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! :-)

Thursday, July 6, 2017


The last week has been insane with pack out activities: getting ready for yet another military relocation now that Ted's two-year command tour is officially over. I'm in my house...alone...and I don't have to be anywhere for an hour and a half, so it's the perfect time to sit, breathe, and reflect a bit. You're welcome to join me for awhile. :-)

Twenty years ago, on June 28, 1997, I became the luckiest girl on earth. That's the day I married my Ted, the day I stepped blithely into the role of Air Force wife, the day that would seal my fate as an eventual mother of nine...NINE?!?!...children. (Oh, if you asked us back then, we would have told you that we planned to have two, MAYBE three children. If you don't know our story, maybe someday we can have a long visit over a good cup of coffee!)

I had no idea what I was getting into. This military life is not for the fainthearted. If I had known some of the difficulties we would face, would I still have said "I do"?

Absolutely. And I would do it all over again. One thing I've learned...each challenge that we have muddled through has only made us stronger as individuals AND as a couple. That's not a credit to us, because we are two incredibly sinful, weak people. Our journey with Verity has revealed ugliness that is all too easily hidden in relatively "easy" times.

But we have received grace upon grace, praise Jesus!

And so here we are, celebrating our 20th anniversary, which coincided with the same date as the Change of Command ceremony, at which my husband relinquished command of the Best D*** [insert kind of squadron here] Squadron on June 28, 2017. It was a wild and wonderful ride, an incredible opportunity for Ted, and though there were sticky situations and a number of sobering events, we are thankful that overall, this was a really great assignment. And I think it's completely kosher (not to mention unbiased!) for me to say that morale and production soared under my husband's leadership.

Here he is, my amazing husband. He gifted me a beautiful pendant during the Change of Command ceremony in honor of it also being our 20th anniversary. Shown below is the cross necklace with ruby in the center: Ted's gift to me on our wedding day was a specially made cross with a ruby from my
grandmother's engagement ring at the center. We used that engagement ring, but Ted replaced
the middle ruby with a diamond. That necklace was sadly stolen from our house when we lived
in Italy, so Ted decided to build upon his original design! This one has the birthstones of our children surrounding the ruby.

After the ceremony, we celebrated with friends and family at a park, and then he and I escaped for a much-needed overnight alone, the first since our anniversary in 2014.

What a lot to celebrate! An ever-deepening marriage relationship and a successful completion of a command tour that also completes 20 years of active duty service.

But wait...there's more!

In our family, the 28th of any month is now a reason to celebrate! And on June 28, our little Verity turned four months old! All of these milestones made her pretty sleepy...I didn't get any photos of her with her eyes open that week, it seems! We had out-of-town guests, some dear friends from our previous duty station, who visited us and got to attend the Change of Command and did a lot to help us prepare for our moving week(s). One of their daughters, Sasha, brought a whole bag of handmade goodies for Verity, which you can see in the photo below. This little girl! So loved and prayed for! Sasha and her siblings (and parents!) have joined the ranks of those who have been blessed by our little Verity in person.

As I close this post and prepare for a homeschool moms' night out, I can't help but tie these two precious people together: my husband and Verity. I remember when our oldest was born (October 18, 2000) and watching Ted in the hours and days following our daughter Charis's birth. He was so gentle and caring, so perfectly natural in this new role of Daddy. I remember feeling incredibly grateful upon learning that this was another dimension of my husband that I would get to see and love, a role that I had no way of (truly) knowing about ahead of time. I mean, you can assume and hope that your chosen life partner will be a good parent when the time comes, but you can't REALLY know until it actually happens.

I've seen heartache and desperation exuding from Trisomy parents who are all alone in this journey. Whether it's a spouse/significant other who walks away during the pregnancy, saying in effect, "I didn't sign up for this," or whether it's an emotionally distant partner who refuses to be involved in the all-consuming care a special needs child heart goes out to the brave warriors who soldier on, choosing life for their babies and doing what it takes to give them love and care despite the immense burdens they bear alone.

I can't even imagine doing life without Ted, let alone life with our special needs girl. From caring for the g-tube site to being able to prime and start a feeding tube in his sleep, from gently strapping boots onto her kicking little feet to bathing and bottle feeding, Ted is as much of a part of Verity's care as I am. He talks to her, sings to her, dances with her (or makes her dance!), and loves her just as much as he loves each of our 8 other children. He's exhausted most of the time because he is probably awake with Verity at night more than I am (mostly because I wear ear plugs because of his snoring, lol), but he just keeps on...keeps loving all of his crazy, chaotic family, loving us even at our lowest and calmly encouraging us forward.

Ted, thank you for your willingness to command the craziest squadron of all: your family! Thank you for being such a loving, faithful, committed, and involved husband and father. I love you more than I could ever say.

Tuesday, June 20, 2017

A Glimpse into a...Normal...?!...Morning

I have so many unwritten posts I'd love to share on this blog, if for no other reason than to sort through my own often contradictory thoughts and feelings. There seems to be continuous material of the regular updating sort, news from appointments and so on, and since I so rarely have both of my hands free (not to mention my lap) at the same time, I don't really have the chance to sit down and type the way I did during my pregnancy. Not only does Verity demand my hands and lap, but now that she is very much present in our lives, our other younger ones seem to be even more needy, somehow paranoid that Mom is going to leave again, and so they vie for my hands, lap, and attention more than ever.

Anyway. I posted the following as my Facebook status earlier this morning, and I thought it was worth copying and sharing here for those who don't use Facebook or who missed the update (how is it that we sometimes feel more unconnected than ever despite all the social media outlets?!).


A glimpse into my morning, as I fumble around following a night of being awakened 1-2 times every hour...I hope it can bring some smiles and encouragement to you, even if only by thinking "Thank goodness I'm not in her shoes," LOL!

7:45--begin prepping Verity's 8am feeding by changing out the feeding pump bag and warming her milk. Quiet kitchen aside from...some...odd noises?? Ice maker?? Huh.

7:55--start the dishwasher and prepare to bottle feed Verity along with her pump feeding

7:56--shriek in terror as an unexpected flash of fur skitters across the kitchen floor. MOUSE! This explains those noises; the dishwasher must have "flushed" it out of its hiding spot.

7:57--somewhat frantic search for the beast, although I have no idea what to do with it if I were to find it; I'd almost prefer to let it disappear...I'm sure the neighborhood cats that poop in our yard can take care of it as soon as it finds its way outside...

8:00--return to Verity, start her pump feeding, pick her up to hold her and bottle feed her.

8:10--we have not made much progress with bottle feeding, but Verity is very much wide awake and not unhappy, so I'm enjoying this time with her on my lap.

8:15--Verity unconcernedly relieves her bowels. Ummmmm. I really do not like what I am feeling on my BARE LEGS!!!! At least she was lying across my bare legs instead of my shorts?! Uuuuuuggggggggghhhhhhh. Holler for help finding and bringing baby wipes.

8:20 and following--we have finally located wipes and I am cleaning my legs and preparing to clean Verity. This is a ridiculously long process as we try to extricate her from her poopy night dress and keep the feeding pump away from the poo. Adding to the chaos: the feeding pump starts chirping that it's out of food, because I haven't had a chance to pour from the bottle the remainder of milk that Verity didn't take during the bottle feeding portion of our time together. This means there is now air in the line and I need to disconnect from her g-tube, prime the tubing, and restart the pump. Easy enough, but it takes time and I am working with a wiggly, poopy baby and her poopy mess of a diaper, dress, changing pad, etc.

Meanwhile...upstairs...Rhema is waiting in her crib (I usually try to get her ready for the day and in her high chair before the 8am feeding, but we got sidetracked today). Bless her heart. She waits patiently today (not always the case) until I can get up there with Verity, who obviously needs a change of clothes. Verity gets a new outfit and lies contentedly on her tummy while I retrieve Rhema. She ALSO is a poopy mess. (Send note to husband: we are nearly out of wipes, and THAT is a pooptastrophe.)

Back downstairs...two girls with clean bottoms and clothes. Rhema is ready for cereal. I pray with her (Lord knows we need a lot of prayer today and every day), the 3rd or 4th little breakfast prayer I've done since it is summer and my younger children have apparently conspired to come to the kitchen at completely random times rather than in a convenient herd, when they can help one another. (Note to self: this needs to change! It may be summer, but Mama needs some kind of consistent schedule!!)

Verity is in the swing. Rhema is eating. Seanin (3yo) is off sulking because I wouldn't copy a coloring page for him. Zaden (5yo) is still waiting (with extraordinary patience!!!) for me to get a new jar of milk for him. Doh! I take care of him and praise him for waiting so patiently without adding to the meltdowns we've already experienced this morning. I start a load of laundry--hooray for me for procrastinating so that I could add the poo items to the load! The oven timer is going off--time to get the bread out of the oven before it gets so hard no one wants it for sandwiches at lunch time.

Reposition Verity in the swing--propping the pacifier back in her mouth. Clean Rhema's sticky hands. Try to placate the 3yo who is still sulking over a nonexistent coloring page. Decide to skip breakfast and fast because it's approaching 9:30 and Zaden is now asking to do his Bible Bee study for the day, and how can I say no to that?! Hold Rhema in my lap while listening (and helping) as Zaden reads aloud Genesis 1:6-19 from my ESV phone app. I'd prefer a real Bible, but my ESV is upstairs and I can't afford to go get it--another crisis would certainly ensue, and poor Zaden would be waiting for me YET AGAIN. We get through lesson 1 of week 3 (yay--this child is right on schedule!) and are reminded that what God made is GOOD and that He is OMNIPRESENT.

This means that GOD is PRESENT in all of this mess and chaos! And unlike Adam and Eve, I don't need to feel ashamed and hide, because my Savior has already covered all my sins. I welcome the reminder that He sees me in the muck and loves me despite my heavy sighs over poop messes and inward laments about just wanting to sit and eat in peace. I pull the 3yo on my lap and assure him we will have some special time together after I pump milk for Verity and eat my breakfast (now at 10am) that my dear 16yo daughter made for me.

And with that...I will sign off and eat said breakfast and hopefully have some time to talk and plan the day with my teens! (Lest you think they've been lazing in bed all morning, Tobin has already finished history and math, Charis has cooked us breakfast, and...actually, I have no idea what Arden has done, lol. 10yo Kenna was upstairs helping me during the mouse and baby wipe crises! I really do have awesome and helpful kids...of all ages.)

Tuesday, June 13, 2017

Children's Developmental Clinic

At the end of May we had the opportunity to spend the morning in the Children's Developmental Clinic, an all-in-one-day approach where various doctors came to our exam room instead of us going all over the place to visit with specialists. We had been referred to this specialty clinic back during our NICU stay, when we met with the geneticist who works with this team. Anyway...initially our appointment had been set for July, AFTER our moving date! Thankfully we caught the mistake (our own paperwork listed June as the appointment date), and they were able to work us in May 31.

Verity and I were up early to prepare for our big day. (Ted and 4 of our kids were in Colorado for a family visit and house hunting trip. We have a rental--hooray! Looking forward to being settled in our new home with mountain views! But I digress...)

As you can see, Verity was exhausted from getting up early, ha! Actually, if I recall correctly, due to a concentrated prayer effort (I believe!), Verity actually let me get a decent night of sleep the night before this long day...a much-appreciated gesture, to be sure, after a number of horrific nights while single parenting.

We first met with a pediatrician for an overview. He showed me Verity's growth chart--at 8 pounds, 11 ounces, she's still a little peanut for a 3-month-old, but he was pleased with her growth curve, as it is proportional and definitely trending upward. I spoke with him about her seemingly unending fussiness, and he said that if it doesn't improve after some more time, he would look into possibly trying reflux medicine, but he wasn't sure that was the best first option. Overall, he was pleased with her progress and her appearance, which of course was incredibly encouraging to this mama!

Next we saw an orthopedic representative. Our doctor who did Verity's castings and tenotomy wasn't available, having had her own baby a couple of weeks prior. The lady who came in admitted that the boots and bar wasn't her specialty; when I asked her about how to better help Verity's feet stay IN the boots and avoid pressure sores, she called in a man from orthotics who ended up being my favorite person of the day: he took one look at Verity's bar and pronounced it TOO LONG! He took it to his shop, shortened it maybe 2 inches or so, and voila! Soooo much better! In fact, Verity spent most of the rest of the day sleeping, lol. Clearly it wasn't the cure-all, as she is still a terrible sleeper at night, but it has helped tremendously with her overall well-being. And Jim also gave me lots of great little tips for getting the boots and bar back on without so much of the trauma-and-tears routine. I am so very grateful. Below you can see a side-by-side comparison of the before and after bar.

Next up, a physical therapist. Her recommendations for Verity included ways to help her do a "push-up" kind of motion to develop those muscles. After 30 years in this profession, she clearly knows a lot and has a lot of practical wisdom, such as trusting our own parental instincts and asking therapists about research to back up their suggestions (or preferences). Best quote: "She is so precious! Your main job is to love her." Aaaaaahhh. More wisdom included to keep on keeping on--keep doing what we're doing; let Verity lead but also let her go at her own pace. Wonderful advice.

The occupational therapist also gave some great practical tips. Since tummy time is not a favorite for Verity, she recommended doing it at each diaper change, just a quick, short burst that would make it part of our routine. For Verity's clenched hands, she suggested a small bit of cut up cloth to roll up and put inside her hands to help with the sweat and skin breakdown as well as give gentle stretching for her fingers. Also recommended: lotion massages, starting at the shoulder and working down to the hands to help relax them and allow us to open up her hands a little more easily. [As a side has now been almost 2 weeks since we were at the CDC, and I confess I have NOT yet done the cloth-inside-the-palms thing, although I did locate and wash the washcloth I intend to cut up for this task!! But, on the plus side, her hands have been so much more relaxed recently, allowing us to work our thumbs and sometimes plastic toy rings inside for her to "grip" and do a bit of "tug-of-war." So...we are making progress anyway!]

The genetics team visit was a very short one; I hardly have any notes. I did learn (upon questioning) that they aren't really interested in pushing for more testing to see if Verity truly is a full trisomy 18 or if she might be mosaic. (Some have questioned, because she is clearly doing much better than many FT18 babies...or at least better than a FT18 prognosis.) Otherwise, the only things I wrote on my note sheet were to "keep doing what we're doing" and "keep the bar of expectations high."

Finally we saw a social worker. Since some folks had recommended looking into respite care, I did ask what she knew about that, whether military coverage allows for anything like that or not, since we heard at one point that Tricare doesn't pay for home visits from nurses (back when we were trying to figure out if we could learn to place the NG tubes ourselves). She said the EFMP folks (Exceptional Family Member Program) would be the place to start asking and that with programs like the ones that pay for respite care, generally the funding is available but it's usually up to the parents to actually find the caregivers themselves. The Colorado Early Intervention people could probably give us referrals. Obviously this isn't something we have time to investigate before our move (which is happening in just about a month, eeeek!). Thankfully, though, we have been blessed with an amazing church family, and Verity has had several overnights with loving ladies who have offered to give us the gift of sleep!

So! That's the story of our visit. We were there a total of 4 hours, and it was all positive and encouraging feedback.

Wednesday, May 24, 2017

Hearing Screening

Because Verity failed her newborn hearing test, we had a thorough testing session scheduled yesterday, followed by a consultation with a doctor. I drove to where I thought the appointment was (same Boys Town Research center as the GI doc we see) only to learn that I should have gone to the downtown location. Oops. Thankfully it wasn't a problem (other than driving for an extra hour plus pushing everything back, thoroughly filling my afternoon!)

Verity had to be asleep for the test, and thankfully she did great. (Maybe we should have them test her during the night, lol.) Of course, it helped that I held her and kept her pacifier in her mouth while sitting in a cushy armchair. I think I got more sleep during the test than I did the night before, ha!

She had an Auditory Brainstem Response (ABR) test: "electrodes on the head pick up the brain's response to sounds presented to the ears. This test can provide information about the amount of hearing loss and how well the hearing nerve is working."

Because the initial responses showed between moderate to severe hearing loss, the tester then placed an electrode (held in place by another person) against the bony part of Verity's head behind her ear to see whether there was a true lack of ability to hear or whether perhaps the difficulty lies in her teeny tiny ear canals or possibly fluid in the ears.

With the second portion of the test, they determined that Verity is in the normal range for hearing low frequencies, and only in the mild loss category for higher frequencies.

At this time, there is really nothing to do other than wait for Verity (and her little ears!) to grow. Her canals are SUPER tiny, not uncommon for our T18 babies, and it is possible she will later have tubes in her ears and/or wear a BAHA (bone-anchored hearing aid) headband, but she will need to have a bigger head, lol, plus be able to sit up.

Meanwhile, it helps to know that her left ear is better able to hear than her right, and that when we talk with her, we need to talk in a fairly loud speaking voice and try to minimize distractions in the background. (I know, right?!?! Bwahahaha....)

Monday, May 22, 2017

Boots and Bar

May 16, after 7 weeks in casts, Verity was set free...for a few minutes, anyway.

These little feet have come a long way in a short time. [The marks, by the way, are the initials of the doctor who did her tenotomy surgery. Not surprisingly, Verity's skin was extremely dry!]

For the next 3 months, we are in the "boots and bar" phase of the clubfoot corrective measures. Roughly 23 hours a day she has to wear these. See how excited she is??!

Yeah. That makes my hips and knees hurt just to look at her. Poor baby.

The good thing is that she has learned to sleep on her back for the first time! Now that reflux is no longer such an issue for her, it actually seems more comfortable for her to be on her back. Sometimes. Maybe.

Actually, our poor girl is pretty miserable most of her waking moments, especially when it's time to "reboot." I'm not sure how she manages to get a little foot slipped out from time to time, but it happens. And regardless, we check her feet several times a day to make sure she doesn't have red spots indicating pressure sores. (She has a few times; we've learned how to take better precautions to avoid that and are getting better. Of course, now the leather straps are stretching, so we have to figure out just the right hole for buckling.) During the rare moments her feet and legs are free, we try to do some mini-therapy sessions: giving her time on her sides, stroking her feet with various textures, moving her legs so her toes go up toward her face, etc. That part is fun. Strapping her in correctly while she is thrashing her legs and screaming at high volume is not.

Nights are pretty brutal. Days can be difficult, too. She is happy (or at least moderately content) only if someone is holding her and/or holding the pacifier in her mouth. (She can't keep it in her mouth on her own very long at all.) She does nap during the day (like now...otherwise I wouldn't be typing); I suppose we could say she naps at night, too. It's disappointing, though, when we had gotten some decent stretches at night before the switch. We were hoping that after a few days/nights it would get better, but no luck yet. We are hoping and praying she will get used to this sooner rather than later...Mommy is ready to throw in the towel and say forget it already, but I'd hate for all of this to be in vain. Even after the 3 months of constant wear are over, she will still have to do boots and bar for nights and naps...just when we want her to be content and sleeping. <Eye roll>

Prayers for our patience, perseverance, and a decent amount of rest to facilitate a decent amount of brain activity would be greatly appreciated!

Thursday, May 18, 2017

Where I'm at...All I Ever Wanted Was a Croissant

This photo...isn't it sweet? Kenna took it for me the evening of Mother's Day.

That was a good day. An early morning walk in cool and windy weather; breakfast cooked by my husband; actually sitting through a whole church service; a yummy crock-pot lunch; a giant paper sack card with markered messages from my kids (I may need to go over the yellow and orange ones with pen so I can read them again someday, lol); some afternoon down time; a relaxed outing with the family (complete with the inevitable meltdown from the 3yo who decided he didn't want to walk after all); and some uninterrupted cuddle time with my baby girl, who melted my heart by grasping my finger with hers. (A privilege not to be taken lightly--her fists are still tightly clasped most of the time.) is a hard day. Not so much physically; Verity seems to be resigned to her new boots-n-bar fate (that's a blog post for another time). But emotionally. Mentally. Spiritually. Well, yes, physically too, because all of this is so exhausting. I just want to sleep.

There is much I could write. Much I have wanted to process through writing. Much I am willing to share...when I can. But for now, I will share this...

[If you haven't yet read or heard the "Welcome to Holland" parable, please read it first. It's very short.]

This response by a special-needs mama, "It's Not Holland," so perfectly captures what our lives are like nowadays. It is also very short.

Once you read this, you'll understand what I mean when I say that today is a day when I'm shouting inside, "All I ever wanted was a croissant!"

Friday, May 5, 2017

G-Tube Surgery = Success

Monday was a big day for Miss Verity! If she were able to retain and speak about the memories of her experiences during our hospital stay, she would probably first mention how incredibly hungry she was for most of that time, lol. We had to end her feedings by 8am, with surgery prep beginning at noon and the surgery scheduled for 2pm. Unfortunately, the previous surgery ran late, so Verity's didn't begin until 3:00.

The nurses adored and fussed over Verity!

Waiting comfortably in Daddy's arms.

Ted and I waited about an hour while Verity was in the operating room. I confess I was a bit anxious; my stomach was in knots all throughout the morning. It was hard having our baby go into surgery, knowing she would be under anesthesia. Thank the Lord, all went well, and after it was all over, a nurse took me back to the recovery area, where I got to hold Verity and comfort her. I was so thrilled to see how she clearly responded to having Mommy hold her--there was a noticeable difference compared to when the nurse was trying to calm her! I loved that she relaxed in my arms and became more peaceful.

We were only in this "holding area" about 15 minutes, and then Ted joined us and we moved to our overnight room. It was nearly dinnertime by this point, so we got Verity settled and then parted ways: Ted to go home to take care of the rest of the family (who had been holding their own all day, bless them!) and I to the hospital cafeteria to grab a soup and salad to take back up to our room.

Verity was not very happy when I returned and took over from the nurse! But rocking and singing to her helped. I ate my dinner very slowly, one-handed, over the course of an hour and a half before she calmed down a bit. She had to wait 6 hours before feeding, and then when it did start, it was to be the slow, continuous feeding that we typically do at nighttime. That seemed to make sense and lined up with our usual schedule; we began the feed at 9pm, and I pumped and hoped to get a bit of sleep.

HA! By midnight it was apparent that Verity was not interested in sleep whatsoever. She seemed to be in considerable pain, at least according to her screams. (There is nothing wrong with her lungs, that's for sure...) We ended up giving her some more pain medication, but she continued to be unhappy. The nurses were tag teaming with me, trying to help soothe her, but nothing was helping. They wondered if her tummy was not doing well and stopped the feeding, restarting the IV instead.

The night was a blur...there would be times when she would seem to settle, just enough for me to crawl onto the sloped couch, spread a blanket over myself, close my eyes, and...jerk back to reality when she screamed again. I think they did restart her feed at one point only to stop it again. They found an infant swing to bring in when I mentioned that she usually sleeps in our swing at night. That helped for a bit as well. But nothing helped longer than a few minutes at a time.

I was sure that Verity just needed a good meal! Of course I don't doubt she was experiencing pain as well, but by 5am, when she was just plain mad, I begged the nurses to PLEASE resume her feed. Imagine if you hadn't eaten for 13 hours, and then when you were finally allowed to eat, you were given one bite of bread every 10 minutes. Would that help you?! I think not! That must be similar to how Verity was feeling! Girlfriend likes her food!!

After going up the chain of command, we got the approval to resume the feeding and stop the IV. (You may hear my eyeballs rolling here...why would a mama not be allowed to feed her baby?! Yes, I understand the surgery and all...but really!) So feeding resumed...and she fell asleep. Hooray! At 6:10am the residents barged in to wake me up and ask me questions. Having just gotten about 20 minutes of sleep (double the amount I had gotten the rest of the night), I was rather disgruntled, and even more so when I realized they had awakened Verity, too. UGH. I held her in the rocking chair and we both dozed off and on until they came an hour later to stop the continuous feed.

But! Proving my point, at 8:00 when we started her full feeding (60ml over a half hour), oh! Was she ever so much more content! She did continue to make little shuddering sighs/moans now and then, similar to the nights after she got new casts on her feet/legs. But it was SO much better. Her little voice was hoarse from all the screaming during the night! By 9am she was resting well enough that I felt comfortable telling the nurse that I was going to go grab breakfast.

In the cafeteria I was able to meet up with another T18 mama! Paige and I had connected via Facebook soon after our diagnosis, and I've followed Addilyn's journey online as well. It was nice to meet in person and chat awhile!

Back in our room, I prepped for Verity's 11:00 feeding, during which I received the G-tube training needed to bring our girl back home and care for her ourselves. I posted this video on Verity's Facebook page with permission from the mama who made it, so if you're curious about what exactly a G-tube is, what it looks like, and how it works, take 6 minutes and check it out! I watched it before the consultation with the surgeon and then showed it to Ted the day of Verity's surgery. It's interesting and was super helpful for me in mentally getting ready for this change.

This is how I found her after I got back from breakfast;
I don't think she missed me a bit!

Ted arrived after his morning work meeting, so together we went over the instructions for using the G-tube for both feedings and medications, cleaning it, venting it (when her tummy needs to release some gas), and general site care. I was just so eager to leave the hospital and get home to NAP!

Now we are at the end of the week. I am happy to say the G-tube has not been yanked out, lol, and Verity's pain seems greatly subsided. I'm still cautious with holding her and don't even like to put her up on my shoulder to burp in case it's still tender. We give her an extra layer of cloth over the belly area when buckling her in her car seat as well. At the 2-month check-up yesterday, our pediatrician said the site looks good. There is some redness but not bad, and some inflammation is to be expected.

We continue to work on oral feeding as time and interest allow, but in the meantime, what a relief to finally be rid of the nasal-gastric tube and see Verity's sweet little face!

Sunday, April 30, 2017

Very Quick Update

Charis and I returned today after a few days in Kansas City for the Region V NCFCA tournament. It was refreshing to have a bit of a break, even though our days were full, but I will say I was happy to see my other 8 children when I returned! (And as an aside, may I take a moment to brag on our daughter placing 2nd in the Apologetics category?! Proud mama here!)

Verity's feeding tube got blocked again last night, so Ted got to make a trip to the ER this time. I got his text as we were waiting for the tournament awards program to begin. We were so glad we had asked for them to keep an extra one in the NP's office! It was a much quicker visit than the week before when I had taken her in for the same issue! Thank the Lord this will all be over soon...if we can just keep that feeding tube in another 13 hours, we will be good, ha!

To prepare for the G-tube surgery tomorrow, Verity has to stop eating by 8am, only clear liquids from 8-10am (but I don't know that I want to go and buy PediaLyte?!), with surgery prep beginning at noon and the procedure scheduled for 2pm. I will need to stay overnight in the hospital with her. I have no idea what time Tuesday I'll be able to come home; but I do hope and pray we CAN come home on Tuesday, as that will mean there are no complications.

Please pray with us that the surgery goes well and that there are no problems with Verity being under anesthesia.

Thursday, April 27, 2017

GI Scope & G-Tube Surgery

On Monday Verity and I returned to Children's Hospital for a GI evaluation. She had to stop eating 4 hours beforehand, but thankfully she was pretty sleepy in the early morning. The scan itself didn't take very long, but it was strange and a bit sad to see her strapped on her back to a board with large velcro bands covering her tiny body! Her arms were raised so her little clenched fists were above her head. Once the doctor was ready, the tech rotated her on her side and fed her barium from a bottle. I was glad to see that she did suck and swallow from the bottle! After a bit of this, they did switch to a syringe. Similarly to the swallow study, we watched as the barium made its way down her esophagus and into her belly, but then it went further: her stomach seemed to swell up like a balloon as the barium filled it and made it light up on the screen.

Verity was such a little trooper. She had some reflux, and since she had been dealing with congestion for a few days anyway, it was a bit of a mess that I got to clean up and comfort her before we continued the test. After her tummy was all the way full, we waited and watched...and we did see some reflux that didn't come out of her nose/mouth. Granted, she was flat on her back, a position we NEVER have her in when we normally feed her! But still. It makes me wonder how often she deals with reflux like that.

The results of the test were then sent to the pediatric surgeon, with whom we consulted the next day. He agreed that the risks of a G-tube surgery would far be outweighed by the benefits to Verity, as she is doing so well overall. I was so pleased that he had obviously read some more current research about Trisomy 18, and we were on the same page as far as proactively improving her quality of life. I really liked this doctor--once again, we are so thankful for God's guiding hand in allowing us to meet with caring, compassionate doctors who are working on Verity's behalf rather than fighting us as so many in the medical community do when it comes to children with "dire" diagnoses.

The surgery could have been done the very next day had it not been for the fact that Charis and I left yesterday to travel to her regional speech tournament! So the surgery date is set for Monday. We would appreciate prayers for the doctor and medical staff as well as for Verity to do well under anesthesia and to recover quickly. The G-tube will allow us to pump Verity's food directly into her tummy, freeing us from the horrors of the NG tube she has had since birth!! I am grateful for the feeding tube for keeping our baby girl alive, but I will NOT miss the paranoia we have lived with being worried that it might come out, even more so now that she is alert more often and flailing her arms and hands so much.

We will continue to offer food orally--from the syringe and/or breast prior to starting the feeding pump. We will use the same feeding pump with her G-tube that we use now with her NG feeding tube. I will try to post a video showing you how we currently do feedings for those who haven't seen anything like this before. It was completely new to me when we began caring for Verity outside my womb...almost two months ago now! TOMORROW IS HER TWO-MONTH BIRTHDAY!!!!!

Sunday, April 23, 2017

Swallow Study

Thursday was Verity's last appointment for the week, a swallow study to evaluate whether she is ready for/capable of eating orally. She wasn't allowed to eat anything for 3 hours beforehand, so we adjusted her feeding schedule accordingly. Since the appointment was in the morning, she was still pretty sleepy (she does her best sleeping after we wake up for the day!!). In fact, it was kind of hard to get her to wake up enough to feed well enough for the doctor and therapists to see much!

We started by using a tiny syringe to squirt a special liquid in her mouth with barium (I think?!) to make it show up on the X-ray. Once they were able to view her swallowing from the contents of the syringe, they moved to a bottle. I think she would have done better with this if she had been more awake, but at least the main encouragement was certain: there is nothing structurally that would prevent Verity from having oral feeds. This is definitely good news and encourages us to take the next steps and work hard to make sure she doesn't end up having oral aversions, as many Trisomy kiddos experience.

Can you see Verity's feeding tube?!
Her nose is pointing toward the left.
So, our plan for now is to start feeding her with the little syringe (1ml) about 10 minutes before normal feeding time. We will give her however much she will take until feeding time, and then do the rest via her feeding pump (currently using the NG, or tube through her nose, but planning to move to a G-tube which will feed the stomach directly). So far 3ml seems to be about her limit, but the good news is that she really enjoys it, though she has started to sputter a bit and not do quite as well toward the end, so it has been pretty clear when we need to move on. The nice thing about this transitional step is that we can involve the older kids, too!

I am also encouraged to continue attempts at breastfeeding, although I'm not terribly optimistic about this as she hasn't latched at all since before we left the hospital. We also have a preemie nipple we can use when we think she might be ready to try a bottle. She continues to suck well on her pacifier (though we have to hold it in her mouth).

I confess I am excited to get rid of the feeding tube; it is awkward and of course always keeps us on our toes trying to make sure it doesn't get dislodged. But I am equally excited about the opportunity to have some normalcy with feeding times! As Verity grows stronger and more alert, we look forward to feeding her in a manner more similar to her older siblings.

Friday, April 21, 2017

Heart and Heels

Tuesday was a very long day but overall a success! In the morning Verity had another echocardiogram, which the cardiologists evaluated immediately and then met with us afterward. Some of the problems that were present at birth have completely disappeared (thank you, Jesus!). Two tiny ("pin-prick") holes remain, but they are insignificant and are not causing any problems at this time. Moving to a higher altitude will not present a problem; in fact, it may be even better for Verity! We are all looking forward to relocating to Colorado, even though it is always a chaotic time, getting ready for a PCS (permanent change of station). The doctors recommended that after we get settled, we get another echocardiogram so the cardiologists there will have an up-to-date baseline from which to monitor Verity.

So Tuesday morning was easy! We even finished early and had time to grab lunch in the hospital cafeteria (surprisingly good) before checking in for surgery--a tenotomy, or releasing of the Achilles' tendons, the final step in the Ponseti casting method for clubbed feet. (Well, almost final, I guess, if you count the fact that she will need special shoes and a bar afterward.) Here are some photos of the progression...I didn't think to take photos each week in the same position, but you can get the idea...

Prior to any orthopedic work--this was at a regular check-up.

First casts

This is after the 2nd set of casts came off, so
two weeks in casts total.

After 3 weeks/3 sets of casts, side view.

After 3 weeks/3 sets of casts.
The last two photos were taken the day of the surgery. (Humorous bit: We were in the operating waiting area when we were told that they weren't sure what to do about removing the casts...they didn't think that all the way through, apparently, so we carried Verity to the specialty clinics to get her casts removed, then brought her back. It was fun to hold her without any casts, but she seemed a bit consternated (is that a word?!) at the feel of someone touching her legs and feet!

The surgery was very quick; in fact, it took longer to put her casts on than the actual procedure dealing with the tendons. She got a local anesthetic; actually, they put numbing cream on the area after the casts came off, and then she got the local after they whisked her away for the operation. She was away from us for less than an hour and came back in a sleepy little bundle.

Right before surgery. Isn't she a doll in that gown?!

After set of casts. They look huge!
We expected a horrific night after the anesthetic wore off, but it wasn't as bad as it could have been. And from what we can tell, Verity hasn't been in pain or discomfort the last couple of days. In four weeks we go back to get these final casts taken off. Then she will get the "boots and bar," which I have heard is pretty difficult...not much sleep, etc. So let's start praying in advance that she will not be phased by the transition!

Thursday, April 20, 2017

Hither and Yon

This week! Oh, my. I already posted about our GI appointment on Monday. It's late and my house is quiet, so I need to jump in bed while the opportunity is here. So I won't detail our adventures Tuesday, yesterday, and today, but here's a quick outline of what we've been up to:

Monday: GI Appointment
Tuesday: Echocardiogram and consultation with cardiologists; lunch for Mom and Dad; and then surgery for Verity's Achilles' tendons
Wednesday: No scheduled appointment; however, we made a trip to the ER when her feeding tube got a blockage. Sigh.
Thursday (today): Swallow study

Tomorrow Verity gets a break, although she has to come along to the military clinic for a couple of other family member's appointments.

Next Monday: Upper GI scope
Next Tuesday: Consultation with pediatric surgeon regarding placing a G-tube to replace the feeding tube...So we will presumably then mark another square on our calendar for the surgery.

Did I mention I have 8 other children?!?! Some days it seems I hardly see them. :-( BUT--I am extremely grateful that "out of the blue" three families from our church offered to bring meals this week, and I cannot begin to express how helpful that has been! I even got a much-needed nap this afternoon, the first in quite awhile.

And speaking of rest...bed is calling. We need to leave the house at 6am tomorrow for our appointments. I promise I will take some time this weekend to write about Verity's surgery and the swallow study results.

In the meantime, if you aren't already a member of our Facebook group Verity's Voice: A Trisomy 18 Song of Triumph, I invite you to look us up and see the new photo album I posted. Tuesday's events are also detailed there. I know not everyone is a Facebook user, but it's much faster to post updates there. But you'll get far more details here on the blog! I also hope to write more about what's going on in my mind (sometimes a pretty frightening place), not simply chronicle our to-do lists.

Monday, April 17, 2017

Going Rogue

About a week and a half ago, after asking for input from other Trisomy parents and having a doctor also weigh in with an opinion, we decided to "go rogue" and try an experiment for at least a week. I wanted to stop giving Verity the formula fortification that we've been adding to my breast milk. (Fortifying breast milk is typical protocol for smaller babes like our T18 girl so they can get extra calories to help them grow.) From arching her back to squirming and screaming and not pooping for several days in a row (and then it being a BIG ORDEAL when she finally did have a blowout), our poor Verity was clearly having tummy pains. I figured it would be worth investigating.

So starting Thursday evening, April 6, Verity began breast milk-only feeds. After 48 hours, we already were seeing a big difference. She was much more relaxed, and she hadn't really had any screaming fits--not like we had gotten used to dealing with. As time went on, another happy observation: she was no longer experiencing reflux! Before this change, massive reflux (milk spewing out her nose and mouth at the same time) was a daily occurrence, soaking everything and causing alarm because of the difficulty she would have breathing. It happened anywhere between 1-3 times a day. We utilized the suction machine almost daily, as the bulb syringe was not always capable of keeping up with the outflow.

Additionally, nights after dropping formula became--overall--more peaceful. While Verity wasn't exactly a great sleeper after the change, at least we weren't dealing with her painful screaming fits; the times she woke us up were more due to the discomfort she was likely experiencing because of her new castings or simply because she still has her days and nights mixed up. She loves to be held...which is all fine and good when it's 3pm instead of 3am!! Last night we had a happy surprise: Verity slept from about 8:45pm until after 5am! Was that ever a needed respite for her exhausted parents! We aren't sure if it's because we took her outside in the evening sunlight and tried our darnedest to keep her awake before starting her nighttime feed or whether it's because we diffused the Peace & Calming oil beside her swing during the night...but whatever the worked, and we shall try our best to duplicate it tonight, ha!

Anyway. Today was our follow-up with the GI doctor. Verity had been doing so well that I didn't intend to start adding formula to my milk again, but I did feel that I needed to be honest with him, especially since we were also consulting with a dietitian at today's appointment. Thankfully we had a track record of weight gain; I've been having Verity weighed between her castings, and she did gain weight despite not having the formula! Not a huge gain--from 6lbs, 13oz to 7lbs, 1/2oz. But still. She is trending upward, and equally important, she is a much happier, more peaceful baby! The doctor was pleased with how Verity looks; though he admitted that he had not looked at Trisomy 18 growth charts, he did say her growth is all proportionate. And he said he would look up those T18 growth charts!

The doctor and dietitian agreed that I can continue with breast milk only, but we are increasing her volume, which is something I was thinking Verity is ready for anyway, as she fairly consistently wakes before her scheduled feeding time. She and I also had a nice recreational nursing session late in the night a couple of nights ago, the first "success" I've had with that in a long while. We had a swallow study this coming Thursday and hope to begin transitioning to bottles (hopefully nursing at some point?), but it will likely be a fairly slow transition. Because of that, we are working on getting a referral for a G-tube surgery so that we can at least get rid of that HOSE, ahem, feeding tube in her little nose. :-)

So, new numbers: increasing from 400ml/day to 500ml/day, with 5 daytime feedings at 60ml and a 20ml/hr continuous feed 10 hours at night. We shall see how this goes!

Here is Verity, completely unconcerned in the GI waiting area!

Sunday, April 9, 2017

Tube Trauma, Part 2, and the Back Story of the Feeding Tube

A few days ago, right at the start of our oldest son's first debate of a 3-day tournament, I looked over at a peacefully sleeping Verity who was at the start of her 8am feeding session. Something was wrong, though, when I looked at her face: her feeding tube had come out! What in the world?! I had just set up the pump a few minutes before, and though I had not seen any flailing limbs, there lay the end of the tube, with the weight that is supposed to be in Verity's stomach resting on her chest while milk dripped nonchalantly onto her clothing.


Unlike the last time this happened (March 18, the day after we got discharged from the NICU), this was at the very beginning of a feeding instead of at the end, so time was of the essence. I called Ted at work and rushed away from the tournament site, headed to the children's hospital. We were quickly admitted to the emergency department, and I explained our whole feeding tube saga to the team there--the last time this had happened, we went to an ER at the medical center closest to our house. But as Ted wisely pointed out, we had an afternoon appointment at Children's Hospital anyway to get Verity's second set of casts...

Doesn't she look pleased with herself?!

Anyway. We hoped that perhaps we could get different tubes and get trained on how to put them in ourselves; living in paranoia that this 30-day tube might come out is fairly stressful. The staff was sympathetic to our plight and did all sorts of checking...but...we ended up watching as they put in yet another 30-day tube, this time in her left nostril, which was noticeably smaller than her right. Time to even them up! After we went to X-ray to verify that the tube was placed correctly, we were able to start her feeding again--by this point it was 10am, two hours after the feeding originally began, and Verity was NOT happy with being put on hold! (I did attempt nursing her during our waiting times...)

The staff had arranged with the orthopedic clinic to get us in sooner than our scheduled appointment, and while we did wait for a little while, we were grateful to see the doctor at 10:45am instead of 12:45pm. While we were waiting, I got a phone call from the case manager, who had been working on our behalf to dig up some information about feeding tube training for us.

So, here is the back story of The Feeding Tube Issue for all those who are wondering, "Why don't you just put it back in yourself?!" or, "Why didn't they teach you how to do that?!"

On March 10, for reasons I did not hear directly from any medical staff, the NICU team decided to place a 30-day feeding tube in Verity. I honestly am not sure why we weren't consulted as to using this type of tube vs. the smaller tubes that parents are typically taught how to insert and change out themselves, but from what I have heard since then, the intentions were good: the doctors thought that it would be helpful for us, since the nurses were even having some troubles inserting the usual tubing. Then, the tube was supposed to be secured with a bridle so that it would NOT come out. This sounded good; when the plan was presented to us, it did give me a measure of relief that I wouldn't have to be the one dealing with the tube insertion. I had no idea what a bridle was, but everyone seemed confident that this was a good plan for Verity and for us as her parents. It didn't occur to me to question it, and as I said, I truly believe everyone had our best interests in consideration.

Well, the bridle was a no-go. Despite being a "micro" size, it was still way too big for Verity's little nose. By this time the tube was placed, however, and so everyone agreed that we'd simply use that tube for 30 days (HAHAHA!!) and then see what happened from there. Later on I learned more about the bridle and am SO thankful that Verity does NOT have it "installed!" Good grief...look at this's a grown man! Even with this being the smallest size, can you imagine that clip at the end of Verity's tiny little nose?! And how in the world would we even attempt to nurse?!

So that's the story of how we got the 30-day tube in the first place. The first 30-day tube lasted 9 days before coming out, the second 17 days. I'm not convinced we will make it 30 days!! And this, of course, is why we asked the team in the Emergency Department if they could just help us switch.

And this is where things had to be untangled. As the case manager worked with me over the phone, calling me in between calling various parties, the complications became apparent...

* March 27: We had asked our pediatrician about switching feeding tubes; he agreed that it was a good idea and said that would be something to discuss with the GI doctor, to whom he had referred us for an appointment ASAP.

* April 3: The GI doctor agreed this was a good idea; however, he said this is something the home health care providers take care of; whoever trained us on the feeding pump and keeps us supplied with our feeding tube bags and other items, then, would be the ones we should contact.

* April 5: The case worker at Children's Hospital makes all kinds of phone calls. She learns that the home health supplies folks do not, in fact, do feeding tube training at all. Our pediatrician's office doesn't do anything of the sort either (primarily, of course, dealing with children who don't need feeding tubes). She also called our insurance to see if they will cover a home visit from a nurse to train us. They won't.

Bottom line: This training is supposed to be done IN THE HOSPITAL BEFORE DISCHARGE BY A BEDSIDE NURSE!!! Obviously we never got the training because...everyone assumed we didn't "need" it since the 30-day tube was placed before we went home.

Sigh. It's simply a huge mess of communication problems. Everyone means well; I believe everyone has truly been trying to help us. But now that we are out of the hospital, no one wants to step in and take responsibility for something they aren't sure they are supposed to be doing. We just need a bit of training! We just need to get the tubes ordered and be able to start using them!

In the meantime...the current 30-day tube is as secure as we can make it, and Verity is doing just fine. We have another appointment with our GI doctor on April 17, and the case manager put in a plea with his office explaining our situation. We haven't heard back from them (they did call once to verify some details), so I don't know if the doctor and/or his office staff will be able to get us this training or not.

So. That's the story...and now I must attend to Verity and hopefully settle her back down so we can both get some sleep tonight!