Pictures

On Sunday we went to the Arboretum to take family pictures for the first time since Kaylie was born. We went with the Stall family so we could get a picture of the two love birds together. Jolie and I have said since Fletcher and Kaylie were born we needed pictures and we were finally able to get it when both kids were healthy. Jolie has a friend that takes pictures on the side so we decided to try. Right now they are all being edited but Shannon sent us a few of just our family. Even though Kaylie was not wanting to smile we were hopefully able to get a few good ones.

2 weeks notice

Since we were discharged from the hospital (December 9th) Kaylie has pretty much been sick the entire time with a few days break here and there. A week and a half ago we went and saw the pulmonologist while Kaylie was very sick. It was good timing because we have been dealing with this same type of cough for awhile and her medications did not seem to help. He decided to change up some of her meds in hopes of finding the solution. Kaylie finally cleared up on Friday of this week. Thank you. I pray it does not come back.

Since Kaylie has been out of the hospital we have struggled to maintain her weight. She continues to lose even when she takes in a good 1200 calories a day. During her 18/19 month well baby appt. her pediatrician brought up the word I have been dreading...the G-button. This would be a temporary feeding tube in her tummy that would help us feed her whenever we needed to. Once we no longer have a need for it we can remove it. Jason and I would still feed her 5 meals a day but on days when she is sick and doesn't eat we can supplement her with a night time feed. Jason and I have thought a lot about this. Three of our doctors were on board with this but the feeding therapists from Our Children's were very against it because to them it is a major step back. We understood their way of thinking but they did not listen to us long enough to hear that we were not abandoning the program and we were not doing this because she was not eating. The reason we would do this is because she continues to throw up and continues to lose weight. Their response..."Well its their child!" Thanks for the support.

After a lot of thought and a meeting with the surgeon we decided to do it. The procedure is supposed to be easy and recovery time is minimal. We just wanted to make sure it was the right thing to do. After another week of major weight lose we decided it was time. Our original date for surgery was this past Monday. It ended up having to be cancelled when Kaylie started with her major upper respiratory infection followed by a fever that lasted 2 nights. During this time is when we met with the pulmonologist. He talked us in to waiting until we got her healthy before we made the decision. He said he had not done everything he could do to make her healthy and he wanted us to let him have a chance to help her. He said let him get her healthy, weigh her, and then give it two weeks. He feels if she is healthy she will eat. Common sense! Considering we have an incredible amount of respect for this doctor we decided to adhere to his wishes. With the change in her breathing meds and the change in her antibiotic that we use for her immunity we are finally healthy. It took 7 weeks but we are there.

This past Friday we saw the GI doctor and she was weighed. Since her last appointment she has lost a good pound. The bad thing is that she was weighed an hour after eating and at 4pm so this is not the most accurate weight. Chances are she is 17lbs. 4 or 5 oz. Ouch!

Since she is healthy this will be the starting point. In the next two to three weeks we will weigh her and if she has not had significant weight gain we will go ahead with the procedure. I know it is surgery but I think it will be a huge relief off of all three of us. We saw how much energy she had while she was in the hospital. I would love to have that back.

Russell Silver Syndrome

Right after we got out of the hospital we went and saw a geneticist to see if their was a reason to why Kaylie wasn't able to gain weight. After a good hour and a half the doctor let us know that she thought she had Russell Silver Syndrome. Even though she does not have all of the symptoms she has a good 3/4ths of them. The downside to this is that you have to accept this through blind faith because you can not really test for it. Most of the time this test only comes back with 10% accuracy so you have to rule out what you know it is most likely not and then accept that this is the answer. The good thing is that she has a mild case.

The cause...the 7th chromosome. Somehow she either got two mommy genes or 2 daddy genes. Most likely this is why she was premature. Originally we thought it was me that caused her to struggle but it was the opposite. It is rare that it happens twice in a family so hopefully our next pregnancy will be uneventful.

Here is a link. Most of the kids you will see are severe. Their are a few that looked just like Kaylie when she was little. Now you could not tell because her hair covers up her fore head. When you look through this site make sure you scroll down and read the section titled:

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Characteristics Considered to Distinguish Russell-Silver syndrome Children From Other Small for Gestational Age Children

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and...

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Characteristics of Small for Gestational Age Patients in General That Are Seen More Often in Russell-Silver syndrome Patients

*

She has many features in the first section but she has a good deal more in the second.

http://www.magicfoundation.org/www/docs/112.111/russell_silver_syndrome

In case you are wondering what all of this means here is a short summary...It will take a good amount of time to get some things worked out. It has been hard to figure out what is part of the syndrome and what is part of being a preemie. Things like the low immunity and chronic lung are from being a preemie. Things like her low muscle tone in her left side (for about 19 mths. we thought she had cerebral palsy), difficulty with feeds, digestion issues, delayed speech and many others are from the syndrome. Even though being diagnosed with a syndrome seems scary it is not. If this is what is going on we may finally have answers. In the end she will catch up with her growth to a certain degree by the age of six. Basically, the best part is that in the end she will just be short. It's not like I am the tallest one in the bunch!

I know it is weird but the first picture is of Kaylie at 7 mths/5mths corrected (duh) and the second picture is of another little girl that is on one of the sites. The picture of the little girl is the picture that made me realize Kaylie might truly have this. This child seems to have a mild case and has grown up to be a beautiful little girl. It helps you see the big picture.

Cheese

I realized today I had not taken any pictures of Kaylie this month so here you go. She actually posed for me.

Funny

This afternoon I went to get some prescriptions filled for both Kaylie and I. Usually, I go through the drive through but today I needed groceries so I went in. The techs were all busy so the pharmacist came up and asked who I was filling for. I told him 2 for me and one for my daughter. As he walked over to the computer he said "Kaylie...right?" Doh! He is not even there half the time I get something. Definitely a sign you have been somewhere too many times. I couldn't help but laugh!

To my baby girl

A Gift From God
By Dianne Brown

At first glance
you were so small
I hardy saw a baby at all,
with tubes and wires
a frightening sight
but you were in for a
big fight.

Not even two pounds
just skin and bones,
Your body so small
with problems so big,
but you fought hard
and continued to grow.

So many fears
So many tears

Precious child you are
home today
I love you dear,
more than words can say.
A miracle baby
A gift from God.
You showed the world
You showed us all.






Kaylie Marie...you have come so far. Starting out as a mere 1 lb. 13 oz. baby you have fought every step of the way to become the beautiful baby girl you are today. Every day you teach us something new. We are so blessed to have you in our lives. Never forget how proud of you we are for all the things you have overcome. Each day is a challenge and yet you always come through as if it was nothing. We have always said you were a fighter determined to make this world yours. May your love for life always continue as you get older. We love you!