Post-Op

by Anonymous 10:42 PM 3 comments

First off, praise the Lord for what he has done and continues to do in Juliet's life and in ours.  She genuinely is a little miracle baby.

Now for a few administrative items:  First off, apologies for the ongoing site construction.  I’ve never really blogged before and I’m still trying to figure out how to get the look and the navigability that I’d like. 

Second, I want to apologize to anyone who we have fallen behind in thanking, returning calls and texts, etc.  Things are happening rapidly up here, and there is often a doctor, nurse, surgeon, respiratory tech, nutrition tech, x-ray tech, or any of the other helpful and crucial members of the Shands staff stopping by to talk to us.  We get sidetracked easily anyway, and in our state of exhaustion we hard pressed to remember even to eat.  We’re not ignoring you.  We don’t take anything any of you have done for us for granted.  We love you all and we are extremely appreciative.  Our heads are just spinning around like Beetlejuice most of the time (I hate it when that happens).

Now on to the main attraction….

Our little gladiator has taken on every challenge she’s faced in her short three and a half weeks, and she has heroically risen to the occasion.  After handling neurosurgery at 24 hours old, battling through ups and downs with her head and her respiration, and ultimately readying for battle with her congenital heart defect, she has taken that on stalwartly as well.  Our first time to see Juliet post-op, was one of the most shockingly pitiful things I’ve ever seen.  I thought that she’d had innumerable tubes and probes after her birth, but somehow they found a way to cram even more inside her tiny body this time.

We have the utmost confidence in Dr. Bleiweis, and he assured us that she had done very well and exhibited excellent heart function after the surgery.  For the surgery, Juliet required a breathing tube to be reinserted and the assistance of the ventilator again.  The road back to self-sufficiency might not be an easy one, but we were encouraged by how well she’d done off the vent in the NICU.  We are grateful to each of our nurses, doctors, and respiratory staff that all held out faith in Juliet and gave her the opportunity to try again after failing initially.

We knew that the tube was a necessary part of the procedure, but still it was dismaying to start back at square one, so to speak. 

**BREAKING NEWS** What began as a celebratory occasion just turned harrowing and potentially calamitous.  Jordan was given her first opportunity to hold the baby since her surgery.  We were delighted that Juliet had come so far in such a short time and had shed enough of her hardware to permit for handling.  From the first time she was held, Juliet has proved to be happiest when cuddled.  This time was no exception.  Her numbers immediately settled to even more comfortable levels, with her heart and respiratory rates relaxing and oxygen saturation pegging at 100%.  I love seeing the two of them together like this.  There is just something about that mother/baby bond that I find unbelievably heartwarming. 

As I stood over them doting and snapping pictures with my phone, my bliss was shattered when Juliet began to choke and gag.  I had no idea what was going on at first.  It was honestly one of those traumatic experiences where everything seems to be going in slow motion and fast-forward all at the same time.  Jordan was frantically trying to tell me and her mom what was going on.  She had fluid coming from her cannula and it was going directly into her nostrils.  I looked at the machinery on the wall and tried to figure out what I could do to stop it.  There was no time to trace the line through the octopus' garden of cords, cables, and hoses.   Finally, I realized that I had to remove the life-supporting tubes from her nose.  I reached for the cannula to pull it out, but I was too late. 

My unbelievable daughter, who may never walk or talk, knew exactly what to do and reached her petite, but mighty, little hand up and ripped the offending tube from her face, taking her trans-pyloric feeding tube with it.  Water continued to shoot out of the end of the cannula.  Jordan was soaked, the floor was soaked.  We were all drenched in our own perspiration.

By this point, our nurse and the respiratory tech had made it into the room, and they too were trying to decipher just what had transpired.  Apparently the machine which uses fluid to provide moisture to the delivered air, had malfunctioned, sending steady streams of liquid directly up our infant daughter’s nose.

Jordan put it better than I in the subsequent conference with the nurse, respiratory tech, and the attending practitioner when she said, “…in three weeks of life, to survive brain surgery and open heart surgery, only to be drowned in your hospital room by faulty equipment…”  We were dumbstruck.  As I mentioned, we had discussions with everyone on staff, and we were assured that measures would be taken and the incident elevated to the appropriate levels, but how could we ever be comfortable again?

It’s flat-out crazy that I was in the middle of typing an update to tell you all how wonderfully things were going, when in an instant, we quite possibly could have faced the worst of outcomes.

To pick up where I left off, Juliet did admirably on the ventilator and was quickly weaned.  So, they put her on the CPAP, and again she did swimmingly as they weaned her support.  Next came the high-flow cannula, and she was exceeding expectations until the aforementioned incident.  One small silver lining: while it took a few minutes to get things in order afterward, Juliet was literally on no support whatsoever and she did perfectly fine.  Because of that, the doctors decided she could handle a regular flow cannula.  She continued to thrive, and it is possible that she may get to breathe entirely on her own tomorrow.  What an incredible little girl we have.

Well, this post didn’t go as planned, but really nothing in our lives the past few years has.  I actually had a few light-hearted updates to share, but I'll continue to save those.  We are exceptionally grateful that our sweet little one is doing so well.  We know that it is in no small part due to the fantastic team we have around us at Shands and to the remarkable team of friends, family, and strangers that are keeping Juliet and us in your thoughts and prayers.