Forward Motion

Some of you have been asking for an update, so it's just easier this way.  Today was NOT good.  That's a pretty big understatement.  It was awful.  So much so, that I can't wait for the day to be over, but I'm also dreading tomorrow in case it is the same as today.  I feel like we (Ross, Asher, myself) are treading water... like we are desperately thrashing in the water with all of our might, just trying to stay afloat.  It's not taking us anywhere, it's just allowing us to survive.  It seems as though we are clawing for solid ground and just when we think we FINALLY found our footing, we slip, and we have to keep trying with all that we have to keep our head up.  It's infuriating and disheartening. 

My sweet Asher just might be the most inconsistent baby on the planet which is also ridiculously frustrating.  Right before my surgery, he seemed to be doing well, better than before... not cured by any means, but greatly improved.  The organic lactose free formula continues to be fantastic, and by far and away the best formula he has been on to date.  We are NEVER changing that, it's the only thing that works for him.  Immediately after my surgery, Ross cared for Asher exclusively for a few days since I couldn't really hold him or feed him due to my multiple incisions.  During that time, Asher regressed greatly, and at the time, we thought it was just from the change in routine with Ross and myself.  We continued trying tactics recommended by the OT, some work well, some not so much.  He was doing OK, but not as well as he was before, so we kept trying different things.  We saw the OT again, and she was helpful and extremely encouraging and supportive.  She pointed out progress that she noticed which made us feel validated, but Asher still had regressed from where we knew he could be.

Feeding him is an absolute chore, a battle of sorts, and every single time I do it, I feel my adrenaline pump and my heart racing... I have a pit of nervousness in my stomach, just waiting for the meltdown (if it's not immediate).  In the last 2 weeks, Asher has had some really good days and some pretty horrible days.  What we thought was regression in eating from a change in routine may not have been that at all.  Shortly after my surgery, we started to notice that Asher was teething.  YES, he is young for teething, and YES, he is ABSOLUTELY teething.  He has EVERY frickin' symptom, and it makes him miserable much of the time.  I now think that the very beginning of teething is what caused his regression after my surgery, and it's gone downhill (and up hill, and back downhill) since then.  It's a 1 step forward 2 steps back kind of dance.  There were days when he took every feeding without crying, and finished the majority of all of his bottles.  One day, he drank his bottle in 4 minutes (it used to take 60-90) without a peep... other days, it took him 10-15 minutes, but still with little fighting... then, there have been days, like today, where he screams ALLLLLL day long, fights every second of every feeding, and sleeps like total crap.  He has the physical ability to drink a bottle in a short time, we know this from seeing it.  The thing is, he rarely does it now (previously he was doing it at least half of the time).  He has the ability to take really great, long naps during the day, and to sleep for good stretches (for a reflux baby) at night.  Some days he naps for 1-2 hours (very rare, these days), but more recently, his naps are 30 minutes or less.  Some nights he has slept stretches of 4 or 5 hours, but more typically now, he is up every 2 hours, and if we are lucky, he might sleep for 3 straight.  We know he has the capacity to do it, so that makes it all the more discouraging and frustrating. 

We visited my sister and her family in central IN for Christmas... we planned it long ago, but debated back and forth as to if we should go up until a few days beforehand, as we didn't know what Asher's status would be then.  We decided to brave the trip, and it went well.  He did absolutely fantastic in the 3 hour car ride... he was awake for part of it, contently looking around, then he napped, then we came to a screeching halt on the interstate which woke him up, then he fussed a bit, then he drank an entire bottle in the car (unheard of for him), then he cried a bit, then slept some more.  We were prepared for 3 hours of screaming, and multiple stops.  The only time we had to stop was for Ross, and Asher and I stayed in the car!  My sister has a HUGE house, so we pretty much had our own suite there, which totally made it doable.  Her house is also set up for kids/babies, so that made is so much easier, not to mention their awareness and respect of Asher's needs.  We had a great time with them and all were sad for it to be over.  We then traveled to central IL to my mom's for Asher to meet some other family members, and that car ride was pretty hellish.  He cried for at least an hour of the 2 hour trip.  While it was great to see family and for them to be able to meet Asher, it was pretty stressful because Asher wasn't well rested, wouldn't eat much, and was insanely overstimulated with the noise of so many people in a small space.  He was miserable and screaming for most of the visit.  It was important to me that my grandparents were able to meet him, as they are both in poor health an not able to travel.... Asher Elliott was named after my Paps, his Great Paps!  When I told my Grams I was pregnant, she got teary and said that she didn't know if she would live to see the day that I had babies... it meant a lot to me to be able to introduce my son to them.  Praise the Lord, he slept for 75% of the drive home, I think because his little system couldn't take any more, so he just shut down.  I am glad everyone was able to meet Asher and that we could see everyone for Christmas, but we will not be making that trip with him for a VERY VERY long time to come.  It's just not worth it.... I can't knowingly put him through that again - it's heartbreaking.

Contrary to speculation, it is not our fault that Asher doesn't like the car.  It's not uncommon for newborns to HATE the car, actually.  YES, we have tried to take him other places (the store, the park, etc.).  It is a complete nightmare and ends horribly, which is why we know we can't take him out yet... he just can't handle it.  The child has reflux.  Although it's better, it hasn't entirely disappeared, and it affects every part of his life.  It makes eating miserable, sleeping very difficult, and it has caused him to have a very difficult temperament.  He is VERY easily overstimulated.  Knowing this, Ross and I need to do whatever we have to in order to protect him from losing his mind, which means not dragging him all over creation and not allowing a million people in and out of our house.  He is VERY tense most of the time, per 2 professionals (the OT we are seeing and my pediatric physical therapist sister).  He has high muscle tone and a crazy extension pattern from the reflux that causes him to be tight/tense/flexed all of the time, not allowing him to relax, which causes him to be exhausted and fussy.  We love him more than words can say, but he is just not the baby that you can cart around everywhere in the car, he's not the baby that will sit contently on your lap for any period of time, he's not  the baby that you can plop on a blanket or stick in a chair/swing and leave... he requires MUCH MUCH more care than that, and it's insulting when people insinuate otherwise.

Some days are better than others.  Some moments are extremely enjoyable, and some moments are seriously from hell.  He has a very sweet personality when you can see it through all of his struggles.  He is the cutest little thing EVER, so that helps.  He has shown us that he has the ability to eat and sleep well, although he is far far from it currently.  He requires very strategic care... he is crazy strong, but has some physical challenges due to his extension and muscle tone, so we need to continue to work on that with him every day.  He gets overstimulated very easily, so we have to protect him and guard situations that we know will end poorly for him, even if it pisses others off.  I now know what my sister meant when she said you can't understand what it's like to have a child until you have one... not fully, anyway.  You can empathize with the level of sacrifice and commitment needed, but you can't fully understand the choices others might make in parenting until you are there.  Ross and I are doing SO many things we swore we never would, because that is what Asher needs.  The funny thing about parenting is that you can think you know what you are doing, you can think you have a great plan for how it will all go, and you can think you know how you would react in any given situation, but you have no idea until you are in it, as it's mostly governed by that little miracle that God blessed you with.

It's been a bit rough lately, but we hope and pray that it will improve greatly soon.  Thanks to those of you who aren't questioning our choices and actions and who are continuing to support us during this challenging time.  Thanks for taking us at our word and believing that it is, in fact, as bad as we represent it to be at times.  I have decided that I'm done trying to defend our choices or actions, and done explaining it away or giving excuses why we can't go about life like we have a frickin perfect/easy baby. We DON'T.  That's the reality, and we have to deal with it accordingly, in a way that is best for our family and for our little Asher.  We pray for happier less stressful times when our little boy is enjoying life more and struggling through it less.  We pray for a day when we can go back to church, when we can go to a friend's house with him, when we can go shopping as a family (NO we can't do those things now).  We pray for a day when he will consistently want to eat and not scream and thrash through every feeding.  We continue to pray desperately for relief and for progress for our little one.  These are some recent pics of the Ash man and some pics from his first Christmas.  He had no idea what was going on, but it was still fun to experience with others.

Look at that face!

This is just too cute not to share... Ross took this on his phone yesterday when he was doing tummy time with our sweet Asher  :)

3 Months and counting...

It's hard to believe that it's been three whole months since our sweet boy entered the world... it's crazy to think that he's been with me personally for a year now!  It's pretty surreal to have a whole little person grow inside of your body, and eventually come out to meet you and join your family.  The last 3 months have been the most difficult of my life, and that's a pretty high bar to overcome.  In some ways, it feels like we've been going through this struggle for MUCH longer than 3 months.  In other ways, it feels like it's only been a few weeks.  How can he be 13 weeks old already?   It makes me sad in a way... not that he's growing up, I definitely welcome that, but that Ross and I have essentially been robbed of a chunk of his infancy and we can't ever get it back.

Having a baby with severe reflux is NOT the same as having a healthy "normal" baby.  It's not just the physicality of the reflux that we are battling with him, but the fact that it affects EVERYTHING in his little world:  His development physically, emotionally, and socially; His ability to enjoy any part of his little life; bonding/attachment, etc.  He has this crazy extension pattern due to his reflux that causes him to flex and arch pretty much all of the time.  He can't be held like a regular baby.... he won't tolerate it.  He is CRAZY strong, but that's not always a good thing.  He has been lifting his head since he was ONE DAY OLD (for real), and he has had exceptional head control since only a few weeks old.  He has been pushing to stand and standing with his own strength/bearing weight on his legs for several weeks now.  Impressive, yes... but it makes it insanely challenging to care for him when he's arching and thrashing and extending to the point that I can't physically make him stop.  He has to be held ALL of the time.  He tolerates his swing now in small doses (before he wouldn't even go in it, he would freak out immediately), so that's good, but he can't be in it for more than 5-10 minutes without losing it.  He is interested in it for a short time, but not soothed by it like "normal" kids might be.  He is fantastic at "tummy time" due to his freakish strength, but he HATES it, and only tolerates it very briefly.  He HATES being flat on his back, and only tolerates it when he is under his "activity gym" with something to do/look at... the flip side of that though, is that being under the gym over-stimulates him 1/2 of the time, so it ends in screaming that continues once he's picked up.  He likes to watch his mobile in his crib and will lay there quietly to watch it spin as the music plays, but he's done with that after about 60-90 seconds.  He needs to be held, but also isn't a fan of being held all day, as he's constantly arching/extending/thrashing to get out of every position you hold him in.  I've been putting him in the Baby Bjorn to carry him around the house and he seems to be very content riding in it (forward facing only), but again, only for short periods of time.  He's a VERY FUSSY baby, and there is no way around it.  He will only cuddle on rare occasion when he's really tired and about to go to sleep or when he just wakes up (only first thing in the morning).  He can't be bothered with cuddling otherwise.  He gets bored easily, but overstimulated VERY very easily too, so it's a delicate balance.  He doesn't give cues for hunger/sleep like "normal" babies, he just starts crying without warning most of the time (crying is usually the last cue "normal" babies give).  He started smiling just after 6 weeks, but his smiles are very few and far between, as he's not generous with them at all.  He's been giggling in his sleep for several weeks, but has yet to laugh at all when awake.  He calms down when we hold him, but only sometimes.  He's not easily soothed and doesn't seem to be able to comfort himself at all either.  He seems miserable much of the time, and it's just heartbreaking to not know if he is able to experience joy yet... it's heartbreaking and infuriating that we haven't experienced normal joys of parenting that come along with the first child.  Don't get me wrong, we love him and adore him to pieces and would do (and have done) absolutely anything for him... it's just frustrating and discouraging to see others with babies who are the exact same age, seemingly having a joyous carefree time soaking up and loving every moment with their calm, compliant little one.

We haven't had many happy moments so far.  Yes, he is a tad better than he was... yes, he doesn't scream 24/7 like he did.  These are good things, and we definitely acknowledge the progress.  It's just that many of the sweet moments that people experience with their newborns were taken from us, and we will never get them back, so we have to grieve that.  We both have said on different occasions that we feel like we are missing him growing up... missing these precious things that go along with having a healthy newborn baby because we are constantly in survival/crisis mode with him just trying to get through the day or the hour.  People take having healthy kids for granted, and it makes me mad.  People who have never experienced having a child with severe reflux, extreme colic, or some other serious ailment have NO idea what it's like... they can try to empathize, but there is no way for them to truly know what we were and are going through.  It's frustrating and I have a heavy heart about it today.  He is making progress with his eating and with his sleeping, and for that we are truly very thankful... we pray that it continues to improve with each passing day.  We are encouraged when we see tiny glimmers of hope.  We have to be, because that's all we have to go on.  I just wish people would remember that although he's ridiculously cute and "thriving" in the sense of his growth, he's not a "normal" baby, and he can't behave like one, so we can't parent him like he is one.

We have to do things that we both NEVER thought we would do, because that's what it takes to make life work for him (originally having him sleep in our room, holding him ALL the time, having to rock him to sleep, having to continue to hold him every time he naps, feeding him in amount and frequency that we would feed a 1 week old, etc, etc.).  We have done these things and continue to do some of them because we have to, it's the only way with Asher (believe me, we've tried other ways!).  It's challenging enough to have to do things that way, but I suppose that's what parenting is about... doing what you have to do, no matter if it's what you want to do... doing what is best for your child, what your child needs, despite how others might judge you for it.  We adore him more than words can say.

His feedings are getting slightly better with less fighting/screaming and more eating... he's finished eating and sleeping much quicker than before (it used to take 60-90 minutes to feed him and get him to sleep, and now he's down to 25 minutes or less), he's pretty consistently sleeping longer stretches (longer for him, not for what is "normal" for his age) at night, and just 2 days ago, I started attempting putting him down during the day for his naps as opposed to holding and rocking him during EVERY nap.  In the beginning of his little life before the reflux started, we could do whatever we wanted with him.  The last time I was able to set him down and walk away for a nap was when he was 2 weeks old.  There have been a ton of naps between then and now!!!  Once the reflux kicked in, he couldn't be laid flat, and EVERY SINGLE time I tried to put him down (drowsy, sleeping, in the crib, in the cradle, in the swing, in the moby wrap, etc.), he would immediately wake up from the nap and I would have to start over again getting him back to sleep.  Once his reflux was in full swing, we started having to hold him during ALL of his naps through the day, only setting him down to sleep at night (at which point he would wake every 30-60 minutes).  We have come a LONG way since then, and I have to remember that.  When things are awful and I'm in complete despair, I just stare at him and imagine him as a 1 year old, then as a 2 year old, then at 3 years, and so on, and so on.  I try to imagine how his little face will change.  I try to imagine how his little laugh will sound (although I LOVE his giggle when he sleeps), I try to imagine what his hair will look like, what he will like to play with, what his voice will sound like when he can say words, how he will want to dress, etc.  I try to imagine and hope for better times, because I know they must be coming.  Sometime.

These are some pictures that I think are very sweet of Asher over his little life so far... one of me very pregnant just before he was born, his first bath at the hospital, his first few weeks at home, some fun outfits  :) and hanging out with some little friends.

Recovery

Lots of you are asking how I'm doing (which I appreciate), so I thought this was the easiest way...  A week ago, I was sliced open and had my gallbladder removed. The good times just don't stop around here!  I was in prep and recovery longer than in surgery.  My mom took me for the surgery and stayed to drive me home so Ross could stay home and watch Asher.  I think the surgery was an hour or less.  I wasn't a fan of having to get an IV again, but, what are you gonna do.  I didn't realize they would intubate me during the surgery, so I woke up with a crazy sore throat and a huge urge to cough... it was a reflex, but after I coughed, I realized, OH, I JUST HAD ABDOMINAL SURGERY!  OUCH.  Anyway, it was painful, but totally tolerable.  I got out of bed on my own and into a chair like an hour after surgery, and was on my way home with my mom about 2 hours post-op.  The nurses kept commenting on how well I was getting around and that I must have a very high pain tolerance... I really don't, which my mom was sure to tell the nurse  ;)  but I think having a c-section 2 months prior really put it all in perspective.  YES, the surgery was painful, but compared to a c-section and getting out of bed and showering hours after that, this was no biggie.

The day after surgery was actually the most painful... I was thankful that day to have the narcotics  :)  Every day since then has shown improvement.  Again, yes, it was painful and hard, I mean, it should be, they took an organ out of me... and I was very sore for a while, but it was easier than the c-section, so I can't really complain.  Ross took complete care of Asher and my mom was here to help with the baby and house stuff for a few days.  I would not have been able to do it without them!  Right after the surgery and in the days to follow, I was getting around much better than I was after the c-section, but I guess that has something to do with where and how the surgeries were done.  Laparoscopic procedures are amazing, and I still can't quite wrap my brain around the fact that they did everything through four 1" holes in my body, including pulling a snipped organ OUT of my body.  crazy.  There is obviously a reason why c-sections have to be so invasive and have to be "open" procedures... An almost 10lb baby won't slip through a 1" hole sliced in your abdomen  :)  The incisions are healing nicely and aside from getting up/down too fast or twisting/turning/bending in a position that I shouldn't, I'm getting along just fine with very manageable pain.  The challenge is having 4 holes that are stitched shut and held together with tape while trying to care for a heavy and very active baby.  There is 1 incision in/above my bellybutton, 1 right below my sternum/ribcage, and 2 on the right side of my ribcage... the location of these makes it painful and difficult to hold, carry, feed, and nap Asher.  Ross has been doing most of it because he's been off work to help me, and when I do it, I can't do it for too long and have to be super conscious of how I'm holding/moving Asher, because it's uncomfortable to have tons of pressure and thrashing on healing incisions.  We will get through it and be just fine.

Mr. Asher is doing alright... he seemed to have a setback when I had the surgery (perfect timing, right?!).  We can't be sure, but it may have had something to do with the fact that for days Ross was the only one feeding/napping him, which Asher wasn't used to, so he was especially fussy and would refuse feedings with more agitation and force.  This didn't exactly help the stressful situation we were already in!  He has gotten a bit better in the last few days... at this point, we are pretty sure that it's mostly behavioral.  The new lactose free organic formula has done wonders for him, but it hasn't "cured" him, as there is a terrible feeding aversion that has come along with the reflux.  The reflux has significantly diminished with this new formula which is fantastic.  He is eating better and eating more, but the aversion is still there most of the time.  Some days/hours are better than others... If he is tired enough or starving enough, he will take a bottle here and there with little fighting, but most of the time, it's a HUGE battle.  For those of you who think we are over-reacting, let me assure you, we are NOT.  The sound bites that I have sent via text are a tiny glimpse of what Asher does when he eats, almost EVERY time.  He has an aversion to eating caused from the pain he previously experienced from the reflux... we think that he is experiencing much less pain these days thanks to the new formula, but it can take little ones several months to realize that it's not going to hurt to eat, and that they don't have to fight or be afraid anymore.

Here's how it goes.  more than 90% of the time, feeding him is a huge battle.  Ross and I are pros at it, and have learned how to manipulate things to get the best outcome.  First, we swaddle him tightly so he can't thrash as much, and so he stays a bit calmer.  He HATES this, but it's the ONLY way, and it works.  Next, we have to rock him... he may drink some before becoming agitated, or he may scream his head off right out of the gate.  We then have to use white noise, and specifically only one track works for him... it's a recording of a VERY loud hair dryer.  It's extremely abrasive, and it works like magic 99% o the time.  We have to turn it up VERY VERY loud, and it's like a switch... he stops fighting and gets silent, mid-scream.  Some professionals say it's because babies have a calming "reflex"... that it has to be tripped like a switch (by swaddling, rocking, letting them suck on a pacifier, or by "shushing" them with loud white noise).  Some professionals think it's crap and say that babies quiet because they are shutting down because they can't take the stimulation.  Whatever it is, it's the only thing that settles him down enough to eat.  THEN, we can finally feed him, and once he has eaten, he typically goes to sleep with assistance from us.  It's a huge process and ordeal, and this is what we have to do for EVERY SINGLE FEEDING, which is about 8-10 times a day.  This is why Asher isn't portable like other babies.  This is why it's hard to host anyone or have company.  This is why we are just getting by hour to hour, and this is why it's all-consuming to care for him.

Aside from the eating aversion which is terribly stressful and frustrating, he's doing pretty well.  He's starting to organize his night sleeping and has consistently slept for 3 longer stretches at night most nights for the last few weeks.  Even when he fights, through our magic and trickery, we can get him to eat most or all of his bottle every time (due to the new formula tasting better and being MUCH better on his system), so that's good.  When he's awake, most of the time, he's pretty content, even smiling, cooing, and playing like "normal" babies.  He smiles socially, is super interested in your talking or singing to him, and loves certain toys.  He likes anything that lights up or anything that is musical, things that move, etc.  He grabs for and holds on to toys now, and he absolutely loves his activity gym.  He is starting to try to put things in his mouth, and has successfully gotten both hands in his mouth on several occasions.  He recently discovered that he has feet, so that's been fun to see  :)  The other day he was wearing a sleeper (footed pajamas) with animal faces on his feet.  It was hilarious... he was being held, and he would pull his feet up and hold them out as long as he could so he could look at them  :)  I think he might start teething soon, recently he's been drooling like CRAZY, gnawing on his hands (not just sucking), and wanting various things in his mouth.  I know it's early, but by being a social worker who does assessments on the development of newborns, I also know it's possible to start teething as early as 3-4 months.  We shall see!

Here are some recent pics... we took a bunch in his owl shirt, this is the first article of clothing purchased for him ever... I got it immediately after we found out we were having a boy, before anyone else knew  ;)  It's a long-sleeved owl onesie (shocker) that has psalm 51:6 on it (you teach me wisdom, oh Lord).  Pretty fitting verse for our situation!  There are some of him playing in his "activity gym" which he loves, and one of him in his super sweet mamaroo swing that my Mom got him... he has not been a fan of it up until now, I think mostly because he has pretty much hated life, but just in the last few days, he has tolerated being in, and even seemed to enjoy it!  Praying that continues, as it would be a welcome break to be able to put him down without him screaming for a few minutes  :)