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!