We've been lucky for mostly ups in this NICU journey. Andrew continues to do pretty well - although he's had a few bumps. Just when we begin to feel somewhat comfortable and happy about his progress he throws one at us. He had another fairly large spell on Sunday night (needed to be bagged). They can't put a finger on why they are happening, the good news is that there is no signs of infection, his b/w and lungs look good, and he seems fine afterwards. The bad news is that they are still happening. At least they have been less frequent (only one this week). DOWN.
He's also not been gaining weight at the pace the doctors would like (approx 30 gms/day). In fact, he's lost weight the past few days, and quite a bit last night (100 gms). I feel like we just lost a week in weight gain. :-( Like the spells, they don't know why (no signs of infection or stomach issues, except he has been constipated.) When we know that nutrition and weight gain are really his pathway home, these setbacks are so disheartening. They want to move him to an open crib, but are hesitant because of his weight. He's keeping his temp regulated with swaddling, but they want him to be about 4 pounds before making the switch. DOWN.
Finally, Andrew had his eye exam yesterday. While he did well during the actual exam, his ROP issue may be worsening a bit. He is still at level 2, but the nurse mentioned that the opthamologist said it looks like it may be progressing. We are supposed to talk to them tomorrow, and he will have a follow up again next week. We are hoping he doesn't need the laser surgery. DOWN.
All this just leads to a big BLAH for mom and dad. We know things could be worse. We hope it doesn't get worse. We hope a big UP is just around the corner.
[The good news is that he's been a cute, cuddly baby the past few days and seems to love his snuggles with mom and dad. Enjoy the pics, and pray for UP!]
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| Snug as a Bug (Mom's been calling him Bug-a-boo lately!) |
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| What?!?! |
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Why do they keep swaddling my arms? I can't reach my feeding tube! |
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| Much better! So comfy! |
6 comments:
Praying Up! Up! Up! Hang in there. He sure is adorable! -JLZ
Praying for lots of ups to come your way. Love the swaddle pic.
Is he doing well with his feeds? Maybe he's using all his energy for that and taking a break from the other stuff. Keeping you in my thoughts (when I'm not writing my self-assessment and someone else's competency assessment and doing my TOL refresher, etc. ... see all the fun you're missing out on?). And, since you can delete this comment if it's not what you want posted on your blog, I feel I must tell you that the "word verification" I've been given is, no joke, "biatchi." Is that the adjective form of "biatch"? Is that a hint to me?
From one micropreemie mama to another -- hugs! (And for a sneak peek at what your life will be like in 4 years, check out my latest blog post at copywrights.blogspot.com)
Courtney
Up, up and away! Sending lots of thoughts and prayers your way! :)
Praying for you all every day! Continue to fill your thoughts with faith and hope on this journey.
Andrew is such a handsome cutie!
1 Peter 5: 6-7 "So be humble under God's powerful hand. Then he will lift you up when the right time comes. Give all your worries to him, because he cares for you."
Psalm 30: 4-5 "Sing praises to the Lord, you who belong to him. Praise his holy name. His anger lasts only a moment. But his kindness lasts for a lifetime. Crying may last for a night. But joy comes in the morning."
I'm praying UP every day for Andrew. He is such a little fighter and soooo cute!!
~ Alisha (MrsVoz)
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