The Head and the Heart

by Jordan and Brad 9:50 AM 7 comments

Wow, a lot has happened in a relatively short amount of time.  So I will try to be brief and will probably skip over some stuff, but since today is such a crucial day, I wanted to get another update out.

Over the past weeks, Jordan and I have had much consternation over the effective function of the shunt.  We were so encouraged by the progress over the first couple days, that I believe we had unrealistic expectations.  I have a thought that the nurses may have had some bias in their measurements for the same reason.  We saw a decrease in head circumference of 1 cm each of the first two days post-surgery.  After beginning at 50 cm, at one point she got as low as 46.5 cm.  However, the measurements began to fluctuate and were trending mostly back up.  Our neurosurgeon and his practitioner (a husband/wife team) left the country right after the shunt placement surgery.  So we dragged every neurosurgery resident we could find down to look at Juliet’s progress.  Jordan and I call the residents “little buddies”. At a large teaching hospital like this, most doctors have a "little buddy" that follows them around.   We don't mean it in an insulting way, we just can't remember the names of all the people we talk to, nor whether they are residents, fellows, nurses, research assistants, etc., etc.... We've recommended military-style rank insignia as part of hospital attire, but I don't think it's catching on. Of course, we didn’t entirely trust their assurances that all was functioning as expected and we shouldn’t be concerned.

When the Pincuses (Pincii?) returned from attending their “conference” in Aruba (conference, huh?), we were very relieved to have them examine her.  I’ll skip over some of the drama since it was ultimately inconsequential, but in the end they determined that the shunt was functioning , but she was retaining fluid due to her hydrocephalus being low pressure and simply due to physics.  Because of her respiratory and other issues, she is sedentary most of the time.  While other newborns are picked up, held, burped, and generally jostled, she has not had much opportunity for these movements.  As a result, the fluid was just not able to take advantage of a little push from gravity.  Dr. Pincus recommended as much time upright as possible.  This meant Juliet got a fancy new chair, and more importantly, more holding time for mommy and daddy.

Almost immediately, we began to see progress.  We had noticed when her head did not look good, she was lethargic, irritable, and lost most control of her eye movement.  When her head was improving it was immediately apparent that she felt better, was more awake and alert, eyes tracking better, and just generally a better temperament.  We are so thankful for every little bit of advancement.

Out here in Gainesville, away from home, our kids, our friends, and our everyday lives, it is so easy to become engulfed in everything going on here.  We are so deeply invested in what is going on with Juliet in the hospital, that it’s easy to forget the outside world.  We live and die each day with her successes and setbacks.  Because of that, we are exceedingly grateful for every opportunity to be reminded of just how much our lives are blessed.  We thank you all for the cards, calls, flowers, and care packages.  A specific shout out to the Nundersons for  the BBQ and boat work and to Jason and everyone at my office who contributed to the care package you all put together.  We cannot adequately express how much these things all mean to us.  A very special thanks to our good friends, the Steve and Erica Laine, for making the trip out to see us and bringing Jack and Liliana to visit.  It buoyed our spirits to have a little bit of home.  Our smile muscles must have atrophied in the hospital, because our faces were sore for days afterward. 

Another particular thanks to my mother-in-law, Kim, for making the trip from the DFW area to see us.  I know that the trip was not an easy one for her to make, and the airline certainly didn’t make it any easier.  Delays, missed connections, lost bags, etc. can test the patience and resolve of even the most seasoned travelers.  Whether or not we admit it, sometimes no matter how old we get and how much we’ve been through on our own, there is just no substitute for having your mama with you.

Jumping ahead, this week they moved Juliet out of the NICU and upstairs to the Pediatric Cardiac ICU.  While we were eager for Juliet to take the next step in her healing, we were genuinely saddened to be leaving all of our friends in the NICU.  We honestly miss our nurses, practitioners, doctors, and other staff from the NICU so much.   I’d be remiss if I didn’t say a special thanks to Sandy for everything she did for us and Juliet and specifically the Gator basketball tickets.  It was so nice to have a taste of “regular” life outside the hospital if only for a couple of hours.  Also, I can’t thank Marissa enough for everything you did for us and for working diligently with our social worker to give us the incredible gift of a place of our own.  We are so appreciative and indebted to everyone at Ronald McDonald House, and we will miss our many wonderful friends there (though we have and hope to continue to see and visit with you all at the hospital), but it is a true blessing to have a place we can really call our own for the remainder of our time here.  I also have to mention Lulu by name, your sweetness and caring helped us immensely.  There were nights I don’t know if I could have gotten Jordan to leave and aid her own healing process if it wasn’t for her faith in you and her recognition of your authentic compassion for the babies in your care.

Our stay in the cardiac wing began true to form.  Within hours of being there, Juliet pulled her feeding tube.  And before hitting the 24 hour mark, we’d battled a broken PICC line and a yeast infection of Juliet’s neck.  The infection nearly delayed the surgery, but the PCICU team was right on top of it and managed to have it cleared up in no time at all.

Last night, on the eve of the surgery to repair Juliet’s coarctation of her aorta, we were blessed to have Rev. Debra come to Juliet’s room to perform a baptism.   It was a beautiful little ceremony, and her heartfelt and honest prayer left both Jordan and I in tears.  She even gifted Juliet and us with a lovely impromptu acapella version of Juliet’s favorite song, You Are My Sunshine.  This song is special in our family, and continues to be a favorite of both Jack and Liliana, and we were truly touched.  We were proud to dedicate our daughter to the service of the Lord Jesus Christ, and to pledge to bring her up to follow and trust in Him.

This morning, we got up early after only a few hours of restless, anxious sleep, to go see our cherished baby girl off to surgery.  Everything went smoothly and we had every confidence in the team of nurses, anesthesiologists, and in Dr. Bleiweis, in particular.  After saying goodbye and telling Juliet just how much we love her, we sent her off to the operating room for surgery.  After that, we went back to her vacant room so that Jordan could have breakfast and pump.  It was quite a shock when, after 30 minutes or so, Dr.  Bleiweis showed up at our door.  Jordan later quipped that her first instinct was a Fred Armisen-The-Californians-style, “Wwwwwwhat are yyyooou doing herrre?!”   He explained that the support and anesthesiology teams take a while to get situated, and he usually just paces for a while.  It was good to see him and confirm in person that he was clear-eyed and in good spirits.

I just this very second as I’m typing had to stop to receive word from the cardiac practitioner that Dr. Bleiweis needed less than 20 minutes to do the actual coarc repair and she did very well.  She is off of the bypass now, and it will only be about an hour until we can see her again.  Praise God!  Thank all of you who have been praying and thinking about us and wishing us well.  Please continue to pray for her recovery.   We love you all.

[EDIT 14:05EST 02/18/16 - She is out of the OR and getting settled in back into her room in the PCICU! Dr. Bleiweis came up to talk to us and said that everything went incredibly well and she had great heart function after the repair.  She will remain sedated for a while and will have a difficult recovery ahead of her, but this is a huge milestone.  Please keep us in your thoughts and prayers as we help her through recovery and rehabilitation and help guide her through her various rehab and development therapies.]