SOFT

There is a genetic condition that my nephew Emerson has. It's called Trisomy 18. Only 10% go on to make it past their first birthday.

Guess who turned one on the 23rd? My nephew Emerson.

He'll always have problems. He'll always be loved.

I got him a Super Emerson romper.

Some of the things little Emerson has gone through:

• Apnea spells when he was tiny. He would just stop breathing.
• He had an O2 tank for most of his life.
• He had an NG tube for feeding. My sister pumped and has given him her milk this whole time.
• He had jaw surgery. Most babies born with Trisomy 18, also known as Edward Syndrome have too small of the lower jaw. He had to go on a ventilator for this. That was a scariest part! Coming of the vent was super scary! They over extended his jaw. The hardware stayed in for a few months. Taking the hardware out took awhile. Having jaw surgery allowed him to eat and breath much better!
• He had his diaphragmatic hernia fixed.
• He had his adenoids taken out.
• He had tubes put in his ears.
• He was born with a club foot. That has been bent, cast, bent, cast over and over again. Then he wore a brace.
• He now has a G-Button, which sits in his stomach. He gets feed through that. It's more permanent than his G-Tube that he kept pulling out. He does eat, but still gets feed through the G-Button as well.
• He now has to wear a patch on one eye for 3 hours a day. This will help his lazy eye. 

Emerson continues to go to physical therapy. He's learning how to walk on a baby treadmill. His neck has and is weak. That's something they continue to work on in physical therapy.

Happy Birthday Little Emerson!

If you would like to help support the families and kids that have Trisomy 18, you can donate to Soft Organization!

From Their Website:

Support Organization for Trisomy 18, 13, and Related Disorders (SOFT) is a non-profit volunteer organization offering support for parents who have had or are expecting a child with a chromosome disorder (especially Trisomy 18 and Trisomy 13), and education to families and professionals interested in the care of these children.

The story goes like this...

My sister has had a lactation consultant at her home a lot. Having a child that has one extra chromosome takes a lot of work! Not just with breastfeeding, but with everything else to!

Emerson pulled his feeding tube out 2 nights ago. Lucky for my sister, she's a nurse. It took her one try to get it back in! Yay for her! She's not even a pediatric nurse.

She was telling her lactation consultant about my blog, Milking the Issue. Now the lactation consultant has my blog on her list for new mom's! :) I'm so happy! 

By the way, Emerson now is 8 weeks old! Happy 8 week birthday! Aunt Lissy loves you!

All my nephews and niece call my "Aunt Lissy." My name is really Alissa. I think that got started with my niece because she couldn't say my name. It stuck because it's just so cute to hear a little voice say, "Aunt Lissy!"

My Nephew Turned 5 Weeks Yesterday

My nephew Emerson turned 5 week this week. This is truly a milestone with babies that have Triomy 18. I'm not sure how much we'll be able to keep up the weekly parties once school starts.


Here I am with my nephew Emerson.

My son Isaak loves baby's! He calls Emerson "Baby Ermasen."
 

Emerson is a snorer! My sister thinks he caught his brother's cold. She's been getting a lot of mucus sucked out since his feeding tube was changed. Then they found out that there was something wrong with the O2 tank. They changed something and it wasn't working right. Now it's fixed. He wasn't getting any extra O2. He was snotty and struggling to breathe. They didn't realize. They thought it was just the changing of the feeding tube and maybe his big brother Elijah's cold. It's ok now.

My Sweet Nephew Emerson

My sister sent this to me. It's a photo of Emerson. I got him this gown before he was born. INKtastic gave it to me to review. Thank you INKtastic for such a wonderful, meaningful gift! Please stop by to visit their store! They have so many cute things to pick from that you can customize.

"A hero is no braver than an ordinary man, but he is brave five minutes longer."
— Ralph Waldo Emerson

When I opened it up I started to cry. Isn't it crazy how emotions work? I'm at work around a bunch of guys; I start crying. I'm not a real cry baby girl, but this one made me cry.

Do you see Emerson's double chin? He's gaining weight and beating his odds. Tomorrow night we celebrate yet another birthday. This time he'll be 4 weeks old.

Baby Update

My sweet little nephew Emerson turned a week old last Thursday. That was a huge milestone considering that he has Trisomy 18.  We had a 1 week birthday party with cupcakes, juice and noiseless party favors.

"It is not length of life, but depth of life." -Ralph Waldo Emerson

Everything seemed to be a challenge, but he was hanging in there.

Then on Friday or Saturday night (my days are so mixed up) his feeding tube fell out. It took a nurse 6 tires to get it back in. He had two apnea spells. Now his color comes and goes. He's been cluster feeding and growing more, but his strength is depleting.

We knew this could happen, but nothing can prepare someone for it. We just take things day by day.

I'm trying to take my sister's older boy's out when I can. Emerson does best skin to skin on my sister.

My New Nephew

I wanted to take a moment to mention that my cute little nephew Emerson Charles was born on Thursday last week. He was 5 pounds 15 ounces.

He's a fighter! Emerson has Trisomy 18. We didn't know if he would make it at all. He is so far doing pretty good! Emerson is taking breastmilk through a feeding tube and nursing as well. He just gets a little tired while nursing because of his low O2. So he gets extra O2 as well. We were so glad he went potty! No catheter needed!

He has given us a few scares with turning grey and forgetting to breath. My sister noticed that this happens when he isn't swaddled or skin to skin.

He's a cuddly baby! Super cute too!

On a side note: My sister's labor was horrible! Emerson was posterior: Head first, face down. She did not take any drugs. In the past she had a problem with an epidural. She was dilated to 8 for a very long time. The nurse called for the doctor to come in 15 min. My sister changed positions and yelled, "He's here!" Emerson arrived before the doctor got in the room! She did not tear at all, which was great for her.

 

"Adopt the pace of nature: her secret is patience."
— Ralph Waldo Emerson

Lately I've Had a Hard Time Focusing

I remember right before and after I had my son's, they were all I could think about. My mind wasn't on anything else. It's a mystery how my work got accomplished. Experts call it pregnancy brain.

I had my babies at the best time of year for my work, and the worst time of year for me. I'm a college teacher. My oldest was born on the 2nd day of class, August 10. My youngest was born the week after school got out, May 19. I didn't plan when they were born. At the time, we were just trying to get pregnant.

It was stressful because I had to have everything in line for someone to take my place much of fall semester. I had to have everything wrapped up early for my youngest to be born in May. Of course many students hold things off to turn things in the last moment in time. I didn't know if I'd go early; final exams had to be ready to go ahead of time. I had someone taking my place for summer school; that had to be prepared for as well.

Today I can't blame my lack of focus on pregnancy.

I've kind of gotten off track mentally with my sister due the 21st of June. My mind is all over the place. I can't blame it on pregnancy brain. I can only blame it on the unknown. When someone is pregnant I worry that the baby and mom will be ok. With my sister's baby, I know the baby will not be ok. We knew shortly after Christmas That her baby Emerson has Trisomy 18. I was emotionally exhausted when I found out. Things calmed down. Now that time is moving closer to June; I'm freaking out again. It's all too real, and I just don't want to see everyone go through the birth, sickness and possible death of a baby born with Trisomy 18. Emerson will have 2 older brothers that will say hello and goodbye. One of which can't even say his name right. His brother Elijah calls him, "Ermasen." How cute is that?

My Nephew Emerson, taken last week.

I told my work early on that I didn't know what this summer will be like. The person I told forgot. They have me scheduled to teach summer school, they scheduled me to be a speaker for a high school teacher seminar on the 24th of June and I have to get ready for fall classes. I want to thank a couple of my co-worker's for agreeing to help me out! My sister watches my boy's twice a week, so I have to take off time for her to have maternity time. 

I was asked to take photo's of Emerson and I have 2 kids of my own. My children are super close to their cousin's because we share babysitting duties to skip out on daycare. They are the same ages {2 six year old's and 2 three year old's}. I desperately want to be there for Emerson's older siblings and of course for my sister and brother-in-law as well.

A few people have told my husband and I that this is not our problem. If you consider this innocent life a problem, well it is ours. We own him. Emerson is our's because we are a family. We are supposed to be supportive to one another. In my mind there is no doubt that, that is what families are for! 

A long time ago I wrote a poem. I look at this poem for my own grounding support. It made/makes me realize that we shouldn't take life for granted!

I wrote this while in college:

His first breath I wanted to hear.

Minutes passed by; I shed a tear.

A Mother's arms held him tight.

He awoke and started his brand new life.

Life is precious when it begins.

There are no thoughts of an end.

Every step leads to flight,

Eyes start to open with a glimpse of light.

The world is plastic, nothing real.

Even your thoughts seem surreal--

A visual left untold,

Nerves that feel stay within each mold.

The touch of hand forms a bond

Just like a voice captures a song.

So much in life is fate,

Nothing's the same, yet everything relates.

What is under a human's skin?

Is it a puzzle that lies within?

Pieces that twist and turn

Could one day break down and never return.

A baby's last breath sheds a tear;

He didn't even live a year.

People stand in a room,

Staring at a child that left the womb.

Trisomy 18

My sister is pregnant with a baby that has Trisomy 18. 

Many people do not know what this disorder is, so I decided to write a post about it. 

What is Trisomy 18 also known as Edwards Syndrome?

At conception, 23 chromosomes from the father and 23 chromosomes from the mother combine to create a baby with a set of 46 chromosomes in each cell. A trisomy occurs when a baby has three number eighteen chromosomes instead of the normal two.

It is a chromosomal defect that happens in one our of every 3,000 births. This does not count for miscarriages or still births. Many miscarriages or still births are thought to be Trisomy 13 or 18 related.

Only 10% of children with Trisomy 18 survive past their first birthday. There is that 10% that have gone on to reach milestones that many thought that they never could. They do have developmental delays and physical defects. They need to live with an assisted caregiver.

Diagnosis of Trisomy 18

An Ultrasound and AFP {also known as triple screen test} can show concerning problems. They will not diagnose Trisomy 18.


CVS {also known as Chorionic Villi Sampling} and an Amniocentesis can determine Trisomy 18. It is important to know that these test's do have a low risk of miscarriage. 

How to Cope With Trisomy 18

• It is important to know that every case is different. 
• Read about other people that have coped with a child that had Trisomy 18.
• Talk to a Genetic councilor and a Pediatrician. Make sure you are on the same page as they are with care.
• Know that it is ok to grieve before the baby is even born.
• You can read more on the Trisomy 18 Foundation and Support Organization for Trisomy 13 and 18 {SOFT}.  
• Contact Now I Lay Me Down to Sleep. They are a Non-Profit Organization that has volunteer photographers that will donate their time and money to come take photo's of babies that may not live long. Part of their mission is to help families grieve.

I'm hoping that everything turns out as it should. My sister's baby is due on my birthday, June 21. His name is one that I picked out, Emmerson. My sister and my mom are rare carriers of Trisomy 18. Whenever I watch this video I cry:

News

My Organized Chaos is hosting yet another cool giveaway. This time it is for a $75 gift certificate to Zutano!

My sister's pregnant! I'd love to win this for her. I'm hoping for a healthy baby girl. There's nothing wrong with boys; it's just that we have two son's, three nephew's and one niece on my side of the family. Our niece is in high school. On my husband's side it's another nephew.

She went in for an amnio because she's a carrier of a rare chromosome abnormality called Trisomy 18. Also known as Edwards Syndrome.

She couldn't get the amnio because her membranes were not thick enough. Amnio's can cause a miscarriage, but with this rare chromosome abnormality she carries; she doesn't have a choice in the matter. They have to have the right doctors on staff if the worst were to occur.

She's scheduled for another amnio at the end of the month.

I do have some good news! My sister did get an ultrasound. The baby doesn't have clenched fists, which trisomy babies are known to have. The baby also has a developing heart and brain! The baby was hiding it's parts. It has to be a healthy girl I'm thinking and hoping!

Please put out positive thoughts for my sister! I've been on edge with this whole situation because because it effects the whole family, I love everyone so much!