Writing the story...

I began this entry on Monday and am just now posting. Sorry for the delay. I'll also try to post one for today if I have the time. :)

MondyCoopie's update: Yesterday there was a little concern for Coop's direct bilirubin level of 1.9, today's lab showed the number had jumped to 2.9 and the enzyme testing came back concerning as well so a liver ultrasound was ordered. Dr. Nold said they'd do the ultrasound in the morning but of course, as a mommy, I wanted it done that instant. The nurse read me like a book and followed Dr. Nold out of the room. She returned shortly saying, "they'll be in here in an hour to do the ultrasound. I know I'd want it done right away so I asked the doctor if it was ok for me to order it now and she said yes." BLESS THIS NURSE'S HEART! Helen you are a doll! At 11am in came the ultrasound machine and Cooper did a great job of laying still and being peaceful, for the most part. In order to perform the scan they needed his tummy empty so Helen used a syringe on the end of Coop's feeding tube to pull up any food left in his belly and I was pretty scared to see some blood join the usual leftover breast milk. Helen took it to the doctor and was told not to think too much of it but we'd keep an eye on it. It could have been old blood from delivery that was ingested, or just a bit of blood from the tube irritating his tummy. Again, "we'll wait and see." After his stomach was emptied the went ahead with the scan and just a short hour later I was handed the results, "ALL NORMAL!" Thank you LORD! My boy's liver, pancreas, and gallbladder all appear to be normal in every way! Just one more check off our list. I was told the increase in his direct bilirubin is most likely due to his IV nutrients and fats. The doctor has chosen to cut out all the lipids (fats) and reduce his TPN (total parental nutrients) in hopes of stopping the upswing of the bilirubin levels. The catch is that he needs to be digesting and upping his feedings in order to get rid of the TPN all together but he also needs the nutrients from the TPN while he builds up his ability to digest foods. It's a bit of a catch 22 so we'll be working on balancing that issue. It's such a relief to have one solid answer on something. My boy's liver is ok. He's working on his eating and he's getting stronger everyday. We never know what tomorrow brings, or the next hour for that matter, but we have hope, so much hope! My nurse yesterday said something that has stuck with me, "We aren't in control. The doctors aren't in control. Cooper is writing his own story and we're just here to help him along." What a beautiful thought...I'm so thankful for these women and their hearts! Not that I'm a huge fan of this lack of control but I do enjoy the fact that my boy has his own story. The Lord created him for such an amazing purpose and every second Cooper is here is an addition to that story...that purpose. What a story it will be! I'm so thankful to be a part of it and to have to honor of calling him my son!