A Conversation With Asher

Asher has been exploring spitting for a few weeks now. It's so cute! I know I won't always think that. ;) But I just had to share. I love watching his expressions! I can just imagine what will come out of his mouth with those expressions one day. If you know his daddy, you know what I mean!

Not Just Trails

Getting to go on a walk with Asher is always a treat! It doesn't happen often just because of his eating/sleeping/therapy schedules, but we do try to find the time for it when we can. When I walk on the trails by my house, I never do it without reflecting on the many many times I walked those trails without Asher. This same trail has seen me in many phases of my married life! Some not so pretty. But when I'm walking here, it's one of the only places I feel like I can talk out, with God, whatever is on my mind. We've had many conversations on these trails. Or, well...I've talked a lot. Still trying to get better at just listening! I specifically remember walking them often, and wondering when I might push my own baby in a stroller down them. That seemed SO far away for so long. I prayed many times on those walks, and I tried to listen many times on those walks to what God had to say to me. I have 2 special memories that come to mind when I think of these trails. One, is after we started the in-vitro process. I was listening to "Never Once" by Matt Redman and I remember really feeling encouraged- regardless of the outcome, and that I knew God was faithful. If you don't know that song, you should listen to it. It has been so powerful and meaningful to us in this whole process. The chorus is "Never once did we ever walk alone, never once did you leave us on our own, You are Faithful...". I can't say I always thought or felt that with confidence through our infertility/pregnancy loss journey. But that day, I felt very loved by God and confident that He was good and His plans were good. I remembered that we had not walked our hard journey alone. He had been there in every part of it. I had hope again. And that felt good. When you are going through a journey of infertility, you learn that hoping starts to hurt...and so often there are moments you stop hoping in an effort to feel less pain. So, that day I felt refreshed and hopeful for what God might do. It's a sweet memory to look back on now.

The 2nd memory that comes to mind is after Asher was born. He was about a month old. He had just been moved to Children's for his PDA surgery. The surgery had gone very "routine" and well--it's still hard to believe he was 1lb and 10oz for his first surgery...and it was heart surgery. But, his lungs were becoming a bigger problem for him after surgery. He was very very sick. His lungs were so heavily damaged from being forced to breath air so prematurely. The doctor purposefully collapsed his lung to help it rest and heal.  He was on 100% oxygen on the jet vent. I don't know how much you know about breathing support, but you can't get more than that. If you are on 100% oxygen, and you struggle, there is no where left to go. You can't turn the dial up past 100%. So, it was very scary. We had many stressful days during his 5 month nicu stay, but this was no doubt one of the hardest weeks. I had had a dream that week that Bryan came to tell me that Asher had passed away, he said "he just couldn't breathe anymore, he couldn't do it". I have never had a dream like that. I have never dreamed I have lost anyone. This was a testament to the extreme stress we were operating in.  So, instead of rushing to the nicu that morning, I needed to walk. I needed to be in a peaceful place and think and pray. And, I was avoiding being up there, to be very honest. I was afraid. I was afraid it would get too hard. And I felt helpless. There was nothing, I thought, I could do for him. I couldn't comfort him, hold him, or fix his lungs. And so I just didn't want to go. I don't know how to explain it other than that. I know that may sound strange, but it's how I reacted. I guess traumatic situations produce all kinds of reactions. I tended to shut down sometimes and I wanted to just avoid more trauma and stress-- like pretending it wasn't there.  So, while I was walking down this path, I prayed. And I listened. And I heard God tell me to get up there, to fight with my son, and to pray with him. He told me not sit back, or shrink back. He said I'm his mother, and while I can't do much, I can pray with him. I heard him tell me I don't have to be in there alone, or carry this weight alone. So, my mom came with me and we went up to see Asher, and prayed over him in his isolette.  We prayed for healing. I instantly felt peace. It's amazing when we choose to tap into the peace and power God offers us instead of trying to do everything ourselves. God did heal Asher. In one week, his lungs made huge improvements. It's awesome to see God flex his muscles. I remember being so shocked to see my tiny boy with a nasal cannula instead of the vent or c-pap!

So, these trails have many memories for me. They are not just trails to me. They are a place where I've met God many times and I'm thankful for that. I was thankful on this day that I was making a new memory walking with my son. My baby. He looked so big in his stroller! I used the big boy seat instead of his car seat because I wanted him to be able to look out. He was so quiet the whole walk! It's whole new view not to just look at mom the whole time I guess! But, it was such a sweet walk. I thanked God for Asher. I can't wait to have many more walks with him in the future.

Prematurity Awareness Month: What I Want You to Know

November is Prematurity Awareness Month. Last year in November I didn't know that about this month. I didn't know much at all about preemies, especially micro-preemies. Now, I know quite a bit, and I am passionate about these little miracles...mainly because the Lord blessed my husband and I with the privilege of raising one.

1 in 8 babies are born prematurely. The March of Dimes website says in 40% of those pregnancies, the cause is unknown. And I find this to be true among other preemie mom friends I have. Many have not gotten clear explanations from their doctors as to why this happened. And if they are like me...they may not dwell on that too much because it's hard to think about that. It's hard to think about what could have been done to make things different- if anything. For me, I was told I have an incompetent cervix. So, the pressure of 2 babies was too much for my cervix. And that's not something anyone could tell me until I got pregnant and tried to have a baby. I asked my doctor if this would have happened if I had had just one baby. She said yes, but later in the pregnancy. So, in the future, I would get a cerclage  (stitch to hold the cervix closed) and progesterone shots to prevent preterm labor. My cervix started thinning and that triggered contractions and labor. I was dilated to a 2 when I checked into the hospital at 19 weeks, and the doctor could see Titus' sack! (He was lower than Asher.) But then labor and contractions also are what change the cervix. Confusing. I'm just thankful they were able to stop contractions and labor for 4 more weeks. That in itself was a blessing from God considering protocol is not to admit a mom until the baby has reached viability (23 weeks). Had they not admitted me, monitored me, and administered meds calm my uterus, I would probably not have a son here on Earth to talk about.  God had His hand in it from the beginning. So I don't spend a lot of time on thinking about why this happened- at least, not as much as I used to. But I do wish an incompetent cervix was something that could be diagnosed before hand, and prevented. I'm sure many premature births happen due to the mother doing something that is not healthy for her body or the baby's. However, many mothers do unhealthy things and are blessed with a healthy baby regardless. And then there are many moms (most of the ones I know) who did everything they were supposed to do in pregnancy and still, they had a premature baby. There can be scientific explanations for some, and that does play a role. But, I believe that a healthy birth of any baby happens only by God's mercy and grace - alone. He determines when babies are born. We have a perceived control over this by thinking if we just do all the right things when we are pregnant, then we will get an uneventful pregnancy and healthy, full term babies. I also think there's just this perception of "that won't happen to me" because it seems fairly rare.  I knew probably one person that had had a micro- preemie (baby born under 1lb 12 oz, or 26 weeks gestation) before I had Asher and Titus. But now, because it's where I am in life...I know many many mothers with preemies and micro-preemies. In Psalms it says "But You are He who took me out of the womb...from my mother's womb, You have been my God." (Psalm 22: 9-10) So,  I believe God ultimately makes the decision over when babies are born, if they are born healthy, and if they live or not.

So, what do I want you to know about premature babies and their moms?  They often look and act like full term babies, and many "catch up" after 2 years old, developmentally. For some preemies, by the time they are toddlers, it is often hard to tell they had such a traumatic beginning. For others, they will have life long diseases or struggles from being born premature.  Preemies don't need to "build up their immune systems" as people often say about babies. I once agreed with that, but I've learned that when preemies get sick, it damages their already fragile lungs further. And sometimes a sickness can be life threatning.  So, they need to be protected, not exposed. They began life with a fragile immune system that needs time to be built up. So, when a preemie mom is super careful about who touches her baby, who's around her baby, and who has washed their hands it's not just because she is very cautious. It's not only because it may be her first and "everyone is super protective with their first baby". It's probably more so because she knows how fragile her baby's immune system is. And she's seen her baby in a very fragile state, and she wants more than anything to never see her baby like that again.

For the first months of her baby's life, she had to watch him or her from afar. The one person in the world who was supposed to have a front seat in taking care of her baby, had a back seat behind nurses, doctors, nurse practitioners, and respiratory therapists. She had to watch her baby fight and struggle, and she could do nothing to help. She watched her baby get iv after iv, some in her baby's head.  (Asher has a scar on his forehead from an IV burn he got when he was still under 2lbs. He had to get shots in his head to prevent it from causing more serious damage to the tissue there...all while we watched.) She watched breathing tubes and feeding tubes be put down her baby's throat while her baby gagged and struggled, and she's watched tape being torn off and replaced over and over again on her baby's delicate skin. Maybe she even saw her baby go down to surgery and come up afterwards in pain, and still...she watched from afar because her baby was too fragile to be comforted by her. She may have pumped milk for her baby, and while that feels good, it's nothing compared to the joy and bond that breastfeeding brings. If she wanted to bathe or hold her baby, she had to ask a nurse if that was ok. And then, she'd need help moving the baby with all the wires at tubes.  She most likely couldn't feed her baby either - at least, not at first. And even then, she had to ask. Everything her baby did was out of her control. And this is how she started her life with her new baby. It was the complete opposite of what she hoped for or imagined. And so with all she's been through, she is very committed to protecting her baby- as any mother is. She just is coming from a different perspective. Another mother might be protective in fear of what could happen if her baby got sick or hurt, this mother has seen what can happen when her baby is sick or hurt. She's seen her baby in pain and sick more than a mother ever should. So, it's just a different perspective.

And once a preemie mom and her baby are home together, out in the "real" world, she is probably trying to figure out how to come out of the trauma and "fog" of NICU life, into a more calm life with a baby at home. She wants more than anything to be "normal" but might be learning that may never come, at least in the way she might have thought or as quickly as she might have thought. And she may really want to blend in with other mommies and babies, but at the same time she may want people to recognize that she and her baby are different, unique and special. It's a confusing place to be sometimes...life post nicu, and her feelings may change moment to moment. She may want to forget the NICU days in some moments, and other moments she may want to remember. And I can't say this is true for all preemie moms, but I can say on some days, it is very true for me. But, I am incredibly BLESSED to be walking through this with an amazing husband, and we are surrounded by very supportive friends and family- though none have had a micro-preemie experience. So, we are all learning together. I am thankful they are so supportive and understanding, and are full of grace for me and all my emotions as my husband and I figure out how to nurture, love, advocate for and support our micro preemie miracle.

So for Prematurity Awareness Month, I just ask you do just that, be aware.  It's not always caused by something the mother did or didn't do. Preemie babies in the NICU don't always just need 'time to grow'. Most are fighting to breathe. They need their lungs to grow. They need to get off oxygen because every day on oxygen is another day they risk damaging their eyes.  They need to learn to eat and breathe at the same time- one of the hardest tasks for preemies. Parents are told very often some of the life saving measures that need to be taken could mean that deafness, blindness, cerebral palsy, or learning disabilities may come. They are faced with impossible decisions, and there are weeks they are doing that daily. These parents are operating daily in an extreme level of stress. Once their baby fights their way to the "feeder/grower" stage, only then can mom and dad take a deep breath and begin to think that maybe things will calm down. And driving to the NICU everyday is exhausting. It doesn't matter if it is 5 min from home or an hour. It's emotionally and physically exhausting to live your life between two places, never really feeling "at home".  Know that every single thing a preemie baby achieves is something to be celebrated because they didn't come by that milestone easily. There was difficult road before that milestone...there were probably many days of waiting. Waiting for a baby to grow into "a real baby"...the kind we are all used to seeing- the ones you could hold, play with, feed, and give baths to.  To any NICU parents reading this: it will get better, you will go home one day with your baby, and that day will come faster than you think. Hang in there. You are doing the best you can, don't feel bad for leaving...take breaks, spend time together, take care of yourselves! Your baby is in the best care possible! To any NICU doctors or nurses reading this: you are an incredible blessing to the babies and parents you take care of! The way in which you do your job, and love on babies and parents blesses them more than they can tell you. I wish I could have expressed this more to the wonderful doctors and nurses who took care of us and Asher.

Also, know that the preemie baby's battle often does not end when their NICU stay does, it just looks a little different. It may look like wearing oxygen at home, being tube fed and struggling with eating, going to multiple therapy and doctor appointments a month, or having outpatient surgeries and procedures. All those things are blessings compared to NICU life, but they are still hard things sometimes. It's hard to continually see your baby struggle with things that are supposed to come naturally and be easy. Just knowing and being aware of this blesses preemie moms out there, especially ones you don't know yet that you might meet. Knowing and being familiar with what having a preemie can mean could instantly make a preemie mom 100x more comfortable talking to you, and could help her feel not so isolated, alone, or different.

All babies are gifts and miracles from God. Preemies and micro preemies are some of His most beautiful creations He gives us to teach us many many things about life, and about ourselves. I'm thankful for my son and all the depth he's already given me. I'm thankful for his brother and all he's taught me and continues to teach me. I hate the pain Asher's been through, and the pain he continues to experience. But, I know the Lord loves him deeply as he loves me. And I know He has a plan for his life, and what we are experiencing is just refining us, giving us depth, and helping us to remember that our lives here are temporary, and there's nothing here we should hold too tightly to.

"Before I formed you in the womb, I knew you. Before you were born, I set you apart." Jeremiah 1:5 

Only God can take this....

                                                                ....and turn it into this.

We are SO blessed to have witnessed this miracle of His! 

I want to end with a portion of a blog I wrote not long after the boys were born about 9 months ago. 

"As we were singing a song at church last night...I had future images flash through my mind. Here's the chorus :

You take my mourning

And turn it into dancing

You take my weeping

And turn it into laughing

You bring restoration

You bring restoration.. To my soul

I had a vision of Asher dancing one day and laughing- what a sweet moment that will be!

" You have turned for me my mourning into dancing; you have loosed my sackcloth and clothed me with gladness, (Psalm 30:11 ESV) "

And here is our sweet boy laughing. One of the first things that popped in my head when he started laughing was this song. Oh how the Lord is taking my mourning and turning it into dancing, and He's taking my weeping and turning it into laughing. He is bringing restoration to my soul. 

Sorry it is sideways! I turned the camera while I was recording. It's a lot to hold the camera, and the baby, and make him laugh! :)  

9 Months Old!

Can we really be 3 months away from having a 1 year old? I don't believe it! Happy 9 months Asher man! (5 months corrected)

Asher has been doing really well and we've been soaking up watching him start to talk more and move more! He has had a BIG month with eating. He started eating puree's not long after turning 8mo (4mo) old! He started with oatmeal cereal (video below) and did great! I couldn't believe how well he did and his therapist was really pleased too. It was a relief to learn that he has all the skills he needs for eating. You would never believe what all goes into a baby, or any of us really, when it comes to eating. It's not as simple as you might think! Our therapist decided that was can lay off trying the bottle for now, and focus on food since he's doing well with that. He never has sucked on the bottle again since stopping in late July/early August. We have tried a LOT to get him to suck again and he's just not into it. So, she said he doesn't need to suck for life, it's not a life skill but eating and drinking from a cup are. So, around 6mo corrected, or when he can sit up more on his own, we will start introducing the sippy cup and see what he thinks. It was sigh of relief to let the bottle go. It had really begun to beat us down because we just didn't see much improvement. So, we are slowly introducing new foods. We've done oatmeal and now sweet potatoes this week! And he's done great with both. It took him about a week to get used to food. At first he'd look at us like "what did you just put in my mouth?" Now, I think he understands more and doesn't grimace or look so shocked. So, the plan is to keep encouraging food, keeping eating a positive and social experience and hopefully after he's a year old (probably close to being a year old corrected) we can see about reducing his tube feedings of milk if he's eating enough by mouth.  We will see, that's what we are praying for!

Other than that, Asher is just trucking along, growing pretty well. He's had a week here or there where he didn't gain much over an ounce, but after we looked at the whole month, his gain was perfectly fine. He still struggles with throwing up frequently. And I saw throwing up because it is NOT spit up. I have learned what I think the difference is based on what I've seen and what doctors have told me. Asher rarely has a regular spit up. He gags, chokes, turns red, and wretches until whatever is making him uncomfortable is out, and it's often an ounce to 2 ounces that he looses. Sometimes more. (He gets a little over 4.) It's heartbreaking to watch. Lately his eyes have been tearing up too when he throws up, just showing how much force and hard his body is working to get it out.  True spit up is pretty effortless and just comes up- he has that every now and then. We try little things here and there to try to help with throw up. Right now we are trying a new medicine that seems to be helping a little. I pray a lot too..I pray we'll outgrow this phase soon. It seems EVERY mom I've talked to who has a child with a g-button, they have struggled with throw up as well and it seems as the baby gets older, it gets better. Some moms and doctors I've talked to think it has something to do with making the process so mechanical. Normally, we feel hungry, then we eat something. So, we make the choice, and then we chew, swallow..all part of the digestive process. G-button babies don't get that whole experience. They get milk pumped in their bellies whether they are ready or not! So, that's even more so why I hope Asher enjoys food and can start playing a more active role in eating, enjoying it, and understanding how it works.

Overall, we are so thankful for how WELL he is doing! He really IS such a miracle boy. I can't believe how much he's changed and grown into a beautiful, healthy boy. How humbling and amazing to see the work of God everyday at home in my son. I don't appreciate this as much as I should!!

He is starting to roll some...not on his own, but if we put him on his belly he will NOT stay on his belly. He immediately kicks his legs so that he turns back to his back. It's really funny. I can't get him to stay on his belly and prop himself up with his arms because he just starts kicking the moment I turn him over!

The elephant picture....again?! 

This is Asher's first time to eat food! This was about a week after he turned 4mo. 

Sweet potatoes 

Rolling! 

Dear Asher,

      Happy 9 months! This was a big month for you..you started eating FOOD! And, you started rolling on your own! You had oatmeal cereal first and you did really well. At first you looked at us like "what are you doing to me?" and then you got used to it. You eat 2-3x a day before you get your milk and right now your goal is to eat 1/2 oz of food 3x a day (or eat an oz at one feeding and 1/2 at another) . We just do oatmeal cereal or sweet potatoes right now, but next week I think we might try apples! Sometimes you like eating and sometimes you don't. We think you LOVE the social part of eating. You like it a lot when you get cheers and lots of attention! We will keep working on it and we are praying you will keep liking it and you will understand that we eat to fill our tummy's and that it feels good to do that. You started rolling too! You roll from your tummy to your back. In fact, you won't stay on your tummy at all when we put you on it. You start kicking your legs right away so that you can flip back over. It's really funny! You are getting so strong and turning into SUCH a cute little boy. We love looking at your facial expressions. For so long, we watched you in a plastic box in the hospital and wondered when you would be a baby with smooth white skin, a baby who could smile at us and make noises, and a baby who would do what all the other babies do. And now you ARE that baby! You are one of God's most precious miracles and every time you do something new, we are reminded of how truly amazing you are and God is for creating you and healing your tiny body. You are also trying to giggle! I've only heard it two times but we are going to keep trying to make you laugh. We can't WAIT to hear you giggle. What a sweet sweet sound that will be! We love you and are so proud of you for being strong through all you have been through and are still going through with your tummy and eating. Happy 9 months baby boy!! 

Love, 

Mommy and Daddy 

Happy Halloween!

The last time we dressed Asher up he was a little over 2lbs and he was a bunny for Easter. I was so excited to find a tiny preemie sized bunny outfit that I just couldn't resist. But, I promised him after that I wouldn't do that to him again, and the next time he wore a costume it would be of something tough like he is! So, we thought a shark was pretty tough. Have you seen Shark Wrangler?? Wow. They command respect. Ha! Well, we really enjoyed getting to dress Asher up for his first Halloween- can't wait to see him running around next year at Halloween!

Loves to grab my hair now! 

Asher's best friends! Going to try to photoshop him in since he couldn't join them this year. Maybe next year...