Just because

I found this scripture on another preemie mom's blog and thought it was perfect for how I feel right now.

But I have peace knowing the answers lie in heaven and I trust and believe that "God causes all things to work together for good to those who love God, to those who are called according to His purpose." Rom 8:28

I have lived my life with peace in the past two years knowing that everything happens for a reason and that no matter what I want, God has a plan for us. Our road maps are mapped out according to his plan. That is what keeps me moving from day to day. At times I may skip a few beats and miss a few steps but when all is said and done I come back to knowing that every time she hits a bump in the road God is already there to pick her up and carry her across it.

A bit of happiness...I think my precious little girl said "dog" today when she saw Jolie's dogs outside. I just about started to cry in joy.

Feeding Therapy Evaluation

Today we took Kaylie in for her feeding evaluation at Our Children's House of Baylor. This was a very difficult appointment to get. We made it 3 months ago and today was the earliest they could get us in. Here is a short recap...

*Under weight
*Not eating enough
*Texture issues
*Refluxing
*Concerns about growth

Does any of this sound any different to what we already knew?!? The only difference is how they are planning on treating this. Instead of coming to our house 4X's a month like ECI does we will go to them for intensive therapy 2X's a week. We will see an occupational therapist for sensory concerns, a dietitian, and a speech therapist. The occupational therapists goal will be to get her past some of her texture issues. They feel that if she will not touch things why would she eat them. Makes sense! The speech therapist will focus on feeding. During these sessions Kaylie will be taken away to do her therapy with out us. Our hopes are that she will eat for them and they can help eliminate the unnecessary behaviors that she is showing.

In regards to her diet...We are changing her formula making it 30 calories. Instead of 6 oz of water with 3 3/4 scoops of formula we are now going to be giving her 5 oz of water with 4 scoops of formula. The other thing we are going to do is add butter to her purees. They think this will go over better than vegetable oil. It will give her food better taste.

The Potential Bummer...If in a month we have not seen significant change in her eating and weight gain they will recommend a in hospital stay. My first thought was a few days will be fine if it takes care of the problem. Yeah...I was quickly informed that it will be a 4 week hospital stay!!!!!!!!!!! Yes, 4 weeks. The first week you can only visit at night. The second week you get to watch through a glass window. The 3rd week they teach you and the 4th week you feed her. Yippee! Let's do it tomorrow! Right now I can't even imagine it.

After we talked they quickly expressed their concern about the reflux. Their hopes are that the reflux could possibly be the main problem and if so taking care of that may actually fix everything else keeping us from even having to go to the next step. They also said that if we see any growth at all it will buy us time putting off this for hopefully good.

Thinking stressing about the 4 week thing was really the worst case scenario I called her GI doctor to talk to him. He is one of the most relaxed people you would meet and always tells me she is fine. The time we went 2 months with a negative weight gain he told me he was only medium worried. Since she gained weight his concern has gone down. This past six weeks we have been faced with another round of weight loss. She has gained very little weight and he has been some what reluctant to comment on it. Last week when I talked to him on the phone he told me not to worry until he saw her again. I think he was confident that starting her back on her appetite stimulant would help. Today she weighed 16 lbs. 2 oz. at the hospital. That was right after she had eaten a stage 1 banana and drank a bottle. This would most likely put her under 16 lbs. After bringing up the weight gain I told him what they were suggesting. He was glad to hear they were going to be working with her 2X's a week. When I told him about their thoughts for the 4 week "boot camp" as he calls it I could have bet he was going to tell me they were crazy. I was shocked when he agreed with them. What!!!!!!!!!!!! He has never been this quick to agree with things. He told me that if things do not improve she is going to have to do boot camp. He said it is the worst four weeks for a parent but the end result can be worth it. He said that this would be the step before looking at surgery. S-U-R-G-E-R-Y?!? Before it was just putting a tube in her nose, now it's surgery. Of course I want to do the less invasive before we do surgery. We go back to see him on Thursday. Nothing major will be decided for at least a month. That will give her enough time to see if the feeding therapy will actually work.

Several of her doctors have asked about her endocrine levels. After talking about it with my GI doctor I called my pediatrician to ask him about it. I talked with his head nurse and she said she would ask the doctor and call me back. When she called back she said she made me an appointment with the endocrinologist. Their first available appointment was in March but as she was talking to them someone called and cancelled so she snagged that date. I know God was watching over us at that point. Hopefully, this will just add another piece to the puzzle. Even if everything is ok it will help rule things out.

The thing I can do to help...I have been told by her GI doctor that I can give her her periactin (appetite stimulant) 1 tsp 2X's a day. I have only been giving it 1 X a day because it causes severe drowsiness. I have been against this because I feel like it is taking away a part of her childhood. I am going to have to let this go. I feel like not doing this will bring about more guilt than doing this. I will always wonder what could have happened by doing this so tomorrow I will start 2X's a day and hope my child does not sleep her days away.

My main mind block comes with the fact that when you look at her you would never know she has anything going on. We have come so far and accomplished so many things I can not grasp the nature of what we are talking about. Sometimes I think maybe the doctors are just trying to find a way to "fix" her and that maybe she really isn't that bad. I then have to step back and know that they would not do something "just because." I have to remember that if they thought it was just two crazy over protective parents trying to fix something that didn't need to be fixed we would not be seeing all of these doctors and specialists.

Ultimately I know things could be a millions times worse and for that not be where we are I am grateful.

MY PRAYER REQUEST: With everything above we are asking for your prayers. Please pray that Kaylie will find the strength to eat or drink the amount she needs to thrive. Please pray that things will click for her and she will over come what ever it is that is keeping her from wanting to eat and grow. We also ask that in addition to praying for her health you pray that this will not effect who she is in the future. My biggest fear is that all of these tests and procedures are going to shape her character for the worse. After that if you can we would like prayers for Jason and I to have the strength to make it through this next stage. This next stage has the potential to be a difficult one (if we have to go to the in treatment therapy) for us and we may need a lot of support from all of our friends and family. Finally, I would like to ask that you pray for us as a family.

Jason and I are going to remain positive and hope that in a month we can report nothing but good news putting all of this behind us.

Buster and Kaylie

First things first...my child has conquered the cracks. I put her down and walked to get the mail and watched as she reluctantly shimmed across one crack. She looked traumatized. Once she crossed over she looked as if she had conquered the world. After that she walked all the way up to me and then down the sidewalk. Woo Hoo!

This month I figured out a new trick with her and her paci to get her to smile. I put her in place and quickly pulled it out. Every time I did that she would smile at least a half a smile. If you click on the first picture you can see her bottom tooth.

If you have forgotten what she looks like with Buster you can go back to older months to compare. I think March has one of her first ones in it.







In other news...Here is why her tongue has been hanging out for so long. We have four on the top and one lonely one on the bottom. The second one is there but it is taking its sweet time!



Just thought this one was cute.

Cracks

My child is afraid of crossing over the cracks in the sidewalk. Since she has just started walking I tend to put her down on the side walk while I get the mail. The first few time she has just stood there looking around. Today she actually started walking around. At first I thought she was trying to play and get away from me. As she walked away from me I followed and she quickly turned around and walked to the other side. This continued for several turns. I finally stood there and motioned for her to come to me but she turned yet again. As I watched her she went back and forth, back and forth. She turned around so many times she began to get flustered. I reached out for her, grabbed her hand and attempted to pull her towards me across the crack. She was so mad that I was trying to force her across this crack she sat down, threw herself on the floor and refused to move. All said and done I got her to cross over one crack. Even though it was somewhat strange I couldn't help but laugh. What did the cracks in the sidewalk ever do to her?!?

In other news...Jason took Kaylie to get allergy tested. After everything we went through the first time I was done. We ended up doing the skin testing. Surprisingly, this was nothing compared to the blood testing. All said and done she is not allergic to anything they tested for. We were not able to test for the dyes or the citrus. We are going to test for that on our own. Of course, this news is good but I can't help but ask myself, "now what?" I so badly what to know what I can do to get her over this feeding and weight issue. I just don't want her to have to go through anything that is unnecessary. At this point, I think I will have the doctor put her back on prevacid until we see him in a few weeks.

Teeth...She now has 5 teeth. She looks absolutely adorable. She has one on the bottom and 4 on the top. Unless she smiles it is hard to see the top ones. They are huge but are not all the way in making it look like she only has one tooth. With all of this we are pretty sure this has been part of why she has not been eating. Yesterday and today she has drank a good amount of her bottle. This is great. Hopefully, this will help her put on some weight. I have started pulling back out some of her 3 to 6 month winter clothes and even though she has not surpassed this size in weight we are starting to grow out of them in height. I think I will have to invest in adjustable pants.

My hand...When I put my hand down for Kaylie she will grab it and walk with me. Jason and I try to let her walk more than being carried. I find that I have so much more patience than I used to. Before I had kids I couldn't have imagined walking at a snails pace so my baby girl could get practice in following someone else.

Speech...In the last few days Kaylie has started talking like crazy. Although she is not saying any words her sounds have grown significantly. Before she was only saying her basic sounds putting her at a 6 to 9 month for communication. She was not able to understand simple commands and smiled when ever you told her to do something. Now she understands, "come here" and "no no." Even though everything is da da she uses different sounds for different things. When Jason comes home she will stand up and walk towards the door whispering da da. She then stands their patiently with the dogs for Jason to com in. When she sees the dogs it is more of a dah dah with an "h" sound. How cute!

Motor...Kaylie is doing fantastically well with her motor skills. In October we are going to discontinue her occupational therapy goals putting the major threat of cerebral palsy behind us. Even if she did have it it is so mild it is not even worth checking for it. She has come so far. The last few days Kaylie has loved waving to any one including houses as we drive by in her pink car. Usually she will do it when you are not looking. The minute you turn back around she stops.

Dancing...The last few days Kaylie has started to dance. When I got to daycare today they told me to look in the window. All of the babies were staring at their teacher. Several were dancing but Kaylie was DANCING!!!! She was bopping up and down while clapping. When she gets really excited she stick her bottom out, leans down and bobs. I am going to try and get a video for you to see.

Overall, I have to say things are going well. We are praying for a weekend free of illness. At least one person in our family has been sick for the past month. I am ready for a break.

Bad, Bad, Bad, Bad, Bad!

Today I took Kaylie to the allergist. To begin with let me say I was not looking forward to this. I knew that we were going to have to have blood drawn and I was dreading it. The allergist gave us the form to get her blood drawn and off we went. I decided to take her in this afternoon so we could get the results back before her next GI and pulmonologist appt. Both of them are waiting for these results and so I felt the need to do it now in fear that I would wait and then forget. I seem to be doing that a lot lately. I handed her the form and she just stared at Kaylie. Then she says..."all of this for her?!?" Not what a parent wants to hear. She continued to look at the form in disbelief before asking me if I knew how much blood this was going to take. Seriously?!? Do you think I know?!? She tells me to bring her back so she can "take a look". By now I am confident this is going to end happily. She checks her veins, tells me she is probably going to have to be poked more than once and that before she would do it she was going to call her supervisor to help. The trick was her supervisor wasn't even there. Kaylie and I go back into the waiting room and I attempt to call the allergist to see if they knew how much blood was going to be drawn. With no success I convinced the lady to contact them herself. She gets a hold of them and problem solved. Now I feel a little better about this.

Once her supervisor gets there I take Kaylie back and she has her lay down on the table. With all of the doctors appts. this poor thing has been too she knew something was going to happen immediately. She knows who the doctors are and does not like them. Can you blame her? Before they had even stuck her she started screaming. I was not able to watch but as I held her I knew when it went in by the increased volume of her scream. After about 30 secs to a min I actually looked to see how much more they needed to see that they had not gotten any. Are you kidding me!!!!!!! At that moment she was screaming so hard she started choking. They did not seem to be as alarmed by this as I was. I quickly scooped her up and held her tight.

Determined to get this so we would not have to go through this again I insisted on letting me hold her. Skeptical they gave in. As I held her she again began to scream. She was crying so hard her entire body was turning bright red. They poked her, she started with her ear piercing scream. Next thing I knew she threw up all over me. They pulled it out, said they weren't going to do it, and that we would need to come back another day. As we cleaned her up she cried and I cried with her. This is the second time I have had to do something for her that has made me hurt this bad. I cry as I write this that is how bad it was. I scooped her up, held her tight, told them I would probably not be back anytime soon, and left. As I put her in her car seat she started to cry so I took her out and let her walk around. Anything to give her a sense of piece and relaxation.

On our way home we got a call from the allergists office. They had spoken to the lab and called us. I was impressed with this. She asked me how I was doing and after I told her I was traumitized she told me the alternative. This would be the skin testing. Originally, I did not want to do this but considering the alternative I will take it. I think Jason is going to take her. The difference is the skin testing will give us answers in 15 minutes vs. 10 days. I just thought the blood tests would have been less painful. I am hoping that is not the case.

The one bad thing about not being able to get the blood test. In addition to the allergy testing they were going to check her immune system. The pulmonologist had talked about this as well so I was excited to see the results. This test would tell us if she was lacking in some essential things to help her fight off infection. This would explain why she is always sick. They have said this is something that can happen with a preemie. At some point we will have to do this. We will just have to wait until the memory of today has worn off.

Ah Choo!

First things first...It looks like we have been approved for a second year of synagis. Thank you!!!!!!!!!!!!! Now I can relax some and not fear the worst this cold and flu season. I think I would have had to put her in a bubble without them!

For the most part our week has been completely off. I know it is common for day care babies to get sick but with Kaylie being a preemie she gets sick more often. In the past month Kaylie has already been sick twice. No mommy guilt their! Even though she started with a cold on Friday I wasn't convinced she was actually sick. It was obvious by all the drooling that her 4th tooth was coming in any day. It was so far down it looked like it was in but if you touched it you quickly realized by the screaming baby that it had not broken the skin. With her previous few teeth she had the same symptoms so through my careful data collection we would soon find out if this was the case. I was quickly proven wrong when she spiked a 102.8 Sunday night. On Monday I had the luxury of staying home with her. It is so nice to finally have sick/vacation days again. Her fever was gone but her cough was awful and she was incredibly hoarse. Every time she coughed she would cry. At one point I even cried with her. I took her to the doctor just in case. The good news was their was nothing happening that I didn't already suspect. He said her lungs didn't have much in them and that it was most likely a bug. We talked about watching out for pneumonia by continuing with her breathing treatments and went about our merry way. The bad news...she has lost 7 oz. since she has started walking putting her back to her well baby weight check that was done a month before. Urg! Apparently, my child is not willing to let go of her 3 to 6 month clothes. I think she is trying to keep me from worrying that the clothes I just bought will be to small by the winter.

The last week has been crazy. School is absolutely kicking my behind. Usually our year starts out slow but this year we are already everywhere. With this being our "slow" time of the year I am scared to see what the rest of the year will be like. On the positive side...my day goes really fast and my kids this year are wonderful.

Here are some other pictures of the past week.

We were going to wait to get her this until Christmas but with the chance of major rain this past Saturday we decided to get it for her. She enjoyed it but I think it may have to go away for awhile. Right now we think it might be a little to advanced for her.



I love this picture. She looks so sweet and innocent.

Last week I would pick Kaylie up from day care and be surprised by the things they would tell me. Apparently, my child has split personalities. They tell me how feisty she is and how she tries to run things around the infant 2 room. It surprises me because she does not do these things at home. At nap time she refuses to go down. I got to watch first hand my child attempt to swim across the mattress in an attempt to fool Mrs. Ricki into putting her down for a nap. Usually Kaylie loses the battle. With all of this we realized she is ready to move up. I think these behaviors are surfacing due to boredom. She is the oldest both birth and corrected and it is time. The only thing is figuring out the logistics to her meal times. When they move to toddler 1 they are supposed to be on sippy cups and self feeding. They will not hold Kaylie back because of this but we still have to figure out how it will work. Once she moves up she will be required to wear shoes so I took advantage of this and went shopping. Here is a picture of her first pair of Keds.



In the past we have not had much luck with crayons. Instead of coloring with them she usually eats them. This time she actually played with them for a few minutes before eating them. Her part of the drawing was the little dots on the paper. I did the rest.




I was zoned out for a few seconds this afternoon and before I could realize what was going on I had an empty box. She was nice enough to put them all back in again just to take them back out.

I'm so sorry!!!

Dear Kaylie,

When you look back on this picture 20 years from now please remember, I tried my best!

The before...



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The after...again I am sorry!


I know it may look like I cut a lot, but I only cut the long part that was hanging between her eyes making her look like Elvis. I think I should have left it hanging! It looked a little better when I put a bow in it.

A year

September 1st, 2007
After 3months, 2 weeks, and 1 day Kaylie Marie
Macmurphy has come home (6 lbs, 7 oz. 20 inches). We
were discharged at 11:30 and introduced Kaylie to the
outside world 10 minutes later. The look in her eyes
and on her face was irreplaceable. To see her take in
everything for the first time was the most precious
thing for a mother to experience. After seeing her
reaction it makes me appreciate even more the beauty
behind this crazy world God has created for us.

Jason and I can never say it it enough...thank you!!!!
Thank you for helping us make it through this!
Without all the kind words, thoughts, and prayers the
mountain we had to climb to get to the end might have
been impossible. Each and everyone of you has made a
difference in my life and for that I thank you.









A year ago today, Kaylie Marie Macmurphy left Plano Presby. to start a new chapter in her life. The first part is the email that I sent out right after Kaylie came home. I decided to include this because their are so many parts that I still feel the way I did when I wrote this.

Kaylie continues to amaze me. Her love for life is beautiful. Every time she experiences something new she always sits back and watches. No matter where you are she is always taking in the beauty that God has created. Her wonder and creativity never cease to amaze me. I feel so blessed to have the opportunity to watch God's marvelous work at hand. Each day for her holds a new adventure.

The second part of this email is also still true. Without the support from our friends and family we would not have made it through this past year. It was by no means an easy year. In fact it was probably one of the hardest years of my life. We went through many ups and downs and through it all you were their to support us, love on us, and at times even carry us. We made it through this year because we are loved just as much as Kaylie and for that we thank you. I know that people wonder when we will get over what has happened. I wish I could say that I am over it but I do not think I will ever truly be over it. What I can say is that I am now at peace with it. September 1st was the last major milestone for me. Now I feel as if I can completely move on.

Here are some pictures from today. She loves her new car. Anytime you turn around she is sitting in it.