..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. :)