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)

Wednesday, May 16, 2018

Update: Spring Appointments

Recent posts have detailed the couple of respiratory illnesses that Verity had in March and April, so now it's time for a general update on the slew of other appointments we've had over the past few months! October was our busy month in the fall as the referrals finally went through and we started seeing her specialty providers, and April of course was the 6-month mark for follow-up. So here is the list of what all we've been up to!

March 22: Pulmonology
The pulmonology follow-up was scheduled even before Verity's first illness struck, but it was timed well as she had been out of the hospital about 10 days or so. At that time her lungs sounded amazingly good, and since we had never had any lung issues before, the doctor said she would leave it up to the Sleep Clinic doctor as to whether or not she would continue to follow Verity. Of course, little did we know that Verity would have pneumonia about a month later! Sleep clinic is scheduled for May 25...

April 2: Ophthalmology
We drove 45 minutes to get to Ft. Carson to spend a whopping 5 minutes with Dr. B, who assured us Verity's eyes are looking great and he doesn't need to dilate them again until our fall appointment. Okie dokie then.

April 17: Orthopedics
At this follow-up appointment we got another hip X-ray, which indicated her left hip is still stiff but not any worse than in the fall. Her feet are looking good and we are to continue using the bar (supposedly naps and nighttime but in reality more like 2-3 hour chunks a couple of times a day).

April 19: Pediatric Visit
We needed a doctor to look at Verity's umbilical hernia, which was repaired with her G-tube surgery May 2017 but has been flaring up again recently. She ordered an abdominal ultrasound. (This is the day we realized Verity was getting sick, and at 3am the next morning we took her to the hospital, where she was diagnosed with aspiration pneumonia.)

April 24: Renal ultrasound and barium enema
The ultrasound looked normal (per the follow-up the next day), and the barium enema did not reveal any particular reason for Verity's difficulty pooping, although it did show a "tortuous" pathway. (Once she gets started going she does pretty well, but we frequently have to give her a liquid suppository to start the process.)

April 25: BAHA fitting
Verity got her Bone-Assisted Hearing Aid, which fits on a headband! We learned lots of details about how to use this device and have a whole bag of STUFF to go along with it. She wears it in stints, as it is very overwhelming for her to have it on all the time at this point. Slowly we are working up to it! She isn't terribly responsive, although we know for sure when she is DONE!

April 30: Adaptive Stroller Shopping
We went to an equipment provider that we know of through The Resource Exchange (our home therapy program) to look at and take measurements for an adaptive stroller for Verity.

May 3: Echocardiogram
Our cardiologist is very optimistic about the way Verity's heart looks right now. Her large VSD has completely patched up! She still has a teeny tiny one that causes her heart murmur, but everything is balanced, and he does not think PH will be a problem. Whew! He feels comfortable waiting another year before we do another echo.

May 4: Post-hospital follow-up with PCM
Verity had been off oxygen for some time before we had this appointment, and she looked quite well. Her PCM was pleased.

May 7: Abdominal ultrasound
This was a pretty quick appointment, but we didn't hear anything about the results until I asked a week later. We have a referral to see a pediatric surgeon since clearly the hernia is there.

May 15: Dietitian assessment
Our Verity weighed in at 14 pounds, 14 ounces!! And she is 26 inches long now!! In less than 2 weeks, she will be 15 months old...15 pounds by 15 months!!! Clearly she is growing and thriving on the Nourish formula. Now that she is 100% on this whole-foods mixture (plus plenty of water), our next step is to meet with the GI doc and formulate a plan for compressing her feeds so that she can get on more of a bolus feeding schedule. Her vomiting can still be a problem, particularly when she is bearing down to poo or pass gas, but it is much less frequently to be sure. I'm not going to lie...I would LOVE for her to not be hooked to the feeding pump 24/7. But...counting my blessings. Our baby is growing and thriving and becoming SO much stronger and sturdier!

In between all the above listed appointments were nearly weekly visits to the chiropractor as well as nearly weekly occupational and physical therapy sessions in our home.

May 25: GI follow-up and Sleep Clinic

May 31: Surgery consult

June 6: Speech evaluation

June 7: BAHA check

Whew. That's all for now, folks!!!

Friday, May 11, 2018

Pneumonia and Recovery

About 6 weeks after Verity's overnight hospital stay in March, we were back again after monitoring her at home being unable to keep her sats up. I had taken a nap in the early evening, knowing it was going to be a rough night, and spent hours tweaking her o2 and watching the numbers fluctuate on the pulse oximeter. When her heart rate soared over 200 and wouldn't come down, I woke Ted and we packed up for the hospital.

Unlike the previous ER visit, this one involved lots of tests. We were admitted with the diagnosis of aspiration pneumonia. Since I had been awake all night, I drove home after Ted and Verity finished the admissions process, swapping out with him the following day (and bringing a diffuser plus essential oils, lol).

The scariest part of the whole thing was watching Verity's labored breathing. Her retractions were unlike anything I had ever seen. I was hoping to get her on CPAP or BiPAP, something that we felt would ease the difficulty she was having with her breathing, but they only do that in the PICU (at this particular hospital), and we were in the pediatric acute care unit. (Don't ask me why they can't bring it to those rooms!!) The doctors did listen to my concerns and said they were monitoring her to see if she needed to move to PICU. She never did. Amazingly the nights were not too terrible; it was the afternoons where she seemed to have the acute episodes.

This visit was three days and two nights, and once again we were discharged to come home on oxygen (1/16L prescribed, but we did have to adjust depending on her sats). Verity had an IV in the hospital, but we were given a prescription for "oral" (i.e. G-tube) antibiotics at home. Thankfully she did not have any adverse reactions to the medicine.

It has been about 3 weeks since our hospital visit, and we have had a number of appointments since then (many unrelated to her pneumonia). Overall she is doing quite well, although she has been noticeably sleepy (regrettably not always during the night--hence my writing this at 2:30am!). Every now and then we see a low grade fever, and she has had days where getting a smile out of her is nigh impossible. But for all the fussy periods, she does have her happy, playful times as well, and thankfully her vitals keep looking good. She came off oxygen maybe a week or so after we got home from the hospital. (These weeks have been a blur with all our appointments, which I will detail in a separate post.)

I am thankful Verity seems to be robust and healthy enough to bounce back so well from such a scary illness. But I confess that I will never be able to shake the sense of dread that looms over us whenever we are making a hurried trip to the hospital--we've seen too many babies fly to heaven to take for granted that we will always be able to bring her home.

Sunday, April 15, 2018

Weathering Verity's First Real Sickness

March was a busy month for Verity! In between her big birthday party and getting her first car, we had an emergency trip to the hospital along with a brief (30-hour) stay in the pediatric unit. The week leading up to Verity's party, a few of our kiddos had been sick with some kind of respiratory junk, the first time in a long time we've really battled anything other than minor sniffles. Thanks to our wellness regimen, we were able to contain things pretty well--the kids who did get sick were better within a couple of days, and we managed to keep them as far away from Verity as possible. I had every diffuser in the house kept busy disseminating our essential oils into the air, and we oiled everyone's feet at night and drank a lot of Thieves tea! It seemed that Verity, Rhema, and I were going to escape unscathed.

But alas, in the end Verity did succumb. Frankly, I'm amazed that she was the last to get sick! Her immune system does not seem fragile at all! But of course it hit over the weekend...our nurse warned us on Friday that she suspected something was coming on, and sure enough, Saturday morning Verity was just not herself. She had a low grade fever Sunday afternoon, and we decided to put her oxygen on for a bit of support. We were hopeful that we could ride it all out at home.

But Sunday night things took a turn for the worse. We were so grateful that we had a nurse on duty overnight! She worked with our oxygen tanks as needed but our supply wasn't enough (we only have 2 tiny tanks because we were prescribed a minimal amount--which we aren't even currently using--to help with OSA). We learned later that one of our valves was faulty, so we had an empty tank we thought was full.

Anyway--by 4am we were making plans to take Verity to the hospital, but before I could collect my thoughts and my things, our nurse told me I needed to call 911 instead. Verity was non-responsive and turning dusky. The EMS team arrived quickly and gave Verity a nebulizer treatment and more oxygen before we strapped her into her car seat and secured that into the ambulance. I rode along with her, and it was obvious that the treatment had helped significantly--she simply sat quietly, looking around!

They never did any testing to find out what respiratory thing she was fighting, but whatever it was, it didn't knock her out too long. We were admitted to the hospital and stayed overnight. Verity slept almost the whole time we were there. We knew she wasn't feeling well because she never fought her cannula! The next morning, though, she was doing well on minimal oxygen (she was only at 1/4L after arriving anyway), so we were discharged with more tanks from our medical supply company and orders to keep her on 1/8L probably for "a couple of weeks."

Three days later, we followed up with her PCM, and after a half-hour trial, we were able to ditch the oxygen! Of course she was heavily monitored, but praise the Lord we never did have to give it to her again. And a follow-up with her pulmonologist a week after that also gave good news--she doesn't think Verity needs to be followed, as her lungs are (and always have been) so clear. However, we did put another follow-up appointment on the schedule just in case the sleep clinic (scheduled for the end of May) doctor decides that Verity should be seen by pulmonology again.

Sunday, April 8, 2018

New Resource for Trisomy Moms

March was Trisomy Awareness Month. I was pretty active in sharing things on Verity's Facebook page and a bit on Instagram (I'm fairly new to that world), but I completely neglected this blog! Some of us Trisomy moms were talking about what we wish we would have known, or what we would have told ourselves if we could speak from our present viewpoint to our distraught past selves when we first learned of our child's diagnosis.

From those discussions a blog was born. "More Than Ten Percent" seeks to share stories of surviving the first year as a Trisomy mama. The name comes from the fact that most of us were told at diagnosis that at the most, only 5-10% of these babies live to see their first birthdays. The truth is, when babies are given interventions, closer to 35% of Trisomy 13/18 babies reach that milestone.

If you'd like to see Verity's and my contribution to the blog, please check it out! And do read other stories as well. While there are similarities, each journey is so different. It just goes to show that doctors really have no way of knowing for sure what will happen. We pray that our stories can be a blessing and encouragement to parents who are struggling with a new and unexpected diagnosis.

Go, Baby, Go!

Verity and about a dozen other kids in our area got to participate in a neat program for special needs kids who particularly need help with mobility. The Resource Exchange (the program through which we get our weekly at-home therapy sessions) partnered with area sponsors and volunteers to provide little cars for the kids. (Almost 16-year-old Tobin lamented that Verity got a car before him, lol.)

Our family arrived at the event center at a local mall to get Verity fitted for her car. She was by far the smallest participant, so she needed a lot more modifications, which unfortunately meant that she wasn't able to participate in the grand parade at the end of the morning's efforts. But, we have a car! And while it may need a few tweaks, overall it seems to work for her, and we look forward to taking her out in it when the weather is nice and we have enough people available to make sure it's safe!

To see a video of Verity "driving" her car (she pushed the button to make it start!), you can go here!

Look! It's Trisomy 18 BLUE!
Perfect, since March was Trisomy Awareness Month!

The initial assessment: how can we keep her
seated safely?

See the big red button?!
That's what she pushes to make it go!

Lots of people brainstorming ideas for the best way
to make this work for Verity

Taking a break to be silly with Daddy

Birthday Bliss

Where does the time go?! It's been over a month since we had Verity's birthday party (theme: "Joy comes in the morning"), but I still smile in delight when I think about that special day. Out-of-town guests included my parents and two dear friends who flew to Colorado to spend some time with us and help prepare for the part. On party day, the weather was beautiful--sunny and warm--and we welcomed dozens of friends and loved ones who chose to spend part of their weekend celebrating this milestone with us. It was so precious to visit with everyone and to testify to God's faithfulness in this journey. 

We don't have any way of knowing how many more birthdays we will be able to celebrate with Verity, but somehow, now that we've passed the One Year Milestone, it seems as if we've let out a collective sigh of relief. We don't take for granted the time we have with her, but neither are we anxious about impending doom, a feeling that weighed us down for much of the past year. We know with Trisomy 18 we will never be completely free of a hovering "what if," but Lord willing, we are learning to treasure the moments we do have--not only with Verity, but with each of our children, for we know that our lives are but a mist in light of eternity. May we rise each morning with joy in our hearts no matter the circumstances.

Friday, March 9, 2018

It's a One-derful Life

And just like that, Verity is ONE year old! The days (and nights) were long, but this last year really did seem to go by in a whirlwind.

After a whopping ONE hour of snoozing tonight, I gave up and brought my fussy girl downstairs so my hubby can sleep alone in our comfy bed. (He had Verity starting around 2:30am last night.) As I snuggled her on my shoulder, I marveled at how solid she feels now, all 13 pounds, 14 ounces of her. I am thankful for how she holds her head up so well I don't have to support her neck with my other hand (which makes carrying the feeding pump on a pole that much easier). I am thankful that her feedings are manageable and no longer causing her to vomit multiple times a day. I am thankful that on the whole, she is a fairly content, happy baby--something I honestly did not think we would be able to say when we were struggling to keep food in her belly and sleep longer than 45 minutes (or less) at a time.

We really have come a long way.

A snapshot of Verity at ONE year, ONE week, and ONE day:

  • 13 pounds, 14 ounces
  • 25 inches long
  • Fed via g-tube 24 hours a day, soon to be a ratio of 1/2 breast milk and 1/2 Nourish (an organic, whole foods formula)
  • Starting to try purees--we are not having luck with liquids, but two days of smushed avocado on a spoon have been a decent start to oral feeds! I have no assumptions or expectations, only excitement and gratitude.
  • Rolls from back to sides and sometimes from tummy to sides
  • Reaches for toys
  • Tracks people and toys visually
  • Loves bright lights
  • Smiles and chortles
  • Does silly things with her mouth: blows raspberries, sucks in bottom lip, etc.
  • Loves her pacifier and holds it herself with her hands (still has a weak suck)
  • Is not on oxygen at night...long story, but bottom line is we value sleep, and we think the reflux had much to do with the obstructive apnea. Waiting for another sleep study...meanwhile, the pulse ox assures us that her sats are great.
  • Has physical and occupational therapy sessions once a week at home.
  • Gets her workout from her day nurse, who faithfully helps Verity stretch and use her muscles throughout the day.
  • Has a night nurse Sunday and Monday nights for 8-hour shifts. (Yay, sleep for Mom and Dad!)
I'm sure there are other highlights I should list, but it is nearly ONE in the morning, and since Verity has drifted off to sleep, I am going to lie down next to her on the couch and see if I can get some rest myself!