My soul melts away for sorrow; strengthen me according to your word!

This is my comfort in my affliction, that your promise gives me life. (Psalm 119:28, 50 ESV)

Thursday, August 17, 2017

A Day in the Life of Verity

On our family/homeschooling blog, I try every now and then to write a "Day in the Life" post capturing some of the (seemingly mundane) details of our lives during a particular season. It is always a joy for me to go back and reread those posts as the years pass. I thought it might be a good idea to do something similar here on Verity's blog.

I don't know if we EVER have any "typical" days around here...and that is something I would have said even before Verity joined our family! So, after I had snapped a few photos already today, I decided maybe it would be a good day to try...

Today I woke at 5:30am, pumped, showered, and hustled downstairs to take over Verity duty since Ted had to leave for work at 6am. Good thing I hurried, because she was waking up. Ted usually has Verity with him when he is making coffee and working in the kitchen. Last night our sweet Kenna slept on the couch next to Verity's bouncy seat so she could help soothe the baby in order for Ted and me to get a decent night of rest. (I had slept on the basement futon with Verity near me the two nights before that.) We had our bedroom door open and had told Kenna to come get us if there were ANY issues, but thankfully it was an uneventful night...though Kenna said Verity woke and wanted the pacifier about once an hour. She was pretty relieved when Ted came downstairs at 4:30 to take over so she could go to bed!

Anyway. Verity was awake and clearly ready for the day...but NOT for snuggling with Mommy, which is a bit unusual, since more often than not it seems I'm holding her while drinking coffee and attempting to read my Bible and pray without falling asleep. But today, for whatever reason, Verity wanted nothing to do with me in the morning! I finally gave up and laid her on the carpet so I could go get her bouncy seat...and the li'l stinker was as happy as could be just wiggling on the floor! (As you can see from the photo, I had set her feet free from the boots and bar for awhile.)

You can see her feeding tube...the continuous
nighttime feed goes from 9pm to 7am.

Verity was a bit high maintenance later on, but since it was daylight, I was not terribly stressed out--fuss on, sweet babe. Let's work on being awake in the daytime. She did, however, conk out with the 8am feeding...but woke up toward the end, likely because she had to poop, which resulted in most of the 8am feeding coming out her nose and mouth. Sigh. It was a mad, frantic rush to clean her up and get her ready for the day, since I had to leave with her, Charis, and Tobin for a homeschool co-op orientation by 8:40. At least she wasn't dressed for the day when the reflux happened...

Hanging out with Mom during orientation.

Verity was fairly unimpressed with our big morning. I had left Arden in charge of our other younger kiddos, letting Kenna sleep in as much as possible. The kids had a great time from what I hear; I wrote various activities on slips of paper and folded them up so they could choose papers and follow instructions, things like "play hide and seek," "eat a cheese stick," "count by 10s to 100," "build a domino train," etc. It kept them busy until we got home at about noon! Meanwhile, though, we were attending the new family orientation, followed by a tour of the facilities, followed by a whole co-op family orientation, followed by meeting the teachers/paying class fees/etc. A terribly exciting morning, as you can see by Verity's expression below.

I was thankful Verity finally fell asleep and stayed
asleep for most of the speakers!

Verity pretty much slept from about 10:15 until maybe 1pm? She did wake up a bit when we got her resettled in the car seat, but she promptly fell asleep again. It was helpful, though, as I needed to pump and do the lunchtime thing with everyone when we got home.

The 2:00 feeding saw some success with the bottle!
5ml! This is amazing since she hasn't done very
well at all with oral feeds since we moved.

Verity happily did some tummy time on the floor while I put Rhema to bed for a nap (or perhaps Verity just wasn't terribly awake yet), and then we had a wonderful feeding time. She was so alert and happy! (That's what happens when you get a good nap, Verity!!!) Not too long after, though, she started to get fussy. I took her to the changing table; not only does Verity prefer clean, dry diapers, but she also really, REALLY likes lying on this changing table. She looks up at the wall--we think perhaps she likes the contrast of that black frame against the white wall, but it is a consistent thing that she gets very still and quiet when we change her. I wish we could leave her here safely, lol.

There's a reason we posted this verse here!
Special thanks to Uncle Joel and Aunt Sarah
for this sweet gift!

After being gone all morning, I was a pretty popular figure with Zaden and Seanin, who begged me to continue with the activities on the paper slips. So we blew bubbles on the deck (after a minor skirmish opening the bubble containers...who seals those anyway?!) until Verity decided that she had had ENOUGH of that. I worked hard to console her...

She was not pleased with being on my shoulder...

In fact, she wasn't pleased with much of anything.

After trying various things, I put her in the swing.
She was not terribly impressed...however, after
awhile, she did indeed fall asleep!

Hooray! Some quiet time to read together! 

I made myself some iced coffee since it was clear I was not going to get a nap in the afternoon. After Zaden and I took turns reading pages in this wonderful (long) book, I told the boys I needed to work in my office. Verity slept on in the swing while I finalized our Sonlight Curriculum order for homeschool supplies for this coming school year. Yes, I'm a bit late...but we now live in the same state, and anyway, we wouldn't have been ready to start any schoolwork before now anyway!

Believe it or not, Verity slept and slept and slept and was still sleeping through her 5pm feeding! This actually was helpful, since I worked in my office until after 4:30 and dinner required quite a bit of prep. Charis and Tobin helped me start paprikash potatoes while Arden got Rhema up from her nap and kept her (mostly) out of the kitchen. Seanin really wanted to help, so I found jobs to keep his 4-year-old self busy. Verity woke after her feeding and was awake most of the evening, getting rather fussy after dinner while Ted was bathing the littles.

This is the last photo I took today...she's on our bed at about 7pm, grunting while holding in her pacifier. The amazing thing is that she's still wearing the same outfit I put on her at 8:30am! Thankfully no more reflux episodes! Of course...she's been down at 65ml per, I guess I have mixed feelings about that. Sigh.

So, there you have it...a more or less "typical" day with our little princess. Not pictured? Valiant efforts on behalf of every single sibling to soothe Verity during her fussy times. I wish I could have captured THOSE moments on camera, but I will never forget looking over and seeing a big brother or sister gently giving Verity her pacifier, stroking her fuzzy head, patting her tummy, or other sweet gestures. Our girl may be fussy and unhappy much of the time, but she is well loved...and honestly, I think she knows that!

Thursday, August 10, 2017

A Long Overdue Update

Hello, dear friends. I have done a poor job of keeping up with this blog, and while I know we have a pretty darn good list of excuses...

[Moving to a different state]
[Living in transition while waiting for household goods]
[Working to unpack and settle into our new home]
[Dealing with a severe back issue]
[Going to the chiropractor twice a week]
[Rarely actually sleeping]

...the fact is, I really do want to share more details about how Verity is doing since so many prayer warriors care about her [and our family], bless them!!

Picture for cuteness...

In the interest of time, here is a quick rundown of Life with Verity since we drove away from Iowa on July 14, 2017.

  • Verity has not seen ANY doctors since we arrived. This is not really by our choice; it's a long story, but "mistakes were made" and we are having to jump through hoops with our military health care in order to get her to her new Primary Care Manager so that we can then start getting her specialty referrals.
  • Thankfully, we have not necessarily NEEDED to see a doctor (i.e. no illnesses); however, there are some concerns we want addressed ASAP.
  • Probably the biggest issue is that things have drastically changed with her feedings. Whereas she was doing fairly well with oral feeding attempts and seemed as if she would soon make gains, she has instead regressed completely. We have almost given up even trying...except we are determined not to totally give up on the idea of her orally feeding some day. Tongue thrusting, fussing, spitting, spewing, gulping and coughing are some of the ways we can clearly tell that she has not wanted to suck from a bottle. (And yes, I did attempt nursing her a few times, but that resulted in a scream fest each time, and let's be honest...I don't have the energy to do this. I'm done. I'm pumping every 3 to 3.5 hours during the day, so she continues to get breast milk only, but that's it. I'm done attempting to nurse her. Perhaps if she were my only child, it would be different.)
  • Besides the rejection of bottle feeds, we ended up dropping the volume of her feeds because Verity started having terrible reflux, as in projectile vomiting through the nose and mouth what seemed to be the entire feed amount. We had worked her up to 75ml but then backed off once the reflux began, even going as low as 60ml. She is back up to about 70 now, though we are keeping the 8pm feeding at 60-65 since 8:30pm seems to be the Vomiting Hour. She is still on a continuous feed at night that goes over 10 hours. The total volume kind of depends on how much I've pumped that day but can be anywhere from 200-240ml total, so 20-24ml/hour.
  • Verity's hernia at her belly button seems to balloon out uncomfortably. The surgeon we met with on July 13 (who was doing a follow-up to the g-button surgery, during which he also repaired this hernia), said that sometimes this happens and it usually resolves itself. I don't know anything about this issue, but it looks uncomfortable to me, and I would like some input as to whether it could be hurting her at all.
  • We have passed the 12-week mark for Verity to wear her boots and bar 23 hours a day. Technically we are supposed to keep her in them constantly until we get the OK from an orthopedic doctor that we can go to naps and nighttime. But--shhhhh--we are often letting her be barefoot and fancy free while she's awake anyway. Those little feet look pretty good to me, and besides, it helps her be more content. Which leads to the last major bullet point...
  • Since arriving in Colorado (a rough estimate), and particularly this week, Verity has seemed to get progressively more miserable. At first we wondered if it were due to the altitude change. Now we just don't know. Perhaps it's altitude; perhaps it's a combination of some of these other factors. Maybe the pressure change is causing pain with her little tiny ear canals. Whatever the cause(s), in general, Verity is not a happy baby. She's a far cry from the contented cherubs we've raised before, babies who got into a good routine early on and loved life. And because she's so unhappy, she doesn't sleep. Oh, she naps here and there, but it's not a deep, restful sleep. And therefore her parents don't sleep. 
I won't take time to outline all the things we've done to help Verity (and us) rest better. Suffice it to say we have probably tried everything, though I'm sure there are other options we could pursue. The point here is that this has been a consistent problem for months, and while it could very well be as simple as "it's a Trisomy 18 thing," my concern is that there is something causing her distress, and I want answers. It is an awful, awful feeling to listen to your baby scream and not know how to help her. Every day is different, every night is different--what works one time won't work the next. 

This week has been particularly brutal for some reason. Whereas often Verity will sleep for 2-3 hours before starting her "night time fussies," this week she has not had any stretch longer than about 40 minutes during the night, with every 5-20 minutes being the average "sleep" interval.

I realize I wrote above that Verity hasn't seen any doctors--however, I did take her to my chiropractor on Monday. She did a wonderful session on Verity, addressing her hernia, her esophagus and midline, and some neck and cranial work. I was so hopeful that it would result in some better sleep! Alas, starting that night things were worse! Dr. Molly encouraged me to bring Verity with me every time I have an appointment so that we can continue to work on her. I am grateful for a caring staff in the Thrive Health Systems who are helping not only me but also our kids. 

So, that's where we are at. Once we get into the system at our new military treatment facility, I have a host of appointments/tests I plan to ask for, including: 
  • GI--let's see why reflux is all of a sudden an issue
  • Ortho--can we graduate from boots and bar 23/7 to naps and night?
  • Cardio--we need a baseline echo so we can keep an eye on her heart
  • Swallow study #2--this was recommended to us before we moved and will hopefully give us some clues regarding the oral feeding issues
  • Sleep study--now that she's older, I'd like to see if she is dealing with any kind of apnea. (The NICU staff assured us that it wasn't an issue while they were observing her back in March.)
Any Trisomy mamas who happen to be reading this...would you add anything to this list? 

Thank you for reading this far. And thank you for praying us all along this journey. It's definitely a stressful season for our family. Now that we are a little more settled, I will try to put some of my current thoughts and feelings into words on this blog...meanwhile, here are a few more of my friend Melissa Pennington's beautiful photos of our Verity. Stay tuned for more in future posts! :-)