Wednesday, September 22, 2010

Lily Cate one day old...1lb. 6oz.
Lily year old...14lbs

Lily Cate...two years old...22lbs

I can't even believe that my tiny miracle baby is two years old today! I have been so emotional leading up to this day. A part of me is sad because my last baby is getting so big and growing up so fast. And another part of me is so filled with amazement at God's grace and work in Lily's short life. This morning I couldn't even get through my prayers without just breaking down. I was so overwhelmed with how many people sent messages remembering it was Lily's birthday before I even mentioned it. It just reminded me of how her tiny beginning was such a testimony of God's grace and mercy and how even the tiniest and youngest person can be used by God.

It really seems like yesterday that this whole saga began. Being put on bed rest after having a recovery cerclage placed and spending several days in the hospital on that lovely magnesium drip. I remember being in bed and thinking I can do this. Whatever it takes I can keep her in as long as she needs to be. Then barely two weeks later Houston gets hit with a hurricane and everything is a mess and so crazy. I remember going to the doctors office for my first appointment after being on bed rest and knowing that something was wrong but never would have dreamed it was that wrong. I will absolutely never forget the doctor looking at me after examining me and saying her bag of water was coming through my cerclage and asking what I wanted to do. I remember thinking what do you mean what do I want to do...I want to keep her. Whatever it takes I'll do it.

I'll never forget the high risk doctor assigned to me at the hospital downtown saying that he would be surprised if I made it another day without having her and how annoyed I was at his negative attitude. I will also never forget the NICU doctor/resident coming and going over statistics on Lily's chances of surviving being born this early. As soon as he left the room I told Greg to throw it away! I wish I could show him how wrong he was!!!

I remember seeing her for the first time and thinking am I dreaming? Is this really my baby? I personally was really sick/weak at the time (although I didn't know it yet) and it was just so hard to process anything those first few weeks. But somehow I never doubted that God was with her and that I would take her home!

And now my feisty 1lb 6oz. baby is almost 22lbs and absolutely doing amazing. She is talking like crazy and even started asking "Why". Her favorite phrases are "I do it" and "I got it." She is fearless, an amazing climber, very funny, she loves being outside and getting dirty and absolutely LOVES her big brother. She is finally on the growth charts and has blown every medical professionals mind at how well she looks and how well she has developed. There is no other explanation except that she is a miracle of our loving, healing, powerful God. To Him be the Glory forever and ever!

Tuesday, September 14, 2010

Prayers for Lily tomorrow

Lily following big brother to her first day of preschool!
Thomas was way too cool for pictures with little sis!

Lily's classic face!

She is seriously too much!
Almost 2 going on 16!
Lily started preschool one day a week last week. She did great and made it through the day without vomiting at school! I was so excited to pick her up and see that she was in the same outfit she started in!! She has great loving teachers. I know she is going to love it!
Tomorrow we go back to Duke for Lily's endoscopy. Please pray that everything goes smoothly and for the doctor and nurses to be compassionate and knowledgeable and to be precise. She will be under general anesthesia which is always a little scary but the worst part is that she can't eat anything until after!
I will update as soon as we know anything. Thanks so much for your prayers!

Tuesday, September 7, 2010

Myrtle Beach trip

This past weekend we went on our first family of four vacation. All of our vacations in the past have been with extended family or friends. It was also our first time to visit Myrtle Beach. It was so nice to only live 3 1/2 hours away from a beach but it simply isn't the same as the Gulf Coast beaches that we are used to. We had a great time and the kids loved the beach and pools. It was really hard to get used to the dark sand and the changing tides each day. We learned our lesson the first day about setting up on the beach too close to the water. By the tame we came back out after the kid's naps the water was coming up under our chairs! Luckily all of the kids toys were still there and nothing got too wet! I guess we should have caught on when we saw the rented chairs so far back on the beach! The second day we learned our lesson and just started way back and had a long walk to the water the first half of the day.

Thomas enjoying the water...

Lily's signature "cheese" face...

Thomas kissing a little fish that some boys caught and gave to him...

This one cracks me up...Lily saying, "I don't know"

Lily's sweet face again...

Our two silly monkeys...

Thomas' first day of pre-K

Today Thomas started Pre-K. He was excited but not nearly as excited as I was! It really didn't phase him. He wasn't nervous or sad when I left. He just went right in and started playing. He went to the same school last year so I think that helped.

I love this picture...Lily just adores her big brother!
She missed him this morning when we dropped him off. She would look at his seat in the car and say, "where bubby"?

My big stud walking to the car...

Once we got to school he was too cool for pictures!
He was not very interested in me anymore...ready to start his day!
He had a great first day. Thursday Lily will be going for her first day too!

Sunday, September 5, 2010

First, thank you all so much for praying for Lily's appointment on Thursday. They were definitely felt. Overall it was a a great experience from the moment we got there until the moment we left. It was a really long day but Lily did great.

I really like the new GI doctor. I felt like he was thinking outside the "reflux box" which is all I wanted someone to do. He also is not an experimental medicine pusher which I also agree with and like. He had several different theories as to why she is vomiting so much but our next step is for Lily to have an endoscopy on September 15th to check for eosinophilic esophagitis. To find out more about it click here. I am not very good at explaining it.

Her appointment with the high risk developmental clinic went amazing. She saw a child psychologist who did several types of testing to see what developmental age Lily was currently at. It wasn't a big surprise that Lily passed with flying colors. Several times I was actually moved to tears watching her to see how God not only allowed her to survive her early arrival but how He has grown her and developed her in such a way that the ONLY explanation is that she IS a true miracle of His work. The doctor said she had never seen a child born as early as Lily and score as high as she scored. On all areas except for one she scored in the 95th or 98th percentile and was scoring at a 25 month old age instead of a 19 month old which is her corrected age right now. I say this not to brag about my smart child but to share His great work in her life! God is so good!

What a day...thanks for your prayers. We will definitely keep you posted after the endoscopy. Have a great Labor Day!

"I will give thanks to the Lord with all my heart; I will tell of all your wonders.

I will be glad and exult in You; I will sing praise to Your name, O Most High." Psalm 9:1-2

Wednesday, September 1, 2010

Heading to Duke...

Tomorrow we go to Duke for the first time to see a pediatric gastroenterologist to hopefully start getting some answers. I have been waiting for this appointment for forever it feels like. I am sooo ready to have some sort of answers as to why Lily is continuing to vomit so frequently. After another vomiting episode last night that woke her from sleeping, Greg and I sat down and just felt so sorry for her. After so many of her vomiting episodes we are just angry and frustrated and just so over it all that I think we forget how awful this must be for her and her little body. I mean last night she had been asleep for almost two hours and woke up wining and moaning and within a couple of minutes vomited up everything still in her tummy and right away she was feeling much better and went back to sleep. How awful she must have felt to be woken up by that...
So in the midst of me anxiously awaiting this appointment, God has been teaching or at least trying to teach me that I am putting too much expectations on people to meet my needs instead of simply relying on Him. He alone knows my every need better than I do and yet I am putting so much faith in this doctor that I haven't even met and hoping and almost begging that he will give me answers when God has been with us and with Lily from her tiny beginning and is and has done amazing things with her.
Our past two sermons have really hit home with me and I felt like God was staring me in the face trying to get my attention each Sunday. Two weeks ago is was from Mark 8:1-21 and it was about ten lies that Satan wants us to believe. Several of them I realized I have been believing. One was that Jesus doesn't care. In my most frustrating moments and darkest places I almost start to believe that. I think where is God, why isn't He answering my prayers and healing Lily of this one last issue. Which brings me to the next lie that Satan wants us to believe is that Jesus is just one miracle after another. God didn't want us to be in love with the gifts He is giving us but be in love with the Giver. I think we saw Him heal Lily in the Nicu time and time again and I just felt like he should do it again when I want it. But I am realizing and learning through our sermons that He doesn't instantly heal because He wants us to dwell in Him and not wander. Instead of me putting so much hope in a doctor or in different therapies etc, I need to go back to the One who is hope and who so graciously and lovingly never leaves me even when I try to leave Him and whose Word is full of all wisdom and direction that I will ever need. To hear the full sermons click here. The sermons I am referring to are from 8/22 and 8/29.
So what I am trying to say is that I know God is with Lily even in her sickest moments and even in my most frustrating moments. I know that the same God that has healed and grown my tiny 1lb. 6oz. baby girl will continue to do so. I know that even though He has healed her/us in the past our lives aren't free from suffering and aren't' going to be perfect. He heals us in a way that we have to stay with Him and if we abide in Him and keep coming back for "His touch" Jesus will finish what He started.
Please pray for tomorrow that the doctors will have compassion for Lily's quality of life and will have full understanding to the depth of her problems. Pray also that even if we don't get any answers or hope for answers that I will continue to trust The Healer and know that He is in control and will heal her in His timing.