Waiting Rooms

Today Elliot had another cardiologist appointment and it went really well! She said his heart looks the same as it did during his last echo, which is good. She also said she won't need to see him again for another two months and after that she thinks we can go to seeing her every six months! She took him off of the Lasix too. I'm just still in amazement with how well he is doing. He's gaining weight and reaching all of his milestones on track. He really is a little fighter. We know surgery is on the horizon at some point in the next few years, but how wonderful it is to be able to just enjoy my baby and not have to worry about surgery right now.

Waiting for the echo!

While we were in the waiting room this morning, a little girl with Down syndrome was playing and reading. I couldn't help but watch her and think what was in store for Elliot. Her mom noticed and came right out and said to me, "Your little boy has Down syndrome like my daughter, doesn't he?" I said yes and we got to talking about our babies. This little girl was 12 years old and has been through five (yes, five!) open heart surgeries in her lifetime... all at Texas Children's, all successful. She told me her birth story and I told her Elliot's. She gave me some tips and told me that Elliot was just beautiful.

I've said it before, but Elliot truly brings out the best in people. We now have this instant connection with all these families that have children with DS. There's no awkwardness. There's no big elephant. There's only love for your children and mutual respect for your respective journeys. It's so wonderful to have that bond with other families, but I can't help but think how rich life would be if we all acted this way. If we all struck up conversations in waiting rooms and prayed over strangers' children... how beautiful life would be. Having Elliot really has taught me so much about prayer, relationships and hearts (both figurative and literal). Next time you're at the doctor's office, don't be afraid to talk to the stranger next to you... you never know who you might meet, whose day you might brighten or what they might need prayer for!

21 Things

OK, I totally stole this from another mom, but I loved the idea! In honor of Down Syndrome Awareness Month, here is a list of 21 things I love about Elliot. See what she did there with the 21st chromosome? Cute idea, right? You can see her list here... she has an awesome blog!

Here it goes in no particular order:

1. His little nose! It's the same nose Adele has, their dad's nose and I love it!

2. He is such a fighter. I think back to when I was still pregnant with him and the doctors kept saying his heart rate was going to dip and it never did! And, obviously, we can't forget how he spent six long weeks in the NICU. I can't wait to see what else this kid overcomes in his lifetime!

3. I love his babbles. So flippin' cute.

4. This is a weird one - but this kid toots like a grown man. It's hilarious. Justin and I can't help but laugh when he does it!

5. He watches his sister constantly. His eyes just follow her wherever she goes.

6. He's so alert. I remember Adele would instantly fall asleep on car rides or walks at this age, but not Elliot. He loves to check out the scenery and I love watching him already starting to explore the world around him.

7. He's a show-off. He loves to show people his new tricks like rolling over or babbling. He makes me one proud mom!

8. I love his tiny little fingers and toes. His pinkies are crooked and he has larger spaces separating his big toes from the others. These are beautiful reminders of God's plan for him and I wouldn't have them another way.

9. I love how he seems to listen in church. Because of his heart condition, we aren't supposed to leave him in the nursery yet, so he sits with us every Sunday. He's usually wide-eyed through the whole service. His babbles slip sometimes, but I don't think our neighbors mind much :)

10. Have you seen his big blue eyes? Again, just like his sister's. I'm convinced the color comes from my grandmother who I miss every day. When I look in to Elliot's eyes (and Adele's for that matter) I can almost still feel her presence with me.

11. He sleeps through the night consistently. We put him down at 11 pm and he wakes up around 7 am... smiling I might add. Hallelujah. I paid my dues with Adele.

12. He's so chill and normally happy as a clam. (Side note: Why is this a saying? Are clams really that happy?) Nothing bothers this kid except being hungry... he will put his mean face on when he's hungry.

13. He's a fast learner. He still struggles eating sometimes, but he's getting better every day! He's also starting to hold his head up more and more.

14. I swear he's already puckering his lips when I go to kiss him. He just loves his mommy, I guess.

15. Every morning when he wakes up, he has completely turned himself around in his crib and in a swaddle nonetheless.... my little sleep scooter.

16. I love how when I feed him a bottle he holds my thumb. Every time. I can barely stand how cute this is!

17. He looks great in green. Sic 'em Bears!

18. It warms my heart to watch Adele be a "mother" to him. When he cries, she wants to soothe him. She runs ahead of me to pick out his clothes in the morning. What a beautiful relationship already forming between them.

19. His face when he sleeps is adorable. He smirks. He sticks his tongue out. I could stare at him forever when he sleeps!

20. His baby breath. If I could bottle up his baby breath and keep it forever, I would.

21. Elliot brings out the best in people. When we first found out Elliot had Down syndrome, we were shocked. We grieved. We needlessly fretted. We were consumed by fear for a few hours, then all of those feelings soon faded as so many reached out to us. We were loved on by friends, family, neighbors, coworkers, our medical team and even people we haven't spoken to in years. We were also welcomed in to a new community of families. I have been in awe of what this little boy has done to people's hearts in just 3.5 months.

In closing, many of you may have seen a recent article by a woman who wishes she could have aborted her son with Down syndrome. That makes my heart hurt. I want women to see how wrong that woman is... how wonderful and beautiful and "normal" (I say normal because the woman in the article longed for a "normal" family) life with a child with Down syndrome is. So please share this post! I deeply want women receiving a prenatal diagnosis to hear from moms who love their children with all of their hearts... not from Negative Nancies!

It's Down Syndrome Awareness Month!

Move over pink, October is also Down Syndrome Awareness Month! Just kidding, don't move over pink, but please share the aisle... there's enough love in our hearts to celebrate both! Now as a mother of a precious baby with Down syndrome, I want so badly to spread the word about Down syndrome mainly because I realize how much I didn't know about it until I became Elliot's mom.

You've got to be kidding me with these cheeks?!?! 

Before Elliot, I knew nothing about Down syndrome. All I could think of was this little girl at my elementary school that would run out of her classroom when the teachers weren't looking. As mentioned in Elliot's birth story, I was terrified. Some days I still am, but not of him. I'm more scared of Elliot growing up in a world that doesn't understand how amazing he is because trust me I can already tell he is one awesome little dude! I read stories of kids being kicked out of gymnastics because they can't keep up or adults losing their jobs because they had to have a job coach help them (I'm looking at you Papa John's). It's all so hard to hear while looking down at this little boy that I see as absolute perfection.

I want the world to see that God doesn't measure success the way we do and he does not make mistakes. Elliot is here for a purpose and I believe that purpose is to open hearts around him to help spread the word that children and adults with Down syndrome are not scary... they can do many (if not all) of the things typical people can do as long as we allow them the time and support they need to get there.

As I've already said, I'm guilty too. There are two recent encounters of children with Down syndrome that stick out boldly in my mind and neither of them put me in a good light. Last summer I was perusing the aisles in Target (shocker) and there was a mom with her two daughters in front of me. One of the girls had Down syndrome. She was just hanging out in the aisle with her mom and sister looking at earrings. I remember thinking to myself, "that poor woman." I also felt a fear creep into me. Justin and I had just started trying for another baby, and it hit me at that moment that no one is immune from having a child with Down syndrome. I bet if that woman could have read my mind she would have said, "You're the poor woman!" And she would have been right.

The next memory is we were touring day cares when we moved to Atascocita and when we visited one, there was this little boy in the two-year-old class running around throwing toys at all the other kids. He also had Down syndrome and my shameful thought this time was, "How is he allowed to be in here? Doesn't he need a more special environment?" If I could go back in time and slap myself in the face, I totally would. For one, now that Adele is a full-fledged two-year-old, I realize every kid runs around and throws toys. Also, that little boy was exactly where he needed to be... with peers his own age being challenged in his development!

Can you believe I thought these things? I'm so embarrassed to admit them, but it makes me think that as a Christian, an educator, a college degree holder, a loving wife and mother that if I can think these things, that most likely A LOT of people would have these same thoughts and we have to change that. There's no room in this world for this kind of fear. There's much bigger issues to be afraid of.

I have no idea why these instances are so vivid in my memory. Maybe God made them bright spots so that when Elliot was born I could remember how "normal" these little kids lives were hanging out with mom at Target and participating at day care, which meant their moms' lives were also "normal" shopping with her daughters and keeping a day job.

So, this month, I urge you that when you see someone with Down syndrome out and about don't be fearful. Don't feel sorry for their parents. Just smile and recognize them for who they are... a person first who God so dearly loves.

Our New Normal

Can you believe it's been more than a month that Elliot has been home? The NICU has already become a distant memory to us and we couldn't be more thankful for that!

Some of our first moments at home as a family of four :)

The first few weeks home have been amazing. I cannot emphasize enough how good a baby Elliot is. He only cries when he's hungry and sleeps really well at night. I can remember walking around the entire house at 3 a.m. when Adele was a newborn begging God to make her fall asleep, lol. Not the case with our little E. We can just lay him down and he's out!

Adele also adores her little brother and I'm pretty sure the feeling is mutual. Our biggest problem with her is that she kisses and hugs him too much. We're so thankful that Elliot is already being covered in love by his big sister... something we've dreamed about since we found out we were expecting Baby #2.

Developmentally wise, Elliot is doing great! He is delayed in a few things as to be expected since he was six weeks premature on top of the Down syndrome, but overall he's looking really good our pediatrician says. This morning was actually our first appointment with Early Child Intervention. An occupational therapist came out to assess him and she said he's already doing some encouraging things. She said his muscle tone is good and he's very aware of everything around him. She set some goals for us to work on over the next few months like better head control and bringing his hands to his bottle. We'll meet with them twice a month for the foreseeable future. It was very exciting to meet them and get our little man started on his therapies!

Rachel Robinson, the occupational therapist,
and Maria Hernandez with ECI came out
today to assess Elliot!

Other than that, we meet with the cardiologist on Oct. 6 and we're hoping to get more answers concerning the open heart surgery he will need to have. We ended up switching cardiologists because we weren't crazy about the one Woman's set us up... we've been blessed with meeting another family who loves the Lord and has a precious baby girl with Down syndrome just two months older than Elliot. They are the ones that recommended the new cardiologist we are seeing since their little girl has the same heart defect that E has. We are very hopeful we're going to love this new doctor and finally get the information we need!

I'm also adjusting to life as a stay-at-home mom (something I never thought I'd be). I'm enjoying it a lot more than I thought I would. I'm getting to know Adele on such a different level than before and I'm loving it... it makes me regret not staying home sooner! She's such a fun kid and is growing up waaaay too fast. I do really miss my yearbook kids though... like I really miss them. I actually think about them a lot and wonder if they are adjusting to the new adviser well. I pray that the new adviser realizes how amazing those kids are and works hard to tap that potential deep in them. I said to Justin that even though I'm at peace with my decision to stay home, I wonder why God would give me such a seemingly perfect job just to have me walk away from it. Then Justin, always the voice of reason, said to me, "Maybe it wasn't about you. Maybe God wanted you there for those specific students you had. There's no telling what you sparked inside them." So, that's what I'm clinging to... it's all a part of the grander plan!

While we are on the topic of His grander plan... can I just say, "Wow!" I've never felt the presence of God in my life more than I do these days. I've always been a believer, but I cannot explain what Elliot's birth has done to my heart. Elliot has already made me a better person and I have God to thank for that! Justin and I talk about how it feels like we have time to stop and smell the roses. Suddenly it's not all about making sure our kids bring home straight As, having the best lawn in the cul-de-sac or being the first in line for an iPhone 6. Now all I truly want is for my kids to be loved and encouraged. I want them both to fall head over heels in love with Jesus so badly that they want to spread that love to others. I want to look back at the end of my life and know that I made a true difference in their lives. I'm not saying I don't want an iPhone 6 (because I totally do), but that's not what life is about. I mean, everyone knows that... but how often do we truly live that? How often do we truly live out God's desire for our lives? I know that in some ways I do, but then I peruse Pinterest and that need for the perfect house, the perfect outfit and the perfect kids win out.

I pray that God continues to work on my heart so that my priorities stay in line with his plan for my life. I thank God so much for choosing me to be Elliot's mom... I'm already a better person because of him and I know that E's going to do great things. I can't wait to see how God uses him and our family to encourage other in their journey... maybe even YOU (yes, you!)

The Finish Line?

Dare I risk announcing the doctors think Elliot will be home tomorrow???

They've been saying for about two weeks now that it would be very soon, but we kept having setback after setback that would push us back another day. We thought for sure after he pulled his feeding tube out two weeks ago he'd be home, but then he lost weight.

Then last Friday we thought Saturday would be the day, but then his heart rate dropped during a feeding. Apparently there is a 5-day rule once that happens, which makes tomorrow the day. We have been praying nonstop that we are at the finish line.

Dr. Munoz seemed very positive when we saw him earlier today, so we are very hopeful that as of this time tomorrow Elliot will be free of all the wires, have finally seen the sun and be loved on in his own home. Please pray with us for Elliot's continued health and happy homecoming!

In other news, it has been a while since I've posted, so there is a lot to catch up on. Elliot is now 6 pounds, 5 ounces and is really starting to fill out! His cheeks just kill me they are so cute... reminds me so much of Adele when she was first born. He's also extremely alert! He just follows you around the room with his eyes. He's so curious. I can't imagine how bored he must be staring at the same walls all day!

He also passed his second hearing screening! He failed his first one, so we were nervous he might have some issues with his hearing as can be common for children with Down syndrome. Praise God he passed the second one making this no longer a concern.

Since I've last posted we received more information about the AV canal defect in his heart. He will eventually have to have open heart surgery to correct this defect. Luckily, this defect is not presenting any major issues at this point, but the cardiologist will continue to monitor it as he grows. We've read that overwhelming this surgery is done before six months of life, so we know this is on the horizon.

Other than that, Elliot is doing so well. Over the past six weeks, we have experienced such a range of emotions, but overwhelmingly, we have experienced such joy in navigating this new world. Elliot is our perfect boy - the boy we have prayed over since the moment I found out I was pregnant. We are just so excited to get home and really start this incredible journey in raising him!

Again, thank you for your prayers, messages and support. We really do appreciate it! Here's a pic from this past week of our little diva being a great big sister!

Making Progress

Last week was a big week for Elliot! He hit the 5-pound mark and weighs five pounds, three ounces - a pound above his birth weight. He also was moved out of his isolette and has been regulating his own body temperature for five days now with no problems. So those are two HUGE praises.

The only hurdle left is eating. Little guy is working hard on his feedings. He starts every bottle now and finishes about half of them, which is a huge improvement. As soon as he starts finishing all of them, we'll be able to bring him home. How sweet that day will be!

As much as I love and appreciate the doctors and nurses at Woman's, I'm so ready not to see that place every day! It's been a crazy summer for sure and I can't wait to get back to some sort of normalcy.

Whenever I visit Elliot, there is always some quiet time where somehow all of the other babies stop crying, the beeping machines seem to go into a lull and the nurses give us some space. I use this time to pray over my boy. The prayer is always about the same and it covers his mind, body and heart. It's not all that different from what I pray for Adele, but obviously there are some pointed differences. I would love to share with y'all what's on my mind when I say this prayer every day.

• Mind: I pray that somehow, some way he will not be held back academically. I am not naive. I realize the chances of him going to college and becoming a degreed professional are extremely slim, but I do pray that we find resources that will help him keep up with and excel in his schoolwork within his abilities. I pray that he can be ready for mainstream kindergarten with minimal aids and down the line is able to hold a steady job where he can feel successful, fulfilled and independent. 
• Body: I pray that he develops physically. I've read a lot of information on how long it takes for Down syndrome children to sit up, crawl and walk. It breaks my heart to know that many of his little friends will be running circles around him while he might still be struggling to sit up. I will accept whatever comes our way, but I do pray that we are sent physical therapists that will help us help him achieve his milestones at the front end of the statistics that I've seen.
• Heart: More so  than what I've prayed for his mind and body, I pray that Elliot's life is full of love. I pray that Justin and I cover him with love every day. I pray that our love for Christ shines through us to him and encourages him to build a personal relationship with Jesus. I pray that the love of Christ fills his heart completely and that he will fully understand what this love means. And though I realize through the scriptures that not everyone is meant to marry, I do pray that (one day far from now) he finds a special girl one day that will love him for who he is and vice-versa. And, if that girl is out there somewhere I pray all of these things for her heart too. 

I pray about a lot of other things too for both Adele and Elliot, but what's listed above is usually what I focus on. I have come to treasure this quiet time in the NICU when it's just the two of us and I can just pour out my heart over him. In a way I might actually miss it and will probably always look back fondly on this prayer time once he's home.

Whatever My Lot

I have a confession. I was scared to go to church tonight. Justin called on his way home from work and said he really wanted us to go. I just now have started feeling up to walking around, but I immediately began searching my brain for excuses. We'll have to rush through dinner. I was on my feet a lot today. My c-section incision still really hurts. But, the truth of it was that I was terrified of being hugged, having my shoulder patted or anything of the like that would make me melt into a ball of tears. Yes, the normally bubbly, peppy Melinda was frightened of being loved on.

Ultimately, Justin convinced me to go. As soon as we walked into the lobby people were so happy to see us and I admittedly also was happy to see everyone. I was hugged and I did not crumble. I somehow managed to stay strong through all of the questions and checking Adele into the childcare.

However, as we took our seats, they started singing "It Is Well With My Soul." Now, on a normal day this song would get me weepy, so today it really hit me. In that moment, I felt like I could have written that song (if I had that kind of musical talent). I hope that "whatever my lot," I can always reflect the lyrics of that hymn.

So, despite the minor breakdown during worship, church was a good decision and I'm glad Justin pushed me to go. It really was nice seeing everyone and being reminded of how loved Elliot already is! It was also so fun to see Adele running around with some of the other girls after the service... that child is such a bright spot. I can't tell you much I missed her while I was in the hospital.

In other news, Elliot is doing really well! I posted a couple of my favorite shots from this week up top. He's really such a cutie. He's gained a total of four ounces since birth so he's up to 4 pounds, 7 ounces - I'm convinced at least two of those pounds are from those cheeks! Check those out - reminds me so much of his big sister. They've also been able turn down the temperature in his isolette, which means he's getting better at regulating his temp on his own. Feeding still remains his biggest challenge. He's not really showing any consistency in how much milk he takes and rarely finishes a bottle, which means he gets the remainder through a tube. The doctors keep assuring us that he's progressing well and reminding us to be patient.... that he'll be home before we know it! What a great day that will be!

Also, Justin and I just want to say thanks for the outpouring of love, encouragement and prayers we have received since Elliot's birthday. Even though we knew we wanted to be totally transparent with Elliot's birth story, we honestly did not know how people would react to our news and my candidness about the experience. But, of course, God is great and it is clear that he has surrounded us with wonderful, supportive people throughout our lives. We've both been so humbled by the phone calls, texts and Facebook messages from everyone... including people we may not have spoken to in years! We really do appreciate it all and thank you from the bottom of our hearts!