Posted (Tina) in All Posts on October-24-2008

We were too tired to write last night, but it has been a rough day or so.

Somehow, Ella has gotten a cold. Between yesterday and today, we have emptied a box of kleenex and gone through tons of wipes. Saline drops and the bulb syringe are not high on Ella’s list of things she enjoys. Her nose is stuffy and runny, all at the same time. This is making it hard for her to breathe and get her oxygen therapy. Also, she has a distinct cough that I have never heard come from her. It makes me a bit worried. Right now, there are no other symptoms and for the most part, she still seems happy a lot of the time. Watching, waiting and praying that it is nothing too serious and that we can stay away from the hospital.

The nights have been tough these days. I can remember a few times at the most recent 7 week long hospital stay where she slept the entire night. And she has slept soundly one time since she has been home during the past 2 weeks. You just never realize how much you appreciate sleep until you don’t get it, night after night.

Today, the home health nurse visited. She weighed Ella in at 7.73 kilos, down from 7.88 kilos one week ago. That is a good amount of weight loss for Ella. We know that we need to stop the trend of weight loss, but don’t want to change and increase rate or volume of food too fast. So instead of giving her 24 calorie at a rate of 27ccs, we have increased it to 29ccs per hour. Slow steps in the right direction. We’re hoping tonight is a good night for her; we’d love the rest too!

The Farrell bags came in the mail. We’re not as impressed with the solution as we had anticipated. You have to ensure that the venting area is level or lower with her belly, which means that it has to lay in the crib. Once she is there, you cannot pick her up. For us, it is definitely only a solution we want to try at night on the continuous feed.

Since Ella is steadily losing weight, we are going to be a bit more aggressive and see if we can’t work her up in volume. If we increase her over the coming days and notice we are having problems with venting specifically, we will pull out the Farrell bags. Since it is an expensive solution and I’m not crazy about it, I’m hoping that we can return the unused bags to our DME company.

Along with Ella not feeling great the past couple of days, Josh has not felt great either. He’s been exhausted and has a general achy feeling. He’s simply not feeling like himself. For awhile now, he has complained about his kidneys, thinking that there might be some type of issue. Today, he was so tired of not feeling well that he went to the ER! For those of you that might not know Josh that well, that is HUGE for him. He does not like to go see doctors. So for him to get to that point, he must have felt rotten.

Maybe he was just feeling sympathy pains for Ella. Either way, he went alone while I cared for Ella this morning. Next thing I know, I’m getting pictures from his iPhone. Yep, he got an IV, blood labs completed and they took a chest xray. They really wanted to be able to tell him if they could detect anything wrong. A few hours later, they confirmed that he has a clean bill of health – praise God! It is frustrating to feel pain and yet also feel like no one is around that can help you. I’m sure this is what Josh feels like these days.

I can’t believe that Ella is 15 months old today. I always like to take these opportunities to reflect back on what has happened. What were we doing 1 year ago today?

Wow, wow, wow. Anytime I take a moment to reflect back on pictures from the NICU, it blows my mind to think that Ella is with us and is looking good, considering her circumstances. You can tell that she is a trooper and will endure anything that is before her.

We praise and thank Him for Ella Renae and the lives she has impacted.