Everything I need to know I learned in the NICU

• Everything I need to know I learned in the NICU

  Written Aug 28, 2012 1:35pm
  1. Always talk to strangers: Today I have my sweet Lora with me for the day. In between working on/handing out her angel necklaces, reading books from the hosptial library, and snuggling Logan, we went down to have a late breakfast together. There was a young boy (age 13) in the cafeteria with his mom. He has Down syndrome. I pointed him out to Lora and explained his diagnosis. He and his mom were getting breakfast and we waited behind them in the cashier line for several minutes before I got the courage to tell her how beautiful her son is. She thanked me. Then I told her that my son "recently got diagnosed with Down syndrome". She looked at me kind of funny, probably thinking, "what doctor missed that??!" Then I explained that my son is only 2.5 weeks old. Her face lit up and we exchanged a few words. As we left the cafeteria we passed her table and she mentioned a website I should check out. That led to a more indepth conversation and I found out that she lives in Ballwin, same town as us, and also homeschools her son. Twenty minutes later Lora and I finally made it up to the garden to eat our breakfast....but I'm really glad I learned to talk to strangers.
  Don't ask too many questions: The doctors seem to run test after test on Logan. He has had ultrasounds of every body part, an MRI, VCUG, CBC blood draws daily, and recently a kidney, liver and gallbladder ultrasound. When asked why they needed another ultrasound I was told, "His liver enzymes were borderline high so we want to check them out." After the ultrasound they noted a little "sludge" in the gallbladder and wanted to do more tests. Hmmm....I had two choices. I could ask what that meant and they could give me a million reasons. I could google them all and get myself into a frenzy. Or, I could say, "OK. When will we get the results?" and deal with the "issue" when it actually arose. I opted for the second option and spent the last two days rocking Logan instead of googling "gallbladder sludge". This morning all labs came back fine. Cross "gallbladder sludge" off the list. There are definitely important questions to ask, but sometimes asking too many questions will cause too much worry...I'm glad I didn't ask too many questions!
  More is not better: Feeding has been my main goal/concern this week and it is so frustrating to watch the sllloooowww progression. I was THRILLED yesterday when the speech/OT and doctors agreed to let Logan bottle feed every other feed and nurse every other feed, hoping to eliminate just putting the food through his nose. When doing rounds this morning (day of life 18), the doctors noted that he is getting the same overall amount down with the bottle whether he has one bottle or four. For example, he took 49ml yesterday morning, but then only took a TOTAL of 48ml for the next 3 feeds. This means he is working so hard to eat more often that he doesn't have the energy to eat more.....more is not necessarily better.
  Silence is beautiful: I am currently sitting in a quiet room, lights dimmed, soft music in the background (Casting Crowns). Lora is reading, I am typing, Logan is sleeping, and NOTHING is beeping....silence is beautiful.
  Expect unexpected surprises: I know I say it over and over, but we have been so touched by the support and love of friends. We cherish every comment on the guestbook, every card, phone call, text, facebook message, etc. However, it's the unexpected that shows God's hand in this adventure. Receiving a message from a fitness instructor at the gym, from the people we bought our house from a year and a half ago, college friends from over 12 years ago, childhood friends from 12++years ago, the woman who runs the food pantry we volunteer at, friends of friends of friends, church acquaintances, previous neighbors, patients I worked with years ago, missionaries in Haiti, family members from far away, .....and the list could go on and on. Each message is such an unexpected surprise....blessings.
  We continue to covet prayers for Logan to gain endurance and energy and increase feeds and decrease oxygen. Praise to God for status quo today, liver enzymes (and gallbladder sludge) that are normal, continued awake time, bonding with my Lora, and peace and assurance through it all.