The purpose of this blog is to provide you all with more thorough updates regrading baby Emily (and everyone else!) since many of you have asked lots of questions regarding her health, surgery, and our move back to Georgia.
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To begin, I'll give you a little background...
The thought of having a second child was thrilling for Billy and I. Lilly was a surprise, although a very welcomed one at that! When we decided to actually plan our second, Emily came the minute we said "let's start!" We were thrilled that Lilly would have a little brother or sister.
We were hoping Lilly would have a little brother, but there's nothing like two daddy's girls. I would say that Billy has his hands full.
Everything proved to be normal with this pregnancy until our 20 weeks ultrasound. The U/S tech was not getting a clear view of the heart and was concerned that not all chambers were present. This of course alarmed us all and the worrying began. I was referred to a high-risk fetal specialist. We went about our daily lives constantly thinking of the "what ifs". It's hard to even remember back to that time. We were so positive that the tech was just not seeing clearly...
At 24 weeks, we were seen at Prenatal Wellness, the new OB group that would become a permanent fixture in our lives for the next 6 months. We went in for a fetal echo, an ultrasound of the heart that looks closely at size, chambers, blood flow, and much more. Billy's parents were with us and we were both so happy to have someone from the family there to help support us.
During the Echo, we were silent. Really, there was nothing to say. We just sat and watched. The ultrasound tech this time was young and awkward. I remember thinking that. She didn't have good people skills. I had no idea what I was looking at on the monitor. It took forever. F-O-R-E-V-E-R in my mind. After the ultrasound was done, we waited for what felt like another eternity for the doctor to read the scans and report back to us.
Back in walked three people to our room: the ultrasound tech, the doctor, Dr. Chang (whose daughter I conveniently taught!), and a genetic specialist, Leigh DeHolt (why was she invited?) Dr. Chang explained to us that Emily had a complete AV canal. In the simplest terms, this means that she has two holes in her heart that affect all chambers. It allows extra blood flow to the lungs causing the heart to work faster and of course, harder. Blood simply doesn't flow properly, gets all mixed up and causes poor circulation. For those of you that want a more medical approach to this, Google is the best place to start :)
The genetic specialist was in the room because AV Canals are typically associated with Down syndrome. At least 50% of children born with congenital heart defects also have DS. Leigh was there to help us discuss our options of genetic testing-if we chose to do that. I am a planner; testing was a must.
We sat down with Leigh and discussed all the members of our families...did anyone have any genetic disorders? Heart conditions? Anything? Nope. All clear. We decided to do the MaterniT 21 test. It's a blood test. An amnio was too scary and I didn't like the risk factors associated with it. The test consisted of me giving two viles of blood and waiting..and waiting..and waiting.
6 very, very long days later, we were in the back of the neighborhood having family photos taken for the fall and Lilly's 2nd birthday. It was a Wednesday. I'd had the number of the doctor memorized and waited daily for the call. Positive or negative for Down syndrome. At 5:30pm, Leigh called. Our test was positive. I could not possibly tell you what she said on the other end. All I heard was she has Trisomy 21. I hid behind a bush and cried. Billy came and we all cried together. It still hurts deep inside to think of this day. Unless you have a child with special needs, you don't know what it's like to get a phone call like this. You can read and sympathize, but you really have no idea what it's like to lose what you thought was perfect.
The first phone call we made was to my mom. Joe answered the phone. He couldn't understand what I was saying, but it was delivering the news. I don't know who we called next. Probably Billy's family. I don't remember much else of the day. We came home, Lilly went to bed, and I got into mine. Neither of us went to work the next day. Instead, we cried and cried and cried a little more.
The grieving process began almost immediately. I didn't want to be pregnant anymore. I was done. Disconnected. I would be caring for another human for the rest of my life. Why in the world did God do this to us? We went to Mexico for a getaway and I guess drank too much tequila?? That thought certainly crossed our minds. Although-of course that was not the reason. We were pretty much zombies for a while. Marital communication was strained. How do we talk about this? We did-and overtime, coped and learned how and when to talk to one another about our feelings. Once we became educated and met people with children with DS, coping became easier.
For the next 12 weeks, we went to the doctor weekly for ultrasounds. Emily grew slowly and her low weigh was always at the top of the list for discussion. At 36 weeks, it was decided that we should go ahead and induce labor the following week. She would grow better outside of me. Her poor growth is all a part of her heart defect and disability. They come hand-in-hand.
On Tuesday, December 11th at 6:00pm, I was induced. It was much more painful than Lilly's labor. Contractions were stronger and harder. Wonderful, wonderful drugs came at 5cm and from there Emily made her way into the world. There was no waiting. We went from 5-10cm in about 10 minutes. She was born on December 12, 2012 at 5:35am weighing 4 pounds 15 ounces. One push required. This little lady decided she wanted to put all our worries aside and get out!
Once here, she was amazing. I got to hold her right away. No rushing to the NICU, no frantic calls to the doctor. Just a normal, pink, screaming baby! Not gray like they said she'd be because of her heart, not limp like a rag doll because of the Downs, sturdy and pink. She went to the regular Level 1 nursery as all babies do and was monitored there. Over the next few days, we learned how to feed her properly. She keeps her tongue at the top of her mouth-a common trait of kids with Down syndrome. Feeding can be difficult and time consuming. If you ever ask to feed her and I say no, please don't be offended. It's a learning process and I'm not up for teaching everyone (sorry, I must be blunt). Emily was released after just two days, like a normal baby!
Being home with her is like being home with any other newborn. Eat (slowly), sleep, and poop. There is nothing different about Emily.
Lilly is already her best friend. Our two year old truly understands love. She loves Emily more than we all know. She's the first on hand with a blanket when she thinks she's cold and she's definitely the first to bring a paci when she cries (Lilly has her own love affair with the paci). She is a great big sister. She's patient and concerned all at the same time. She's the first apple of my eye :)
Our weeks are filled with doctor visits and therapy. Many of you want to know all about these visits. We see the cardiologist, pediatrician, and therapist every other week. It's time consuming and tiring. She's worth it though. Her heart looks the same as it did in utero. We have all been wondering when surgery will be and finally have an answer (kinda): April! Emily needs to gain at least 4 more pounds. Her goal is 10 pounds by surgery date and with her current weight gain, April is our targeted month. I don't know when in April. When I do, I'll let you all know. Therapy is in place to help with her weak muscle tone. She's actually quiet strong right now, but over time, that newborn reflex will begin to disappear. I love her therapist. She teaches us ways to help he with the suckle reflex, head control and is there is guide us on milestones Emily needs to reach. The pediatrician is basically there to hear about these other appointments, complete the (enormous!) amount of paperwork we've needed to fill out, and check in on any questions or concerns we have. Every person we've seen has been phenomenal! As for the surgery, we will most likely still have it here in Charleston-even if we're back in Atlanta. We know the doctors here, we like them, and the patient care has been nothing but outstanding.
Speaking of Atlanta, as many of you know, we do already have a house there! It's beautiful and we are so excited to get in it. It's been freshly painted and the girls rooms have their names on the walls already so it's pretty much ready for the beds :) Doing all this alone and going through the roller coaster of emotions without parents, siblings, and other family and friends is so difficult. Our house here in Charleston is currently on the market. We will move when Billy finds another AT&T store that's where he wants to work. Openings come up every few weeks and when the right one comes, the boxes will be packed. We will leave our house here on the market and head home.
Emily is a gem She is nothing short of perfect. She has differences, yes, but she is just like any normal child. Grieving the loss of "perfect" was necessary, it's helped us get to where we are today. Emily is perfect in her own way. There will be challenges along the way, and we're all ready and waiting for them. Life is hectic, but that's only because there's two kids. Not because of Emily and her needs. Our life is almost perfect. It will be perfect when we're in Atlanta.
I'll use this blog to update everyone on Emily's health. Instead of posting short snip-its on Facebook and then answering tons of texts after a post, this will be your go-to guide! I know that I have left out plenty, but this is a lot of info!
Thank you to everyone for your kind words, support, thoughts, and prayers as we continue along this new path of life we've been dealt!
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