Since I was a little girl, I knew I wanted babies. At least 3 of them. Having 2 sisters was everything (growing up and even more so today) and I wanted my babies to experience the love that comes from siblings. Plus being a momma to my sweet babies has been the biggest blessing and has brought me more joy than I deserve. About 9 months ago, we decided we were ready for #3. I got pregnant fairly quickly with the other 2 and it seemed this would be a good time to have a third before my Lily Bug was all grown up. With that said, IUD came out and we began trying right away. After about 5 months with no luck, I scheduled a visit with my OB – ran blood work, did ultrasound – everything appeared normal, so she said give it 3 more months. One month later I received 2 pink lines, but sadly those didn’t last long, and within a couple days I knew that sweet baby didn’t stick. We gave it 2 more months, still no luck, so returned to my OB. After discussion, she gave me the name of a fertility specialist and I got scheduled with her the following week. But just 2 days after my OB visit, bam! 2 deep pink lines. I was ecstatic but also extremely nervous after the encounter a couple months before. However, as each day passed, I felt a little better, and then days turned into weeks and the confidence grew some more (along with the morning sickness!).  About 2 ½ weeks after finding out (so 6 ½ weeks in), I had a little bit of cramping and spotting, so my doctor had me come in for a blood test to ensure my levels were rising appropriately for some reassurance. Turns out my HCG was actually a bit higher than expected, which then led to an ultrasound to ensure nothing was abnormal (i.e. molar pregnancy). Thankfully, we saw a wittle bitty baby measuring right on schedule, with a solid heartbeat. While that didn’t completely ease my nerves (let’s face it, my pregnancy with Lil had me very much on edge from the first sight of those 2 pink lines), I did feel a bit better. The doctor was not concerned, the spotting and cramping had stopped, the morning sickness was growing, and there was a little heart beating inside me. I could breath a little easier.

My first “real” OB visit was this last Tuesday, April 13^th. Luckily, Trevor was able to attend this one visit (COVID rules) and we anxiously awaited the doctor to come in. We had just seen the heartbeat 3 weeks before, but of course the nerves were still on edge. Ultrasounds were no longer fun and were something I actually dreaded since my 20 week anatomy the pregnancy before. Soon as my OB pulled the screen up, I could tell something was wrong. I had seen that face before with Lily’s many ultrasounds and I knew it wasn’t good news. I could see that sweet baby, and it did look bigger, but where was the flicker? And then it began. That numb feeling of being told to sit up and confirming the news I already knew – no heartbeat could be found. One sweet baby measuring 9 weeks 4 days, but no heartbeat. Doctor assumed it must have happened within the last couple days.

Not going to lie, one of my first thoughts/feelings, was anger. Why would God let this happen? Hadn’t we been through enough with my last pregnancy? It just wasn’t fair. Why me again? Why would he let me feel this gut-wrenching pain that I knew far too well. I loved this baby already so much and I didn’t understand why he would take that away.

I think any momma can relate – soon as you find out you’re pregnant, you start to fall in love. Your whole world shifts. Your day evolves around taking vitamins, making sure you’re eating the right things, taking the right medicine, rubbing the belly butter on, not taking too hot of a bath, not letting you’re 4-year-old karate chop you in the stomach, the list goes on. Your world shifts in an instance and your body and thoughts are consumed with creating plans for this new little life inside you. You start of course wondering if it’s a boy or girl, what names you like (which of course majority husband hates), when their birthday will be and whether that’s a good time for starting school. The smallest things, mommas are already circulating in their heads. You start pinning pictures (privately) of pregnancy announcements, names, and nurseries. Each day the love grows a little more for that little one.

Yet, when pregnancy loss happens, women for some reason are expected to stay quit. Or maybe expected isn’t the right word, but there seems to be this taboo around openly discussing pregnancy loss? I’ve never quit understood it and seems really strange when you stop to think about it. Why hide something that meant so much to you? Why are we only supposed to share in the joy but not in the sorrow? Which I think is why I felt compelled to share our story. I loved this sweet baby with all my heart, and I want the world to know about his or her short 10 weeks. I’m comforted in knowing that he/she is in the arms of Jesus, and what could be greater than that.

One thing God has taught me over the last few years, is how to trust in him even when he says “No”. I don’t understand why he didn’t allow me to keep this baby and probably never will, but I know he has a plan for my life and miraculously showed me through hardships with Lily that his will is far greater than any plan I could create. I have been blown away by the way he has taken my broken moments and turned them into something better than I could imagine. Even when I had faith the size of a mustard seed. And with that, he has shown me he can be trusted, regardless of the outcome. Even if, I can trust in Him. With that said, it doesn’t mean the pain is lessened. Tucking Case into bed Wednesday night, he looked up to me and said “hey, is OUR baby still the size of a wild strawberry”. Sweet boy and been following my pregnancy app with me and he had already named the baby – Rock for boy and Flower for girl. He’s the absolute best and God couldn’t have given me a sweeter boy. That conversation was gut wrenching and while he is too little to fully comprehend my momma heart ached deeply.

After coming home from my D&C yesterday (which we will just say was dreadful), I read a blog from another mom who perfectly described this weird place I’m in. I’m sad and hurting, but also trusting and believing. And finding joy in those 2 perfect babies that I have been given. I know I’ve already been given much more than many get in a lifetime, and for that, I am forever grateful. The mom said this” “Trust and grief and joy form this odd trifecta that ebb and flow on the road after loss. It’s messy and painful and freeing and hard. When God says “no,” I want to trust. When God says “no,” I want to grieve. And when God says “no’” I want to experience Joy again. God is still God in my brokenness. God is still God in my grief.”

So, for other mommas out there that have felt this pain. I see you. I hurt with you. You are not alone. And its okay to be gracefully broken. With God by your side, you will persevere.

I’ll see you on the other side sweet baby. Momma loves you!

Kids are currently still in their pjs (or underwear) and dancing in the kitchen. Lil trying to stand up over and over with that one little crooked tooth grin, and Case doing experiments making a sticky mess. All three of us jamming to Cory Asbury’s new album. And I can’t help but become overwhelmed with gratitude. Goodness I just feel so blessed. I know this year has been so hard on so many but its also been filled with so much JOY. 2018 we were dealing with a scary diagnosis, 2019 a scary surgery, but 2020 – while strange & different, has been filled with so many joyous memories. I’m still in awe of seeing how far we’ve come in the last couple years. A terrified couple, quite honestly, angry at God wondering why he choose a different future for us then we had in envisioned. Now, I can’t imagine any other future. This little girl of ours has given us a piece of heaven on Earth. She just makes life so sweet and so rewarding. These last few weeks getting to see her learn all the new things. All the new words, getting inches closer to walking, I just ooze with pride! Working from home has been stressful at times but I’m going to miss her peeking around the corner of my makeshift office when we go back. It sounds crazy but I now find myself sometimes almost feeling like others are missing out on what we are getting to experience. And then watching Case with her, he was made for this. Not only did God know we needed her, he knew Case needed her too. I’m so stinking proud of him and the little boy he is becoming! His pre-k teacher asked his previous teacher the other day if he really was this sweet and kind all the time. She of course said yes and said they both prayed he would never change! Talk about making a momma proud! And now we’re working on building our dream home (thanks Trev!), close to family, where these precious littles will have lots of space to run and grow! Lord knows I don’t deserve what I have but man am I so appreciative he chose this life for me. He’s been nothing but good to me. Over and over again.  

“Through all of this chaos, you were writing a Symphony”

                                                                           Love, one sappy mom feeling extra blessed this morning

How in the world is baby girl going to be ONE tomorrow?! I’ve been really in my feels these last few weeks, reflecting over this last year. Goodness what a year! I sometimes find myself looking at her and can’t help but tear up. All the heartache, the fear and pain leading up to her birth. The scary unknown of what would be. For the months leading up to delivery day, my phone background displayed Romans 8:18 “The pain you’ve been feeling can’t compare to the JOY that is coming” God sure does keep his promises. This girl is a light in a dark world. She continues to teach me daily and I am a better person because of her. I could go on and on about the wonderful things she has taught me but let’s face it, blogging is a little harder with a 3 and 1 year old these days. So a few takeaways from the year:

1) My God is faithful. Oh, so faithful. When Lily is being precious (as she is often) I can’t help but smile and think “I see what you were doing, God”. Through heart surgery, through fears/worries, through it all…he was and is always there. He is true to his promises.

2) The momma bear in me is fierce. Before Lil got here, I had some ridiculous fears of wondering if I was the right person for her. Would I be able to step up to the plate in the ways I needed? I really wasn’t the advocate type kind. It’s amazing what your children do to you. You learn, you adapt, you fight. You show up in the ways they need, because that’s what Mommas do. We will conquer this world together and I will make sure she lives her best life by doing anything I can.

3) We have the best village in the entire world. No exaggeration, they are best. Last weekend we did the Houston Buddy Walk and had over 70 people join us. Each one of those people (and many more) have been there for us every step of the way. They have prayed for us, cried with us, and now get to share the JOY with us. We are so thankful to have an army behind us on this journey.

4) The Down Syndrome community gives me life. While 99% of these relationships are through Facebook/internet, they mean the world. Those fellow moms get it. We share our deepest fears and celebrate our accomplishments. These women are warriors, just like their children. They restore my faith in humanity. I have really connected with one particular momma so much that Lil and I are jumping on a plane in January to go visit them! Never in a million years could you have told me I was going to go stay with a stranger for the weekend. It’s craziness but just shows what these relationships mean.

5) Case is the best big brother (as I knew he would be). Just yesterday morning he was playing pretend being his cute self as always, fighting the bad guys. I said you better keep them away from your sister and in his cute little voice “I will, I am always going to protect her”. He’s so sweet and oh so smart and Lily is lucky to have him as her protector.

6) People were right. Girls love their daddys. Lily is OBSESSED with Trevor. I can’t wait to see their relationship develop as she gets older. He loves her fiercely and is her biggest cheerleader. He’s our rock and we love him so!

7) Lastly, the Lil is resilient. She is smart, a fighter, stubborn, loves her groceries (remember those blogs, praying she would put on the ounces…God answers prayers lol), and is the pure definition of JOY. She not only lights up our lives, but I’m pretty sure she’s impacted 100s already. I constantly see on FB the same similar comment of “she just makes my day”. She may be small, but her impact is going to be BIG.

With all this said, I’ll never forget one day in College (I’m sure after a beer or two), my cousin Randy asked me what is the one thing you want in life? I remember having to think for a while and then responding, “to be happy” Not sure why that conversation stuck with me, but it did. This year has really brought me back to it on multiple occasions. Cause let’s not lie – the future can still be scary with all the unknowns with Lil. When is she going to walk? When is she going to talk? Will she be able to live on her own? Sometimes I find my thoughts/questions spiraling out of control wondering about the future. And then I stop, and ask myself this question “Are you happy today?” And the answer is Yes. It always seems to be yes. There is comfort in knowing that a year ago or even 6 months ago my fears and worries are now the present and yet my answer is still always yes. If anything, Lily has taught us to live in the here and now and the NOW is beautiful. It’s rewarding, full of love, and if anything, its going too fast. Let’s face it nothing is promised in life. Not even with our typical children. So soak up every day. Each and every minute. Love your loved ones fiercely. Embrace your blessings. And remember even if you can’t see it now, He has a plan. And today I am thankful for that plan.

Happy birthday Lily Bug! You are so loved!

“He performs wonders that cannot be fathomed, miracles that cannot be counted” JOB 5:9

Oh sweet Momma,

It’s been a year since receiving Lily’s diagnosis and oh there so many things I wish I could go back and tell you. How I would give you a huge hug and ensure you how God truly did have this greater plan and just how wonderful this little girl you were growing in your belly was going to be.

Those days you strolled the Target aisles with tears in your eyes looking at all the cute girly stuff – how I wish I would of told you to throw it in the basket. That she needed it just as much as any other little girl did – or maybe even just a little more cause man does she rock some of those outfits that I can’t stop buying now. Or those days you embarrassingly wondered would you still want to show off her pictures or still be that annoying mom constantly posting about their babe – how I wish I could tell you yes, a million times yes. How your office is covered in pictures and how Facebook knows all about Lil as you can’t stop showing her off. That your phone is overloaded with pictures, which you constantly send to family just a little too much. I wish I could look you in the eyes and tell you how beautiful she was going to be. How those almond shaped eyes you were terrified of were now your favorite physical feature about her, so blue and pure that you sometimes just get lost in them. And how she would have this cute right chin dimple that constantly shows when she gives you that big gummy grin.

Or how about those days you were so worried about how long it would take her to reach milestones and how frustrating it was going to be waiting for her to learn to roll, sit, walk. How I wish I could tell you that yes sometimes it can be frustrating and yes sometimes you just wish it came easy to her like any other typical child, but oh the joy you find when she does accomplish these things. How the little things are now big things, and the pride you have when she masters something new. Man, is it incredibly rewarding.

How about those mornings at church where you gripped onto the chair in front of you trying to hold back the tears? Wish I could give you a glimpse of how Sunday mornings look now. How everyone has LOVED her in the nursery and you thought you might have to pry her from the last lady’s hands because she had fallen in love (as most people do) and didn’t want her to leave. And the music you so desperately clinged to? How you heard Elevation Worship “Do it Again” the other day and how the words were so true – you will see Him do it again. How God has been faithful, so, so faithful.

And that heart surgery thing? Wish I could of told you how much of a badass she was going to be. Wish I could of told you that she was going to kill it! That she is strong, so strong, and is pretty much going to succeed your expectations in every way.

And those days you worried about Trev and Case, how were they going to deal with having a special needs daughter/sister. Goodness, is Trev cute with her. Wish I could of told you how she would be his new recliner buddy while they watched the tube and did PT exercises – and how when she did hit those goals, how incredibly proud he was of her. They are pretty darn cute momma. And Case – he just sees her as any other baby. He loves her (most of the time) and is gaining more interest in her every day. He loves to bend down and talk to her and it just melts your heart. How just this morning he asked to feed her breakfast and without prompting was doing “more” in sign language in between bites like Trevor and I do for her. I think you had an idea, but man, he’s going to be the best big brother to her.

I wish I could tell you just how many other people she was going to impact? I know you knew that would be the case, but my goodness, in 7 months she’s touched more people than most do in a lifetime. Her smile is contagious, and the fight in her is something many search for and never find. She’s going to do incredible things. I just know it.

Lastly, I wish I could just tell you about the love you have for her. That unconditional, unexplainable love. How when those fears creep in (as they still do now) you can take one look at her and they melt away. You were right. Yall are going to be okay. Although, I think I would say okay is maybe just a little bit of an understatement.

We are officially 6 weeks post op!! Hooray!! There has literally not been one day since July 13^th that I haven’t thought about surgery day. It has been this dark cloud hovering above us for months now and to have it behind us is an incredible feeling. Surgery literally couldn’t have gone better. It was scary, frustrating, nerve-wracking, gut wrenching, but in the end, the outcome was amazing. Like seriously, this girl is a champ. It was by far the longest week of my life; however, it already feels like such a distant memory.

Surgery day was intense. The hardest thing I’ve had to do was hand my sweet 11-pound baby over to the surgeon team. She was up that morning, smiling, & talking and I felt so helpless. I tried smiling back at her telling her she was going to be just fine but in the inside I was dying. I kissed her sweet little forehead probably a million times and hung unto Trevor trying to hold it together the best I could. It all just seemed so unfair. I wished I could take her place. Her anesthesiologist (a very large, burly man) was sweet as could be and scooped her up with such compassion and confidence and headed off to the OR. Watching her walk away in his arms felt surreal yet I had peace knowing God had her in his hands. I knew it was what had to be done to get our girl to a bigger and brighter future but it didn’t make the ache any less. In those moments I begged God to please wrap his arms around her and keep her safe. It had only been a short 4 months but I couldn’t do life without her.

The remainder of the day was long. Really long. We received updates every couple hours which would always settle my nerves, but as time passed before the next update, the nerves would start to set in again. My stomach was in knots all day long. The second or third update was a message she was officially on the lung & heart machine which was a weird feeling – like knowing your baby girl’s heart was stopped and not beating – what a strange moment to be in. The last and final update was that the procedure was complete and Dr. Heinle (her amazingly, gifted surgeon) would be up shortly. We were taken to a small room to wait on him which literally felt like eternity (it was probably about 45 mins but close to eternity right?!). He eventually arrived and handed over the news – surgery went perfect! Each and every hole was closed, her common valve was separated and made into two, there was minimal leakage, no dialysis was needed for the kidneys (as they had anticipated); it was all wonderful, fantastic, news.

Seeing our girl for the first-time post-surgery was hard. There were so many cords, machines, people coming in and out of the room batting off information above my head. It felt like the twilight zone. The breathing tube was unsettling but she was sleepy and content – you could tell she was chilling with her fairy friends in the rainbows which was reassuring. That evening, my parents sat with her while Trevor and I grabbed some Chipotle downstairs & a celebratory beer. We had made it to the other side and for that we were beyond thankful. I felt like I could finally take a deep breath again.

That second day was probably the hardest. I have two very vivid memories in my head from that day 1) her opening her eyes with the vent still in just starting at me bug eyed as if she wanted me to help her (talk about feeling helpless) and 2) the respiratory therapist beating and suctioning her all day and night to get rid of the gunk that was interfering with her breathing (ask my mom it was a painful sight – I needed a good long cry in the shower after that one). But seriously after that day, she seemed to get better and better. At times you could tell she was in pain, which was extremely hard, but overall the pain was managed well and our nurses, respiratory therapists, doctors were all incredible. Thank God for Texas Children’s! By Friday, we were headed to step down unit and Monday headed home! God is good yall!!

April 16, 2019 will be a day I remember always. Seeing the strength that God has given both her and I during this hard time has been incredible. I couldn’t be more thankful or proud of my girl. She is the real MVP.

Post Op/Recovery

Recovery has been amazingly smooth. We have been on sternum precautions for 6 weeks which are officially over! She is rolling over on her own again so I believe the pain is gone and she starting to work on strengthening her muscles again. I was a bit discouraged as we had been working so hard with PT on neck/head control due to her lower muscle tone (which is normal in babies with DS) but she seems stronger than ever now. I think we’re about to start making some leaps and bounds which is exciting! She is on 3 medications – Lasix (her diuretic she was on since 2 weeks old which has already been dropped to 1x a day) Enalapril (a blood pressure med/ACE inhibitor) and a baby aspirin. We could be on these anywhere from 6 months to a year as her heart recovers from being overworked for so long (it’s quite enlarged but slowly making its way to a normal sized heart). She will most likely always have some leakage from her mitral valve, which is the #1 cause for an additional surgery down the road, but right now her leakage is very minimal and her cardiologist is optimistic that we should be done with surgeries. Her incision/scar is looking better by the day which I hope she will wear proudly every day. It’s just a little proof of how badass she really is.

With all this said, I cannot thank each and every one of you enough for helping us get through this time. I know I have said it before but our prayer warriors are like no other. I would love to know just how many prayers went up that day for our girl because I think it would be a pretty incredible number.

Just a few pictures to just show how incredible this sweet baby girl is…

Day 1 – Surgery Day

Day 2

Day 3

Day 4 – Step down unit that afternoon

Day 5 – Finally got a smile that day 🙂

Day 6 – Easter Sunday

Day 7 – Discharge Day!!

Day 8 – First morning @ home

Joshua 1:9 Be Strong and courageous! Do not be afraid or discouraged for the Lord, Your God, is with you wherever you go!

 

Shortly after receiving Lily’s DS diagnosis, I came across the Down Syndrome Diagnosis Network (DSDN). I cannot say enough good things about this group of women. If anyone understood what I was going through at that time, it was these ladies. They provided insight, empathy, and most of all hope. There are a few different DSDN groups I have joined over the last few months (Pregnancy group, Heart group, Birth group) and each have been amazing support. One thing I loved about the pregnancy group is the moms would always come back once baby arrived and would describe how so many of their fears had been lifted once baby arrived and the JOY they felt. As we crept closer and closer to my due date I held on to these posts praying my experience would be the same once our girl got here. I couldn’t wait to get to the other side.

Lily Carole arrived on November 24, 2018, 4 days before my scheduled c-section and during one of the most epic Aggie games in history (Trevor isn’t going let me forget that but again our girl seems to make her own plans!). Hearing her first cry was one of the most beautiful sounds I’ve ever heard – I couldn’t hold the tears back as I took a depth breath for what felt like the first time in months. They brought her over to me for maybe a couple minutes and then she was off to the NICU. The joy that I felt for those few seconds was then coupled with fear and sadness as I longed to hold our baby girl. Watching my husband, then parents, then sisters get to walk over to the NICU and see her while I laid helplessly in the hospital bed until the next day was extremely hard. Waking up every couple hours trying to pump a milliliter of milk for our girl while I listened to the babies cry in the rooms next door was even harder. And then being discharged 5 days later and leaving our baby girl behind was the hardest. I was desperate to get home to my boy but leaving my girl behind was heartbreaking and one of the hardest things I’ve ever done. Luckily I left her in Nana and Aunt KK’s arms which did alleviate the pain (which our support system continued to do throughout the stay).

Lily ended up being in the NICU for exactly 3 weeks. It was a reallyyy long 3 weeks and now seems like such a blur. Everyone had told us the NICU life is a rollercoaster and they weren’t kidding. One minute you are on a high and the next you can feel back at the bottom. (i.e Hey she finished the last 3 bottles only to find out she has fluid in her lungs and needs diuretics or hey she killed her bottles ALL day to arrive the next morning to find out her white blood count was high). Throw this on top of exhaustion and crazy post-partum hormones it wasn’t easy. With that said, we seriously couldn’t have done it without my parents, sisters, and in-laws. They are incredible. From driving up for midnight and 3am feedings to driving back and forth from Pearland to Crosby to help with Case, they did it all. They rock! The day we got to go home was seriously the best. We were expecting to be in the NICU so much longer than we were and Lily was seriously a rock star through it all. She’s a feisty little thing and I am oh so proud of her for killing everything thrown at her. It was definitely an answered prayer bringing her home.

Anyway, back to my mentioning of the DSDN and the other mothers posts. Oh were they so right! While I will admit I’m not sure my fears and anxiety were lifted right away, once I was able to have my girl in my arms and spend some time with her, I knew we were going to be okay. She was my girl and I would do anything for her. Not that I didn’t already know that before meeting her but actually having her in my arms felt like it lifted some of the unknowns. Or maybe the unknowns just didn’t matter anymore. We would figure it all out together. I now had a sweet little face staring back at me and the love was abundant. It felt so good to be on the other side and to be able to share that joy with the moms that weren’t quite there as I just was.

Since we have been home, Lily has been doing so great! We see her pediatrician once a week to check on weight gain as well as check for any over circulation/heart failure signs. We just visited her cardiologist a couple days ago who was very impressed with how well she is doing. She walked in saying “well she’s doing great!” which was amazing to hear out of her mouth. Lily has been putting on weight like a champ and is now 8 lbs. 9 oz. (born at 6 lbs. 1 oz. and only 6 lbs. 5 oz. when we left the hospital on December 15^th). The recent echos have confirmed the prenatal echos were spot on as far as how many and how large the holes are. The surgeon has quite the work set out for him. She is showing signs of Pulmonary Hypertension (PH) which will result in her team not prolonging surgery too long as it has potential to create permanent damage to the lungs as well as overwork the right side of the heart leading to heart failure. It’s definitely a balance of trying to get her bigger and stronger but also not waiting too long which thankfully we have one of the best cardiologists at the #1 heart hospital in the nation to figure this out for us. I am totally confident she will find the perfect sweet spot (which I am still praying is a couple months away). Dr. Ayers said we could be waiting until she’s 6 months but also could be a month from now – every baby is different and with the PH it can go a lot of different ways. PH can also hang around post-surgery sometimes creating a few complications such as requiring oxygen for a bit so praying for the best case scenario there. But as I’ve been quickly learning its better to take one day at a time then worry about things like that. Especially when they are out of our control and in God’s hands.

At home, Lily overall looks great. She does have beginning signs of heart failure (slight retractions in her belly, heavy breathing at times, oxygen levels in 80s on occasions, etc) but this is all expected. While expected, it also can be very nerve racking! I over analyze her every little move and of course stress about the slightest weird sound and movement she makes. For instance, her oxygen dipped in 70s the other day making her Owlet go off (a pulse ox I bought to supposedly help my anxiety levels) which of course lead to me running over panicked all for her to let out a grown man toot and there went her oxygen right back up! lol. The girl likes keeping me on my toes! We will continue to see her pediatrician intermittently and go back to her cardiologist Feb 27^th assuming her symptoms don’t progress before then. Praying we can continue to make it through this RSV/Flu season untouched. This means basically staying on lockdown and keeping big brother home and away from daycare germs leading to an even more tired momma but whatever we have to do to keep our girl healthy and our family under the same roof!

Above all else, we are just loving being at home and loving on our girl. She is the sweetest. A bit spoiled but she is seriously the best snuggle bunny. She can sleep on my chest for hours which I’m totally okay with (big brother not so much! lol). Case has actually been great with her though – I find him quite often bending down to talk to her while she’s on her play mat and the other day he snuck a big fat kiss right on the lips (which we have totally advised against but I also love how he just couldn’t help himself). He is the first to run and get me when she is crying saying she is sad and needing her paci. He loves his “Willy”. I got my first true smile yesterday while talking to her and it melted my heart. I can’t wait to see her personality grow. She has WILD hair (seriously it’s out of control), has a million expressions, loves the bath and MY bed (not hers near as much), hates the car seat, and is one little tough cookie. She already has so many people wrapped around her finger (especially her Poppy which also melts my heart) and I know she will continue to impact so many as the days go on. She’s our little treasure and we are lucky to call her ours!

Thanks for the continued love, support, and prayers! Love to all!

 

 

 

 

To my best bud,

Last night I laid in bed rubbing your back before bedtime. Listening to your sweet voice and wondering how you got so big so quick. In just a couple short weeks, your little sister will be entering this world. While my fears are numerous and the unknowns are countless, I do know this. You will make the best big brother. The best she could have ever been given. When we received Lily’s DS diagnosis, one of my biggest fears was what all of this meant for your childhood. And even adulthood. How it wasn’t fair to you and I didn’t want your life to be harder because of it. How I wanted you to have a “normal” sibling relationship. While I’ll be the first to admit that I do still have fears, in just a few short months, I’ve come to realize that while the road may be hard or “different” at times, we are being given a gift that so many don’t get. That you, me, and daddy get to see life through a special lens, a lens that I strongly believe will change us for the better.

So for you I hope these things and more…

My hope for you first and foremost is to know how much I love you. Two years and 3 months ago you changed my life in a way I couldn’t even fathom at that time. You bring more joy to my life than I could ever thought possible. You are a light in this world that puts a smile on my face every single day. Your laugh is infectious and you are oh so smart. You amaze me every single day and I can’t soak it in fast enough. When things get hard, don’t forget this. When I have to miss that soccer game because Lily has yet again another doctor’s appointment, remember I’m there in spirit and will be at the next ten cheering you on. When we can’t make that festival because she has another therapy session, remember there is always another bigger and better one out there that we can make. You two will always be my top priorities and I promise to always be the best mom to you that I can be. Even on my worst days, I promise to give you my best.

My hope is that when you see others struggle, you show empathy, because you’ve seen firsthand the struggles your sister has faced. That you show compassion to those that surround you because you know God created each of us special. To celebrate differences rather than be scared of them. To be brave enough to stick up for others when no one else will – to love people, all people.

My hope is that you enjoy even the smallest things in life. You will be given a front row seat of watching your sister work so hard to reach milestones that may come easier to you and others. But with this, you will get to witness the joy that comes when she does accomplish the impossible and I hope you remember that when life seems overwhelming and hard. That you will have a greater appreciation for soaking it all in no matter how small, regardless the difficulties surrounding you. To not let petty unimportant things consume your life but instead take the opportunity to celebrate those things that seem so small because honestly, they usually end up being the most important. Life is precious and goes by so fast.

And lastly, I hope you follow your dreams. Do what makes you happy and always remember you are a child of God that can accomplish whatever your heart desires. To live fearlessly and to embrace the numerous gifts you’ve been given. And remember, you will ALWAYS have me cheering you on…your biggest cheerleader now and forever.

Love, Mom

 

Besides the weekly appointments, this last month we’ve been able to actually prepare for our sweet girl. The nursery is 85% done (pictures to come soon!), we had a perfect shower @ Aunt Penny’s house, and the smell of baby detergent has filled our home on a few different occasions (which is seriously the best smell in the world). A few updates and prayers answered:

• The 3^rd and final echo before Lily arrives went well. No changes seen with the heart – now we just wait and see how she does when she gets here. We have a cardio consult with the chief of surgery November 6^th, but timeline of surgery is still up in the air. Continuing to pray she can make it 2-3 months old and grow as big as possible before surgery is scheduled. We also met with the NICU team to discuss plan of action after delivery, which will be difficult with me having a C-section as I’ll only be able to see our girl for a few minutes before they take her. Hopefully my recovery goes smooth and I can get over to her by that night or early morning – I can’t wait to get my hands on her – it’s been a long time coming! I’m bummed Case won’t be able to meet her until we are discharged (flu restrictions are going to be in full effect in the NICU with zero children visitation) but I know it’s best for our girl and Case will be able to meet her soon enough.
• The 32 week growth scan also went well! She is still on the small side (14^th percentile) estimated at 3 lbs. 14 oz. Our goal was to stay above 10% and stay on her growth curve so we will take it as a win. Next growth check will be @ 36 weeks and we pray she continues to stay at or above this range.

• I started non-stress tests @ 32 weeks, which primarily consisted of monitoring her heart rate ensuring it reacted as anticipated (staying steady when she was chilling and rising when she decided to do some exercises). Within 10 mins, the nurse was happy with her response and we were done! These will continue once a week until she gets here assuming she stays above 10^th percentile and activity is good, otherwise we will increase to at least 2x a week. Praying that doesn’t happen!

After posting the last couple blogs people have mentioned how much they loved following along and also gave them the ability to be specific in their prayers. With that said, I wanted to share my current struggles and prayers as I know there is power in #s

• Please pray baby girl continues to grow on her own little growth curve. When you have cardio telling you they need a big baby for surgery and you have another doctor telling you she’s tiny, it’s extremely stressful. I know there is nothing I can do about it (believe me, I feed her well) but I still constantly worry about her being small. I’m also hoping we make it to Nov 28^th which is her scheduled birthday assuming all goes as planned. The positive 32 week scan definitely made me feel better and praying we get similar news at 36 weeks!
• Lily also continues to have what seems like crazy, strong hiccups (like 10+ times a day). Cardiologist noticed them again on last scan and did another check for a GI obstruction or something that could be causing it but no signs she could see. She said it could possibly just be an irritated diaphragm. Trying to take that as a good sign and move on but it continues to be something that I feel myself worrying about more often than I would like to admit. It’s so hard not to, especially when I have a constant reminder as my belly hiccups up and down throughout the day. My absolute favorite part of my pregnancy with Case was feeling him squirm around but this crazy hiccup movement has really stolen that joy. Rather than letting myself enjoy her kicks and flips, I find myself stressed out over them wondering if they are odd or out of the normal. I hate that and hoping I can get past it over the last few weeks and we have zero findings when she is born.
• Lastly, please pray I get some good sleep over these next 6 weeks. If it’s not hard enough to get good sleep big and pregnant for any momma, this pregnancy has made that even more of a challenge. I seem to do okay during the day as I stay so busy with work, Case, and life in general but night time is when my mind likes to race and I seem to struggle. The 4 bathroom breaks a night turn into long awake sessions where I find myself trying to figure out a NICU stay schedule, how I’m going to juggle Lily’s therapies and work, and wondering what life is going to be like 10 years down the road. Again, all things I know worrying about are going to do zero good but sometimes I don’t win that battle.

With all the above going on, I find myself almost forgetting sometimes that were still being blessed with a sweet, baby girl to snuggle. It’s like your head gets wrapped up in doctor’s appointments, online DS support groups, insurance coverage, pediatrician choices, and therapy research that you forget that a sweet baby is still eventually coming home that will be our girl for a lifetime. So being able to have these good moments these last few weeks have been really nice. The nursery has been extremely therapeutic and a way I’ve been able to enjoy preparing for our girl. I feel like it’s the one thing I can control right now and I want it to be perfect. I spent entirely too much time picking dresser knobs and a light switch but I can’t wait until we are able to bring her home and I get to rock her in that room.

The baby shower was also a ton of fun and a good break from the madness. Not going to lie, I had a little anxiety about it as my emotions have been all over the place but it was a good, solid day. I have an amazing group of women in my life and we were able to celebrate our girl to the fullest. Lily seriously has 130+ bows and the outfits and soft blankets are numerous. My favorite gift was this planner I received to help me keep organized throughout our NICU stay. Throughout the first few months, the calendar was filled with sweet messages, bible verses, and words of encouragement from my family and girlfriends. It was a perfect idea and I look forward to flipping through it on my good and bad days. It will definitely be cherished.

We have six weeks to go (eek!) which I hope to spend snuggling with my big boy as our one on one time is dwindling down. I know he’s going to make the greatest big brother and I can’t wait to see the relationship him and Lily create. I know they are both going to learn so much from each other. Thanks again for all the prayers and support, we love you all!

Where to begin? This last month has been filled with lots of appointments, classes, and more appointments. We’ve been to a follow up echo, OB appointments, Hospitalization of your Newborn classes, and a 28 week growth scan. Few updates since the last blog:

• Heart – All things considering, the follow up echo went fairly well. The fluid around the heart has remained the same (hasn’t increased) which is great news. Lily’s activity was also at what appeared to be a normal level which eased the cardiologist’s concerns about her “hyperactive” movement. We went back through the defects making up the Complete AVSD – there are 4 to 5 moderate to large defects which unfortunately makes the risk of pulmonary hypertension increase. This could cause some issues pre and post-surgery but hard to tell for now. We will have one more echo October 5^th but otherwise it’s a waiting game to see how baby girl does when she gets here. Our cardiologist continued to be amazing and her compassion and understanding definitely made me feel like we were in the best hands possible.
• Classes – We spent the last two Thursday evenings at a class called “Hospitalization of your Newborn”. Didn’t give me the warm and fuzzies like Basic baby 101 training did with Case but it was informative and helped ease some of the unknowns – which I still find is one the scariest parts of all of this. Besides learning the ins and out of the NICU/CVICU, we were able to also meet with other parents that have been in our shoes. While their road to this point wasn’t easy (to say the least), it was encouraging to see their outcomes and positivity when talking about the future. There were also others in the class that moved to Houston specifically to be at TCH – a husband traveling back and forth from Louisiana for work, a military family that had to uproot their other 2 children, a family from Japan with zero family here, another couple expecting twins with one having a pretty serious CHD while the other is perfectly healthy – my heart hurt for each of these families and definitely increased my appreciation for being so close to TCH and having the support system we have here so close. The long NICU stay still terrifies me, especially with Case at home, having a c-section and waiting to see my baby girl for possibly 24 hrs., not being able to nurse, and so much more but knowing she is under the best care of doctors in the world eases some of those fears. I know she will have the best care and outcome right here in H-town.
• Growth Scan – We had a 28 week growth scan yesterday. Growth scans are usually done for babies w/ DS as the placenta also carries the extra chromosome and is known to fail earlier and cord flow can decline not allowing baby to get everything it needs to grow properly. Lily was in the 16^th percentile which isn’t ideal (although babies with Ds do tend to measure on the smaller side). The doctor didn’t seem too concerned as long as she keeps projecting at this rate so I’ll be returning at 32 weeks. Please say a prayer this # doesn’t decline – we need her as big and strong as possible for when it comes time for surgery. We will also start NSTs (non-stress tests) @ 32 weeks which will watch her a little more closely as my pregnancy progresses. Praying Lily (and my placenta) can hang in there until 39 weeks which is when I’m scheduled for my C-section.

With all that said, these last few weeks have been a little easier – more good days than bad and I have finally been able to find some excitement again. After the diagnosis, I couldn’t even look at a bow, girl outfit, or think of planning the nursery without crying or feeling angry. And then I was angry for being angry and it was a vicious cycle. Going from being absolutely thrilled about having a girl to not being able to look at a pink outfit was heartbreaking and frustrating. BUT my registry is now full of bows (too many to count) and my Pinterest board is now on its way to designing a perfect nursery for my baby girl. If we can’t pick out newborn outfits due to NICU stay, you better believe she is going to have a cute new bow/hat every day! And the nursery – it’s ready to be painted in a peachy/pink color which Trevor actually encouraged (it’s literally his least favorite job in the world (next to moving) which just shows how much he’s been pushing me to find this excitement again – gotta love him). And then there is my mom and sisters who are amazing and off to planning a perfect baby shower for our girl!

I know I say it every time but I continue to thank God for still carrying me through the hard days and helping me find joy on the good days. I don’t know how people go through these type of situations without him – he’s definitely been my saving grace! One thing that has helped me tremendously has been listening to music on KSBJ and Amazon music that reminds me where to put my trust and faith when I start feeling overwhelmed. I can hear one song and my anxiety and fear seems to be lifted instantly. So rather than verses and quotes, I leave you with my top playlist lately. If anything, I personally want to be able to look back at these songs a year, 10, 20 years from now and remember how much they helped me through this time.

• Even If – Mercy Me
• Hills and Valleys – Tauren Wells
• It Is Well – Bethal Music
• Different – Micah Tyler
• Confidence – Sanctus Real
• Glimmer in the Dust – Hillsong United
• Gracefully Broken – Matt Redman
• The Breakup Song – Francesca Battistelli
• Do it Again – Elevation Worship

Thanks again for all the encouraging words and prayers. The outpour of love has been insane and the random texts I receive weekly from friends and family mean more than you know. They always seem to come at the most difficult times and I know there is no coincidence in that. Love you all!

Tuesday afternoon we had our fetal echo with the cardiologist. To say the information given was a hard pill to swallow is an understatement. Everything we learned I knew was a possibility through the research and million stories I’ve read, but when you hear the words being spoken about YOUR baby and being described using actual videos of YOUR baby’s heart, it makes it that more real (and that much scarier). I’m still learning all the medical terminology but our diagnosis landed on a Complete AVSD, which will include making at least 3 repairs during OHS – one repairing a large VSD, an ASD, and a Common AV valve (which should technically be two separate valves that should have separated but never did). Again, this is my understanding and I have a lot to learn!

It was a lot to take in. There are still many unknowns such as when surgery will be performed and whether it will require more than one, how long Lily will be in NICU, how her feedings will take place, etc. Dr. Ayers, the cardiologist, (which I loved and am so thankful my cousin was able to get us into) laid it all there – again, hard to swallow, but appreciated the honestly and realistic outlook she gave us. With all that said, we we’re told to go ahead and prepare for a 2-3 month NICU stay, which brought on the large lump in my throat that I couldn’t quite get rid of the last couple of days. My mind and heart quickly turned to Case (my weak spot) knowing the struggles I would encounter with my heart being under two roofs for such a long period of time. We are blessed with the best when it comes to a support system that will be there 24/7 but my heart aches knowing I won’t be able to be there for both my babies at the same time. Knowing my maternity leave and Christmas could be spent dividing my time between a hospital and home isn’t the way I imagined things. To be honest, it just sucks.

BUT on the positive side, we are still being told the success rate is high and ALL defects are manageable and fixable, which I know not all families get. It will be a long road getting there but I can only pray we make it to the other side stronger and more resilient than ever. I know God’s got our sweet Lily in his hands and I take comfort in knowing I don’t have to carry the weight of this alone. Between an amazing husband (have I mentioned how amazing he’s been through this entire thing?!), parents/sisters, family, friends, and God – we’ve got this. I just finished a book by Max Lucado and this passage couldn’t be truer at the moment:

“It is easy to praise God during seasons of wellness. But it was during my greatest distress when I felt the Lord’s presence poured upon me. And it was in those heartbreaking moments I learned to trust this God who provided unimaginable strength during unimaginable pain”

I thank God for carrying me these last few weeks when everything just seemed like too much to bear. For giving me strength I didn’t even know I had. As this book also said, “don’t let the worry of tomorrow steal your joy today”. So today I woke up and decided to choose joy. And what better way to choose joy then starting the day with a donut date with this kid. How can you not be joyful?!

I also love this passage from another book I’ve been reading (yes, I’ve done a lot of reading lately!) by Kelle Hampton. It’s a great reminder to trust God’s plan even when it’s far from what we had envisioned for ourselves.

“It’s incredibly disappointing when our reality contradicts our ideals, but the challenge and beauty of growing older is realizing when our ideals embrace what’s really important in life, our ideals and reality can dwell harmoniously more often than not. Because ideally, I simply want to see good and do good and find good, and in doing so, I want to be happy and I want my family to be happy. And reality? Well, when adversity strikes in whatever mask it’s wearing, it brings with it a greater passion and greater tools to do just that….to find good. To see good. To do good”

Our next big appointment is September 5^th. This will include checking on a small pericardial infusion (a small pocket of fluid near the heart) which we pray remains small and doesn’t grow any larger. Lily was also “hyperactive” during the entire scan which Dr. Ayers found unusual so she will be checking on her activity to ensure no concerns there (we pray we just have a highly active baby that likes to be on the move and is ready to put up a fight!).

As for now, I will take one day at a time and continue to choose joy. I will fix my thoughts on what is true, and honorable, and right, and pure, and lovely, and admirable. I will choose to think about things that are excellent and worthy of praise (Phil 4:8). Even through the storm, it’s really not that hard to find.

Keep the prayers coming my friends!