It's bring Gracie home day!!!!!!!!!!!!
Thank you Lord for answering our prayers. Even for answering the silly one about having her home for Mother's Day! Thank you for truly caring about your kids! I'm so thankful.
Psalm 28:6-7
Blessed be the Lord,
Because He has heard the voice of my supplications!
The Lord is my strength and my shield;
My heart trusted in Him, and I am helped;
Therefore my heart gladly rejoices,
And with my song I will praise Him.

Headed home!

Gracie did great today. She came out of her surgery just fine, sporting a new accessory. Thank you so much for your prayers.
I was an absolute wreck today. After being strong all these weeks, I could not hold it together, the tears just kept pouring down my cheeks. But, I have to admit tonight, I feel much better. The looming surgery is now over and I'm focused on her coming home. The plan is to discharge us on Saturday, the day before Mother's Day. Can you imagine a more perfect gift? Thank you Heavenly Father! I can't believe its actually here. My baby girl in my arms where ever I go...heaven!
I have to admit I hate the tube. Don't get me wrong, I love what it is doing for her and our family. But, it is awful. It really is. Everyone told us how small and unobtrusive it would be. I mean, on her tiny 6lb body it is huge (I'll post pics later). Oh well. Life goes on and we are so blessed that she is able to be involved in everyday life with us, as she should be. Please continue to pray for her eating and weight gain. These are still our greatest concerns when it comes to her health in the short and long term. If she can eat properly than this tube can go, sooner rather than later.
Thank you Lord for your peace and perfect plan. Thank you for Isaiah 41:10 Fear not for I am with you...
Our next post will hopefully come from home! Yay!!

G-tube surgery

Well, our precious little girl is getting a G-tube tomorrow. All though we have been preparing for weeks, when we got the news today, I have to admit, I held my breath. I feel I've been holding it ever since. I know this is the best decision for her, but I can't help but mourn the loss of her perfect little unblemished tummy. :) This is minor surgery but... it's still surgery. Her doctor assured us that the risks are extremely minimal and recovery time is quick. So, we should hopefully be heading home by the beginning of next week. Now, that's the part I can't wait for. It makes me cry just thinking about it.
We find ourselves entering a new world, the world of parenting a special needs child. A world, I may have completely disregarded in the past, maybe only experiencing a brief feeling of pity for the parents of a child that was so different and time consuming. I have to admit, I've always felt a bit awkward around special needs people/kids, not sure how to act or what to say. So, all though up until this point she is precious and seemingly "normal" I understand the awkwardness of not knowing what to expect. So, we have decided to keep you abreast on all that we know about her condition.
Because her chromosome abnormality is such an anomaly there is little to no literature on it. We are able to see some similarities to Chromosome 14 trisomy. However, it is not exact and by no means as severe. Praise the Lord. So, we will be posting pictures of her tube, I'm sure, so that you can be familiar with it. The good news is, it really shouldn't effect you holding her or playing with her. It will just tuck into the tab on her diaper so that it is secure and has no chance of being pulled or tugged. I'm sure I'll be able to explain it further once I have lived with it a while and will do so then. If you have any questions when you see us, please feel free to ask.
We also don't want you to feel like this is something bad that has happened to us. This is the perfect gift of a precious little girl, that is beautiful and ours...ok God's too. :) We couldn't be more in love with her and more grateful for her. In fact our kids are the BEST thing's that have happened to us!
Would you please pray? Pray that the surgery goes well tomorrow(Thursday) at 2:30pm. Please pray that she won't need this darn thing for too long, and of course pray for God's will and timing in getting us home. I know God will guide us and give us what we need, so that we can provide for her.
Thank you and we love you to pieces.

"I'm Dancing!"

Ok, lately this blog is appearing a little depressing... ;)
It has been a wonderful outlet for me to vent my feelings. But, all though things are a roller coaster at the hospital, my home is still a haven.
My husband just may be the funnest Dad in the whole world. I come home to the beautiful sound of my sons voice calling out Momma(not Mommy anymore)!!! I run in, we hug and twirl and he starts telling me how him and daddy have been playing Voltron. Yep, Voltron! I think all of those science fiction books have come in handy for fatherhood. :) When they play swords, Gavin yells,"Back foul beast!" Something only Josh could teach him. And, I almost peed my pants today when Josh told me that we have to start working with Gavin on not growling, because he is scaring people! :) "Ummm...where do you think he gets it?" I laughed.
Oh, the funniest thing today...I was running out of the door to go to the hospital and Josh brought Gavin out to say good bye. Gavin had just gone potty, so he was ONLY in his t-shirt. He wriggled loose from Daddy and ran out onto our walkway, basked in the sun, he started spinning, arms raised high to the sky saying, "I'm dancing!!" Yes...in all his glory in the front yard. We were laughing so hard that we could hardly speak to get him to come inside. Our neighbors may have had a good laugh! We sure did.
It feels so good to laugh. It feels so good to be home.

Our baby is 6 weeks 5 days old, 6 lbs 20 1/4" long

Gracie seems to be feeling much better today. Praise the Lord. She has great color and is acting like herself;aware, alert,happy, and hungry. We discovered a new bottle/nipple that seems to be working really well so far. She aced her last three feeds, so we have our fingers crossed.Her white blood cell count is finally going down, which means that her body has successfully fought off, whatever it was fighting, most likely a virus. They stopped the anti-biotics (which were precautionary in case of infection).
May 3, 2009
4 days later...Gracie isn't gaining enough weight. So the Dr.'s increased her volume. She is consuming her full volume a couple of times a day but still needs her tube to finish most feedings. Honestly, its frustrating, a week ago she was doing so well and we were days from going home. We have been working on feeds for a month now, so we are forced to consider her options at this point.
The consensus is that babies thrive at home. So, if our goal is to get her home than we have to consider a way to feed her when she gets too tired to eat. We are praying about and considering the GI tube that I mentioned in an earlier post. The reality of a surgery, although small, is a little bit hard to handle, but the benefits seem to far out weigh the risks. The first, being that there has been so much pressure and so much riding on every feed and this would allow her to eat what she can by bottle and tube feed the rest. Secondly, we saw what happened when she got sick and let's face it, we have a 3 year old at home. If she gets sick again, we would be right back in the hospital. So, we will talk to the Dr.'s tomorrow morning and decide with their guidance, what to do. And hopefully come up with a discharge plan.
Please pray that God will give us His peace and that Gracie will gain weight so that we can get her home, where she can thrive.
We are so blessed to have the best friends and family ever! Thank you, Thank you. Just knowing that you are praying is the best gift you can give us.

Sigh.

You know, while living our life this past month has been hard, I can honestly say that I really trust God completely. I trust that He has a purpose and a plan(Jeremiah 29:11) for Josh and I and our kids and I praise Him for it, all of it, even the stuff I don't see yet, especially the stuff I don't see yet.
But trusting doesn't mean I don't still feel it. Because I'm feeling it today. Today was hard and sad, but at the same time I am so grateful that we are here and going through this in an environment where Gracie is safe.
I'm reminded of Joseph in the Old Testament when his brothers threw him in a pit and traded him into slavery. Joseph couldn't see the big picture, but God did. And because of that pit he was able to serve the Lord in an even greater capacity and God used him to eventually save the very brothers that threw him into the pit in the first place.
Joseph's God is my God. He is the same yesterday today and forever(Hebrews 13:8) and I am so grateful for that. And grateful that I can trust Him, whether or not I'm in the pit or out. Regardless of my circumstances He is still God. His gifts and mercies are so far beyond what I can imagine and when I focus on that I find joy. He is the constant, not me, not my circumstances.
Thanks for bearing with me as I blurt out what I've been processing and feeling today. I'm so glad that God shows He cares when it hurts and when its hard. I felt God's arms around me tonight when our friend Julie came to the door with 3 full meals for us this week. Amazing. To be able to sit down with my guys and have a home cooked meal, during my 1 1/2 hour break is wonderful. I also saw God's hand on Gracie today when he gave us the PERFECT nurse, Susan. She was such a wonderful advocate for us and fought for little Grace when she wasn't doing so well. And sure enough her hard work paid off.
After many tests it looks like Grace has an infection. So, she is back on her feeding tube and she has an IV on her head. She was such a trooper through all of her tests. She even looked happy when I was holding her tonight. She is amazing, never seeming to complain even though she has ridiculous hardware attached to her entire body.
Again, there are a million and one things I'm thankful for including the fact that she came down with this infection/virus here and not at home. But that will have to be tomorrow's blog. :)Praise the Lord that we made it through today and I have a beautiful pillow waiting for me. :)

•Jesus loves me•

Jesus loves me
This I know
For the Bible tells me so
Little ones to Him belong
They are weak
But He is strong
Yes Jesus loves me
Yes Jesus loves me
Yes Jesus loves me
The Bible tells me so

April 25, 2009

Psalm 118:24
This is the day the LORD has made;
let us rejoice and be glad in it.

Gracie...oh little Gracie turned 1 month old yesterday and is incredibly alert, wonderfully expressive, and just so sweet. However, when it comes to eating, this 5lb 15oz little bird has good days and bad. Its funny the things we take for granted,like coming out of the womb knowing how to eat. The more I am educated here, the more I am in awe of how we were designed. She has the desire and the know how, she just poops out a little quicker than most and is having a hard time gaining weight because of it. She has had her tube out for 2 days now and I just found out that she is going to get it put back in tonight. I think this is the right thing to do. We'll just back up a little and get her back on a good schedule. Boy, it was nice seeing her pretty little face without that thing for a while. Please pray that she will continue to eat her full volume and gain weight this week.
The doctors have been amazing and very patient, which we have appreciated. However, if she continues to eat as inconsistently as she is right now, we will have to start talking about a GI tube. This would mean surgically putting a tube in her stomach so that we could feed her if she doesn't take her full volume. Everyone would hate to see this, because we've seen her do so well on her good days and know she can do it. It is completely in God's hands and we are ultimately praying for His will, because He knows what is best for her in the long run. So, we will pray in the mean time and just wait and see what she can do.
Thank you so much for your prayers, support, and hot meals. I can't tell you how nice it is for our family to enjoy family dinner with a home cooked meal when we all get home from our very separate days. :)
Gavin is doing great. In fact he and his WONDERFUL Daddy are on their way home from a UCLA scrimmage at the Rose Bowl. They got to go down to the field and mingle with the players. Although, I heard Gavin was much more interested in running around than getting autographs. They got to have some serious male bonding time centered around what else but FOOOOBALL!
Yesterday, I took a much needed break from the hospital and took Gav's on a date. I left Gracie in wonderfully capable hands for the afternoon and we were off to The Discovery Center, just minutes from the hospital. What a cool place! Gavin had a blast running from one science project to the next, exploring, and climbing. It was so much fun to just be with him and feel like is mom again. He now has a year pass and can get one other person in free with him. I think this is going to work out great for anyone who is watching him this year! Yay! Thank you Lord. :)

Happy 1 month birthday Grace!

Two steps forward, one step back

Grace tends to take two steps forward and one step back when we introduce added feeds. Luckily she is remaining organized when she eats, its just her stamina that is lacking today. She is still eating all feeds and has done it without the tube for 48 hours now. However, she is struggling a little here and there getting her volume in and her weight has pretty much stayed the same for 2 days(5 lbs 14 1/2 oz's). This is better than we expected, but when your in it, it is hard to see past a bad feed. ;) We are hoping that all she needs is a couple more days to build stamina and then we can go home. The developmental team was reminding me today, how far she has come in just 3 weeks. It's actually pretty amazing.
I'm glad God is in control and not me, even though I like to think I am sometimes. :)That song "Peace, be still" is playing over and over in my mind.