The Chinese call this the year of the Tiger; I call it the year of the headless Chicken! At least that's what today felt like.
Last night is now mostly a blur, but I know we got up a few times, Timmy and I. No falling asleep in the chair though, thank goodness!
Along about 6:30am Landon came into the room. I'm so very glad that he likes to climb in with me and go back to sleep for a while. Not long after, Timmy woke up for another feeding and, while we were rocking, Trevy came in, announcing, "I'm tired." so I told her to lay at the end of the bed and sleep some more. She fell asleep on the floor again.
One thing about having your room/bed covered with kids is that it forces you to get up. I helped Callie get her bowl of cereal around 8:00. (The girl is a cereal fanatic! But the cute way she asks for "seeral" each morning is impossible to resist!) I have been working at getting the kids to only eat in the kitchen/dining room. However, since voicing the request, I think our living room has seen more boxes of cereal come floating in than before, not sure why. Again, the Smacks found their way into the living room several times today. I really need to get a safety latch on the corner cupboard one of these days!
Our two things scheduled for today were Timmy's appointment with Dr. Parry (ENT) at 1:50 and Trevy's ballet class at 3:00. James had a couple of errands to run so he did those around 9 while I stayed home with the kids. My goal for the morning was to get all the clothes, blankets and boxes cleaned out of Timmy's room. I was really glad I did because there was a box that had two cute newborn outfits in it buried under the load of laundry that's been sitting there all week. Hooray! I needed one for today anyway. Bless Timmy for sleeping in. He woke up around 11:00 when I found the clothes. So I got him dressed and started working on getting him ready for his appointment, myself showered and dressed and the other kids dressed and ready to go to ballet and the zoo. The next thing I knew, it was closing in on noon and I had been only remotely successful at getting the kids dressed. Trevy spilled Tang on her original shirt so that had to be changed. I was shooting to get myself and Timmy out the door around 1:00 to pick up a prescription on the way to his appointment. Also very much hoping to have the diaper bag packed for James and the kids dressed so all he would have to do would be to get shoes on them and get them to the zoo. (We were meeting Yvonne and her girls there so that one of us could take the older girls to their class and the other two could take the little people to see the animals.)
This is where the chicken part comes in. I started at 11:00 trying to get clothes on the kids. They sort of cooperated; Timmy needed feeding; I needed a shower; diaper bags needed to be packed; carseat base needed to be put in the Honda so James could take the van... It just seemed like the list never got any shorter and by the time I was finally able to get Timmy and myself on the road, it was already 1:35! No time to stop for the prescription. No diaper bag filled for James, hoped he could find shoes for everyone. Not that I doubt him, I've just been rearranging all the kids things and would have a much easier time finding them than he would. Snacks and sippies were optional at that point, although as hot as it was outside, I hoped he'd at least throw in one sippy full of water.
We made it to the ENT clinic at 1:53. Yep, we were late. So much for my record! But we were there and I had all the paperwork already filled out so at least I didn't get any dirty looks from the receptionist. Apparently they were running a little behind too because Timmy didn't get to see Dr. Parry until closer to 2:30. (I was a bit frazzled and didn't actually look at the time, but we left at 3:00.) It all worked out because Timmy was hungry. The very nice lady next to me said she didn't mind if I nursed. (I never just "whip it out," but I know just knowing what you're doing behind the cover bothers some people and I hate to offend.) She asked if Timmy was my first and I told her no, he's number four. She made my day by telling me she was impressed because my hair is still long and I looked so together. Wow, I really needed that. Pretty sure she was lying...
The visit with Dr. Parry went well. He just checked out Timmy's trach and asked if I had any questions for him, as it looked like we were pretty comfortable and doing a good job with taking care of the trach. The only question I had was one that has been asked me a few times - how does the decannulation process go? When that time comes (and we're nowhere near there yet, unfortunately. Dr. Parry mentioned that again. Timmy needs to be much bigger, "about four times the size he is now." He is already significantly bigger than when Dr. Parry put the trach in, but he needs to be over 20 pounds for decannulating.), Timmy's trach will be capped, meaning he will still have the trach in place, he will just pass the air around it. This will allow him to adjust to having the air moving up his throat and out his nose and mouth again. I asked if Timmy will have successively bigger trachs as time goes on and he said not necessarily. Hopefully not. If the 3.0 Neo is working fine for him, we'll keep the smaller trach. I also commented that I didn't know whether or not Timmy had started a new trend in the NICU with velcro ties. Apparently he did because Dr. Parry had to trach another kid recently and he got the velcro ties too. He said that it's much nicer. Otherwise you end up with four more scars from the stay sutures. (Believe me, Timmy has enough scars. Grateful to skip out on any we can!)
(For those wondering - and I've been asked - he is able to breathe without his nose because none of us use our nose to breathe. We breathe through our noses, but we don't breathe with our noses. It is the expansion and contraction of our diaphragm and resulting expansion and contraction of our lungs that draws the air in and pushes it out. How does Timmy eat with a trach? Through his mouth. The esophagus bifurcates (branches into two) a little ways below the tonsils. When we swallow, the epiglottis (which is like a swinging door) closes to block food from passing into the trachea, the windpipe. The food we eat continues down the esophagus and through the rest of the digestive tract. The air we breathe, on the other hand, passes through the open epiglottis and into the trachea and down into our lungs. Timmy's trach only extends into his trachea so his digestive tract isn't bothered in the slightest.)
Back to decannulation. Once the trach has been capped for a good length of time (The doctor didn't state specifically, but it sounds more like weeks than a couple of days), the trach itself will be removed. At that time, Timmy will be readmitted to the hospital for at least 24 hours for surveillance. I am just hoping and praying that this day will come sooner rather than later and that all will go smoothly.
Timmy was very alert and smiley for Dr. Parry. It was so nice to see. The thought came to me that that's all the matters, Timmy being happy. He made motions last Saturday like he was laughing and it broke my heart not to get to hear him. I need to just remember that this is only a temporary thing. And he is a very happy baby so that day will come. As long as Timmy's happy, that's really all that matters.
At checkout, the secretary told me that she was a former preemie herself, born at 7 months. Her mom, apparently, thought she was an ugly baby and would hide her under the bed. Her grandma, on the other hand, loved to pull her out to show her off to people. How sad! She's a rather attractive woman so I'm not sure what her mom was thinking.
Timmy and I left the parking lot at 3:00. Traveling with a trached infant definitely takes longer than usual. Especially with a cold. Timmy needed plenty of suctioning while we were in the office and before we left and when we arrived anywhere.
I called Yvonne and James to let them know I was on my way to the zoo and Yvonne met me at the entrance around 3:15 with the other four little people. I was very impressed! She had Landon, Callie and Olivia in our triple stroller and was carrying Vivian. Makes me wonder how long it's going to be before I can take my own four out by myself!
We took the kids to the Kenya-Get-Wet play area and let them soak themselves. While there, Landon bit Vivian. Not sure where he got the idea to be such a biter. Such a terrible feeling to look up and see your child with their mouth on somebody else's arm.
The zoo closes at four so we didn't stay too long. We met James in the parking lot. It was a hot day so we swapped kids out pretty fast and got on the road. James's report was that Trevy was quite possibly the worst student. Not dancing-wise (although that wouldn't surprise me, as neither James nor I can dance worth more than comic relief), but she just didn't want to listen to the teacher or do what she asked. This could be a looooooong six weeks!
Madi, on the other hand, decided just last week to give herself and Vivi another haircut. Poor Yvonne. Two days prior to their Primary program, Madi scalped herself. Vivi just has a good chunk out of the back, but Madi took her own hair very short around her face and Yvonne said there wasn't anything else they could do but cut it all short. (Or let her have a mullet and that look is OUT!) One child commented that Madi now looks like a boy and another woman mentioned that she thought Madi looked, "like a sickly child." Neither of these are things you would like to hear so if you see Madi, please be nice.
James drove the kids home, I picked up the prescription and followed. It was nice to have so many leftovers to put out for dinner. It was just an exhausting day.
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