Juliana's story

Juliana Elisabeth was born on November 13th at 1:11pm. My blood pressure had been rising for a few weeks & both our family & the doctors were concerned that I might be developing preeclampsia again. It was 5 days from our scheduled induction date & rather than wait & risk the need for Magnesium Sulfate, we decided it was best to go ahead with the induction a few days early. Once the induction was started, I had contractions every 2-3 minutes all night with severe nausea and several episodes of vomiting. It was a long night, but we were so excited when Juliana made her grand entrance.  The midwife laid her on my abdomen for a very brief time before she was whisked away for resuscitation.

I have no idea how much time elapsed before the medical staff brought our Juliana back. She was receiving oxygen through a nasal canula, but she was pink and beautiful & looked like a healthy little girl. At this point, I was able to hold her for a minute before she was taken to the cardiac ICU.

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The first few days were like a dream come true - our little love seemed to be doing well. She still needed some oxygen therapy, but the doctors thought the operation she was scheduled to have on 11/18 (the Norwood procedure) would fix the problem. We were able to hold Juliana & begin feeding her. It was uphill battle at first, but once she got the hang of it, she was an avid eater. She loved to be snuggled tightly & was doing a great job of nursing.

When Monday arrived, the attending physician in the ICU called to say that because Juli was still having oxygenation issues, they thought her surgery should be moved up to Tuesday instead of Wednesday. Anthony and I rushed to the hospital to spend some time with her, only to find out that the pod Juliana was in was closed for visitation because another baby was receiving a procedure. It was nearly four hours later that we were finally able to visit & I only had one chance to nurse her before she became NPO for surgery. Anthony and I both stayed in the ICU that night. I spent several quiet hours with Juliana tucked in my shirt, praying for a good surgery & just savoring the time together. This was the best time that we had together.

Anthony was able to carry Juliana almost all the way to the OR on Tuesday morning. We both gave her a kiss & I cried as we placed her in the hands of the anesthesiologist.  We met with her surgeon, Dr Spray, briefly before the went to perform the procedure, which we expected to last 2-4 hours.  Less than two hours later, the surgery was completed & everything had gone well. We were so relieved and so grateful!

I was exhausted because I hadn’t slept more than 2-3 hours since Juli’s birth because I was pumping and nursing her in the ICU. We decided that I would spend the night back at Rolly and Margie’s house so that Juli and I could both rest and recover. We decided to take Gavin out to play for a little bit because I’d barely left the hospital since Juliana’s birth. 

While we were at the playground, the ICU doctor called to advise that Juliana’s oxygen saturation had improved for a few hours, but that it was low again & they feared that the shunt they’d placed that morning had a clot that was blocking perfusion to her lungs. Baby girl was taken to the cath lab to make sure her shunt was not occluded and that her pulmonary circulation was good.

The first attempt to place a stent in the cath lab somehow advanced too far and ended up in the wrong place, so the team inserted a second stent to open up a "twisted vessel," but the guide wire got stuck & in the process of removing it (the doctor actually said, "yanking it out"), they tore another vessel, which may have caused irreparable damage to a very small portion of lung tissue. The doctor advised that after this happened, they started to suction a lot of secretions from her lungs & she went into cardiac arrest. Our sweet baby had CPR & was placed on an ECMO circuit. She was hooked up to an EEG to monitor for seizures & the nurses checked cultures of everything.

All of her cultures came back negative & her heart function seemed to be improving on ECMO. The doctors wanted to give Juliana the weekend to rest and allow her heart to become stronger.

Gavin came down with a cold on Saturday & we were unable to get him down to bed on Saturday night. He was still tossing and turning in our bed at midnight when the ICU doctor called to say he thought Juliana’s head ultrasound might have evidence of bleeding, but that the test was unreliable and he needed a CT to confirm.  At 0200, the doctor called to say that there was "significant bleeding" in Juliana’s brain and that we needed to come immediately.

When we arrived, the doctor advised that Juliana had bilateral subdural bleeding with a small shift, but that there had been no change in her neurological exam.  The plan was to stop her Heparin infusion and continue to run ECMO until the team arrived to remove her from the circuit first thing in the morning.  We were so thankful when the repeat CT scan showed that the bleeding had not increased & even more thankful when the team arrived to remove her from the ECMO circuit. She also had a catheterization at this time to make sure blood was flowing through the shunt placed during her surgery.  Again, everything went smoothly and Juliana was back in the ICU within a few hours.

The next few days continued to be a roller coaster – the bleeding around Juliana’s brain remained stable, but she needed anticoagulation therapy for the shunt placed to perfuse her lungs.  Juliana was sedated and paralyzed most of the time.  On 11/24, the ICU team started an infusion of low dose heparin and we were told that if her head CT was stable that night, she would go to the cath lab on 11/25 to assess the pulmonary arteries and the shunt.  Once again, the cath team found nothing occluding the shunt or the pulmonary arteries, but Juliana continued to struggle to keep her oxygen up, even with a huge amount of respiratory support.  Anthony and I both thought that she had just been through so much & she needed a few days to rest and heal before the support could be weaned. 

The afternoon of 11/25, the medical team was at Juliana’s bedside trouble shooting her ventilator settings and medications together.  A couple of the anesthesiologists – Drs. Montenegro and Nickleson –  worked tirelessly to bring her oxygen saturation up & when we left, her sats were higher than we’d seen most of her stay.  Dr. Spray came by and advised that he thought we should back off on some of the medical interventions and give Juliana a few days to rest and heal. We went home for a few hours feeling encouraged.

After getting Gavin to bed, we returned to the ICU to visit our sweet baby girl for a few hours.  We were completely shocked when the doctor advised that the partial pressure of oxygen in Juliana’s blood was critically low and that she would likely not survive.  He presented two options for us – letting her rest with the current settings and hoping things improve or “normalizing” her ventilator settings, which meant cutting her tidal volume in half.  After what we’d seen the previous afternoon, we requested the help of the anesthesiologists who seemed to work magic the day before.  Dr. Montenegro came in to the hospital on a night that she wasn’t on call to try and help our sweet Juli.  She was able to set the ventilator to improve Juliana’s oxygenation, but advised that the settings would eventually take their toll on the ability of our sweet girl’s heart function.  The doctors believe that Juliana had some kind of rare lung disease that they couldn’t explain. 

One of our favorite nurses, Peggy, came in for day shift. She asked if we’d like a private room to spend time with our tiny love.  I was able to hold Juli for over an hour before the transfer to our new room.  Peggy arranged for me to sit with her (in a wheelchair) for the move.  Before we left, I saw Juli’s heart rate and blood pressure start to drop on the monitor & told Anthony I thought our time was very short.  He was able to hold her for a few minutes when we reached the new room before Dr. Dewitt came to tell us that Juli’s heart had stopped. She slipped away quietly in her daddy’s arms on his 35th birthday, which also happened to be Thanksgiving.  The resident removed her endotracheal tube just after she passed and we finally saw Juliana’s whole face for the first time (she always had tape across her face from the nasal canula & then the ETT). She was such a beautiful little angel.

Juliana lived just 13 days & endured more than many people do in a lifetime. We are so heartbroken by how little time we had to snuggle our sweet girl & give her that human contact we all so desperately need.  We did tell her how much we love her – how much we will always love her, & how much we wanted her in our lives.  I wish I would have sung to her more rather than being embarrassed by my voice. I wish I could have tucked her in my shirt every night, because she loved that so much. I wish we could have just fed her & rocked her & passed on all of the suffering.  Juliana had a broken heart & now all of our hearts are broken.

Thank you for all of the support you’ve shared with us. Thank you for your loving messages, your kind thoughts, and your fervent prayers.  You have been & continue to be a blessing to us.

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Posted by Kim on 2 replies


01. Dec 3, 2015 at 04:17am by Ruth pearce:

Thank you Kim for sharing your love you and your husband hAve for Juli.

03. Dec 3, 2015 at 12:07pm by Mom:

My dearest Anthony and Kim, nothing can ever be said or done to ease the heartache and lighten the burden you now carry with the loss of your precious child.  In all of this you blessed me with sharing your Juliana with me.  I am forever grateful for being with my granddaughter during those sweet moments in her too short life.  I pray this may somehow give you comfort:
Juliana will live forever in my heart, too.
Prayers that God keep watch over you and Gavin and hold you close to His heart. XO

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