Follow-up Echo: Post Heart Repair

Tuesday we had Hannah’s post-surgery sedated echo. This has been I think her 4th echo, 2nd sedated. The morning went very smooth and we were out earlier than we thought - win!

The anesthesia was given through her G-tube and she was asleep under 10 minutes. It was during her nap time, so that probably helped a bit. 

Waiting around 7:30am!

Again, the trippy lights to help kids asleep - !

More trips lights and calming “fishbowl” on TV.

While Hannah was asleep, I asked the sonographer and RN about her chest because its healed up a bit pigeon-chested, sticking out a bit. They both looked at me like I was silly - ! “Oh she looks great! We almost couldn’t tell she’d had a repair. We’ve seen kids heal much worse.” - ! Okay, well that eases my mind a bit. 

EKG while she was still asleep. Those are fast and easy.

You can’t leave the room until you force your child awake - ugh! The nurse SAT Hannah up and was tickling her neck, etc. I realize it’s for safety reasons, but who wants to wake a sleeping baby?? She woke up and acted like a drunk baby. Not kidding - it was funny/weird.

We made our way into an exam room to follow-up with Hannah’s Cardiologist. Nutrition came in first because I’m just not sure about Hannah’s “diet” - All. Formula. We’ve had two more speech therapy appointments with some slight tricks. We’re using puffs, thickened purees, Baby Mum Mums and yogurt melts. Anything and everything. Basically Hannah is pushing everything out with her tongue - she hasn’t learned to push food back and down. Everyone keeps saying “It will click...” It’s been 3 months of practicing. Talk about a lesson in patience for one of life’s most necessary skills : (

I digress - Hannah’s Cardiologist said Hannah’s heart looks great and we can come off her final medicine [blood pressure] next week! Woo - hoo! One less thing! We won’t need to see him again for 6 months - that’s a long time based on Hannah’s history. 

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In more fun Hannah news, she’s crazy rolling now, pushing her butt into the air while on her back and babbling a lot - we’ve got some “Da-Das” - yay! Her core is getting stronger so we’re not sitting yet but we’ll see if we make our 1-year goal : P

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!

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!

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! 

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

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.