*Le Sigh*

So, since we've last come together, a few small things have happened.
We found out the name of the cardiologist who will be seeing us on April 4th for another u/s, formal diagnosis, and plan of action. Turns out, this guy is like, THE BEST there is and really knows his stuff. Not to mention, he's also the cardiologist that Adam's uncle sees once a year for his annuals. That is GOOD news! He also has a team of surgeons that he uses from the U of M that I can only assume are top notch also. Adam and I are really excited to get to meet this guy, find out who he turns us to, and see what the plan is. There is so much up in the air, it would be REALLY nice to get something more solid or at least in writing.
Besides that, we have gotten a HUGE outpouring of support. I can't even begin to tell you what this means to me. We have people I have never met praying for our family. We have people in the family and even just friends stepping out of the woodwork and offering all sorts of things. Babysitting, sitting with us while we are in the Cities for surgery/delivery, a place to crash, you name it. OMG I'm SO touched with how many people are even just offering words of comfort. You really don't know how this effects me. I'm tearing up right now just thinking about all the kind souls out there. I knew I had a huge family of people we could lean on, but its been amazing what we have gotten.
I've even extended to my mom the desire for her to be out here for the birth/surgery if at all possible, since we know pretty much when the baby will be born. For anyone who missed it, I am not allowed to go into labor on my own this time, we have to schedule it and hopefully I will avoid a C section! We believe we are aiming for between 37 and 39 weeks. My mom has told me that my step dad REALLY wants to come up here sometime during the summer, but they hadn't talked about dates. Giving them an idea of when we would REALLY like them to be here and about how long, they now have something that they can look forward to and hopefully plan on. Pray that all goes well with this idea and that their travel (they want to drive) goes smoothly.
Adam and I have since stopped the spontaneous bursting into tears. I think we really stopped getting misty eyed about it daily after the 3rd day (the day we announced it formally, I believe). While its touching that people still worry and tend to burst into tears from time to time, we believe that the time for tears is past (or just ahead, who knows), and its time to start putting plans into place. After all, tears can only do so much and they rarely help the situation.
We have done more research and believe we know about what level the baby's heart defect is, what can be done, and what to expect post op. We just have to get this all straight with the drs before we get our hearts set one way or another. BUT! Our research has given us A LOT of hope. Most children with this defect (Downs or not) go on to live happy, healthy, long lives. Some do need surgery later on also for various problems, but its rarely something serious. Also, we have learned that the time line for needing surgery is anywhere from birth to about 18 months, depending on what needs to be done and the degree of surgery they do. All in all, our situation could be MUCH worse and we are thankful that it seems to be a lesser deal. No, I'm not down playing the seriousness, but I'm trying to be thankful that instead of the baby's heart having NO endocardial cushion, there is something there, its not as serious as it could be, and there is something to build off of, rather than having to start from scratch. Its still a big deal, but its getting to be more understandable.
Baby is moving around SO much lately, and you can kinda feel it on the outside. Adam gets a giddy look on his face when he feels it and is always telling the baby "We love you! Keep growing and show us just how strong you are." Its super touching. Anthony even gets in on the loving baby action by kissing my belly. We even have some photos on facebook of Anthony asleep, cuddling my belly. He's been such a good kid lately.
Last, but most certainly not least, there's my lil man, Anthony. What a spit fire that kid is! We have been super lucky to get some really nice weather up here (mid 50s today!) and he's been able to get out more, play outside the house, and go places. He's enjoying it SO much, he comes home just EXHAUSTED. Adam even has me bringing Anthony with me when I go into work rather than him coming home. Adam likes showing off his kid a bit and we both find it HILARIOUS when Anthony starts pushing one of the smaller grey carts around the store. He crashes into things all the time, of course, but its so funny to see this little 2 1/2 foot ball of energy pushing this big cart around the store. He loves it, and he likes it even more when no one tries to help him. He's also walking SO well in shoes with a more stiff sole. This is good because it should help with his balance and all. He just loves getting out and we love that it helps him sleep like a rock at night. 3 nights and counting of sleeping through the night. I don't know if I dare count tonight since the people upstairs are being loud and waking him, but I'll take it when I don't have to keep going in there to get him back down.
No progress on the potty training yet. I haven't really tried either, though. I have time and I still have to finish the book, but Anthony loves sitting on his potty and watching tv or reading a book. I think its a good thing that he's so comfortable with it, we shouldn't have much issue. Now, finding over night diapers in his size? That's a battle I can't seem to win. NO WHERE in town sells any size smaller than a 4. My kid has been in a size 3 diaper since about 7 or 8 months. A size 4 would be HUGE on him since he has no butt for it to hold on to! Oh well, that battle, we'll fight another day. Thanks Diapers.com!
He's also talking more and more. We think he's starting "Bye Bye" (Buh Buh) and he even waves. But when he waves, he's waving his fingers on his lips. But he does it when he's trying to wave byebye, so it works for us. He does say a few other things, but I haven't been able to catch him saying it enough or been able to decipher it. This kid is seriously always on the run, so its hard to sit him down and see what he wants to say. He's also caused some SERIOUS owies to himself lately. He ran into a wall corner (he usually carries his ball when he runs into this corner and goes FLYING back when he collides, but this time, no ball, all skull) and about split his head open. His forehead is a lovely shade of green and brown right now from the healing bruise. He's also given himself ANOTHER bloody nose, this time we think he was running in the entry way and tripped on a shoe (his favorite toy, I swear) and hit both his upper and lower lip and nostril all on the left side. His lower lip got it the worst though and this bloody mark has since peeled off. Then he went rolling off the couch more than a few times one day (I swear, he's going to be a stunt man) and caused a mark next to his eye. For a few days, he looked like he belonged to the "Baby Fight Club". I promise, we don't beat him up. He's just that wound up always that he's always tripping, falling, and doing something that results in a boo boo. Thank God he doesn't whine and cry over every little thing.
I've also started reading "Happiest Toddler on the Block" We LOVED "Happiest Baby on the Block", so we thought we would see what the toddler book would offer. I haven't gotten very far, but I can already identify what kind of kid we have. We have the overly sensitive but easily over stimulated kind that you have to treat with kitten gloves to avoid total meltdowns, even when you are giving him what he wants. Take tonight for example. Anthony decided he was done with dinner so he took a bunch of food in each hand and threw it up in the air. Most landed back on his tray, but a few pieces went flying onto the floor. Adam and I both said "Anthony, NO!" and Adam told him "Naughty!" and shook his finger at the lil man. O.M.G. Anthony pulled the MOST heartbreaking look out of his bag of tricks. He started breathing heavily, the lower lip quivered hard core, and his eyes started to tear up. Adam and I looked at each other and about started crying ourselves. We knew he was tired and ready for bed, so we decided to avoid the tantrum at all costs and consoled the lil dude. This kid knows just what kind of things he can do to get your heart strings, I swear. But, we did avoid the melt down and he went to bed somewhat easily. Just a good example of how some kids you can scold with no reaction while others just take that tone of voice or something like it and they lose it. But "Happiest Toddler" promises to be a good read. If you have a kid between the ages of 9 months and 4 years, this book is supposed to be for us. I'll keep you posted on how it helps us out with tantrums, naughty behavior, and keeping this lil man from getting too wild.
I can't really think of anything else right now, so I'll end here. I'll update when I hear more, more happens, or if I get really bored.
Oh, before I log off, I just want to address something. I won't be posting photos of the kids on here AT ALL. Until I can make absolute sure that no freakish perv gets a hold of them, I won't be putting up photos on blogger. Facebook, yes, but not here. If you want to see photos, either head over to facebook or let me know and I'll see if I can email a few. Just a step I'm taking to keep the kids safe. I've heard of too many other moms having their photos pirated for over seas ads or being used in some sick way. Please respect this choice.
Hope all is well in your home!

Dear God, we need a miracle

Ok, so a lot has happened since I last put anything on here. Anthony is growing like a weed. He's almost entirely out of anything under 12 months (including some 12 month stuff!) and is a walking, talking, almost running tyrant! This kid GOES all day from about 8 am to about 9pm with only a 45 minute nap in the morning. He'll nap once in a while in the afternoon, but its getting pretty rare. He loves learning and exploring so much. He's learned how to climb things so he's all over the couch, the barricade, our bed, chairs, ANYTHING he feels is in his way and keeping him from exploring something around him. He's gotten a fair amount of bumps, bruises, and close calls. He even got his first bloody nose yesterday (wed, March 9) because he was playing with Grandma Tammie's tv and wound up somehow smashing his face into the entertainment center around it. We thought it was just a simple bump on the mouth until he came over bawling his eyes out holding his mouth. The blood came out of his nose about 30 seconds later. He wasn't too keen on anyone wiping it away and he certainly didn't like me putting aquaphor in his nostril to keep it moist and keep his finger out of there. Poor kid had a rough day yesterday!
His last check up was about 2 weeks ago and he's grown again! He was about 20 lbs, 12 oz and about 30 inches tall. My little man has sprouted up! He didn't like the RN/resident dr that came in to shadow our usual pediatrician. He didn't like her poking and prodding, but I think she was also SUPER nervous about being on her own in the room. Maybe we were one of the first ones she had done solo. Afterward, our usual pedi came in and talked to us and told us outright she wasn't concerned about his super slow weight gain because we see so many heavier babies anymore that it throws everyone off on what a baby "should" look like. I was so happy to hear those words for myself this time. Lets me know that she's paying attention to it, but she feels he's right on track with where he should be for his size.
He's saying more and more words and they are starting to sound more and more like words you or I would use. I think tonight he was saying "bah" (ball?) while he was in his bath, holding an orange ball. He's getting really good about understanding when you tell him "No!" and "Don't touch". We have issues with anything like "Come here" though. He's such a bull headed kid! But the vocabulary is coming along, slowly, but surely. I think he's perfecting words before he adds more. He even goes running to the door when I ask him "Who is at the door? Is Papa home? Go get that Dada!" He LOVES running and greeting Adam at the door. I'm sure Adam loves it too! I'll even hold off on changing a diaper if I hear the car pull up. Anthony does NOT like being contained when his Dada comes home. He will do ANYTHING to get down that hall and to that door before Adam has his shoes off.
We have tried a little of potty learning. Yea, I said potty learning. I've decided to change how I say it because the thought of training him to use the potty makes me feel more like an animal handler rather than his momma and teacher. But Anthony will sit on his potty chair for up to 5 minutes while watching tv (during diaper changes). He got such a big thrill out of the first time I put him on the potty and cheered because he sat there for about 10 seconds. After that, he wanted to show off that he could sit on there even longer. He showed Adam too when he got home. Adam was so proud! He handed Anthony a ball and Anthony shoved it between his legs into the pan that is supposed to collect everything. Oh well, at least he knows SOMETHING goes in there, we'll work on it not being toys and being more pee and poo later. Other than that, he seems to like hearing us tell him that his butt is wet when we change him and that he's dry when we are done. Could turn out to be an amazing thing to get him trained early!
Sadly, not everything I can report on is happy. Wednesday (again, March 9), we went to a dr's appointment down in St Cloud for a level 2 ultrasound. If you read any past entries on the other blog, you'd have read about why we needed this done. But for the rest who may read this, I'll back track a little.
Feb 9, we had a routine OB check up for me (and the new baby) and were offered the chance to get a blood screening done that would screen for risk factors for Spina Bifida, Neural Tube Defects, Down's syndrome, and other chromosomal abnormalities. We couldn't remember if we had for Anthony so we decided what the hay, why not? Well, we came back abnormal with elevated risk of Down's Syndrome. With this comes genetic counseling and a level 2 ultrasound in which they measure baby head to toe and try to pin point anything that may be wrong. Now, Before we went in for the counseling and the u/s, I was kicking myself HARD CORE for having agreed to this test and told other ladies that getting that test done is the stupidest thing you can do unless you have a risk factor in your family. Well, I got to eat my words at the appointment and they did NOT taste good or go down smoothly. We went through the counseling and the lady found no reason to be alarmed, but she shared the numbers that caused the test to come back the way it did.
Now, with this screening, there is a VERY high false positive rate (anywhere from 5% to about 80% false positives), but there are times when its DEAD ON. With each of the problems it screens for, there are certain markers that tell us what we are at risk for. Your numbers should be as close to 1 as possible on all 4 of the hormones they test. Ours were under 1 for 2 of them (about .84 and .60 I believe which was fine), but the other two hormones were HIGH. Our Estridol (I believe it was) was about 1.7 and our HcG was 2.84. VERY high. But, that doesn't mean for sure either way, it just means that our risk is higher than other women my age.
We went into the u/s feeling somewhat confident that we were in the clear, but slightly hesitant because that HcG number was really high. We knew that the u/s was going to take about an hour, so we knew we would get to find out a LOT of information. As the tech was measuring, we kept noticing that body parts were measuring about a week ahead. Not a bad thing at all since Down's syndrome kids have certain body parts that measure small. She checked leg bones, arm bones, baby's pinkies, it's nasal cavity, you name it and they all measured perfectly on track or ahead. I had made sure to drink a LOT of oj before this appointment so we wouldn't get a lazy bones, so the tech had her work cut out for her to get the more detailed measurements she needed. She got some AWESOME profile shots and even a few of cute little feet (actually, BIG feet!), hands, and full body shots. When it came to checking baby's heart, this is where she was having the most problems. Baby wouldn't stop wiggling and turning on her! We tried getting me up and going to the bathroom to make more room and see if that calmed down the little wild child. That barely worked, but it was enough. She found the part of the heart she needed to and this is where it all went bad. She noticed that something didn't look right. It looked like something was missing and there was a hole where they obviously shouldn't be. She checked a few more times, sent the photos she got to the dr, and then went to go talk to him. We knew something was wrong, but we were hoping that it wasn't serious.
About 10 minutes later, a gentleman about my dad's age (maybe a little older) walked in and started double checking baby's heart. Sure enough, he saw the same thing she did and began to tell us what it meant. Basically, if you cut a heart in half top to bottom so that you have a front half and a back half, you would see a cross like formation in the middle with the two arms on the side slightly offset. With our baby, it looked more like a capital T with the arms on the sides at the same height. He mentioned that the part at the top was missing and this wasn't a good thing. Basically, it meant that the baby is going to need open heart surgery to fashion some sort of structure there to keep the blood on the left away from the blood on the right (Blood to the lungs on one side and blood to the body on the other). This is NOT something that will heal on its own. The hole is less of a concern because there are 3 possibilities with that. The hole could grow with the baby's heart, could stay the same size and not grow, or it could close up on its own. Both problems being something we would need to keep an eye on to make sure things don't get worse. The baby's heart right now is about the size of a dime to the size of a nickle. The hole is about the size of the president's nose on either one of those coins. Its much less of a concern for now, but the missing part in the heart, that's big.
Well, that's not all either. Both the tech and the dr found fluid around baby's lungs. Now, if we didn't have a heart defect also, it would have been passed off as normal and nothing to worry about. But since we do have a heart defect (and this defect is pretty much a clear sign of Down's Syndrome), it causes concern. Kids with Down's have this fluid around their lungs and it can cause various issues. This is the point in which I started to lose all my nerve and the tears started flowing. And this is also where I learned that this dr wasn't the typical run of the mill dr who comes in, tells you what's wrong and runs back out the door. He stopped, tried to console me by rubbing my arm, and asking if I was ok to continue. Of course I said yes because I wanted to get all the bad news as fast as I could so I could start to process it.
I have done a little research so far and have come up with some AWESOME sites that explain the problem so much better than I ever could. The condition that the baby has is called A V Canal Defect (or endocardial cushion defect). Some good sites to read up more are: http://www.uofmchildrenshospital.org/healthlibrary/Article/89102 and http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0004577/
I am open for questions if anyone has any and I'll do my best to answer what I can. In the mean time, all we ask for right now is TONS of prayer for a miracle. We know that this part of baby's heart won't grow and needs surgery, but prayer and faith never hurt. We ask that you keep us in your thoughts as we go down this journey and test our own personal strengths. I know my blogging posts get long. So if you don't like it, there is a little X in that upper right hand corner. I urge you to click it. Other wise, Thanks for hanging in there and reading this crazy mom's worries!