Saturday, October 31, 2015

Tales from the NICU

Just a disclaimer here. This is not to say a NICU is not a valuable place, that the nurses don't work hard or any such thing. It is just my own view of things. If you don't like it, I really frankly don't care. :)

So this is our fourth time with a child in the NICU. Never a fun experience. This is also our second time with a child in this particular NICU. So not a fun time. You get used to the constant beeping of alarms because they must be ignored. You get used to the sound of babies crying because there are not enough hands around to hold them when they are upset so it seems they only get picked up if something is wrong. You get used to never being told ANYTHING because it seems communication is just not a priority. Doctors who are rarely around, parents kicked out when they are around during rounds. This seems to be a policy exclusive to this NICU. When Robert was in the NICU, they made a policy of getting the parent of the child and bringing them into the conversation during rounds. Trust me, this was very reassuring. But this place, well, they drive me bonkers.

What I have learned over the past few days (and the previous week long stay) is that this place runs entirely on the concept of standard protocols. No real though given to what is best for an individual child or family. This is not at all a good thing. No child may be treated for jaundice unless the bilirubin levels are dangerously high. This means we are dealing with our second child with numbers that are borderline dangerous, causing excessive sleepiness which leads to feeding issues but they refuse to treat it. Two times in a row. This decision led to a longer than needed stay for Seamus and I believe is doing the same thing with Charlotte. They have a standard rule for when a child may try a bottle the first time. When they may move out of on incubator. They also refuse to allow a child to leave with a feeding tube no matter what. This is our big one right now. Charlotte's cleft is fairly severe. I'm not sure she'll be ok without a tube until after the first surgery. Can we see the problem here?  And oh my goodness. I am so tired of being told simply blah, blah, the doctor hasn't said when I ask a freaking question. Call the guy and get an answer or you will quickly have a very angry mother on your hands.

Yes, we are trying to get her transferred to a local hospital. One that is better at working with parents and has a better support network in place for helping families. One that is  20 minute drive rather than the current hour or more drive. But it is all up to insurance approval. The doctors are ok with moving her but the insurance can easily deny it because insurance companies rarely care about what is easiest on families. And TRICARE especially is notorious about denying anything and everything it can. Already fighting with them on denial of genetic screen done after the cleft was discovered. So here we sit, playing the waiting game. The local hospital will send kids home on feeding tubes if needed. It's where she'll have her plastic surgeries. It's where I had planned to deliver if she was truly early like her sibs but I thought 37 weeks was safe enough to be out of the woods. Big mistake on my part. We are hoping to get in contact with her plastic surgeon on Monday and see if he can help us facilitate a transfer.

So please pray with us that the insurance company will see reason and approve a transfer. Otherwise it will be a very long road ahead of us.

Monday, October 19, 2015

Meal Plan

A hopeful meal plan. We have lots of food in the house and lots of things for easy breakfast meals this week. But we are still in recovery mode from a not so friendly stomach bug so who know how things will pan out this week. Seamus was the first one to get sick and still seems to fighting the bug off but the rest of us appear to either be over it or managed to avoid it. Ok, only 4 boys managed to avoid it. Everyone else got very sick. Not a fun weekend. So I guess we will mostly be playing it by ear over the next few days. Maybe.

M: yogurt (B), tator tot casserole (D)
T: cinnamon raisin English muffins (B), spicy chicken soup, cheddar muffins (D)
W: eggs and toast (B), chicken parmesan casserole (D)
T: cereal (B), leftovers (D)
F: eggs and toast (B), fish sticks (D)

Thursday, October 15, 2015

Cleaning Out the Freezer

It is no secret that I have not been too involved in the daily running of the kitchen as of later. This is mostly because my job right now is to relax as much as possible. But it is also my job to train the kids to take over the kitchen tasks so I guess it's a bit of both. But I'd noticed lately that the upstairs freezer was kind of a mess and things were falling out when you opened the door. So today I decided it was time to at least somewhat organize it.

My question for you is what is the strangest thing you have unearthed from your freezer? This is always a somewhat interesting experience. Today I found 6 opened half empty bags of frozen waffles. (They will be breakfast on Saturday.) A bag with 3 pepper slices. Another bag with 2 strawberries in it. A single random banana not in the ziplock bag full of bananas right next to it. A few single popsicles just tossed in there somewhere. I did find a last container of pumpkin butter which reminds me we need to make more when we get pumpkins this year. There were a couple bags of beef bones still for when we are ready for more broth and a bag of suet. I really need to get all 3 of those bags processed already. But the winner was the bag full of nothing but a lump of ice. I'm a wee bit confused. I mean, why would you toss a bag full of just water into the freezer? I know, don't ask such questions. Just accept the weirdness that is your life and move on.

Sunday, October 11, 2015

Meal Plan

M: pancake sausage muffins, fruit (B), cabbage casserole (D)
T: eggs sandwiches (B), cheesy chicken tator tot casserole (D)
W: overnight breakfast casserole (B), alphabet soup, 1 hour rolls (D)
T: oatmeal (B), drunken honey BBQ chicken (D)
F: cereal (B), tuna casserole (D)

Monday, October 5, 2015

Bloggity Bloggity Blog

Been slow around here lately. Still attempting to figure out where to take this little corner of the internet of mine in the next few months. I'm sure there will be occasional updates on the little one when they finally arrive. I had other plans but then my computer died. The one Alan has working for me is incredibly temperamental and just is not handling what I'd like it to so things like adding pictures is proving rather complicated. But computers are a want, not a need so life goes on.

We've been rather busy of late. Still dealing with the orthopedist who know says his plan is to just leave the pin in Liam's arm until it begins to bug him. Then remove it. I've tried to tell him such a theory is rather silly given that it means the possibility of more complications and pretty much guarantees that they pin will need to come out at a most inconvenient time for us. I mean, if it is going to have to come out, why not just remove the darn thing already? Dealt with another child who needed over $2K in dental work. Suddenly. And a dentist who only allowed 30 minute appointments. So we had to come back 5 separate times. And they pretty much refused to use novocaine, instead using laughing gas. The poor kid was high as a kite and starving after every appointment because you can't eat if you are getting laughing gas. (Nevermind bringing in a child on an empty stomach and then having them pretty much always running rather late as well which is just rather annoying for everyone involved.) Then the dentist tried to tell me the kid needed to come in every 3 months for cleanings because "you have insurance and if you don't bring her in, you aren't taking proper care of her." Can you guess who is now looking for a different dentist for the crew?

Katie turned 11. Crazy how quickly that is going. She asked for cheesecake this year. That really means she is getting bigger.

Alan and the older 5 kids ran in a 5K over the weekend. Alan won the race, Sean came in 3rd, Katie took the top price for her category.  The rest of the crew all beat their last times. Everyone had a great time. I'm rather impressed with the progress the kids are making with their running. Makes me wish there was an affordable running club around here for the kids.

So life is plugging along. We're all doing well.

Sunday, October 4, 2015

Tiny Saints

I recently won an on-line raffle and received five Tiny Saints charms. I received St. Joseph, St. Michael the Archangel, Mary the Blessed Mother, Padre Pio, and one additional that one of my kiddos has claimed for their own.These adorable little charms are meant to serve as a daily reminder of our patron saints.

Each package comes with a short summary of the saint's life on the back. Just enough to hep you determine if this saint relates to your life. The clasp allows you to attach the Tiny Saints to zipper pulls, key chains or backpacks. With around 80 different charms to chose from, there is sure to be one perfect for you.

My one criticism of the charms is that they are not as sturdy as I would like. Especially if they might be used by children. Our Padre Pio charm fell off the clasp almost immediately. They are, however, incredibly affordable at only $5 per charm and very adorable.

Meal Plan

M: waffles (B), taco salad (D)
T: egg sandwiches (B), leftovers or tuna casserole (D)
W: oatmeal (B), BBQ chicken, baked squash (D)
T: yogurt (B), chili, cheddar muffins (D)
F: cereal (B), potato soup (D)