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)

Sunday, November 12, 2017

GI Mystery

A recap of Verity's GI issues for those who don't know the history:

  • Fed by NG tube from birth through 2 months (Feb 28 - May 1)
  • Fairly severe reflux from 4-6 weeks; vomiting stopped when we quit using formula fortifier to give extra calories to her breast milk feedings
  • G-tube placement on May 1; began oral feeding attempts
  • From 2-4 months of age (May - early July)--very little vomiting or spit-up episodes; making gains with oral feeds
  • Starting in month 5 (mid-July, following a move to higher altitude), more and more reflux and vomiting episodes, culminating in a trip to the ER shortly after her 6-month birthday (Aug 31)
  • During the hospital stay, discovered and treated a UTI with a round of antibiotics; started Zantac
  • Zantac gave little visible relief; however, we discovered the "open syringe" method of feeding (like a gravity feed, allowing venting to happen during feeding times), and Verity had significant improvement. Hooray!
  • Good feeding times lasted about 4 weeks (mid-September through mid-October)
  • Discomfort during feeding, vomiting, and erratic bowel movements surfaced and lasted several weeks, getting progressively worse. 
  • Several doctors' visits plus pH probe in late October; increased Zantac dosage.
  • Discovered another UTI after taking a culture October 27; treated with another round of antibiotics
Last weekend, almost immediately after returning home from the 24-hour pH probe in the hospital, Verity began having severe intestinal difficulties. The vomiting was insane; there was no sleep for any of us; and every feeding was incredibly stressful, to the point we skipped a feeding on Sunday and bought Pedialyte in a last-ditch effort to get something into her body so we could avoid an ER visit. We were having to scale back the volume of her feedings, at one point going as low as 70ml (we had been up as high as 95ml in early October). 

I called Verity's GI doctor and her PCM; I discussed things in depth with our home nurse; I posted in Verity's Facebook group asking for prayers; and I posted in one of my Trisomy parent groups asking for insight. From Sunday night to Tuesday morning a huge transformation took place, and it became clear that we were on the right track!! So many people offered ideas and suggestions, and I promised to give an update, so here it is as best as we can put things together. As is probably often the case, multiple factors are undoubtedly in play, and we are hoping and praying that we have hit the right combination of things so that the relief she has had in the last 5-6 days will be long lasting indeed.

Here is what we did:
  1. Many people stated their children had reacted to antibiotics a week or so into the regimen. Verity had been on hers for a week, and we had seen a definite correlation to her major vomiting episodes and the feeding times that contained her antibiotic doses as well. So, starting Sunday, we separated the medicine from the feedings and instead gave it between times with plenty of water. Voila! The vomiting stopped!
  2. Unfortunately, the discomfort during feeding times did not stop. We wondered if the antibiotics were not adequately handling the UTI--both this episode and her other infection showed the E-coli strain of bacteria, and, having learned that their barbed shape makes them difficult to actually get rid of, we turned to a more natural solution that we felt good about giving Verity (unlike the antibiotics--which we dutifully finished despite our dislike of them). A friend recommended U.T. Vibrance, which Ted picked up on his way home from work on Monday. We gave Verity 2 doses Monday afternoon and evening, and by Tuesday morning, our nurse was amazed, saying, "This is not the same child I left yesterday!" Verity was completely relaxed all day Tuesday, and Tuesday through Thursday nights we actually got some decent sleep! She slept several hours straight, and then when she did wake up, it was only once an hour for a few hours. I think Ted was actually able to sleep one of those nights all the way through!
This tells me that Verity's UTI was indeed probably the biggest underlying cause for the vomiting and discomfort. Poor baby was MISERABLE, and it was absolutely heart-wrenching to hear her crying and to see her writhing her little body in pain. I would have done anything to take the pain and agony from her.

At the same time, we know we are still dealing with significant acid reflux--this morning Verity vomited for the first time in a week, and there are still times when she is fussy and we can tell she is feeling the acid in her esophagus. When I spoke with her GI doctor this past Tuesday, he told me that the pH probe showed that the acidity in her reflux is concerning...she was already on the highest dose of Zantac they could give her, and that was in her system during the test, so the levels of acid that she was STILL dealing with meant that we needed to take another step in relieving this for her.

Thus, a new medication, Prevacid, is on order. We were unable to get it for several days due to it being a "special order," and so we hope to have it in hand tomorrow so we can begin giving that to her (in place of the Zantac) and see if that makes a difference. If not...well, then I'm afraid we will have to consider surgery. is Sunday evening, a week after our nightmare weekend, and I am incredibly thankful to be on the other side of THAT awfulness. Verity is resting peacefully during her feeding right now, almost but not quite asleep. We have had better rest than we've had for a long while, even though she has still awakened us multiple times the last couple of nights. Overall, we feel the trend is positive!

Many folks know we love our Young Living essential oils! And my report wouldn't be complete without sharing a couple more ways we have supported Verity's health with natural means:
  1. When constipation became a problem, we began putting a drop of peppermint oil in a clean diaper and letting it soak in before putting the diaper on her. I am pleased to say that not only has Verity pooped daily...but she has also produced multiple times a day for most of those days!
  2. Usually we rub a "Wellness Blend" on the bottoms of our feet nightly; when we wondered if the UTI was just being stubborn, we began applying that to her feet throughout the day as well. The blend is a homemade blend using the following Young Living essential oils: Lemon, Oregano, Frankincense, Thieves, and Melrose. (Side note: lemon in particular supports good urinary tract health! And those other oils have constituents that really support our immune systems!)
We are grateful for the many prayers offered on our behalf for sweet little Verity. I look forward to visiting with our dietitian, who comes to the house on November 16. By then Verity will have (hopefully) a few days with the new medication in her system, and hopefully we will be able to further increase her intake. (She is at 85ml per feeding now; we tried 90ml for couple of feedings on Friday but it seemed a bit much.)

Thanks for reading if you made it this far! We will keep you posted!

Thursday, November 2, 2017

GI Update and the pH Probe

Following some significant increases in reflux, plus communicating with our GI's office about setting up a pH probe study, we decided it would be good to have an appointment with our GI doctor last Friday (October 27). This was scheduled before the scare that took us to the ER a few nights beforehand, so it was good to have a follow-up already in place.

I don't have my notes with me--I'm writing this from the hospital while Verity's pH probe is in place and we are here for 24 hours of monitoring. But as best as I can remember, here are the main points from this visit:

* Verity's weight gain has tapered slightly; she only showed about 1-2 ounces of gain in a 12-day period.
* Verity had begun taking Zantac after our ER visit; Dr. S increased the dosage from 1ml to 1.2ml twice a day.
* Dr. S wanted to test her urine, and we learned the following Monday that Verity has another UTI.
     --She is now on another round of antibiotics (Septra).
     --We will schedule a visit with her PCM regarding her having two UTIs in a two-month period.
* Since we are having difficulties increasing the volume of breast milk (we had decreased to 85ml per feeding and are now today at 90ml), he asked us to try fortifying with Liquigen and gave us a sample bottle. (Thankfully this isn't like the formula fortifier we were using in March and April that unsettled her tummy so--this one's ingredients are much less suspect.)
* We all agreed the pH probe will give us valuable information about the frequency and intensity of the reflux, which hopefully will give us an indication of the best way forward for Verity. Two more extreme possibilities are a Nissen fundoplication and a G/J tube, neither of which is really on our radar, although we would consider a Nissen if it comes to it.

Following this visit, we had nearly a week before our pH probe was scheduled, during which Verity received her medications faithfully (thank the LORD for our new nurse who helps us with all of this!). Every single day this week, Verity has had more than one bath due to her vomiting. The good news is that she has been pooping daily--sometimes more than once!--whereas the previous two weeks she was on more of an every-two-days schedule. (Side note: peppermint essential oil. That is all.)

There have been at least a couple of times in the last week when Verity has not only vomited an exorbitant amount out her mouth and nose, but she has also stopped breathing long enough to make this mama panic. I was alone with her early this morning when it happened, and I haven't been that terrified in a long time. Now, of course, she is sleeping peacefully!! We are having the best nap she's had in I don't know how long!! I can't help but wonder if it will skew the pH study...

Which leads me to why we are here at the hospital: the pH probe! We had to be here at 10am for an 11am start time. It was already a stressful morning after Verity's vomiting/choking/not breathing episodes following what was to be her last feeding before coming to the hospital. (They needed her stomach empty for placing the worries there! Sigh.)

We spent about a half hour in a waiting room and 2 hours in a pre-op/procedure room. Well, I was in the room 2 hours. Verity was taken to get the probe placed, then came back, then x-rayed to ensure proper placement, and then we hung out until our room was ready. We finally started a gravity feed at 1pm, 7 hours after her last feeding! Poor pumpkin was hungry! Of course she fell asleep in time for us to have to move...

We hauled our stuff to the pediatric unit, and then we settled into our room, which we are sharing with a sweet little gal named Cheyenne. Finally Verity fell asleep, getting a 3-hour nap, possibly the longest uninterrupted sleep she has had for a very long time, since her daily naps range from 5-30 minutes and the last few nights she has awakened an average of 2-3 times per hour.

So, how does this work? The probe is placed in Verity's esophagus, and we have an electronic "diary" of sorts so that I can note a few pieces of information, which will then be compared to the pH levels inside her esophagus. I punch buttons to note:

* When Verity is upright and when she is lying down;
* When her feeds begin and end; and
* When she is vomiting (1), fussy (2), or having difficulty breathing (3). (Thankfully I've only notated the latter one time, and that was shortly after the probe was placed...we wonder if she may have been gagging a little. She turned red and didn't inhale for a few seconds, but it passed quickly, unlike this morning's scary episodes.)

So far no vomiting, which is wonderful! But we are praying that the 24 hours of monitoring will show a good picture of what Verity deals with on a daily basis. I have noted quite a few "fussy" times, and more often than not, the pH number is low (indicating acidity). It will be interesting to see how the night goes, now that she has napped so well in the afternoon (another half-hour nap followed the 3-hour nap!). I'm prepared to stay awake all Facebook and blogs may explode, lol.

I don't know how long it will be before we get results from this test, but we will of course keep everyone posted. Thanks for praying!

Cardio Report

I posted a video report on Verity's Facebook page the day we visited the cardiologist, so I will just give a very quick rundown here.

The last time we got an echocardiogram was in Omaha in late April. At that time, the docs said that Verity's VSDs were not really a concern any longer and recommended that we get a baseline echo done once we got settled into our new location in Colorado. So, 6 months later, we were able to do just that, getting not only an echocardiogram but also an EKG (pictured below).

We are pleased to report that Verity's heart looks great! Tissue is growing over the large VSD (the one initially big enough to require surgery in her first year), and the medium-sized one is not causing problems, allowing blood flow appropriately. The pressures are balanced, and the cardiologist said that the way Verity's heart is, we EXPECT a heart murmur, and it is nothing to be concerned about (as I was following the ENT's report of hearing a murmur, the first time anyone has said anything about it).

For a more detailed report, showing the diagram the cardiologist gave me, check out the video on her Facebook page. For now, I'll leave it at this: it was a positive report, Verity did great during the exams, and we don't have to go back for another 6 months!

ER Scare

On October 24, as we were eating our dinner, we had one of the most terrifying experiences we've ever had with Verity. We heard her sputtering (a sure sign of reflux and vomiting to come), and before we could do anything, she was spitting up blood out of her mouth while blood shot out of her G-tube, up the extension tubing and into the syringe. As Ted wiped her mouth and tried to calm her, I took a hurried photo and posted it to one of my Trisomy groups, asking what was to be done. Quick responses confirmed out gut feeling: we needed to take her to the ER ASAP! I packed an overnight bag, and we passed the childcare torch to the teenagers (Charis was just returning from a babysitting job herself).

Many people began praying for us as we posted to Verity's page. There are multiple things that could cause bleeding like this, many of which are pretty dire. I sat in the back seat with Verity, trying to keep her awake and praying like crazy. We've made trips to the ER with children before--even with Verity before--but never had I experienced the feeling of such a weighted question hovering unspoken in the air: Would this be goodbye? The beginning of the end? 

We were ushered quickly into a room in the ER, bypassing everyone else in the waiting room. The serious look on the doctor's face only intensified our feelings of dread. It didn't help any that Verity had another bloody coughing episode soon after we got there.

Verity was a little trooper, getting her IV like a champ. She got chest X-rays and a CT scan done, and then we proceeded to wait and answer questions as people came and went. The doctor was on the phone multiple times with a specialist in Denver, and about 3 hours later, we had an answer!

Of all the possibilities, this was an answer we could handle: a nosebleed down the back of the throat! Whew! Poor made sense, with all the suctioning we have had to do in recent weeks because of her progressively worsening reflux. But oh, it was scary! Everyone assured us we absolutely needed to come in to verify that it wasn't anything worse, but when she was in such good shape and the tests were not showing anything, not even an infection (though we discovered a UTI a few days later, sigh), we were relieved to be able to take our sleepy baby and our tired selves HOME.

Saturday, October 21, 2017

All Kinds of Check-ups

Here are the nitty-gritty after-visit summaries of Verity's recent appointments and a quick word about an upcoming visit.

GI, September 29, 2017
BMI: 15.33 (14th percentile)
Weight: 11lbs, 13.5oz (< 1st percentile)
Height: 23.31" (< 1st percentile)

1. Swallow study ordered. [Scheduled for November 30--in the meantime, we need to work with Verity to help her swallow more than she currently is!! The study requires at least an ounce, and she only takes about 5ml on a good day.]
2. Zarbees multi-vitamin recommended [now using daily]
3. Trial of a powdered probiotic recommended [now using daily]
4. Follow-up in 2-3 months to check on weight, feeds, etc.
5. Call or message with weights every 2-3 weeks.
6. Work toward 105-110ml per feeding.

Since this appointment, Verity's reflux problems have resurfaced. Every time we try to bump up her feeding amounts, it seems we see an increase in vomiting and discomfort. We had gotten her up to 95ml, but we went back to 90 the last couple of days and she is still acting uncomfortable during her feedings and shortly after. We've slowed the rate down as well. I spoke with a nurse from the GI office and we are planning to do a pH scope to determine the level of reflux and use the information to help us decide the next course of action. Seemingly, there are two options: medication and a Nissen fundoplication. We do not yet have a date for this test.

ENT, October 16, 2017
BMI: 15.80 (23rd percentile)
Weight: 12lbs, 3.9oz (< 1st percentile)
Height: 23.35" (< 1st percentile)

[This doctor was very thorough with his notes! I'm going to copy most of them here and simply link to definitions of the more unfamiliar terms and place explanations in brackets.]

"Verity is a 7-month-old female with a hx of Trisomy 18, hypotonia, aspiration with G-tube placement and bilateral hearing loss. Most feeds are happening through the G-tube. Family had a sleep ABR [Auditory Brainstem Response] back in May of this year that showed severe CHL [Conductive Hearing Loss] in the right ear. MOC feels that the hearing has improved over the last couple of months, no wearing hearing aids at this time. Family has not been evaluated by an ENT prior to today. There are concerns about sleep apnea based on her sleep patterns, retrognathia, hypotonia and her diagnosis of Trisomy 18.

Examination today showed poor tone, not able to hold her head up. Bilateral external auditory canal stenosis, unable to view the ear drums [her ear canals are abnormally narrow]. Some soft tissue narrowing of the nose at the vestibule, improved nasal airway on the mucosal side. Flexible laryngoscopy was performed and showed some mild nasal narrowing in the midportion of the nose, no adenoid obstruction, intermittent collapse of the pharynx when she was bearing down. The vocal cords were mobile with a good view of the larynx, no prolapse of the tongue.

I would like to repeat the ABR during sedation and obtain bone conduction for both sides. I would recommend hearing aids of some form sooner than later. We will order a sleep study to rule out sleep apnea. I would like to see the family back after the sleep study and the hearing test."

Currently the sleep study is scheduled for January 8, but we are on the waiting list in case something opens up sooner. If so, it would be a same-day deal, so we'd need to drop everything and make haste to the sleep lab!! I hope we can get some answers sooner rather than later...these awful nights are killing us!

Orthopedic, October 17, 2017
I don't have a lot of written notes on my paperwork, so I'll try to remember the main points...

1. Verity has responded very well to the boots and bar--we are cleared to use it for nights only and not concern ourselves with nap time since her sleeping habits leave much to be desired.
2. They did change the angle her boots were fixed to the bar so that her feet are not turned outward nearly as much. We hope this is making it more comfortable for nighttime sleeping! 
3. New boots will be fitted on Monday, as her toes are nearly hanging out of her old pair!
4. They took an X-ray of her hips, as there was concern about less movement in her left hip. Things look all right for now, but there is danger of her hip coming out of socket. We are to do certain stretches with her diaper changes to help with this issue.
5. They want a follow-up with the PT in 3 months and with the doctor in 6 months.

Coming up: 
Cardiology (Echocardiogram), October 26, 2017
This appointment is to give us a baseline echo of Verity's heart; when we last examined it in April, everything looked wonderful. The VSDs were all closing, everything was balanced, no heart murmur. the ENT visit on Monday, the doctor heard a murmur, the first time this has happened. He said that if HE could hear it, then it definitely needs checked, since that isn't his specialty. :-/ So...I wasn't concerned about the echo appointment before, but now...I am...a bit...

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!)