..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. :)