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)

Tuesday, November 20, 2018

Fifteen Minutes

My baby stopped breathing on her own for 15 minutes today.

Did your stomach drop when you read that? It's been 13 hours since I learned that this is how Verity reacted when she was given fentanyl during a simple, outpatient tenotomy surgery. And my stomach is still churning.

Let's back up a bit and start with the easy part: the tenotomy portion went well. Verity is sporting purple casts attached to a wooden bar. The casts are to keep her Achilles tendons flexed, and the bar is to keep the hip abductors positioned just so. Both sets of tendons underwent this lengthening procedure. Verity will wear the casts/bar for 4 weeks. (Note to self: Call to schedule the cast-removal appointment. My brain could not handle making that phone call today.)


I knew Verity would be completely under anesthesia for this surgery. She has been under twice before (once for her g-tube placement and once for a sedated hearing test), and both times she had zero issues.

What I did NOT know was that fentanyl was part of today's protocol. I had asked upon arrival what the pain management plan was, and a couple different nurses assured me the doctor would go over that with me. It was about 45 minutes between when I asked and when it was surgery time. They allowed me to carry Verity to the operating room and be with her while she went under, and then someone whisked me away. Honestly, I totally forgot to pursue the medication question...(trust me, I've carried the weight of guilt because of my memory lapse)...I had realized that Verity's feeding pump and supplies had fallen out of her diaper bag, and I was anxious to grab them and return before they called me back.

It probably took me about 15 minutes to retrieve those supplies from my vehicle...15 minutes during which I had NO IDEA an anesthesiologist was doing the work of breathing for my daughter.

I had hardly sat down in the surgical waiting area when it was all over: an attendant walked me to the post-op room, where I found a very sound asleep Verity and got the run-down from the post-op nurse.

I did not hear about the fentanyl.

We waited and watched Verity. Her sats and heart rate were good, respirations were low (10-11), but that was to be expected, they said.

Verity slept. And slept. And slept.

The anesthesiologist came by to check on her. He said nothing about the incident. Nothing at all about the fact that my baby had stopped breathing while under his care.

Verity continued to sleep.

The surgeon came by to check on her. He said nothing about the incident. He did say he only recommended ibuprofen for the pain.

Verity continued to sleep. And as the two-hour mark approached and she was still sleeping, we tried some creative measures to wake her up. We got close...and then she would go right back to sleep. I wondered if I should be getting worried, but her color was good and by this time she no longer even needed the blow-by oxygen.

The post-op nurse has 40 years of nursing experience, and she was pretty calm. But I think by this point she was getting a little concerned herself. The nurse talked out loud as if reassuring us both that it wasn't too surprising that it was taking longer for Verity to wake up...after all, she's definitely a "lightweight." After all, it was only a little bit of fentanyl that made her stop breathing for 15 minutes.

WHAT?!

I have learned I am not very quick on my feet when things like this happen. It really took me all afternoon to process all of this: I wasn't told my daughter--my almost-21-month-old, 17-pound daughter with special needs--would be given fentanyl, a drug that has killed children in the Trisomy community. Furthermore, the doctors who had my daughter in their care...literally held her life in their hands...did not tell me that she stopped breathing for 15 minutes. The only reason I learned this happened was because the post-op nurse made a passing comment. I had spent nearly 2 hours with her and even SHE did not mention this staggeringly important detail!

Am I crazy to think this is a rather vital detail to be left out of the post-op narrative?!

I have contacted our PCM and received a reply from his nurse right away--she wants me to call the patient advocate at the hospital to get it documented and request a call back from the provider. I do wish I had been able to say something while I was there in person...I think I was so stunned, and then I also needed reassurance that it was in fact all right for me to take Verity home after all this had happened. She did wake up more or less "for good" about 3 hours after surgery, and we have monitored her all day and she has done better than expected, actually. I anticipated a rough few days and nights...she napped well this afternoon, and though the evening was a bit difficult, she is resting well now with her pulse oximeter on and nasal cannula in place.

But let the records show...fentanyl will NOT be given to Verity AGAIN!!!

Thank you, Heavenly Father, for protecting our precious girl today. May she (and we) ever glorify you no matter what...

Sunday, October 21, 2018

Current Status (Quo)

I can't believe it's been 2 months since I wrote a blog post! Do you know what that means?! We've been experiencing some kind of NORMAL! That is to say...we've been living the busy life with our kids, and Verity has been growing and developing and thriving in the midst of it all.

So with a bit of time and a quiet house, I decided an update was way past due, especially since we do have some things to report that we haven't detailed on Verity's Voice (our Facebook page).

************

First of all, I am pleased to report that Verity's feeding regimen continues to improve as we work toward a more "normal" feeding routine. We are up to 3 bolus feedings now, with only 14 hours of slow continuous feeding, running 4pm to 7am. This means Verity has quite a bit more TUBE-FREE time during which she can practice her moving and grooving! It is SO nice to be able to hold her, carry her, and help her with her physical skills when she doesn't have her "leash" on! While she still isn't eating by mouth, we are doing more and more tasting and doing so while she is having her bolus feeds so that she can begin associating food with a full (or filling) tummy.

So her feeding schedule looks like this:

  • 0700: Turn off the feeding pump (ending the continuous feeding)
  • 0800: Begin bolus #1: 75ml over a 30-minute period (rate of 150ml/hr)
  • 1100: Begin bolus #2: 75ml over a 30-minute period (rate of 150ml/hr)
  • 1400: Begin bolus #3: 75ml currently at a rate of 85ml/hr, with rate increases of 5ml/hr every 3 days.
  • 1600: Begin continuous feeding: 34ml/hr for the next 14 hours.
Typically during the first 2 bolus feeds, Verity will sit upright at the table in her chair. She has had tastes of applesauce and sweet potatoes by spoon (or on her pacifier), and we also frequently give her a food "stick" to hold and explore with her mouth. She has tried carrot and celery sticks, cucumbers, and apple slices so far. One of her day nurses wants to try a big pretzel rod! Verity's interest level varies from day to day, but I'm in no hurry. She's GROWING!

And speaking of which, I don't have exact measurements--we should get some this week since we have a couple of appointments--but last time we weighed her she was about 16lbs, 12oz, although that was with clothes on. STILL...she had dropped under 16 pounds awhile back when she was fighting off a sickness, so this is encouraging!!


************

Last week we had a 6-month check-up with the orthopedic doctor. The good news: Verity's hip X-ray shows all is continuing to look good. The doctor says she should have yearly X-rays as long as she is growing.

The bad news: Verity's Achilles tendons have tightened considerably, and the tendons in her groin are likewise still very, very tight despite the stretching exercises we do faithfully and frequently. So, a November 19 surgery date is scheduled for a tenotomy to release those tendons. After the brief procedure (which will require sedation), Verity will get full-leg casts with a brace between her legs. She will need to wear those for 3-4 weeks, and then we will resume the boots and bar (which we have discontinued at this time).

So...if you think of us during Thanksgiving week, please pray that Verity's surgery goes uneventfully and that she has minimal pain and recovers quickly. We are already dreading the lack of sleep that will undoubtedly accompany this process!

Below you can see her left foot, which is "rocker bottomed," a common feature in Trisomy 18 kiddos. Until our appointment last week, I had not heard a doctor describe her foot in this way. I assumed it looked different from the other foot simply because they were both severely clubbed and had to go through the casting process (a year and a half ago!). You can also see the back of the heel, which will not flex any more than this even if we are trying to help her do so. The right heel is much more affected than the left...we have not been able to get that foot flat onto her boots for some time now, so I was not terribly surprised when I heard the doctor's recommendations.



************

In other very quick news:

  • Verity's sleep patterns have improved DRASTICALLY! She usually will take a 2 or even 3-hour nap (although sometimes only 45 minutes or an hour) in the afternoon. If she gets a good nap, she typically does have a pretty decent night of sleep. She is even sleeping all the way through the night on occasion!
  • I have successfully completed CNA training and passed the Colorado state exam! This involved 4 weeks of night classes and clinical experience, followed by a full day of written and skills testing. I am officially a certified nurse aid! What does this mean? Well...
  • In the state of Colorado, family members are allowed to receive payment to care for their disabled loved one. There is an assessment tool that tells how many hours per day one can qualify for, and when a caregiver is certified (or licensed or registered, depending on what level of care), he or she can be hired through a home health agency. I work through the same agency that provides our skilled nursing care, and I'm quite pleased with the training and preparation I received through this whole process. I chart for 4 hours a day, and it amazes me that we are blessed to receive financial help for the tasks I was already doing with Verity. What a GIFT! The Lord knew we needed to be in this state for multiple reasons, and this is just one way He has tenderly shown His provision for us. Jehovah-Jireh, indeed. 
  • I will detail later the results of the sleep study we had at the end of September, as I still need to meet with the ENT and later on the sleep clinic doctor.
  • Tomorrow we have a liver scan and kidney ultrasound--we do this every 3 months, although this will be Verity's first liver scan. Our T18 kiddos have a higher chance of cancer/tumors, so it's proactive vigilance. 

Monday, August 20, 2018

Where's the Hope?

On Thursday I checked our mail for the first time in a few days and found a sweet package for Verity. I love the message from my friends at Hope for Trisomy*. These tangible gifts of love and support brightened my day. (Thank you, Erin!!!)


On Friday I learned that Karson, a sweet, beautiful, recently-turned-five-year-old girl with Trisomy 18, went to be with Jesus. I had gone to bed praying for her after seeing her mama's frantic post about a last-ditch effort to save Karson with ECMO. It didn't work.

Where's the hope in that?

This jolt to the Trisomy community reminded me of another recent bitter loss. On the 4th of July I saw photos of smiling Maddy radiating sunshine in her red-white-and-blue, and the next day she was gone. Just...gone.

Where's the hope in that?

My sweet friend Kirsten was forced to say goodbye to Heath, a special needs boy who left her womb early to join brother Gavin (who had Trisomy 18) in heaven.

Losing two special boys back to back. Where's the hope in that?

Fernando went to heaven on Good Friday, just before getting to celebrate his 4th birthday. He left behind loving parents and a proud big brother who wanted to tell his new class last week all about how special his brother in heaven is.

A grieving family left with only memories. Where's the hope in that?

As I sit reflecting on what is happening in our little Trisomy world, I ponder and pray for families who are facing chemo...getting tests done and waiting for answers...preparing for open heart surgery...caring for their little ones through sicknesses at home and in the hospital. (We ourselves are on the tail end of a fight with aspiration pneumonia that landed Verity in the hospital for a brief stay.)

In the midst of it all...in the midst of tests and sicknesses and therapies and surgeries...we hope.

Hope for Trisomy? Yes. Yes, there is.

Our own Trisomy journey has taught us that hope looks different at various points along the way. During pregnancy, I hoped I would meet Verity alive. Now, 18 months later, we have hope that someday Verity will sit up by herself, move herself around (whatever that looks like), and communicate with us (whatever that looks or sounds like).

We have hope that we will have many more experiences with our girl this side of heaven.

And yes...even though we don't really like to think about it...our hearts still hold onto the truth that ultimately, we DO have the hope of heaven awaiting us, an eternity in which Verity and her Trisomy brothers and sisters will laugh, sing, dance, and play without hindrance.

I can't pretend to know how it feels to lose my child. I only know how hard it hits me, every time it happens, even though in most cases I've never met the family in person. But the death of a Trisomy child affects everyone in the community. It's all too easy to put ourselves in the place of the grieving parent, because it's something we've all imagined happening, whether we admit it to others or not. But does the threat of death remove all hope in life?

What about this? Does the reality of a difficult life remove hope FOR life?

It's worth pondering. I remember the point during my pregnancy when I realized it was time to stop preparing for Verity to die and start preparing for her to LIVE. And I had to face the fact that her LIVING would look much different than any of our other children's lives.

Where's the hope in that?

Where's the hope?

I'll tell you. I see hope every day. I see it in the smile of a little girl who didn't smile for months. I see it in the giggles and grins she now gives her brothers and sisters. I see it all over her face when her daddy comes home and sings her special song. I see it in the twinkle in her eyes when she pushes against me wanting to be rocked. I see it in the kicking of her legs, the workings of her fingers, hands that used to be clenched so tightly. I see hope in motion as Verity rolls herself and works hard during therapy, doing things we never dreamed she could do a year ago.

I see hope in the form of a wheelchair that will grow with her. I see hope in the form of a committed family chipping in to make sure Verity has what she needs when she needs it. I see hope in the love and care her nurses have for her as they cheer her on each day and night they spend with her. I see hope in a medical community at large that is finally starting to understand the potential our kids have to grow and thrive with proper interventions.

I see hope everywhere Verity's life shines.

And it's a beautiful thing.


"...and we rejoice in hope of the glory of God. Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God's love has been poured into our hearts through the Holy Spirit who has been given to us." --Romans 5:2b-5


*Hope for Trisomy's Addy Grace gift is inspired by the life of Addalyn Grace, who lived for 26 months with Trisomy 18. Sweet Addy was one of the "older" children I connected with through my newfound online community. Her mom, Erin, did a special post every day in March (Trisomy Awareness Month), which I looked forward to every day since at the time I was in the NICU with our newborn Verity. Erin's love for her only daughter was so evident...even more, her love for Jesus shone in every post. My heart broke when Addy unexpectedly went to heaven. Through the heartbreak, Erin and Jay continue to express the hope found only in Jesus Christ. They continue to be active in the Trisomy community and have touched far more lives than they will ever know.


Sunday, July 29, 2018

S.O.F.T. Conference

For photos of our adventure, see our Facebook album here!

On July 18 we drove to Omaha, Nebraska, for our first trip since moving to Colorado just over a year ago. We had been looking forward to the annual conference put on by S.O.F.T. (Support Organization for Trisomy 18, 13, and Related Disorders). Well, to clarify, Ted and I were looking forward to the conference, while the rest of the family excitedly made plans to meet up with their friends in the local area since we lived there from 2015 - 2017!

Anyway...the drive was fairly uneventful, though Verity did have a small bout of emesis during the drive. We decided to forego the bolus feeding during our driving days, and we simply maintained her feeding regimen while we were in Omaha. Overall she did pretty well, though it was obvious she knew she was not in her normal environment, and that did cause her some distress. (But it also gave us opportunity for some great cuddling sessions, since at least Mommy and Daddy were familiar and brought her comfort!) So there wasn't a whole lot of quality sleep, but we figured that would be the case going into this experience!

Here's a rundown of our trip:

WEDNESDAY
Driving day! Left our home at 7:45am (mountain time). Arrived at the conference hotel at 5:45pm, just in time to check in and get our conference bags. Then we checked in at our overnight hotel and went to Sinful Burger, a favorite restaurant of our family's. We met several friends there and enjoyed visiting. We said goodbye to the older 4 kids, who went to various houses to spend the night with friends, and had a rather restless night in the hotel room with the other 5 children.

THURSDAY
We dropped 4 kids off in the child care room and went to our first session, which touched on various legalities surrounding guardianships and trusts for special needs individuals. We didn't take notes but it was good information, and we did learn that there are so many differences from state to state that really the speaker was somewhat constrained in what she could tell us, as she works in Nebraska, but she was very knowledgeable and gave a fairly understandable overview of what kinds of things might be possible from state to state.

Our 3 little boys left after this session, as a friend of mine came to pick them up and take them to the zoo with her kids, followed by an overnight and more activities, so we were down to only 2 children for awhile, lol.

The next session covered ways to prevent seizures, light sensitivity, and headaches for our children. We were sitting in the back, and when the A/C kicked on, it was a bit hard to hear, but the information was excellent. I confess I was a bit distracted by all the wonderful people in that room! The previous session wasn't nearly so full, and I really loved looking around and seeing faces that I had previously only seen on Facebook! Ted and I especially enjoyed watching Faith puttering around in her walker--I've seen her videos on Facebook and have always been amazed at her! (Later in the week I got to meet her parents, and we talked at length about how they helped Faith learn to walk.)

Our third session was Integrative Medicine: Thinking Outside the Box, which was excellent. The doctor is herself a mom of a 10-year-old girl with Trisomy 13, and she spoke about so many natural options from essential oils to acupuncture to massage and more. Such good, practical information.

Then it was time for lunch. We visited with several families, and we decided to send Ted to get some coffee for us from The Omaha Bakery, a favorite of ours since Michelle baked Verity's dedication cake. We talked our way through the next session, as we had connected with a couple more families and decided to just hang out since we would have been late anyway.

Then it was time for the Moms-only and Dads-only sessions. It was a time to get to know each other, share encouragement, concerns, whatever. It was such a joy to see so many kiddos with their moms in our session! We had a huge photo op with I don't know how many kids on blankets on the floor. So precious! Verity was definitely the baby of the bunch. (By the way, 38-year-old Megan with full Trisomy 18 was the oldest T18 person we met at the conference!)

We reunited with Rhema after this final session--she did so well considering it was a strange place and a very long day! We went back to the hotel and changed to our dinner clothes (choosing pink items in honor of Stacy, a T18 young lady who loved the color pink and who passed away in the spring). Then back to the banquet room to enjoy the Welcome Dinner. I wheeled Verity in her stroller for the "Parade of Stars," which featured all the Trisomy attendees. We watched a precious dance performance from members of a local adaptive dance studio called Dancing Beyond Limits. The keynote speaker was Lizzie, a 32 or 33-year-old with mosaic Trisomy 18. She read a speech that was several minutes long--it was wonderful to see someone with a related chromosomal issue who can walk and talk and interact so well! (You can hear a portion of her speech here.) Lizzie knows and loves everyone--we were new, so she had to come meet Verity. :-) (Because I know I will be asked...a mosaic Trisomy only affects a certain percentage of cells. Whereas Verity has FULL Trisomy 18, meaning every single cell in her body carries the extra 18th chromosome, a person with mosaic T18 may have only 20% of cells affected, or 85%, or any percentage--make sense?)

We were pretty wiped out by the time the dinner portion was finished, plus we had two little girls with us who had not napped much to speak of, so we went ahead and skipped out on the dancing portion! That night in the hotel room was much better than the previous night, thank you Jesus!!

FRIDAY
Our first event this day was the Stroll for Hope, a S.O.F.T. fundraiser that has been going on yearly for awhile in memory of Jonathan. It was fun to see families dressed up and strollers decorated. With this being our first year, we didn't know what to expect, but wow, some people went all out! It was a leisurely walk around the hotel commons area, which was great because Omaha in the summer does not make anyone want to get out and exercise, lol.

We went from there to The Omaha Bakery again, because Michelle told Ted he had to bring Verity and me back! We also met up with one of our favorite NICU nurses, Donna, who was our discharge nurse when Verity got to go home from the hospital. It was so lovely to see these sweet women and let them hold Verity and admire how much she's grown!

Then it was time for clinics at the Children's Hospital. This was similar to the children's developmental clinic that Verity went to in May 2017. Each Trisomy family had an exam room, and the specialists rotated in and out, giving us about 20 minutes each. First up for us was the audiology team, who remembered Verity and were so delighted to see her again and hear about her progress! Then genetics, and again we saw a familiar face from our time in the NICU. I don't remember any specific thing we gleaned from these sessions...it was mostly us telling the teams an overview of Verity's history.

The physical therapist that came in gave us some great tips on helping Verity build upper body and arm strength. You can see the video here. His was a very practical session that I think especially resonated with Ted--both are dads and this PT had a different approach than the female PTs we've worked with!

It was really good to visit with the neurologist, a specialist we have actually NOT seen before. She went over the various types of seizures and the many different ways they present so that we have a much better idea what we should look for. Verity hasn't given any signs that she has ever had a seizure before, but we know they are fairly common with our Trisomy kids, so it's something to be on alert for.

Finally, we spoke with a GI doctor (not the one we saw when we lived there), and he was helpful in giving us a few different options for Verity's poo issues...though we are hoping they continue to improve as we add/increase the bolus feedings to her feeding regimen.

That was our conference day...our family day ended after we picked up our little boys, grabbed some pizza from our favorite pizza place in Glenwood, and went back to the hotel for some dinner and pool time before bed.

SATURDAY
We moved out of the hotel Saturday morning and then attended the conference picnic, where we met up with our older 4 kids (whom I had asked to come to the picnic so that they could have the opportunity to meet some of the other families who came). The picnic was wonderful! Face painting, balloons, games, espressos, smoothies, catered food, but best of all was the opportunity to leisurely visit with people. I probably could have stayed much longer, but our kids were getting antsy to get back to their friends, plus we were approaching nap time with little people, so we headed out to Glenwood, where we stayed for a few more days catching up with dear friends.

Our drive home would have been uneventful if it weren't for our 3-year-old, who is extremely prone to motion sickness, vomiting every couple of hours. Sigh. But all in all, we are so grateful we had the opportunity to attend the conference, meet so many wonderful people, and learn more about how to care for our sweet Verity! The next few conferences are a much farther distance away from us, so I am not sure that we will be able to attend them. What a blessing that this year the location was relatively close and allowed us to meet up with friends and family in the area!

Wednesday, July 4, 2018

Let Freedom Ring!

This is an Independence Day post, but I will start with a flashback to Christmas vacation when I was tucking my 3 little boys in bed. Lucan, my 8yo, was talking about something (I don't recall what exactly) that would happen in the future, and he was rattling off the ages he and his siblings would be at the time. His words were matter of fact: "I'll be 12, Zaden will be 10, Seanin will be 8, Rhema will be 6, and Verity will be 4, if she's still alive."

If she's still alive?!?!

My breath caught in my throat, and a knot formed in my stomach.

I don't remember how that conversation ended, whether I said anything in particular or not. I only remember standing outside of the bedroom after the door was closed and sobbing my eyes out.

Two months later, on February 28, 2018, Verity turned one year old. It was a huge milestone. Statistics we had heard since Verity was in utero indicated if she reached that one-year birthday, she would be one of the 5-10% who did.

The very next morning, March 1, Lucan ran upstairs to find his baby sister. When he saw her, his eyes grew round, and he shouted with excitement, "She's still alive!!!"

The weight of his surprise settled on my shoulders with a heavy realization: my sweet, tenderhearted son thought Verity would succumb to statistics now that her birthday was over.

And it hit me that twice now, my son had voiced the uncertainty of the burden under which we all were living, even if we didn't talk about it or acknowledge it...even if we didn't realize it was there to begin with.

Verity's birthday party came and went. Appointments, therapies, sleepless nights, little developments and progress, an overnight stay in the hospital, a bit of regression, more appointments and therapies, another hospital admission, recovery, more appointments and therapies, more developments...days slipped into weeks, which turned into months. And at some point in the middle of all this daily LIFE, I experienced a startling realization.

We had spent pretty much all of Verity's first year of life holding our breath, waiting...in a sense...to see if she would die.

Does that sound absolutely awful? I was heartbroken when I realized how true it was. We had said goodbye to more little ones in our Trisomy community than I could have imagined possible. Some of our closest little friends were in and out of the hospital, some fighting for their lives and making miraculous recoveries, while others fought valiantly only to slip away.

The unspoken question in our house for so many months--How long would Verity be with us?--somehow evaporated. We submitted requests for therapeutic and adaptive equipment. We registered for the Support Organization for Trisomy family conference. We stopped subconsciously wondering whether our baby would leave us and simply enjoyed living with her.

Do you know what that is, friends?

Freedom.

Freedom from fear and worry.
Freedom from uncertainty.
Freedom from depression and anxiety.
Freedom to savor and relish the little things.
Freedom from expectations.
Freedom to simply...be.


I'd be lying if I said we never feel fear creeping in. (A bout with aspiration pneumonia terrified me as I watched my baby struggle to breathe.) And I'd be misleading you if I said I never deal with uncertainty, or if I said I have managed to perfectly enjoy and cherish Every Single Moment instead of being concerned with what's for dinner or whether the toilets have been cleaned recently.

But overall? Our lives are characterized by far more joy than nail-biting fear. This is a testimony to the grace of God in our lives, to the growth He has allowed us to experience because of the sweet and precious gift He gave us in Verity.

I've told friends that I feel as though we have come out of a long, dark tunnel, that we are finally able to see the light and the beauty every day even though some days are still really hard.

And that to me is FREEDOM.

The Spirit of the Sovereign Lord is on me,
    because the Lord has anointed me
    to proclaim good news to the poor.
He has sent me to bind up the brokenhearted,
    to proclaim freedom for the captives
    and release from darkness for the prisoners,
  to proclaim the year of the Lord’s favor
    and the day of vengeance of our God,
to comfort all who mourn,
     and provide for those who grieve in Zion—
to bestow on them a crown of beauty
    instead of ashes,
the oil of joy
    instead of mourning,
and a garment of praise
    instead of a spirit of despair.
They will be called oaks of righteousness,
    a planting of the Lord
    for the display of his splendor.
--Isaiah 61:1-3

Saturday, June 23, 2018

The Answer to "Does It Get Better?"


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

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

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

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

Thanks for listening."

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

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

So...does it get better?

Oh, yes. Yes, it does!!!



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

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

Saturday, June 2, 2018

Recent Appointments

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

From the GI follow-up:

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


From the Sleep Clinic Meeting:

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

  • Verity's umbilical hernia does not require surgery now.
  • If it has not resolved by age 4, surgery may be done to correct it.
  • No concerns here!
Whew! Coming up next week is an evaluation with a speech therapist and a check-in with the audiologist to see how things are coming with her BAHA (which she is wearing anywhere from 3-10 hours a day in various stints).