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

Holland

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo

David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandt's.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

I learned that this is an old poem. But, I think it will outlast time. I am very fond of this poem. It speaks volumes to our new life that we've accepted. 

I typed out a few paragraphs of how sad and upset I get at times because I realize the difference in development between our older two girls and Anabelle. Then quickly deleted it. I realize that ever so often I get caught up in feeling sad because of the missed milestones.

I need to refocus my attention and energy. Focus on how far she has come.

So much farther than I ever thought was imaginable. Yes, the road so far looks like it needs a little fixing, but we're getting there. 

Unfortunately Anabelle has pneumonia again. They said it was viral again, but gave her antibiotics. Last time they said it was pneumonia and antibiotics would do nothing. Slightly confused. And this time she is much worse. Luckily they discharged her from the ER and didn't admit her though. We have everything she would need at the hospital at home, minus a doctor and nurses obviously. But we have a pulse ox, oxygen if needed, apnea monitor, etc. She is non stop coughing, congested, raspy from crying and coughing, and plain old beat. She can't sleep very well, but she wants to oh so much. It's pathetic. 
Our older two have had this bronchial cough for a month or so now. They did 10 days of antibiotics themselves. But it hasn't done anything. And their noses won't stop running either. I'm curious now if they have some sort of pneumonia too, but their doctor isn't open until Monday. 

Even with all the coughing and not feeling good going around, the girls are still smiling. I just love them. They remind me that it's all worth it. 

Last night before we knew Anabelle has pneumonia, she was just non stop crying, wouldn't sleep, etc. I had no idea what was going on. It was my turn to watch her that night. Kyle and I switch some weekends so one of us can get a good nights sleep and stay sane to help balance out the others lack there of. But this night was horrible. I was up with her until 1:45, then she slept for 3 hours. That's it. Around 1:00 I woke Kyle because I was loosing it. She kept choking on her saliva. No matter what I did she wouldn't sleep. So we decided to take her to the ER. I didn't feel comfortable with just one going with her alone in the back seat due to her choking, so we woke Amelia and Alli, and all loaded up. About 3/4 of the way there we realized she was OUT. Totally asleep. For those that are not familiar with the ER... If you take a baby in who doesn't immediately look like they are sick, they will think you are a crazy overreacting parent. They even told me I overdosed her once.. Yeah, that nurse got a piece of my mind.

Anyway. Since she was out, we decided she must have just been tired and now she is asleep and we'll go home. So we get home, she sleeps until 4:45. I try to deal with it. I don't. I lost my cool. I fought with Kyle (before and after our attempt to the ER), I couldn't figure out why she was acting this way and got mad with her. I realize it was very illogical to get mad with a 8 month old baby. But I did. My tone with her was not a nice one. And today I feel like I deserve the worlds worst mother award. Kyle took her into the ER this time, around 6 AM. They got home around 1:30 pm, and I felt like she was mad at me, like she didn't want to look me in the eyes, let alone in my direction. It could have been that she was just tired, but it didn't feel like it. It felt as if she was holding a well deserved grudge at me for loosing my cool with her last night. It is defiantly my lowest moment as a mother so far. I mean, I get upset with the Milly and Alli, but they are older, they can talk and tell me what's going on usually.. But to get angry with a baby, and come to find out she was acting like she was due to pneumonia! Yep. I earned that award..




Hopefully this ugly bout of pneumonia will only last a few days. We go back to Philadelphia soon, and I'm a little nervous that her doc will say she can't fly if she is still sick. Obviously I don't want her to travel if she is sick either... I just want things to run smoothly. I'm always worried about when that monkey is going to throw his wrench in our plans. Dang monkey is always running our plans...

And thank you everyone for the continued love, support, good vibes, etc. It means the world to us. Honestly. I get a little teary when I think about how many people have helped us get to where we are today. Thank you.


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