Tuesday, November 24, 2015

4 Weeks

She's slowly getting big.

Saturday, November 14, 2015

She is Home

The baby is finally home. Her siblings are enjoying spoiling her. I'd forgotten how much fun it is to have toddlers and babies. Toddlers seem to have an instinctive love for babies. Totally awesome to see. Now to just find a bed for the baby. Yup, we failed in our planning and still need to get a bed for the poor girl. We are a work in progress.

I must say this last visit at the NICU baffled me. We got to the point where even the nurses were saying her forward progress was completely being hindered by the policies in the NICU and simply being there.  The charge nurse insists that every single nurse has been properly trained and knows how to feed her but the nurses tell us something else and we see that they have no clue. The last 3 nurses she had while there had no clue how to even put the bottle together.  The directions the occupations therapist had written out for how to feed her (which must be followed by the nurses) absolutely did not work for how Charlotte actually ate. It was a huge waste of our time.

And yet, we were constantly told that she had to be there. Until they got more super tiny babies than they were expecting. Then it was a suddenly change and we were kicked out. Because they needed her bed.  Trust me when I say I am oh so very happy because just a few hours earlier we had been told to expect to be stuck there for at least another 24 hours. Just seems to me that if they could be so comfortable kicking her out so quickly, she likely did not really need to be there by that point. Sigh. Since this is the second time we have had a very similar experience with the same NICU, it can safely be said that if we are blessed with another child while living here, we will not deliver at this hospital. I also did not enjoy hearing the anesthesiologist explaining to his resident how he was messing up while putting in the spinal. Seriously, some things should not be said in hearing of the patient. And to have the nurse try to distract me by asking if we were planning more kids right at that point. Um, lady, someone is sticking a needle in my back. Can we have this conversation at a later point? It was fun. And yet Charlotte is worth it.

Yes, I am thankful for NICU's for those children who truly need them. My heart breaks for all of the parents of the super micro preemies I saw sharing a room with Charlotte. They got a 23 weeker in those last few hours we were there. I just wish this particular NICU was more willing to view each child as an individual, kept the parents truly involved, and remembered the importance of communication. I also wish they truly encouraged breast feeding with the new moms who were interested but that is an entirely different story. The number of new moms I heard tell their nurses they were no longer going to try to nurse was sad because you could just hear the heart break in their voices.

Anyway, we are home. I was greeted by a broken fridge and another huge pile of medical bills when I arrived home. We have managed to fist he brakes in the van and get new license plates for the truck after one of those fell off. And we are blessed with a full pantry and lots of food for the next week or so from friends dropping meals off. Maybe after another week or so I will feel like tackling putting the house back into some semblance of an order but for now, that can wait while we all enjoy the new baby. And make the zillion and one appointments she will need with various doctors over the next few months. Regular doctor, plastic surgeon, and a hearing specialist (because she failed her hearing screening which is normal for kids with cleft palates) just for starters. I'm really not looking forward to it but I new this first year would be kind of crazy insane.

Wednesday, November 4, 2015

Week 2

No pictures. I know. That seems mean. But Alan has them all. Maybe soon.

And I know I am supposed to be singing the praises of the NICU and the staff and how amazing they are and such things but I just cannot. Yes, I get that their job is challenging. But I am truly getting frustrated with how they are handling Charlotte. (And we won't even mention the crappy dangerous car seat advice they were giving out today. It got really bad so I had to jump in and correct a few things. Like never ever ever put your baby in a snow suit and then buckle them into their car seat. Never.)

Anyway, we are working on getting her off the feeding tube so she can come home. If we are there to feed her, she takes almost her entire feeding (and sometimes lately the entire thing) from her bottle. If the nurses feed her, she take less than half. Often way less than half. It appears that they just are not taking the time she needs to feed her and since that is their job, it frustrates me. Not to mention the times she is awake and rooting around and hungry and fussing but not allowed to eat because it is not her scheduled feeding time. So then when her scheduled time rolls around, she has worn herself out fussing and is too tired to eat everything. Seriously, this is annoying. I understand why NICU's rely on schedules but there are times when a baby must be fed according to their own cues.

Anyway, it has been a long week so far. Hard on the younger children who have had their lives turned upside down. Hard on the older boys who are being asked to take on so much more work at home, and hard on us as we fight to get the best care for Charlotte but find ourselves unable to do so. Seriously frustrating.

Hopefully things will improve over the next few days. I hope.

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)