Everything is worse without sleep

Yesterday was my best girl’s birthday.

I put on my happy face for her, lavished her with attention (although she was in the throes of the terrible 3s most of the day), and had a great day with her overall.

We put her to bed early – she had had a long weekend.

Craig and I say our prayers with her every night – and tonight wasn’t any different in that respect.

As we let her say what she was thankful for – “Elmo…ummm….Ducky….ummm….Evan…and God,” I started to tear up and looked up and realized Craig was doing so as well.

It was our turn to say what we were thankful for.

Craig and I suddenly broke down – almost at the same time – and took turns hugging our girl.

Both of us just saying over and over again how thankful and blessed we are that she is healthy and that she is here with us and growing and that when we talk about her future we envision first day of school, dating, college, a wedding…

And I knew that we both had the same hopeful prayer in our hearts – to get those same memories, to share that same prayer, with our boy.

Yesterday, was a tough day.

He has had tons of episodes of spitting up and vomiting.  Normal babies – no biggie.

Heart babies – RED ALERT!

Dehydration is a big deal for these babies.  Without adequate hydration, you don’t have enough blood volume…thus not enough blood pumping through the heart…thus not enough oxygen…etc, etc.

What happens when he does this?  If it’s small spit up – just suction his mouth, change his onesie, go on with your day.

On bad spit ups borderline vomiting – pray his feeding tube doesn’t come out, suction his mouth because now his airway may be compromised, change his onesie and possibly bedding.

On super scary spit ups that are vomiting – probably have to replace his tube, suction his mouth because he’s turning blue because yes – his airway is compromised , change his onesie, change my clothes, change bedding…and cry (both of us).

So we’ve been having some super, scary episodes more frequently.

I have to think of different scenarios – reflux meds not enough, volume is too much, he has a virus…or he’s going into heart failure.

Gulp.

Clinically – meaning when you look at him – he looks great.

Chub for days, cooing and squealing like it’s his job (I guess it kind of is…), good color, oxygen in his normal range, breathing is relaxed…all the things I need to look for.

My fear and lack of sleep automatically skip the probable causes – maybe he’s not feeling well, maybe his meds aren’t enough – and automatically think the worst.

I woke up crying this morning fearing our visit to the cardiologist.

I always hope for the best but prepare for the worst.

I couldn’t stop crying on the way there.  Craig, thank God, was able to come with us and I just basically cried the whole time.

It’s a lethal combination of stress, fear, exhaustion….and lucky me…I’ve scored the trifecta.

His visit went well. He is gaining weight like a champ.

Right at 16.5 lbs, oxygen a little lower than last visit but still ok, looked well to the two cardiologist that examined him.

We discussed timing for his surgery and possible next procedure – a cardiac MRI and catheterization to check pressures and anatomy of his heart and blood vessels.

Both procedures will give us an indication of how soon he’ll need a surgery, what kind of surgery – full repair or staged repair, and hoping that a repair is an option which we feel confident it will be.

When we get closer to the dates, I’ll go into more detail about what they look for….basically….there are pressures all over the heart, across valves, in the lungs, etc..and these pressures need to fit in a certain range for them to go into his heart for a repair.

Scary, scary, stuff.

But, what can we do?

Nothing.

So we wait.

We pray.

We pray some more.

He has gained a lot of weight so his doctor increased his reflux meds in hopes of helping the spitting up episodes.

Pray that works because it’s scary…

It was a good visit.

I can’t ask for more from my boy.  He’s doing everything we need him to do…and that’s gain weight and grow.

We are also going to attempt to cut down his feeds from 8 times a day to 7 times a day.

What does that mean???

It means our 2:30 AM feed can be cut out for now if he is able to gain weight on 7 times a day feeding regimen.

Which means Craig and I will be able to stop his last feed at 12:30 AM and don’t have to be up until 4:30 AM for his medication.

Which means when we take turns…we will be able to sleep more than 3-4 hours.

Hallelujah.

So here’s my prayer requests which I haven’t done in a while:

– Pray that his reflux gets under control.

– Pray that with his feeding therapy we are able to get to at least 75-80% bottle feeds so we can rid of the stinkin’ feeding tube!

– Pray that he continues to grow well, gain weight, thrive.

– Pray that if he is need of his surgery that we see subtle signs and not an emergent need.

– Pray that he can tolerate volume increases so we can sustain the 7 times a day regimen so Craig and I can get some rest.

– Pray for peace of mind for Craig and I as we prepare for the possibility of surgery in the next few months.

– Pray for miraculous healing because God can and will heal my boy – even if it’s through the expert hands of his surgeon.

– Pray for all of his heart buddies going through similar battles.

Thank you for your prayers, good thoughts…all of it.

We are truly grateful!

Comments

  1. Praying with you. And crying right along side of you too!!! Love you guys!