Today was a full day for Ella. Surprisingly, she was up most of the day and only took 3 short 30 minute power naps. The rest of the time she was awake, bright-eyed, happy and smiling. We had a great time together.
The occupational therapist came to do a session with Ella. She showed me some developmental exercises that I can do with the Bun each day to help her. As you can see from the pictures, we tried the Baby Bjorn to see how she would like it and whether or not it would provide enough trunk support. She loved it! This will be a great thing to use at home, so I can have my arms free.
We are running out of breast milk and may be able to get another 24 hours worth before my frozen supply runs out. So today at 3pm, they decided to start mixing it 50/50 with formula (Similac, 24 calorie). They are still trying to determine which formula we will use at home.
All CDH babies under the care of Dr. Kays have a lower fluid intake. With Ella’s fluid issues, she is even more sensitive. So while she is in the hospital, they try to enhance and add more calories to the amount of limited fluid she intakes each day (e.g. she was up to 30 calorie Portagen). Unfortunately, they do not carry 30 calorie formulas over the counter and although you could try to mix it a certain way at home to make it 30 calories, the formula companies do not recommend it (gives too much of other nutrients/ingredients). So, this is something they will be trying to figure out over the coming days.
Although we do not anticipate any issues, please pray that Ella will not have any issues switching to the formula exclusively. Also, that the doctors will come up with a plan to get her enough calories so she can start to gain weight again.
Last night, she weighed in at 10 pounds, 7 ounces, which is much smaller than she should be at this age. She has been steadily losing weight and getting back to her “dry weight” (more of a true weight prior to her diuretic fluid issues in the past few weeks). But, we need her to gain weight and that will not happen without more calories.
Another change with feeding today is the method of feeding. Currently, she is on a continuous feed via a pump for 8 hours at night (this will stay the same when we are at home) and then she eats five times per day every three hours. When we feed during the day, we vent her g-tube for 10 minutes, feed via a pump over 1 hour, vent her g-tube for 30 minutes after the feed. She eats every 3 hours, so you only end up having an hour and 20 minutes where she is not “hooked up” to any feeding devices.
They want to try bolus feeding to provide us with more flexibility and lessen the time that Ella is attached to tubes. Bolus feeds are where you simply pour the entire amount into a syringe and it floats into her g-tube and belly via gravity; takes maybe 5-10 minutes. In the past when they tried the bolus feeding, Ella would retch a lot and not tolerate it well.
Today, we tried venting 10 minutes prior, a bolus feed, and venting 30 minutes afterwards for the 3pm and 6pm feed and Ella seemed fine. We really hope this works over the next couple of days, as it will provide more flexibility with her eating schedule.
Ella had her abdominal ultrasound this morning. By 6:45pm tonight, the official results came back and it does not appear to be any clotting in the area where the CVL was located – – praise God! Therefore, they decided to discontinue the low molecular heparin therapy. Yippee – – no more shots in her legs each day. Poor little girl!
The primary nurse practitioner that oversees Ella will be returning tomorrow. We are anxious to hear about her thoughts and the plan for discharge. We know it will be soon, but hopefully she can paint a clearer picture around the details of when that might be happening.
In the meantime, we are enjoying the time with Ella. It is so refreshing to see her relaxed and not laboring so hard just to breathe. I think that is why she has gained more energy and endurance over the past few days.
We continue to trust in Him for the timing of discharge for the hospital and ask for your continued prayers for our baby girl. We want to see her continue to get stronger and healthier each day. Also, please pray for rest and peace for us as we enter a new chapter of our journey.
Psalm 33:22
May your unfailing love rest upon us, O LORD,
even as we put our hope in you.
