..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!!!!