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, January 21, 2018

Genetics Appointment

On Friday we drove to a Denver-area children's hospital to meet with a genetics counselor and doctor. I honestly wasn't sure what the purpose of this appointment was, but even though we didn't gain a huge amount of information, I still think it was beneficial.

First things first: Verity has gained weight! As you may remember, we switched to a 24/7 continuous feed when we saw that she had been losing weight with all her terrible vomiting issues. In exactly one month, Verity gained 13ish ounces, so she is now 13 pounds, 3.1 ounces. And she is now exactly 2 feet long!

One wonderful thing: we were given a hard copy of the Care Book, which is a resource from SOFT (Support Organization for Trisomy 18, 13, and Related Disorders). I had started reading the online copy, but to get all 70-some pages in a printout was wonderful and told me right off that this doctor is up-to-date with the research!

As an aside, we ONLY support SOFT as a resource for those with trisomy conditions. There is another organization out there that is much more negative. If you feel led to support an organization, please, please, PLEASE ask someone before throwing your money at what seems to be a worthy cause but maybe isn't really what it seems to be.



Back to the appointment: We answered lots of questions, reviewed Verity's history, and talked about possible resources for us within the Children's Hospital network, some of which may be helpful but others maybe not as much because we are already getting great care in our more local area. The one piece of info that I think can help us tremendously is knowing about a couple of other ways to know for sure what Verity's caloric needs are--we can't seem to get her total intake up to the volume that the dietitian and GI doc would like to see, and I can't help but wonder if she really doesn't NEED that much. Clearly she is gaining weight, and she looks so incredibly healthy! (Praise God for that!)

We don't need to have a return visit for another year. Dr. L said that mostly he would like to check in to make sure that we can have the most up-to-date research and information and discuss Verity in particular and see what she might need. It was very refreshing to have such a perspective from someone in this field, as I have heard awful stories from uninformed doctors who make outdated assumptions. We are grateful that the many caregivers in Verity's life are so supportive and either already knowledgeable or else very willing to receive new information.

Thursday, January 18, 2018

Another Transition

On Monday we received some news that has made my heart sad all week. A few months ago we learned that we were eligible to receive nursing care, and the process, once begun, went very quickly. Before we knew it, we had settled into a new routine that included Margie, our full-time nurse. Any doubts or concerns I had about this transition melted away, and before long, Margie felt like part of our family. She has utterly fallen in love with Verity and cares for her so tenderly.

And so it broke my heart when she told us on Monday that she had regretfully given her two-weeks' notice to the nursing agency. A work-from-home job that she had applied for before she even met us has come through for her, and in her words, "at her age" she feels this is a better work scenario for her for the long-term. I can tell she is heartsick about it, which only makes me feel even sadder. It's amazing how three short months could so completely change us all. Though I haven't really ever been able to nap as we half-joked about, it has been such a blessing to have consistent care for Verity, allowing me to focus more on homeschooling and mothering my other children. Having Margie attend various doctor's appointments and keep up with Verity's therapeutic exercises at home has been an extra bonus.

The nursing agency is setting up a meeting for us in a few days with a temporary nurse who is only available for 2 weeks but who can hopefully help fill in the gap while they find a more permanent nurse who will be a good fit. I'm almost sick about it--there are so many little things Margie just KNOWS and takes care of...the thought of "training" one person only to lose her and then "train" another person is exhausting and overwhelming. Meanwhile, I have heard horror stories from other Trisomy mamas of their nursing experiences, and I am still amazed that we had such "good luck" with our first experience! I know it was God's hand of direction, but still...other families are praying, too! Why we should have such a fabulous nurse our first time around and others are having difficulties is a mystery...and though I'm not superstitious, there is a sense of dread that THIS TIME things won't turn out as well. I need to keep praying and trusting, I know. God knew about this transition long before we did; He brought us Margie, and He can bring us another wonderful person whom we can love and who will love our Verity.



Tuesday, January 9, 2018

Pulmonology

Today, a visit to the newest member of Verity's Village: Dr. Tina, our pulmonologist. After chatting with other Trisomy moms, I am kind of amazed that we haven't made it into the Breathing Institute before now, especially since we already did a sleep study! I guess typically those are ordered and evaluated by a pulmonologist, but anyway, the important thing is we had a study AND that today we had the opportunity to speak with another specialist. Even though Verity has had oxygen at night, we have not noticed ANY improvement in her sleep patterns, and if anything, it has been even more difficult because she hates the nasal cannula!

Here are the notes from today's visit...but first, the exciting news: Verity is ALMOST to 13 pounds! Her weight today was 12lb, 15.4oz, a nearly 10-ounce gain since December 19 when we discovered she was losing weight. So, the continuous feed is working! (She has had a few vomiting episodes, but not nearly the volume as before--we can tell she still suffers from reflux, but at least she is keeping most of her food down.)

Dr. Tina would like Verity to go back to the sleep clinic, this time with the intention of looking at CPAP/BiPAP. She thinks we can do better with having Verity do some desensitization with a mask prior to going in, and then having the specialists adjust settings to see what works best for Verity. My only fear with all of this is...how will Verity suck on her pacifier with a mask?! LOL But hopefully if she is able to breathe well, she can sleep deeply and not wake every few minutes wanting her pacifier...?

Because Verity has not had any respiratory infections or pneumonia, Dr. Tina doesn't feel she needs a bronchoscopy at this time, something that most Trisomy 18 kiddos end up having (this is a test that requires sedation). I was reluctant to push for one just for the sake of having one--I really like this doctor and trust her judgment.

Finally, she is putting in a request for us to get another pulse-oximeter, which we haven't had since we turned ours in when we left Omaha. Our ENT didn't seem to think we needed one, even though Verity's sleep study showed her sats went as low as 74%!! So, I will be glad to have one so we can monitor her more regularly.

Thursday, January 4, 2018

GI and Urology Test Updates

My poor baby is crying...so this will be as quick as I can make it.

The upper GI and SBFT showed that Verity's anatomy looks just fine, but stuff moves slowly through her system. Not surprising. Poor baby--that was a rough day, with them having to give her barium multiple times because she kept vomiting it out.

The good news is that she is doing very well with the 24-hour continuous feed. We are currently at 26ml/hour during the day and a bit lower at night (because she did struggle with reflux recently and we are being cautious). We are to increase by 1ml/hr every 2-3 days until we get to 30ml/hr, and then after she is stable with that amount, we will work on cutting the time down while maintaining the volume so that she can have some tube-free play time.

At the urology appointment today (which was scheduled because of her two UTIs in the fall), Verity weighed in at 12 pounds, 12.8 ounces! She was down to 12 pounds, 5.9 ounces when we last saw the GI on December 19.

Today was a hard day. Ted took the day off because the tests were up north, and we decided to have him take Verity with our nurse. I'm thankful he was able to do that--it sounds like it was an absolutely awful time. :-( The renal ultrasound went well. The VCUG got off to a rough start since they had to cath her FOUR TIMES, finally calling the urologist himself to do it. Grrrrrr.

The scan showed that she does have some renal reflux; the urologist called it a 3 out of 5 and at this point only wants to follow up with another ultrasound in 3 months unless she gets another UTI in the meantime.

As I said, it was a rough day, and there was much screaming, crying, vomiting (from the screaming and crying), and more screaming and crying. She is finally pretty quiet--she must be exhausted, poor dear. I know it will be painful when she urinates the next few times, so prayers for quick healing would be appreciated.

More thoughts later when I'm not so tired...


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.

UPDATE: 
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

G.I. FAQs

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 areas...it 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 time...now 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.