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...

Our Pumpkin Patch 2012

We have an awesome Pumpkin Patch not far from us and it's a fall tradition for families in this area to go there with their kiddos in October. I had been kind of feeling sad after seeing all the pictures of families on FB at the pumpkin patch and many had little ones with them who are the same age as Asher. We had decided we would just wait until next year to take him just to avoid crowds- even though it's an outdoor event. So, without me knowing, Bryan went and bought several pumpkins and gourds and set them in the backyard so we could have our own pumpkin patch! He surprised me one night and told me he'd already asked my friend to help us take pictures the next day. SO SWEET. So thankful he hears my heart and loves me well.

RSV Lockdown- Why we can't "play"....

It's October and that means the beginning of RSV season. And for a micro-preemie mama, this is not something to take lightly. I am thankful we came home at the end of June and had a few months not to think about this as much! For us, going into this fall and winter, things really won't look that different for us as far as what we will expose Asher to. Because Asher was born waaayyy before his lungs were fully developed and because he was ventilated for 1 1/2 months and had significant lung disease while he was in the NICU, he is at a much bigger risk for getting very sick, more than the average baby. And not just getting sick, but getting sick enough to be hospitalized.  Asher's airways in his lungs are more narrow than they should be. So, a cold for him could quickly turn into a severe case of RSV where he would need oxygen support in the hospital. I borrowed this picture from another micro-preemie mom's blog--it really gives a visual for what we try to explain to people. (Her blog is Life With Jack- check it out!) 

You can see at the top the progression of lung development in the womb. You can see the difference between 24 week lungs and full term lungs! So, Asher's lungs had to do a lot of growing outside the womb. What's interesting is that when babies are ventilated, that actually damages their lung tissue. It's life-saving, and necessary- but every time that tube is put down into the lungs, it damages the tissue a little. What is encouraging about lungs is that they continue to grow until a child is 7 years old. So, they get stronger and healthier each day! Right after Asher's heart surgery, the big concern was his lungs. He developed P.I.E., which was essentially like emphysema in adults.  The dr said that if those were adult lungs he was looking at, there wouldn't be much room for improvement. But, because he was a baby and growing new tissue everyday, we had hope for it to get better! And, because of our healing God, and the medical world...Asher's lungs improved significantly! It is amazing he did not come home with oxygen...many, many 23 weekers do. 

The bottom illustration shows why an RSV infection for Asher would be so severe. You can see how blocked the airway is, which means breathing and getting oxygen around the body would be very difficult. 

So, since Asher got home, we have been pretty strict about what he does and who he sees. And now that it's RSV season, we will be even more cautious. Asher won't be around any small children or babies unless we are in a very open space outside and no one is touching! So, we can go on walks, go to the park...and a few other things that are outside. But, no malls, stores, restaurants, nursery or childcare settings or anything inside for us until after RSV season and Asher is a little older. Most sicknesses are spread through touch, but being inside means air is less ventilated, and there is a chance of catching something that way too, or just being in a crowded space with many people. Also, we are very cautious about the adults that do see Asher in that there can be no hint of sickness or we'll just have to plan on another time to hang out. We ask people, even our parents, to wash their hands right when coming in the door and then apply hand sanitizer often and right before touching Asher. And that's not only for Asher's protection but mine and Bryan's as well. We don't need to be sick either! Our parents had to get their flu shots this year and a whooping cough shot since they are with him pretty often and are our FAVORITE, (and only) babysitters! 

I've heard people say... "how will he build his immune system up?" Well, Asher is exposed to germs- we are by no means germ free people! Bryan goes to work each day and there are a few places I go without Asher, and so he is getting somewhat exposed. Even when he was in the hospital, he still was somewhat exposed to things because it was a hospital with lots of different doctors and nurses around. And even though they have protocol for keeping things sterile, its just impossible to guard someone from everything. So, I have no worries about our little miracle boy building an immune system. That is the LEAST of my concerns for him! 

I am a little nervous going into this season...just for my own heart and sanity. But many mothers have gone before me and braved this season of their lives as well with their little ones. So, it can be done! We just have to get creative with our "outings" and what we do to stay entertained. Right now, it's about my entertainment because Asher is pretty laid back and doesn't really care where he is.  So, I just have to do things like finding every drive through place there is around me, doing errands where Asher doesn't have to get out of the car, and being outside. Most people don't want a mild winter...especially after the darn west nile virus outbreak we had here...but I wouldn't mind it because it would mean we have more options of things to do! So, we can't do play dates and things like that really until next spring and summer, which again...at this age is more about me than about him! By the time he really is able to interact with other kids, we'll be able to do those things. (Until next winter!) 

I have friends who have toddlers and preemies at home, and that would be much harder to balance as toddlers want to go go go! So, I'm going to do my best to embrace this season of getting lots of time with my boy. It is a loss, and hard some days not get to go to a friends house with my baby, or meet them at a mall or do anything with my friends and have Asher with me as well. Those are things I have longed to do for a while now. So, some days that is hard. But, keeping Asher healthy is our priority. So,  those things will have to wait a little longer. I know there are also many moms out there who's hearts are heavy as they leave their little ones each day to go to work, and some are moms of preemies or micro preemies as well. I know they long to be able to be at home with their babies. So, I am SO very thankful and blessed to be able to stay at home with Asher and get a first row seat in watching him grow and learn. And I know...because "they say" that he won't be a baby forever. It's hard to believe because he's been a baby a lot longer than most! But, he will grow up and be a kid one day. Every time I see little boys places I go, I try to picture Asher that age. It's hard to do! But I know it's coming. So for now...we will embrace our time of little distractions and LOTS of time at home together. 

8 Months Old!

Here's Asher's 8 month pictures from Tuesday! 

dimple :) 

The only smile I could get! 

Month 3 to 8 

Birth, 4 months, 8 months

It's hard work to sit up in the bumbo and try to grab toys! 

Dear Asher, 

              Happy 8 months (4 months corrected)! You are changing so much! You talk SO much more now! You like to talk in your carseat, while you are playing, and even when I put you in bed for a nap sometimes. I think you might take after your dad and be able to talk to anyone about anything! It's so fun to listen to you.  You can entertain yourself for quite a while playing and talking to yourself. You also smile a lot more and it's not so hard to get one out of you-- your smile makes people just melt, it's so sweet! You don't like to smile though when I'm taking your picture. I think you are so interested in the camera you forget that you like what I'm saying and want to smile! You have a lot of expressions now and you are moving a lot more, we really can't believe how much you are changing and showing us your personality. You are getting so strong and you like to sit up straight, you don't want us to hold you like a baby! You also are getting closer to rolling to one side, we'll see by next month if you are doing it! You are still a good sleeper which we LOVE. You are still working on wanting to eat, you have made little improvements and we are so thankful. We just keep praying you will want to do it and enjoy it one day. You also still have trouble with throwing up your food which we also pray about--it's very sad to watch you do that. But, we are hoping the more you grow, the less that will happen and that God will keep healing you as He has done your whole life. You are just about 12lbs! When you were born, we just couldn't imagine you being even 8 or 10 lbs. We are so thankful you are growing so well! We love you so much and are so proud of you! 

Love, 

Mommy and Daddy 

"Oh Lord, please send someone else..." Exodus 3:13

I'll get to the title of this blog in a bit. First, just an Asher update. :)

I love this onesie! A friend's preemie had it and I just had to get one! In just a few days Asher will be 8 months old! (4 months corrected) I'll post pictures soon...I like to do them ON the actual day!  8 months is truly hard to believe. I mean 4 more and we are at 12! That's just crazy. And Asher isn't an 8 month old to me...he's a 4 month old really because that's the way he looks and acts (developmentally).  The last month has really gone by fast. It's interesting...the days can be slow, but a week is over before you know it. We have just been busy with our routine and things have been pretty calm- which is SO nice! August had a bit too many hospital visits for me. So, this month has been nice.

Asher has feeding therapy twice a week, and then other appointments here and there but those two are the consistent ones. He's making slow progress with therapy. But it's progress! Our therapist is good at pointing out any little thing he's doing differently or better. I really appreciate that because to me he's just still not eating! But I do see it when she points it out, it's just very very slow and hard to set up a "perfect" scenario for him to want to practice eating, but we are working on it. We are working each week to shorten his tube feeding time so that he can hopefully get down to 30 minutes again. This would be so good for all of us! For him, it is a more natural feeding process to eat in 30 minutes rather than an hour or more. (Which is what we've been doing.) And eating over 30 minutes will give his tummy more time to get hungry again before the next feeding...which should help motivating him to eat. He still struggles with throwing up and I think that's part reflux, and part because he's tube fed and it's just not the natural process. Today I made the mistake of measuring it! Yes, that's what I said...I caught his throw up with a cup and measured it! I have a sickness! It's called "I was in the nicu too long"! But, it's interesting to me to see, and I KNOW the medical world will love it when I can tell them exactly how much throw up is a medium or large one. He had a big one today and it was 2 ounces. He only gets a little over 4 ounces. So....it's a good thing we are weighing him every week. He keeps gaining, thank the Lord. Some weeks more than others. I can't WAIT until throw up is not a part of our day so much. That surely does not help him with wanting to eat. Every feeding we engage him for about 20 minutes with the paci, bottle, another tool, or a combination of all 3. He will let us put those things in his mouth, and he'll play with them a little, gum them or lick them...but he's not really wanting to suck yet. He's getting close though! And that little stinker sucks in his sleep all the time. We'll hear him and say "what's that?" And then realize he's smacking away! I guess practice is practice no matter when he does it. :)

Ok....so on to the heart stuff and what I'm being taught- yet again, I think. Lately, I have found myself wishing parts of this time away, and wanting to be in the future- where I think things will be easier. Or just wishing everything could have been different, that this story could be someone else's. And I wish I could say this was the first time for me to struggle with that but that would be a LIE! I have often wished away a time in my life- ready to discard it and move on to something else I had convinced myself was better and more fulfilling. Such a lie that is. What is SO hard about being content where you are?? Paul said he'd found the secret. I'd sure like to. I feel like I write this over and over on my blog, so if anyone is still reading it- thank you! I heard a speaker this week touch on contentment and how while we are often wishing a time away, we miss things right in front of us. I really don't want to keep doing that. And I know I've said most of this before, just in a different way. It's just what God keeps showing me over and over- I wish I could have learned it the first time and moved on! But, I don't think that's human nature. I'm comforted in knowing many people of the bible needed several chances to learn a lesson.

In my bible study, we are studying Exodus and Moses is right now being told by God what he will do and say when he goes to talk to Pharaoh. And Moses makes excuse after excuse about why he is not the guy for the job. He grumbles at God and asks him several times if he really thinks this is the right plan for him. I think when he tries to talk to Pharaoh and things don't look so good at first, he was probably wishing that part of his life away too. He was probably just wanting to fast forward past all of that and into the part where they are in the promised land. I can understand why he says  "please send someone else". I have felt that way. So, it's easy as an observer and someone reading the story from the outside to judge Moses and say things like "gosh, he really just didn't trust God and get that it was going to be fine, and that GOD was only reason he could do any of that". But I am not so far away from Moses. It's just my conversations with God are not written down in a book for the whole world to see! Thank goodness! I often find myself telling God "I do not want this plan, thank you though." And how patient is He? He lovingly keeps re-directing me, and reminding me it's GOOD, and RIGHT, and PERFECT.

I tell him things like "mmm, I'd rather not have to deal with Asher's eating difficulty, I'd just rather you go ahead a fix that for us" or "I'd rather not have a million triggers a day that remind me of the enormous loss I experienced in the last year" or "I'd rather have a baby that I can take anywhere and do things like have friends over, go to the church nursery, have play dates and not worry about him getting sick because I really never wanted to be a germ- a- phobe." And so God could say yes right now to all those things and take them away if He wanted. Or He could have given that to "someone else". But what a loss that would be. I mean really...all the losses I deal with of the past year - daily- in my mind are hard...but what about the the bigger loss of having a shallow heart and soul that was not being refined had I not gone through this?  I know that is a greater loss. I "know." I "know" a lot of things, but that doesn't mean my heart lines up with what I know. And that's what I need prayer for, and need to fight for-  my heart to be in sync with what my mind knows is Truth and has already accepted.

This week a friend called to ask me a question. She knows a family in a nicu who was losing one of their twin boys. Born at 24 weeks...now past term but had many issues and there was nothing left for doctors to do. She wanted to know what to do for this mom after her little boy passed. She wanted to know if there were things people did for me that I really appreciated or meant a lot. My first reaction was I was thankful she called and thankful I could help. I knew there weren't many she could call to ask about that, and I was thankful she felt comfortable enough to ask me. I gave her some ideas and we hung up. And then everything hit me. Suddenly my mind was back in 8 months ago thinking of Titus. I was overwhelmed with emotion. I replayed scenes I had been told about and conversations. I remembered Bryan telling me the doctor told him "even if I could save him, he would't have much of a life, he'd have so many issues".  And in this moment, I was thankful we did not have to see him suffer like this family had seen of their son. That would be harder in many ways -- to see him grow and change, to get to know him...only to loose him later. But I also grieve not getting to know Titus at all, not getting to see if he would have looked like Asher does now...not getting to experience what it would be like to have twin boys and all the craziness that would come with that. I struggle with that. But, I am glad she called though, and she called because I knew what it was like to loose a twin boy. That's not a club I wanted to be in or asked to be in. And many days my heart fights that and asks God why what was the point of that? I had just asked him a day or so before she called, what was the point of that suffering and couldn't we have just gotten pregnant with one child, had him early, and only dealt with the nicu stuff and not the loss of a son in the process?? So, again...God graciously showed me that He will use me through my experience if I show up and let Him. I just wish it wouldn't hurt in the process. But, again, He'll use that I'm sure.

So, I am often like Moses I think in that I question God more than I should. I ask Him to repeat over and over what the plan is and I want reassurance over and over that what's happening or what He wants me to do is in fact, what should happen. I shouldn't give Moses such a hard time. He said similar things to God that I have. He pretty much said "No thanks, I'd rather not do this free your people thing. I'm pretty comfortable with my life, it's a good life...and so, thanks for offering but I'll just stay right here. How about my brother? He'd be good." And God, graciously reassures him over and over again that He's got a plan, He's going to give him all he needs to carry it out, and MOST importantly, HE is WITH Moses.

So, if God had said "Fine Moses, you're benched, I'm getting someone else"--- where would that have left Moses? I think if he was here and could talk he'd say that would have left him not nearly as blessed as he ended up being in obediently following the Lord. Would he say it was fun, carefree, and easy? Probably not. But when did God promise fun, carefree, easy would come with following Him?  So if God had said to me "Ok, Robyn...you can get pregnant fast,  and you can have your twins... your 2 healthy babies", where would that have left me? More entitled. Comfortable. Less changed. Less mature. Less refined. What scares me is I STILL want to choose that some days. I want to go back and change it all some days. After ALL He has shown me, blessed me with, given me----GEEZ. It's frustrating to see yourself NOT learn the same lesson over and over again.  "But God- rich in mercy made a way"....He made a way for me to SEE all of this, and to learn and grow and change.  So that slowly,  I have more days that I don't think that way, more days that I love my story and the potential ministry he's given me, and already started giving me the honor of using to help other moms or women. More days where I feel His presence with me, even in the things that seem mundane and routine...telling me it's going to be okay, and this was all already planned out.  More days where I just see a beautiful baby boy I get to mother instead of seeing the one I didn't get.  I look in the mirror all the time, holding Asher and feel like it is still surreal God did actually give me a child- one that grew inside me. I forget that a lot, strange as it sounds. I sometimes feel like we adopted him from the nicu! He spent more time there than he did inside me. I do have an amazing, perfect, baby boy. And a supportive husband who serves and loves us SO well. We both have wonderful parents. We have friends who are beyond loving and supportive. My cup is truly full, and so is my heart when I think on those things.  The Lord has loved me well and blessed me. And he never said that would look easy and pain free for me to experience His love.  I hope I can remember this better and honor Him better and more completely not just with my outward actions...but more importantly - inward- in my heart...in having a heart that is truly grateful, a heart that continually pours out thankfulness for the many things He's so mercifully given me.

I love how after Moses experiences example after example of God's faithfulness- he goes from saying "send someone else" and basically whining to God... to telling the people of Israel "Remember the day in which you came out from Egypt, out of the house of slavery, for by a strong hand the Lord brought you out of this place." Exodus 13:3  He went from - "I'd rather not do this, I'm not the guy, and I don't see how it's going to work",  to effectively leading and shepherding God's people out of tyranny and into freedom. That's no small task. He got to not only be a hero of the bible, but also play the lead role in foreshadowing Jesus and His ultimate offer of freedom from the tyranny of our wicked souls. God used him, and not just in a small way, which is probably what he deserved given his enthusiasm. But God poured on His grace, and said "I'm going to take this unenthusiastic, uncooperative man and use him to do BIG things for my kingdom." Reading this, I know there is mercy for me too as there was for Moses. God has grace for me when I tell him I would have rather had a "normal" experience, and I'd like to just blend in with everyone else when it comes to pregnancy, childbirth, and having a newborn. He is patient, and loving, like a parent who can see the 'whole picture', and gently guides me in the right direction, putting up with questions, doubts, and whining along the way because of His great love for me. I have no idea how God will continue to use my experiences, but I trust He will. I just find comfort in knowing a man who God used in such big ways struggled with similar insecurities in trusting where God was leading him. These pictures remind me of where God was leading me last year when I questioned if He he would give us a child, and they give me hope that He's always leading me somewhere significant. I just have to commit to truly living with open hands, trusting Him, and believing He's with me in it all.

Asher's 8 month pictures will be coming soon!

Tummy time with dad 

Still sleepy from a nap- so sweet. :) 

When Asher was born he was the size of a water bottle. We decided to see how he measures up now! He was 1 lb 2 oz at birth and 11 1/2 in long. He's about 11 1/2 lbs in the 2nd picture and 22 in long! 

Asher is talking a LOT more. He does it more when no one is talking to him or paying attention to him. It's so cute! He talked all the way to therapy in the car the other day, then talked to the therapist, and then was still talking when I put him down for a nap. Gonna be like dad I think! 

Labor Day- First Family Outing

For Labor Day we went to my parents house to cook out and eat dinner. This was our first time, as a family, to go somewhere together besides a doctor appointment or the hospital! Such small thing, but a big thing for us. A nice piece of "normal"! Asher enjoyed getting loved on by his Gammers and Papa Ron!
 We also got to go on our first date since Asher came home this weekend. We went to church and dinner with friends and that was SOO nice and fun! It's been quite the change for us to not really go anywhere! Bryan and I had many many dates eating out, especially while Asher was in the NICU because we just didn't have time to eat at home, and then before that, many dates where I remember thinking that I was ready for our lives to be different. We had waited almost 3 years before we had a baby at home. I know that's not a long time compared to some, but when you live 2 of those years one month at a time meaning, "is this the month we are pregnant?", it can seem very long. And then we spent the 1st half of this year in a hospital. Hospital life drags on, it's like time is moving, but very very slowly and you feel like for everyone else life is happening, but you are kind of just stuck. I still feel like I'm in last fall. I can't believe it's September again!  I feel like it was just last fall and the holiday season!  It' a weird feeling!  So, anyway in that time of waiting, there were lots of dates and lots of moments of me telling myself to enjoy the freedom ....even though I was often very hurt and frustrated we were still waiting to have a baby at home. It has been a looong process. But, now I can really, really appreciate those days even more and that freedom! We have been ready for this change of pace though, and we are very grateful for this precious boy God has entrusted to us!

7 Months Old!

Asher turned 7 months old yesterday!! (3 months adjusted) Sometimes I feel like it has definitely felt like 7 months since he was born, and then sometimes I can't believe that much time has passed. This is his first time to take his monthly birthday pictures with nothing on his face! And what a sweet face he has. I could NOT get him to smile! He's much more aware of what's going on now....so he watches the camera or my phone and is so interested in that instead of what I'm saying to him to make him smile.
Boys.

Birth to now

When he came home to now 

Last month to this month

I love looking at these comparisons! I don't see these changes until I look at pictures and realize, wow- he IS changing and growing! I still feel like he will always be a tiny peanut! Looking at his birth picture to now brings a lot of emotions out-- sadness, unbelief, happiness, and overwhelming gratitude to the Lord... to name a few. 

Asher has been doing well after his g-button surgery...the first week after it was very rough, we could just tell he felt bad. But, he's gotten better, and back to being a pretty content baby. He still doesn't want to eat though. It's been 1 month since he stopped eating by bottle. But we hope to be working back toward that soon. We still have to feed him slowly (over 2 hours until this week and we started going back to an hr and a half) to help him with not throwing up. We are working on shortening that time little by little and hopefully allowing him to feel hungry again- which may motivate him to eat! Getting fed slowly means he's got food in his tummy almost all the time, so he never feels very hungry. It's a balance to get him what he needs, but also try to create a schedule that will help him get back to wanting to eat. We start feeding (called speech) therapy this week at Our Children's House, and we excited about that! We are praying for patience for Asher as we work with him on this, and we are praying that his little brain will "forget" all the negative things he's experienced in his mouth and throat-so we can rewrite his experience with eating. 

I was with a nurse last week who was checking the g-button site, and she said "How old is he, 6 weeks?" I said "Um, no..he's 7 months, 3 months corrected...he's a 23 weeker." She said "Oh wow, he's a blessing, do you know how lucky you guys are??" I said "Yes,  I know, it's just this eating thing we are dealing with." She said "Well, when he's a grown up- he'll be eating...he'll be just fine." Now, sometimes I get offended when people belittle what we are experiencing with Asher's eating. It' s a loss to grieve when your child can't eat like God created him to. But, in this moment- I needed to hear that. I needed to be reminded that he doesn't have a disability that will be with him the rest of his life. He will have to have his esophagus watched and stretched probably until he's a toddler, but most likely that will be resolved after that. He did have many medications that all had risks of developmental delays, and much of that we won't know how he will be affected until he's older- but by God's grace, right now he has the opportunity to be a healthy little boy, kid, teenager, and grown man one day. (Hard to imagine!) Sometimes I need people to tell me they are sorry, and they can understand these days are hard, and then sometimes I need someone to say- it won't always be like this, things WILL be different one day! It's just hard to see and believe when you are right in the middle of it. That's true for anything hard. 

So, thank you for reading...and thank you for praying for this sweet boy. He is where he is because of God's grace in how He's responded to the MANY MANY prayers said for Asher. 

Dear Asher, 

Happy 7 Months!! You are getting so big! And you are getting so aware of things around you. You really like looking at things now....toys, phones, remote controls, things outside...lots of things catch your eye these days. Even your own hands! You watch them move as if they are so cool, and I don't think you know yet that they are part of you and you control them. I think you are slowly figuring that out. You are still cooing and trying to talk to us and your toys, and lately you are doing an very soft "growl" when you are playing. Your dad says you know what a lion says because you often growl when you are looking at your lion toy. Smart boy! You are moving a lot too! You love to kick your legs and move your arms in the air when you are playing. I think it won't be long before you will roll over on your own. You really like putting your hands by your mouth, and even in your mouth now. Doing that often calms you down and comforts you. You still don't like eating, but we are working on that! You are such a patient boy. You can play by yourself for a good amount of time before you want some attention. We love you so much and we are so proud of you for being strong, and patient with what you've had to go through. We can't wait to see what else God will do in your life!! 

Love, 

Mommy and Daddy