6 months old

Sorry this post is a little late. We have been busy - 6 month checkup with shots(fun), trying to eat off the spoon with success, nap with some kind of schedule (which we are already off of), sign up for swim team for Grace, easter egg stuff, work stuff, leaving wallets in inappropriate places(mom's car) and general running around. I have also planned a trip to my happy place, Disney World! So anyway here are some pictures of the big 6 month old and some of Grace in our month since being home from surgery. Lily is doing great working on getting back on track with sitting up, tummy time and building up those chest muscles again. Mommy is working on the schedule thing, with meds, sleep and eating thrown in it gets a little complicated from time to time - I wasn't so stringent with Grace, but Lily seems to really thrive on a strict schedule. Grace is being a great big sister and getting ready for Kindergarten - registration comes up this week. She is so ready, I am working getting myself ready for the big girl to head off to school.

One Month

It has been one month since we sat at Egleston for 7 hours on our Pre-op visit. Thinking back to how scared we were, it is amazing to think it has been that long. Where did all that time go? I am going to have to print out all the blogs, and e-mails so that I can account for the time that we were in the hospital. I found myself actually longing for the sleep rooms at the hospital the other night when Lily woke me up at 4 am. See there I didn't have to get up for a crying baby. The wonderful nurses took care of Lily 24 hours a day and Grace was being watched(spoiled) by her Grandma Terry. It is amazing how far we have come. Lily gets 6 medicines a day not including Tylenol or mylecon. I am supposed to listen to her heartbeat and count for a minute at least 4 times a day. Not to mention we still have acid reflux, she vomited yesterday, and I have started back to work. Lily's scars are healing, most of the scabs are gone and the bruises are turning yellow. She wore a holter monitor for 24 hours this week to record her heart rhythm. As for "normal" baby things -

she likes to plaly with her tongue - either holding it in her fingers or raspberrying with spit up in her mouth (gross),

we still have to cradle hold her and scoop to pick her up to avoid chest pain,

she wants to see everything that is going on - especially what Grace is up to,

she likes to watch everyone eat - real food here we come!

she "talks" - which if you call us on the phone consists of grunting, growling and making as much noise as possible no cute little coos or gurgles.

Soon we will hit that 6 month mark. Hopefully she will make it into the crib to sleep, eat baby food, get all her immunizations, be Christened, have formal pictures taken, not cry for Grandma Suzanne the babysitter, and Grow, grow, grow. She is so happy and fantastically healthy and LOVES her big sister. Not sure how long the loving big sister will put up with her adoring little sister but for now they are great together. Lily usually gets the giggles while watching her sister be a goofball. And as soon as Grace is in bed Lily falls asleep. Mommy and daddy are boring.So while we wait for things to return to "normal" we will hangin there with my new BFF Prozac!

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.