Our feeding sessions with Julie really took off…
Julie has made tremendous progress this week. The doctors tried to remove the cannula for an hour, but Julie’s oxygen levels dropped just a little too much, but at least they gave her a try. Despite that failure, Julie is down to .2 liters/minute of oxygen (from .3). She weighs 9 lbs 7 oz and is 53 cm long. Her lung X-rays were good today. And the best news is that Julie is taking an entire feeding by bottle now!
Once we realized that Julie’s therapist wouldn’t be available during the long weekend to bottle feed her, Sarah asked the doctor if we could begin bottle feedings ourselves. The doctor agreed and the therapist trained Sarah on Friday. Sarah was very firm with the doctor that Julie wasn’t getting a fair chance with only 3 or 4 sessions a week. I’m very proud of her. The nurse tonight agreed that most parents don’t fight about the g-tube and she was proud of us for standing our ground and insisting on bottling feeding Julie.
Sarah also learned that the tracheostomy is officially “off the table.” Also, we are now allowed to pick up and hold Julie under the arms (we couldn’t hold her that way because of the 1st surgery).
So, we started the weekend with the 2 pm feeding, but Julie was absolutely exhausted so she only took 2 cc. Sarah and I were both despondent Saturday afternoon thinking that probably the doctors were right and Julie really was still quite sick and weak. However, the day nurse said that we should try again at the 8 pm feeding when Julie would be more awake, so we still had some hope.
The evening session was much better. At first, Julie didn’t want the bottle. When she finally opened her mouth, she wouldn’t close it. The nipple was just sitting there and she was very stubborn. So, I stroked her head, looked her straight in the eye and gently told her that she needed to do this. She chomped down on that nipple and went to town. We continued to give her encouragements and compliments until she downed 53 cc in about 15 minutes. She was tired but not exhausted and we realized that the “light went on” inside her mind. She did the normal RT and bath during the rest of the night, so we stayed for about 4 hours total.
Sunday night, Julie did nearly her entire feeding 75 of 78 cc by bottle. She was tired and started coughing at the end (which is why we stopped short). But after a short 30 minute rest/nap, Julie was awake and celebrating pushing herself up with her arms and bouncing her head. She was a happy girl!
Today, she did 35 cc for the therapist and the entire 78 cc for Sarah tonight. She wasn’t tired, red-faced or coughing.
We had several people ask us if we were going to take the weekend off. It was tempting, but something kept telling us that we needed to stay home and focus on Julie. I set aside most of my chores and made sure we both had enough energy for the weekend. The nursery is almost ready. I have a little wood- work to do on the crib (of course we also have a bassinet) and Sarah wants me to reorganize shelves in the closet. My reading is starting to back-up for school, but I have time to get caught up. Sarah postponed her piano practice (BTW she has received several compliments on her CD from the nurses), but hopes to get going again this week.
Four more pictures this week. Julie’s first bottle from Sarah, a session with the respiratory
therapist, her pants with the monkey on the butt, and Julie grooving to the music with her
sunglasses and head-ban!
Pray that Julie will continue to grow stronger in her feedings. If she can get to four bottle
feedings a day, she could go home with a nasal feeding tube. She loses the tube at 8 bottle feedings a day.
Andy and Sarah Horn
Although we didn’t take Memorial Day weekend off, we did occasionally take some time away from the NICU. I declared a holiday after Julie’s second surgery and we stayed home and shutoff all interruptions. This helped us reset our minds and gave us the strength to get back into the NICU routine.
We made great strides towards feeding Julie over the weekend. We got to a full feeding, but not to the required number of feedings per day. Julie struggled at times. Her performance remained inconsistent. But we felt confident that Julie was nearly home.