Very Quick Update

Charis and I returned today after a few days in Kansas City for the Region V NCFCA tournament. It was refreshing to have a bit of a break, even though our days were full, but I will say I was happy to see my other 8 children when I returned! (And as an aside, may I take a moment to brag on our daughter placing 2nd in the Apologetics category?! Proud mama here!)

Verity's feeding tube got blocked again last night, so Ted got to make a trip to the ER this time. I got his text as we were waiting for the tournament awards program to begin. We were so glad we had asked for them to keep an extra one in the NP's office! It was a much quicker visit than the week before when I had taken her in for the same issue! Thank the Lord this will all be over soon...if we can just keep that feeding tube in another 13 hours, we will be good, ha!

To prepare for the G-tube surgery tomorrow, Verity has to stop eating by 8am, only clear liquids from 8-10am (but I don't know that I want to go and buy PediaLyte?!), with surgery prep beginning at noon and the procedure scheduled for 2pm. I will need to stay overnight in the hospital with her. I have no idea what time Tuesday I'll be able to come home; but I do hope and pray we CAN come home on Tuesday, as that will mean there are no complications.

Please pray with us that the surgery goes well and that there are no problems with Verity being under anesthesia.

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!!!!!

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.

Heart and Heels

Tuesday was a very long day but overall a success! In the morning Verity had another echocardiogram, which the cardiologists evaluated immediately and then met with us afterward. Some of the problems that were present at birth have completely disappeared (thank you, Jesus!). Two tiny ("pin-prick") holes remain, but they are insignificant and are not causing any problems at this time. Moving to a higher altitude will not present a problem; in fact, it may be even better for Verity! We are all looking forward to relocating to Colorado, even though it is always a chaotic time, getting ready for a PCS (permanent change of station). The doctors recommended that after we get settled, we get another echocardiogram so the cardiologists there will have an up-to-date baseline from which to monitor Verity.

So Tuesday morning was easy! We even finished early and had time to grab lunch in the hospital cafeteria (surprisingly good) before checking in for surgery--a tenotomy, or releasing of the Achilles' tendons, the final step in the Ponseti casting method for clubbed feet. (Well, almost final, I guess, if you count the fact that she will need special shoes and a bar afterward.) Here are some photos of the progression...I didn't think to take photos each week in the same position, but you can get the idea...

Prior to any orthopedic work--this was at a regular check-up.

First casts

This is after the 2nd set of casts came off, so
two weeks in casts total.

After 3 weeks/3 sets of casts, side view.

After 3 weeks/3 sets of casts.

The last two photos were taken the day of the surgery. (Humorous bit: We were in the operating waiting area when we were told that they weren't sure what to do about removing the casts...they didn't think that all the way through, apparently, so we carried Verity to the specialty clinics to get her casts removed, then brought her back. It was fun to hold her without any casts, but she seemed a bit consternated (is that a word?!) at the feel of someone touching her legs and feet!

The surgery was very quick; in fact, it took longer to put her casts on than the actual procedure dealing with the tendons. She got a local anesthetic; actually, they put numbing cream on the area after the casts came off, and then she got the local after they whisked her away for the operation. She was away from us for less than an hour and came back in a sleepy little bundle.

Right before surgery. Isn't she a doll in that gown?!

After surgery...final set of casts. They look huge!

We expected a horrific night after the anesthetic wore off, but it wasn't as bad as it could have been. And from what we can tell, Verity hasn't been in pain or discomfort the last couple of days. In four weeks we go back to get these final casts taken off. Then she will get the "boots and bar," which I have heard is pretty difficult...not much sleep, etc. So let's start praying in advance that she will not be phased by the transition!

Hither and Yon

This week! Oh, my. I already posted about our GI appointment on Monday. It's late and my house is quiet, so I need to jump in bed while the opportunity is here. So I won't detail our adventures Tuesday, yesterday, and today, but here's a quick outline of what we've been up to:

Monday: GI Appointment
Tuesday: Echocardiogram and consultation with cardiologists; lunch for Mom and Dad; and then surgery for Verity's Achilles' tendons
Wednesday: No scheduled appointment; however, we made a trip to the ER when her feeding tube got a blockage. Sigh.
Thursday (today): Swallow study

Tomorrow Verity gets a break, although she has to come along to the military clinic for a couple of other family member's appointments.

Next Monday: Upper GI scope
Next Tuesday: Consultation with pediatric surgeon regarding placing a G-tube to replace the feeding tube...So we will presumably then mark another square on our calendar for the surgery.

Did I mention I have 8 other children?!?! Some days it seems I hardly see them. :-( BUT--I am extremely grateful that "out of the blue" three families from our church offered to bring meals this week, and I cannot begin to express how helpful that has been! I even got a much-needed nap this afternoon, the first in quite awhile.

And speaking of rest...bed is calling. We need to leave the house at 6am tomorrow for our appointments. I promise I will take some time this weekend to write about Verity's surgery and the swallow study results.

In the meantime, if you aren't already a member of our Facebook group Verity's Voice: A Trisomy 18 Song of Triumph, I invite you to look us up and see the new photo album I posted. Tuesday's events are also detailed there. I know not everyone is a Facebook user, but it's much faster to post updates there. But you'll get far more details here on the blog! I also hope to write more about what's going on in my mind (sometimes a pretty frightening place), not simply chronicle our to-do lists.

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...