Friday, June 26

Eyes Pictures...FINALLY!

So here is one of Bryce's first attempts to open both eyes (yesterday) - he was being transitioned from his back to his belly for some tummy time and it was enough stimulation to get both of his eyes solidly open for the first time.

And here's a glimpse into the future as he looks at me with that, "OH MOM!" look.

Sorry for the delay but the anticipation makes it all the better!

And just like that...'s done!

Danae, my dear friend and Dell angel, went to get us some lunch from Chipotle and when she got back we just went out to the waiting room to eat. I told Jennifer, our nurse today, that I'd be right out there as we knew neuro was coming soon.

Fifteen minutes later Danae and I had just finished eating when the doctor and his nurse practicioner came in to the waiting room. I thought they were there to tell me that they'd be getting started but the Dr was there to inform me that they were all done!

He said they drained 9 cc of CSF from Bryce and that he took it very well. They are going to continue to watch him in the hopes that he will gain enough health to do a resevoir sometime in the next week - so as to avoid having to do the tap too many times.

I came immediately in to see Bryce and his monitor showed he was handling it all in stride. As a matter of fact, he was more upset by having his diaper changed than by the procedure. But then again what kid likes to have their diaper changed, right?

I'm so proud of him and he is continuing to do wonderfully today. Keep us in your thoughts and prayers as we continue to feed him and wean his ventilator settings. Best case scenario would be that we are able to get him successfully transitioned to the conventional ventilator while he is still on some of the steroids and he tolerates his feedings well enough to continue to increase them little by little each day! We can only hope and pray!

Playing the Waiting Game

Just wanted to update everyone - we are still waiting for neuro to come up for the CSF (cerebral spinal fluid) tap. We just heard that they said they'll be here within the hour. It should only take about 30 minutes to do the procedure but I'll have to wait in the waiting room while they do it. I'll do my best to post another update after all is said and done with that.

On a side note, we have a different neonatologist on today and he has decided to try to wean the ventilator settings a little more aggressively today while Bryce still has the steroids to lean on a bit. We are optimistic that he will tolerate that well as long as they keep his blood pressure up where he likes it.

He also had some "tummy time" last night - he looked so cute! And seemed to really enjoy it. Even opened his eyes for Abuelita AND Daddy! Caleb couldn't be more pleased. I was able to get a picture of him with his eyes open and I promise to post it very soon.

Thanks for checking in with us!

Katrina & baby Bryce!

Thursday, June 25

My Oh My Things Change Quickly in the NICU

So since my last post, literally minutes ago, we have a new plan of action for Bryce's hydrocephalus. At least, tentatively.

Our neonatologist came in to talk to me, he thinks that although Bryce could go down to the O.R. tomorrow morning and likely be just fine he'd rather not. He, and I as well, don't want to have any regrets or take any unnecessary risks.

So we put in a request to neuro for them to come up to Bryce's room and simply drain the excess spinal fluid from his ventricles with a needle. It's a fairly simply procedure that will put much less of a strain on all involved - most of all, Bryce.

I'm pleased with this temporary solution as I feel confident it will give Bryce a chance to continue to gain some much needed strength. Of course, I was also anxiety ridden thinking of him being moved to another wing on another floor of this vast medical campus.

It's about all the peace of mind this mom feels comfortable asking for right now. So I'll take it with a smile on my face. :-)

I See Eyes!

Bryce's eyes officially opened last night! Of course, he has yet to open them by himself for Caleb or myself but G2 (that's Sharon to those who don't know) was lucky enough to get the first peak last night while we were at dinner...ok, actually she got a wink. And we're not quite convinced he wasn't winking at the hot RT,respiratory tech, who made his Cool Guy sunglasses for him last week.

On another note, I'm pretty sure Bryce's night nurse last night, Tiare, thinks I'm either crazy or stalking her. You see, we can see Bryce's window from our window at the Ronald McDonald house. Of course, we don't leave until sometime after at least 10 p.m. and we're back first thing every morning. So, you'd think we could chill out a little at least for that time.

But no - or certainly I cannot.

Which is why when I was up pumping at 4 a.m. and gazed across the parking lots to Bryce's windows fully aglow I had to immediately call to check in. Poor Tiare actually had her hands in his isolette when they came to find her with the phone but she was so sweet and understanding. She assured me that he was doing well and continuing to be weaned on his ventilator settings, which of course is music to my ears.

She also happened to mention that he had opened not one, but both of his eyes for her! This little turkey seems to really like the ladies - that or he simply finds joy in torturing us because he must know how much we are dying to get a peak into the baby blues.

Which actually brings me to another point - it's official, he has already given me gray hair. You probably think I'm kidding, or just being overly presumptuous. Not the case, I promise. I pulled the biggest, gnarliest, whitest hair out of my head this morning and trust me, this has NEVER happened before! The occasional white eyebrow hair? Sure, okay. A much lighter than the rest head hair? Once, I'll admit. But a pure white, thick as a 50 pound test line, hair from deep within the confines of all the mousy brown?

NEVER... before Bryce that is.

I also have to admit, though, that I'd gladly turn every hair on my head white, or blue, or burnt orange for that matter, if it would make my baby boy all better.

But that's a given.

On a much more serious note, neuro came by again this afternoon, talked with our neonatologist and decided to schedule Bryce's surgery for 9 a.m. tomorrow morning. This is another of those double edged swords that line the halls of the NICU because we know he needs this surgery and we're happy they think he's healthy enough for it but it's risky to move him, especially on the oscillating ventilator. That is still being worked out and I'll keep you all updated as soon as I know more.

Otherwise, it's been a pretty good day. We're continuing the NICU dance - going back on antibiotics, watching his blood pressure to see if he needs to go back on a minuscule dose of Dopamine, changing fluids and putting in a new IV.

Worst part is that he wasn't cooperating for his new IV and so ended up with it in his forehead of all places. Kirby, his nurse, says he looks like a unicorn. I'm not sure how much Bryce would appreciate this whole unicorn comparison but since we like Kirby so much we let her get away with it.

I'll be posting another update today, as soon as I hear some more news on the surgery.

Wednesday, June 24

A Plethora of Information

It's been a pretty good day so far and Bryce is resting and doing well. We haven't been able to wean his ventilator settings like we had hoped but he is stable and not needing more support there. We have been able to begin weaning him back off of the dopamine, for his blood pressure. Less is always more when it comes to how much medication he needs.

We hope to see some dramatic results from the steroid treatment we began the day before yesterday. They will start weaning that tomorrow afternoon so hopefully we'll see some real improvement before then.

The thing about steroids is, well actually there are so many things about steroids:
~ you tend to see dramatic results while they are on them but once they are off they will often take a step backward
~ there are possible long term side effects that may not make themselves known for as much as two years
~ they make babies (and adults) quite agitated
~ they lessen inflammation (swelling) which is their miracle quality
~ but they also lower your immune system which makes the chance of infection that much higher in a body that is already overly vulnerable

So, we can only hope that they will deliver some long term results that will make their necessity two days ago worth the gamble. Only God knows for sure.

Bryce's ART line, a line in one of his arteries that they keep so they can draw blood for constant testing without having to stick him every time, finally went by the wayside. It had been acting up for the last 5 days or so and was no longer giving a good blood pressure so it was just a matter of time. Gina, his NNP today, was able to get one in his other arm, by his PICC line so that he doesn't have to be poked for all the blood tests. We are grateful for this small comfort as well as for the fact that it means he actually has one arm free again.

Unfortunately, they have cultured some fluid they were getting back from where his breathing tube is in his throat and found it positive for growing yeast. This is very serious as a yeast infection can be deadly in a baby Bryce's size. Fortunately for Bryce he is not acting sick and so they are going to go ahead and start treatment for a yeast infection with Fluconasal, an anti fungal medication, to try to ensure head off a serious yeast infection. I literally just learned this information, it will be a couple of days before we'll know more about that.

Lastly, yesterday we were informed that one of Bryce's state mandated newborn screens came back elevated for C5OH. The neonatologist here in NICU said that these are very often false positives because of the many drugs and fluids the NICU babies are on but that the one Bryce tested positive for isn't one of the ones they usually see false positives for. They have asked a metabolic specialist to consult on this since these metabolic disorders are very, very complicated issues. That doctor is out of town this week but ordered a urine sample which we sent off today and said he would visit us next week. We are hoping this is just a false positive but will keep you informed as we learn more.

Neurology came by to check on Bryce again this afternoon. They felt his fontanelles, as they do daily, to check for changes in swelling of this soft spot. They are pleased that the swelling does not seem to be worsening and so are planning to continue watching him until he is healthy enough for the surgery to place a shunt that would drain off the built up cerebral spinal fluid. We are happy that they are happy - even if just for now.

I fully realize that this is a ton of information, I too am overwhelmed by it all. But sometimes a plethora of information can soothe a worried soul. Or at least I find that to be true for myself.

Thank you all again a million times over for your constant prayers and kind words - we love you all and gain strength from you daily.

Tuesday, June 23

Day of Rest

Bryce seems to be taking his well earned day of rest today. He's so peaceful that when I changed his diaper and took his temp. he didn't de-sat at all and no alarms went off. That's pretty amazing for a little guy who has made it quite clear that he does not like to be messed with.

We had rounds a little late today but they were quite positive. Thank God that so far he hasn't given us two bad days in a row, I'm not sure I could handle it.

Caleb and I strongly suspect that Bryce's condition has a lot to do with when his favorite nurses decide to have their days off. Ms Lisa was back last night and Bryce had a smooth transition to today. He was good every day Ms Kirby was with him last week, too. Coincidence? I think not. Flirting already? Who's to say.

Doctors orders, he'll be getting his chest tube out today! I am so grateful for this as I know it must be just about the worst thing to wake up to a tube stuck between two of your ribs into your chest. I wish I could take all of the pain and discomfort for him, I wouldn't think twice about it.

Once that tube is out hopefully he can come off some of the pain and anti-anxiety medication. Of course, I love that they are working so hard to keep him comfortable but it would be nice to see him a little more awake too. If he can be comfortable and awake that would be ideal.

Neuro came by to check on him again this morning, they consulted with our doctors here and decided he's still not well enough for his surgery for the hydrocephalus. But maybe sometime later this week, they will be checking in on him daily.

So many people looking after him, thinking of him and praying for him. Friends of family and family of friends are standing up in churches from the valley to the country to the garden state to ask for prayers for baby Bryce.

They say it takes a village to raise a child, how true that is for Bryce.

Despite our hardships yesterday we felt your warmth, your strength and your compassion. Thank you all for continuing to keep us in your thoughts and prayers.
So far so good, Bryce seems to be resting well and we're down to less than 50% oxygen

Monday, June 22

Thank You

I make it a point to try to remember every night to begin my prayers with thanks. I know, even in the hardest of times, that we have so much to be grateful for.

Today I will thank God for all of you.

For the comments that lift my spirit while bringing tears to my eyes,

For the strangers who take time out of their busy lives to write a kind word,

For all of your prayers most of all.

Thank you.

Pity Party

Some days it's so hard not to ask why. I know I need to be strong for Bryce, and for Caleb too but easier said than done. Bryce has had a hard night and is following up with an equally rough morning. His oxygen needs and ventilator settings have risen dramatically, to the point that there isn't much more that can be done to help him breathe. It's so hard to sit here and watch the monitor alarm because he isn't getting enough oxygen but know that there isn't anything we can do.

I talked with our NNP this morning about my concerns because he had been doing so well yesterday, despite the partially collapsed lung. Unfortunately, sometimes there are no good answers.

She suggested we begin considering steroids because if he continues to worsen this could be fatal for him. That is absolutely the hardest thing I've ever had to hear or type.

Please pardon me my pity party this morning but as I sit here researching the many side effects of steroid use (brain bleeds, Cerebral Palsy, hypertension, hypoglycemia, developmental delays, and the list goes on and on without any concrete evidence linking dosage, birth weight, timing of use, preexisting conditions, etc) I can't help but wonder why.

As I bookmark an American Academy of Pediatrics study I see my bookmarks folder titled, "Nursery." That's what I'm supposed to be doing right now. He's supposed to still be inside my belly, where I can protect him, where I can breathe for him and let him grow to be big and strong all on his own.

Even though I know in my heart of hearts that everything happens for a reason I can't help but feel cheated. All I want is to take him in my arms, to hold him and comfort him, to let him feel that I can make everything all right - to let myself feel that, too.
Bryce's O2 saturation very low despite very, very high ventilator settings - we were asked to begin considering steroids despite their link to CP, etc

Sunday, June 21

Who Doesn't Love Dr. Seuss?!

We had such a nice dinner tonight. Poppa and Sharon took us out for a Father's Day dinner at Austin Land and Cattle. We all had a steak (and my how I missed a good bloody steak!) and enjoyed some time away from the hospital.

Thanks to Bryce's Abuelita for babysitting so we could get out without having to worry too much about what was going on. We know we are so lucky to have parents to watch over him when we need to get away from the hospital, to take us out when we are able to get away and to understand no matter what. Hopefully, in the years to come we can prove to have learned something from them.

Best of all, we (as in Bryce) received a gift for Bryce's room that simply couldn't be more fitting, a limited edition Dr. Seuss print, no. 941 of 2500, from Horton Hears a Who. Unfortunately, you can't make out the text at the bottom from our picture of it but it says, "They've proved they are persons, no matter how small!"

We are proudly displaying it in his room to remind all that enter what a precious little person we have to behold. As if they could forget.

Happy First Father's Day, Caleb

I can't help it, I have to brag - I'm married to one of the best dad's around (it's a tight race between Caleb and my own dad)!

It was just a few weeks ago when Caleb surprised me on Mother's Day - when I was only a mommy to be - with a rocking chair for our front porch. He knew I was excited at the thought of some day rocking our son on our front porch, taking in a little of that Texas sunshine.

Never though, in a million years, did we imagine that on this Father's Day Caleb would actually be a father already. And when I asked Caleb what he wanted for Father's Day he simply replied, "Just my baby, Bryce."

I had gotten him a card but it pales in comparison to the one Bryce and his wonderful nurses did for him this morning:

Of course, it brought me to tears.

I can't help but feel grateful for the wonderful man my son has for a father, for the person that helps me keep it together when I'm overwhelmed by all that has happened. And also the one that holds me and understands when I just have to fall apart a little.

I thank God for a husband that makes me laugh when all I want to do is cry but who can also cry with me when there is nothing else to do.

How lucky is Bryce to have a daddy who wants nothing more than to help him grow strong and teach him the values and morals that he holds so dear.

How lucky are we to get to spend our lives with him.