Home - Week 2

It is hard to believe that Caleb will be 6 weeks old tomorrow. He has only been home 2 weeks, but yet, it feels like months. The demands of his schedule can be overwhelming most days. His feedings can easily take an hour to complete, not to mention his medication schedule and working to get him to sleep and then trying to keep him asleep and then waking him up to feed. He certainly has what I would call "NICU withdrawl". He has not slept near as soundly at home as he used to at the hospital. This leaves mom to not have any time to do anything! Most days I cannot even remember when I last went to the bathroom! The weekends, when John is home, are priceless. It is amazing what I can get done around here when he does a feeding instead (like update this blog! :))

We have not had too many issues with Caleb, despite his medical conditions which we are trying to learn to live with (Down Syndrome and another heart condition that will be fixed closer to when he is a year old) and not let the anxiety of them overtake my days. It is hard! Last Thursday night we hit a wall where Caleb was literally up ALL night in obvious discomfort. When we hit 4 in the morning with no relief, I felt like I had one foot out the door to the ER. Thankfully he finally fell asleep for a few minutes at a time. It was so emotionally and physically draining. I was so anxious as to what the problem could be. He would only sleep if he was held but thankfully around 4 am, he could go in the bouncy seat, as long as I constantly bounced the chair. We headed to the pediatrician to see if he could figure out what might be going on. He pretty much figured it was reflux/heartburn. I was just hoping it was not a more serious issue. I am not sure how they can rule that out so easily with Caleb's conditions, but I was hopeful the Zantac would work. Thankfully he did okay most of the day on Friday, but was told that it might take a couple days of receiving the medicine for it to take full effect. So far it seems to be doing the trick. He has slept much more comfortably the last 24 hours.

That hardest part about Caleb's demanding schedule is not feeling like I can or do spend any time with R & S. I have only made it to the school path to pick up Ryan twice on the first week of school. I have never had that much trouble getting there before. I really like to be there to greet him when he gets out of school and see how his day went. I truly hope that somehow all of this will fall into a routine soon.

Up this week...a visit with the cardiologist and the surgeon. He has not seen the cardiologist since he left the hospital, so here's hoping he does not find any issues. The surgeon will hopefully like what he sees in Caleb's incision and we will not have to go back in the near future. One less Dr. visit would be helpful. :)

We appreciate your prayers and support during this journey...we certainly hope to see some light at the end of this long tunnel soon. Light in the way of a 'normal' routine. :)