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.

Halloween a week early

Our neighbors down the street decided to hold a Halloween party for the kids. This year Kaylie dressed up as a butterfly. Her costume was perfect for her. I did not want something that would be too over the top for her in fears that she would not be able to move. This worked out perfectly. Her outfit also had antennas with it but they did not sit right so I went ahead and made my own. Personally, I think mine are better!

More, More, More

Lately, daycare, Jason, and I have been working with Kaylie on a few signs. We have focused on a few in hopes of helping her communicate. The first sign she has learned is "more". At first she did it without any clue as to its meaning. Now you know she gets it. On Friday, I was talking with her teacher about what food she was out of. When I asked if she needed more yogurt melts (Kaylie's all time favorite food) Kaylie dropped her toy and started doing the sign for more. Awesome! The pictures below would be another signal that she understands this sign. Even though this container is as big as she is she feels the need to carry it over to us. Once it gets too heavy she proceeds to put it down and skate with it across the living room until she can see us to show us the sign for "more". It is the funniest thing. I am pretty sure the crackers were somewhat heavy for her because she grunted the entire time she walked with them.

Trouble and Shoes

Kaylie has discovered the kitchen drawers. These are her two favorite. Since they are what we consider "safe" drawers we let her go to town. The good thing is she takes things out and then proceeds to put them right back in. We have trained her well. The last picture is of her new shoes. You would not believe how hard it is to find a good pair of walking shoes for a toddler in a size 3. Most of the shoes for walkers start in a 4. I know it is silly to take a picture of them but they are too stinkin cute not too!

Dr Anxiety

After all the many doctors appt. Kaylie has had to go to she has developed doctor anxiety. No matter what she goes for she will start screaming the minute she walks in the exam room. It gets worse when the doctor walks in. I can't blame her.

Today was the first of 6 RSV shots. This year she has to get one in each leg because of her weight. Unfortunately, her weight has gone done. We are now at 16 lbs. 5.5 oz. =(

Happy note...Over the weekend Kaylie was playing on the far end of the game room. I walked in and asked her if she wanted to take a bath. I told her to come and she stood up and walked across the room, down the hallway, and into the bathroom on her own. Awesome! Her ability to respond to simple commands has been slow so this almost brought tears to my eyes. The other thing she responded too was when I asked her if she wanted her diaper changed before a bath motioning for her to come to me. She turned around from the tub, walked over, and sat down. Woo Hoo! Every time she follows a new command I can't help but beam with pride for the things she has accomplished.

Birthday Bash

This past weekend was super busy. With two birthdays to celebrate we had my family up for the weekend. On Saturday we celebrated Eli's birthday and on Sunday we celebrated Michaels. We had a blast. We even made time to take a trip to Babes for some absolutely delicious comfort food. Yum! If you have not been we highly recommend it. Here are a few pictures from this weekend. The ones toward the end are from the Big Orange Pumpkin Patch in Celina. We went last year but Kaylie was to little to actually enjoy it. This time she did great. She wanted to get up as close as she could to the animals. It wasn't until she put her mouth on the fence that I decided it was time for her to look from far away.

You can't make me!

Kaylie is in the tantrum phase of life. They do not happen all the time but lately they seem to be happening a little bit more than usual. Her tantrums are usually over silly things like mommy's keys, mommy putting her down on the floor, and/or being told "no". She is easily distracted so usually her tantrums are short. If distraction does not work she will stop because she does not like being ignored. This is a quality she got from her mother. Today her tantrum was over keys. ECI was here and we were trying to get her to do the sign for more. Apparently, this was not in her agenda because she threw herself on the ground and started to cry. When she tantrums she does this cry that you can't hear. After a few seconds of getting her lungs ready she lets it go in a full out scream. She throws her head to the carpet and puts all her energy into it. Needless to say she put everything she had into it because the next thing I know she started to turn blue. She held her breath for so long she actually rolled to the ground and looked like she was on the verge of passing out. Once she started breathing again she came over to me whimpering and rolled onto me like she was about to faint again. Weak I patted her and tried to get her to breathe with a regular pattern. My first thought was inhaler. After I gave it she perked up and was back to normal. I quickly called the doctor. Believe it or not when I told them what happened the nurse chuckled and said that they get these calls quit often. Apparently, my baby is considered a "breath holding tantrum baby". Great...Just what I need. She said it doesn't seem like it could be normal but it is. She told me not to be scared if at times she actually passes out. Huh?!? She told me next time she starts to turn blue I need to blow in her face really hard to scare her and make her breathe. I do not think that will be a problem.

MRI results came back today and everything is fine. They told me her brain looks beautiful. Thank you heavenly father for that. For now we are going to continue to try and get her to eat and gain weight. We are also taking her in to get her immunoglobin levels checked. This will help us figure out if she is lacking in the necessary antibodies she needs to fight infection. We were supposed to do this a few weeks ago but that was the day we had a bad experience trying to draw her blood. I have spoken with another lab corp located next to a hospital and they seem to be confident in drawing babies blood. Jason will be taking her in the morning.

New Trick

Yet again Kaylie is taking lessons from her boyfriend Fletcher. A day after Jolie told me Fletcher figured out how to get up on the couch by himself little miss decides to do it as well. She was so proud after the first time she kept doing it.

Today Kaylie had an MRI of her brain done. With the reflux getting worse she has started throwing up again at night so the doctor wanted to make sure that she did not have anything abnormal on her brain. We are not concerned about these results at all. We know that no matter what she is fine and this may help rule out things that we might try in the future. If for some reason their is something it will help us know if we can treat the underlying cause to her feeding issues and illnesses or if this is something we are going to have to find ways to work around. Either way we are ok with it. We should know the results sometime Friday. The wait is always the worst part.

Read All About It!

Kaylies new favorite thing is to get the newspaper. She gets so excited. Once she picks it up she tries to take it back to the house. The only problem is that the paper is alomst as big as she is. This helps put how small she is into prospective.

Busy, Busy, Busy

We had a great weekend full of fun and relaxation. On Friday, Kaylie had a sleepover with Fletcher while Blake and Jolie enjoyed a night on the town. We feel so blessed that we can do this for each other. Happy birthday Jolie!





The next day we were blessed with the company of Jason's cousin and his wife Deanna. Russ had been in Iraq for over a year and has not had a chance to see Kaylie since we told them we were pregnant (Decemberish of 2006) so this was definitely a treat. At first Kaylie was incredibly shy and refused to go over to them. By the end of the night Kaylie was standing next to Russ waiting for him to pick her up so she could sit in his lap. She would not leave him alone. It was adorable!






As we were watching football Kaylie decided to play with Shiner's bowl. This has never been a problem before but for some reason this time he decided to play back. He picked his bowl up with his teeth and carried it away. Jason and I could not believe it He has never done this before.


Before Russ and Deanna left Kaylie decided to show them her new talent of blowing kisses. She made sure to kiss everyone and then give it to them by putting her hand on your face. It wasn't until this afternoon when she did it again that I realized she was giving me the kiss. The bad thing is that when she puts her hand on her mouth she tends to lick it. Just FYI in case she gives you one!


To end our weekend we had lunch at Mattito's on the porch. Overall, what a great weekend. As you can tell Kaylie is getting good at holding her own bottle. Now she will just lay against us while she eats.

The Big 100

That's right. This is my 100th blog. Apparently, I have a lot more to say than I thought.

In celebration of this momentous occasion I must take the opportunity to brag on my little one. In less than a week she has gained 2 oz. shy of a pound making her a whooping 16lbs 9oz. The doctor and I were in shock. I figured she had gained some weight but almost a pound?!? I couldn't believe it. Hopefully, this is the end of a vicious cycle. He told me this was a good thing because if she had not gained adequate weight this time around he was planning on putting her back on a feeding tube. I think she responds well to these threats. She always seems to come through at the last minute. Thanks for every ones thoughts and prayers. They definitely helped.

Kaylie started in the young toddler 1 room at daycare on Monday. She acts like she has been there for months. She slept perfectly on her little cot on day one and loves going out for recess. They told me she enjoys going over to the little house and playing in it. She sits at a table with little bitty chairs and enjoys circle time. I thought she would try to run around the room during this but according to the others she sits and listens. They even have her doing craft projects that she is actually doing her self. Before I did not keep anything because I know she did not do it but now I have some beautiful refrigerator art. I love my speckled dog. It is true art.

In celebration of this weight gain I treated myself by finally pulling the tags off her 6 to 9 month clothes and washing them. I can't wait to see her in her new attire.

Spoiled Rotten

I finally admit it. My child is spoiled rotten. To my defense I still swear that I will stop buying her things once she is old enough to know better. For the most part I am pretty good. I try not to be an impulse buyer and really look for the deals. Usually it is the deals that get me into trouble.

The other day I went to Frisco's baby consignment sale. Unfortunately/fortunately (depending on who you talk to) it was not as big as I had hoped but still seemed to come away with a few good buys. I found Kaylie her Christmas dress in perfectly good shape for 8 dollars. You can't beat that. I also found her two really awesome toys for a really impressive deal. I could not pass either of these up!















Her other two toys came about because of my rule. Have a procedure done...get a toy. Mommy benefits from this rule too because if Kaylie has a procedure mommy gets to buy Kaylie a new outfit (or two). On Thursday Kaylie went in for her GI appt. Her weight and height were exactly the same as they were 7 week ago. He walked in in disbelief. As we talked I told him she has been refluxing a lot and is usually followed by her choking and then throwing up. I also let him know that she has been throwing up once a night, usually in her sleep for about 3 weeks. The problem is we have been struggling to find a medicine that she will keep down. As we continued to talk I decided it would be a great time to give her a graham cracker. I was hoping she would show him what we have been dealing with. Sure enough she showed him. She showed him all over his floor. Awesome! Way to perform baby girl. The awesome doctor he was he did not care about getting dirty. He helped me change her and asked me what he could do to help. As we cleaned her up he said he could smell the acid. He told us he was going to get us in for an upper GI in the morning to see if she had any mal rotation of her GI tract.

On Friday morning we went in. Knowing that she was going to have to drink barium I was going into this expecting the absolute worst! The thing about dealing with pediatric patients is that they usually make the parents participate in hopes of easing the child's stress level. As they strapped Kaylie onto this board the only thing she was thinking was mommy get me off this thing. I stepped back for a second to grab something and the techs got her to calm down a little. Seeing this I was quick to say I thought I should not stand close. I had already been traumatized by the blood drawing incident I did not want to witness my child in distress as they tried to force barium in her. As I waited and watched through a window she surprisingly drank the barium. Even with her arms pinned back she did ok. I got to watch the screen that showed the liquid going down her esophagus to her stomach. It was awesome. At the start they told me it could take anywhere from 30 minutes to 4hours. Thankfully, it only took an hour.

Results...everything looked fine. Thank goodness!

Afterwards, we went to see her pulmonologist. He was very concerned about her weight but feels that until the reflux is taken care of we can not move forward with anything else.

Summary...Right now our main goal is to get her to gain weight. We have an appt. with an endocrinologist in November. They might help add some insight to our troubles. My question is not why is she refluxing but why can't we keep weight on her. She drinks a descent amount of formula in a day and we still can not gain. Hopefully, someone can answer that soon.

The GI doctor wants her back this week to do a weight check. I feel confident she will have gained something. She has been eating pretty well and we increased her calories again.

Here are her toys that she got from the procedure. This was a pretty cheap excursion for me. After seeing her play with Fletcher's ball I decided to get her one. Dora is half the size of Fletcher's . I was sad at first but it seems to be the perfect size. At first she did not give it much attention. Then I bounced it on the tile. Now, she makes a funny noise, runs up to the ball, and immediately throws it. This is the same noise she makes when she realizes the gate to the stairs is open.

The other thing she got were extra balls to go in her dinosaur toy in the pictures above. They all have different things inside to keep her attention. Most of the time she will just pick one up and throw it across the floor or take them in and out of a bucket or container. She is too cute.