The NICU had called Brian's cell around 6am that morning to say they had to stop Jace's blood transfusion because Jace had become very sick. They had to put him on the ventilator. Brian reminded me this morning, when they called, I said "I knew this was going to happen". I remember Dr. Pane telling me of the risks of blood transfusions for premature infants at Jace's age (he was 3 weeks old), one of them being NEC. At the time I made sure not to forget that she had mentioned, NEC, I kept that in the back of my mind, but I had no idea what it was.
Brian went to work that morning, we had no idea at this point where we were headed. I went to the hospital to see Jace and he looked sick. He looked very very sick. His coloring wasn't right and he was lethargic. They had started antibiotics at this point. Once I saw him and how sick he was I called Brian and he headed right up. I think we were both in shock at this point, Jace had never looked this way before. He went through his ups and downs but his downs were never like this.
So began the beginning of the worst 24 hours of our lives. They began doing xrays on Jace thinking this could be NEC. It was determined to be medical NEC at this point (no perforation in his intestines). They repeated xrays every couple to a few hours.
Dr. Helou was on at this time and he was the doctor in the NICU that we both felt very connected to. We trusted him with all that we had. Even though he was the one who gave us the majority of the bad news when it came to Eliana, there was something about him that can't be explained. He cared with his whole heart, he loved our babies and loved us. He would check on them even when he wasn't on service. He is a doctor, compassion, trust, loyalty, strength and so much more rolled up in one amazing person.
They had called in a pediatric surgeon from Johns Hopkins, Dr. Lukish, for a consultation and he was heading to the NICU to look at Jace and review his xrays. It was also confirmed at this point that Jace's PDA (Patent Ductus Arteriosus) had opened back up - this was caused from the NEC.
I believe it was around 2 and I went into another room to pump. I knew Dr. Lukish was on his way. While I was in the room he arrived and had started talking to Brian and Dr. Helou and at that point Julie (one of Jace and Eliana's nurses and someone who is a great friend to us now) came to get me from pumping, knowing I needed to be in the room to talk to Dr. Lukish. Why? Because the last xray showed Jace's intestines had perforated and emergency surgery was needed. Dr. Lukish explained to us what would happen but also that some of this was exploratory because they didn't know what he was going to find once he opened Jace up. He also confirmed that once Jace was ready for his reversal surgery (ostomy reversal) he would fix his PDA. I cried. I immediately cried. How could our three week old baby go through a surgery?
Dr. Lukish is the best. He is a truly gifted surgeon and we knew that Jace was in the best hands he could be in. We knew this first from Dr. Helou - if Dr. Helou had faith in him, knew he was the best, we knew we could. We had a chaplain come up before his surgery to pray with us and Jace. Chaplain Lisa Fischer who will always hold a place in my heart. They took Jace back for his surgery and Brian and I waited.
We were standing at the NICU doors when he came back from surgery. Dr. Lukish came right to our side and said the surgery went really really well. Less was perforated than he thought would be and the surgery was successful. He pulled the intestines through (ostomy) and reminded us the next 24-48 hours are extremely critical.
They moved Jace back to room 9 at this point (this is the room where Eliana started off and eventually they were moved to the same room to be together - room 11). Once they had him situated, Brian and I were able to go see him. He was still out of it from the medication and all that his little body just went through. There were two nurses taking care of him because of all of the different meds he would need during this critical time. We stayed with him for a while. Brian went home to be with Kiera and be there for her. My plan was to stay in the hospital that night, in one of the parent rooms. I took some pictures of Jace and some video. I prayed. Finally around midnight, Dr. Goddard suggested I go get some sleep. I said goodnight to Jace and stopped by to say goodnight to Eliana and went to the room. Brian and I skyped then, never knowing or thinking the worst could happen.
I see so much of Eliana in these pictures. What I wouldn't give to have him back with us.
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