G-Tubes: A whole new world

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 that we were trying to adhere to the NICU schedule, which is the most artificial, unrealistic way to take care of a baby, since life happens a little differently outside of the hospital, where nurses don't change shifts every 12 hours and mommy and daddy actually need sleep.

Having been in the NICU bubble for so long, it took me a bit to realize that I didn't have to live like that anymore.  Our pediatrician, GI doc, and cardiologist gave us advice on how to spread out the feedings with higher volumes, and that changed our lives.

I had searched online for people talking about their feeding schedules, but didn't really find anything. So I'll post more on our journey to normalcy with g-tube feedings later.

I've come to appreciate the great network of families with experience with Down Syndrome.  One of them told me about the Facebook group "Feeding Tube Awareness."  I highly recommend this site as a way to get better acquainted with G-tube living.  I had no idea there was a world of G-tube accessories!  And that there were so many kids out there with G-tubes!

Here's my little tubie...one oxygen tube and one G-tube. I snipped a hole at the bottom of her Swaddle Me for the G-tube. (P.S. Sleepers with snaps are way more convenient than sleepers with zippers.)

Penguin zippered sleeper before mommy got smart and cut a hole in the bottom of the leg.

A G-Tubie's Schedule

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 rates anywhere, and it would have helped me a lot to see an example written out, rather than just being told to feed her every few hours. 

The picture shows her using an Avent bottle because that's what I started with, but once we found out she was aspirating and we had to use thickened formula, we switched to a standard Dr. brown bottle with a Level 3 nipple. 

The Diagnosis: An extra chromosome

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 told me our options, and was extremely compassionate as I took it in.  When we hung up, I thought my world had come crashing down.  I asked God why He would let this happen to us when we had already been through so much to get pregnant.  I barely got the words out of my mouth when I called my husband.  He came home early, and we just grieved together.  We didn’t know much about Downs at the time, but we knew it would change our lives.  

Just to tell you a little about Trisomy 21. It happens from the beginning during cell division when the 21st chromosome gets an extra copy, and the baby has 47 chromosomes instead of 46.  1 out of 660 babies have Trisomy 21, which manifests as Down Syndrome. These babies develop physically and mentally at a slower rate than other babies.  We vaguely knew this, and were just devastated.  I remembered that the day I took the blood test, there was a young man with Down Syndrome who came into the lab’s waiting room to say hi to everyone. He was obviously a regular there, and made everyone around him smile.  I remember thinking how nice that was, and at the same time asking God to please let our child be healthy.  As I look back, maybe I was being prepared for something different than my expectations.  Part of me wasn’t surprised at the new development. 

That evening, our pastor graciously came over late in the evening to talk with us.  When he heard our story, we thought he would pray with us that the baby would be normal. But he said something unexpected.  

He said that most couples who came to him with the same issue ended up not having a child with Downs.  But that if we did have a child with Downs, we would be in for something extraordinary.  He said he knew that we expected him to pray for the test not to be true, but he almost wished for something more for us--something (or someone) extraordinary in which God would do something more special than we had imagined.   We also talked about how wonderful kids with Downs are, and how no matter what, this was our baby first, and anything else was secondary.  We were really comforted and challenged to think about this unexpected diagnosis as a gift, and not a tremendous sadness.

As we researched and processed, it was apparent that with the old standard test for Trisomy 21, many people had false positives, and ended up having normal, healthy babies.  We grew in hope that the screening test was wrong.  I had decided not to have an amniocentesis because I had been through so much, and because I couldn’t imagine terminating our baby no matter what the diagnosis.  The Bible verse that kept going through my head was:

James 1:17

17 Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows.”

We truly believed that we had prayed so hard for a baby, and that whatever gift God gave us was His good and perfect gift just for us.  Despite this unexpected diagnosis, Erick and I firmly believed that this was our baby, and we would get through this together and with God’s help.
When asked several times about the option of termination, we firmly told the doctors that this was our baby and that termination was not an option.  The test also told us something else--that this baby was a girl.   Just knowing that made me love her even more.

Fast forward to 20 weeks.  The unknowns of whether or not the test was accurate started to weigh on us, and we had an amniocentesis done.  We wanted to be able to prepare ourselves and prepare our families if we needed to.  When the fetal DNA tested positive for Trisomy 21, we were able to move forward with preparing for our baby girl.  I started to read everything I could about Down Syndrome.  I read so many stories about people with Down Syndrome who have gone on to become actors, musicians, athletes, lobbyists, PhD’s, and overall just people who bring joy to those around them.

Even while we were struggling with processing everything, I could still see God in the details.  I knew that someone at work had a child with Down Syndrome.  As I shared with her what we were going through, she became my cheerleader at work, and shared everything she could with me about what she had learned with her now 9-year-old daughter with DS
.  When we went to meet the Director of the Down Syndrome program at Boston Children’s, I found out the secretary had already put in a good word about us with the Director, and we felt so taken care of.  When we emerged from our appointment at Boston Children’s, we were reassured in knowing that there is a team of doctors, therapists, and specialists ready to help us with our baby as soon as she is born, and will continue to help us through adulthood. 

No matter what, she is our perfect gift. We have named her Evangeline, which means “Good news.”  To us, she is the best news, and we hope that she will be a reminder of God’s love for us wherever she goes, and that she would spread joy to all those who meet her.  

I believe completely that just as God created us and loves each one of us so much, that He shaped and formed Evangeline in my womb, and that He loves her more than I or Erick ever can.  I am also reassured that God loves ME so much.  If He would send His only Son to die for me to save me from my sins and to restore me to a personal relationship with Him, then of course He will be with us through raising Evangeline, and He will provide for our needs.  He wants us to continue to trust Him and has in turn entrusted me and Erick with a special and extraordinary little person, who will bless us a thousand times over.  

I am not underestimating how much work it will be to raise our daughter. It’s hard work to raise ANY daughter, not to mention one with special needs.  But Pastor Dave also pointed out something else--we have a community of friends and family who love us and already love our daughter.

What has been most helpful to us throughout this process of going from devastation to joy is the response of our friends and family, who instead of saying, “I’m so sorry,” they tell me how beautiful she is, and how they already love her. We have been showered with love (and food) and people genuinely caring how we are doing.  Our friends' kids are excited and waiting to play with her.

I look at my daughter and am sometimes overwhelmed by all the visits to specialists that she has, and worry that she will have more health issues than she already has.  But I am also learning to entrust her to God's care, since He was the one who gave us this gift.  Mostly I just stare at her in awe that we have a little girl who is so beautiful and so feisty. 

Fun with Instagram

Hanging with Grandma

Bats are not as blind as you think: Random trivia

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.
http://fc08.deviantart.net/fs70/i/2010/342/9/3/blind_as_a_bat_by_sabrea-d34iknx.jpg (deviantart.net)

The NICU: where time passes you by and you think everything is done in 12 hour shifts. In other news, orange chicken.

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 Evie. Maureen even came in on her day off just to say hi to her patients.   When primes weren't on duty, there would be nurses who didn't know Evie yet, and had to learn about her needs.

Evie has a Ventricular Septal Defect, an Atrial Septal Defect, and Pulmonary Hypertension.  We knew she had the VSD and ASD prenatally because I had fetal echos done while pregnant.  We didn't know the extent of how big the holes in her heart would be.  The ASD is small. It turns out her VSD is 5-7 mm large, so we are praying for a miracle to close the hole in her heart. If it doesn't close, she will need open heart surgery before she is 1 year old. 

 Please pray for a miracle!

Behind the Name

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 became reality, it was a relief to already be set on names.  As we came to accept and embrace our child who happened to have an extra chromosome, I thought more about the meaning of "Evangeline."  It means "Good News."  And to us, she is definitely good news.

Evie is our nickname we have in mind for Evangeline because her name is so long. But we keep calling her Evangeline right now, or just "baby" or "cutie pie."

I'll post more about how we knew we were having a girl very early on.

Never thought I'd be happy to see a booger.

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.
NoseFrida the snot sucker product photograph

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 lose, because the next step was calling the doctor, and I have had enough of doctors' appointments for the last few days. The first try yielded nothing.  But as the saline started to loosen things up in there, and the nasal cannula was poking around in her nostril, I saw what looked like a booger!!  Never thought I'd be happy to see a booger.

2nd try--I held her in one arm, had the straw in my mouth, and held the tube in front of her nose. I sucked, and...the biggest booger I've ever seen came out of the tiniest nostril.  Did I mention I've never been so happy to see a booger?  After that, her breathing immediately calmed down.  Thank you, Jesus, for the Nosefrida and for sparing us from another doctor visit!!  Thank you, Swedish people, or whoever invited this thing.  Best Invention Ever: The Nosefrida

Introducing Evie the Extraordinary!

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 her. I am blind as a bat without them (more about bats later).

This blog will be to document what I learn along the way about parenting, Down Syndrome/Trisomy 21, G-tube feeding, toting oxygen tanks, faith, and the adventure of being Evie's mommy.  I am 7 weeks into being Evie's mommy, and I am so in love with her!  I already know she is extraordinary, because she has been a blessing to people even before she was born.  I am looking forward to learning all the ways that she is extraordinary, and also a typical little girl. 

Evie's Adventures in Storyland, from a sensory sensitive kid's point of view

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