Milestone Nearly Reached!

Tonight after dinner, Tim had Hannah on the floor and was practicing her sitting... she sat unassisted for about five minutes!! Yay Hannaahhhh! 

It’s so interesting experiencing a typical baby’s milestones versus a baby who is a bit delayed; what you took for granted now feels like an even bigger deal with Hannah. I try not to keep tabs on the typical babies her age who are already standing and walking... I mean, that was Nora! We are taking huge pleasure in Hannah as her own person today.

In addition, she’s started to really get the hang of “chewing” - she’s swallowing more food bits. My Mom had the girls this past weekend and even she noticed the difference. 

I really have to hand it to my amazing babysitter - without her and her kind/open heart and dedication to our girls, I’m convinced Hannah wouldn’t be nearly this far along. 

Perhaps she’ll meet our “goal” of really sitting by one year old : )

*Also, these photos show the chaos of a weekday post-dinner blur. Literally.

Words & Language

Sticks and stones? Sometimes words can sting.

I feel like I’ve written about this before, but those words/language have been popping up again.

I’ve caught a few of our medical professionals lately saying the term “Down’s babies” or peers who say the same phrase. It rubs me the wrong way. I’m still not sure whether to correct people or not. The medical professionals are who surprise me most - I just assumed they were trained in people-first language - ?!

Most of the community in North America winces a bit at “Downs baby/kid.” Would you call someone an “ADHD baby” or an “Autistic kid?” Probably not - they are still a baby/child - with a name! - who happens to have a condition. Like I’ve said; conditions do not define a person. It is a characteristic.

I’ve also read literature about “our kids with disabilities”... I know Hannah will learn gross motor skills a bit slower and may not be cognitively up to speed with her peers, but I truly don’t see her as “disabled.” She’s very able-bodied, just taking a bit longer to hold her head up, roll, and sit. 

I’ve mentioned before that the words “normal” and “healthy” have a new meaning to me. “I just want the baby to be healthy.” You mean without Ds or an organ defect like my baby? Shoot, I know I’ve said the exact same thing. I listen to people say, “Thankfully the baby didn’t have a genetic disorder...” My immediate thought is, “What - thank goodness that baby isn’t like my Hannah? Is Hannah NOT normal or healthy?” I can’t help it - Mama Bear bristling and protective of her baby. But I do know; everyone wants a “healthy” child. No one wants their child to have a condition to hold them back. 

I know intentions are never bad, nor directed. It’s just hard not to be sensitive to certain words and phrases that have underlying meanings. Though I’m sure most times people don’t realize it. I try not to be overly sensitive and don’t want people walking on eggshells with their words. I think Tim is probably way better at shrugging it off than I am. 

I also sometimes find myself with slight resentment - ugh : (  I hate it. I don’t want to feel that way. Not even from the Ds diagnosis - it’s more from not being able to really hold/snuggle for those first 17 days, not being able to nurse for medical reasons... All those picture-perfect images you imagine and see with a newborn. Those moments I gratefully did experience with Nora. 

We’ll have constant hurdles for Hannah. Eating. Walking. Schools... ugh, I can’t even think about the schools yet...

Well that was some rambling, eh? Sometimes you just need your train of thoughts out! 

I do have an awesome life! And so does Hannah, Nora, Tim AND Ailo! : )

Follow-up Echo: Post Heart Repair

Tuesday we had Hannah’s post-surgery sedated echo. This has been I think her 4th echo, 2nd sedated. The morning went very smooth and we were out earlier than we thought - win!

The anesthesia was given through her G-tube and she was asleep under 10 minutes. It was during her nap time, so that probably helped a bit. 

Waiting around 7:30am!

Again, the trippy lights to help kids asleep - !

More trips lights and calming “fishbowl” on TV.

While Hannah was asleep, I asked the sonographer and RN about her chest because its healed up a bit pigeon-chested, sticking out a bit. They both looked at me like I was silly - ! “Oh she looks great! We almost couldn’t tell she’d had a repair. We’ve seen kids heal much worse.” - ! Okay, well that eases my mind a bit. 

EKG while she was still asleep. Those are fast and easy.

You can’t leave the room until you force your child awake - ugh! The nurse SAT Hannah up and was tickling her neck, etc. I realize it’s for safety reasons, but who wants to wake a sleeping baby?? She woke up and acted like a drunk baby. Not kidding - it was funny/weird.

We made our way into an exam room to follow-up with Hannah’s Cardiologist. Nutrition came in first because I’m just not sure about Hannah’s “diet” - All. Formula. We’ve had two more speech therapy appointments with some slight tricks. We’re using puffs, thickened purees, Baby Mum Mums and yogurt melts. Anything and everything. Basically Hannah is pushing everything out with her tongue - she hasn’t learned to push food back and down. Everyone keeps saying “It will click...” It’s been 3 months of practicing. Talk about a lesson in patience for one of life’s most necessary skills : (

I digress - Hannah’s Cardiologist said Hannah’s heart looks great and we can come off her final medicine [blood pressure] next week! Woo - hoo! One less thing! We won’t need to see him again for 6 months - that’s a long time based on Hannah’s history. 

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In more fun Hannah news, she’s crazy rolling now, pushing her butt into the air while on her back and babbling a lot - we’ve got some “Da-Das” - yay! Her core is getting stronger so we’re not sitting yet but we’ll see if we make our 1-year goal : P

Summer Sisters

Two photos my sitter took last Friday of the girls : ) 

That Nora.

3 Years, 8 Months

After leaving Nora again while we were in Children’s for Hannah’s croup, we swore Nora grew up again. Just the conversations and behavior I guess is the best way to describe it... 

The goofball’s favorite word now is “Booty Butt” which I think she learned from the sitter’s daughter : P

Last night I was putting her to bed. Each time she leaves her room at night, she gets a strike. Three strikes and we shut her door so she can’t get out. Last night on the 3rd holler, she opened her door but did not technically leave her room which she pointed out to me. 

“What do you need Nora?”

“I need something to make me cozy. Ummm... how about the big chocolate bar downstairs?”

Well played, child. Well played.

Nora’s 1st sparkler!

Nora with Daddy’s glasses - hahahaha!

I turned around and she wrote her name - !

Haircut & Oatmeal!

A turtle in our driveway!!

Schmidt Family Trip

I’m about five weeks behind posting this - the Schmidt Family “reunion!”

Tim’s Mom’s families all gathered at Wilstem Ranch [close to French Lick, Indiana] for a long weekend. Or in our case, just a weekend, since Tim has about one day of vacation left.

It was a bit of a drive, but we timed it between bottles and it went well. We were in separate lodging since there were so many people. It was great to see family from out of town. Unfortunately it rained half the time.

Also unfortunately Nora tried to keep up with the older kids which just wore her out and she became a little monster after a 2nd day with no nap. Both nights I was back in our house before 8pm since we have small children.

Drink & magazines alone on the first night!

I was able to not only go on a fun wagon/tractor ride with Nora, but was also able to accompany her on her first horse ride! It was probably my favorite part of the weekend - she was such a big girl! She had no problem with the ranch hand lifting her onto the horse and immediately took the reigns - !

Strangely enough we met this horse - Sunshine - the day before, and Nora declared Sunshine as her favorite horse and requested to ride him the next day. I flippantly said “Yeah sure.” As we walked up to the farm yard, she said “There’s Sunshine!” I said “Mm-hm,” not being able to tell the difference between any horses. Lo and behold, it WAS Sunshine. So sweet.

She did great and was just quiet and contemplative her entire ride like a big girl as I walked beside to make sure she was safe : )

Nice little trip!*

*I’m a firm believer that “trips” happen with children - at least until they reach, like, 10 years old?? “Vacation” does not involve children. : )

Nora and her 1st Cousin Once Removed [?!] Janie. 

Nora & Janie on the wagon ride!

Traveling with two small children.

Girls asleep, we had a drink[s] while watching a listening to a rural wedding reception!

Nora on Sunshine!

Big Girl Nora!

Crappy End to a Crappy Week

Thursday my Mom graciously agreed to come down to watch the girls; after 36 hours of Crazytown, Hannah was still sick and Nora was showing signs, so I wanted to keep them home. Hannah slept all day and Nora actually woke up with no symptoms! Small win! 

Today was supposed to be a “normal” day - I took the girls back to the sitter after over a week. Everyone was happy to be back to routine. Hannah had a rough morning coughing up yucky-ness and she spit up some of her bottle then pooped - sheesh. 

I was enjoying [!] a day at work when 1pm I see my phone ringing - the sitter’s number. Son of a B*tch! Never a good sign...

Hannah had woken from her nap very warm - sitter took her temp rectally [very accurate] and it was 103.9 - ! I apologized to my Director for again having to dip out for my daughter and went to pick the girls up. 

Hannah looked beat - tired and warm. Sitter had given her Ibuprofen. I took them home and Hannah napped 2-3:30 when I woke her up because thankfully we’d already had a follow-up with the Pediatrician about the Croup. 

After listening to her chest and hearing a fever came back after having steroids, the Ped was a little concerned and wanted us to get a chest x-ray to rule out pneumonia. Awesome. It was 4:50 and Eastgate supposedly closed at 6pm.

I put the girls back in the car and headed down one exit on 275 to the Eastgate branch of Children’s, got my girls out in the rain only to walk up to the door to see the location and hours of Radiology had changed as of just this past Monday. I nearly fell over. 5:15pm.

Used my phone to go down another exit on 275 to the Anderson Children’s Branch - arrived at 5:30pm. They were very quick and Hannah *loved* her x-ray as usual. I think this has been her 5th chest x-ray in under 11 months - ? Nora “helped” take the pictures behind the window. 

Got home at 6:15. Pediatrician called at 6:30 - Hannah’s chest was still a little Croup-y and she doesn’t for certain have pneumonia, but something small that could be the start, so they are putting her on a 10-day antibiotic. More meds! Wheee!

And the cherry on top of my day? This:

Big ol’ limb fallen on the deck - thank heavens nothing was damaged. 

Sigh. I feel like I’ve gone through two weeks in this one.

I’m trying to keep perspective. AGAIN. 

Home After 30 hours...

Well that was a whirlwind... 

Two nurses remembered us from Hannah’s heart recovery. Which is funny because we were only in ICU about two days.

Anyway - Hannah is SO much better. Looking back - which was only about two nights ago - it was frightening thinking about how much she was struggling to get breaths. At 2am you’re so tired you kind of pretend it’s not happening, but then when you realize it’s time to pull the trigger for the ER - it’s a little frightening. Before we got in the car, I took Hannah outside to get some humid fresh air which actually helped. Thanks Internet! 

Our night went mostly well. Tim and I attempted to leave for dinner while Hannah was sleepy. However, when we returned just over an hour later, we walked into the nurse attempting to soothe and comfort a screaming Hannah - which was super upsetting. It made me feel so guilty leaving the hospital to eat food.

Hannah had her 7pm feeding , however after sleeping almost straight from 7:45am-2:45pm, she wasn’t super sleepy. She finally fell asleep at 9pm. 11pm a nurse tried to take her blood pressure which pissed her off and I had to soothe her back to sleep. 2am Tim had to do the same. Then she slept until about 6:15 which is about normal time so I got up with her. 

So as wonky as that sounds, I actually felt somewhat rested. 

Aunt Stephanie came to bring us bagels and visit. Hopefully her last time to visit us at Children’s for a very long time! 

We were discharged at 9:30am and went to get Nora from Nana’s house. Thanks again to Nana for being there for us as well as Aunt Amy & The Boys for letting Ailo out to pee : ) 

Tim and I took the rest of the day off. I did four loads of laundry... I was supposed to host my bookclub but around 1pm I started feeling like crap. And guess who else started sounding congested?  Nora. Sigh. 

I learned from a Physician at Children’s that Croup is not the name of a virus - it’s the name of a collection of symptoms; barky cough, constricted airways that make you wheezy... So basically Nora and I probably have the same virus, but it would not manifest itself into Croup because we are bigger and stronger. Did you know that? I did not. 

I don’t think I’ve been sick since having two kids. I passed up my hippie remedies and went straight for the Alka-Seltzer cold. I feel pretty decent now. 

Can I take a week off of being a grown-up? 

Nana was sweet enough to make us brunch and Nora decided to not only wear a bib, but also Daddy’s glasses. I can’t stop laughing...

Back in Children's : (

Hannah has croup. We have been at Children’s since 3am.

Girls haven’t been to the sitter’s since Wednesday [!]. Thursday they were with my parents at home and then we had a very full holiday weekend. 

Sunday night got a message sitters’ kids were sick. Monday AM found they had croup - ! Her kids are 3 and 4, simply got a steroid shot which keeps things in check.

Well Monday while I was at work, my Mom [watching the girls] kept in touch with  me and Hannah wasn’t keeping her bottles down, had a cough, sneezing... Mom continually took her temperature which by mid afternoon was up to 101.5. And being the awesome parents were are, had no Infant Ibuprofen in the house. 

Tim got home early, the Ibuprofen worked fast thankfully. We all went to bed somewhat uneventfully. We had Hannah’s humidifier running. Tim gave her more Ibuprofen at 10:45. 

Well 2am is when the seal-like-barking coughs ramped up - tell tale sign of Croup. After some feeble attempts of soothing her and seeing her struggle to breathe with major retractions, we decided to go to the Emergency Room. 

Nora was a trooper. Very good Big Sister. 

Got here at 3am. It must have been a slow night because our ER bed was immediately surrounded by about 10 medical residents. Nice. Hannah was given a breathing treatment and steroids. The steroids will stay with her 5 days as the virus works its way through. 

We were moved to a holding room around 4am. Got another breathing treatment at 4:15... then waited. Finally at 6am moved to our old Cardiac floor for admission. With Hannah’s medical history and the fact that Croup is worst the first two nights, they want to keep us for a night. 

She’s doing much better. Breathing is still a bit labored. But is much more comfortable and has been sleeping almost straight since 7:45am. 

I’m also a little thankful for the G-tube as we can keep her hydrated. 

Good Ol’ Cincinnati Children’s - My Second Home®
And we haven’t even paid for the heart repair yet! Ay Dios Mio!

5am maybe? She’d been up since 2:20am.

Passed out. Always hooked to monitors!

Resting, resting, resting.

10 Months Old!

My gosh - we’re two months away from having a 1-year old - unreal. 

Just some photos here to show off 9 and 10-months shots : )