Monday, November 22, 2010

Sunday, November 21, 2010

Caleb is now three months old!

We had another good week last week. On Monday, we never did make it to the office, we just worked on paperwork and trying to get caught up. As you may guess, we didn't get caught up!

On Tuesday, the visiting nurse came and checked Caleb out. He weighed 9 pounds, 8 ounces. That is up 3 ounces from last week and a good weight gain for him. His blood oxygen saturation level was 77, right in his optimal range of 75% to 80%. Tuesday was her last scheduled day, but she is going to try to get us a couple more appointments approved with the insurance company. I hope it works because right now, she is the only consistent check on his weight and oxygen saturations, the best indicators we have outside the cardiologists office or hospital of how he is doing.

On Wednesday, the Early On lady came to assess him. In gross motor skills, he scored like a one month old. In social skills, he scored more like the three month old that he is. She gave me some more tips for feeding because we still have made no improvements. He still takes anywhere from 0 to 12 mL per feeding and then stops. She also showed me some exercises to work on building up his strength in his chest and neck. These areas are weak and may be contributing to his poor sucking skills. Overall, he assessed where she expected considering his slow start.

On Thursday, I noticed that his incision was looking a little funky. There was a knot outside his skin where the thread used for his internal stitches exited his chest. The area around the knot was starting to ooze a little and look different. His incision also looked more red than it had previously and more of the string from the internal stitches was becoming visible through his scar. The cardiologist office got us right in within hours and checked him out. The nurse practioner checked him out and removed the knot. The cardiologist looked at him and said that the incision looked OK. The nurse practioner said that she thought it didn't look bad, but that we should keep an eye on it and call if it got worse. The oozing has stopped and the redness has lessened, but now the areas where the string is showing are getting a little funkier looking. The gist I got from the nurse practioner is that it may be necessary to remove some of the internal stitches (they obviously don't dissolve) if his body does not like them. We will just have to wait and see how it turns out.

On Friday, I called the pediatrician to schedule an appointment to start Caleb's vaccinations. He has not had a single vaccination yet. He did not even get the newborn vaccines. They don't give any vaccines until six weeks after surgery, so the week after next will be the first time he is able to get them. The pediatrician's office is working with the insurance company to get the RSV vaccine covered by the insurance.

I have a sneaky suspicion that this is how things are going to go for a while. Fill out paperwork, follow up on paperwork, work with the insurance company, monitor Caleb's progress, schedule appointments, etc. Right now, we are the people directing his care. I hope this is what we are supposed to be doing. It is rather hard to go from the hospital where they may or may not tell you what is happening next to being home where you have to determine who is best suited to care for what is going on at the time. I hope that I understand what is coming in the next months well enough to make sure that we are covering all the bases and that nothing is left undone.

We have decided at our house that Caleb looks like Harold from Harold and the Purple Crayon. See what you think!

Have a wonderful Thanksgiving! This Thanksgiving, we have so much to be grateful for. We have four wonderful children now (not three and one) and we have wonderful friends and family supporting us throughout this journey. Thank you for your thoughts and prayers and please know that we are very thankful for you!


  1. Thanks for the update. LOL! I can't wait for Caleb to read this update when he gets older, say his teen years!

  2. He absolutely does look like Harold, but we will try not to call him that. :) Love to you all!!

  3. He does look like Harold yes :-). He'll always be our brave, strong, courageous, little superstar! Please give him a big kiss and cuddle from all of us in Stuttgart, Germany. Love to everyone! xox

  4. He DOES look like Harold, but then his daddy kinda does too......