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?!

More GI Discussion

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

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

Notes from today's GI appointment:

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

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

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

4. Upper GI/SBFT as soon as possible 

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

UPDATE: 

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

G.I. FAQs

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

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

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

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

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

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

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

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

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

Have you had [insert test here]?

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

Does she take any medication for reflux?

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

Why don't you just get a Nissen fundoplication?

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

What about a G-J tube?

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

So...what now??

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

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

GI Scope & G-Tube Surgery

On Monday Verity and I returned to Children's Hospital for a GI evaluation. She had to stop eating 4 hours beforehand, but thankfully she was pretty sleepy in the early morning. The scan itself didn't take very long, but it was strange and a bit sad to see her strapped on her back to a board with large velcro bands covering her tiny body! Her arms were raised so her little clenched fists were above her head. Once the doctor was ready, the tech rotated her on her side and fed her barium from a bottle. I was glad to see that she did suck and swallow from the bottle! After a bit of this, they did switch to a syringe. Similarly to the swallow study, we watched as the barium made its way down her esophagus and into her belly, but then it went further: her stomach seemed to swell up like a balloon as the barium filled it and made it light up on the screen.

Verity was such a little trooper. She had some reflux, and since she had been dealing with congestion for a few days anyway, it was a bit of a mess that I got to clean up and comfort her before we continued the test. After her tummy was all the way full, we waited and watched...and we did see some reflux that didn't come out of her nose/mouth. Granted, she was flat on her back, a position we NEVER have her in when we normally feed her! But still. It makes me wonder how often she deals with reflux like that.

The results of the test were then sent to the pediatric surgeon, with whom we consulted the next day. He agreed that the risks of a G-tube surgery would far be outweighed by the benefits to Verity, as she is doing so well overall. I was so pleased that he had obviously read some more current research about Trisomy 18, and we were on the same page as far as proactively improving her quality of life. I really liked this doctor--once again, we are so thankful for God's guiding hand in allowing us to meet with caring, compassionate doctors who are working on Verity's behalf rather than fighting us as so many in the medical community do when it comes to children with "dire" diagnoses.

The surgery could have been done the very next day had it not been for the fact that Charis and I left yesterday to travel to her regional speech tournament! So the surgery date is set for Monday. We would appreciate prayers for the doctor and medical staff as well as for Verity to do well under anesthesia and to recover quickly. The G-tube will allow us to pump Verity's food directly into her tummy, freeing us from the horrors of the NG tube she has had since birth!! I am grateful for the feeding tube for keeping our baby girl alive, but I will NOT miss the paranoia we have lived with being worried that it might come out, even more so now that she is alert more often and flailing her arms and hands so much.

We will continue to offer food orally--from the syringe and/or breast prior to starting the feeding pump. We will use the same feeding pump with her G-tube that we use now with her NG feeding tube. I will try to post a video showing you how we currently do feedings for those who haven't seen anything like this before. It was completely new to me when we began caring for Verity outside my womb...almost two months ago now! TOMORROW IS HER TWO-MONTH BIRTHDAY!!!!!

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!

Tube Trauma, Part 2, and the Back Story of the Feeding Tube

A few days ago, right at the start of our oldest son's first debate of a 3-day tournament, I looked over at a peacefully sleeping Verity who was at the start of her 8am feeding session. Something was wrong, though, when I looked at her face: her feeding tube had come out! What in the world?! I had just set up the pump a few minutes before, and though I had not seen any flailing limbs, there lay the end of the tube, with the weight that is supposed to be in Verity's stomach resting on her chest while milk dripped nonchalantly onto her clothing.

ACK!

Unlike the last time this happened (March 18, the day after we got discharged from the NICU), this was at the very beginning of a feeding instead of at the end, so time was of the essence. I called Ted at work and rushed away from the tournament site, headed to the children's hospital. We were quickly admitted to the emergency department, and I explained our whole feeding tube saga to the team there--the last time this had happened, we went to an ER at the medical center closest to our house. But as Ted wisely pointed out, we had an afternoon appointment at Children's Hospital anyway to get Verity's second set of casts...

Doesn't she look pleased with herself?!

Anyway. We hoped that perhaps we could get different tubes and get trained on how to put them in ourselves; living in paranoia that this 30-day tube might come out is fairly stressful. The staff was sympathetic to our plight and did all sorts of checking...but...we ended up watching as they put in yet another 30-day tube, this time in her left nostril, which was noticeably smaller than her right. Time to even them up! After we went to X-ray to verify that the tube was placed correctly, we were able to start her feeding again--by this point it was 10am, two hours after the feeding originally began, and Verity was NOT happy with being put on hold! (I did attempt nursing her during our waiting times...)

The staff had arranged with the orthopedic clinic to get us in sooner than our scheduled appointment, and while we did wait for a little while, we were grateful to see the doctor at 10:45am instead of 12:45pm. While we were waiting, I got a phone call from the case manager, who had been working on our behalf to dig up some information about feeding tube training for us.

So, here is the back story of The Feeding Tube Issue for all those who are wondering, "Why don't you just put it back in yourself?!" or, "Why didn't they teach you how to do that?!"

On March 10, for reasons I did not hear directly from any medical staff, the NICU team decided to place a 30-day feeding tube in Verity. I honestly am not sure why we weren't consulted as to using this type of tube vs. the smaller tubes that parents are typically taught how to insert and change out themselves, but from what I have heard since then, the intentions were good: the doctors thought that it would be helpful for us, since the nurses were even having some troubles inserting the usual tubing. Then, the tube was supposed to be secured with a bridle so that it would NOT come out. This sounded good; when the plan was presented to us, it did give me a measure of relief that I wouldn't have to be the one dealing with the tube insertion. I had no idea what a bridle was, but everyone seemed confident that this was a good plan for Verity and for us as her parents. It didn't occur to me to question it, and as I said, I truly believe everyone had our best interests in consideration.

Well, the bridle was a no-go. Despite being a "micro" size, it was still way too big for Verity's little nose. By this time the tube was placed, however, and so everyone agreed that we'd simply use that tube for 30 days (HAHAHA!!) and then see what happened from there. Later on I learned more about the bridle and am SO thankful that Verity does NOT have it "installed!" Good grief...look at this photo...it's a grown man! Even with this being the smallest size, can you imagine that clip at the end of Verity's tiny little nose?! And how in the world would we even attempt to nurse?!

So that's the story of how we got the 30-day tube in the first place. The first 30-day tube lasted 9 days before coming out, the second 17 days. I'm not convinced we will make it 30 days!! And this, of course, is why we asked the team in the Emergency Department if they could just help us switch.

And this is where things had to be untangled. As the case manager worked with me over the phone, calling me in between calling various parties, the complications became apparent...

* March 27: We had asked our pediatrician about switching feeding tubes; he agreed that it was a good idea and said that would be something to discuss with the GI doctor, to whom he had referred us for an appointment ASAP.

* April 3: The GI doctor agreed this was a good idea; however, he said this is something the home health care providers take care of; whoever trained us on the feeding pump and keeps us supplied with our feeding tube bags and other items, then, would be the ones we should contact.

* April 5: The case worker at Children's Hospital makes all kinds of phone calls. She learns that the home health supplies folks do not, in fact, do feeding tube training at all. Our pediatrician's office doesn't do anything of the sort either (primarily, of course, dealing with children who don't need feeding tubes). She also called our insurance to see if they will cover a home visit from a nurse to train us. They won't.

Bottom line: This training is supposed to be done IN THE HOSPITAL BEFORE DISCHARGE BY A BEDSIDE NURSE!!! Obviously we never got the training because...everyone assumed we didn't "need" it since the 30-day tube was placed before we went home.

Sigh. It's simply a huge mess of communication problems. Everyone means well; I believe everyone has truly been trying to help us. But now that we are out of the hospital, no one wants to step in and take responsibility for something they aren't sure they are supposed to be doing. We just need a bit of training! We just need to get the tubes ordered and be able to start using them!

In the meantime...the current 30-day tube is as secure as we can make it, and Verity is doing just fine. We have another appointment with our GI doctor on April 17, and the case manager put in a plea with his office explaining our situation. We haven't heard back from them (they did call once to verify some details), so I don't know if the doctor and/or his office staff will be able to get us this training or not.

So. That's the story...and now I must attend to Verity and hopefully settle her back down so we can both get some sleep tonight!

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...

Tube Trauma

So, blog updates slowed considerably after leaving the NICU (with all my free time there, ha)! We busted outta there on Friday, March 17--18 days in the NICU with our Trisomy 18 baby girl! By the time we left, we felt much more confident that we were equipped to care for Verity at home. It was a beautiful sunny day, reflecting the joy exuding from us as well as our supportive medical staff.

My welcome home was a bit underwhelming, since kids were enjoying a quiet afternoon movie, but Verity and I did get a handmade sign, so that's something, lol. I got a wonderful nap before waking to enjoy dinner brought by a church friend, and then we had our first official Night At Home. It was pretty much like any other first night at home with a newborn, i.e. not sleeping very soundly. The oximeter kept beeping off and on even though Verity's sats only dipped briefly into the upper 80s before going right back up into the 90s. It made for a very unrestful night...

Saturday we made no plans, so Verity decided to take matters into her own clenched hands: she managed to dislodge her feeding tube at the end of the 5pm feeding! At least, we think it was Verity who did the dirty deed...we originally blamed 19-month-old Rhema, who was toddling around the kitchen when it happened, but the nurse practitioner at the ER said she has seen infants easily get their tubes out with a well-placed finger that then jerks with a flailing arm...and we've seen that motion a lot, lol.

Since the tube is a 30-day tube, one that parents are not generally trained to place (they use an X-ray machine in the hospital to verify correct placement), we had to take Verity to the ER per the discharge instructions (that we had received just over 24 hours prior, sigh). Thank goodness our discharge activities had included receiving an extra tube to have on hand in case of such an event!

The ER we went to was at the hospital where Rhema was born, which is much closer to our home but isn't set up with a full NICU. The NP on duty actually works at the medical center where Verity was born, and she was doing a rotation at the Bellevue hospital. It was a blessing for us, since she had heard all about our family and Verity when she was on duty at UNMC the night before, having just missed us since we were discharged that day! So it was almost like greeting a friend in the ER! Everyone was very kind, and we finished replacing the tube just in time for the next feeding. Whew! We have anchored that sucker down, changing the tape almost daily to ensure that there is no place for Verity (or anyone else) to hook a finger and pull it out again. I'm sure this won't be the last time, but I confess the incident makes me actually eager to learn to do this process myself so we can use the smaller tubes that are changed more frequently.

[As an aside, at our follow-up appointment with our pediatrician at the base clinic, we learned that apparently there was difficulty getting those smaller tubes down properly, so that was a big reason that the doctor at UNMC chose to use the 30-day tube. When Verity grows a little more, our doctor agrees that Ted and I will learn to place the tubes and we will switch. Whew!]

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!!

Information Overload!

Happy two-week birthday, Verity! It's amazing to think of all that has happened in two very long, short weeks. As we wrap up Day 15 here in the NICU, I'm finally getting some quiet time to chronicle today's happenings. First, though, a gratuitous shot of our very-much-compatible-with-life baby girl. Ain't she something?!

It's amazing how even a few ounces of weight gain can make a wee one look so much more filled out! As of last night, Verity was 5lbs, 7 oz, up 4 ounces from her birth weight. Tonight, she was 5 lbs, 10oz! Wowza!

Last week we were hearing optimistic ideas about us heading home Monday or Tuesday of this week. That is obviously not happening, but given our circumstances, I am quite all right with staying put a few more days. Here's today's story summed up in a single photo:

Does that make your brain explode? Because part of me wants to walk away rather than have to deal with all of those cords. But the rational part, the part that tells me to take a deep breath because WE CAN DO THIS, reminds me that these machines represent LIFE for Verity. And this afternoon in the NICU was all about the machines.

First, though, we squeezed in some regular ol' family time. Ted brought 6 kids to the NICU in the late morning. (Our older two are with my mother-in-law at a speech and debate tournament this week.) Rhema had a chance to "hold" her baby sister for the first time...stinkin' cute:

I took Arden, our 13yo son, out of the NICU for a surprise milkshake treat so I could spend some one-on-one time with him. I got to tell him personally how much I appreciated hearing various reports about how amazingly helpful he has been with his siblings. He really has a gift with younger children! And since Charis and Tobin have been away so much with their school and church activities, Arden has had to pitch in extra to help out. I love that kid...and yes, I can still call him a kid, even though he's taller than I am and starting to shave...! Oy! And I noticed today that his voice is deeper. What the heck?! When did this happen???!

After we returned to the NICU, I finally got my lunch and had some time to discuss some things with Ted; we hadn't even begun learning about the aforementioned machines, but our heads were already spinning from dealing with other matters. Our pastor joined us in the family lounge for a short visit, having come to the hospital to pray with another family, and it was perfect timing and a much needed chance to talk and pray with him about some joys as well as concerns.

Meanwhile, our case worker had been busy behind the scenes doing paperwork, making phone calls, and setting up training times for us. First up, training with respiratory therapists on how to use two machines that will help us monitor and care for Verity: a pulse oximeter, which will help monitor her heart rate and oxygen saturations (allowing us to sleep more easily at night and monitor her at times when she may not be in the room with us), and an electric suction machine. A bulb syringe should work fine when things are "normal," but in the event Verity aspirates and we need to clear her out so she can breathe, this suction machine will be good to have. We anticipate it will be an "in case of emergency" tool and not something we will use terribly frequently, but after our research and hearing from other T18 parents, we felt it would be important to have at home. Thankfully our doctor was happy to prescribe whatever we felt we needed to take Verity home, and our case worker handled the paperwork for us.

The respiratory training took close to an hour. By time it was over, it was 4pm, and our littles were done. They had been so very good; we kept Seanin and Rhema in the conference room with us and let them color while we listened and asked questions and signed papers. The others were in the family lounge probably watching stupid cartoons. But since Ted had arrived five hours earlier, it had indeed been a long afternoon for them all, so they headed home, leaving me to consult with the doctor and then continue with feeding tube training.

The only real bit of news the doctor gave me was that he didn't want to hurry us out the door, but rather wait until everyone is comfortable that we are truly ready to go home and feel confident taking care of Verity on our own. He is thinking Friday for our discharge, which will give us a good 48 hours or so to practice with our own machines. I might even switch to one of the "rooming in" options tomorrow or Thursday night; rather than being in the NICU, I'd be just across the hall in a hotel type room, where the nurses are just a few feet away, allowing me to "practice" caring for Verity without any oversight unless I ask for help.

So the feeding tube training was me by myself with the nurse...at 4:30pm...and I had not had a nap all day--I listened as well as I could and absorbed a fair amount, I'm sure, but my eyes were starting to cross I was so tired! I do wish Ted could have been there, but he can join us for the 11am feeding tomorrow. I decided to wait to use our own feeding equipment until tomorrow when I can wake up and feel a bit more alert!

Between all the meetings and discussions, not to mention pumping sessions (because let's not forget that every 2.5-3 hours I have to sit and pump!), caring for Verity, and trying to do normal stuff like, oh, go to the bathroom and eat...I headed into the dinner hour feeling extremely exhausted and overwhelmed. Seriously, being Verity's mom is a full-time job. I KNOW there is a learning curve; I KNOW it will get easier after we practice. I fully believe that God allowed me to experience such dramatic feeding difficulties with Zaden and Rhema to help prepare me for this journey. I'd like to think that eventually Verity will be able to nurse, but the truth of the matter is that for the foreseeable future, she can't do that. Simply keeping Verity alive will require intense time, effort, and energy on my part and, to a certain extent, the rest of the family's as well.

But. Lord willing, it will be a season--Verity will grow bigger and stronger; I won't have to pump quite so frequently; maybe she will even be able to nurse. For now, I will do my best to squeeze in as much of this as possible...