Deer Room!

There has been so much since my last post. Sorry I haven't updated in the last few days, it's been busy. 


I can proudly say Anabelle is done with IV's for now! She got her PICC line out Tuesday night so she is totally off TPN and lipids. The only thing she is hooked up to now are her leads, which monitor her heart and breathing. She is doing ok with eating.. she isn't eating as much as they would like her to, but it's not horrible. At least not bad enough to have to put a feeding tube in. They need her to eat 130 ml's per shift just to avoid dehydration and what not, but she actually should eat 200 ml's per shift to thrive and gain weight. I think she is eating about 150-170. Also, they've switched her to add lib on demand feedings, which means she eats as much as she wants when she wants, (just not past 4 hours). It's the last step in the feeding ladder. AND big big news! She got moved today! We walked into the Koala room, and she wasn't there! It was weird because we called to check on her before coming in, and her nurse didn't even mention it.. I guess they moved her late last night/early morning. But she is now in the Deer Room :) She has two roommates now, and they happen to be twins. It's super cute, a brother and sister. She doesn't have to move all the way down to the Bunny room to be discharged, but it's nice seeing her actually move away from the intensive side of the NICU. It's nice to actually see the progress she has made! 


I got a call from cardiology today regarding a 6 month follow up. They mentioned something about a shunt, but she doesn't have one, and I just woke up so for some reason I thought they were pediatric surgery. I asked her nurse about it today, and she wasn't sure either. But she said she still hears a small murmur. Cardiology came by awhile ago and had an ultrasound done and said it looked fine. I'll have to follow up with someone tomorrow and figure it all out. Also, we have a follow up two weeks after discharge with surgery and  orthopedics at UCD and Shriner's. 


We toured Shriner's today. That place is awesome. They make all their braces and whatever she might need later right there on site. We got a tour of the area, and it's pretty cool. It's also awesome that they have a lot of things for our older girls there too. They are of course focused on Anabelle as the patient, but also focus and realize that it's a family event. They have an outside jungle gym, basketball hoop, & grass area that is totally enclosed, as well as a big section of toys for them to play with, AND they have volunteers  who organize crafts and other fun stuff for them to do while Anabelle is busy :)  They even offer a classroom and schooling, with two full time teachers! Also, when she gets to school age, if needed, they go in ahead of time and explain to her class any extras that she might need and answer questions so she won't feel awkward or have to answer the questions herself. That I think is an awesome bonus! 


They are still looking at Sunday/Monday as a discharge day :) I just hope she continues to eat as good as she needs to. I am VERY ready to have our baby home. It will wonderful to have all of our family in the same room at the same time! 


With love, 
The Polks

OH MY GOODNESS!

Today Anabelle showed what a true miracle she is! She is being bumped up to 40 cc's a feeding tonight, getting off of her TPN (the liquid food she was on for a few weeks), and so so much more! They said the will keep her central line open for a while, but may be able to take it out tomorrow!! They did her hearing test today, they are getting her car seat/bed situation figured out, they are getting all the appointments set up for after discharge, etc etc, which all means that we are super close to.. drum roll please... Anabelle coming HOME!!! They NNP (neonatal nurse practitioner) meet with me today. She said that we should expect to room in (which means we spend the night at the hospital, like a test drive) by this weekend at the latest! They do that and then it's discharge. I can't explain how excited we are! When our primary nurse was explaining that we might get to take our baby girl home within days, I just cried! I mean, I'm not even getting to take her home yet, but just the thought! :) 


I have prepared mentally for months, but the last 20 days have been rough. At the same time I am so not ready to have her home! We need to do some baby shopping ASAP! We kinda postponed a little to long... and with her advancing so fast it's caught us by such surprise, we are soo not ready for her, as far as baby stuff goes. I mean, we have stuff, just not everything we need :) But regardless, we have diapers, clothes, and a place for her to sleep. I think we will be fine. I just freak out because she doesn't get to come home with the monitors to tell me how her breathing and heart is doing. Even though it's been fine.. It's just reassuring. 


Ok sorry, enough rambling. I'm just so excited, and scared! My thoughts are racing with what to do. 


I'll be sure to let everyone know how things go tomorrow! The NNP said tomorrow will be the true tell all day! I mean, that could be incorrect, but I can't help but be excited! 


With love, 
The Polks

food food food

Anabelle is kicking butt at this whole eating thing! Today she started eating 30 cc's, which is a whole ounce :) I can't believe how fast it's going. When she gets up to 40 - 45, that is considered a whole feeding, and if she shows that she is tolerating it, then she gets to come home! 

Kyle and I were reminiscing last night about our life before Amelia was born, since in one month she will be four! I can barley remember our life before our beautiful girls, and I wouldn't trade it for anything. We are truly blessed. It's just a bit difficult finding a balance between everything. I feel like I'm spread a little to thin at times. Like today, Kyle was awesome and put the girls down for a nap, then headed off to the hospital to see Anabelle. I planned to take a nap while the two were down too, but as soon as Kyle left Amelia walked in. I even asked her if she is ok to watch cartoons on our bed while I took a nap. She said no, she wants me. BIG guilt trip. I felt horrible, she just wants to hang out with me! So of course, what else is a mom to do but hang out with her little babe!? I just need to figure out how to give everyone the attention they need, but still remember to eat and drink water, and sleep every once in a while :) 

Yesterday Anabelle had a bunch of visitors! It was the first time that a lot of them got to hold her. And the first time a lot of people saw her without a bunch of her tubes and cords :)

Auntie Jamelle

 & her girls! Haley & Ellie 

 Grandma!!

I just can't wait to hold our little girl at home! Soon I know, but not soon enough! :)

With love, 

The Polks

No going back now!

Thanks to Kyle's mom, Cindy, we were able to be at the hospital early today. She watched Amelia and Allison last night. We got to the hospital just before 11! I know that's not really early, but... for us it is! Anyway, they started her on breast milk today at her noon feeding. Kyle did her first official feeding :)

She is at 10 ML right now, and they will slowly go up as she shows that she tolerates it. I don't know if you know, but 10 ML is a teaspoon, literally... It's nothing, and it takes her 3 seconds to chow down.. But it seems to do the trick, but I hope she can advanced soon! 

I also got to give her a 'bath' for the first time today. Not her first bath... but first done by us. Cindy helped too! :) It was just a sponge bath, and she didn't seem to like it to much. Either that or she was hungry. 

Besides that, not to much new. A NNP (Neonatel Nurse Practitioner) came by today and just meet us and whatnot. When we asked for an estimate for when we can expect to take Anabelle home, she said she couldn't tell us. It depends on how she does with feedings. It could be anywhere from 5 days to a few more weeks. Maybe more.. So hopefully it's on the shorter side! I can't wait to get her home. At the same time, I'm terrified! She is so small, and not like our other two girls. I'm just nervous that things might not go right with her belly, and we miss a cue. And she won't have her monitors telling me just how good she really is doing... It's just scary. I want her home, but I want a nurse here too! I know I know.. It will all be fine and there will be nothing to worry about. She won't come home to early, the nurses and doctors will make sure she is ready.. But my head is just filled with all of the 'what if's' there could be. Ugh! 


Oh! I'm not sure if I've posted this before, but Anabelle has been held by so many people now! :)

Grammy

 Auntie Sheree

 Josh

 Auntie Mel

 Auntie Leah

Oh boy, hopefully she will get to come home soon! I can't wait to have her here so we can hold her whenever we want!!

Finally!!!!!!!!!

Wonderful news!!!!! They gave Anabelle a suppository today and she pooped! So now they have started giving her 5 CC's of Pedialyte to see how things go. I asked two nurses and one said they will give her Pedialyte for maybe 24 hours, maybe less. Another said maybe a day or two. Then she will get to start on breastmilk. We got to feed her for the first time today. :) It was only the Pedialyte, but still. She did so good! She has no problem eating from a bottle, which is awesome because if she did have an issue, then they'd have to put a feeding tube in. But look how good she is doing! 

 Her third feeding, but our first time getting to do it <3

Oh! I forgot to mention. I found a bunch of legwarmers and knee highs at Target today for her :) And I think I have figured out what kind of clothes will work best. Anything that buttons down the front. It will get old fast, so I will still have to get creative and make some things, but it will do for now. It's still hard to find clothes for her while she has her PICC in her hand, because a lot of things don't work with it... but they manage to find her cute things from their supply. I just love UC Davis! Oh, and she got a new roommate today. She use to have a cute little girl, and today she got moved :( Now she has a little boy, who isn't so little. I think he is just a normal sized baby, but after looking at all the tiny babies that are in the NICU, he looks huge! He was just transferred today, so I hope his family is as nice as the last family. 

Until tomorrow! 

With love, 

The Polks

One step closer!!

Today we came in and Miss Anabelle had her repogule out and is off the oxygen monitor!!! Less tubes and cords! YAY!!! The repogule (I'm sure I'm spelling it wrong) is the tube going down to her stomach and sucking up all the gross stuff. Well, it's not gross anymore but just normal spit, and that's why she got it out today. Now she is only attached to her PICC and to her leads for her respiratory and heart rate. So it's really only three total tubes and wires when I get her out to hold her!! And there is nothing attached to her face, which is awesome because we haven't seen her without something attached since the day she was born and before surgery. I can tell she really likes it though. It's a lot easier for her to suck on her binki and move her tongue around. We are still waiting for poop though... The surgeon came by yesterday and did a rectal stimulation. He said that it usually helps get things moving, and he sees results in 5-10 mins (typically). Of course Anabelle isn't typical so over 24 hours later, still nothing. He came by again today and said she could have her repogule removed and hopeful that will help, but if not in another day or two he will order a suppository. We will see... 


Also the physical therapist hasn't come by yet to show us what to do... I am just hoping that she will come by soon so we can start doing stuff.. Although her movement is so improved! We've noticed that her right side has a lot better range and movement, and her left seems more contracted. But both sets of fingers seem to be relaxing more. So encouraging! 


So a nurse in the NICU runs a parent group every Thursday for us to gather and just talk. Talk about whatever. I went today. It was nice.. Just being around other parents that know what it's like to be in the NICU long term and understand how crazy it is. Just being able to relate. We all have different issues and problems with our babies. I honestly kinda felt guilty because the majority had premies with big health issues, mostly breathing. And Anabelle is doing so great with breathing now.. and as long as she poops then we know she is fine, we just have to wait. 


Ok ok ok. Now for the real reason of the blog. PICTURES!!

I know it seems mean, but I love pictures of the girls crying.. I think it's kinda cute! 

 Auntie Mel

 Amelia's first time 'holding' Anabelle :)

 Goodbye repogule!!!

 I don't think she's use to the camera yet...

 Oh yeah, and look at her range!!!

MRI results!

This is a little delayed, but we have the results from the MRI. The doctors said that her brain and spine look just fine! Which is awesome and amazing!! They also confirmed they can't see muscle in her upper extremities. Well... we will see... I know Kyle and I have seen her move her right arm, and her nurse has seen her move her arms too. I know she will end up proving them wrong :)


We also had an orthopedic consult yesterday. It was more then I had thought it was going to be. Usually consults are bedside and it's just whoever that specialist is. This time we went to a room, and it was the orthopedic doctors, Monique (her nurse), another nurse or something like that, two nurse practitioners, our case worker, two orthopedic doctors, and then a regular doctor... I felt a bit overwhelmed... Anyway, the orthopedic doctor said we can start 'passive range of motion' therapy while still inpatient, but just on her legs. She can really move them down, she just needs some help. They said we are going to wait until we get to Shriner's until we do any splits or casting on anything. The social worker also said they will organize which ever car seat we need, if it be a car seat or a car bed. They will arrange with Shriner's and see what we will need and how to get it. 


Everyone has just been so so wonderful! They think of things and get them done (usually) before I even think about them. And they have been so nice about everything, and very supportive. Willing to answer all of our questions, no matter how silly they are. They of course have been amazing with Anabelle. But they have also been so helpful for us and all of Anabelle's visitors, whoever it may be. 


I couldn't imagine doing this anywhere else. 


With love, 
The Polks

The big wait

I'm not sure if I've really explained it... But currently Anabelle isn't eating. She is getting all of her nutrients and what she needs through her PICC line, and it's not milk, but it's something called TPN. And it's not a bad thing. She just can't eat until she poops. I know it sounds silly. But that will show the surgeons that everything is working properly before shoveling down milk into her intestines before knowing if they properly work. Kyle is still confused by the process too. You might ask, 'If she's not eating, how can she poop?' Good question. The doctors say she still has stuff in her intestines from when I was still pregnant. So since she hasn't really eaten, and won't until she poops, the nurses say that she will most likely get really fussy. Luckily she really likes her binki, so hopefully that will take the edge off... Only time will tell. We've also told the nurses that if she does poop, please call us! Day or night. If she poops, she can eat. As soon as she starts eating, and shows that everything is working right, the sooner she gets to come home! 


I'm not sure how other NICU's are set up, but the rooms at UCDMC are different animals. I think I've mentioned that we are in Koala before. Well, today they mentioned that they were going to move us to the bear or deer room (again). But today they had it set that it would be before 7 (shift change). Then around 4 or so they nixed it again! They said that they had some admits and discharges so we just get to hold tight. I mean, I like the Koala room... I just want to move so I know we are on the right track to home!! 


But other then that Anabelle is doing awesome!! Today she was awake for almost the entire time we were there. About four or so hours. She took little naps in between.. but she was so alert and awake for most of it. The most she has ever been. It was awesome. I love when she is awake because it just shows me that she is ok, and will be ok. I don't know what it is, and can't explain it... She is just so so strong. I love her so much! Just thinking about her makes me want to rush back to the hospital and hold her :( I know she is where she needs to be, but I just want her home so I can cuddle with her whenever I want! Some day... Hopefully soon! At least she is ok and doing awesome! :) Can't want more then that


With love, 
The Polks

Pictures :)

Here's some pictures :) (Sorry, there's lot, but I couldn't just pick a few!!) 

Daddy with his little princess

 You can see the pictures Amelia and Allison made for Anabelle :)

 Little monkey :)

 Grammy (Kyle's mom) holding Anabelle 

Mohawk!

 Her eyes are ever so slightly open, just like daddy!

 Her new digs! Anabelle's new crib! 

MRI... maybe

Today has been a rough day. Janelle had the girls (again :) ) so Kyle and I were at the hospital early. I don't know why exactly, but it started out rough for me. I don't want to cry by Anabelle's bed, so I kept choking back the tears. She was suppose to have an MRI yesterday, then they pushed it back till today. So Kyle left to pick up the girls and I stayed. We wanted someone there through the MRI. They said it would be a whole body MRI that could take between 2-4 hours. Scary... But then one of their machines broke, and now we are still waiting. And now they want to split it into two sessions, just because 4 hours is a long time for her to be away. Oh but good news! She was able to move from an incubator to a crib! She's maintaining her own body temperature :)  


I was under the impression that the MRI was ordered just to see what is going on and where things are, etc etc. But, I learned today that it was really ordered because they did a previous test that showed she doesn't have muscles/nerves in her arms and hands. So today a bunch of neurologist came by to discuss and review. They told me the results of the test, and explained what this means. They said that they are going to look at the MRI for any possible spinal cord damage. 


We knew this wouldn't be an easy road. However, the whole time we didn't know exactly what to expect so we held onto this thin slice of hope that everything would be ok with some surgeries and then she'd be fine! Now, knowing that this isn't the case, and things will defiantly be a challenge, it's hard to swallow. Luckily Anabelle has an amazing nurse. Her primary nurse, Monique, was there today. She saw that while the neurologist were talking to me that I was having a hard time, and came over. When they left I broke down. She was there to comfort me, even grabbed me some tissues. It's people like that that you want to have watching your baby when you can't be there. We got lucky. 


Oh, and they had a cardiologist look at her and they did an ultrasound today too. Someone said they heard a slight heart murmur, but everything looks good. Also, she can move out of the high intensive care unit as soon as there is room for her in the deer or bear room :) Yes, UCD has animal names for all of their different levels of care. Right now she is in the Koala room. 


Ugh. I keep telling Kyle I wish someone would write a handbook on how to deal with all of this. And how we are suppose to balance our time between home and the hospital?? That's been one of the hardest things.. 


With love, 
The Polks

Welcome Anabelle Grace!

On March 1st, 2012 we welcomed Miss Anabelle Grace!


She is such a strong, amazing, beautiful little girl. She has these big dark blue eyes and long dark hair. These past few days she has showed my and Kyle what life is all about. 


This past week has been a whirl wind. I cannot believe it has already been a week since Anabelle was born! I will give you a brief recap of these past day, only because if I go into detail it would make a novel. Oh! And when she was born she weighed 5 lbs even (that includes a little wet gauze used to wrap her bowels). We still don't have a length just because they're not sure how to really measure her.. 


Anabelle was born at 11:44 am. It was amazing! Both Kyle and I were able to see her be born. It was scary because the cord was around her neck a few times, but she was ok. I didn't hear her cry until she was in the other room. She went into surgery around 2-2:30, and was out around 6. The doctors were able to fit all of her bowels back into her tummy in one shot! 


I was finally able to see her around 8. She was on a ventilator and had so many tubes and wires and machines attached to her I couldn't even tell you how many there were. I cannot describe the feeling I had. Over the next 4 days she stayed on the ventilator and morphine. The worst part was she would have apnea spells. Times when she would stop breathing. Mostly when the nurses would have to move her, or when doctors were prodding at her. It caused her so much pain that she would clench up and just stop breathing. This would cause the nurses to have to bag her. It was terrifying to see. I only saw it twice, but they did it a lot more then that. It wasn't only scary, but in a way not good for her. Every time they bagged her, it put air in her belly which made it hurt more.. a catch 22.. 
They had to put in a PICC line. Since it's hard to find good veins on her, they thought they might be able to do it on her head. So.. they shaved almost half of her head. Unfortunately they weren't able to do it in her head and ended up just putting it in her hand. I was upset at first about her hair, but happy they were able to find somewhere good enough to put it. 
Then on March 5th, (my favorite day so far!) she showed that she would behave off of the ventilator and not have any more apnea spells. She was breathing just fine by herself on the ventilator, they just kept it in because of the apnea. She was also done with her morphine and was starting to wake up more. Then, a little while later, we were finally able to hold her!!! When I first held her she was wide awake and looked at me. I cannot tell you how monumental this moment was. 
Over the past week, she has had a few x-rays and many consults. Tomorrow or this weekend she is going to have a full body MRI. The orthopedic doctors have decided to refer us to Shriner's for her orthopedic care. They will start about 2 weeks after she is discharged. I think they have never seen a baby like her and are just not sure exactly what to do. I know Shriner's is amazing and will be able to handle her. Otherwise, she is doing awesome with recovering from her surgery. A geneticist also stopped by and looked at her quickly. She said she is pretty sure it's Arthrogryposis but couldn't say for sure. She said she will have to come by later and give a better exam. We are just waiting until she poops for her to be able to start eating! We told her nurses that no matter what time of day, if she poops, please please call us. I don't think I have wanted to know if my child has pooped so badly, and I don't think I've ever been so focused around my baby pooping. Yesterday Kyle heard her toot, and that was exciting enough! 


Amelia did get to finally see her on the 6th. I think she was overwhelmed and not sure what to do. Kyle asked if she wanted to touch her or give her a kiss since she has been wanting to meet her so badly. She said no, that she just wants to kiss her at home. It's so hard to explain to them what is going on. I tried to explain to Amelia that there is nothing to be scared of, and tried to explain all of the machines and what everything did. But still, it's hard. 


Everyday she is doing better and better! I will try to update daily or every other day because every day holds so much. Thank you everyone for your well wishes, prayers, love, support and concern. Thank you for your understanding. It has been wonderful to have all the support through all of this. Thank you. 


And of course, here are some pictures :) 
(I don't have her first pictures, but here is what I have chronologically) 

 Her shaved head :(

 Putting in her first clip 

( Ignore my face) My first time holding Anabelle! 

 Dad's second time holding Anabelle!

Also, I will try to keep everyone up to date. So if you email, facebook, call or text me and I don't get back to you, please don't take it personal! Just see if I've updated the blog, and if not check back later. If you still haven't been updated, I will try to let you know. Thank you for your patience as we figure out our new life :)


With love, 
The Polks