Just Here

There's still no update... we haven't gotten the results from our blood tests back yet; we still don't know any more about Brinley's condition or what any chances of anything are... All of our time awake is still spent between talking to doctors and genetic whatevers on the phone, in the offices of said doctors and specialists, or with Emersyn trying to be normal.

I'd like to think that we're both supporting each other and taking turns being the "normal one" for Emersyn, but I know that Chris is handling everything way better than I am. He researches and asks questions that will help, while the only thing I can say is "why"... Why Brinley? Why Emersyn? Why us? Why our family? Why?

Chris amazingly goes from Daddy to questionaire to rock with very little breakdowns, tantrums, crying fits, or any of the other things that seem to fill my Emersyn-free time... He's incredible. I meanwhile go from just overwhelming saddness to anger to bitterness to pity to jealousy to feeling ungrateful... I'm told "it's okay" to feel all of those things and that "it'll get better" but that just pi$$es me off because how does anyone know that?!?! But I'm trying and there's still that sane part of me - albeit it's incredibly small and seems a million miles away - that keeps in touch with reality.

I'm trying. We're trying. That's all we can do besides wait... wait for answers, wait for results, wait for more information, wait... Wait.

In a Different Time...

... today's play would have been unbearably adorable. It is a testament to our strength as parents that Chris and I managed to get through our pre-dinner play with Emersyn and then dinner after Emersyn suddenly turned into a little mommy... this was the first time she's ever done anything like this with her dolls and she even said "bay-beeee" too. Needless to say that I've been crying since Chris took Emersyn upstairs for bed...

Playing Outside

We found this tent for super cheap at BJ's before Christmas, but it's so big (the piece we have out is only one of 3 or 4!!) that we are only now pulling it out for the first time... I'm pretty sure that the whole "playing outside" is pretty self-explanitory though so I'll just leave you to it with the pictures and video. And, of course, everything is at www.theswaderfarmily.shutterfly.com along with all the pictures and videos.

Thank You

We just wanted to say thank you to everyone for all the heartfelt messages, cards, flowers, emails, and everything... We are so grateful for all the prayers and for the incredible, thoughtful, wonderful, loving people that we have in our life. We hate that we found out how overwhelming those attributes are in all of you, but you'll never understand how grateful we are for it all.

The only "update" I can really give is that nobody can really tell us anything at this point... we're praying for the strength and the guidance we so desparately need, we're trying to keep Emersyn's life as normal as possible, and our days are literally nothing but trying to get more information about Brinley... If we're not on the phone with a doctor or genetic specialist, we're in their office or sleeping.

We know that Brinley can't get the heart surgery because her body won't be able to handle it and we're trying to learn what that exactly means for her. The # 10 deletion is just so rare though that there's not much anyone can tell us, and what we do know isn't good by any extreme stretch of the imagination. Chris and I have both had blood drawn to be tested to see if either of us carry a genetic whatever, so we'll get those results in a couple weeks.

That's it. That's all we "know" and so we just keep waiting for... something...

Happy Easter

We hope everyone had a very happy Easter!

It might not have been one for the record books by any stretch, but we got through it. The good thing is that Emersyn's so little, she won't remember what her parents were dealing with and won't ever know how much better (we think) her Easter could have been. Still, with a lot of strength that we didn't think we had (and yet keep finding more of) and even more help from Maw Maw, Pop and Cameron we think Emersyn had a pretty good day...

Bubbles

Well, this is the last of today's posts... Emersyn got to wear off that Rice Krispy Treat mix beofre we all took a much needed nap. We're not sure if Emersyn actually likes the bubbles, or just the excuse to play really hard with the dogs...

Rice Krispy Treats

Yes, another post from today... We started forgetting to be sad (as much as possible) with the eggs, so we ventured to making Rice Krispy Treats with Emersyn. There was a "recipe" for making them into eggs and we had planned on doing it anyways, so...(As always, there's more pictures in the April album on our shutterfly site.)

Easter Eggs

No matter how much we'd love it to, life has to keep going for us... Emersyn (obviously) needs her Mommy and Daddy, which gives us the strength to keep going even when we'd like nothing more than to curl up in bed and cry for days on end. Parents don't get that luxury...

So, we're getting ready for the Easter Bunny with Emersyn. My mom came over to "help" dye eggs with Emersyn... really it was to do it all while Chris and I tried to keep ourselves together and tried to enjoy watching our baby be a big girl, reminding ourselves that we "need" to enjoy these moments because we'll be even more sad later that we missed them.

There's tons more pictures on our shutterfly and the video is there too... http://www.theswaderfarmily.shutterfly.com

Brinley's Going to Be an Angel

The genetic council called... um, Brinley has a disorder so rare it's not even named. My baby girl has a name but the disorder that won't let her live doesn't... Um, it's a deletion of part of her DNA on the #10 chromosome and is so rare that there has only ever been 60 documented cases in the world in about 20 years. It's a 1 in 100 million disorder but our baby girl has it... It uh means that she has growth retardation and delays, kidney and urinary track problems, developmental delays and learning disabilities, severe motor skill delays, feeding and breathing difficulties, extremely poor muscles, she may not be able to talk or read or walk, of course there's the heart defects... It also means that she'll be so horrible disabled that they won't even do the heart surgery that she needs to survive because she couldn't handle it. Technically they can't tell us that we can't have her, but the doctors do highly suggest ending the pregnancy because of the suffering that Brinley will go through when she's delivered. We agree that at this point, no matter how horrible it is, it is the lesser of two horrible horrible evils that we suffer now and don't make her suffer with us later... We will talk to the genetic councilor today and find out when/where/what happens now. All I can do is to pray (when I'm not yelling at God for doing this to my baby) that Brinley gets a pair of gorgeous wings and a body that's just the perfect ideal of health and beauty when she gets to Heaven. I just pray that she's get to be an angel.

Happy Birthday Audrey!!!

Guess What I'm Doing...

CROCHETING!! :)

Well, I'm not technically making anything yet, but my super awesome and fabulous mother-in-law's book got here today so I'm learning the first basic stitches... I'm not doing to bad either. I mean, not that anyone can tell me otherwise, but it's only been about a half hour and my first row of stitches looks just like the picture in the book. That's got to be good right?!?!

Regina was totally right though - this book is perfect! It's so easy to understand and the pictures are wonderfully accurate. (THANK YOU REGINA!!!!!) And, I have to say that Chris is already enjoying the benefits of me doing crochet - he's happily watching basketball while I practice the chain stitch and single crochet.

I will say that I think I'm going to start with blankets instead of hats though... at least until I get better control of my stitches since a baby hat kind of has to be the right size, whereas if I make my stitches a little too tight it won't matter in a blanket really. But for now I'm just SO EXCITED and practicing the first two basic stitches. I can't get ahead of myself even if those super cute blanket patterns are calling my name already... I need to get comfortable with these stitches before doing a real pattern... right?!?! ;)

Patience is Not a Virtue

I'm so excited... I'm going to learn to crochet!! I know I'm such a dork, but I really am all kinds of excited about it. I mean, ideally I want to be able to make baby hats. Since we know Brinley will be spending time in the NICU she's basically only going to wear hats and socks for a while; so I thought it'd be really special if she was wearing hats that were made with all the love possible just for her... I mean, I've wanted to learn to crochet for a while - I fricking love crochet blankets - and this seemed like a great excuse to actually learn.

Regina makes gorgeous blankets and they are seriously perfect for bed/nap time because they're not only really pretty looking, they're really warm and with all the "holes" they're actually breathable if Emersyn (or Brinley eventually) gets it over her face while she's sleeping... Perfect! Plus, like I said, I just think they're so beautiful.

So, Regina found one of her really great books and is sending it down to me so I can learn to crochet. I'm very impatiently waiting for the postal service to process it and get it to me... but it's a really long time to wait! LOL! I've been looking up "easy" and "beginner" patterns for baby hats and blankets online already too. Not that I have any idea what I'm reading, but they all look pretty so hopefully I'll be able to do at least a couple of them. We'll see. For now I'm just staring at the hooks and yarn I got (yeah, yeah I already got a little bit so I'm totally ready as soon as the book gets here... but Chris wouldn't let me get the really fabulous yarn since I "have to practice first and then use the pretty yarn for the real things"; blah!) and trying to make any sense of the patterns/instructions that I printed. :)

Wabbit Huntin' & Chick Eatin'

Yesterday was soooo gorgeous out. Seriously, the weather was underestimated and resulted in a very sweaty Emersyn who refused to go inside... She saw one of the many bunnies that live in our neighborhood so we got to hunt for more. We also picked flowers (which were put into the rain run off thingy and jumped on pretty immediately) and broke lots of sticks (notice Emersyn's face as she grunts and struggles to help Daddy break that twig) and we even climbed a tree (which I'm sure will come back to bite us in the ass since Bird down right did not want to get out of the tree)... Then today we had a special treat - a Peep Nest! One of the classes at work ended today and a student made these little things for the class... It's a rice krispy treat molded into a round-ish shape with a little green dyed coconut sprinkled on it and topped with a marshmellow Peep. Super cute and Emersyn was 7 shades of stoked about this treat. It took a little convincing to try the rice krispy treat, but the Peep barely lasted long enough for me to snap these pictures. Needless to say, the Easter Bunny has been notified and Peeps will be one of the goodies in Emersyn's basket this year! Of course all our pictures and videos are up at http://www.theswaderfarmily.shutterfly.com and are even able to be edited, cropped, printed and all that good stuff. :)

Hanging Out Yesterday

Just a couple pictures of Emersyn from yesterday... She's starting to get a little more into coloring with markers (thank goodness for those Color Wonder ones) but still loves her blocks the most. Go figure - her mom and dad both would love to study/do architecture and l-o-v-e legos, why should she be any different?!?! :)

HAPPY BIRTHDAY PATRICK!

Finally Some Good News!

I feel like it's Christmas... Well, first let me say that we (Chris) talked to Emersyn's pediatrician yesterday and she sees no reason why Emersyn would need to have her heart checked out. Emersyn would only be at risk if it's genetic, and if it's genetic we'd know that Emersyn had something wrong. So, yay!

Now the really good news... The genetic councilor called and the initial amnio results are all negative!!!!!!! Granted there's still a small chance (2% or less) that the full detailed results we get next week has something, but we're pretty much out of the woods with the genetic disorders. The major ones that matched up with Brinley's markers are negative though!

WE GET TO HAVE OUR BABY GIRL!!!!!

Seriously, I feel like it's effin' Christmas right now. Of course Brinley still has the heart defect and will still need the emergency surgery... but we get to have her. She gets to live. After the surgery, my baby girl gets to grow up and be a normal kid, do sports and terrorize her big sister, and play with her grandkids... We get to have our baby. We get to have Brinley.

I can't even begin to full express our thanks and our gratitude for all your prayers and happy thoughts and everything... I mean, from our gorgeous niece hearing the baby has a problem and immediately getting on her knees to pray to the mother from gymnastics who teaches at St. Jane's and added Brinley to the morning prayers for her class - it's overwhelming to know how much love our baby girl has already. I know it's because of all those prayers that these results are negative and that Brinley has a chance at all. I know it's because of those prayers that we get to have our baby girl! Words will never be able to convey that emotional and appreciative feeling. Never.

Please, keep Brinley in your prayers so that she keeps getting bigger and stronger. Keep praying that our baby girl gets through a very successful surgery and a tough recovery. Please don't stop praying for her as there's still so much to go through... and thank you! ♥

One Day at a Time

Today sucked. Going to work and having to answer questions and go through Friday's appointment... it sucked.

My husband is incredible though. I think partly to make it easier for me, but mostly so that he could do something, Chris called everyone and talked to everyone and set everything up and did everything... Literally, he called Johns Hopkins and registered me. He called Annapolis OBGYN and made sure my files are getting transferred the second they have the glucose/blood test results from today. He made the Fetal Echo appointment at Hopkins. He talked to them about exactly where they're located, the best way to get there, the best place to park for all our appointments and delivery. He talked to our Primary Care to make sure everything is in place in case we need another referral to go to Hopkins. He talked to teh Center for Maternal and Fetal Medicine that we saw on Friday and made sure that everything from Friday had been passed to Annapolis OBGYN, that they were ready to pass along the referrals to Hopkins if needed, and set up a phone appointment/consult with the Genetic Councilor for tomorrow even if she doesn't have the preliminary results from the amnio. He even called Emersyn's pediatrician to ask about getting her heart checked out. He called our insurance company to make sure everything was set up and we wouldn't have any issues. He called the place that handles the disability for my company to find out about bed rest and maternity leave. Seriously, he's handled everythying!!

I got to talk to about it and cry some more... but I also got to drink the oh-so-not-yummy glucose stuff for the test and try not to yell at the happy nurses who were way to bubbly to be greeting someone like me. So, the test results for that will be ready in about 24 hours and the doctor said we should call the office around 2 tomorrow to get the results and also to have them send the records over immediately. Even the normal OB wants us to Hopkins as soon as possible... So, with any luck those results will be totally fine and my file will be to Hopkins tomorrow afternoon, which is also when we will hopefully find out the preliminary results of the amnio (hopefully totally negative)... Hopefully...

Keep praying for Brinley and we'll keep you updated on what's going on... and keep trying to distract you (and ourselves) with pictures and videos. Thank you for the prayers and positive thoughts too. It's the only thing we can do, so we just keep doing it.

Life Goes On...

The thing with having a child already is that life has to go on... I can cry and cry and cry over everything that my unborn daughter has to deal with and go through and has "wrong", but I still have another daughter that doesn't know something's wrong and expects life as normal. Well, life as normal as possible with Mommy doing the absolute bare minimum and Daddy doing triple duty to keep up... but normal enough.

And, since life does keep going no matter how much we wish it could just pause for us to deal with something, we went to my parents' house today like normal. Just me getting dressed and picking out something for Emersyn to wear was a small step in itself... My reward was getting to see my gorgeous girl discover the simple joy of Play-Doh. And for the first time in days, I smiled and felt not-sad.

I should also add a side note or two... Cameron is very much into "Army" and the whole camoflague thing; of course it's only more amped up having a Marine as an uncle. He gets everything he can that's related to "Army" (which really means Military to him) and so now has a whole get up of the "kevlar", the "flak jacket", the "uniform", a "microphone to talk to the Captain", and things like that. It's also hard to get him out of it all no matter if he's playing Play-Doh and sweating to death, or just watching tv. The second thing I should mention so that we don't look completely odd (as if the previous posts could possibly lead you to anything but a totally sane conclusion) is that Emersyn put the lego bucket on her head all by herslef... Cameron had a little "tin" bucket on his head but I couldn't catch it quick enough and then it was all I could do to catch Emersyn. She stood in the corner of the dinning room for a good 4 minutes straight with the bucket over her face giggling hysterically, before peeking out and running away from Mommy's camera... I probably could have gotten a few of those pictures or even a pretty funny video clip, but I was too busy laughing (yeah - I said laughing) really hard to grab the camera until it was almost too late. All the pictures from the Play-Doh experience are in the April album at www.theswaderfarmily.shutterfly.com like always.

It hasn't been an easy day, and I don't expect one of those any time soon. But, life does keep going and we're trying. I cry whenever Emersyn's not around and I'm sure that will keep going for a little while longer at least. I question everything and am almost waiting for another of my greatest fears to happen... but I'm also trying to enjoy my daughter and see the blessing in her like I did a week ago. I'm trying to keep praying since that's the only thing I can do, and I'm trying to be positive. Tomorrow will suck horribly when I have to go back to work and undoubtedly answer the "how was the appointment" questions from my work family, the "how are you and the baby" questions that will come from some of the regulars that don't live at my facility and the "are you ok" questions that I'm bound to get from anyone who looks at me... But I'm trying, we're trying. Please keep praying for Brinley.

Questions...

There's just so many questions... I mean, where do you start when you get news like this? I want to know why - why is my baby the one this happened to, why is my baby going to start off that way, why is my baby going through this, WHY BRINLEY? I want to know why Emersyn has to deal with it - why her sister, why adjust her life even more than having a baby sibling already will, why will she miss out playing with her mommy for months, why doesn't she deserve to just be a big sister? Why us? Why our family? Why my baby?!?!

And then of course there's all the medical questions - why? What happened? In our best case scenario, is the rest of Brinley's body getting what it needs? Is her brain ok? Should we be worried about her brain, her liver, her kidneys... Should we be seeing someone about that? Will she only need the one surgery? If her limbs are farther behind in size than her body, will it be noticable, will they catch up, is there anything we can do about it? What about her chin - will it be terribly recessed forever, can we fix it, will that cause problems with her speech or teeth or other facial structures? Can she wear clothes in the hospital, in the NICU? How long is the recovery in the hospital? Is it possible for this to happen again if we were to ever get pregnant again? Will Brinley be able to have "normal" children or will this be passed on to her babies? Can Emersyn have it, pass it on, carry it? Could Chris or I have something with our hearts and not know it? Will I have to have a c-section so the whole birthing process doesn't stress out Brinley's fragile heart? How will that work - will we wait until I start labor or just plan on doing it on a set date? Will I need to go on bed rest, when, how long, what's that entail? Can Emersyn visit her baby sister in the hospital? If not, how long or when will Emersyn be able to see Brinley? How long does the baby normally need to stay in the hospital before we can bring her home? After her surgery, will I have a bed to recover in somewhere in the NICU so that I'm with Brinley? Do I need to get a handicap hanger so that I don't have to walk far when I go to work or if I need to go anywhere so that there's as little activity as possible? What's considered "taking it easy" - not going for mile long walks or not walking to the mailbox, not picking Emersyn up or not holding her at all, being completely immobile except from the bed to the bathroom and back?

I mean, where do you start? Can you be mad at God for letting this happen to your baby, or does that count against you and make matters worse... Is it wrong to hope that God meets his quota for "things" before the amnio results come back or before Brinley's surgery? Is it totally wrong to even have things like His quota cross your mind or is that normal? Does He understand or does it hurt His feelings... and do I care if it hurts His feelings considering what He allowed to happen to a poor, innocent baby? Am I horrible for feeling that way?!?! Is it counterproductive to pray to God but be mad at Him... or does He basically expect that and it's totally normal? And WHY?!?!?! And I know it's horrible, but why couldn't things like this only happen to those babies who have crack head mom's or aren't wanted or something... why does it have to happen to baby who is so wanted and who's parents tried to do everything they could for her? Why Brinley? Why couldn't some old person get a heart issue instead of giving it to a baby?

How is that my aunt was a raging alcoholic who smoked and drank and most likely did drugs throughtout her pregnancy had a healthy baby? How is it that a 14 year old girl can not only get pregnant, but can smoke and not take vitamins and put herself and the uborn baby in dangerous situations but still have a healthy baby? How can women get pregnant, not know, drink or smoke or do anything "normal" and still have a healthy baby without knowing they're even pregnant? How can someone who's not even supposed to be able to have children get pregnant twice without trying and have two healthy babies? How can a family have 19+ kids that are all healthy? How is it that that's all fair, but we wanted a baby, we take care of ourselves and did everything right but our baby is starting off her life with heart surgery in the very best case scenario?!?!?! How is that fair?!?!

UUUUGGGGGHHHHHH!!!!!!!

Really Not Good

There's, uh, no real easy way to get through this post... Let me just say that most people's worst nightmare is our best case scenario for Brinley right now.

We got to the Center for Maternal and Fetal Medicine at 7:30 for our appointment. We knew it was going to be a long visit and we knew there was only a slim chance for good news, especially given the team they made sure we were able to see "if needed". Still, we tried to keep our thoughts positive and our hopes up.

We went back for the sonogram and the tech was really nice... For one very brief, glorious moment we thought Brinley was just going to be small. The tech said that she didn't see the echogenic focus on the heart and at first glance it seems like Brinley is healthy to her. She even laughed a little as I counted Boo's toes when her little foot popped up on the screen so clear. And then the tech got very quiet... very, very quiet... All I could do was reach out for Chris' hand and try to look for anything on the screen. Then she asked if anyone had talked to us about some fancy big word - about having two ventricles/vessels/v-somethings in the umbilical cord. She wouldn't look at my face when she asked so we knew that was a bad sign... we said no and then asked what that could mean. Naturally, she told us that she wasn't a doctor but that it could be a marker for a lot of things or nothing. I stopped watching the screen and started watching her, which only led me to notice every little grimace that she made when she looked at Brinley's profile, zoomed in on her heart, and took a 3D image of her hand... Then she rushed out to get the doctor telling us, again, that these could all be a lot of things or nothing at all.

Dr. Spencer came in to find me in tears and Chris being the rock that he is, and instantly apologized. Not a good sign. He looked over the pictures the tech had taken, talked to her with the fancy doctor words, tried to subtly point to his chin when the profile picture came up, and then went back to scan me some more... Dr. Spencer told us that the umbilical cord should have 3 v-things and not 2, and that could be causing the problem with Brinley's heart and her size. It could just be that - an issue with the umbilical cord that caused a VSD leading to a small, but generally healthy baby. However, the umbilical cord, the VSD, the recessed chin, the smaller limbs... they could all be because of a genetic disorder like Down Syndrome or any of the T## things. Although totally a guess, when we asked, Dr. Spencer said he would estimate Brinley's chances at 30-50% for Down Syndrome or another disorder...

We met with the genetic councilor and talked more indepth about doing an amnio and about family history. The amnio would give us almost 100% accuracy of what, if any, chromosome disorder that Brinley has... it would also tell us if she didn't have any disorder and just had this VSD and cord problems. Her and Dr. Spencer talked to us about how a VSD is simply a hole in the heart, how it's very common and often heals itself, it can be so easily treated and (again) is actually pretty common. They also told us how a heart problem combined with even the "best" of the genetic disorders can make life/survival extremely difficult. Both of them told us that even the "best" and most "popular" of the genetic disorders could greatly impair Brinley's quality of life... and that we seriously need to consider our options because of that. With some of the more severe disorders, they would all but not even let us decide because of the risks for Brinley, much less for me.

I think it was some time during this talk that Chris started crying with me.

So we did the amnio despite that it's normally avoided this late in pregnancy. We should have some preliminary results back Tuesday or Wednesday, with the full detailed report about a week after that... They are going to try and rush the results for us, but early next week we'll have a phone consult/check-in with the genetic councilor and she'll let us know what, if any, results she has from the amnio. In the mean time, they told me to take it very easy - not just because of the amnio and the risks involved there, but because of Brinley's whole condition. They did say that depending on her heart defect, the chances of it being something genetic could decrease and that the heart could be the main source for everything else wrong.

Then we waited to meet with the Hopkins doctor to look at Brinley's heart... and we cried a lot... Who would have thought that at any point in our pregnancy, we'd be pulling for a heart defect for our unborn child?!?! Yet, there we sat praying for something more than a common VSD to decrease the chances of something even more major. There we sat, crying and holding each other, praying that something be wrong with Brinley's heart... Crying about the genetic disorders and what kind of life that'd be for our baby girl, for the big sister that would have to sacrafice virtually everything because of these problems with the baby, for our family... Praying and wishing more for a heart defect that can't heal itself because that's our best option. And we cried.

Finally the Pediatric Cardio doctor finished with his normal appointments and was able to see the people who were squeezed in because of their situation. I couldn't even guess at his name since everything started seeming like such a blur of poking, prodding, pushing, twisting, turning and "shop talk" while they scanned Brinley's heart to see what's wrong with it. He was so nice though, and definitely portrayed a confidence that made me feel like he knew everything without a shadow of a doubt. If anyone could find my baby's heart defect and tell us how to fix it, this was the guy right here...

After an eternity, Dr. Hopkins went to "grab a little paperwork" real fast and then gave us our best case scenario... Brinley's heart defect is a-typical of almost all the genetic disorders, it is fixable, and as far as heart surgeries on a newborn go this one is pretty "easy". He let us know that because of the equipment here, he wasn't able to get the exact read that he'd like but when we come to Hopkins they'll be able to tell exactly and also exactly what it will entail to fix it. Oh - and he told us that we will be delivering at Johns Hopkins. There's basically no other hospital that is capable of performing the surgery that Brinley will need immediately...

So, we have two possibilities for Brinley's heart defect. Truncus Arteriosus or Double Outlet RV with Small Pulmonary Valve. (I'll have Chris scan the picture in later so this will make more sense but...) In a normal heart, you have the four chambers, the aorta and the pulmonary artery. There are two chambers on the right side of the heart, where the pulmonary artery pulls from and two on the left side where the aorta pulls from. Normally, the blood from your body (blue blood) comes in to the right side and then goes out through the pulmonary artery to the lungs; the blood from your lungs (red blood) come in on the left side and then goes out to your body through the aorta. The "good news" is that Brinley has all the pieces, the chambers look good and are doing their jobs. She has the big, main pieces of the engine as Chris put it. She does not however have the pice that separates the right and left sides. She also has the aorta and the pulmonary artery, but they aren't really in the right places basically... Without the little wall between the sides, the aorta is pulling blood from both sides and taking it to Brinley's body. But it's not all the right blood and oxygen so her limbs aren't getting what they need and are therefore small... Her pulmonary artery isn't getting the right blood either, so her lungs aren't getting the oxygen they need and she can't survive without me providing her oxygen.

The two possible diagonsis-es (diagonsi? diagnosies? IDK) are that either Brinley's pulomanary artery connects to the aorta - truncus arterious - or that it's attached to the side and very small - double outlet rv with small pulmonary valve. Either way, her limbs and lungs aren't getting what they need. The doctor said not only do both of these conditions not typically coinside with the genetic disorders, but that it is "an easy fix as far as heart surgeries go". Chris dumbed it down even more and said that this is like fixing a spark plug in an engine - it's easy to get too and doesn't involve opening the whole engine. The doctor says that (pending no genetic disorders) with the surgery Brinley will be able to be a normal kid, will keep up with her big sister and play sports, and will be able to play with her grandchildern. Of course she'll have regular check ups on her heart for the rest of her life, but a simple doctor's visit for life is almost to good to be true at this point.

We aren't totally clear yet though... It's not impossible for a genetic disorder to have any heart defect, even if it is a-typical. The Hopkins doctor and Dr. Spencer both made it very clear to us that, although it reduces the chances of a genetic disorder, this level of heart defect makes even the most "livable" genetic disorder extremely dangerous and in some cases they won't even perform the operation because the baby is... Well, you get it...

Yeah, so now we wait for the amnio results. We get everything moved to the Johns Hopkins' OB department and start seeing them as soon as possible instead of our normal OB. We will still need to go to our normal appointment on Monday for our 28 week check up and my glucose/blood test. We also need to go back to the high risk specialist in Annapolis in about 3 weeks for a scan to check on Brinley, but Dr. Spencer said Hopkins may already plan on doing this so we'd be able to cancel the appointment with them. We also have to get a Fetal Echo at Hopkins in 3-4 weeks no matter what the situation is with transferring OBs at that point. We will need to meet with at least one of the surgeons to go over the procedure for Brinley's heart surgey and plan on not being able to bring her home for a few weeks.

Again, this is all with our best case scenario... They've pretty much made it clear that if the amnio results are positive for any of the genetic disorders, we basically won't be able to... um, Brinley can't... there's just no way to have...

We're just trying to focus on the best case... and to make it more than 5 minutes without crying...

I'm sure you all know that we don't really ever ask for anything, but now we really need your prayers. Please, please, please add Brinley to your prayers. Please pray that she only has a heart defect and not any of the genetic disorders. Please pray that we get to have our baby girl. Please pray for our baby girl! We really appreciate even the smallest of positive thoughts sent Brinley's way... it's the only thing we can do.

Little Joys

It's hard not thinking about all the possibilities that could come from our visit with the high risk doctors, but having a 19 month old kind of forces you to keep going like "normal"... Right now, Emersyn is the one reason that I'm not completely freaking out at all the possiblities. Well, that and who knows where to start since there really are so many different things that could be causing Brinley's size. Still, it's things like this that keep you going and keep you at least on the positive side of life, even if it's only by one or two percent past the halfway mark...

On the Brinley side of updates... We basically had an appointment created for us where we're going to be squeezed in first thing tomorrow with the high risk doctors. We're "lucky" (and I use that term loosely considering the whole situation) that the Center for Maternal and Fetal Medicine will not only have all three of their top notch high risk pregnancy specialist doctors there tomorrow, but they'll also have all their best ultrasound techs, the genetic councilor and a Pediatric Cardio Specialist from Johns Hopkins there. All of them are ready and waiting to look at Brinley... Part of me is relived to have the best there, but most of me is scared shitless that they specifically insisted on us coming in first thing because of all the best being there. I mean, how easy is it to stay positive when you're scheduled to go see such specific specialists?!?! They're the best and I can totally appreciate that - I really am grateful to be able to see them - but couldn't I just not need to see any of them???? That would be so much easier... Just keep Brinley in your prayers. With this kind of line up to look at her, it seems our baby girl is going to need it more than we feared.