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.


  1. Bryce
    AS we spoke this morning keep up the good work. I will see you after work. I love you
    dear grandson.

  2. Katrina,

    A book that y'all might look into getting is called Preemies: The Essential Guide for Parents of Premature Babies. It helps explain many preemie issues in laymen terms for parents, caregivers, etc of a premature baby. We would instantly go to that book once we got information from a doctor regarding Cayden. Don't read it front to back because it will scare the pants off ya - just look up the information related to a specific diagnosis.

    Glad to hear he is still doing okay. I'll pray that it was just one of those things that show up in the blood work and that he doesn't have a metabolic disorder. It's also good news on the swelling.

    Unfortunately, infections are quite common in NICU. I'm glad they caught it before he started showing "symptoms" of being sick so they can get it treated with the appropriate meds. I'll pray for that and great results from the steriods with no lasting long-term effects.

    Keep up the good work Bryce!


  3. Trina,
    We are all thinking of you and hope to see you, Bryce and Caleb soon. I am sending one of my angels, Andrea to see you Bryce. Your mommy always took good care of her, so gow strong so she can help take care of you and your mom and dad. We love you.

    Gene, Lolo Andrea and Tim

  4. Katrina,

    Thank you for the in depth information you put out here. I'm sure it is much easier to do this than repeat it over and over. So many prayers are being said for your little angel. Keep up the good work and know that you and Caleb are doing such a fine job through all of this. Sending you some extra love, hope, and prayers


  5. Katrina,

    Your uncle, Joe Rizo, is a friend of mine and sent me the link to your blog. I have read some of your entries, which brought back many memories for me. I also had a miracle baby. Paul was born at 29 weeks and was considered to have an extremely low birth weight ( 1 pound, 12 ounces) when he was born almost 7 years ago.

    I have also been through the emotional roller coaster that accompanies a preemie fighting for his life in the NICU. I too felt cheated and often asked why?? I remember how hard it was to want to hold him and not be able to, and to long for the rare moments when his eyes would open and he would look at us. I can relate to everything you are saying.

    I want to share with you some advice that I believe was the best I received. I was told to stand over my baby's bed and pray for everything the doctor considered a serious issue starting from the top of his head, working my way down to the tips of his toes. I did this daily.

    Bryce sounds like a fighter, so was Paul. One doctor told me that was the best thing he had going for him.

    And you sound like a very strong person. You hang in there and try to keep your spirits up. It sounds like you have a lot of people praying for you, and I will certainly be praying for you, Bryce, and Caleb.

    Feel free to contact me if you would like to ask me any questions about being a preemie parent. Joe can give you my email address.

    Diana Picazo

  6. What a trooper! He is such a strong boy and so lucky to have strong parents to love and look after him no matter what. I love his new pic of him yawning. He looks so much bigger. We will keep praying for you guys!

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  8. Thank you for the update. I'm sure all of this is more than overwhelming, but you're holding up up well and doing a fantastic job. Take things one day at a time Darlin'. Your little man is so strong. Can you imagine the amount of people that are following Bryce's progress and praying for him daily? Like I said before, Bryce has captured the hearts of many.

    All my love,


  9. Jen Merren HayesWed Jun 24, 10:15:00 PM


    I've been thinking of you, Caleb, and Bryce everyday. I'm praying for you and sending positive thoughts. Love you guys!


  10. Katrina, I know of Bryce from your husbands posts on The Corral. My wife and I are praying for you each day. Not just Bryce but your whole family. Bryce is an amazing little guy. God is watching over him. Can you give the little guy a hand shake for us? Tell him keep going and there is a beautiful wonderful he has to see.

    Adam and Rachele Henderson

  11. Found a quote I wanted to share:
    "Extraordinary people survive under the most terrible circumstances and they become more extraordinary because of it."
    -- Robertson Davies.

    ~ Anonymous but Adoring.


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