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 : ) 

Our FOURTH Surgery Date:

Next Thursday, April 30th. 

Our surgeon had 3 babies in the hospital who needed more immediate care. I knew it was could be a couple days before they got back to us.

It’s so hard to not yell at the person delivering me this info. 

Aren’t we at the top of the list by now?!
We’ve had the green light since January!
My baby is starting to sweat by the end of the day!
Do you know how much arranging we have to do for childcare and employers??

I’m sure they deal with emotional parents on a daily basis and if I even tried pleading my case they’d throw me in MY place about babies who are on support machines. Then I’d feel like an a-hole. 

My sister told me a story about someone who had seen babies prepped for surgery and it was cancelled for an emergency. Ack! That would probably throw me into an anxiety attack/emotional breakdown. 

So again, I’m hoping the powers above show us some grace and relief to get us over the finish line...

Hannah's Been Bumped

About 1:15 today we got a call that an emergency case has bumped Hannah. 

I’m pretty emotionally done for the day. I’m not entirely surprised... that’s why I hesitate to even tell people. 

I’m tired of being in quarantine, I’m tired of being afraid of germs, I’m tired of living “on hold” until we get past this. Trying to keep perspective and think of the family on the other side of this. 

We should get a new date tomorrow. He said maybe this week, but we’re already convinced it’ll be next week. 

One More...

Just one more photo to show my love of infant blood draws. This is Hannah and I waiting for the ultrasound team to come find her veins : P

Monday is [should be] the Day

We were called on Tuesday and told Hannah’s repair needed to be bumped up one day - Monday at 10am. 

*I will interrupt here to say we could still be bumped as late as Monday AM from newborn emergencies or heart transplants. I’m trying to be sensitive to those other possible cases, but if we’re bumped I will lose my shit. Pardon the curse.

Surgery hadn’t been on my mind because it was all “next week.” This pushed all her pre-op consults to today: bloodwork at 9am followed by a chest x-ray, then an abbreviated physical exam and EKG. 

As I’ve posted before, bloodwork for an infant is the worst. The tiny tourniquet makes her just livid. They tried both inner arms AND her foot with two different specialists, then called in the ultrasound team to finally find a vein in her arm. I had to pass Hannah off to Tim for the final jab because my nerves were shot. The poor girl was exhausted and sweaty. 

Daddy trying to calm Hannah while the ultrasound team does their thing and another extra looks on. : P

The easiest part of our day was the chest x-ray. Check.

After eating lunch in the cafeteria, we had a final physical, EKG and check in with the nurses and anesthesiologist. All of this was easy and breezy until the nurses said they had a call from Testing that one of Hannah’s samples coagulated and they needed another blood draw. :: smoke from my ears :: Eventually the ultrasound tech came and realized to make things easier she would just prick her finger - it still sucked because she wailed - but it was my easier and quicker. 

We finally left around 1:45 and Hannah passed out in the car from exhaustion and nap-deprevation. Tim and I nearly stopped for a beer, but instead got ourselves some iced Starbucks to ease up. 

One of three bandages

7 Months

Hannah is already about 7 1/2 months old, so these are a touch late, but insanely cute [Grandmas, I’ll get you prints if you’d like]:

Edit: LESS Than One Week

7 Months

Change of plans in a good way: I received a call from our surgeon’s nurse late this afternoon; he needs to accommodate a baby on Tuesday [our original date] and we’ve been asked to move UP to Monday. This is a good thing. 

It also puts us into gear this week instead of being out of my head until next week. This means Friday we’ll be at Children’s for 9am bloodwork, then a chest x-ray, and finally an EKG. Bloodwork is always fun [sarcasm]. 

We also are starting an antibacterial bath every other day until surgery. The night before surgery she gets the bath, must be dried with a clean towel, clean jimmies on, and sleep on fresh linens. She gets another bath the morning OF surgery and another fresh set of clothes. 

I’m not looking forward to the pre-surgery fast... I’m sure we’ll at least be able to give her some Pedialite as her last “meal.”

So... keep fingers crossed this Crazy Train continues down the track. I assume there’s still a chance some emergency could bump us... 

Thanks for prayers, thoughts and positive vibes!

6 Month Photo

One Week ...

7 Months

One week; in one week we could be sitting in the Children’s Hospital waiting room... Honestly I’m still not even thinking about it because I won’t believe it’s happening until we are driving to Children’s next Tuesday morning. 

I imagine we could be bumped as late as the day before if an emergency heart baby changes our scheduled date. 

Hannah and Nora are doing very well... they’re enjoying their time between grandmothers last week and this week... 

Quarantine

7 Months

I pulled the plug on any Easter plans - I became nervous and felt three weeks out was too close based on the last surgery date and cold. Too many people, too many germs. 

While it was a bummer not seeing family, they all understood - we’re all trying to get across this finish line. 

The good thing about quarantining your family; you get a lot done at home! Easter Sunday, both Tim and I ran, we cleaned out the garage and Ailo got a bath! 

Hannah has a tiny cough right now, but we’ve only noticed it a few times in an entire day - hoping it’s just reflux - related. If it is a cold, heaven help me...

Touching her toes at the sitter’s!

Enjoying her Easter card from Nana.

It took 6 months before we got big, intentional smiles!

SISTERS!

Fresh air on Easter.

Milestone Alert!

7 Months old and Hannah rolled over on her own today; front to back! Tim and I were so excited we scared Hannah and she got upset and cried : ) 

I know most infants her age have long rolled over and are probably sitting now, but I try to ignore all this and focus on what Hannah is achieving. So proud of her! 

Of course, she didn’t do it again because I know it took a lot out of her to work that hard. 

Keep it up baby girl!

World Ds Day: Race Day Part 2

Thankfully the Cincy Ds 5K started at 10am - now that’s a reasonable time. Especially since at 9am it was about 32˚ - which didn’t account for the windchill.

Ironically enough, Hannah wasn’t even at the Ds 5K because 1 - It was right during her mid-morning bottle and 2 - It was cold. Nana and Papa to the rescue to keep Hannah warm and fed at their house!

My lovely family joined us as well and walked with Nora and her wagon as Tim and I participated in running. It was a nice course with a surprising hill - I know Tim would have done even better if he hadn’t been slightly slowed down by the hernia surgery. I was done in about 27 minutes with and 8:54 pace - WHAT? PR! The cold makes me a rabbit, man. 

After the race, our families and friends went to Cock-n-Bull in Glendale for lunch. Nora enjoyed the trains that ran alongside. I relished the award-winning fish & chips.

It was a lovely day and look forward to doing it every year now!