My worst fear

Besides "I love you," probably the most common thing I said to Juliana in her brief life was, "I am so sorry, baby..."
Why? Because sometimes medical intervention is torture. The thought of our little love enduring CPR, being placed on ECMO, developing subdural bleeding, & going to the cath lab on three separate occasions (in addition to the open heart surgery that we knew would happen) just breaks my heart.

When we received Juliana’s diagnosis, we were told that 5-10% of babies with HLHS have another concomitant condition that complicates the diagnosis.  There is apparently no rhyme or reason to this - any system of the body can be involved.  I asked the fetal heart team at CHOP if we would know if something else was wrong after Juliana was born so that we could make an informed decision about whether or not to proceed with the surgery.  The team advised that they thought we would know, that it is usually obvious, and that they didn’t think Juliana would have any additional problems.  I made it clear that if Juliana was too sick, I didn’t want her to subject her to unnecessary pain and suffering.  I didn’t want her to live her entire life attached to a ventilator - I just wanted to hold her, feed her, & love her.

You see, as a nurse, I’ve seen too much of that - extending quantity of life at the cost of quality.  BUT we had so much hope. Juliana looked like a perfect, healthy baby. She required a little bit of positive pressure ventilation at birth, but I’ve seen lots of babies need some resuscitation and do very well. We didn’t know that HLHS babies usually don’t require oxygen prior to the first surgery. We weren’t given any indication that something else could be wrong (because nobody knew).

We thought the first surgery would fix the increased oxygen demand.  When we received the call that Juli’s surgery was being moved up a day, we went to the hospital to spend time with her, but we were turned away because another baby in the same area was having a sterile procedure.  It was four hours before we were able to get back and spend time with our little lady on her last "normal" night.  I only had one more opportunity to nurse her.  Anthony and I each held her for a few hours before trying to get a little rest.  I’d never been so scared as when we handed her over to anesthesia that morning.  The surgery went great & we were encouraged talking to the surgeon afterwards - we even discussed possible discharge in 2-3 weeks.

Juliana’s oxygen was stable for a few hours before it started to drift down again.  We received the call that she needed to go to the cath lab because they feared that the shunt that was just placed hours ago had become occluded. As I shared previously, this did not go well; Juliana went into cardiac arrest, was given CPR, and placed on ECMO.  Juliana’s heart function was improving for several days & the doctors made the decision to keep her on ECMO through the weekend.  Saturday night, we received the call about the subdural bleeding.  When the bleeding stabilized & she was taken off ECMO, we hoped she had cleared her biggest hurdle.  In each of these episodes, I feared that we would lose Juliana, but she fought to survive.  So many people were praying for her (& for all of us).  We were so scared that we didn’t know how to pray - there were days where all we could muster was "God, please save our baby."  But still, we had so much hope... there was no mention of lung disease until the day before Juliana went to Heaven.

As I mourn the loss of our sweet baby, I wrestle with the decisions that we made.  I can honestly say that now I have lived my worst fear.  But if there was ever any hope, I don’t think we could have lived with the decision to NOT try and save her.  We loved our Juliana so much & we always will. She would have been three weeks old today. We miss you so much, baby girl.