First Real Photos

Ellie got her first real pictures taken today. She has been a pretty happy baby lately. We had good friends staying with us last week and she loved all the attention. Her new medication has gotten her retching down to 2-3 times per day. Yay! She has started attempts at drinking formula from a cup and having tastes of apple juice on a spoon. This gives her about a molecule or two of formula and juice. Her faces as she tries "real food" give us lots of entertainment! I will try to capture some on our camera later.

I wish I was this flexible!

Feeding Frustration

So, we're stuck. We can't get Ellie to take a larger amount of formula at once without her retching a lot. This means we're still on continuous feeds with her pump. She started a new medication on Wednesday to try to control stomach spasms, so hopefully we'll see some results soon. Once she's more comfortable in her tummy, we may be able to get her to a typical feeding pattern and then to try eating by mouth. Fun, fun!

Another Update (even though I keep saying I'm done blogging)

We spent Monday afternoon at our favorite place--Primary's. Ellie passed her swallow study finally. Her swallow is not perfect, but it is safe--no aspiration. Yay! Now we get to deal with oral feeds. Ellie clamps her lips tightly together when I try to put things near her mouth, so I'm not looking forward to this process. I'm supposed to be giving her tastes of her formula on her binky. She can't stand that. I tried a Twizzler last night and that was better. Who knows if she will ever take a bottle, but I might have some success with treats! As for our ENT visit, we found out that Ellie's left vocal cord is still paralyzed. Her right one compensates so her voice is getting louder. I had to take her out of church a couple of weeks ago because she was making so much noise (happy sounds though). At least we are moving forward!

Firsts!

We have finally been able to start doing things as a family! Ellie had her first short hike with us and loved it! We also took the whole crew to This is the Place Heritage Park to see all the baby animals. The park is not far from Primary Children's. When the kids saw the direction we were headed, our oldest asked if we were going to the hospital. She was actually excited about going to "our room" and watching cable TV (we are mean parents and don't have cable)! It is so nice to be all together, but four kids is a lot of work!

So, I can't figure out how to move the pictures where I want them, so you get what you get! Here's another first: Ellie on her tummy (and not crying)! She is 5 1/2 months old and is only now starting to be able to hold her head up. We'll take the progress though! She is also almost up to her goal amount on continuous feeds through her g-tube. Progress with feeding has been amazingly slow. Dumb patience training! She has not been sleeping well. A few days ago, I took Ellie to her pediatrician who told me she has an ear infection (no symptoms, though). I was so excited that she had a "normal" baby problem that can easily be fixed and not a heart problem! She's still up quite a few times at night. Dumb, dumb patience training!  

Here's another first: my "I hate to look nice" daughter with make up on! She participated in a celebration for the LDS temple that was just constructed in our city. The youth in our area performed a dance depicting the early settlers of Utah. It was a fabulous experience for her and very enjoyable to watch for us! Plus, she looked great in her costume and make up!

Bumbo

Look, no more oxygen tube as of last Wednesday! You can finally see Ellie's pretty face. She continues to have some issues with retching after her surgery and has decided that sleeping is not one of her hobbies. But, she is so much fun to have around! Our other exciting news is that we can begin to take her out. She's even ok to travel this summer! Ellie is about a month behind in her motor development, but she is getting stronger. The "Bumbo" we borrowed from her aunt is helping.

Big brother found better uses for the "Bumbo." He regularly wears it as head gear.

This picture was taken in the hospital after the Nissen. The dressing surrounds her button, so you can't see it very well. There's a tube we hook into the notch in the button and then we just pump her formula in.

Post Nissin

Ellie is doing well following her surgery. We only had 1 night in the PICU. Now, she is back upstairs in the same room we had just over a week ago! I feel like we never escaped! The surgery she had is called the "Nissin." The surgeon wrapped the top of her stomach around her esophagus and stitched it so that food can (eventually, we hope) go down, but nothing can come back up. We feed and burp her through a "second bellybutton" in her stomach. This means no more feeding tube through her nose--wahoo! I'll post pictures when I get a chance. She should be coming home on Saturday with no plans to return until she is 2-4 years old. Normal life, here we come!

Home for Now

We are home! Ellie's heart function has improved, but she continues to have a hard time with reflux and aspiration (getting tummy juices into her windpipe). She will be returning to the hospital on Tuesday for another surgery to fix the reflux. She should be in for 3-5 days. It is so nice to be back with our family, even if it is for a short time.