The Good, the Bad, and the Ugly

Many good things are happening in Verity's little corner of the world! Let's celebrate!

PRESCHOOL! Verity gets to ride the bus Monday - Thursday and join her little classmates for morning preschool. We are so thankful she can do this in person, as we have seen good things happening for her development. She does get tuckered out and once even fell asleep in class, ha! But the experiences she is having and interaction with her teachers and classmates are all having such a positive effect on our girl. We are grateful for our nurses who accompany her there and back and give us great reports and photos!! 

CRAWLER--after sitting in the NuMotion office for NINE MONTHS due to insurance issues (hmm, enough time to grow a baby), a beautiful Creepster Crawler is finally OURS! We use it to help Verity do some weight bearing in the quad position. She has gone from utter dislike to tolerating and even seeming to "enjoy" (that may be a little strong) the device. The ultimate goal, of course, is to help her understand that SHE CAN move herself! We are still working on sitting up on our own as well. I don't yet have a picture of her in the crawler, but here's a photo of her sitting without our support doing one of her favorite things: playing her little piano! We do have to watch her carefully, as she can hurl herself out of the chair unexpectedly, but it's so great to see her making these strides. 

Other developmental things:

• Blowing bubbles...spit bubbles, that is!
• Smiling and laughing spontaneously
• Interacting with her toys on her own
• Responding to her siblings and enjoying play time
• Surpassing 24 pounds! She's still teeny, but man, is she getting SOLID! She's so strong and healthy!
• Using her core more and more...she's close to sitting up on her own and COULD if she wanted to!

Unfortunately, we must deal with some bad things as well...mostly recurring UTIs for our poor girl this year. We are treating the 6th one! Different bacteria have grown out at different times. We've done some testing (VCUG and abdominal x-rays, plus her regular renal ultrasound). She still has kidney reflux on her right side, but nothing that suggests we need to do any kind of surgery or procedure. After this current round of antibiotics, she will do 2 months of prophylactics (low dose of preventative antibiotics). And I plan to get pretty aggressive with our home treatment/preventative plans as well.

And the ugly?

Well, I probably don't have to tell you the ugly part. Our nation is deeply divided. I don't even recognize this country anymore. Truthfully, I've blocked out many of the things that rile me up, choosing to focus on what needs my immediate time and attention. That doesn't mean I don't pray desperately for our nation, for the leaders current and future, and for the citizens of this country. 

It DOES mean I soak up all I can from life with Verity...

All the snuggles. (She's often rather affectionate!! We take it in when we can, because it doesn't last long!)

All the love.

All the laughter.

All the sweet innocence of a precious girl who is sheltered from the brutal realities of a sinful, fallen world.

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...

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!

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??!