Feeding Evaluation

Sorry, time seems to slip away from me. 


Anabelle had a feeding evaluation yesterday, it was a long one.. a 2 hour appointment. The speech therapist said that she is at a high risk to have an acute life threatening event at home... Mind you, this was yesterday, and I had to return to work today... 


Her issue is she is having problems breathing while eating. She can't seem to get the 'suck, swallow, breath' pattern down. Camille, the speech therapist, suggested we breastfeed when possible because she seems to do slightly better then with a bottle. She also gave us a bottle they usually use for kids with cleft palates. It's a weird looking thing... Camille also wants us to feed her every 2 hours during the day. Listen to this.. So we are to feed Anabelle, and let her try to eat for 40 minutes, but no longer. Then have her in an upright position for another 20 minutes. So that's an hour, and then we have an hour to get something done, and start again. Kyle was at home with all three girls today, and this is not going to work. Not saying he's not trying, but with both of us at home it's hard! 


Opps, got side tracked. Anyway, Camille thinks Anabelle is at a high risk for aspiration. She is trying to get us into our ENT (ears, nose, throat) appointment faster then the 15th. ENT will be able to see what the issue is behind her breathing problem. They can determine if it's just as easy as some extra tissue in her nasal passage, or if it's bigger. They will also determine if she should have a feeding tube or eventually g-tube. The feeding tube is something they only like to do for a max of 6 weeks, and a g-tube means another surgery. If your not familiar with surgeries, when they put you under full anesthesia, your bowels go to sleep, kinda. So that makes me nervous... Plus it's another surgery. But if it means that she won't aspirate, and will get the feedings she needs to, then be it. She also wants us to have a moderate barium swallow study, sleep study, meet with pulmonary, get set up with a GI, and have Kyle and I go through Infant CPR, just in case...  And then come back for another feeding eval in two months to see where we are. She also thinks she might have sleep apnea... 




I know it will all be fine, I just want to get there! I hate the waiting and politics that are behind all of this. Camille was frustrated that the ENT changed Anabelle's appointment from urgent to non urgent. She is calling the doctor himself and seeing if she can get him to understand and fit us in somewhere. It's nice to have someone in our corner fighting for us :) 


Other then the feeding eval, we got her cast changed this week too! She was starting to develop a little pressure sore on the back of her ankle, so they put a band-aid and extra gauze, so her legs look really big this week. And they are coming down a bunch, I think the weight it helping. 


Well she's hungry, so I will update once we get more done.


With love, 
The Polks

Ranting and Venting

*Warning: This post is a big, long, fat vent. Basically me feeling sorry for myself. You've been warned*

I am so sick of insurance politics. I dislike regular politics as it is... As I type Anabelle is laying next to me wide awake. Just a few minutes ago she was sound asleep. But then for some reason she had difficulties breathing, and was awoken by them. Now she has to try to fall back asleep, while still not breathing right. You might ask why am I typing instead of doing something to help her. There isn't anything I can do. I think there is something wrong with her nasal passages, making it difficult for her. I've been trying to get her in to see an ENT (ears, nose, throat doc) for a month now, and will have to wait another few weeks. Luckily we do have a feeding evaluation for her on Wednesday, and maybe after they see how badly she is effected they can put a rush on the ENT consult. At least that's what I've been told. I'm just so sick of it. I mean, I pay a lot of money every month for insurance. Granted, since I work for the company I don't have to pay close to what others do, but still.. it's a pretty penny. And when I need them, they bail on me. I have had healthy kids, I've been healthy, Kyle has been healthy... and when I actually have to go into the doctor's and use their services, they disappear. OH! And I was suppose to be able to pick up some medicine for Ana yesterday for her reflux, but somehow the pharmacy has zero information about her. And it's the weekend, so she has to deal with it for a few more days. Doesn't she have enough to deal with here people!?

You might also be wondering why I don't apply for public assistance for insurance... well unfortunately, even on maternity leave, somehow I don't quality. Ugh! So frustrated.

I can't sleep because I am terrified that Anabelle will either stop breathing, have a random bout with reflux, or choke on her spit up, or a number of other things... 

I'm just so anxious to get the feeding eval done... She doesn't eat that well with a bottle, and I need to go back to work the day after her eval... Which is terrifying. Also, talking to other moms has helped, but also opened a whole other can of worms for me. They have asked if she has had problems eating, because they see a picture of her and notice her short chin. Without me even saying anything! Their kids have g tubes, or at the very least have had feeding tubes. I'm not a nurse, how am I suppose to do that?! I thought we were out of the woods because she has been breathing and eating on her own, but now I'm worried. 

I've been weighing her at home, and she isn't gaining as much as she should. Actually, yesterday she lost a little.. literally, a little. 0.02 oz. She should gain 3/4 - 1 oz a day. 

It's frustrating as a mom to sit back and wait for doctors to tell me what's really going on. I'm just worried that they will say she's fine, and to go home you crazy lady. 

I think I am having a hard time realizing she isn't 100% healthy and that she is disabled. I know she will be very capable and one smart cookie.. I think it's just difficult to accept that she will face challenges that my other two girls won't have to deal with. The other day I was reading an article about the top 7 things you need to know about a parent of a disabled child. I was reading it, not really thinking. But after I was done, I realized that is me! Each bullet point pointed out some part of my life now. From 'no matter how much sleep I get, I will always be tired', to 'I want to talk about my kid, I don't want to talk about my kid'. There also was a part about being alone. Granted, I have this whole big huge amazing AMC family, and trust me, they are AMAZING! But the article said it best. Sometimes I do feel alone when I see other kids who are not as effected. Again, I know that there are some kids out there who looked just like Anabelle at birth, and are doing awesome. It's just the poor me thing. Sorry. This is my outlet :) 

But Miss Anabelle is becoming more alert every day! She tracks us all the time now. She likes to look at her sisters, and they like to make crazy faces at her. Poor Amelia had to keep her distance today. I thought she had allergies, but after her nap she woke up with a 101.4 fever, so I guess it's something else. It's been tough for her, until she felt to sick to sit up that is. She's in with dad sleeping with a sheet and fan. Her fever has come down too. Anabelle's legs are coming down too! When I have her sitting up, her legs can come down further then a sitting position :) Oh, and Alli is crazy as ever.. She is a little firecracker! 

Ugh... I am excited, but not, about tomorrow. It means I can get things done, get all of my calls in, appointments, etc. But it also means I have to get my calls in, got to appointments, etc...

Thanks for listening! 

With love, 

The Polks                                                                                                                                                                                                                                                                                      

First Shriner's Appointment

Today our oldest baby turned four! It's a mix of emotions... I just can't believe she is already four years old. It's gone by so fast, that it scars me that the next four years will go by just as fast, and I'm not ready for that! But, I am just so proud of her and so thrilled that she has turned out to be such an awesome kiddo. 
Kyle took Amelia and Allison to a Giants game for all of their birthdays. Amelia's is today and Kyle & Allison's is May 1st. A little father/daughter bonding time, which I think did the whole family some good! The girls had a blast. 

Alli at Mission Park before the game

They really do love each other! 

So excited to be at the game!

See what a big girl Amelia is!!

But today was a big day for all of our girls. It was Amelia's fourth birthday, Allison had a fever because she had her shots yesterday, and Anabelle had her first consult with Shriner's. (Allison is doing great now, no worries :) )


Today we meet with Dr. Rab, and he seems like a nice guy. He is however leaving in about a week for a two week period for a vacation in Italy.. bummer, but he said we will be in good hands. He believes her hips are not dislocated, but time will only tell. And if they are, they won't put them back in place because it can lead to stiffness, which could effect her walking abilities. Then he commented on her arms. Same stuff we've already heard. He explained the dimples more, how it pretty much means they're isn't a whole lot of muscle and the chances of it improving isn't great, but we will see. I got the feeling that he was already limiting her, but then he would say that he didn't want to, and we will let her tell us what she can/can't do... I guess we will give him another chance. But then he said that the first thing he thinks would be best is serial casting. I think that's what it is called.. He wanted to do long casts on her legs over a period of 4-5 weeks, with the cast being changed every week. He hope is to get her knees bent, but said it rarely works. Then it sounds like the next step would be surgery. He also said the first 12 months are the most important for getting her into the right position, because after that everything is pretty much where it will be. 
Also, they have a weekly meeting on Thursday mornings with all the orthopedic doctors. They get together and discuss the more sever cases. He recommended that we stop by and do a show and tell with Anabelle and they can come up with a treatment plan for her. 
I can't help but think that her little casts are just too cute! It might sound bad, but if she has to have them at least they are cute! I'm still upset they didn't have pink :( But see, aren't they just too cute :):):)

All in all, it was just a meet and greet and getting casts. I still have questions, but was able to get a lot answered. 


Oh, and we finally have an appointment for a feeding evaluation for next week. Thank GOD! She has been doing so-so with bottle feeding, and I might have to go back to work next week. They had a months long waiting list, but then I explained our situation and she bumped Anabelle all the way up! Finally!! Someone who understands and helps us! We are still waiting for the ENT evaluation. My insurance is trying to deny the auth and get another type of consult done... I think it's to the point where I need to video her when she has problems and play it for them when I'm on the phone.. 


But things have been going ok. I don't know if we will ever figure out a schedule or how to get everything done. I just hope things will become a little  smoother as time goes on. Thankfully we have so much support from other AMC families! All the other mom's I've talked to have given us so much insight and guidance, I really am not sure where I'd be without them! Thank you all!! :)


Oh! And a big thank you to my sister for babysitting Amelia and Allison so both Kyle and I could go to Anabelle's appointment! 


With love, 
The Polks

Photoshop!

It's official, I'm obsessed with picmonkey.com.. just look! 

The balancing act

 The other day I saw another AMC mom post something asking how to balance, well, life. She was asking other mom's who are ahead of her in the AMC game for guidance. I was so excited to see that another mom was struggling with trying to balance life. She too had two toddlers and her third had AMC. I was even more excited to see that veteran mom's explained that you just have to focus on what is more important. As long as the house is live-able, you don't need to focus on it. And try to enjoy your family. It can be easy to get caught up in everything that you forget to stop, smile, and enjoy being a family. 
Lately Kyle and I have been dealing with guilt. Guilt because Anabelle will face surgery, castings, difficulties, and many unknowns. Guilt because we've been so focused on Anabelle that our other two girls and household chores have been pushed aside. 
I have been so focused on AMC and Anabelle that I have pushed my relationship with Kyle aside. I have become obsessed with researching everything and anything AMC related. I try to search every symptom that Anabelle has. I know it's unhealthy. I need to find the balance between taking care of Anabelle and ensuring I am up-to-date on the newest therapy, treatments, etc, and giving everyone else in the family attention too. It might not seem like a big list, but it is overwhelming for me. Add this to pumping, breastfeeding, weighing Anabelle, keeping track of all of this, dealing with insurance, and household chores...I'm exhausted. 
I wonder at times why we were chosen for this life, because right now I have no idea how we are going to survive it. Then I look at all three of my girls and Kyle and am reminded why. I am beyond thankful for each of my girls. I am so thankful for Kyle. He has been wonderful, and I know I take him for granted. 
I think I just need to remember to breath and everything will be ok. Take one day at a time and let go of control over the future. I don't know what lies ahead, so why fret so much over it today? Being a control freak is making this difficult. 
I know all in all, things will be fine. We just need to be reminded that there is a light at the end of the tunnel, and we will get there eventually :)


With love,
The Polks

Videos & pictures

I forget to post these. They are from the hospital. 

This is Amelia's first time seeing Anabelle

Anabelle's car seat challenge 

Her PICC is out! 

Adjusting to the life

Last week Anabelle was off. Just fussy, not eating as much as normal, and not stooling as normal as usual. I called her primary and she suggested to try suppositories, and we made an appointment for yesterday. We tried the suppositories, and they worked. But I wanted to go in just to be sure. I am a paranoid mom as it is, then add actual medical issues on top of it.. I am super crazy. 
So we went to the appointment and I learned a lot. Dr. Hoyt explained that since her movement limited it will be harder for Anabelle to stool as normally as other babies. That added to the Gastrochisis, we will become familiar with suppositories and stool softeners as she gets older. She also suggested when she hits 3 months we can give her small amounts of plain water. That will be a big help. Hearing this eased my worries. 


Anabelle is still having issues eating and breathing. Sometimes it's breathing alone that causes issues. It's not like she is stopping or flat out not breathing on her own, she just makes a lot of noises. Sometimes she will stop for a few seconds though. We are waiting for our insurance to approve an authorization for a swallow evaluation, still. I think she might also have a touch of reflux. I just wish they would hurry up and approve it or do whatever they need to do so we can get her in and make sure she's fine. 


Otherwise we have been great! I think I might live off caffeine for the next few months alone, but we will be fine. Luckily I have an amazing husband to help me! He let me sleep for a few hours straight this morning! Ok, more then just a few, I don't even know how long I slept for, but it was a long long time! Thanks honey! And Amelia and Allison have been good kids too. They of course have their moments, but they are such great helpers when it comes to Anabelle. Today Kyle asked Amelia to hold Anabelle's binki in place while he changed her diaper, and while she did she talked to her and put her hand on her head. I love little moments like that. :) 


My maternity leave is up in two weeks, and I'm anxious as no other. I know Kyle is totally capable of handling the homestead while I work, but I'm not ready yet! I feel so cheated since Ana had to stay at the hospital for 4 weeks. I know I should be grateful for the fact that she wasn't there for longer... I just want to be a little selfish and have some more time at home with her! I might have to take my baby bonding time earlier.. But then I worry about not having it later if I need to be at home with her for something within this next year.. Ugh! Ok sorry, done venting. What I really need to do is think of something I can do from home... Either a job or some type of small business path that I can run from home. I think my mind will be at ease once we meet with Shriner's to figure out how these next couple of months will be played out, and I will plan accordingly. It's just hard to think about working right now. K, now I'm really done complaining :)


These last few weeks have been a whirl wind since Anabelle came home, but I wouldn't have changed them for anything! I just can't wait to see what the next few months have in store for us!! 


With love, 
The Polks 

AMC videos

So I just found this awesome site. It's packed full of information regarding treatment! The videos are on the long side, but well worth it. 


http://vimeo.com/24626314

The first video makes me want to move us out to the East coast...

This and That

I'm sitting here with Anabelle fast asleep on my chest as I update the blog. Kyle is on his way to pick up the girls from my mom's and I'm just relaxing :) 


This past week and how ever many days since Anabelle has been home has flown by! It seems like we've had her home much longer. The girls are still doing wonderful with her. I only think they get jealous when I have to devote my attention to Anabelle but they want it.. Which is reasonable. 


Anabelle is doing wonderful. We had a follow up with surgery on Monday. Dr. Marr said that she has a small hernia where her faux belly button is. He also said that he rarely has to do anything about them, and they go away themselves. He took a picture of her belly and we will do follow ups with him at 3, 6 and 12 months. We did have to do a Glycerin suppository yesterday though :( And if she continues to be an issue we'll be visiting her pediatrician soon.  


OH! And we have a consult scheduled with Shriner's! It's on Amelia's 4th birthday, and if we reschedule then we'll have to wait until end of May unless someone cancels their appointment... I'm sure we can work it out, I just feel guilty. I don't want our other two girls to think they are not as important to us or be jealous because we have to devote so much time and attention to Anabelle.. We'll figure it out, I just feel bad. 


She is still having issues with her nose. I think her nasal passages are just small, making it hard for her to breathe. And it makes it really hard to breathe and eat.. and she gets frustrated while eating and it makes feedings difficult. Hopefully we will hear from her pediatrician regarding her swallow evaluation. If not, I get to call them :)


We're doing good though. We don't have any kind of schedule or routine yet, but hopefully we can fall into one soon. That might make it easier, I just don't know how to make it happen. We never had one for our other girls, so we will survive either way. 


Some days are still easier then others. It's getting easier to dress and change Anabelle's diapers. Her legs are more relaxed so it makes a world of difference. Sometimes she will scream out of no where. It will happen if she is in her crib alone, or if were holding her. I don't know if it's just her normal baby thing, if she is hurting because she stretched and something went the wrong way for a second, or if it's her belly. When she does it in the middle of the night, it feels like I'm having a heart attack because it scares me so badly. I am so excited for the Shriner's consult to see if we can figure out what is really going on. I think her doctor's think I'm a crazy mom who thinks every little thing is something major to discuss.. but that's ok with me. I'd rather be safe and ask a million questions then not ask one and have something actually be wrong. 


OH! But Miss Anabelle has been holding her head up more and more by herself! And she has been turning it more too. She favors one side usually, but she's starting to move her head around to both sides. All in all, she is doing awesome!! She's our little champ <3


With love, 
The Polks

Home at last :)

I am so glad to say that Anabelle has been home for 5 days now! As you can imagine it's been a crazy 5 days, so that's why it's been a while since I've updated. On Monday the 26th we stayed overnight and 'roomed in'. Just to make sure we could handle everything. It might sound silly since she is our third baby, and she didn't have to come home with oxygen or any extras. But Tuesday morning my mind was at ease. It made me realize she is just like our other babies, with the exception that we make sure she eats enough and her GI track keeps on track :) 


Here are a few pictures of us rooming in. It was the first time we were able to hold her without any wires attached!

 It may appear mean, but she was comfortable! 

On Tuesday, March 27th, Anabelle was discharged. She got to meet other big sister, Allison, and we were finally able to be together in the same room, all 5 of us! 

She jumped right into big sister mode :)

 But was so sad when I told her she needed to wait to hold her... 

What else? Oh! We had Anabelle's first regular doctor appointment on Wednesday, and she gained some weight! She was 5 lbs 11 oz! She is still eating like a champ. And her legs and arms have relaxed so much this past month! I can't believe she is already a month old! Her legs now look like she is doing the splits when you hold her in a sitting position. And her hands now get in the way while changing her diaper. 


Tomorrow we have a follow up appointment with Pediatric surgery. I think that the Gastroschisis was minor. Everything seems to be going smoothly as far as that goes. She is eating, pooping, and burping just like other babies! Knock on wood it won't be a concern as we move forward. 


We gave Anabelle her first bath at home too! It wasn't a real bath yet because her incision is still healing a bit, but still... it was a bath at home!

Clothing her has been an adventure. I don't want to bend or twist her the wrong way. I don't know what will hurt her, or what I can do. Every time I change her I get anxious and nervous. It's gotten somewhat better, but it's still scary for me. Even putting her into her car seat is a challenge for me. I think once we meet with Shriner's and figure out what I can/can't do I will be more at ease. 


BUT! On a good note :) Her legs have relaxed so much that tonight we were able to finally put pants on her! I bought some pants that are a size 3 months, and they are perfect! I wasn't sure at first if they'd work, but now that her legs can move more, it's no problem! OH!! And she is finally taking a normal, non-hospital, bottle :)

How could I forget! Daddy was finally able to have all three of his girls together 

And Amelia and Allison are just being goofballs :)

Until the next milestone or significant doctors appointment! 

With love, 

The Polks