I cannot believe I got through yesterday without having a nervous breakdown! :) Just kidding! But, I was beginning to wonder how I was going to make it to the Dr's office by 11:45 when Baylee didn't even get done with dance until 11:30. But, we made it with NO TIME to spare! I think it was me running out of dance and throwing her in her seat and telling her to buckle herself in that did the trick!
Blair's Dr's appt went good. Dr. Foster just said to keep adding the Enfacare to my breastmilk and thickner. Normal breastmilk has 20 calories/ounce. The Enfacare adds 22 calories/ounce. So, we are doubling her calories basically. Hopefully that will do the trick and put some weight on her scrawny little body!
Today she had Physical Therapy in the clinic with Kerri. She did great in the beginning. Totally loaded up her diaper right before we started and she had some gas that didn't make her happy. Kerri showed me some infant massage that would help relax her and around her Omphalocele to help with the gas.
After we got through with that we stopped at my old work and visited everyone. It was so good to see you guys and I miss each and every one of you! Brandy went to lunch with me where we saw her hubby!
We have just been hanging out this afternoon since it's 95 degrees outside! We will probably take Baylee to the park later when it cools off a bit.
Tomorrow Baylee has her last dance class for the summer session. Her regular dance classes (that are once/week) will start back at the very end of August. So, at least we will have a little break from that. We are going swimming tomorrow again after she gets done with dance and lunch. That will be fun and I can't wait! It's about the only outdoor activity you can do right now during the day without dying from heatstroke!
Hugs - Tiffany
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My Peepers!
Omphalocele and PPH/RVH
This page is for Baylee and Blair. Blair was born with a Giant Omphalocele on April 7th, 2008. She spent 7 weeks in the NICU at AR Children's. Amazed by the Dr's she came home at the end of May only on a little bit of O2 and no other medications. She was also diagnosed with a 3mm VSD of her heart. That has since CLOSED COMPLETELY and will not require surgery. Recently we found out that she was born with her heart on the right side of her chest. She had surgery on Aug. 20th without expanders. The Dr's were able to do a closure surgery with a bit of alloderm pulling the muscles together. We will be in St. Louis for a few weeks while she recovers.
Baylee is an energetic 4 year old. She loves swimming, her babydolls, playing outside and most of all her little Sissy! She is our little princess and we have been amazed at how well she has reacted to her little Sissy. She is WONDERFUL to her little sissy and loves her so much!
She was diagnosed on April 13th with a Right Ventricular Hypertrophy due to Primary Pulmonary Hypertension. In July we traveled to Boston to see a Hypertension Specialist. I LOVE this Dr! She is wonderful and answered all of my questions. She will have another Heart Cath on Dec. 1st to check the pressures in her heart again. She is now sleeping with a bit of oxygen just as a precautionary.
I hope that everyone enjoy's reading about our lives and if you learn something in the process that's even better!
Baylee is an energetic 4 year old. She loves swimming, her babydolls, playing outside and most of all her little Sissy! She is our little princess and we have been amazed at how well she has reacted to her little Sissy. She is WONDERFUL to her little sissy and loves her so much!
She was diagnosed on April 13th with a Right Ventricular Hypertrophy due to Primary Pulmonary Hypertension. In July we traveled to Boston to see a Hypertension Specialist. I LOVE this Dr! She is wonderful and answered all of my questions. She will have another Heart Cath on Dec. 1st to check the pressures in her heart again. She is now sleeping with a bit of oxygen just as a precautionary.
I hope that everyone enjoy's reading about our lives and if you learn something in the process that's even better!
2 comments:
I think the crazy days are worse when it's so hot outside!
Blair is soooo cute--I wanna give her a snuggle! Her O is looking awesome! It's pretty amazing how well she's healing.
Are you getting your PT and OT through early intervention or insurance. I thought EI had to come out to the house. All of Charlie's therapists come to the house and we have no nursing care at all. It is a different state, though.
Enjoy your weekend.
Hey there lady. So glad to read and see how amazing Blair is doing!! My computer has been dead for some time, but now I'm back with a new puter, and can catch up on all my bloggee friends!! Sounds like y'all have had an incredibly busy summer, but I'm so glad. :-)
Take care, hon!!
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