..wow, TONS AND TONS to update!!!!

..okay, wow..i have so much to update on, this may take installments!

..where do i even start..bebe is literally amazing.  we just celebrated her 3rd birthday & we count that an absolute miracle..as some of you know (and i may have even mentioned on here, before)..we have heard that nearly 30% of children diagnosed with the syndrome that bebe has been diagnosed with never see their 2nd birthday..and here we are at the 3rd one & going strong..it's probably easiest to compartmentalize all her accomplishments into zones, so here we go..

GROSS MOTOR: we have a walker----no, make that a RUNNER!  b has began to walk and even run.  she began to walk about a year ago and let me tell you, she is quite mobile & into EVERYTHING!!!!  we are still working on the transition from sitting to standing, so if she falls down, she will just look at us to help her stand back up.  she actually recently started to crawl (who says you have to crawl before you walk---not bebe)?  she rolls & crawls when she falls down & even recently mastered the transition from laying to sitting (yaaaaay!).  we are working with her physical therapist now on going up & down stairs..which b is doing great at with help), also stepping over things & squatting.  we are so proud of her for learning to bend over to get things, since there was months & months of a walking child who would drop all her toys & then stand there & look at you like "i'm out of toys & can't get those." 

FINE MOTOR:  we are still really focusing on getting bebe to feed herself.  we remain on a soft/blended diet since our ability to chew is still being harnessed.  drinking is still a bit of a struggle for us, since the best way to get her to drink is by bottle or syringe.  she still does pediasure/heavy cream mixture by a bottle & we are trying several ways to get her to drink other liquids.  i think our next step may be thick-it to help with juices & water.  for those of you who don't know what that is, it is a powder that makes things like juice & water a consistency like honey or nectar (depending on the amount used).  so, it gives her a few extra seconds to figure out how to lift that tongue and push the fluid down her throat (crazy what we take for granted, like automatically doing all that).  anyways, so hopefully that may help. 

SPEECH:  bebe is learning more signs to help her communicate with us her needs & wishes.  she signs: more, eat/food/bites, all done, play, night night and dirty (for a stinky diaper---as if we need her to announce that, hahaha).  we are still working on: pain, yes, no, please & thank you.  we are about to start some new techniques to try and help her get used to her mouth & jaw being in different positions.  b's mouth & jaw is formed differently, so it is most comfortable sitting just the way it is.  so, we are going to have to get her a little out of her comfort zone.  she is noticing her tongue more, which is awesome, but we are still working on really moving it around & using it to make sounds.  she is babbling ALOT and says things like" hi, bye & dada.  she is definitely imitating more, like making general noised with the same inflection as us, but her lips & tongue don't move so much, so it is her own little version of that word or phrase.  she is also doing cute things like throwing her hands on her head when i say "oy vey", throwing her hands in the air when i say "roll tide", humming/babble singing & doing hand motions to childrens songs, etc.  she is so smart & i really feel like she is learning to be the articulate little girl that is inside of her.  i know she will be so glad when she has the understanding to clearly communicate what she is thinking-----bless us!

GENERAL COGNITIVE: therapists would have her at about a 12-15 month cognitive ability at this point.  we are still working on following instructions and things like that.  so, in public places, i don't feel comfortable letting her roam, since she is not quite at a place where she would follow my instructions.  but, even still, that is progress from where she was before, so we count it as a victory.  she'll get there---in her own precious time---she'll get there. 

GROWTH: b weighs almost 19 lbs & is almost 33 inches tall.  so, she is still a bitty little thing.  her clothes still range all over the place, but usually we have to get 12-18 months clothes for the overall length, since she is so long.  but then we generally have to take things in or alter them to be slimmer, since she is so lean. 

MEDICAL:  oh wow...let's see.  let's just start head to toe, that is easiest for me to think. 
NEUROLOGIST-she had her first seizure in february of this year.  we were bummed, because we had made it through the first 2 1/2 years without seizures.  we thought we were in the clear.  that first seizure was a febrile seizure, due to a spiking fever.  they did not feel it was anything to worry about, since average kids have febrile seizures.  within that week, that spiking fever turned out to be RSV (first season without synagis & she gets it!).  after watching her with the RSV, i was so grateful for all that terrible hard time on synagis.  i know before her heart surgery, it absolutely saw how could have taken my baby's life.  we were in the hospital for a few days with that.  then about a week later, she started having seizures, but not associated with any fever.  i can safely say this was one of my breaking points.  she was seizing almost constant for what seemed like forever.  i broke down in the hallway of the ER, because the reality of the possibility of losing my child hit me like a ton of bricks.  i had heard that a major culprit of children who die with Wolf Hirschhorn Syndrome was constant seizures.  and all that ran through my head was "dear God, please let this not be the beginning of the end....please don't take my child.....please."  i thought my heart had been ripped out of my chest and trampled on the ground.  in fact, i couldn't even make my normal "call the grandparents" phone calls, because i literally was a complete wreck.  that admission, i didn't really want to see anyone or talk to anyone.  it was the reality check of the seriousness of the complications with the syndrome.  i still can't really type about it without getting emotional.  but the Lord's power is made perfect in my weakness & my oh my was i weak.  He took great care of her & the doctors were all wonderful.  she is now on a daily medication & is doing terrific.  we had one additional seizure, but it was a febrile seizure, a few weeks after that.  it actually was her fever spiking due to another terrible respiratory virus that again landed us impatient.  the doctors explained it as RSV's horrible big brother on steroids.  our little one was TERRIBLY ill with fevers in the 105's.  she spent a few days in the critical care unit, thankfully under very watchful care of the amazing staff.  and in a weird way, it was nice that i got to go home & sleep at night.  the Lord is so good to me to grant me sleep even in the midst of those times.  so, that is where we are----ohhhh, and i can't remember if i mentioned it or not, but they can't exactly find that pesky cyst they had found in her brain when she was born---it just, didn't really show up on her MRI.  (laughs)  ohhh, Lord, you are so funny to just make things disappear.
EAR, NOSE & THROAT-we had chronic ear infections, so like many other little ones---we had to get tubes in our ears.  it was actually almost humorous the day of surgery.  we were in the little waiting room & the nurse comes in all concerned & so sweet.  she kept telling us how everything is going to be okay & there is nothing to be worried about & how it is always harder for the parents than the child.  i had to crack up when she left the room.  i looked at chad & said, yeah----she has no idea what we've been through, bless her heart.  she was so sweet & it wasn't that i was completely un-concerned for my child, but after open-heart surgery when they say things like "so we open her chest, stop her heart from beating, hook her up to a machine that does that for her, fix the problems & then just start the heart back", i'll be honest----a gas mask & tubes in the ears doesn't really effect me so much. 
ENDOCRINOLOGY-we started seeing an endocrinologist to monitor her growth & to build a relationship for the possible future of growth hormones.  i have seen some families who have had children with Wolf Hirshhorn Syndrome who have had success with growth hormones.  so, we wanted to hit the ground running.  at her last visit (yesterday), the crna explained that an average child b's age grows at a rate on the scale of about a 5 (don't ask me exactly, it's like a number associated to the rate or something).  well, my amazing bebe's rate was on the scale at 13.  whaaaat, yeah, she beat her peers at the rate of growth.  she grew 2.5 inches by their measurements in only six months, and put on about a pound.  now, she did have that bout of turmoil you read earlier with all the sicknesses---so, she lost about 2.5 lbs & then recovered it & another lb.  i think that is awesome!  we are still years away from even considering growth hormones, but i am still bang up proud of my little one. 
CARDIOLOGY-they have told us she is healthy on their end & we just have to go in a couple a years to let them take a look at her again.
GASTROENTEROLOGY-the syndrome seems to effect her growth in a dramatic way..she doesn't absorb calories like the average person..so, it takes more calories for a slower return..so, we are boosting everything she eats with things like extra virgin olive oil, heavy cream, butter, etc.  when we can afford it, we also use products call duocal (a powdered calorie) & scandishake (sort of like carnation instant breakfast x 10).  i was telling her endo-doctor how i've also switched to feeding her about every 2 to 3 hours & she said "wow, that's a full time job, mom".  it's nice when people notice.  i told her how preparing, hand feeding & cleaning up seemed to take up so much of my time.  i explained it's like the chaos of an active 3 year old with the high-maintance of a newborn.  good thing my lil munchkin is worth the constant work.  and i know there are lots of mommies & daddies & caretakers that are WAAAAAY busier than i am, so i am grateful.  she is still doing pediasure, rather than whole milk, because it is more complete.  wish all this special stuff wasn't so dang expensive!
NEPHROLOGY-by ultrasound & blood work, it appears that b's kidneys were not formed as completely as an average child.  so, this causes a lower function of her kidneys.  we are monitored by the nephrologist, but overall, she is looking great.  at last report (about 2 weeks ago), her kidneys had grown with her & her blood work was looking better.  yay!
ORTHOPEDIC-bebe was fitted for some custom ankle braces to help her with her intense overpronation.  that is where her feet roll in.  b's was so significant that at times her inner ankle would almost be on the ground.  so, the braces help to align her feet correctly and support her arch.  she doesn't even notice them now & does great using them.  they are quite minimal & have worked great.  i can even tell when she isn't wearing them, her stance is better. 
PEDIATRIC-we go for her annual check up next week.  we so adore her pediatrician.  thankfully, we haven't had to visit much lately, so she will be so excited to see bebe.  she is just as proud of her as we are.  i think bebe may just be one of her favs---just sayin. 



PHEEEW!!!!  that is the basic (hahahahahaha) update on the sweet child..but more than anything, after all these "facts" and such..i must say how extremely proud i am of that child.  she is the toughest & most determined soul i know.  doctors put limitations, she has blasted them.  i think she will continue to do that & i think she may just change statistics along the way.  we have high expectations of her & don't let her quit...but she puts in more heart, soul & effort than we could even expect from a 3 year old.  man, has God got a story He is writing in her & through her.  i'm so privileged to be a part of it.   

..k, that was alot, so i am going to shut up now.  i really am going to try and be more on top of this!!! *laughs* 

b's18 month pictures:

1st day of school:

1st big girl hair cut:

School picture day:

Easter egg hut at school:

beach trip:

1st zoo trip:

1st carousel ride:

 

birthday party day: 

 i just can't believe she's THREE!!! 

 happy birthday, baby girl!

..we were working on standing.

Bebe was working with her Physical Therapist the other day and she was working on standing.  Her Physical Therapist would press slightly down on B's hips to plant her heels down on the ground.  Bebe did so amazingly and would stand on her own for a good 4 seconds.  So, when Chad got home (about 1/2 way through the session), we wanted to show him how well B had done.  So, her Physical Therapist was showing Chad the technique and all she took her hands off of Bebe's hips.  To which, B decided to take like 3 steps towards Chad all on her own.  We all just sat there wide eyed.  FIRST STEPS, SERIOUSLY!!!  So, her Physical Therapist was like "We were working on standing, but if you wanna walk....."  It was so funny & so sweet that Chad & I were both there for her first official steps.  I am so very proud of her.  We continued to work on it & are still working on it.  She is standing better and better & we know she'll be off and running soon enough.  That kid is amazing.  Her Physical Therapist suggested we get some good supportive running-style shoe to help her pronation (her little inner ankles were almost touching the ground when she stood).  You can see the picture below of her "big girl shoes".  It took her a few days to get used to them, but now she loves them.  Good thing, since she has to wear them like all the time.  :)  

Also, when we went back to the doctor, we verified that she hasn't really gained weight since November.  She is still holding strong at 14lbs.  So, we will be going to see a pediatric Gastrointerologist and a Nutritionist.  Since her sweet little heart is all better, I'm ready to dose this kid up with some calories!  She is still eating, which is sort of a miracle in itself (many WHS kids have PegTubes).  We will see what they say about it. 

We also have decided to participate in the Walk Without Limits Walk to help support United Cerebral Palsy of Birmingham.  Although Bebe does not have Cerebral Palsy, UCP Birmingham facilitates "Hand in Hand" (http://www.ucpbham.com/our-programs/hand-in-hand.html), which is B's Early Intervention Program.  They provide Bebe with in-home Physical Therapy, Occupational Therapy & Speech Therapy at no out of pocket cost to us.  I can not really express how important this is to us, since precious children with special needs tend to have so many medical bills.  Without this program, I am unsure of how much therapy we could actually provide for her.  Hand in Hand bills the insurance and UCP's funding continues to provide services to us when insurance stops paying these services (there are generally very specific and narrow limitations to therapies under most insurance plans).  B has been in the Hand in Hand program for an entire year and has truly been an integral part of Bebe's ongoing developmental successful.  They help teach us how to most effectively teach her.  I understand that many state budgets are being cut, which appear to be filtering down to this amazing program. 

If you feel led to help support our efforts, please visit our fundraisting page at http://www.firstgiving.com/fundraiser/bevynmaple/race-without-limits.  Also, if you'd like to walk with us---PLEASE let me know.  We would LOVE LOVE LOVE to have you with us! 

Thank you all for the prayers & support.

..let the blogging begin.

Well, here we are.  I finally started a blog to chart the amazing journey we are walking through.  As you can see, I have pulled all the old posts that I had listed on Facebook over to the blog.  I definitely feel excited about being able to share our journey and our walk with others.  And to be quite honest, it's sort of therapeutic for me.  I know we are not just walking through this for us, it is for others too.  So, let me sort of catch everyone up to date. 


Spiritually: Chad & I are coming together for what we are calling "our crazy prayer".  We are praying for full & complete healing of Bebe.  Head to toe, inside and out, whole and complete.  It sounds crazy, we realize.  But, it's not too big for God.  So, hey, why not just go ahead & believe in something that can ONLY be done by God.  So, we are not only praying, we are believing.  And if His plan is even BIGGER than just a mere healing---that's good too.  Ultimately, He has some sort of plan for B.  I can't wait to see it all unfold. 


Medically:  We have a wealth of doctors now on board to face the medical side of the syndrome.  We, of course, have her pediatrician.  We don't see her much more than the average child, except for this time of year.  Bebe gets a Synagis shot each month.  Synagis is also what you may hear me refer to as her "platinum shot".  That would be because each month's dose is about $2,000.00.  Yes, you read that correctly.  Thankfully, she only has to have it about 5 months a year.  Synagis helps her body combat RSV.  If she were to get RSV, the shot would help make her case less severe.  Last year & this year, RSV could be fatal for B.  So, we get this shot to keep her a little safer.  Next, we have been put out to about every 9 months with her Cardiologist.  That is down from about every 1-3 months.  Since the surgery was so successful, they feel we can back off follow up visits.  We also have a geneticist on board.  He seemed extremely pleased by how well she was doing & her overall strength.  He set us up with a Neurologist and an Endocrinologist.  We will see them in the summer.  He also explained that one of the biggest fatal complications with WHS (Wolf Hirschhorn) has to do with renal issues.  So, he set Bebe up for a renal ultrasound.  The ultrasound showed "some bright spots".  Because of this, they want us to follow up with a Neurologist.  They said they did a little research and found another little girl with WHS who also showed these "bright spots" in her ultrasound.  They followed her & found that by about 5 years old, the spots had completely gone away.  She had no renal issues.  So, we are just praying that whatever these "bright spots" are (which my dad calls her fairy dust) going to just disappear.  God can do it, no biggie.  The way we view it, we don't mind getting new doctors on board.  We view it as a bigger audience to watch what God has in store.  So, bring em on!  Let's see.....I think that is all of our medical team.  The ones we have met already are great.  They all have a similar pleasant surprise to them as they watch B flourish.  Her pediatrician is a believer already, and so I think she REALLY understands that it is all God---to HIM be ALL the glory!  And we thank Him for our fantastic medical team to help us out. 


Developmentally:  We are now working with physical therapy, occupational therapy & speech therapy.  We have the great opportunity to work with "Hand in Hand" and they are simply amazing.  Bebe learned to sit on her own by 11 months, she is standing for a few seconds by herself, she is instigating attempting to walk, she is babbling & jabbering......she really is remarkable.  WHS is quite broad spectrum and all the amazing people with WHS are different.  There are WHS folks who are unable to speak or walk, there are WHS folks that are able to speak in short sentences & help with daily functions.  Heck, even "average" children's learning rates are quite different.    So, it is similar in the "special needs" arena, as well.  I am encouraged that B is really progressing & becoming more "present" every day.  The first year, she was quite disconnected from the world.  At home & with family, she would open a little.  But, she has really come out of her shell.  We are so encouraged by her fabulous progress.  There is just no telling how much Bebe is going to end up being able to do. 


Life: Life is challenging & busy.  But, that little one is so worth it.  I guess it just feels like life as usual.  We don't really know any other way.  When we are overwhelmed, God always finds a way to encourage us.  We are so very blessed.  Sometimes I almost can't contain my emotions about it.  I am so proud of B & I am so excited about what God has done and is GOING to do........can hardly contain it! 

..open heart surgery 0, bebe & God 1

I love going back and reading this story from the beginning.  It is so obvious that God has really been in this the WHOLE time.  Here we are, almost 15 months after our world changed completely.  Our sweet Bebe has truly been more of a trooper than we can really even put into words.  And, there is no way we can even begin to give God the glory that He deserves.

November 4th was an amazing day.  B had her open heart surgery to correct her VSD, ASD & Pulmonary Stenosis.  She did amazing.  In fact, she did so well, she was off of the ventilator within a few hours and they were trying to kick us out of the ICU first thing the next morning.  She had surgery on Thursday and went home on Sunday.  I still can’t wrap my head completely around that.  Through the entire surgery and stay, it was so evident for me and Chad that we were being deeply and sincerely prayed for.  Thank EACH of you who took your time and efforts to pray for us.  It was TRULY felt.  We were so protected against fear.  I rehearsed that moment of giving Bebe to the nurse to take her back to the O.R. about a million times in my head.  And every time I’d rehearse it, I’d feel this emotion and pain whelm up in me.  I would almost be paralyzed by how scary that exact moment felt in my mind.  Funny, that morning, it wasn’t like I was just putting her in the arms of the nurse; I was really putting her in the arms of God.  And, to be very truthful, it was almost easy in the moment.  That’s TOTALLY God right there!  We were so calm and peaceful during the entire process.  Chad and I would quietly whisper to each other during the wait that we knew God had some serious peace on us, because we were so calm.  Rationally, we knew that didn’t make sense.  We knew it wasn’t natural, it was SUPERnatural.

The night before her surgery, God gave me the most precious time with my little girl.  I went into her dark bedroom and had the opportunity to quietly rock her and pray over her and the hospital staff.  It was clear to me that she knew something was going on, on some level.  The days before and after surgery, she saw TONS of her angels.  The angelic activity was more than normal.  (Bebe often watches her angels; she has since she was wee tiny).  She would look off in the room and just giggle.  She’d follow “something” across the room and just giggle at it and smile.  I knew she was watching her angels.  I would tell her not to worry, that even when Mommy & Daddy couldn’t go with her into surgery, they would be with her the whole time.  So, that night, as I quietly prayed over her, she was very aware of me and her “invisible friends”.  It was then I felt stirred to pray the absolute most difficult and painful prayer I’ve ever prayed.  I told God, out loud, from the depths of my heart what I truly felt in that moment, “God, if it was only 14 months that You gave me with my little angel, I will say thank You.  If You give me 14 years with her, I will say thank You.  If you give me 90 years with her, I will say thank You.  Tomorrow isn’t promised for any of us, and I truly appreciate even a moment with this precious gift of a daughter.  She has forever changed me.” I still get misty eyed, because of the truth that I’ve realized over this last 15 months.  To TRULY let her go and give her to God meant COMPLETELY.  That meant it was His plan, His time and His purpose, not mine.  That was a difficult place to get to, especially when I realize that could ultimately mean healing in the form of being heavenly bound.  In fact, I have to get there over and over again as time goes on.  I always remember that she is HIS first and foremost.  I couldn’t love her more, my heart would burst, but it doesn’t hold a candle to how much He loves her.  All in all, He has already accomplished great things in her and has more in store.  We were able to share the love of Christ and her amazing story with staff in the hospital.  And we were able to take home a healthier child than when we came in with.  Her recovery is going well and she has been a great patient.  I have really enjoyed the extra time I have gotten to actually enjoy her.

So……15 months and there’s still been so many questions.  I think all of us were hoping that the heart condition was the reason for her small size, slow growth & delayed development.  Chad & I have always had our suspicions that the heart condition was a symptom and not the cause.  And our suspicions were found to be true when we were contacted last week to advise us that some of her additional genetic testing was completely and they finally had a diagnosis.  I remember sitting there thinking “okay….here we go….we have a name, a reason, a direction, SOMETHING”  The genetics lady proceeds to tell me that B has been diagnosed with an extremely rare genetic disorder called Wolf-Hirschhorn Syndrome (also known as 4P-).  **Now before any of you go and “google” the syndrome, please allow me to say some things first.  These things are extremely important to us.**  Please know that Chad & I have done some research and we are fully aware there are some statistics, concerns, risks and scares about this syndrome.  In saying that, we also intimately know, serve and trust God, Who is far bigger than any of them.  And our faith is in Him.  See, our precious child has overcome every odd that has been presented to her.  Many of her doctors didn’t expect much from her in the beginning.  Some of them never thought she’d make it.  But see, our God is greater.  She did make it, and not only did she make it, she’s been knocking it out!  Why?  Because no one, and I mean NO ONE writes the journey of our child, except for God..no doctor, no website, no research and no statistic.  God is THE God of her journey.  So when the genetics lady says “She’s been diagnosed with Wolf-Hirschhorn.  I’m so sorry; I know it is probably not what you would have liked to have heard.  And, I want you to know that you didn’t do anything wrong.  This is just how she is.  You didn’t do anything wrong during the pregnancy and you didn’t do anything wrong since she’s been born.”  I suppose my flesh felt good when she said that.  That deep mommy aspect needed to hear it wasn’t from drinking too much caffeine or forgetting my pre-natal vitamins a day or two or being sick or not finding out I was pregnant until 8 weeks in.  But far more than that, I actually had one of those “out of the abundance of the heart, the mouth speaks” moments.  Because, I instantly responded in love and peace (which I assure you was God in me, NOT just me) saying “You’re right, she is exactly who and what she is supposed to be.  Because my God knit her together in my womb and NOTHING was hidden from Him----not even the arm of her 4th chromosome.  And I can only believe that He knew this and has a special plan and purpose for her life.”  To which I heard a “well, okay” from the other side of the line.  Anyone who truly knows me knows I am as transparent as possible, so please understand; I am being very transparent in this.  The hours after that call were definitely emotional.  I mean, I’m only human.  Having to explain the news to my amazingly strong husband (who God had already prepared to be the “strong one” that night) caused any underlying emotion to flood out of me.  During those hours, I was again met with the realization that her life, our life, parenthood, none of it looked like what I expected.  I didn’t remember dreaming of having a special needs child when I was a little girl.  It was like someone had a dimmer switch on all those hopes and desires I had for my daughter..big dreams and little dreams.  Not too long after finding out, I needed to go to the hospital to visit my brother that night and I cried the entire trip.  I spoke out loud to God and told Him how I wanted her to be able to communicate, and crawl, and walk, and go to school, and participate, and make friends, and go to college, and fall in love, and be independent, and get married, and be a mommy……….and all of those visions were dimming.  To be honest, a part of my heart dimmed in those moments, too.  I was angry that I couldn’t just have a healthy child like “everyone else” (like EVERYONE in the world has healthy babies or something??).  I was hurt that God hadn’t just done one of those lightning bolt healing jobs on her.  I knew He was able.  I had so much faith, but He hadn’t done what I wanted.  And deeper still, I was afraid of losing more than just my dreams….as I pressed deeper into my emotions and pain, I realized the biggest fear still came back to my fear of losing my daughter whom I love so dearly.  It was an awful and painful drive.  But that still small voice and comfort wiggled His way through the chaos of my flesh and spoke to me.  There have been few times I can say I truly felt like I heard the voice of God clearly.  But this was one of them.  As I went over all MY dreams and MY desires for Bebe and how they all felt dashed.  I felt Him ask me what the heart of my pain was.  And the only thing I could really figure out was that---I am a mommy.  I want what is best for her.  I want her to have the best life possible.  I want her to be the best Bebe that she can possibly be.  And that same voice simply said, “Then what’s changed?”  Y’all, I have to say, it was one of those moments in life.  One of those moments when it all made sense.  NOTHING had changed.  I still want the core of all of that for B.  I still want the best for her.  I still want her to have the best life possible.  I still want her to be the best Bebe that she can possibly be.  So in that regard, NOTHING has changed--except for me.  God is continuing to teach me how to pull my own expectations off of B.  And the beautiful thing is, these last few days, I have fallen more in love with her--the real her--the one that isn’t being measured up to what I expect of her.  I am just allowing her to be her----and she is amazing.  How could I have thought I would be disappointed?  I will say, she will be expected to do her absolute best.  That is not a negotiation in our home.  She will be expected to not give up and to give her all.  But what that looks like----well, is what it looks like.  And I have been again overwhelmed by humility and honor that God looked out over time and space---and He saw Chad & I---and He said “THEY can do this.”  It is an HONOR to be her mom.  It’s an HONOR that God thinks we are strong enough for this.  And there are moments and days that I fear He overestimated us.  But, He always gives us enough strength, energy, drive, courage & perseverance to keep pushing ahead.  She’s so worth it..at only 14lbs, in only 14 months, that child has touched more lives than I’ve been able to in almost 31 years.  And that is worth the uphill walk.  To share just ONE of the most recent “GOD MOMENTS”—the Wednesday before Thanksgiving (the day after my initial emotional rollercoaster day), I woke up with renewed hope.  I called Bebe’s pediatrician’s office and leave a message with the nurse that I have grown to really appreciate.  I was explaining the syndrome so B’s doctor could go ahead and be researching it.  And I told the nurse to please tell the doctor that we are not in denial, we fully understand the statistics and the syndrome…and we are still okay.  I told her about the story of the phone call with genetics (as I explained it above).  And I told her what I said in response, about “You’re right, she is exactly who and what she is supposed to be.  Because my God knit her together in my womb and NOTHING was hidden from Him----not even arm of her 4th chromosome.  And I can only believe that He knew this and has a special plan and purpose for her life.”  There was dead silence on the line.  To which, I thought, “Oh Lord, I’ve offended her---have I talked about You to her before?”  And a small “Thank you, Lori” came over the phone line back to me.  I answered her statement with the same words in a question…”Thank You?” She said it, again.  “Yes.  Thank you, Lori.  We recently lost our child to a chromosome defect.  I’ve made peace with it before, but God knew I needed a little extra dose of peace today of all days.  So, thank you.”  I had to sit down immediately.  I was crying, she was crying.  In that moment, it clicked……THIS is “why”--for moments like these--for lives like these--for the opportunity to share God’s glory and peace.  And if it brings honor and glory to God to walk through this journey----it’s worth it.  Not only is it worth it, but I’ll do it every single day for the rest of my life if it’s for His glory. Our daughter’s life is bigger than just one person or just one life.  She seems to touch every life she comes into contact with.  So, who am I to question why God does what He does?  Who am I to accept what man says over my child?  Who am I to underestimate God’s plan and purpose?  NOTHING was hidden from Him when the God of all creation personally and intimately knit Bebe together.  NOTHING.  And I am excited to watch my child continue to beat every odd given to her, to continue to reach innumerable people and to continue to fulfill the destiny that even I (yes, LORI, her own mother) underestimated.

Look out, world…our little B is truly our warrior princess!

The day after surgery

2 Days Post Op

Discharge Day

Recovering by playing outside

She's such a turkey!

Christmas season is upon us...and she is such a special gift under the tree. :)

..can't believe it's been a year already!

As for Bebe's development, we are still making progress.  I am so very proud of her.  She loves to stand (with our help) and can sit up for about 1 minute all by herself.  She is still working on crawling and we feel confident she'll eventually figure that out.  We are still working with physical therapy and occupational therapy.  We also may start speech therapy in the next few months.  She is more alert & "present" by the day.  I am constantly amazed by her.  Our biggest news is that on Monday, we had a cardiology appointment and he has told us that he feels we are finally to the place where the benefits and the risks of surgical repair are finally balanced.  He urged us to go ahead with open heart surgery before the on slot of respiratory season is upon us.  So, he has actually asked that we do it before the end of October.  The recommendation for surgery didn't come as much shock, since God has been preparing my heart for several weeks to hear him suggest surgery.  Thankfully, God gave Chad & I a peace through the appointment.  I think the only surprising aspect was more about the fast turn around time on when he wanted her to have it.  I expected he'd give us 2 or 3 months to prepare, but instead he has given us only about 2 or 3 weeks out.   Even expecting this was coming, I barely made it to the car before the tears came.  And honestly, those tears are just now starting to slow down when I talk about it.  I kept telling Chad, "these aren't fearful tears".  It's like, for a year they have said "let's wait and see", "let's take another look at her", "let's keep watching her".  Being a task oriented person, someone telling me something I can actually do is some level of a relief.  We don't like the method by which to get to the other side, but we are excited about what the end result will be like.  Chad absolutely hit the nail on the head when he voiced "Does open heart surgery sound scary?...Yes.  Does it scare me to have to make the most important decision of our life and her life?...Yes.  But most of all, what scares me the most is that she isn't really mine to begin with."  Chad and I learned from the moment she was born that we had to release her to be cared for FIRST and FOREMOST by her loving, amazing Creator.  She really belongs to Him far before she is ours.  As difficult as it is to even fathom, He loves her exceedingly more than we are even able to.  So, who better to entrust her to?  Easier said than done some days----absolutely!  But, God is always so good to give us Peace.  I love how Chad put it that we are trying to encourage B to be the very best Bebe she can be, and in that, WE sometimes have to make very difficult decisions.  We both feel God is leading our family through this for a reason.  Chad & I prayed before B was even conceived, throughout the pregnancy & since she was born that she would change lives for Christ.  We prayed that she would be a world changer and a warrior for God.  I never knew that God would start so early on fulfilling that prayer.  It's amazing that since the very moment she was born, she began changing lives.  This is all a part of her story---part of her testimony---and honestly, that child is FEARLESS!  She amazes me.  She will learn her own story and will continue to change lives.  I am really honored that I get a front row seat to watch her continue to overcome every attack that the enemy seems to throw at her.  All the while, God is molding all those challenges into good.   I definitely have had an overwhelming time about the faith that God has in Chad & myself.  He must really think we have enough faith and trust to be able to not only fight these battles, and not only succeed in these battles----but OVERCOME them.  I have told Satan out loud a few times, he picked the wrong family.  And I have said numerous times that every faith and trust building season I've ever gone through in my entire life was preparing me for this very season.  We may be struck down, but we are NOT destroyed! 

We have gotten her open heart surgery scheduled for November 4th .  The surgery will repair her VSD.  I am still unclear on if it will also fix the slight valve defect.  That defect wasn't as big of a deal as they thought before the heart cath.  But, they may feel it would be worth fixing while they are in there.  The cardiologist (and we) are still unsure of what other after-effects the surgery may facilitate.  The surgery may or may not assist with her gross motor skills.  The surgery may or may not assist in her growth.  At the end of the day, please know that Chad & I are assured and confident that she is perfectly made how God intended.  I want you to understand that we will stand against and will fight against any attack by the enemy on her health.  But WHO she is-----well, she IS exactly who God made her to be.  She is amazing, she is strong willed, she is determined, she is laid back, she is a ham, she is unique, she is a beautiful expression of God's personal handiwork.  And well, I'm pretty darn proud to be her mama.  :)

Please join with us and pray:
a) B's will, fight, drive and determination to knock this surgery & recovery out of the park
b) The surgeon & staff would simply be facilitators and vessels of the Great Physician's hands and that Jehovah Rapha, our Healer, would heal her completely
c) Peace for Bebe, our loved ones and for us
d) That Jehovah Jirah, our Provider, would indeed provide and cover us on every side
e) That any plans of the enemy will be crushed by the stripes that my Savior endured and the Healing that He provides.

God has amazing things plans for our lil warrior princess..LOOK OUT WORLD!

not sure there's even a word for how insanely cute my lil girl is!

what a glorious day..we brought our 4 lb 7 oz/18.5 inch long sweet bebe
home from the hospital..(see next picture)

(see prior picture)..one year later + one MIGHTY Creator! WATCH OUT, world--she's a
fighter & she's growin! (13 lbs 8 oz/27 inches long)

..easter, spring & so on

i,first of all, would like to genuinely thank the amazing people in our lives for being so concerned & praying so hard over us, our family & especially bebe..we are currently involved in an excellent program called hand in hand & we think they are simply wonderful..b is doing physical therapy every other week & will start on occupational therapy next month..she has made great progress every single day..she is so tough..i am remarkably proud of her..and i am so appreciative of such a great program like hand in hand..in regards to her sweet and special heart, i had not heard anything in almost a month (so much for calling me back in a week, huh?)..i knew i had been avoiding it because i have a tendency to hide from things i don't want to face..so, i hid......for a month..there was a moment that God gave me that was special and really moved me..i was in her dark room rocking her at the end of the day..i was looking at this amazingly beautiful gift and was thanking God for her..i was telling her how amazing she was & why (yah, we do this every night--laughs)..but then something in my heart was stirred..i thought about how i hadn't heard back from the doctors after the heart cath procedure and how i continue to slough it off to "no news is good news"..we were being asked so much on how she was & if we had heard anything..our family was being asked, our friends were being asked..we are still blown away by how many people out there care for her & for us..it is so humbling..and i kept thinking how i wish i had something to tell them, but then again, i didn't want to know the answer..it was then that i realized i hadn't let her go at all..i thought i had given it to God, but i could feel Him stirring my spirit..my heart felt "do you really TRUST God?" and my reply was "i have so much faith that You can do this God, You can heal her."..and the question remained "but do you TRUST God to do it?"..hmm, it occured to me that faith & trust are NOT the same..my pastor tells a great story about a man who would walk a tight rope across niagra falls..people would stand amazed that he could do this & his act was amazing..he had done it so many times, it was almost second nature, and with that his act became almost normal..so one day he asked if the crowd thought he could carry a person on his back across & back..the crowd (knowing & seeing it was second nature to him) cheered that he absolutely could & were so excited about it..then the man asked who would volunteer to be that person on his back..the crowd wasn't so loud that time..see, the had faith that he could do it, but didn't trust him to actually be that person..ummmm, realized that was me..so in that still quiet time with my daughter, i realized that to truly give her up to Him meant even if HIS plan was to take her home..it was extremely emotional..i realized i had to truly give her, this situation & all the other situations concerning her to Him..God sweetly gave me a Peace that He truly loves her more than i could ever begin to..and i know that He will do what is best for her and through her..i kept thinking of abraham..and how i wish so desperately i could have his faith & his trust like he had with issac..i mean, if you haven't read that story----ohh, it's good..all he knew is that God told him to do something & he trusted that God knew what he was talking about..man, talk about faith & TALK about trust..so, i had my own personal realization about her & how God has an amazing plan for her..its not my plan..its not chad's plan..its His plan..and it outdoes ours by leaps & bounds (to say the least)..so, it was then i had to face the fact that i needed to stop living in fear & face the situation..i called and left a meesage for someone to call me back on a monday..i asked if we could make a consultation with her cardiologist to discuss what was found & what the recommendation was..i wanted to discuss our options, the risks of everything & what he thought..well, the phone didn't ring from uab until friday..when i answered i thought it would be the doctor or an assistant..bless this lady for calling, she says "hi, i'm calling to set up b's surgery..we have openings in june & july"..i can only explain that it felt like someone kicked me in the stomach..it took the breath out of me..i could hear that voice in my head say "did you mean it? did you mean it when you said God could heal her miraculously or though surgery?"..i had to push back emotions, because it wasn't the time for that at the moment..i tried to focus on just talking to her & would process it all later..i calmly explained to her that we had not even talked to a doctor, no one has even told us anything at this point & we were not prepared to set up surgery..bless her because the next thing she said was "okay, did june or july work better for you"..i literally had to interupt her to tell her i was sorry but we were not setting up surgery today..she sort of seemed stunned, but then i think she started listening to me after that..thankfully she left a message for bebe's cardiologist to call me back (she was calling on behalf of the cardiology surgeons, not the cardiologist)..so when i spoke to her doctor on monday, he told me to explain where we were & what were our thoughts..i told him i felt bebe was fairly asymptomatic..i felt she was doing really well..she had beautiful color, no grey or blue tint..she eats well..she has good stamina..she is growing well (because you must understand it isn't fair to compare her to any other baby her age, she was teenie tiny..but she has followed the growth curve exactly like any other baby)..she doesn't have respiratory issues..she hasn't been put on any heart meds or even a diuretic..i told him i was confused that her body was coping so well at this point..i explained that chad didn't have a spiritual peace (i even mentioned i didn't know how he felt about that, but we would need a peace about it before moving forward)..i explained i could not differentiate between my spirit & emotions, so i didn't have a spiritual opinion at this point..i did tell him i couldn't justify it medically, though..and to my surprise, he agreed with me..he said we wouldn't be "losing out on anything" by just waiting & watching her for a while longer..i specifically asked if there were any increased risks, recovery issues or complications associated with waiting..he said no, that the bigger she is, the stronger she is..we, of course, discussed how it is easier for a 7 month old to rest quietly in bed than it is a 3 year old..and that we may cross over into a situation where she may have memories of it..he said her having memories of being in the hospital is the least of his concern though (chad said we'd just get her into counseling or call dr phil *laughs*)..he said he wanted me to know that honestly he didn't feel it was going to close on its own & that he still feels that one day we will be making the surgery decision..he also says that medicine is not an exact science & that he is surprised sometimes..he sweetly said that he would love for b to be one of his surprises..he also pretty much said she doesn't make sense "on paper"..hahahaha, i love that! i love that they don't reaaaally understand why she is doing so well..hmm, i know why----one word----GOD! it is so encouraging to know that He has this whole thing under control..and i still hear that voice "did you mean it? did you mean He could heal her either way?"..and today, i can say, "yah, His will, His time, His method, HIS GLORY no matter what!!!!! oh, He's doing something------something BIG---------NOTHING was or is hidding from God..and i am confident in His best interest..and i'm continuing to work on the "trust" part of things..my little girl is a lil trooper & my lil fighter..she's pretty strong..probably stronger than me..but don't tell her i told you. :)

ps----thanks again, don't EVER think your prayers don't matter or that they aren't felt..because they are & we couldn't do this without y'all! :)

our lil sweetpea in her Easter outfit! :)

why yes.....yes i AM this flippin adorable!!!!!!!!

she reaaaaaally gives looks like her mommy!

...5 more minutes...just 5 more minutes...pleaaaase!

i needed these because my smile lights up the room!

..heart cath

Okay, WOW it has been so long since i have updated this...i do truly apologize! our sweet little bebe is doing well...she is 6.5 months old now & is 10lbs, 12.5oz & 23.75 inches long..what progress, little one!!!! she is still not on any major medicine on a regular basis..one thing we have been having to do is she has to get synagis shots once a month throughout rsv season..the synagis is used to help her body if she were to get rsv...anyways, it is a $2500/shot situation that she gets monthly...and the process of it is currently the bane of my existence...thankfully, she is well worth the hard work, time, energy & large bill..at the same time, i will be reaaaaally glad when she doesn't have to get it anymore...april should be her last month...the nurse said something about her being a candidate for it next rsv season..i told her to please not tell me that & just let me enjoy the time away from it...ultimately, health insurance, synagis, doctor's appointments, consultations and general health care situations takes up much of my free time..i call it my part time job...hahaha...next big information is that bebe had a heart cath on friday to help us determine what exactly is going on...they felt like an internal view would help us to determine what our next step should be, if any...b did well, i am never ceased to be amazed by that little thing...me on the other hand----had a lot of Grace on me that day (thank you for the prayers for me too, i sure did need it)...i can say it was one of those moment that i have from time to time that just reminds me "k, yah, you are TOTALLY a mom"...i truly can NOT put into words what i felt as she started to come out of anesthesia and would cry in a way i had never heard...it was like my insides were being ripped out...i just wanted to scream at the top of my lungs for someone to fix it...and i knew i couldn't fix it...i had ultimately allowed it...i signed the release to let these people do this...and here she was, hurting...why? because it is for her overall well being, maybe not that day, but down the road...because i understand things in a different way than she does...funny how God yet again reminded me of how He must feel when He sees us hurting...He loves us (and her) far more than my little heart could ever love...can you imagine what it must feel like for Him to hear us cry out to Him...how much He must want to come and simply rescue us from our pain...why doesn't He? because He sees the bigger picture, He understands on a Higher level & He knows it is for our best...does any of that make it easier in that moment of mommihood where i simply want the problem to just disappear, well, not really...but, at least God is teaching me through this...i feel like every day, God is showing me more and teaching me more through little bevy...i still really wish He would just heal her...and ya know what, He surely can...i believe it with every ounce of who i am...i also trust Him, whatever His plan is...i trust HIM...so, chad & i are already praying for God to give us guidance and wisdom on the decisions we will be making when given the recommendation from the cardiology team...they will be meeting on friday & b's case will be discussed...they will then recommend to us what they feel is best for her in the immediate or "down the road" future...we know God will give us wisdom (even beyond our years & experience)...we would like to sincerely thank each of you for so much love & support y'all have all shown to us...we are so humbled that so many people love us & love our little girl...thank you so so much, y'all! we can feel your prayers & support!!!!

we're both recovering in the bed 2gether

heeeeeeey!!! look who's awake!!!!

..cardiology update

we went to the pediatric cardiologist today..bebe weighed 5lbs 7.5oz, so she's still growing..the doctor didn't have much additional to share, except he did NOT feel like he needed to put her on any medications, which makes us happy..he also said it it is too early to tell if the vsd is closing on its own..we will be heading back to them in 3 weeks..he feels that the abnormal valve is really assisting in the fact that it is reducing the amount of excess blood going to her lungs..he also said that once the vsd has closed (whether on its own or has to he surgically patched), the "abnormal valve" will need to be fixed..its funny how God works..this "abnormality" is giving us more time..either way..more time for her to grow and her body to close the hole or more time for her to grow to be able to tolerate and do better if surgery were to needed..so, overall, we still feel positive..we feel confident that God is going to make her whole..we'd love it if God would do that supernaturally..we also know that God sometimes uses surgery to heal..so, we are confident in God's plan and purpose for this situation..we are trusting in Him! :)

..the pregnancy, birth and early days

so many people have asked me about different aspects of bebe's situation..so, to explain it all, i'd need to start from the beginning..

while i was pregnant, our precious little b had been measuring a bit small and then at the end, she started measuring quite small (2-3 weeks smaller than the average baby at that gestational age)..so, my ob team determined it would be better to induce me at 37 weeks and get her out of what seemed to not be the best environment..she was considered "i.u.g.r." which means "intrauterine growth restriction"..i had a really good labor and very fast delivery (wasn't fun, but wasn't that bad at all)..she was born quite small and alittle dazed..she actually didn't cry for over an hour..she was awake, but just sort of lethargic..as a standard work up due to her small size and calm disposition, they called in the nicu team to do an evaluation..they checked her glucose (blood sugar) and it was too low to even get a reading..so, they actually immediately admitted her based on the glucose level..she was on an iv to help regulate her sugar for 2 days..so, she was not able to eat when she was on the iv..also, once she was in the nicu, they go over the babies with a fine toothed comb..so, when they heard a heart murmur, they did a chest ultrasound and saw the small hole in her heart (which we found out is actually 2 holes, an atrial septum defect/ASD and a ventricular septum defect/VSD)..they feel they will possibly heal on itself, but we will continue to watch them..we are praying that God will completely heal her heart..then they also did a standard head ultrasound (due to the iugr diagnosis) and found the fluid filled cyst in her brain..the neurologist decided they wanted to do the mri while she was in the hospital..so, the results from that showed it was in one of the best possible areas that has a decreased chance for developmental issues, but we will watch her very closely and make sure she is up to the average developmental measurements..we are still praying that God will completely dry this cyst up! also, they ran a full scale chromosome panel to make sure they weren't missing some sort of disorder or syndrome that caused the whole situation..there is an initial panel run that takes like 3 days to get the results and the other more in depth one takes more like a month..the initial results ruled out the major syndromes (like downs, etc..)..we will have to wait on the rest of them until late october..also while she was there, she was on and off the bili-lite for jaundice..

chad & i were COMPLETELY covered by God's Peace and Grace..although our emotions have been all over the chart, our faith feels secure..we knew then and still know now (as we face the potential of follow ups) that God knows and loves bebe more than we will ever be able to..nothing was or is hidden from Him..we know that God selected us to be stewards over her and her life, but she is not ours--she is His..and so she is already in His hands and that is the best place for her to be..we are believing in her FULL healing from anything that would make her ill..we also made the decision very early that she IS perfect, and we are not going to put our own specifications of what "perfect" is..she is made perfectly by God..no matter who she is or what diagnosis they may come up with..we are not in denial of anything, simply handing over our daughter to our (and her) Creator..we will do all within our power to take the best care of her and make the best decisions for her benefit..we are still praying over the steps we are going to be taking now and in the future..it was a long 7 days waiting for her to get to come home, but was very worth the wait..

now that we r home, we r doing well..we are getting settled into a general schedule..its going pretty good..we've been to her 1st pediatrician appt and her 1st pediatric cardiologist appointment..right now, she has been gaining about an ounce a day, which both doctors are encouraged by..we will follow up with both over the next few weeks and will also meet with a geneticist to go over those more in depth chromosome testing results..thankfully, the pediatric neurologist just wants the pediatrician to keep a close eye on her development and then determine if she needs neuro follow up..we think we may b back at the pediatric neuro at about 4-6 months or so..just to sorta check over her..we know that God is going before us and we know that God is leading our path and we know He is in control..

one of the tougher things is the fact we've had to limit access to her a good bit..the nicu dr and the cardiologist were VERY strict about visitors and handling her..both feel the only people who should handle her (touch/hold/kiss) is me, chad & our parents..and also advised us to try and minimize visitors..these orders cover -at least- 6 weeks and we will have to re-evaluate at that point..and WOW has that been tough to enforce! however, most people are understanding that it is for health reasons..waaaay too many germies out there these days! she's so teenie, a simple cold is way more for her to handle than an adult, especially with the medical concerns of her heart & lungs (caused by the heart situation)..not to mention things like stomach bugs or worse, the flu..she's inching up to 5 lbs (as of when i am writing this) and we want her to be gaining weight, not losing it..she needs to gain some weight and build that immune system for a while..my brother wished he was able to find gold "mc hammer pants" and a onsie that says "can't touch this"..hahahahaha..

overall, we are feeling God's touch on our lives..everything feels much more natural now that she's home..she's amazing!

thank y'all for asking and thank y'all for praying..to God be all the Glory! we usually are more "politically correct" about our beliefs, so as not to offend..but to be quite honest these days, we truly feel we have been stripped down to our core..so, what you see and hear is the core of us being shown..there are people who may not understand why we have Peace or why we can sleep soundly at night or why we talk so much about God..we know that He is what we have to hold onto..we have so much faith in God and His plans..we KNOW all of the good that WILL come from this will be to HIS glory..we feel people's lives may be changed and its amazing to think that our little girl (aka: our "warrior princess") is already effecting the world, just like we prayed over her before her arrival!!!

thank you for your ongoing prayers and kind words..y'all are so awesome! :)

on her way to her 1st doctor's appointment. :)