Tuesday, January 24, 2012

Balancing Act

There are days when things are running by so smoothly and then bam, it seems it comes from all sides. After a smooth Christmas season, 2012 hit us like a ton of bricks and hasn't really stopped.

So, one of the challenges with Charlie is that whenever he has a virus or illness, his GI system just shuts down. We can't feed him through his j-tube because it just leaks right back out, including bile, which in turn irritates and blisters his skin. He is already really small and we don't have weight that we can lose. So, during sick season, we are often in a get sick, lose weight, get better, catch up phase. We don't make much progress. It can be very frustrating as when he is well, things seem to be okay...and they can turn on a dime and it disrupts everything. The balancing act is trying to keep him hydrated during the time he isn't eating, avoid a hospital stay and get his GI tract moving again. It is a frustrating process with a lot of ups and downs, steps forward, steps back. He got a mild virus on New Years and we struggled with him for the next 2-3 weeks. During that time, we were advised that it might be time to go to a hospital where they have more specialty in this area and that Charlie overall seems to be getting worse, not better, with his GI motility. Unfortunately, that place is more than halfway across the country. We are working on getting him in there and hoping that they have some treatment options that can help improve things for him, especially when he is sick.

This pregnancy has been going so well. No problems whatsoever. In fact, most often, it is the furthest thing from my mind as my hands are full with my two very active little boys! Well, on Sunday, all of that changed. Jared had just returned from San Diego and I was packing to leave to San Diego in the morning. This is a very busy time at work for me. I hadn't felt the baby move since early that morning. I tried to get kick counts that evening and I couldn't get him to move at all. We watched a show, I tried a few different positions and still nothing. I have a home Doppler, so I then got it out for reassurance that he was just sleepy. Usually, that thing has to only come near my belly and I can hear him loud and clear. Not this time. I tried and tried and could not find a heartbeat. Finally, in a panic, I called my dad and he advised me to head to Labor and Delivery to check things out. I've never been so scared as I was driving over there. Unfortunately, Jared had to stay with Charlie and couldn't come with me. I was praying and willing the baby to move the entire drive to the hospital. When I got there, they also had trouble finding him on the monitors. Fortunately, we were able to get a nice, reassuring shot of a beating heart on the ultrasound. I was so relieved. They decided to put him on monitoring for 20 minutes because I had reported the decreased fetal movement. During that monitoring, it showed our little guy is having a little bit of a hard time tolerating his environment. So, I got admitted and preparations began for the possible need to deliver our baby at 28 weeks. Now, we have had a preterm infant before and we have no desire to repeat that experience. That was at 34 weeks, which is a very different landscape than 28 weeks. We also have two children at home now, which we didn't when Jack was born.

We are lucky to be in a hospital with great care and great doctors who are trying to get us to the best outcome possible. We started steroids for the baby's lungs early on Monday morning and magnesium sulphate to help protect the baby's brain against damage if he were to be born early. My parents flew up to be with me and Jared's parents drove up to help care for Jack and Charlie. We are currently in a waiting pattern, monitoring the baby and seeing what he does. I'm stuck here in the hospital for the foreseeable future and Jared and I are trying to figure out this huge, seemingly insurmountable balancing act...two jobs, kids, therapy appointments, doctor appointments, and anything else that can happen in between, such as, say, Charlie getting a virus. Not to mention that, clearly, we aren't headed anywhere across the country for Charlie. To say that I am completely overwhelmed by this new balancing act would be putting it mildly. I feel terrible that we are having to make choices like postponing when we get Charlie care, how to get Jack to and from therapy appointments, whether it will even be feasible for Jared to attend the birth of this baby, etc. Not to mention that I could be here for weeks and weeks and not see my kids much.

So, that is where we are at. I never saw this coming. I have faith and hope we will figure this out. We are blessed with wonderful family, friends and employers. But I am completely overwhelmed by the logistics.