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.

Out of PICU!!!

From this... ...to this in just a matter of days!!!

And we are out of PICU! Ellie decided yesterday that she was going to get better and she made quick work of it. Within a matter of hours she was off high flow oxygen, onto regular oxygen, and then down to 1/4 liter of oxygen (that's less than what she needed before her surgery)! She is acting like she feels better. We found that she really likes male nurses, especially if they have facial hair. This doesn't bode well for the teenage years, but we'll take the many smiles she bestows on them for now. Her heart function hasn't returned to "normal," but we're hopeful that it will soon.

When Ellie was first admitted to the hospital, her next door neighbor was a boy who had been waiting for 3 months for his second heart transplant. I saw his mom today before we left the PICU and she told me that he had gotten his new heart early Sunday morning. He is doing great! I am so happy for this family and for our own baby's progress. At the same time, I am so sad for those who we met during our stay who are struggling. One family said goodbye to their sweet Eliana Tuesday night. Little Amy, Bella, and Bridger are fighting to overcome their challenges. Please keep them in your prayers. Thank you so much for all the support you have given us over the past few months. We couldn't do this without your help.

PICU

We're still hanging out with our friends in the pediatric ICU (PICU). We have seen many of the nurses and doctors who cared for E on her first trip in. They have all been so kind to her and to us. E is more stable today. Yesterday was a tough one. She was having a hard time breathing. Her heart rate and respiration rates were high, and she was sweating alot. One of the doctors came and told us that E's heart function was diminished (part of her heart wasn't contracting as strongly as it should). They think this is a temporary thing, and that both heart and lung function should increase with time and healing from the surgery. So, we will hope and wait. While we wait, E is practicing useful skills such as get the sock off the hand, pull out the oxygen tube even with the sock on the hand, poop all over mommy, and wiggle out of the "nest" the nurse made to keep her in place. Last night on my drive home, I just thought about how grateful I am for the time we have with her. Yesterday, they didn't think the baby next door was going to make it (she is more stable today). The day before, we listened to a hysterical mother cry for the doctors to help her little one (she also pulled through). I'm learning that every day is a gift for these heart babies. We love our little one--heart defect and all.

Back for More!

Ellie's heart cath went well. They stuck a tube in through a blood vessel in her leg and then went up to her heart. The doctor injected dye in different places to look at blood flow and lung resistence. Everything looked good and they would've sent her home, but her oxygen levels were at 66% on room air. Next thing we knew, we were back in the children's surgical unit. The nurses informed us yesterday afternoon that her surgery had been scheduled for this morning at 7:30. So, here I am in the PICU listening to the all too familiar beeps, cries, and voices. The surgery was uneventful. We're hoping she'll stablilize soon so we can take her off the ventilator tonight. I'll update later.