Update on Little Bear

It’s been just a few months since I last updated about Little Bear. The past 6 months have been overwhelmingly crazy busy. Thankfully nothing too drastic with Little Bear, but still, life, ya know?

Little Bear is a month away from being 1 year old and the memories of his first year are alternately startlingly clear and foggy. The clear memories are of course the most traumatic (my water breaking 6 weeks early, rushing to the hospital, him being born a mere 4 hours from my water breaking, his seizure coming out of surgery in April, his botched sleep study…) and the foggy ones are the every day random moments (the first time he smiled, the first time he fully rolled over all by himself, the first time he slept through the night…). All thing considering, Little Bear is doing very well. He is funny and quirky and very opinionated for a baby. As long as he has food, naps, and mommy, he’s good. He is the happiest baby I’ve ever seen and I know I’m his mother and I’m biased, but seriously, he smiles and laughs a heckuva lot.

Little Bear started crawling this past week, and at first it was moving his hands forward and then hopping or scooting his legs together. Now it’s actually alternating knees as he “walks” forward with his hands. Little Bear has realized that he can actually move himself to get the things he wants, and when he wants something, he can move quite swiftly. Big brother’s toys are no longer safe, and Little Monkey has to constantly move his lego towards and planes and cars out of the way of Little Bear’s eager fingers. I love listening to the two of them in their room in the mornings. Typically both of them are away by 7am, and Little Monkey entertains a bubbly Little Bear with toys, wild dances, and by dumping various objects into Little Bear’s crib for him to play with.

Little Bear’s therapist comes to our house once a week and we realized a few weeks ago that Little Bear purposefully stops doing some things when she is here. It’s really rather amusing! When he doesn’t want to do some exercise she’s trying to get him to do, he’ll try to roll over to his back. He even tries to roll over at times when he’s standing or sitting up. Yeah, doesn’t quite work like that, little bud! We’ve realized that even though Little Bear is quite strong, he doesn’t quite get mobile planning. As in he doesn’t reliably remember hands on the table first, then you push up to stand up. He more often than not tries to launch himself upright and ends up bopping his nose against the table. So yeah, we’re trying to remind him that he needs to stabilize himself first and then complete the steps.

I am no longer feeling like we have to continually be on edge with his head. For a short while there I felt like we were on red alert with his head measurements. Little Bear does have a big head (I think it’s becoming more proportionate though!!) but his head circumference measurement should be leveling out now and should not be drastically increasing. I try to stay on top of the measurements and after November’s appointment with neurosurgery, I feel like I can take a breath. Our favorite neuro nurse practitioner and I went over his chart for a good ten minutes comparing our notes on his head measurements. From this point forward, only three people are going to be allowed to measure his head; me, his surgeon, and our favorite NP. Because there ends up being a huge discrepancy in the measurements since every person gets different measurements, we need consistency AND accuracy for those measurements. It feels uncomfortable to hope that his head will continue to stay steady, but I do hope it will. Even writing that out makes me feel like I’m going to jinx it.

At Little Bear’s next clinic in January, we’re going to start evaluating him for leg braces. His left leg does turn in but orthopedics says that should correct itself. I’ve been playing with and tickling his legs recently in an effort to distract him while I work on some stretches. I swear he has more feeling now in his legs all the way to his ankles. He is definitely ticklish from ankles up to hips on the insides of his legs. The outsides of his legs are where I think the nerves are a bit more damaged. I see his toes move every so often, but I know he only has spots of feeling in his feet. He has started noticing that there are things that exist above him that he’s started reaching for when he is crawling around. I fully expect him to start pulling himself up soon! But this is where things get iffy; we’re not sure how much weight bearing on his ankles he can do. He is definitely strong enough to pull himself up, but can his ankles support that kind of movement? That’s where getting AFOs would be helpful for him. Just to give him enough stability to be confident with standing, walking himself along furniture, and then, actual walking by himself. His therapist doesn’t think that Little Bear will need AFOs permanently. I’ll believe that when I see it though. Phil and I were talking the other night about encouraging him with pushing himself, but also not wanting to be unrealistic with things either. It feels like such a fine line. We know he’s so determined and strong and I think he’s going to surprise up with many things. But I especially don’t want to get my hopes up for something and being heartbroken when it turns out he can’t do that thing. So far my approach has been eagerly watching and helping when he needs help and then celebrating the hell out of whatever he accomplishes!

It is still hard at times realizing he is almost 11 months old and is just now crawling. I know several other moms with kids his same age and they’re way ahead of him with mobility and milestones. I know my Little Bear not only is victoriously fighting an uphill battle with his SB, he also is dealing with the side effects of having been a preemie. Then on top of that, I’ve had two friends had their kids diagnosed with failure to thrive in the past two weeks. It makes me feel guilty because Jamie truly is doing well right now. It makes me ache for those mamas because the mama guilt is so strong. For some twisted reason, failure to thrive ends up being put like it’s mom’s fault. Us mothers are put on pedestal but when something goes “wrong” it’s suddenly ALL the mothers’ fault. So frustrating. But anyway, watching my squishy, thriving Little Bear makes me feel like I should keep quiet about how well he’s doing so it doesn’t make my friends feel even worse. It’s hard to find that balance.

Oh, during the past 6 months since I last posted, I weaned Little Bear. Quite frankly that was one of the best decisions I have made this year. Not only does Little Bear love his bottles, I no longer feel the anxiety and nerve-wracking D-MER I felt when I was still nursing him. Little Bear is eating solids and is starting to be able to handle soft mushy foods such as eggs, rice, potatoes, and a few other things. He doesn’t however like bananas AT ALL. I think it’s a texture thing? He doesn’t like mashed avocados either, but he will eat bites of them if I give them to him from my bowl. He is super interested in food and watches every bite I take in front of him like a hawk.

So okay, long post short, Little Bear is thriving and that makes us feel good. It seems like the year is ending a little less hectically than it started. Phil and I would say that this year has been both horrific and incredibly fulfilling. We’ve faced some of the worst trauma we’ve experienced yet, but also some of the biggest joys and excitement as well. It’s been the hardest year we’ve ever faced, but also the year we were the strongest and are ending it even closer as a team than when we started the year.

Thank you for reading and until the next update!

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Updates on Little Bear

It’s been a month (well, over a month) since I last posted. After April, I had to step back and just find some space to breathe. May was rough, but for a variety of reasons not necessarily connected to Little Bear.

He’s doing well. I hesitate to even write that out, but I think I’m just going to go for it. His head is holding steady. I check it multiple times a day, constantly feeling his soft spot, checking his eyes, looking for signs of returning pressure. All of the scabs have just about fallen off his head incision and his awful cradle cap is almost gone.

Little Bear is a squishy 16 pounds now at 4 1/2 months old. He’s working on holding his head steady when he’s upright, and is pushing himself up more when he’s on his stomach. I found him on his back yesterday! Little Bear had rolled over from his stomach to his back. He looked just as surprised as I was to find himself on his back. He’s working on two bottom teeth, but I’m not expecting those to pop through for another week or two. They’re close, but not pushing through just yet!

We saw Urology for the first time two days ago and they cleared Little Bear of needing to be cathed. There is no reflux in his kidneys, and any urine that collects in his bladder he pees out immediately. That could be an issue when Little Bear is old enough to potty train, but we will deal with that when we cross that bridge! It’s a relief to be done with Urology for the time being. We’re done with Pulmonary, FINALLY got the order to discontinue oxygen even though Little Bear hasn’t been on oxygen now for almost two months. And we’re done with ENT until at least the end of the year. Little Bear’s reflux meds are an absolute pain in the rear end to get, but at least I have a game plan with that now. As long as Little Bear’s reflux doesn’t get worse and we can keep him at the dosage he’s on right now until he’s 10 months old, then we should be able to actively wean him off the meds.

My postpartum depression/anxiety hit a massive low towards the end of May. It certainly didn’t help that my brain decided then to release some blocked memories from about 22 years ago. That meant frantic calls to therapist and midwife asking for help. I’m grateful that Little Bear is doing so well. That means I’ve had the “freedom” to take care of myself without having to focus on him so much and worry about him. A minor adjustment to my zoloft helped and I’m in an okay place right now. Still processing a shit ton of stuff, but at least I feel okay.

I’m afraid I don’t have much more of an update than this. Right now the focus has been simply surviving and trying to take care of myself. Thanks for understanding.