Micah's cardiologist came by again today. She had expected to see his heart rate drop with the meds, but it hasn't yet. And his respritory rate has gone up (not so good) and she can now hear his heart murmer (which is supposedly a good thing, but I don't understand that part). But Micah's weight has gone up today (7lbs 9oz) and he's taken a bit more from the bottle. If he has a stellar night tonight, we might be able to avoid the g-tube, but it appears we're headed back to Milwaukee. The neonatologist is going to contact the surgical team tomorrow to see where they could fit Micah in the schedule. If we're definitely headed to the g-tube, I'd just assume get it scheduled sooner rather than later. But I think his cardiologist wants to get him regulated on these meds first. Oh, and he's up to 24 calorie formula being added to the breastmilk. They don't want to tax his system by increasing the volume so they're fortifying the volume he currently gets. The hospital is out of the 24cal. Wonder how hard it's going to be for us to find it. And there's a possibility they'll increase that to 27cal. Yikes.
On a more pleasant note, Micah had a good snuggle with Granddad today:
And Oma was there on Sunday:
6 comments:
Jennie, I'm so glad to hear Micah's weight is going in the right direction and that he had a good eating session! This brings back memories. Erin too had the added calories into her breastmilk. We started with the 24 cal and made it all the way to the 30 cal. Once we got the ng we went back to the 24 cal until surgery. Another thought...I seem to remember the cadiologist suggesting heart surgery for between 4-6 months with Micah. If she thinks it may need to be closer to the 4 month mark, I wonder what your thoughts are on just sticking with the ng? Erin was on the ng from July until the end of Sept. It wasn't what we wanted, but we could manage that at home just fine. It's just a thought that came to me when I heard that Micah had a good feeding! If he's close to "getting it" perhaps you could avoid the g-tube? I only mention this based on my personal experience, because it worked for us. I'm sure the cardiology staff there would know best. Oh, and if Michelle is your card nurse, she can give you the formula to make your own 24 cal breastmilk....it is very hard to find the premixed stuff! We made our own.
God bless, Kris
Hi Jennie,
I am not sure what brand of formula Theda uses. Lil was on Enfamil b/c she did not tolerate Similac very well. We were able to get Enfamil Enfacare (the 24 cal version of Enfamil) at Copps in Neenah. Thought I would mention this in case you guys are looking for it.
Hang in there. Micah is doing well, especially considering he has already been through a major surgery and is dealing with a heart defect. He is a good size. We were amazed by the changes in Lil after her heart surgery. (For example, her PT said she had extremely low tone before surgery, even for a child w/ DS. Now, she has good tone for a child with DS.) You just have to get to and through the surgery, and I bet you will see a much stronger boy. Take care. We are thinking of you guys.
Love the pics of your little guy!! Keeping you guys in our thoughts and prayers! Glad to see you are able to hold him as well. Good luck!
~Beth~
Jennie and Mark,
I am sorry that I haven't made time to post earlier. It sounds like y'all are doing a wonderful job handling a very tough and tiring situation. Micah is just precious!
As I have told you before, I am very good at handing out unsolicited advice, so you can take it or leave it, but...we have liked the g-tube better than the NG. It is much less likely for these boys to pull out as it can be hidden under clothing. Bennett has pulled out his g-tube once, but pulled out the NG many times. I agree that, if at all possible, it would be great to avoid it. However, if he needs it, we haven't found it to be all bad.
As for the increased calories, I think that this is a great way to sneak a little extra weight on these boys so that they can tolerate surgery better. We have been all over the calorie spectrum, but are currently on 24 cal/oz, which I make at home.
I do hope and pray that y'all are able to bring that precious angel home soon. I often found comfort in the constant monitoring at the hospital, but it doesn't compare to sleeping at home and having that sweet boy just down the hall. Please let us know if there is anything that we can do from down here! Thanks for keeping us updated through this wonderful website.
Valerie and Judd
Your request for a "positive sandwich" was, in fact, itself a "positive sandwich". Fred Talbot would be proud.
For those of you that are not familiar with the positive sandwich, it is a communication device that can be used when communicating a critique. First you give a positive statement, like "though I appreciate your concern for Micah", followed by a critique, "really don't appreciate you passing judgment and suggesting that I might have caused his setback... and in the future, when criticizing someone, you might consider using a positive sandwich". Finally, the critique is softened by a positive statement, "... but thanks for commenting". Excellent job.
Okay, which one of you Vandy geeks explained the positive sandwich? :-)
Kris - Dr. S has mentioned the 27cal formula, but we haven't had to go there yet. I did ask the neonatologist about going home on the ng, but he said they would only do that for short-term (less than a month). And it might be annoying him anyway. Thanks for all the info!
Christine - So great meeting you. Theda does use Enfamil. I'm looking forward to seeing Micah perk up after his heart surgery.
Beth - Thanks for reading, posting, and praying.
Valerie - Praying for your little Bennett and wish we could meet him (and we certainly wish we were in the South, given our sub-zero temps up here!).
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