10/31/08 Day 4

Ashlyn had another Echo today. It looked good so they started feeding her. She took 5cc to start (about 1/3 ounce) but she is allowed to eat as much as she wants. They are probably going to take out another line tomorrow. She had two full doses of pain meds today, compared to 6 half doses yesterday. She also ate about an ounce in the evening. They weaned her milrinone down, which is a medicine that helps her heart function better. Her chest drainage is still down, but they want to wait to take the tube out until after they see how the feedings go. She had a bath this evening too. I went home for Halloween, and brought John and Brooke back with me. Brooke will probably get to see her tomorrow. She is looking very good, and besides all the lines, almost normal.

10/30/08 Day 3

Ashlyn continues to do well each day. The biggest accomplishment today was the removal of the breathing tube for the ventilator! She is breathing on her own with he support of a nose cannula which supplies a little extra oxygen to her. Tomorrow, she probably will get to eat for the first time since Sunday night. She is much more alert, looking at me and making some of her normal noises. She is not able to vocalize yet because of the tube being in her throat makes it sore ans scratchy, but this should last only a few days. She had an Echo done yesterday and there are a few things they are going to monitor. It may be because of the stress her heart had. Her pulmonary has narrowed a bit and her arch is small (arch is what the aorta and pulmonary artery make), which we knew before. There is also a residual leak around the patch they put in her VSD (hole in her heart which allowed blood to flow through and mix, basically a heart murmur). None of the issues are critical, they will just monitor them. Her chest tube drainage is way down. Only 10cc all day which is about 1/3 ounce. She also only had two doses of morphine all day, and both were half doses. She is much happier to have her pacifier back, and it calms her with the help of SweetEase (sugar water). Tomorrow she may have some of the IV lines removed and once the ones going in to her artery are removed, we can hold her :) Tomorrow I will be coming home for Halloween with the girls and John will be returning with me that night for the weekend. I plan to stay here until next Wednesday. Thanks for all your thoughts and prayers, they are working!!!

10/29/08 Day 2

Ashlyn is still doing well. They are still trying to wean her off the ventilator. She is only on one medicine continuously, that helps her heart function better and beat stronger, similar to the one she came home on before. The drainage from her chest tube is minimal. She is on a diuretic to help remove excess fluid in her tissues, and reduce swelling, but she receives it occasionally. She also receives potassium and calcium to replenish what she loses from he diuretic. The respiratory therapist checked to see if she had an air leak around her air tube, and she does not. The are giving her a steroid to reduce the swelling in her throat so that when they do excavate the tube, she does not have trouble breathing. They are doing blood gases every two hours, so she may need some blood to replenish that. Thank you to everyone who donated in her honor. She definitely had more donated than she needed, but many other lives were saved as well. Thanks for all the thoughts and prayers! Each day she gets better and once the ventilator is removed, she should improve even more quickly.

10/28/08 Day 1

Ashlyn is doing well. She is slowly being weaned off her ventilator. They have stopped continous pain meds so that she moves around to help with swelling. Her stats are where they want them to be. She received some blood last night, but this is normal. The draining in her chest tube is slowing. She is still oozing fluid from the wound where her pace wires are. They say everything is normal and she looks good. Thanks for all your thoughts and prayers.

Surgery went good

Ashlyn's surgery started at 9:30 am this morning, after two hours of prep. As of 2:00, the repair was complete. It took them five hours to get her blood to clot. As of 7pm, she is stable and was transported to the CVICU. We are still waiting to see her, it takes them awhile to get her set up in the CVICU. We have been here since 5:25 am, it's been a LONG day. Thanks for all your thoughts and prayers.

Smiley girl

Here is some recent pictures of Ashlyn. She is getting so big. Surgery is getting real close, less than two days away.

One month old

A month has already passed since Ashlyn was born. It went so quickly! She has been home for two and a half weeks now. We have had some rough nights. She thinks Mommy should hold her when she sleeps or at least stay up and watch her sleep. We went to the cardiologist last week and everything is looking okay. He increased her medicine dosage and said to take her off the monitor. If her oxygen was too low, we would see it in her and the monitor gives false readings too. She has started to smile more the last few days and recognizes people. I was able to catch part of a smile in one of the pictures below. Monday (10/20) we are going back to St. Pete to meet with the surgeon who will doing her surgery. Friday (10/24) I go back up for pre-surgery testing and then Sunday (10/26) we will be going up for surgery the following morning. Please keep us in your thoughts and prayers, ans hopefully all goes well and she is home healthy and happy soon!

Day 11 (10/1/08) We are home!

Today we got to bring Ashlyn home!!! It was a late day and we had lots of things to go through before she was finally discharged. She weighs 7 lbs. 12.5 oz., is still eating well, and her stats are good. I have to bring her to her pediatrician tomorrow and back to the cardiologist in St. Pete next week. She is on a monitor so that is comforting. It is going to take some getting used to. The girls and John are happy she's home. Now I get to work on teaching Brooke how to be nice to babies! She wants to help, but in her condition we have to be careful. Thanks for all your thoughts and prayers, they worked! After 14 days I finally got to bring her home! I will not be updating this daily anymore, unless something happens or we have an appointment.