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! 

Day 8 at the hospital

Yesterday Anabelle had a bad case of reflux. I laid her down to change her diaper, and BAM! She couldn't catch her breath, started to vomit, etc etc. I called her nurse once to see if her feedings were just a little to high for her to tolerate, and she said no, she's fine. And if she continues to have episodes then they will call the doctor. And just FYI, Anabelle is at risk for aspirating, so her reflux and vomit could go back down into her lungs. It's not a simple, 'Oh she's fine, no biggy. Just a little reflux.' So she was still having issues when the nurse left and I went out to request the doctor come by so we can talk to him, and went back to our room. I guess she followed me, cause as I walked in she was right behind me, luckily. Anabelle's stats went down and she was vomiting. At times it seems like the nurses only believe us when they see it for themselves. Then another nurse came in, and another. The put her on a nasal canula (I'm sure that's misspelled). Luckily she was doing better in the wee hours of the morning so they took it away. 


Today was a big day for her. She got off oxygen, got her casts off, had a P/T consult, got an IV ripped out of her hand... Oh and she is still recouping from surgery 3 days ago.  They bumped up her feeds from 10 mls, to 15 mls, to now 20 and fortified. She is on continous feeds, so she is getting 20 mls every hours, which is just under an ounce. She is still refluxing but seems to be ok. 


OH. And we got Amelia and Allison back from sitters yesterday. They've been gone all week. And i don't know what ahppened, but Amelia's little attitude is horrible! She thinks she is way older then she is, and has attitude for 5 little girls. I don't know how we're going to live through her teen years. 


I don't know how we will get through this next year! It's been so crazy and hectic these past few months. I feel like we haven't been able to really get anything done for Anabelle as far as her AMC goes. Oh, but her knees do look a lot more bent. But it just seems like we keep hitting dead ends with P/T and whatnot. So frustrating! That mixed with my disability issues and hiccups, and work needing papers and not understanding I'm not home right now, I live  at the hospital currently. Stop calling me! Ok, I feel a little better now. Maybe...


Hopefully Anabelle can come home tomorrow, but I'm not holding my breath anymore. I've heard this so many times, I just want to make sure she is ready, no rush this time around. But I'd like to remove the stress from hospital trips from our mix. We will see! 


With love, 
The Polks

Hungry Hungry Hippo

Little Miss Anabelle Grace. Ooh what an amazing little girl she is. I guess she doesn't have any other choice, she can't tell me she doesn't want to do any of this. But none the less, she is amazing. 

Anabelle had her G-tube surgery yesterday. I know it could be worse, but two surgeries in two months sucks. The first was a smidge easier on me since I was all drugged up from the c-section. This time around I could have used some of those drugs. I know it's such a common procedure, but it was still terrifying handing over my baby to someone I met two minutes before. The surgery went fast, and we were able to see her quickly too. She has some narcotics while in the OR, and she went downhill, but thankfully they were able to fix her. She was able to get off her vent in the OR too! 
They are still waiting to feed her real food. She's been on Pedialyte since 8 this morning. As we speak they are increasing her intake to 15 mls (about 1/2 oz) an hour, and then if she does ok tomorrow morning at 8 am they will give her milk. She has been super fussy today. I think it might be a combo from the pain and hunger. Just sayin. 
We meet with Apria, our DME provider, today. They showed us how to use the pump we are getting. It's small and cute, and called a Kangaroo, or Joey Kangaroo, or something like that. It seems simple enough, and I think we can manage it. I don't think it's eased my nerves about her coming home and us doing it on our own, but at least we got a crash course. 


I am learning that through all of this nurses still need some educating. It's frustrating... A few nurses have tried moving her arms around, and I have to tell them repeatedly that she doesn't move that way, or you have to take her blood pressure this way, or that cuff doesn't work for her blood pressure, or you have to have her head tilted this way so she can breath, or she likes to have this leg this way, and that leg that way. It's just been an adventure and learning experience for what the future holds.  


Hopefully we will be able to get her home this weekend. As long as we are ready and she is ready. OH, have I mentioned I love her GI doctor. The original plan from her surgeon was that we will start her on milk tomorrow, and if tomorrow she does fine, we will take her home. I was paniked because that seems a little fast, and what if she is fine for a few hours, but then things go wrong?! So I talked to her GI today, and told her my fears. She said that I run the show, and we will go home only when we are ready and feel comfortable! Amazing lady! Love her!!


But I am missing my kiddos. Amelia and Allison. :(  Thankfully we have had sitters for this whole time, but I miss them!!! Thanks Debbie, Mell and mom! 


And thanks everyone for the well wishes and prayers! They really do help! 


With love, 
The Polks

Blessed

Through everything, I have to remember that we are blessed. In so so many ways. At times it is more then difficult to remember this, but we are. We have three beautiful girls and family and friends that support and love us. I have to be thankful that Amelia and Allison are super super healthy, and that Anabelle is on her way there too. 


Thank you everyone for everything you have done for our family. I can't believe how amazing people have been, it's just been incredible. From watching Amelia and Allison for us, to the AMC family giving us advice and answering all my annoying questions, and much much more. 


Just want to try to begin to express how much everyone means to us, and the things you do for us don't go unnoticed. At times we might be to distracted or tired to actually say thank you the way you deserve, and I apologize. Just want you to know we really do appreciate everything you do for us. Thank you!!!!!!!!!


With love, 
The Polks

FOOD!

On Wednesday Ana had her modified barium swallow study. A barium swallow study has the patient sit in a chair and swallow, all while they have this huge machine that does a constant x-ray to see how things go down and where they go while swallowing. For babies, they do a thinner and thicker consistency, and see how they do with each. Typically the thicker solution is easier and the patient does better because it's heavier and easier for them to swallow it correctly. In Anabelle's fashion, she decided to show them this is not always true. She aspirated with both solutions, but worse with the thicker stuff. Aspirating means liquid (or anything foreign) gets into the lungs. This can lead to pneumonia, due to the body trying to remove this foreign body. Luckily, so far, Anabelle hasn't shown any signs of infection. 


On Thursday we saw the GI. Finally. I love new doctor appointments because they always try to get her height... Some attempt to get a number, most just say ok, we'll put unknown... The GI attempted to. They guestimated 53 cm. That's 3 more then when she was born! But again, who knows if either of these numbers are accurate, and if so, how accurate they are. It's also fun when they want to weigh now. I explain that she has casts on, and this is usually a good 3 minute conversation. Just explaining arthrogryposis to most medical assistance, and then explaining the purpose for her casts. I mean, I don't mind, I just figured that they would have this charted so I don't have to explain it 5 times a week.. I digress. The GI doc came in and we talked about her issues for about 5 minutes, and she went into what she wanted for her treatment plan. I figured I'd have to lay everything out, explain how she is up every hour wanting to eat, how I'm dead tired and it's not even working because she's not gaining.. blah blah blah. But no! The doctor barely let me talk and was asking my opinion about a NG and G-tube. It was music to my ears. She wanted me to bring her in and have her admitted for all of this just to track her growth on a NG and make sure she is actually benefiting from it. I felt like she took an elephant off my back! 


Yesterday we went into Sutter Memorial, got all settled in, and eventually got a NG into Miss Anabelle. Sorry, NG is a feeding tube through the nose to the belly, and a G tube is like a little port in the belly straight to the stomach. I don't think she likes it too much. She seems like she is wanting to eat orally still, but luckily she still likes her pacifier! I need to ask the doctor about some options to make sure she still gets the oral stimulation and doesn't lose that desire to eat orally. Right now she is on continuous feeding, and getting 20 mls every 2 hours. Other than that she is doing pretty well. Sleeping a ton, thankfully! *sigh* It just feels so nice knowing that she is finally getting what she needs. I wanted to jump up and give the GI a big hug :) 


Ok, now I need a nap. Spending the night in the hospital does not allow for sleep. And luckily we have amazing family that takes Amelia and Allison for us! Thanks Janelle, Haley & Ellie. AND Sheree & Josh! You guys are lifesavers. Don't know what we'd do without you all!!! <3<3<3<3


With love, 
The Polks

Appointments galore

To make sure I do update regularly, I am going to start updating on Saturday's and Wednesdays. It just makes it easier for me. I might miss a day here and there, and it will either be due to no new updates, or due to out crazy schedule. 

Lately I've been trying to focus on all of the positives in life. Be thankful for our family, and our three beautiful girls. Try not to be upset because doctors can't get their act together, and just enjoy each day we have. It can get hard though. Especially at 2 am when Anabelle is exhausted, hungry and just wants to sleep. But can't because she wants to eat, but is having such a hard time with the eating/breathing combination... Or when I'm trying to give her her medicine for reflux, and she chokes on it and starts to turn colors... 

I want to get to know her and her personality, but don't think that this is truly how she is. Basically she is always upset, and I have no idea which issue is making her mad at that second.. Are her casts itching? Is her tummy hurting? Is she having some refulx? Is she just mad because she can't breath? and so on and so on... I honestly feel that *fingers crossed* after Monday we will be able to start to learn who the real Anabelle is. We finally have our appointment with an ENT doctor! We also have an appointment with a GI on the 15th. We won't be able to get an appointment for a sleep study until June, but are hoping the doc will change it to urgent on Monday and be able to move it up. We are still waiting for an authorization for the modified barium swallow study. Luckily, we finally have a case manager through our insurance. So instead of me calling the doctor, calling the medical group, then calling the other doctor, i have someone to do it for us. 

Oh, and I'm off work again. Thank GOD I have wonderful bosses who understand! Honestly, such a huge weight is lifted, thanks girls!! 

And now for the best part, pictures :)

Our attempt at a bath with casts, wasn't to successful

 I don't think she liked it...

 Ducky towel, thanks Deb! 

 & thanks for GG's blanket too! She loves it!

 Look at her stretch! 

Sisterly love <3

Until Wednesday :)


With love, 
The Polks