Margaret, Dr. Slovak's nurse, called me today and left a voicemail saying my panorama had returned. WE'RE HAVING A GIRL!
Her name is Lillian Ruth, "Lily" for short. Background on her name, "Lillian" is my nod to my love for Harry Potter without being too weird. For those who have never read the series, Lily was Harry's mom. Also, "Lily" is a symbol of innocence, purity, and beauty. Ruth has many reasons to be a favorite of our's. It's on both sides of our family. Edna Ruth was Nick's paternal grandmother. Addie Ruth was one of my great grandmothers. One of my very best friends is named Hannah Ruth. And Ruth happens to be one of my favorite books of the Bible. Nick loved the name, so Lillian Ruth it is. PLUS, it's adorable to hear Brayden say "Lily Ruth!"
Now, for the unexpected news, Margaret also informed me that the blood work showed that I am extremely high risk for Lily to have Down Syndrome, or trisomy 21. They've already scheduled me a level 2 ultrasound in Plano for Tuesday, September 13th, with a high risk doctor. I'm trying to stay upbeat and be excited about the fact that we're having a little girl. I'm worried about her, but we know God has this. Margaret said just because I'm high risk doesn't necessarily mean she has it. We'll just have to wait and see.
I ran to Treasured Moments here in Pittsburg as soon as I got the call. Jessica Brummel, the owner and a great friend, has been making some adorable little girl rompers. I purchased a black and pink one, she wrapped it up, then I ran home to give it to Nick & Brayden. I got a super cute video of them unwrapping it. Brayden guessed she was a girl. Nick was very excited that we're adding a girl to the family! We sent the video to our parents and siblings to let them know and give them the update about the possibility of T21. They were very uplifting and excited to be adding Lily Ruth to the family.
We posted this picture to Facebook to let the world know that Lily Ruth will be joining our family.
And, we've already started purchasing for little Lily. It' so hard to pass up cute girly things. There is way more to buy for girls than there ever has been for boys.
Tuesday, September 6, 2016 - 14 weeks, 5 days
I had a regular scheduled prenatal appointment today. I had pretty much convinced myself that there was nothing to worry about. So many people get false positives with these blood work tests. However, Dr. Slovak kinda brought me back to the earth today. She is an amazing doctor, and I absolutely love her! She's been there for me for so much, and she doesn't like to beat around the bush. She wants me to be prepared as best as possible, and wants me to know my options.
She came in by herself, sat down, grabbed my hands, and said, "First off, I want to apologize that I wasn't the one to call you. I should have been the one to tell you about the results." There was some confusion, but she knows now, and we've got it all figured out. She's fairly concerned about Lily having Down Syndrome, but she's also confident that, as long as there is nothing wrong with her heart, we will still be able to deliver her in Mt. Pleasant at TRMC if she is diagnosed with T21. Dr. Slovak has only had one other mother come back with high results like this from the Panorama. That mother delivered a Down Syndrome little girl about 5 months ago who has a heart defect in Dallas.
Dr. Slovak told me that Dr. Koster (who I'm seeing on the 13th) will take amazing care of me. I happened to find out that our friend, Holly Self, delivered all of her babies with Dr. Koster. Her first baby was high risk, and she loved Dr. Koster so much that she continued to go to her for her next two.
Next week's ultrasound won't be a 100% diagnosis. The only way to be completely positive is to do an amniocentesis. We'll discuss our options with Dr. Koster next week. She'll look at limb development and thickness of her skull for markers of T21.
Lily's heartbeat was nice and strong at 152 when we listened with the doppler in the office.
Dr. Slovak described to me what our next few months will look like. We'll go to Dr. Koster next week for the level 2. About three to four weeks later, we'll return to her office for another level 2 to see if anything has developed. Three to four weeks after that, we'll go to a pediatric cardiologist in Dallas for a fetal echo to make sure Lily's heart has developed correctly.
I left the appointment more downtrodden than I was going in, but God has this. Nick, our families, and our friends continue to instill in me that this is all in God's hands. If she does have T21, He picked US to be her parents. If she doesn't have it, we'll rejoice that she is healthy! The song "Because He Lives" by Bill Gaither has been one of my favorites for as long as I can remember. But, I vividly remember sitting with Brayden at the church I grew up at and where my parents and sister still attend a few weeks after Bray was born. They sang "Because He Lives," and I cried as I listened to the second verse of the song. That song became one of Brayden's lullabies I like to sing to him. I've been listening to it on repeat since I've heard about the possible diagnosis of Lily being T21. God has this, and loves Lily more than we ever could. He loves us too, and He will take care of us.
"Because He Lives"
God sent His son, they called Him, Jesus;
He came to love, heal and forgive;
He lived and died to buy my pardon,
An empty grave is there to prove my Savior lives!
Because He lives, I can face tomorrow,
Because He lives, all fear is gone,
Because I know He holds the future.
And life is worth the living,
Just because He lives!
How sweet to hold a newborn baby,
And feel the pride and joy he brings;
But greater still the calm assurance,
This child can face uncertain days because He lives.
Because He lives, I can face tomorrow,
Because He lives, all fear is gone,
Because I know He holds the future.
And life is worth the living,
Just because He lives!
And then one day, I'll cross the river,
I'll fight life's final war with pain;
And then as death gives way to victory,
I'll see the lights of glory and I'll know He lives!
Because He lives, I can face tomorrow,
Because He lives, all fear is gone,
Because I know He holds the future.
And life is worth the living,
Just because He lives!
Tuesday, September 13, 2016 - 15 weeks, 5 days
I had my appointment with Dr. Koster today. Nick and I left Pittsburg after dropping Brayden off at daycare and headed to Plano. We got there a little early, so we walked around Willow Bend mall to stretch our legs and get a quick bite to eat. I didn't eat much because I was so nervous! I just wanted to get to this appointment.
All sonogram indicators at this stage show that Lily will not have Down Syndrome, but a sonogram is not 100% conclusive. We were not able to see her heart or kidneys because they're so small. Like I've said, I'd need to do an amniocentesis to be 100%. All the ultrasounds and all the measurements Dr. Koster took shows that Lily looks perfect. Her arms and legs are long, her skull is thin and not thick like they were worried would be if she had Down syndrome, her hands look fully formed, and she is looking good. The only thing she couldn't get a good read on with her heart, and that's because she's only 15 1/2 weeks, and her heart is only about one centimeter big right now. The reason there was concern was that the blood work showed me to have a 91% chance of Lily having T21.
Dr. Koster said Lily weighed in about 5 ounces. Her spine looked perfect and she had plenty of amniotic fluid. Dr. Koster is thinking we might have another big baby on our hands because she kept saying, "She might be taking after her brother."
We have a follow up appointment scheduled for Tuesday, October 11th at 1 PM at Dr. Koster's office again. We'll be able to do more measurements then just to double-check what we checked today.
Right now, we're being "cautiously optimistic," as my sister put it. I'm not going to lie, this past two weeks have been a whirlwind of emotions. I know we're not out of the woods yet, but there is a healthy baby girl growing inside of me. For that, I am very grateful. We're jumping into decorating her nursery and getting ready for her. I'm excited for this pregnancy and to watch her grow!
After the appointment, we headed to eat a good meal since I didn't eat much before hand. Nick suggested The Cheesecake Factory to which I gave a resounding, "YES, please!" As we were driving over, we saw the IKEA. Nick hates IKEA. But, I wanted to look at a cart that I've been thinking about getting for the nursery for a diaper changing station. He agreed to go with me and work up more of an appetite. I ended up not buying the cart, but I did get some wooden spoons for the kitchen, new trivets, and some play food for Brayden. After a fairly quick IKEA trip, we hopped over to eat. It was DELICIOUS. I ate quite a bit (for me), and then finished up with some yummy cheesecake. We got home around 8:00PM and spent time talking with Joe & Melanie and playing with Brayden.
Saturday, September 17, 2016 - 16 weeks, 2 days
Today, Melanie and I went shopping for Lily Ruth! We headed to Tyler and left the boys to look at campers with Joe & Owen. We hit up so many stores, and came home with a boatload of clothes. She's good for at least a week. Haha!
Saturday, October 1, 2016 - 18 weeks, 2 days
Sister came over today. Nick was coming home from a conference, and our goal was to get the backyard ready for Brayden's 3rd birthday party next week. It didn't happen, but we did pick out a wall color for Lily Ruth's room. Can't wait to start painting and getting things ready for her arrival!
Tuesday, October 4, 2016 - 18 weeks, 5 days
I have a lot of friends that are pregnant. There is something in the water here! With my last pregnancy a lot of the same friends were pregnant that go around too. Two of those sweet friends were Kelley Fink and Christi Denney. They're both pregnant again, so we decided to recreate the picture we took last time around. The top picture is from last time, and the bottom was from tonight. It's fun having pregnant friends and baby friends around the same time!
Tuesday, October 11, 2016 - 19 weeks, 5 days
Today was my second level 2 ultrasound with Dr. Koster in Plano. We were nervous about making it because Brayden started running fever yesterday. But, Bibi to the rescue! She came and stayed with him today since he couldn't go to day care. He was practically pushing us out the door, "By Momma! Go see Lily Ruth!"
I had a less peace leaving the doctor's office than last time.
Dr. Koster did find what she thinks is a minuscule hole (VSD) in Lily's heart that she wants us to come visit with the pediatric cardiologist in 4 weeks to have looked at in Dallas. We can either go to their location at Texas Health (where Dr. Koster's office is) or go to the one at Medical City. It's whichever we prefer. She said the size of it might not even need to be treated once she's born, but just for peace of mind for everything, she wants me to see them. We knew there was a big possibility of seeing the pediatric cardiologist anyways, so this doesn't surprise me. There was also a small calcification on her heart, but even normal babies have that. It will go away on it's own before Lily's born.
Lily's kidneys also had some fluid on them, and that is a marker for T21. However, it was still in normal range.
When I asked Dr. Koster what her percent of probability for Lily having Down Syndrome would be now, she originally said 50/50. But after talking through those three markers, she said probably closer to 75%.
Her arms and legs looked good. Her skull was a perfect thickness, and her brain was good as well. She's a little mover! Every time Dr. Koster was about to do a measurement, Lily Ruth would move to where she'd have to find her arm/leg/head again. I had been concerned that I wasn't feeling her a whole lot, but doc said that she's definitely moving. Apparently, her placenta placement is absorbing a lot of her movements.
After all of her measurements, Dr. Koster said that she's in the 73rd percentile at 12 ounces! Looks like we'll probably have another big baby on our hands.
After leaving, I had a melt down in the car. I know God has this, but this worry wart just wants to know. Knowing that I'll have to wait another 20 weeks to find out is daunting to me. I have a regular doctor's appointment scheduled with Dr. Slovak on Thursday, so we're going to discuss our options further with her.
On Sunday, Brayden learned "God's way is perfect!" (complete with hand movements) at Sunday school. He keeps saying it at the most random times, but it's true and the perfect reminder that I need. Whatever way we're going, "God's way is perfect!"
Thursday, October 13, 2016 - 20 weeks
After our appointment with Dr. Slovak today, we've decided to do testing to find out for sure if Lily Ruth has Down syndrome or not. I'm such a planner, and I feel like I want to be as prepared as possible if she does have it. Plus, I want the day of Lily's birth to be a celebration. I don't want anyone disappointed that Lily has Down syndrome if she has it. We've scheduled everything for next Tuesday. We're praying all goes well.
Tuesday, October 18, 2016 - 20 weeks , 5 days
We had our amniocentesis today. Everything went fine. Lily behaved and stayed put the whole time (even though she was a little wiggle worm). The fluid came out clear, and Dr. Koster said that is perfect. It shows that we got no where near placenta, and it also shows that Lily hasn't bled for any reason.
After Dr. Koster finished, she asked, "How are you, momma?" I said, "I think I held my breath the whole time." She said, "You did. You can breathe now!"
So far, I've not had any symptoms. If I do feel any cramping, that's normal. I'm just supposed to take it easy and rest. My parents picked up Brayden when we got home so he wouldn't be climbing all over me this evening. Also, I need a good night's rest. The only thing that's felt out of the ordinary is that I've felt like there is a bruise under my belly button.
Dr. Slovak is going to fit me in in the morning to do another ultrasound to make sure the amniotic fluid has replenished and everything is good.
We may know results as soon as Thursday afternoon, but for sure by Friday. Those will be the preliminary results, and the full fledged results will come back in about a week and a half.
Friday, October 21, 2016 - 21 weeks, 1 day
Yesterday, we got the call from Dr. Koster that our Lily does indeed have Down syndrome. I had the follow up appointment with Dr. Slovak on Wednesday, and the amniotic fluid had replenished no problem. So, we're out of the woods for any complications with that. We decided to go ahead and let the world essentially know that Lily has Down syndrome by posting the note and picture below to our Facebook pages today.
"Did you know that the month of October is Down Syndrome Awareness month? It now holds a place in our hearts that it never has before.
We found out yesterday that our sweet Lillian Ruth has been diagnosed with Down syndrome, or trisomy 21. We've gone through many ultrasounds, trips to a specialist in Dallas, lots of prayers, and ups and downs before we decided to find out for sure through testing.
We're going to be so blessed to be her Momma and Daddy. Brayden Dale is so excited to meet his baby sister, and he keeps asking to "get Lily Ruth out your tummy." God chose us to be her family, and I pray we'll live up to what He has given us.
We have more trips to Dallas planned in the near future to meet with a pediatric cardiologist and get ready for Miss Lily to grace us with her presence.
The news has definitely thrown us on a roller coaster of emotions, so we are still adjusting. We've already started connecting with new friends who have littles with Down syndrome, and they've all informed us we will feel overwhelmed for a time. We ask that you join us in being excited for Lily Ruth's arrival.
We understand that, when you see us, you may not know what to say. We completely get that! We wouldn't know what to say to someone either. but we ask that you don't offer condolences such as, "I'm sorry." We've heard that, over time, those words tend to hurt. Lillian is going to be her own unique person who gives love to everyone. We already love her, and she is being covered in prayers by friends and family both far and near. Please continue to keep us in your prayers as we navigate this new world!
"For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful; I know that full well."
Thursday, November 3, 2016 - 23 weeks
We had an event at the church tonight. Since I was actually dressed up, I had Nick snap a bump picture for me. :)
Thursday, November 10, 2016 - 24 weeks
I had a regular prenatal appointment this morning. Everything sounds good. I'm measuring a week ahead. Her heart rate was good and steady at 148. Lily Ruth was not very cooperative and kept wiggling away from the Doppler.
Dr. Slovak prescribed me a chiropractic appointment. I've got to get that scheduled. Lily is literally being a pain in the butt right now. I think it's a pinched nerve, and it's lasted about two weeks. I was hoping it'd go away on it's own, but it hasn't. So, I'll need to get that taken care of soon.
My next prenatal appointment with her will be a long one. I'll have the glucola test and an ultrasound to measure growth. That'll be in four weeks. Tomorrow is my pediatric cardiologist appointment in Dallas.
Nick & I are headed to Rockwall tonight to stay with our friends, Kathryn & Cole, so we don't have as far to drive tomorrow to make our 9:30AM appointment. We're going to the Dallas Arboretum tonight with them and some more friends, Adam & Collin, for the "12 Days of Christmas at Night" and then out to eat. Nick & I are both excited for some fun time with friends tonight!
Friday, November 11, 2016 - 24 weeks, 1 day
We met with the pediatric cardiologist, Dr. William Laird, today. Lily Ruth's heart defect is worse than we expected. She has an atrioventricular septal defect (or AV canal defect). We don't know whether it's a partial or full, and probably won't know until she's born. She will continue to grow and be fine while in utero. She'll definitely need surgery to repair it, but that could be as early as three months and as far away as a year from her birth depending on how she does after she's born. We'll definitely be delivering in Dallas at Medical City. The doctor said to be expecting a minimum of a five to seven day stay when she's born, and that's if everything is perfect. So, more than likely, her stay will be longer.
We've got another appointment in seven weeks (December 29th). I also have to meet with a program called the AMNI (Advanced Maternal and Newborn Institute) program that will give us tours of everything, get me set up with the OBGYN, coordinate meetings the cardiac surgeon, etc. We'll have to get everything coordinated with both to where we can make just one trip to Dallas for that.
Dr. Laird is quite the artist and drew free hand sketches for us while explaining Lily Ruth' heart defect.
From what Dr. Laird said, AV canal defect is when there is essentially a hole at the intersection of the two walls making up the four chambers of the heart. Partial would be better, but both do require surgery to fix.
I decided to create a page for Lily on Facebook (Loves for Lily Ruth) so our friends and family can keep up with her without having to scroll through our personal Facebook pages. We've received tons of support, and I know prayers are going up for us all over the place.
I'm not going to lie, I'm mad, scared, and asking God, "Why?". I'm mad that we're having to go through this when we've already endured pain and suffering: miscarriage, heart surgery on Nick, stomach surgery on Brayden, etc. So much of that seems minuscule to what we're facing now, but when is enough enough? I'm scared for how everything is going to turn out from labor and delivery to her surgeries. Will she have more problems than just the heart defect? Will she need a feeding tube or G-tube? What are medical costs going to be with something like this? OPEN HEART SURGERY?! Are you freaking kidding me? Why can't she just have Down syndrome? Why are we having to deal with this too? Am I going to be able to continue to work. Just a lot of questions that won't be answered any time soon if ever. A friend of our's recently told us that our relationship with God is much like a relationship with a spouse or friend. Sometimes, we get ticked at them and have to rant and rave, but we always love them and get through the hiccup. I'm in that stage right now. I've never read my Bible as much as I have since the prognosis. Nick & I have prayed more together as a couple than we ever have before. I know God has a plan that we can't see, but my human mind wants to know the plan. I'm sure that I'll have down days and up days. I've had so many people tell me that once she's here, all of the worries will melt away, and we will love her just the way she is. Don't get me wrong, I am already so in love with our daughter, I just wish it wasn't going this way. Pray for us as we got through this journey. It's hard on both Nick and I.
Thursday, November 24th, 2017 - 26 weeks
Today I am 26 weeks pregnant, AND it's Thanksgiving today! I cannot believe we have 14 weeks (or less) left until Lily makes her appearance. I'm way less prepared this go round than with Brayden. I've got a paint color picked for her room and fabrics chosen for her bedding, but nothing else done. I know she'll spend quite a few months in our bedroom, so I know the nursery isn't that big of a deal. But, I would like to have her room finished before she comes. We'll see if that happens after the holidays. I'm excited that I've pretty much gotten over most of the nausea. I still can't eat as much, and some foods make my stomach turn, but I was able to eat a little bit of everything at our Thanksgiving meal today. We're camping in Waco to visit Nick's family. It's been a blast! Brayden has greatly enjoyed our family time, and Lily has enjoyed all the yumminess that we indulge in whilst camping. We're almost to the final stage of our pregnancy! December 1st will be the start of my third trimester. Eek! We have so much to do to plan for Miss Lily's arrival. I'll leave you with a bump picture from today. :)
Saturday, September 17, 2016 - 16 weeks, 2 days
Today, Melanie and I went shopping for Lily Ruth! We headed to Tyler and left the boys to look at campers with Joe & Owen. We hit up so many stores, and came home with a boatload of clothes. She's good for at least a week. Haha!
 |
| Her haul! |
 |
| Melanie bought this, and it's one of my favorites! |
 |
| I bought this one for her. It was on the clearance rack for $4! I don't know if she'll be able to fit in it, but I couldn't pass it up. |
Sister came over today. Nick was coming home from a conference, and our goal was to get the backyard ready for Brayden's 3rd birthday party next week. It didn't happen, but we did pick out a wall color for Lily Ruth's room. Can't wait to start painting and getting things ready for her arrival!
Tuesday, October 4, 2016 - 18 weeks, 5 days
I have a lot of friends that are pregnant. There is something in the water here! With my last pregnancy a lot of the same friends were pregnant that go around too. Two of those sweet friends were Kelley Fink and Christi Denney. They're both pregnant again, so we decided to recreate the picture we took last time around. The top picture is from last time, and the bottom was from tonight. It's fun having pregnant friends and baby friends around the same time!
 |
| Top: 37 weeks, 31 weeks, 28 weeks Bottom: 39 weeks, 19 weeks, 18 weeks |
Today was my second level 2 ultrasound with Dr. Koster in Plano. We were nervous about making it because Brayden started running fever yesterday. But, Bibi to the rescue! She came and stayed with him today since he couldn't go to day care. He was practically pushing us out the door, "By Momma! Go see Lily Ruth!"
I had a less peace leaving the doctor's office than last time.
Dr. Koster did find what she thinks is a minuscule hole (VSD) in Lily's heart that she wants us to come visit with the pediatric cardiologist in 4 weeks to have looked at in Dallas. We can either go to their location at Texas Health (where Dr. Koster's office is) or go to the one at Medical City. It's whichever we prefer. She said the size of it might not even need to be treated once she's born, but just for peace of mind for everything, she wants me to see them. We knew there was a big possibility of seeing the pediatric cardiologist anyways, so this doesn't surprise me. There was also a small calcification on her heart, but even normal babies have that. It will go away on it's own before Lily's born.
Lily's kidneys also had some fluid on them, and that is a marker for T21. However, it was still in normal range.
When I asked Dr. Koster what her percent of probability for Lily having Down Syndrome would be now, she originally said 50/50. But after talking through those three markers, she said probably closer to 75%.
Her arms and legs looked good. Her skull was a perfect thickness, and her brain was good as well. She's a little mover! Every time Dr. Koster was about to do a measurement, Lily Ruth would move to where she'd have to find her arm/leg/head again. I had been concerned that I wasn't feeling her a whole lot, but doc said that she's definitely moving. Apparently, her placenta placement is absorbing a lot of her movements.
After all of her measurements, Dr. Koster said that she's in the 73rd percentile at 12 ounces! Looks like we'll probably have another big baby on our hands.
After leaving, I had a melt down in the car. I know God has this, but this worry wart just wants to know. Knowing that I'll have to wait another 20 weeks to find out is daunting to me. I have a regular doctor's appointment scheduled with Dr. Slovak on Thursday, so we're going to discuss our options further with her.
On Sunday, Brayden learned "God's way is perfect!" (complete with hand movements) at Sunday school. He keeps saying it at the most random times, but it's true and the perfect reminder that I need. Whatever way we're going, "God's way is perfect!"
Thursday, October 13, 2016 - 20 weeks
After our appointment with Dr. Slovak today, we've decided to do testing to find out for sure if Lily Ruth has Down syndrome or not. I'm such a planner, and I feel like I want to be as prepared as possible if she does have it. Plus, I want the day of Lily's birth to be a celebration. I don't want anyone disappointed that Lily has Down syndrome if she has it. We've scheduled everything for next Tuesday. We're praying all goes well.
Tuesday, October 18, 2016 - 20 weeks , 5 days
We had our amniocentesis today. Everything went fine. Lily behaved and stayed put the whole time (even though she was a little wiggle worm). The fluid came out clear, and Dr. Koster said that is perfect. It shows that we got no where near placenta, and it also shows that Lily hasn't bled for any reason.
After Dr. Koster finished, she asked, "How are you, momma?" I said, "I think I held my breath the whole time." She said, "You did. You can breathe now!"
So far, I've not had any symptoms. If I do feel any cramping, that's normal. I'm just supposed to take it easy and rest. My parents picked up Brayden when we got home so he wouldn't be climbing all over me this evening. Also, I need a good night's rest. The only thing that's felt out of the ordinary is that I've felt like there is a bruise under my belly button.
Dr. Slovak is going to fit me in in the morning to do another ultrasound to make sure the amniotic fluid has replenished and everything is good.
We may know results as soon as Thursday afternoon, but for sure by Friday. Those will be the preliminary results, and the full fledged results will come back in about a week and a half.
Friday, October 21, 2016 - 21 weeks, 1 day
Yesterday, we got the call from Dr. Koster that our Lily does indeed have Down syndrome. I had the follow up appointment with Dr. Slovak on Wednesday, and the amniotic fluid had replenished no problem. So, we're out of the woods for any complications with that. We decided to go ahead and let the world essentially know that Lily has Down syndrome by posting the note and picture below to our Facebook pages today.
"Did you know that the month of October is Down Syndrome Awareness month? It now holds a place in our hearts that it never has before.
We found out yesterday that our sweet Lillian Ruth has been diagnosed with Down syndrome, or trisomy 21. We've gone through many ultrasounds, trips to a specialist in Dallas, lots of prayers, and ups and downs before we decided to find out for sure through testing.
We're going to be so blessed to be her Momma and Daddy. Brayden Dale is so excited to meet his baby sister, and he keeps asking to "get Lily Ruth out your tummy." God chose us to be her family, and I pray we'll live up to what He has given us.
We have more trips to Dallas planned in the near future to meet with a pediatric cardiologist and get ready for Miss Lily to grace us with her presence.
The news has definitely thrown us on a roller coaster of emotions, so we are still adjusting. We've already started connecting with new friends who have littles with Down syndrome, and they've all informed us we will feel overwhelmed for a time. We ask that you join us in being excited for Lily Ruth's arrival.
We understand that, when you see us, you may not know what to say. We completely get that! We wouldn't know what to say to someone either. but we ask that you don't offer condolences such as, "I'm sorry." We've heard that, over time, those words tend to hurt. Lillian is going to be her own unique person who gives love to everyone. We already love her, and she is being covered in prayers by friends and family both far and near. Please continue to keep us in your prayers as we navigate this new world!
"For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful; I know that full well."
Psalm 139:13-14"
Thursday, November 3, 2016 - 23 weeks
We had an event at the church tonight. Since I was actually dressed up, I had Nick snap a bump picture for me. :)
Thursday, November 10, 2016 - 24 weeks
I had a regular prenatal appointment this morning. Everything sounds good. I'm measuring a week ahead. Her heart rate was good and steady at 148. Lily Ruth was not very cooperative and kept wiggling away from the Doppler.
Dr. Slovak prescribed me a chiropractic appointment. I've got to get that scheduled. Lily is literally being a pain in the butt right now. I think it's a pinched nerve, and it's lasted about two weeks. I was hoping it'd go away on it's own, but it hasn't. So, I'll need to get that taken care of soon.
My next prenatal appointment with her will be a long one. I'll have the glucola test and an ultrasound to measure growth. That'll be in four weeks. Tomorrow is my pediatric cardiologist appointment in Dallas.
Nick & I are headed to Rockwall tonight to stay with our friends, Kathryn & Cole, so we don't have as far to drive tomorrow to make our 9:30AM appointment. We're going to the Dallas Arboretum tonight with them and some more friends, Adam & Collin, for the "12 Days of Christmas at Night" and then out to eat. Nick & I are both excited for some fun time with friends tonight!
Friday, November 11, 2016 - 24 weeks, 1 day
We met with the pediatric cardiologist, Dr. William Laird, today. Lily Ruth's heart defect is worse than we expected. She has an atrioventricular septal defect (or AV canal defect). We don't know whether it's a partial or full, and probably won't know until she's born. She will continue to grow and be fine while in utero. She'll definitely need surgery to repair it, but that could be as early as three months and as far away as a year from her birth depending on how she does after she's born. We'll definitely be delivering in Dallas at Medical City. The doctor said to be expecting a minimum of a five to seven day stay when she's born, and that's if everything is perfect. So, more than likely, her stay will be longer.
We've got another appointment in seven weeks (December 29th). I also have to meet with a program called the AMNI (Advanced Maternal and Newborn Institute) program that will give us tours of everything, get me set up with the OBGYN, coordinate meetings the cardiac surgeon, etc. We'll have to get everything coordinated with both to where we can make just one trip to Dallas for that.
Dr. Laird is quite the artist and drew free hand sketches for us while explaining Lily Ruth' heart defect.
From what Dr. Laird said, AV canal defect is when there is essentially a hole at the intersection of the two walls making up the four chambers of the heart. Partial would be better, but both do require surgery to fix.
I decided to create a page for Lily on Facebook (Loves for Lily Ruth) so our friends and family can keep up with her without having to scroll through our personal Facebook pages. We've received tons of support, and I know prayers are going up for us all over the place.
I'm not going to lie, I'm mad, scared, and asking God, "Why?". I'm mad that we're having to go through this when we've already endured pain and suffering: miscarriage, heart surgery on Nick, stomach surgery on Brayden, etc. So much of that seems minuscule to what we're facing now, but when is enough enough? I'm scared for how everything is going to turn out from labor and delivery to her surgeries. Will she have more problems than just the heart defect? Will she need a feeding tube or G-tube? What are medical costs going to be with something like this? OPEN HEART SURGERY?! Are you freaking kidding me? Why can't she just have Down syndrome? Why are we having to deal with this too? Am I going to be able to continue to work. Just a lot of questions that won't be answered any time soon if ever. A friend of our's recently told us that our relationship with God is much like a relationship with a spouse or friend. Sometimes, we get ticked at them and have to rant and rave, but we always love them and get through the hiccup. I'm in that stage right now. I've never read my Bible as much as I have since the prognosis. Nick & I have prayed more together as a couple than we ever have before. I know God has a plan that we can't see, but my human mind wants to know the plan. I'm sure that I'll have down days and up days. I've had so many people tell me that once she's here, all of the worries will melt away, and we will love her just the way she is. Don't get me wrong, I am already so in love with our daughter, I just wish it wasn't going this way. Pray for us as we got through this journey. It's hard on both Nick and I.
Thursday, November 24th, 2017 - 26 weeks
Today I am 26 weeks pregnant, AND it's Thanksgiving today! I cannot believe we have 14 weeks (or less) left until Lily makes her appearance. I'm way less prepared this go round than with Brayden. I've got a paint color picked for her room and fabrics chosen for her bedding, but nothing else done. I know she'll spend quite a few months in our bedroom, so I know the nursery isn't that big of a deal. But, I would like to have her room finished before she comes. We'll see if that happens after the holidays. I'm excited that I've pretty much gotten over most of the nausea. I still can't eat as much, and some foods make my stomach turn, but I was able to eat a little bit of everything at our Thanksgiving meal today. We're camping in Waco to visit Nick's family. It's been a blast! Brayden has greatly enjoyed our family time, and Lily has enjoyed all the yumminess that we indulge in whilst camping. We're almost to the final stage of our pregnancy! December 1st will be the start of my third trimester. Eek! We have so much to do to plan for Miss Lily's arrival. I'll leave you with a bump picture from today. :)
