Tomorrow is the day

Tomorrow is the big day for Kaylie's endoscopy. Please pray that she will come out of the anestigia safely without any complications and that through this we will get some well needed answers. We will let you know as soon as we get the results. Thanks for all of your love and support. We truly appreciate it.


Here are some pictures I took of her yesterday. When she stood up with her hood on she looked like a pink tiger. It was adorable!

What a difference!

What a difference a year makes. Happy Father's Day baby!

June 17, 2007 - 2 lbs 8 oz

June 15, 2008 - 13 lbs 4 oz

Happy Father's Day

Happy Father's Day to my loving husband and even better daddy. We hope you enjoyed your day!

Kaylie decided to make sure daddy knew who the card was from. I personally think she was waiting for him to put it down so she could chew on it.

Kaylie was happy that daddy enjoyed his gifts. She was even more happy that he did not want to keep the gift bag.

Kaylie decided she was going to drive daddy to breakfast. The only problem was she couldn't figure out which key she needed to use.

After accepting the fact that she was not going to be able to drive, she kicked back and relaxed while mommy and daddy ate breakfast. She was so well behaved.

Since daddy did not get to play in the splash pool with us yesterday we decided to get back in and play today. Since this is daddy's favorite swimsuit we put it on especially for him. I had more fun playing today than I did yesterday. Since we didn't have the slide attached mommy moved the pool to a flat surface. This made the water a little deeper. The other thing was that we brought out some of her bath toys to play with. This pink sting ray is her favorite. As long as she had that she was happy.

Today she was definitely a little more adventurous. She crawled all over daddy and I trying to get from place to place. The only thing I was worried about was that she would face plant and hit her head. We figured she was done when she kept trying to crawl off the mat.

We finished off our day by surprising daddy with a nice dinner out at one of his favorite places. We took him to a Fogo de Chao. This place serves all the meat you could possibly imagine. By the time we left we were fat, full, and very happy. Overall, I think daddy had a great day.

Leisure Day Saturday Part 1

Since daddy was off wandering around in the woods avoiding heat stroke for the majority of the day, Kaylie and I decided to gallivant around town enjoying a beautiful Saturday afternoon. The first stop was joining Way Way and Claire for lunch at Chili's. The cool thing about this was that we have had a hard time getting together because every time we schedule something Kaylie gets sick. I joked that I was no longer going to plan anything with her because whenever we planned ahead, Kaylie came down with some knock down drag out illness. Both babies were so well behaved. Ms. Claire is teething causing her to chew on everything. Sorry Way Way. I jinxed you!

Kaylie became super fussy towards the end of lunch so I took her out of her seat and held her. The only things that made her happy were climbing across the table towards Claire to grab her paci and this. I am literally holding her as she stretches across the high chair to get the strap. Another table couldn't help but laugh at her. As long as she wasn't crying I did not care!

Our next stop was Babies R Us. Of course I went in for one thing. As usual I walked out with a lot more. It was one of those trips where you know that daddy is not going to be too happy with you. I walked out with yet another toy. Oops! This was her first "official" time in a grocery cart. The first time was quit disastrous so I don't talk about it =). It was one of those moments in time you try to erase =/. She looked absolutely adorable in her cart. She looked so tiny. Even though she was strapped in I was worried if I turned a corner too fast she would fall over and hit her head. Thank goodness she did great.

Towards the end of our BRU trip she was getting super cranky. What I didn't realize was that it was 2:30 which is way past her nap time. I ended up buying this toy and the bow in her hair. The toy made her very happy.

Leisure day Saturday Part 2

Once home I put Kaylie down for her nap. She slept for 2 hours. The second she made a peep I ran up and got her out of bed so we could play in the water. I had bought her this splash pool and couldn't wait to see her in it. At first she freaked out because I had the water too high. She doesn't like to have her face splashed. Once I turned it down and sat in it with her she relaxed and played. The best part of this was when she tried to drink the water. After the second time of choking she decided to stop for a little bit. Then she did it one last time. That was the time I was able to get the picture.

This is her new toy. Since she has had delays in the past with her motor skills I take every opportunity I can to find toys to help build her skills. This toy allows for her to play with a bunch off different things at a time. We can even buy some additional pieces to add to it. It is so cool and not so big that you walk in and feel like you have a major eye sore in your house. She enjoyed dancing to the music and eating the ball.

Finally, I couldn't resist this picture. She crawled over and used the door handles to pull herself up. She looks so cute.

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We topped our day off by meeting daddy and his racing teammates for dinner. It was the first time for them to see Kaylie so I figured I would make daddy's day by going.

*

PS (from Kaylie to daddy)

Daddy, I am so proud of you for doing so good on your race. Thank you for coming home safely. I missed you. Oh yeah...I will not allow you to do a ten day race. =) It is too long to be away from me and I will miss you way too much! I love you so much. Love your little girl

Fun in the sun

Here are a few pictures from the last few days. The first 2 are from Mondays swimming class. This was our first class. The water was super cold that day but has slowly begun to warm up since it has not rained since Tuesday.


Kaylie, Kalie, Nicholas, and Jaxxon.

This is one of my four bathing suits. Do you think mommy went a little crazy? Oh well, I am only little once!

The next set of pictures are from today. We started our day off by going to stroller fit and then swimming. Kaylie is starting to enjoy herself. Today she actually started smiling and looking all over. She interacted more with others and bopped to music. She started dancing two days ago. It cracks me up. She even did it sitting on the side of the pool. At swimming she became somewhat irritated because I would not let her do what she wanted. She was so angry because I would not let her hang on the side of the pool and chew on the edge which is a type of tile. Do you thing she might be teething?!? For some reason this was the only way she was happy. She did enjoy getting out, sitting on the side, and then "jumping back in." The "jumping" part was really mommy putting her back in. Towards the end she actually turned to the side and reached out for the edge of the pool. It is awesome to see how comfortable she is becoming with the water.

Not only is it early for us but it is early for them. It was hard to get a smile from any of them.

A lot of times she kicks her foot up on the tray and relaxes while I jump all around her.

Post swimming picture. They all had so much fun today. The water has warmed up just enough to make it fun.

Is it just me or does she look like she is causing trouble. Her new thing is to dig through my purse and throw things out. Fabulous!

The Verdict

Today we went to our follow up with the GI doctor. She weighed in at 13lbs 4.5 oz. We gained a whopping 1/2 an ounce. The only reason we did not lose weight was because we have added more formula to her bottles making each 2 oz. 27 cals versus 20 cals. We have been recording how much she eats each day and once the doctor saw that she had not gained weight or improved in her eating from the Prevacid we made the decision to schedule a needed procedure. Next Thursday we are going to have an endoscopy done on Kaylie. The only thing I am worried about is the anestegia. She has had to be put under for her tubes so I know she can handle it but it still scares me. Right now I am not too concerned about what they might find. He told me one thing he thinks might be going on. He thinks, and seems pretty confident, that she has Eosinophihlic Esophagitis. After reading up on it Jason and I think this may be what is going on.


Here are some of the symptoms Kaylie has that would relate to this disorder:
* She has Atopic Dermatitis which is the same as Excema
* Asthma, hay fever
* difficulty swallowing
* coughs while eating
* occasional vomiting
* failure to thrive - means can't gain weight
* major acid reflux when she was younger

(Here is a site that explains what an upper endoscopy is. http://www.webmd.com/heartburn-gerd/guide/upper-endoscopy)

( Here is a site that explains what EE is http://www.medicinenet.com/eosinophilic_esophagitis/article.htm)

Please pray that this procedure will give us some needed answers. We have struggled with feeding since she was born and have always felt that something else needed to be done. Nothing could be done until she started to lose weight. Please pray that nothing major is going on and that this is something that can be cured with very little intervention.

To be positive Jason and I feel that all of her health concerns could possibly be related to this. Their is a possibility that this could be the cause of all of her upper respiratory concerns and may even do away with them. She was recently diagnosed with chronic lung and hopefully with our findings this will no longer be a true diagnosis and we can stop the medications that are used for this.

(Site for chronic lung disorder: http://children.webmd.com/tc/chronic-lung-disease-in-infants-topic-overview)

No matter what Jason and I know we can help Kaylie get through this. We have wonderful friends and family that love us and support us and for that we thank you! I think we all want the same thing...for her to be healthy and happy! The thing I remind myself is that she will not remember any of this.

After all of this how could I not take some pictures of her. Enjoy!




No, she did not do this on her own.

Day 1

Today we had a day of a few firsts. Some of these were good and one was BAD!

The bad...Usually we pick up the dog food. Today we didn't. Fill in the blanks for yourself. The worst part was that when I saw her I freaked out. Usually I am calm, cool, and collective. Not this time. We had had conversations before about how a child has died by choking on dog food and for some reason this has freaked me out so when she did it I ran over, knocked the piece out of her hand and dug in her mouth for the one I could tell she was sucking on. The wonderful mom I am I ended up pushing the piece further back. I want to think this is the reason she was able to swallow it. Yah right! Definitely not one of my greatest moments in history. Praise God, she did not choke!

After that magnificent moment I feared the rest of our day would be filled with bloopers to be recorded on my blog. Thankfully, the rest of the day went off with flying colors.

The first thing we did was go to a Strollerfit class. Strollerfit is a wonderful way for a mom to work out without feeling guilt over leaving their baby. The babies sit in their strollers while we do cardio and strength training all over the mall. Needless to say months of doing nothing really showed. It kicked my hinney! Even though I am exhausted I feel good. I have been needing to do something for myself. It helps Kaylie enjoys people watching while chilling in her stroller.

Right after stroller fit we changed into our swimsuits and went to our first swimming lesson. This is a parent and baby class. The main objective of this class is to help get the baby used to being in the water. The bad thing was that the water was very cold making Kaylie not to excited to be in it. Very rarely does she cling to me but today I couldn't peel her off. She let me take her in the water but I had to hold onto her super tight. After about 15 minutes in I started to slowly lower us deeper into the water without her catching on. By the end of the class she was actually pushing away from me. Success!

The rest of the day was spent sleeping and playing. The mornings activities wiped her out. Overall, it was a great day!

(Once I get pictures of todays swim I will post them. I should get them in the next day or two)

This is the swimsuit cover up that mommy got me. It matches my swimsuit.

Why can't I gain any weight?

I do not think the Romba is being used for it's intended purpose!

Tears

Something no on knows about me is that a few of my happiest posts are written when I am pretty down. Usually it is during a period in time when things are not going so well for Kaylie and I am to the point of breaking down. It is a point where it seems like every other day a new illness is popping up giving her little to no time to enjoy being a baby. These posts usually have very few things written with them and for the most part they do not have much meaning behind them. They are just of Kaylie doing what she likes to do the most. I post these pictures as a way to remind myself of the beautiful miracle God has given me. God has trusted me with his child knowing that I can take care of all of her needs. Whenever I post these pictures it is always to remind me that God will not give me more than I can handle and that everything we do or get in life happens for a reason. They usually bring a smile to my face. The last week has definitely been challenging but just like every other challenging time we will get through it, grow stronger as a family and move on.

Kaylie discovered the doggy door today. I wait for the day we find her halfway through it.

This is her favorite ball. It rattles when you shake it.

Today she got a new toy. This is her looking in the mirror.

My beautiful baby girl

Kaylie loves to climb up and look over the edge of the tub while the water is filling up. Today was the first time she acutally tub surfed and went from one end to the other. The gross thing was when she used the toilet to stay up. Yuck! I would not have put the last picture on but I thought her eyes looked so beautiful up against the blue curtain. Just promise me you will ignore the stuff behind it.

Just kidding!

On Monday when I talked with my pediatrician they told me to call back on Wednesday to let them know what the dietitian said so I did. When I mention that she had lost another 3 oz. the nurse said that she would call the GI doc. Surprisingly calm I asked if a few days would really make a big deal. I know...what was I thinking? Of course it was a big deal but with it being the last few days of school I really did not want to take off. The nurse told me I could come in for a weight check with her just to make sure the scale was accurate and that she was still planning on calling Dr. An just to "see" what he thought.

About an hour later I got a call from my doctor saying that Dr. An's office was going to call me to make an appointment for today. WHAT!?! I am not going to lie. The fact that they wanted to see her today vs. Wednesday worried me a little. OK, maybe a lota bit. The only good thing I had going my way was that my day was super crazy. I had a lot of meetings back to back to keep me from thinking about it. I definitely had a lot of nervous energy and being in meetings actually helped keep me calm.

When I got to the GI doctors office I took her in and put her on the scale. Unfortunately, the weight from yesterday was accurate. 13lbs 4oz. Damn! (sorry but that was how I felt!) The funny thing was when that number flashed up my first reaction was to tell the nurse that weight was good. I quickly rephrased that to say it was good that the scale from yesterday was accurate and she had not lost anymore weight. I was worried!

When doctor An walked in he immediately said he hoped I did not stress out because he moved up her appt. The first thing to pop in my head was, "Wouldn't you?" What came out was of course not! He told me that after he talked with her pediatrician they decided that he should bring her in now in case they needed to do something else because he was planning on going out of town right after my appt. the following week. This would give us a good week to try some things.

As we sat down he looked at her and said that my doctor was right she was TINY. That came out of his mouth several times. When he plotted her growth a wow came out of his mouth. Now if you have ever met this guy you would love him. He is so relaxed and enjoys cracking jokes. He is great with the babies and never seems to get overly dramatic about anything. This is the kind of doctor I need to be working with so the "wow" did not offend me. He was shocked with her growth or the lack their of. She had basically gone in a straight line from where she was in January. For those of you who know what a growth chart is supposed to do hers was not doing it. She is supposed to go in a curve and it is supposed to stay in the white. She was not in the white at all.

As we sat their talking he brought up the need to figure out why she is not eating. He asked if I thought it hurt, if she wasn't feeling well, if she choked or coughed while eating. When I told her she could eat stage 2's he said that was good because that meant she did not have problems with swallowing. Then he gave me 2 options and he was ok with either option.

Option 1: take prevacid to see if it was due to reflux and come back in 2 weeks

Option 2: Do a procedure called an Endoscopy to see if she has any type of diseases in her esophagus (ex: Celiac disease). This is a 10 minute procedure and they would be able to check a bunch of things but it would require them to put her under.

Knowing that I would feel miserable if I did option 2 and they found nothing first without trying the prevacid I chose option 1. My only concern was thinking 2 weeks would be too long. He told me two weeks is actually a short amount of time and that if it didn't work we could do the scope quickly. He then said that since I still have my original appt. for next Wednesday we will keep that and if she is still losing weight we will set up the scope.

I know that he is concerned but he was wonderful at making me stay calm. He is such a good doctor and keeps you level headed.

Please keep her in your prayers that she will get over what ever bug she has now and that she will EAT.

I am not crazy!

When I picked Kaylie up from daycare today they told me that she was on her 3rd outfit change for the day. The 1st set was the subject of a massive blowout. This never surprises me because we very rarely pick her up wearing the same outfit. She doesn't go often but when she does she does it right! The 2nd outfit was subject to a unexplained throw up. They were convinced she gagged herself with the cookie. I am convinced she choked. As they told me what had happened I couldn't help but laugh. This just goes to show I am not a crazy mom who is scared of their child choking. Their has been many times when I have felt as if they were pushing me to allow them to give her the food they were giving the other kids. They could not understand why I did not want it because she was grabbing for the other kids food. Now they now. I don't think they will ask me about it again. Hopefully when we come back in August we can show off our eating skills.

Today we met with the dietitian. Jason and I have been a little concerned because her illness has really affected her eating and with her already losing weight we knew we needed to get her eating fast. The dietitian weighed her and yet again she has lost weight. To give you an idea of why we are concerned here are a list of her weights.
2/1 - 11 lbs 4 oz
2/25 - 12 lbs
4/19 - 12lbs 15 oz
5/1 - 13 lbs 11 oz (wow...we almost gained a pound in less than 2 weeks)
5/9 - 13 lbs 9 oz (starting to crawl)
5/16 - 13 lbs 6 oz (crawling even more)
5/21 - 13lbs 10 oz (Woo Hoo...starting to gain/1 year appt)
5/29 - 13 lbs 7 oz (Doh! crawling everywhere...really figured this thing out. Likes mobility)
6/3 - 13 lbs 4 oz (We are going in the wrong direction. Since she has been sick she is refusing to eat. Thurs she ate 15 oz, Fri. 16 oz, Sat. 15 oz etc.)

In 5 months she has gained 2 lbs. I wish I could say the same for myself! I think the two of us need to switch roles.

Here is our new feeding plan. We are going to add more formula to her bottle increasing the calories. We will do this for a week and see if she can handle it. After that we are going to add canola oil/olive oil to her solids. If she decides she does not like this we will add benecalories which is a good source of calories to her food. She wants Kaylie to drink a minimum of 24 oz. a day. That is the amount she needs to get all of her nutrients and vitamins. We will also be monitored by the dietitian on a monthly basis.

The other thing we are planning on doing is seeing the GI doctor. He will also help us figure out what else we need to do and if their is a concern other than just not wanting to eat. I need to talk with her pulmonologist and figure out if the Advair is upsetting her stomach. I have kind of thought that but have forgotten to ask. I am not sure how they will now that. The correlation is not really their. The one good thing is that she refused to eat for daycare today. I know that sounds silly but yesterday was her first day back in awhile and she ate so well. I was worried it was just me. Today she refused to open her mouth for them as well. Phew! I now feel better. I thought I was going to have to keep her in daycare over the summer just so she would eat. =/

Tomorrow I have to call her pediatrician back and give him an update on what the dietitian said. From their they will decide if they feel the need to try and get her GI appt. to this week. With her losing more weight I am not sure but most likely it will not be until Wednesday. I do not think much will change between now and Wednesday. They did mention bringing her in tomorrow for a weight check to be consistent with their scales. I think I may do this just to make sure today's weight was accurate.

Better Late Than Never

I know this is a little late but I figured better late than never. Besides it is still May for another few hours. Considering she has been sick I think they turned out pretty good.

Buster and Kaylie - 13 lbs 7 oz. 25.5 in.

Look at that belly

Update

Yesterday I picked Kaylie up from daycare and when I got her home I realized she had a temp of a 102. I expected this because she had gotten her one year shots about a week ago. The only thing that made me worry was that she was having cold symptoms. This changed everything. This morning I took her in yet again. They are seriously starting to get to know us. That would be fine if the office didn't see over 10,000 patients.

Here are a few ways you know your child is sick too often:
* Kaylie started crying and the nurse looked at her and said she hadn't seen her cry before.
* The doctor walks in and says, "I just saw you last week for a well visit, what happened?"
* The doctor actually cracks jokes with you about how many times you have been in the office. I figure you can join in or cry. I choose to join in. =)
* Your doctor agrees with you when you say we have had a rough winter and continues by saying that my baby has been a little sicker than he would like. That's fantastic!
* The doctor doesn't tell you what to look for in regards to symptoms because you already know them.

I don't know what they are going to do when we are immune to everything and never see us again. Hopefully that will come sooner than later!

During her exam the doctor agreed that with the cold symptoms it ruled out the shots being the cause of the fever making it a virus. Ugh! I am so done with being sick. The poor thing needs a break! As of right now we just need to continue watching her and as long as her breathing stays under control and her cough doesn't get worse we are fine and the fever is just a fever.

Weight
In the past few weeks Kaylie has been losing weight. When we were in the middle of her month long illness we weighed her and she was at 13 lbs 11 oz. The next week she went to 13lbs 9oz. and the next week 13 lbs 6 oz. This stressed me out! Why was she losing weight. She was eating more than she had in awhile (a whooping 24 oz a day...I know she's a pig) considering one day she had a total of 8 oz but still gained weight. Now that she was eating why was she loosing weight?

One night as I was watching her I stood up and went into the kitchen and her comes my little butterball following me into the kitchen. From there I went into the kitchen and she followed me there. Duh! She is losing weight because she is now everywhere! This made me feel a little better. At her one year she had actually gained some and was now weighing in at 13lbs 10 oz. Good but not great. What do we need to do now? What will make us put on weight. After talking with ECI we decided to bring back the nutritionist. This is fine but I kind of feel like we have been there done that why waste my time. The other thing is when do we decide that the reason she is having trouble eating isn't due to something else. The speech therapist agreed with me and said that after she is better we may need to look at a feeding disability. We have made some progress but for the most part not enough. I decided that this would be something that I needed to talk to Dr. G. whenever I took her in next. I just didn't think it would be the next day.

Yet again Kaylie lost weight so it made the discussion with him easy. Today she weighed in at 13lbs 7 oz. Considering she is sick that is not bad but believe it or not she has actually been eating ok. She ate 24 oz yesterday. That is not any different than a day that she feels good. When I mentioned her weight he became concerned and immediately suggested we go back to the Gastrointerologist. We saw him right after we got out of the NICU but our last appt. was in January. She was gaining sufficient weight and drinking her bottles very well so she was no longer having what they call "failure to thrive." That is a term you hear frequently in the NICU and was a concern for us. That term came back up again today. As long as you continue to grow in proportion and you do not dip in your stats (in Kaylie's case off the chart) it is not a big deal. This time we dipped. Since February she has gained less than 2lbs. which is not good so we will be going back. I think I am making it sound worse than it probably really is. I figure their is a lot they can do for her. My doctor talked about a bunch of options that they could do. He said by going back to the GI doctor we will be able to figure out if their is more going on than just being a preemie and being small. He said they will look at her appetite as well as if their is a need for feeding therapy. We have our appt. schedule for the first week after school gets out. Hopefully he will respond in the carefree way he usually does and say she is perfectly fine and he is not concerned. That is what he did the first time we went in. I think that is wishful thinking. Pray that between now and the time she goes in she is healthy and will gain a good amount of weight. Also pray that she will be able to eat table foods without choking or freaking out over textures. I will update everyone once we find out more.