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!

Happy Girl

She's happy! This is starting to happen more often. Still no hope for the hair!

Progress!!!

E went to the cardiologist on Wednesday morning. We had to be up at Primary Childrens by 8:30 a.m. (that's a 30 min. drive without traffic). I got up at 6:30 a.m. and even without a shower, we still arrived late! This baby thing takes awhile. Once we finally loaded up the feeding pump, the oxygen tank, the car seat, and the diaper bag and were headed out the door, she had a messy diaper! The good news is that we got to come home from the hospital without the oxygen!!! Her lungs are clear and her heart function is fine (well, as fine as can be with only a 2 chamber heart). She is up to 8 lbs., 14 oz. and is starting to look less fragile. Yay!

KD is such a wonderful husband! I was feeling mom guilt about my baby care oopsies. He helped me feel better. When we were leaving for E's appointment, he hooked up the portable oxygen tank for me. When I checked it, I found that he had actually connected the portable tank to the big stationary tank on accident. The baby's tubing was just dangling from her car seat! At least I'm not alone in my lack of nursing skills. Please pray that our baby survives her parents!

Where's the Nurse?

We are slowly adapting to having E home. I can now move more freely about the house while toting the feeding pump & pole, bouncing the baby and kicking the oxygen tubing out of the way of obstacles. Of course, I can only go 50 ft. in any direction from the oxygen tank (that's how long the tubing is) but that's good enough for me! I can't make it downstairs to enforce the 1/2 hour-only video game rule, but there's no complaining from the kiddos!

I will admit that I really miss the nice nurses at the hospital. It's a miracle that our baby is still doing fairly well in spite of her mother's oopsies with the medical paraphenalia. In my sleep filled days, I was a responsible person. No more! So far, I have broken the feeding pump once, given her too much milk straight into her intestines, and starved her for 4 hours because I didn't have the pump set to alarm when her bag-o-milk was empty. Today I took her to the pediatrician for her synagis (RSV preventative) shot. It took me a good 20 minutes to pack up her stuff and get the portable oxygen tank hooked up. After about 15 minutes of baby crying post shot, I checked the tank only to find that I had never turned it on! I don't think I will pursue a career in nursing.

The good news is that E is up to 8 lbs., 9 oz. She is starting to fill out and look like a normal baby. She continues to throw up a few times each day. The GI doctor is at a loss as to why she is doing this. Her food bypasses her stomach, so we're not sure what is going on. We took her back to the hospital Wednesday for an x-ray to see if maybe her feeding tube was in the wrong place. Everything was fine there. They changed her formula today to see if that will help. We'll hope for the best!