Posted (Tina) in All Posts on September-8-2008

Ella looked good today. I think it is because she is nice and dry.

This morning, her urine output did not look quite as good as the day before. Also, her weight was up from yesterday. And even though she was clinically acting fine, we opted to add an IV lasix dose at 7am, first thing in the morning, just to be sure.

We were able to talk the docs out of getting labs today to give Ella a break. Having the labs was not going to change the plan for the day, so they granted us a pass.

During rounds this morning, they discussed giving Ella a blood pressure medicine called Captopril. The expected benefit would be lower blood pressure resulting in an overall decreased need in her diuretics dosage. The first dose of Captopril came at 4pm today. She will get it three times per day.

For her diuretics, the plan was to dose Bumex 1.5 mg twice per day and IV lasix three times per day until the IV went bad. Well, 10am was her last dose of IV lasix; the IV went bad when they tried to use it at 6pm. I still can’t believe that the IV lasted 9 days.

When they took off the dressing, it was apparent that the IV had gone south a lot earlier in the day. The cloth diaper that was wrapped around her arm was wet and her hand/forearm was red and puffy. The IV pump had been running at a slow flow of saline all day, pushing fluid into her hand and forearm all day. Poor little Bun!

Our biggest challenge of the day was feeding. They were trying to work Ella up to 100ccs of food via bolus feeds (only takes 5-10 minutes). For today, they wanted us to try delivering 100ccs over 30 minutes. Unfortunately, right around 70ccs, she became irritable and seemed to be in pain. Also, she seems to be having a lot of gas. Not sure why, but as an example, I had to vent for 35 minutes after one of her feeds today while patting her back, just to get all the air out. You could tell that she was in pain too. So hard to feed your baby and feel like you are hurting her.

We think that Ella’s tummy needs time to stretch out again after her surgery since they re-did her nissen. So, we are going to go much slower on the feeds during the day. We found that delivering 100ccs over an hour and a half seemed to be tolerable. I’m hoping that we can improve that rate in the coming days as we near discharge from the hospital. Trust me, it is not fun to be connected to a food pump all day at home is not fun! We had to do that months ago when we were first out of the NICU. I don’t miss it!

One piece of good news: they weaned Ella down to 1.5 liters of oxygen around 10am. And so far, she has tolerated it beautifully. We’re hoping that this trend continues. I think it was good to show that she could tolerate a reduction in her oxygen when she is dry. If she requires more oxygen later in the week as they are testing out the right mix of meds for her, it will demonstrate that she might be getting “wet” again.

Tomorrow, they talked about adding a thiazide diuretic to help balance out the bumex (loop diuretic). Plus, they are going to adjust the Captopril (today we started at a low dosage and they expect to increase it to the amount she will tolerate). The hope is to use her Bumex, Captopril and an additional thiazide diuretic in just the right amounts to help prevent her fluid issue.

The coming hours and days will speak for themselves. Either Ella will be able to maintain her dry status and continue to improve clinically or she will start to get “wet” again. We’re so hoping that the Captopril is the magic answer. It would be so nice to finally know why Ella is so fluid sensitive and have something that can help us reduce her diuretic intake.

As we end our 16th day at the hospital, we praise Him for a successful surgery and the healing that is taking place in Ella’s little body, albeit slow. Sometimes it is so easy to be so immersed in the details (like a crying baby simply trying to eat via a g-tube with tummy troubles and venting for 35 minutes) that you forget how far he has brought her and how He continues to work in her life. And then someone new will walk in our room, and ask us something like, “so when did you move from Florida? Do you like Colorado?” and it opens a door to share Ella’s journey. And then it not only blesses them, but it blesses us to share.

We’re waiting for His will to be revealed in our lives, especially for some of the big decisions that lie before us. Sometimes it is so hard to be patient. But we know that God’s timing is perfect and rest in the truth of His goodness and love.

Psalm 143:10
Teach me to do your will,
for you are my God;
may your good Spirit
lead me on level ground.