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, December 23, 2017

Christmas Thoughts

Y'all...we are about to celebrate Verity's first Christmas! A year ago, I was "great with child" and full of fear and uncertainty. Would we meet our little girl alive? How long would we have with her? What would her needs be, and how in the world could we take care of her along with 8 other children?

I confess that fear and uncertainty are still very much a part of our daily lives...however, joy and thankfulness are powerfully present as well. This life isn't easy, as you have glimpsed if you've followed our journey any length of time at all. But by God's grace, we are moving forward one step at a time. Our little miracle is just over 2 months away from celebrating her first birthday, a milestone we never would have imagined she would reach based on the information we received at her diagnosis. In 2017, Verity:
  • was born without complications and spent her first few minutes outside the womb breathing and crying on her mommy's chest.
  • quickly progressed from CPAP to room air to no oxygen support at all in the NICU.
  • went home after only 18 days in the NICU.
  • began her own growth curve with breast milk via NG tube.
  • had corrective measures for both of her clubbed feet, enduring castings, a surgery, and a boots-and-bar regimen.
  • had G-tube surgery at 2 months of age and continues to be nourished via G-tube.
  • moved with her military family to a new state.
  • met with a number of medical specialists, all of whom have been extremely supportive of us in our efforts to help Verity have the best possible quality of life.
  • has grown and developed in her own way and in her own time, thrilling and delighting hundreds (maybe thousands) of people around the world who have loved and prayed for her.
What a doll. What a miracle. What a GIFT. This is our Trisomy 18 Song of Triumph, and we will sing it loud for all to hear!

To GOD be the glory...
God, the author of LIFE...
God, the One who gives MEANING to life...
God, the One who chose to enter the human experience by sending Jesus to dwell among us...
Jesus--Immanuel--God with us--who lay down his life for us that we might have the opportunity to choose ETERNAL life.

We--Verity's family--wish you a blessed, merry Christmas. If you do not know Jesus our Savior, we pray that you will seek to know the God who created YOU, who loves YOU and gives meaning and purpose to YOUR life.

"For God so loved the world that He gave His one and only Son, 
that whoever believes in Him shall not perish but have eternal life." John 3:16

Tuesday, December 19, 2017

More GI Discussion

Sad news: Verity has been losing weight. She is down to 12 pounds, 5.9 ounces, from a high of just over 13 pounds.

Good news: We have a wonderful doctor. Every time we meet with him, he confirms what my instincts are telling me and helps us see clearly what our next steps for helping Verity should be. I have heard horror stories of not-so-great doctors, and I am beyond grateful for the ones who have been helping us along with our Verity journey.

Notes from today's GI appointment:

1. We are going to switch to continuous feeds of 23ml/hr for 24 hours a day. If this seems to work well, we will increase her feeds slowly until we get to 26ml/hr. We will continue to give Liquigen to boost calorie intake.

2. If we continue to have vomiting issues, we will try Elecare (a formula) at the same rate.

3. We can then work towards consolidating to 18 hours per day of feeds.

4. Upper GI/SBFT as soon as possible 

5. If the new feeding regimen is not helping and there is more than a week's wait for the Upper GI, then we can admit to the hospital for further workup and trials of NJ or GJ feeds and consideration of fundoplication.

After returning home, I was able to call and schedule Verity's GI series for TOMORROW morning, December 20. This test may take up to 4 hours as they watch the barium travel through her digestive system. Please pray that they can see clearly whether there are any anatomical issues that need addressed; also, please pray that over the next few days we can see whether the continuous feeding may be enough to address our current concerns. If we need to do this for awhile to get some weight on our girlie, then so be it. If further intervention is needed, then we pray that will also become very clear to us.

Sunday, December 17, 2017


Poor Verity. The discussion of her digestive difficulties seems neverending. As our G.I. doctor and our home health nurse agree, "What works with Verity one day will almost certainly not work the next."

FAQs...I'm sure I've missed some, but here are the common ones:

Have you considered food allergies, especially dairy?
Many of our Trisomy friends have various food intolerances, an unfortunately common problem in our society, and not just with special-needs kiddos. While I cannot say with absolute certainty that Verity does NOT have food allergies and/or intolerances, there are several reasons I have given up pursuing this as our answer.

  • In May I followed the Whole 30 diet, a strict diet that involves no dairy, soy, or grains, among many other no-nos. There was no difference whatsoever before, during, or after the diet was over. This was during a very positive time of Verity's feeding development, during which she transitioned to the G-tube and began some oral feeds. There was no vomiting other than an occasional issue when she was bearing down to poop in the middle of a feeding. But overall, no intestinal distress to speak of. (I chose to do the diet for personal reasons, not because Verity was having reflux or vomiting at the time.)
  • Along with that, aside from Verity reacting to the formula fortifier she was put on at birth, there really were no major G.I. issues while we lived in Iowa (the first 4.5 months of her life).
  • The G.I. distress began almost exactly the day we set foot in Colorado. I personally believe the altitude has had a significant influence on her systems. Even so, there have been ups and downs within the time period we have lived at altitude.
  • In November, I went dairy and soy free, the top 2 food groups that our G.I. doctor said cause problems. Absolutely no difference, even when we had a couple of "oops" moments and Verity got some frozen breast milk that was pumped before my dairy/soy-free diet. She didn't have a reaction to those feedings.
  • After we switched to open/gravity feedings, we experienced a wonderful period of about a month during which we thought we had found the solution because Verity was doing SO well. Even if there were an allergy to something other than what I have already avoided, surely it would have presented itself?

Have you tried venting her during and after feedings?
Yes. This is what we did when we used an open syringe and allowed the feeding pump to drip into the syringe, and this is what her feedings are like now with the Farrell bag system, which we finally got approved and shipped with our monthly medical supplies. While the first month we did this we experienced fantastic results, unfortunately it is not a guarantee for helping keep the feeding inside of Verity...although using the bags, I am sure, definitely helps keep MORE of the milk inside of her. It's really quite amazing to me that even with being vented, she vomits such a considerable amount out through her nose and mouth. :-(

Have you tried slowing down her feeds?
If we slow them down anymore, we might as well be doing a continuous feed, lol. Currently her feedings are taking 75 minutes.

Have you tried a continuous feed?
While we used to do continuous feedings at night (a slower rate over an 8 or 10-hour period), we have discontinued that because we have so many nighttime issues to deal with already. With a nasal cannula for oxygen plus the boots-and-bar to prevent recurrence of clubfoot, plus the fact that she consistently wakens anywhere from 1-4 times an hour ALL NIGHT LONG...adding tubing and pumping milk into her stomach during the night is just a bridge too far.

What about continuous feeding during the day?
This is definitely a possible next step if we can't find another solution. We have not yet tried this, and I am loathe to do so simply because we are making some wonderful gains with her development in other would be a shame to tether her to the I.V. pole that holds her feeding and Farrell bags during her waking hours, effectively limiting the various activities we are encouraging her to try for her therapies. It's also much more awkward to hold her, since the clamps of the Farrell bag need to be lower than her belly while the bag needs to be higher.

Have you tried spacing out her feedings to give her tummy time to rest?
We experienced some success with this back in late August, and so we decided to try that again recently. Through November, Verity was getting 6 feedings a day (every 3 hours, each feeding taking one hour) with no feedings at night (except for a few times when she woke and was inconsolable and we just set up her first feeding for the day at 3am, lol). A couple of weeks ago we decided to stretch it out again, since 6 feedings a day seemed like a lot for her poor little tummy, especially now that she is closer to 10 months old than newborn. So we tried 5 feedings every 4 hours, and that did seem to help. We increased the volume slowly so that the math worked out for her to be getting roughly the same amount. We have discovered that we can USUALLY give her higher volumes in the mid-morning and early afternoon, whereas she consistently has problems tolerating her early morning, suppertime, and bedtime feedings. On paper the numbers do not look great, since she is nowhere near the volume the dietitian and G.I. doctor would like her to be at. Moral of the story: Math does not always work with a living, breathing, vomiting little person.

Have you had [insert test here]?

  • In late April, Verity had an upper GI done in preparation for her G-tube surgery
  • In early November, we did a 24-hour pH probe. (This revealed a significant level of acidic reflux even though she was on Zantac.)
  • I have asked our G.I. doctor for another GI series, including a small bowel follow through (SBFT) so we can see if there are issues with delayed emptying. Because we consistently have violent vomiting episodes at her suppertime and bedtime feedings, I am wondering if things just get backed up.
  • Because we have seen in the past that UTIs cause an increase in reflux, and because Verity has had 2 confirmed UTIs in the past few months, we received a referral for urology and have more tests scheduled for January 4: another renal ultrasound and a VCUG. We will then consult with the urologist that same day to go over the results. (Her first renal ultrasound, by the way, was when we were in the hospital for her first UTI and major reflux issues. That ultrasound showed that one of the kidneys is a bit smaller than the other.)
  • We've discussed an EGD scope, but since our G.I. doctor really doesn't think that would give us answers that would change anything we are already doing, we have decided not to pursue this since it needs to be under sedation and apparently can't be coordinated with the sedated hearing test that will be happening in January.
  • I'm sure there may be other tests that would be beneficial...if we don't get answers from these scheduled tests that help, we will explore other options.

Does she take any medication for reflux?
Yes. In early September she started on Zantac; however, we discontinued this once we switched to the vented feedings and she stopped puking altogether! But then in late October the problems resumed, and so we started Zantac again. When the pH probe revealed that she still had significant acidity in the reflux, we switched to Prevacid, which she is on twice a day. These medications do not prevent the reflux but instead lower the acidity so that it isn't burning her esophagus. Unfortunately, vomiting through the mouth and nose is always going to be uncomfortable no matter what...

Why don't you just get a Nissen fundoplication?
After interviewing moms whose little ones have had this surgery, where the top of the stomach is wrapped around the bottom of the esophagus to supposedly prevent the possibility of vomiting, my "gut" instinct (no pun intended, I promise) is that this would be one of our last resort options. For some, the surgery helped for a short while only to leave the family right back at the starting point, as their little one began vomiting again only worse. I've heard enough moms say that if they had to do it over again, they would NOT do the Nissen. Since I've heard more problems than success stories...right now I do not feel this is our solution, but I trust God will make it clear if we need to decide otherwise.

What about a G-J tube?
Some babies end up with this different feeding tube that delivers nourishment directly to the intestines, bypassing the stomach altogether. This would require a slow, continuous feed probably about 18 hours a day, and I've addressed my feelings about this above. In addition, it would require yet another surgery, and if the G-J tube comes out, we can't replace it ourselves like we can the G-button.

So...what now??
Good question. Since I keep hearing from other Trisomy moms that their little ones eventually outgrew these common G.I. issues, I kind of feel like we just have to grit our teeth and stay the course. I'd love to get a definitive answer--perhaps the G.I. test series will show us something. But meanwhile...we just keep doing the best we can, feeding and loving Verity the only way we know how. She may not be on any growth charts; she may not be gaining in ways that are clearly evident: Her October, November, and December weights were ALL. THE. SAME...but she grew 2 centimeters in length! Her cheeks are round! She has rolls, rolls on her wrists, rolls on her thighs, rolls on her upper arms! Her color is great! She is getting sturdier and has amazing head control! She is interacting more and reaching for toys! She laughs and smiles! By no means is she wasting away, even though it seems she vomits half of her feedings 2-3 times a day.

I've come to the end of my computer I need to take over Verity duty so that Ted can take the rest of our crew to the Family Fun Night at church. We divide and conquer a lot these days; anytime a feeding is involved, it's easier just to keep Verity at home and deal with whatever that will involve. We are grateful to have a daytime nurse Monday through Friday...but today is Sunday! So here I will leave you. If there's a question I haven't addressed, feel free to ask in the comments! We really do appreciate everyone's concern for our sweet Verity. I know everyone would love to help us find "The Solution." We continue to pray that God will heal her or help us know how to help her.

Monday, December 11, 2017

Catching Up...a Bit: Sleep Study & Results

Oh, my has been about a month since I updated Verity's blog!! Aside from what I already wrote from last month, November was the Month o' Dental Appointments: myself plus 7 children for regular cleaning and exams, plus 3 children needed sealants fixed/replaced. Only two of those days allowed for back-to-back exams, which meant I was taking someone to the dentist 7 days in November and 2 in December! Oy! far as Verity's schedule, she didn't have much going on until toward the end of the month aside from her weekly PT and OT sessions. But we did have a couple of significant things happen that last week in November, one of which isn't really worth writing too much about other than to say we had a three-hour, in-home assessment with a navigation coordinator who is helping us write up our application for Medicaid waivers, which can help Verity get more assistance in the future. Since I won't know anything for awhile on that, I will just leave that there and continue with the next and more pertinent item.

Our sleep study, which was originally scheduled for January 8, got bumped up when someone cancelled and we were able to get in on the night of November 26. This was a huge blessing we weren't expecting! It was a L-O-N-G night for both Verity and me...Verity was NOT thrilled with all the wires and gear she had on, but after an hour of screaming (!!), she finally gave up and fell asleep for a couple of minutes, sneezed, woke herself up, and screamed another 10-15 minutes before finally sleeping about an hour. We woke several times in the next couple of hours, and then she had a really rough patch from about 2-3am, finally settling down and sleeping about an hour before waking a few times before the respiratory therapist finally put us out of our misery at 5:45am and let us go home, lol.

The results of the study were sent to our ENT immediately, and we followed up with him a few days later at the earliest appointment they could give us. Not too surprisingly, we learned that Verity has a form of sleep apnea, severe obstructive apnea, although apparently not as severe as some of the kiddos we've met online! (One poor little guy had over 50 episodes an hour! Verity's average was 17.) The good news is that with just a TINY bit of oxygen, those episodes nearly disappeared altogether. So after about 24 hours of various phone calls, we got our oxygen and supplies on Friday, December 1. She only needs 1/32 of a liter per minute, and she only needs it at night, but we haven't QUITE convinced her that it is in her best interest to keep the cannula in!

Now that it's been over a week, we have a bit of a regimen...unfortunately, it still does not include the boots and bar, which seemed to be a bridge too far in getting her to sleep. So we are working on giving her some B&B time in the day until we can finish this transition with the oxygen. It works best when she is pretty sleepy if not already asleep and we can sneak the cannula under her nose and secure it onto her cheek patches.

We are making incremental progress...while we are still waking multiple times at night, it does seem to be less often, and it seems we all get deeper sleep when we are sleeping. Last night was the best yet...though it took a bit of time to settle her down, Verity slept maybe 2 hours, woke briefly, slept an hour and 20 minutes, had an absolute meltdown over the cannula from 1:50 - 2:15am, finally fell asleep again, and didn't wake up until nearly 9:00 this morning!!

I will end this update here, as the GI issues warrant a separate post...but meanwhile, we praise God for revealing the apnea to us sooner rather than later and for allowing us to get started helping Verity on the road (hopefully) to better sleep patterns.

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!)

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 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. 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, 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 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 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 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 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 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, 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! :-)