The Answer to "Does It Get Better?"

About 13 months ago I posted the following in the Rare Trisomy Parents group:

"I don't even know how to phrase this question. Verity is closing in on 3 months (on the 28th). That's awesome, of course. But her short life has been filled with things that understandably make her mad, uncomfortable, or both. The latest is the switch from casts to boots and bar, but it seems there has always been something. It's so rare that she's awake and not fussing or screaming. There are times, of course, when she seems reasonably content. But in general, when I think of her time since birth, it seems overall weighted toward the not-so-happy.

Does it get better??? Please tell me some day we will have some tangible reward in the form of positive responses, anything to let us know she is happy to be alive and knows she is loved. Life with a newborn is hard, I know, but my other babies were at least smiling and cooing and making faces back at us by this age. Obviously things are different with Verity, but it would give me something to hold onto and look forward to if I could tell myself something along the lines of, 'In another month or so she will be smiling,' or something like that.

I don't know if my question has to do with developmental milestones you've experienced or if I just need to hear that someday, life is going to be at least a little happier, a little less stressful than it is now. I don't regret the interventions we've done for Verity, not in the least. But...they've certainly been challenging. I'm exhausted, and the feeling of being overwhelmed only gets more powerful as time goes on.

Thanks for listening."

Oh. Oh my. Thirteen months is a long time, but how well I remember my emotional and mental state when I composed that plea for help. This afternoon I spent some time reviewing the answers posted in response to my question of May 17, 2017. I remember clinging to the sage advice and photos of smiling children that came in the form of dozens of comments. Many of those wise, sweet mamas are now close friends with whom I share daily life as we chat back and forth online. 

Little did we know back then that we were about a month away from seeing Verity smile for the first time, about 6 weeks away from hearing her laugh. Little did we know that though it would take many more months, we would start getting some stretches of sleep, even full nights (thanks to nursing help!). Little did we know we would see Verity--a child the head neonatologist suggested would lead a "futile life"--smile, that we would hear her babble and giggle multiple times a day. Little did we know she would light up when seeing Daddy come home from work every evening. 

So...does it get better?

Oh, yes. Yes, it does!!!

This morning, going on about 1 1/2 hours of sleep all night, Verity just cooed and smiled and giggled. I'm not sure how she survives on such a small amount of sleep, but she is certainly a happy girl much of the time, and when she's not, it is much easier for us to figure out what is bothering her. As I finish typing this post, it is clear that Verity is overly tired and ready for a nap--her left leg is kicking, and she is shaking her head back and forth with her eyes rolling back in her head. These are her sleepy cues. Now and then she gives a disgruntled squeal, as if to say, "I know I need to sleep, but I just can't get there yet." And yet...even so...she smiles! My heart is full.

Another time I will post about some of Verity's developmental progress, but today...today I remember how heartbroken I was at the seemingly constant distress our baby was experiencing a year ago, and all I can think about is how grateful I am for simply seeing her smile. 

Recent Appointments

Life with Verity is never dull, that's for sure! We have wrapped up another month of appointments, and here are the highlights.

From the GI follow-up:

• Verity is 15 pounds, 1 ounce! I was hoping for 15 pounds by her 15-month birthday, and she reached that! (May 28 was her 15-month bday!)
• We are back to giving 15ml prune juice twice a day to ease constipation. (We had stopped when vomiting was prevalent after giving it.)
• We are continuing to give her Prevacid twice a day for reflux, not wanting to change that AND her feeding regimen just yet, but hopefully later in the summer we will drop to once a day and see how she does.
• We have begun a S-L-O-W transition to one bolus feeding per day as follows:
• At 11:30am we stop the feeding pump.
• At 12:30pm we begin the bolus feeding.
• The first few days we gave 35ml over a 30-minute period.
• When we tried to bump up to 40ml, she vomited significantly, so we backed down to the 35ml for a few more days.
• Today we gave 40ml but did not compress it to a 30-minute period, instead letting it run at the same rate (70ml/hr), and she did great!
• Every 2-5 days we will adjust the volume OR the rate, working them up slowly to the goal of tolerating 60ml over a 30-40-minute period.
• At 2:30pm we resume the continuous feed (30ml/hour for the next 21 hours).

Overall it is clear Verity is growing and thriving, though we still deal with vomit almost daily and constipation (relieved instantly when we give her a liquid suppository--she just needs help getting it started). She is much sturdier, less floppy, with greater head and even trunk control, but still not able to sit on her own yet.

From the Sleep Clinic Meeting:

• A repeat sleep study has been ordered since so much has changed since our last one in November. (Earliest opening = end of September, but we are on a waiting list.)
• The doctor recommended establishing care with a neurologist, which is something I agree with--she has never been seen by one, but Trisomy 18 kiddos often deal with seizures, and I confess this is an area in which I have much fear over what the future may hold for Verity.
• The doctor also ordered a check of Verity's thyroid levels, which turned out to be normal.
• We discussed the fact that studies show propping kids up (laying them on an incline) during sleep may not actually help with reflux and can worsen the airflow obstruction. We have laid Verity flat ever since, and lo and behold, she has slept better overall!
• She noted Verity's high arched palate and said we may want to address this in the future. She gave me info for a dentist who specializes in this.

From the Surgical Consult:

• Verity's umbilical hernia does not require surgery now.
• If it has not resolved by age 4, surgery may be done to correct it.
• No concerns here!

Whew! Coming up next week is an evaluation with a speech therapist and a check-in with the audiologist to see how things are coming with her BAHA (which she is wearing anywhere from 3-10 hours a day in various stints).