Tooth fairy, surgery, friends and more!

Let's see.. where to start.

Last post I mentioned we were moving. Well, we've moved! We love being closer to family, and not to mention back to a slower paced town. It helps reminds us to stop and smell the roses while we are running around like chickens with our heads cut off.

Also, Ana finally had her procedures/surgery that we were waiting over 6 months for. About a month ago she went in and they put Botox into a couple muscles in her neck, removed her adenoids and did a bronchoscopy. There was a different doctor doing each part. The Botox doctor was first and quickest. Then the bronch doctor. He came and talked to us after he was done. He said that everything looks great. That even in deep sleep she protects her airway. And there are no missing pieces, and it's all in working order. So the issue is she just needs to learn to coordinate closing her airway while swallowing. Then the adenoids doc came in a few minutes later. Kyle had stepped out of the waiting room for a minute. The doc came in holding a specimen jar. Wait. Let me digress.

For this big day, we had to get to the hospital to sign in and wait around very early, about 6:30. For the Polks, that's awfully early. So while we were waiting, we were playing around with Ana. Kyle was holding her upside down and we noticed how her top tooth is finally coming in!

 

 

Who knew that fuzzy, upside down, can't even really see it picture would be the only one we'd get with that tooth inside her mouth.

 

Let's continue. The adenoid doc came in, holding a specimen jar. I thought maybe he was going to show me how massive her adenoids were and that's why she would get stuffy at night and sick so easily. But he looked as if was wearing sandbags around his neck. Heavy. Then I got a little panicked. Just as we were walking back, Kyle walked in. We followed the doctor from the waiting room back to the holding room. He paused. I feel as if I blurted out "Is she ok!?". He calmed my fears, letting me know she did great, but is down a tooth. He accidently knocked out that previously mentioned tooth. Then handed over the specimen jar. It held her tooth. Not adenoids. He explained how he had the gag(not sure what that is) in position to hold her mouth open, and it tipped and pulled her tooth out. It wasn't a clean pull either. A little flab of gum got ripped and pulled too.

 

 

It's a small thing. She's fine. She recovered wonderfully. Although those first few hours were horrible because she wasn't feel good, and her only soother AKA pacifier couldn't be used because of the tooth incident. But she woke up the next day with a big toothless smile on her face.

Even though it's small and she's fine, Kyle and I feel slightly robbed. It's just another unnecessary baby thing taken away. Her first haircut was in the NICU. And it was the whole side of her head, which wasn't even used. And now her first tooth was taken before it ever really came in. Ok, just had to throw myself a small pity party:)

 

But in closing, the doctor feels horrible! Right after I said it was ok, things happen. And he said "No. It's unacceptable." What do I do with that!?  Things do happen, we understand. As long as she is doing ok, we're ok. He checked on her in recovery (which is rare), called me later that night, and continued to apologize at the follow up.

 

It's been pretty quite around here. Just trying to get things in order, line up appointments and changing things to our new address. Which is proving more difficult than thought with some of her services. We also decided to nix the in home nurse for now. So Kyle is being super dad and juggling the home and appointments. We're also still trying to get her to tolerate things through her G tube. Remember, she now has a GJ tube, so there is a part for each. She's still getting a majority of formula through the J. We're also going to be introducing some blended foods through her G too. I'm just still nervous, but I need to just go for it! I've heard wonderful things about blended diets and how people flourish on them. I'll keep you updated on how it goes.

 

We also just went to our first AMC annual conference! It was amazing. Some kids didn't really want to play with Ana since she's not mobile, and I think it motivated her. She was able to see how these other kids scooted around, roll around, wheel around, etc. And since they didn't just stay by her and play with her like her sisters do, I think it pushed her to get mobile. She's a pro and pivoting, and she's starting to slowly scoot! I need to edit the video and post it.  I'll have another blog about how wonderful it was, in detail.

 

She also is very interested in food. We're scheduling another swallow study (and sleep study), then moving forward from there towards orally eating.

 

It's been a crazy few months. I'm promising myself to keep the blog more updated. I really do apologize!

 

With love,

The Polks

I think I can, I think I can, I think I can

I posted a status update of Facebook that we got the results back from Anabelle's latest sleep study. I didn't go to the appointment, but Kyle told me some numbers over the phone and they were awesome. 

But then I just sat down and really compared the numbers. And had to update everyone about how wonderful she is doing! 

Her previous sleep study was June 2012. Her last sleep study was December 2012. 
Here is the differences

                           JUNE          DECEMBER
Central apnea:        69               12
Mixed apnea:          24                0 (Yes, ZERO!)
Obstructive apnea:  216              2
Hypopnea:             580             38

Desaturations:        484            20

In June her oxygen saturation was 96.1% with a min of 52%. The time below 90% was 17.9%.
In December her oxygen saturation was 92% with a min of 65%. The time below 90% was 7%. 


There are more numbers listed. But these are the main (and most impressive) (oh and less confusing) numbers. 

They did say she needs to be on oxygen at night. Which she absolutely hates to the maximum. I tried to connect and get her all set up for tonight, but it's been so long it just wasn't working. There is a part for water (to have it not dry her nose out and keep it moist), but when I was connecting it and turned it on, water just shot up like a fountain. Alli was there to help me clean up though. :) 


But we are having a tech come by tomorrow to show us how to do it all again. Gotta count our lucky stars that it's been so long since we've used it that we've forgotten how to use it. 


While I'm at it...

We meet with her geneticist last week too. Nothing new. I guess he actually cancelled our appointment (forgot to tell us though) because the new tests he ran on her muscle biopsy didn't reveal anything new. And he has no answers or insight as to why what happened happened, or anything to suggests but to continue what were doing. Makes me feel so great to have put her through a muscle biopsy for that. But then again, if the news was different I would be singing a different song. 

We go to see Dr. Hall at the end of this month. She is a geneticist who has done lots and lots of AMC research and is supposedly the best around town. 


Ok. I'm not ranting and raving about how wonderful Anabelle is doing. 

AH! And Kyle took Allison to get her first haircut EVER. I'm still a little sad over it, but she looooooves it <3 font="font">

 This is her being a good. She's learned she can make funny noises with her mouth and tongue 

This is her 'Are we done yet mom?' look. I was just trying to get a picture with all of her gear, but she disagreed with the idea

 Gotta throw one in of Amelia too, just cause she's a cutie pie. 

With love, 
The Polks 
  

Pink!

I had a nice long (almost done) update all typed up, couldn't finish it because of life, so I saved instead... And when I get time to come back.. it's vanished. 

I apologize if I don't include everything now.. because time goes on and I just forget things :/ 

Man o man. Have we been a busy family lately. 

The most important update, one I am sure everyone is dying to know about. 

PHILADELPHIA! 

It was perfect! I'll start from the beginning. 

 <---- anabelle="anabelle" happy="happy" s="s" so="so">

We were flying out of SFO (San Francisco), which is about a 2 or so hours drive for us. We decided to drive to Richmond area and take the BART the rest of the way to the airport. All went well! We got there, check in was great. We had a layover in Denver. Oh and we sat next to a lady on the way to Denver that was SUPER sweet. And Ana smiled tons at her! Which is a huge improvement because she went (and sometimes is going) through a phase where she scream/cries at strangers. A little traumatized from doctors and nurses I think. We get to Philly, that went fine (minus the cab driver not knowing the city...) Go to our hotel. All is great. Ana did great sleeping somewhere foreign. 

We decided the next day to go to the hospital early to grab something to eat in the cafeteria before since we were in a hotel. We got to Shriner's about 2 hours before. We filled out all the registration papers and were told to go to clinic. I didn't think that the appointment would be as long as it was, so I think we can just grab something to eat after. Boy was I wrong. 

We got called back to a room early. We answered the same ol' medical history stuff. Waited. Saw Dr. Z (the hand expert). He was very nice! He knows and is willing to coordinate with the hand expert at our local Shriner's, whom we have no qualms with. She is actually helping us with our Miracle Flights paper work. He said that a muscle transfer will probably be unlikely for Ana. For two main reasons. 1) Taking good strong muscles from her legs to move them would only make her legs weaker, which doesn't makes sense, and 2) He needs a good nerve(s) to hook the muscle up to, which doesn't seem like it would happen or be easy with her arms. He did say to keep up the range of motion, and that he thinks some elbow splints would help with bending her elbows more. The more they bend, the bigger the possibility for independence. She might not be able to bring her hands to her face, but if she can get her forearm to a tables edge and use her weight to bend to her hand that's up on the table, then she could eat, brush teeth etc. I really hope that is an ok explanation. 

Then we meet with the PA (physician's assistant). Talked some more. 

Then waited some more. 

Then we meet with Dr. vB (lowers expert). He took measurements. How much she can bend (flex) and straighten (extend) everything; ankles, knees, hips, wrists, elbows, shoulders, head... We talked about different options. Explained what we have done so far to him. Never once did he say 'Let's try to get her knees to bend to at least a sitting position.' We decided serial casting would probably be a flop since she's kind of plateaued. So he thinks that AFO's and KAFO's will be better for her. So he put her in plaster casts until the braces are ready for pick up (1 months time). The AFO's will be for her to wear during the day, the KAFO's will be night time. The KAFO's will have a lock on them. This will allow us to flex her knees at night and lock them, and gradually over time keep flexing. But this also gives us the freedom to remove the braces and give her baths, continue therapy, and paint her toenails! For further down the road.. he likes to do hip surgeries around 1-1 1/2 years old. We didn't talk in too much detail only because we were already approaching the 4+ hour mark. But in short, he recommends doing a surgery that just nicks the tendon on her hip that is keeping her from laying flat. I have no idea what tendon, or if that has a name. He also talked about doing a hip osteotomy. This one is big and scary. And we will need some time to talk about it with him more. 

Oh and he took x-rays! I'm not sure why x-rays weren't taken locally before treatment started. I think we were just so excited to finally be getting ortho treatment that we were in a daze. But after a while we asked and were told they are not needed. Ok, not going to focus on the negative. He took films of Ana's ankles in a few different positions, her knees fully bent (her fully bent), fully extended, and of her hips. We learned that she has oblique talus. To my understanding, her ankle bones are in socket, but not perfectly. And he found it interesting. He thought she had vertical talus. So interesting to me that this was found, and treatment might differ, because of a simple x-ray. Sorry, I got sidetracked again. I mustn't dwell on the faults of previous doctors. And they point a little downwards. Her right foot arches too. Her knees look fine (need to ask about the patella, totally forgot), and her hips still look great and in socket. YAY!

I just have to say. The ENTIRE staff is amazing! I have tons of little stories. One family has a bunch of kids, two AMCer's, were there, and they also have a brand new baby. BRAND new. So while the kids were getting films (I believe..) the check in gal held the baby for the family! The PA helped us get subway info for our way back to the hotel (but we ended up cabbing it due to time). When people entered the room they didn't just sit and stare, they introduced themselves! Explained their role and why they were there! The entire staff offers their help. If I have any questions they make sure I know how to get a hold of them. And when I call/email, they RESPOND! In a timely fashion to top it off! Oh, another big plus... the doctor does the casting himself! And it's a single bed cast room vs. a 6 bed open curtain cast room where you hear the kid next to you screaming! Oh, and they offer you their left over pizza from their pizza party! Which was a life saver since it was after 5 and we hadn't eaten. 

It was so nice meeting other AMC families as well. Seeing their kiddos! We got to chat with a few different moms while waiting to get fitted for braces. 

Ana on the other had was not a happy camper. She was wanting sleep and was done with people touching her. Little did we know she was also coming down with a cold. 

I've heard Dr. vB's casts are painful, so I packed and used Ana's Tylenol with Codeine. 

So our flight home. It was ok.. I felt bad for Ana because she hated her legs being touched, and felt bad for those around us because she was screaming. During our layover in Denver a wonderfully nice lady came up to us. She asked if Ana just had surgery. Oh man, here we go. Explained no, AMC, and what were doing. Luckily Ana was sleeping. Surprise! The lady has a friend with AMC! YAY!! She asked where we were going/coming. Explained that as well. She was floored! Her friend has raved to her about Shriner's Philly, and how great their doctors are. So any adult AMC'er who had a friend in Denver on 11/6, I'd love to get in touch with her again! Very nice lady!!

We get home and Ana is feeling too great. We also had a nurse the day after we get back who was shadowing our regular nurse. But this nurse wanted DETAILS. We don't have everything in writing as most things are a "you try it out and figure out what works at home" kind of thing. Plus we didn't know she was coming, plus we had a doctor appointment. At the doctor appointment Ana spits some brown up. Weird. She has nothing in her stomach, especially nothing brown. The doc says to start an oral med again, but lowers the dose. It has to be oral because it coats the stomach lining, and if it goes through her tube then it won't get to her stomach. So at home I try to give her some. The new dose is .25 ML. 5 ML's equals roughly a teaspoon. 1 ML is about .2 teaspoons. So 0.25 ML is nothing! To us. To Ana it's tons. She chokes, gags, doesn't like it, doesn't know what to do with it. Then she throws up. Big time. And all brown. Off to the ER. I'm not waiting this out. They suspected a bowel obstruction. So they admitted her, to the ICU. Which means constant Pulse ox and monitoring (more wire when holding her, blah). Come to find out I was just giving her too much Tylenol with codeine and she was sick. I was trying to treat the symptoms of the Tylenol with more Tylenol. Mom of the year award goes to me... 

Finally four days later Ana was finally smiling again! And back to herself, thank goodness! 

OH. And we got the MRI results, but haven't had the follow up. So I'll update when we do that in the beginning of December. But nothing huge was found (at least from what I can read...)

We have a follow up sleep study next month too. 

Fun time!! Pictures! 

 Halloween- Tinkerbells!

 

Pooped after getting casts! 

Happy to be home!!

My three babes <3>

Amelia hugging her booked and 'sleeping' in Ana's bouncer :D

Until next time - 

With love, 

The Polks

Just keep swimming

I started out writing this post a few days ago. Then put it off, then  got busy. I think I delay updating because it makes it a little to real sometimes. Sorry. It's easy to go through the motions and not think due to being to distracted by what is currently happening. And our hospital and doctors are very into having us make big decisions. So we focus on that instead of, "Hey, this is all really happening to our infant daughter."


So here it goes.. as always, very busy little girl.

Yesterday she had her surgery. Her surgeon found a port small enough for Anabelle. Which was so exciting, that way she didn't have to have a broviac, meaning there are no extra cords or tubing sticking out of her. So she had the port place, had a muscle biopsy and they switch her J-tube to the same type of tube, just a new tube. 


So in preop, we meet the anesthesiologist. After looking over her veins, he asked us why we were getting a port, and that she has great veins. ARE YOU SERIOUS?! This has been something Kyle and I have been deliberating over. Because it is optional. But then we keep reminding ourselves that winter is coming, and that we don't want her to go through what she's been through for blood or an IV one more time. Plus, if she gets sick again, and dehydrated, and they can't get an IV started, she could go into shock and things could be 100% worse. Thanks Dr. Anesthesiologist for making us doubt our decision in the 12th hour. Thankfully her surgeon (who has known her since birth) agreed with us and went forward with the port.   

The surgery took longer then expected. The surgeon said it should all take about two hours. When the 1 hour 45 min mark came, I called back just to see where they were, how she was doing, etc. The nurse said that they just finished the port placement and J-tube, and were starting the muscle biopsy. AH. Why? What happened? Is she ok? Well.. she is/was fine. 
The issue was the doctor had a tough time placing the port due to her anatomy. I understood what that meant when I saw her. Typically a port goes right around or below the collar bone. She had about 4 nicks where he attempted to place it there, then one on her neck covered with a steri-strip. He ended up placing it on her side, below her chest, but kind of on her ribs. There is a little cut about an inch or so above it where he cut to place it.  Before we got to see Anabelle, the surgeon talked to us. He explained all of this to us. We were scared, having no idea what to expect and all and asked how she was. He said she was fine, she did great. But that he was frustrated and not thrilled with what he had to do. He didn't like where he had to put it, and that it is going to her jugular, rather then normally coming out by the heart area (from my understanding). But that it is fine, will all work the same and she won't know the difference. This was huge coming from him. He is a very reserved fellow, who only talks when he needs to, and doesn't speak very loud. Him telling us how he was frustrated made me realize how different Anabelle's body is then other kids. 
But all in all it went pretty smoothly. The anesthesiologist let us know, again, that she has a small airway, and it was difficult to intubate her. But it was nice because he gave me pointers to let the next anesthesiologist know ahead of time what to expect and how to make it easier. 

We finally got to see our baby girl about 4 hours after handing her over. She was not a happy baby. We discussed which pain meds to give to her with the nurse. She said Morphine. I was TERRIFIED. The last time she had Morphine was after her Gastroschisis repair. And she was on a ventilator for 5 days. And they had to bag her time and time again. Like I said, the hospital is very parent guided. Great. Make me make this choice while my daughter is waking up from surgery, in pain... Ok, let's do it. Her normal dose would be 1.5 MLs, and we started out at .2 MLs. About 15 minutes later we realized that didn't do much. So she got another .2 MLs. Then she was feeling much much better. No more crying. Her crying wasn't full on crying, it was more like whimpering. And no side effects!! She did wonderful with it! Still hate giving it to her... but it worked. Then we were still suppose to go home that same day. Neither Kyle or I felt comfortable with that since she had so much done. We just didn't feel  comfortable we could control her pain, and what happens if her breathing acts up? Nooo thank you. Finally her surgeon said we could stay overnight. Oh, and I got my honorary nursing degree yesterday too. I wish it could work in real life and I could skip the schooling.. Ana's nurse in recover just mentioned how I know everything about her and how I could do everything she was doing. So maybe I could just be Ana's nurse :)

Later that night the nurse on the floor was giving Ana her meds, and she clogged her brand new tube. Now... I've done this countless times, so I knew it could be unclogged and didn't panic. But I guess her nurse is new, because she mentioned, 'Great, the rookie nurse clogged your tube.' Next time ya might want to keep that thought in your head, just sayin'. So I walked her through it. Told her what to grab to unclog it. But man, she clogged that thing up good... It was tough to get undone, but after about 20 minutes it was done. 

Anabelle slept all night, with only waking up her and there to whimper and complain. But overall her pain was controlled. She did have some weird breathing until about 11 PM. She was breathing like you would after a good hard cry. Kind of a hyperventilating breathing. But she got Tylenol with codeine at 10, and by 11 it stopped. 

I do have to mention that after she got her Morphine and opened her eyes in the recovery room, we got a few half heart-ed smiles out of her :)

In other news..earlier this week we meet with her GI. She has plateaued with her weight. She is hovering around 11 lbs now. She wants us to slowly increase her feeds again, until she can no longer tolerate it. We have to find her threshold. We think that with the extra therapy, and how she is almost always sweating, that she is burning to many calories. And since we can't stop either of those things... So she was at 16 ML/hour, and the GI wants us to go up 1 ML every day to every other day. As we see fit. Another thing where it's great because we went to medical school and all. 

I really can't complain. I would be upset if they were telling us what to do and not asking our opinion. It just makes me nervous because I'm not a nurse, a doctor, or anything close to having any say over anything medical. We will see how far up we can get Anabelle. The goal is at least 20, but who knows what she needs, it might be higher. Her GI is trying to avoid the use of TPN. It can cause liver failure, and we don't need to go down that road. She is a big advocate of NOT using it. 


In family news!

Allison started preschool (the same day as surgery...)!!! She will be in school 5 hours a day, for 5 days a week! She said that she liked it and had a good time. Of course I feel horrible though. Since it was planned the same day as surgery, we didn't pick her up and Kyle's mom did. Thankfully we have someone to do it (Thanks Cindy!), but it's something I would want to have been able to do. She did get cut on the chin by a little boy though... :( 
And Amelia had her first day in a 5 hour class, with a new teacher. She said that she liked it too!! And that she had fun, which is such a huge relief. OH. I called during the day to check on them. The teacher said that Amelia didn't take her nap, as usual. But she kept saying that she had to go potty. This is her way of avoiding naps and bed time. But every time she got up she did her business, so I guess you can't get too mad. 

But they are such awesome little girls. The other day Amelia asked if the doctors were going to cut Anabelle. We have decided it is best to keep the girls in the loop, and try to prepare them and explain things about Anabelle as best as we can. We don't keep anything a secret, we are an open book with them. I know they are only toddlers, but.. we think its best. We'll see how it plays out in a few years, but, for now we are doing what we think is best.

I digress. She asked about the doctors cutting Ana. I said yes, they are going to do it tomorrow. She got up and come over to us (I was holding her), and said how she doesn't want the doctors to cut her. We explained what they were doing, and why. What to expect the after, and how she will need to be careful with her. She said that she was sad, and that she didn't want them to cut her. And how she wanted to cry. Oh. My. Goodness. I love her!!!! She didn't cry. But just to know that she is so mature at four to realize this, and what's going one. Meanwhile, Allison is in the background jumping up and down, saying, 'They're going to cut her', kind of in a singing voice... 

Now, some might think this is horrible, because it's too much on a four year old. You might be right. To me though, I interpret it as her understanding what her baby sister is going through, showing proper emotions, and showing that she loves and cares about her sister. 

With each passing day Anabelle is getting better and stronger. Tomorrow we get to schedule an appointment to use her port for a blood draw. I'm terrified. I'm scared that it will still hurt, but mostly I'm scared it won't work. We will see... 

But we appreciate everyone's support, prayers, thoughts and good vibes through everything. It really makes a difference knowing people are there for us, and more importantly for Anabelle. Thank you!

With love, 
The Polks 

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

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 

Hospital stay #3!

Anabelle's GI decided that it was time to switch her from a G-tube to a J-tube.  Her reflux was so bad that sometimes she would turn blue. No good. 

July 12th we went in and had them switch it out. With a G-tube the tube just goes into the stomach, very easy to switch out for another. With a J-tube it's a little more tricky. 

First, to place it she had to be put under. An Interventional Radiologist placed it. Basically they used a X-ray machine that took current and live pictures. I think... I'm still fuzzy on how they did it. It was all very short notice. It was done as an outpatient procedure. Well. It was meant to be. 

We went in to the hospital. After much confusion regarding size, procedure, etc etc.. We finally went to the room. I was able to sit by Anabelle and kiss and talk to her until she fell asleep.. Until they put her to sleep. 

July 13th. The entire night she had been extremely fussy. Couldn't sleep. Her tube site (on the outside) leaked a few times. I just figured it was because they had just messed with it. But by morning I knew it just wasn't right. She had been trying to sleep. But there was just something preventing her. I thought I was overreacting, like I tend to do. So I called the on call pediatrician. He suggested I take her in to see them. So I did. Her doctor wasn't sure what it was. She said to take her to the ER and have them Xray to check the J-tube placement. So me and little miss Ana were off to the ER. I really hate going to the ER. Not only due to the long waits, germ filled people, people who don't need to be there, etc etc. But also because most of the nurses and doctors have no idea what to do for her. They usually have to call in a doctor who has already seen her before. And also because I have to explain Arthrogryposis to almost everyone, patients, nurses, doctors... I don't mind spreading awareness, however, when we are in the ER it is usually because she has some issue and I don't want to explain it 100 times. Or explain that no, she just has leg casts, not a spica cast. No, they are not to bring her legs down or relocate her hips, they are to bend her knees. The tubes you see are her feeding tubes. Nope, the only thing she takes orally is her binkie. *sigh* Sorry, it's just exhausting. More so when she is crying the entire time. 

What was I trying to get at again? Oh yeah. So we get back to the ER 'room'. They actually just gave us a gurney in the hallway. The nurse was nice and after triage-ing us took us back rather then sending us out to the masses again. 

The doctor took his time seeing us. Then said that he will have to confer with the pediatric intensivist, then get back to us. Meanwhile Ana's tubes are filling up with yellow... stuff. The ER doctor has no idea what it is.. Her bag had about 40 ML's. (just over an ounce).. What is going on!?! 

So finally after a few hours and and xray showing things are in place, he comes over and says that we have to go upstairs and they will figure it out up there. And as I should know, this won't be able to be fixed as an outpatient. Um, excuse me? I did not think this is the path we'd be going down today. I hadn't eaten yet because I thought we'd be home after her appointment with her pediatrician. I didn't have my purse, extra diapers, food for Ana, nothing! 

After a good chunk of time, the PICU (Pediatric ICU) doc sees her. Says she needs an IV because we haven't been able to feed her and she's dehydrated. FUN! It is beyond hard to get an IV started on this little lady. I honestly lost number of how many attempts were made. The doc said if they couldn't get one soon they'd have to do something where they stick the needle in her bone... I don't remember what it was called, but it sounded horrible. He was just trying to avoid putting her under anesthesia. I think an hour after starting, and about 5 people trying later, he finally got one in her foot. We got the IV started. But still no food.

In the end they think the balloon was just inflated to much for her little body. They believe it kept slipping and blocking things it isn't suppose to, causing food to come back out, and great pain for Anabelle. Also, her GI told us that they used the wrong J-tube. They were suppose to use a low profile J-tube, which would enable us to be able to hold her chest to chest with ease, have a medicine port closer to her so meds got to her faster, and not have a tube sticking out that can get pulled, wallow (again), etc. The first few days she was miserable. She was throwing up, non-stop crying, not sleeping. Then they figured her feeds where to much at once for her. So for about a week we played with her volume. The PICU doctor was threatening we'd have to use TPN. Luckily her GI is amazing, and has a few tricks up her sleeve. Typically babies eat 20 calories per ounce, however, she's bumped up to 45 calories per ounce. Unfortunately that isn't enough. So we've added a few medications to help. A few that are not cheap and not covered. Even with all of this she is still irritable. The GI has told us she thinks it's now because she is anticipating reflux, discomfort and/or pain, therefore she cries. The PICU doc thinks it's something GI related. So since no one can agree and figure it out, she is temporarily on Ativan. Awesome. My four month old is on an anti anxiety med. I have mixed feelings about it. And question if it is the right thing to do. 

After 13 days, they finally let us out. She still needs to gain to be on the low side of normal. Another reason they started Ativan. If she is fussy and crying all the time, she is burning calories. 

Oh. And today we meet with genetics. I thought that since we had an amniocentesis and microarray done that they wouldn't have much to tell us. Boy was I wrong. In short, he wants to do a muscle biopsy. And he was upset that they didn't do it while they had her asleep for this last ordeal. So in a few months they will put her to sleep for the fourth time and take a piece of her leg muscle and do a battery of tests on it to search for answers. The genetics doc said he wants to give her a break since she's been through so much so far. Thankfully!! 

And! I go back to work in one week. YIKES! Luckily I think we have everything for her in check. And hopefully we can get some nursing set up soon to help while I'm away. It's been a long (almost) 5 months. And I know it's just the beginning. I'm just happy that she will get a break for a little while and hope that she can just relax and grow and be happy :) 

It's tough to think that my little baby isn't healthy. It's hard to say that she is special needs. I always say that all I want for my kids are to be happy and healthy. And it's tough when I don't know if or when Anabelle is going to be healthy. Where we don't have a page full of specialist phone numbers, and have a list of meds she is or has taken, or tons of medical equipment laying around. I know things will be ok eventually. It's just hard at times to admit that right now they are not great. Thanks for letting me vent :):);)

With love, 

The Polks

Oh Mic-key you're so fine!

You're so fine you blow my mind! Hey Mic-key! 


Hope you get the song reference. :)


I'm getting tired of this feeding tube now.... If you don't know, they type of feeding tube Ana has is called a 'Mic-key button'. We've had trouble with granulation tissue, leaking, kids accidentally pulling it, problems traveling, clogs, and then Saturday morning at 5:45 am the balloon popped and it came out! You can imagine I panicked!!! I know I know. The book says 'If the balloon comes out, DO NOT PANIC!' No lie. 


So I try to gather my beans. I try to put in her back up tube. But of course I can't find the jelly. So Kyle runs to the store. We get it all set up. Then we it all set up. I can't put the darn thing in, I think I'm too scared to hurt her. Luckily we had a foley and I was able to get that in easily, but not able to inflate the balloon. See, with the button and the foley there is a balloon on the end of them. It helps keep them from slipping out, or going to far in. So I call her surgeon's office and they say to go to the ER. So I go. And wait. And wait. They put it back in. But they have to do an x-ray before allowing me to feed her because they want to make sure it's in place. So we wait. And wait. All the while she isn't eating. In total she waited about 3 hours to eat. Which is a big stretch for her. She is literally ALWAYS eating. She was mad at us.
But all in all, she is fine now. The Mic-key's are suppose to last months, and this lasted us just over 2 weeks. My faith in them has dropped significantly.


This week we've had a few important appointments. Monday we meet again with her GI. She is pushing us right along to have her switched from a G-tube to a J-tube. Again, the difference is a G-tube feeds right into the stomach. A J-tube feeds right into the small intestines. With a G-tube, if she isn't absorbing the food fast enough, it just sits there in her stomach ready to come up any given second and give her reflux. The J-tube allows us to bypass this step, and she still gets everything she needs. Later when she shows that she's grown and is ok, we can go back to the G-tube, and eventually no tube! :) 


I called today and they finally got the J-tube in, so tomorrow we get to go in and swap them out. It's an outpatient procedure at the hospital. That is, if all goes well. I'm not anticipating any issues, but can't rule them out. They do have to take her to O.R., they do have to put her under general anesthesia. They do NOT have to make any new cuts. So technically it's not a surgery. Her surgeon said that a surgeon won't even do the procedure, it'll be a radiologist or something. Gah. Just a bit scared. She doesn't do great with anesthesia or narcotics. And the worst feeling is handing over your baby to be taken away and put under. I hate it. 




Long story short, I think things will start getting better. We had an appointment today with another doctor. Not really sure his specialty still.. But basically he sets up care for everything! He is going to help us get CCS, because we were denied, he's going to help us with therapies, and much more. Just kind of guide us through the systems. We've been very very lucky though. We've had amazing doctors thus far. A few little hiccups, but they all have Anabelle's best interest at heart, so I can't ask for much more. 


Wish us luck and send prayers, good vibes, thoughts, and mo-jo our way tomorrow please! We get to the hospital at 12:30, and she's scheduled to go back at 2:30. Thanks everyone! <3


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

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