We are Home!

Sat. dinner with Grace at Steak and Shake

Sat. in the Cardiac Intensive Care Unit

Sucking on the Paci

Still wired and tubes still in, red bacelet says she reacts to cloth tape, the nurses had pink all around her, and she was beginning to flirt with her eyes.

Thurs.
After a long day of classes and learning things we never new about cardiac patients, chest wounds, dispensing medication and many many other things. We are home! We had a rough evening of crying, but we took all our meds and ate, and SLEPT! We love you all so much and thank you for the many, many prayers. We are truely blessed to be at home with our two beautiful daughters and a very helpful (and I Suspect tired) Grandma. We have about a week before we will head back to Egleston(hospital) for a chest x-ray, echo and surgery checkup. Then another week and we will go back to regular cardiologist visits and then the pediatrician. Boy are we glad for insurance, we are getting our money's worth this year and it is still February. Thank you for all the wonderful uplifting replies, cards and phone calls, I am not sure how we could have made it through the journey this far without the support of our family and friends. Take care!

Tuesday

Today Lily has eaten from a bottle both clear liquids and her formula. She is resting comfortably and will go home either tomorrow or thursday. Mommy and Daddy have to take a how to care for your heart patient child class - how to pick her up, bathe her, change diapers, feed and medicate and Infant CPR tomorrow. We also have to get the carseat back from Grandma Terry the washer woman. Lily is smiling more today and on less pain meds - just Tylenol. We are so greatful to all our wonderful friends and family members for the prayers for Lily, and our family. He is amazing and has seen us through this scary ordeal. The next challenge is for mommy to relax enough at home to sleep through the night with no round the clock care or machines beeping. Lily-bug will have to come back here in a week for chest x-rays and a checkup with the surgeon. After that who knows? I hope to write you tomorrow from the comfort of my own home and give Daddy an extra special birthday present of all of us at home.

Yahoo!

The cath is done and all looks good from the surgery. I will post more later.

Mon. update

Mon.
Today, we have good news and bad news. Good news - we are out of CICU and in a stepdown unit, or her own room, her chest tubes are out, and she is off of IV. Bad news - she will have a catherization to look at her left Pulmonary arteries. At her discharge Echo they could not see her left pulmonary artery. This is one of the areas that was patched last Monday during surgery. The hope is that it was just difficult to see on the echo. The other options are a stint or ballooning and surgery. This has been a roller coaster and we are all getting a little motion sick at this point. Please continue to pray, specifically for the catherization procedure and that no further surgery is necessary.

Sunday Update

Lily is starting to suck on a pacifier! This is huge, it means she may start eating on her own and can get the tube out of her nose. They hope to move her to a room, out of the CICU tomorrow. All of her meds are now oral- through her feeding tube. She is doing well and yells at the nurses when they move her around too much. Hopefully she will get her chest tubes out before moving into the room which will decrease her discomfort. It also means mommy can sleep in the room with her. Daddy could, but it will be mommy. Grace is hoping to get one of her parents back soon. She seems a little anxious about school tomorrow. She and Grandma are getting along great though. Grace is such a big girl, and is really handling everything very well. She even handled pictures of her sister with tubes in her nose and bandages on her chest pretty well. Hopefully we will have great news tomorrow. Oh and thank you to Papa for the new laptop, so that I can update everyone easier when he is out of town.

Friday

Friday!

Lily is off of the ventilator and breathing on her own. Her eyes are openning and she is starting to cough. She has reduced her medications and will start to take oral meds and food tomorrow. She is doing so great. We thank you all so much for your continued prayers and can feel the love spreading through our hearts. There are so many babies here and families with very little support. We feel so lucky to have all of you.
We will stay again tonight at the Ritz, assuming we get a room. And tomorrow Gracie comes to visit us at the hotel. I will try to keep you all updated as much as possible.

Sarah and Tom

wed. update

Wed.
They closed Lily's chest this morning after a night full of irregular rhythms. Her swelling has significantly reduced and they will begin to start weaning off the medications very slowly. The hospital is now under a tornado watch(fun). Of course I am here with two major weather worry warts(Tom and Dad, not fun). She is doing well. Grace is doing ok too, she came for a visit and left with big tears not wanting to leave with mommy and daddy staying. She also wanted to see Lily but, no children other than patients allowed on the floor. When Lily looks not so scary then we will take a picture to send home. Now there are way too many tubes and other scary looking equipment. We also have a journal to keep tabs on Miss Lily so we can hold it over her head when she is much older. Lily is also beating on her own rhythm today with a pacer backup. Keep up all those warm prayers, we can feel them and they are definitely showing in Lily's progress.

Update

Lily had a rough start to the morning with her heart rate elevating and her BP dropping. She is also having some atrial fibulation. She is on several medications to regulate these things and they are using a pacer(like a pace maker) to train her heart where to start beating and keeping her at a rhythm that she can tolerate and will help her. She is fighting through the pain medications and trying to wake up, she seems to have a high tolerance and we have to be quiet when we visit her as to not excite her too much. We thank you all for the continued prayers, they will look at closing her chest either tomorrow or Thursday. Right now we want her to stabilize and quit fighting all the medicines. The cadiologist on the floor was very optomistic this afternoon and said that everything she is doing is not unexpected after everything she went through yesterday. We will try to keep you all updated, as well as facebook.

Sarah and Tom

Surgery

We are in the CICU. Lily underwent surgery from about 9 this morning until 4. It took about five patches to repair all the tightened areas in the arteries surrounding her heart. She is currently on the ventilator and will not be allowed to wake up until they are able to close her chest. They will keep her open wth a patch covering for the next 24-48 hours. We ask you all for prayers and good thoughts. We thought that she was finished around 1:00 when they called, however they were notifying us that theyhad to go back in due to a sudden drop in blood pressure. She is very strong and will pull through this. Tom and I need prayers and good thoughts too. We love you all and cannot wait to put good news on the blog.