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.

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.

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.

Meanwhile...it 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!

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 probe...no 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 night...my 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!

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 news...is 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 time...it 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.

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 beforehand...so 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!!!

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 early...it 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!!

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 enrolled...in 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??!