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

One day at a time

Yesterday Anabelle had a sleep study scheduled. However, Kyle and I didn't feel comfortable with her G-tube site. It was red, sore, oozing, and she was VERY fussy. So I canceled (and will reschedule) the sleep study and it was off to the ER. I had called her primary, her surgeons office, and her GI before going. It is the last place I'd like her to be, filled with who knows what kind of germs, and she needs the sleep study over a few hours in the ER. However, no one had gotten back to me throughout the day, or they directed me elsewhere. So around 6:30 I decided to take her in. 
We spent a total of about 3.5 hours there. Answered many questions about Miss Anabelle, to patients and nurses alike. The biggest wait was for the pediatric surgeon. She was in the OR... I really like her though. There are 5 pediatric surgeons for Sutter, and we have met 4 of the 5. It's nice too because there are two in particular who have followed Anabelle since birth and know her progress and just her overall. Well, she doesn't have an infection or anything luckily. But the tube was moving around too much, it was 'wallowing'. So basically, the whole is getting bigger then the tube. This is causing all of the redness and oozing. It wasn't oozing puss, rather just milk and gastric fluids. She put some gauze and tape to hold things in place and absorb the liquids. We just change it when it is wet, and it seems to be helping. The past few days Anabelle has been just flat out fussy. Hard to console, crying non stop, etc etc. But now I think it's more normal baby fuss. Which is a nice change. 


Also, the surgeon advises that we no longer hold her chest to chest. With the way Anabelle... is, especially her legs are, it's been the easiest and seems to be her favorite. It's very difficult to cradle her. It's possible, but difficult. Her hips don't come in as much as they should, and her head control is lacking. So I will admit it, I started crying. She did a good job trying to console me. It's just hard because I want to give her comfort, and I can't even hold her how she wants. Like everything in life, there is a reason. 

Don't get me wrong. It hasn't been easy. She will give me a look her and there. It feels like she is trying to ask me 'Mom, what the heck are we doing!?' I know that being forced to do this will help her all around. Help her tube to heal, help her legs come down and get together, and more. 

I mean, just look at her progress so far! The picture on the left is from the NICU, maybe at a week old. The picture on the right is from tonight, at 12 weeks old. We haven't started any real intense therapy yet either. Just a little passive range of motion. AMAZING! Her legs still come up if she is laying in the right position, but the fact that they can come down is just amazing. 

Next week we see our OT (Part of the early development program here) and hopefully start doing craniosacral therapy! 

With love, 

The Polks

Home at last! - again

I'm not very good at keeping up with whole posting twice a week. Opps!


Well we got home with Miss Anabelle on Saturday, so we've been home for 5 days now. On our own. With this stinking G-tube stuff. It honestly hasn't been horrible. It's just difficult to move around the house while holding her. I feel like our home has transformed into some sort of hospital clinic now. We have an IV pole and all. Oh, and our dumb apnea monitor doesn't work correctly, or we're using incorrectly. 


She is still having pretty bad reflux. She is just so darn sensitive. We lay her flat to change a diaper and it starts. And it's horrible. It usually doesn't come up, it just hang out in the back of her throat. Which isn't fun. I'm sure it is just sitting there burning her, and then she cries in pain, and I fear she will some day aspirate it. And she favors being held chest to chest, and dislikes being put down. We can sometimes get away with it, but usually not for long. We have to pad her swing so that she is basically sitting straight up. And she favors this one particular head position that makes it a little tough to lay her down on her back. Luckily our home therapy people let us borrow this pillow thing. It's called a Versa pillow. It's full of little beads, and you shape it how you want, then you can suck out all of the air and it holds its shape! We finally got to use it today. She is actually liking it, kinda. 

I am also excited because they do craniosacral therapy! I just learned about it earlier this week, and was sure it would be hard to find, and expensive. Luckily I asked, and they do it! And it's free! I'm just hoping we can get enough visits for us to become comfortable enough to do it if we don't get visits for it at least weekly. 


I don't know how I am going to get use to this life of doctors. I know we have just begun, but shoot! How do other families do this?! This week we have 6, yes 6! doctor appointments. In 5 days! This week we had pulmonology, two home visits, Shriner's for castings, a post op check, and sleep study. 


Pulmonology didn't do too much. They said that they want her to see cardiology, neurology, and be followed by the pulmonology team. As far as positioning, just don't put her head to her chest. Duh. You see, Anabelle likes to arch her back and keep her airway open. It's hard for her to breath if she is in any other position, and sometimes even that position is hard. I mentioned   Stridor, and they agreed, but didn't say yes or no. Just 'yeah, that's a possibility.' UGH. Like I tell Amelia, it's either yes or no. 


On a good note, we weighed Anabelle at Shriner's on Tuesday. We use their scale for her weighted since she is there weekly. And guess what!? Little miss Belle is 7 POUNDS! So in twelve weeks, she's gained two pounds. Hopefully it's all due to the G-tube and it will just keep going up and up. Also, she is super visual. As always. In the NICU the nurses said she was very 'social'. She loves looking around and seeing what's going on. But now, she is starting to really look at you. She is smiling more and more, cooing, and just being such a cutie pie! It's tough because just laying her back a little to look at her and talk with her gives her reflux. It's just a balancing act. Right now her voice is pretty raspy from that, combined with crying a bunch. It's sad. We've been giving her Tylenol for any pain she might be having, as well as Zantac and Prevacid. 


It's just nice having her home though. I'll take having us all together over a few extra hours of sleep and a more organized home. <3


With love, 
The Polks

Oh, and here are a few pics of the latest hospital trek

'Uhh... mom, What is this thing?!'

She loved this thing! Don't tell, but it made it home with us :D 

Comfy at the hospital

After surgery, hooked up to some machines; Her feeding pump, leads, pulse ox, as well as oxygen. She liked the bouncer/swing they had though!