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.

Monday pt.2

We are on for Monday. We will go in between 10 and 11 and stay with her the entire day. I will spend the night on Monday and then from Tuesday on we will see her at night for the first 7 to 10 days. After that we have to be there for 4 out of 5 feeds. Please pray this will go smoothly!

Monday

Our insurance case manager had to get his director's approval before we can start. The director had a question and before he sent back his confirmation he left for the day. Silly man left before 3 (apparently due the election since most of downtown chicago vacated in advance of the Obama rally). Since they want to make sure they have a few days of good monitoring in case something bad happens they do not admit past Wednesday so assuming we are approved in the next few days we will start on Monday. I do not want to wait too much longer with the holidays quickly approaching. As of now she will for sure be in for Thanksgiving but not Christmas. They will discharge no matter what before Christmas. My only concern would be making sure she doesn't get rushed though. If that is the case I would want to hold off to make sure she gets everything she needs. Pray for Monday!

Monkey in action

Here are a few videos of Kaylie's climbing abilities. Once she gets to the top or slips just a little she will throw herself onto her belly, slide down, and start climbing right back up. It has not mattered how steep the slide is she will still get to the top. It blows me away how strong and fast she has become.

Time change and Kaylie don't mix

First, we are still waiting on insurance to approve our hospital stay so as of now we will be going in on Wednesday. Say your prayers it doesn't get bumped to Thursday or beyond. We are ready to get started.

That leads me to time change. It is a lot easier for an adult to adjust their body than a baby. Kaylie was up at 5 wanting to eat. Since it was dark I was able to feed her and put her back down. Tonight when we got home all she wanted to do was sit in my lap. How can you tell your baby that you have to stay up so you will not wake up in the middle of the night?!? Little girl goes to bed between 6:30 and 7:00 as it is. It just doesn't seem to work. As you can see by the Buster pictures she decided to use him as a resting post. Usually, she tries to get as far away from him as possible and I have to use my creativity to get a good picture.

Stonebriar Mall

Today we met up with Way Way and Claire to have some mommy daughter time. With two babies it has been really hard to find a time when both of our babies are not sick. After eating lunch at the Cheesecake Factory we went to the play area at Stonebriar. This one is not as baby friendly as Willowbend but we made it work. For some reason my pictures turned out somewhat funny. I think it was either the lighting in the mall or the photographer. My guess is a little of both.

Once Kaylie relaxed she had a blast. I turned away for a second and when I turned around she was gone and no where to be found. That is when I noticed this little tiny thing in between two bigger boys trying to climb up the same slide. She has definitely become fearless. She was trying to climb up every steep little slide and did so with ease. Once she got to the top she would lay down and slide to the bottom. My biggest fear was that she would try to stand up in the middle of this and fall backwards. Thank goodness we came away injury free.

My Gym

On Saturdays we take Kaylie to My Gym. We had thought about quitting but after seeing how much she has enjoyed the last few weeks we have decided to extend our contract. The cool thing is that they are going to allow us to make up the classes we are missing because of the hospital without any charge. This week they got to wear their costumes. I thought this would cause a problem for her with all the climbing she likes to do but surprisingly she did just fine.

Her new thing...She will crab walk up the slide and then fall to her belly and slide down. She stands up and does it again. I thought this was strange but then I saw someone at daycare do it and it all made sense.

Halloween Night

With Kaylie being a little bit older this year we decided to go trick or treating in our neighborhood with the Stall family. Kaylie and Fletcher had a blast. As Jolie said in her blog, they would each go to the door and once Fletch knocked he would take off running so Kaylie could close the deal. They were adorable! Kaylie's favorite parts of the night were getting the Gerber Puffs from Jolie's parents, shaking the candy boxes, and carrying her pumpkin that we got for her candy. Two days later and she still wants to play with it and carry it around.