WHOA....this has been a week.
On Tuesday we headed to the doctor with our little angel for her Synagis shot...and RSV prevention shot that we've been trying to get for her since birth. It's a series of shorts (2 for her) during the flu season that are approximately $3,000 so it was certainly a battle with insurance to get this covered for her. At that visit, Emily also had a weigh-in and revealed to us that she's actually lost some weight. She was 7.7 pounds when we went to the doctor last week and this week she was between 7.4-7.5. She was weighed three times at two different offices. Yikes! Now, I am having to supplement with some high-calorie formula to help her add some meat to her bones. She has been exclusively breast fed since birth so it's hard for me to do that, but it's definitely in her best interest. My good friend, the Medela Pump, will still remain by my side every 3-4 hours though. Hopefully, Emily will hit the 10 pound mark soon.
Because of the slow weight gain, we were referred to a nutritionist and she helped calculate how much formula to give based on the amount of milk Emme (this is what Lilly calls her...and it's beginning to stick!)drinks. Due to the poor weight gain, it DOES NOT look like surgery is going to be in April anymore. She would need to put on three pounds in about 6 weeks...she's put on less than two in 10 weeks...so now things are put on hold.
We also saw the endocrinologist this week to help control her hypothyroidism. She is currently on medicine to help stabilize her thyroid and we will see him weekly for the next month or so until her TSH levels remain the same consistently.
We also added speech therapy to our appointments this week because Emily has been having a really hard time sucking and swallowing efficiently from the bottle. She's taking too long to eat and burning too many calories because she's working so hard. She helped us learn how to count the number of sucks and swallows she should have in a bottle. Feeding her now takes more concentration than ever! We also need to be feeding her every two hours for the weight gain, so I feel like if I'm not tending to Lilly or pumping, I'm definitely feeding! If you ever call me and are sent directly to voicemail, it's because I'm counting her sucks while feeding. No more playing on the phone while feeding....sigh.
I have already made an appointment on March 8th at the Sibley Heart Clinic in Atlanta for Emily to be seen while I'm home next. I suppose it's time to get a move on that and meet new doctors. This is all because OUR HOUSE SOLD!!! YAYAYYYYYYYYY! We are supposed to close April 1st, so the pressure is on to get packed and moved. I am also having to work hard on getting all new paperwork completed for Medicaid in Georgia and meeting all new specialists. My sweet Lilly will be out of daycare for a few months and that worries me because she LOVES going to school. She will go to preschool at Cannon UMC in August, but we will not have anything for a few months. I'm a little worried...sometimes we're like an old married couple and just need some time apart.
Billy also must transfer with AT&T quickly. I think we are both very, very, very stressed with everything right now. It all happened so fast. I knew our house would sell, but it's kind of surreal. I have tears just thinking about leaving all our friends here. I did it when I left Atlanta, so I know I can do it again. We will definitely be back often for beach visits. Plus, Lilly cannot live without her Aunts and her bestie, Elloree.
I hope that next week is quieter...so far we have therapy and endocrinologist. I feel pretty positive I'm forgetting something. I'm going to focus on packing and working on the loan for our new house! Sooooo much to do in so little time.
To our parents:
You better believe that when we get home, we will leave tire marks on the driveway and you with our two kids. We're going into town for a much needed night out. We will return the next day (or longer) once our hangovers subside!! We have not had a night alone since Mexico, and that led us to Emily. Lol!
Friday, February 22, 2013
Tuesday, February 12, 2013
Emily is 2 months old!
Well, it's only Tuesday and what a week it has been! Lots of new information to convey.
We had a really good weekend with Billy being off on Saturday and spent the evening at Mexican with friends. SO much fun. For those of you that know me well, I pumped and dumped at the opportunity for a good time with my "sister". Lilly was such a good girl. She loved having her daddy home on the weekend for a change. Emily was a good girl too, sleeping the whole weekend away. She's still sleeping through the night which is making life much easier. I do suspect though that she will regress with this habit once she has surgery, so we are soaking up all the sleep while we can. Her impending surgery has really been on my mind a lot lately. I'm thinking of the pain meds, leaving her at night, not being able to snuggle, change her easily, and what she's going to look like post surgery. I've read a lot about how alarming it is to see your child in the recovery room. There are roughly 50 tubes connected to them. I hope we're not scared! I've been asking the cardiologist lots of questions. Today Billy said I never gave him a chance to talk before I butted in or asked another question. I guess I've got a lot on my mind...
First off, I can't believe our girl is already two months old! Holy moly times flies. She is still the size of a newborn weighing in at a whopping 7 pounds 7 ounces. She'll forever be a peanut. I like her that way though. So sweet. We've had a few concerns recently regarding her health and we've already had them addressed in our two-day week.
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Yesterday we began our morning at the pediatrician for her two month shots and checkup. Shots always give me anxiety. They're a necessity though (in my eyes). Her weight gain was significant, but not satisfactory. She is up from 6.13 to 7.7 pounds as I said. A lot of weight, but it's only been 11 days since she's seen the doctors last. Don't worry folks, she's still not even on the growth chart, so I won't be bragging about that for a long time! I never got the chance to say Lilly was in the 95th percentile either. I'd have to say the Mehlinger family has little babies. The doctor also checked Emily's thyroid because I have been concerned about the enormous amount of time that she's sleeping. Sometimes 18 hours a day. At 2 months old, we should be playing more and having more playful interaction. Emily can hardly stay awake for more than an hour at a time. Her TSH was at 12, indicating hypothyroidism. This is a direct correlation as to why she has been so lethargic lately. Some would say, "Oh how nice!" but it's really not...I don't get to play with her and when she is awake, she's eating. The pediatrician set us up for an appointment with an Endocrinologist and we see her next Wednesday. We also have a audiology appt to have her hearing rechecked March 5th. Progressive hearing loss is a common trait in children with Down syndrome. Emily may not ever go deaf, but learning sign language will help with her delayed speech and inability to communicate early on. The audiologist will help us understand more about this (I hope).
After those awful shots, Emily got an hour's nap before her therapist arrived...and didn't get much out of her. Many of you have already seen the picture of her on Facebook, but it was hilarious. Poor little thing just laid like a limp rag doll. Speaking of limp, I have definitely started to notice the "talk" of low muscle tone in kids with DS. At two months, Emily should definitely be more sturdy. She still just caves onto your shoulder when holding her. The therapist showed us all kinds of ways to help her gain better head control and muscle tone. We really have to work hard and diligently at this or delays will be more prevalent. As my mom said, the work really begins now. Adding more doctors and appointments and therapies. Oh, this reminds me....we also added Speech therapy this week to help with her suck-swallow reflex. She tends to gag and spit up a lot after feeds...that's Thursday...just another thing to remember. My phone is FULL of reminders! Before this week, we were really just focused on her being a newborn. Now she's needing us more and more for her long-term ability to function properly.
Today we saw the cardiologist. He was so nice, as usual. Dr. Butts (ha!). He's definitely nerdy, but so smart and always, always, always listens to every question I have and answers them all. He asks about the sale of our house, how my mom is, and genuinely cares about us. The care at MUSC has been nothing short of absolutely fantastic. Despite how wonderful he is, he was not pleased with her weight gain. Although Emily has gained, it's not as much as he'd like. Painfully, I took all of my frozen breast milk (all 535 ounces or 4.25 gallons) and thawed out my colostrum milk since it's the most fatty and full of wonderful nutrition. This will definitely help fatten her up. If her weight has not significantly increased by our next visit, March 6th, we will have to see a nutritionist and give her some high calorie formula with my breast milk. Me and the pump have been good buddies for 9 weeks now and I do not intend on quitting, so I hope this little theory of pumping her with fatty milk works (most of you know she never actually took to the breast...so I pump...yes...every 3 hours...). At our next visit, we will discuss the surgery in more detail and he will complete the per-surgical paperwork. We will receive a call later that week to actually schedule it. So nerve-racking!
Emily continues to amaze me (us!). In the beginning of her little life, all I was able to see (and I do believe I speak for Billy too) was Down syndrome. It was still a shock that she was "different" (now I know she's not). I couldn't help but look at her eyes that were slanted and her low ears. However, now, I note daily that when she is awake and alert, her eyes are so beautiful. A beautiful blue. And they're huge. She got that trait from her daddy. She and her sister share big, blue, beautiful eyes like their father.
I'll be back in two weeks with another update! Until then, check FB for my beautiful girls pictures :) Love to you all!
We had a really good weekend with Billy being off on Saturday and spent the evening at Mexican with friends. SO much fun. For those of you that know me well, I pumped and dumped at the opportunity for a good time with my "sister". Lilly was such a good girl. She loved having her daddy home on the weekend for a change. Emily was a good girl too, sleeping the whole weekend away. She's still sleeping through the night which is making life much easier. I do suspect though that she will regress with this habit once she has surgery, so we are soaking up all the sleep while we can. Her impending surgery has really been on my mind a lot lately. I'm thinking of the pain meds, leaving her at night, not being able to snuggle, change her easily, and what she's going to look like post surgery. I've read a lot about how alarming it is to see your child in the recovery room. There are roughly 50 tubes connected to them. I hope we're not scared! I've been asking the cardiologist lots of questions. Today Billy said I never gave him a chance to talk before I butted in or asked another question. I guess I've got a lot on my mind...
First off, I can't believe our girl is already two months old! Holy moly times flies. She is still the size of a newborn weighing in at a whopping 7 pounds 7 ounces. She'll forever be a peanut. I like her that way though. So sweet. We've had a few concerns recently regarding her health and we've already had them addressed in our two-day week.
Yesterday we began our morning at the pediatrician for her two month shots and checkup. Shots always give me anxiety. They're a necessity though (in my eyes). Her weight gain was significant, but not satisfactory. She is up from 6.13 to 7.7 pounds as I said. A lot of weight, but it's only been 11 days since she's seen the doctors last. Don't worry folks, she's still not even on the growth chart, so I won't be bragging about that for a long time! I never got the chance to say Lilly was in the 95th percentile either. I'd have to say the Mehlinger family has little babies. The doctor also checked Emily's thyroid because I have been concerned about the enormous amount of time that she's sleeping. Sometimes 18 hours a day. At 2 months old, we should be playing more and having more playful interaction. Emily can hardly stay awake for more than an hour at a time. Her TSH was at 12, indicating hypothyroidism. This is a direct correlation as to why she has been so lethargic lately. Some would say, "Oh how nice!" but it's really not...I don't get to play with her and when she is awake, she's eating. The pediatrician set us up for an appointment with an Endocrinologist and we see her next Wednesday. We also have a audiology appt to have her hearing rechecked March 5th. Progressive hearing loss is a common trait in children with Down syndrome. Emily may not ever go deaf, but learning sign language will help with her delayed speech and inability to communicate early on. The audiologist will help us understand more about this (I hope).
After those awful shots, Emily got an hour's nap before her therapist arrived...and didn't get much out of her. Many of you have already seen the picture of her on Facebook, but it was hilarious. Poor little thing just laid like a limp rag doll. Speaking of limp, I have definitely started to notice the "talk" of low muscle tone in kids with DS. At two months, Emily should definitely be more sturdy. She still just caves onto your shoulder when holding her. The therapist showed us all kinds of ways to help her gain better head control and muscle tone. We really have to work hard and diligently at this or delays will be more prevalent. As my mom said, the work really begins now. Adding more doctors and appointments and therapies. Oh, this reminds me....we also added Speech therapy this week to help with her suck-swallow reflex. She tends to gag and spit up a lot after feeds...that's Thursday...just another thing to remember. My phone is FULL of reminders! Before this week, we were really just focused on her being a newborn. Now she's needing us more and more for her long-term ability to function properly.
Today we saw the cardiologist. He was so nice, as usual. Dr. Butts (ha!). He's definitely nerdy, but so smart and always, always, always listens to every question I have and answers them all. He asks about the sale of our house, how my mom is, and genuinely cares about us. The care at MUSC has been nothing short of absolutely fantastic. Despite how wonderful he is, he was not pleased with her weight gain. Although Emily has gained, it's not as much as he'd like. Painfully, I took all of my frozen breast milk (all 535 ounces or 4.25 gallons) and thawed out my colostrum milk since it's the most fatty and full of wonderful nutrition. This will definitely help fatten her up. If her weight has not significantly increased by our next visit, March 6th, we will have to see a nutritionist and give her some high calorie formula with my breast milk. Me and the pump have been good buddies for 9 weeks now and I do not intend on quitting, so I hope this little theory of pumping her with fatty milk works (most of you know she never actually took to the breast...so I pump...yes...every 3 hours...). At our next visit, we will discuss the surgery in more detail and he will complete the per-surgical paperwork. We will receive a call later that week to actually schedule it. So nerve-racking!
Emily continues to amaze me (us!). In the beginning of her little life, all I was able to see (and I do believe I speak for Billy too) was Down syndrome. It was still a shock that she was "different" (now I know she's not). I couldn't help but look at her eyes that were slanted and her low ears. However, now, I note daily that when she is awake and alert, her eyes are so beautiful. A beautiful blue. And they're huge. She got that trait from her daddy. She and her sister share big, blue, beautiful eyes like their father.
I'll be back in two weeks with another update! Until then, check FB for my beautiful girls pictures :) Love to you all!
Monday, February 4, 2013
To our dear friends and family,
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!
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.
.JPG)
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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