About a month or so before Lily was decannulated, Leah broke her leg. We were all playing Ring-Around-the-Rosie, and when we all fell down, Leah started crying. When she stood up to attempt taking a step, she collapsed to the floor. At first, I couldn't figure out why she was crying so hard, as it really didn't look particularly painful. With that first step, I knew, and I remember telling Mark, "Oh my goodness. Leah broke her leg." I remember saying it so matter-of-fact. In my mind, I was thinking, "Oh puh-lease! You can't be serious! People don't break their legs playing Ring-Around-the-Rosie!" Um, well, actually they can. It was a stress fracture, so nothing too serious. A pink cast, and a few weeks to heal, and all was well again. My MIL had broken her foot earlier in the summer, so she and Leah got to be casted together. The worst part was that Leah had only started walking a couple of short months before this happened, and it took her a little while before she was feeling sure-footed again.
October 25, 2005, Lily finally got her trach out. We waited at the hospital for something like seven hours for the ENT to come over (he'd gotten stuck in a really long surgery). Finally, he told the nurses that we could just pull it. I removed her chains, and took out the trach. I'd held off on Lily's tube feeding as long as I thought I could (in order to avoid her throwing up all over), but I'd just started her feeding when the ENT called. Anyway, as I expected, Lily threw up everywhere and turned a scary shade of purple, but after suctioning her stoma and a few moments to settle, she had a fantastic night. And, the trach was HISTORY!
This cake was the one I made in completion of my first cake decorating class for beginners.
Here are a couple of the first pictures we took of her without her trach. Of course, her stoma is still open. The doctors recommend waiting for it to close on its own, which usually takes a few weeks. In about 6 weeks, they recommend scheduling surgical closure if it doesn't close on it's own.
We began really working on solid foods with Lily (not that we hadn't before, but it was still very hit or miss). After a couple of weeks, we had our last homecare shift. The nurse packed up many of our supplies to be donated to other patients from the nursing agency.
I had to get used to having the girls on my own all day for the first time. It took some tweaking, but I finally got Lily's neb/med schedule and feeding schedule worked out in a way that I felt I could manage with the other two girls. After the trach came out, Lily's projectile vomiting issues ceased (praise God!).
Still, eating was slow going. Some day were just better than others. She might eat pizza, but then gag on mac -n- cheese. You could just never tell what would go down.
Their 2nd Christmas, and the first trach-free Christmas.
This was the first year Lily actually got to be with extended family for Christmas. For many of my extended family, it was the first time they'd ever even seen her!
This picture is of my mom and Leah.
Christmas with Mark's family up north.
Playing in Grandpa & Grandma's basement. It was so nice being able to take a trip and not have to worry about Lily's trach collar circuit. The thing with the trach collar was that it provided heat and humidity, but water could collect in the tubing. If that water went up into her trach while she was sleeping, she would get all of that in her lungs. Sleep was not something I got very much of during those weekends away! Even the slightest water noise would wake me up, and I'd have to empty the tubing.
Elise and Lily
Their first sledding experience!
Elise and Leah
Great Grandma
Their 2nd birthday
Making Valentines for Daddy
We scheduled and rescheduled Lily's trach stoma closure probably 10 or more times during December - March. Every time, right beforehand, she'd get sick. I remember apologizing to the ENT, telling him, I really wasn't letting Lily lick people's cups or anything.
She was hospitalized 3 times that winter. The first was a respiratory bug, but the second and third were for stomach stuff.
One day Lily started throwing up bile. After the first few times, I wrapped a clean diaper around her open g-tube, and let it drain out. This went on for most of the day. Nothing was staying down, so that evening we took Lily to the ER. I was very concerned that this was related to Lily's pre-existing gallstone. After an x-ray, the ER doctor said she thought Lily was just constipated. She gave Lily a bolus of fluids and an enema, and we went on our way. However, Lily wasn't better the next day. Even after 2 glycerine suppositories, Lily still hadn't pooped. Bile continued to leak from her g-tube into a diaper.
Back to the ER we went. The doctor came into see us (a different one) and tried to tell me Lily just had a virus. I looked at her and said, "This is not a virus, and I would really hate for you to miss something more serious because you're planning to pass it off as such." The radiologist agreed with me. He said that Lily's bowel gas pattern was unchanged from her previous film, and he suspected a partial bowel obstruction. So, Lily was admitted for IV fluids, and antibiotics. After a couple of days, it passed, and she was as good as new.
Two weeks later, same thing all over again, this time with respiratory stuff added in for fun. I could not figure out why Lily kept getting partial bowel obstructions. One of our old homecare nurses and I talked about it, and we finally figured out that Lily had been getting partially digested formula for so long that her body wasn't making all of the digestive enzymes it needed to in order to digest her food. Once I started giving her a glycerine suppository every few days (if she didn't poop on her own), we had no more issues. It took a few months to kind of clear things up, but now we don't have any of those problems.
This picture was taken at the Baby farm animals exhibit at the zoo in early spring 2006.
At the conservatory
On daddy's motorcycle!
Those are little toy curlers on their noses. I have no idea why they thought it would be fun to put them on their noses.
Checking out Auntie's camera.
Elise and Leah
Fun with sidewalk chalk
Leah
First carousel ride
Leah
Our first family vacation since before Elise was born! We went up north and stayed in a cabin on the lake in a little resort town. It was beautiful! Mark's parents came with us.
Hiking around the falls
In July, Lily was finally health and able to have her trach stoma closed. The difference it made was amazing! She started eating really well, and never looked back. Lily is still the least picky eater in our house. She loves spicy foods, eats vegetables like they're candy, and will take a bowl of soup over a piece of cake most any day.
We took them to the State Fair and let them get Fair do's. They were so stinking cute! And, no, I don't get the tongue thing!
Grandma with the girls. Finally, little ones who let me put piggies in their hair! I love it!
Indian summer at the park.
Standing unsupported!
3rd Christmas
A new pet, Tinkerbell, joined our family.
Twins turn 3!
Lily's first unsupported steps. This was taken about a month after her 3rd birthday, but it would be another 4-5 months before Lily was really walking on her own.
The girls have both come so far in five years, and both have overcome much. Lily still gets sick more easily than most kids, and she probably always will. She'll probably take Prevacid for life and always deal with some degree of asthma. But, she gets to grow up and live a relatively normal life. For that, we are blessed. That doesn't mean it's smooth sailing now, but we're so thankful that we even have them in our lives, considering how close we came to losing them.
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