A life well loved...

[Prelude to the prelude:  This was written well over one year ago at the time of death of our third little baby, just prior to my eleventh week of pregnancy.  I remember that I had more thoughts to say at the end, but I never wrote them down, and I sure don't remember them now.  So, the end of the post trails off.  But, as I titled this, our little baby is "a life well loved," so I don't want baby's story to go without sharing.]


Super Bowl Sunday was not a day like any other.  I had been overcome with a variance of yucky symptoms, and all I could do was try my best to figure out what food item I had eaten was causing me to be stricken with such fervor.  These symptoms had been ongoing for a number of days, and many seemed to quickly be gaining steam.  Super Bowl Sunday, Mike made a startling 'discovery.'  He looked me straight in the eyes and said, "I know what's wrong with you.  It's not your celiac disease.  You are so pregnant."  Immediately, this started the classic-Suzanne-is-pregnant denial scheme.  "Mike, you are so wrong.  Why would I ever  be pregnant?"  He pointed out that there had been a long expanse of time between the one thing that would indicate I was not pregnant.  "Whatever, that just happened!" was my response.  He was adamant.  I checked the calendar, counted back my dates, and said, "oh, my."  This got me thinking, but I kept making excuses.  I ultimately rested on 'no, I'm not pregnant' but then would an hour later say, 'but, what if I am?'


After an all-day dialogue that headed its way into WalMart and back home, and into the game, Mike finally jumped up at half-time and declared... "I am going to settle this once and for all.  I am going to the dollar store to get you a pregnancy test."  I gave another classic, 'oh, brother, please' response and rolled my eyes.  But, there was no stopping Mike so I stayed home while Noël danced to the show.  Mike quickly returned and handed me the cheap, not dollar store, but Walgreens brand test.  


I snatched the test and went to the bathroom to prove how right I was and how wrong Mike was.  I took the test, and there it was... a negative response.  Ha!  I marched back out and declared, "Vertz, it's negatory."  He didn't turn around and look at me.  He just said, "really?"  


"Yep, I was right... oh, wait... oh, my goodness..."  I had just looked down at the box for this very cheap test and realized it did not work like the higher-priced name brand tests.  


"HOLY ****, Vertz, I was wrong.  It's a positive.  Oh, my goodness, I just cussed.  I'm so sorry... but, holy ****"


Mike jumped up and spun around and said "you're kidding me."  


I definitely was not kidding.  I misread the test and it was positive.


Mike and I looked at each other in amazement, then hugged, then I cried, then we both thought, 'oh, my goodness.'


You see, we had come to the conclusion that we were pretty certain we were done having babies.  Our pregnancy with Noël was so rough, and then coupled with Flara's early arrival, we just felt we had hit our max of what we could handle.  Also, Noël was only 2 years old, and Flara only 6 months old, but developmentally, was like having a 2 month old baby at home.


Wow.  Mike asked me to describe in two words how I was feeling at that time.  "Anxiously excited" was my response.  We did the math, and came up with an around- October due-date.  With my classic vertical c-section with Flara, we knew there would be little to no chance we would make it full-term.  So, figuring on a maybe September arrival, our babies would be 2 1/2 years old, 1 year old (developmentally like an 8 or 9 month old), and newborn!  Wow.  But, we assured ourselves that God is in control and that God was giving us this baby for a very specific reason, so we weren't going to worry about how we would handle anything, or find the patience, or be effective parents.  We were just going to keep on trusting.  


An interesting note to add to our decision to stop our family at two kids... I had also just maybe a week before said to Mike, "This might sound really strange, and I am probably completely crazy, but I kind of want another baby.  And, I could take another baby now."  God must have been preparing me for the news when it did happen.


It took me nearly a week to call my OB and share the news.  Thankfully, he was kind enough to take the phone from the receptionist and talk to me and pray extensively with me.  He reminded me that God is fully in control, and that it was no mistake that this baby was being placed into our lives at this exact moment.  It was a good reminder and confirmation that God was going to take care of us.


We scheduled our first visit for lab work.  All of those tests came back perfectly.  We repeated the labs and had an ultrasound a half-week later.  We were still too early in the pregnancy at that point to be given a due date, or to see a heartbeat on our baby, but our labs looked perfect again in comparison to the tests from a half-week prior.  We scheduled another ultrasound a week out with the hopes that we would be far enough along to see our baby's little heart thumping along.


And, there it was!  Our ultrasound showed a baby growing like baby should, with a nice steady heartbeat.  The baby measured correctly from our last dates so we were given a due date of October 14th.  We were given three pictures of baby.  Two of them were labeled for us.  "Hi, Mom and Dad" and "Hi, Noël and Flara."  We were really excited.  


We discussed what the risks were going to be with the quick turn-around in pregnancies, and when my vertical c-section scar would be of concern.  Surprisingly, our OB gave us the go-ahead to be 'normal' OB patients for a while and return in a month, rather than following our typical high-risk weekly to bi-weekly schedule.  Wonderful!


Over the next month, my stomach continued to QUICKLY grow.  I was surprised how fast the 'little' bump was expanding, and realized it would be hard to hide it for too long.  I suppose that's the beauty of back-to-back pregnancies and classic c-sections, right?  But, I sure didn't mind, and I was so excited for the littlest Veitz baby to be growing.  We were mulling over names, and laughing about being fairly certain we would have a third little girl.  We just couldn't wait!


Fast forward to our next visit.


This Monday, March 22nd was our next regularly-scheduled appointment.  We didn't have an ultrasound scheduled, so I knew it would be a quick visit to pick up our heartbeat, weigh me, and check a few other things.  I kept telling Mike all weekend that he didn't need to go because it would be so quick, and that it would be easier for the girls to stay home.  At first he agreed, but then as the weekend wore on, he decided he would come.  That morning, I still assured him that he wouldn't need to ride-along, although I would love to all be together.  Nope, he was coming anyways.

We arrived in Knoxville for our 2pm appointment a bit early.  Noël sat in a chair quietly like a good girl, and grabbed a few books to read.  Quickly, we were called back.  I stepped on the scales, and was a bit shocked that I was the same weight from a month prior, and possibly (I couldn't remember) a pound lighter.  "Hmmm, " I thought, but I quickly dismissed the idea because I lost weight for months with Noël, and struggled with Flara as well to move forward with the pounds.

I moved to the next station and peed in a cup and had my blood pressure taken.  I was 10 weeks, 4 days, so I wondered if we would pick up a heartbeat on the little doppler machine.  The gal who took my BP must've thought the same thing because she asked the main nurse the same question.  Her response was, "well, sometimes, but Suzanne is such a little bitty thing, you'll get it."

As I laid down and the gal began scanning, she kept picking up my heartbeat and couldn't locate baby's. It didn't bother me because I had remembered similar difficulties at later stages with Noël during our many hospitalizations.  As the scanning went on and on, I kept looking at Mike with a bit of a sense of doom.  He would smile back, so I would look up and stare at the ceiling tiles.  The head nurse came in and asked if she had got it yet.  "Nope."  So, the main nurse went and fetched a different doppler that she said sometimes worked a bit better.  This time, she scanned me, but she also wasn't finding anything.  "Well, let's just ultrasound you really quick to visualize your baby."

I was feeling pretty grim.  Mike was still smiling.

As I laid down for the ultrasound, I kept telling myself I wasn't going to look at the picture.  But, then, like any person passing a wreck, I had to peek.  There was our little baby, sweetly laying on baby's little side, beautiful spine intact, little arm buds... still a tadpoley appearance....  no heartbeat.  I gasped.  Mike strained his eyes and said, "that shows 8 weeks, 5 days" in a questioning way, then suddenly grabbed my shoulder, and then stopped.  I slapped my hand to my face and quickly covered my eyes.  The nurse practitioner walked in, looked, and said, "let's do a [more instrusive] scan really quickly."

We did that scan, and still the same.  We checked for blood flow.  My body lit up in reds and blues, but sweet little baby remained motionless, heartbeat-less, and gray... no blood flow.  "Oh, my gosh" was all I could say.  I covered my eyes again and started crying.  Silence filled the room.

Mike asked if we could pray, and the practitioner offered to pray for us, but Mike wanted to say that first prayer with us.  With me still on the table, Mike holding my shoulders, the ultrasound tech holding my other shoulder, the practitioner holding onto my knees, and me still grasping my face and sobbing, we prayed that God would carry us through such difficult times and that we would trust Him with the news we just learned.  It was a hard prayer.

I cannot describe the very instant I actually realized my sweet little baby had died.  I felt numb, I felt the room spinning, I felt my breath leave me in a quick gasp, fears, sorrow, extreme loneliness, a myriad of emotions, confusion... and, yet, peace.  Peace that only a loving God could provide in the midst of terrible, painful news.

I was silent.  We walked out of the ultrasound room and got the girls from the nurses.  And, that was it.  Our belongings were still in our exam room; a life interrupted.  We didn't continue the exam as we should have.  We were told our options and told to go home and take our time making a decision.  I remember thinking I felt bad for the office staff for having to handle bad news like that so regularly, and also how impressed I was with how compassionate they were to us.

Quietly we walked to our car and buckled in the girls.  I don't remember what we said.  I just remember numbness.  My thoughts were not clear.  As we were heading down the highway, I saw a McDonald's offering 2 for $3 filet-o-fish combos.  I thought, 'well, now I can eat a filet-o-fish.'  Then, I remembered it was not baby who made me unable to eat McDonald's.  It was my celiac disease.  I think confused was probably the best descriptive for the thoughts that passed my mind.

Probably before we arrived home, I made the decision that I wanted to have a D & C.  I was so fearful of going through losing baby at home.  I was fearful of the cramping, fearful of seeing the blood start.  It was too late to call the office back and let them know my decision, so I decided to call first thing in the morning.

I couldn't sleep that night.  I was afraid still of seeing blood... to me, that would validate the truth of what had happened to me, and I didn't want to face that reality.  I was up, down, up, down, all night... pacing, thinking, questioning... trying to pinpoint what went wrong.

But, I know I didn't do anything wrong.  I kept trying to rationalize the death from a nursing perspective, which would help, but then I would have the awful thoughts of 'was it this' or 'was it that.'  I counted back the dates on the calendar to see the day my baby stopped growing.  It was an ugly, vicious cycle of destructive thoughts.

Morning finally dawned, and I called the office on my way into a work meeting.  I couldn't pay attention, and I kept replaying the day over and over in my head.  I held my phone waiting for the call back to let me know if the covering OB (my doctor was out-of-town for the week) could fit me into his surgery schedule that day.

By 1:30 in the afternoon, I figured the D&C wouldn't be happening that day.  I was starving from having eaten nothing in anticipation of surgery, and I was getting fidgety.  Then, my phone rang.  It was the head nurse calling me back.  "Suzanne, are you still in Knoxville?"  "No, I'm back home."  "Well, we just got word that we can bump you in for a 3:00 surgery, but you'll have to get in your car and hurry here.  Is that okay?"  Of course, Mike and I jumped up in a fury and began grabbing things to drop the girls off with friends and get me whatever I would be needing for my surgery.

It was a sad drive, like heading into your doom.  To me, this was final.  Up until that point, even though baby was no longer alive, my sweet little baby was still with me.  I tried to not think about it.  This would be my last moments pregnant, and I didn't want it to end.

We arrived at the hospital and silently walked into the admitting department.  The waiting room was full of people, but thankfully, one girl at the desk took us in and took us to a closed office, checked us in, and bypassed a lot of the waiting.  We went to have labs done, came back, then were walked to the surgery department.

Thankfully, everyone was extremely sympathetic to the situation.  Several nurses quietly told me that they, too, had lost babies... and had never forgotten, forever imagined what 'could have been,' and struggled that others could  not understand the loss that a momma feels.  It was so true.  Later, as I was retelling Mike the things these kind people had shared with me, I stopped and said, "you know, Mike, I think this is the silent agony of women."  Yes, silent agony.  So many have experienced it, and yet so many other people are quick to say, "well, it was only x- amount of weeks" or "just a miscarriage" or any random non-sympathetic thing they could come up with.

As I mulled over my own loss and thought about all of these moms, I began to feel really apprehensive and doubtful and I don't even know what.  In perfect timing, the nurse walked in and gave me my first of two doses of versed.  Ahhh...  Even though I was still really sad, I could more effectively talk to Mike about what we were experiencing.  The finality of it all was really weighing on me, and I was struggling with the thoughts of waking up from surgery and for the first time in nearly eleven weeks, being childless.  Ugh.

Being my usual stoic self, I tried to suppress my emotions and be chipper as I was wheeled back for surgery.  I tried to avoid Mike's eyes every time we talked because I knew the sorrow in his eyes was a reflection of the sorrow in my eyes.  I tried to be my usual upbeat self to the staff and was having nice conversations... then began to drift off...

I woke up, and I remember thinking, "wow, that was amazing sleep.  I really needed that."  I could hear distant conversations, but nothing really made sense.  I heard a funny conversation, and I began to chuckle a bit.  "Hey, you're not supposed to hear that.  You woke up really fast."  I was really confused. Who was talking to me?  Where was I?  I saw bright lights and suddenly realized where I was and why. Instantly, hot tears began falling down my face.  I pulled the cover up over my head and silently sobbed. All I wanted to do was get back to Mike.  Immediately.

A nurse walked over and brought me a Kleenex.  She had a really sympathetic look on her face.  Silently, she did her job and told me she'd quickly get me back to Mike.

As I was wheeled back to my prep 'room,' which was a curtained off area, I caught sight of Mike's eyes. I quickly glanced down and half smiled at him.  We  both sat in silence.  Mike reached over and grabbed my hand.  I think we were both just too afraid to look at each other and acknowledge the end of our pregnancy.  I don't know who spoke first, but I remember some small talk.  We had a nurse who took care of us when I went into pre-labor with Noël, so that was a good distraction.  I realized I needed to pee... desperately... so our nurse helped me up and to the bathroom.  As I was in the bathroom, I looked down and realized that my bump was gone.  Gone.  Already.  I gasped, then started crying.  I walked back dazed to Mike and pulled my gown and said, "look."  He didn't look up at me, just silently said, "I know.  ---- said that would happen and it would be really hard to realize."  I sat down.  Angry.

We were discharged to leave after that, so we slowly walked out.  I was offered a wheelchair, but I refused.  A different nurse walked with us, then sat with me while Mike went and brought back our car.  While Mike was away, she shared that she had struggled with infertility, then lost the two babies she had conceived through in-vitro fertilization.  She told me she knew how hard it was to go through this.  She seemed to be another person placed in our paths by a loving God to further show that He loves us.

I realized when I climbed into the vehicle that I was starving, so we went to the Taco Bell next to the hospital.  I had to pee... again... so we went into the restaurant.  Mike ordered the food while I slowly made my way into the bathroom.  I met him as we were walking out.  He asked if I had seen the elderly African American woman who had waited on him.

"No, why?"
"Well," he told me, "she said, 'isn't it a beautiful day?'"
Which it was... I had noticed the perfection in the blueness of the sky and the birds chirping and the puffy clouds and the warmness of the sun... more than usual... a life that had screeched into slow motion.
"Yes," Mike responded.
"And, isn't God good?"
Looking up, Mike said, "absolutely.  He is so good."

It always amazes me the people that God will place to cross paths with us.  I've never had anyone say something like that at Taco Bell... and what a beautiful declaration it was.  She had no idea what we had just gone through, but she was rejoicing in our Savior.  Mike and I prayed, then begin eating... still tearfully, I acknowledged that God is good... so, so good.

Therapy updates

[My apologies-- I have not read through to check for any grammatical errors, so please forgive anything you find!]

Physical therapy is continuing to be a success for Flara.  We've been working on getting her to sit on a little swing-- to help with her vestibular disturbances (CLICK).  She downright refuses.  This past week, I was able to coax her onto this lovely barrel-shaped device and actually move her ever-so-slightly.  Of course, she had to be distracted with a baby doll, I had to be riding with her, and when I started moving her beyond about an inch-- seriously-- she bucked.  But, we considered it a success!  The amazing thing is that later in the week, we were visiting with friends from out-of-state, and I had taken my girls and two of their little ones to the playground, and Flara grunted her want to get into the baby swing.  I had my doubts, but I sat her in and buckled her, and she smiled!  I then moved her verrrrry little, and she smiled even more!  She gave a couple of claps, then decided she could take no more.  I was so proud, though!  It's all baby steps, but we'll take it one at a time.

We now have behind us the speech evaluation and her swallow study... and, more labs.  This week was rough.  Speech evaluation...  eh.  That was interesting on several different levels.  One, Mike and I expected Flara to score poorly, but we did not expect her to score as poorly as she did.  Two, an interesting conversation between the therapist and me ensued.  Three, the report given to our physical therapist detailed not only Flara, but, me.  The swallow study?  Wow.  Labs?  Yuck.  Fasting for a child who cannot communicate or apparently understand-- horrible.... as I loudly exhale.

During the speech eval, Flara did not do much.  Or, say much.  Or, answer much.  To me: normal.  "Normal" in the sense that it is the everyday Flara that we live with.  I could sense the concern in the therapist.  I could see it in her eyes.  She told me that children typically do worse on the eval than they do at home, simply because it's out of their comfort zone.  I very honestly told her that this was spot-on accurate for how Flara is at home.  I was not going to try and inflate Flara's abilities or deny that she has problems.

The results given showed that Flara scored in the tenth-percentile for receptive language-- what she can understand.  For her expressive language-- one percent.  One percent.  Combined, her overall score is two percent.  The therapist's face said a bit to me that she didn't want to tell me how bad it was... she said it with hesitancy.  I just sat, shook my head, told her that, "well, it is what it is and now we know we need to work even harder."  I agreed that it was worth the drive to come twice weekly and I would continue on in learning ASL at home.  She said that would be good.  Our conversation turned to how we have gone to the same OB/GYN, but, with her current pregnancy, insurance dictates she delivers at her place of employment.  She said she has really high expectations, so she's a bit nervous.  The conversation led into talking about prayer, faith, trusting... she says, "yeah, I really, really love Dr. V, but, well, you know because you go to him, but the prayers can be awkward."  I said, "really?!!  Gosh, I love that about him.  That's what drew me to him in the first place.  I had just started at my new job and was taking care of triplets.  He walks in to visit "his" babies, walks over to me, asks how they are, then declares, 'well, praise Jesus they are doing so well.'  I went home and told my husband, and remember saying, who ever says Jesus anymore?  He was really sincere.  So, I found out who he was, then didn't hesitate to call him when I found I was pregnant with my first baby."    

We finished up our smalltalk, agreed again upon our plan of care, then went and set up our next appointment. I thought it all went well.  Honestly, I did have one very brief moment where I did think to myself that I could cry-- just a teensy bit-- because I just felt very badly for little Flara-- but, not because I felt overwhelmed by the results.  I actually felt a smidgen of relief because the results explained a lot to me about certain behaviors we have been experiencing from Flara.  I preceded the results on my facebook page with, "Glad my hope is in Christ alone..." because that's very honestly how I feel about it.

Apparently, though, the speech therapist told our physical therapist that she was worried about me because my responses were "completely inappropriate."  Can I say that that bothers me?  ... Because, it does.  It's not on the level of caring what her opinion is of me, it just bothers me because I really mean it when I say my hope is in Christ.  My response was perceived as I'm not dealing with the news well, I'm in denial (did I not say that I was very honest that Flara was acting exactly how she does at home so as to not inflate her scores?), and that I am failing to realize how big of a "problem" Flara has.  I had told her, too, that we've had so many really icky results over the past nearly 20 months, that nothing comes as a shock anymore.

Your daughter is in early stages heart failure.  Okay.  We can remove now the diagnosis of heart failure.  Your daughter is very likely not going to survive.  Congratulations, you're going home.  I'm really sorry, your daughter has had undiagnosed hypothyroidism and very likely can have brain damage.  It appears her body has done a good job of compensating so far, so it appears we caught this before it affected her brain development.  We're fairly confident Flara had a bout of missed NEC, and we're expecting to find that she has a very small portion of bowel that has died.  Great news, the tests came back completely normal.  Your daughter failed her hearing test on her low tones, and barely passed in the other areas we test.  Well, she actually managed to pass her hearing test, although she is barely on the line for passing.  We'll see you in one month to repeat everything.  Your daughter's brain hemispheres are not communicating; she does not know that her body exists below her neck.  Wow, great job, Flara is really coming along-- there's no reason she shouldn't be able to ride a bike, hold a pencil, and run across a playground.  

Need I say more?  I could keep going, but it's beside the point.  The course of a former micropreemie seems just as labile as their days in the NICU.  What can I say about it?  It's hard, but I have learned so much through this.  I've said it a billion times, but one of my biggest lessons is that God really, truly does carry us through our toughest times.  The peace I have experienced when it seems I should be most out-of-control is inexplicable.  But, it's there.  I don't grasp onto anything I'm told as being the "definitive" for Flara.  I don't know what God's plans are for my girl.  I just don't.  I can't.  All I can do is keep trusting Him with my life, her life, and all the little details in the middle.

I did repeat over and over again on my drive home my favorite verse:
     "Rejoice in hope, be patient in tribulation, be constant in prayer."  Romans 12:12

Always a good reminder for me, even now.  =)

Swallow study...  we did that on Thursday.  Flara had to fast, which made for an interesting morning.  After that very-long-winded explanation above, I will briefly say that we have major frustration issues with our FlareBear.  She has gone from our "Eternal Optimist" and "Eternal Sunshine" to a very often angry, screaming baby.  It's quite sad--  but, it appears it's because she cannot communicate her wants or needs to us.  =(  So, add that anger to a fast and the result is a bad situation.  Flara was out-of-control for the study.  One, she was scared beyond words-- she was like a frightened horse, flaring her nostrils, head pulling back, whites of the eyes fully exposed-- two, she was starving.  She wouldn't take anything she was given, so she had to have everything syringed into her mouth as she was screaming.  Her mouth would be so overstuffed, she would finally swallow... but, she had to swallow ten times for each texture.  The decision was ultimately decided to stop before she was tested on full solids because she was so upset.  What could be gathered appeared to be normal, but she did aspirate a few times, but during full-out screams.

We followed that with labs.  Flara has been in the lab enough to know where she is the instant we arrive, so she was screaming and twisting before we made it into the room.  Thankfully, the draw went quickly, and we managed with only me holding her down.  Typically, Flara takes three people to hold her down, with the exception of the "fluke" draw the prior visit where she sat quietly.  I'm still waiting for those results-- I expect I'll hear back Monday or Tuesday.  Her labs are a follow-up on Flara's last increase in thryoid hormone.

Once we were done, big sis excitedly led us to the gift shop to buy candy.  I've made this our tradition for all of our Children's visits.  Finish up the tough work and get a little break.  Both girls picked their favs-- Noël wanted a Snickers, Flara her plain M&M's.  Flara latched onto a little clearanced Easter toy for a dollar, so I let her get it, then Noël found a pink eraser puzzle horse that she liked.  Another dollar beauty!  She then dug to the very bottom of the bucket (it was large), knocking little boxes everywhere.  She kept saying, "oh, sorry," but kept digging.  I wondered what she was doing, but at the bottom she found another little pink horse.  I wondered why she wanted two (I had tried to show her all of the other choices), but after picking up our mess, she marched over to the desk, handed over her finds, then pulled out her money.  She took her little yellow bag, then reached in and pulled out one of the pink horses.  "Here, beebee.  Poor beebee."  Once again, my compassionate little Noël used her money to buy her little sis something to brighten her day.  Ohhh, I just love my little girls.

Noël has been a huge help in many ways.  I'm really thankful for her eagerness in learning signing.  I haven't counted how many signs we're working on now, but Noël has most of them down and has been using them.  Flara has been picking them up quickly, too!  I've been so tickled- she actually signed back, "dog," "light (on)," and "milk."  Mike and I have noticed a marked difference in her, too.  She has been laughing again, even yesterday after getting home from the hospital, and, playing again.  That's not to say we're still not having screaming fits-- I still feel like I heard an entire day's worth of crying, but she seems to be recognizing several of the signs that I have been doing with her, so we are starting to move towards a point of better understanding.  Two weeks' worth of training has given us encouraging results.

We are now awaiting an occupational therapy assessment, although it's already been determined she does need it.  With the swallow study behind us, we can now do the eating portion of Flara's speech evaluation.  It'll be nice to get her taught how to chew food (instead of holding it 'til it dissolves away) and hopefully to pace herself, so she's not stuffed like a hamster on a week-long journey.  Mike has given her the nickname, "Stuffin Muffin," which really makes us chuckle, but we eagerly look forward to living a day without having to finger sweep her from frequent choking.

Please do continue to keep our little Stuffin Muffin in your prayers.  It's been a long and weary road for all of us.