Post-op Day Three

We had another hard day today, but Sunley is still doing really well — we have had no real medical “hiccups.” The biggest challenge for us right now is her pain management — seeing Sunley be completely silent (except of course when she’s REALLY hurting) has been so hard. She is just emotionally totally shut down, and I don’t blame her! I have to remind myself constantly that it has only been 3 days since open heart surgery, and the kid still has two of her chest tubes hanging out of her, so of course she isn’t energetic yet! 

We’ve started a 770cc/24 hr fluid restriction, which is typical for Fontan recovery. There was some miscommunication getting there, some on my part and some not, but it was all resolved today, and I was happy to see that we didn’t even get to 770 today. I think we ended at around 700 cc for the day, so Sunley is getting everything she wants, which helps her parents! The rest of her recovery will likely be centered around finding the balance of diuretics and fluid intake, and all of that hinges on her chest tube’s output. Once we get those chest tubes out, we’ve been told recovery usually speeds up big time. We are also hoping that after we remove them, breathing will be less painful, and her saturations will go up.

Last night, Sunley woke up around 4 am in a lot of pain, and due to that pain, she was desatting into the high 80s. This lasted for a few hours, so we did end up bumping her oxygen back up to 1 L. This afternoon, we took it down to .5, but now it’s back up to 1. Her RT came by tonight right before bedtime and said that her breathing does sound a little diminished, and her cough sounds a little worse, X-ray is just a tad hazy, but still no one is super concerned. Walking is the best medicine right now, and we hope that any little issues will be resolved by moving. This isn’t good news to Sunley, but it’s the only way home.

The walks are definitely the hardest thing right now for her. All the pokes, yucky medicine, etc is bad, but Sunley absolutely hates it when we tell her it’s time to get up. She was in so much pain today, but we really had to do a walk, so we waited until 11am because there was a “puppy party” with Bailey the therapy dog in the family room on this floor. At 11, we had Sunley sit up in bed, and it took her about 10 minutes to stand up. I was in the process of ordering Sunley’s lunch, so Derek and our PT worked on moving cords around, getting the pole set up, and getting Sunley ready to move while I was on the phone. I was on hold for about 15 minutes, and during that time, Sunley started desatting (again, just from pain), of course screaming, and then she suddenly cough/puked all over Derek and the PT. I’m sure you can imagine the chaos. I finally just hung up, we got the mess cleaned up, and Sunley fell asleep immediately, just leaning on Derek. After all of that, we realized it was 11:45 (at this point we had been trying to walk for 45 minutes), and so we got the wagon for Sunley to ride to the puppy party. When we got there, Bailey (who was wearing a yellow bow specifically for Sunley) gave Sunley some sweet snuggles and did a couple tricks for her. Sunley was totally shut down, but we invited Bailey to Sunley’s birthday party on Monday, and Adair, the trainer, mentioned that Bailey could wear a unicorn costume. Sunley immediately said, “Oh I love unicorns!” And I almost cried — it was so sweet to hear her happy voice again! That was one of only 2 happy sentences today, but she’s still in there, and I’m sure Sunley will be back to her feisty self soon.

We have had good nurses for this entire admission, and it has made such a big difference for us! They have really had Sunley’s back and put her first, and it is just really wonderful from a parent’s point of view. Sunley has such a big team here, and even the people who aren’t technically part of her squad on paper…they’re still on her team. The visits we’ve had from her past doctors here every day have absolutely filled our spirits, and those visits give us both the boost we need to keep looking ahead.

Day one I will sit in darkness

Until the light of your grace shines through

I will wonder where the light comes from

Until I forever shine with you

Day two I will gaze

At the openness above me

Waiting for it to fold open

Waiting for it to pull me home

Day three, amazed at what my eyes have seen

The beauty of all mysteries

Life about me, gardens abundant

Day four my God what have you done

The swirling lights are beckoning me

To come

Day five I will fly in the skies you have made

I will swim to you until my body gives out

Day six, oh day six

There is breath within me that I can’t explain

I will stay here until you call my name

I won’t rest until the days are up

Until the seventh day

I will work for you

Until the seventh day

I won’t find rest

Worship and Serve

When I can’t sing, I’ll write the word

That praises your name

Its glory tells a story

Mightier than shame

I’ll be silent

Only when You ask me to be

And when he throws stones, I’ll build an altar

Whose reach will be higher than me

Where is my faith? It is unseen, yet walks in front of me, more sure of my steps than my own two feet.

How do I prepare for an unknown future? I look at my unsure feet, find a foundation from the words hidden in my soul, look up, and take another step.

What keeps me from crumbling under the weight of responsibility? Nothing at all. I crumble into the safety of my teammate, the one He has given me, and together we rebuild. We find our faith, shore up our feet, and continue to move.

When in doubt, I will serve. When I grieve, I will serve. When I feel betrayed, I will serve. When I’m tempted to trust my feelings more than the truth, I will serve. When I’m serving alone, I will still serve.

There is nothing else to be done.

Grief and Re-grief and Pre-grief and Peace

I am not afraid to allow myself to grieve, and I hope you are not opposed to my sharing of it. It’s been so long since we were “normal,” that the process of re-grieving has gotten so much easier, and has become a quicker cycle. But it does still feel like hitting a brick wall. I still struggle with feelings of guilt for grieving anything at all, but I don’t fight the harder times as much as I used to fight them — I have learned to embrace the tougher parts of life because God has consistently kept His promises to bring His goodness into them. What a happy thing to happen to someone — to be taught how to rejoice in trials (James 1). I can’t completely let go of my human preferences to keep things rosy, but I am also not afraid of the many different things that could be taken from any of us at any given time.

All that to say, when I can’t sleep because I’m walking through West Tower at TCH, switching elevators at floor 3 to get to floor 4 where my sweet one sleeps in NICU4 because the CICU is full, I don’t try and force myself to fall back asleep. I get up, I pray, I write, and I worship. The Lord and I sit together and remember the days that were hard, and I thank Him for the beautiful days He has mixed in. I remember how I felt Him so clearly walking the halls with me, and I remember all the signs He sent, and I wonder which ones I missed. He fills the hard memories with a fondness that only the distance of time can bring, He brings me peace, and I fall asleep until His sunshine (or my sunshine) wakes me up. All four of my babies are still here. He has let us keep them all. That great mercy is not lost on me.

And the next time a wave of grief hits me, He will be ready. He is always ready.

When I’m dead and gone, my bones will still know the path to your door

Down elevators, past white coats, and through the corridors

My bones still will glow from the memory of holding you down

Radioactive memories, whose poison didn’t make a sound

When I’m dead and gone, those moments will be farther underground

My bones will still remember how I etched your body’s warmth in my mind

Or memorized its heaviness for one last time

A mother’s bones do not forget how to find the one she needs

No matter how old they get, the worst of memories they still see