Home Sweet Home

Hi everyone,
Sorry to keep you all waiting to find out how Ellie is doing. It has just been so nice being home. 2 weeks today! The girls were excited to be together as a family again. When we brought Ellie home, she was not like herself. She was pretty fussy and wanting to be held all the time. She screamed through her sponge baths, diaper changes and when we put cream on her skin. I think her sensitivity to touch increased while she was in the hospital. Reason #1 for her fussiness. I can’t blame her when she was poked and prodded all the time. Nighttime was torture too since she didn’t want to go to sleep in her bed. I spent several nights sleeping in the recliner with her.

The Friday after we came home we went to her optometrist. He said what I already figured…glasses if she can be fit for them. She has a hard time seeing close up and her left eye tends to wonder when she concentrating hard. He sent us to a frame-maker in town who was luckily able to fit her for glasses. Not an easy feat since she is so small and does not have much of a bridge to her nose. Last week we picked up her glasses and she looks adorable! (Of course, I’m her mom so I’m going to say that!) You can imagine the stares we get when we take her out in them, but boy do them seem to be helping her. She really is fascinated with her toys now.

After that appointment, we went to Ear, Nose and Throat (ENT) to get a hearing test. She didn’t pass again. They are saying it looks like fluid behind the ears. I know, she hears perfectly well…of course we don’t know how clear it is for her. She also has had no ear infections, but they say not everyone gets one and they want to make sure she doesn’t end up with one. So we will have an appointment next week with the ENT doctor.

That weekend she developed a really bad rash in her diaper area that was even bleeding at times (lots of bowel movements, but not dehydrated). Thanks to the advice from an NICU nurse friend of ours (thanks Annie!!) we were able to clear up her rash. So, reason #2 for her fussiness.

So then Tuesday of last week we went to KC for our checkup with Dr. Ostlie and he said everything looked great. He took a sample of her bowel movement to make sure she didn’t have a bacterial infections and took swabs of her j-tube and nose to help clear her of VRE and MRSA precautions (it takes 3 swabs 3 weeks in a row).

On Wednesday, we saw our pediatrician. I think it took about 40 minutes just to get caught up on everything…unfortunately, Mercy did not send him discharge papers yet so he was not updated on our last couple weeks in the hospital. While he was doing her physical, he asked if she had any teeth and I told him no. Then I was holding her upper body while he checked her abdomen and low and behold, she had one tooth that had broken through and one almost in (came in on Thursday). So, reason #3 for her fussiness. Our girl has been busy.

As for Physical Therapy (PT), they have been impressed. She has made great progress in the 2 weeks she has been home. She is sitting up well in her special chair and is even using a bit less help when we hold her. She’s using her arms well, is finally grabbing her feet again and can even tolerate some tummy time. She is also babbling a lot and saying mama and dada.

Sorry for such a long update. I will try to do them more often now. I also am going to try to get some pics onto her blog.

Natalie