Patience

Natalie is not getting off the breathing tube tonight, like we had hoped...she is stable though. Her little eyes opened up a minute ago and looked at me with sadness in them. I wish I could take this all away from her.

They are going to insert a PICC into her arm or leg later tonight. A PICC is an IV that is a more central line that will be used for fluids and medications. Natalie is considered a hard stick; they have trouble with IVs. She has her MRI tomorrow morning sometime as well.

I starting thinking...Natalie will be 8 weeks old on Thursday. She has spent more than half of her life so far either in the hospital or at the hospital for a doctor's visit. As a parent it is hard to watch your child go through something and not be able to do anything about it. I know Natalie's condition is a bit extreme, but I think every parent goes through times in their life when they wish they could take their child's pain way, no matter how big or small it might be...everything is important. The one thing Larry and I have learned is that you never know what someone might be going through, even if they do not show it on the outside.

I have mentioned from time to time, that I totally think God is working on me. I am a patient person or at least I thought I was until all of this. It has been so hard for me to not have a plan. I was so ready for her heart cath today so we could get a plan of action. I had to wait 3 days for the cath and now I am waiting for the actual plan. Okay God, I am getting the point (Your timing, not mine)!

Natalie is already a miracle and we will get through this rough road we are on. Our road may seem difficult, but I know everyone has a road they are on or will be on someday. The bible doesn't say if in times of trial, but when (James 1:2-3)

A friend of mine send me this devotional from Rick Warren the other day and I wanted to share it with everyone.

September 3, 2009

Having Patience in the Midst of Discouragement
by Rick Warren

“You need to persevere so that when you have done the will of God, you will receive what he has promised. For in just a very little while, ‘He who is coming will come and will not delay’” (Hebrews 10:36–37 NIV).

If you’re discouraged because of God’s delay in answering your prayers, understand the delay is not a denial. Just because the answer or the miracle hasn’t come—yet—that doesn’t mean God isn’t going to answer, or that he’s forgotten you, or that he doesn’t care about you. It simply means “not yet!”

Spiritual maturity is knowing the difference between “No” and “Not yet,” between a denial and a delay. The Bible tells us, “He who is coming will come and will not delay” (Hebrews 10:37 NIV).

The delay may be a test of your patience. Anybody can be patient once. And, anybody can be patient twice. And, just about anybody can be patient three times. So God tests you patience over and over and over.

Why? To see how patient you are?

No, he does it to show you how patient you are. So you’ll know what’s inside of you, and you’ll be able to know your level of commitment. God tests you so that you can know he is faithful, even if the answers you seek are delayed.

If you’re discouraged, turn it around by remembering God teaches you patience during delay. Ask him to transform your discouragement into patience.

You may be going through difficult times right now and feel like dropping off the planet. You’re discouraged because the situation you face seems unmanageable, unreasonable, or unfair.

It may seem unbearable and inside you’re basically saying, “God, I can’t take it anymore. I just can’t take it anymore!”

But you can.

You can stay with it longer because God is with you. He’ll enable you to press on. Remember, you are never a failure until you quit.

Don’t quit. Resist discouragement and finish the race God has set before you.

Heart Cath

Natalie had her heart cath today. She did great during the actual procedure, however after the procedure was over her stats dropped again. She is back on a breathing tube and is stable for the most part. The plan is to slowly wean her off the breathing tube tonight. She is also getting blood, because her hemoglobin's are low.

Dr. Zellers got the information he needed from the heart cath, which is great news. However, they are still not sure on the course of action we will take. Natalie is schedule for an MRI tonight or tomorrow. Dr. Forbess, the surgeon wants all the information he can have to make the best plan for Natalie.

Natalie will be having another heart surgery probably this week. The doctors have surgery conference tomorrow (this is done once a week) and she is on the list to be discussed.

We might not know anything until after this surgery conference, so tomorrow night or possibly Thursday morning. I will let everyone know when we find something out.

Thank you all for your prayers today...

Back in ICU

Natalie got moved back to ICU today. Her oxygen levels keep lowering. The doctors have moved up her heart cath to tomorrow. We will hopefully hear back tomorrow night on the heart cath and have a plan of action, but it might not be until Wednesday.

Please say a little prayer for her tomorrow, that everything goes well and the doctors get the information they need.

Oxygen Levels Down

Natalie's oxygen levels have lowered more, so they upped her oxygen. She is scheduled for a heart cath on Wednesday.

Wild Few Days

Well, we got moved into our new townhouse yesterday. Three floors, with a room on every floor, I guess that is why my legs are sore today (sad, I know). Carter is getting the hang of it as well. He went face first down a few steps yesterday and today, but we only have one black eye so we are still good. He has now learned how to watch where he is going and hold onto the railing. You have to love a two year old!

Sweet Natalie...she is back on oxygen. When she sleeps soundly (which every parent desires and wants), her oxygen drops to where they doctors and nurses are not comfortable. Since this is happening to her, they are scheduling a heart cath next week. A heart cath is a small procedure where the doctor make a small incision and insert a camera with dye to measure and see all of her heart. We should get a better understanding of what is going on with her. On that note, the doctors will not be discharging us from the hospital until they figure out what is going on.

We hope everyone has a safe and wonderful Labor Day Weekend!

Busy Night

Natalie had a busy night last night. Her oxygen levels were all over the place and dropped lower then what they would like at one point, so she was put back on oxygen. She then had blood work done, which they had to redo and had an EKG. She did get her IV removed at midnight, because the nurse came in to flush it and realized it was bad...Natalie lucked out. She likes to stick her fingers in her mouth and since the IV tube was wrapped to them, she was trying to suck on the tube.

She is doing wonderful right now and is sound asleep. They took her back off oxygen, because her levels were stabilize again. We also got to lower her calcium supplement intake, because her labs came back good for that. I am learning to give medicine like a pro.

New Room

Natalie is out of ICU! We finally got moved to the 8th floor, which is the cardiac floor. We will be here for a few days. They will basically continue monitoring her and make sure she is eating good before we can leave.

I had a great opportunity today to help demonstrate the "Virtual Crib" to some donors here at Children's. The hospital is trying to improve the virtual crib and have more of them for every room in the ICU. If you do not remember, the virtual crib is where they set a web camera in Natalie's room and I had a web camera at Baylor. I was able to see Natalie and ask questions. When I used the virtual crib you could not talk back and forth to one another, only type. The hospital is trying to get it where you can actually talk back and forth, so the mother can get a better update on what is happening. I can't say enough about how amazing the virtual crib was and comforting as a mother separated from her baby.