Pictures Galore

As of right now we are still scheduled to discharge on Tuesday. I do not see anything holding us back so most likely we will be enjoying a nice Tuesday afternoon with our baby girl at home. We can't wait!

Here are some pictures from the last week or so. Enjoy!


Before she came here she did not like anything around her wrists. Now look at her! Nonna...do you thing Mrs. Vine will let her have some of her bracelettes?


Her other new favorite thing since coming here has been to play and love on her dollys. She has learned how to hug them and give them kisses.


Kaylie is currently in the process of getting several teeth. She has one that is on the verge of cutting the skin. It is the 4th tooth on the bottom. It is actually to the left of her other three (If you are looking at her). From what I can see it looks like she may also be getting some canines. Poor thing. I know it must be hard teething all at once.


HEY YOU! Over there...do you notice anything different around here?


Look closely...


That's right...my tube is gone. Don't I look gorgous!


Washclothes are her new toy. Who would have guessed mommy could buy her a pack of towels and skip the girly toys.


Look at her pudge! Isn't it adorable. What you can't see is her belly hanging over the container. It tends to lead the way when she walks.




This is one of the other little girls in the feeding program. She is one of the most beautiful little girls I have ever meet. She is so sweet and loving. Kaylie will miss her when we leave.


The music therapists came for the kids while she was feeding so to make up for it they gave her a private session. If she takes on the musical side that many members of our family have I could see her taking up the guitar. She seems very interested in it. She pulls it out of the play room whenever she can find it.




The other thing she likes to do with her dolly is feed her a bottle, give it her own paci, and try to cover/swaddle her in a blanket. I about died laughing when I realized she was giving her own paci to the doll. It just amazes me what they pick up in everyday life.

HEL .........P

Before entering the feeding program Kaylie's speech was incredibly delayed. This is normal considering she has difficulty with her feeds. Usually the speech will come after the feeding improves. This has definitely been the case.

Before therapy...she said da da and a few letter sounds but still lacked in several key sounds. We would get mum, mum, mum only when she was mad so I would not really classify that as mom. She would say dah for dog and clear her throat to say uh oh. It sounded painful but was adorable all at the same time.

After 3 weeks of therapy...She now says the following. They are in order of appearance. Surprisingly, they are all clear.

1) da da - No mistaking this. She knows who he is and can say it very clearly. It makes my heart melt because usually it is accompanied with the biggest smile and laugh you have ever seen.

2) Uh Oh - She no longer clears her throat to say it. She doesn't say it as often as she had but she can now make the correct sounds.

3)dah - I am not really sure if this is a word or not but it is her way of calling for the dogs so we are going to give it to her. I still insist I heard her say dog one day at Jolie's.

4) all done - She usually says this during her feeds when she has no desire to be there or when the timer goes off signaling the end of her meal. She has grown accustomed to the timer with her feeds and gets super excited when it goes off. She smiles, pushed the button to turn off the timer and says "all done" while clapping. I will have to video it one day.

5) hello - On Thanksgiving we were playing with her telephone. We answer the phone and give it to her. She took the phone and said hello.

6) ma ma - In the past two days ma ma has officially made its appearance. I got to listen to her on the phone while I was at work this afternoon repeat it over and over. When Jason would say it she would say it back. Jason said she walked up and down the halls all day saying it. I am no longer chop liver =).

7) Help - This is our newest word that made its appearance today. Whenever Kaylie starts to fuss because she can not figure something out or get something she wants we will say "help?". Then will follow it with showing her the sign and saying "help mommy." She was trying to get a toy from the table and got frustrated. Jason asked if she needed help, repeated it once or twice and the next thing she said was, HEL...P. She combined the first three sounds and accentuated the P. Jason was so excited he tried to get her to say it for me while on the phone but instead she just repeated mama. I guess I can't complain!

18 and counting

Today we hit 18 lbs 2 oz. Her little legs are getting super chunky. She no longer looks sick. What a blessing.

With her increase in fluids they are dropping her formula feeds at night all together. This is one step closer to us not needing the feeding tube. The trick now is for her to take in enough food and maintain/continue gaining her weight. Way to go girly!

The one hiccup we are having right now is with her 2nd feed of the day. She continues to throw that one up. Our guess is it has to do with her meds. They have been giving them to her all at once and that is not something we have done. We think her Prevacid may be upsetting her stomach. We are planning on addressing this with the doctor. The other thing we are wanting to address with the GI doctor is how quickly she is able to empty her stomach. Her reflux was made worse by the fact that she still had a good amount of food in her stomach several hours after she had eaten. This could also be part of the reason she does not eat much.

The honey bear is proving to be successful! She has now finished off 2 4 oz. bears and has started taking water in addition to her milk. They have also taken her off her formula and have successfully switched her to whole milk fortified with Carnation Instant Breakfast. The transition did not phase her. Goodbye 26.00 a pop formula.

Kaylie continues to get better with her eating each day. The amount of food she takes increases each day. Her energy levels have shot through the roof and her speech has improved in an incredibly short time. Even though I am scared to death to take her away from her safety zone I know she will be all right.

Photo Disclaimer: Please ignore the food on her face. It is really hard to get things off of her nose without taking the tape off. The last thing I want to deal with is the tape on her face or risking her tube coming out.












For Thanksgiving we were blessed to bring Kaylie home for 6 hours. It was great. Kaylie was so excited to be home and see her dogs. They had a therapy dog at the hospital the other day and you could just see how excited she was to pet her. Believe it or not I think the dogs were more excited to see her than she was to see them. She definitely loves them both and can't wait to be home to see them.

The hardest part of the day was having to put her in her car seat to say goodbye. I had just finished a four day stretch at the hospital and it was Jason's turn. I keep reminding myself that we only have a week left. Kind of crazy!

Discharge info

Yesterday we sat down with our CARE team to discuss Kaylie's progress. This team includes the parents, case worker, psychologist, OT, Speech, and feeding therapists. This meeting was a follow up to the one we had after being here for only 3 days and The tone for this meeting was so much brighter. Kaylie has made tremendous progress in a short amount of time. She is taking a few more pureed foods that have a bland taste but continues to refuse anything with strong flavors to it. At first she refused ravioli (pureed) but after 4 days she will now eat it. She is definitely not her mother's daughter because the girl does not like mac and cheese or chocolate. If she only knew what she was missing! For now we are going to continue with the purees and as time goes on and she has a wider variety of foods we will move on to foods with textures.

Right now us going home on the feeding tube is still up in the air. If she had maintained her weight with the decrease in formula over the past few days they would go ahead and cut the rest of the formula. We could see the difference in this because her fluid in take was increased by almost 6 ounces. That is fantastic but we have to be able to maintain the weight as well. Hopefully, she will be able to take in enough liquids to cut the tube. As replacement for the bottle we will continue to use the honey bear. She is now being offered water in between meals and is doing well taking it on her own out of her bear. That is huge! This is progress.

Yesterday, I got to sit in on her occupational therapy session. I really loved watching the things they do to try and make it non threatening. Poor baby girl is more terrified of touching things then I thought. She looked like she wanted to come unglued when a vanilla wafer with apple sauce got to close to her. It is a rough life!

Kaylie is weighed every M,W, and F. This morning I held off on weighing her until I knew she had done all of her business. I figured I would weigh her and then she would fill her diaper. Once she finished we put her on. After she was weighed I realized she still had her paci. Now I know you think I am crazy but I made them reweigh her. Call me crazy but it actually made a difference. As I finished getting ready I realized Kaylie was filling her diaper yet again. Crazy women I am I made them reweigh her a 3rd time. Good thing. She went from 17 lbs 13 oz. to 17 lbs. 11 oz. I think she actually lost a little. On Friday she was 8.03 kg. and today she was 8.02. Not much to write home about but enough to continue with her feeds as is.

As of right now our discharge date is set for December 9Th. That will put us at 4 weeks and 1 day. Once home we will transition to out patient which will be 2x's a week until we no longer need it. When we leave here she will still be on purees but they are planning on providing us with all the tools we will need once we are out. We will be given all the recipes needed to enhance her foods and be taught how and when to introduce new things. They always say you should introduce a food with the hands first. If they do not want to touch something why would they want to eat it?!? Guess that makes sense!

So...assuming everything goes according to plan we will be home in less then 2 weeks.

A little late

I started this post a few days ago and am just now finishing it up (Tuesday). Sorry!

I took a few pictures of Kaylie being Kaylie. She has had time to get comfortable here and is now back to her normal self of running the place. We have had to "Kaylie proof" things by taping cabinets closed and turning trash cans around. One of the cabinets was so big she could get in it so we figured it needed to be closed off. The nurses and I pictured us looking for her one day and having no clue as to her where abouts.

She now has a bunch of new favorite things to do. She loves riding in the wagon, playing with the dinosaur, and finding anything she can to push around. She can locate a step stool anywhere letting everyone know exactly where she is at as it screeches across the floor. The other day the nurse even showed her how to push her pack and play around the room. FANTASTIC!

Since Kaylies initial 1 pound weight gain things have slowed down which was to be expected. On Friday she was still at 1 pound weighing in at 17lbs. 7oz. Yesterday (Monday) she weighed in at 17lbs 11 oz. putting her over the 8kg mark. Because of this great weight gain they reduced her tube feeding at night

My Chunky Monkey

So far things are going well. Over the weekend Kaylie took in enough calories to take away her formula feed during her nap time and replaced it with Pedialyte. She is supposed to be taking in 24 oz. in addition to her food calories and this is one way they can do that.

Kaylie is starting to eat more types of food. Today she ate some tomato soup and some cream of chicken soup. I cringe at the thought of having to make tomato soup. Bleh! =)

Over the weekend Kaylie gained about a pound. On Friday she was roughly 7.4 kg and on Monday she was 7.9 kg. When weighed today she maintained that weight so they decided to decrease her night time continuous feed by 2 hours making it from 8 to 4.


Since the sippy cup is still a struggle they decided to try her on a Honey Bear. If I would have thought of this I could be a millionaire. All she has to do is squeeze its belly and liquid will come up through the straw. As I read up on this it said it was great for preemies that struggled with the transition from bottle to sippy.


Can you tell she is eating? She is wearing half of it. I think this would be peaches. I love her outfit. The title says my favorite things on it. The one that is covered up says "daddy." Can you guess who dressed her?


Here is a picture of the headphones and CD player they gave her for the listening therapy. Do you think they could be any bigger? The pack will start pulling her pants and her diaper down. Unfortunately, she is not to fond of the headphones so I was not able to get the greatest picture.


This is to show that duck tub saves the day yet again. If they offered I would become a duck tub spokes women. It is awesome!


Look at our chunky monkey. She has always had fat on her belly but now she has fat on her legs today. Even her feet have gotten fatter. I love it. It cracks me up to see her belly leading the way as she walks. Also, if you look in the picture you can see her baby lo-jack on her left ankle. This was put on all the in patient kids to keep them safe. I really think it was to keep track of her.

Prayer Request

Please pray for the Holland family specifically their beautiful baby girl Laney. Laney is 8 months old and was born 3 months premature. Today I found out that Laney has been diagnosed with cancer of her liver. She is at Childrens and will have surgery once they determine the severity of it. Please pray that she will be heeled quickly and that the road ahead is not a long one.

http://bryceandlaney.blogspot.com/

Happiness/frustration

Happiness

* She actually ate and drank (using a sippy cup) enough today to meet her calorie intake for the day. Because of this they are taking away her formula tube feed at nap time and replacing it with water to keep her fluid levels up.

*After having lost weight the first few days it looks like she gained close to a pound. Woo Hoo! Keep packing it on baby girl. Mom is in the mood to buy you 9 to 12 month clothes. =)

* Her energy levels are way up. She has turned into the energizer bunny during the day. She goes 90 miles a minute without stopping running up and down the halls. She did so much yesterday she pooped herself out before Jason even got there and ended up sleeping through the night. He got to the hospital at 5:50 and she was out cold!

* Her speech is coming along. She squawks and squeaks and makes so many new and exciting sounds that we have never heard. She laughs loudly and yells to get attention in a way that is so incredibly adorable you can't help but laugh with her.

* She has started to ask for certain things and has become quit the opinionated one. You definitely do not have to hear her speak to know what she wants and when she wants it.

Frustration

* I worry they are setting us up for failure once we are home. I observed the other day and realized they were using the tv as reinforcement. I do not have a problem with the tv itself. What I struggle with is the practicality behind it. Their is no way daycare can put a tv on for her during her feeds and turn it off the minute she does not "take a bite." It would be completely unreasonable for me to even think that daycare would do that. I hesitated to talk to the case manager about it today because I don't want her to think I am complaining and uncooperative. As everyone knows I am a people pleaser and do not want to cause trouble. When I mentioned the tv thing I was quick to say my reasoning behind it. Apparently, she did not hear my reason and was quick to say that basically parents need to get over their concern about kids watching tv if this is something that works as a reinforcement for the child. I quickly told her the tv is not my issue but daycare. She said that they have to find a system that works for her. The thing is I get that. What I don't get is how could that be her only reinforcer. It never even crossed her mind prior to going into therapy why would it be her only motivator now?!? Once she is at daycare she will not have that to motivate her for 2 of her 5 meals. If their program is completely child centered wouldn't they help us adjust that to make both her and her parents successful when she gets out?!? Wouldn't they set her environment up for that? If the parents can not provide the appropriate environment right out of the gate is that not setting her up for failure. It sounds selfish of me to even say that after all of this that we can not provide her with the environment necessary for her success but it is the reality behind it. Am I over reacting?!? I refuse to spend 4 to 6 weeks of our life as a family away from our home to walk out and not have what she needs to succeed.

Progress

So far things are moving along. On Tuesday Kaylie refused to eat anything other than her bottle so they decided to go ahead and put in a NG tube (feeding tube). This has helped take away her dependence on bottles and has allowed her to start taking in more solids. As of today she has taken in food at every feed and is starting to figure out the sippy cup. This is awesome. She has struggled to figure out how to suck on the sippy cup so it has been hard for her.

Today they started a form of music therapy. This will be used in conjunction with her occupational therapy as a way to help with her auditory processing. She has been delayed with her processing abilities making simple commands difficult for her to follow. This program is designed to teach her to filter out unnecessary noise and focus on the important things around her. It should also help to decrease her over stimulation. The hardest part to this program is the fact that she has to wear head phones. So far we have not had any luck with this. I think with time she will overcome this.

Overall, everything has been good. The worst part for all of us has been the feeding tube. Last night was the first night that it came out and putting it back in was traumatic. It got to the point where the nurse would try to put a piece of tape on it and she would scream bloody murder. I guess I can't blame her.

Pictures

With the exception of a screaming child from another room and little sleep for me the night went well. For those of you who know my fear of storms I actually got the good end of the deal. Frisco experienced a night of many loud thunderstorms which bothers Shiner not Jason. Jason ended up spending the night with a dog that would repeatedly get on the bed, jump off the bed, and then go under the bed just to repeat. Needless to say my dog does not handle storms well at all. At times he will attempt to dig a hole in places that holes cant be dug like my couch. Silly dog. For Kaylie and I we just got rain. Good deal for me!

I am not really sure if I did the right thing this morning in the way I left her. I know waking up in a strange bed in a different room was scary for her. I made sure to give us enough time before I had to leave to get us both ready and have some time to play. She was very clingy (can't blame her) so when one of the other little boys came out to play and she became preoccupied with him I signaled to the nurse and she came over. Kaylie saw me go towards the room but did not see me leave. The nurse was picking her up from the door right as I was walking out so she did not see me. For some reason I do not feel like I did the right thing but I am sure this avoided some major tantrums.


Drawers equal trouble!


Her fingers were later sacrificed! Once by her own doing and once by my doing. Oops


OK...so this was staged but, if I would have been a few seconds earlier you would have seen her climbing over all of her clothes to get something out of the suit case. Either way it is still cute.



She has been infatuated with this fish tank. It is in the same hallway as our room and play area so she can go over to it whenever she wants.


Her baby jail. No worries, she was not crying in this picture. She had just woken up and I wanted a picture. Jason is bringing up the pack and play tonight for her to sleep in the rest of the time. It will be so much easier to take her in and out without having to raise and lower a heavy bar.

Day 1

So far so good. Kaylie did her usual walk in, figure out it is a doctor type setting and scream. If they tried to do anything other than listen to her breath she would scream. Eating wise, same old same old. They let us do what we would normally do and then she will officially start the "program" tomorrow. In between feedings we had many visits from everyone that is involved in her care. When we were not doing that we were playing. By the time bed time came around she was exhausted, screamed very little and then passed out. Much different experience than when she went down for her nap. It doesn't help that the crib they have her in looks like a prison cell for a baby.

Today's weight: 16 lbs. 7 oz. She has lost 1 1/2 oz. from our last weight check. They are not going to give her a whole lot of time to determine if she will need a feeding tube or not. Chances are she will. She can not afford to lose any more weight.

I forgot what it felt like to be in a hospital setting. We are back to measuring all of her food and her diapers to check for hydration. Even the smell of the soap brings back weird memories.

Most likely I will not do daily emails so don't get your hopes up =).

Overall, if I was to rate the day I would give it an A. Things have gone smoothly. Hopefully, I will not change my opinion after I am in bed. =)

My baby girl and her man

I just thought these were sweet! Seeing the two of them next to each other makes me realize that they are no longer babies. They can actually communicate with each and often make each other laugh. Time goes way too quickly!

This is the first time she has played with the lawn mower and seemed to enjoy it. The lawn mower would get stuck on something and she would get so mad. It is hard not to just bust out laughing.

Tomorrow is our big day. I will be staying at the hospital tomorrow night so most likely I would not blog about our day until Tuesday. Little Miss has eaten very little the last few days showing us how important the next month to month and a half is. We are definitely ready.