Busy lady

It's never a dull moment with Anabelle! 

Last week her GI called, and said that if I am not comfortable with her pain level to bring her in, again. To the hospital because it was Friday after 5:00 PM, and that's how our life works. So she had been screaming all day, and then I get home from work and no change. Even with meds. 

I took her in. We got her comfortable and admitted. I meet with the attending doc. I should mention we are VERY familiar with all of the doctors, and most nurses. Probably my least favorite thing. So he comes in and we discuss. He noted she was boarderline for an ear infection, but just not sure. So he wanted a complete work up. yay.... I explain how tough it is to get an IV and blood, and how we're getting a broviac cause of this very reason. I explain how last time they stuck her 14+ times, and still nada. He puts a cap on the times they can stick her, 3. Love it!! 

So two nurses come in to do the IV. These are new nurses I have never seen, which is weird... I explain how hard it is. I explain how I'd like IV therapy or a NICU nurse.. They reassure me that they are pros and can get it. I tell them about the 3 sticks max.... 

Two sticks in, they tell me I'm right, and mama knows best. DUH!
NICU nurses come down. Another 4 sticks. They got an IV twice, but both turned. Meaning they no longer went into the vein, but rather just into her arms.. filling it with meds and fluids. Painful.. 

So no IV. Then lab comes. They did another few sticks and got enough only for 1 of the 4 tests. Great. 

We saw her GI the next morning. Of course Anabelle was all smiles. Making me look insane. Then her GI remembered that in the hospital they blend the formula. Literally, just put the formula and water into a blender and wa-lah! She said that it takes out a lot of the gas.. still seems like she's crazy, but I guess it worked, for a few days. Anabelle came home on Sunday. 
She did pretty ok during the week, only needing Tylenol w/ codeine once a day.. however, Thursday she started getting back to herself. And now, Friday, I called her GI again. 

She also meet with surgery for a follow up. We told him what's been going on. He said that she is too small for a port, and she will get a broviac. But I guess there is such thing as a low profile broviac... (I can't remember if I have already said this..sorry!)

We meet with pulmonology this week. He said that he's happy with how she's progressed. Cancelled a med, added another one. Important news. He said that he doesn't want to repeat her swallow study for at least six months. And he said that'd be early. With that said, she will have a feeding tube, be it J or G, or GJ, for at least another year. In order to get her tube out she has to 
1. Do a repeat swallow study and PASS, showing no aspirating or iffy like behavior. 
2. Eat on her own without touching her tube AND thrive for another solid 6 months. 

That was a little upsetting to hear, only because her GI ok'd a repeat swallow study for as soon as it could be approved.. but it's ok. What ever is best for Anabanana. 

OHH and she is 11 lbs now :D Such a chunky monkey! Her hair has gotten so out of control too.. It reaches her eyes now! I put together some pictures and sent them to a doc for his opinion, so they have some funny words on the, but look how far she's come! 

See what I mean about the hair! 

(yawning because she is bored with me...)

 Her knees BENDING

 Ana laying out :)

As far as family news::: I just got a promotion/new position at work! It will be awesome. I think I will really enjoy the work, and am super super super excited to start!! 
Amelia and Allison are doing awesome. Amelia is really loving school. We have our first parent teacher conference next week! But there is this little girl who I can't stand. She tells Amelia that her shoes are not cute, or her hair or whatever.. then Amelia comes back and says she needs to wear different shoes, or she can't wear braids because this little girl said they are ugly.. UGH. I never thought I could be angry with a 4 year old!! Don't worry, I alerted her teacher to it and she has gotten better, I think.. 
I really don't think Ana and all of her needed attention has affected them to much. People always ask how they are doing with everything. I honestly haven't seen a huge drastic change in them. I feared jealous, outbursts, and just plain hell when we took Ana home from the NICU. But nada. I gotta say, our kids are pretty dang awesome. 

With love, 

The Polks

Testing and guessing

Anabelle has been a busy busy little lady. 


Let's see. Medical stuff... 


She's finally back in serial casting.. It's been a while since her on and off again hospital stays and trips. She has seen Endrocrinology, a Pulmonology team (a nurse, dietitian, social worker, etc.), her Rehabilitation coordinator, and GI. 

Endo wants blood. Pulmonology wants follow ups. Rehab wants therapy. GI wants the most. 

GI wanted an X-ray to check what, I don't know. But we did it this morning. I swear she might grow up and glow from all of this radiation... From my understanding; depending on what her GI sees in the x-ray...maybe not.. on Monday we will switch her back to a G-tube. Then observe. This will be done in the office. We will wait and watch her reflux. Unfortunately I have a feeling that it will be the same. She's still refluxing with a J-Tube, and that goes straight the the small intestine and was suppose to fix all of our worries. So if she still has severe reflux that affects her breathing horribly, again, then we will do a Nissen fundoplication. (gotta love Wikipedia!) So if we do that then we will combine the muscle biopsy and broviac, or a long PICC, like she had when she was in the NICU, and the Nissen. 

Man oh man. My hope is that by 7... 7 1/2 months... things will slow down and we will be settled and things will be smooooth. I feel like we're getting there.. Just a little hiccup in the road.

Like I've said, I'm back at work. And I have been asked more than once how Anabelle is. Honestly it doesn't bother me. It's just though because do you really want to know, because we're just passing by each other in the hall, and I can't fit it all in in these short 5 seconds. And also, I don't want some people to think I'm complaining, or being sad. It's just her story. I don't want them to feel bad or pity her or our family. We are blessed. Honestly. I look at her and always just imagine how much worse it could be. And how far she's come, and what a little trooper and fighter she is. 

Like today! She had such an awesome day! She was laughing (which it's been a while since she's laughed), and was all smiles. And she watches what we do, interacts with us. And most of all doesn't let all of this medical junk get in her way of being her, a happy, loving life baby girl. I have to say though, I think she loves her sisters most. Every time they talk and play with her she is ALL smiles! They love to help so so much. I am so thankful that our family has come together so well and we can all just see our precious Ana :) 


Hopefully we will have more answers as to what the next few weeks look like ahead by tomorrow. 

Oh, and the prayers, good thoughts, vibes, mojo, can we please keep it coming? I really feel it's been working wonders. Thanks <3 font="font">


With love, 
The Polks

Nursing!

Today was an awesome day!!! We got in home nursing set up. :) So while I am at work, Kyle is at home with Amelia, our four year old, Allison, our three year old, Anabelle and now her nurse! I can't lie though.. It was a little awkward first meeting her and getting everything set up. I know it will be awkward at times for Kyle though. Anabelle is still a baby, and sleeps a lot. So when she is sleeping.... What will the nurse be doing? Hm...

But she is nice, and pays attention. She did a lot of range of motion with Ana today which is awesome. I try to sneak it in throughout the day while at home, but between doctor appointments, medications, getting the girls whatever they are wanting, etc etc. So it's super nice to know it will get done throughout the week, every day. She is familiar with feeding tubes too which is a plus! And she likes to hold her; not afraid she will break her, hurt her or whatever it is that makes people to scared to touch her. 

We did however have a one night stay in the hospital over the weekend though... On Friday she spiked another high grade temperature. My first day back to work. Kyle was a trooper though. He took Amelia to preschool and took Ana (with Allison in tote) to the ER. It was his first time, and he had to do it with Alli too! He did awesome. They had to do blood work, again. Her white blood cell count was slightly elevated. I mean, normal range is 11,000-17,000, and her count was 20,100. See, slightly. An elevated white blood cell count could indicate an infection somewhere. So they cath'd her again to see if it was a urinary tract infection, and over an hour they got a DROP. No joke. The nurses tried to get an IV to get her more hydrated and get more urine for the tests.. I lost count, but I think it was somewhere around 14 attempts. And they all failed to get an IV started. The PICU doctor wanted to observe her overnight and repeat the blood work just to see. Luckily she is ok, and we only spent a total of about 24 hours in the hospital. 

He also recommended talking to other doctors of hers about getting a port or broviac. These are typically used for chemotherapy. But I think it might be a good idea. The hospital stay mid-July, the two week stay, was scary. Ana was very dehydrated. They tried many many times to get an IV started. They has the nurses on the floor try, the NICU nurses, IV therapy (supposedly super good at getting an IV), and then the doctor came in. I swear I could see his forehead starting to bead with sweat. He kept saying if he couldn't get it soon then he'd have to do a central (which requires anesthesia) or something with putting a needle in her bone... all because he was afraid she would go into shock. 
So, I think she should get it.. 

But back to this home nursing... 

It helps so so much. Today Ana had a follow up with ENT (Ears, Nose, & Throat). The nurse is able to assist Kyle at appointments, and went with him today. It helps not only to have an extra set of hands, because he will have to take one or both of the older girls. But also because she has the medical terminology in her back pocket. Luckily I am familiar because of my job, but Kyle is just starting to learn. And from our experience today, it also helps because she will be an extra set of ears to help remember what the doc says and relay it back to me. Kyle is just a bit occupied with trying to just manage just getting through the appointment with the girls. Oh yeah. I despise her ENT doc and we are getting a new one. She spent 5 minutes with them, didn't touch Ana and all she said is as follows. "Is she thriving? Good, she doesn't need a trach. I am referring you to a plastic surgeon to follow. (Do to microcephaly)". Helllloooo?!?! She has given us grief in the past too.. 

Ah. So nice to have help with the little stuff. I was telling her how nice it is that we can start focusing on ANABELLE. Not medicine, therapy, or any medical stuff (at least for a bit). We can enjoy our baby!! YAY!!!!!!


Also, it helps making going back to work a whole lot easier!! When I was home it was tough with two people, so I was panicked when it was just going to by Kyle. Not because he isn't capable, just because it's a lot for one person. 

*BIG SIGH*

I finally feel like the pieces are starting to fall together, in the right order! 
I'm totally jumping on this bandwagon and praying to goes for a good long while! 

With love, 
The Polks