Friday, October 24, 2014

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.

Tuesday, October 21, 2014

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


Friday, October 17, 2014

Help Me Grow

6 Weeks

As I’d mentioned in an earlier post, children diagnosed with Down syndrome are eligible for early intervention programs in their county - ours is Help Me Grow with Clermont County. I’ve heard great things about our county’s program, so I’m looking forward to it.

I’ll admit I’ve seen billboards/ads to support developmental disabilities in the past and now know what those tax dollars exactly do - allow someone to come to my home and help my daughter with various therapies to address developmental delays she’ll have. So I’m thankful. 

Three of our county’s employees came yesterday to assess Hannah - basically ask a lot of questions about feeding, movements, etc. They were very happy with how she’s doing. One of the women here will be our personal representative who will work with us for the next three years! I really liked her [thankfully] and she feels easy to talk to. Whew!

These women made me realize how there are wonderful people out there who want to help those in need on a regular basis. Those are the jobs that mean something. Making packaging for Twizzlers and Hersheys seems beets compared to a career where you actually help people, you know? 

I digress; so we have our Early Intervention ball rolling and I’m eager to get Hannah on track to be just as abled as the rest of us!

Wednesday, October 15, 2014

Lactation Consult


6 Weeks

Not being able to breastfeed from the get-go was hard for me. I’m a big believer in immediate nursing after delivery, skin-on-skin time and the benefits of breastfeeding. I went to a lactation consultant with Nora and it worked. Breastfeeding is hard work. It does not always come naturally. I cried a lot with Nora due to breastfeeding, trying to get her to latch, spitting up, gas, etc. But I stuck with it and was happy to last about 8.5 months. 

There’s no way I’d be able to exclusively nurse at this point - Hannah will not get enough food from me, nor her caloric needs to beef up for heart surgery. My goal is to get her good practice to go full steam after heart surgery.

I can’t decide if exclusive pumping is easier or worse. I’ve been pumping every 3 hours for 6 weeks. I have to be near an outlet to plug in. I can’t have Hannah help me out in public, which would be easier. However, pumping is 15 minutes versus a 40 minute nursing session.  

Hannah and I met with a lactation specialist at Children’s today - they already have her history and medical background, so why go anywhere else? 

Believe it or not, Hannah did pretty good for nearly zero experience. They weighed her before and after her nursing attempt and drank 18mL! Her bottle volume is 70mL. It sounds like a little, but I think for never nursing, she did good. I always think it’s neat how medical professionals can weigh a baby after feeding to determine how much they ate.

The lactation specialist consulted with our Cardiology Nutritionalist and they agreed I can attempt to nurse once a day, no more than 10 minutes. Then follow up with a 50-55mL bottle still fortified with formula for calories. 

Hannah is now 6 lbs 6 oz - still not gaining quite enough, so we’ll probably be upping her to 24 kcal/oz. 


9 Year Anniversary

Saturday was a very full day for us, especially as parents of a new 5-week old. 

Saturday AM we left the house magically by a little after 9am to take Hannah to Dottie/Mike’s and then take Nora to Entertrainment Junction in West Chester - a huge train enthusiast entertainment center. Adults and children can enjoy a huge train set, indoor playground, kiddie train rides and this month, a Halloween area complete with No-Scare Haunted House. It was fun and Nora had Tim and I all to herself. 


We had a late lunch at Nana’s house which pushed nap time to the edge - especially since Nora was up at 5:08 that morning due to wetting her bed : (  Tim carried her into the house and Nora flew off a bit and ended up sleeping on her bedroom floor. 


My parents arrived just before 4pm to take the next leg of the day. Nora woke up right around their arrival - which was not a long enough nap. I apologized for her mood - it was BAD. 


Thankfully by the time Tim and I left for our anniversary dinner, my Mom worked her magic and had Nora in a good mood and reading books with her. 


Tim and I were granted a few hours of blissful alone time - the best gift you can give a parent! We went to 20 Brix in Milford, a nicer wine enthusiast bistro. I got my first wine flight - a prosecco, a chardonnay and a pinot noir. The chardonnay was amazing! Much better than the cheap stuff I buy : ) 


I had monkfish for the first time - I was hesitant because if you get a fish you don’t know/like, your dinner will be ruined. It was similar to scallops which I love, and it was delicious. 


After dinner, Tim and I went across the street to MJ’s, another bar/restaurant and enjoyed a drink at the bar. Tim got a beer sampler and I continued with another chardonnay - who am I?? 


We wrapped up quickly because we wanted to take advantage of another big event - going to Target without children!! We’ve been wanting new bedside lamps for a while and tonight was the night! We could take our time looking and converse about our choices. We did so and love the result. 


We walked in our door just before 8pm. Nora heard us and came bounding down the stairs [despite being put down for bed] while my Dad shouts “I need help!” Hannah had leaked all over his jeans. I HAD to pump and Hannah was due for her next bottle. It was comical and exactly what I expected would happen when we got home : ) 


It was the perfect day and to top it all off, I decided I was done wearing pregnancy jeans and managed to find some jeans in the basement that fit my post-baby hips. 


Thank you Moms & Dads for our day!


Mini Maze



Don't mind the terrifying mannequin up there.


Too far past nap time!

My first wine flight!




Friday, October 10, 2014

4 Hours at Children’s

1 Month

Tuesday we had our follow-up with Cardiology and the High Risk Clinic. 12:00 EKG for Hannah, 12;15 follow up with Cardiology, 2:30 follow up the High Risk/Nurse’s Clinic. We’ll totally have time to go down and get lunch in the cafeteria. 

We have to be 15 minutes early to every appointment for sign-in. Which is hilarious because you end up waiting about 15 minutes to even see anyone. I also need 45 minutes to drive down there, park and get to the floor. I also have to pump and feed Hannah. So the 12pm meeting has my timeline starting at about 10:15am. [45 minutes to pump and feed]

Our first appointment went all the way to 2pm!! GAH! Hannah was great, Tim took her to a waiting room to eat. I ran to a lactation room to pump for the FEW minutes we had until next check-in. 

We checked in at 2:15 for our 2:30 appointment. We were both SO hungry and wearing down. We weren't called in until 3:05 - REALLY?! Argh! If we’d known, one of us could have run down for food. 

We didn’t get out until 4pm. I was “hangry” and trying not to be a b*tch to the people seeing us. 

The result of the day:
1. Hannah goes back in 2 weeks to Cardiology. We are adding 1/2 tsp formula to my breast milk because Hannah is not gaining enough weight. This will make the milk 22cal per serving vs 20cal. 
The Cardiologist isn’t fond of Hannah’s rapid breathing - her heart is working too hard, therefore burning too many calories. He’ll most likely put her on diuretics soon to take fluid away from her lungs and help her breathe easier.

2. We do not need to go back to the Nurses’/High Risk Clinic - it’s just overlap and doubling up on efforts, so one less person we need to see. 

Keep on Truckin’ 

Tuesday, October 7, 2014

Small Good Bits

2 Years
1 Month

First, Nora slept in big girl undies last night - woo! As long as we go potty before sleep, she usually does well. I anticipate some wet bedding some mornings, but we’re in the final steps : ) 

Second, after about 2-3 days of straight sleeping, Hannah seemed to really wake up this afternoon - her eyes just seemed to SEE us instead of just looking at us. Her eyes had a different shine today : )


Down syndrome Awareness Month

While most people know October as Breast Cancer Awareness month, it is also Down syndrome Awareness month!

I thought this link was helpful in knowing some Down syndrome facts. One point to note: in the US we use “Down syndrome,” while in the UK and Australia [maybe other countries?] they use the term “Down’s.” The community in the US does not prefer “Down’s” because Dr. Down did not possess the syndrome.

There’s your grammar lesson for the day : )

31 Facts About Down syndrome

Monday, October 6, 2014

Give Me Strength & Patience...

Oh this 2 year old is out for me.

I’m being brave this week and keeping Nora home for 2 days with no one here to help. 

This morning went well; 
5:40am - Pump
6am - Shower
6:30am - Hannah up and bottle
6:45am - Nora up 

We had a decent morning. The main defiance was Nora sticking a dime in her mouth. I gave her too much credit - you know, near-3 year olds should be past putting stuff in their mouth, right? 

I decided to be brave again and attempt groceries with them both. It could the last. I went for the “car” cart and put Nora in the “car” with my phone to just avoid any challenges. Hannah went on top in her carseat which I know isn’t super. 

We did great - I always kept a hand on Hannah and we made our way through fine, I got everything I needed. We went to the car in the drizzle and Nora stayed with me and stayed by the cart as I got Hannah in. As I went to put her in, the little shit ran. I’m glad I’m athletic enough to sprint after her. I grabbed her arm and held her tight, telling her firmly why what she did was wrong. I buckled her in and started crying. Which scared her enough to cry and really realize she had done something wrong. Ugh. 

I had a lunchtime feeding for Hannah and again, I’d given Nora my phone to occupy her while I focused on Hannah. Nora’s is smart. She knew I wasn’t mobile and I had to give all my attention to her sister. I asked her to put my phone on the couch… get it off the floor. So instead she takes her tricycle and rode over it a few times. I stopped Hannah’s bottle and grabbed that tricycle off fast. Again, my own fault for giving her the credit. She’s smart. 

This is the biggest lesson in patience and strength… Perhaps more than the NICU!

For real.


Friday, October 3, 2014

Shaw Farms - 2014

2 Years, 9 Months

Our second year going to Shaw Farms, just down the road from us - except on this weekend it was over 80˚ - ack. Nora had loads of fun again. Tim bopped around with her mostly while I pushed Hannah in the stroller. 

Tim was a sport and rode with Nora on the “train” - probably never again because forcing his legs into that drum caused some bruising - ! 

I got my annual pumpkin butter - so awesome!

Swag!




Hannah is 1 Month Old!

1 Month [!]

Hannah is one month old - whaaaat? I can’t decide if that month went fast or really long… 

Loads of appointments this week:

Wednesday: We had our second Speech Therapy visit - it was kind of a bust b.c Hannah couldn’t wake up to eat. Doh! I had attempted to schedule her bottles that morning which anyone with a newborn knows you can’t schedule feedings at this age. So it was kind of a wasted trip… Hannah is still doing great with feeding though; taking all her bottles, eating quickly, waking up to eat, etc. 

Thursday: 1-month Pediatrician visit. Nothing much here… it’s funny how the Pediatrician is kind of second fiddle to her specialists right now… Though I did ask about her “goopy” eye which is just due to a small tear duct. Very common. 

The Ped was happy with everything he saw. Hannah is now 5 lbs 14 oz [so close to 6 lbs!] and is now 19" long - a whole inch from birth! 

Even though Hannah is already 1 month old, I still want to try to get her nursing - I think it would help everyone out. Being in public and needing to empty my boobs is way easier with her help rather than leaving or finding some way to plug in a machine : P

I tried the boob with her a little bit Thursday and Friday - just 5 minutes so I didn’t overwhelm her. She gave a few sucks, not much, but it’s a start. Just gonna keep at it for a bit at home, then maybe pull out the big guns with a lactation consultant. 

Friday: Follow-up with her G.I. surgeon to check her status and the G-tube. It was way more casual than we expected. He looked at her incision [super clean and smooth]. He told us she’s not gaining as much weight as he’d like. Since leaving the NICU, she’s gained 12 grams a day - he wants her gaining 20 grams a day - ! Again, bulk up for open heart surgery. He told us to up her bottles another 10 mL. She’s doing okay with that so far. 

Another bit of a step is that in another month she’ll have her g-tube switched out for a button model. We can’t wait for this step! It will make cuddling, holding, feeding and tummy time so much easier. The button is flush with her skin instead of a cumbersome, awkward tube. 

Next up: Tuesday we meet with the cardiologists and Nurse’s Clinic - basically everyone who took care of her in NICU to follow up on how she’s doing. 

Onward Hannah!








Thursday, October 2, 2014

Running = Happy

1 Month

Had my 4 week OB follow-up this AM. Thankfully I’m healed up well. I was worried because being the busy-body I am, being sedentary is not in my genetics. Last Friday I did some online yoga and I went a little harder than I should have and bled a few days. It’s totally gone and my OB said nothing was wrong down there… just read my body.

I’m sure my body has mile memory - it did with Nora. I’ll be curious to see how quickly I get to 3 or 6 miles.

The super challenge will be running with TWO children on TWO schedules. I hope Hannah gets to some loose schedule by 2 months old - just so the family can get into some kind of groove. I’m sure by the time I get back to work she’ll be there.

I’m not sure if weeknight runs will be a reality anymore… I guess we’ll see. It might have to be at like 8pm : P  Tons of other Moms figure this out, we will too!