Saturday, July 11

Big Steps

funny pictures of cats with captions

Bryce had an exceptionally good day yesterday followed by an excellent night and is well on his way to another great day! We couldn't be happier with how well he is doing and like Tiare, his nurse last night, said - who ever is praying, how ever they are praying, make sure they don't stop!

More good news is that they have now stopped all antibiotics as all cultures have come back negative. This is great news because it means that Bryce's little kidneys can get a break from processing all of that. His blood pressures are still good, they are weaning his nitric oxide, he's oxygen is still low and he's back to the active little guy we remember from a week ago.

We'll probably have to go back to neuro for another shunt to be placed in the coming week to ten days but we'll cross that bridge when we get to it. For now we're content to enjoy these good days and restock our hope for the days ahead.

We'll be sure to keep you posted as things continue throughout the day and this weekend - thanks for thinking of us continually, praying for us daily and loving us always!

Friday, July 10

Thank God!

Our little Bryce has really turned things around in the last 24 hours! He's got the smartest of doctors a little worried because they simply don't understand what did it for him. We know though, we know that Bryce's little body felt all of the love and prayers going out for him and he used them as strength for his hard fight.

Just to give you an idea of what a change he has made:
Bryce is now on 25% oxygen, room air is 21% and two days ago he was on 100% for most of 48 hours. His blood pressure is now a mean of 38, it was only 20 the night before last and needs to be at least his gestational age, which is now 28 weeks. He is not on anymore dopamine or dobutamine, the two blood pressure medications he's been on and off of since birth. He is on the steroid hydrocortisone which was started the night before last as a last ditch effort to get his blood pressure up. Looks like it worked. The crazy thing is that this steroid is for blood pressure, it shouldn't really help his lungs. And by far his biggest trial on a day to day basis is his lungs' immaturity and hence their sickness. But he's oxygenating his blood amazingly well now too! His blood gas tests keep coming back with proper PH balances and low level CO2's - pretty much stumping everyone as to why! Lastly, his urine output is now officially back to normal!

We are so proud of our little man and now just waiting for rounds to hear the plan for the day. I'm secretly hoping they'll mention starting feeds again because I just know if he can get some of that good milk I work so hard on making for him he'll start to gain some weight and before we know it he'll be smiling at us!

Thursday, July 9

Urine output now up and blood pressure doing much better!! Oxygen at only 36% - room air is 21%!!

Another Day, Another Bumpy Start

Bryce had a bumpy start to yesterday but a truly awesome afternoon. Unfortunately, after we settled him back in last night and headed back to the RM house for some rest he did not continue to do so well. He stopped urinating again and although his oxygenation of his lungs was still dramatically better than in the several days past his CO2 levels began to rise and he became very acidic.

You know it's not good when the nurse practitioner calls you at 3:30 a.m. (an hour an a half after I had finally gone to sleep). Caleb called back after a blood gas test to follow up at 4:15 a.m. and received more gloomy results. Then at 4:45 a.m. the Dr. called me to say that things were still not looking up and that he had ordered hydrocortisone (a steroid) to try to get things moving in a more positive direction. The good news is that this demonstrates what awesome and capable hands Bryce is in throughout the night. It doesn't warrant much sleep for a worried mom and dad but it offers the ability to worry a little less.

The trend continues this morning. Bryce's oxygenation is great, a real turn around. But his kidneys appear to truly be showing the effect of weeks of mulitple antibiotics, all broken down in the kidneys. He still hasn't really had any urine output but we have finally gotten his blood pressure back up to where we like it, quite likely as a result of the hydrocortisone kicking in.

So right now Bryce is having an ultrasound of his heart to double check there isn't something there causing his trending lower blood pressures over the last 12 to 24 hours. While at it they're also going to ultrasound his kidneys to double check that there isn't some un thought of reason that they have stopped working. Later today Bryce will have a follow up head ultrasound to ensure that his shunt is still doing it's job of diverting his excess cerebral spinal fluid. As well as to make sure there are no new brain bleeds or swelling of the ventricles.

Our main concern today will certainly be keeping his blood pressures up and getting some wet diapers. Kathleen, our very favorite NNP (neonatal nurse practioner), is back for just one day. And if the sun shines on us just right maybe she can place a new arterial line in Bryce so that they can read constant blood pressures and draw blood for blood gas tests without having to stick his poor little, swollen feet ten times a day.

It looks like God has answered our prayers to help Bryce oxygenate his blood so now we just have to ask for another favor - or two.

God, please help Bryce's little kidneys heal and do their work. They have been working so hard for so long now and they just need a little help. And God? Can we also ask you to heal Bryce's lungs so that he can blow off that excess CO2, we'd really appreciate this so he isn't so sleepy and can open his eyes and look around for us again soon. Thank you Lord for all that you do. Amen.

You Are Amazing

These past days have been the hardest and most trying of my life. At times I am able to suck it up and crack a joke or smile. At other times it seems as if my world is literally crashing down on top of me.

But the one thing that has given me more comfort than I ever could have imagined is this blog. The cathartic release is unparalleled but the response is truly what gets me from day to day, and sometimes from hour to hour.

I've received emails, messages and comments from old friends, new friends and friends of friends. This intricate web of encouraging words and prayers envelops our small, fragile family and gives us warmth in the coldest of times.

Thank you, thank you in more ways than I can say or even imagine. Thank you for continuing to reach out to us when we don't have the time or the strength to get right back to you. Thank you for praying for us, complete strangers or family or friends, day after day, often throughout your day.

Your kindness and generosity proves that this world which can be so harsh has many wonderful people and great things to offer our son. It is with all of our love and prayer that he will grow to see this.

All our love,
The Moline Family

Me holding Bryce today, 7/8/09 ... 5 hours 5 minutes ...
I now hold the holding record! Caleb's turn to challenge me next!

Wednesday, July 8

Bryce hasn't had any of the paralytic medicine since 6 am (wore off hours ago), still on 70% oxygen, not low but better, let's hope he's turning it around!!!!!!

The Hardest Things To Think About

As I've said in earlier posts, these last few days have been very hard. Bryce is needing continually more and more lung support and the doctors are running out of options to help him sufficiently oxygenate his lungs. Additionally, his renal function over the last couple of days has been concerning and we simply aren't sure why. It's possible that all of the medications he has to run through his system are just too much and spreading their doses out may help. It's also possible that his poor little body is just getting tired.

The doctor today has expressed his deep concern for Bryce. As much hope as we have for Bryce we have been forced in these last days to consider all possible outcomes for him. This is absolutely the hardest thing we have ever been through and it seems so unjust, so unfair that as much as I fight it anger fills me when I think I might have to live my life without Bryce in it.

Just moments ago the nurse practitioner came in to speak with me about Bryce and his future. The doctors, nurses and nurse practitioners here are wonderful people, better than we could ever have asked for. But they have the awful job of approaching us in all situations, good and bad.

She wanted to talk to me about two things.

The first is the possibility of another, much stronger and longer, dose of steroids. The vent settings are maxed out and the nitric oxide has had little to no effect. He's been given a paralytic medicine over the last two days to paralyze his little body from fighting the ventilator. But this medicine also keeps him from being able to move at all, so we have no idea if he is in pain or uncomfortable or even aware that we are here. His xrays now show haze over both of his lungs and a collapsed right upper lobe in addition to the left, which has never opened back up for more than six hours. The plan is to possibly try putting Bryce back on the traditional ventilator to see if this helps, though there are many risks involved with that. He could develop another pneumothorax, whole in his lung, or need higher pressures than they are able to give with that ventilator. If that doesn't work than the only option left to try to save Bryce is another dose of steroids. Of course, the steroids have their own full set of evils that we've talked about before. Only now the dose would be higher and last longer - and have greater chances of long term developmental effects on Bryce. How are parents to make decisions like these?

Secondly, the nurse practioner wanted to talk to me about a DNR. They feel it's time that we start thinking about what we want thme to do if Bryce "codes, or if his little body tells us he has had enough." Her words. Do we want them to do chest compressions and go to more miraculous lengths to save him or do we let him go? I can't even believe that I have to type this, I can't even believe that we have to think about this! Why can't we just have our little boy be healthy? Why can't we just take him home with us to love him him and care for him and watch him grow into the amazing little person we see when we look into his eyes? We would do anything. I would trade my life for his if I could. I would take all of his pain and illness into my own body with no compaint.

But those are not the cards that we have been dealt. God has given us this and we will do our best with it. We will continue to pray for strength and guidance, to ask for prayers from all of you and to try to find hope in each new day. Today we hope that Bryce will respond to the conventional ventilator better than the doctors expect and won't need us to decide if another round of steroids is the right thing to do.

Tuesday, July 7

Happy One Month Birthday & Baptism Bryce!

I'm so sorry I haven't updated the blog in a little while. These past days have been some of the hardest since we got here. And since they're all in a string they're that much harder.

Good news, though! Today our baby Bryce is one whole month old! It's hard to believe we've been here that long, but also hard to believe it's only been that long.

We continue to battle the immaturity of his lungs on a daily basis but we've made other accomplishments along the way. Bryce no longer has a PDA, and he now has a shunt to drain off excess cerebral spinal fluid from his brain, he's tolerating trophic feeds and gaining weight almost every day, his skin is like brand new, and boy parts too, his hair is longer and eyes are brighter every day. We have both now had the joy of holding him against our skin and smelling his unique Bryce smell. We have so many things to be grateful for on this day. We will try hard to hang on to all of these things in the midst of dealing with the daily reminders that nothing is certain and we have a long way yet to go.

Thanks to Dale, the chaplain here, for baptizing Bryce today. And thanks to our family for making the trip to join in the ceremony and celebration. It was a very special moment for Bryce as well as for us.

In celebration of Bryce's big day I thought I'd share some pictures with everyone.

G2 took this one today of me and Caleb trying to soothe Bryce a little:

And here's Bryce up close this morning, you can see both his body and his hair continue to grow:
And sorry this one is sideways but it's one of my favorites. It's from 6/30 of Caleb holding Bryce skin to fur, eh uh umm, I mean skin to skin...he hee...aren't they sweet together?! I'm pretty sure this is the longest Caleb has ever been still (you CANNOT move when holding because of all of the IVs and breathing tubes, etc) - he holds the current record for length of time holding Bryce. He beat my 2 1/2 hours by almost 30 minutes! I hope to challenge him soon.
Last, but not least, here is our baptism group from earlier this afternoon. From left to right that's Uncle Richie and Aunt Christi, Caleb's mom "MeeMaw", Caleb and I, my dad "Poppa" and Sharon "G2", my mom "Abuelita" and David Smith, Caleb's youth pastor and long time friend. And in front, crouching by the ventilator is our chaplain Dale, the master of ceremonies. Thanks guys for taking time out of our busy days to come celebrate Bryce with us!
Oh, and can't forget the hanging safari animals topping us all off! Those were a surprise from Bryce's primary night nurse, Ms Lisa. Bryce just loves Ms Lisa and it's so obvious why! Okay, okay, we love Ms Lisa too! She decorated Bryce's whole room with blow up safari animals and safari rubber duckies, she even "helped" Bryce make a sign for us saying how much he loves us!

More coming soon...thanks for checking in with us!