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).

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.

ER Scare

On October 24, as we were eating our dinner, we had one of the most terrifying experiences we've ever had with Verity. We heard her sputtering (a sure sign of reflux and vomiting to come), and before we could do anything, she was spitting up blood out of her mouth while blood shot out of her G-tube, up the extension tubing and into the syringe. As Ted wiped her mouth and tried to calm her, I took a hurried photo and posted it to one of my Trisomy groups, asking what was to be done. Quick responses confirmed out gut feeling: we needed to take her to the ER ASAP! I packed an overnight bag, and we passed the childcare torch to the teenagers (Charis was just returning from a babysitting job herself).

Many people began praying for us as we posted to Verity's page. There are multiple things that could cause bleeding like this, many of which are pretty dire. I sat in the back seat with Verity, trying to keep her awake and praying like crazy. We've made trips to the ER with children before--even with Verity before--but never had I experienced the feeling of such a weighted question hovering unspoken in the air: Would this be goodbye? The beginning of the end? 

We were ushered quickly into a room in the ER, bypassing everyone else in the waiting room. The serious look on the doctor's face only intensified our feelings of dread. It didn't help any that Verity had another bloody coughing episode soon after we got there.

Verity was a little trooper, getting her IV like a champ. She got chest X-rays and a CT scan done, and then we proceeded to wait and answer questions as people came and went. The doctor was on the phone multiple times with a specialist in Denver, and about 3 hours later, we had an answer!

Of all the possibilities, this was an answer we could handle: a nosebleed down the back of the throat! Whew! Poor baby...it made sense, with all the suctioning we have had to do in recent weeks because of her progressively worsening reflux. But oh, it was scary! Everyone assured us we absolutely needed to come in to verify that it wasn't anything worse, but when she was in such good shape and the tests were not showing anything, not even an infection (though we discovered a UTI a few days later, sigh), we were relieved to be able to take our sleepy baby and our tired selves HOME.

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!