On Friday, January 20, we noticed Daniel was a little warm before going to bed. Not enough to even be a fever really, just warm. He woke up on Saturday morning and seemed his happy self, but sounded a bit congested. As the day went on this congestion worsened, but he still didn't seem to be bothered by it. But, that night around 8pm, things took a turn for the worst. He started to act fussy and uncomfortable. Around 2am we noted his breathing had become very labored and we began to really worry.
On Sunday, at 9am when they opened, I took Daniel to Urgent Care. Upon arrival, we were pretty quickly sent back to the triage room. When I opened Daniel's PJs for the nurse to get all his vitals, she immediately looked concerned. She hooked him up to the machine and after taking a glance at it, walked out of the room and came back with another nurse. I knew this was not good. The next thing I know, we are being taken to a room, cultured for RSV, and quickly suctioned. They got a fair amount out, but not as much as you'd expect. Next was a breathing treatment. Not to mention the constant visits of nurses (now three of them) coming in and out. The breathing treatment seemed to help a little, but he was still breathing very hard and his oxygen levels (79-83%) were very concerning. I asked if I could feed him since he could breath a little easier. That seemed to help a little too, but again, not enough. Next came the oxygen tanks. After tank #1, they took him off and his heart rate immediately darted up and his oxygen levels plummeted. This is when it was decided he needed to be taken to the Children's hospital for further evaluation.
Cooks Children's wouldn't allow Daniel to be transported privately because of his oxygen levels so we had to wait for an ambulance. Meanwhile, the RSV test came back positive. He was now put in isolation. When the EMTs arrived, they immediately noted a heart murmur and this is where the "cold", or RSV, became less of a concern. Daniel was hooked up to machines, had an IV put in, and blood drawn. They then put him in his incubator- a box that resembled a microwave- and we were on our way out to the ambulance. That was the hardest part of the next couple days for me. I could hear my baby crying and I couldn't do anything for him, but worse than that was seeing his little hand and feet pressing against the glass reaching out for someone. And, I couldn't do anything. That is a sight I will never forget.
Once we arrived at Cooks, we were met by a team of technicians, nurses, and a doctor all wearing masks, robes, and gloves. Daniel was registered and the testing began. EKG, x-rays, sonogram, more blood drawn, etc. It was now around 2pm. They told me they suspected a heart defect and were going to be evaluating him for a possible hole in his heart. A couple hours later, or so it seemed, they came in to tell me they found a large hole in Daniel's heart and he was going to be admitted to the hospital. We got up to our room at 6pm and were told the cardiologist would be in the next day to make a plan for Daniel, but that his hole would require repair. It had been a long day and I knew it was going to be an even longer night.
Our sweet neighbor went to our house about this time and watched Joseph and Maile so Mark could meet us at the hospital, despite Joseph also being sick and all the nurses at the hospital guaranteeing he also had RSV if he had woken up sick. We were so grateful for her and for the opportunity for Mark to be with us at the hospital for a few hours. This was one of my favorite moments- Daniel and Mark's sweet reunion after our hard day.
Our home teacher and friends came to visit and gave Mark and I a blessing (Mark had already given Daniel one). This brought us such great comfort and strength.
We met with Daniel's general care team and then the cardiac team the next day. He was diagnosed with a large VSD. Phase #1 of his plan is to get over the RSV. Phase #2 is to stay healthy and allow his heart and lungs to regain some of their strength. He will also have all testing repeated, plus some additional tests, in preparation for surgery. Phase #3 is open heart surgery to repair, or patch, his VSD. Phase #4 is a 6-week recovery, beginning with a 1 week hospital stay.
Everything is still a little surreal. My mom flew up as soon as she heard and was here Monday morning. We were so grateful to have her here. I was able to hold Daniel most of last week and give him the extra attention and love he needs right now. We spent a few days at his pediatricians office last week as his oxygen levels went down again and he started losing too much weight. We hope to have a much less eventful week this week. Our goal this week is to plump him up. He's been struggling to eat so I have greatly increased my caloric intake to give him as many calories as possible at each feeding. We are also giving him some formula supplements, although he really does not like that- Mark even tried feeding him with a spoon like the big kids. It's been the most successful way thus far.
We have been surrounded by love, sweet messages, prayers, support, and so much more from our family and friends, and especially our ward. We are so grateful for it all and have felt so loved and lifted through this. In hindsight, so many of our questions and concerns that we have had and asked from day 1 were answered this week. Daniel is a fighter and has been patiently waiting for us to discover his needs. We are so blessed to have his incredible spirit in our family.
We thank you for your continued prayers and love, and we will keep you posted through the next few months. If you are local, please don't be concerned when you don't see Daniel and I for the next few months- we're keeping him as isolated as we can to help his body become healthy enough for surgery on March 9.
