Triumphs and Trials

by Jordan and Brad 2:44 PM 4 comments

My lovely wife is busy adoring our sweet little tenacious warrior right now, so I’m going to provide another update.  This one comes from a much different place than the last, and I’m happy to be able to say that.  We are physically and emotionally exhausted, but we have much to be grateful for and much cause to rejoice.

First, praise God for all that he has done and continues to do in Juliet’s life and in ours.  In a close second place, we have to give abundant thanks to our team of doctors, nurses, social worker, chaplain, and other support here at Shands Children’s in Gainesville.  They have been nothing short of remarkable.  

One of the most frustrating things for a parent of a child in this kind of situation, especially when your child is an infant, is the feeling of helplessness.  There’s nothing that we wouldn’t do for any of our kids, and Juliet is certainly no exception, but unfortunately there’s nothing you can do.  Immediately after Juliet’s birth was a particularly difficult time for me, because I was trying to help two people convalesce from traumatic situations.  As we mentioned, Jordan’s c-section was not exactly straightforward, and her recovery was representative of that.  She had a tremendous amount of pain and it was a bit of an effort to get her medication situated appropriately.

I’m sure that there is an actual medical/psychological term for it, but one of our primary challenges was associated with what we came to call the “baby high”.  As you’d expect, left to her own devices Jordan would have spent every single second by Juliet’s side in the NICU.  And, believe me, she tried.  At a certain point, though, the body simply gives out and you have to rest.  This is when you come down off the baby high.  When you leave the baby’s side and all the hormones and endorphins fade, the pain receptors that having been screaming behind the scenes step into the forefront – with a vengeance.   The nights were rough, and a vicious was cycle created that carried over to the days and compounded every night.

The frustrations were growing, and we were in danger of a catastrophic break.  Luckily, whether it was recognized consciously or not, one of our nurses knew exactly how to treat this potentially serious malady.  I may butcher the technical term, and I believe its etymology is from the ancient Greek, but it’s something along the lines of:  snuggle time.

It was as if I could see the demons of fatigue and frustration exorcised before my eyes in a mere instant.  This motherly bond, formed in the womb and cruelly severed at birth, was the precise elixir for both baby and mother.  Juliet’s numbers, which had been varying wildly and teetering on the brink of cause for concern, settled into comfortable levels and remained there.  The sight of my newest princess and my queen together was just what I needed too.

It’s a bit of a process situating all the wires, probes, and devices and a somewhat tenuous situation to actually move her out of the isolette, but we are exceedingly indebted to our nurses for recognizing the value and taking the time to make this happen.  It continues to be one of the highlights of our days at hospital.

 

I don’t mean to gloss over it, because at the time much of what followed felt so imperative and stressful.  But after going through so much and getting to where we are now, in retrospect much of it seems less so.  Every day Juliet seemed to get a little better.  She seemed more active, awake, and alert.  Her motor function improved.  The doctors ordered an electroencephalogram (or EEG) to look at her brain waves.   It reminded me of a science fiction movie, seeing her with all the wires and probes hooked to her head.  I half-expected a picture of an alien spacecraft to print from all the squiggly lines on the output sheet.

 We did receive some good news from the EEG results although her waves were generally slowed (to be expected with the amount of fluid in her head), she did not show any signs of seizure.  Seizures are common and can be seriously problematic in these cases, so we are massively thankful for this small blessing.

On February 3rd, at one week old, the doctors decided it was time to see if our beloved Rose could fly on her own.  Over the week, they had been weaning the ventilator settings slowly and she tolerated it each step of the way.  Although she was still intubated and hooked up to the ventilator, it was no longer providing breaths and the oxygen was set at atmospheric levels.  Essentially, she was breathing room air on her own, just through a tube down her windpipe.  Jordan and I were balls of pure tension.  We sent out calls for prayers to all corners.  We thought she was strong, but we feared the worst.  We were not allowed in the room for the procedure itself, so we filled the waiting room with our anxiety (and perspiration).  

The feeling of seeing our daughter’s whole face for the first time was indescribable.  She was so beautiful.  You could tell that it was a relief for her too.  Our celebration was short lived though.  We stayed with her late into the night, but ultimately our bodies gave out and we had to go home for some rest.  She had done so well all day, and we thought we were out of the woods.  I called the NICU multiple times to check on her into the early morning hours.  What were at first only minorly concerning reports, quickly escalated.  Operating solely on adrenaline, we threw ourselves into the car and raced back to the NICU.  Again, they made us wait outside, and again our anxiety permeated the room.  We were understandably devastated when the attending doctor told us that they’d had to re-intubate her.  We’d been told that the NICU is often a roller coaster ride, but this was our first major dip after mostly encouraging news since her birth.  It was a difficult setback to take, but our resolve would not be crushed so easily.

 

We had never been away from our big kids for very long at all, and definitely nothing close to three weeks, so despite having facetimed most nights, we were extremely excited for our big kids to come to visit.  Nana and Pop (my parents, Steve and Carol) have been an indispensable blessing, keeping Jack and Liliana (plus Beignet and Blanche) while we have been out of town.  It was finally time for them to meet the newest Boykin.  We absolutely beamed at the sight of our first boy and girl.  They were so sweet when they met their baby sister.  It was just what we needed to draw us up out of the depths of our disappointment from the extubation/re-intubation.

 

Having been told that Juliet would require supplemental blood for her heart surgery, we mentioned that my dad is O- and he donates all the time.  The nurse told us that we could set up a direct donation for dad to donate blood directly to Juliet.  What an awesome and special gift to be able to provide life-sustaining blood to a loved one.  Although I’m not the right type to donate directly, I went along for the trip and decided I should pay it forward by donating some of my blood to help someone else in need.  I had never donated blood before.  I hadn’t actively avoided it, I just never really thought much about it or made the time to do it.  Turns out, it was easy, quick, and relatively painless.  It’s going to be part of my regular routine from here on out.  There are numerous benefits to the donor as well that most aren’t aware of.  It’s sort of like an oil change for your body.  It helps regulation of iron levels which can decrease risk of cancer, lowers the viscosity which can improve flow, and burns around 600 calories. That’s like running a 5k while sitting in a chair sipping coffee - definitely my kind of workout.  So donate blood.  It’s good for you, a great for the world at large.

 

I huge sincere “Thank you” to everyone who has inquired about donation.  I actually found out more today about setting up a donation account in Juliet’s name so that anyone can donate in her name at any Life South Community Blood Center (located all over the southeast).  I’ll provide an update when I get everything worked out.  It’ll probably be mid-week with the holiday monday.  Don’t let me slow you down, though.  Do like I did and just use little Juliet as an excuse to get out and donate to the general supply.  Do it in her honor, and help save the life of someone else’s baby near you.  Save someone’s wife, grandma, brother… we all need blood and you never know when someone you love will need blood.  So donate now and start building the up your good blood karma.


[EDIT 2-15-16: I spoke with the group account officer at LifeSouth and we got an account set up for little Juliet Rose.  With this account, you can donate directly in her honor and they can potentially route the blood to her or do an exchange in which they would trade your blood if it is the wrong type directly for O+/- that she will need.  You can donate at any LifeSouth Community Blood Center and give them Juliet's group account number which is 21106-00265.  Thanks so much!]

Praise God for more progress for little Juliet Rose.  I don’t want to spill all the beans because there have been some developments worthy of their own posts, but I’ll just tease it by saying that our little fighter (her Nonni has been calling her Ronda Rousey) is battling and in the face of the small setbacks, she is making progress overall and we remain faithful that we have the right doctors, prayer warriors, and God to carry our little miracle through all of this.  Our most profound gratitude goes out to each and every one of you who has supported us in any way, from adding Juliet’s name to your pre-dinner prayer, to sharing this blog on your Facebook page, to driving our barfy kids 10 hours round trip to see us.  We owe you all a debt we’ll never be able to repay.