Friday, February 27, 2015

Kiddie Cabin 2015

Our new winter tradition of a kiddie cabin continues...

We’ve found a reliable, large, close rental in Peebles, OH that seems to be our new go-to house. 

For the first time all four families have made it! We are now up to 8 adults and 6 children ranging from 3 to 6 months. It’s something else! Not super relaxing, but at least next year I won’t be pumping : ) It’s just fun being contained and forced not to do any house-tidying. Plus we’re with some of our favorite people!

Sleeping in the same room with your children is quite hard. Hannah was easy, it was trying to get Nora down that proved the impossible task. The second night, Tim was on the floor and Nora slept in bed with me. Sheesh.

It’s crazy to think two years ago Nora was the only one walking at our cabin! Babieeees!

Photos courtesy of Miss Emma G

Making pretzel dough Saturday AM





Stuart and Hannah - two weeks apart!

Movie Night!









Tuesday, February 24, 2015

Hernia Surgery - Check

Tim’s procedure was Monday AM at 11:30, we needed to arrive at 9:30 so I was able to “sleep in” until 6:15am. Everyone slept like a rock Monday night after our weekend away with friends [will have to remember to post about it].

My amazing mother came to be with the girls while I took Tim. He went back at 11:45am. I got the waiting room call that they’d started at 12:10pm.

The nice thing about waiting in a hospital? They have legitimate lactation rooms for pumping/nursing mothers. I was able to hit it right after Tim went back.

After pumping, I grabbed a veggie sandwich and Sunchips, wolfed it down.

It’s also amazing that sitting by myself for an extended period of time makes me sleepy. Stopping movement and distractions allowed my body to slow down... it was hard to stay awake in the waiting room. Which was very eclectic. And made me germ paranoid. Anyone who has been in a surgical waiting room may be familiar with the public phone that operating rooms use to communicate with you. All I could think was “How many hands/faces/mouths have touched that thing??” Thankfully the tub of AntiBac gel next to the phone eased my mind a bit.

At 1:50pm the surgeon met me to tell me everything went fine - though it was one of the more challenging cases she’d had - ! I can’t even do it justice with words, so I’m not going to try... but Tim did also had an umbilical hernia so she fixed that while she was in there also.

I had to wait another 1.5 hrs until Tim came out of anesthesia which was 3:30pm. He was really out of it and it’s always strange/hard to see your significant other helpless like that. He was wheeled to a recovery room and we somehow got him dressed and slowly eating crackers and drinking water/juice. By 5:45 we had Tim in the car and were headed to the pharmacy for the big drugs. We didn’t get home until 6:45 - what a long day!

Thankfully my Mom helped put Hannah to bed so I could corral Nora... that has been the most challenging part of all this: keeping a 3 year old away from her father. The tears and fits she has already thrown have nearly crumbled me. 

With my Mom’s help I was able to focus on Nora’s bedtime. She amazingly did not come out of her room, so I was able to make bottles, do dishes, pack lunches and pump all before 9:15pm. 

I managed some okay sleep and in the mornings I have to get all my stuff out of the room and lock Nora out while I get ready and feed Hannah so that she does’t get on Tim. 

Recovery will be a big test of patience...

Wednesday, February 18, 2015

March Madness = an additional family surgery

We found out this past Thursday that Tim’s abdominal pain is indeed a hernia. We decided to schedule the in-patient surgery as soon as possible - you know, a week and a half before Hannah’s open heart surgery. * sigh *

Because:
1. Tim’s pain is growing
2. God forbid if Hannah’s surgery was bumped, we wouldn’t want to push out Tim’s procedure and further

We’re going out of town this weekend with friends which is a good thing - take a break from the daily house needs and just try to relax before Monday comes and my husband is laid up for two weeks of no work, no driving and no lifting above 10lbs. Hannah is 12+ lbs. 

So needless to say, my anxiety is ramping up. I’m trying to be sympathetic to the rough recovery Tim is going to have but keep thinking how hard it’s going to be to handle a 5 month old and an even more demanding three year old. Thankfully Grandmothers are on call and we have a close-by sitter and everyone kindly says “Let me know how I can help... ” 

I’m not even thinking about Hannah’s surgery yet. One hurdle at a time. 

I just hope we make it through March in one piece...

Thursday, February 12, 2015

The Epic Pink Wall Tale...

We thought we’d give Nora a treat and paint one of her walls. I agreed to let go of some control and allow one pink wall. Which of course means I wanted coral. 

We got the paint and I taped up the wall [I prefer taping, Tim prefers rolling]. 

Nora was doing fairly well gently assisting Tim while I was tidying downstairs, Hannah in her swing. 

Leaving her puzzle behind, Nora went upstairs during the process and I heard a scuffle followed by Tim bellowing, “CHRISTIIIIINE!”

Sh*t.

I ran upstairs to find Nora crying with her head hanging, foot covered in pink paint which was also slightly splattered on the carpet. !@#$ She stepped in the paint tray. I whisked her to the tub to clean up, she was very sorry for what she did, so I did not scold, but told her she needed to listen to Daddy. 

Meanwhile, in a rush to clean up, Tim grabbed Spot Shot - a carpet cleaner that should not even be in our house due to the toxicity of it... after spending time attempting a clean-up [which was futile], Tim felt sick after being in the room with it for a short amount of time.

Spot Shot is awful - fumes worse than paint in my opinion [but of course we used No-VOC paint]. Tim regretted his knee-jerk reaction, tried to neutralize it with soap and water to no avail. 

I told Tim to cut up the carpet. 

I would rather have paint on the carpet than those fumes in my house. I am that cuckoo about what my family inhales. Tim cut a hole in the “poison” area and we went out and bought a carpet pad and rug for Nora’s bedroom. It’s a bandage for who knows how long. 

Nora slept in our room that night because there were still slight odors. Luckily it was slightly mild outside so we kept her window open and a fan blowing for a good 24+ hours. 

So needless to say last Saturday was a bust. However, Nora’s one pink/coral wall is nice and very bright [!] and full of Minnie Mouse wall decals. I never thought I’d have this girly of a girl... 






Sunday, February 8, 2015

5 Months!

Did you realize time speeds up the older you get? 5 months?!


Down syndrome isn’t hard. We just happened to get a few extra hurdles - am I right? I think the hardest part of Ds is trying not to compare your child to other typical children and their milestones. Nora has been advanced her entire life, so it’s a different experience learning patience with Hannah’s development.

My personality is the type for meeting expectations... I push Hannah with her exercises and she’s doing very well holding her head up now. We’re slowly getting her into the Bumbo as is her babysitter. I was excited at dinner to see Hannah reaching for toys while sitting in her swing - reaching is a new move for her!

I will always push Hannah [as I do Nora] to learn and develop to their best!

Wednesday, February 4, 2015

Night Out!


This past Saturday we had tickets to an actual concert - ! Whaaaat!

Tim learned about a honky tonk/country guy named Sturgil Simpson who tour was making a stop in Northern KY. Another couple whom we’re friends with got tickets as well - we were so excited because I can’t remember the last time we’d gone out with the Trowbridges. 

Tim and I had to drive [instead of taking Uber] simply because of my need to pump in the car. I look forward to the day that black bag isn’t with me everywhere I go. 

We hit OTR for what we thought was an early dinner - 6pm. That’s early for a hipster neighborhood, right? We put our name in at the new German restaurant, Krueger. 45-minute wait. We accepted it and sat at the bar to catch up and have a drink. That alone was worth my parents graciously coming down to watch the girls and spend the night. 

After one hour, we said “Forget this,” and ended up going to Taco Bell. You heard me. Fast and good. 

Krueger ended up calling my cell [they take it for your table] at 7:45pm! Unacceptable. The owners have at least two other restaurants on that strip so there’s no excuse for a 1hr 45min wait. And who the hell would wait that long for a sausage??

I digress, the show was fantastic and probably over-sold. Way too crowded. Sturgil Simpson sounds like old [good] country and it was fun. My airways were exposed to various smoke that I’m not used to and my voice sounded super froggy when we left. I don’t get out much huh? 

My head hit the pillow at 12am - way, way too late for me. My body woke up in the 5am hour because I guess I’m just used to it. I could hear my Mom and Nora up at 6am, so I finally joined them at 6:45am. 

Fun night, but I just can’t hang that late... at this time. 


Bronchiolitis : (

5 Months

Hannah had a bad reflux day this past Saturday. She started a small cough which wasn’t abnormal - she coughs here and there, residue from acid reflux I think.

The cough was still around Sunday... and Monday. No fever, no runny nose, just a cough that went from dry to slightly wheezy/raspy. 

Tuesday my Momma gut brought Hannah to the Pediatrician. Hannah’s oxygen levels are never 100% due to her heart, but they were a touch lower than her normal. They actually gave her a breathing treatment: a small breathing mask that I had to hold over her face [of course] with an attachment that vaporized medicine into her airways. The meds were supposed to help break up the mucus that she can’t get rid of. The nurse left and said "10 minutes" - ?! Argh! I’m tired of restraining my child for various poking and prodding! 



Hannah was tired and fought a touch, but eventually fell asleep. Her oxygen rate went up a bit after the treatment. Dr confidently said Hannah has bronchiolitis; she caught a cold from someone which manifested into an inflamed bronchial tube. As always, it’s a virus, so we’ve been running a humidifier full steam [ha] while she sleeps. 

She had less coughing last night, and less this morning. Even the sitter noticed her cough wasn’t as raspy as yesterday - so fingers crossed this thing is on it’s way out. If we see her getting worse, we could need overnight monitoring at our second home [Children’s]. Hannah’s a tough booger, so hopefully we kick it by the end of the week. 

By the way, Breastmilk, where were you in this defense - ?! This is why I’m still pumping 6X a day *grumble.*

So while Hannah had a somewhat better night last night, Nora decided to come in a attempt to quietly wake Daddy up to lay with her at 1:30am. She became frustrated when he didn’t wake up and made frustrated “Christine” noises. I woke up, and Nora lost it, screaming she wanted Daddy. I eventually tamed the monster and got back in bed, barely got back to sleep when Nora came back in around 3am. 

Net, my “sleeping” last night:
9:45pm-11:15pm [Hannah’s bottle and coughing, reflux, and poop]
12:30-1:30
?
3:30-5:45am

There was a full moon last night.

It’s amazing that 4 straight hours of sleep seems like a good thing now.

Monday, February 2, 2015

Meeting Hannah’s Surgeon + Surgery Information

5 Months

Friday we met Dr. Roosevelt Bryant, Hannah’s surgeon. He was a nice-enough man, maybe late 40s/early 50s and a big dude - like at least 6' 4" - I’m not sure if they use machines to maneuver around these babies’ hearts or hit large hands actually get the job done. He was pleasant and talked pretty text-book like to us about how they would repair Hannah’s heart. 

The total time she’ll be in the OR will be 6-7 hours. Only about 2 1/2 of those hours will be the reconstruction. The rest of the time is getting Hannah on/off the heart & lung machine that will bypass her blood away from her heart. 

They’ll take tissue from the sac that surrounds her heart and make a mesh wall inside that will grow with her. Same for her valves. 

Her time afterwards will be split between the ICU and a regular hospital room. ICU is on average 2-3 days, then up to 10 or so days after - on average. Dr. Bryant said most complications arise with children who are weaker, are in and out of the hospital frequently. He thinks Hannah seems to be in great shape heading in. Most complications fall in the 5% chance of happening. 

We asked what could cause her surgery date to be bumped earlier and he said if a child is too sick for their surgery date, this can cause an earlier opening that we may take. We would get 24 hour notice and of course we would take it. 

So we’re just waiting to get to our date. I just hope we aren’t bumped later

After our consultation, they needed to draw more blood for another thyroid test. Flipping flippity flip. Again, the tiny tourniquet with crazy intense screaming from Hannah and me sweating as I try to soothe my poor baby. I would rather give blood 10X in one day than have them draw blood from her little arm. 

Onward!