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!

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.

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!

Flip Floppin’

5 months Week 4


So much going on - Nora has definitely been a hoot and very fun! She finally has some strength to sit in the Exer-saucer, or as I like to call it, the Over-stimulation Station. She loves it and we love that we can keep her busy in it! 


Nora also started sleeping on her side which inevitably led to - rolling over! She accomplished the feat this on Memorial Day while trying to go down for a nap. I went to check on her and she was on her stomach with a fearful look: “What just happened and how do I get out of this?” During playtime, she managed it again and once we clapped and cheered for her, she smiled and kicked her legs - she knew it was a good thing! And now she can’t stop : ) 


Cereal has been going great - just brown rice at this point. I think I’m going to cook up veggies this week and freeze some servings to try out this weekend - first up will be green beans! 

Hollywood Stroller

5 Months, Week 3


A better view of the sweet stroller that Aunt Molly & Uncle Jonathan gave to Nora - it actually came from a legit Hollywood party. So we’ve dubbed this the Hollywood Stroller. 


Nora’s pimpin’!

Mother’s Day

5 Months, Week 2


I think I’m going to enjoy Mother’s Day - mainly because my birthday is going to essentially disappear with Nora’s being on the 4th. And with the holidays the focus of December, it’s nice to have a Spring holiday dedicated to me!


Nora gave me a amazing giftcard to my salon, but I’m not allowed to use it on my hair - helloooo massage! I figure I should enjoy these gifts from Baby Nora because eventually her gifts will truly be from her and more “thought-that-counts” - i.e. handmade necklaces and drawrings : )


For Mother’s Day, my wants were simple: go visit my parents so Dad could see Nora [he hadn’t seen her since Easter], go on a nice run [which fell through due to an awful stomachache] and go shopping to try on jeans alone [accomplished]. 


We had a lovely visit with my family - however Little Miss Thang amazingly only slept 10 minutes on the way up to Tipp - fail! She stayed awake then entire visit and was thankfully not grumpy. We left at 2:30 and girlfriend was asleep before we hit the highway. Guess she just enjoyed herself that much!

Baby at the Dentist

5 Months, 1 Week


I got her gums cleaned. 


JKBFF!


However, I did not see the need to get a sitter for my cleaning and a good friend took her baby to her own cleaning, so I thought - I’m gonna give this a shot. It wasn’t awful, but it wasn’t without some hiccups. Literally - Nora cried until she was hiccuping.

We put Nora behind a wall while I got some x-rays - she was okay because the hygienist  popped her head back with every x-ray click. We went to another alcove to take more, and that’s when Nora was done with all the strangers. Thankfully the receptionist [who is also the dentist’s wife] was super happy to pick up Nora and hold her while I had my cleaning.

I heard Nora cry out every few minutes. She was not happy, but I felt that if I kept going to console her, she’d just get more upset. So I toughed it out, and after half an hour, walked up to reception to see Nora asleep on her shoulder! It was sickeningly sweet and the hygienist and I were just amazed! Poor thing had exhausted herself.

I wrote the staff a note thanking them for being so accommodating and flexible with us - true customer service!

Babies in a Bar

5 Months


Not really - it was the Moerlein House. Ol’ Kevin was in town briefly so a few of us met up for lunch down at the Moerlein House. Uncle Kevin got to hang out with Nora and she really enjoyed him! We also finally met little Alice Stender - she is just 3 weeks younger than Nora and Katie [Alice’s Mom] and I were in the same type of birthing class so we’ve taken this ride together! 


Nora did some mini-sleeping on the way there and home, as well as a bottle at the restaurant so she did great! It was nice to get out into public and enjoy some company. 


Oh and Moerlein House is really great - we recommend it : )

Uncle Kevin!

He’s a fun guy.

Mr. William practicing with Miss Alice.

Too much fun with friends!

Leaps & Bounds

22 Weeks / 5 Months


I’m amazed at the progress Nora has made as a person - I swear within just the past week, she wants to sit up more, is now interested in eating and drinking and has started reaching out for everything and anything. She really enjoys Ailo now and reaches for him and giggles and “pets” him. 


Saturday we tested out simply putting a spoon in her mouth and she opened up for it! So Sunday we gave our first cereal test! Nora was very receptive and opened her mouth, but did not like the new flavor experience! I’m not even sure she swallowed anything : ) 


She also reaches out to grab my drinking glasses so I gave her a small plastic cup to play with which she liked as well. The baby’s growin’ up!

This is what I do, right?

I’m a big girl too!

Sloppy, sloppy cereal.