2nd Birthday for Gracie

This weekend our little princess turned TWO years old. She absolutely loves Dora and that was her first pick when asked what she wanted the theme of her party to be. We invited some friends and neighbors for a fun filled afternoon. The kids enjoyed jumping in the jumping castle and hitting the pinata. Gracie loved every bit of it and showed her excitement by her inconsistent screaming. Eric and I crack up at how much of a girly girl she is. Whenever she gets excited, she just starts screaming in pure glee. All last week, Ethan would remind her that her birthday party was coming up every time we got a box in the mail. She would just get excited and would start asking when she could open her presents and if there was a cake. If I could speak for Gracie, I think it was worth the wait!

Allowing Mommy a picture in the jumping castle.

Blowing the candles out

Yummy!

Wearing her Dora earrings that her BFF Gabrielle
gave her to wear on her special day.

Daddy and Gracie

Presents!!!

Lexie's Two Months Old

Last Tuesday, Lexie turned two months old!!! Yesterday we made our way down to Wilford Hall for her appointment with the neurologist and her 2 month baby check up. When I do think about it, it does feel like she has only been with us two months but dealing with everything else makes me wonder if 10 months have passed. Her neurologist went over the CT scan from before surgery and the CT scan after surgery. He showed us the areas were there is improvement and expects more improvement as the year goes on. From my opinion, you can see a difference. It is not a HUGE difference but seeing how it is so early, it is still a difference. In about a year she will have another CT scan and then we will be able to see if any more changes have occurred. I also wanted to know the area of the brain that she is missing and how it will affect her. Through science we know which parts of the brain do certain things so I wanted to know what to expect. Well, this is where it gets tricky because he said the area of the brain that is gone is apart of the motor category. However, he has said that it is not a given that there will be certain things she can/cannot do. Since the newborn brain is still growing and changing he doesn’t know if there is some re-wiring being done or if cells have implanted elsewhere. He said if an adult would have this brain injury, he could give a definite prognosis but since the brain is changing in a newborn….he is well….clueless. We like him nonetheless though. Plus, her neurosurgeon is just surprised that she is able to move all four of her extremities so we are just going to sit back and watch her. But, I should say the neurosurgeon is a strong willed pessimist and her neurologist seems like the opposite.

After that appointment we made our way down to her 2 month well baby check-up. She weighs 7lbs 12oz which means she has gained three pounds exactly since she has been born. She measured 20.6 inches long and screamed her little lungs off when she got her three shots. The doctor seemed impressed when Lexie showed her how she can pick her head up when placed on her stomach. She said that Lexie seems to be acting like a typical 2 month baby that was born premature, which brings me to a personal choice I have made. I will not be posting what things Lexie may be behind on or just not reaching on the milestone chart. We only want to look at the positive and I will happily post all of her little achievements like I have been doing with Ethan and Gracie.

Finally, I know many of our friends and family worry on how we are doing and I know a few are just waiting for us to lose it. But, to be honest we are doing better than expected. We know things could be much worse and it now seems quite normal to us. We never regret giving her the life she so much deserves and despite some comments, she does and will continue to live a happy life. We don’t feel the burden or resentment that we were afraid of. Don’t get me wrong, I still think hydrocephalus is one of the most horrible words I have ever heard in my life but if it comes with Lexie, we will take it. I really don’t even notice her shunt when I look at her. I know some mothers of special children don’t like it when people stare at their little ones but I don’t mind it one bit. I feel that the longer they stare at her and her beautiful face they will see how much she is loved and how much love she brings to our family.

He Said, She Said

Both of the kids were coloring when this conversation took place:
Ethan: Gracie, am I a good brother or a mean brother?
Gracie: You Ethan.
Ethan: I know that but am I a good brother or a mean brother?
Gracie: Uughhh, you good brother!
Ethan: Thanks! I knew it.

Whenever Gracie starts to get on her brothers nerves, he always tells her "Your freaking me out Gracie. You are freaking me out".

We were playing outside and Gracie went to sit on one of the rocking chairs. Ethan hightails it over there, sits in the other one and says "It has been a really long day, huh Gracie. Let's rest"

When Ethan's Grandfather was visiting, he asked Ethan if he was a tough guy and Ethan said "Yes". Then he asked him who was the toughest guy in our house and Ethan replied with "Mom"!


After bath one night, Ethan was trying to explain to me how he wanted his hair cut.
Ethan: I want a mohawk like the Black Eyed Peas.
Mom: Like WHO?
Ethan: The Black Eyed Peas that sing It's going to be a good night
Mom: When did you see all this?
Ethan: Dad showed me on You Tube!


One of Eric's favorite shows is COPS and he is often reminded in front of the kids that it is inappropriate for them to watch. After I left the house one night, Ethan turns to his dad and says "Dad, Mom went to Wal-mart so we can watch COPS now". We are going to need to discuss doing whats right regardless if mom is present or not.

She's so cute......

.....I could just eat her up!

Tummy Time

Lexie's Therapist, Cheri has been putting her on her tummy and has been impressed with how much she moves her head. We have to do it before she eats though because that is when she is the most active. Unfortunately she doesn't like to wait to eat so she gets a little grumpy.

"Welcome to Holland"

By Emily Perl Kingsley, 1987. All rights reserved.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Hanging with Gracie

Tid Bits

Lexie likes to sleep on her left side.
I often find her rolling her body over to lay on her left side.
She is vocal and when awake, she is either grunting or cooing.
She has a raspberry birthmark/spot on the tip of her nose.
The only time she uses her lungs is at night. Rarely cries during the day.
When naked, she reminds us of a frog laying on its back.
Doesn't mind tummy time and will even move her legs back and forth.
Seems to sleep better during the day when it is loud than at night.
But once asleep she only wakes up once a night.
She has dark hair and it is already looking wild and out of control.
She brings us more joy and happiness than we ever imagined.

Precious Hands and Feet

Ethan, Gracie and Lexie

Gracie, Lexie and Ethan

Lexie's tiny foot

E&G

Here is a little video of Ethan and Gracie goofing off. The have been doing so great with Lexie and I couldn’t of asked for better helpers. The first day we brought Lexie home, I was worried because Gracie seemed to be having a hard time sharing Mommy and Daddy but after that day she has been great. I wasn’t worried about Ethan and he will even let Gracie know when she is crossing the whole gentle boundaries. You know the whole let me cover the baby with a blanket but ends up covering her entire face kind of thing. When we first brought Lexie home, Gracie was excited to meet her and kept telling us, “Put on the floor, PLAY! PLAY!” So these past couple of weeks I have been really trying to fend Gracie off because she wants to treat Lexie like she is one of her baby dolls. Both she and Ethan enjoy talking to her and holding her little hands. Gracie likes to tickle her tummy and whenever she hears Lexie start to cry she says, “ooooh Lexieeee”.

High Hopes

Last week Eric, Lexie, and I flew down to North Carolina for a couple of days. We were there to get a Stem Cell infusion for Lexie at the Children Hospital at Duke University. All of Lexie's medical care is here in San Antonio but this is something that is not offered here because it is still in the trial stage. Our doctors here are a little skeptical of this "experimental" procedure but if it could possibly help Lexie in the long run we decided it was worth it. Seeing how it is experimental our insurance does not cover this procedure and it can get quite pricey. I didn't care what price they told me, her health is the most important thing right now. Plus, if we didn't get it done, I will always question if she did have it how would her life be different.

We saved the umbilical cord from Lexie's birth and sent it to Duke University where Dr. Kurtzberg collects the blood/stem cells that is contained in the umbilical cord. These types of cells are special because they are used as "building blocks" in the body and do the repair work. They are infused back into the body through an IV. It takes about 15 minutes and doesn't require surgery. The infusion can't cure the hydrocephalus but it may be able to help replace the cells that were damaged due to the pressure in the womb. There are no guarantees and we will never know if it has helped her but just knowing we may of helped her is good enough for me. Also, there is no risk because she is basically having her own cells put back in. It is her blood.

One more thing I wanted to share with you is a little clip that came to our attention the night before her infusion. Eric and I were watching TV at the hotel and this commercial comes on. After it was over Eric and I totally felt it was a sign. We both started laughing when it was over because it was a little eerie seeing where we were.....Stem Cell Research.

**2nd Stem Cell 12/2010 & 3rd and Final stem cell Summer 2011****

Dr. Kurtzberg is in the blue

Us with Lexie during the transfusion.

Playing peek-a-boo with us

Showing off her wings.

Grandpa and Grandma Haut came in to watch Gracie and Ethan while we went to North Carolina. The kids have had a full month of being spoiled by all of their grandparents.

Rub- a- Dub- Dub

Here are some pics of Lexie's 1st bath at home and the kids with Papo Dan and Grandma Teresa

Lexie

Coming home from the hospital

Snuggling with Daddy

Dreaming away

4th Birthday for Ethan

Our big boy turned 4 years old this weekend and we celebrated with a family party. We all chowed down on pizza, cake and ice cream. For the past couple of months he has been requesting that I make him a soccer cake. I tried to get him to change his mind because I am not a baker but he knew that we owned a soccer cake pan and was set on having that as his cake. I tried my hardest and it didn't quite come out like I had hoped but he loved it and thought it looked really cool. It seemed like it made his day and that is what really matters.

Soccer ball cake sitting in grass

Ethan sucking the icing off of the candles and showing me how old he is.

Gracie really liking the icing

Homeward Bound!!

Tomorrow Miss Lexie will be coming home!!!! We are so excited and just can't wait. Ethan is the really excited because he has been impatiently waiting to meet her. He doesn't like the fact that kids are not allowed in the NICU so this will make his day. She got her feeding tube taken out a couple days ago and has been doing great with her feedings.

I am nervous because she is so small and barely weighs 5lbs. I have never had a baby that small so hopefully I won't break her. We even had to go and buy a new car seat. We brought it in for a test run and it wouldn't even hold her in. The buckle had at least 5 inches between her and the seat belt. It was swallowing her whole which made me realize how little she is.

Grandma Margie holding her 10th Grand baby!

Of course, we don't want to leave the big sister and big brother out!

Recovery

The shunt surgery went smoothly and the doctors were happy to tell us that they didn't have any complications. Tomorrow she will be getting a CT scan to ensure everything was placed in the correct place. She won't be getting an MRI for a couple months which by then we should see if placing the shunt has made a positive impact. We were able to visit with her afterward and she looked really good. Besides her bald spot on her head and the band aid where the stitches are she seemed surprisingly alert and was looking around.

The doctor said that while he was in there he did look around and confirmed that she is missing some parts of her brain. We asked him what prognosis he expects and we still did not get a solid answer. He says that it is not what he would like to see but to pinpoint how it will affect her is not something he can tell us. The only way is to just watch her grow and take everything as it comes to us. They basically are just as clueless as we are.

Despite everything that we have been through this month, we just want her to come home. The only thing keeping her from coming home is her feedings. They want to make sure she can handle a bottle at every feeding. I think it is because she is still a preemie and it is just going to take her a little longer to get a handle on it.

We want to thank everyone for your warm wishes and all of your prayers. We know that God has a plan for us and can only hope for the best.

Big Day

The thing in her nose is a feeding tube. She gets every other feeding through it because she starts to get too tired when she has to use all of her strength to drink out of a bottle. Sometimes it takes her 10 minutes to down a bottle and then other times she has the hardest time staying awake.

On Tuesday Eric and I meet with the Neurologist, Neurosurgeon and the Pediatric NICU doctor. Eric and I were extremely nervous about meeting with these doctors but it had to be done. Especially since we have been getting different diagnosis/prognosis from all of them. It helped having them in the same room where they were able to discuss her issues and basically add their expertise. We were shown the actual MRI pictures, the fetal MRI pictures that were taken while she was in my stomach and the ultrasound pictures. Now I first have to explain that from the very beginning we have been given a 50/50 chance and the majority of our questions are answered with "We just don't know". From the images that they showed us we can see the sides of the brain and then the middle area were the fluid filled ventricles are. As I stated before, the Neurosurgeon didn't seem too keen on putting a shunt in and was able to explain his reason with the MRI images. He is basically stuck in the middle on whether to place the shunt in. First, we can tell there is too much fluid and that there is tension in the brain so a shunt is probably needed but on the other hand he doesn't think there is enough tension which leads him to conclude that this is the worst it is going to get and a shunt which is known to fail a lot will lead to unnecessary surgeries in the future. However, he has shown us that a part of her brain is missing on the MRI but appears to be on the prenatal MRI. He thinks it is due to the fluid pushing it out of the way which makes a shunt a good idea. He had asked two other neurosurgeons to weigh on it and one was all for the shunt and the other said to hold off until it looks like the fluid is increasing.

We were disappointed because we thought the doctors would of had a clear plan on what to do and which plan had the best outcome for Lexie. However, we were told that WE would be the ones to decide on whether to get the shunt with the majority of our questions being answered with "We just don't know". Eric and I have been going back and forth about this and we have weighed each option to basically find the lesser evil. You have no idea how hard it was for us to come to a decision not being sure if it is the best decision. It is agonizing seeing how this is our daughters life and the horrible feeling that we will endure if we happen to pick the wrong option. I deeply believe in my gut that we are choosing the best option for her and one that we can live with. Years down the road, I know we will always question what her life would of been like if we would of placed a shunt in her. Therefore, our little girl will be having surgery tomorrow where a shunt will placed in her teeny tiny head. We pray that we have made the best decision for her and only hope that she agrees with us. We know that Lexie will in no way be a "normal" child with a "normal" life. We are prepared for any mental/physical disabilities she may have no matter how sever they may be but are just thankful that we get to enjoy each day with her hoping for the best. Because as you can tell from her pictures she is just too cute to resist!

Little Sister Update

I had a routine doctors appointment on Tuesday the 22nd and thought it was going to be a pretty normal day. However, after being seen by my doctor he decided that we needed to get her out because he was worried that her head size was getting to big. I would've preferred to keep her in a little longer but I trust my doctor so that night at 10:30 I was induced. I thought seeing how I went into labor a couple weeks ago, it was going to be a quick labor. Well, Lexie thought otherwise because 20 hours later, I hadn't dilated any more than when I came in. My doctor brought in the c-section paperwork and we begin the process for a c-section. We were going to go through with it until a urgent c-section came in and mine was delayed an hour. Well, Lexie must have heard the news because by the time it was my turn she was ready to make her debut. Within a couple of minutes she graced us with her presence. When I first saw her, I have to admit I was surprised by how normal she looked. Her head had the normal newborn look to it so I breathed a sigh of relief. She started to cry that wonderful newborn cry when all of their hands started touching her. I thought that the NICU team was going to take her away before I got to hold her but they actually let us hold her for quite awhile because she was breathing so well on her own. It was such a relief to get to hold her and actually see her for myself. I got so used to the ultrasound pictures that it was great to finally meet her and touch her.

Unfortunately, she had to go straight to the NICU and is set to stay there until the doctors and us decide what will be the best route to take regarding her hydrocephalus. I was able to come home on Christmas Eve but Lexie had to spend Christmas in the hospital. Leaving her at the hospital had to of been the hardest thing I have ever done as a mother. It felt horrible that she couldn't come with us but I just had to remind myself that she will be home soon. Two days ago was my first time holding her since she was born and then yesterday I got to feed her for the first time. When you see a baby in the incubator you think of a very sick baby, but she acts just like a newborn. She was awake and moving her head all around. She wails her arms and kicks her legs when you take too long with her bottle and then once you put it in her mouth she starts sucking away. The nurse said that if it wasn't for the hydro, Lexie would've of probably been in the NICU for a couple days but then eventually transferred out. We actually don't know when Lexie will be able to come home. She has gotten an MRI and tomorrow a Geneticist will be taking some blood to complete some labs. Once everything is back, will be meeting with the neurologist to see what action will be taken. The neurologist that we have meet with is unsure on whether the fluid is taking actual brain space or is just filling up space where no brain was present (genetic issue). I know he is leaning toward the second one and if that is his decision then he will not agree to place a shunt seeing how it will not change the outcome. Thankfully, my doctor and I don't agree with him. We have every ultrasound to show him that the fluid started out moderate and then got significant which shows the brain being a little squished to really squished. I will push to have a shunt placed and hopefully the doctor will listen. We will probably meet with him sometime next week and I will keep you updated. I know this is a lot of info and you should see what my face looks like when those fancy doctors start using those big words and all but we are trying our best to keep up!

Finally, I would like to thank all of our friends here in San Antonio. They all have been helpful from watching our other two little ones to providing us with meals. We feel so blessed that we are surrounded by such wonderful people and they will probably never know what a difference they have made during such a stressful time. You guys rock!