Noel's in Surgery

I just left Noel in surgery; she's getting lot's of things done right now. First she's getting a PICC Line placed, she'll be getting TPN through that Line to help her gain weight. They're changing out her feeding tube and she's also getting other scans done of her intestines to try and find out what is going on with them. We may have answers to what the next step will be if they find any abnormalities. All in all she's been feeling better since we've been here. She hasn't gained weight since June, which is really disheartening. After months and month of doing all we can she hasn't made much progress in the weight department. Some time in the next few months we may be heading to another Hospital to get some further testing done on her intestines. I'll keep everyone posted.
Looks like we'll be celebrating Noel's 4th Birthday at our "home away from home." I'm planning, with the help of some special people here, a little celebration for our Birthday Girl tomorrow. Thanks again for all the prayers :)

What "sick" means for Noel

When I say Noel is "sick," sometimes I kinda wish she really was sick. I know that doesn't sound good, but let me explain; When someone is sick it usually means there is some kind of medicine that could be given and then they will get better. For Noel this isn't the case. She has a condition called Intestinal Pseudo Obstruction it's a big name that means her stomach suddenly stops working. She will do fine for about three weeks and then all of a sudden she can't eat anything. Right now I'm concerned because she's too skinny. I can't feed her for about two days when her stomach stops and unfortunately her little body is showing it. There isn't just some medicine that she can take that will make her "all better." In fact there isn't much even the doctors can do to help her. The one thing they can do is give her TPN which is pretty much food through her veins; she was on TPN 9 months last year. I wonder now if that might be our next option, TPN, which comes with it's own set of complications. I hope this help you understand a little bit more and thank you so much for your prayers. I know the Lord is bigger than anything. I know that He is the great physician and that's why I'm turning to Him and asking all of you to pray! Thanks,
Tina

Noel... The things I'm Thankful for...

She's Standing.... She's Walking.... She's breathing...She's seeing the colors of fall.... She's eating through her stomach....She's strong willed....She's sweet and kind....She's a testimony of the healing power of Jesus Christ... She's beautiful...She's so silly...She's wise beyond her years... She's here....She's still teaching me everyday...She's an awesome sister...She's a wonderful child and I wouldn't be who I am without her! She's the one who helped change my life! She's a gift from God.

Update

We have had so many changes in the past few months. We moved into our new home in March, it's so perfect for us, we have a park just a few feet from our drive way. We have also gotten really involved in our church and we've started having a small group meet at our house. It's been fun to meet lots of new people. Noel is doing great! She has been taking some steps on her own, praise the Lord!! She is growing into such an amazing little girl; as I type right now she's sitting here saying, "mommy I love you sooooo much!" What a joy. Lilly and Landen are doing great too. They are truly blessing and the joy of my life! Lily will be in Kindergarten next year and Noel and Landen will be going to pre-school; they'll all be going to a private Christian school. And my wonderful husband Dustin is just as awesome as ever. He is truly my best friend and my helper. He has taken on so much with Noel and he has done an amazing job! We are all looking forward to lot's of fun in the sun this summer. I hope to keep you all updated with pictures.

So this is the reason I haven't updated in ages....

I got married to my best friend!! I'll tell you the story soon... I will do my best to write it very soon. I am now the step mother of two amazing kiddos, Lily and Landen. Noel is so happy to have siblings! She has been doing amazing; she is off the vent during the day and only needs it at night. Unfortunately she was very sick the day of the wedding; she made it to the ceremony but missed out on the reception. She has just blossomed though in the last few months, it's such a blessing from the Lord! I have also been in CNA school, so all in all it's been a busy, life changing three months! I love you all and I will do my best to keep you updated better!

"Super" Infection

Noel is back in the hospital, she was discharged on Tuesday afternoon and was back in the hospital on Wednesday night at 11:00. We finally have some answers; to start with she has adenovirus, which is a respiratory virus that can also cause other complications. Noel is suffering from some of those complications, her intestines have shut down and she's had a lot of discomfort, she's on day 8 of fevers and she's dehydrated. The doctors think she has adenovirus on top of somethings else, they just don't know what else yet. She has been anemic for a while now, (since March) and that is also concerning because they've had to take a large amount of blood for all the cultures. She'll probably end up getting another blood transfusion to help get her iron levels up again. All in all she's one sick little girl; I haven't seen her look this bad ever. Unfortunately since it's a virus all we can do is treat the symptoms and wait for it run it's course. Poor girl I wish I could make her feel better and I wish she didn't have to go through all of this, it's so hard seeing your little girl so sick.

Back in the Hospital

Noel's been in the PICU for a couple days, she was admitted with high fevers; 103 for two days. They have cultured everything they can and so far nothing is growing and there is nothing to explain the fevers. Noel and I are so over this in-and-out of the hospital every couple of weeks... it gets so wearing. Please pray hard for Noel to start tolerating food in her stomach; if she didn't have a central line for her TPN we wouldn't have to be in the hospital so much. That's the new goal and plan.... food through Noel's tummy. God has been showing me so much through this last hospital episode that I need to give my trust and faith back to Him, I've started listening too much to "the doctors" and I've forgotten to listen to myself; sure they know a lot but they don't know everything and especially when it comes to Noel, they're not the experts I am. So please pray for her... maybe every time you eat you'll think of Noel and remember to pray for her tummy to be healed! Thank so much for all your love and support,
Tina