The day finally came when they told us Lily was ready to come home. Due to the trach, Lily would have homecare nurses who would care for her, a respiratory therapist who would make regularly scheduled visits, and tons of equipment.
We set up our new home as best we could (because we moved at the beginning of June), deciding to put Lily in our living room. We wanted her to be a part of the family, not shut up in a bedroom away from all of us. Mark and I learned how to perform a sterile trach suction, how to change a trach, how to clean the trach site, how to clean her g-tube site and change a Mic-Key (all skills that would prove very useful to us)!
Finally the day came! Lily was transported home via ambulance with a nurse, the EMTs, and an RT (respiratory therapist) following my husband following the ambulance.
Another nurse was waiting when we arrived to help get everything in order. And, there was certainly a lot of disorder around our house! Bags and boxes were opened, new rolling carts with drawers and plastic storage bins were purchased, trying to find a place for everything proved impossible that night.
Here she is, settling into her new bed at home. Apparently bunnies make great nukkie holders! Who knew?!
The peace we felt having Lily home that night didn't last. Tummy troubles were always an issue for her. We always had to keep her g-tube vented (open) into a syringe, so she could let out her gas bubbles easily. For some reason on the day we took her home, we tried a different way to vent her (a Farrell Valve Bag), which didn't work at all. By evening, Lily was very uncomfortable. Her respiratory rate increased, and even after nebs, Lily wasn't calming down. Of course, at the time, we didn't realize it was her tummy issues causing the de-sats (dips in her oxygen levels). This was our first night having her all to ourselves, and the nurse was also unfamiliar with Lily. In the end, she recommended we take Lily back to the hospital. She was afraid Lily was sick or had C-diff (an intestinal bug) again.
In the end, it was just the tummy stuff, and once we started venting her GT into the syringe again, everything was just fine. A week later, Lily came home to stay!
Leah sitting up for the very first time. She also rolled over for the first time that morning.
For the first time, Lily was our baby, not the hospital's baby. For the first time, she smelled like us. For the first time, our whole family was together, and we didn't need to take turns going to the hospital.
Leah started eating solids. Lily was taking bottles, though not always well.
My Grandma came to visit for the first time to see the twins she'd been praying for so long. Lily started trials off her CPAP (continuous positive airway pressure to help stint her airway open) and on a "nose" (filter that slips on the end of the trach, working like your own nose would), which she is wearing in this picture. It made her so much more portable!
Leah and Lily getting to know each other again.
Elise and Lily
Lily had a chronically leaky GT stoma site after the Mic-Key (g-button) was placed. The Gastro docs and the surgeons both had differing ideas on how it should fit. Anyway, after some MacGyver-ing by mommy and the nurses, we got it figured out. Until then, Lily spent a lot of time in nothing but a diaper because who really wants to wash out clothing covered in stinky formula and stomach acids?! (Lily wasn't gaining adequate weight on breast milk, not even fortified breast milk, so we had to switch to very high calorie specialized formula.)
Bonding
Mark's parents with the girls
Elise, much to my chagrin, went through a naked phase about this time. It would be less of a big deal if my home didn't always have non family members in it, nurses (lovely nurses too), RT's, people bringing equipment, and therapists! One of Elise's favorite things to do was play "doctor." That little thing in her hand with the white tip is a nasal sucker. That is one awesome piece of equipment that every mom should have (along with a suction machine to attach it to)!
As time passed, we began to take care of Lily on our own sometimes. One of the first times we did family hours, the other girls were playing in the kiddie pool. Lily was not impressed. She lasted all of about 1 minute (long enough to snap the pic).
I have no idea what kind of face Lily is making in this pic, but it's hysterical!
And so it begins...falling asleep in their food.
Leah was growing and meeting milestones, and pretty much no longer a preemie, but a healthy baby.
Lily was rarely without her nukkie in those days. For so long, it had been her only source of oral comfort (since she couldn't eat), and I was happy to let her have that.
Elise loved helping with everything!
This picture gives you a small idea of just how much stuff was in Lily's bed. A spare trach and chain ties, a wire cutter (in case we needed to get the chain off fast, although I could take that thing off way faster than I could ever do it with a wire cutter), various suction tips, sterile water, suction catheter kits, and all sorts of other stuff, including stuff animals and blankies.
Leah considering rolling over.
I think she may go all the way!
Leah's strawberry hemangioma (birthmark on the side of her head above her ear) was looking so much better in this picture. It was even starting to shrink down a bit. Now, it's completely gone, except for a bald spot likely due in part to the fact that the birthmark outgrew it's blood supply, and partly due to having the laser treatments done after it ulcerated. Her other hair completely covers it though, so you'd never even know it's there now, unless you look for it.
Sister love
In September 2004 Lily became very sick for the first time since coming home. It got to the point where we had her on 3 L of oxygen at home, but she just wasn't perking up. Our nurse and I agreed that we needed to take Lily to the hospital, which we did. After a horrible ER experience and a horrible night on the floor while a resident basically watched my baby "poop out," which means she was working so hard to breathe that she just couldn't do it anymore, they transferred Lily to the PICU and placed her on a vent. She was hospitalized for a week. During that time, I learned a lot, and we've never had an experience like that one since. Now I have a much better idea of how to manage Lily when she's sick, what helps and what doesn't, and I always say "no residents" as soon as we walk into the ER. Some of them are so good, but Lily is just too complicated for them to be primarily managing her care.
Then in October, Mark's sister was getting married. Lily had been healthy for about 3 weeks, and we wanted to take Lily 4 hours away from her hospital and doctors, 4 hours away on an overnight trip, 4 hours away with one nurse accompanying us. The doctor said it was just too risky, considering that Lily had just gotten over being sick and in the hospital on full ventilator support.
It was a risk we decided God was willing to let us take. We brought an awesome nurse with us. I wish I could tell you just how packed our van was. Let's just say that from the floor to our shoulders, the van was packed! Mark had foot room, and the nurse had foot room, I had no foot room and neither did anyone else (good thing the kids' feet didn't touch the floor yet)! To top it all off (literally) our clothes weren't even IN the van! That was all of our equipment. The clothes were in a luggage rack on top of the van. For equipment, we had Lily's CPAP machine, her pressure monitor, IV pole, bags of sterile water, heater, 2 car batteries for running the equipment in the van, back ups of everything, pulse ox, and plenty of other various odds and ends necessary for taking care of Lily. Unless you were there to see the unloading/reloading of the van, I don't think you could fathom the amount of stuff we had with us.
Lily is on her nose in this picture. I also clamped her g-tube (took off the vent syringe) for the picture, and she leaked stomach contents all over her dress. Oops!
You can sort of get an idea of how we took Lily out of the house in this picture. She was sitting in her infant seat while the rest of her equipment took up the front and bottom and sides of her double stroller.
It was also on this trip that I experienced changing a stinky diaper with the baby on my lap, for the very first time. And, I will tell you, it took a bit of thinking it all out, before I attempted.
Slowly, life became "normal" again. Well, as normal as it gets when you rarely leave the house because it seems like whenever you do, someone gets sick, which, in turn gets Lily sick, which could result in another hospital stay.
Dress up: it's popular with babies too!
Their first Christmas.
Leah the Bee empties all of the suction catheter kits and bottles of sterile water from the cabinet.
Lily on her "nose" When she was healthy, we were able to increase the amount of time she was on the nose per day each week. Unfortunately, whenever she got sick, we had to start over from scratch.
Story time
The girls all enjoyed playing in Lily's bed, and more than a few times the venting syringe tipped over, making a huge mess!
This picture was taken on Lily and Leah's 1st birthday. It had been months since Lily had tried to eat anything, and I doubt she even ate one crumb of cake that day. She really wasn't even interested in playing with it, but Leah made up for that. She ravenously devoured that delicious cupcake!
Leah loved her bottles. Elise liked setting up cozy beds for people. Cute, huh?
Lily practices sitting on her OT bench.
Leah loved getting into everything!
Elise and Leah, ever the shutter bugs. They still love taking pictures, only now they prefer using a "real" camera.
These shirts and hats were gifts from one of our wonderful homecare nurses. We had several of the best homecare nurses anyone could ask for. God really blessed us during that time.
This is what happens when I try to take a picture of the three girls! CHAOS!
Lily (all three girls actually) loves playing with the doctor kit toys. Who ever would have guessed that?!
Leah
As Spring came around, we were able to get outside with the girls. Of course, taking out a baby with a trach, means also taking the portable suction machine and the pulse ox too. We never went far without a suction machine!
It was lovely, being able to enjoy bonfires again after the winter!
We even ventured out of the house to Underwater World. It had been so warm that April, it was hard to believe flu/RSV season was still upon us. Lily had just gotten over RSV earlier in March, but we couldn't help ourselves. Another one of our awesome nurses made the trip with us.
Planting and painting came in May. We painted the entire lower level, and Lily moved upstairs to her own bedroom!
One last look as the tangle of cords and tubes under her bed.
Oh yes, the first time all three girls got to take a bath together. Usually Elise and Leah bathed together, but this time, Lily just begged. I knew the risks (aspirating bath water in her trach), but I thought we'd be really careful, and if I needed to, I could pull her out really fast and suction her.
Right after snapping this picture, Lily got tipped over, and I had to pull her out really fast, and do a not-so-sterile suction! Thankfully, everything turned out fine, and that was their last bath all together until after Lily's decannulation!
Lily in her new bedroom! Elise and Leah were sharing Elise's room, and Lily had her own. We got our living room back, which was really quite nice. Because Lily was on her nose all day and trach collar all night at this point, it was not necessary to have a nurse in the room with her all night. We kept the baby monitor downstairs, and that worked out really well. We were hopeful Lily would be able to get her trach out in June when she had her next bronch.
Lily on her Passy-Muir (speaking) valve. She was doing so well on that. We were certain she'd be decannulated!
This was Lily's first trip to the park.
Leah loves Uncle Tilden's strawberries!
This face - it was her "I'm trouble" look. Leah was always up-to-something!
Unfortunately, Lily was unable to get her trach out that June. Her tracheomalacia was still very significant. The ENT told me he was sure I would want to do just about anything possible to get that trach out. At that point, he said it was possible there was some impingement on Lily's airway from her aorta, and there was a surgical procedure to "relocate" the aorta, so it wouldn't impinge the trachea. "An Aortopexy?" I questioned. Surprised, he said yes. I explained that this idea had been brought up before Lily got her trach, and the cardio-thoracic surgeons had shot it down, saying there was no way they would recommend doing another aortic surgery on Lily. Without the aortopexy the ENT felt there was no way Lily would be getting her trach out for several years. He said he'd talk to the cardiologists.
They agreed to perform the aortopexy (I think they refused initially because it hadn't been very long since Lily's coarct had been repaired, and the idea of another aortic surgery so close to the first was not something they wanted to tackle), and surgery was scheduled for August.
Visiting the Rose gardens,
Trips to the zoo,
A summer spent enjoying each other, and the freedom of being able to just "go" so much easier than the previous summer. We were always having outings in one form or another before Lily and Leah were born. It was so refreshing to be able to do some of those things again.
The Aortopexy was very successful. A bronch in September showed that Lily was ready to get her trach out, except for one thing. She was a cute girl, but she had ugly tonsils (according to her ENT). In order for Lily to be successful with decannulation, she needed to get her tonsils and adenoids out first. Praise God, the ENT had a cancellation in his schedule. Lily had her tonsils and adenoids out less than a week later. Recovery was horrible. Lots of drooling and secretions. I wondered if she'd even be able to get decannulated yet that year.
October 25, 2005, Lily was successfully decannulated! Her trach was HISTORY! (She was the last decannulation they did that year before flu/RSV season.)
Stay tuned for Part IV...
2 comments:
Hi, Its Holli wanted to say your babies are oh so cute, Well not babies anymore. I love the pictures. Did you ever get asked how far apart they are in ages without realizing in the first place that they were in fact twins? I understand so much more about your scenario, like I didn't quite grasp last year (winter 2007) because I had no idea. I am glad you said everything in easy to comprehend terms.
I love the bonding pictures they are darling!
Thanks Holli. Yes, I get asked how far apart they are all. the. time! LOL
Post a Comment