122-79 = 43

I just counted all of Anabelle's doctor appointments, ER visits, and hospital stays thus far, and it drives me crazy how much this little girl has to be bothered by doctors. I could have missed some doctor appointments because sometimes I don't get them written down, but this is what I counted as of today:


 41 doctor appointments 
 36 days in the hospital
+2 ER visits
79  doctor things in her short 122 days of life


This means we've only had 43 days of relaxing. Ugh.


I have to share this story to get it off my chest. This past weekend we all went out as a family to a fundraiser. I was sitting their holding Anabelle as she was sleeping. People were walking back and forth, not really paying to much attention to us. But this one group of people... It appeared to be a family; mom, dad, older kids. The dad made it obvious to stare. I think he was staring at the bag that had medical tubing running from it to my daughter. But still.. just ask! As he walked toward us, he STARED. As he passed us, he STARED. As he walked past us, he STARED. I looked up and when he noticed me, he smiled. I said hi, he said hi back. And continued to stare. Seriously!? I wish I was more experienced with handling these situations. I know I will get there over the years. But c'mon man! 
I just find it unfair. And right now I'm having one of those moments where I question why. Don't worry, it'll pass in a few minutes :)


Last week was suppose to be easy. On Monday we only had casting, P/T and a follow up with her surgeon. (Whom I love by the way!) But in about 30 minutes we added a sleep study and follow up with her pulmonologist. 


First, her casting. It went awesome! Except she has a small pressure sore, so this set of cast only lasted a few days. They use soft casts so we can take them off at home if she needs, which is nice because she needed them off yesterday! But her doctor is so happy with her progress. Even though it's slow. But her knees will barely go hyper extended anymore! We're going forward still until he feels she hits a wall.

Just look how far she's come! From not even being able to take a picture of her legs separate to... 

This!! 

Progress! I asked the doc if he thinks she'll need braces (AFO's or KAFO's) to walk, and he said probably. Just because the muscle there isn't what she really needs to walk. But I'll take it! Now, he's not saying he's 100% sure he thinks she'll walk, but he said if she does. Now if he says no, we're getting a second opinion, of course. 

Then we had P/T. She laughed for her p/t lady! She's only laughed a little for me, but this was a hardy full on laugh. Stinker butt. Overall though, she hates p/t.

Then the sleep study. Mind you this was all on Tuesday. Casts at 8, P/T at 3:30, then the sleep study from 7:30PM-6 AM. FUN day. 

Wednesday we met with Dr. Chipps, her pulmonologist. He said that her sleep study was improving. Not good, not great, but better then the first two. Good news was she doesn't have to be on oxygen anymore, only when she needs it, and we don't have to see him again for 2 months! YAY!!!! I wanted to hug him! But he's not really a people person and I think he would have told us to find a new pulmonologist... 

These past few days have been hard though. She's been really crabby. Little princess doesn't like to be put down. She likes to sleep chest to chest. Which makes sleeping for us muy difficult. I usually sleep on the couch with her so that she isn't crying all night. With our first two we'd let them try to sooth themselves. But Ana can't really do that. She has trouble keeping her binki in by herself, and we (I) always think it's something bad when she cries. 'Are her casts bugging her?' 'Is her reflux bad right now?' 'Does her tube hurt her?' 'Does she have gas?' And on and on and on. It's a guessing game. 

But then she makes up for it. She'll relax and calm down, and give us the biggest smile ever! Underneath it all, she is a happy baby. At least she wants to be. She love talking to her sisters! She'll talk their ears off! And I think they love her too! 

OH! And Amelia started preschool last week!

I know, my kids are cute :) 

This weekend Kyle and I get a night away for my birthday :):):):)

Thanks Leah!!!!

Yes! A family member is crazy enough to take on all three of our kids overnight, plus their own! And we get to escape to San Francisco for the night, and go to Alcatraz. I am nervous, terrified, thrilled, scared, excited, panicked, and more all at the same time. I know we have enough equipment to make sure Ana stays safe and sound. It's just scary. And I know we're leaving her in capable hands. I don't doubt that. I just know it can be rough when Kyle and I are home, and we have just our own kids. Anabelle requires a lot of attention...

But we love her. So so much <3

With love, 

The Polks

The small stuff

What a week. Poor Anabelle has had eight, yes, eight, appointments this week. I'll give a brief summary of the major ones.

Sleep study/back to pulmonology: We did another sleep study. It was horrible. They were trying to jam two cannulas into her little nose. One to measure the co2 output and one to give her oxygen. After several failed attempts, they just did the co2 cannula with some blow by. She was uncomfortable the entire night, was screaming every 5 minutes. Finally we both got about an hour of solid sleep after they started the blow by. We went back to the Pulmonologist. I guess they finally took it serious because we got to meet the actual doctor this time. He said her second study was better, only about 110 apneas. (Not sure if that is total or just obstuctive apneas). However, it's still dangerously high. We started her on 24/7 oxygen today, 2 liters. She hates it. I think she's warming up to it a little now though, she's sleeping! But he said we will repeat the sleep study, and if that doesn't work then try a CPAP, repeat, then if that still doesn't work we will discuss a trach. This doctor really understands what a big decision it is, and told me how we will make the decision together. Very comforting. Hopefully the oxygen works though! We will repeat the sleep study next week to see where we are. Oh, and he said if this continues long term it could lead to brain damage because she only breaths about half the time. Ah.

Physical therapy/Shriners: We had our first visit with outpatient therapy (not with Shriners). They showed us some stuff, mostly what we already know and do. We also meet met with Shriners hand specialists. She gave us some stretching excersises, and said we'll regroup in 3 months to see where we are at. But good news is Anabelles range of motion is great! She can flex her elbow's a little more then 90 degress, and extend about 30-45. She explained how Anabelle is a little backwards from typical AMC kids. I guess they usually see then with extended arms and flexed legs. But that's Anabelle! :D Nothing is 'normal' when it comes to her medical care. *sigh* But she said she is too small for splints right now, but maybe in 3 months we will try them. Also, she said she doesn't want to be too agressive because Anabelle will show us what she can do and needs help with, from there we will see what we can do to help her. She doesn't want to do something now that will damage her later.

GI: Since her reflux is still horrible, we have switched her to some RX formula. We have three to try, one a week. In three weeks we will follow up with GI and determine if anything helped and if not we will switch to a J-tube. It will help *hopefully* with the reflux, which in turn will help with her breathing. I love her GI. She doesn't fool around. She gets things done, and doesn't make us feel dumb when we have silly questions. And she has lots of energy. Maybe a little to much at times for this sleepy mom. I just pray this works!


Other than that, little Anabelle is just too cute! She smiles all the time now! And her big sister love love love her!!
Kyle and Amelia had a conversation the other day. I wasn't there so I could be misquoting.
Kyle - "You know Anabelle's special right?"
Amelia - "Yeah, like a present!"
Kyle - "Do you know what that means?"
Amelia -"Yeah, it's good!"

Melts my heart. They don't see her any different. Honestly I tear up when I just think about them together. Amelia wanted to cuddle with Ana, and actually sleep with her! Well.. I couldn't let her do that, but she just cuddled as long as she could. Ah! Got to love my kiddos. They remind me of what is important in life. <3

With love,
The Polks

Trach?!

I have known for a while now that Anabelle doesn't breath as well as she should. I guess I never knew how bad it really was until they gave me some numbers behind it.
I just got back from our Pulmonology follow up. They had the results from her sleep study. And the results made me cry.  She started off easy... Anabelle has 5 central sleep apneas, 1 mixed (I forgot what this means), and here are the real kickers, 236 obstructive sleep apneas, and 224 hypopneas. Her miminum oxygen saturation was 40%... It should be 100%! Her total number of desaturations was 480 for the 9 hour study.

Then the really bad part came. The doc asked if I have ever heard of a Tracheostomy, or knew what it was. Going into the appointment today I had two fears. One being they would put her on oxygen. The second, larger fear was they would want to do a Tracheostomy. I've learned when the doctors ask if you have ever heard of a procedure or surgery, they are leaning towards recommending it. Highly recommending it.

Not only is this another surgery for Anabelle. But how the heck are we suppose to handle a trach at home!? I don't know the first things about trachs! Obviously we want what is best for Anabelle... I just don't know how this is going to work.

Tomorrow night we are repeating the sleep study with 1-2 liters of oxygen, they are going to review, and then we have an appointment on Thursday with the actual Pulmonologist. These past two times we've meet with the NP, who has confered with the doctor. I am praying that all she will need is some o2 while she sleeps and wal-la!  She's fine. I have a gut feeling that won't happen. I had a gut feeling about the g-tube, and I have that same feeling again. Just reading other kids stories, and the similarities.. It's just tough.

Well, we will keep you all updated on what happens this week. In all we have 8 appointments now! Wish us luck!! :D

With love,
The Polks

Sleep study

Last week we were scheduled to do a sleep study. They want to do it to check her breathing. Last week the day of Anabelle's appointment, we were at the ER because of her G-tube. I called to reschedule it and they said the next available was on the 5th, of July... Then yesterday morning they called and said they had an opening that night. Yay! I regret not taking a picture of Miss Belle during the study. She looked like she was half robot. She had two wires stuck to her head, three on her body (leads), a strap around her, a pulse ox, and a nasal cannula. They didn't give her oxygen through her nasal cannula, they just monitored her breathing through it. 
I tend to obsess over numbers on the machines. The one that monitored her in/out breaths should have been between 8-40, depending if she is breathing in, or out. Well... At times it would be 0. And stay at 0, for a while. Now, I'm not a doctor, but I know that's not good. And a few times it was high, above 40. The tech said (before we started) that she'd be surprised if she got above 25. Great. It takes about two weeks to get the full results. The pulmonologist has to read everything from her study, which was about 10-12 hours straight. I was impressed it will only take 2 weeks. I read an article warning to be prepared to wait for 6 weeks. 


On the plus side, she seems to be a happier baby! She will smile more, coo more, etc etc. It's wonderful!!! She is so visual and loves looking around. If we hold her, she will move from side to side looking at stuff. The older girls get too excited sometimes, and will talk to her and want her to look at them. But, they will do all of this about one inch away from her face. So naturally she dislikes it and looks the other way. They tend to get offended and ask why she won't look at them. But it's been really nice. They love her so much! Jealously will pop it's ugly head occasionally, but mostly it's them coming over to give her a hug and kiss. Amelia will whisper secrets into her ear. Honestly. Secrets. I can't hear what she says, and she won't tell me when I ask. It's adorable. They sing their made up songs about how they love her. Couldn't ask for more precious moments :)  

Here is a video of Anabelle smiling and talking

                                           

I feel like we *might* be getting into our groove. We still have no routine, or even a glimpse of a routine. But things are getting a little better. I didn't believe all the other moms when they told me things will get better with time, but thankfully they were right! Thanks AMC family! I couldn't have got this far without their help!!! 

Speaking of AMC... Just in case you missed it, AMC awareness day is June 30th. So please wear blue and help spread awareness. There are a few really cool sites where you can purchase AMC awareness gear. No only do you get cool stuff from it, but it helps raise money for awareness. Can I say awareness one more time? I don't think I've said it enough. 


Honestly though. Before Anabelle I has NO idea what AMC was. I don't think I could have pronounced it or even tried to spell it before hearing and seeing it hundreds of times before hand. I have learned so much since Anabelle has been born. I have even been lucky enough to educate some doctors! The doctors who followed my pregnancy (four perinatologist) told me that the combo of how her legs were and Gastroschisis is something none of them have seen, most being in the field for over 30 years. Then I find out that yes, it's common for AMC kids to have intestinal things go on. Oh, and just a little more education on AMC.... I think this helped me understand how to explain it better as well. 

(Click here if it's to hard to read below)

Off to bed, finally :D

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! 

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