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.

Bumped to the Front

Thank you to our Physical Therapist!  I received a phone call today that little Flara gets to start her Speech Therapy next week!  We have to go to Children's Hospital and get a swallow study done before her speech assessment.  The last swallow study she had was shortly before leaving the NICU, which was 16 whole months ago!  It's hard to believe that much time is actually behind us.  Now onto improving her language (well, maybe starting)... she just started doing the "goo goo gooo" sounds, although she does still have "hiiiiii, mom mom, and dada."  And, of course-- improved eating!  

For a morning that started with such good news, the rest of the day has been yuck.  We have been in the midst of tornadoes and bad weather since sometime past 4pm.  It's 11pm now, and we still have at least another hour.  Outdoors got to looking sooo scary, I finally took the girls and the Dogg into shelter in the girls' closet (our only interior space in the house!) just before 8pm.  We watched Barbie movies for two hours and endured Dogg's breath (the room was getting stuffy) before finally tumbling out around 10:20pm.  We just couldn't take it any longer!  As I was putting the girls to bed, we were pummeled by hurricane-force winds and rain and baseball-sized hail!!!!  I cannot even describe how loud that was!  Dogg was running and ducking and dodging like he was being fired upon from all directions... poor boy.  Flara was screaming.  Noël went to the windows and was "catching" the storm in her hands to give to Momma to get rid of it.  She would say, "Nornado, go AWAY."  I put the girlies to bed and left their closet bunker intact, and I'm sitting out on the couch keeping watch on the news for more tornado activity.  Blah.  I'm so very thankful we're all okay... I am so terribly saddened to hear how many lives have already been lost in this tornado outbreak.  Many prayers have been going out for the mid-South down to the deep-South.

Physical Therapy

Little Flara started at a new Physical Therapy locale last week.  We were on a break from our previous place due to complete noncompliance from our little girlie.  Mike and I figured Day One at the new place would be our "make-it-or-break-it" visit.  I was a bit nervous in going... we had even rescheduled our first visit due to Flara being sick the day she was supposed to go and took her to our peds instead.  Day One, to my utter surprise, went GREAT!  Our therapist assessed Flara by talking me through everything, rather than by her touching Flara, with the hopes that Flara would warm up to her.  It worked-- Flara seemed to just think Momma was playing with her, although in a new environment.  I'm so thankful-- even as we waited in the waiting area, Flara stood big-eyed, wringing her little hands non-stop, and refused to move (until Big Sis went, took her shoulders, and guided her back to me).  She's so pitiful.  Flara's initial assessment placed her functionally/ developmentally as a 13-month-old, even though she is actually 19-months-old.

Daddy took Flara to therapy today while I was at my own doc's appointment.  As I was waiting to be picked up, Mike texted me a picture of Flara and Noël-- Flara had walked over to another therapist working with a little boy with autism, and sat down and played with them!  Noël went, too, and they all worked on puzzles together.  Quite cute-- and, quite amazing!  Mike said she really did well with our regular therapist, too.  Such a relief!

Her therapist did express some concern over Flara's perception of touch-- she has diminished senses.  We see this most prevalent during eating:  Flara over-stuffs her mouth 'til she's full like a hamster.  Then, she chokes... and, chokes... and, Momma and Daddy do very frequent finger sweeps to rescue her.  Apparently, she is overstuffing because her little nerves aren't registering the feeling of food in her mouth, so it takes her a mouthful to get that feedback.  She's fifth on a waiting list for speech therapy, but our therapist is trying to get her moved to the front of the line.  Worried about her frequency of choking, she even suggested we might cut back on her solids.  The girl loves her food sooooo much, though, I think I'm going to just feed her a single bite at a time, rather than giving her a plate of food.

We have also been encouraged to really start using signs with Flara to facilitate her language development.  I'm using "Signing Smart with Babies and Toddlers" at the recommendation of our TEIS instructor.  From what I've read, it seems like it will be a good system.  I had only exposed Flara to the Baby Einstein videos for signing, but this system allows for more conversational signing.  I'm actually pretty excited to be learning, and today marked my first "official" day of signing with Flara.  She's been watching very earnestly, so I'm hoping she'll pick up on it all.  =)

Updates

Flara met with a new endocrinologist this week.  We had been seeing a doctor in Chattanooga, but with her 'crisis' period over, we were able to switch to a doc in Knoxville... much more convenient.

Looking over her records, our new doc said that Flara had a much thicker file than most adults he has ever seen.  We just wanted to make sure each family member stays consistent.  ;)  After reviewing many of the pages and quizzing me beyond my now-lagging memory, he concluded that he agreed that Flara appeared to be more 'impending' in her hypothyroid issues, but he had concern that she might have pituitary issues.  His explanation was that, typically, if brain damage has occurred in one area, then the injury can reciprocate in another area, which often occurs in the pituitary... I think... I'm pretty sure that's how he explained it...  Anyways, it was a combination of her history of a brain bleed, her not-fully-thickened corpus callosum, and her newly-discovered lagging cerebellum.

He sent me over to Children's for labs.  He was checking her current thyroid hormone levels and functioning, as well as her water-retaining hormone, and her pituitary functions.  He called me the next morning to tell me that her pituitary for now is operating normally, her water-retaining hormone was normal, but her thyroid levels were slightly down.  So, he told me the changes in her Synthroid dose that he wanted implemented, and then to repeat levels in one month.  And, at some point, he would like to have an MRI done of her brain, mainly to visualize her pituitary.

In a nut-shell, this all confirms the 'impending' state of her thyroid.  When she was smaller, her thyroid was producing enough hormone to cover her body's needs.  When we discovered the problem, her body was still able to keep up, but other hormonal levels were elevated as her body was compensating for the shortfalls.  Now, even while receiving hormone replacement, her body size has finally outgrown her thyroid's abilities.  Praise God it was all discovered before her brain was adversely affected.

We also had an update on her heart a couple weeks before.  Our cardiologist opted out of doing an echo.  She was too fidgety and fussy, and he felt good enough from what he 'saw' on her EKG, her blood pressures, oxygen saturations, and what he could hear...  the murmurs were diminished.  Plus, we were able to report that she has been without symptoms for the past several months.  So, follow-up in a year!

We're on a waiting list for speech therapy.  We're switching to a new location for physical therapy.  This will start this upcoming Tuesday.  We had taken about a two-month break from our prior PT locale-- Flara was having a terrible time and was uncooperative.  Flara's physiatrist (the doc who evaluates her brain functioning and developmental state-of-being) thinks that Flara was pushed too early, and so she has formed negative associations that she has been unable to break.

She will turn an amazing 19 months in three days.  She's now 23 pounds and measures 30.75 inches tall.  Big girl!

Noël remains drama-free.  =)  She does have her fair share of ear infections, strep throat, and random pukings (as in, this week, everywhere... poor girl)... but, otherwise, nothing has happened that has raised concern for momma and daddy.  Thank you, Lord!  She keeps herself busy with her birds... we have three nests on our little quarter-acre plot, has been tending to her strawberries, and picks flowers from those she planted-- on the last day of winter!-- daily.  Needless to say, but momma has stayed busy until this week fussing over the flowers to keep them alive during cold spells and frosts by covering them at night and strategically placing jugs of hot water to warm the air around them-- and, fussing over the birdies.  Our bird house with our Eastern Bluebird babies keeps coming apart, and I have done countless repair jobs with duct tape (HUGE disappointment) to keep it all together.  I thought duct tape was practically permanent?  Not in these rains....  When we're not outside, Noël is busy with her cooking, dressing up as a princess, and dancing.

Flara, the wood sprite... That girl is so spirited.  Our pediatrician even commented this week that, "well, Flara is... Flara... and, you have.... well, two extremes in personalities."  She keeps us laughing.  She always has a sparkle in her eyes to let us know she's up to something.  She does things... to bait us... and, we fall for it.  She loves it.  She 'got' momma so good this week, that I screeched the SUV off the interstate, slammed it into park, threw off my seatbelt, and was diving into the back to rescue her...  to discover her giving me a look like, "I sure got you this time, mom," then giggled at me.  What did she do?  Well, she feigned choking-- she went from flopping her head back-and-forth violently, quickly, then flopped her head down and let it bob with the bumps on the road.  She did not respond to my voice.  Yeah.  All an act.  Once back on the interstate, she tried her 'trick' again a few minutes later.  Momma did not fall for it that time.  She was always known as a opossum back in her NICU days.  This took it to a whole new level!

And, Dogg remains Dogg.  He had a rough week last week.  We were preparing our hearts for his death.  =( Whatever he got into, whatever had sickened him, seemed to pass after four rough days.  During those days, I had to keep close watch over him because he was trying to leave.  He constantly was asking to be let out, would walk down the stairs, stand on the sidewalk and lift his nose to the air, then try to go.  Not cool.  For the first time in his life, he refused to sleep in the bed at my side.  He was guarded, wanted no one around.  Normally a gentle dog, he bit me and bruised me on three separate occasions.  The weekend was long and I was anxiously awaiting Monday to come so I could get him to the vet.  But, he woke up Monday morning with a different look in his eyes and a slight pep back to his step.  Huge sigh of relief.  He's back to his normal antics, so all appears fine now.  : /

March passed us by.  Although known by practically no one, it brought about the one-year date of losing our third little Veitz baby.  Sad times.  We were nearly 11 weeks along when we learned that sweet baby's heart was no longer beating.  I wrote a long, long post on it, when it happened, but saved it to draft and never published it.  Perhaps, one day.  The beauty of it all is the peace that God has given me in such a heart-wrenching loss... even from the day 'it' happened until now.  God's ways are perfect, often not understood (for me, at least), but, constantly display how good He really is to me.

Complaint of the Day....

My months are always the same.  I have to sort out what to pay first, what to pay late, and which medical bills to squeak in to make my month complete.  The order changes month-to-month, but the end result is that everybody gets paid every month... I've been doing this for three years now.

Friday, I spent the entire night, as in up 'til 0500 hours, working on sorting out who to pay and when.  Already a bit late, I opted to pay one of my smallest student loans.

Sunday, today, I receive a phone call.

Dude: This is so-and-so from Not-so-Nice-Student-Loan Land.  I am calling because you are late on your January payment of 50.22.  Although this advances your due date and adds January's installment onto February's installment, I would still like to have you make a payment of part (as in January) or all of your amount due (including what's due February).

Me: Yes, I realize your computer shows that I am late, but my husband was paid on Friday and I paid everything at some point through the night on Friday.  I know, it's the weekend, and thus the system has probably not processed my payment, but it is in there.

Dude: Oh, great!  And, where, miss, did you make this payment?

Me:  Online, via my online account.

Dude:  Excellent.  The system does show that we have received a pending payment to your account posted on Friday.  I just needed to confirm that the payment was done.

(My thought... Annnnd, you needed to call me with this knowledge why????)

Dude:  For the record, so that I may make a notation, we would like to know exactly why you were late on this month's payment?

Me:  Well, I could list several reasons, but I'll give you the main reason.  I delivered my daughter extremely premature, and now we have a child whom the State considers disabled.

(Long pause... wonder if Dude has left... Still a long pause....)

Dude:  Ummm, okay.  Well, that is certainly understandable.  I will make note of that in my computer.  Now, I do need to ask as you have a payment coming up in February (at the END of February, mind you).  Will you be able to make your February payment, or do you anticipate more hardship?

Me:  Well, sir, in all honesty, I don't plan my life by looking ahead to the next month anymore.  In my family's situation, we focus on getting by a single day at a time.

(Long awkward pause repeats itself).

Dude:  Ummmm, well.  Ummm, that is certainly understandable (heard that before).  You are definitely in a situation that is difficult.  I will just make a notation of this in my computer (yes, I know).  Okay, miss, that is all I need for today.  In the meantime, you may receive more phone calls from our representatives until the payment actually is completely processed.

Me:  Yes, thank you.  You have a great day.

Dude:  Oh, yes.  Thank you.  [click]

*****************************************************************************

Today was just one of those days.  Feeling emotional, drained... been in lots of thoughts.  That phone call definitely did not accentuate the positives.

I know due dates exist for a purpose...including much more than due dates for bills.  Geesh.  Talk to Flara about due dates existing for a purpose.  It just seems that sometimes the (unintentional) insensitivity of others really slaps the reality of a situation into my face.  Perhaps it's because it followed a week that involved stitches, possible hearing loss, an upsurge in the thyroid issues, a baby so miserable because she cannot go potty, continued expression over concerns with her lack of vocabulary...  Who knows.  After a week of feeling surprisingly upbeat and positive about all of the newest developments, today was a major low.  Dude's phone call surely did not help.

Thankfully, the day was/ still is beautiful.  72 degrees and sunny.  It surely sparked life back into my doldrums.  The girls and I headed out to play after Mike went to work.  Although it was nap time and she was visibly distraught, I decided to keep the FlareBear up and get her out to get some God-designed Vitamin D therapy. Our outside time was spectacular.  We ran countless times around the yard, pseudo-climbed trees, dug in dirt, ate dirt (okay, just Flara), played chase.  Three hours passed by rather quickly.

In the midst of our play, complaint no. 2 filed.

My neighbors sat out a very nice metal swing set at the curb with a 'free' sign attached.  With Mike working, I could not drag the thing across the road with two kids in tow, so I decided to walk over and ask the neighbors if they would hold onto it 'til Mike came home.  I have the FlareBear in my arms, and a bouncy Noël at my side repeating, "wow wow swing,  wow wow swing."  She really wanted that swing.

I called Mike to double check that he was okay with the idea.  He says yes, we walk across the road, two male teens whom I have never seen before walk up the road.  The get to the swing about 10 steps ahead of us.  They jump up onto the swing, jump down, shake it.  Pick it up.  Look at me.  I know they hear little Noël still chanting her excitement at getting a swing.  Pick up swing and drag it into the road.  I groan.  I ask, "are you guys really going to take that swing?"  Teen One wheels around and says with attitude, "well, yes, ma'am."  Noël loudly says, "no, swing, no swing.  Wow wow swing."

Momma chokes back tears.  I know they heard her.  They were still within steps of us.  We're still in the middle of the road.  Noël looks up at me with her little face smooshed up like she could cry.  I tell her I am so sorry, but the boys decided to take it.  She tells me they are mean boys.  Yes, momma agrees.

We talk to our neighbors a bit, then go home.  She quietly tells me at home that she really wanted the swing.  I tell her quietly that I know how disappointed she is and that momma's disappointed, too.  I remind her that this is a good lesson that sometimes in life, we will be disappointed.  I tell her, too, that God sees all that we say and think and do, as well as what others do.  I tell her God knows how much she wanted that swing, and he knows the heart condition of the boys that caused them to take a swing from a sweet little girl.  She looks down and tells me, "mean boys" again.  I tell her they did not do something nice, but God is still in control of everything.  I ask her if she knows that it might not seem fair now, but one day they will have to talk to God about why they made a selfish decision and broke the heart of something God cares a lot about.  She says she knows.  I then ask her what God wants us to do.  Sadly, she tells me she does not know.

Pray for our enemies.  She turns her little head.  Momma tells little Noël that when somebody hurts us, we should pray for them.  She agrees.  We pray for the boys to be made aware of the ugly within their hearts that made them want to put themselves first.  We pray that the boys would not continue on in a path that will likely lead to destruction.  We ask that God gives comfort to Noël and helps her to understand everything that happened outside.  We ask forgiveness that we were angry at the boys and pray that they could know the love of Jesus Christ.

When all was done, she really seemed okay.  I honestly think this was the first major letdown that did not end in a flood of tears and unrecognizable words.  I really was proud of how Noël handled such a major disappointment.  I told her that maybe God's plan for her swing set is bigger than the one we could have had today, but it could be His plan that we just don't have one.  She gave me a smiley, "yes."

That certainly turned the situation into a positive, and I was definitely thankful that God used that disappointment to teach Noël a lesson on how we should respond to others and letdowns in life.  It also was a good reminder and lesson for momma on several levels.

The day has ended well.

God is good to us.

New Design

I know I have not said anything on here for several months.  I actually have a number of posts in the 'drafts' file, but never managed to actually post them.  I am only posting now because I changed the background and design of my blog.  I have been rereading my blog from the beginning of Flara's journey, and I found it quite straining on my eyes.  Thus, the 'new and updated' version... hopefully, more eye friendly.