The ICU Rollercoaster Continues

I remember hearing once that being in the ICU with your child is like being on a rollercoaster-they weren’t kidding.  

We had made it through the first day of Adeline’s official Influenza A diagnosis which I thought was rough.  The next day, the rollercoaster just continued to progress and get worse.

Adeline was one month old on this day, and she was going to celebrate in her own way.

Overnight, Adeline continued to decline.  The doctors were not happy with where her saturation numbers were, and her blood work didn’t look great either.  They were hoping that Adeline would soon hit her plateaued and things would start to get better.  But, as the day continued, they were losing hope and were talking about next steps.

Then, the next steps…I was not ready for it.  

The rollercoaster continues…

ECMO

The doctors came and talked to Jeremy and me about ECMO, a portable heart and lung bypass machine. ECMO stands for Extracorporeal Membrane Oxygenation and is essentially a type of life support.  The ECMO machine would give Adeline’s heart and lungs a break it needed to heal, but all I could think about was “life support.” 

Me, with no medical knowledge:

Life Support = Someone is clearly going to die.  We are just keeping them alive long enough to say goodbye. 

Little did I know at the time, that Mayo has a state of the art ECMO program.  They have had patients on ECMO longer than most facilities and do amazing things with it.  Adeline would be in good hands.

But, to a panicking parent (ME!), who just thought they were going to be here for a week, it kinda freaks them out…

The doctors talked just a little about ECMO and gave us a pamphlet to read.  The pamphlet talked about all the things we could expect, the risks, and the benefits.

DEATH. That was pretty much all I could get out of the pamphlet, although it contained much more meaningful information. 

I could hardly read the darn thing through my tears.  My baby was going to die; I just knew it.  Worse part yet, she was going to die from something completely unrelated to the heart!  How could this happen?  My baby was equivalent to perfect when I brought her here, and now, we are talking about life support!!!

The Day Continued 

The doctors continued to do lab tests on Adeline all day.  They had to monitor her closely so they didn’t back themselves into a corner and have a bigger emergency.  

Since these blood tests were being done so often, I would hear the doctors and nurses discussing the numbers and decided I need to get an education too.  Clearly, we weren’t going home anytime soon, and if I was going to continue to be on this rollercoaster, I needed to understand it better.

When the nurse got the next set of blood tests, I had the nurse start explaining the numbers to me.  Even thought I was not understanding everything he was trying to teach me, I at least started picking up what was good and what was bad.  I started watching a few of the numbers closely.  It was nice since the blood tests would also show up on my Mayo Clinic App so I could process them more slowly.  

After such an emotional day, wouldn’t you know it, her numbers were starting to look better by the end of the day!  Now, these were not stellar numbers, but, an improvement.  They were looking well enough that we thought that Adeline was on the up-and-up and she had broken through her plateau.   

Clearly, the doctors just needed to talk to us about ECMO, Adeline had heard it and it had scared her straight.    Things could only go up from here.

Ileostomy

Another reason things were looking up was Adeline had her first bowl movement through her ileostomy.  Her body was starting to wake up and function like it should.  Anyone who has ever had a major surgery knows the excitement of the first bowel movement!  

Since the bowel was waking up it was time to have an ostomy nurse come by to show everyone what we would have to do with the stoma and stool.  Prior to the bowl movement, we just kept gauze there to catch all the “flow” coming out, which was almost nothing.  Adeline was on a diet of lipids and TPN, which is IV nutrition.  

The ostomy nurse came by with all her baby ostomy supplies: an ostomy pouch/bag, putty, ostomy wafer and the starter kit.  I watched a little as the ostomy nurse explained to the nurses what had to be done. 

I was horrified.  

My poor little girl!  

How am I supposed to do this? 

Luckily, they said in six weeks they would be able to reattach Adeline.  

So, I won’t have to do this, at least for long.  

But I continued to watch on as much as I could.   Again, there was a reason I hadn’t gone into the medical field.  

Adeline got her ostomy bag!

Reflection 

I still remember sitting in the room staring out the window after they gave us the ECMO pamphlet. This really was a rollercoaster ride, one I wanted to get off.  I could hardly pull myself together, but I wanted to look as cool as a cucumber.  

I couldn’t get past the feeling of how we got here.  

How could this be happening? 

No one should have to go through this, yet other people are dealt more difficult situations all the time. 

Why couldn’t I just be more thankful that they hadn’t told us to call our families?  

They hadn’t given up hope yet, so why am I?

It was just so darn hard.  Nothing anyone says can make it better, either.  They try, as would I if I was them.  But it is just so damn hard, and you do not get it until you are in the situation.

Luckily, as the day ticked by, we felt more hopeful.  Maybe, Adeline was just scaring us to remind us she was still in charge.  

I was holding on to that hope, I couldn’t handle the ICU rollercoaster anymore.

~Jessi

To see Adeline’s journey from the beginning, start here.

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