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.

Monday

The hospital called today to give us instructions for E's procedure on Monday. She didn't have the MRI as scheduled because of her reflux and her uncanny knack to wake up early from sedation. Instead, she will be going to the cath lab at 6 am on Monday. We don't know exactly what the cath lab is or what they will do, but I think it gives the doctors the same info as the MRI would have. It's supposed to be an outpatient procedure, but the lady who called said that they will be admitting our baby after the procedure. I've tried calling multiple people to get more info, but so far we don't have any answers as to why they want to keep her in the hospital instead of sending her home. I guess the cardiologist is getting a little nervous with how long it is taking to get her in since her last appointment. Our good news is that E actually smiled during her bath. Usually, she screams and screams and screams some more. See, miracles still happen!

Update

I'm trying to type with one finger while I bounce a wiggly baby on my lap so this will be short. E is back on oxygen. She was pretty blue yesterday & today. MRI to look at lung function (I think) next week-- 2nd surgery scheduled soon after. Feeding tube is now in her stomach--I put it in for the first time. Not as bad as I imagined. She is very happy today. Her smile lights up her whole face--makes this ordeal worth it.

We Actually Have More Kids!

This little girl loves sour things and playing with her little sister. She is very thoughtful and kind to others in our family.

SD and his good friend have bdays that are just a day apart. They had a small party together. The noise level with just 5 boys was out of control!!! Notice the silly faces in both photos. Yep, that's our boy! He is so much fun!

Edd is into trying new food. Here she's sampling Dad's spicy sauce (that he puts on most of my cooking--hmm, what's he trying to tell me?). After a spirited dance around the kitchen and some water, she recovered nicely. She also had a bday. I took her and 2 friends to a movie and then out for dinner. Those 3 talked and talked and talked! I got a glimpse into what it will be like to have teenagers. I provided transportation and money, otherwise, I was of no use to them! I love her anyway!

Doctor Day

We spent most of Thursday up at Primary Children's for some quality time with the medical professionals in our life. It's pretty sad when most of the time I get to spend with my husband involves "dates" to the hospital. Anyway, E barely passed her swallow study. She protected her airway well enough, but is still working on perfecting her technique. Her cardiologist was ready to move the tube up to her stomach and transition her back to oral feeds, but then she checked the chest xray. E's lungs are all gunky again, possibly from aspirating stomach acid from all her throwing up. So, the tube stays firmly planted in her intestines (well, until she chooses to pull it out again--last Saturday's "date" was to the ER to have it replaced). The good news is that we can begin trying to get her to take a bottle with a small amount of thickened formula. Other updates--her vocal cord is still paralyzed and her oxygen levels are lower than we would like. She's going in for a sedated ecocardiogram at the beginning of April to check on her heart function. It looks like her second surgery may have to happen sooner rather than later, but we'll see. She needs good lung function for the next surgery to be successful, so we really hope her lungs begin to clear up soon. Until then, I get to practice patience some more. I guess I still haven't quite learned that lesson yet!