You never forget...

1st time in Bible class

1st Halloween

Playing with toys

waiting to go home

getting to wear clothes again

After surgery #?

A Visit from sisters....Priceless!

No one forgets where they were on day such as 9-11-01 or on the day your child was born. It seems like yesterday that you can remember exactly where you were, what you were doing at that exact time, and the emotions that ran through your body.

As I sit here right now, memories from a year ago are flooding in. I can't help to remember what I was doing. I was sitting in the hospital room with Gracie, Micha, my parents, and sisters holding my baby girl for what I knew was going to be her last night on this earth. Everyone was so supportive and coming to tell Gracie goodbye on this earth. Gracie was hooked up to so many machines that if I didn't hold her right, the ventilator she was on would start beeping. I remember bringing the girls to the hospital to let them see their sister for the last time "alive." That was one of the hardest things I have ever done. I remember bringing them home and putting them to bed, going into Gracie's room and sitting on the floor balling my eyes out and asking God why, knowing it would be the last time I was in there for a while, and then returning to the hospital until 4am just so I could give Gracie her last bath and soak up every last second with her.

Yes, I am absolutely sad and can't stop crying for the fact that I can not hold my baby's hand or stroke her hair, or that she will never grow up to walk, date, or get married and have her own kids. I would love to have a healthy Gracie right now that is able to do all of those things, but that is just me being selfish. I know in my heart that Gracie is so much better off than any of us on this earth. She IS healthy and whole again and she IS able to be a little girl.

When I reflect over her short life and think about Heaven, I get goose bumps all over. I can not imagine what she is doing right now and how better off she is. I don't worry about where she is, I worry about me not being able to get there. I don't know if you grow in Heaven or if you are frozen in time. Right now I just picture her playing with other children in the clouds and having the chance to be rocked by her great grandparents. I may be totally off on that. As a parent, you don't want to see your child suffer through anything. Gracie endured more than I have as an adult and she is one of my greatest heroes for that. I had to hand her over to doctors more times than I would like to count, not knowing how long it was going to be before I saw her again or if it was going to be the last time, but she was the happiest and most loving child I know. If you didn't know Gracie's story, you probably couldn't tell by pictures how sick she was.

I think about how Gracie has shown faith to Callie and Kadee. Kadee still says she sleeps in Gracie's room and that Gracie sleeps with her. Callie is in the process of starting her own memory video diary so that she can keep all her memories of Gracie and tell her kids someday about their aunt. The innocence of a child and their loving, caring hearts show through so much. Every night when we say prayers, the girls always talk to God and thank them for making Gracie well.

Even though I will miss my baby girl each and every day on this earth, I know she is in a much better place than we are right now. I know she is whole and healthy and I WILL see her again in Heaven.

Gracie is one of my greatest gifts on this earth and I will treasure that forever. My sweet little angel would be 27 months now, but she will always be the baby that I held a year ago in my arms.

I love you Gracie!

I have returned....Did you miss me?

Ok so a quick post, then the next million ones are going to be pictures. It has been almost 5 months now since Gracie has gone and days are still tough. We have kept quite busy from birthday parties, to end of school programs, to vacation, the lake, and just having fun. I will post a LOT of pictures soon. My camera has officially died so I'm going to forewarn you that there will be gaps!!

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!!

Another day

Gracie has made progress!!! Yesterday, they pulled the vent out of her throat and is now on a CPAP mode with a little bonnet on her head. I talked to the nurse this morning and she said she was doing awesome with it. Yesterday, the cardiologist was worried about her creatinine level in her kidneys because it was at a 1.5 and should be a .2 so that is what he was mainly going to be watching over the next couple of days. Today it was down to 1.2 so hopefully it will continue to go down. Gracie still has a long road of recovery ahead but so far is doing well!

1 week out

It has been a week since surgery #3. Gracie is doing well. She is still on the vent at 35% oxygen, a peep of 7, and 22 breaths per minute. She has gone from a peep of 10 to 7 so she is taking steps in the right direction. They are still doing a chest x-ray everyday and it continues to improve. Gracie is off all iv medicines except for heparin (blood thinner) and a few oral medicines. Each day we are losing lines and more pumps!!!

We continue to pray each day that she continues to improve and that we get off the vent soon!

A year ago today...

2 days old

10 1/2 months

11 months
11 1/2 months

A year ago today, I was at school pregnant with a precious little girl who wasn't supposed to be her until February. Boy did I know that how things were going to change!

Today is Gracie's birthday! I can not believe that she is already one year old. It doesn't seem like it was that long ago when she was in NICU or when she was only two and a half pounds. She has taught us so much and given us so much more to be thankful for. Unfortunately Gracie has spent a lot of time in the doctor's offices, hospitals, and has to be there on her birthday but is also in the best care! The nurses even made signs for her room!

Thanks Micha for making the signs!!

(My favorite!!)



Who knew such a strong little girl could touch so many people's lives and fight like she has! Gracie, we love you very much!

It's over, AGAIN

The surgeon finally came out about 4 o'clock and was finished with surgery. He was pleased with how the surgery went. He ended up putting the valve above where the original one was. He had to do it that way because her valve measured only about 13mm. Gracie did well throughout the entire surgery and when they did the echo in the operating room, there seemed to be no gradient which is a very good thing!

After we got through talking, Todd and I went to see Gracie. When we got there, her blood pressure was dropping so they were adjusting medicines, got blood gases, a chest x-ray, and another echo. They also pulled out a clot through the vent tubing which could have had an effect on the blood pressure.

The next 24-48 hours, and possibly longer will be very very critical for Gracie. With optimistic doctors, and God in control, Gracie is a tough little girl and a fighter!

Surgery #3 underway

The doctors and nurses took Gracie back into surgery this morning about 8 o'clock. She looked really good this morning and was even awake a little so that we could see her eyes and got a few smiles. Just such an incredible feeling since it has been so long! Now I just want to be able to hold her!

I will update more when I know.

On Hold and Update

Gracie is still on the ventilator and pretty sedated most of the time. Not much has changed since the last update. On the last culture from her vent tubing, there was no sign of infection so that is a plus! On a daily basis they are continuing to get chest x-rays, labs, and blood gases throughout the day.

Last week, the doctors decided to hold off on surgery for Gracie. They will repeat another echo on Monday and then decide what the best plan of care will be for her. The surgeon said that right now Gracie's valve measures a 14 or 15mm and the smallest valve they have is 16mm, so we are hoping that Gracie has grown enough to stretch that valve out a little for an easier fit. The other option is to treat her with medication and wait a couple of months for the surgery. We are leaving the decision up to her doctors because they have seen this and know what will be the best choice for Gracie and her little body.

Another surgery

I talked to the nurse a little while ago and she said that Gracie is scheduled to have mitral valve replacement surgery on Monday. I don't know a whole lot of details but will try and catch the doctors tomorrow. I will keep you updated when I know more.

12 days out from surgery

Okay, so surgery went pretty well but we have had some ups and downs since then. Gracie is still on the ventilator. Last Saturday, they tried to take her off and she just was not ready and one of her lungs collapsed so back on she went. They have kept her pretty sedated and sleepy most of the time. She also developed an infection in her lungs called Pseudomonas so they have her on three or four antibiotics

I talked to the cardiologist on Friday and he was not very hopeful that the repair was going to work with Gracie because of the leakage and fluid that was still on her lungs. He said that he thinks that there was going to be a chance greater than 90% that she will have to have a valve replacement very soon.

Last night right before bed, I called to check on Gracie and the nurse said that she was having some breathing difficulties. Being overly protective, I went up there and you could definitely tell she was struggling at each and every breath. They upped the sedation medicine hoping to calm her down, but this morning ended up changing out the ventilator, tubing, and whole thing. Gracie was doing much better today and was resting peacefully. They sent out another culture to see if the infection is still there and we hopefully will know results by Tuesday, but if all goes as planned (I don't know what that is) then Gracie will probably have her mitral valve replace within the next couple of weeks. Please keep praying that she is gaining strength each and every day and that the doctors and nurses that take care of Gracie do whatever is the best thing for her. I told one of the nurses yesterday that I guess we would just have to have her 1st birthday party in the ICU!! It is a very difficult time for all of us and right now the waiting game is just making sure we have patience!

Surgery is over!

The doctor came out a little while ago and said that he was pleased with the surgery. He said that he was able to cut out some muscle and extra tissue in the heart. He said that he also cut some slits in the valve to let the blood flow through more. Dr. Harrell said that the pressures in the heart and the gradient are much better now than they were before surgery.

The recovery is going to be difficult as well, but at least the initial surgery is over, but Gracie is still in critical condition. Keep praying and I will be updating her condition as we know more!!

2nd surgery update

I just talked to the nurse about 10 minutes ago and she said she thought that Dr. Harrell was able to repair the valve. She also said that she was still on the bypass machine and didn't know how much longer it would be. but that she would call after Gracie gets off the bypass machine. She said so far, Gracie is doing great and will let us know.

Update and Pictures

The nurse just called and said that they just now made the incision. She said they had trouble getting the central line in and that she was not even on bypass yet, but literally just made the incision. I will keep you updated.