My soul melts away for sorrow; strengthen me according to your word!

This is my comfort in my affliction, that your promise gives me life. (Psalm 119:28, 50 ESV)

Friday, March 31, 2017

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.

Monday, March 27, 2017

When You Don't (or Can't) Cherish Every Moment

Being out in public while pregnant or herding children makes for easy conversation starters. I'm sure I'm not the only mom in the throes of caring for babies and raising children who has heard a version of this admonition: "Cherish each moment! It goes by so quickly!"

It's a beautiful sentiment, one that seems to be echoed in Scripture...

Teach us to number our days aright, that we may gain a heart of wisdom. Psalm 90:12

Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes. James 4:14

And in theory, I agree with the philosophy. I WANT to cherish each moment, truly, I do. But even with the best of intentions, the reality is, not every moment is worth cherishing. Still, time doesn't stand still, does it? And it passes all too quickly. And the more I recognize that, the more I feel the urgency: Cherish each moment!

But when I don't...when I'm slogging through difficult days (or even normal days), just trying to find the shoe or change the diaper or figure out what to feed everyone for dinner in less than an hour...does that mean I'm not appreciative of what I've been given? Does that mean I'll look back with regret at all that lost cherishing?!

I don't think so. I hope not.

Mom Guilt is a killer. It's bad enough warding off that demon in "normal" parenting circumstances.

Now we are muddling our way through a different version of Cherish each moment. And this one is hard to describe. We've heard the statistics and grieved the losses of precious T18 children, and so we absolutely understand the mentality of our days being numbered. As much as we don't like to talk about it, Verity is more vulnerable to an early death than any of our other children. Cherish each moment?  Absolutely, we want to! We want to celebrate and cherish each moment, each milestone!

But...I'm not celebrating in the middle of the night when our wee little treasure is screaming inconsolably. I'm not cherishing the moments when I feel helpless, unable to soothe her to sleep so that I can lie down myself. In a sense, we are "used to this." We've done the newborn phase, sometimes more easily than others, but still. We know the zombie-like state of living those first few months after a baby joins our family. And a good portion of what we are living these days is entirely NORMAL.

Maybe that's why it's more difficult to stop in the middle of stressful, exhausting moments and take it all in, to capture precious details and engrave them into memory--because everything feels so completely ordinary. Most of our stress is been-there-done-that. Gas bubbles. Hungry tummy. Messy diaper. Cold fingers. Things that we can "fix."

And so...I feel guilty for feeling overwhelmed and frustrated. For NOT cherishing each moment, even though I don't know how many moments we will be granted. I feel I'm not being a good steward of the gift we have been given, especially in light of the frequent reports of Trisomy families grieving a new loss. It doesn't seem fair: why are we experiencing mostly ordinary days when other parents would give anything to hold their little one again and soothe away frantic cries?

And I wonder, will there come a day (probably) when I'm the one with empty, aching arms? When I'm the one who would give anything to hold my fussy baby again? When I'm the one reciting the words Cherish each moment knowing that I'm really speaking to a past version of myself?

Meanwhile, I try harder to slow down, forget about the "musts" and "shoulds" that constantly hover over my shoulder. I tell myself--my current, tired, stressed-out self: Cherish each moment.

It's already going by so quickly...

Wednesday, March 22, 2017

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.

Tube Trauma

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

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

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

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

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

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

Thursday, March 16, 2017

Rooming In

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

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

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

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


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

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

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

Tuesday, March 14, 2017

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...


Monday, March 13, 2017

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.

Sunday, March 12, 2017

Life in the NICU

I have a whole new understanding and appreciation of parents who live through NICU experiences...AND the nurses who walk alongside them. We've known a few families whose little ones were born prematurely and spent time in the NICU; we even visited one special little girl who appeared before we moved from Idaho to Ohio. But even that brief encounter wasn't enough to empathize with her parents, not really. We were brand new parents ourselves, still trying to figure out the parenting thing, and fully entering someone else's reality was difficult.

Now, with 9 deliveries under our belts, we have quite the resume when it comes to parenting and birthing experiences, but our whole journey with Verity has definitely taken us to new heights and depths. I decided to take a break from Verity updates (since there's really nothing new to report anyway) and give you a glimpse of our NICU life, which, I'm sure, is as different from others' NICU experiences as individual birth stories, but hopefully it will give you a small peek into this world that maybe is as foreign to you as it was to me up until two weeks ago!

THE SIGHTS
Our NICU has a nice set-up, with curtained-off individual rooms. Verity's incubator gave way to her crib after a few days, which is nice and gives us a bit more wiggle room--important on those days when the whole family comes to visit and we can use every spare square inch and then some.

Here's a view from my cot looking at Verity's bed: containers on the bottom of the crib cart have extra blankets and diapers. The counter has the computer (of course) where the nurses keep track of important things like how much poo a tiny human produces (the white, circular thing all the way to the left of the counter beside the keyboard is a scale for weighing the diapers). To the right of the keyboard is a handy milk-warmer; the nurses measure out Verity's milk in a large syringe and pop the syringe into the warmer. (As a side note, I am slowly gaining on Verity...rather than just pumping for the next feeding, I actually have a wee surplus. Still working on my supply, but we are doing well for now!) I don't think you can see them too well, but at the right is where I keep my stash of labels for the pumped milk, which I put in little capped cups and stick in the refrigerator (which is ONLY for breastmilk; there is a family-use fridge in the family lounge).


Below is a view from the computer corner, so you can see the narrow "closet" on the left with a cabinet beside it where I keep important things like dark chocolate and the make-up I never bother to put on. (WHY did I pack that in my hospital bag and not shampoo?!?!) The pumped milk fridge is underneath this counter. The curtain can pull all the way around the bed IF the hooks don't get stuck. I usually leave it partially open so I can see Verity's monitors when I'm lying down...as long as I leave my glasses within reach! My stash of essential oils and random personal items are on the window ledge, along with the cafeteria menu which I have pretty much memorized. (You know you've been in the NICU too long when you call in your breakfast order and the food-service operator asks you if you want honey with your coffee, saying, "Are you THAT lady?" LOL! My reputation proceeds me...we then had a lovely conversation about how her grandparents immigrated from Germany and raise bees!)



THE SOUNDS
A description of NICU life would certainly be incomplete without reference to the noises. Everything has a unique beep...and after watching a White Rabbit episode about annoying technology, I think it would be worth pointing out to the authorities that be how truly ineffective BEEPS are when it comes to notifying people about something important. (Research shows that people tend to tune out beeps and have a hard time identifying where the sound is coming from.)

In my little NICU world, the beeps that matter most are the ones that indicate alarming changes in Verity's stats. Here is a shot of her perfect, beautiful numbers--I thank God that these are, for the most part, unchanging, and when they do change, we have learned that there is good reason for the changes (at least for us...so far...I am well aware that things can take a sudden turn, but we have not had any emergencies during our time here). The top line (green) shows her heart rate; the blue, her oxygen saturation; and the yellow-ish, her respiratory rate. If any of these numbers goes above (heart rate) or below (oxygen) a certain level, alarms will start ringing. Other babies' stats pop up from time to time as well--monitoring is happening all the time, no matter where nurses or other caregivers are. It certainly makes it easier to rest when those too-brief opportunities to sleep come my way.


You can see the three tabs on Verity's chest and belly--the two on her chest monitor her heart rate, the one on her side monitors her breathing, and the padding on her left foot covers the oxygen monitor. If any of these wires get loosened (for example, when a baby is kicking her legs or someone is trying to actually cuddle the sweet child), it sets off the monitors. You guessed it--more beeps. Oh, sweet Verity, I can't wait to hold you without all these wires and attachments!!


Probably the most frequent beeping sound I hear is when this thing (shown below) is empty: this syringe gives Verity her milk through her feeding tube. It's a pretty awesome machine, with the ability to set the length of time the feeding will take (30 minutes in our case) and then steadily pump it into Verity's belly. When a minute is left, the machine beeps to tell us the feeding is almost over. And then when it IS over, the machine beeps. And beeps. And beeps. A nurse has to come and turn it off. It's an easy job, two buttons and the annoyance ends, but a NURSE has to turn it off. Not me, the mom slowly losing her mind when she just got back to sleep in the middle of the night.


And so when that beeping doesn't stop, I hit the nurse call button...which of course only adds to the chorus of beeps. Mamma mia. The NICU is not a very quiet place, and we haven't even started discussing wailing babies, chattering guests, wheeling carts, and housekeeping services. Or phone calls from the front desk to tell us visitors or food trays have arrived.

THE SMELLS
As you can probably imagine, we are in an extremely sterile environment. At any given time you can catch whiffs of hand sanitizer, and housekeeping comes around daily to wipe everything down with their cleaning supplies. I personally prefer my Thieves hand sanitizer, which not only smells better but helps my hands not be quite so dried out. And I have a diffuser in the corner of our room which usually has Peace & Calming essential oil blend in it. (I think I need that oil the most; after I gave birth, I pretty much wanted to drink it, lol. But I'm happy with rubbing it on at night and diffusing it.) And Miss Verity likes her Lavender oil...it has now happened multiple times that when she was fussing and nothing else seemed to help, I've waved the lid close to her nose and she instantly zonked out. I even have a nurse witness, lol. Love this stuff!


THE TASTES
I'll spare you descriptions of the tastes around here, lol. But for the inquiring minds, because I'm a breastfeeding mom, the hospital gives me 3 meals a day through room service. We aren't allowed to have trays in the NICU rooms, so I get a call from the front desk when my tray has arrived, go pick it up, and take it to the family lounge to eat. I think I've tried nearly everything on the menu; most things are decent, a few are worth having multiple times. I almost always have the same thing for breakfast (hence the operators anticipating my requests, lol), but I've tried to switch it up and be creative so I'm not too bored for lunch and dinner. There are pretty healthy choices available, and I have only ordered dessert a couple of times. I'm not starving by any means, and I've had some treats here and there when family bring me meals from The Outside World. And when I'm feeling stressed and overly tired...there's always my stash of dark chocolate...

THE ENVIRONMENT
The hospital showers are located maybe 1/4 of a mile away from the NICU. down a set of stairs and through winding corridors full of bustling people in scrubs if you go during the day but quite empty if you choose to shower at ungodly hours of the night. We stop at a service desk to request a set of towels, go up an elevator, and walk down a long hallway ominously labeled "Infectious Disease Control." The bathroom looks like something from an old YMCA building, but the showers are hot with fabulous water pressure, and really, that's all one needs, especially after sleeping on a hospital cot.

A huge oversight in the NICU ward itself is only having ONE bathroom for family members to use. One. As in ONE: one toilet, one sink, one door. This can be a problem when you have multiple moms having recently given birth needing to use the facilities...

The air is dry in here, so dry my hair flies with static and my lips are always chapped despite copious use of lip balm. The temperature is constant: warm in our NICU room, cold in the family lounge. I have windows but rarely open the blinds. I have no idea what the weather outside is like, although some days ago before the threatened snow storm (that wasn't), I walked around outside on the rooftop garden and enjoyed a small bit of nature amongst the city buildings.

THE PEOPLE
By far, the best thing about being in the NICU are the people: first of all, our little Verity, who is teaching us more and more about herself, and of course our wonderful family and friends who visit us, pray with and for us, and shower tons of love and blessings on Verity.

I've met some amazing moms--a mom of twins in the NICU and a little girl; moms of preemies who have had to learn to eat well enough to go home; a first-time mom who found herself in the terrifying position of not only a difficult and traumatic labor, but also fearing for her son's life when he did not breathe on his own for 15 minutes; a brave mom who carried twins as long as possible, knowing that one of them would likely not survive (he died after 11 days but his sister lives); an adoptive mom who drove from Alabama to be here when the birth mother delivered a baby boy. I've met supportive and proud dads, two of whom make a 3-hour drive to the hospital every weekend and take personal leave time so they can be with their wives and babies. One dad said this whole NICU experience has made him a better dad and husband; his wife (my NICU neighbor and soul sister) agrees with this and says it has brought their (blended) family closer together by God's grace.

And I've met some amazing care givers, from the front desk ladies who call me "Honey" and love hearing about our family and Verity's story to the fearless, tireless NICU nurses who have given us tender loving care each and every day. I am forever grateful that Dr. A, our NICU doctor, "happened" to be on her two-week rotation during Verity's 2 weeks here; God certainly answered our prayers for a supportive doctor and caregivers.

The last two weeks have been incredibly hard in some ways and incredibly meaningful as I have caught glimpses of glory in unexpected places. I've shed some tears of exhaustion, fear, and frustration to be sure...but God's presence is oh-so-tangible even in this bustling, beeping, sterile environment. I'm grateful for the opportunity to be put in a cleft of the rock, covered with God's hand, and allowed to see even a fraction of His glory. (Exodus 33:21-23) Surely He has made His goodness pass before us and proclaimed His name (Ex. 33:19).

Friday, March 10, 2017

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.

Thursday, March 9, 2017

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.

Life With Verity: Days 1 - 9

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

February 28
Verity Irene is here!!! She's really, truly here!!! Wow, things moved quickly after we had a scare; she was transverse for awhile but finally turned and emerged with some help from a bit of pitocin. She is with her dad and big sis plus our photographer in the NICU on oxygen but doc says she's looking good overall. I'm eagerly awaiting her assessment and the wearing off of my epidural so I can join the crew. I have no specific stats, but it was about 4:10am and as Kenna predicted, she has dark hair.  Praising God I got some precious moments with Verity before her heart rate dropped and they took her from me. I am confident she is in loving, capable hands--God Almighty's, first and foremost, and the wonderful, caring team our Heavenly Father assembled in this time and in this place. Whatever happens in the hours and days to come...I know Jesus has been with us every inch of this journey and will never leave us.

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Day 2 (March 1) 
All positive trends in the NICU! Feedings increased and after a few more the plan is to stop IV feedings and solely use tube (gavage) feedings. They are encouraging me to try nursing at that point, since Verity seems able and willing to suck as evidenced by her responses to the "Momsicles" we have given her. Lots of good cuddle time today with Mom, Dad, Grandma J, and big sisters Charis and Kenna. The rest of the crew will visit tomorrow. Thanks for the prayers!

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

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


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

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

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

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

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

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

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

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

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

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

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

And an addendum to today’s update:
Oh, my heart! Not only has Miss Verity been off oxygen all day, BUT ALSO she has regained some weight (up to 4lbs 14 oz from 4 lbs 9 oz last night) AND...drum roll, please...
She latched on and sucked during an attempted nursing session!! Granted, she only sucked a few times, but she did latch at least 3 separate times!!! Hope springs eternal. :-) God is good. He would still be good even if Verity weren't overcoming so many odds, but I am thankful that He is choosing to reveal His goodness in these particular matters!

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

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

There are a couple of concerns, hopefully nothing too serious, but nonetheless things to stay on top of.
1. This evening we had a few incidents of Verity's O2 levels dipping, with sats in the 80s instead of the usual high 90s. This is the first time that has happened since she came off oxygen. One nurse posited that she may have had a bit of reflux the first time it happened; it dipped and then came back up when we lay her back down in her crib. Verity really hasn't had any spitting up/reflux issues before, but perhaps the extra milk during our nursing attempts on top of the tube feedings was too much?
2. Verity's left eye has been crusty all day, with more ooze appearing this evening. She was not thrilled about getting this checked out, but we are going to try some ointment. It's possible that it is somehow related to the tubing in her nostril, currently on the same side, but the tubing was due to change sides anyway with tonight's cares, so hopefully that will help.

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

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

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

Tomorrow marks a week since her birth!!! 

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Day 8 (March 7)
Verity is one week old today! Some quick updates because Mama didn't get a nap today...
* Back up to birth weight! 5lbs, 3 oz
* Recreational nursing continues to go well. No rush...our little girl needs to conserve her energy!
* Doc's goal for the next 7 days: continue monitoring her oxygen sats. We want to be sure her heart isn't overloaded.
* Meeting with the cardiologist scheduled for Thursday morning.
* Verity has only had fortified Mama Milk the last couple of days, and my stash of pumped milk in the fridge is finally overtaking her daily intake (45ml every 3 hours). Woot! Goodbye, formula! Grandma Irene Keist made the astute observation that perhaps the formula wasn't settling as well with Verity's tummy, which could possibly account for her fussiness during her poops! That would be fantastic if we could have a non-fussy period tonight...we will see...
* Today's visitors: family = Ted, Charis, Arden, Kenna, Zaden, and Seanin. I enjoyed snuggling my chunky boy Seanin (whom I haven't seen in person since Friday) and reading tons and tons of books from the NICU book cart to him and Zaden. Friends = Mike & Debra Trunick, who brought some stinkin' cute outfits that I can't wait to see Verity wear! Grow, Verity, grow!

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

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

Photos of Post-Birth Assessments & NICU
















Tuesday, March 7, 2017

Verity's Birth Story in Photos












Special thanks to my sweet friend Melissa of Melissa Pennington Photography 
for sharing her artistic talents with our family as a blessing to us...
and to all those who share in the joy of Verity's birth.

Monday, March 6, 2017

Our Baby Will Be Different

After our T18 diagnosis, I wrote some text that I planned to read to our younger children to help them better understand and prepare for some things about Verity that would be different. I sent the text to a friend of ours, Adam Turner, who is a very gifted freelance artist to see if by chance he would be able to put together some sketches for me. He heartily agreed; however, he got very, very ill over the holidays with a severe virus that wiped him out for over a month. I didn't want to bother him, assuming he would have his own work piling up, and simply printed off my own pages and put together a little card stock booklet to read to my kiddos.

Well. The very day that Verity was born, a package arrived on our doorstep, quickly intercepted by our 16yo daughter who had received word from Adam that something was in the mail for us. Two mornings later, as we gathered our family together for a photo session, our daughter presented us with two copies (out of a total of 25) from this box that Adam ordered to be sent to us. It's my book!! I promptly burst into tears...good thing I hadn't put on my mascara for the day!

With the extra copies, I am so excited to be able to bless other families who are going through a similar journey to ours: finding themselves expecting a baby who will be "different" and trying to explain and prepare older siblings.

I offered to mail free copies while supplies lasted to families in the Trisomy Parent group, and the response has been so heartwarming. Almost all of our extra copies are spoken for, with a clamor for a "boy version" of the book--ours, of course, uses female pronouns since we knew Verity was a girl. I've contacted Adam to see if we can make this happen. I even received an offer from one of the moms to translate the text into Spanish!

As was mentioned several times, the available literature for families in these situations is extremely limited. Would you join me in praying about getting this published on a wider scale so we can bless and encourage even more families?