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!