Our Gift

I realized tonight that there are worse things in this world than having a handicapped child. I know, it sounds so simple. I want to say, "DUH!" to myself too, but when you are faced daily with the questions surrounding a micro-preemie...questions that may not be answered for years to come, it can be a binding fear. What will her life be like? Will she have limitations and what will they be? Will they be severe? Will I ever work again? Will we get to teach our kids to love the things we have loved in this life or has the path of our lives taken a permanent turn? Will we learn to love new things? And they go on and on. The future of our entire family is SO up in the air right now and there are no answers on the near horizon.

But tonight I just don't care. What a freeing feeling for me to let that go. I have a child. She is in the NICU. She has more tubes running into her than fingers and toes. She gets stressed out when she is touched and she won't eat. She may be severely handicapped or God may choose to heal her. But guess what? Less than 1%of all babies are born this young and only 50% of them even survive. My baby made it through one more day. And I choose the praise the Lord for that. Every child - no matter what is going on with them - that God gives us to love is a gift from Him and we really miss out if we let our focus drift away from that fact. We are called to love, not fix. Thank goodness cause I can't do the later.

Emily Grace is already loved and cherished by more people than if she were born full term and in perfect health, and we, her parents, haven't even held her yet. Whatever God is doing through this child and wherever it leads, we are here to follow Him through it. I choose to trust God, even if He takes us where I think I would rather not go. I am a child with my hand in my Father's. I look around me and see danger but I remember that hand...I feel its warmth and trust it will pull me gently to safety. "For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you a hope and a future."

One for the road...

3 Weeks!!

Emily Grace has been in this world for three weeks now!! According to the drs, she is 28 weeks...they only count gestational age since she is not like a normal baby. She had a good night last night and is approaching two pounds at the speed of a slow moving turtle, but getting there none the less.

As you praise the Lord for this, let us remember what the Lord has already done (really, she wasn't supposed to make it through the first weekend), and although she is already defying the odds, we desire more. We are praying for complete recovery and no long term damage. All we want is for her to grow up with all the opportunities every other kid has...including the right to beat up on and play with her big sister. Our God is a God of miracles, I cling to the hope that what He has planned for her is greater than what my mind can think or imagine.

Since everyone wants to know how I am doing, here is the short of it. I am okay. Physically, I am still healing quite quickly. I have been off pain meds for several days because I found myself doing too much and needed to feel the pain to keep myself slowed down. Emotionally, I have good days with bad moments within them. It is getting harder again as my family leaves and there is more down time to think, but I am trusting the Lord that He will fill my time and thoughts with healthy information. I still have not gone online to read up on micro-premies or called my friends that could help me through this as I am not quite ready to talk it out (it would all be tears anyway at this point). We will start to see the counselor next week and then I will try to process more of this. For now, I don't think too much while I attempt to get my brain around what is going on (most likely a futile attempt, but I try anyway). And I journal while I pump to help the process.

Honestly, K is the main reason things are going well. She is here, she is happy, she has to be taken care of and life HAS to go on with her. There is no choice of self-pity when you have other children you are responsible to. She is a great blessing and with the stage she is at, it seems like new things happen every day. She is pushing tooth number three through as we speak.

Without the support from all of you, I am not sure where I would be right now. I know I do not respond to much but trust me, I read it ALL. Your words of encouragement keep me rolling and remind me that we are not alone in all this...that God is great and He is GOOD and bigger than all this and He has a great plan for my little girl. I think if I did not have someone reminding me of that every single day, I would go crazy...or at least wallow in self-pity. Please continue your prayers for us in this as the levels of understanding and reality hit us like bricks. Thank goodness for the break between the bricks!

FAMILY PHOTOS

We took some family pics while everyone was here...it has been 4 years since we have all been together and in that time, we have added 6 kids to the mix...


Us

My brother and his family

My sister and her family

Okay, one more of us

Cute of my brother-in-law and his daughter

My baby taking a break on Aunt Lynn.

FAQs

10 MONTHS OLD!!!!

We are SOOOOOOO grateful for this little one. She makes every day worth living and is really developing a personality. PTL that He gave us her!!

In case you can't read the expression on her face, our ten month old thinks she is already in her terrible twos...and we have the fits to prove it.

EMILY

Emily's x-ray came back negative for any serious intestinal problems and she is doing all right today except they tried to feed her again and she did not accept the food so we are waiting for a few more days to try again. Her blood gases are better - still not exactly where they want them, but acceptable for now.

FAQ: For those who want to know, we have tried to answer a few of the questions we get often...

1. What is acidosis? Basically, she has too much acid in her blood...in her case it is due to an inablility to exhale, resulting in too much carbon dioxide being absorbed into her blood, causing her pH to be too acidic.

2. What do the Drs mean when they talk about getting her blood gases under control? Basically this is one and the same problem as the acidosis. The problem above is the result of the gases in her blood being out of balance. So when they get her blood gases in balance, the acidosis will in turn balance out as well.

3. When do you get to hold her? Once she is off the ventilator she is on and they can remove her from the incubator. Probably not real soon.

4. What is wrong with her intestines? They are immature and often in infants this young and the villi can't push food through, causing an infection that if it gets large enough, they have to do surgery to remove the infected part of the intestine.

5. What is normal? She has had several blood transfusions already, her heart randomly stops for a few seconds at a time here and there, she is really hairy, her skin is peeling, she has two tubes in her mouth, two in her right arm, monitors in her umbilical cord, on her foot, and chest.

Here is a newer picture of her trying to suck her thumb. She tried for quite a while and then quit and sucked on the tubes instead.

Just her in her cuddle space.

Her hair...that will likely fall out but looks great right now. :)

11-22 Update

This is going to be a quick update because we will know more tomorrow. Emily Grace's gases seem to have gotten a little better today and the nurse said she was doing a lot better today. They will do an x-ray on her stomach tomorrow morning to see if there is anything wrong with her intestines.

Keep praying for her and us. We are still having difficulty dealing with these emotional roller coaster rides and each day poses new challenges.