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.

Daycare Party

Kaylie's daycare had a Halloween party. Even though she wasn't in the same outfit when I got there to see her she still looked cute.


I know this one is dark but if you click on it you can see it a little better. I loved it.


This is her favorite push toy. The other day I watched her try to take one of the other boys down after he tried to take it from her. In the end he got it but she did not go down without a good fight!


Proud moment in a parents life!


What...you must be seeing things. I was not licking the house!


I think the chairs they sit in are adorable. Kaylie's feet actually touch the floor in these.




Do you think if we feed her pumpkin all day long she might gain some weight?


She enjoyed painting the pumpkin but did not enjoy the paint getting on her. She made the funniest face to let me know she was not having that red stuff get on her.

Test results

About a week and a half ago we had Kaylie's immugloben levels checked to see if she had everything she needed to fight infection. It is possible that a preemie can lack some of the essential things needed to stay healthy. Just like we thought she is low on two out of the five. She is low on the IGA and the IGG.

The normal for IGA is 20-100. She was 15. Not anything to be too concerned about it but it accounts for part of why she is always sick.

The normal for IGG is between 454 to 912. For this one she is 402. This also is a major factor in her staying healthy.

After checking with webmd her is a summary of what each one is.

. IgA antibodies are found in areas of the body such the nose, breathing passages, digestive tract, ears, and eyes.
. IgA antibodies protect body surfaces that are exposed to outside foreign substances. This type of antibody is also found in saliva and tears. About 10% to 15% of the antibodies present in the body are IgA antibodies. A small number of people do not make IgA antibodies.

IgG. IgG antibodies are found in all body fluids. They are the smallest but most common antibody (75% to 80%) of all the antibodies in the body. IgG antibodies are very important in fighting bacterial and viral infections. IgG antibodies are the only type of antibody that can cross the placenta in a pregnant woman to help protect her baby (fetus).

The doctor is going to call me tomorrow to talk about this in greater detail but for the most part this is good. They are going to put her on Bactrim to help with her cough that she has now and then he is planning to put her on a probiotic form of bactrim for the remainder of the cold and flu season. This in conjunction with her RSV shots will hopefully keep her out of the hospital.

Pictures

After I post things that make people sad I post something to make people happy. Usually I do it on the same post but figured the other post was already long enough. Be aware that in these pictures she is sick and teething. I am pretty sure she is getting a molar. Molars stink!!!!


I personally like the fact that I took the picture right as Bailey attempted to lick Kaylie. The look on Kaylie's face is even better.

I put this picture in because often I will lose sight of Kaylie and when I find her it is usually because I see her hair sticking straight up as she walks along something.

Finally

This past week Jason and I decided to hold off on posting this information. Before you get your hopes up we are not pregnant =). Now that you have that out of your head I can tell you that Jason and I have made the decision to go ahead and admit Kaylie to the hospital at Our Children's House of Baylor for 4 to possibly 6 weeks to help her with her feeding. This came after a tough week for me.

Last week Jason took Kaylie in to get her RSV shot. Before they give a shot they have to check her weight to make sure they are giving the correct dose. That is when we found out that she had lost weight again and was below her weight from our previous GI appointment. This frustrated me beyond belief so I called the GI doctor and after a long discussion he moved her appointment up a week and told us that we needed to come with our bags pack because if she had not gain any or only gained a small amount of weight he was going to send us to the hospital for a feeding tube. This tube would be separate from the feeding therapy program and would be temporarily placed down her nose. When I asked him about putting her in the feeding therapy program he told me we would talk about it when we came in. This frustrated me even more because the only way she could get into the program before January was if they were going to go ahead with the feeding tube and I needed to know what he thought so I could make the necessary arrangements for everyone. I ended up accepting his answer and hung up. Jason and I figured out that the reason he did not want to talk about it had to do with his concern about her weight. We think he may want to do it no matter what. That leads me to my part of this.

Over the weekend I was a complete and total mess. I have come to peace with the plans for Kaylie and then she goes and starts eating again. Don't get me wrong...I want my child to eat and gain weight on her own. What I don't want and can't handle is this emotional roller coaster we have to go through each time she loses or gains weight. I have officially become obsessed with it. I am in need of closure to this. I know that closure is a ways away but if she gains weight and he puts us off for a little bit longer we are ultimately delaying the inevitable. If her feeding issues had just started I would be more willing to wait but this is something we have dealt with since she was born and it only continues to get worse. I need a sanity check.

Here are some parts to the program. The worst parts are:
* My child will be in a hospital for at least 4 weeks
* Jason and I will not get to sleep under the same room for that amount of time because only one person can stay. Our time together will be mostly in passing.
* She will share her room with another family.
* Jason and I will have to sleep on a pull out chair. Not very ideal.

Fortunately, Jason and I understand that the short term hard aches will be worth it all in the end. That is what we will have to remind ourselves when this is all done and my child can eat and drink with out choking, throwing up, spitting on you, and/or throwing things at you. It will definitely be a long road but we know we can do it. I look forward to the day Kaylie can join us at the table to eat what we are eating.

Here are the other parts. I am taking this from the info that was sent to me.

After this initial treatment period, your child will be presented with a structured feeding protocol. The feeding protocol emphasizes the use of positive reinforcement and active ignoring strategies. Thus, your child will be offered a variety of foods and a drink. When he/she accepts a bite or drink he/she will receive attention from the feeder, specific verbal praise, and the opportunity to play. Should your child refuse a bite or drink, all refusal behavior will be ignored. Your child will never be forced to take a bite or drink. However, the bite or drink will continue to be offered until (1) it is accepted or (2) the time allotted for the meal expires. We will never skip a food or end a meal as a response to refusal from your child. At times, adherence to this protocol results in a child refusing to eat for several meals in a row. We monitor fluid and calorie intake and your child’s weight closely during the admission and adjust feedings as needed to protect your child’s health during these difficult periods.

The purpose of this behaviorally-based system is (1) to provide external motivation (attention, praise and play) for eating since food is not yet internally motivating to your child and (2) to break the pattern developed by most parents which leads to an ingrained habit of food refusal. During the inpatient admission, your child ultimately decides IF he/she eats; however, we take control of when, where and what your child eats. We teach children that refusal behaviors no longer make unwanted foods disappear while acceptance results in positive experiences like attention from adults and the opportunity to play. Through intensive caregiver training, we expect that by the end of the admission you will be able to implement this feeding protocol with minimal assistance from staff.

Each treatment level will have a goal and a reinforcement schedule (example 1 bite =1 reinforcement). The treatment level will not advance until your child has met the goals of that treatment level. A new protocol will be written as the child advances through each treatment level. The purpose of the protocol is to keep all feeders aware of any modifications that have been made to your child’s mealtime procedures. The staff will identify which areas of the protocol are essential and need to be consistently followed, and which portions are left to the discretion of the feeder. The goal for protocols is to conduct the feeding sessions in a routine manner, but they may not be exactly the same each time. Just as your mealtime routine at home is never totally the same from day to day, mealtimes here at the hospital will vary in some ways as well. Your child will need to get used to minor changes while maintaining positive eating behaviors.

Phase One (Observation): During Phase One, caregiver visitation is limited to evenings only during the week and on weekends. Therefore, your child will participate in therapies and feedings during the day without caregiver involvement. You may come every evening after his/her last feeding session (which is generally after 6:00).

The focus of this phase of treatment is to begin breaking some of the behavioral habits your child has developed. This not only focuses on feeding behaviors, but your child’s response to limits in general. Given that these patterns are most established with caregivers, we ask that caregivers are not knowingly (to your child) present during the day. However, we would like for you to begin observing feeding sessions from behind a one-way mirror. You will initially observe with the psychologist, case manager, or therapist. This will begin the training process for you, as we will explain the philosophy of the feeding protocol being utilized during these feeding sessions.

Phase Two (Participation in Therapies and Meals): Once your child has adjusted to the routine of the hospital and is beginning to make progress in the feeding sessions, we will ask that you begin participating in therapy sessions and in the feeding room.

The focus of this phase of treatment is to introduce caregivers back into the daily routine. We want your child to become accustomed to seeing you during treatments and meals but understand that s/he has to continue to participate as usual. During meals, you will be permitted to praise your child verbally and participate in positive reinforcement of food acceptance with cueing from the feeder. You will also practice active ignoring of any refusal behaviors.

The emphasis of this phase of treatment is to continue your training and introduce caregivers into the feeding sessions. By now, your child should have made progress with his/her acceptance of food. The goal of this phase of treatment is to maintain this progress while a parent is in the room. We expect an increase in disruptive behaviors during meals as the parents are being reintroduced; however, we will assist you and your child to work through this adjustment.

Phase Three (Caregiver Feeding): During this final phase, we ask that caregivers begin feeding meals. The following progression may be followed:

· The caregiver is expected to help prepare the meals with the feeder.

· The feeder and caregiver will bring the child to the room. The staff feeder will feed the first half of the meal and the caregiver will feed the second half of the meal.

· The caregiver will feed the entire meal with the staff feeder in the room providing feedback and cueing.

· The caregiver will feed the entire meal with the staff feeder observing from outside of the room via a one-way mirror.

Discharge: In order to maintain your child’s success, it is expected that you will strictly follow this program at home for several months following discharge. Caregivers who are unable to follow the protocol generally find that the child regresses back to preadmission levels. You can expect the first several weeks after discharge to the particularly challenging as your child will test your commitment to the new rules established around mealtimes. You will have access to the psychologist and case manger to discuss problems/behaviors that may arise after you have gone home.