Here’s Noah with his “Edge” hat on, jamming to a little praise and worship, trying to get the acoustics down, because, seriously, his generation is going to need a band like u2 also!

Noah had quite a day…he had another CT scan and x-ray this morning, all of which came back showing NO abscesses! Everything was normal, except the grandiose amount of gas in his guts. Since we took the NJ-tube out for the pictures, we’ve been giving his little gut a break, and will do so through the weekend, so he’s on PPN which are nutrients via the IV line. So, though it’s quite bad manners, Noah is eating with his hand because that’s where his new IV site is. Since Noah’s blowout yesterday, he was a bit dehydrated and had a few boluses of fluids. Last night the nurses had to do blood draws repeatedly to check all his levels, which are all looking good, but as a result he went from a 33 hematocrit to a 23. The docs said surely it wasn’t because of the blood draws, and then ordered a bunch more tests, so the nurses had to draw 8ml…so yeah, he had his 4th blood transfusion today while his daddy held him. For those who don’t know, when they draw blood they usually “waste” 3ml each draw, so, it adds up. Go A+! Back to the boluses of fluids, well with 4 different antibiotics and flushes after each, Noah’s blood pressure was high and he had big fat juicy feet, so, he had a good dose of lasix, basically a diuretic or water pill, and filled his urine bag with 300ml of fluid. He was retaining just a tad bit of water…He’s stable, no temp, heart rate great, blood pressure back to beautiful, his skin looks fantastic and he’s been opening his eyes more and giving us facial expressions more and more. We are going to do some light therapy and sound frequency therapy hopefully this next week. He continues the acupuncture which is great!

That’s all I got for today…except I learned how to “loom knit” tonight and made Noah a hat, but it’s too small so I’m taking it to the NICU for one of the tiny babies. A dear new friend, the one who just went to Africa, came and introduced me to the “Knifty Knitter”. Now, I know I may be offending some official knitters out there, but I’ve really, really tried with the needles and to no avail, so for now, this works for me and it’s so fast! I’m not claiming to knit, I am claiming that I now can “loom”, so that’s pretty cool! We also went to my sister and her fiance’s Christmas party. Emily was the shortest adult there. She word pink and lots and lots of her dress up pearl jewelry, along with her fancy sheer tutu over her pink skirt for extra bling. Man, I love my kids!



7 Responses

  1. In our NICU, we use 0.2ml of 1u/1ml Heparin flush in our “waste syringe”, the 3ml’s that we draw before labs. We then give that same 3mls of blood back to the babies after we draw the labs. That way we don’t deplete their volume as quickly. You might ask what the blood draw protocal in their NICU is and ask them to follow that.

  2. Noah looks great! I love those pictures of him with the headset!

    I bought a knitting loom for my niece for Christmas. So you think she’ll like it? I thought it seemed really cool.

    Love to you and yours.

  3. Prayer Request:
    I have friends that are pregnant with their first child after many years of trying. The report it is a high risk pregnancy. The baby is a boy and the last ultrasound shows there may be some birth defects. We are believing for creative miracles.
    Now for Noah, what a gorgeous little man. I think about y’all and pray for you often.
    Much love and blessings…..

  4. Noah’s skin looks B E A U T I F U L ! The best I have seen it in recent memory. Something must be working! The U2? All the prayers? The acupuncture? All of the above? Who knows…

    Sounds like Emily was radiant at the Christmas party. How adorable! What beautiful spirit she seems to have.

    Blessings and big hugs to your entire family. We are praying for you here on the East Coast.

  5. Glad to hear the positives about Noah… Emiy, you are a doll! yeah, need to see a picture! Ade, I do remember knitting needles in your hands during one of my visits…working on my first sweater myself! Scarvess are an old trick now. Way to go for the one who hooked you up with the loom! It is fun isn’t it! Haven’t stopped praying! Thanks for keeping us updated!
    Love Steph~

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