Friday, July 3

NICU Cliches...

...It's an emotional roller coaster....
...Two steps forward and one step back....
...We're see-sawing...dancing around...trying to find a fine balance....blah, blah, blah

You know the thing about cliches? People say them over and over again because they fit the situation perfectly and because sometimes it's too hard to find anything better to say.

And so we listen to these words, beginning to hear them before they are said, anticipating their regurgitation like we do the stress of another NICU day each morning when we wake.

These last days have been so much more of the same even though they are each uniquely anxiety ridden that I have struggled for the right words to say. And have therefore settled on no words at all. I'm genuinely sorry as I know so many of you care for us so much and just want to know what is going on.

Fortunately, there is good news to go with the bad. This is the reason I get out of bed in the morning - in the hopes of finding that one cloud with silver lining in this ever-present, tempestuous sky.

Bryce had his surgery a couple of days ago to place the shunt which is meant to help drain the excess cerebral spinal fluid from his ventricles and reduce the swelling in his brain. The days that have followed have been hard. Bryce has struggled to find comfort and properly oxygenate his blood ever since. No one really seems to have a good grasp of why other than he is so little and so early and his little body is so immature.

I posted that he had experienced some seizure activity. These premature babies have premature nerves, brain activity and muscle control and so tend to be quite jerky already (this is what you feel when you say you feel your baby kicking). Because of this it can be quite hard to tell when they are just being jerky and when they might be having a seizure.

As we were about to leave the hospital late last night and were peaking on him, saying our good nights, we noticed Bryce having some rhythmic jerkiness coupled with eyes twitching to the back of his head. His poor little body and head would get so red they were almost purple and he tensed his entire body so hard that he arched his back (while on his tummy) and picked up his whole head.

We immediately alerted his nurse who concurred it wasn't normal Bryce activity. She called the doctor on for the night and he said he would have to see it happen and it would have to last longer than 5 minutes for them to treat him for a seizure. Over the next hour it reoccured several times but never for more than a minute or two and never with the doctor in the room. Eventually he settled down and seemed to be resting again so we left for the evening hoping more than ever before that we were wrong.

His oxygen needs have steadily increased since the surgery and since his weaning doses of the steroids. He is now off the systemic steroids but on a new steroid that is inhaled directly to his lungs to hopefully help them mature more. It will be about a week before we can hope to see any benefits of this new steroid treatment but at least it doesn't come with the side of effects of the other.

This morning, while we were out trying to chase a metabolic geneticist's nurse to take samples of our blood and urine for testing, Bryce was put back on the oscillating ventilator. This is especially hard for us because getting off of that ventilator was the one thing we seemed to have gained from the steroid treatment and now it is gone.

We find comfort in knowing that although Bryce has now been with us for almost an entire month, he is only 28 weeks of gestation and you simply can't ask for him to be doing too much yet. If he needs to be on this ventilator for another month, or more, we will live with that. We just want to take him home... maybe by Christmas? Is that too much to ask? We pray not.

On the up side, Bryce is steadily gaining a little weight. Remarkable considering how many times he's begun getting my milk, then stopped, then gotten it again, increased it and then stopped again. His official birth weight was 690 grams, he is now weighing in at a whopping 920 grams - 908 grams is just at 2 pounds. He's also back on trophic feeds - just to wait and see and hope his little belly will start moving some of them through to his diaper all on its own.

Best of all though is a head ultrasound yesterday revealed that the swelling in Bryce's left ventricle has been significantly reduced by the shunt. His right ventricle is still pretty swollen but also looking better and the neurosurgeon confirmed this morning that he is happy with what he sees.

So two steps forward, one step back...emotional roller coaster...yadda, yadda, much as we want to see improvements in Bryce's overall health and condition he is simply not ready for this harsh world just yet. We will hang on to a hope and a prayer, and a comment or two, that as the weeks continue to pass us by the small steps will accumulate and someday we'll be holding him again, looking back on these tough days as a distant memory.


  1. I love you and I hope everything gets better soon for you guys.

    Also, would you mind rubbing his sweet little cheek with your finger for me. Please tell him I'm proud of him for being so brave and that I love him.

    Love you,


  2. Try to look at the bright side, Bryce is still here and he's fighting and overcoming every obstacle that's been put in his path. He's doubled his birth-weight in just under 4 weeks. That in its-self is great. I can only imagine the pain and heart-ache you suffer while watching your baby experiencing the pain and spasms that he has endured. But, as you can see there is light at the end of this tunnel and slowly but surely Bryce has started his remarkable journey through it so that he can be home with his loving family by Christmas.
    Our hearts and prayers are with you,
    The Pulley's

  3. It's good that he's making progress. Hopefully the new steroids will be what he needs. I'm happy for you both. He's come so far already. I hope you get to bring him home by Christmas. We miss you guys and we're praying for you.

    Jeremy, Lauren & Logan

  4. It's so hard to read what you are going through, so I can only imagine what it feels like to actually be living your life right now. Thank you for sharing your burdens and your joys with us. Take comfort in knowing how many people love and pray for you and Caleb and your sweet little boy. Stay strong and have faith, God loves you and has a plan for each of you. Take care of yourself and eachother and we'll continue to pray for healing for baby Bryce.


  5. I love ya Trina!!
    I wish that I was the worlds smartest doctor, and could make a medicine that just by a drop, could make bryce all better and take all his pain and stress away!!
    I believe in this tiny itty bitty little warrior as well as you & Caleb!!
    I love you all so much!!
    Lots of love & prayers,

  6. Since reading your post earlier today, I've been thinking about what I want to say to you.

    NICU sucks. It drains you day in and day out. You are right, those clouds with silver lining is what keeps you going. I have faith that Bryce will be home before Christmas. He is fighting so hard and has made some significant improvements despite the set backs.

    My son was on the oscillating vent for almost two months. I remember hoping he would go to the tradtional vent so often. He tried a few times before he could hang in and do that. I had to remind myself that he was working as hard as he could and he just needed the vent that was kinder to his little lungs.

    Bryce has had a rough week with surgery and all the reactions that his little body has experienced due to that. Bryce just needs a little break, and I bet he'll be back on the other vent again soon.

    I realize that the words I type are of minimal comfort right now. Please know that my prayers are with y'all and little Bryce.


  7. Praying hard. Been there and you are very right, emotional rollercoaster is only putting the ride simple. You will gain closerness through all this. Your not alone, so don't feel bad for anything. You are in a rough spot and we understand when you are not able to post. God is watching over you all.


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