A week after the storm

So it has been a little over a week since Gracie has gone to Heaven and we are managing. I have had my moments, usually at night, but just keep busy and get the house cleaned, laundry done, etc. Todd went back to work yesterday and I think that is good for him, but I don't know about for me. I kind of got used to him being here!

We did get a lot accomplished this week along with our drama. We got new tires in the snow on Monday, Callie fell off the kitchen counter and scraped her back Tuesday, but Wednesday was the day full of drama. We went to eat lunch with Todd's parents and sister and then for ice cream.

Later on that day, we decided to just go take a drive for a while. We were getting things ready when we heard Kadee screaming bloody murder! Todd and I just thought that she was mad because she was stuck inside but when we saw her, she had gotten her tongue stuck in the opening of a metal water bottle! We couldn't help but laugh but also got concerned when Todd was pulling her head back and I'm trying to squeeze her tongue out and it is not budging! We finally got it out and I made her take a sippy cup. I was so worried about her tongue I kept asking her to show it to me and she finally said, "It's going to be okay mama!" Such a big girl!

Thursday we went to lunch with the Ellyson girls and then to get Easter dresses! So far, a pretty good week. There have been ups and downs but I know that it will be that way for a while or forever!

Gracie's angel wings

The most beautiful angel!!!


Gracie was welcomed with open arms and lots of visitors I can only imagine at Heaven's gates this morning about 11:45. Todd rocked her in his arms until she took her last breath. There's no better way to go than that! I told her to run and jump in Jesus' arms and then give him big hugs and kisses from us. I know they are rejoicing right now and Gracie is healed. She has a happy heart and can be a little girl!



I love you Gracie!!!

The end

We met with the doctor again today about Gracie. He wanted us to make some decisions and discuss the options for Gracie. He said that he didn't feel like the lung lobectomy had helped a lot according to the x-rays looking worse over the last couple of days. He said we could take Gracie back to the cath lab and check pressures again in the lungs, then probably do a bonch to see a better picture in the lungs, but then he suspected that Gracie would probably need to have a trech put in, as well as a g-tube. With all these things, Gracie would probably still be on the ventilator long term even if she were able to go home.

We asked about her quality of life and even though it is unknown for sure, being on a vent wouldn't allow her to be a normal little girl. With all the facts, Todd and I decided that the best thing for Gracie is to let her go. We know that we have given Gracie every chance possible and feel at peace with our decision. We know that she will have eternal life in Heaven with God and Jesus and will be better off than any of us here on earth. It has been very hard and emotional to make that decision because of course I want to hold my little baby forever, but that just means we will have to work that much harder to get to Heaven ourselves.

Our family, friends, and nurses has all had a chance to say goodbye and give Gracie kisses. We are going to start this tomorrow morning. You all have been such a blessing to us and Gracie has touched the lives of so many people. She is a fighter! We all know that or she and I would not be here the night she was born. So many people are praying and people we do not even know have touched our lives and we have lifetime friends because of Gracie.

Our family loves each and every one of you!

The longest 2 days ever!!

The excitement all started bright and early Monday morning. Todd and I dropped Callie and Kadee off at Mema's house and headed to the hospital, when I got a phone call from the nurse saying they were doing CPR on Gracie and that she had coded. When we got her, they had gotten her back, thank goodness! Dr. Robinson and Dr. Harrell both felt that they still needed to do the cath to see exactly what was going on. The nurses and team to move her had to transfer Gracie to a crib because everything and everyone wouldn't fit in the elevator. That seemed like the tension was horrible to watch!

After 3 hours in the cath lab, we talked to Dr. Robinson and was not expecting what came next. He said that the bottom lobe of the left lung was not functioning and needed to be removed or that we could do nothing and keep Gracie comfortable because she would probably not survive. Todd and I had a lot of alone time and talked to a lot of doctors to get the best decision for her. About 9 pm last night, Todd and I decided to let them do the surgery.

So, today, Gracie had 25% of the lower lobe of the left lung removed. The surgery took about 4 hours and the waiting was horrible. We didn't get any updates and that didn't please Dr. Harrell too much, but overall he was pleased with the surgery. He said it was a very difficult and tedious surgery but that Gracie tolerated pretty well. Dr. Harrell did say that the chest x-ray looked better but I have not seen it. We still don't know how effective this surgery will be and there is no percentage that he can give us, but Todd and I both know that God is in control and Gracie is and always has been a fighter. As I sit with her tonight, she is doing pretty good. Her blood pressure is elevated a little as well as her temperature.

The next couple of days are going to be the hardest part to see what is going to happen. I know you are praying and we thank you so much. It is hard to see my little girl like she is but whatever happens, we know that we will have no regrets. God is so good and amazing!

Day 3 in hospital

Gracie had a rough night. The nurses called at 12:45 am and told us to get up to the hospital. They said that Gracie's blood pressure had dropped to something like 40 or 60 over teen numbers and that her heart rate dropped into the 60s. They are really not for sure why that is because the pace maker should have kicked in when she went below 130 but it didn't. When we got there, Dr. Robinson was doing an echo and said the heart function looked good, but the x-ray didn't, so they are thinking it was all respiratory. They put in an arterial line so they are able to monitor her blood pressure constantly. She was stable last night and we left about 2:30.

This morning, Gracie had been running a fever but since it has come down. The culture from the trech is growning something so they are increasing antibiotics and will know what it is sometime later today. They also are trying to gain more access to vein because some of the medicines are not compatible with each other so they are trying to put in another central line. The plan was (before last night) to go to the cath lab Monday and do surgery sometime next week. Right now I don't know if that is still the plan but will continue to update.

Thanks for all the prayers and please keep them coming!

Here we go again....

Gracie will have a pacemaker put in Tuesday morning. Her heart rate is not fast enough on its own and sometimes is not in good rhythm, so please keep us in your prayers. Also, please keep Reese in your prayers. She is 16 months and going to the cardiologist tomorrow, so please just pray that everything goes well with the check up!

Off the vent!!

Well, yesterday Gracie finally got off the vent!!!! This is a huge step for her. She is having some withdrawals from the sedation meds but it will just take time. I think the best part of yesterday was that I got to hold her!!!! The last time I held Gracie was right before the first surgery on November 10th so it has been over a month!! I'll post some pictures later. Keep praying, we still have a long road!!