Happy Halloween!

So Tiffany gave this cute little outfit to Anne and she even made the bow. Isn't she just the cutest little tricker treater? Her outfit even glows in the dark!I dressed up as a nurse for fun. One day Anne tossed up her lunch all over me (I was soaked). The nurses got me some scrubs so I didn't have to smell funny all day. I thought it would be fun since I am here everyday and everyone thinks I work here. I even get the employee discount on lunch sometimes.The little girl next to us even is wearing her Halloween outfit. Us Mom's thought we were pretty awesome to dress up out little ones. So Anne has moved up to being able to bottle feed whenever she is awake and ready for it! That is awesome. She took her full feed again this morning! Really today and tomorrow should tell us where we are going with her and how she is doing. Without the seizure medication if she starts not doing well with her feeds we will know if that is what it the problem was. If she continues to improve with out the seizure medication it may be acid reflux. Either one can be solved easily with medication! If its neither then she is just improving on her own which is also awesome. We are so proud of her. Happy Halloween!

Another Cougar First Down!

Okay no reason for the title except I thought that when she finished another full feed! Yup so today she had 20 mL then her full 41mL back to back!!! Go Anne. For your viewing pleasure a video of the eating champ of the day. Due to good behavior she gets 4 bottles a day instead of just 2!

I Love Fall!

I love the nurses and staff at our hospital. They really are wonderful and make being here everyday more bearable. They dress Anne up and put little bows in her hair and they even provide fun times for fall. Today we could dip our own candy apples in the cafeteria! Yum! So Anne took about 25-30 mL this morning for her 10:30 feeding. It was a little more of a struggle from yesterdays success but at least she ate. They took her off of the Phenobarbital so it can clear out of her system before they do a real EEG (guess the last one wasn't real it was a machine like an EEG just not as good) on Monday. She is still on the Zantac. So Monday she should get a swallow study and an EEG and by then hopefully we will know the problem. Thought we would know by Saturday but we are willing to be patient for the right answer. Please pray and fast for little Anne this Sunday if you can. We are praying and fasting that they will find the problem.... not that it has to be solvable, just findable then we can go from there.

Another Satisfied Customer!

This is the face of a satisfied baby! Yup sweet little Anne took her whole feed plus some this morning. Her feed is supposed to be 41 mL but there was 46mL in the bottle to allow for drooling which she does a ton of normally.

She took the bottle down in no time and was still awake for like 2 more hours after she was done and she barely drooled! She is currently on Zantac and Phenobarbital for acid reflux and seizures. Which one solved the problem? Is the problem actually solved? Dunno. We will just have to wait and see if she does it again and again and again...

I was ecstatic to say the least! That was the easiest feed we have ever had. No oxygen no problems just good eating. We did thicken the milk and fortify it but that is all.

A Picture Of Perfection

We came in today to find a cute little peach bow and a moe hawk on our little Anne. Don't think you can see the moe hawk that well but its there.
I think the nurses get bored sometimes and entertain themselves by dressing up the babies.

Saw this on a friends blog and loved it. Thought I would share the advice. Thank you Naomi!

Thank You To Those Who Posted

So the other day pretty well stressed me out. Maybe she won't eat maybe she has seizures maybe she needs surgery... made for some sleepless nights. No joke I got up and organized all my freezer milk by date. Didn't reach sleep til 3am. Well, Wednesday Annie the occupation therapist for nursing and feeding babies came and did a consult with Anne and I. She 35 mL from a bottle for that feed. However there is a magic recipe to achieve Anne's perfect feed. We need oxygen, cradle her close with her head above her feet, burp her several time throughout the feed, let her stop and breath when she starts drooling to much, and tell her how awesome she is when she has done a good job. That last one is essential because she doesn't perform for nothing. Last night one of the nurses got her to take the whole feed 53 mL from a bottle! That is huge! Also the head of the NICU took a look at her EEG and said she had no seizure activity and she had a very good sleep pattern. So all concerns from the other day... gone! The therapist asked me why I thought she was doing so much better. Seriously from 3 mL to 35 mL in a day. I asked Andrew to give her a father's blessing and the twitches I was worrying about haven't happened and she started to like eating! As depressed and sad as I get over all this I know we are truly blessed. We have been watched over. So many people have asked after us, people I haven't seen in years. I know there are so many praying for us and putting our name in the temple and looked at our facebook pictures and followed our blog. Sometimes I am prideful and the attention annoys me. I have always wanted attention my whole life but now I couldn't want it less. Anyway, Anne has suprised us again. I need to take more pictures.

Wait And See

So today I asked serious questions of our Dr and got serious answers. Anne has these facial twitches which, although cute, concern me. Her eyes go twitchy and her mouth twitches into a smile. I've heard its normal to be twitchy but I wasn't sure if her version of twitchy was normal. I asked and explained and the Dr seemed concerned they might me seizures. So Anne is now hooked up to an EEG machine to track and see if what she is experiencing is indeed seizures or just normal premature behavior. Also her eating habits haven't improved. Normal babies learn to suck really well around 37 weeks gestation. Anne is due this coming Sunday so she should have at least better than only 2mL suck abilities. She should at minimum be able to do 20-30 mL on a bad feed. That is a good feed for her, a really good feed. So the Dr said by next week if she isn't improving we need to talk about maybe a more permanent solution that would allow her to come home. That solution would be something called a G tube. It would require surgery to put in a tube right on her belly going straight to her stomach. Then we could continue to work on learning to eat but still take her home. So if the EEG comes out bad and she doesn't improve in eating next week will be a rough week. Pray for us. Also, today is a better day than yesterday. Feel free to discontinue membership if yesterday was too depressing.

Hope You Know We Had A Hard Time.

Still here. Today I am discouraged. Anne still can't manage eating. This makes me want to cry. You think having a kid is going to be hard but you never think your perfect little baby will be in the NICU for more than a month, not be able to eat on her own, and on top of that have some ambiguous brain malformation that only heaven knows how it will affect her. To say I am stressed is an understatement. I am so very good at masking my emotion and telling my self to soldier forward. Only maybe two people on this planet really know how much of a hard time I am having with everything. Daily functions are difficult. Waking up is difficult. Watching my baby struggle to learn and still not get it is difficult. Worrying if this will be her everyday for the rest of her life is difficult. She tries so hard and wants to eat so bad and we work at it for hours and then we weigh her and nothing... hours of nothing. Forget remembering to brush teeth, shower, do chores, sort laundry, talk to my family... doesn't happen. My saving grace right now is Andrew. He feels everything I feel. I love him. It hurts when he is having a hard time too. He does so much for me to show me he loves me. I want so bad to make everything OK for him, for Anne. Its hard. I can't. So I'm sorry to all of you who need me to function, because I can't. The only people I can handle functioning for right now are Anne and Andrew. Please have mercy on me and be patient. I'm trying. Most days I do OK but today I can't and that's all there is. For all of you who are so anxious to add notes of encouragement... I know. Don't say it, but thank you. PS I promise I'm not depressed and I still know the church is true and I still have a testimony of the tender mercies of the Lord. Just needed someone besides those two people to know.

Fatter Than McFatterson!

Anne was going for 5 lb today but missed it by one lousy ounce. She is doing really well. Not quite as well as we need her to be but well. She is regulating her own temperature in an open regular bed! No heaters no nothing. So that means we only have to worry about her gaining weight consistently while eating from mom or a bottle. That is all that is holding us back right now.Sometimes it seems like she could care less about food even if its right in her face. Seriously, I can get her to latch on and she will be wide awake and just sitting there. Today it was time to feed her and she was waiting with her mouth open not rooting for food or awake enough to care but letting her mouth hang open like she wanted us to just pipe it in.... she is all about a free meal. Stinker. She can take three feeds a day without the feeding tube (one nursing feed, two bottle). They can be at any of her feed times as long as she is awake and ready and rooting for food. That means sometimes I am only there once when she is ready to go because she seems to be really awake only once while I am there. Good thing she is cute and I like her or I might just sell her or trade her for a better model.

Request

If you are reading this I have one request for you... please make a post to your blog. I sit here at the hospital everday and I get so so so bored sometimes. So I go blog stalking and some of you are slacking in your one purpose in life... to entertain me! So please do your duty and post.

Update!

Anne is now 4 lb. 4 oz. Yeah!!! She is gaining weight and that is wonderful. Nursing... well each time she gets 2-8 mL not enough to keep anyone alive. She knows how to nurse but she gets tuckered out quickly. I started using a shield from recommendation of lactation specialist and now Anne won't nurse without it darn her. She has grown an attitude with the last few ounces. If I try and get her to nurse without it just to see if we can and she screams until I get the shield out and then she is fine. Stinker. She had another head ultrasound yesterday to keep track of the Dandy Walker and it looks the same as all the other ones... meaning its still there but its not getting worse. They should be checking her eyes today or tomorrow sometime just to make sure she will be fine and be able to see. Her feeds are up to 41 mL every 3 hrs. She is more and more awake and alert and that makes it more fun to sit and stare at her. I have been reading to Anne to entertain myself. First we read Charlie and the Chocolate Factory. Now we are reading Harry Potter. The Nurses think its the cutest thing. I think they enjoy being read to too.Amber sent some very cute clothes made by Salissa Palmer I think. They are way cute and I only managed to get a hat on her for pictures and she was a little to fussy to let me try anything else on her. How am I doing? Its really hard. I know I need to be doing those little things everyday to keep my self sane (scripture study, pray, eat right, drink water, get exercise....) but they all seem to fall by the wayside or I do them sometimes. Everything seems to stress me out. Even things that shouldn't be stressful stress me out. Sorry little sister but you wanted to stay this weekend and I really honestly said no because it stressed me out when it shoulda been happy to see her. The one thing that doesn't stress me out is the courtesy cart that provides free treats... I just got some sun chips. I love the courtesy cart. The other thing that doesn't stress me out is the black guy with the sweet punk moehawk/foehawk. There I feel better already. Sorry that last bit was a downer. I have been watching way to much CSI while pumping at the hospital I think. It is kinda depressing. PS this hospital has someone to take care of their plants. She dusts and waters and prunes and that is her job. Cool. Update post post ha ha after I posted this Anne took 16 mL w/o the shield and had no tears! Now my day is better.

Fatty McFatterson

Anne today is 3 lb 10 oz! Yup she is a fatty. Maybe at this rate she will be 4 lb by Monday?!? This weekend is conference weekend and the air is crisp and there is snow on the mountains. I dunno what I am going to do about conference... I am nursing her twice a day but i can't do back to back nursing. That means I either come down twice a day or stay down here for 6 hours or more. During the week that is fine because I'm here longer than that generally waiting for Andrew to be done with school/work. Weekends... there are other things needing to be done and other people to please. I will probably miss conference all together and promise myself I will read it when it comes out in the Ensign. I keep forgetting that if she was home with me I would be devoting my attention to her more than others anyway... some how I feel guilty trying to satisfy her needs because they require so much of my time and not just let me leave the room so I can nurse/change my child time but I need to drive 45 minutes to sit and stare at my child feed her read to her bond with her and not be home for hours at a time which means my laundry isn't done or sorted and my bedroom is a mess and I haven't showered in 2 days and I forget to hydrate and feed myself and I get no sleep not because my baby cries but because I need to pump food for her time. I begin to worry about others needs and thoughts more than my baby's needs. Stupid I know. This is hard. Trying to split my life between home hospital husband laundry in-laws.... on and on. Amber said I try to please to many people. It is true. In happy news Anne is nursing much better now. She got 4 mL Wednesday evening then 8 mL Thursday morning. That tuckered her right out and she wasn't very sentient for that evenings feeding. Today she got 2 mL so we know she knows what she is doing. She gets it now she just needs to strengthen her muscles and her hunger. She also needs to coordinate swallowing and remembering to breath... thus the oxygen. In other news my little sister gets to come down for conference and I persuaded the nurses that she is from out of state and it is a one time thing she will be able to visit Anne!!! I am so excited for someone from my side of the family tree to see our sweet little Anne. For the rest of you call her and be very jealous. Also I should apologize to all of you who keep calling me. I get NO SERVICE in the NICU. Sorry. When I finally do get your message I am to exhausted to carry on an intelligent conversation or heck... I just don't want to. Sorry if that offends. I'm a little stressed and I like my me time (silence, sleep, time with husband) If you want updates please call Mom or Amber or consult me right here. I will respond through facebook, e-mail, or blog quicker than by phone. Sorry no pictures.

Anne Active And In Clothing

Isn't she cute! Sorry for the camera turn

half way through... The stickers on the

side of her face are to keep the oxygen

in when she is nursing.