Evie the Extraordinary and Her Mommy: The Journey As We Go

At the point where we knew that Evie couldn't leave the NICU unless she gained more weight, but that she wasn't doing that anytime soon, we said yes to the G-tube. A Gastostromy tube is a feeding tube inserted into the stomach (with a surgical procedure). Evie said bye-bye to her NG tube in her nose and said hello to her G-tube in her stomach.  It broke my heart to say goodbye to her when she went into surgery.  But she was in good hands at Boston Children's. Erick and I learned how to insert an extension tube into the G-tube port and feed her formula and medications through this tube. Evie gained enough weight to leave the NICU exactly 6 weeks after she was born. Freedom!! When she first came home, we had to feed her by mouth for 20 minutes and then by g-tube for the rest every 3 hours.  The whole process took about 90 minutes.  So by the time we finished, we had about a half an hour of rest before setting up for the next feeding. It was TORTURE.  Then we realized t

Evie has mild laryngomalasia and aspirates when she's tired.  But she can eat about 20 ml of formula before she fatigues.  She gets sloppy when she gets tired. Here's a sample G-tube schedule for us, although it keeps evolving as she grows: 9:00 am           Feed by bottle 10:00 am         G-tube 85 ml at 60 ml/hr 12:30-1:30 pm Feed on demand by bottle 2:00 pm            G-tube 85 ml at 60 ml/hr 5:00-6:00 pm    Feed on demand by bottle 7:00 pm           G-tube 85 ml at 60 ml/hr 9:30-10:30 pm Feed on demand by bottle 12 am               G-tube 70 ml at 60 ml/hr 2 am-8 am       Continuous feed of 150 ml at 25 ml/hr If she drinks more by bottle, then we reduce the amount by G-tube.  The continuous feed, when it was suggested to us, was a life-changer. We now get about 5 hours of straight sleep at night if she doesn't wake up screaming because of gas.  More about gas later. I hope this helps someone, because I couldn't find a schedule with volumes or r

On the day we found out we were pregnant, we were cautiously ecstatic.  With every week, it became harder and harder not to talk about it. By 8 weeks, we had told our family and some close friends.  It was such a time of joy and thankfulness. At 10 weeks, I excitedly went in for my first OB/GYN appointment.  Because I was of a certain age, I was offered an advanced blood test for chromosomal defects.  I hadn’t thought about this much, but since I wanted the best for my pregnancy, and because insurance covered it, I agreed to take the blood test. A few days later, I received a voicemail from my OB. Her tone of voice was the kind of tone you never want to hear from your doctor when they ask you to call them back.  When I finally talked to her, she told me that the new blood test had come back positive for Trisomy 21, otherwise known as Down Syndrome.   She said that because this was a new test of placental DNA, it was known to be 99% accurate, but it was still a screening.  She to

Hanging with Grandma

Being an optometrist, I asked myself the next obvious question when I typed out that I was "blind as a bat" without my glasses.  Just how blind is a bat? I found out that I am blinder than a bat.  Bats actually have excellent vision, plus sonar to boot.  I found this cool article here.   I don't have sonar, and I can't even see the big E on an eye chart without my glasses or contacts. You're welcome.  I know your life is more full because of this fun fact. (deviantart.net)

I am so thankful for the nurses and doctors in the NICU.  Their personal attention and care kept me from going crazy when we found ourselves still waiting to bring Evie home after 6 weeks in the hospital, even though we expected maybe 1-2 weeks. We were at the hospital each day for 8-10 hours, taking turns sitting with her, holding her, and learning to do regular parental duties like changing diapers and feeding her.  If we had brought her home 2 days after birth, we would have been so lost.  The NICU was like boot camp for learning to care for an infant..and more. We quickly got familiar with the food court nearby and the Starbucks downstairs. I think I ate orange chicken from the Chinese place 4 times one week.  Thankfully we had friends start bringing us food at the hospital. Each baby had primary nurses called "primes." Our primes were Maureen and Anna, and whenever they were on duty, we breathed a sigh of relief, because we knew they had a special liking for E

When we were dating, my husband/boyfriend at the time informed me that his firstborn son would be named Evander.  I asked why, and he said he liked Evander Holyfield's name.  I said I didn't want my son to be named after a boxer, so we compromised on Evan.  I have always believed that a person's name has an impact on the rest of their lives, and I wanted the name to mean something more than just sounding good or reminding people of a boxer. By the way, "Evan" is the Welsh form of "John," which means "God is gracious".  I like that. "Evander" means "good man," which is a nice thing to be, but kind of sounds middle of the road in its meaning. This is where our stories diverge.  Erick says he then told me our daughter's name would be Evangeline.  I said that I had had a dream that I had a daughter named Evangeline.  Either way, we both agreed we would name our daughter Evangeline. As our dream of having a child beca

I had heard about this thing--the Nosefrida.  And thought that it sounded gross, sucking boogers out of a baby's nose with a straw.  But today, my friends, I realized its true worth.  It is gold. My baby was breathing quite rapidly since 6 am this morning, and I was afraid something was wrong. But as I listened, it sounded like her nose was stuffier than usual.  She has an oxygen cannula, so she occasionally makes whistling sounds through her nose.  For the rest of morning, I worriedly listened to her breathing. She looked fine, acted fine, and her temp, oxygen sats and heart rate were normal (yay for having an oximeter--a hidden blessing in this situation).  The nurses in the NICU had told me to put in a couple drops of saline in her nose to help her nose not be so dry.  That worked like magic for her breathing for all of 2 hours.  So I decided to try those nasal aspirators from the hospital. No luck. Just sucked air. I pulled the Nosefrida out of the box. I had nothing to l

Evie is here!  I've been waiting to meet her for years, and finally I have a daughter.  We found out we were pregnant in Spring 2014, and we met Evangeline (Evie) face to face just before Christmas.  Along the way, we discovered we would have a daughter with Trisomy 21, otherwise known as Down Syndrome (more on that later).  Grief turned to learning as much as possible about Trisomy 21, then turned to acceptance, and then joy again.  She is the gift that God has given us, and therefore she is a good and perfect gift to us!  When she was born by C-section (after hours of pushing, mind you), I was so out of it in the Operating Room. She wasn't breathing well, and was whisked off to have her lungs cleared first.  Before they took her to the NICU, they held her up to my head so I could meet my daughter for the first time. Do you see her eyes looking straight into my soul?  Happy sigh.  Also morphine-induced haze.  I'm glad I wore my glasses into the OR so I could see