Wednesday, August 6, 2008

Getting settled...






We are slowly trying to get settled into some sort of normal life with two children. When we got home on Thursday, Trista and Tiana had put balloons in our front yard and decorated the upstairs of our house, it was really nice. We had to do a little bit of shopping when we got home because we didn't have all of the baby stuff that we needed! The weekend went really well, even though I was a little nervous. Sophia was eating on her own and we only had to use her NG tube once over the entire weekend. We hoped that when we took her into the cardiologist on Monday he may tell us we can take the tube out. So we took Sophia for her first cardiology appointment and she did very well. She is now 7 pounds 5 ounces and 21 inches. They gave her an EKG and are going to wait until next month to do an echo. He seemed really impressed with her progress and he told us he will be monitoring her left artery to make sure that it grows as she grows and as long as it does, then we are good. He did make the decision to take out her NG tube since she was eating so well, Jason was a little nervous since she hadn't been taking her medicine by mouth, but I was determined to get the darned thing out! Now she is looking more and more like a normal baby, except if you take her clothes off. The cardiologist wants to check her weight a little more and we may be able to wean her off of her high calorie formula and on to just breast milk. She has been nursing more and more and doing very well. She is such a champ and she amazes Jason and I every day. Gabi is so in love with her and she has been such a big help. Jason is going to go back to work next week, but I won't be going back until September 2. For those interested, I will attempt to keep this blog up through Sophia's first birthday with updates on her and then thereafter I will do a Robinson family blog!

2 comments:

Katie said...

Hi,
I found your blog through Grace Anderson's blog...it was on the side under her heart friends. My daughter is also a heart baby and patient at Seattle Children's, we live in Eastern Washington. We were there July 12-27 and I remember seeing your family in the playroom at the Ronald McDonald House!!! Anyway, I just wanted to say hello and introduce ourselves. Our daughter, Madison, has had 2 open heart surgeries in her first 4months of life and has one more to go. She has Hypoplastic Right Heart Syndrome as her CHD. You'll have to check out our blog. I'm so happy Sophia is doing so well, she's sure a doll. Congratulations on her great recovery!
Love,
Katie Allred (mom to Maddie)
http://allredbabygirl.blogspot.com

Wyndi said...

Hello! my daughter Izabell was bron with a CHD also and is looked after by seattle childrens as well. I came across your blog and wanted to say hello! you can visit her blog at
www.allthingsizzy.blogspot.com

I have a wonderful heart friend in Alaska Fairbanks who sees cardiology in Anchorage if you are looking for other heart families in Alaska i can give you her info.
I just wanted to say hello!

There is a heart support group that meet at Children's the 1st Sunday of every month. We meet at 2pm -4pm in the meeting rooms by the cafeteria. Heart-to-Heart Congenital Heart Defects Support Group.

info on this group here...
This parent-led support group is for Puget Sound families of children affected by heart issues. We welcome families dealing with congenital heart defects (CHD), heart conditions from illness, heart transplant, or who are grieving the loss of a child to a heart condition.

We are here for parents who have been told that their unborn baby may have a heart problem. This group is also a place for our heart kids and their siblings to meet others who have gone through similar times.

We meet once a month at Children's Hospital in Seattle. Childcare is offered during the meetings. If you would like to join us or you want to know more, please call Josephine Young, MD at (425) 827-4600 or e-mail heartmom1204@yahoo.com.