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)

Saturday, October 14, 2017

Nursing Care

We recently learned that we are eligible for skilled nursing care for Verity through the ECHO program, with Medicaid picking up additional hours. I still need to figure out what paperwork to do for the latter, but ECHO has been on the ball, calling me several times in the past week or two. The bottom line is that we can get nursing care 8 hours a day for 5 days a week, to be used however we want! This is both exciting and rather unnerving--now that things are in motion, it is all happening so fast. ECHO recommended a particular local nursing agency, and they contacted us last week and did a home visit to meet Verity and ask even more questions, lol. We met a nurse a few days later--shocking, since the case manager had indicated that it can sometimes take up to 6 weeks to find someone. Not surprisingly, the candidate prefers daytime hours...we are hoping to find nighttime care at least 1-2 nights a week so that we can have reliable sleeping hours, but daytime help will be a blessing for sure.

After I interviewed the home nurse, I felt comfortable telling the nursing agency that we are ready to try and see how things go with her. She is an older lady with 26 years of nursing experience including extensive experience with feeding tube patients. She has 5 years of exclusive pediatric experience and has lived in our state for almost a year. My friend Joyce was visiting us and sat in on the interview, and she gave favorable input as well. The nurse will come Monday, October 16, for her first day...Ted has Oct 16-18 off work, so he will be here to assess how things start.

I suppose it's normal to have mixed feelings about this. In some ways, we feel Verity is "low maintenance for being so high maintenance," as we sometimes tell folks. She's not on oxygen; she doesn't have a trach. She's hardly been sick, though she has been fighting a sniffle the last week. (As far as we can tell, she only had a fever for a couple of HOURS! Hooray for Thieves and other essential oils!!) At the same time, she is definitely high maintenance compared to our other 8 babies...and I feel extremely stretched JUST caring for Verity (usually on very little sleep), let alone being a wife, mom and homeschool teacher to our other kids, feeding the troops, keeping the schedule, etc. Despite the "what in the world is this going to look like" questions, I've found myself noting times in the last few days when I think..."When the nurse is here, I'll be able to [insert activity here]."

When the nurse is here, I can give undivided attention to the child who is ready for a new math lesson.
When the nurse is here, I can read a story to my littles.
When the nurse is here, I can sit with my teens and discuss their literature.
When the nurse is here, I can pump without perching precariously in a position that keeps me in reach of both Verity and...whatever. (My breakfast, the coloring toddler, the child working on handwriting, my paperwork...)
When the nurse is here, I can TAKE A NAP AFTER LUNCH!

When the nurse is here, she can do more therapy activities with Verity, things I would like to do but simply cannot--not every day, not very long, or not at all.

These are the things I'm telling myself. I'm not feeling any guilt, really (trust me, I usually excel in that department); but I think my main struggle concerns me not having control. But if I'm honest, how much control do I really have on a daily basis anyway?! Our schedule is in chaos, and so much of our daily activity depends on what is happening with Verity at the moment. And there are all too many moments when I am simply exhausted, overwhelmed, and unable to think clearly.

So. I have decided to assume the best with this new scenario. I know it will take some time to adjust to having another person in the house--I imagine it will be difficult for me to hear Verity fussing or crying and yet continue doing whatever I am already doing with the other children. But hopefully--prayerfully--we will strike a healthy balance, and my other children can have a more rested, less stressed-out mama during the weekdays! Please pray with us about this transition!


Verity's Vision

On October 3 we saw a pediatric ophthalmologist to assess Verity's vision. I was pleased to hear he had worked with other Trisomy 18 patients, and he was obviously well versed in our kids' needs. I was also pleased to hear that Verity's eyes are in good shape: her optic nerve looks fine; she is a bit farsighted (common for this age), but at this point she does not need little bitty glasses (somewhat common for T18 kiddos). Dr. B wants to see us again in 6 months and especially wants to monitor her right eye because of the slight droop. (It's so endearing to me, but I didn't think about how it could affect her eyeball!)

Thursday, September 28, 2017

What a Difference a Year Makes...

September 22, 2016: An unexpected call from my doctor. Learning what Trisomy 18 is.
September 26, 2016: A diagnostic ultrasound showing T18 markers. An amniocentesis.
September 27, 2016: The phone call from the university medical center.

One year ago we learned for sure that the baby girl I was carrying in my womb had Trisomy 18.

One year ago we were fairly certain our baby girl would not live very long.

One year ago life as I knew it changed, never to be "normal" again.

One year ago, when I was crumpling under the weight of uncertainty and grief, God raised up an army of encouragers to remind us daily that we were not alone.

One year ago we named our baby and talked with her older siblings about the meaning of her name.

One year ago I simply could not fathom what our lives would be like in a year.

One year later...one long, short year later...?

Today we know that Trisomy 18 itself is not a death sentence.

Today we know that Verity Irene is very much compatible with life.

Today we know how to use a feeding pump.

Today we know it is possible (although not preferable) to operate on extremely scant sleep.

Today we know dozens of families (if not more) in the Trisomy community.

Today we know how to follow our gut and not blindly accept "medical certainty."

Today we are grateful for the many, MANY people--Trisomy parents, doctors, nurses, therapists, specialists, and our own circle of family and friends--who helped us prepare for Verity's arrival and have cheered us on ever since, treating her as the beautiful child that she is, NOT as a diagnosis.

Today...today I am overwhelmed with gratefulness. I have no idea what the next 365 days will bring. But I am grateful for what we have learned, how we have grown, in the last 365.

Today...September 28, 2017...today Verity Irene is 7 months old.

What a difference a year makes.











Wednesday, September 27, 2017

Current Events with Verity!

In a recent update, I mentioned that we may have found some solutions for Verity's reflux. I had to leave it hanging, hoping to be able to detail our new feeding routine sooner rather than later. Facebook is faster than blogging, so I posted a video a few days ago about the open syringe gravity feeds we have been doing for Verity. I'm hoping that even if you aren't on Facebook, perhaps you can view the video? If not...just know that it has made a huge difference overall--no vomiting at all!--and while we aren't totally rid of the tummy issues, the lack of spewing out of her mouth and nose has made her AND us much happier. Our T18 babies unfortunately just have lots of digestive issues due to their smaller physiques or other anatomical issues. (She is fussing and grunting in the background even as I type...her daddy is with her, though, so I'm sneaking some time here.)

I've been on overload the past couple of weeks. Now that Verity is in The System and referrals are coming through, I have spent an extraordinary amount of time on the phone and/or dealing with paperwork. The good news is that my calendar is filling up with appointments. The bad news...is that my calendar is filling up with appointments. :-/ Here's a rundown of what we've been doing the last couple of weeks JUST related to Verity's specialty care:

18 Sept - Chiropractor appt
19 Sept - Physical Therapy (at our house)
20 Sept - Occupational Therapy (at our house)
21 Sept - 40-minute phone consultation with dietitian
21 Sept - Physical Therapist & Vision Specialist visited/assessed Verity

26 Sept - Physical Therapy (at our house)
28 Sept - morning - Meeting with Dietitian (at our house)
28 Sept - afternoon - Occupational Therapy (at our house)
29 Sept - morning - GI appt
29 Sept - afternoon - Chiro appt

Note this does NOT include all the time on email and the phone setting up future appointments, dealing with getting new medical equipment from a local medical supply company (feeding pump & supplies, suction machine...), fending off calls from bill collection agencies, contacting TriCare, contacting TriCare again, finally getting TriCare to pay for all the stuff they said they'd pay for...

The Resource Exchange (TRE), which is (I believe) the equivalent of Iowa's Early Access services that we were getting before moving, has been fabulous in working with us regarding our immediate goals of helping Verity with her feeding and sleeping issues. I am very fond of the ladies we see on a weekly basis at this point, and I am immensely grateful that they come to our house instead of me having to pack up and go somewhere. They are very flexible, also, and when it works out, Christine (PT) and Susan (OT) try to come at the same time...it just hasn't always worked out.

Upcoming appointments, aside from TRE meetings:

3 Oct - Ophthalmology
16 Oct - ENT (for requesting a sleep study)
17 Oct - Orthopedics
26 Oct - Cardiology

And don't even get me started on all the different dates I will be dragging children to our new dentist's office for overdue cleanings. Sigh. I hate moving.

But...finally we are moving forward with our continued commitment to providing Verity with the best care we possibly can.


Saturday, September 23, 2017

Resource Book PUBLISHED!

If you were following our journey shortly after Verity was born, you may recall the story behind the story Our Baby Will Be Different, a book I wrote to help prepare Verity's older siblings for what some of their baby sister's challenges might be. I am pleased to announce that the book is available for purchase in both a girl version AND now also a boy version! I am extremely grateful to our friend and illustrator Adam Turner for his gift of time and talent not only in illustrating both versions of the book, but also in helping me prepare the book for publishing in an on-demand format so that it can be available at any time for anyone who wants it.

This upgraded version includes a list of some Trisomy resources in the back along with space for journaling "Our Story." It would be a lovely and meaningful gift for any couple who learns their baby has Trisomy 18 or Trisomy 13.


Happy Half-Birthday, Verity!

August 28, 2017

Our little Verity celebrated her HALF BIRTHDAY! What an amazing milestone. She continues to write her very own special story, as we showed on her cake: a half cake for her half birthday, made (of course!) with love by big sister Charis. Verity even got to taste some frosting, her first taste of something other than breast milk!



We love you, sweet Verity. We look forward to seeing the next chapter in your story!

Sunday, September 17, 2017

Doctor Input...Finally!

After two months, Verity finally had an appointment! I never thought I'd be so happy to take her to a doctor, lol. After her first several months of life, with multiple appointments each week, I thought I'd enjoy a bit of a break so we could focus on our move, unpacking, getting settled, etc. And it would have been fine if Verity's condition hadn't changed once we moved to Colorado!

Anyway, we saw our new military pediatrician, Dr. Hatch, and I like him just fine. He's not Dr. Toth, who did happy dances every time he saw us because of how amazing Verity was doing, BUT I will give him the benefit of the doubt since he needs to get to know us, ha! I did feel bad for him because, despite our best efforts (including an in-person visit by my in-uniform husband ahead of time), somehow he was not given any of Verity's information beforehand...so I spent a half hour waiting with a nearly naked Verity in the exam room while he went through paperwork to acquaint himself with Verity's file. Verity passed the time by soiling two diapers and made a FABULOUS first impression by having a full-on blowout on the table just after Dr. Hatch came in the room. Ha!

So, the rundown: Verity is 11.6 pounds, 22.5 inches. She has only gained one pound in the last 2 months, but she is proportional and following her own growth curve, and Dr. Hatch was not concerned about that. I was relieved, because when I realized her weight gain was only one pound, I immediately began worrying that her reflux was harming her growth. :-( But he is pleased with how she looks overall and stressed that she has her own growth curve and based on that, she is doing great.

Everything we talked about went onto a notepad, and he granted everything we asked for as far as tests and referrals PLUS some we hadn't specifically addressed. His nurse called me early the next morning to confirm the vast list of referrals, which include GI, orthopedics, cardiology, ENT (for a sleep study), ophthalmology, PT, OT, neurology, genetics...and I don't even know if I've listed everything! (My list is hastily written elsewhere...)

Meanwhile...we still had a really rough week with Verity's feeding and tummy issues, but we may have stumbled upon some solutions. I will have to leave you hanging, though, because it's time for AWANA! Plus, I want to give our new protocol time to see what happens. But the good news?

Verity slept for 8 hours last night!!!


Saturday, September 2, 2017

Bustin' Out

It looks like we will be heading HOME before too long! Verity and I are looking forward to sleeping in our own beds tonight! I intend to make this a QUICK update:

* Her sats have been 96-100 the whole time (except for when she's kicking her legs, lol).

* Last night was not terrible but not great. Kinda normal for Verity...waking every 15-30 minutes for a couple of hours, and then once an hour for a few hours, and then 3 hours of straight sleep...starting about when the sun was coming up and Mom was waking. Sigh.

* Verity had an amazingly happy, content wake time for about 4 hours in the morning! She was interacting with me and the nurses, even giving the other ladies smiles!

* She has done great with all of her feedings. Every now and then she gets squirmy and fussy about halfway through, but she hasn't vomited a single bit!

* Three poops in the last 24 hours! Substantial ones, lol. She typically is an every-day pooper, but the last week she was going a couple of days between poos.

* Verity is still a bit congested but not bad. I haven't had to suction her nearly as much as yesterday, and when I do, it's a lot less "gunk." (Tip: Holding the lid of my peppermint oil under her nose makes her get really still and inhale deeply!)

* I finally saw the doctor just after noon. She said that today we switch from IV antibiotics to oral, and if Verity tolerates her next feed (which begins in about 15 minutes!), we can get discharged!

Verity is snoozing at the moment; she napped about an hour or so, woke up and fussed, then pooped, and then promptly fell asleep after her diaper change.

All in all, things are going well. I'm going to pack up my stuff in anticipation of being discharged as soon as possible once 3:00 comes! (Her feeds are 70ml over an hour.) I'm grateful we caught the UTI early...it certainly wasn't on our radar, but God is good and directed us to where we needed to be. And getting the reflux under control will make a HUGE difference in our everyday life at home. So, while a PICU stay wasn't in our plans for this weekend, we'll take the end results with gratitude!!

Friday, September 1, 2017

Hello from the PICU

Here's the long story of what's been happening with little Miss Verity of late, the upshot of which has us spending a couple of nights in the PICU...

In the last medical update I gave, I noted the increased problem of reflux with Verity's feedings as well as our difficulty getting any medical appointments on the calendar. So in this update I will give a rundown of both the Insurance Saga and the Current Medical Status. If your eyes glaze over at the thought of reading about insurance woes, feel free to skip to Part 2!

Part 1: The Insurance Saga

After Verity was born, a clerical error resulted in a Verity Irene Jacobson as well as a Vertiy Irene Jacobson in DEERS. This is a database of military members entitled to Tricare benefits. Not only was there a misspelling of her name, but also two digits of a social security number were transposed. Obviously this was going to cause problems with insurance paperwork.

Finally, after much hoopla and hoop-jumping, the errors were corrected. (Life lesson: Kids, make sure you DO YOUR JOB RIGHT THE FIRST TIME!!) 

The good news: Verity was enrolled!
The bad news: Verity was enrolled...in Tricare Standard, not Tricare Prime.

By the time everything was corrected, more than 60 days had elapsed since her birth, and in the middle of our fog of not sleeping and attending what seemed like hundreds of doctors' appointments, we didn't finish the process that we needed to in order to get Verity onto Prime.

Meanwhile, our pediatrician, our case manager, the EFMP (Exceptional Family Member Program), we parents, EVERYONE assumed Verity was on Tricare Prime. We had no problems getting referrals for her specialty care, which is a blessing. The problems came when, months later, we began receiving bills for these specialty appointments...because the system thought Verity was on Standard, which meant a lot of co-pays.

At some point after we had moved and were beginning to feel somewhat settled, we learned that Verity was not, in fact, on Prime. Ted did the necessary paperwork, but her official Prime enrollment would not begin until September 1. We were able to schedule her first regular pediatric appointment at the military clinic for September 11. The application for retroactive enrollment was approved, so, once everything gets settled...the bills should be taken care of. However, we are making phone calls and trying to avoid having them go to collections in the meantime. Sigh.

Part 2: Current Medical Status

The last few weeks Verity's reflux problem has only been growing worse. When I realized we were not going to be getting any specialty referrals anytime soon due to the insurance situation, I began asking other Trisomy parents for input and doing some reading about how other tube-fed babies' feeding schedules look. I learned there is a wide range, and many comments in response to my question gave me ideas for how we might approach tweaking Verity's feeding schedule to help reduce these horrible reflux episodes. For those who haven't dealt with reflux...imagine most of the feeding coming back out through the nose and mouth. :-( It's awful. And there is always the concern of that going into the lungs.

We started tweaking things on Monday and were finding success: slowing her feedings down so that they take a full hour; and stretching out the feedings to every 4 hours instead of every 3 hours (which allowed us to increase the volume a bit). Overall things went well! We noticed she was more alert and content during her wake periods instead of constantly screaming or fussing (although she still had those periods too, just not as often). Nights were decent...she would go right back to sleep when given her pacifier. The only problem was that 8am feeding--every morning she would get almost to the end and then everything would come back up. So we were talking about changing that overnight feed so that there would be more time between the end of that and the beginning of the first full feeding of the day.

And then late Wednesday night came, and Verity was a mess. She had caught something or other and was congested and miserable. She slept pretty well when I put her beside the diffuser with Thieves and peppermint essential oils, but she was definitely not breathing all that well, and the reflux seemed to be coming on again.

So Ted brought her to the ER (after we called the Tricare appointment line to see if any acute appointments were open--this was the last day of August, the last day of her being on Tricare Standard, and so only acute appointments could be granted to her. There weren't any, so it was a moot point). It was Thursday afternoon. He took enough breast milk for two feedings, thinking he would be home in the evening.

To make this shorter:
* Her lungs were clear and there was no fever.
* They ordered an ultrasound. There was too much gas in her belly to see anything; they ordered another one after her feeding had had time to settle.
* The second ultrasound was also unsuccessful.
* They ordered X-rays. First round of X-rays was inconclusive.
* They ordered more X-rays. They thought there might be an obstruction.
* A surgeon was called. Eventually he declared there was no obstruction; however, he was concerned about what he termed "rectum malformation." (This is not the text you want to receive from your husband when you're anxiously waiting for an update.)

By this point it was past bedtime, and Ted and Verity clearly were not going home. He dozed with her on the ER bed until they finally got to go to a room in the PICU, where they slept fairly well considering the circumstances. They discontinued breast milk feedings for Verity and gave her Pedialyte/IV fluids through the night.

This morning:
* Verity's white blood count was high, and cultures revealed what seems to be a UTI. 
* Thus, another day/night in the hospital.
* Three criteria for going home: getting the UTI under control; consistently good sats; tolerating feeds.
* The "rectum malformation" that I had spent much time stewing about?? Um, she has a small rectum. As in...our small baby has a small butt. She may have constipation issues when she moves past breast milk. Seriously?! I worried for THIS?? Does this doctor know ANYTHING about Trisomy 18 babies?? Shaking my head here...

This afternoon:
* Verity got a dose of antibiotics for the UTI.
* I left my kids at home with their Grandma J and Great-Uncle Rande and Great-Aunt Jo so I could come to the hospital.
* We got to meet the GI doctor on duty, who "happens" to be the very one that our GI doc from Omaha recommended to us! He was wonderful and confirmed much of what we were thinking. We look forward to working with him as we go forward. 
* Verity started regular feeds again at 2pm, with 70ml of breast milk every 3 hours. She seemed uncomfortable halfway through the 2:00 feeding but slept completely through the 5:00 feed.
* Ultrasound of her kidneys and bladder (she slept through the whole thing).


This evening:
* Visit from Rhonda, Rande, and Jo.
* First dose of Zantac (I think?), a reflux med
* Instead of a 10-hour continuous feed through the night, we will do 8 hours.


That's all I know! Hopefully we can rest tonight and go home tomorrow??!

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 feeding...so, 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

Milestones

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 requires...my 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 note...it 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.)

Today...today 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!