Clubfoot Clinic Check-in

It has been over a year since we saw our orthopedic team, and so we headed to the specialty clinic early Tuesday morning. Our routine is to get a hip x-ray as well as examine Verity's feet, which were clubbed at birth. (You can read about the early treatments when she was tiny here and see some photos of the progression here. And this is the boots-and-bar phase we were in for awhile. Goodness, she looks so teeny tiny in these early blog posts!)

So, we will give an update on her feet first. I don't have a photo handy of her AFOs, which she has had for nearly a year now, but she has definitely outgrown them. (AFOs = ankle/foot orthotics.) She got the best use out of them when she was weight bearing, so in a stander or gait trainer or the like. When sitting, unfortunately her right foot (the "problem" foot that won't flex all the way) would sometimes get red spots, even though we've always been careful to take them off regularly and check. We had noticed her right ankle seemed just a bit tighter, and the measurements from the PT at the clinic confirmed this.

The good news is that overall, there really isn't much change with her feet, other than growth, obviously! So we have a new prescription for a new set of AFOs. The last ones took at least 3 trips to Hanger Clinic to get "right," and they still maybe could have been adjusted even more, but they worked! And the frayed velcro straps and scuffed bottoms were definite proof that we used them daily!

The doctor does not feel he wants to do foot surgery anytime soon, as long as we can continue getting AFOs that fit properly and allow her to work on weight bearing. This wasn't a surprise, as he had said he felt he had done as much as he could with the last tenotomy surgery (tendon lengthening for the Achilles). 

So that leads to the hips. Dr. S has monitored her hips since we first moved to Colorado in 2017. Verity first saw him when she was about 8 months old. Hip dysplasia is common for our little ones, and while Verity's tendons did need a release in conjunction with the November 2018 tenotomy, her hips have looked pretty good her whole life. 

This x-ray, though, showed a bit of a possible concerning trend. Because Verity has not been able to bear weight, isn't crawling, standing, walking, etc., her hip socket hasn't quite developed right. So on her left side, the femur doesn't necessarily stay well in place! For now, we have the hip abduction brace, shown below, which really is not as uncomfortable as it looks. It's soft and easily adjustable.  In fact, we were all pleasantly surprised when Verity calmed down and almost seemed soothed when we put her in it! (We wondered if perhaps it feels almost like being swaddled feels to a baby?!) She took a nap yesterday afternoon while wearing it. However, since we did not have a nurse on duty at night, we are going to play it safe. As you can also see in the photo, Verity often sticks her fingers in her mouth (which, by the way, is a nice developmental step--she usually seems to be rubbing her gums where teeth are coming in). While she has come a loooong way from a year ago when the only reason she put her fingers in her mouth was to stimulate her gag reflex, she still on occasion does manage to gag herself. With her CPAP mask on at night, we don't want to chance this happening before we can fully wake up and realize what's happening! Since her preferred sleeping position is on her right side, we will utilize the brace as we can during the day and during the occasional night when we do have a night nurse.

While Dr. S has been a pretty good provider overall for us, the way he worded some things seemed to indicate (probably unintentionally) his opinion regarding surgery should Verity need it down the road. When talking about her hip issue, he said if the femur comes out of socket and isn't able to be put back in, OR if she starts showing signs of pain, then--for any other child--surgery would be a given. But his opinion of the surgery seemed to be based on expected outcomes for the patient. His example, cerebral palsy clients, referred to the fact that their expected life span is much longer than for Trisomy 18 patients. Because of my tendency to give people the benefit of the doubt, I'd LIKE to think that his seeming reluctance to consider surgery for Verity may be based on what happened during her last surgery with him. Perhaps her reaction to fentanyl (which is now listed as an allergy on all her medical records) has made him gun shy to put her under again.

But...if our girl gets to the point where she needs surgery, we will make sure she gets it! And if Dr. S is reluctant to do it, we will find someone else willing to go forward. However, I'm hoping it will be a non-issue!

Weathering Verity's First Real Sickness

March was a busy month for Verity! In between her big birthday party and getting her first car, we had an emergency trip to the hospital along with a brief (30-hour) stay in the pediatric unit. The week leading up to Verity's party, a few of our kiddos had been sick with some kind of respiratory junk, the first time in a long time we've really battled anything other than minor sniffles. Thanks to our wellness regimen, we were able to contain things pretty well--the kids who did get sick were better within a couple of days, and we managed to keep them as far away from Verity as possible. I had every diffuser in the house kept busy disseminating our essential oils into the air, and we oiled everyone's feet at night and drank a lot of Thieves tea! It seemed that Verity, Rhema, and I were going to escape unscathed.

But alas, in the end Verity did succumb. Frankly, I'm amazed that she was the last to get sick! Her immune system does not seem fragile at all! But of course it hit over the weekend...our nurse warned us on Friday that she suspected something was coming on, and sure enough, Saturday morning Verity was just not herself. She had a low grade fever Sunday afternoon, and we decided to put her oxygen on for a bit of support. We were hopeful that we could ride it all out at home.

But Sunday night things took a turn for the worse. We were so grateful that we had a nurse on duty overnight! She worked with our oxygen tanks as needed but our supply wasn't enough (we only have 2 tiny tanks because we were prescribed a minimal amount--which we aren't even currently using--to help with OSA). We learned later that one of our valves was faulty, so we had an empty tank we thought was full.

Anyway--by 4am we were making plans to take Verity to the hospital, but before I could collect my thoughts and my things, our nurse told me I needed to call 911 instead. Verity was non-responsive and turning dusky. The EMS team arrived quickly and gave Verity a nebulizer treatment and more oxygen before we strapped her into her car seat and secured that into the ambulance. I rode along with her, and it was obvious that the treatment had helped significantly--she simply sat quietly, looking around!

They never did any testing to find out what respiratory thing she was fighting, but whatever it was, it didn't knock her out too long. We were admitted to the hospital and stayed overnight. Verity slept almost the whole time we were there. We knew she wasn't feeling well because she never fought her cannula! The next morning, though, she was doing well on minimal oxygen (she was only at 1/4L after arriving anyway), so we were discharged with more tanks from our medical supply company and orders to keep her on 1/8L probably for "a couple of weeks."

Three days later, we followed up with her PCM, and after a half-hour trial, we were able to ditch the oxygen! Of course she was heavily monitored, but praise the Lord we never did have to give it to her again. And a follow-up with her pulmonologist a week after that also gave good news--she doesn't think Verity needs to be followed, as her lungs are (and always have been) so clear. However, we did put another follow-up appointment on the schedule just in case the sleep clinic (scheduled for the end of May) doctor decides that Verity should be seen by pulmonology again.

Genetics Appointment

On Friday we drove to a Denver-area children's hospital to meet with a genetics counselor and doctor. I honestly wasn't sure what the purpose of this appointment was, but even though we didn't gain a huge amount of information, I still think it was beneficial.

First things first: Verity has gained weight! As you may remember, we switched to a 24/7 continuous feed when we saw that she had been losing weight with all her terrible vomiting issues. In exactly one month, Verity gained 13ish ounces, so she is now 13 pounds, 3.1 ounces. And she is now exactly 2 feet long!

One wonderful thing: we were given a hard copy of the Care Book, which is a resource from SOFT (Support Organization for Trisomy 18, 13, and Related Disorders). I had started reading the online copy, but to get all 70-some pages in a printout was wonderful and told me right off that this doctor is up-to-date with the research!

As an aside, we ONLY support SOFT as a resource for those with trisomy conditions. There is another organization out there that is much more negative. If you feel led to support an organization, please, please, PLEASE ask someone before throwing your money at what seems to be a worthy cause but maybe isn't really what it seems to be.

Back to the appointment: We answered lots of questions, reviewed Verity's history, and talked about possible resources for us within the Children's Hospital network, some of which may be helpful but others maybe not as much because we are already getting great care in our more local area. The one piece of info that I think can help us tremendously is knowing about a couple of other ways to know for sure what Verity's caloric needs are--we can't seem to get her total intake up to the volume that the dietitian and GI doc would like to see, and I can't help but wonder if she really doesn't NEED that much. Clearly she is gaining weight, and she looks so incredibly healthy! (Praise God for that!)

We don't need to have a return visit for another year. Dr. L said that mostly he would like to check in to make sure that we can have the most up-to-date research and information and discuss Verity in particular and see what she might need. It was very refreshing to have such a perspective from someone in this field, as I have heard awful stories from uninformed doctors who make outdated assumptions. We are grateful that the many caregivers in Verity's life are so supportive and either already knowledgeable or else very willing to receive new information.

GI Update and the pH Probe

Following some significant increases in reflux, plus communicating with our GI's office about setting up a pH probe study, we decided it would be good to have an appointment with our GI doctor last Friday (October 27). This was scheduled before the scare that took us to the ER a few nights beforehand, so it was good to have a follow-up already in place.

I don't have my notes with me--I'm writing this from the hospital while Verity's pH probe is in place and we are here for 24 hours of monitoring. But as best as I can remember, here are the main points from this visit:

* Verity's weight gain has tapered slightly; she only showed about 1-2 ounces of gain in a 12-day period.
* Verity had begun taking Zantac after our ER visit; Dr. S increased the dosage from 1ml to 1.2ml twice a day.
* Dr. S wanted to test her urine, and we learned the following Monday that Verity has another UTI.
     --She is now on another round of antibiotics (Septra).
     --We will schedule a visit with her PCM regarding her having two UTIs in a two-month period.
* Since we are having difficulties increasing the volume of breast milk (we had decreased to 85ml per feeding and are now today at 90ml), he asked us to try fortifying with Liquigen and gave us a sample bottle. (Thankfully this isn't like the formula fortifier we were using in March and April that unsettled her tummy so--this one's ingredients are much less suspect.)
* We all agreed the pH probe will give us valuable information about the frequency and intensity of the reflux, which hopefully will give us an indication of the best way forward for Verity. Two more extreme possibilities are a Nissen fundoplication and a G/J tube, neither of which is really on our radar, although we would consider a Nissen if it comes to it.

Following this visit, we had nearly a week before our pH probe was scheduled, during which Verity received her medications faithfully (thank the LORD for our new nurse who helps us with all of this!). Every single day this week, Verity has had more than one bath due to her vomiting. The good news is that she has been pooping daily--sometimes more than once!--whereas the previous two weeks she was on more of an every-two-days schedule. (Side note: peppermint essential oil. That is all.)

There have been at least a couple of times in the last week when Verity has not only vomited an exorbitant amount out her mouth and nose, but she has also stopped breathing long enough to make this mama panic. I was alone with her early this morning when it happened, and I haven't been that terrified in a long time. Now, of course, she is sleeping peacefully!! We are having the best nap she's had in I don't know how long!! I can't help but wonder if it will skew the pH study...

Which leads me to why we are here at the hospital: the pH probe! We had to be here at 10am for an 11am start time. It was already a stressful morning after Verity's vomiting/choking/not breathing episodes following what was to be her last feeding before coming to the hospital. (They needed her stomach empty for placing the probe...no worries there! Sigh.)

We spent about a half hour in a waiting room and 2 hours in a pre-op/procedure room. Well, I was in the room 2 hours. Verity was taken to get the probe placed, then came back, then x-rayed to ensure proper placement, and then we hung out until our room was ready. We finally started a gravity feed at 1pm, 7 hours after her last feeding! Poor pumpkin was hungry! Of course she fell asleep in time for us to have to move...

We hauled our stuff to the pediatric unit, and then we settled into our room, which we are sharing with a sweet little gal named Cheyenne. Finally Verity fell asleep, getting a 3-hour nap, possibly the longest uninterrupted sleep she has had for a very long time, since her daily naps range from 5-30 minutes and the last few nights she has awakened an average of 2-3 times per hour.

So, how does this work? The probe is placed in Verity's esophagus, and we have an electronic "diary" of sorts so that I can note a few pieces of information, which will then be compared to the pH levels inside her esophagus. I punch buttons to note:

* When Verity is upright and when she is lying down;
* When her feeds begin and end; and
* When she is vomiting (1), fussy (2), or having difficulty breathing (3). (Thankfully I've only notated the latter one time, and that was shortly after the probe was placed...we wonder if she may have been gagging a little. She turned red and didn't inhale for a few seconds, but it passed quickly, unlike this morning's scary episodes.)

So far no vomiting, which is wonderful! But we are praying that the 24 hours of monitoring will show a good picture of what Verity deals with on a daily basis. I have noted quite a few "fussy" times, and more often than not, the pH number is low (indicating acidity). It will be interesting to see how the night goes, now that she has napped so well in the afternoon (another half-hour nap followed the 3-hour nap!). I'm prepared to stay awake all night...my Facebook and blogs may explode, lol.

I don't know how long it will be before we get results from this test, but we will of course keep everyone posted. Thanks for praying!

Current Events with Verity!

In a recent update, I mentioned that we may have found some solutions for Verity's reflux. I had to leave it hanging, hoping to be able to detail our new feeding routine sooner rather than later. Facebook is faster than blogging, so I posted a video a few days ago about the open syringe gravity feeds we have been doing for Verity. I'm hoping that even if you aren't on Facebook, perhaps you can view the video? If not...just know that it has made a huge difference overall--no vomiting at all!--and while we aren't totally rid of the tummy issues, the lack of spewing out of her mouth and nose has made her AND us much happier. Our T18 babies unfortunately just have lots of digestive issues due to their smaller physiques or other anatomical issues. (She is fussing and grunting in the background even as I type...her daddy is with her, though, so I'm sneaking some time here.)

I've been on overload the past couple of weeks. Now that Verity is in The System and referrals are coming through, I have spent an extraordinary amount of time on the phone and/or dealing with paperwork. The good news is that my calendar is filling up with appointments. The bad news...is that my calendar is filling up with appointments. :-/ Here's a rundown of what we've been doing the last couple of weeks JUST related to Verity's specialty care:

18 Sept - Chiropractor appt
19 Sept - Physical Therapy (at our house)
20 Sept - Occupational Therapy (at our house)
21 Sept - 40-minute phone consultation with dietitian
21 Sept - Physical Therapist & Vision Specialist visited/assessed Verity

26 Sept - Physical Therapy (at our house)
28 Sept - morning - Meeting with Dietitian (at our house)
28 Sept - afternoon - Occupational Therapy (at our house)
29 Sept - morning - GI appt
29 Sept - afternoon - Chiro appt

Note this does NOT include all the time on email and the phone setting up future appointments, dealing with getting new medical equipment from a local medical supply company (feeding pump & supplies, suction machine...), fending off calls from bill collection agencies, contacting TriCare, contacting TriCare again, finally getting TriCare to pay for all the stuff they said they'd pay for...

The Resource Exchange (TRE), which is (I believe) the equivalent of Iowa's Early Access services that we were getting before moving, has been fabulous in working with us regarding our immediate goals of helping Verity with her feeding and sleeping issues. I am very fond of the ladies we see on a weekly basis at this point, and I am immensely grateful that they come to our house instead of me having to pack up and go somewhere. They are very flexible, also, and when it works out, Christine (PT) and Susan (OT) try to come at the same time...it just hasn't always worked out.

Upcoming appointments, aside from TRE meetings:

3 Oct - Ophthalmology
16 Oct - ENT (for requesting a sleep study)
17 Oct - Orthopedics
26 Oct - Cardiology

And don't even get me started on all the different dates I will be dragging children to our new dentist's office for overdue cleanings. Sigh. I hate moving.

But...finally we are moving forward with our continued commitment to providing Verity with the best care we possibly can.

Doctor Input...Finally!

After two months, Verity finally had an appointment! I never thought I'd be so happy to take her to a doctor, lol. After her first several months of life, with multiple appointments each week, I thought I'd enjoy a bit of a break so we could focus on our move, unpacking, getting settled, etc. And it would have been fine if Verity's condition hadn't changed once we moved to Colorado!

Anyway, we saw our new military pediatrician, Dr. Hatch, and I like him just fine. He's not Dr. Toth, who did happy dances every time he saw us because of how amazing Verity was doing, BUT I will give him the benefit of the doubt since he needs to get to know us, ha! I did feel bad for him because, despite our best efforts (including an in-person visit by my in-uniform husband ahead of time), somehow he was not given any of Verity's information beforehand...so I spent a half hour waiting with a nearly naked Verity in the exam room while he went through paperwork to acquaint himself with Verity's file. Verity passed the time by soiling two diapers and made a FABULOUS first impression by having a full-on blowout on the table just after Dr. Hatch came in the room. Ha!

So, the rundown: Verity is 11.6 pounds, 22.5 inches. She has only gained one pound in the last 2 months, but she is proportional and following her own growth curve, and Dr. Hatch was not concerned about that. I was relieved, because when I realized her weight gain was only one pound, I immediately began worrying that her reflux was harming her growth. :-( But he is pleased with how she looks overall and stressed that she has her own growth curve and based on that, she is doing great.

Everything we talked about went onto a notepad, and he granted everything we asked for as far as tests and referrals PLUS some we hadn't specifically addressed. His nurse called me early the next morning to confirm the vast list of referrals, which include GI, orthopedics, cardiology, ENT (for a sleep study), ophthalmology, PT, OT, neurology, genetics...and I don't even know if I've listed everything! (My list is hastily written elsewhere...)

Meanwhile...we still had a really rough week with Verity's feeding and tummy issues, but we may have stumbled upon some solutions. I will have to leave you hanging, though, because it's time for AWANA! Plus, I want to give our new protocol time to see what happens. But the good news?

Verity slept for 8 hours last night!!!

Children's Developmental Clinic

At the end of May we had the opportunity to spend the morning in the Children's Developmental Clinic, an all-in-one-day approach where various doctors came to our exam room instead of us going all over the place to visit with specialists. We had been referred to this specialty clinic back during our NICU stay, when we met with the geneticist who works with this team. Anyway...initially our appointment had been set for July, AFTER our moving date! Thankfully we caught the mistake (our own paperwork listed June as the appointment date), and they were able to work us in May 31.

Verity and I were up early to prepare for our big day. (Ted and 4 of our kids were in Colorado for a family visit and house hunting trip. We have a rental--hooray! Looking forward to being settled in our new home with mountain views! But I digress...)

As you can see, Verity was exhausted from getting up early, ha! Actually, if I recall correctly, due to a concentrated prayer effort (I believe!), Verity actually let me get a decent night of sleep the night before this long day...a much-appreciated gesture, to be sure, after a number of horrific nights while single parenting.

We first met with a pediatrician for an overview. He showed me Verity's growth chart--at 8 pounds, 11 ounces, she's still a little peanut for a 3-month-old, but he was pleased with her growth curve, as it is proportional and definitely trending upward. I spoke with him about her seemingly unending fussiness, and he said that if it doesn't improve after some more time, he would look into possibly trying reflux medicine, but he wasn't sure that was the best first option. Overall, he was pleased with her progress and her appearance, which of course was incredibly encouraging to this mama!

Next we saw an orthopedic representative. Our doctor who did Verity's castings and tenotomy wasn't available, having had her own baby a couple of weeks prior. The lady who came in admitted that the boots and bar wasn't her specialty; when I asked her about how to better help Verity's feet stay IN the boots and avoid pressure sores, she called in a man from orthotics who ended up being my favorite person of the day: he took one look at Verity's bar and pronounced it TOO LONG! He took it to his shop, shortened it maybe 2 inches or so, and voila! Soooo much better! In fact, Verity spent most of the rest of the day sleeping, lol. Clearly it wasn't the cure-all, as she is still a terrible sleeper at night, but it has helped tremendously with her overall well-being. And Jim also gave me lots of great little tips for getting the boots and bar back on without so much of the trauma-and-tears routine. I am so very grateful. Below you can see a side-by-side comparison of the before and after bar.

Next up, a physical therapist. Her recommendations for Verity included ways to help her do a "push-up" kind of motion to develop those muscles. After 30 years in this profession, she clearly knows a lot and has a lot of practical wisdom, such as trusting our own parental instincts and asking therapists about research to back up their suggestions (or preferences). Best quote: "She is so precious! Your main job is to love her." Aaaaaahhh. More wisdom included to keep on keeping on--keep doing what we're doing; let Verity lead but also let her go at her own pace. Wonderful advice.

The occupational therapist also gave some great practical tips. Since tummy time is not a favorite for Verity, she recommended doing it at each diaper change, just a quick, short burst that would make it part of our routine. For Verity's clenched hands, she suggested a small bit of cut up cloth to roll up and put inside her hands to help with the sweat and skin breakdown as well as give gentle stretching for her fingers. Also recommended: lotion massages, starting at the shoulder and working down to the hands to help relax them and allow us to open up her hands a little more easily. [As a side note...it has now been almost 2 weeks since we were at the CDC, and I confess I have NOT yet done the cloth-inside-the-palms thing, although I did locate and wash the washcloth I intend to cut up for this task!! But, on the plus side, her hands have been so much more relaxed recently, allowing us to work our thumbs and sometimes plastic toy rings inside for her to "grip" and do a bit of "tug-of-war." So...we are making progress anyway!]

The genetics team visit was a very short one; I hardly have any notes. I did learn (upon questioning) that they aren't really interested in pushing for more testing to see if Verity truly is a full trisomy 18 or if she might be mosaic. (Some have questioned, because she is clearly doing much better than many FT18 babies...or at least better than a FT18 prognosis.) Otherwise, the only things I wrote on my note sheet were to "keep doing what we're doing" and "keep the bar of expectations high."

Finally we saw a social worker. Since some folks had recommended looking into respite care, I did ask what she knew about that, whether military coverage allows for anything like that or not, since we heard at one point that Tricare doesn't pay for home visits from nurses (back when we were trying to figure out if we could learn to place the NG tubes ourselves). She said the EFMP folks (Exceptional Family Member Program) would be the place to start asking and that with programs like the ones that pay for respite care, generally the funding is available but it's usually up to the parents to actually find the caregivers themselves. The Colorado Early Intervention people could probably give us referrals. Obviously this isn't something we have time to investigate before our move (which is happening in just about a month, eeeek!). Thankfully, though, we have been blessed with an amazing church family, and Verity has had several overnights with loving ladies who have offered to give us the gift of sleep!

So! That's the story of our visit. We were there a total of 4 hours, and it was all positive and encouraging feedback.

Hearing Screening

Because Verity failed her newborn hearing test, we had a thorough testing session scheduled yesterday, followed by a consultation with a doctor. I drove to where I thought the appointment was (same Boys Town Research center as the GI doc we see) only to learn that I should have gone to the downtown location. Oops. Thankfully it wasn't a problem (other than driving for an extra hour plus pushing everything back, thoroughly filling my afternoon!)

Verity had to be asleep for the test, and thankfully she did great. (Maybe we should have them test her during the night, lol.) Of course, it helped that I held her and kept her pacifier in her mouth while sitting in a cushy armchair. I think I got more sleep during the test than I did the night before, ha!

She had an Auditory Brainstem Response (ABR) test: "electrodes on the head pick up the brain's response to sounds presented to the ears. This test can provide information about the amount of hearing loss and how well the hearing nerve is working."

Because the initial responses showed between moderate to severe hearing loss, the tester then placed an electrode (held in place by another person) against the bony part of Verity's head behind her ear to see whether there was a true lack of ability to hear or whether perhaps the difficulty lies in her teeny tiny ear canals or possibly fluid in the ears.

With the second portion of the test, they determined that Verity is in the normal range for hearing low frequencies, and only in the mild loss category for higher frequencies.

At this time, there is really nothing to do other than wait for Verity (and her little ears!) to grow. Her canals are SUPER tiny, not uncommon for our T18 babies, and it is possible she will later have tubes in her ears and/or wear a BAHA (bone-anchored hearing aid) headband, but she will need to have a bigger head, lol, plus be able to sit up.

Meanwhile, it helps to know that her left ear is better able to hear than her right, and that when we talk with her, we need to talk in a fairly loud speaking voice and try to minimize distractions in the background. (I know, right?!?! Bwahahaha....)

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!!!!!

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...

Casting

Cast all your anxiety on him because he cares for you. 1 Peter 5:7

On Wednesday we had our first appointment at the children's hospital--the first of many, I might add. Kenna volunteered to go along as my set of extra hands, and I was grateful for her cheerful company as well as her willing help. It was a cold, rainy day, with poor visibility most of the way, always a joy when driving someplace new. Thankfully the free valet parking eased the stress a bit, allowing us to find the orthopedic clinic with a few minutes to spare.

Verity's clubbed feet the day of her birth

It was our impression that this visit with Dr. W would be a consultation, or an information-gathering appointment. Three different professionals (our NICU doctor, the physical therapist who visited us in the NICU, and our military pediatrician) had all indicated that anything we would do concerning Verity's clubbed feet would happen months down the road. So when Dr. W started talking about casting Verity's feet and the process she would go through, I asked when she recommended starting all of that. "Well, today! If you're OK with that," she answered, and I'm sure she was thinking, "Isn't that why you're here?!" I explained what we had been hearing on our end, and Dr. W responded, "The sooner the better!"

Well. I guess I should have done my homework prior to this appointment, but it actually did make sense that treatment would be easier and faster if we work while Verity is still newborn. In fact, Ted and I had thought in the beginning that intervention while her bones were still more pliable would be what the doctors would suggest. It was just a shift when we were thinking that nothing would happen before our move this summer, let alone immediately!

I called Ted at work to run it by him, and he said to go for it if I was okay with it. WAS I okay with it??!

I thought I was. It helped that Verity did very well on the table while the doctor quickly but tenderly worked. Verity had the hiccups, and she just lay with her eyes as wide open as can be (which for her isn't very!), looking around and shaking each time a hiccup came. She didn't fuss at all, which helped me feel that this wouldn't be so terrible.

But then the casting process continued right up her little legs! The doctor explained that the casts would just fall off if they only covered the feet or even just the lower legs. So, all the way up to the diaper line they went. A bit of smoothing and common sense reminders (sponge baths only, no signing or decorating the cast until after 24 hours) and the job was finished. I was left awkwardly holding my baby, trying (unsuccessfully) not to rub wet plaster on myself or the car seat as we buckled her in. By this time it was close to feeding time, and Verity was no longer hiccuping nor happy.

We stopped by the scheduling desk on our way out; the process really doesn't take that long in the scheme of things...only one week per cast, with 4-6 casts total, depending on how well the adjustments are made. The process is known as Ponseti casting, with the series of casts bringing the feet around to a neutral position. At the end there will likely be a minimally invasive surgery to lengthen the tight Achilles tendon. And then another cast will probably be in place for I don't know how long. And then we go to boots and bar to prevent recurrence.

During the long (and still rainy) ride home, I heard Verity make noises I've never heard her make before. She wasn't exactly screaming, but she was clearly unhappy despite the feeding that was going on. Her noises sounded like a cross between grunts and moans. It broke my heart, as did the memory of trying to hold her with her clunky casts.

What have I done?!

That's all I could think of the whole ride home. The driving rain didn't help my emotional state any.

I did some digging and asked some questions of other Trisomy parents. The rational part of my brain assures me that we did make the right decision; we are setting Verity up for success down the road. Doing this sooner rather than later will mean a much shorter time in casts, though we will have to be vigilant with the boots and bar process.

The fact that we are treating her club feet now rather than later is even a good sign; other T18 parents delayed treating their children because they were in a fight for their child's life in the beginning and had to deal with all kinds of other health concerns or even surgeries. And this makes me feel a bit silly getting so worked up about the casts.

But I can't deny that it hurts my heart to see my sweet little babe half covered by these clunky, awkward casts. She will only be teeny tiny for so long; I already miss cuddling her whole soft self and playing with her little feet. I can barely see the tips of her toes now. I loved squishing her heels; the way her feet were formed caused her heels to feel puffy, almost like a big bubble from bubble wrap packaging.

The first night with the casts on was brutal. Neither Verity nor we parents slept much at all. Last night wasn't much better. But the days have been good; it doesn't seem as if Verity is in much pain or discomfort. And while the casts aren't any less awkward, we're learning how to manage them. Grandma and I gave Verity a sponge bath this morning, and she loved having her hair washed in the warm running water as we held her over the sink. And the kids enjoyed signing the casts...perhaps we can get more creative with her later ones!

So, all in all, I'm trying to reassure myself that we are doing the best we can for Verity, and while the casts aren't my favorite part of helping her, they are a piece of her own unique story, one that is being written completely with love.

The First of Many Appointments

Monday morning we took Verity in to see our pediatrician at the military health clinic. I LOVE Dr. T, who has seen most of our kids during our time at this assignment. He is so compassionate and practical! I had taken Rhema to see him for her 15-month well-child appointment soon after we got Verity's diagnosis last fall, and I ended up in tears in the exam room asking Dr. T what kind of support they could give us if we were able to bring Verity home. His response at the time was so encouraging and reassuring! We had touched base with him last week via the NICU staff, plus Ted had met with him in person during his TriCare runnings around on base, so Dr. T was well aware of how things were going with Verity after her birth.

Our appointment was so incredibly positive. Verity had gained weight and was tipping the scales at 6 pounds, 1 ounce (up from 5 pounds, 12 ounces the night before we were discharged). Dr. T was practically bouncing up and down, he was so excited to see how well Verity was doing! He literally could not keep from grinning as he said, "I usually try not to be overly positive in times like this, but when I look at her and all her stats and how well she's doing--it's really hard for me NOT to be super positive about her!" Oh, happy day! He answered the questions we had, talked us through our assignment transition process, and noted the case worker would meet us next week. He also wanted to schedule us to come in next Monday so he can have an opportunity not only to check up on Verity but also see how we as parents will then be coping with everything after having some time to settle in at home. He noted that we will have plenty of appointments to keep us busy and didn't want to add to our stress, so he won't make us come in randomly--however, we can say the word and come in anytime we feel we need to. And of course he wants us to do the normally scheduled well-baby appointments.

I'm starting a list of questions to ask him at next Monday's appointment, to include whether we can try continuous feeding at night to allow us parents a wee bit more rest. I'd also like to know exactly what evaluations she will be receiving in the coming months. Here's what I do know...all these appointments were scheduled on our behalf before we even left the hospital:

29 March = consultation with orthopedics
19 April = echocardiogram, immediately followed by a consultation with cardiologists
23 May = audiology testing with possible additional follow-up immediately after initial testing if further tests/info needed
19 June = comprehensive medical evaluations (4 hours) with a host of specialists

It's that last appointment for which I'd love a breakdown; what exactly will this entail? Other Trisomy parents highly recommend a sleep study to check for apnea and a swallow study before bottle or breastfeeding. I'd like to know if those are scheduled for that day and if not, see if we can get something scheduled before we move in July. Verity will be nearly 3 months old by the time we have this comprehensive appointment; I have no idea if she will be able and willing to nurse prior to that time or not, but I intend to keep trying!

Meanwhile...we are just plugging away at home, trying to figure out how to not only keep Verity fed and happy but also the army of other people God has put in our lives! We are grateful to have both grandmas with us for a short overlapping time. Ted's mom will head back home in about a week and a half. Hard to believe she will have been with us about 2 months!! It has been such a blessing to have her here, and we will miss her AND the wonderful help she has provided. My mom is able to stay somewhat indefinitely, and I'm thankful that we will have her and her years of nursing experience to help guide us as we navigate our new normal.

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...

Best. Update. Yet.

Day 14
Today turned out to be a much bigger day than any of us could have anticipated. As I waited for Ted to arrive, I got word from our nurse that the cardiologists had ordered another echocardiogram. We weren't sure whether this was a good thing or a bad thing, so, being able to do absolutely nothing other than wait, I continued with my plans to make the trek to the Other Side of the Hospital Universe to shower. (Interestingly, the Infectious Disease Hallway smelled strongly of freshly baked chocolate chip cookies today...)

After Ted arrived and we shared a lunch from Schlotzky's, we got a phone call from Dr. M, the cardiologist who led the discussion with us last Thursday about Verity's heart. She explained why the team was requesting a new echo; the reasons were twofold:

1. There was some unexplained activity around the pulmonary vein--this is completely different from the issues we discussed last week, and they wanted to check it out more closely.

2. The large VSD, the one that Dr. A had initially told us would require surgery before Verity's first birthday...the large hole that in all likelihood would not close on its own, the way the smaller two probably would (and already have started)...yes, THAT hole...seemed to be starting to close "on its own." They wanted to see another echocardiogram to be sure.

Well! It's always good to get news that is much BETTER than one expects! Dr. M said she would call after the results came back, so Ted and I made plans for a milkshake date for the two of us and a much-needed massage for me.

While we were getting ready to go, Verity had a little episode: she pooped so hard that she had some reflux and aspirated stuff out of her nose. Her oxygen sat went down into the 70s, which meant the alarms started going off, but then the numbers climbed higher slowly but surely. Meanwhile, we were suctioning out her nose and repositioning her to try to help clear her airway. A nurse stepped in to help and was so calm about everything, I didn't think there was much of anything to worry about...but then I watched as the nurse quietly repositioned Verity, listened to her chest, and continued to hover over her and work with her, and then I noticed her little chest caving in with each breath. It was alarming: the numbers on the monitor were perfectly normal by this time, but she was clearly having difficulty breathing. The nurse suctioned out more junk, continued to work with Verity, calmly listened, wash, rinse, repeat. After a tense period, she was breathing more easily and the nurse seemed satisfied with what she was hearing (or not hearing), and the scary part was over. But it was definitely a wake-up call...I was reminded of the warnings from our Trisomy families that our littles can "silently" aspirate. Despite how well Verity has been doing thus far, we can't take anything for granted and must remain alert, especially if/when she gets sick.

I had a hard time leaving Verity after this, but we stayed around long enough to verify that she was doing much, much better and had two nurses saying they would specifically be watching her so that I could indeed go get my massage. I'm sure it won't be the last time I experience Mom guilt for leaving my baby. :-( (As an aside, I scheduled the massage because I haven't been able to turn my head to the right for the last few days; my muscles are that tight and knotted. I'm still sore and having difficulty turning that direction, but my shoulders and back are much less tense.)

Ted headed home after walking me to the massage clinic (about as far away as the showers, but in the opposite direction). As I was headed back to the NICU after my appointment, I got a call from Dr. M with the results of the day's echo. Sure enough, that large VSD is starting to close on its own! Whatever is going on with the pulmonary vein is not anything worrisome. The team wants to continue to monitor things, but as far as they are concerned, we can be released from the NICU whenever the doctor here is comfortable sending us home, and best of all...

THEY DON'T THINK SHE WILL NEED SURGERY!!!!

Verity does a victory dance of joy!

I texted the news to my sweet friend and prayer partner, who was here on Friday and prayed specifically that the holes in Verity's heart would close up and be healed. She wrote back right away to tell me this:

"Yesterday in children's church Zaden asked for prayer for Verity to be here on earth for a long time. We prayed that her heart would heal. Prayers of children I think avail much."

Indeed! Why do I marvel at all...I had wondered why God didn't show us via ultrasound the issues with Verity's heart so that we would know about that before she was born. Now I think what a blessing it is that we didn't know; surely it would have only added to the mental and emotional burdens we already carried throughout my pregnancy.

I praise and thank God for these answered prayers; at the same time, I am determined to stay yielded to His sovereign plans and purposes. I maintain that God is good no matter what our circumstances; I have wept with parents whose little ones were NOT healed, or who were NOT born alive. I don't understand why God has allowed our little Verity to live and (so far) thrive with such a positive potential outlook when so many other sweet children have had parents fighting for and with them and yet had to say goodbye all too soon.

I rejoice...yet I continue to ask God to let us not take anything for granted but rather help us to cherish what we are given.

The "H" Word

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

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

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

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

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

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

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

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

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

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

Meeting with Cardiologists

Ted and I met with several cardiologists this morning. We went over the anatomy of the heart and discussed the various issues seen on the echocardiogram from Verity’s first day of life. 

They explained several conditions involving various connections between the arteries and veins immediately outside the heart (one of which is a PDA, patent ductus artenosus, say that five times fast!), all or most of which should resolve.  If by chance they don’t resolve on their own, these minor defects, while not life-threatening, could certainly be fixed if we choose to intervene with surgery on the more concerning issue (in other words, if they are doing surgery anyway, why not go ahead and fix the minor issues as well?). 

The biggest problem with Verity’s heart are the three VSDs: ventricle septal defects. Two are small and are toward the bottom (“meaty”) part of the heart and are not a major cause for concern; VSDs of this nature often resolve on their own, and if they don’t, the size and location are not prohibitive.  The most concerning VSD is considered “large” and will begin to affect the relative pressures between the right and left sides, which are important to the overall flow of blood to the body and lungs. If the pressure is higher in the body, oxygenated blood spills over and gets sent to the lungs, and less saturated blood is all that’s available to the rest of the body. Right now, the blood vessels in her lungs are constricted (as is normal for a newborn recently out of the womb), which keeps the pressure on that side higher, which allows the damaged heart to more closely mimic a normal/healthy heart.  This is a good thing—it means correcting the problem can wait until she’s bigger and can better withstand surgery. We also talked about the fact that the valves to Verity’s heart are thicker than normal, which is not causing any problems now, but bears monitoring as there is a possibility that the thickened valves could become stiffer over time, which would make her heart work harder to get blood in and out.

Three options were presented to us:

1. We could do nothing, possibly monitoring her but allowing her body to function as best as it can on its own, knowing that some of the problems might heal on their own over time (although they might not). As Verity’s heart grows, the smaller holes are certainly more likely to close up on their own than the larger VSD; however, we could choose to avoid the risks associated with surgery altogether in favor of minimally intervening and creating as high quality life as possible without undergoing major surgery.

2. A less invasive treatment option, meaning an option that would not require them to stop her heart and go inside, would involve putting a band around one of the pulmonary blood vessels immediately outside the heart.  This has the effect of artificially raising the blood pressure in the lungs, which keeps her functionality where it is right now with her lungs still operating at higher pressure.  The constriction band would not grow with her, however, and it would need to be replaced in a matter of months.

3. Finally, full surgical repair, which involves stopping her heart and putting her on a heart/lung machine for the duration of the procedure.  This option would allow the surgeons to go in and fully repair the defect(s) in the inner wall of her heart.  The surgery is more risky and more intrusive but offers the possibility of being “one and done” if the repair is successful. 

Before we go further, I will note that, based on the information we received today, we feel the right thing to do is whatever we would choose for a child without Trisomy 18, and that is the full surgical repair. Why bother with option two, which really is only a temporary fix? Verity shows good health overall—we feel she deserves the opportunity to buy more than just a couple months’ worth of time. And we would rather give her the chance to have an extended life span rather than deny her the opportunity simply because of her T18 diagnosis; the risks of surgery, therefore, are rather to be taken than making a decision (i.e. doing nothing) that will almost certainly shorten her life. God will direct the outcome of the surgery, and we trust His sovereign plan.

With that said, it was of interest that Verity’s case will be discussed Monday at the weekly gathering of the full team of cardiologists from this area. This is a time when all the experts evaluate a given situation, discuss all kinds of angles and viewpoints, and collectively come up with a “recommendation.” We of course are not obligated to follow that recommendation; however, with so many minds mulling over all the facts, there may well be other considerations that we have not heard about with only a few people looking at the data. To give the fullest picture, a follow-up echocardiogram was performed this afternoon (which I got to watch—fascinating technology!). This will clearly show whether those minor flaws seen at birth have begun to resolve yet or not and will give a full and current picture of her heart for the doctors.

Meanwhile, we have a list of things to watch for as Verity grows, and the goal is to get her as big and healthy as possible before doing the surgery. If her growth slows, for example, we will need to get surgery scheduled sooner rather than later. The biggest question for us is whether we should do it before we make our big move to Colorado this summer (thank you, Air Force, for sending us closer to family!) or whether we will wait and do it after we get settled there. The change in elevation may be a consideration, but we will be prayerfully waiting for the Lord’s direction and watching Verity herself for indicators as to what will be best for her.

Assessments

RESPIRATORY SUPPORT
After Verity was born, of course the next thing to determine was what exactly her immediate needs were and what could be determined about her future needs. Clearly she had to have respiratory support, but we were thrilled when the CPAP and mask were removed within the first 24 hours and she moved to room oxygen through a nasal cannula. Even more astonishing was seeing her come off oxygen altogether on Day 5 and having her do so well; we are now on Day 6 and she hasn't had to go back on it!

Apnea is a huge issue with Trisomy babies. I asked the doctor about an apnea study, and she said they rarely do actual studies, but the monitors themselves are apnea studies--and nothing in all of Verity's monitoring has indicated any problems with apnea. I am encouraged every time I look at her monitors and see such regularity--perfect little heartbeat, high oxygen sats, rhythmic breathing...this changes when she's mad, lol, but even hearing her lusty cries makes me smile instead of panic. The nurses all know when Verity needs attention!!

FEEDINGS
Next: feedings. We figured she would need help eating, as almost all Trisomy babies do. She got an IV right away, followed by gavage feedings (through a tube, first in her mouth and later through her nostril--she did NOT like THAT process!). We were given a bottle of donor milk for her use, but after that was finished (a few days in), we did have to start using formula to supplement my own supply. But thankfully it shouldn't take too long before she is solely getting her nourishment from my breastmilk. The IV supplements stopped on day 2, and as with the oxygen, she didn't go back! Feeding amounts have steadily increased, and she has tolerated it all very well. She has no problems eliminating and really, really hates pooping and being in a dirty diaper! She lets us know when she's having a BM and clearly expects us to do something about it!

The last couple of days we have seen her respond to the breast, enough that my nurse today would really like to help us move toward breastfeeding first with gavage feedings afterward. I am hopeful but find it hard to be as optimistic as she is...still, Verity has defied all kinds of odds so far, so who knows?! She has latched and sucked several times during several different attempts, so while we haven't had any sustained suck-and-swallow action, all indicators are there that she CAN do this. (And for the record, she loves sucking on a pacifier!)

We have not done an official swallow evaluation; things look good, but I plan to ask if there are other more official things we can do in this area to give us the best possible chance of successful feedings.

BRAIN SCAN
We had requested in our birth plan to have a brain scan done, and that was in fact accomplished right away. Everything looked fantastic!

HEART ISSUES
We had also requested an echocardiogram, even though careful examination of her heart during the prime viewing period of my pregnancy indicated that she had no heart issues. It wasn't terribly surprising but was still rather discouraging to learn that there are, in fact, heart issues. Verity has 3 VSDs, basically 3 holes in her heart. Two of them are small and may very well resolve on their own; they are not concerning. The third, however, will require surgery before she turns one year old. This is very, very common for our Trisomy babies, and the fact that Verity has already proven to be a strong, healthy little girl bodes well for her surviving surgery. We were extremely encouraged when her heart did not show signs of distress when her oxygen was removed. While surgery isn't something in the immediate future, it could very well be a procedure that needs to happen before the military moves us in July. We would appreciate prayers for guidance in this area and that we get matched with the right team of specialists. We will be meeting with cardiologists tomorrow; so far we have only discussed this with Verity's NICU doctor (whom I absolutely ADORE) and the geneticist.

GENETICS
All of Verity's positive (and fast) progress is making us wonder if perhaps the amnio results gave us an incorrect diagnosis: perhaps, instead of full Trisomy 18, Verity may actually be partial or mosaic Trisomy 18. It is worth investigating, and if our insurance would pay for it, we would like to have her tested simply because it would help us adjust our expectations and allow us to do more research and investigating since we have focused our efforts on learning about FT18 and haven't read as much about PT18 or mosaic. Here are the differences according to www.Trisomy18.org:

Types of Trisomy 18:

• Full Trisomy 18: The most common type of Trisomy 18 (occurring in about 95% of all cases) is full Trisomy. With full Trisomy, the extra chromosome occurs in every cell in the baby’s body. This type of trisomy is not hereditary. It is not due to anything the parents did or did not do—either before or during pregnancy.
• Partial Trisomy 18: Partial trisomies are very rare.  They occur when only part of an extra chromosome is present. Some partial Trisomy 18 syndromes may be caused by hereditary factors. Very rarely, a piece of chromosome 18 becomes attached to another chromosome before or after conception. Affected people have two copies of chromosome 18, plus a “partial” piece of extra material from chromosome 18.
• Mosaic Trisomy 18: Mosaic trisomy is also very rare. It occurs when the extra chromosome is present in some (but not all) of the cells of the body.  Like full Trisomy 18, mosaic Trisomy is not inherited and is a random occurrence that takes place during cell division.

Regardless of whether Verity has full, partial, or mosaic Trisomy 18, as you can tell, we are all pretty smitten!! We love that so many people around the world are praying for Verity. I hope you will do some searching to find other Trisomy families and read about their stories as well. Many of them have become friends of ours during this journey, and I am in awe of each precious life as well as the support and love shown through parents, siblings, and the villages rallying around these precious gifts.