Saturday, June 20

A Little Fun

The other day I mentioned that I had some fun news to share and then I was distracted by the overwhelming need to understand all of the things Bryce is going through right now. I'm sorry to have kept the good stuff from you and so, in recognition of Saturday, here it is...

I got to hold my sweet baby on Wednesday afternoon. Unfortunately, it was only ten minutes after my dad left and before Caleb arrived but it was the sweetest ten minutes of my life. There was no skin to skin, as they like to call it around these parts, but it was sweet none the less. I held him in his "snuggly" flat and straight in the air as his nurse changed his bedding. I held him until my arms simply couldn't hold him steady any longer. I thought I might cry because I knew I'd have to put him down but I held it together and smiled for a picture:

As if that wasn't exciting enough, we also did footprints!

We're still trying to figure out who he gets those "big" ol' feet from??!!

Friday, June 19

Note - New Post BELOW

There was a small time issue but there is a new post with lots of details just below the "Good news finally..." tidbit...
Good news finally - brain bleed is not only NOT worse but appears to already be healing, there is some spinal fluid build up but it's common & can be dealt w/

Anxiously Waiting

So we've been anxiously waiting for the ultrasound/brain scan results since it was completed at 8 this morning and we finally spoke to the doctor and he said that the ultrasound showed that Bryce's brain bleed (aka IVH) is NOT worse!

Yea Bryce!

We knew from earlier in the week that hydrocephalus (build up of spinal fluid in the ventricles of the brain) was going to be an issue we'd have to deal with and the scan today was further proof of this. But Dr. George is a leading neonatal neurosurgeon that Dell specifically recruited and built a special building for that houses one of only 18 IMRISneuro fully integrated operating rooms in the country, IMRISneuro is a movable high field MRI that can be displayed for a surgeon as they are working....very high tech! And he's the guy that'll help us take care of Bryce's hydrocephalus. This is a common problem with micro-preemies and the procedures used to resolve it are common practice here.

There are two options to treat the hydrocephalus: a shunt which would take the fluid from his brain and pass it through a permanent tube into another part of his body, usually the stomach, for the body to reabsorb. This is only done on bigger babies though and would be a permanent fixture in Bryce's body. Many people live with these and simply have to have them checked yearly to ensure they continue to function properly. The second option is more of a temporary, wait and see option. They put in a resovoir under his scalp that will hold the fluid and then every so often they go in and remove it with a needle. It sounds awful, I know, but it's relatively common and safe. If after some time the body is able to take over the reabsorption of the spinal fluid again then he might not need to deal with this issue ever again. Like I said, the wait and see option.

The great thing about the hydrocephalus is that it is non-emergent as of right now. Where yours and my heads are fused and therefore cannot tolerated swelling, baby heads are not fused and as such are more flexible and better able to deal with mild swelling fairly reasonably. We expect to visit with Dr. George in the next few days and review our options, which likely will be the resevoir option from what I can tell.

Of course, as with all things micro-preemie there are risks we have to be cognicent of. With brain bleeds as well as with hydrocephalus the major concern is the development of Cerebral Palsy (CP) later in life. There doesn't seem to be a direct correlation between CP severity and certain issues as a baby. Some babies are full term after healthy pregnancies and develop CP, other babies are very premature and have both brain bleeds and hydrocephalus but develop no or mild CP. There is just no way to look into the future and see. We do know that the risk of developing CP is increased first with a brain bleed, then again with its severity, and yet again with the development of hydrocephalus. But that's okay with this mom and dad! We are here for Bryce no matter what happens and we will do everything within our power to give him the best fighting chance he can possibly have!

One last tid bit before I post this anxiously awaited update: Dr. Hodges, our most tell it how it is, let's not sugar coat the truth, doctor mentioned three different times during our conversation, "when Bryce goes home." This is a first for him and I personally couldn't be more happy to hear him so confident that we'll someday be taking this sweet baby home! A little scared? Heck yes! But excited none the less!!

Baby Blessings

Yesterday morning I awoke with a start, knowing my mom would be with Bryce in the wee hours of the morning I quickly called to see how he was. She assured me that he had had a good night and looked great. I took solace in knowing that he was with Ms Lisa, his primary night nurse who knows him so well, and his Abuelita. I showered and dressed but felt a knot in my stomach for some unknown reason. Mother's intuition? Probably not. But I don't know for sure.

As the morning progressed Bryce was doing so well. He had great vitals and each blood gas showed better and better results, including a great decline on his C02 levels. He seemed to be tolerating the new ventilator quite well and everyone was pleased with his progress. I finally agreed to take a break and run some errands while his G2 (Sharon) sat with him during lunch. I returned to serious faces and xray techs.

Cathleen, who shows bad news on her face like a milk mustache, informed me that they thought his PICC line had gotten out of place and so did an xray to check its placement. In doing so they discovered what looked like just a little air outside of his right lung. An immediate follow up xray from the side profile confirmed and she wanted me to know that she was going to give him some pain medication before sticking a needle in his chest to remove the air. An hour later another follow up xray showed even more air - half of his lung's size.

It seems that we had just received a baby blessing. The original PICC line xray revealed the leak in his lung as it had developed. These are usually discovered after a baby's vitals have decreased and they are on the hunt trying to find the culprit. In Bryce's case, his vitals were so good that they almost didn't believe he had pneumothorax.

He's tolerating the tube well and we're just waiting for rounds this morning. They did his head ultrasound early this morning but we haven't received the results yet. Whatever they are we will deal with it, we know that we have to give Bryce every chance we can for him to show us what a strong boy he is. Please keep us in your prayers this morning, we feel a great need for them today.

Thursday, June 18

Cautious Optimism

Just finished up rounds and all in all we're cautiously optimistic. Of course, tomorrow is the weekly brain scan and by far our biggest fear right now. But we have resolved ourselves to worry about tomorrow tomorrow and focus our energy on today. Easier said than done for a new mom.

Bryce is still on his conventional ventilator and his last gas shows they'll start weaning him again. He's been steady all night and this morning at about 40% oxygen with a saturation of about 90. This is good, especially since his last blood gas showed great numbers, including a CO2 level of only 47! He was having some serious trouble with the CO2 yesterday, in the low 70's and Cathleen, baby Bryce's favorite NNP, said she would have to switch him back to the oscillating ventilator if he didn't get it into the 50's or at least very low 60's. Well, by last night he had it down to 64 and then he pretty much just bypassed the 50's. He already likes to show off for the ladies.

We started the trophic feeds the day before yesterday and although at first it seemed he was absorbing them yesterday was a different story. They suctioned much of it out of his tummy yesterday and are concerned he's just not quite ready for food. An xray this morning showed nothing alarming in his bowels but some areas of concern. The doctor is fairly positive that he just needs a little more time and so they decided to hold food for today but try trophic feeds again tomorrow. Good news considering today's doctor is the least half glass full of them all. Of course we respect and understand a doctor's need to err on the side of caution.

Additionally, there is some concern about the amount of sodium in baby Bryce's body. It's not clear if he's getting too much water and so the sodium levels are diluted or if his renal function is poor enough that he's dumping the sodium in his urine. Cathleen ordered a sodium test of his urine but since there is so little they aren't quite sure how long it will be before they have enough urine to test for this. In the meanwhile, they decided to up his sodium as the general concensus is that he's just so little and still developing the process for storing sodium.

It's ironic because Caleb and I just caught a few minutes of t.v. the other night and there was a tid bit about how important sodium is to your body. If you're not up to speed on this you might to a little google search as it's quite interesting. Maybe I can convince Caleb to do a quick post on it since it falls more into his forte then my own.

Otherwise, we are doing well. The doctor reiterated that in the first 48 hours Bryce was here he never expected that we would be doing so well at this point. He's, again, cautious to emphasize that Bryce is not doing exceptionally well but not poorly either - he's about average for his size and gestational age. We'll take that! No questions asked we're the two most ecstatic parents of an average child you will EVER meet!

...Wow, it's still odd to think of us as parents...

All in all, we're pretty content with the way things are going for our little miracle. I can't get my mind far from what the brain scan will show tomorrow but I am constantly reminding myself to let tomorrow be. As a natural born worry wart this goes against all of my instincts but I also know it's very likely my only chance at sanity.

I have some really, really, really exciting new to report also - but it's from yesterday and not near as important as Bryce's health so I'll post it separately sometime today. Thanks to all of our supporters, commenters and prayer warriors ~ you are the air that we breathe.

Wednesday, June 17

Bryce tolerating his food very well but CO2 too high, one last adjustment based on xray before we have to go back to oscillating ventilator

Tuesday, June 16

Big Changes for a Little Guy

Boy oh boy what a day it has been! I almost don't even know where to start.

Apparently Bryce had a hard night but they repositioned and redressed his PICC line last night so I'm not too surprised. He has made himself quite clear about how he feels about being messed with.

Today was my first day to do rounds all by my lonesome and it was hard not having Caleb to ask the questions he inevitably thinks of that don't even occur to me. I did my best and was surprised to learn a lot. First I learned that the doctors and Cathleen (one of the many awesome NNP - neonatal nurse practitioners) had decided today was the day they'd try to switch Bryce to the more traditional ventilator.

ME: ..Wha..Huh..Um..Okay...

THEM: Oh and by the way, we're going to feed him some of your milk today too...

ME: ..wha...OHHH...hmmm...Okay...

THEM: and his PICC line is in his aorta and so we have to undress it again to pull it back about 1.5 cm

ME: ..well, he's not going to like it but it's got to be done

Fast forward only about 45 minutes and our nurse wants to know if I can pump NOW because they want to give him fresh milk for his first feed, and by they way can I also hurry up because they want to get right on his PICC line and it's a sterile procedure so they want to boot me out a.s.a.p.

So, I pump and deliver the goods. Then it's out to the NICU waiting room again to worry for what they say will be a half an hour. I know better but it's still excruciating. Luckily G2 (Sharon) and Uncle Richie stopped by for a visit and took my mind off the waiting.

When we finally got to come back in they had Bryce's incubator all open and the new venitlator on (umm, wow - wasn't expecting to walk into that!). Oh, and by the way - they fed him a half hour before!

Needless to say, I was in a state of shock. We had just gotten used to how things worked around here and now he has a new ventilator with a new screen and a whole new set of numbers and graphs. Plus they turned him so his head is where his feet used to be. It's quieter now though and Bryce is taking it all like a rockstar.

His first blood gas test, which tests 6 different numbers to guage how well his body is oxygenating his blood, was one of his best so far. His NNP said he's amazing and his nurses and RTs (respitory threrapists) suspect he's showing off.

They even weaned his oxygen a little and he's doing even better. His only issue is he likes to take his own breaths in between the ones the machine is helping him take so he doesn't get a chance to quite expel all of the air before taking a new breath in. The machine does not like his style of breathing but I think he's just trying to get used to it.

We won't know how well he's taking his first feeding until at least 6 p.m. but hopefully it's as well as he's taking his new ventillator.

I also got to give him his first bath today - a first for both of us. He didn't like that too well, especially when I wiped his eyes and nose. He crinkled his little face and tried to move it away but it was pretty much the cutest thing I've ever seen. The nurse helped me put some bacitracin on his little spots, change his diaper and his bedding. He's so fresh and so clean now!

It's a good day and we're enjoying it to its fullest! Thank you all for your support - Bryce feels it and is showing you all how much he appreciates it!

Monday, June 15

Mommy's First Diaper Change!

Bryce let me change his diaper for the first time tonight as his own paparazzi (Daddy) stood by jealously watching! He even gave me extra practice by peeing in his new diaper before I could get it closed up so I got to start all over. He's a boy through and through already!

Back to Work

As most of you know, Caleb and I both work for my dad (aka Poppa). We feel so lucky to have him as Bryce's Poppa too but equally lucky to have him as our boss! He's been working his butt off this last week to try to do the job of 3 to 5 people (depending on the day) all by himself and he never lets on how exhausted he must be.

So, Caleb went back to work today - at least he is doing his best. And I'm now officially trying to work from the NICU - thank goodness for laptops and modern technology!

For a family where nurses get to do all the work for our newborn son we've become especially close over the last week and today is a hard day for us. We miss each others support like crazy but know that as the days go by and we conquer more hurdles it will get easier. We're going to take it day by day and we find comfort in knowing that our awesome boss will understand if we have to take an hour or a day off for one of those bad days that are inevitably on their way. But in the meantime, we're hanging in there and Bryce is doing so well!

He seems to be constantly surprising doctors just as he surprised us a week ago. The head of the NICU was doing rounds with his team this morning and he said that he never would have guessed in those first two days that Bryce would be doing so well today. He's still maintaining his blood pressure all by himself, despite the fact that they are constantly taking blood for this test or that. He's also being weaned from his oxygen still - even though he had a hard day of new lines (i.e. lots of pokes and prods) yesterday. His pulse continues to hold steady - even when they rotate him from side to side every few hours in what they like to call his "log roll."

I've been pumping away and I too have surprised some people with just how much milk I'm producing, the lactation consultant said this morning that she's real proud of me. I'd been afraid to ask but the doctor mentioned this morning "trophic" feeding as early as 72 hours after his PDA surgery. Trophic feeding means it has no real nutritional value, rather it's simply to test his gut's ability to process a miniscule amount of food passing through. They'll closely monitor (as they do all things) how much goes in and how much comes out, as well as how well he generally seems to tolerate it. Of course, this will also be his first immunization as he'll get my antibodies. Lastly, the colostrum (first very sticky, thick milk I produced) will work to coat his intestines and close up any small gaps in his stomach that occur naturally in newborns. This will help keep any bugs from getting into his tummy and aid the general function of his bowels. Needless to say, I'm very excited about this possibility coming up in the next day or two!

Also in the next few days we are hoping to see his eyes open up and peak at us! Every day we check them with the nurses to see if they have come unfused and every single day I see small little signs that he's getting there. His eyelids are more defined and even though they haven't opened they've got little creases where they will fold once they do. His blonde eyelashes are longer every day and we simply can't wait to see them bat away at us!

We'll keep you all updated as events unfold but thank you a million times over for all of your support. Your kind comments often make us cry but they are tears of love! We love you all and thank you from the bottom of our hearts for supporting us in this long journey!

Sunday, June 14

Happy 1 week baby Bryce! Love, Mommy and Daddy
Bryce getting a PIC line right now, Mommy getting anxious as it's taking too long for me but I know he's in good hands - both God's and the great nurses here!

Dad's recollection of Bryce's birth

Life started out for Bryce in very rough and less than ideal conditions. I'll take you back to Sunday night (6/7/09) when Katrina and I got home from my mom's house because I was helping her move out of her house. Katrina obviously didn't help out, but on our way home she complained of having pressure in her lower belly and thought it was just gas. We stopped at HEB to check her BP and everything was good. So we get home and she goes to take a shower and tells me to call the midwife because something wasn't right and when I get off the phone with her I here her crying in the other room.

When I get in there, she has her knee's bent a little and leaning on the bed. I tell her to get on the bed but she says she can't because of the pain and in less than a minute, her water broke. This might seem normal but she is only 24 weeks pregnant, which is 16 weeks early. I am freaking out at this point and she wants to go to the bathroom so we go in there and I call the midwife back. In less than a minute she tells me "something came out" and stands up all the way and I see Bryce in the toilet. I am about to pass out at this point but I pick him up and am able to hold him with one hand, hang up on the midwife and dial 911 with the other. The operator gives me instructions to give him chest compressions and mouth to mouth until EMS arrives. I first gave him mouth to mouth, covering his mouth and nose with my mouth and giving him two puffs of air then Katrina followed with thirty chest compressions. We did this until EMS arrived about ten minutes later. I had to shove Lexi (our nosy cat) out of the way a couple of times because she always has to get in everyone's business. They took over from there and I was in panic mode at this point with so many people around. I wanted to help out but there was nothing for me to do.

Once they wheeled Katrina out, I gathered up some cloths and officer J. Miller from CPPD took me to the hospital. Bryce and Katrina went to Cedar Park regional medical where he stayed for a few hours until they sent him to Dell Children's Medical Center. Katrina and I stayed until her discharge around 9 am. That's pretty much it, most everything else as far as updates are on the blog.


Good Day, Good News

Well Bryce seems to be recovering from surgery better than expected. All of the doctors and his wonderful heart surgeon, Dr. Fox, warned us that he would need more medication, more oxygen and likely higher ventilator settings for the first couple of days. Only then should we hope for improvements to begin.

Just as with all things Bryce - he has surprised everyone.

He was pretty sleepy all day after surgery yesterday but it calmed me to see him take a break from squirming and pulling lines out of his mouth to just rest.

They have completely taken him off of all of his blood pressure medicine (Dopamine and Dobutamine) and he is sustaining his own blood pressure beautifully. His pulse has been steady right in the good zone all day yesterday and today. Not to mention, they are continuing to slowly ween his ventilator and oxygen settings even still! He is tolerating his lipids (fats) really well too according to his Triglycerides so they have been able to continue with those which he very much needs. They started him on a new antibiotic yesterday that seems to have improved his white blood count - even though none of the cultures have come back positive they are always trying to stay ahead of the ball here. In the same vein, they started an antifungal today because those take awhile to grow and show results; since his skin is so sensitive right now it's a better safe than sorry scenario.

Finally, he has two lines in his belly button/umbilical cord site that are only good for 7-10 days so today they thought he was doing well enough to try to replace one of them. They chose to start with the arterial line and although we had to step out (or otherwise risk me, Caleb or Grandma Sharon tackling them in the midst of this tough procedure) his NNP (neonatal nurse practioner/angel) said he handled it very well. They decided to wait until tomorrow to replace the second line with a PIC (PCLV) line, which will be a fairly permanent line done in his room but in a sterile procedure, i.e. caps, gowns and sterile cloths abound.

Sorry if this post is a little scatter brained but Traci (aka SAM) reminded me that there were likely a ton of people waiting patiently for an update. Thank you all for your prayers and well wishes during his surgery yesterday as well as everyday ~ we couldn't do this without YOU!

Much love and appreciation!