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!

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.

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!

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 - ! 

Surgery Update - All Done

Six hours after we passed her off to the O.R., we got the update that they closed her up. We all had a few tears of relief.

Dr. Bryant said it went really well... and that’s about it!

We ate some dinner and around 6:15 we were able to see her - being in the NICU helped us handle all the tubes and wires. There are a lot and it looks intense, but she’s doing well and looks really good.

Tim and I have a parents’ sleeping room tonight - it’s 5-stars guys. Twin bed. Prison sheets. I’ll post a photo eventually. 

I’ve had about 4 1/2 hours of sleep so I’ll sign off ... 

We're In It... [Surgery Update]

First: Hannah is doing well so far. We’re waiting to hear she’s on the bypass machine okay and then they’ll start the actual heart repair. The actual repair takes less time than getting on/off the bypass machine. 

I can’t believe we’re finally sitting in the waiting room.

This morning went by fast yet drug. I woke up at 2:15 and was awake for an hour then my alarm went off at 3:45am. Zzzz. 

We left the house at 5am because we were told [and my paperwork said] bloodwork at 6am. Once we were here and the nurse was going through Pre-Op stats, we learned surgery wasn’t until 10am - !! The head nurse explained they have so many surgeries happening in tandem that if an early one cancels, they can keep the train moving. He explained it better - it made sense. I was still really tired. 

They said they were going to draw her blood once she was in the OR and under anesthesia, but then they changed their minds because that could take too much time and ended up drawing blood. As you all know, our favorite event. Our friend from last week was here again and remembered us! It was an ordeal once again, they swaddled her tight and restrained her a bit while I feebly attempted to soothe her. It was awful and it made me cry seeing her so upset before leaving her. 

The anesthesiologists came to the exam room to take us to the OR a bit after 10am. [We were in that exam room 4 1/2 hours] They were super sweet as we handed Hannah over to them. The reassured me they would take good care of her as I struggled to hold my sobs back. The one anesthesiologist gave me a hug which I really appreciated. 

We’ll be sitting here for a good 5 more hours I’m sure so I’ll update later...

Thank you for all the prayers - Hannah is our strong little warrior! 

Grammer Police

Oh my gosh. I usually pride myself on proper grammar and have caught myself [and in this blog] using the wrong phrase! 

“For all intents and purposes,” not “For all intensive purposes.”

Ack! And you all saw me commit the crime!!

Still Pumping... [and Feeding Updates]

For those who are interested [which are probably three?] I’m still pumping 5X a day. 

Which is kind of a happy accident? I can’t think of the right term; basically my goal was to pump Hannah through heart surgery. I thought I’d be cutting way back by now, but as we all know, surgery still has not happened, so I am not letting up yet. 

I can’t believe I went 3 months waking up twice in the night to pump. Zombie. Then three more months waking up once to pump. Dropping the middle of the night really helped me mentally with everything we have going on with Hannah. 

I still wake up at 5:30 on weekdays to pump before I shower, then just after I get to work at 8:30am, 11:30am, 4pm, and finally at 8:30pm. I think my next adjustment if we ever get Hannah’s heart repaired will be dropping 1 of my 3 pumps at work. Then eventually one at work, then down to mornings and nights. I remember with Nora, we wrapped up nursing with just a morning and bedtime feeding - not having to bring that darn black bag with me was so liberating! 

Did you know I don’t wear dresses at work so that I have “easy access?” Blah! Temporary! 

And you know what? ALL of my pumping amounts to about 15oz a day. Yup. It’s total crap. I’ve always been an under-supplier. I do what I can but I’m not stressing about it. Hannah gets the real stuff and the fake stuff and she’s doing well for what she has going on. I’ve heard some women complain about their supply tanking [to my amounts] and I want to say “Guess what? That’s all some of us even produce!”

I digress - after almost a month of trying pureed foods with Hannah, she seems to be catching on a bit and not blowing as many raspberries. I’ll be curious to see after surgery if she re-learns bottles or we get heavier into solids... I know kids with Ds tend to be on the bottle a bit longer, so we’ll see! My baby is still hitting her milestones, she’s just taking her time : )