Friday, May 29, 2015

Nora: The Threenager

It’s amazing how 3 years and [almost] 6 months is so different than just 3 years... The term “threenager” is incredibly accurate for her vocabulary and behavior. And I think most Moms would agree with me - age 2 was easy. Age 3? Hang on tight.

The tantrums are receding a bit... they’ll rear their ugly head now and then, usually because TV or phone time is over. We’re weak and we need to get the dishes done, what can I say?

Our family is amazed at her language, vocabulary, and communication:

“So are you thinking what I’m thinking?”
“Mommy, I made an innovation.” What word did you just use??

Nora hates being woken up on weekdays [who doesn’t] - “Leave me alone!” 

She does not like when my hair is in a ponytail. Huh? 

I saw a mini version of myself this past week at bedtime. Instead of reading books, Nora decided she was going to take all her clothes out of her two drawers and re-fold everything - !! Um, Hi, Little Christine. I just laid on her bed and watched her for a good 10-15 minutes while she quietly focused on folding and rolling all her clothes back into her drawers. 

Nora is a lot of what I didn’t expect my daughter to be; theatrical, super social, and overly gender-specific; i.e. loves pink and purple and princesses. Uck. But as parents know, we love our children no matter what their current moods and likes are.

My wish is that she loves math and science. Really. The opposite of graphic design. I’m an idealist for my children - I want them to make a difference.

We’ve been filling out her pre-school packet this week. It’s pretty bonkers that we’re at this point. I think it’s interesting that people may not realize pre-school is not a pre-requisite for kindergarten. In fact, the main reason we’re enrolling Nora is for social reasons. She actually knows letters, colors, shapes, etc. I just want her to have a larger social experience beyond the sitter’s house. 

I love watching her grow up and develop a rich personality that is and is not like us. She really is her own little self and man, is it something else - hard to put into words, really. 



*Edit - Tim confirmed my comparison of Nora to Mary Katherine Gallagher - a Molly Shannon character from SNL. This is how I sum up Nora.

A bit like Nora's personality

Wednesday, May 27, 2015

Show and Tell

Just wanted to share a great video and article I saw today - seeing how Hannah could grow up with all these role models. It feels familiar to see women with small babies with Ds as well. The mother of Logan also wrote a great article. A quote that didn’t make her article:

“People with Down syndrome are just that. They’re people first. Down syndrome is a trait they have. Much like a person has blonde hair. It’s part of him. But it does not define him.”

Anyone else catch the lovely young girl whose name is also Hannah? : ) 

People With Down syndrome Speak Out

Stop and Smell the Roses

Saturday, May 23, 2015

3 Weeks Ago...

I can’t believe we’ve over 3 weeks past Hannah’s surgery.

Waiting felt like a lifetime. Then she was repaired, out, home, and now even that feels like quite a while back!

We had Hannah’s two week follow-up this week. She had a chest x-ray which she hates; I think due to the cold, hard surface and me having to restrain her arms : (  I got anxious from her crying since instructions were to not let her go too long as to overstress her heart - !

She had an EKG which is easy peasy. And thankfully the echocardiogram was cancelled since she just had that annoyingly full one just before discharge. 

Her cardiologist said she’s looking great - yay! Hannah came off her Lasix [which took fluid away from her heart/lungs] and will continue her Epaned [her one chamber still has a bit high pressure] until her next appointment in two months. At that appointment, she’ll also have a sedated echo [boo] to get a really good look one more time.

Dr. Kimball also let us know that we can let Hannah cry at night as long as we feel fit - she’ll be fine. Whew! So now we won’t jump every time Hannah cries and she can re-learn to soothe herself! 

Hannah also had a Help Me Grow appointment this week. The physical therapist said Hannah is doing fantastic despite the surgery setback. She’s already trying to roll onto her tummy [no-no for 4 more weeks] and wants to sit up... My goal for her is to sit on her own by 1-year old. We’re gonna work hard!

Loves Mama’s hair and earrings!



Friday, May 15, 2015

One Year Ago...

One year ago today [I think it was a Friday] I left a Level 2 ultrasound sobbing. Our baby girl had a list of “abnormalities” that included possible Down syndrome. Tim and I thought our lives were over, we’d go broke, and one of us would have to quit our jobs to help our baby girl. 

The rug was pulled out from underneath us and our expectations were shattered. I didn’t understand why it happened to us: I ate right, exercised, and was so healthy. I saw our neighbor smoking at 8 months pregnant and it made my head explode. 

Fast forward one year and two surgeries later and guess what - none of that happened. In fact, life is “normal!” Our daughter - who happens to have Ds/and is not a “Downs baby” - babbles, grabs my hair, her feet, chews her hands, and is really, really happy. 

The past year has been incredibly trying - difficult, but not impossible. We still spend a lot of time at Children’s and I see so many children who have a very rough time - particularly in the children who are dealing with cancer, etc. It will always give you perspective.

To you or anyone you know who may have a similar journey - Ds is not a handcuff or shackle. Hannah has opened our eyes to acceptance, patience, and has given us new perspective. She is our little warrior full of sunshine.


We are all more alike than different. 



Thursday, May 14, 2015

Tuesday, May 12, 2015

RELIEF

8 Months

Tim and I feel so much lighter. After a winter and spring of hiding to keep everyone healthy and feeling such anxiety keeping Hannah healthy and getting her through her repair, the sun it out, the trees are full, and we have flowers lifting our moods even higher. Such a weight is lifted from our shoulders that we have moved past this huge life hurdle - open heart surgery on our 8-month old! 

My week home with Hannah was lovely. I forgot how free it is to be home with a non-mobile child on a weekday! I actually shopped. For myself! We bought flowers for the house. I treated myself multiple times to Starbucks iced lattes. 




Hannah has been doing well; Children’s adjusted her reflux meds so the Prevacid actually WORKS now. She’s on Lasix to take fluid away from her heart and Epaned to control her blood pressure. Also Tylenol to control any remaining pain. The only pain we’ve noticed is when she has hiccups! 

We cannot lift her under the arms or strain her shoulder too far back or forward for 8 weeks post surgery. We can gently hold her chest, so I cup my hand around her incision. We still practice her sitting in our laps - her core strength is getting better! My goal for her is to be sitting unassisted by 1 year old. 

Our endearing nickname for Hannah is “Hannah 2.0.” She has more energy which is great... until bedtime. Someone now has the energy to cry when she has to lay down. DOH! We’ve gone 8 months with a sleepy baby who you could lay down and walk away from. Now she protests! AND 1/2 hour after she falls asleep, she cries! AND she cries in the middle of the night now! [Yes, she’s still on Tylenol] All this energy is making someone a stinker now. Ack! And we “have” to pick her up because our instructions for home were not to let her cry too long so as to not overstress her heart during recovery - ! So now she thinks she’ll always be picked up if she cries - don’t get used to it, Sister! This Momma believes in letting babies soothe themselves!

8 months old!


I’m going to bring up the new crying to her Cardiologist because some Mothers in this situation wonder if the new crying is due to the side effects of Lasix : P

This past Saturday we went over to the Krons and Amy & the Boys were there too - even that small visit felt new and refreshing to get OUT. I hadn’t seen the Kieffers since Christmas [I still have yet to see Chris!]!! 




Mother’s Day was awesome. Two years ago I was cleansing for a Monday colonoscopy. Last year I was pregnant and actually had a feeling something wasn’t going to be the same with our baby... 

The girls “bought” me a Mitchell’s gift card, some flowers for outside and a lovely handmade card. We went to the park where I attempted to run with Hannah in the jogger - hard! Then we hit Lowes and Kroger [both crazy]. I was able to spend time outside with Nora - I sat and drank a Corona while she played in the water table. Age 3 is pretty good about not running off and having to chase : )

We grilled out. Hannah was a tired mess and grumpy all night. Though Tim and I ended our day with drinks on the deck overlooking our tree-filled yard - Cheers to moving on!



Tuesday, May 5, 2015

On Running

I’ve run two races “alone” now - arrive by myself, not running with any friends, finished, then scoot on home. It’s not quite as fun but getting little ones to cheer on Mom is just a little too much right now : ) I’m sure in a year or so Nora can come with Daddy at least sit still [maybe] and cheer me on. 
The Pig 10K was nice and fairly short. I found my photo proof and balked; people always joke how their running photos look way worse than they do on a “normal” day - it’s true - haha!



I’m shocked at how “fast” I’ve become - I’m consistently around a 9:45-9:35 mile and it feels great! I think prior to getting pregnant I was hovering around a 10-minute mile. 

I’m already signed up for the Queen Bee Half in early October - I’ll have to really strategize to get 3 runs in a week! 



That Other Kid We Have...

After a month in quarantine, Nora finally got some major socializing while Tim and I were with Hannah. 

Nora spent two days and nights with our close friends [and Nora’s BFF, Ava]. I don’t think Nora missed us one bit : ) Friday she spent with Nana and Papa, then Saturday morning saw her cousin, Gabe, play his soccer game. 

And lo and behold, after being released from quarantine, Nora now has an epic cold full of snot and congestion : (  Hopefully her immune system will ramp back up - ack. Tim and I are a little - okay, a lot - nervous about bringing Hannah back with Nora. That’s how Hannah received her last cold! The staff here says to just play it smart, so we’re going to do our best to keep Nora away - ack!

*Update - Nora woke up this morning seeming better... Last night she screamed bloody murder when I tried to put some Aquaphor on her upper lip/nose - poor thing. I stealthily went in her room at 10pm and put lotion on her lip/nose and she felt better today! 

Minutes after I dropped off Nora...

Ava & Nora being themselves : )

This lasted 5 minutes with Nana & Papa

Nora asked Papa to carry her bike - he said “No.” Haha!


So much fun!






Monday, May 4, 2015

Recovery Day 4...

Oh wait - we’re home. 

WHAT?

I know. Insane - not even 4 days post-op. I knew Hannah was strong, but my gosh!

We learned how to hold Hannah and clean her wound, and bam - out of the hospital before 11:30. 

Here is Hannah while Mommy & Daddy enjoy some Mexican food and a beer!

Cheers to moving on and our little warrior!


Recovery Day 3 [Sunday]

Well sleep was about what I expected - ? I got about 3 chunks of sleep. The longest was probably 12am-3:30am. Sigh. The pull out loveseat wasn’t awful - glad I brought my own pillow. 

I was pumped, dressed and getting coffee and a bagel before 7am. The weekends here are a ghost town. Lonely, really. I think I prefer the bustle. 

Hannah woke up with all smiles. We had a nice morning and I was going to leave at 9:30 when at 9:25 came an older woman to sweep us in a wheelchair to get an x-ray - Doh! They *were* quick and Hannah screamed of course. 

I was almost to the garage when I forgot my keys in Hannah’s room. Then I balked at which direction to head home. I should have taken 71 N through Maderia and Indian Hill. Instead I headed south into Flying Pig traffic nightmare. 471 South? Nope. Columbia Parkway? You wish. I headed up 75N over to 71 and through my neighborhoods. But of course, Madeira’s main drag was shut down for an art fair. Are you flipping kidding me? 

I spent my afternoon with Nora, however, now that she’s out of her month-long quarantine, she now had an epic cold; congestion, snot, blah. So she was a big cranky mess for me. No fun after 3 days of not seeing her! 

And in the middle of my attempts to soothe the big one, Tim called to let me know the words “discharge” are happening with Hannah already. 


So I’m back at the hospital tonight since it looks like it could be our last night here - ! Shhh no jinxy.


Saturday, May 2, 2015

Recovery Day 2

8 Months

A lot can happen in a day! Especially when your baby is a Superstar®.


I had a great night sleep [sorry Tim] at home and ran the Flying Pig 10K this morning - not too bad, I think lack of proper meals and hydration made me feel a little slow. Although I ran it in 1:00:58 at a 9:37 pace so I’m happy. 


My plan was to pick up Tim and head home to shower, however he said I may want to swing by because she could be moved to a regular room - ! Good thing I brought my badge just in case! 


As soon as I got there, they were removing her heart drainage tubes. Ack - I tried to soothe her from the top so I didn’t have to see what was happening - basically they pulled out these tubes that were going through her chest into the cavities around her heart to collect any extra fluids. It was crazy. 


Once she was settled, Tim and I headed home where I showered and came right back. Tim mowed and was picking up Nora. 


I got back and what were they doing next? Removing her IJ tube - you know, the IV from her neck? So she was a hot mess again. I seemed to be hitting all the goodies today. So at this point she only had her hand and foot IVs and sensors on! 


I was able to finally hold her and she fell asleep in my arms : ) Anyone who has had a child in the hospital knows they never get to sleep because so many people come and go and poke and prod : (


Around 2:30 we were moved to our in-patient room! It’s pretty nice - new large tv, bathroom with a shower, pullout twin for me tonight. 


Tim and Nora visited and I was SO happy to see Nora after almost 4 days - ! She was so good and seemed so old. Of course during the family visit was the poorly timed echocardiogram. It took probably one hour and Hannah hated it - I spent the entire time trying to soothe her. I was getting pretty grumpy plus I was hungry, so we were both agitated. Tim and Nora had left by this time since our visit was ruined. The technician left at 4:20 and said he’d be back after they’d looked at the photos and see if they needed more - !! I hung around a bit because Hannah was still pissed. She fell asleep around 5:20 and the guy had STILL not returned. 


I ate dinner downstairs. Children’s is so empty on the weekends. I was lonely. I like the bustling a little bit more. 


Having a newborn in the NICU is slightly easier because they sleep SO much. When your baby is 8 months old it’s harder because she’s awake longer and knows your face... I’ve only been here since 12:30 and I’m worn out [it’s 8:12 currently]. I miss our home routine of a 7pm bedtime and my relaxing time! Soon enough, right? 



Two days post-op!




Friday, May 1, 2015

Recovery Day 1



It’s been an interesting day - it ’s amazing seeing Hannah’s change from just this morning to this afternoon. This morning she was awake from about 5:30am - 11:45am - poor baby was just restless and wiggly and half asleep.

After finally sleeping about 3.5 hours, she woke up calmer and more alert. Her breathing is already more regular which is so nice to see. With less work on her heart, she’ll burn less calories. Therefore I think we can stop adding formula to my milk and we can see how she does with weight gain with just milk or just formula. 

We noticed Hannah was making a lot of sucking sounds [when she wasn’t blowing raspberries]. We got a pacifier and she started going after it! A speech and occupational therapist swung by later and after some experimenting with the pacifier and syringe of milk, we tried about 10mL of milk in a bottle and she drank it! Not smoothly, but the coordination came back and they were very impressed. Amazing isn’t it??

She had her forehead monitor removed [just a sticker], her catheter removed, and 4 of the 6 [!!] IJ lines removed [intravenous jugular - yup, meds going into her neck. It’s awful and we can’t wait for that line to come out]. I wasn’t there for the neck dressing to be changed, but Tim said Hannah was MAD. Poor baby. 

I think her lines are:
- oxygen
- 2 hand IVs [blood pressure meds and a diuretic] 
- foot IV [I think as backup]
- sticker sensors on her chest 
- toe sensor
- IJ line [pain meds]
- drainage lines from her heart
- arrhythmia wires [in case her heart goes into arrhythmia, they can correct it] 

I came home this evening because I’m running the Flying Pig 10K tomorrow at 8:30am. Hannah is well and it’s fine for me to get out and run - run off the dust. Dust that’s been on my shoulders since Hannah’s been born. Tim and I feel a lot lighter. We’re past this rough winter of waiting. I am so excited to get back out and see friends, make plans, and get ON with our lives now!!

PS: It’s really strange being here with just the dog. It’s actually lonely and I’ll probably be a bit nervous going to bed tonight.


Trying to calm the wiggles with a mobile.

Finally sacked out after being awake for about 6 hours.




The Morning After

Happy 8 months Hannah!

Tim attempted to sleep in Hannah’s room which sounded harder than my sleep in the twin bed for parents. The noisy hallway was hard, but I managed sleep from 10pm-4am. 

Hannah is awake today and feisty! She’s been wiggling since about 6:30am - wants to roll and move, doesn’t like being tied down! 

Adorbs in Pre-Op

After some Pediatlite

Arriving post-op

Our room for some days

Parents room - !