The One that Overcomes: Pregnancy/Infant Loss Awareness Day

So, I have to be real honest right off the bat. My first reaction to this day was, I did not want to acknowledge this day.  I don't think I wanted to last year either. And before last year, I didn't know it was a "day".

So I have been feeling a blog has been brewing for a while, but I just wasn't sure what about? Rsv lockdown? Probably that one is coming...but then today comes and I see some posts on Facebook about Pregnancy and Infant Loss Awareness Day and about how at 7pm tonight people should light a candle in remembrance of babies lost. And I thought, yes I do think I want to do that. And then in bible study this morning, I brought up our story as an answer to the question, "Has your own life shown evidence of overcoming the world? " I put yes, in how we were able to have peace in the storm. I explained some of that to the group about how God showed up for us in big ways when we lost our son Titus. And then a sweet friend in the study with me, brought us up in another question on our bible study of "Who do you know with a powerful testimony?" She said Bryan and I, and then gave examples of why. She shared some of our story about how God showed Himself in what we went through. I cried and shared some more, and well, this all happened on today day of all days? Pregnancy and Infant Loss Awareness Day.

So as stubborn as my spirit was about acknowledging this day, it didn't matter. I couldn't mess up God's plans. That same sweet friend dropped off a candle for us and one for all of our best friends so we could light them, and remember at 7pm tonight together. Our home group has lost a total of 5 babies. It was such an incredibly thoughtful thing for her to do. So tonight, we lit our candle with Asher and I told him how we were thankful for his brother Titus, and the two angel babies before him. It was simple, but it was good for my soul. Lately, as I watch Asher do crazy things, cute things, and new things, it's been harder not to wonder what it would have been like to have his brother here too. I mean two blonde, blue-eyed cuties? I just couldn't imagine the craziness that would entail! I don't know why I have wondered more about what life would have been like with Titus here lately, but I have. Now I see God's perfect timing in all of this. Left on my own, to run away with my own thoughts a few more days, weeks, whatever...it would have been easy to fall into bitter or jealous thoughts again about why this happened. Or maybe not even that. Maybe just falling into a state of sneaky discontentment. (I call it sneaky because often, you don't even realize it's there.) Or, maybe just a time of wondering or dreaming about what my life would have looked like with my twin boys. I do think it's okay to wonder. I think it's okay to mourn not having Titus here with Asher. But, I don't think it's okay to dwell in discontentment, which would only brew bitterness and jealousy eventually. The line between healthy mourning and unhealthy discontentment can be very thin sometimes for me about this. So, thank you Lord, for forcing me to reflect today and to say out loud at bible study, through tears, that we do believe You divinely planned the story of how we would become parents. And what I didn't say out loud today, but I remembered, is that You are still, and always were, better that that story I wrote for myself that included full term, healthy twin boys.

In my bible study, we are studying what we call "The Johns".  (1 John, 2 John, 3 John) In 1 John 5: 3, it says "His commandments are not burdensome." In the teaching part of bible study today, it was pointed out that His commands aren't always easy to follow. But they will never be burdensome to the children of God. They will never be too much. So, it's not always easy to say, wrap my mind around, and proclaim that God is indeed better than watching my twin boys grow up together. But it is not burdensome. Why? The next 2 verses lay that out. "And this is the victory that has overcome the world- our faith. Who is it that overcomes the world except the one who believes that Jesus is the Son of God?" So, a burden is a heavy load, or something that weighs you down. Why is believing this about our story not too heavy or something that is too much for me? Because of Jesus. Because believing in Him means I have "overcome the world". Now that is some intense wording.  That sounds like superhero talk-- stick with me a minute. I think "overcome the world" simply means that because of God and His Son, Jesus, the story God chose for Asher and Titus, isn't devastating or too much for us as the world might say it is. It's not so terrible that we can't bear it. It hurts some days, it's refined us like nothing else, but it doesn't crush us. Just like gold is refined through fire, it's not crushed or ruined, but the impurities are burned off. The extra stuff on the gold that takes away from it's value, or hides its value is burned off. That's all I mean by God refining us through this. He burned  (and is still burning) off some pride and idolatry in me that takes away from my value, or doesn't allow Him be seen in my life as much as He could be. His Word says that life with Him and relationship with Him, is always going to be better than anything He can give us. So overcoming the world, is remembering and believing that whole heartedly. That the things that are sometimes valued the most on earth, really aren't as valuable in comparison to knowing, loving, and following God and His son Jesus. (Psalm 63:3)

One thing my friend mentioned today in bible study is how when our friends and family came to see, pray over, and say goodbye to Titus, Bryan was playing the song "10, 000 Reasons" by Matt Redman on repeat. She said she remembering holding Titus, and hearing the words "bless the Lord", and she just felt conflicted because that didn't seem like something to bless the Lord for. Bless means to thank, or feel gratitude for. It was hard, in that moment, holding her best friends' baby who had passed away, to feel thankfulness towards the Lord. That song was one we played many times in our room while I was contracting to try to calm me down and the boys inside me. So, it became their song and has stayed their song ever since. And the words of it have changed for me over time with their meaning. For many months, maybe even a year, I could not sing that song and feel like blessing the Lord. I either felt like crying, or I would feel angry and I would turn the song off in defiance. But, slowly, God has softened my heart and been gracious enough to teach me, and open my eyes to why I can thank Him. Here are a few words from the song:

Whatever may pass, and whatever lies before me
Let me be singing when the evening comes

[Chorus]
Bless the Lord, O my soul
O my soul
Worship His holy name
Sing like never before
O my soul

I'll worship Your holy name

It has taken time, but I have come to sing these words with joy. I have come to a place where I am so thankful to the Lord for all that He gave me in taking away my son Titus, and the two babies we lost before him. He gave me a deeper relationship and dependance on Him. He gave me a deeper understanding of suffering. He gave me moments, gifts, and friendships I will never forget.  All of those things, most importantly a deeper relationship with God,  blessed me more, I believe, than life with Titus on earth would have. And for those things, I will 'sing like never before, and worship His holy name.'

Tonight I rocked my sweet Asher before bed and hummed "Amazing Grace" to him like I have the past several nights recently. And tonight, while I was doing that, tears flowed. I thanked the Lord, again for him. I told the Lord I know how close we were to remembering 4 babies instead of 3 on this day. I thanked the Lord for allowing us to overcome this, and for counting us worthy. 

If you know someone who has lost a baby, tell them you are thinking of them today. Tell them you are praying. Say the baby's name. It will mean so much to them. I promise. 

Summer Fun and Coming Full Circle

Here are some pictures what Asher has been up to!

First, this was such a special moment. A few weeks ago, we decided to take Asher to the end of church, for worship. He had not been to church at all before this! We still won't take him to the nursery until after he's 2. Let me tell you...it was so so sweet to have him there with us. Even just for a short time. And it was especially sweet for him to meet our Pastor and his wife. The weekend Asher and Titus were born, our pastor asked for prayers for Asher and us. He specifically prayed that Asher would run the halls of church one day. I never forgot that part of his prayer, because for me, that was very hard to picture for a long time and especially in the moment he prayed it. At that point, it was still not certain that Asher would survive his extremely premature birth. So, we had to get a picture of Asher walking around, because he was VERY excited to do that! It was so surreal to have him there, and walking all over the place. It was, without a doubt, a full circle moment. What a blessing for our miracle boy to walk around the church that prayed him to this point. I know that the many many prayers said for Asher are the reason he's here. Thank you. 

Here are some other fun moments from this summer !

Meeting a very large dog...and not being scared, even when he barked! 

...and a kitty named Boo  (we have no pets so it was new for Asher) 

Hanging with papa

Meeting a new friend Lucy

Meeting some of great-grandpa's friends

And great-grandpa's wife, Hazel. Asher's great-grandpa came to see him twice in the nicu before he was diagnosed with cancer. He passed away shortly after Asher came home from the hospital. I really wish Asher could have met him now that he's bigger. He would have had so much fun with him. 

Lots of play dates! 

He loves Elim :)

Growing so much from last summer to this summer...

More play dates! 

Being symbolic...walking over the Children's hospital mat (he spent most of his nicu stay in children's)

More fun with friends- nicu/tubie buddy Wyatt

Swimming

He loves to walk on the step

Swimming with friends 

NOT sitting still for the picture 

Wooden spoons are very fun... (for now)

Trying on wedding clothes is NOT fun...

Standing up in the grocery cart and turning around IS fun! There is no seat belt Asher can't get out of. 

Group dinner date with friends! Feeding 4 one yr olds is fun! Luckily there were 3 adults! 

Smiling on the patio 

Big smile after he ate and drank ALL he needed to for dinner. That's right- no tube on that meal! 

Walking dinner off

Sweet boy 

More playing! 

Asher's First Wedding! 

He was one of the ring bearers for Little Robyn and Brandon's wedding! 

Kristi's kids were the flower girl and other ring bearer. So fun! 

Go go go....all the time! 

Papa and Gammers helped to keep A out of trouble and took him home afterwards! YEA! 

He did so good! No crying! 

His ring bearer buddy, Trevin 

Friends Trevin and Adi were in the wedding too! Adi was such a precious flower girl!! 

Lookin good - those are cowboy boots too! The groomsmen all wore cowboy boots. This was quite the ordeal to find, but worth it for the whole look! 

Yay for Gammers! We love her so much! 

And the bride.. beautiful "Little" Robyn! This is one of my old high school bible study girls. So sweet to walk with her from high school to getting married! She was always Little Robyn, and I was Big Robyn...I just didn't want to be called Old Robyn - so that was the name that stuck! Ha. It was a beautiful and sweet wedding we were so blessed to be a part of! 

It's been a busy and fun summer! 

Overwhelmed

Asher started taking steps at the end of June. And now he's taken off! He's gotten so fast! It's been amazing to watch. At just 13 1/2 months corrected our little 1lb miracle boy was walking. We are so thankful for the mercy the Lord continues to pour out on him. And just this week, he finally figured out clapping! For us, many of the milestones we've been hearing about or have been aware of for what seems like forever. That is part of going to therapy so often. We were hyper aware of what kids his corrected age are supposed to be doing. This can be good and bad, but I think mostly bad. ;) I'd like to be a little more naive in that area!  So, every milestone is a big one. We love, love, LOVE seeing him achieve things, and I think we would be just as excited even if he was born on time. But, it's all especially sweet since he spent the first 5 months of his life trying to breathe, and then trying to eat and grow, and all with several set backs along the way. And of course because we really had no idea how his extreme prematurity would affect him. We still don't fully know that. I do have to remind myself from time to time of some of the many lessons we learned in the NICU. One big lesson we learned was to be thankful for where Asher was at that moment, and to not get overwhelmed with what he still needed to accomplish. So, that used to look like thinking about when he would get off O2 support, and when would he get more than 5-10ml at a feeding. Now, it's looking ahead to him talking, drinking more, eating solid foods, etc. But, I know God wants my mind to stay right here, in this moment and just to drink it all in for all it is.  And there is so much beauty to drink in! I was looking back at videos from last summer and I just can't believe my little baby has turned into a big baby. He was so cute and little back then! But, he was also having an awful time with eating/throwing up a ton of his tube feedings. So, when I think of that too, I'm just even more grateful for the time that has passed and all the progress he has made.

He actually graduated from PT (physical therapy) this summer, so that is awesome! And OT still checks in from time to time, but all of our focus really goes to speech (eating) therapy. There he's working on table foods, meats in particular are very hard for him to chew and swallow. He's liking and getting the hang of crackers, and cookies. As he should-- they are GOOD! Fruits, breads, and cheese he does okay with too. It just takes him a while to chew those things, and he doesn't eat very many bites. He usually throws a few, eats a few, throws a few...etc. :) But he IS trying them, and often on his own, so that is GREAT. He's still eating a lot of purees- about 20oz per day! We never would have thought that was possible. We just pray that continues. He drinks anywhere from 1 oz- 4 oz of milk per day from his straw sippy cup and sips on water throughout the day too but it's not much. Maybe 2oz? I just depends. I track so much, I don't always remember how much water he had in a day!

That's about it for Asher- he's just a crazy joy to be around. He makes a mess everywhere he goes, and tries to get into anything he can, ESPECIALLY if it is NOT at toy. Of course! Toys are just made to distract kids from tearing apart the house I think! He's in a wedding in a few weeks and we are so excited about that! I remember the bride asking me last summer if he could and I just couldn't even picture it. I wouldn't have pictured it this good. We are overwhelmed by the Lord's goodness. I pray I can sit in that kind of overwhelmed, and not the kind of overwhelmed that stresses about the future. We got to go to church Sunday (yay for babysitters...we are not ready to expose him to a nursery yet), and we sang these words in one of the songs:

 "You are more, You are more than my words will ever say....You are here, You are here, in Your presence I'm made whole, You are God, You are God,  of all else I'm letting go."

I remember singing that when Asher was in the NICU and what it meant to me to sing those words. I remember the hope in those words, and the peace I found in that moment of singing of letting go of all that we worried about for him.  Those words mean so much more now. The Lord is more than my words can say. I tear up every time I sing it now.

And, one of my favorite songs right now is Bethany Dillion's "Your the Best Song". It's amazing if you haven't heard it. My favorite part is:

"I remember when you were just a heartbeat that I heard..and now our eyes meet, forever.... I'm learning that in the long hard days, there is beauty... Do you know my favorite place to see it? It's when I look at you."

If you haven't heard it, you should download it! It's one of the sweetest mother songs I've heard. And I had a very specific time when I heard Asher's heartbeat everyday...for one month, twice a day I heard his and Titus'. It was sweet reassurance that all was well with them. Our baby boys were just incredible miracles.  I think it's an amazing gift and a miracle experience to have a child.  Do we really stop and think about that? A beating heart inside of you....a whole person the Lord is allowing you to grow and nourish until that perfect day (or not so perfect in our case but still divinely planned) when he or she will come out and begin to shape and mold you more than you imagined. Amazing.

And, Asher's precious face...is my favorite place to see His beauty. Amen!


Ps. I've noticed these videos won't play if you are trying to view them on a phone. 

First steps video....

Then about a month later....

He tried on these boots for the first time, and they are too big, but he still took off! I thought for sure he'd trip over them. It was so funny! 

Update!

Wow! A lot has happened since Mother's Day! This little miracle boy has been keeping me busy. It's much harder to blog these days! So, Asher turned 12mo corrected (16 mo actual) at the end of May, and then Bryan had his first Father's Day at home with Asher. It was a nice day! And then last weekend we had a party for Asher. We celebrated him being home a year from the NICU! Since his birthday is in February, we didn't have a large party then because of the flu/RSV season. So, this was our party to invite everyone that we couldn't invite in February. My heart has been so full these last few months! It's been SO wonderful to be able to take Asher to play with friends, go to the store, and really just about anything normal we missed for the first 14months of his life! What a breath of fresh air that has been. I love getting comments from strangers about him at the store... about how blue his eyes are, how cute he is, or how observant he is. I never got that experience because he didn't go ANYWHERE with me until April/May. So, it's been sweet. A checker at the grocery store the other day asked if he bumped his head and pointed to his IV scar. I told her it was a scar from an IV he had as a baby. She said, "Wow he's a survivor." And then I told her how early he was born and she said,  "Ok, he's really a survivor then!" I love how God doesn't let me quickly forget where we've been, and I love how it doesn't hurt so much to remember that anymore. It still does sometimes, but most of the time I'm just so thankful those days are behind us. And we are BEYOND thankful that Asher is WALKING! He's been cruising on furniture since the beginning of May. Then, he started getting faster and faster with walking along furniture and in the last few weeks, he started taking steps away from things. Then, just in a week, he went from taking some wobbly steps without support to taking off and going "long" distances not holding on to anything! He still looks a bit like a drunken sailor, but I'm sure it won't be long before he's more sturdy! Praise the Lord! He gets all the credit for giving this miracle boy the skills to walk at 13mo corrected. I really didn't expect it to happen until 17-18 mo corrected since he's met most of his milestones on the late end of "normal".

I just can't explain what a breath of fresh air spring/summer has been to us! With all the physical milestones, and getting to be with friends more, having his party...it's been so sweet, and healing.

AND, over a month ago I started letting the amount of puree he was eating "count" towards his calories/volume for the day. At first it was just about 2oz here and there. We started adding oil to beef up the calories in what he ate. Then after seeing what he ate, we then took off some of the volume of the tube feed of formula that always follows what he does orally. He slowly started eating more. In a few days, he was eating 4 oz of puree 3x a day! That's was a HUGE improvement. We then decided to see if he would be consistent with that. He did it consistently for another week. And then another. He's now eating about 15-17oz day of puree! Before we started "counting" it, he would eat about 3-6oz per day total. So, now he's getting a lot less formula through the tube. He's also drinking some whole milk from his sippy cup with a straw! Some days he drinks about 3oz of milk which is BIG for him. We are going to keep working on that! We are working on changing the texture/consistency of the puree's and challenging him with that. We are also trying to give him opportunities to practice his chewing skills with soft crackers, cookies, puffs, cheerios, dried fruit, etc. He's done pretty well with those things also! The challenge with those, is sometimes he struggles to swallow them without triggering his gag reflex, so he then throws up whatever is in his stomach. So, we have to be strategic with when we try that so he doesn't loose the calories he just ate. The more practice he has with different textures, the easier it should get for him to swallow them without gagging.

It has been incredibly encouraging to see him eat so well. His eating has been the most emotional, taxing thing we've had to deal with post-nicu. It's been a roller coaster ride. And it's been hard to remember not to put all my joy in how he does with it, or in anything he does or doesn't do.  That's a lesson I keep learning over and over again! It's tough! Especially when one of the biggest dreams I have for him is for him to ENJOY eating like we do....for him to not throw up frequently (this has been a lot better too actually), and just for him to understand how much he needs. I can't wait for meals/eating to be just a normal part of our day, like it is for anyone else. It will be very refreshing when his feeding schedule and calorie intake doesn't consume so much of my brain, and there isn't so much focus/emphasis on it. But for now, we are thankful for all he's eating. We will see if he keeps it up!

So, we've pretty much just been busy breathing in all the blessings God has graciously given us in Asher. It's been....very nice. He amazes me all the time. I tear up all the time thinking of how I wondered about these moments a year ago. I tear up when I pray with him and thank God for all he's allowing him to do and learn. Thank you for your continued prayers for his eating, development, and protection from respiratory illness.

Climbing, push toy, and drinking from a straw. 

Father's Day 

LOVE this smile! Yes, he has a lot of teeth! I can see/count 12!

Climbing...

More climbing...

Using his new snack cup

Loves it! 

Found him IN the fireplace- TWICE

Swimming for the first time!

Taking a bath like a big boy! 

One Year Home From the Nicu Party 

Walkin shoes...

Fountains at his party- loved them!

Friends!

Former Nicu buddy, loved seeing them together like this.

On the go...

He's getting very hard to hold these days! 

Asher got to meet many of his prayer warriors. 

It was a great day! 

***I can't get the walking video to upload but it is on Facebook! I will keep trying :)