I want to be purposeful about journaling during this time in our lives as we watch our miracle micro preemie, Asher, continue to grow and thrive. I began this blog during my month of bed rest at the hospital while I was pregnant with Asher and his brother Titus. We continue to hope and trust the Lord for Asher's future. This blog begins with the story of how both of our boys came to be. They came about after many tears, many prayers, and many months of crushed hopes. On February 2, 2012, our boys Titus Bauer and Asher Mark were born at just 23 weeks and 2 days gestation. My water around Titus broke at 19 weeks, so his lungs were very underdeveloped. Titus lived 45 minutes and is now living a perfect life in heaven as he watches over his little brother Asher. Two and a half years later God redeemed our story of hurt with a precious full term baby brother for Asher. We are humbled by how the Lord has loved on us in our journey through parenthood.
Asher got to move back to Baylor yesterday! Because his eyes looked good, the doctors at Children's did not think he would need any laser treatment and that made him "well" enough to go back to Baylor. Children's nicu really serves as a critical care nicu, and it's not really a place for a baby who is just feeding and growing. Their philosophy is to fix babies, and then send them back! So, we were VERY thankful that Asher was able to go there and get his PDA fixed, and they helped his lungs improve as well. The day before we left, the medical director told us "it wasn't his heart we were concerned about when he got here..it was his lungs". After surgery he went from the ventilator, to c-pap, to the canula all in about a week! It was a loooong week. Children's also helped Asher get from 1 1/2 lbs to 3 1/2 pounds!! So, we were ready to go back, and just very thankful that he was no longer considered "critical". We have missed our friends at Baylor- there are no nurses quite like them! Here are some video and pictures from moving day!
Getting settled in my traveling isolette
Loving my new big boy bed in Grapevine.
My first night back, one of my favorite nurses did my footprints and handprints again- look how
Asher had his first photo shoot this week! We are so grateful to our new friend, Allison Niccum for blessing us with these precious photos! It was such a treat!
Asher also had his 3rd eye exam. His eyes still have some stage 1 and 2 ROP, but they look better than last week and they seem to be on track to resolving on their own! We are so thankful for this good news! I think I explained ROP on another post..but it is where the growth of the blood vessels in the eye is interrupted due to being born early, and to the oxygen preemies require. And when the vessels begin to grow in a curvy manner instead of straight, that is ROP. If it progresses and gets worse, it can lead to blindness. So, we are thanking the Lord for protecting Asher's eyes!!
Asher will be 35 weeks this coming Tuesday, and about 34 weeks is when babies can start getting and working on their sucking reflex. So, at the end of the week, we started giving Asher "oral stimulation" during his feeds. That means we gave him a paci, and then started to drop milk onto it so he can start to associate the feeling of his full tummy with needing to suck. He also tried a bottle! The first 2 times it really was not something he was in to. It's much bigger than his paci, and so it was stressful for him the first few times. Then, today..he took it and did not get stressed! And he took 10 cc's! That's about 2 teaspoons. It was small amount, but pretty good step. He gets 26 cc's every 3 hours right now. So, he almost took half of that in a bottle! It was a pretty neat moment. I kept watching him and was asking "is he really doing it?" I just couldn't believe he could do it! This will be one of his biggest challenges..learning to eat. It's a lot of coordination for preemies to suck, breathe, and swallow at the same time. It also makes them very tired! So, we will only try a bottle once a day for a while until he gets a little better at it and stronger.
I am just continually becoming so aware, and so blown away at how God perfectly creates babies! I don't think I would have EVER appreciated all that they know how to do if we had not been through this. The fact that most of them come out knowing how to breathe, and how to eat while they do that just is awesome, and it all points to God! The detail with which he creates babies, and how it all works, and how mom's milk is the perfect food..all of it is just so cool. So, we are thankful right now- we've always been thankful, even in the hard moments..but ESPECIALLY grateful and thankful to be in the "grower/feeder" stage as the nurse practitioner put it the other day and not to be so critical anymore. Again, another place I didn't think we'd ever get to! They tell you you will..but it's hard to believe in those hard moments and hard days where you wonder when things will get better.
It's also been so fun to dress him- it really has. And anyone who really KNOWS me, knows that's how I feel- I've always loved outfits and clothes! So, I had to include a picture of him in some "big boy baby" clothes. It's so fun that he can wear clothes now, and that we found some that fit!
We are still praying for his development..his lungs, brain, stomach and of course eyes are some of the big prayer requests right now. He should have his next eye exam this Thursday, and our hope is that he STILL has stage 1 or 2 (or none at all) and it has NOT progressed to stage 3 ROP.
God has been SO good to us, and continues to be. I was reminded today, again, of God's PERFECT plan for our family. His plan was for us to just have Asher right now, although we do miss Titus often. We don't always say that to each other, but I think we both do..especially as Asher hits all these milestones. It's hard not to wonder what it would have been like for Titus to reach them as well. But, I have to remember that Satan wants to convince me that things would have been better that way, and that I'm missing out. And that's NOT truth. I think one prayer of every christian parent is that one day their child will truly live a life that glorifies God and impacts the Kingdom for His name. We can truly say, in his short life, that Titus did that..and may still be. And so, God has blessed us more than I think we fathom or give credit for in that way. And that's true for Asher as well..He's impacting people for the glory of God- how cool is God that He can use a tiny baby to do that?! I pray that that Truth just keeps sinking in further and further in my heart! I'm truly so grateful and just blown away at the story God has started for our family, and I just continually pray for the ability to REMEMBER these Truths and all God has done. I think that's one of the crafty things Satan does is help us forget or distract us from those things we've learned, and from the experiences and the encounters with God that have nourished our souls. He doesn't want us to remember that. I've been trying to be more purposeful about going into each day praying for God's protection over my spirit and heart. It's a battleground in there, and Satan knows it. He will not win this heart over to his lies! So, bottom line- we are just thankful for our story- even when it's hard, it's GOOD. It's more than either of us ever imagined.
Thank you for continued prayers for our little man!
Asher got to wear his first onesie this weekend! And he will be wearing clothes everyday now! We will no longer have our little caveman baby. :) His temperature was getting warm in his isolette with the heat on, so they decided to start dressing and swaddling him and keep the heat off. They are going to see how he does with maintaing his own temperature. He's been doing pretty good so far! Here are some pictures, and a video of us putting it on him. I'm so thankful I had this tiny onesie donated to us! He also has several "nicu" clothes that were given to us and he'll be using those too. Preemie clothes are still pretty big on him, but hopefully not for too long!
Asher had his first big boy bath today! Up until this point..he's just had a "wiping" type bath. So, this was a big day for us! We were so thankful to get to help with this! He did NOT like his bath, but after he got dried off, and had warm lotion rubbed on him, got his paci and mom's finger..he felt much better. After that, he fell asleep on me and was out! Poor guy! He also had a visit from one of his favorite cousins, Rylie.
Asher had his 2nd eye exam today. His exam showed that he has some ROP , which is an eye disease that affects prematurely-born babies. It is caused by disorganized growth of retinal blood vessels which may result in scarring and retinal detachment. Thankfully, his is pretty minor right now and we ask for you to please continue to pray that it either goes away or doesn't become serious. The dr said 80% of the time ROP resolves by itself.
He's also getting really strong and starting to move around a lot! I think he's getting ready to crawl out of the hospital if we don't get him out of there pretty soon! He's only got a couple of more months before he can come home, which sounds like a long time but we hope it will fly by! Thanks for all of your prayers for our little man!
I'm so sorry mom dressed you as a rabbit for your first Easter! I was just so excited to find tiny NICU clothes, and I could not resist. I PROMISE the next time I dress you up, you will be something much cooler and much more tough- just like you!!
On a more serious note... Easter really had me convicted on sacrifices. I realize whatever sacrifices I think I'm making..things I think I'm not getting, it is all nothing in comparison to what was sacrificed for me, and my life. God giving up his Son was the greatest sacrifice, and Jesus submitting to His will...just so I could have eternal life. So I could walk this life with hope, and peace, and have a Guide who never "messes" up the plan. So I could be forgiven again and again and be given grace upon grace each day. It doesn't seem I'm deserving. And I'm not! That's the beauty of it. Thinking upon that, really puts everything in perspective and produces nothing but a grateful heart. What a battle that is..a grateful heart- every day! Lord, help me!
Here's Bryan's post from Easter weekend as well....
Robyn and I just watched Passion of the Christ and I'm humbled again about the pain and suffering Jesus went through to reconcile us to God. ALL of our sins were future sins and He took them all on Himself and forgave us of our trespasses. He paid it ALL and our sins are forgiven. I pray that I can walk in this freedom! I also pray that Asher knows our Risen Lord personally and that he commits his entire life to serving our great King!
Wow, these past 2 months have been full of many ups and downs! We feel so blessed that Asher is doing so well, and has had several calm days in a row. He's been struggling with eating a little. They are trying to watch his reflux or spitting up and make sure he's not spitting up too much. Reflux is common for full term babies and even more common for preemies. The muscle between the esophagus and stomach is very underdeveloped and stays open allowing food to easily go back up. He should eventually out grow this. It's hard to see and hear that he spits up a lot because right now all he needs to do is eat!! But, I will say, I'd rather be talking about spitting up than than about major issues with the heart and lungs. We will continue to pray for him to be able to eat and grow, and also for healthy development of all his organs- especially his eyes, brain, and lungs!
I have had several thoughts about the things that I have felt lately and the information we've learned about how preemies develop. In the past week or so, Asher has had several (and his whole life really) brady's and desat's. A brady is when is heart rate drops pretty low- like down in the 60's and 70's. And desat is when the oxygen level in his blood goes down in an unsafe range. Both of these alarms we have gotten very used to when they go off. However, anytime his heart rate drops, we stop and immediately pray and pay attention. It's not fun to see! But, we've learned a lot about how his little body works. Sometimes his heart rate drops because he's basically really asleep and comfortable and his underdeveloped brain doesn't know yet not to shut everything down..including breathing..when he's really resting or asleep. The nurses often say "well, he just forgot to breathe". Crazy- have you ever even thought about breathing?? Me neither, but for our little guy it's quite the task! It's just amazing me to that when a full term baby comes out, they know how to breath..whether awake or sleeping..and they can do that while they eat! When Asher accomplishes that, he will be like a full term baby! And then also sometimes his heart rate drops because he's spitting up, so it's like choking..and our hearts would do the same if we were choking.
Revelation #1-- So, all of that has stirred in me a lot of thoughts about breathing and the rhythm of breathing when I think about Asher. Asher is still trying to learn how to breathe. He's still learning the rhythm and pattern of it. And when he tries to do his own thing and breathe too often or out of the rhythm God designed for his body, alarms go off, and his whole body is "thrown off". When Asher doesn't do enough, and freezes up, and doesn't breathe..alarms go off then too- and again..he's out of the rhythm God designed the lungs to follow. It's slow process of him getting in sync with the rhythm. And he gets a little better at it everyday, but he still has moments where he gets "off". So, I can't help but compare this to me- to us. When I'm not in sync with God, everything is off. When I try to do too much on my own, and fight His perfect plan and rhythm, "alarms" go off, or it becomes clear to me at some point that things are not right, and I can't do everything myself. When I don't do enough in my relationship with the Lord, and I'm lazy..that's not staying in sync with His rhythm either. And I will see the consequences of that either in my life, or my soul and attitude. When I don't do my part, I begin to see more of everything else, and less of Him. And that never equals joy or happiness.
So, Asher's learning to breathe, in a physical way. And mom is learning too. How to take one breath at a time, one day at a time, and submit to the perfect rhythm God created for creation and for my life..learning to stay in sync with Him is a daily exercise.
"Then the Lord God formed the man of dust from the ground and breathed into his nostrils the breath of life, and the man became a living creature." Genesis 2:7
I pray the Breath of Life is in me, and in Asher!
Revelation #2-- I have struggled lately with accepting and embracing the loss of normalcy in our lives. I think I definitely idolize normalcy and comfortable and "easy". So, I found myself in the last 2 weeks or so being just very frustrated with the lack of "normal" in our lives the last 3 months and just wanting that so much. And part of what took me to that spot was actually looking ahead into the future. I have thought a lot about how I just want Asher to be home, and I just want to live life with him in it. And then, I remembered that he won't get to do what full term babies get to do. He won't get to go with me to friends houses for play dates, or go to church, or go out to eat, or to the store..whatever we are doing in life-- he still won't be out in the world with us. Now I know this is getting several steps ahead, but that's what women do! We get 12 steps ahead in our heads and stress about those future steps. :) This may be a given, but I'll explain. Most likely, because Asher was so premature, dr.'s will tell us it's best for him to not be in contact with very many people (aka germs) until he's older. Sometimes this means until the baby is 2! That was overwhelming me to think of the next 2 years keeping him away from people, and it just flat out makes me sad. I've pictured/dreamed about having a baby for a long time. I've been with my friends a lot while they are out, and people comment about their kids, and I've longed for that myself. So, again, I was having to and will have to continue to swallow more "not normal". And in my heart I was just basically throwing a little temper tantrum at God! I asked him a question. How long will normal elude us? And then I think He asked me one, because this was the very next thought I had...How long will I let the frustration of our lack of normalcy and "easy" define my state of happiness? Ouch. That was a huge conviction. I mean how flimsy is my faith? God has pressed hard on us for 2 1/2 years in the area of having a family..and in that time, there have been about 6 weeks of happy and easy. (When I was 13-18 weeks pregnant...we were still pretty nervous up until 13 weeks.) And so this convicts my faith. I know many men and women in the bible who were hard pressed much longer than us. And it makes me think of this verse:
" We are hard pressed on every side, but NOT crushed; perplexed, but NOT in despair; persecuted, but NOT abandoned; struck down, but NOT destroyed." (2 Corinthians 4:8,9)
So, after going through all those thoughts, to me, it comes down to being thankful for what I have right now. And realizing that I may be hard pressed, but I'm not crushed. I may be perplexed and frustrated at times, but God has not left me in despair. I have been struck down in my heart in many ways these past 3 months, but I am not destroyed. There is such power in those words...in God's words, I love it! And in this experience of "not normal" we have gained SO much to be thankful for that normal would have never given us. Asher will never be a "normal" baby. He will always be my special miracle baby, and he will probably be that to many people. It's special to share a miracle unfolding with so many people--it's so special there aren't always words for it. Would we have gotten that experience with our full term healthy twin boys? No. Are there days where I wish for that instead? Sure. But, God already decided that's not what we needed. He decided this was to be our story instead. So, I have to rest in that. And right now, I have a 2 month old, 2 lb beautiful baby boy to be thankful for! He very well could not be here right now. He could have been taken home to be with the Lord at 19 weeks, or at 23. And God chose not to have him go home yet. And when he comes home to Bryan and I, wow..that will be so sweet and so special, and I just hope in that moment I am filled with thankfulness and not frustration with the continued lack of normalcy that will follow. That frustration should just get smaller and smaller in light of what really matters. I'm praying for that. I'm praying for a grateful heart. I'm praying against my sinful nature that tends to have an insatiable hunger for the next thing, and that nature that takes one blessing and immediately demands more. I'm also praying I stay in sync with the perfect rhythm God created for my life. I can definitely do those things..but only with His grace and mercy!
"Retired" teacher..taught 7 great years at Heritage Elem in Highland Village. Bryan owns his own business in Highland Village, TX. We have an amazing miracle son named Asher that we are so thankful for!