Thursday, April 10, 2014

April 10 on 10: Lisa

First, I realized that I forgot in my March post to say thank you for all of those who gave me so many words of encouragement while the twins were in the hospital. I really appreciated all of your support. Thank you. 

Real life with the twins home is now in full swing. Enjoy our day. 

4:45: Clancy woke up early starving. But, who could be upset to see this face?


8:30: Waiting for Mom to get their breakfast. 


10:00: Playing outside with Aunt Amy. My brother, Justin, and his wife are here visiting for the week. Very fun. 



11:30: Shower!!!! Always feels like a luxury these days. 


1:00: Visiting Jacob in his office and going out to lunch. It was our first big outing with the twins (doctor appointments don't count). Usually they scream every time they're in their carseats. I'm happy to report they did well - much better than anticipated in fact. We may be able to go out in public after all. 



3:00: I guess nap time is going to be in the car today. 


3:30: Enjoying some quiet time with these two after they ate. You can see eating is exhausting to Zachary. 


4:30: Occupying the toddler so I can help Alyssa with her homework. (I might submit the first photo for Parent of the Year.)



5:30: Making bottles. This process has become more complicated in the last week as we've started thickening Clancy's milk to make it easier to swallow. Unfortunately, this means we had to switch him to formula as its difficult to thicken breast milk. However, since we've made the switch to thicker foods, he's started eating MUCH better. Today he even ate 4 full bottles and a couple half bottles. Very exciting stuff. 


Meant to take pictures of Breakfast for dinner and Alyssa doing Holmes. Hope you enjoyed our day.






April 10 on 10: Stephanie

8am: smoothies for everyone!

9am: a quick walk to the (ghetto) grocery store for some milk. Another beautiful day!

10am: school time

11am: I didn't take a picture, this hour was spent cleaning the fridge, vacuuming, and trying to keep Henry in our yard rather than bothering the neighbors. 

Noon: At the park

1pm: still at the park. It's hard to go home when it's this nice and the kids are happy (ie., contained and content)

Oops! Missed 2-5pm (had a play date at our house, weeded our garden, last bit of chores for the day)

6pm: datenight! Here's our meal (refer to my other blog for more details)

7pm: cuddling/storytime with Henry and Rob right before henry goes to bed for the night. 

8pm: A quick run in the last bit of daylight. 

9pm: after-run snack: the last two eggs from Rob's treat that he saved for me (two is generous when we're talking Cadbury mini eggs!)

Sunday, April 6, 2014

March 10 on 10: Lisa

I'm happy to say that everyone is finally out of the hospital and growing fat and sassy at home, in spite of some ongoing issues. Yay! Here is a glimpse of our day.

Early: feeding Clancy and Zachary (not pictured)


8:30ish: Breakfast and waiting for the bus. It has actually warmed up for a couple of days so she isn't freezing. 



9:30 was a blur trying to get out the door for Clancy's follow-up appointment with the surgeon. 

Here's what your appointment sheet looks like when you you get discharged from the NICU with a feeding tube (this is minus today's appointment). It also lacks the follow up appointments with OT and PT I still need to make. 


11:30: Babies, toddler and toys scattered everywhere. 


12:30: "No Mama!" I don't actually remember what he was upset about, but this is a face we see often these days. It's much more difficult to be a big brother than one might imagine.


Sometime after 12:30:Time to feed the babies...again.

So in February the time Zachary was getting ready for discharge, Clancy began having an enormous amount of pain associated with eating. Consequently, he would drink a bit from a bottle and then scream in pain. This went on for a few days and he then began to show the early signs of an oral aversion as he associated eating with pain and didn't even want to put the bottle in his mouth. As you can imagine, this isn't a good thing. Since he couldn't come home without being able to eat, we tried multiple things to try and stop the pain. They gave him medicine for reflux, changed his diet, and various other things, but ultimately we were faced with the choice to have Clancy stay much longer in the NICU, have him go home with an NG feeding tube (that goes down his nose into his stomach, like he'd had all along) or get Clancy a feeding "G-tube" which would require a transfer to the main Children's hospital and a surgical procedure.

We knew he needed to be home--so we needed to figure out which feeding option made the most sense for us. This was a difficult decision for us, but ultimately we chose the G-tube. I could go into a lot of details as to how we came to that decision, but I'll spare you the super long narrative. When we tell people Clancy has a feeding tube, most people tell us some story about someone they know with several severe disabilities and developmental delays. And I'll be honest, this was one of the fears I had in making this choice. But, they great thing is that this isn't Clancy. Aside from not wanting to eat because it causes his a lot of pain, his is growing and developing right on track--he's even socially advanced according to some. (I think this is from all the flirting he did with the nurses in the hospital, but who can blame the kid.)

So, to feed Clancy, we first offer him a bottle, which he will drink anywhere from 5ml to 45ml and then we will tube feed him the difference. We have more tests scheduled to figure out what is causing the pain when he eats, but in the meantime, it is getting better which is good. And I think no having a tube down his nose and throat is helping. We'll keep you posted.

A lot of people are curious, so I thought I'd show you some pictures of what it all actually looks like. Here is a picture of the "Tube" or "button". It lays pretty close to his skin and when we aren't feeding him, we don't notice it much. He can do tummy time, take a bath, etc. just like any other kid.


When it's time to feed him, we attach the tube extender. It locks into place and is nice as it doesn't leak or make a mess (unless I forget to clamp it before I remove the feeding syringe).


Here is the feeding syringe and our IV pole. Yep, we have our very own! I put his food in there, hook it to the purple connector above, and then gravity will help it flow into his belly. We don't know how long he will need his tube, but I am grateful we made the choice we did and happy to have him home.


Afternoon: Babies sleeping. Shhhhh....



4:30: Alyssa is home from school and taking a break by coloring.


5:30: Eating dinner with Nana. I wanted to make sure there was proof that we do eat something besides pizza.


Colin would rather have pizza.


Evening: Playing with babies.


As you ca see there's never a dull moment. Hope you enjoyed our day!

Monday, March 10, 2014

March 10 on 10: Stephanie

8am: He turned into a super hero first thing in the morning and wanted me to play with him. Usually I tell him I won't play with him until after I've read my scriptures and worked out, but I played this morning (yes, I had my own cape to wear).
9am: The kids while I work out. Typically on Mondays I work out at the church where they do classes M, W and F (how great is that!?). I usually bring Henry and sometimes June with me even, but I had too late of a start and didn't make it on time to go.
10am: Putting together the "firetruck" puzzle with Henry (it's double-sided and there's a firetruck on the other side). I think he could do this on his own but won't do it without Rob or I helping.
11am: "Mom school." He's making a straw necklace for fine motor practice and I discovered he didn't need the practice.
Also 11am: Somehow in the middle of Mom School the straws from the necklace became starting lines for a race ("race cars" are his favorite these days).
noon: Here is one of my lunch partners looking so sweet. 
1pm: Henry sits in boxes/baskets/bags at least once every day.
2-4pm: I made these rolls during these hours. Very proud.
4pm: She's trying to wake up from her nap.
5pm: Thank you children for entertaining yourselves while I finish the last of dinner prep. We brought and shared dinner with our friends in a hospital in SLC.

Tuesday, February 11, 2014

February 10 on 10: Lisa


Another strange 10th of the month. Zachary came home last Tuesday (Yay!!!) but Clancy has since stopped eating. Since the twins have gotten so old, today we had to start discussing options to get him home. So, plan is for Clancy to be transferred to the main children's hospital NICU where we can discuss putting a feeding tube into his belly. Sort of a rough day, but some good things too. Here's a glimpse:

Sometime before 6:00 am:

 
8:30: Alyssa hops on the bus. 


Sometime between 9 and noon: Hanging out with Clancy. He looks so handsome without his NG tube that he has once again yanked out. 



Later in the afternoon: Oreo face and low-riders. We like to keep it classy here in Ohio. 




 

Around 5:00: not sure but I think the dwarves got into Snow White's closet. 



6:00: Pizza night...again. But, it was fun to all be home for once. Poor Colin has far too many of his sister's hand-me-downs. 




7:00: S'mores for dessert (or "s'nores" as Alyssa calls them) 


Hope you enjoyed our day.