Hey Everyone,
I've been wanting to write an update on Julia... but it's been so busy! I feel like a barely get a spare minute and I hardly even open up my computer these days. But alas, I have a few minutes now and I'm going to take advantage!
Tomorrow Julia turns 2 weeks old. That is hard to believe! The days have been a blur! Julia is still in the Intermediate Intensive Care Nursery at Lucile Packard Children's Hospital. I was discharged 9 days ago, so I have been pumping breast milk around the clock and commuting to and from the hospital (30 minutes each way) to spend time with Julia and deliver the milk each day. It has been hard to balance being at the hospital with spending time with a cute 4 year old who misses her mommy very much when she is not around. Fortunately, both my parents have been here and have been such an amazing help and a good distraction for Mattie.
She is doing well, overall, but her main issue is eating. She is SO SLEEPY that she hardly wakes up for feedings and therefore must be fed through a tube in her nose. We've barely seen her eyes since she's been born. Feeding requires a lot of energy and concentration and she tends to only be able to take in 5-10 mL of milk by bottle before falling asleep and becoming quite comatose. However, the last 24 hours have seemed to go better. Last night, her nurse got her to eat 46 mL of milk out of the 60 mL they give her for each feeding- a record! This morning she took in 30 mL by the bottle and I saw her eyes open for longer than I have ever seen them. An occupational therapist comes in and works with her daily on her feeding. I have not really tried breast feeding much at all because it takes so much energy out of her. Whatever she doesn't take by bottle, they give to her through a tube in her nose that goes into her stomach. She will most likely come home with the tube in her nose and Bob and I will have to learn not only to feed her by tube, but we also need to learn how to put the tube from her nose down into her stomach. (This is a bit nerve wracking since there is a risk of getting the tube into her lungs on accident... ugh... no pressure!) It is called a "ng tube." I am hoping to eventually transition to breast feeding if possible after she masters eating by bottle a bit more and can stay awake longer.
So far, her heart is stable, which the doctor said was rather lucky since only 25% of kids remain stable like she is. So it is still looking promising that she will be able to delay surgery until she is 2-3 months old or so. Her lungs continue to be strong and clear with minimal respiratory concern.
She is gaining weight and is now 6 lbs 11 oz.
I have started a blog for Julia:
http://juliaalexandrabrown.blogspot.com/
It has pictures- mostly pictures at the moment. I have not had much time to fill in much text. But if you want to see some more pictures, I will try to keep recent pictures on there.
Prayer Requests:
* Julia to "wake up" and become more alert
* Julia to be able to bottle feed larger quantities of milk
* Julia's coordination of the suck-swallow-breathe that is necessary for feeding
* Val and Bob's energy as they balance life and trying to spend time with Julia at the hospital
* Mattie's adjustment to our "new" life with Julia
* For Bob and Val to get comfortable with the NG tube
Praise:
* Julia's heart continues to be stable
* She has gained weight
* She seemed to be improving on feeding
Thanks for your prayers and for your continued support. Julia may be coming home in the next few days (maybe early next week.) We'll keep you posted!
We love you all!
Val, Bob, Mattie, and Julia Brown
No comments:
Post a Comment