesday, November 17

Tummy Time in the Sun

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Off to the Doctor

Again!

Sorry we haven't posted but we've been busy with doctor visits, suppositories, medical equipment and the long nights - all the joys of motherhood!

More coming soon, there's so much I want to share.

XOXO
K
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Thursday, November 5

Home Sweet Home

Bryce won't sleep laying down by himself but he'll quite happily sleep sitting in his Bumbo...
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Tuesday, November 3

The time has finally arrived...

...for us to take baby Bryce home.

We've been a little out of touch since the baby shower last week trying to wrap up loose ends at home in preparation for Bryce's homecoming.

What a truly exhilarating and equally terrifying endeavor!

It's been a long time coming though I think we honestly never thought the day would actually arrive. This Saturday is Bryce's five month birthday! Boy, we've been in the Dell NICU for almost half of a year.

I personally have spent almost every day, almost every hour of every day there. And although I was there with Bryce I was also there with my new friends, mentors and confidants. Writing this and thinking of them brings tears to my eyes. I am going to miss the angels of Dell's NICU more than I can express.

These strangers who've come into my life so unexpectedly. Who knew me not from Eve but wrapped their arms around me in much needed but rarely requested hugs. Who've prayed with me when the most important thing in my life was hanging on by a mere thread. Who've laughed with me, oh how we've laughed, and even cried with me. Who've insisted on a break for me when I couldn't see myself how much I needed one. Who will ALWAYS be a part of me.

I never once imagined how hard leaving the NICU would be. But imagining a day without Lisa's companionship, without Danielle's silly stories, without Jennifer and Kathleen's wisdom and advice, without Shawna and Brandy's smart mouth comments, without the countless visits from Bryce's many wonderful caretakers* just to see how he's doing and offer a word of encouragement seems, well, just plain wrong.

I know we'll adjust and many of these ladies will continue to be a part of our lives but as tomorrow's discharge looms ever closer I can't help but feel it will be bittersweet. As we said goodbye to Jennifer yesterday afternoon and Lisa early this morning I had to choke back tears. Walking out tomorrow with Bryce in our hands is sure to be as emotionally taxing as the day we first walked into the NICU. So naive and ignorant as to what lie ahead.

I'll never forget that morning. How lost we were, trying to find our baby who seemed so impossible. Judi and Hoyt trailing quietly behind us as we navigated the elevator and hallways of Dell for the first time. We used that phone at the front, followed the instructions on the sign so carefully, as if we might mess them up and miss our boy. But Shawna came out and showed us how to scrub in, so matter of factly and yet so compassionately - so Shawna. We walked down that hallway too scared to speak, too afraid to ask questions.

I remember Mom, Poppa and Sharon were there waiting with Bryce. They were so quiet, we were all so frightened, almost scared a breath would take him away from us. And Kirby was there, methodically caring for our tiny miracle's every need. People were explaining things to us, offering us water or tissues and putting on a strong front but I knew what they were thinking. They were thinking the same thing we had been thinking all night but couldn't dare verbalize...there's just no way this baby is going to make it. And in the days and weeks that followed baby Bryce's life remained ever so tenuous, so fragile, so delicate. But our NICU staff, our friends and our family stood by us, ever so strong, so steadfast, so stubbornly unflinching.

And so here we are, many days, many tears and many new friends later. Anxiously and nervously preparing to walk out of the NICU for the first time without the intention that we'll be back in just a few hours. That we'll see our friends and familiar faces soon enough again. No more scrubbing in, no more sitting in the recliner holding the most precious and amazing thing that has ever happened to us, sharing every second of his existence with these amazing people.

As excited as I am for our future, I am equally terrified. As overjoyed as I am to finally bring our baby boy into our home, where he belongs, I'm equally saddened by the loneliness of an everyday routine that doesn't include our NICU friends.

We'll adjust and I'm confident we'll thrive. That's what we do. But we'll miss these friends, we'll think of them often and we'll forever be grateful for the miracles they perform in their jobs everyday.

*Diana, Lois, Lauren, Tiare, Melody, Thuy, Gary, Nicole, Shonda, Nicole T., Leah, T, Sam RT, Jaime, Jimmy, Lei, Dave, Kendra, Matt, Sara, Camille ... so many I can't name them all...so selflessly caring for our sweet baby boy.

Friday, October 30

MAS VIDEO!

Here's Bryce sitting up in his crib on his new Boppy watching his mobile. I wish I had gotten the expression on his face when he looked at me like, "Mom, did you see how close that thing got to my head!?" That's me and Poppa talking about him while he is mesmerized by his mobile and then his daytime primary nurse Danielle oohing and aahhing over him.

video

This is a short video of Bryce in his new swing Miss Jennifer and her family gave him at the shower last week. As you can see, he's a huge fan.



video

Monday, October 26

Surgery...again

Sorry for the lack of posts, it's been a busy week. We had our *amazing* shower on Saturday and now we're going back down to the OR for a new shunt first thing tomorrow morning. And so far we're still on track for discharge next week. Like I said, busy.

I'll try to update everyone tomorrow with the surgery news as I have it.

Thank you all for your love, support and prayers.

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Monday, October 19

Uh Oh!

There's been an alarming development: they want us to leave! Can you believe it? I CAN'T.

They've officially given us notice that we are expected to be vacating the premises in two to three weeks. Uh Oh.

Of course we always knew this day would come but it was always far off in the distance, kind of like never, never land. But now that red exit light at the end of the tunnel has turned from a soft, taunting glow to a legible command.

I already asked which nurse we could take home and how they were going to run the leads to Bryce's monitor all the way to Cedar Park.

They laughed at me.

As if I were trying to be funny.

Friday, October 16

Bryce Wearing a Tie

I made this little onesie for Bryce and apparently got him in it just in time because it's bulging at the seams! He weighed in last night at a whopping 8 pounds, 1 ounce! A whole lot to love on this boy ;-)


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Thursday, October 15

Wednesday, October 14

All done, surgery went well. Just waiting for Bryce to wake up now.

Surgery today at 4 pm

Bryce having ROP surgery on both eyes today, has to be reintubated because procedure is very painful and he'll need general anesthesia. I'm having a particularly hard because I thought we were done with these things: surgery, IV's, intubation, etc. Caleb is at work so it's just the two of us and I just want to hold onto him as tightly as I can until they have to take him from me.

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Tuesday, October 13

A New Plan

Bryce and I have a new plan for learning to breastfeed - together! We're very excited about it, well at least I am and Bryce seems to be.

Instead of trying to feed Bryce from a bottle every other feeding and let him breastfeed up to two times per day (our old plan) he now gets to exclusively breastfeed up to five times per day. His other three plus feedings will still be gavaged (given through a tube direct to his stomach) to allow him to continue to build his strength and endurance.

We're very happy about this plan because it allows us the opportunity to go home exclusively breastfeeding, which was our desire all along. Bryce is also much better at breastfeeding than taking his feeds from a bottle and it allows us some more special bonding time.

Additionally, with the new plan Bryce is allowed to give us feeding cues as to when he's hungry. This means no more waking him up from a dead sleep to try to feed him just because it's been exactly three hours since his last feed. He can now eat every two hours or go as much as four hours between feeds if that's what he wants. I prefer this as it seems much more natural.

The down side of this new equation is I can't be far from the hospital - as if I ever am. But now I need to be available to him anytime he's hungry, which can be anytime. I don't mind much though because I know it's what's best for him and sleep is over rated anyway, right!?

Thursday, October 8

I see a light...

...and I think it's at the end of this tunnel!

Bryce's CT scan showed good results, his ventricles are smaller than a week ago and his shunt is functioning properly.

It's looking like we just might be getting to take this sweet little boy home someday soon. And by soon I mean hopefully in the next month.

Right now Bryce is on 2 liters of oxygen, he'll need to get that number down to less than one and hopefully none first. Also, he's currently taking close to half of his feeds by mouth. He'll need to be taking them all by mouth in order to go home.

The ophthalmologist is coming every two days now to watch Bryce's eyes. They are concerned about ROP (retinopothy of prematurity) which can vary from needing glasses to blindness. Bryce's eyes are maturing very slowly so it'll likely be two weeks before we know the extent of his eye issues and what will need to be done, if anything, for them. His eyes will have to stabilize before we can take him home though.

We did our infant CPR training today, so that's out of the way. We'll have to bring in his car seat closer to going home so he can sit in it for an hour. They call this a car seat study and it's to verify that he doesn't have any trouble breathing while in his car seat. Then we'll room in for a couple of nights to prove that we are capable of caring for all of his needs, make a bajillion specialist follow up appointments for the following weeks and load him in our car!!

Needless to say, we are ecstatic but equally terrified. We are so comfortable here in the confines of the NICU where if there is ever any question there is a team of professionals standing by to answer, instruct or demonstrate. What will we do when we're all alone with the precious baby in our own home? I tell ya what. We'll love him and spoil him and spend a lot of time just being. Especially since he's not supposed to leave the house much for a couple of months anyway, being so vulnerable to illness. But that is okay with us, just a good excuse to hog him all to ourselves!

So the only thing we have left to do is finally have his baby shower. Funny, we cancelled the first one because he spoiled our grand plans of a weekend at the lake with friends and family by coming well before the shower date. Now we've finally planned another for Oct. 24 and we're beginning to wonder if we shouldn't have planned it a month ago - we might be home by now if we had. Since, it seems, Bryce is determined to foil all of our grand plans.

In my heart of hearts though I think he'll be home after that but I won't put anything past our little guy. Ever. And please remind me of that in ten or so years.

Here's a hodge podge of video from the last week so you can see how cute, ehh umm, I mean how well our little Bryce is doing...


video

Sunday, October 4

Progress

Bryce is making steady progress on both his feeds and breathing.

He is now breastfeeding several times a day and taking a bottle as well. He took about 3/4th of his 11 pm feed from a bottle for Caleb last night - and also gained significant weight over the last couple of nights.

We are so proud of him and are starting to let ourselves get excited about the prospect of taking him home soon (soon = maybe a month or so)! It's a very real possibility as long as his shunt continues to work and he keeps up the good work.

More coming soon...

XOXO ~the moline fam

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Wednesday, September 30

YOU are awesome!

Thank YOU for your comments and your visits, your thoughts and your prayers, your smiles and your tears...we couldn't, wouldn't, can't bear the thought of being here - right here - without every single one of you. You've carried us when we were weak, you've helped us along when our burden was heavy, you've stuck by us through trial and triumph. We love you, every single one of you...stranger, nurse, RT, friend, aunt, mother, father, sister, brother, friend of a friend and family of family...can't imagine where we'd be without you, so grateful for where we are because of you. Thank you. We love you. Forever Grateful.

Here's...BRYCE

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Shocking

Yesterday morning Bryce shocked his day nurse by taking 15 cc from a bottle like he'd been doing it his whole life. She thought he'd take 2 or maybe 3. She also warned me that he might aspirate (breathe while sucking) or brady (drop his heart rate) - he did neither.

Last night Bryce shocked me, Caleb and his night nurse by latching on and nursing for fifteen minutes! When Caleb went to get the nurse to ask if he needed his feed shortened because he was breastfeeding the nurse had to come in and see for herself because she didn't believe he could be doing it already. He was, she witnessed it and then bragged to the doctor too.

Guess that whole 40 weeks thing isn't just a number pulled from thin air...babies need it, even the ones that make their appearance much, much earlier.

At 2:30 p.m. today Bryce will have been off of the ventilator for a full three days. We can't believe how blessed we are to be making such amazing progress this week!

I'm pretty much speechless, well that and scared to jinx it...

Monday, September 28

What a Wonderful World

Life in the NICU has suddenly taken a dramatic turn for the better and we couldn't be happier!

As always, I'm too cautiously optimistic for any one's good but I've been burned too many times to be any other way.

And still, I find myself feeling like, well, "Self, this is what it's supposed to be like...more or less."

Bryce is doing so fabulously it seems like an awesome dream I'll wake up from any second. In much the same way I bolted awake every hour on the hour all night last night to panic and double check that the light in his room wasn't on, that there wasn't a room full of people reintubating Bryce while I slept.

The docs were so impressed with Bryce this morning that they decided to go down from 6 liters to 4 liters per hour of high flow nasal cannula. He didn't skip a beat.

Oh and we had a meet in greet with the boob. That was interesting. Not really anything in the world that can prepare you for that.

Of course, he either screamed his head off (BECAUSE HE CAN DO THAT NOW!!) or slept soundly despite all the nudging and tickling in the world.

We'll try again tonight and then again tomorrow with the lactation consultant.

In the words of the wise G2, "I hope Bryce is a breast man."

bryce breathing and mad-20090928

Bryce fussy but doing great!
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Saturday, September 26

Change of Plans

There's been a change of plans and this time not due to Bryce - imagine that!

Bryce's planned extubation has been moved from Monday to tomorrow, early afternoon. He'll be getting his first dose of steroids this afternoon and until extubation. Following extubation another 24 hours of steroids is planned.

I'm scared to put this in writing but I feel good about this time. I've seen him breathe with nothing but a little extra oxygen and his tube stinting his airway open. Plus the ENT surgeon make two small incisions on Tuesday to help his airway open a little more. His oxygen and vent setting needs are as low as they've ever been.

And let's not forget - he is full term now!

Hard to believe I'm supposed to still be pregnant (well, maybe) but I have to say it's hard not to feel lucky that I get to hold him everyday. That I already know his personality. That he already knows us.

Wish us luck tomorrow and we'll keep ya posted!

Happy Due Date today, baby Bryce! You've changed our lives so completely but we wouldn't trade it for anything!

Tuesday, September 22

Broncoscopy Results

Bryce is back in his room getting settled. The ENT said he didn't see any extra tissue or abnormalities that he could fix surgically. He feels fairly confident that Bryce's muscles just aren't strong enough but advised one more good effort with a round of steroids. If that doesn't work then we'll have a sit down about doing a tracheotomy.
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Monday, September 21

My Boys



Playing with Picnik = fun! This is a picture of Caleb and Bryce from Aug. 20, I can't believe how much bigger Bryce is than a month ago.

Quality Time

Trying to get as much Bryce time as possible before the great unknown tomorrow.
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Thursday, September 17

Oxy Hood Trial

On Tuesday, after Bryce's self extubation fiasco on Monday, we experimented with an oxy hood to see if Bryce was unable to sustain CPAP because his lungs are too sick or because his airway isn't allowing sufficient air to enter his lungs.

The way it worked was they disconnected Bryce's ventilator from his ET tube and then put a plastic bubble over his head. They pumped oxygen into the "hood" and waited to see if he immediately began to go down on how well he oxygenated his blood or not. He did not. This means that his lungs are not the issue, his airway is.

As you can see in the short video of the trial below, Bryce barely even noticed his ventilator had been taken away...

video

Unfortunately though, this means Bryce will be making another trip down to the OR on Tuesday to have an ENT scope all the way down his airway into his trachea both with and without his ET tube. Removing his ET tube is always risky because if they can't get him re-intubated when they need to he cannot breathe.

There are several ways this could end up on Tuesday. The ENT may see some extra fleshy skin in Bryce's airway that can be removed and help him to clear his airway to breathe without the ventilator. Or the ENT may see that there is substantial swelling of his airway due to being intubated for so long and send him back to the NICU to try a course of steroids to extubate him. Or there may be scar tissue or some other physical obstruction that only Bryce's growth will solve, in which case we will have a serious conversation with all of his doctors about a tracheotomy. There is also a small chance that something will either happen or be seen on Tuesday during the scope that will necessitate a tracheotomy be done right then.

With each of these possible outcomes on Tuesday comes a plethora of other possible outcomes as well in regards to how soon Bryce may be able to go home and what kind of care he may need when he does go home.

It's too much what if to go into here but needless to say we wait with baited breath.

Ultimately, we can honestly say that whatever is best for Bryce is what we want. If that means we live at the hospital for another year or that means we take him home in a month or two with a tracheotomy, ventilator and feeding tube than so be it.

It's funny how the second you have children your life ceases to be about you at all but completely about them. And even funnier how little we mind.

Here's Bryce sitting up today (with a little assistance) while he gets his CPT to help clear the pneumonia junk from his lungs. Yes, that hand is smacking him. That's his RT breaking up the secretions so they can suction them out. He usually loves it, as you can see by the look on his face here.

Monday, September 14

Par for the Course

In true Bryce fashion - completely unexpectedly - Bryce went ahead and extubated himself at 3:30 this morning.

Apparently he was swaddled and on his belly when his nurse left. His respitory therapist just happened to be walking by as he de-satted a little so he walked in to see what was going on. Bryce had flipped himself over onto his back and pulled out his own ET tube.

NOT ok.

But trying telling that to a cute-as-a-button, tiny little baby.

Unfortunately, he had not gotten his dose of steroids and no one had prepared the CPAP machine so there was frantic calling for his steroids stat, calling me to let me know what was going on and trying to get his CPAP set up.

NOT a great start.

But Bryce does things his way.

At about ten minutes until 6 this morning Bryce was reintubated. He struggled from the get go on 100% oxygen and just couldn't keep his airway open well enough to get good breaths. But as soon as he was reintubated he was back on meager vent settings and less than 40% oxygen.

The nurse practioner that reintubated Bryce this morning noticed that his airway was swollen and surprisingly contracted. She suggested that on his next extubation we go down to the OR to have an ear, nose and throat specialist (ENT) scope his airway for abnormalities. Maybe there is a physiological problem that can be fixed. Maybe the ET tube is serving as a stint for his airway and once it's gone he simply can't keep it open on his own. The ENT will be called to consult today.

Needless to say, we're all a little disappointed around here today. Parents, nurses and RTs alike. But there's always the relief that comes with seeing him comfortable and no longer struggling for air. We'll try to focus on that positive to get through the day.

Sunday, September 13

Progress

Bryce is noticeably better again today and extubation talks have resumed.

Currently the plan is to extend his antibiotics to ten days, an additional three from today. They've also given him a diuretic to help pull any excess fluid from his lungs.

He'll get the first of either three or six doses of steroids tomorrow and be extubated four hours later.

Please strengthen Bryce with your thoughts and prayers as he needs to get this tube out in order to get on the path to home.
Sent on the Sprint® Now Network from my BlackBerry®

Saturday, September 12

Bryce's endless IV sticks have me in a dour mood today - it's so hard to try to understand why such a sweet & innocent little soul should have to endure so much

Friday, September 11

On the Mend

Our sweet baby Bryce seems to be turning a corner. He came down with pneumonia early this week and has been fighting hard, as always, to surprise everyone, again - as always, and pull through.

Unfortunately, it's been a long week of blood cultures, new IV's, complete blood gas tests....sticks, prods and pokes. He's an amazing little guy though and is taking it all in stride.

Currently he has me metaphorically tied to his bedside; if I try to leave even for a moment he makes big trouble for such a little boy. He's amazingly strong and I know I'm a little biased (okay, maybe a lot) but lying on his belly with his head turned to one side he can arch his back and pick up his head, turn it and all of his tubes the complete other direction.

This would be impressive except that everyone freaks out that he's going to self extubate. We've had long conversations about him leaving that tube in until he's ready but despite my best effort I don't think he cares one bit about my advice. What's a mother to do?

He's getting so big that this morning when I walked in and saw him naked except for a diaper I almost asked his nurse whose baby this was and where mine is. Fast approaching 6 pounds and still weeks before his due date I can't help but wonder how big he would have been if only he'd stayed put.

I suppose his early and adventurous entrance into this world and our lives is only a sign of things to come though. I can't wait for the havoc he will wreak as he continues to grow bigger and feistier over the years. And I can't help but wonder if he and his throw caution to the wind attitude aren't exactly what I needed in my life. I know without a doubt that, regardless, he is exactly what I needed in my life.

Wednesday, September 9

Bryce having a rough day, xray today was worse and C02 very high this am but coming down, new antibiotic started and new blood, urine & ET tube cultures taken

Monday, September 7

Pictures!

Bryce in pants!

Our Cutie Pie!


Big Boy "All Star"


Hangin' on to Mommy!



Bryce and Mommy!


Bryce sleeping yesterday morning...yes he got his hands tucked under his chin all by himself. And you can see his shunt on the side of his head where it will stick out until he gets some more fat and hair to camouflage it.


Wide awake after his bath last night and in fresh jammies - the feet say, "On the Go."


Horton is finally complete, my hands hurt but it's well worth it!

Wednesday, September 2

The Wall

Where to start? I know it's been awhile but each day since Friday
I've wanted to write and just lost the lust. Every day has started
one way and seemed to end another.

Saturday it was decided that Bryce would be extubated again to try
CPAP. We waited all day but it never happened. Another baby on the
unit was "desperately sick" as Dr. Hodges said and they wanted to wait
until they could give Bryce more attention to extubate. So we went
home on Saturday night. We weren't there long as we wanted to be back
early for the extubation on Sunday but we had a great night. Lauren,
Jeremy and Danae came by for a couple rounds of Farkle and loads of
much needed laughs.

Early Sunday morning I called my mom, who was sitting with Bryce all
night Saturday and from very early Sunday morning, to check in. She
unfortunately had some bad news that she and our nurse decided she
should tell me before I walked into it. The other baby who had been
desperately sick the day before had passed away over night. I hung up
the phone and just cried.

I can't think of a single thing more unjust than a sweet, innocent
little baby going through everything they have to endure in the NICU,
fighting for their lives every single day, to lose that battle. It
breaks my heart.

That poor baby and that poor family. I prayed for them when I prayed
for Bryce but it never actually occurred to me that this could
happen. Each time I enter the unit now, I stand at the scrub sink
trying my hardest to wash away the dirt, grime and germs of the
outside world while staring at the empty room at the end of the hall
where so many times I saw him crying in his bouncy chair or being
paraded about by his nurse.

Babies come and go pretty steadily around here but when they go, when
they leave their empty rooms behind, they are supposed to be home
playing, learning, laughing and growing.

And so it was with a heavy heart and a dampened spirit that we
returned to Bryce on Sunday morning for his third CPAP trial. He
lasted about six hours but he struggled most of that time, gasping for
air and dropping his heart rate. He tried his best but just couldn't
do it. We were all so relieved when they finally decided to
reintubate him that evening, especially Bryce. He looked up, wide-
eyed, at his tubes as if they were his old friends back at last.

It's hard for a mother to watch her child struggle, to helplessly
stand by as they work so very hard just to breathe. I hope and pray
every single day that someday we won't have to endure such things,
that Bryce will be blessed with better days. Days of uninhibited
laughter and play.

Monday morning I awoke a little bleary eyed from a long couple of days
and little rest. I pumped as I do first thing every morning and
walked to the freezer down the hall at the Ronald McDonald house to
put my milk away. I opened the freezer to two bottles of milk with
the name of a baby that would never have that milk. I broke down. I
couldn't help but think that his poor mom had walked my same steps
only to go home without her precious boy. I returned to our room and
to our bed, where I stayed until late in the day. Finding it hard to
muster the motivation to rise again, to dress or shower or return once
again to the NICU, I just lay there. Hour after hour I went over and
over in my head how and why this could all be happening. How is it
that this has always gone on and will continue to go on with so few
knowing. I didn't know. Before Bryce, I had no idea.

Eventually I did get up and I did return to the NICU. I walked in to
knowing and understanding faces in my new friends, our nurses and
RTs. Without explanation they knew, they've seen it too many times
before. Jennifer said it best, she said, "you hit a wall."

And then she said they all talk about how amazing I am because I
hadn't hit it sooner.

It's a nice thought but I think I've hit that wall so many times I've
become accustomed to it. I'm just usually much better at picking
myself up, dusting myself off and pretending like everything is honky
dory.

That evening I held Bryce for several hours. I stared at his face and
kissed his hand, I cried with him and sang to him and felt a sense of
renewal merely from his being.

Friday, August 28

Exciting Times

Bryce's recovery from surgery continues to progress slowly but steadily. My hopefulness increases as each day passes and I see him acting a little more like himself. He's still pretty out of it from the pain medication, morphine tends to have that effect on people. And he's still pretty twitchy/quivery which of course worries me but doctor after doctor after nurse practioner has assured me that they aren't concerned by it. I still am anyway, but c'est la vie.

I was able to hold him for a couple of hours last night and he rested comfortably and peacefully the entire time. If I could just hold him all of the time I think we'd both be all the better for it.

He was pretty restless after we put him back and continued to flail this morning but we finally got him on his belly this afternoon and he is totally conked out now. I think he just exhausted himself.

Neurology came by late yesterday afternoon and again this morning. They are very happy with the shunt's placement and are sure it is working well. Additionally, they are very pleased with his incision sites and overall recovery. It's always nice to hear such positiveness from that bunch.

This morning during rounds everyone else also seemed very pleased with Bryce's recovery so far. He's back up to full feeds now and talk of extubation has resumed. Dr. Hodges even asked me what I thought of extubating Bryce ...today! I was rather shocked and said honestly that I felt he wasn't ready. I think my point about his riding the vent while on the morphine was well taken and we all came to a mutual agreement that one more day of recovery certainly can't hurt.

That means tomorrow could very well be extubation attempt number three. I so hope he can do it this time around! If we can get him extubated and on CPAP then they'll start getting him to try "nippling" his feeds - taking some from a bottle. If he can get the whole suck, swallow, breath repetition down consistently than there is a good chance I may eventually be able to breast feed him. It's a long shot but I know it would be so rewarding for us both.

Well, I'll be sure to keep everyone up to date as CPAP is tried again in the next few days. Thanks for all of your encouragement over these last few hard days. We'd had so many good ones I think we forgot how bad they can be. Here's to many more good ones!

Thursday, August 27

Bryce still pretty out of it, doing some distinctly neuro-y things that have me worried but still waiting for CT scan results and neuro visit

Wednesday, August 26

VP Shunt Recovery

Bryce's VP shunt surgery was yesterday. The surgery itself was excruciating - for me. It took much, much longer than all of the other surgeries as they had to remove the two existing subgaleal shunts and then place the new ventriculoperitoneal (VP) shunt. The new shunt has a line that runs just under Bryce's skin all the way down to his belly where it will divert the excess cerebral spinal fluid not being reabsorbed in his ventricles, where it does on you and I.

Here is a great article, with illustrations, explaining VP shunts.

The surgeon said that everything went really well and they didn't have any problems during the procedure. Of course, that is only half the battle. The other half is hoping he doesn't get any sort of an infection from the shunt, which could be very bad, very quickly.

Dr. Lee, the neurosurgeon, said that usually infection will become evident within in the first couple of weeks and the threat of infection is almost none after six weeks. So, we'll be watching Bryce closely for higher oxygen needs, fever, lethargy, etc. Please keep baby Bryce in your thoughts and prayers. He has been through so much already, I can't stand the thought of him getting an infection after all of this.

Sometime in the near future Bryce will also have his first CAT scan. The docs will be looking at the placement of the shunt in his brain. Dr. Lee hopes that he was able to shunt both ventricles but apparently won't know for sure exactly where it is placed until they can see a CAT scan. I am, of course, weary of the procedure but also anxious to see the results. There is a possibility that the shunt is in only one of Bryce's ventricles and that the other will continue to swell as they both have in the past. If this is the case then we'll likely have to go back through this in the next couple of weeks for a bilateral VP shunt. Please God, no.

I am putting my best foot forward, trying with all of my might to be strong and positive for my sweet baby boy. But it's been a real challenge over the last 24 hours. I won't lie, or as Jason might say, I won't sugar coat the truth - I am having a hard time with all of this. I just have this awful feeling in the pit of my stomach that I can't shake. I want so badly for all of this to go well, for Bryce to come through this stronger and healthier, ready to take on the next challenge. Maybe wanting that so badly has me scared to be optimistic?

Monday, August 24

Musings on Reason

So tomorrow is the day, the day Bryce gets his VP shunt. As I've said at least once before, we are so happy that this is potentially our last pilgrimage down to the OR. But I'm so nervous about a bigger, more invasive surgery for poor baby Bryce.

It's hard not to ask why. Why does this sweet little baby, so innocent and fragile, have to endure these hardships? Why do I have to stand there, frozen in fear, as the team of nurses and doctors wheel him into his sixth surgery in not even twice that many weeks of life?

But I suppose, no I know, that we all have pleadings of why in our lives. Sure some are more profound, some more enduring and many less obvious but just as valid.

So I pick up my head, pull back my shoulders and smack a smile on my face whenever possible. I focus on the positive. And there is so much.

The joy of holding my son before he was even supposed to be in this world. The pride of watching my husband ask intelligent, incredibly detailed questions of the doctors that I simply would never think of. The wonder of already knowing the many quirks and personality traits of a person so small and so early in his life.

Really, aren't I, in many ways, quite lucky?

I have a miracle to stare at each and every day, a miracle of my very own. Well, I guess I have to share him with his dad.

And I get the delight of sharing a little piece of him every day with all of you. Many of whom I know well and many of whom I know nothing of at all.

Staring into his at once bright and also dark eyes, seeing Bryce look back at me, knowing he now knows me as his mom, all the whys and what ifs fall into the blurry background. And what is important, what is true and known for as long as time, is clearly, distinctly right in front of me.

Friday, August 21

Friday Update

It's Friday again already? My how time flys in the NICU...well, at least when Bryce is doing well. And boy oh boy is Bryce doing well.

He's 4 pounds, 4 ounces and gaining almost daily.

The docs adjusted his feeds for his new weight this morning so he's getting 40 cc of 27 calorie breast milk every 3 hours and tolerating it amazingly well. They had to adjust his feeds to go in over two hours (up from one hour) because his glucose was getting low between feeds. That did the trick though and he certainly doesn't seem to mind.

The gang of neurologists that stalk the halls around here made another surprise visit this afternoon. Actually they just left. Dr. George wants to hold off on making any concrete plans until after the weekly head ultrasound they do every Monday. He said he can tell that the pocket of fluid is a litter stiffer but it seems to be holding up really well.

All in all it also seems from my perspective that Bryce's head must be okay right now. Usually his oxygen needs go up and he becomes less tolerant of even the most minimal stimulation when its shunt time again. But he's hanging out at 32 - 36% oxygen and wide awake for at least a couple of hours in the morning and evening. He looks around all bright eyed, following voices, movement or his new mobile.

He's also got several nurses and respiratory therapists so wrapped around his cute little finger that they will gladly stand at his bedside for prolonged periods of time holding his paci for him. You see he absolutely loves it but he sucks so passionately on it that he pushes it out of his mouth. It's pretty much the cutest thing. It starts with his nose moving up and down with the sucking, then pretty soon his whole head is working on the movement, his jaw smacking up and down dramatically, even his ears get in on the labor.

Caleb's big, persistent request finally became a reality yesterday. He's been asking and asking to hold Bryce like a "real" baby (his words, not mine). And yesterday he did. I keep reminding him that Bryce is a "real" baby - trying to persuade him of this so he's ready for the day they let us take him home. Of course, Caleb knows he's real but he wanted so badly to be able to hold him facing up so he could stare at him the whole time. And, indeed, he did stare at him for a solid hour yesterday as they both got to enjoy some special time together.


Well, we're heading home again for the evening tonight. I'm excited to be picking up a Pottery Barn changing table I found on craig's list for Bryce tomorrow morning and putting the first piece of furniture in his nursery. It's finally starting to come together and I know it's going to be great. Abuelita has been working hard on it and so far the blue walls are done, the green Seuss hills have been added and the Lorax begun. Caleb installed the rope lighting last weekend and we put up his big red B I found him too.

Here are some pictures of where we are now. I'll continue to post updates as progress is made.



Thanks to everyone who has sent or brought gifts recently. I'm sorry I haven't had a chance to formally thank you for the cutest preemie clothes (he wears them all the time and is oh sooooo cute in them), homemade cookies (Bryce got a little taste from my milk and said they were the yummiest - Daddy and I agree whole heartedly) and blankets (he regularly goes through several a day).

And of course, thanks for continuing to stick by us with your calls, comments, prayers and love. We can't even imagine how other families get through this without all of the love and support we have - we are so blessed, in so many ways.

Tuesday, August 18

A New Friend is Born

My precious baby boy is growing up so fast! He's now officially 4 lbs and 3.5 oz!! I held him in my arms this morning and he looks just like a regular new born now, well only a bit smaller.

No new changes today, except that Bryce no longer has any IVs, PIC lines or ART lines. He is wire free - now if we could just get that tube out of his mouth we'd be making some serious progress. All in due time.

I was blessed enough to witness another birth today, too! One of my oldest and dearest friends, Jennifer, had her own baby boy today. Cayd was born at 1:40 p.m. weighing in at a whopping 6 lbs 14 oz and was 20 inches long. When I saw Cayd all I could think was what a miracle child birth is...well that and, holy cow that baby is HUGE! Of course, he is just right. Just a bit bigger than our precious boy.

Watch out Cayd - Bryce is working on growing big and strong so you guys can keep your moms on their toes together someday. Just like we used to our own parents!

Monday, August 17

Special Visitors


We had a couple of special visitors today! Bryce's Great Aunt Rhoda and Great Uncle Chuck came by today to see how he's growing. It's been a few weeks since they were here and they were so pleased to see he's bigger and more alert than ever. He opened his eyes wide open for them and they even got to witness a temper tantrum as he was having his diaper changed.

Of course, neurology just came by as well. Bryce's weekly head ultrasound was this morning. It hasn't officially been read by the neurologist yet but the neurology nurse practioner reviewed it and said it looks mostly the same as last week. She was pleased with his growth and surprisingly said she thought we might be able to set up Bryce's VP shunt. We are excited because it means there is a chance this could be the last time we have to take him down to the OR but hesitant because it's a new, more complicated procedure.

I'm trying not to get too ahead of myself though because it can all change in the blink of an eye.

Sunday, August 16

Big Boy Bed



Yep - Bryce is no longer an incubator baby! Okay, okay so they don't actually call them incubators anymore. The PC term is "isolette." Same difference and no matter anyway because Bryce is in a crib now!

He is so stinking cute in it too, if I do say so myself. It's the most wonderful thing in the world to be able to walk right up to him, rest my head on the edge of his crib and just watch him sleep. Or talk to him and know that he's hearing me loud and clear.

I loved having visitors yesterday and watching them all stand around him and coo over him. I think he liked it too.

Abuelita and G2 stayed with him most of the day yesterday so we could enjoy our weekly hiatus home. But then Jeff and Mary brought by Bryce's girlfriend, Adalyn, for a visit. Of course, Adalyn had to stay out in the waiting room with uncle Caleb and Jeff was more than a little concerned about this but they both did great! And we were thrilled to see a cute little baby we could hold and pass around. I can't wait until that day with Bryce.

Wednesday, August 12

33 weeks, 4 days

I'm so sorry I haven't updated sooner! I've had my hands full these last couple of days holding tight to my baby boy. Oh, and we went home on Saturday night and spent our longest time away from Bryce so far - almost 24 hours. It was good to get away but we were ready to be back.

Well, Bryce's second CPAP trial didn't last long but he gave it a fighting chance. We're working toward a more reasonable goal of weaning his vent settings as low as possible before trying again.

Of course, that'll also depend on surgery.

A follow up ultrasound on Monday showed a shift of excess fluid from the side that had a new shunt placed last week to the other. The "plan" is to wait and watch. As long as the fluid doesn't build then they'll leave him alone but if it does than they'll likely place one more of these temporary shunts before finally doing the permanent, VP, shunt. A baby like Bryce, though, cannot go to surgery without being on a ventilator so it's hard to get excited about extubating him to CPAP only to put him back on the vent at least once for a surgery.

Otherwise Bryce is doing great. He's still on full feeds and tolerating them very well. He's been on a 24 calorie milk mixture but today they went up to 27. Since he is still on his pain medication they can't go up on his amount because it would over hydrate him. But the plan is to have him off of his pain med. on Saturday and then they'll probably go up on the amount then.

Gain, gain, gain - weight and strength - that's the goal.

Weight wise Bryce was up to 3.99018 pounds two nights ago (I prefer to be exact, if you couldn't tell) but is down a little over the last couple of nights. I suspect he'll hit the four pound mark any day now though. Very exciting!

He's also on a trial of maintaning his own body temperature. They started him by turning his bed on just fan a few days ago. That went well so last night they opened his bed and bundled him up to see if he can handle being in an open crib. We're working our way toward a real crib. Once we do that and get him on CPAP we'll be able to just reach in and pick him up pretty much anytime. That will be a great day.

Lastly, the eye doctor came by for his second exam yesterday morning. He seemed shocked and said that it was amazing that this former 24 weeker doesn't have any signs of eye disease. He'll continue to check him every two weeks until 45 weeks just to be sure though.

Bryce is 33 weeks and 4 days now. He still has six weeks and a few days until his due date.

Friday, August 7

CPAP Attempt Numero Dos

A little out of the blue this morning the docs decided to give Bryce another try at CPAP. It was just two days ago they were saying the plan was for next week. I rushed over just in time to catch them trying to calm him down after all of the commotion. It's been non stop since then.

He's trying really hard and I don't want to jinx it but my feeling is that he's not quite ready. I hope I'm wrong and that he just needs to settle into it but his oxygen needs have been between 70 and 100% since extubation, and he's still only saturating his body with between 80 and 90% oxygen. He's also had a couple of serious desats (59% to 69%) that he's taken a long time to come back from.

Feeds went up again today and so far he seems to be tolerating that very well. But he was supposed to eat at noon and didn't due to his still being so upset. If they have to reintubate they don't want him to have a freshly full belly.

I'll update more as I know more.

Wednesday, August 5

Shane

Unfortunately, Caleb's big brother, Shane, passed on in the early morning hours yesterday.

Shane was one of those people that was always bigger than life. He pushed the boundaries relentlessly, took chances many of us only dream of and lived a life so full of daredevil acts that we can only look back on his life in awe, with a smirk on our faces.

Whether he was scuba diving for ancient relics off the coast of Bahrain, trying to land the big one out at the lake or hunting for arrowheads in the hill country, Shane did everything with a sense of adventure and enthusiasm I've always envied.

We are so sad that baby Bryce will never get to know his uncle Shane and his crazy ways. Shane told Caleb that he wished someday he could throw a football with Bryce. Shane, we wish the same - more than you could know even from where you are now.

But we find peace in the knowledge that Shane is back to his whole self now. He's somewhere up above or all around. I like to think he's watching over us all; willing us to take a few more chances, travel a little further, laugh a little louder, love a little harder and give in to this crazy ride that we call life.

Thanks, Shane. We love you and will forever miss you.

______________________________________________

Visitation to be held at the Dripping Springs Methodist Church on Ranch Road 12 in Dripping Springs, TX from 9 a.m. to 11 a.m. on Thursday Aug. 6, 2009. The funeral will be at 11 a.m. and followed by the burial at Phillips Cemetery also in Dripping Springs. Lastly will be the receiving of friends and family at the First Baptist Church of Dripping Springs' banquet hall.

Surgery Recovery Going Well

Bryce's surgery was deemed a success by the neuro team yesterday and his recovery continues to impress us all. He seems quite comfortable, focused on sleeping and growing. He'll have feeds started back today and we've got our fingers crossed that he will tolerate them well. Maybe he'll even be back to full feeds tomorrow. We can hope.

Monday, August 3

Back by Popular Demand...


Pictures of Bryce

Bath time...Bryce is not a fan...


Bryce looking at Mommy's hand intently while contemplating extubating himself (again)...


Bryce all dressed up for the first time. Daddy trying to calm him down after his bath with his paci. No that is NOT a dress - that's a size preemie shirt!
Still not happy, notice the movement of his right foot - the leg kicking thing is how you know you've really made him mad.

Finally calming down thanks to his paci. Now if he could just get that person to stop pulling on his ear he'd really be happy. He has no idea that person is him!
And this one is for the ladies!

Full Feeds

YEAH! Bryce began full feeds yesterday. Full feeds means he is getting all of his necessary nutrients from my milk! This is so exciting for us because it shows he is able to tolerate my milk and process it quickly enough to eat every three hours just like a full term new born would do. They're even adding a protein fortifier to his milk which adds 2 whole calories to each feeding for a grand total of 22. I liken the fortifier to a free boost from Jamba Juice - it's a little powder they mix in to make it even just a little more healthy than it already, naturally is.

He was on the full feeds all of yesterday and last night and has had little to no residuals. Every time the nurse feeds Bryce she puts a syringe on his feeding tube (that goes down his throat into his tummy) and pulls back to see what, if anything, hasn't yet been processed from his last feeding. The first sign of feeding intolerance is "high residuals" but Bryce hasn't had any!

Unfortunately, Bryce's surgery is tomorrow and so he will have no food for 4 hours prior. We're not yet sure what time they will schedule the surgery for and probably won't know until this afternoon sometime. After he comes back from surgery and begins to wake up - a couple more hours - then they will likely start him back on half the amount of food he is getting now. If he tolerates that first feeding after surgery well then they'll probably go right back to full feeds every three hours with the very next feeding.

Caleb and I hope and pray that baby Bryce tolerates this surgery as well as he did the last. If he can come back on about the same ventilator settings as he leaves for surgery on (like he did last time) then the docs will most likely try to extubate him to CPAP again sometime around Friday. And if he comes back and goes pretty much right back to full feeds he'll be even bigger and stronger on Friday - and hopefully better equipped to stay on CPAP than he was last time. He's already so much bigger than just the week before last when they tried the first time. But only time will tell.

My sincere apologies for taking the weekend off from updates. We were so busy between the hospital and visiting with Caleb's brother while we still can. We also managed another "vacation" to home on Saturday evening. It was our most relaxing yet, maybe because we cooked and cleaned and so it genuinely felt like home. Of course, walking into the NICU feels more like home than any other place right now. When we're not at the hospital all we think about is being there. We laid in our seeminly gigantic bed on Saturday night, where there is an ocean between us (so nice!) and imagined Bryce laying there with us some day. I cried.

There is simply nothing in the world I want more than to take our little bundle of cuteness home with us. And I can finally say that I feel in my heart we will get there, we are all going to make it to that glorius day. And as G2 said so many weeks ago - we'll break out the brass band the day Bryce goes home!

Friday, July 31

Back to Surgery

Well Bryce's new subgaleal shunt, put in a week ago last Wednesday is doing a great job of draining the excess cerebral spinal fluid off. But the ventricle where the shunt from before was is now swelling. The swelling was first noted on Monday but the plan was to just continue to watch it with the weekly head ultrasounds. A sudden increase in Bryce's head circumference was noted by the nurse last night and so an early ultrasound was ordered and done this morning. The neuro team reviewed it and decided something needs to be done to relieve the extra pressure on Bryce's brain.

We were expecting a neurologist to come in and to a "tap" to relieve the pressure by inserting a needle into Bryce's brain and pulling out up to 10 ml of fluid, which they had done twice before he was healthy enough for his first shunt. Well next thing we knew there was a whole team of neurologists in Bryce's room. We were obviously and immediately concerned but they were just there to say that they are watching him and have him scheduled for a new shunt on Tuesday unless he takes a sudden change before then. I hope he can wait until Tuesday because the taps always made him so uncomfortable afterward but at the same time the pressure and extra fluid in his head have also always made him so uncomfortable.

On top of that Caleb's brother is now at home under hospice care and has taken a sudden turn for the worse.

Please keep us all in your prayers especially over these next few days.

A debt of gratitude,
Our Little Family

Wednesday, July 29

Quick Update

Hi Y'all! Baby Bryce is doing astoundingly well! He hit the landmark weight of 3 pounds (even) last night and is so far still tolerating his daily increasing feeds. He's up to 12 ml every 3 hours now, the most he's ever had.

Just like a normal little baby he sleeps a lot. He's usually awake for an hour in the morning and maybe an hour at night.

He follows our voices, looking for us when he hears us talking to him. His eyes get bigger and brighter every day it seems. And his hair continues to get longer and thicker, it's even beginning to show signs of a bit of a wave. Maybe he did get something from his momma?

Bryce has the biggest stretches, coupled with very dramatic yawns, for such a little guy and they will literally melt your heart!

We're hoping to get to put some preemie clothes on him tonight, too! I even left for a good little while today to search out something special for Bryce to wear for his first dressing. Have no fear - there will be pictures coming soon if we indeed do get to put some of his new, tiny little clothes on him.

Caleb's going to hold Bryce tonight though for sure. He needs some Bryce time more than ever right now, maybe even more than little Bryce needs his daddy time. Caleb's brother is very ill and it's a lot for Caleb to be dealing with. Your prayers for Caleb and his family would be greatly appreciated during this trying time for everyone.

I'll try my best to keep you all posted as things continue to develop for baby Bryce! Thanks for checking in with us!