Smiling Baby

We are getting used to having Grace around and she is getting used to us. Here she is showing off her smile. She turns it on when she sees Mom or Dad, but turns it off when she sees the camera. Took a while to get these pictures of her grinning.

Skype

Grace had her first Skype conversation last night to wish her Great Grandmother Margie a happy 88th birthday. Her Great Aunt Sheila, and Grandma Pam also got in on the action. Every grandparent should be on Skype.

I can't tell you how thrilled we are with Grace's progress now that she is home. She gives us such pleasure, even if she is tethered to a vent. She interacts and even smiles, which means she can get pretty much anything she wants from her smitten Dad. Of course all she wants right now is a hug, her pacifier, or to be fed. Easy enough. Let's see how it goes when she wants a 1965 Mustang or something. She will have to ask her Grandma for a pony -- Dad's not that foolish.

Huge Steps

Today we took our first walk as a family. We loaded up the stroller with gear and Grace and she and Mac strolled around the neighborhood. She did great. No crises, she slept the whole way, and the vent and monitors performed as advertised.




It has been great to have Grace home, and she has really responded to the change in environment. Seemingly overnight she has started to make eye contact, track motion and become more interactive. It is a huge improvement from what she could do in the hospital. Here is where she sleeps in the living room and a picture of her hanging out with her new buddy Mac. Yes, we washed the blanket after Mac plopped down on it.

What A Day!

Grace is home and we are now a family. Albeit a family with lots of medical gear in their living room, but a family nonetheless. Loading up the car with Grace and her gear was unbelievable. Thank God we don't have a Yugo. The Denali was full to the brim with gear and supplies. We had to stop and check halfway home to make sure Gracie was in there somewhere. We were greeted by our home health nurse and a respiratory therapist to help get settled in. Deb spent the afternoon putting supplies away and tonight we are on our own. I think we have everything in adequate order to get through the night.

Grace's little friend Hope had her heart surgery today and it sounds as if it was a success. We were able to visit with her parents, Andy and Jen, before we left Riley. It was great to see them and we hope we can be as much support to them as they have been to us. Keep your fingers crossed and send blessings and prayers to Grace and Hope as they start the next leg of their journeys.

Home?

I can't believe it has been this long since I updated. Sorry. Grace received 3 days of antibiotics and seems to be doing better. In fact, we are off to the hospital this morning to pick her up. This of course assumes that she hasn't done anything crazy overnight like spike a fever or something. We are itching to have her home. I will post at the end of the day to let you know what has happened.
We are also going to lend support to our friends the Parkers. Their daughter Hope will be undergoing her heart surgery today. They have been a wonderful support to us and we hope we can be as supportive of them as they have been for us.

Jinx

It seems that whenever we announce a going home date that we jinx ourselves. It has happened again. Grace has been looking a little lethargic the last few days. Nobody really believed us that she didn't look quite right. Finally they ordered some lab tests and found she has an elevated white blood cell count meaning that she has an infection somewhere. She is not having any fevers, but she has been started on antibiotics and been cultured left and right. Hopefully we will be able to figure this out and we will only be delayed a few days. We will keep you posted -- as usual. Frustrating.

Easter Dress

As promised, Grace in her Easter oufit. She was not thrilled about the hat and I hate to say it, but there were some tears. Not the first, won't be the last.
Happy Easter!

Happy Easter

Happy Easter from Grace, Tim & Deb.
Stay tuned for photos of Grace in her Easter outfit later today.

Going Home -- Again!

We have a going home date - finally. It will be next Thursday before we can pack Gracie up and bring her and all her gear home. Her home ventilater will be delivered Tuesday, and home nursing will be arranged. Deb and I have been checked off on the ventilator and I think the hospital is glad to get us out of there. We are able to switch her off her regular vent and on to the the "travel" set up. To the side is a picture of Grace in her wagon with all her gear. She does not travel light. And yes, she is in there somewhere. If you want a run down of the gear, there is a ventilator, portable suction, two oxygen tanks, pulse oximeter, apnea monitor, battery, ambu bag, and back-up supplies. Oh yeah, and Grace.

She is making big strides in feeding. She took over 50cc of bottle feeding twice today. She also breast fed (from Deb, not me) this evening. Big strides for our little girl.

Passed!

Grace had a swallow study today to see if she is aspirating any of her oral feeds. We are thrilled to report that she passed with flying colors. We are going to start increasing the amount of orals that we give her, although she is a long way from having her NG pulled. She will only take about 10-15cc of food at a time before she quits. The remaining 90 cc has to go via NG. We are still very proud of her and now that we have the go ahead to increased feeds, maybe it is okay to have a goal of getting rid of one more tube.

Gracie's New Friend

Grace made a friend today. Her first real friend, Hope, stopped by and they touched fingertips and giggled today. Well, Hope giggled, Grace mostly blew bubbles out of her nose. Hope is having heart surgery in two weeks and her parents Jen and Andy have become great friends to us. It's a different world having a "special needs" kid. You worry about so many different things than a regular kid. Hope didn't see the trach, or the omphalocele, all she saw was a little baby. A touch and a giggle makes them friends. Hope and Grace. That should get you through the day.

Trained!

We have been trained. Saturday I had to spend 8 hours alone with Gracie proving that I was competent to manage all aspects of my daughter's care. I even had to load her into her cart with her travel ventilator and take her for a walk around the hospital. Today was Deb's turn. I am assuming she handled it much better than I did. I was looking a little frazzled by day's end, but she looked as cool as a cucumber. I was sweating, covered with spit-up and smelling vaguely of sour breast milk. Deb smelled like victory. (She also loves the smell of napalm in the morning - in case that reference slipped by you).
No official going home date. Hopefully soon.

Recent pics

Here are two very recent pictures of our girl. You will see that in one she is taking a bottle. We're so proud! She only get's about 10 cc each feed, and some of it comes out her nose, but hey we are seeing some progress.

Big Day

Gracie had a fantastic day today. She took 15cc of breast milk from a bottle today. This surprised the therapists but thrilled us. She was an ace in her physical therapy sessions and was engaging the whole day. It's nice to see her make some eye contact with us and become more interactive each day. We will continue to coach her along as soon as she gets back from shopping. She needs to buy a gift for the Queen. Hmm, maybe an iPod would be a good choice.