Cutie Patootie

I believe congratulations are in order....

Congratulations, Phoebe!! You are officially OFF IV FLUIDS!!! You've come a long way, kid.


This is not to say that we won't need them again, especially around the time of the surgery in a couple of weeks, but we're relishing the moment.


Wow. Wow-ee-dow.

Baby Party

Rosie had her first birthday party this weekend. We had such a fun time! Look at this adorable pile of babies, daddies, and....(most importantly)... TOYS!!!

Twin binkies. The only way to travel.

Back Together Again

The big news is that Phoebe's "reconnection" surgery has been scheduled. This is when the surgeon will suture the part of her intestine that works to the rectum. The technical term for this procedure is a "pull through". The surgery is scheduled for September 11. This is much sooner than we expected. As we've been writing in the blog, we expected that the Broviac would be removed at the end of the summer, and then that we would wait a few months before doing the pull-through. But, alas, the surgeon believes that Phoebe is ready for the reconnection now (he wants to leave the Broviac in for a little longer because she may need TPN again for a few days after the surgery). Phoebe has met all the objective criteria for the reconnection...and sooner than anyone could have predicted. Go Pheebs! Anyway, the three of us will check into the hospital in the morning on the 10th. Overnight, Phoebe will experience "bowel prep", much like what adults have to do before a colonoscopy. Phoebe's bowels will be cleared of poop and (we're not totally sure about this yet, but) we think she'll be given clear liquids in a bottle. Needless to say, anxiety is high again. We can't believe we're going to bring them our beautiful child so she can be operated on again. Now we just want to be on the other side of Sept 11. We're feeling better than we did during her stay in the NICU because we realize that in no time at all, her major surgeries will be OVER. After the surgery, she will need to stay in the hospital for 5 to 7 days. The major concern after the surgery is that Phoebe will experience what the surgeon described as a "raging diaper rash". If you think about it, her adorable, perfect, poor little bum has never been exposed to poop! There are a few barrier creams (much stronger than desitin or balmex) we can get to help with the rash, but we have this overwhelming feeling that we have no idea what we're in for. Regarding the rash. We pretty much know that Phoebe is going to be a real firecracker. And now for the fun part, the pictures. Phoebe started solid food...here she is enjoying some rice cereal. Yum.
Are you sure there's no more, Mom?
We took Phoebe for a ride on a friend's boat. It was a beautiful day, and we all had a great time enjoying the views, some relaxed conversation, some coronas, and a dip in the salt water. The definition of summer.
A cute one of Phoebe and her MommaGay.

Not-so-TPN

A little medical update on the Pheebs. Phoebe's TPN is, well, no longer TPN. She is getting just fluids in her IV, which also means that she gets all her calories by mouth. The docs are keeping her on IV fluids through the end of the summer, so as to virtually eliminate the risk of becoming dehydrated. She is getting more and more milk every week, and this week we will be adding powdered formula to her milk. This will increase the caloric value of her feeds. She's doing great. More pictures coming soon.

Phoebe just wanted to say, "AHHHHHHH!" to you all. That's Phoebe for, "Hi!" Really, she's been VERY vocal. Phoebe loves to experiment with her voice, and is not shy about doing it loudly. It is hysterical. Phoebe has started to laugh, especially at MamaGay's pretend sneezing, and is rolling over from back to front.

In medical news, Phoebe's situation continues to improve. She had advanced on her feeds each week and has gone down on her TPN. It looks like she may have some major diet changes this week. The docs have been suggesting that we will be starting solid foods this week, and switching her TPN to just fluids. This is all in preparation for eliminating her Broviac line. We have been told that there is a strong possibility that the Broviac will be removed at the end of the summer.

Phoebe and Dad talk shop about the latest conducting techniques.




















































Cate, Phoebe, Cousin Loudon, Uncle Chris, Cousin Evan

I must apologize for allowing such a lapse between postings. We have had quite a couple of weeks, fighting off fungal infections of both the ostomy and broviac exit sites. The docs prescribed nystatin powder for the ostomy site, and a week later, nystatin cream for the broviac site. Although the rash must have been itchy, Phoebe acted her usual happy self, giving us little indication that she was uncomfortable.

Phoebe is getting more food again this week, and less TPN. She now gets about 66% of her nutrition from food, and 33% from TPN. Yay! The GI doc said that she's trying not to get too excited, but that she's excited. Knock on wood, cuz we're all feeling pretty darn great. See?














In other news, Phoebe is doing so well that the homecare nursing company has discontinued her "block" nursing. This means that Kathy, Phoebe's nurse who stayed for six hour shifts, will not be coming to see her any more. It's a good thing because it means Phoebe is getting better, but it was sad to see her go. Phoebe really liked her, and Mommy loved having the support from such a knowledgeable nurse. Thank you Kathy, we love you and we'll miss you!














Can you guess what happens next?

Phoebe's Great-Grandmother "Nonni" held a welcome party for her last weekend. It was such a nice party, and it was great to see Phoebe interact with her family members. Here's an adorable picture of Phoebe with her Nonni.

Phoebe loves to push with her legs. She's very strong!

Now do you believe me about the bubbles?