Hospital Memories

When my other kids were babies I made a list of things I wanted to remember about them in their first couple months of life. Since Ellie has spent 1/3 of her life (33 days in 3 months) in the hospital, I guess I am doing the same thing by making a list of hospital memories.

• Every single doctor, nurse, and respiratory therapist that worked with her would comment on her head full of auburn hair and insanely long eyelashes.
• When she was intubated she would suck on her breathing tube like a binky and you could hear the smacking all the way out in the hall.
• She continues to love her big green binky.
• Fell in love with the animal mobile that hung above her crib. She would cry whenever the music stopped so we just kept pushing the button over and over.
• She has quite the little temper and holds her breath when she gets really mad.
• I lost track of how many IVs she had somewhere around 10. She was a very hard stick and always required a couple attempts before they got one in. Not fun.
• The Anesthesiologists all disliked her...she never did well under anesthesia and kept them nervous and on their toes.
• Her busy little hands loved to grab onto any tube or wire, which there was never any shortage of.
• She found her fingers and thumb and has been sucking on them ever since.
• Continues to have her days and nights mixed up. She thinks 2 am is a perfect bedtime. Why not, when she can just sleep until noon the next day? 
• She does not like a messy diaper and will let you know about it in a hurry.
• Has the happiest smile and the saddest little frown you have ever seen.
• She can't vocalize at all with her trach (even her cry is silent), but occasionally she makes a quacking noise like a duck when she is able to force a little air around her trach. Scott calls her his little ducky.
• She does not like having her trach care done, but I can't blame her for that.
• Everyone who cared for Ellie commented on what a little fighter she is and how well she has done with everything she has been through.
• Ellie loves the pink swabs we do oral care with. She acts like it's a lollipop in her mouth.
• Due to a big leak around her trach the ventilator literally alarmed non-stop during the time she was hooked up to it. Scott would sit by her bed and sing along with the ventilator alarms.

Ellie's last surgery to do the Nissen and place a g-tube went well. Once again the anesthesiologist had a hard time ventilating her and it took an hour and a half of combined efforts by him, the ENT, and general surgeon to get her airway stabilized in a way that would allow adequate ventilation. Once they got that under control they were able to proceed with the rest of the surgery. When the surgeon talked to us after he said Ellie is the littlest package that is full of surprises. While doing the Nissen they found a hole in her diaphragm that was allowing her stomach to travel up into her chest cavity. The doctor called it a paraesophageal hernia and said this type of hernia is extremely rare in babies.

This was yet another thing that was stacked against Ellie's eating and breathing. They repaired the hernia and did the Nissen. Her stomach was so small it took almost the entire thing to wrap it around her esophagos. There was just enough left to put the g-tube in, but she will have to be on continuous tube feeds for a while until her stomach can stretch out and tolerate bolus feeds better. The best part about this surgery was Ellie came back from surgery with nothing on her face. Other than her newborn pictures she has never had a face free of tubes and tape.

Ellie was able to come home without requiring any oxygen during the day. She wears an "artificial nose" on the end of her trach that helps filter and humidify the air she breathes. We have a trach mask that we have to hook her up to at night and when she's napping that provides humidified air and we can run a little bit of oxygen through it as well if she needs it.  While on her trach nose Ellie is much more portable than she was on oxygen. Her continuous tube feeds are the only thing she is hooked up to and they go in a little backpack I can put on and move about the house freely with her. Leaving the house is a different story. Ellie is not a light traveler. There are several things we must always have with us when out and about with Ellie. Those things include her "trach bag" that has all the emergency supplies we could need with her trach, an emergency g-tube kit that thankfully fits in her trach bag, her feeding pump backpack, portable suction, and portable oxygen (even though she's not on it regularly we have to always have it with us in case of an emergency). With all of that it is sometimes easy to forget that she is still a regular baby that requires a typical diaper bag with diapers, wipes, a change of clothes, binkies, blankets, and extra milk.

Right now the only place we have ventured out with her is to my mom's house and the doctor. I don't think fun outtings are going to fit into our new life quite like they did in our old one.

We finally made it in to our regular pediatrician for her hospital follow up and 2 month check (everytime we scheduled one we missed it because she was back in the hospital).  At almost 3 months old she weighes a whopping 8 pounds 7 ounces and is 20.75 inches long. She is not even on the growth curve with either one of these. One of my friends came to see Ellie after we got home and said all the pictures in the hospital made her look like she was starting to get some chub, but in real life she still looks like a newborn. Her face is definitely filling out and she has some nice rolls on her inner thighs around her diaper. But other than that she is still pretty tiny.

I have slowly been working on this post since we got home from the hospital, but wouldn't you know it took us being back in the hospital for me to finish it.