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.
No comments:
Post a Comment