Thanksgiving:
We had a great day with Joey on Thanksgiving. When we came in on that morning we found that our little guy had been extubated and walked into the sound of his cries. It was wonderful to hear his voice again and see his little face. We spent the day giving him lots of cuddles and feeling very thankful for all of the progress that he had made. Things has been moving along very quickly and Joey was making good progress. Unfortunately, the 2 weeks that followed came with a few bumps in the road.
Set Backs:
Joey had several complications the other week. He was feverish, had some fluid around his lungs, and had some inflammation in his intestines. The doctors were trying to rule out all causes and stopped his feedings for several days. They were unsure if it was an issue of infection or a result of malrotaton. After a few days his condition improved and they started the feeds back up. All was going well and Joey seemed to be tolerating the full feeds until we got an unexpected call at 2:30 am. Some of Joey's numbers had spiked, which was a cause for concern. After running some tests, the doctors found a large amount of fluid on the right side of his chest and needed permission to put a chest tube in for drainage. It took the doctors a day to figure out why his numbers had suddenly spiked and where the fluid had come from.
Joey was diagnosed with chylothorax, which is a condition that is often found to be a complication after heart surgery. Chylothorax is a temporary condition where the body can not absorb fat from the milk. The doctors suspect that this may have been the cause for the issues that Joey had earlier in the week, as it had a direct correlation to feedings. Joey has been put on a "fat free" diet where he is getting a special formula. Shortly he will be giving a skim version of my breast milk. The condition should improve on its own and Joey should be able to have regular breast milk in 6-8 weeks.
Joey had been doing great all of this week and the doctors had weened him off a lot of his meds and moved him down to a lower level of breathing assistance. Something happened on Wednesday afternoon and Joey had another set back. There was a change in his numbers, which again was a cause for concern. The doctors are not sure why this happened yet. They think he may have aspirated, could have a possible infection, or it may have been a cardiac issue. The doctors are proceeding with caution and working to find the cause. For now they have stop his feeding and put him back on multiple medicines until they feel that he has improved and is more stable. With all of these things happening we sat down with our team of doctors to discuss Joeys plan for care.
Plan for Care:
The objective is to keep helping Joey do things on his own, and nourish him so that he grows. A big part of the 2nd surgery is that he is supposed be bigger. There is a band on the Pulmonary Artery going to the heart to restrict blood flow to an extent until the 2nd surgery is done. Joey's respiratory rate has been high while recovering, and doctors believe that this may pose a problem with his growth because he's working so hard to breathe. The PA band was applied loosely to allow him to grow into it. What may need to happen, is another minor surgery to adjust the band. For now, they don't plan to do this, but it's definitely not out of the realm of possibilities. Keeping him comfortable is also an ongoing task. This is still a newborn baby that needs his precious sleep. He's always getting treatment which keeps hm up, and their also trying to make it so that he's not in pain. That's been a course for debate as we've seen him really upset, but he's also been completely content at times. The plan for care is a very fickle subject because I feel that the minute we're moving into a pattern, something throws a wrench into the plan. We're going to keep pushing forward, but growth and comfort are two consistencies within the plan. How we get there? That's a day-to-day thing.
Meeting Big Brother:
Joey was doing well enough over the weekend that the nurses allowed for big brother to come visit. Jonathan was really excited to meet his little brother. We have been showing him lots of pictures and letting them video chat. Jonathan walked in and the first thing he said was "Baby Joey in the crib". The first ten minutes went well and Jonathan got to say hi, give him his pacifier, and tell him he loved him. Unfortunately after that, he was over it. Being a toddler his attention span is short, so we struggled to get a few pictures. In the end I think we got a few good ones. We were happy to have the four of us together, even if it was for a short time.
Life at Home:
Eric went back to work the week after Thanksgiving. Fortunately, he has been able to work from home until Joey is able to come home. Joey is still in intensive care and its important that Eric be close in the event he would need to run over to the hospital. We have been trading shifts at the hospital every day. I am there in the morning and afternoon and Eric comes over in the evening. It has been draining being at the hospital everyday. I miss seeing Eric and Eric misses seeing Jonathan. We have kept Jonathan in day care, which has kept some routine to his schedule and allowed for me to be with Joey during the day. It has been difficult being there everyday and has been hard to keep up things around the house. Our home has become a bit dirtier then I like. As I am usually pretty meticulous about having a clean home, but given our current situation, clean floors just don't seem to be that important these days.
In addition to Joey having a rough week, things were not any less hetic at home. I was notified the other week that a child in Jonathan's class had lice! Gross! I freaked out and unpleasantly checked his hair, shampooed him with the treatment, and washed all of his stuff. Luckily, Jonathan did not have it, but I have been itching all week thinking about it! Then a few days after I had washed and clean his bedding from the lice scare Jonathan ate something that did not agree with him. He threw up all over his bed in the middle of the night. I got his stuff changed out and got him back to bed. Only to wake up to find it had just come out of the other end of him, which prompted for more laundry. On top of this, we spent a few hours at urgent care with Jonathan for an injury endured to his elbow. Jonathan was playing too rough and dislocated his elbow. Luckily it was a quick fix to pop back in place and he was fine.
Needless to say, after many set backs with Joey and a rough week at home, the nerves are being extremely tested. Joey has had a rough two weeks and it seems like he can not catch a break. Things had been moving along so well and we got ahead of ourselves. When it seemed that Joey would have a quick recovery, we have to remember that Joey has a complex heart, and it will take time for him to recover. The reality of our situation is: it really sucks. Words can't express the feeling Eric and I get when we're seeing the level of discomfort that Joey is in, and we can't really do anything to make him feel better. All we can do is let him know we're there and let him fight through it. I feel cheated that we could not have a "normal" experience and enjoying time at home with him. It is difficult not having a time line and being unable to plan for the future. We are worried about our careers, our finances, and Joey's future. I know that Eric and I will work through things as they come, and more importantly, we will persevere. The goal is to get Joey healthy and we hope that next year we will be celebrating the holidays at home as a family with a healthy baby.
(Joey and his nurse did an art project together for Mom and Dad)
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