Feeding Tube Awareness Week

It's that time again: Feeding Tube Awareness Week! If you know or care for someone who has an NG tube, OG tube, G-tube, J-tube, G-J tube, or any other combination of letters + tube, chances are you are already well acquainted with the Tubie Olympics! Some of the highlighted events include:

• The Emergency Button Change: how quickly can you reinsert a button after it has come out of your child's body? OR how quickly can you insert a new one upon discovering the balloon has sprung a leak?! Hurry! You have a short window of time before you have to pack everything and everyone up and get to the emergency room! But no worries: if you aren't quick enough, there's always the surgical option!
• Speed Clamping/Unclamping: When giving meds or water flushes, don't forget to clamp the extension tube BEFORE inserting that syringe into the med port! Otherwise you may find yourself entering an unexpected water event! Clamp, insert syringe, unclamp, push the water or meds, clamp, remove syringe and replace the cap. Even experienced parents sometimes forget to clamp/unclamp at the right moment. But no worries: a well-timed spray of formula, meds, or water is a fabulous reminder to do it right the next time! A secondary event involves remembering to unclamp the extension tube prior to starting the feeding pump. (See notes on "Silencing the Blasted Feeding Pump Alarm.")
• Feeding the Bed (or the Floor or the Car Seat or...): This event will have you springing into action to stop the feeding pump before any more food ends up, well, everywhere besides the subject's stomach. Maybe the tubing slipped out of the feeding port. Maybe the subject thinks it's hilarious to pull on the tubing or rolled over it in the case of an overnight feeding. (If this is the case, be prepared for an Emergency Button Change BEFORE dealing with the mess on the bedding.) Mental acuity is key as you assess the most important action to take first and then attempt to calculate how much food has, in fact, NOT been included in this particular feeding session.
• Silencing the Blasted Feeding Pump Alarm: Whether drawing attention in the middle of a church service or waking the dead in the middle of the night, this event pairs the need for quick reflexes with the inescapable desire to JUST MAKE THE NOISE STOP. Perhaps the amount of food in the bag was miscalculated, or perhaps the feeding bag got tipped so that air bubbles are in the line. Or maybe the alarm is going off simply because you forgot to unclamp the line to allow the food to flow through the line. Whatever the reason, the feeding pump is letting you know that there is either NO FOOD or NO FLOW, and you are responsible to fix the problem. Add more food or formula; prime the line to remove the air bubbles; and restart the pump...AFTER all ports are closed off and you have unclamped the line. 

I hope you've enjoyed this quick rundown of the Tubie Olympics! In all seriousness, we are so grateful for the technology that allows us to feed our Verity--without her G-tube, she would not be able to sustain herself. We are grateful for the supply company that sends us organic, whole-food formula, feeding bags, extension tubes, G-button kits, syringes, and any other supplies needed to feed our special girl.

What events are YOU an expert in?! What events did I leave out?!

Current Status (Quo)

I can't believe it's been 2 months since I wrote a blog post! Do you know what that means?! We've been experiencing some kind of NORMAL! That is to say...we've been living the busy life with our kids, and Verity has been growing and developing and thriving in the midst of it all.

So with a bit of time and a quiet house, I decided an update was way past due, especially since we do have some things to report that we haven't detailed on Verity's Voice (our Facebook page).

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First of all, I am pleased to report that Verity's feeding regimen continues to improve as we work toward a more "normal" feeding routine. We are up to 3 bolus feedings now, with only 14 hours of slow continuous feeding, running 4pm to 7am. This means Verity has quite a bit more TUBE-FREE time during which she can practice her moving and grooving! It is SO nice to be able to hold her, carry her, and help her with her physical skills when she doesn't have her "leash" on! While she still isn't eating by mouth, we are doing more and more tasting and doing so while she is having her bolus feeds so that she can begin associating food with a full (or filling) tummy.

So her feeding schedule looks like this:

• 0700: Turn off the feeding pump (ending the continuous feeding)
• 0800: Begin bolus #1: 75ml over a 30-minute period (rate of 150ml/hr)
• 1100: Begin bolus #2: 75ml over a 30-minute period (rate of 150ml/hr)
• 1400: Begin bolus #3: 75ml currently at a rate of 85ml/hr, with rate increases of 5ml/hr every 3 days.
• 1600: Begin continuous feeding: 34ml/hr for the next 14 hours.

Typically during the first 2 bolus feeds, Verity will sit upright at the table in her chair. She has had tastes of applesauce and sweet potatoes by spoon (or on her pacifier), and we also frequently give her a food "stick" to hold and explore with her mouth. She has tried carrot and celery sticks, cucumbers, and apple slices so far. One of her day nurses wants to try a big pretzel rod! Verity's interest level varies from day to day, but I'm in no hurry. She's GROWING!

And speaking of which, I don't have exact measurements--we should get some this week since we have a couple of appointments--but last time we weighed her she was about 16lbs, 12oz, although that was with clothes on. STILL...she had dropped under 16 pounds awhile back when she was fighting off a sickness, so this is encouraging!!

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Last week we had a 6-month check-up with the orthopedic doctor. The good news: Verity's hip X-ray shows all is continuing to look good. The doctor says she should have yearly X-rays as long as she is growing.

The bad news: Verity's Achilles tendons have tightened considerably, and the tendons in her groin are likewise still very, very tight despite the stretching exercises we do faithfully and frequently. So, a November 19 surgery date is scheduled for a tenotomy to release those tendons. After the brief procedure (which will require sedation), Verity will get full-leg casts with a brace between her legs. She will need to wear those for 3-4 weeks, and then we will resume the boots and bar (which we have discontinued at this time).

So...if you think of us during Thanksgiving week, please pray that Verity's surgery goes uneventfully and that she has minimal pain and recovers quickly. We are already dreading the lack of sleep that will undoubtedly accompany this process!

Below you can see her left foot, which is "rocker bottomed," a common feature in Trisomy 18 kiddos. Until our appointment last week, I had not heard a doctor describe her foot in this way. I assumed it looked different from the other foot simply because they were both severely clubbed and had to go through the casting process (a year and a half ago!). You can also see the back of the heel, which will not flex any more than this even if we are trying to help her do so. The right heel is much more affected than the left...we have not been able to get that foot flat onto her boots for some time now, so I was not terribly surprised when I heard the doctor's recommendations.

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In other very quick news:

• Verity's sleep patterns have improved DRASTICALLY! She usually will take a 2 or even 3-hour nap (although sometimes only 45 minutes or an hour) in the afternoon. If she gets a good nap, she typically does have a pretty decent night of sleep. She is even sleeping all the way through the night on occasion!
• I have successfully completed CNA training and passed the Colorado state exam! This involved 4 weeks of night classes and clinical experience, followed by a full day of written and skills testing. I am officially a certified nurse aid! What does this mean? Well...
• In the state of Colorado, family members are allowed to receive payment to care for their disabled loved one. There is an assessment tool that tells how many hours per day one can qualify for, and when a caregiver is certified (or licensed or registered, depending on what level of care), he or she can be hired through a home health agency. I work through the same agency that provides our skilled nursing care, and I'm quite pleased with the training and preparation I received through this whole process. I chart for 4 hours a day, and it amazes me that we are blessed to receive financial help for the tasks I was already doing with Verity. What a GIFT! The Lord knew we needed to be in this state for multiple reasons, and this is just one way He has tenderly shown His provision for us. Jehovah-Jireh, indeed. 
• I will detail later the results of the sleep study we had at the end of September, as I still need to meet with the ENT and later on the sleep clinic doctor.
• Tomorrow we have a liver scan and kidney ultrasound--we do this every 3 months, although this will be Verity's first liver scan. Our T18 kiddos have a higher chance of cancer/tumors, so it's proactive vigilance. 

Recent Appointments

Life with Verity is never dull, that's for sure! We have wrapped up another month of appointments, and here are the highlights.

From the GI follow-up:

• Verity is 15 pounds, 1 ounce! I was hoping for 15 pounds by her 15-month birthday, and she reached that! (May 28 was her 15-month bday!)
• We are back to giving 15ml prune juice twice a day to ease constipation. (We had stopped when vomiting was prevalent after giving it.)
• We are continuing to give her Prevacid twice a day for reflux, not wanting to change that AND her feeding regimen just yet, but hopefully later in the summer we will drop to once a day and see how she does.
• We have begun a S-L-O-W transition to one bolus feeding per day as follows:
• At 11:30am we stop the feeding pump.
• At 12:30pm we begin the bolus feeding.
• The first few days we gave 35ml over a 30-minute period.
• When we tried to bump up to 40ml, she vomited significantly, so we backed down to the 35ml for a few more days.
• Today we gave 40ml but did not compress it to a 30-minute period, instead letting it run at the same rate (70ml/hr), and she did great!
• Every 2-5 days we will adjust the volume OR the rate, working them up slowly to the goal of tolerating 60ml over a 30-40-minute period.
• At 2:30pm we resume the continuous feed (30ml/hour for the next 21 hours).

Overall it is clear Verity is growing and thriving, though we still deal with vomit almost daily and constipation (relieved instantly when we give her a liquid suppository--she just needs help getting it started). She is much sturdier, less floppy, with greater head and even trunk control, but still not able to sit on her own yet.

From the Sleep Clinic Meeting:

• A repeat sleep study has been ordered since so much has changed since our last one in November. (Earliest opening = end of September, but we are on a waiting list.)
• The doctor recommended establishing care with a neurologist, which is something I agree with--she has never been seen by one, but Trisomy 18 kiddos often deal with seizures, and I confess this is an area in which I have much fear over what the future may hold for Verity.
• The doctor also ordered a check of Verity's thyroid levels, which turned out to be normal.
• We discussed the fact that studies show propping kids up (laying them on an incline) during sleep may not actually help with reflux and can worsen the airflow obstruction. We have laid Verity flat ever since, and lo and behold, she has slept better overall!
• She noted Verity's high arched palate and said we may want to address this in the future. She gave me info for a dentist who specializes in this.

From the Surgical Consult:

• Verity's umbilical hernia does not require surgery now.
• If it has not resolved by age 4, surgery may be done to correct it.
• No concerns here!

Whew! Coming up next week is an evaluation with a speech therapist and a check-in with the audiologist to see how things are coming with her BAHA (which she is wearing anywhere from 3-10 hours a day in various stints).

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...

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.

G-Tube Surgery = Success

Monday was a big day for Miss Verity! If she were able to retain and speak about the memories of her experiences during our hospital stay, she would probably first mention how incredibly hungry she was for most of that time, lol. We had to end her feedings by 8am, with surgery prep beginning at noon and the surgery scheduled for 2pm. Unfortunately, the previous surgery ran late, so Verity's didn't begin until 3:00.

The nurses adored and fussed over Verity!

Waiting comfortably in Daddy's arms.

Ted and I waited about an hour while Verity was in the operating room. I confess I was a bit anxious; my stomach was in knots all throughout the morning. It was hard having our baby go into surgery, knowing she would be under anesthesia. Thank the Lord, all went well, and after it was all over, a nurse took me back to the recovery area, where I got to hold Verity and comfort her. I was so thrilled to see how she clearly responded to having Mommy hold her--there was a noticeable difference compared to when the nurse was trying to calm her! I loved that she relaxed in my arms and became more peaceful.

We were only in this "holding area" about 15 minutes, and then Ted joined us and we moved to our overnight room. It was nearly dinnertime by this point, so we got Verity settled and then parted ways: Ted to go home to take care of the rest of the family (who had been holding their own all day, bless them!) and I to the hospital cafeteria to grab a soup and salad to take back up to our room.

Verity was not very happy when I returned and took over from the nurse! But rocking and singing to her helped. I ate my dinner very slowly, one-handed, over the course of an hour and a half before she calmed down a bit. She had to wait 6 hours before feeding, and then when it did start, it was to be the slow, continuous feeding that we typically do at nighttime. That seemed to make sense and lined up with our usual schedule; we began the feed at 9pm, and I pumped and hoped to get a bit of sleep.

HA! By midnight it was apparent that Verity was not interested in sleep whatsoever. She seemed to be in considerable pain, at least according to her screams. (There is nothing wrong with her lungs, that's for sure...) We ended up giving her some more pain medication, but she continued to be unhappy. The nurses were tag teaming with me, trying to help soothe her, but nothing was helping. They wondered if her tummy was not doing well and stopped the feeding, restarting the IV instead.

The night was a blur...there would be times when she would seem to settle, just enough for me to crawl onto the sloped couch, spread a blanket over myself, close my eyes, and...jerk back to reality when she screamed again. I think they did restart her feed at one point only to stop it again. They found an infant swing to bring in when I mentioned that she usually sleeps in our swing at night. That helped for a bit as well. But nothing helped longer than a few minutes at a time.

I was sure that Verity just needed a good meal! Of course I don't doubt she was experiencing pain as well, but by 5am, when she was just plain mad, I begged the nurses to PLEASE resume her feed. Imagine if you hadn't eaten for 13 hours, and then when you were finally allowed to eat, you were given one bite of bread every 10 minutes. Would that help you?! I think not! That must be similar to how Verity was feeling! Girlfriend likes her food!!

After going up the chain of command, we got the approval to resume the feeding and stop the IV. (You may hear my eyeballs rolling here...why would a mama not be allowed to feed her baby?! Yes, I understand the surgery and all...but really!) So feeding resumed...and she fell asleep. Hooray! At 6:10am the residents barged in to wake me up and ask me questions. Having just gotten about 20 minutes of sleep (double the amount I had gotten the rest of the night), I was rather disgruntled, and even more so when I realized they had awakened Verity, too. UGH. I held her in the rocking chair and we both dozed off and on until they came an hour later to stop the continuous feed.

But! Proving my point, at 8:00 when we started her full feeding (60ml over a half hour), oh! Was she ever so much more content! She did continue to make little shuddering sighs/moans now and then, similar to the nights after she got new casts on her feet/legs. But it was SO much better. Her little voice was hoarse from all the screaming during the night! By 9am she was resting well enough that I felt comfortable telling the nurse that I was going to go grab breakfast.

In the cafeteria I was able to meet up with another T18 mama! Paige and I had connected via Facebook soon after our diagnosis, and I've followed Addilyn's journey online as well. It was nice to meet in person and chat awhile!

Back in our room, I prepped for Verity's 11:00 feeding, during which I received the G-tube training needed to bring our girl back home and care for her ourselves. I posted this video on Verity's Facebook page with permission from the mama who made it, so if you're curious about what exactly a G-tube is, what it looks like, and how it works, take 6 minutes and check it out! I watched it before the consultation with the surgeon and then showed it to Ted the day of Verity's surgery. It's interesting and was super helpful for me in mentally getting ready for this change.

This is how I found her after I got back from breakfast;
I don't think she missed me a bit!

Ted arrived after his morning work meeting, so together we went over the instructions for using the G-tube for both feedings and medications, cleaning it, venting it (when her tummy needs to release some gas), and general site care. I was just so eager to leave the hospital and get home to NAP!

Now we are at the end of the week. I am happy to say the G-tube has not been yanked out, lol, and Verity's pain seems greatly subsided. I'm still cautious with holding her and don't even like to put her up on my shoulder to burp in case it's still tender. We give her an extra layer of cloth over the belly area when buckling her in her car seat as well. At the 2-month check-up yesterday, our pediatrician said the site looks good. There is some redness but not bad, and some inflammation is to be expected.

We continue to work on oral feeding as time and interest allow, but in the meantime, what a relief to finally be rid of the nasal-gastric tube and see Verity's sweet little face!

Swallow Study

Thursday was Verity's last appointment for the week, a swallow study to evaluate whether she is ready for/capable of eating orally. She wasn't allowed to eat anything for 3 hours beforehand, so we adjusted her feeding schedule accordingly. Since the appointment was in the morning, she was still pretty sleepy (she does her best sleeping after we wake up for the day!!). In fact, it was kind of hard to get her to wake up enough to feed well enough for the doctor and therapists to see much!

We started by using a tiny syringe to squirt a special liquid in her mouth with barium (I think?!) to make it show up on the X-ray. Once they were able to view her swallowing from the contents of the syringe, they moved to a bottle. I think she would have done better with this if she had been more awake, but at least the main encouragement was certain: there is nothing structurally that would prevent Verity from having oral feeds. This is definitely good news and encourages us to take the next steps and work hard to make sure she doesn't end up having oral aversions, as many Trisomy kiddos experience.

Can you see Verity's feeding tube?!
Her nose is pointing toward the left.

So, our plan for now is to start feeding her with the little syringe (1ml) about 10 minutes before normal feeding time. We will give her however much she will take until feeding time, and then do the rest via her feeding pump (currently using the NG, or tube through her nose, but planning to move to a G-tube which will feed the stomach directly). So far 3ml seems to be about her limit, but the good news is that she really enjoys it, though she has started to sputter a bit and not do quite as well toward the end, so it has been pretty clear when we need to move on. The nice thing about this transitional step is that we can involve the older kids, too!

I am also encouraged to continue attempts at breastfeeding, although I'm not terribly optimistic about this as she hasn't latched at all since before we left the hospital. We also have a preemie nipple we can use when we think she might be ready to try a bottle. She continues to suck well on her pacifier (though we have to hold it in her mouth).

I confess I am excited to get rid of the feeding tube; it is awkward and of course always keeps us on our toes trying to make sure it doesn't get dislodged. But I am equally excited about the opportunity to have some normalcy with feeding times! As Verity grows stronger and more alert, we look forward to feeding her in a manner more similar to her older siblings.

Going Rogue

About a week and a half ago, after asking for input from other Trisomy parents and having a doctor also weigh in with an opinion, we decided to "go rogue" and try an experiment for at least a week. I wanted to stop giving Verity the formula fortification that we've been adding to my breast milk. (Fortifying breast milk is typical protocol for smaller babes like our T18 girl so they can get extra calories to help them grow.) From arching her back to squirming and screaming and not pooping for several days in a row (and then it being a BIG ORDEAL when she finally did have a blowout), our poor Verity was clearly having tummy pains. I figured it would be worth investigating.

So starting Thursday evening, April 6, Verity began breast milk-only feeds. After 48 hours, we already were seeing a big difference. She was much more relaxed, and she hadn't really had any screaming fits--not like we had gotten used to dealing with. As time went on, another happy observation: she was no longer experiencing reflux! Before this change, massive reflux (milk spewing out her nose and mouth at the same time) was a daily occurrence, soaking everything and causing alarm because of the difficulty she would have breathing. It happened anywhere between 1-3 times a day. We utilized the suction machine almost daily, as the bulb syringe was not always capable of keeping up with the outflow.

Additionally, nights after dropping formula became--overall--more peaceful. While Verity wasn't exactly a great sleeper after the change, at least we weren't dealing with her painful screaming fits; the times she woke us up were more due to the discomfort she was likely experiencing because of her new castings or simply because she still has her days and nights mixed up. She loves to be held...which is all fine and good when it's 3pm instead of 3am!! Last night we had a happy surprise: Verity slept from about 8:45pm until after 5am! Was that ever a needed respite for her exhausted parents! We aren't sure if it's because we took her outside in the evening sunlight and tried our darnedest to keep her awake before starting her nighttime feed or whether it's because we diffused the Peace & Calming oil beside her swing during the night...but whatever the cause...it worked, and we shall try our best to duplicate it tonight, ha!

Anyway. Today was our follow-up with the GI doctor. Verity had been doing so well that I didn't intend to start adding formula to my milk again, but I did feel that I needed to be honest with him, especially since we were also consulting with a dietitian at today's appointment. Thankfully we had a track record of weight gain; I've been having Verity weighed between her castings, and she did gain weight despite not having the formula! Not a huge gain--from 6lbs, 13oz to 7lbs, 1/2oz. But still. She is trending upward, and equally important, she is a much happier, more peaceful baby! The doctor was pleased with how Verity looks; though he admitted that he had not looked at Trisomy 18 growth charts, he did say her growth is all proportionate. And he said he would look up those T18 growth charts!

The doctor and dietitian agreed that I can continue with breast milk only, but we are increasing her volume, which is something I was thinking Verity is ready for anyway, as she fairly consistently wakes before her scheduled feeding time. She and I also had a nice recreational nursing session late in the night a couple of nights ago, the first "success" I've had with that in a long while. We had a swallow study this coming Thursday and hope to begin transitioning to bottles (hopefully nursing at some point?), but it will likely be a fairly slow transition. Because of that, we are working on getting a referral for a G-tube surgery so that we can at least get rid of that HOSE, ahem, feeding tube in her little nose. :-)

So, new numbers: increasing from 400ml/day to 500ml/day, with 5 daytime feedings at 60ml and a 20ml/hr continuous feed 10 hours at night. We shall see how this goes!

Here is Verity, completely unconcerned in the GI waiting area!

Today's News

Today's GI appointment (at a location almost an hour's drive from our house) answered a lot of questions...and gave us two more appointments to schedule. Sigh. I'm exhausted already, and we still have one more appointment for Verity and a three-day speech and debate tournament for our oldest two this week.

Nutshell:

• Loved the GI doctor. He said his family homeschooled awhile using A Beka curriculum (not our curriculum, but showed us he's a kindred spirit!).
• Tonight will be our first try with continuous feeding using the feeding pump. HOORAY for not setting my alarm for 11pm and 2am!! (Or just 2am when I don't make it to bed before 11pm. Ted has done the 5am feedings.) Instead of 50ml every 3 hours, Verity will get 15ml an hour over a 10-hour period. I'm sure there will be wakings, but still...we are hoping and praying desperately that we can get some decent rest.
• The doctor ordered a swallow study--it is not something he could do right then and there at his location. So, it's good to know it's in the works, although we likely won't get in until toward the end of April. After that is conducted, we hope to get the green light to try bottle feeding. I continue to attempt nursing, but honestly, the times I am free to try are extremely limited; Verity needs to be awake and calm, and I need to have my hands free without other people pulling at me. The stars do not align all that often...I do want to try, but the fact that she has not latched at all since about a week before we left the hospital is rather discouraging...but I am totally okay with the thought of bottle feeding, and she does take a pacifier. 
• The feeding tube...that hated, 30-day feeding tube. I was SO hoping that we'd be able to switch it out today for the smaller ones and that we'd learn how to put them in ourselves and not live in paranoia that this unwieldy tube will come out and send us back to the ER. Unfortunately, this is, apparently, something that the children's home health provider network was supposed to set up for us when we received the feeding tube to begin with. So...I get to make more phone calls. I'm hoping they will send a nurse to our house with the tubes for the training...but if not, hey, I'll be at the children's hospital twice a week at a minimum this month. 
• We will follow up with this GI doctor in two weeks, and at that appointment he will have a dietitian along as well to evaluate Verity's levels and decide whether she is ready to increase her feeds at that time. Meanwhile, I've been instructed to ask to get an accurate weight measurement BEFORE the next set of casts are placed, ha!

In other news, I've learned it's entirely possible for a full-time pumping mom to deal with blocked milk ducts and possible mastitis. Yay, me. Actually, yay for my essential oils for already giving me relief. I'm hopeful that tomorrow will be a better day. At least I don't have to go anywhere before dinner time...

Rooming In

Today has been a practice-taking-care-of-Verity day without much help or intervention from the nurses (who are certainly available if we need anything). We chose to stay in our current room--when I learned that I didn't HAVE to move across the hall, well, that was a no-brainer. Why make more work for ourselves (not to mention the cleaning staff)?! We've been doing quite well all day! Officially we only needed to be on our own for 8 hours, but since the nurses aren't allowed to use our home pump, I'll be taking the night shift as well, so I will really get a feel for what it will be like to be on full-time Verity duty!

Verity's hearing screening was early this morning. It wasn't terribly conclusive; they will give us a "referral," which basically means their equipment wasn't able to determine that her hearing is "normal." This isn't too surprising; her ear canals are pretty tiny still. She will be screened again sometime in the next month or two, and if those results indicate any issues, we'll get a referral right then and there and go directly to an appointment with a specialist.

Meanwhile, the doctor checked in on us to see if we felt comfortable with a discharge tomorrow morning, to which we gave a resounding YES! Dr. Doom-and-Gloom (with whom I had an unfortunate consultation in November) will be on duty this weekend...I don't particularly want to stay in the NICU long enough to have to deal with him. (Although perhaps it would be good for him to meet Verity.) God in His sovereignty directed Verity's arrival to happen a couple of days after Dr. D&G completed his two-week rotation in the NICU; I am so incredibly thankful for Dr. A, who is so personable and compassionate and was the perfect fit for supporting our family and Verity. I wish she could be the one here to discharge us, but Dr. F is a nice enough doctor.

Anyway. Back to our "rooming in" experience. We totally have got this feeding thing DOWN! You can see proof of this in Verity's perfectly content demeanor:

She has been a dream baby! She has a bit of wake time around her feeds/diaper changes and has slept great. She fusses a bit but not much, and I've been able to do some "recreational nursing" times more so today than over the last few days, as she was extremely sleepy. Maybe in a later post I'll feature the home feeding pump for any inquiring minds who want to know, but I'm trying to keep this fairly brief!

Other than the feeding pump, we've also been using our pulse oximeter to monitor Verity's heart rate and oxygen saturations. Let me tell you, we will NOT be able to sleep through THAT alarm, lol. She's had just a few dips into the upper 80s but then it has climbed back up to the 90s very quickly, so thankfully that loud alarm only beeps 2-3 times. We have the electric suction machine on hand but haven't had to do anything beyond using a bulb syringe to get some boogers out after a few sneezes. :-) We can use the pulse oximeter as often as we like--definitely while we are sleeping so that we CAN sleep, and likely during the day if we are distracted with schooling or other activities while Verity naps nearby. But we don't HAVE to have it on all the time, and I very much am looking forward to holding our baby and allowing others to hold her without worrying about all these CORDS. Now...if we can just figure out how to deal with that feeding tube! I may end up taping it to her back in between feedings...any suggestions from folks who have done this before?!

I've heard good reports from the speech tournament our oldest two kids participated in this week. They drove home this evening with their grandma, who took over chaperone duty, allowing Ted to be home with the other 6 kids, driving back and forth to the hospital daily. Arden and Kenna watched the younger set so Ted could come to the hospital for the afternoon and be part of this rooming in experience. We are all incredibly excited that we will be reunited at HOME tomorrow!!! Oh, happy, happy day!!

The "H" Word

Days 10 and 11
Aside from meeting with the cardiologists yesterday morning, the big news was that we heard the "H" word--HOME. Dr. A had a plan for getting us HOME early next week! I am combining these two days' updates because much of today's activity came out of discussions we had yesterday.

So, the doctor's goals and ours are the same: to get us home soon, but more importantly, to get us home safely. I so appreciate how clearly everyone is rooting for Verity to thrive and are working with her best interests in mind. This is all too often NOT the case for Trisomy families, and sadly many of them don't know differently and follow recommendations based on inaccurate information. Dr. A's two biggest things were making sure Verity could breathe well on her own (check!) plus making sure we had a plan of action for keeping her fed and growing.

As for that first item, we have been thrilled overall with Verity's numbers. While there have been alarms ringing with elevated heart rate and lower oxygen sats from time to time, they are not concerning and easily explained: she's mad, she's having a small bit of reflux, the monitors got kicked off, etc. The cardiologists as well as the NICU doctor cannot detect any heart murmur, and what we've seen over the past week and a half or so is a good indication of Verity's "normal," and nothing about it is concerning. There are no signs of apnea, for example, a very common Trisomy 18 problem. So while I have tended to worry over any change in status quo, talking with various doctors over the last couple of days has given me a lot more freedom to just RELAX. Verity is doing great!

As for the second going-home-milestone, we were optimistic in thinking that a 30-day feeding tube placement would get us home early next week, probably Tuesday, and we'd be able to work on nursing at our leisure while making sure Verity gets the nutrition she needs to grow. So, today revolved around feeding tube efforts. The nurses placed it early this morning; an X-ray was taken close to lunch time to make sure the end of it was in the appropriate place (it wasn't and needed to be drawn back 2cm); and a doctor arrived close to dinner time to put the bridle on. The bridle would have essentially tied it off underneath her nose, securing it so that it wouldn't be able to be yanked out. Unfortunately, though they were using the smallest/thinnest option available, Verity's nose is still too small for this to work for us.

This is a disappointing setback to be sure. However, in the scheme of things, it is a setback that we can deal with, even if we don't like our alternatives. A G-button is not really a good option at this point; it must be inserted via surgery, and they prefer not to do surgery on one as small as Verity. It may very well be ideal in the future, but now is not the right time. The only other alternative seems to be that Ted and I will have to learn how to place the tubes that she has been using here in the NICU. While I'm less than thrilled about this (I nearly passed out watching the nurse insert it last week and left to go shower when they were putting in the larger one today), I know that we will do what needs to be done, and after awhile it won't seem like a big deal. But the hassle, not to mention the risk of it being pulled out (by Verity or a curious sibling), just makes me heave a sigh...these are the things no one signs up for...you just do what you have to do. Anyway...all of this could mean that we don't actually get to go home on Tuesday; we just kind of have to wait and see.

In happier news, and going along with the feeding report, a speech therapist came in this morning and sat with me during a nursing attempt. Thankfully it was a fairly good attempt! Verity latched and sucked and swallowed multiple times. This all takes a lot of effort for her still, and we are nowhere close to being able to count on nursing as a major means of acquiring calories, but the structure of her mouth plus all the cues she is giving us indicate that she is fully capable of nursing someday, and so this is what we plan to work toward.

And along those lines, I've learned so much from the lactation consultants here! Once again, I'm amazed at how much of a continual learning process this is...my nursing resume continues to grow, lol. We decided today that my supply, while adequate for Verity's needs right now, really isn't where I'd like it to be, and so I have some new tips and tricks to try for gradually increasing it.

We've increased Verity's feeds to 50ml (given over 30 minutes) every 3 hours. They continue to fortify with extra calories, but she's getting breastmilk every time instead of a mix of my milk plus formula. So hooray for that! Though her weight last night had dipped JUST a bit, tonight she was up to 5 pounds, 5.3 ounces, her heaviest weight yet.

We also had a visit from a physical therapist today to initiate conversations about various therapies that will help Verity; we should receive a visit from an occupational therapist soon, but I don't know if it will be tomorrow or after the weekend. Our state of residence has a program called Early Intervention that will allow us to receive home visits from therapists in the area, and once we are in that system, they can hand us off to our next location so we can continue with forward progress. (No word yet on whether I'll be provided with a personal massage therapist, which I desperately need after sleeping under stress on a hospital bed for 11 nights...! Bummer that I had to cancel a scheduled massage appointment because Verity arrived the day before, lol.)

In other NICU news, our doctor received an award from the university (well-deserved, I'm sure! I love her!), and a film crew was here today to follow her around and work on a video. Dr. A asked me if I would be willing for Verity to be one of the patients she would see while on camera, and I told her we would be honored! I got a little emotional when she asked (hormones!) and told her that we had prayed that God would put together just the right team to care for Verity after she arrived, and we were so thankful that God had allowed Dr. A to have her two weeks of rounds at the same time we arrived in the NICU. So, Verity and I had cameo roles in this video! I had to sign a release form and everything, lol. The film crew had no idea about Verity's diagnosis, so I had the opportunity to share a little bit with them and give each of them a Verity card to keep.

Life With Verity: Days 1 - 9

Daily summaries that I've been posting on Facebook...

February 28

Verity Irene is here!!! She's really, truly here!!! Wow, things moved quickly after we had a scare; she was transverse for awhile but finally turned and emerged with some help from a bit of pitocin. She is with her dad and big sis plus our photographer in the NICU on oxygen but doc says she's looking good overall. I'm eagerly awaiting her assessment and the wearing off of my epidural so I can join the crew. I have no specific stats, but it was about 4:10am and as Kenna predicted, she has dark hair. ❤ Praising God I got some precious moments with Verity before her heart rate dropped and they took her from me. I am confident she is in loving, capable hands--God Almighty's, first and foremost, and the wonderful, caring team our Heavenly Father assembled in this time and in this place. Whatever happens in the hours and days to come...I know Jesus has been with us every inch of this journey and will never leave us.

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Day 2 (March 1) 

All positive trends in the NICU! Feedings increased and after a few more the plan is to stop IV feedings and solely use tube (gavage) feedings. They are encouraging me to try nursing at that point, since Verity seems able and willing to suck as evidenced by her responses to the "Momsicles" we have given her. Lots of good cuddle time today with Mom, Dad, Grandma J, and big sisters Charis and Kenna. The rest of the crew will visit tomorrow. Thanks for the prayers!

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Day 3 (March 2)
Mommy is fighting a migraine today and is extra tired, so I'm taking over the NICU update!

My big brothers and sisters came this morning to hold me and get photos taken with me. The nurses kept talking about how amazing my siblings are, and I have to agree--I am one blessed little girl to have such a crew to love and take care of me. I can't wait for everyone to see the pictures, especially the ones of me wearing my little gown from Grandma J while lying on the special blanket my big sister Charis made for me.

All that excitement really wore me out, so I've been taking it easy today. I got some great cuddle time with my Daddy, which was a blessing since he has been running hither and yon and hadn't had as much time to hold me as my mommy. So we had some heart-to-heart time while Mommy moved from her hospital room into mine. I know the fold-out cot won't be as comfortable for her at night, but she's happy she can be with me around the clock.

Mommy got a nap after Daddy left in the afternoon, and then she tried nursing me. I was extra sleepy from all the excitement but happy to nuzzle and taste some milk. I'm getting my food through a tube in my nose, but maybe after awhile I'll get the hang of the nursing thing. Last night's weight check had me at 4 lbs, 14 oz, so they have increased my feedings to 35ml (up from 30). Mommy says pumping is going pretty well and hopes that before long we won't be using formula at all to supplement.

I still have oxygen flowing through a nasal cannula, but I heard the nurse practitioner say that we may not need it for too long. This would be amazing if it turns out that I don't! Most T18 babies need lots of help breathing, especially in early days and months.

All in all, not much has changed over the course of the day, but I am moving to a crib if my vitals look good at the 8pm assessment. This will make it easier for Mommy to pick me up and take care of me, even if I still have quite a few cords to deal with.

Oh, I'm supposed to tell you that I am peeing and pooping just great. In fact, you can ask my daddy about the huge explosion I gave him to celebrate his first Verity diaper change!

Tomorrow Mommy will meet with the genetic doctor to get more details about my heart conditions. She prefers to wait to share more information about that until after she has a better understanding of how my heart looks right now. I know she and Daddy are pretty sad to learn that I do have some heart problems, but I know they understand that God is in control and had a purpose for delaying that information.

Guess what! Mommy thinks I need my own Facebook page so that we can keep people updated more easily! What do you think??! If you like that idea, maybe you can give us some suggestions for what to name the page! We want to join other Trisomy families in sharing our adventures so that people can learn more and be encouraged.

I'm getting fussy now...all this updating is making me cranky. I want Mama to pay attention to me, so I'll quit for now. Sending love to all my adoring fans!! Thank you for your prayers!

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Day 5 (March 4)
Sorry we didn't do a day 4 update; there wasn't much to report as far as Verity's status, but in other news, yesterday she enjoyed a visit from the entire family plus had her first real bath (she was not impressed) and managed to let Mommy get a couple of stretches of decent sleep...which isn't saying much, since the previous night Mom was awake from midnight until 6am! :-O Let's just say Verity lets us know when she is not happy...

So the big news from today is that after lunch, they tried taking Verity off her oxygen because she was looking so good...and SHE'S STILL OFF!! It has been hours and she has had absolutely no issues whatsoever. In fact, I got a two-hour nap during this stint; wasn't sure I'd feel comfortable sleeping but obviously I was exhausted enough to crash, and when I woke to pump she was still as peaceful as could be. I am very encouraged...it's so nice to see her sweet little face!

Now the main thing is figuring out her feeds, assuming she continues to do well without additional oxygen support. She is still getting her feeds through a tube, primarily using my breastmilk with a little fortification. Though we've had some nursing attempts, she has not made any headway in this area, but I'm determined not to stress about it since I had no expectations going into all this.

And an addendum to today’s update:

Oh, my heart! Not only has Miss Verity been off oxygen all day, BUT ALSO she has regained some weight (up to 4lbs 14 oz from 4 lbs 9 oz last night) AND...drum roll, please...

She latched on and sucked during an attempted nursing session!! Granted, she only sucked a few times, but she did latch at least 3 separate times!!! Hope springs eternal. :-) God is good. He would still be good even if Verity weren't overcoming so many odds, but I am thankful that He is choosing to reveal His goodness in these particular matters!

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Day 6 (March 5)
What a day! Miss Verity had a slew of visitors, part of her adoring fan club who came to oooh and aaah and pray over her in person. Our pastors and their wives plus our weekly Life Group members came in two different groups, and it was such a blessing and encouragement to get to share Verity with them all and hear prayers spoken over her. Also, my dear friend Mimi drove three hours to surprise me for an overnight visit! The family (who already knew about this) prepared a guest room for her and I got to enjoy some time with her this evening and look forward to more girl talk tomorrow before she has to drive home!

As for Verity herself, the little diva had a very promising nursing session this afternoon, during which she latched, sucked, and swallowed multiple times. Granted, she slid off multiple times. But coming back on was her idea this time, and she didn't give up (nor did I, lol). Her nurses were perfect cheerleaders--you should have seen the excitement in our room, lol! They are all so proud of her, and so am I! The next two attempts were nothing at all like that, but we are still encouraged. If nothing else, I am wondering if we will at LEAST be able to bottle feed her? Something to chat with the doctor about tomorrow.

There are a couple of concerns, hopefully nothing too serious, but nonetheless things to stay on top of.

1. This evening we had a few incidents of Verity's O2 levels dipping, with sats in the 80s instead of the usual high 90s. This is the first time that has happened since she came off oxygen. One nurse posited that she may have had a bit of reflux the first time it happened; it dipped and then came back up when we lay her back down in her crib. Verity really hasn't had any spitting up/reflux issues before, but perhaps the extra milk during our nursing attempts on top of the tube feedings was too much?

2. Verity's left eye has been crusty all day, with more ooze appearing this evening. She was not thrilled about getting this checked out, but we are going to try some ointment. It's possible that it is somehow related to the tubing in her nostril, currently on the same side, but the tubing was due to change sides anyway with tonight's cares, so hopefully that will help.

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Day 7 (March 6)
Verity seems to be in a "sleep all day, party all night" mode. It's hard on Mom getting 5 and 10-minute snoozes over a sustained period of time! But that's what 2:00-8:00am looks like around here!

Nothing big today...we still continue to try breastfeeding when we can. I did talk to the lactation consultant about whether the volume of tube feedings is appropriate given the slower growth rate of our T18 babies, and we discussed with the nutritionist as well. We decided that really nothing needs to change at this point; but I was encouraged that they listened to my thoughts and validated them. Verity tolerates her feeds well and acts hungry beforehand. Though nursing is a hit or miss activity, we are taking it slowly and at least enjoy skin-to-skin time. (Ok, I enjoy it, and she tolerates a good portion of it, sometimes screaming instead of snuggling. Sigh. She's very opinionated!)

Slower day for visitors, which was just fine after a big day yesterday. Mimi and I got to spend morning through lunchtime together before she drove home, and I got a nap before a CFA dinner, which I enjoyed with Ted, his mom, Arden, Lucan, and Zaden. The little boys got their first turn actually holding Verity and were utterly delighted. It was so fun to spend more one-on-one time with them. I read books to them in the lounge while Arden and Grandma had some time with Verity, and then we gave her a bath before saying goodnight. This photo shows her clean, fluffy hair and exhausted look afterward, lol. All in all, a good day.

Tomorrow marks a week since her birth!!! ❤

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Day 8 (March 7)
Verity is one week old today! Some quick updates because Mama didn't get a nap today...

* Back up to birth weight! 5lbs, 3 oz

* Recreational nursing continues to go well. No rush...our little girl needs to conserve her energy!

* Doc's goal for the next 7 days: continue monitoring her oxygen sats. We want to be sure her heart isn't overloaded.

* Meeting with the cardiologist scheduled for Thursday morning.

* Verity has only had fortified Mama Milk the last couple of days, and my stash of pumped milk in the fridge is finally overtaking her daily intake (45ml every 3 hours). Woot! Goodbye, formula! Grandma Irene Keist made the astute observation that perhaps the formula wasn't settling as well with Verity's tummy, which could possibly account for her fussiness during her poops! That would be fantastic if we could have a non-fussy period tonight...we will see...

* Today's visitors: family = Ted, Charis, Arden, Kenna, Zaden, and Seanin. I enjoyed snuggling my chunky boy Seanin (whom I haven't seen in person since Friday) and reading tons and tons of books from the NICU book cart to him and Zaden. Friends = Mike & Debra Trunick, who brought some stinkin' cute outfits that I can't wait to see Verity wear! Grow, Verity, grow!

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Day 9 (March 8)
Verity has had a great day, really no updates for her though.

My day: Crazy full morning caring for Verity and FaceTime with my sweet teenage daughter; breakfast not until 10am. Found the hospital showers with the help of my NICU neighbor and sister in Christ, Sarah. Hospital Cafeteria lunch date with my hubby, our first one-on-one time with no kids/responsibilities since Verity arrived, followed by decent coffee & cornetti (but not even close to our Italian favorites). Awesome afternoon nap thanks to a friend holding Verity so I could sleep in peace. Quiet dinner on my own and skin-to-skin time with Verity. Visit with my neighbor to see how her babe is doing and share chocolate. Short nap before midnight pumping session.