Another Busy Hannah Week:

11 Weeks

We had 3 appointments this week - 

Cardiology: Hannah now weighs 8 lbs 12 oz - go girl! The cardiologist was super happy with her weight gain. They want babies to gain 18-20 grams per day going into heart surgery and Hannah has been gaining 30 grams per day. She’s also met the “safe zone” in weight for open heart surgery, so that’s good too. 

So despite our regression in oral feedings, weight gain is more important right now. 

Mid December we go in for our pre-op sedated [yuck] echo, thyroid bloodwork and a chest X-ray. I should have asked, but if we’re getting a pre-op echo, it leads me to believe surgery would be in January - ? Don’t quote me on that. 

Speech Therapy: Hannah hasn’t finished a whole bottle by mouth since early October. It’s frustrating, but common for heart babies. Once we introduced more formula into my milk, she started having less poos and having a harder time finishing her bottles. Our Speech Therapist said this is very common for babies going into heart surgery to regress with oral feedings. We have found however, that Hannah eats more by mouth when she’s half asleep; not thinking about it! Interesting. 

Help Me Grow: Just came out to see how Hannah is doing today… I basically fill them in on how she’s doing… they still aren’t super involved yet because motor skills won’t come into play until closer to 6 months.  

Keep our Warrior Hannah in your thoughts as we keep on the upward path!

The Miracle Cure

10 Weeks

So Hannah had a clogged tearduct for the first weeks of her life. I’d taken a warm washcloth to it which is what the medical professionals had suggested. However, my friend Emma [who is all-things natural] said to try breast milk. Ta-daahhhh! No more goopy eye. 

I’d also used it on Nora’s baby acne and cradle cap which both worked well too. 

So if you know anyone whose baby needs a beauty treatment - suggest it!

Photo taken by Nora!

Hannah’s 2014 Group

10 Weeks

As we have slowly introduced ourselves into the Ds community in Cincinnati, we were added to the 2014 group - babies who were all born this year. It’s a nice small group of parents who get together now and then to form camaraderie around our children. While we love our family and friends, it’s even better to talk to other parents who are starting along the same path as us. 

We had a group social yesterday afternoon. Unfortunately, Nora has had a nasty cough so Tim stayed home with her while I took Hannah. The new Ds headquarters for Cincy are in Norwood now. There were maybe 15 people there - not everyone could make it, but such a small number makes it easier to walk in not knowing anyone, only their faces over Facebook. 

It was fun meeting the other parents - all super cool and was nice to talk to people who understand. We all talked about our diagnosis, what therapies our kids are having, any of their medical hurdles. Everyone “gets” it. 

I even met an adorable 15-mo old who is now crawling which was good to see what a “delay” is really like. She’ll walk eventually : )

It was a nice meet-up and cool to see who Hannah will grow up with in our community!

Hannah - 2 Months!

9 Weeks

Hannah is 2 months old! We had her 2-month well baby check up on Tuesday. I was pleasantly shocked that she’s 8 lbs and 21" long! That’s two inches longer than her 1 month - go girl!

Babies and children with Down syndrome have their own growth charts, so among her peers, Hannah is about 25% on weight, 50% on height and 35% on her little peanut head.

She got her 4 immunizations and one oral. It’s brutal - I remember with Nora, she went silent from screaming and I cried too. This time, Hannah cried for a short time and I knew what I was facing, so no tears here!

We’ve been doing tummy time a bit modified - on a travel neck pillow - to elevate her G-tube away from the floor and keep pressure off it. Pretty cute faces!

Then today was a small milestone - we moved from the G-tube to the Mic Key button. It’s a lower profile and less of a nuisance in general. The surgeon doesn’t want children under 2 months having them [can’t remember his reason]. 

Our surgeon actually did the swap IN the exam room - it was a little crazy - he pulled out the G-tube and it gushed a bit with stomach contents - *yak* Hannah wasn’t a happy camper and when all was said and done she zonked out. 

Also today, she weighed 8 lbs 4 oz!

Then this afternoon, Help Me Grow stopped by along with a physical therapist. She taught me some different tummy time positions and some side-lying positions. Essentially, Hannah’s limbs want to frog out and we want them midline. We also of course want her neck strength to increase. 

They were already impressed with Hannah’s head strength, movements and her eye contact. Go Hannah! 

It’s been a busy week for our baby girl - she’s making strides : ) 

This is not Hannah, but this is what her button looks like

Halloween 2014

The Kron girls enjoyed their Halloween - well, Nora did. Nora had picked out her costume a while back from our favorite childrens’ second-hand store in West Chester, Little Sprouts. She wanted to be Minnie Mouse and the dress was $10. Nana provided the ears! 

Nora was geezed to go trick-or-treating. We tried to bundle up as best we could in the low 50-degrees. We hit the street right at 6pm. Nora talked the entire time, just bubbling with excitement. She said “Trick or Treat!” to everyone and thanked everyone for the candy. My big girl asked to go home after 5 houses - perfect! 

We may have a bit of a candy monster for a few days; but to give her that excitement and enjoy that evening with my little girl who is a super challenge now days - worth it. 

Family Filled Weekend

2 Years, 11 Months
9 Weeks

This past weekend Aunt Molly and Uncle Jonathan were in town for a quick weekend - we were happy to spend most of our time with them. We even celebrated an early Thanksgiving since they were home - yum!

Nora and Hannah’s older Kieffer cousins are so good with the girls - Bobby even asks to hold Hannah - awww!

Hannah Photos

7 Weeks

Not a lot of variety here, just cute stares by a 7-week old!

Adjusted Tummy Time on a neck pillow!

Birds’ Eye view

Nora Photos

2 Years, 10 Months

Just some Nora photos from this week! Lots of pretending around the age 3. 

She ASKED to be tied to the fridge.

Feeding her baby.

Wearing her good friend’s Halloween costume!

Banana + Tinkerbell

Figaro - you know,  Minnie Mouse’s cat?

Becoming closer buddies with Ailo.

Cardiology Check-In

7 Weeks

Again shocked at how long it takes to see anyone at these appointments. I can now say my expectations are set and I can be prepared for half my day to be used up. 

Today was a 1:10pm appointment. 

11:30 pump
12pm feed Hannah
12:15 leave 12:50 check in to Cardiology
1:40pm called to be weighed
1:45pm put in a 2nd waiting room. 
2:35 Dr. Lisa [fellow] sees us
2:45 Dr. Kimball sees us
3pm Get coffee and feed Hannah since it’s been 3 hours (My boobs are about to burst)
3:45pm Leave Children’s
4:30 Get home and finally pump 5 hours after my last pump

I digress - the Cardiologist was very happy with her weight gain [6 lbs 15 oz!] and since she has steady breathing while she’s sleeping, we’re holding off on medication. We also do not need to see him for a month. 

Good report!

I Can't Complain

A family member posted this on Facebook and I had to share - it’s so true. It rubs me the wrong way when people complain about petty things. I know people who have lost both parents in one year, her husband when their son was only 8 months old… Our family is facing some serious hurdles right now, but I still try not to complain because we have good jobs, a roof over our heads, running water and good insurance [!]. 

I Can't Complain