averagelizajane-blog

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My Speech

I haven’t blogged in over a year ... this post really doesn’t count because it is a copy of a speech I gave this week at the a statewide nurse appreciation event the March of Dimes put on.  Nurses were awarded in 20 different categories.  There was also a silent and live auction to raise funds for the MOD. 

March of Dimes 

Nurse of the Year Event 

11/22/19

Richmond Hilton, Short Pump

When Latne asked me to speak today, I couldn’t say no because any chance I get to express gratitude to nurses I am going to jump on it!  I cannot think of very many honors higher than publicly thanking those who serve others -- especially babies.  So if you, all the nurses here today, get nothing else out of my little speech, please hear me when I say “THANK YOU!”  Thank you sincerely from the bottom of my heart!  You make a difference every.single.day!  Latne also asked me to keep my remarks under 5 minutes -- I’ll do my very best, but no promises … it’s going to be quite challenging to share our story in just 5 minutes.  

Let me begin with a day I will never forget.  It was an ordinary Saturday night in early 2018.  Anne-Marie’s health was pretty stable by then.  She had long been off oxygen, and she was tolerating her gtube feeds fairly well.  Anyways, I got her out of the bath and dressed her for bed.  I looked her in the eyes just like every other night and said, “Anne-Marie, I love you.”  And then that very ordinary night became one very extraordinary night in a matter of seconds.  Anne-Marie looked back at me with the most loving eyes and responded very robotically and very, very softly, “IIII Wuuub wun.”  You see, Anne-Marie was nonverbal up until last year.  I sat in the floor and cried tears of joy and relished in the fact that I had finally heard the three little words, I sometimes doubted I’d ever hear.  I vividly remember after a few minutes of crying, saying a prayer out loud (I usually pray silently and I hate to admit it, only when I need something) but in that moment I thanked God out loud for every single one of Anne-Marie’s nurses by name, doctors by name, therapists by name, her teachers by name, my parents, my best friend, Maggie, and everyone else who has cared for Anne-Marie along the way. 

Anne-Marie was born at 25 weeks gestation because I had severe pre-eclampsia and HELLP syndrome. The details surrounding her traumatic birth are a little cloudy.  However, I have a couple of very clear memories from that very scary time.

I was admitted to the hospital on January 10th. I was supposed to be on bed-rest because of my high blood pressure, but we had planned a 5th birthday party at the local bowling alley for my oldest daughter, Leah.  So while we were at Leah’s birthday celebration, my OB doctor called and said my blood work didn’t look good and I needed to go to the hospital.  Upon arrival and evaluation, the doctors said they would try and wait as long as possible to deliver, because they wanted to give me steroids for the baby’s lungs, but things didn’t look good and I may need to have a c-section “soon.”     

This news was not okay with me for several reasons.  The first and most important reason was that my baby, in my mind, was not developed enough to sustain life outside the womb.  At that time, I knew next to nothing about prematurity.  I just had this gut-wrenching feeling that my baby was going to die.

The second reason I was not okay with learning the news that a “soon” delivery was inevitable, was that I did NOT want my baby to be born on Leah’s birthday.  Again, I had a bad feeling I was going to lose my baby and I didn’t want to have an anniversary of a birth and a death on the same day.      

So, we were in the hospital, doing our best to process this very worrisome, new information and an in-depth ultrasound was done to predict the size of our baby.  Afterwards, two residents came in to speak with me about the possibility of the smallest breathing tube the NICU has being too large for our baby.  This information just lead to more questions with unknown answers.  They left and then it was a nurse who came back in, and with the most compassionate demeanor, she asked what we were going to name our baby.  I looked at my husband, Bradley, cluelessly … all I could think about is why are we going to name a baby, who probably won’t survive.  What’s the point?  It will just make this all harder?  We explained to the sweet nurse that we didn’t have any names picked out and we didn’t even know the sex, we had wanted to be surprised.  The nurse said that they liked to call babies by name when working to resuscitate them and caring for them -- she said they have a tendency to respond better.  With that small act of kindness, an overwhelming sense of comfort came over me.  I surrendered all and we named our baby.  

After that humble conversation with that nurse my feelings surrounding the date of my c-section began to change.  I figured if Anne-Marie needed to be born on Leah’s birthday, maybe that could actually be a gift and not a curse.  

And that’s exactly what happened. Anne-Marie was born en caul on January 12th.  She weighed 420 grams (that’s 14.8 ounces for all of us non-medical people) and was 10 inches long.  She was tinier than tiny -- about the size of a big Smartphone with a hard case.        

Anne-Marie did fairly-well during the very beginning of her 200-day hospital-stay.  I was discharged and tried my absolute best to keep some sense of normalcy for Leah, all while traveling back and forth to the hospital each day and pumping breast milk every three hours.  

It wasn’t until right around the 2 week mark when we had our first big scare.  I got a call from a doctor who said Anne-Marie’s oxygen stats were really low and they needed to change out her breathing tube to the next biggest size.  When we arrived, the normally dark and calm NICU room looked completely different.  The lights were bright and there was close to 10-15 people crowded around Anne-Marie’s isolette.  A social worker sat with me and explained what was happening.  One nurse had a cart with a separate computer and was logging everything the medical team was doing.  A respiratory therapist was bagging Anne-Marie.  Two doctors were conversing quietly about my daughter but not including me.  The air was tense.  Everyone was very serious.  A hospital chaplin came and introduced himself.  He asked me if I wanted to have Anne-Marie baptised. 

Prior to her birth, I was the one who thought she was going to die.  Now here we are, a couple of weeks later, and the experts think she’s going to die.  I politely responded, “No” to the chaplin.  I know it’s irrational now, but at that time, I figured if I allowed her to be baptised, I was giving up.  I thought if I willed her to live, she would.  I was scared.  I asked if I should call my husband in from work.  The doctor in the purple tie responded matter-of-factly, “Yes,” he said, “your baby is very sick and could die any minute.”  I called Bradley then stared at the beeping monitor displaying sats in the teens and 20s for half an hour.  I was in a daze, when one of Anne-Marie’s primary nurses asked me if I needed a break.  She may have never known it, but she had two patients that day, Anne-Marie and myself.  Her calm, professional vibe and consideration allowed me to deal with the situation.

These are just two of countless times during Anne-Marie’s journey where I credit my own success to her nurses.  All along, I’ve always credited Anne-Marie’s success to her skilled nurses.  And I always will.  Through 5 surgeries, several PICC lines, countless blood transfusions, back and forth transitions between the jet ventilator, conventional ventilator, and CPAP, progression from TPN to all mixes of formula, and graduating from an isolette to a warmer bed to an open crib, Anne-Marie’s nurses have been there on the front lines every step of the way. Not only did they medically care for her, but they went way beyond that … Anne-Marie’s nurses were really her first parents before we had her in our true custody.  They advocated to doctors on our behalf during rounds, they sang to her to soothe her, they dressed her up when she was able to wear clothes, they took pictures to decorate her bedside and did everything as much as they could to support the emotional needs of all of us.    

Today, Anne-Marie is in school and is very successful.  She’s spunky and silly and full of life. Anne-Marie loves reading, singing, pretend-play, her Nana, and following Leah around every step she takes.  My family is forever in debt to the NICU nurses and doctors, the March of Dimes, and the greater field of neonatology.  I reflect upon her journey from time to time and know without a shadow of doubt that each person who cared for Anne-Marie was put in that position at that particular time for a reason.  Her outcome would have been different if certain pieces to the puzzle were lost.  We will never be able to express enough gratitude for saving Anne-Marie’s life. On behalf of babies everywhere, I sincerely thank you for your dedication and service.      

#speech micropreemie lifeafterNICU marchofdimes MOD nurseoftheyear virginianurseoftheyear virginiamarchofdimes gtubekid teachermom

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Counting Blessings

It’s nearly 11pm on Thursday and my eyes hurt I’m so sleepy.  I’m angry because I’ve been up since 5am and going NONSTOP; I passed exhausted on Monday and hit zombie-teacher-mom-tired by Tuesday night. As usual, my two kids were in bed by 9pm, but I’m forced to stay awake until 11pm, again, tonight, as I do every night, night after night, every.single.day.  

I can’t remember the last time I wrote a blog.  Life took over.  I’ve been REALLY wanting to sit down and share an update, but between starting a newish job (8th Grade English) and juggling the typical everyday grind – I haven’t been able to make it happen.  

So why now?  What made me actually sit down in front of my computer … It’s NOVEMEBER!  My favorite month due to Thanksgiving & Prematurity Awareness Month!  AAAANNNNDDDD, even though I am struggling A LOT with my sleep, my weight, my organization, my parenting skills, and my overall wellness, I have much to celebrate.  I was reminded of the extent of my blessings tonight when I pushed Anne-Marie’s two nighttime medications into her feeding tube, and I use the term “pushed” literally! There was a time when we couldn’t actually push the syringe down with any kind of tiny force.  We would need to gently and SLOWLY move the top of the syringe down very carefully because the smallest amount of anything into her stomach would cause her to vomit. Now, I give her medicines as quick as possible so I can get to bed!  So, as I sit here and think of ALL we have overcome in just three and half short years, I cannot help but get a little emotional.  

 A RECAP

My second daughter Anne-Marie is a miracle.  

I used to hesitate using the term miracle (I actually didn’t like it) because I never felt like I “deserved” one.  As ridiculous as it sounds, I felt that God couldn’t possibly perform a miracle in my life.  I was raised going to church, but that didn’t equate to being spiritually mature or confident in my knowledge of God.  I knew the basics, but that’s it.  Therefore, I knew God doesn’t only work miracles for “good” people, he sees everyone as worthy … but I couldn’t help but feel inadequate.  It is extremely difficult to put into words, but the best way I can describe it is I felt God had way more important prayers to answer than mine.  Almost 4 years ago when I had a life-threatening pregnancy complication (preeclampsia with HELLP syndrome) and had a premature baby, I very much felt more “lucky” than the recipient of a miracle.  

I couldn’t have been more wrong.

I did have faith and I did wholeheartedly pray for a miracle, but I was unable to TRULY believe 100% that my prayers would be answered; I was scared my baby would die. Anne-Marie was born at 25 weeks gestation.  She weighed 14.8 ounces.  She was 10 inches long.  In other words she was smaller than TINY – about the size of my iphone 8 plus with my case.  She had an Apgar score of 2 and it took a skilled neonatal team 5 tries at intubation, but she survived the initial birth.  In addition to her traumatic yet miraculous start, there are several other details from “early on” that stand out as being heaven sent…

**My best friend Maggie saved my life.  Besides being intellectually gifted, she’s intuitive.  She knew what was going on with me and my pregnancy.  When my symptoms and bloodwork became alarming, she made sure I got the care I needed.  I am so naïve, I was going to go to my local hospital.  (Not knocking them at all – but I needed a hospital with a level IV NICU) Maggie insisted I go to Duke.  She’s knowledgeable in her field of women’s health and knew I needed to be monitored at a hospital equipped for a micropreemie delivery.  She sat in on a meeting while I was being admitted and helped put all the pieces of the puzzle together.  Plus, she was the calming presence that can only come from a trusting friend, which was exactly what Bradley and I needed during such a scary time.  Without a shadow of a doubt, Maggie was put into my life so many years ago for several reasons, and I choose to believe one of those reasons was to save my life at age 31.

**Prior to delivery, when I was being monitored like crazy for seizures, I vividly remember laying in my hospital room wide awake (very alert to be on Magnesium Sulfate) praying to God that they wouldn’t deliver Anne-Marie on my Leah’s birthday.  My worst nightmare was for Anne-Marie to not make it and then every year, I’d have a birthday (Leah) and the anniversary of a death on the same day.  Well, once again I am thanking God for unanswered prayers because as it turned out, Anne-Marie did need to be delivered on Leah’s birthday.  It’s actually a pretty cool blessing.  I take it as a pretty big sign from God that He is ultimately in control; I am forever reminded to trust him.  

**Anne-Marie spent nearly 7 months in the NICU.  She was very sick during part of that time.  There is one day in particular that is difficult to think about.  She was about 2 weeks old.  The “honeymoon” phase was over and her breathing wasn’t great. Her team wanted to change her breathing tube out to the next size up.  I don’t really know in medical terms what triggered this event, but I believe she just couldn’t handle the stress of being extubated then reintubated.  I walked into the room and the lights were up bright (unusual) and people were all around her isolette.  A respiratory therapist was bagging her, a was nurse were administering medicine, doctors were having a discussion, the social worker was trying to make me feel comfortable, and a separate nurse was logging everything they were doing into a laptop on a cart (very unusual).  Anne-Marie was unstable.  The medical team was anticipating the worst.  A hospital chaplain came to ask me if I wanted Anne-Marie to be baptized.  That was when everything hit me.  I asked one of her doctors if I should call my husband.  He responded that my daughter was very sick and she could die at any moment. My memories from the rest of the day are a little blurry, but I remember Bradley driving straight from work and being there in his dirty, greasy work uniform. We spent the night (without sleep) in a room off the side of the waiting room because Anne-Marie was in critical condition.  I remember texting everyone who I thought would legit get on their knees and say an honest prayer for Anne-Marie and asking them to PLEASE pray for Anne-Marie.  It is weird feeling, needing something SO SO MUCH, yet being so helpless.  In that moment, when I sincerely knew people were praying for Anne-Marie, me and Bradley, and our situation – a sense of peace came over me – one that can only come from God.

FASTFORWARD (to more miracles!):

It hasn’t always been easy, but Anne-Marie is now thriving.  This is the first time I can actually say that.  Before, when people would ask how Anne-Marie was, I would say, “Great!” only because that was the easiest thing to say.  Now, it is the truth.  Now, Anne-Marie tolerates all her tube feeds; no more vomiting.  She still requires a tube feed every 3 hours and it still takes an hour to complete so a lot of her time is still spent feeding – but at least she isn’t suffering anymore.  (Anne-Marie threw-up multiple times a day for the first couple of years of her life. This is not an exaggeration.  It was extremely sad to witness.) And sure, I have an occasional headache dealing with prescriptions/ insurance/ refills/ pump supplies – but overall it is not too bad, not anything like it used to be. Anne-Marie has made strides in all areas of her development:  She is eating more smooth purees by mouth, tolerating new sensory stimulation easier (loud noises, crowds, hand-washing, brushing teeth, etc.), and, most excitedly, she is TALKING!!  It’s been a LONG time coming, but another prayer has been answered.

This is the most recent picture I have of Anne-Marie.  She is at school celebrating Thanksgiving with her teacher and classmates.

Side-Note (necessary to FULLY grasp the magnitude of this answered prayer):

I am impatient, like really impatient, just ask my husband…  

Call it a mother’s instinct, call me pushy or crazy, I don’t care … but I knew it, I knew Anne-Marie wanted to talk.  I could see it in her eyes.  I read online about Augmentative and Alternative Communication, more specifically, Speech Generating Devices (SGDs), and strongly believed that it was going to be Anne-Marie’s pathway to oral speech.  I was optimistic but sadly, not many of Anne-Marie’s “key players” wanted to listen.  I’d continuously pitch the idea of getting a tablet to help Anne-Marie talk to anyone who would listen: my husband, her teachers, insurance people, her doctors, my friends at work, and even her SLPs, but unfortunately they were all reluctant. All of the non-medical/speech/ educational people would reply with the worst response ever, “She’ll talk, then you’ll want her to shut up!”  (I cringe --- it’s like telling a woman who is having trouble getting pregnant, ohh you just need to relax and it will happen.)  I never took it personally, because I know the individuals meant well, and they didn’t know it would hurt my feelings, but it did nonetheless. Responses like that are hurtful because what if she never talked, that happens you know.  And then when I asked all of the professionals who knew Anne-Marie about SGDs and AAC therapy, they were polite enough, but I never felt 100% heard.  I do not think they were opposed to Anne-Marie having an iPad necessarily, I just feel like their primary focus for Anne-Marie was somewhere else at the time. And to their credit, maybe it should have been.  However, I wanted her to have an iPad to help her talk and I wanted it immediately. She needed it.  When I’d talk to her, I could read her eyes… she had so much going on, so many thoughts, so much to say, but she couldn’t – she didn’t have the right tools…  laminating pictures and using PECS and Velcro just wasn’t cutting it (for Anne-Marie & no pun intended – lol).

So, Anne-Marie had a speech evaluation done at Duke on August 2, 2017.  Even though goals to trial AAC devices and begin AAC therapy were recommended at that evaluation, Anne-Marie did not have her first therapy appointment to late July 2018. For an entire year, I waited while feeling helpless.  The insurance people and the entire staff at Duke’s Speech and Audiology department know me by first name.  I called and appealed and emailed and cried and met face-to-face with a supervisor. I’d give up and quit fighting for what Anne-Marie needed.  I’d doubt myself, then try again.  Month after month.  My only mistake was not trusting God’s timing.  

Anne-Marie got her “talker” in June.  My parents bought it for her out of pocket because we (my mom and I) were determined we could watch YouTube videos and at least make a little progress.  Plus we wanted Anne-Marie to have it when school began in August.  We wanted the whole word to know just how smart she was!  As of the past couple of weeks, Anne-Marie does NOT need her talker! She only needs to have it for breakdowns of communication.  SHE IS TALKING!!  Not just saying sounds à she is actually talking! My daughter can tell me with her sweet voice, “I love you!”

I do not want my message to be misinterpreted – I do not believe AT ALL that the “talker” (Speak for Yourself App) alone was the sole reason for such a rapid progression of oral speech.  Anne-Marie has been in Early Childhood Special Education for the past 1.5 years. She gets speech therapy at school, in a clinic in town, and at Duke which are all HUGE factors! In addition, my mom is like an unofficial 1:1 teacher/OT/PT/SLP wizard who works magic with Anne-Marie.  My mom often scrolls Pinterest and TpT for activities.  She spends many quality hours with Anne-Marie each day. My mom has three drawers in my kitchen crammed full of Anne-Marie’s “Nana’s school” materials. I frequently come home to beans, water beads, pom-poms, etc. on my floor and my mom cutting out a new sorting activity that she has printed off for Anne-Marie.  My mom is a saint in every sense of the word.  She along with Anne-Marie entire village are major pieces to her miracle.

Sooo HAPPY THANKSGIVING to me!  

On this World Prematurity Day, I choose praise God Almighty from Him all blessings flow … and the blessings are bountiful. I choose to focus on what is GOOD as opposed to what is stressful.  Anne-Marie still requires a lot of specialized attention and takes a lot of out of us, BUT…

*I have a spouse who loves me unconditionally

*I have parents who love me and my kids and would do anything within reason for us

*I have an extended support system like no other

*I live in America where my special needs child receives medical assistance

*I have a job that fulfills me

*I have faith & comfort knowing God is with me in troubled waters

*I have an almost 4-year-old who is talking!

*I HAVE A MIRACLE!

#micropreemie #worldprematurityday #prematurityawareness #lifeafternicu #teachermom #thankful #findingfaith #november #feedingtubeawareness #developmentaldelay #apraxia #AAC #speakforyourself #amateurblog #positivevibes #intentionalthinking #mindovermatter

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I Believe

I cannot remember the last time I updated my blog.  Obviously, I’m very overdue for a post.  As always, do me a favor & ignore my grammatical, mechanical, and typo errors … because ain’t nobody got time for that!  ;) #letsbehonest

As many of you know, I was cast in my local Little Theatre’s production of Miracle on 34th Street.  I decided to audition for a part because Leah is into plays and I figured this would be a special bonding experience for us.   (After all, the past 3 years have more or less been focused on Anne-Marie and her needs.)  Little did I know, that play would turn out to be a huge blessing in my life.  

Here Leah and I are outside the star dressing room ;) right before opening night! 

My character, Doris, was a career-driven single parent who had lost hope in love after a divorce.  Doris focused on being a good mother, which, in her eyes, meant not allowing her daughter, Susan, to believe in Santa Claus.  She felt she was preparing Susan for some of the harsh realities in the world.

As the story plays out, Doris softens and becomes a true believer.  One of my favorite lines was, “We must believe, Susan.  You and I both have to believe or we’ll never get anything.”  Stop and process that for a second…

There have been COUNTLESS times in my life, where I could’ve let common sense or even negativity take over my mindset.  Fortunately, I have always been a believer, always.

Like Doris, I have been a divorced, single-parent.  Like Doris, I focused on my work (and NEVER missed a single day while going through a very dark time).  Like Doris, I put my daughter before myself.  But unlike Doris, I never questioned my faith.  Did I feel alone?  Absolutely.  Did I question my purpose and worth?  Absolutely.  Did I feel guilt?  Absolutely, I did.  Did I ever stop believing in God?  Absolutely not.  At my very core, I knew he was there, even when I didn’t always feel him.  

Throughout our community, it seems this holiday season has been filled with heartache.  My co-worker lost her teenage son.  A very dear friend of mine suffered a miscarriage.  A FB friend of mine gave birth to EXTREMELY premature twins.  Families I know personally are dealing with addiction, separation, cancer, etc.  Life is hard.  Life is unfair.  But I keep reflecting on Doris’ line, “We must believe.”  If we cannot believe, we cannot have hope…

A play is is like a intricately woven quilt (well, I quilts are sewed not really woven, but you get my point) -- every piece is important to the overall pattern. The costumes, lights, sound, lines, lead roles, supporting roles, publicity, props, the director … all are significant. To play Doris, I had LOTS of lines to memorize. In order for my lines to make sense, I relied on my cast mates to learn their lines and deliver them just right.  There is a certain level of trust that goes along with being on stage.  Did we say out lines perfectly each night? No, but fortunately we were able to give our all to each performance even though we had our share of blunders.  For example, an alarm backstage was going off very loudly during one show and Mr. Macy (Devin Hall) acknowledged it and improvised by saying he was going to have maintenance fix it.  Another show, Fred (Ryland Clark) forgot a prop he needed for the scene but he was able to think quickly on his feet and incorporate a way to exit and re-enter with it.  

Basically, I am a person that does better when I feel I have control.  I could control my own level of dedication and my own actions, but that was all.  (Which is exactly why being in a play was the perfect personal growth experience.)  Believing in our director, crew, and cast and believing our play may be a blessing to our audience proved to me that greatness really does happen when we push ourselves and take-risks.

Our whole cast and crew!  These talented people will always be so special to me!

Just like our play, I really have no control of Anne-Marie’s outcome.  I can control my own actions.  I take her to OT, PT, and ST weekly.  Well, my mom takes her to all of her therapy appointments.  #thankyoujesus  #mymomisthebombdotcom I read to her.  I feed her on schedule as best I can.  I try my best not to miss medication doses.  I do the best I can.  However, my closest friends know I worry very much about her future.  I have been scared of the unknown since her traumatic beginning.  Entering the world weighing 14.8 ounces and with VERY underdeveloped lungs and spending almost 7 months in the hospital really put her at a disadvantage for cognitive development.  I pray and I trust and I believe.  I believed Anne-Marie would survive when her lungs were very, VERY sick.  Still, I believe Anne-Marie will not need her feeding tube forever.  I believe Anne-Marie will talk and I will soon hear her say, “I love you, Mommy.”

Here is Anne-Marie at a recent PT session.  She’s riding a tricycle for the very first time!    

I believe my co-worker will be reunited with her son again one day.  I believe my friend will have a healthy pregnancy when the time is right.  I believe the twins I am praying so hard for will become stronger and healthier and not have significant, lasting effects from their premature births.

I believe there is still so much good in the world.  Actually, I know this because I encounter it daily.

Merry Christmas Friends!   

#communitytheatre #miracle on 34th street #HCLT #makingmiracles #micropreemie #lifeafternicu #preemiejourney #teachermom #ametuerblog #believe #christian #seekhimfirst

[averagelizajane-blog]

God is Good All the Time & All the Time, God is Good!

I believe it is both a blessing and a curse to be a special education teacher and a parent of a child with special needs.  I love working with children who have special needs and feel inspired by them daily, so what I am about to say should not be misinterpreted: I DID NOT WANT ANNE-MARIE TO HAVE AUTISM or an INTELLECTUAL DISABILITY.  It is not because I think those labels are death sentences, it is simply because no parent wants that for their child.  I know if Anne-Marie was to have Autism, CP, learning disabilities, a behavioral disability or anything really, it would be okay.  

I have been worried about Anne-Marie having Autism and/or an intellectual disability for two and a half years and I knew it was just a waiting game to see if how she would develop. Autism is a high incidence disability in general, but even more so in children born prematurely.  I think because I work so closely with students with disabilities at school, I have a heightened awareness of the red flags and early signs of certain disabilities.  At the very same time, I also have the compassion and acceptance needed to work with kids with unique needs.  It is easy to love children with disabilities at school, it comes natural, but, again, I just didn’t want that for my own daughter.  

Just like many of my school children, Anne-Marie is a smart girl.  My greatest concern right now is that she is not talking.  I am really worried about her communication.  Anne-Marie says words, but never says them again.  She becoming more and more frustrated because she wants to express herself, but she is unable to do so.  And when I’m asked about her and I explain my concerns sometimes well-meaning people respond with, “She’ll talk, she’ll start talking one day and then she won’t shut-up.” That really doesn’t comfort me at all.  (It is like when she was in the hospital, everywhere I went people asked me what Anne-Marie weighed and when she was coming home. #annoying) It actually sort of upsetting, because I know deep down talking is going to be a REAL challenge for her.  She is going to have to work extremely hard at something that develops naturally in other kids.  It is going to take LOTS of therapy for her to learn to communicate.  We may even need to use another form of communication, with spoken language being the ultimate goal.  Anne-Marie continues to be 100% gtube dependent, so although she is able to eat tiny amounts of pureed solids without vomiting she still struggles with feeding (which of course further impacts her speech).

Anne-Marie gets speech therapy, OT, and PT weekly.  I simply cannot stress the amount of time it takes to practice all of these skills. Every single day, I feel inadequate (I know that’s totally normal and most moms do) but there simply are not enough hours in the day to give Anne-Marie all the “things” she needs. For example, I may miss a breathing treatment, or a medicine, or a feed (yikes), or sensory play, or attempting to get a toothbrush in her mouth, or her mouth exercises, or her PT exercises.  I need to keep moving forward so she doesn’t regress.  Being a teacher, I fully understand right now is a critical time for a child’s brain development, and Anne-Marie is playing catch up and I feel the urgency!  So not only do I worry about disabilities and diagnoses, I also stress about what I’m doing to try and compensate for what damage is already done by her traumatic beginning.  If I miss a feed (which is rare, but happens) I turn into a complete monster, fussing at everyone in my way.  Parenting Anne-Marie is WAY harder than I let on.  Most of the time, I hide my fears and exhaustion behind a smile, because it is easier to say things are fine rather than to give the honest answer.  I could go on and on about our struggles and why each therapeutic activity is important and why I feel so guilty if I miss one… but I am pretty sure you already get the point, plus I have an AH-AMAZING story to tell... which was the reason I began this blog post to begin with.  #dontgetsidetracked    

So last Thursday, Anne-Marie goes in for her scheduled developmental testing with the psychologist in Duke Children’s neonatal department and the special infant care clinic (SICC).  This is the clinic that has been seeing Anne-Marie since she was discharged from Duke after 200 days in the hospital.  These doctors follow certain babies up until age 3.  Anne-Marie worked with the psychologist for about 2 hours (with breaks of course) and basically she performed above their expectancies for a baby with her history!!!!  Who would have ever thought my 14.8 ounce micropreemie would show off at her 2 year old follow-up visit?  So I say this to “Dr. Purple-Tie” who told Bradley and me that awful day in the NICU when Anne-Marie was 2 weeks old that Anne-Marie could die at any minute --> look at her now asshole!  LOOK AT HER!

They say, not to tell God about your great big problems, but to tell your problems about your great big God, either way I say when you put your trust in the Lord, you get GREAT BIG ANSWERS!!  The developmental psychologist was so impressed with Anne-Marie’s results.  She stated that they not see outcomes like Anne-Marie’s very often at all.  She also said that she does not suspect Anne-Marie will have Autism. Her exact words were “in no way does she present like a child with Autism.” (I think I lost about 20 pounds off my shoulders after that statement.)  She agreed that she definitely has some sensory processing concerns and her communication is delayed, but those two things together to not always mean Autism.  It was her professional opinion that Anne-Marie was more social than children with Autism.

Thursday was emotional for me.  We were told that even though Anne-Marie is doing well, she has some significant delays and areas of weaknesses.  We were told that she will more than likely have some major challenges in school.  We were also warned not to allow people to underestimate her abilities, because they will see a petite girl in glasses who is basically nonverbal and automatically think she is incapable of learning.  It was stressed how much we would need to advocate for her in the coming years.  I am a special education teacher, so NONE of this bothered me in the least.  #igotthis It was when we were told WHY Anne-Marie was doing so well, that I became overwhelmed with tears of pride and joy.  I credit one person: Dianne Holmes, my mom.  Momma put her own life on hold and came to our rescue when Anne-Marie was born.  She quit her job as a teacher at a local private school to keep Anne-Marie so my husband and I could continue to work and bring home income to support our little family.  We were unable to send Anne-Marie to regular day care because she was oxygen and gtube dependent.  Momma has been more than a caregiver for Anne-Marie.  She has also been her home-school teacher.  Momma goes to therapy with us and takes notes and gets “homework” so she can practice skills with Anne-Marie before the next therapy session.  Momma has made things from Pinterest, sang songs, engaged in pretend play, played in rice and playdoh, made a sand table, read countless books, and even made Anne-Marie her own ball pit.  I know how hard momma works with Anne-Marie because I try to do all she does on the weekends when I am home with Anne-Marie, and I simply cannot do it.  My momma is a saint and I thank God for her.  Momma loves all of us and it very apparent because of how devoted she is to our family.       

In celebration of our “awesome news” I am going to try something I’ve never done before.  I am going to type out a simple prayer in this blog post.  This is a tiny bit outside of my comfort zone, but I am just so grateful that I feel compelled to do so …

 Dear Heavenly Father,

Thank you for all of my many blessings in life.  I especially want to thank you for giving me my mom.  She has learned from your teachings to love others as thyself as she never puts herself before her family.  I want to give you all the glory for allowing Anne-Marie to work towards overcoming the obstacles in her life.  I have witnessed your unconditional love as you continue to be there for me on the difficult days in my parenting journey and for that, thank you.  Please be with all those near and far who are sick, struggling, and lonely, just as you have been there for me.  In Jesus’ name I pray, Amen.      

#lifeafternicu #micropreemie #micropreemiemom #specialeducation #teachermom #blessings #micropreemiejourney #awesomenews #godisgreat #ameturblogger #tubiemom #tubefeeding #overlookthetypos

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Praying for Patience

**I haven’t written a blog in a while, so as a reminder, I make mistakes and grammatical errors.  Please know I am a sleep deprived mom so please go easy on me ;)

I’m torn between believing that 1) dreams only come true for those who chase them & 2) things will happen in God’s timing, meaning I need to wait patiently for answers…

 I love all of these sayings, BUT they confuse me:

 “A dream becomes a goal when action is taken to achieve it.” –Bo Bennett

 “A goal without a plan is just a wish” ― Antoine de Saint-Exupéry

 “If we keep doing what we’re doing, we’re going to keep getting what we’re getting.” –Stephen Covey

 “A dream is just a dream.  A goal is a plan with a plan and a deadline.”  – Harvey Mackay

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

“If your plans don’t work out, don’t worry God has better ones.”

 “My life may not be going the way I planned it, but it is going exactly the way GOD planned it.”

“Happy is the one who waits while he prays, and never loses his patience, for God’s time is the best time.”

 ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Rewind to over three years ago, I had been a special education teacher for several years and knew eventually I wanted to have a wider influence on kids’ lives, so I started a graduate program to become a principal. I had completed a semester in an endorsement only program when I decided I could do the same thing in a little more time through a doctoral program, so thus I dove head first into an Ed.D cohort. I loved every single minute of my classes and my weekly carpool with my good friend.  Even though it was tough, it was exciting and it was something just for me. I often envisioned the way I would do things one day when I became a principal or a sped director.  The writing requirements were on a whole new level.  To say I was challenged was an understatement, yet I was amazed by my ability to push myself and complete my papers with remarkable grades!  Looking back now, I think I learned just as much about myself as I did leadership.  At the time, I was doing what I believed to be right … setting a goal, and working hard (REALLY freaking hard) to achieve it.  

I became pregnant and the timing was seriously perfect. Our baby was due between semesters and it was possible I would not even need to miss a class.  However, I developed life-threatening preeclampsia with HELLP syndrome and our baby was delivered 3 ½ months early, exactly two days before the first class of my 3rd semester in my doctoral program.  Life can change in the blink of an eye.

In my opinion, the definition of motherhood is sacrifice & giving up on this dream was a tiny, tiny price to pay for being able to care for my sweet girl.  She needs me.      

Fast forward to now, my colleagues are finishing and graduating and I sincerely could not be more proud.  I am thrilled for their success and for all the new doors that are waiting to be opened for them.  Of course it is a little emotional at the same time… not necessarily because I am thinking about “what could have been” but more because I took the whole having a premature baby as a sign from above that I should not be a school leader.   Once I got over the shock of almost losing my newborn and then spending over 6 months in the hospital with my baby, it actually brought me much peace knowing that “things happen for a reason” and I did my best to carry on with being a regular, working mom of two, your “average jane.”  

You may be thinking, so what’s the problem?  The problem is I have an overwhelming sense that I need to be doing MORE.  There is no way I can suppress this feeling.  I have tried and it does not work.  So what do I do, actively go out and start a new journey? Ummmm, aint nobody got time for that! I do not sleep as it is because of Anne-Marie’s feeding schedule and her feeding intolerance.  Having a child that is tube fed is far from easy.  Her strict schedule does not allow for much other than washing bottles, mixing meds, flushing her tube, refilling prescriptions, etc.  I love my full time job as a special education teacher, but it not always the easiest job. I stay stressed out over my housework. I’m dealing with a few health concerns of my own.  I try to be fun for my family, but I’m failing miserably.  Life is too short to remain stagnant, especially if it eventually kills your dreams.

Maybe I wait and pray some more.  Maybe I take another chance and chase a new dream.  Time will tell …      

 “When life gives you a hundred reasons to cry, show life that you have a thousand reasons to smile” --unknown

#lifeafternicu #micropreemie #micropreemiemom #teachermom #godstime #tooblessedtobestressed #amatuer blog #tubielife #tubiebaby #feedingintolerance #chasedreams #lifeisshort #yolo #takeaction #liveyourlife

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Honest Vent Post

Before Anne-Marie feeds, we have to “vent” her ... it lets the air out of her stomach.  This post is me venting ... just letting out air.

It’s 4:20 AM.  I awake in panic as I see the clock.  Errrrrrr!  D@mn!t, I can’t believe I did it again.  Geeez, I’m so mad.  As I jump out of bed a string of explicits enter my mind.  Bradley is half conscious as he asks me what’s wrong.  “I didn’t start Anne-Marie’s overnight feed” I snap. I’m suddenly very awake and pissed off. Crazy thoughts flood my mind…. I can’t keep this up, I need serious help, I am not made to be a mother …  I stomp to the kitchen and start preparing her formula and drawing up medicine.   

If I can’t stay awake to start Anne-Marie’s overnight feed, I set an alarm to get up and do it.  But here lately I’ve been accidently cutting off my alarm.

 You see, Anne-Marie continues to vomit EVERY.SINGLE.DAY and so she NEEDS her overnight feed.  It is mandatory.  She can’t tolerate enough volume during the day so we give her more volume at a slower rate while she sleeps at night.  She feeds every 3 hours during the day at 8am, 11am, 2pm, 5pm, 8pm and then she feeds at 11pm to 4am.  Her daytime feeds last one hour.  Most days we get off schedule because of homework, supper, dishes, laundry, baths, breathing treatments, etc… so often I have to set my alarm to wake up at midnight to start her overnight feed.   

Tonight Bradley helped me cook supper.  (I know right!!)  We sat down to eat and Anne-Marie was in the den feeding in her high chair.  She was watching Sesame Street at the same time. The right thing to do was to bring her into the kitchen with us so she could “eat” with our family.  I needed to try and give her some tastes of baby food. What did I do?  Leave her right where she was :/  I chose convenience over my daughter’s needs.  I chose to sit and eat with my husband and oldest daughter instead of including Anne-Marie.  Practicing oral feeds with her is WORK, it’s exhausting.  After every tiny spoon dip of purée she gets to hear a song on this nursery rhyme app as a reward.  Classic ABA.  She will not even attempt to open her mouth without the ipad or phone being close to her tray.  She may get a ½ tsp in twenty minutes.  Tonight, I just didn’t feel like working during my supper.  #fail  I can’t keep slacking … Her success depends on us, on me.  

 Sleep and patience are scarce around the Griffin house.  All I can do, it keep on keeping on.  Focus on what is right in my life.  Thank heavens for my saint of a mother.  And pray!

#vent post #feeding tube #parenting #mom woes #lifeafternicu #micropreemie #preemiejourney #feedingtherapy

[averagelizajane-blog]

We had a fun day together celebrating Anne-Maire's birthday. We met one of her favorite nurses and took her to play at Marbles! #sundayfunday #familydayout #marbleskidsmuseum #raleighnc #lifeafternicu #preemiepride

#raleighnc #familydayout #sundayfunday #marbleskidsmuseum #lifeafternicu #preemiepride

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In all that today is and this week brings, let us reflect and remember that love ❤️ is the greatest of all. #mlkday #upcominginauguration #mondaymotivation #weallbleedred #unitedwestand #lovethyneighbor #morealikethandifferent #peace #love

#love #weallbleedred #unitedwestand #peace #lovethyneighbor #morealikethandifferent #mlkday #mondaymotivation #upcominginauguration

[averagelizajane-blog]

We had a great evening celebrating my girls birthdays. I simply can NOT believe tomorrow I'll have a 2 year old and a 7 year old. Where does the time go? #blessed #birthdays #daughters #families #sisters #celebration😊 #happy❤ #joy #birthdaytwins🎂

#families #joy #birthdays #happy❤ #blessed #birthdaytwins🎂 #sisters #celebration😊 #daughters

[averagelizajane-blog]

My snowy sunrise this morning! #southernsunrise #southernva #backyardview #januarymorning #godsportrait

#januarymorning #southernsunrise #godsportrait #southernva #backyardview

[averagelizajane-blog]

#mondaymotivation✨

#mondaymotivation✨

[averagelizajane-blog]

Face fear head on! #thursdaythoughts

#thursdaythoughts

[averagelizajane-blog]

It may take her 10 bites and 20 minutes to get a 1/2 Tbl, but my girl is eating!!! #tubiebaby #tubiebaby #gtubekid #gtubeawareness #gtubefed

#gtubekid #gtubeawareness #tubiebaby #gtubefed

[averagelizajane-blog]

Be brave people! Everyone has a message! #wednesdaywisdom

#wednesdaywisdom

[averagelizajane-blog]

I'm feeling better now than I have in a really REALLY long time, plus my clothes fit again!! #transformationtuesday Join me on my journey to optimal health! This week we have FREE membership!! #nutritionalcleansing #weightlossjourney #healthyaging #jointsupport #eneryboost

#eneryboost #transformationtuesday #healthyaging #jointsupport #weightlossjourney #nutritionalcleansing

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#mondaymotivation #newyear🎆 #newoutlook

#mondaymotivation #newoutlook #newyear🎆

[averagelizajane-blog]

Happy Anniversary to Me!

One Year Anniversary

Disclaimer: This goes for all my posts, but I am a full-time working mom & I type these posts out VERY quickly.  I do proofread, but my post WILL include type-ohs, grammatical errors, errors of all kinds.  Please overlook & understand I suffer from sleep deprivation.  

I got an email yesterday from Tumblr letting me know that my blog, “Average Liza Jane” is one year old.  REALLY?  Already? It been a whole year since I bravely hit post to that first little snapshot of my life.  Geeez time flies.  

I’ve wanted to post an update for quite some time, however the reality monster keeps eating up the only spare 5 and 10 minutes I seem to be able to find.  

So here’s my life …

I’ll start with my preemie ROCKSTAR, Anne-Marie. Anne-Marie is 22 months old (OMG how? My baby is not a baby anymore) & she weighs 16.9 pounds.  She’s plateaued with her weight gain which is concerning to her doctors.  She continues to vomit daily which makes it impossible for us to make her daily intake goals.  I refuse to force feed her when she’s throwing up.  It’s torture to watch her little eyes begin to water, grunt in pain, retch and then ultimately vomit.  She looks panicked and terrified even though this occurs multiple times a day.  Her GI doctor changed her formula to a real foods blend, but that didn’t help.  She had an endoscopy the end of last week and we just found out the results of the biopsies from her esophagus, stomach, and small intestine came back normal!  That’s awesome news!  Truly it is, but I’m beginning to think I am going crazy.  She has chronic vomiting with an unknown nature. It is not normal for an almost 2 year old to throw up her entire feed multiple times a day, especially since she had a surgery that supposed to prevent her from being able to vomit. (Nissen Fundoplication)  I need her to stop puking and I need her to start gaining weight and growing.  Is that too much to ask?

Anne-Marie is still on a strict tube feed schedule, every 3 hours … That’s a HUGE undertaking.  Think about it!  Since her birth I’ve been doing something for her feeding every 3-4 hours.  I pumped breastmilk while she was in the NICU for 200 days.  I continued to pump breastmilk for 3 more months after she came home for a total of 9 months.  THAT’S A BIG FREAKING DEAL.  It was so hard.  I was so jealous of breastfeeding moms who could just offer their baby a breast and then their baby would latch and feed.  I was stuck with two plastic funnels to my poops letting a machine suck them like a cow for NINE MONTHS, day in and day out for NINE WHOLE MONTHS.  I hated it, but I did it for my baby because I loved her so.  Now, I tube feed her every 3 hours.  It is almost as exhausting.  It requires A LOT of time.  She is actually feeding for an hour and a half so that leaves an hour and a half off where we prepare for the next feed, let her play, change her diaper, patch her eye, work on other therapies.  It’s tough. Sorry, I feel like I’m rambling … I’m going to blame it on the lack of sleep.  

 Anyways, God knew I had the right support system in place when he gave me Anne-Marie.  I have the absolute best mother, father, husband, & in-laws to help take care of all of Anne-Marie’s special needs.  I could not continue to function if it weren’t for their help. Momma is Anne-Marie’s primary caregiver during the week while Bradley and I work.  My MIL is always there taking her turn keeping Anne-Marie also. I am so lucky in this regard.

Anne-Marie is doing remarkably well in other areas. She is off of oxygen completely now!! No more taping a nasal cannula to her face each night while she sleeps!!  Whoop whoop!  We still have the concentrator here, because her doctors feel like if she gets sick this winter, it will be good for her to have it.  Anne-Marie is making progress learning to eat by mouth.  She takes TINY tastes (VERY itty, bitty bites) of baby foods now.  Maybe 5-10 tastes each day.  She is doing well with pulling-up.  I think she will be walking soon!  

 Bradley & Leah are the same!  They are both such huge parts of my day.  I look forward to Leah’s cute conversations on the way to & from school every day.  I work at her school & our 1:1 time is priceless.  I even enjoy helping her with homework.  Listening to her read is my favorite time of day!  It melts my heart seeing her become a reader.  I LOVE IT!!  Bradley and I hardly get to speak to each other most days, and that makes me sad. I miss how things use to be when we were able to go out and do things.  Don’t get me wrong, we still do things, but it’s not the same.  It’s hard to explain.  I think the ongoing stress of constant tube feeds, dr. appointments, insurance battles, bills, VOMIT has changed who we are … both of us.  I love my husband more than anything and he’s a great provider for us and an even better dad to our girls, I just wish we both weren’t so exhausted day in and day out.  That is all.

 New subject …

 I joined a health and wellness program called Isagenix and I am enjoying having “something of my own”.  I fell in love with the products and decided I might as well try getting into the network marketing thing & possibly earn some supplemental income to help with our hellacious medical bills.  I’ve made new friends and I’ve become a healthier version of myself all at the same time.  I’ve lost 24 pounds, given up caffeine & fast food.  It’s pretty cool.  I look forward to helping others discover just how this company prides itself in using only the highest-quality ingredients available, thus the reason people experience such real and lasting results.  One of my short-term goals is to find someone that wants to step outside their comfort zone and partner-up with me to share Isagenix also.  I’ll continue to update you all on this also. (side note:  If you are the least bit curious about the program, PLEASE send me a message – knowledge is power & you deserve to have the info.)

 I wish I had an Aha moment or something really profound to say, but I don’t … I just felt the need to give a really quick update since my blog turned a year old.  Happy Birthday to Liza’s blog!  

 “My blog is a collection of answers people don’t want to hear to questions they didn’t ask.” 

― Sebastyne Young

Bradley is riding us around on the Polaris!  Enjoying the last warm days of fall.  

#preemiejourney #lifeafternicu #tubie #tube feeding #mommyblogger #amatuerblog