Juliet turned EIGHT weeks old yesterday! I really can't believe it. Looking back, it has actually gone by fast - especially now that I am home, back to work, and VERY busy! Jules looked SO big to me today. She is actually starting to fill out a little bit and get "some meat on those bones". :)
We are still several weeks away from her next surgery. Until then, the team will just continue to wean her oxygen requirements and increase her feedings. She was up to 5 cc (1 tsp) of milk every 3 hours, but had to go back down to 4 cc every 3 hours because she wasn't tolerating it. Because her ostomy is fairly close to her stomach, the food doesn't have that much time to digest before exiting into the bag. Increasing her feeds could be a very slow process - especially until her intestines are reconnected. She will continue to get her nutrition intravenously from TPN & lipids. The downside of this is that higher amounts and longer durations of TPN/lipids can be very toxic to the liver and can cause permanent liver damage. If Jules can tolerate more breastmilk, they can go down on her IV nutrition. This is the goal.
She had another normal head ultrasound on Thursday and is due for another eye exam this weekend. She also may start getting Occupational Therapy next week. This will supplement the Physical Therapy she has been getting since birth. :)
From right to left, these are her "accessories" you can see in the picture: nasal cannula giving her oxygen in her nose, orogastric (OG) tube from her mouth to her stomach to give her milk, IV on her right arm, PICC line (central IV) on her left arm, telemetry lead (black wire is 1 of 3) that measures her heart rate and respiratory rate, skin temperature probe (tiny white wire coming off of her right side), ostomy bag, wound dressing, diaper, ID band on left ankle, and pulse oximeter (glowing red) on left foot measuring the oxygen level in her blood. She is going to be SO happy when she is not attached to all of this stuff!
Chubby cheeks! She is looking really robust, Jess. It was so awesome to catch up with you, Chris, Addison, and Mackenzie last weekend. We are sending many good thoughts and hugs your way for baby Juliet to keep improving. We can't wait to meet her when she comes home. ~Kristien
ReplyDeleteGlad to hear things are getting better. Hoping Juliet will continue to grow and get strong for the next surgery. That would be the reversal of the ostomy bag/reconnect of the intestines?
ReplyDeleteWishing you all continued strength and love....Thinking of you and praying for good things........Aunt Laurie
Hi Jessica,
ReplyDeleteNice to check back in and see so much progress. Juliet is looking so much bigger and healthier.
Love,
Rebecca Butz Williamson