NICU Day 17: Feeling Discouraged

Every few days or so, I feel down in the dumps. There’s really no rhyme or reason why this happens, no news of doom and gloom or a backwards slide in progress – it just happens. Today is one of those days.

We had a good day in the NICU even though Sol was also wearing his grumpy pants. Here’s the report:
– Sol continues to be stable with the wean off of Phenobarb. They lowered his dose to 1 mg/kg yesterday and, as long as everything remains status quo, they will take him off of it completely in 2 days.
– No change in respiratory levels overnight. He’s generally in the 87 – 97% range, and the doctor says that when his levels are 95% and up when he’s in a deep sleep, they will wean him off of oxygen once again.
– We got a clean bill of health for his vision exam. Woo hoo!

Michelle was out sick today, so we met with Hilary, who will be doing his outpatient OT. She gave us some helpful hints and exercises to try when we are visiting with Sol, and said he has great movement and alertness.

For feeding, we met with Jeanette who works on Tuesdays. She was pleased by his suck and swallow reflexes and was able to give him 2ml of milk by mouth. He is still having trouble coordinating the swallow and breathe part of feeding, so we are practicing with small increments of milk. While we think the side effects of the Phenobarb may still be hindering his coordination, I think this slow progress may have fueled my sense of discouragement today. I know this is only the third time he’s been fed by mouth since we got to Georgetown, but it feels like it’s taking Sol much longer to catch on to the feeding lesson. (I know, I need to be patient!) Melissa will be working with us tomorrow on getting Sol more practice, so hopefully we’ll see some more progress then.

To compensate for my less than positive mood today, I present you with a photo of Sol doing an impersonation of The Grinch:
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Chatting with Hilary:
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And hanging with Dad:
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3 thoughts on “NICU Day 17: Feeling Discouraged

  1. Serena Crumley says:

    Bless your heart. Our family is pulling for all of you and continue to pray for the little fellow. Know you must be exasperated with so much and so little happening…..Love & hugs to each of you.

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  2. Kathleen Griffith says:

    Cami, I am sorry you are having a down day. But all we see is improvement. We are all encouraged with Sol’s progress. Everyone in my office are always asking me about Sol. You have so many people praying and routing for our little “Sol”. We love you all and we are praying, praying praying!!! Love Kathleen and Wade

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