not sugarcoated.

I'll start out by saying that Elliott is okay now, and that overall his truncus arteriosis repair was successful. That much is good.

But the last two days, they have been hell. 

Elliott did wonderfully during his initial surgery, tolerated the repair, being on the heart lung machine, all of it. Soon after being taken to his hospital room, they were concerned he was bleeding too much. As time went on, it began to taper, but he continued to bleed. They were replacing his blood, plasma, and electrolytes throughout the first 24 hours. He stopped peeing. His heart rate got faster and faster and his blood pressure got lower. 

24 hours after surgery, Taylor and I were sitting in the waiting room by ourselves because visitation was still limited. The resident overseeing the ICU came in and asked us to walk back with her into the unit. The first thing she said was "Elliott is not doing so well." She went on to explain that Elliott was having arrhythmia, he turned blue, his heart rate slowed. They were giving him chest compressions. We walked into his room and there were 15 nurses and physicians huddled in there, as one nurse was administering CPR. They were telling us things about what was going on but to tell the truth I don't know what was said. Taylor and I hugged each other tight and at one point I felt like I was going to drop to the floor. They pulled Taylor and I to Elliott's side, as if we need to say our goodbyes.

Then, one of Elliott's surgeons came into the room. He had left a surgery to open Elliott's chest back up right in his hospital room. They ushered us into a private consultation room, brought us water, and promised to update us as soon as possible. Taylor and I hugged and hugged and cried. We didn't know what was going on except that they seemed to be preparing us for the worst. After 20 minutes they came in and told us they found a blood clot larger than Elliott's heart, and after it was removed his vitals immediately went back to normal. He would be okay.

Elliott suffered a similar episode a few hours later and the surgeon had to turn his car around on his way home to go back into Elliott's chest right in his hospital room. This situation felt much more controlled and a lot less scary, but they still pulled out several blood clots that were causing problems. Elliott's vitals again went back to normal just like before. We spoke to the surgeon and and charge nurse and a bunch of other staff about how this happened, if it could have been prevented, what this meant for Elliott's recovery. Honestly though by that point I felt drained by everything and just didn't care about the facts. The bottom line was that my child was alive after suffering some serious complications from heart surgery. Many babies do fantastically after heart surgery but clearly my baby was having a tougher time. I struggled with the choice to put him through this surgery, but really, the truth was that Elliott would not have survived his first year without it. I wondered if these complications would eventually take his life, and if it would have been better to let him live out his life without it, without suffering from the pain of recovering from surgery. His tiny little body has been through so much, and in a way I hated myself for making him go through it.

My little boy is a strong one, though. He is indeed a fighter. That night we went home, exhausted and scared that he would not make it through the night. I hated going home, but the truth was we needed a break from the hospital. We called the hospital and spoke to his nurse several times as the night wore on, and each report was a little better than the last. Early the next morning they called us to say they wanted to take Elliott back to the O.R. to do a "wash out" of his chest, examine his heart and the repair, and close him up for good. Overall Elliott was doing much better; his bleeding was under control and his vitals were improved. This was just an extra step to take to make sure everything was okay. We consented to everything and rushed to the hospital to see our little boy before he went down to the O.R. again. Elliott came back up a few hours later, and our surgeon pulled us right in to see him. Elliott did beautifully during his last surgery. His heart rate, blood pressure, and oxygen levels were all where they needed to be after the first initial surgery. Bleeding had pretty much stopped, which meant a likely end to the blood clots that were causing the problems.

Elliott continued to improve as the day wore on, and after speaking to the nurse this morning, it is clear Elliott is over the hump. He is making much quicker progress now than they had projected a few days ago. We are thinking of that fourth surgery in the O.R. as a do-over for our little boy. He is not out of the woods by any means, but he is getting better, and I know before too long we'll be taking him home again.

And all I can say is this: wow. That little boy, he is truly an inspiration to me. It breaks my heart that he is suffering but am moved by the fact that he is still pushing. Still fighting. That little boy has so much to give this world, he's already given me so much in his short three months of life. I am so honored to be his mother.


  1. I'm so glad that he's doing better. He really is a remarkable little boy. He must've got it from you. You're being strong for him and doing an amazing job of it.

    I love you and him and am always praying for the best for you both. Okay, and Taylor too - I guess.

    ♥ Duckie.

  2. I can't imagine what that must have been like, but I'm so glad he's improving. Prayers for all of you!


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