Today was pretty good for Ella.

The nurse practitioner came by earlier in the day to check on us. At that point, everything seemed well. Her respiratory status is good, her heart rate has decreased. She was fussy a few times, but I think it was due to teething. I gave her Tylenol throughout the day and that seemed to help.

The other day, Josh bought Ella a Bumbo chair. It is great for her to sit in because it forces her to work her neck muscles. She tried it for the first time the other day, but today I was able to snap some photos since a nurse was at the bedside too. Since it makes her work a lot by holding up her head, she can only tolerate it for 5-10 minutes. But during that time, she is enjoying the view of the television from her hospital bed.

Grandpa came and spent lots of time in the hospital today with me and the Bun. Ella was having a great time and flashing lots of her smiles to him.

Dr. Kays came by to see her about 2pm. He said that the abdominal xray did not show anything of concern. The neurology ultrasound report indicates that there are no signs of hydrocephalus at this time. Her labs overall are great, although her BUN is 17. This is a huge improvement from last week when she was admitted with a BUN of 12. Initially, he wanted her BUN to be 20 or greater before we left the hospital. As of today, he noted that 20 would make him more comfortable, but that since she is showing such great signs clinically, he is willing to let us go home sooner with a BUN of 17, possibly by Friday.

He was ready to change out her g-tube and realizing that she had just eaten, he opted to replace the g-tube tomorrow. That is not something that I am looking forward to for Ella’s sake.

The one component that we need to still monitor is her feeds. I explained that the feedings had been going well and that I thought that we may have found the right one.

Of course, the next feed at 3pm did not go well. We fed her a bolus and she started to retch. Along with that, she began to cry and get very fussy, indicating that she was in some sort of pain. She ended up pushing all the food back up into the syringe. This was the first time that I had seen any negative experiences while we tried this formula.

If you remember, the Alimentum is standard at 20 calories, which she ended up having for 4 bolus feeds and 1 continuous feed. From there, I reminded Dr.Kays that it was supposed to be mixed to a higher calorie formula since she is fluid restricted. So, starting last night at 6pm, we have used the 28 calorie mix of this formula. She had 4 bolus feeds and 1 continuous feed before we started having an issue.

It seemed like maybe the volume or rate was too much at a bolus feed. Therefore at the 6pm feed, we tried using the food pump and had it feed her continuously over 30 minutes. She seemed to tolerate the slower rate okay until I went to vent her. About 5 minutes later, she started behaving the same way and ended up pushing all the food back into the syringe.

In both cases, she would have an episode. This was the first time she behaved this way where it required that I increase her oxygen, just to get her to calm down. Fortunately, she rebounded well.

We consulted with the nurse and attendee and decided that we would use the feeding pump at the 9pm feed, but try it over a 1 hour period. When we did this feed, Ella was sleeping. She did not wake up or give a negative response to this approach.

We know Ella likes to go slow and that she does not respond well to change – she likes to take her time. Maybe we are expecting too much from her too quickly with this food change.

I like this formula, so I am hopeful that stretching out the feedings to 1 hour will be the trick. Tomorrow throughout the day
is when I will likely be able to see if that is going to work.

Either way, I want to make sure that we figure out this food issue. I do not enjoy living at the hospital, but want to make sure that we can take Ella home and not have to return for the same issue. Dr. Kays did mention that once we are discharged, we will have weekly appointments for the first several weeks to make sure that we stay on top of her fluid issue.

Aunt Shannon is planning to come and meet Ella for the first time tomorrow. We are looking forward to seeing her.

Please continue to pray for all three of us, but especially with Ella and her feeds. We need this to resolve before we go home.