D-I-S-N-E-Y-L-A-N-D

Where to begin! Andrew was granted a wish from Make-A-Wish, not because something is wrong, but because his heart condition qualifies as a life-threatening condition. So, he wanted to go to Disneyland and see Papa and Mema. Our trip was 6 days total, fast but full of fun!

On Friday, the limo picked us up to drive us to the airport. What a treat! The kids were all giggles and smiles. They enjoyed the light show on the ceiling in the car. The plane rides were also fun. It was very late Friday night, when we arrived in Santa Ana. There we rented a minivan(2011 Toyota Sienna-what a treat for me, it is my dream car!!). We drove to Paradise Pier, a Disneyland Hotel. What a nice place! When we walked into the room, we saw they had left balloons for Andrew along with an autographed 8X10 of Mickey Mouse. The beds were filled with CANDY! Disney character chocolate coins. And, don't forget about the Mickey Mouse shaped Rice Krispy treats dipped halfway in chocolate next to chocolate covered strawberries! We looked out our window to see if we had a good view, and boy were we pleasantly surprised. Our 11th story room overlooked California Adventure, more specifically-the World of Color show and the park all full of lights, including the Mickey Ferris Wheel. It was gorgeous!

Our first day, we ate a quick breakfast and headed straight for Disneyland. Just after we got in early, because we were hotel guests, they had to close down the entrance and exit due to a suspicious package. We did not know about it for a while, but we did notice for about 2 1/2 -3 hours, there were no lines for anything! How nice. We rode so many rides. Then around 12:30, we had a private "Meet & Greet" with Mickey Mouse (and Minnie came a bit later, too) in the "Wish Lounge". The kids got plenty of hugs and autographs. They all got to color with them and play hide and seek. Of course, many pictures, too! Then off to more rides and meeting characters in the park. The weather was warm, but very nice. That evening, we met up with some college friends of ours, their kids and ours played very well and we all went to eat at Rainforest Cafe, in Downtown Disney. Fun memories! Then, back to Disneyland for more fun. Later that night, we made our way back to the room and watched World of Color.

The second day was another filled with busy fun. We first had reservations at Goofy's Kitchen. There we met more characters who came to our table and visited for a minute or so, allowing us to fill up our autograph book a little more. It was a lot of fun, not to mention-the buffet was great also. They had a very large selection of hot breakfast items, along with fun foods like Mickey Mouse shaped waffles, pancakes, etc; peanut butter and jelly PIZZA, mac n cheese pizza, tons of fruit, pudding with gummy worms, hot dogs, muffins, and so much more. After our meal, we went to Disneyland California Adventure. What a neat place. More characters, rides, souvenir shops. We got to go to Disney Jr. Live On Stage. That was a highlight for younger kids. We saw the Little Einsteins, Mickey Mouse Clubhouse, Jake and the Neverland Pirates, Handy Manny, and I don't remember what else. It was a very neat show, party favors fell from the ceiling at one point and bubbles at another. After more rides and lunch, I took the younger girls to the room, they needed some run around time and rest. The older three kids and Don got to really hit all the big kid rides, including Hollywood Tower of Terror, YES all 3 older ones went on this one, along with Soaring Over California, and many more! They had a blast and were able to do much more without the youngest two. Later that evening Papa and Mema drove up to spend time with us. The kids would not leave them alone! But it was nice to have them there for a couple days. Back at the hotel, we got to see World of Color and some fireworks over Disneyland. Our T.V. had a couple channels with the music that went along with the firework show and World of Color.

The third day was Knottsberry Farm day! I really loved that place. I enjoyed the slower pace, less people and more kiddie rides that we did not have to accompany them on. We stayed there until closing. Papa and Mema went with us. We got a private "Meet & Greet" with Snoopy and Snoopy gave Andrew a stuffed Snoopy, which he loves! We also got to see a Peanuts Characters show, very cute. Of course we ate at Mrs. Knotts restaurant, GREAT experience. At Knottsberry Farm we got to see a cowboy show, it was hilarious! I have to say that the log ride was my favorite there and we rode it quite a few times. On the way back to the hotel, we drove to one of Don's favorite places to eat, In-And-Out Burger. It was very crowded but yummy fun!

Tuesday morning we drove down to Santa Maria to see Don's family. We had not seen them in 5 years. Got to visit with Grandpa and Grandma Trieber-miss them so much! Of course, we spent most of the day at Papa's and Mema's with 10 of their 21 cousins, you would have never known we had that many children there, they were all so well behaved and polite! Aunt Cassie enjoyed her niece time(she is the brave Supermom to 8 boys!) and the enjoyed playing around with Uncle Steve and Uncle John. One fun thing there, Don dared his twin(who normally has a shaved head) to shave his goatee and in return Don would shave his head. They looked so much alike from the back, it was funny. The bar-b-cue was delicious, along with all the other yummy things we got to eat. We went to see 4 more cousins on the way back to the hotel, late night but fun!

Our last day we had to make a few important stops: Boston Market and See's Candy. We were NOT disappointed one bit! Then off course, off to drop off the rental and then to the airport, sniff...sniff...I prayed not to have a bad attidude upon giving up that 8 seater, beauty. It went ok, I guess. We got to the airport way too early, but it beats rushing around. Our limo was waiting for us with our family name on a sign at baggage claim here at the N.O. airport. We got home after 1 a.m. and the kids were wired telling Grandma all about it. I think we went to bed at 3:30 and the kids all slept in til after 1030.

This trip was so much fun, so glad we got to do this. Glad, too that Andrew wished for it!

A Little Catch-Up

Not too much to blog about, that can be a good thing for us! I enjoy the "calm" and "drama-free" life, most of the time! The kids are all doing well. They are all looking forward to our California trip in 2 weeks. Flying by airplane will be a first for Andrew, Maci and Averie. Disneyland will be a first for everyone except for Don. That will be something I cannot wait to put on the blog when we get back!!! Andrew will be going back for a follow-up for Cardiology shortly after our trip, really dreading this one, fearing he may want to discuss surgery or cath. BUT, we did get a 2nd opinion recently at Andrew's original cardiologist and he thinks Andrew will be ok to not have surgery or any intervention for a while. If it seems serious with the present doctor, we will get a 3rd opinion, most likely at Children's in Little Rock, where he had his last surgery. Otherwise, everyone has been super healthy and just plugging along in their school work, getting good grades! I plan to start Andrew and Maci in a K program at home this fall. They get along the least, maybe being in K together will help them with this. We shall see! :-)

***I almost forgot, I put a link towards the bottom, it is a video I made that somewhat explains briefly our journey, so far, with CHD and SVT, the 3 kids' heart conditions.***

My Redeemer Is Faithful And True

Well, it has been a while, once again. I only blog when I have something worth blogging about, not just ramblings, well at least that is my goal. Not too much to catch up on. We started school (homeschool) a few weeks ago, using BJU Press for the first time. I am more than impressed with their curriculum, lesson plans and videos. The kids also enjoy it. Of course they would rather be playing outside, but they also love their school work.

The main reason for this post is Andrew and Averie's cardiology appointments yesterday. I had asked that everyone pray for the echo results to be the same as last time or at least not much change. Well, our prayers were answered once again! Last visit for Averie the doctor said not to be alarmed that we may be talking about scheduling her next surgery when we came back. Well, Averie looked great and does not have to go back for 9 months, which is a long time, for heart kids.(AND he never brought up surgery for her!!) Andrew has some calcification in his conduit. He said they may have to do a balloon cath within the year, but maybe not. He goes back in 6 months to check on it. He had this done at 1 year and it gave him an extra year on that conduit(that he had since 3 weeks old) before it got replaced. His aortic valve has always been leaky, and it remains mild to moderate(more on the milder side), Praise the Lord!

This cardiologist's face just lights up at the sight of Averie! I love to see it! This is what Dr. Christian Lilje said to me yesterday, "Do you remember the first time you came to meet with me and when we looked at the baby(at this time I was pregnant so it was a fetal echo, I had already been given the grim diagnosis from Andrew's original cardiologist)? Do you remember that I told you her prognosis was so poor, ZERO life expectancy? LOOK AT HER! She is amazing!!" I love that he is not too proud to admit that she is a miracle, that even he could not understand how everytime I came back, something mysteriously changed with her heart and that she grew lungs and shouldn't have been able to. Her heart had grown so distorted that her pulmonary arteries usually, in those cases where the pulmonary valve was absent along with Tetralogy of Fallot, they usually take over the lung space and the baby usually goes into heart failure during the pregnancy and if they make it to birth, it usually isn't good either because they have no lungs, so a ventilator doesn't help. I was a wreck! But God worked it all out, and I love to be reminded, not that we ever forget. I guess I just love to hear the doctor say it, too! I remember how he was smiling from ear to ear when I had done a fetal MRI at 37 weeks and we saw almost perfect lungs in Averie's little body!

Well, thanks for your many prayers for our family, we will always need them, especially around surgery times. Thanks for letting me brag on God again, it NEVER gets old!

From A Household of 7 in 2011

Things haven't changed much in the last 4 months, the last time I blogged. Well, putting it that way, I guess they have! Averie is walking, well running now. She talks and talks, hmmmm....like her mother! For a few months now, if you ask her ANY question, even "Are you married, or when are you going to college, or what is your name?" She ALWAYS answers, even if it is baby talk. It is as if she knows you are asking her a question. Averie and Maci share the same love of music and animals, especially dogs! These two are going to be very close, I hope.

Maci is still my most sensitive child. She gets her feeling hurt very easily and holds grudges like her grandma! (my mom!) She is still very shy at church, hiding behind me wherever I go. But she is a good girl, we don't ever have much trouble from her. And, she does not usually cause the trouble, she is not an instigator, we have enough of those, don't we Averie!

Andrew turns 4 in a about a week. Wow, what a story he is! Most certainly our most energetic child, pushes all of the limits, especially when it comes to talking back to his mother! I am reaping in this area, I was so bad at it myself. He is a very sharp thinker, always having some witty comment ready to fire! What a joy he has been to our family, just cannot figure out a way to put a silencer on his extremely LOUD burps, very embarrassing, but he acts like they are involuntary. Hmmm...

Aubrey is such a delightful little girl, I wasn't sure I would ever be able to say this! She gave us such big fits from the day she was born until about 18 months ago. But, she is so sweet and helpful. She and I will be best friends forever! She is doing such a great job in kindergarten, what an exremely good reader and also great at math. I couldn't be more proud.

Matthew is also doing well in school. Neither one of them have complained about having to do their work. (I am sure it is coming!!) He is also very good at math, has decent handwriting for a boy and enjoys reading as much as he has to. Actually, depends on the book, if it is something that interests him, he will not put it down! He is so creative, and loves to take things apart to put them back together, which is what his daddy did as a child. Guess that is why he is so handy now!

Don and I will soon be celebrating our 8th Wedding Anniversary. Wow, I had no idea marriage would be this awesome and I could ever love someone this much! He is the most generous and kind man I know. The kids could not ask for a better, more energetic and patient Daddy! I am so blessed! It was not an easy 8 years, starting with miscarriage of our first baby, then the 4 surgeries, so far, of our children, but he has been such a strong leader and example of trusting the Lord for me. I thank God daily, and more, for a wonderful, Godly husband.

Me...well, let's just say I am really enjoying not having any more babies! It was addicting, I won't lie, but, it has been great to have my energy back and to do so much more with the older ones, without having a fussy, nursing infant along. They have been patient dealing with it all, now it is time to just go have fun, big kid fun...camping, fishing, Disney(in a couple years), hiking, etc. Homeschooling is going great and we are not adding anyone this fall as Andrew is just turning 4, but will most likely add Andrew and Maci the following year together for kindergarten, FUN!!

As far as the kids' heart health: Andrew should be ok to wait several more years before his next surgery, providing his aortic valve and conduit go bad around the same time. He has shown no symptoms of heart failure. Averie should be ok for another year, hopefully a few years. She was not placed with a pulmonary valve, so as long as she tolerates this and her heart doesn't start doing anything funky, we should be ok to wait. It is being discussed soon between the cardiologist and surgeon.

Thanks for reading, especially those not on Facebook who still like to keep up with our family. Hope all is well with you all, also!

Beginnings And Endings In 2010

Where to start...oh, the beginning! 2010 began with a brand new baby, Averie Grace Mauck, born January 6! What a miracle she is, from the start. As you may remember, she was diagnosed inutero with a very serious heart condition and most doctors did not expect her to survive to birth. We had so many praying for us, and she was born and got to come home for almost 6 months before her heart surgery. Our pastor and his wife were at the hospital for her birth, it made the wait so much easier, what a special blessing it was to have them there to cry and rejoice with. We did not know at that point that she would do so well, just that she was alive and she cried and did not need any help! She is doing great and is just about to walk, what a blessing she has been to our family. Her brothers and sisters just love her to pieces!



Another beginning for 2010 is that our church family at Grace Baptist got the awesome privilege of moving into our new building, built by our pastor and church members with the help of some builders sent to share their ministry. The building is beautiful and has been the place where many have received Christ and or gotten baptized, including our daughter, Aubrey Shae! She asked Jesus to save her this year at 4 years old and is already very concerned that others she knows does the same. If you have not had the opportunity to see this building, please come by. (5000 Leo Kerner/Lafitte Larose Hwy, Marrero, LA 70072-www.gracebaptistofmarrero.com)



One ending in 2010 was Matthew graduating kindergarten! He is such a joy to teach at home, and is reading well, adding, subtracting, learning money and much more. Very smart kiddo, his latest amazement with school is learning cursive, so proud of himself. He turned 6 in August. With that ending, another beginning, Aubrey started kindergarten! Aubrey will be 5 on November 29. She is so much fun to teach as well. She is about half way through and already the basic sounds for each letter. She thought after she got to "Z" that she did not have to go to school anymore! She does enjoy it and often asks if we can do more. (I know, that will change!)



Andrew turned 3 this year. What a sarcastic, charming, outgoing kid. He never stops and many times gives us a scare or two with his climbing and jumping. He is the official "middle child", as we are stopping at 5! I wasn't sure I would ever get to the point where I felt like we had enough and I did not want to have another baby, sounds silly to some, I am sure. Besides our unique circumstances of two serious heart conditions which will require future surgeries until they are adults, we are so content with five. I have never been so happy to get rid of items which Averie outgrows, be it bouncy seats, walkers, clothes, it just feels great! I am so excited about getting to do big kid things like camping, boating, fishing, etc. without being pregnant or nursing a baby! I know know what it is like to have a 10 month old without being pregnant again, I never got passed 7 months before. (Which is how the 5 kids, 5 and under happened!) I feel incredibly blessed to have been able to have 5, wow, but no more, Lord willing!



Maci is a very sassy and cute 2 year old now, potty-trained and all! She is a handful and often wants to be the baby, and we let her a lot. She gets away with a lot more than the others did at this age, just feel bad that the entire second half of my pregnancy(with Averie) when she (Maci)was still a baby, I was gone so much for appointments almost daily and worried the remainder of the time, I guess I am trying to make it up to her! All of my children have learned to be pretty well behaved, so I really cannot complain.



Don is still working at the same machine shop. His employers seem to like him a lot, he gets raises and they tend to give him busy work when they are slow just to keep him on the clock! (which only happened for a couple of months here and there) He got to go deer hunting for the first time this year, actually, is there right now, still waiting to hear about poor Bambi!



I do not take it for granted that God has given more grace this year, Averie recovered from 2 surgeries well, one for her ovary at one day old, and the other open heart at 6 months. She came home from each one in less than 2 weeks! And, our Andrew had a bad case of pneumonia, which he had to stay over a few nights at Children's for, but also recovered very fast! We just never know what each day will hold, as anyone else, take one day at a time.



All said, what a year, beginning to end! (of course, December could bring many surprises!)

One Long but Short Week!

One week ago today our youngest baby, Averie had her open heart surgery to repair her Tetralogy of Fallot. Her recovery has been AMAZING! We are already about to go home, maybe tomorrow. She came off of the ventilator and her chest tubes were pulled so soon and without complications! That really does mean alot with babies and heart surgeries, there is so much that can go wrong and did not. We are very thankful to all of our praying relatives and friends.

Many people are asking, (meaning friends and friends of friends) "Why did they have anymore children!, I mean wasn't it bad enough that Andrew had to go through this and now another! What were they thinking." First of all, this hurts, ALOT! Secondly, not that we owe anyone an explanation, but after we had Andrew we did go through all of the genetic testing and we were told we should be fine to have more children. When we found out about Averie, we have re-entered genetic testing and they are really digging deep, as this is unusual. Would I do it all over again...OF COURSE! So not that our family's expansion is ANYONE'S business, we are NOT having anymore. Now, I feel better! By the way, noone has a choice in the matter-God designed my children exactly like HE WANTS them! And they are special because of it. If I only had one child and it was a heart baby and I wanted another, I would still risk it. It is hard, but they are worth it and anyone around us can tell you we lead a very normal life, aside from surgery. I just think too many people talk about things they have NO KNOWLEDGE about, it is usually UNEDUCATED opinion, which is worthless to anyone! My husband and I wanted 6 and maybe one day will even get to adopt, hey here you go-maybe we will adopt one of these heart babies who get abandoned because their parents did not think they were perfect! Thankfully, none of my children have terminal issues-it is all fixable-PRAISE GOD! Now, I feel soooo much better.

Our other kiddos cannot wait for their baby sister to come home. Our family is so close, we never take a day for granted. My mom has held down the fort pretty well, but is most likely exhausted! Can't wait to get home and help her!

Once again, thanks for praying! We love you all!

Averie's First Open Heart Surgery

Sorry I haven't posted much, been putting everything on Facebook. Just incase you are not on facebook, Averie will be having surgery on July 1. It should last 5-6 hours and should involve a complete repair. She will need valve replacements as she outgrows her pulmonary valve they are putting in. She is doing great, the doctors just think it is a good time.

Has It Really Been 2 MONTHS????

Wow. Hard to believe it has been two months since the birth of our little miracle. She is precious just as the other four! We have had so fun with her. She seems to be doing okay with her heart problems, so far. She is tolerating everything so the cardiologist is still okay with watching her and waiting for surgery for 6- 12 months of age. Seems too good to be true still. We will never get over God's goodness to us! She is growing fast and weighs 10.5 lbs! And, just like her sisters, she is quite the "Mommy's Girl."

Matthew has been doing awesome in K5 homeschool, even when I couldn't devote very much or any attention to him. He is reading, adding and subtracting, telling time and counting money. It is getting harder and harder to keep him in with this great weather. He is the best big brother and really puts up with alot!

Aubrey is maturing, finally! She loves to make believe, esp. babies. She is always so quick to respond to Averie's cries, running to search for a pacifier or just try to calm her by talking to her. I love the bond she has with her.

Andrew....he is the busiest, most sarcastic, extremely curious little guy. He really comes out with some crazy stuff. He will be three next month and has already made up his first joke: "Why did the moo cow go across the road?...He wanted to get to the water!" The joke really was nothing to laugh at, but hearing him tell it had everyone in the suburban cracking up!

Maci is such a sweet baby! She is 18months old now. She is SUCH a sensitive little girl. She does not like to see anyone upset. If she thinks she is in trouble, she keeps repeating, "I love you, mommy." She is trying to potty train herself, I am not ready for that.

Don is still working as a machinist and is learning so much at the company he works for. It is definately a "blue collar" kind of job. He comes home SO filthy! I am usre he is exhausted too, but he never acts like he is. He does not stop until he is ready for bed. What a great daddy my kids have! (And I could not ask for a better husband!)

I am still staying pretty busy with appointments and homeschooling. With three kids seeing a cardiologist, two going to genetics, 4 to the dentist, 5 here and there to the pediatrician, myself to my post partum checkups...that is enough .

Our church is in the new building now and it has been awesome. We have seen a steady flow of visitors each week. We have a great location. There have been salvations and baptisms each week. It is such a beautiful auditorium and building. I need to get pictures!

Once again, Thank you for your many prayers for our family!

Averie's Progress (As of Sunday)

Today is Sunday, Averie is 5 days old! What a miracle she is. Even the doctors admit that in their own way. She has kept perfect numbers, never even gave us a scare. She got to drink milk for the first time today and loved it. Her only complaint was that she has a 10-15 cc limit. I was told that she would be able to go home if she did well with eating. I think I have to room in with her for a couple of days first, to take over total care for her and get comfortable with it. She is on NO medicines, WOW. (Well, except for the antibiotics she is having b/c of her ovary surgery) She is a little yellow, hopefully the numbers go back down for this so it does not delay things. I am sure everyone knows this, but she does still need surgery for her heart, she just does not need it immediately like Andrew did. She will come home and go to the cardiologist frequently and they will be watching through ekg and echo to know when it is time. Some babies like her have gone to 9 months, we will see. What a blessing that is just is not now! We are still waiting on Pathology reports for her cyst they removed. And we are also expecting to hear soon about the DiGeorge Syndrome test. The genetics doctor met with Don and Averie, and he is almost sure she does not have this syndrome, they are running the tests to be sure.Doctors tell us more than daily that she is suprising everyone by doing so well. She came out SO blue, it really scared everyone. She pinked up very fast. Most doctors I knew basically did not give her a chance at all. Even the internet was not helpful in giving us hope. But, "Lean not unto thine own understanding..." That is what I alwasys quoted over and over on the way home from my appointments. There is no way to really say thank you to everyone who has prayed for this baby. I do hope you all continue as you just never know what each day will bring. Take care and live each day for God, put Him first and everything else will be taken care of!

Averie's 2nd Day

AngieDon Mauck January 7 at 9:57pm
She is stable and still out of it after surgery for removing the large cyst and removing the ovary it wrapped around. I misunderstood the ventt thing. She is on the vent still, they have weaned the pressure and there is no extra oxygen required. I am hoping to hear she is back to no vent tomorrow and acting like she was prior to surgery. They expect her to. We should be getting results back on the testing of the cyst tomorrow or Monday. Her colon is completely fine, no issues there! Thank you again for being there to hear our concerns and pray for her so much.

Averie's Birth

She did great, as I am sure you have heard. Once again, God has surprised the doctors, but not us! She is my biggest girl, 7 lbs even but short like the others, 18.5 inches long. Her hair, not much up there, but what we see is dark. That is how all mine start out. She screamed and screamed at her birth, something I prayed VERY hard to hear! I cried and cried and rejoiced!Her heart is doing great, she was under the oxygen hood for a couple hrs, but nothing since then. Her cardiologist is awesome and you could hear him smiling through the phone when he gave me her first update. We do not know much about the cyst or her enlarged colon. Cyst is still there, smaller at 4.4 cm. We will know more today, PLEASE PRAY FOR GOOD NEWS! You never know what is going on inside these little babies.Don has been up there the whole time with her except for overnight, at her hospital. He has done an excelent job on sending me pictures and video. He should get to hold her today. She cannot eat yet, and has been off and on fussy, but she seems fine. Big brothers and sisters are doing great with Grandma, of course, unaffected. Don's parents were proud to hear of this miraculous birth of their 22nd grandchild, and having a 6th granddaughter! The doctors now need wisdom more than ever as they get together and plan treatment for her. Will she need surgery right away or go home and grow first, if she keeps this up! What kind of cyst she has and so forth. I cannot tell you how much your prayers have meant to us and Averie's life and awesome start. I do not count any of it lightly! Thank you and there will hopefully be more awesome news to come today. I know there may be things we do not want to hear, but God always gives the right amount of GRACE!I just called to check on her at 215 and she has had NO changes!

Update on Averie

Where to start...Alot has happened since the last email. First to get the bad news out of the way...The baby now has a cyst on her ovary that is oval shaped(like usual) and it is 6cm at the longest and 4 cm. That is HUGE. We are praying this goes away and does not cause any breathing issues when she is born. She obviously does not need any more obstacles! Ok, soooooo much more good news! We had another echo done on Tuesday this week and the cardiologist was somewhat shocked. She is still very critical and serious, but alot of things got better and changed, somehow(we know how!!). Her pulmonary artery did not grow from the last scan. He actually said, "I cannot explain how this happened!" Also, her branches, which were once very off from each other in size are now the SAME size! He was happy about this. There is still NO FLUID around her heart, nor is she any longer in danger for this happening. He was very impressed at her aortic arch. Apparently most of the time with this heart condition, this gets smashed or something, he said "Hers is beautiful!" That all happened in one echo scan! Then, he has been asking me if I would consider a Fetal MRI. I said of course. He said it will not change anything, but just give him a better feel for her outcome. WELL.....That was done yesterday, and I was the first expectant mother to do this at Children's Hospital, it was neat. When I came out, the cardiologist and radiologist were looking at it all and the cardiologist was smiling from ear to ear! He showed me that this baby has GREAT LUNGS. I knew that their main concern all along is that she would never grow lungs since her pulmonary artery is so large, it takes up lung space and sometimes leaves no room for lungs to develop, which is why I was not given much hope all along. But, she has them and plenty developed and alot of lung space, still compromised, but very good. He said if she were born today, he believes she would be just fine! I cried so much! We had not heard anything like this all along. When he said how happy he was with the MRI and his findings, I told him that we have SO many people all over praying for this baby. He just said he was glad to hear it. So, thanks for praying for her and us, and please continue. I have 2 1/2 weeks left. I should deliver by c-section on Jan 6 at 630 am, with many specialist present. Her condition is SO uncommon, they do not see it alot. But they are ready(and so are we) I will keep you all updated on her cyst. Thank you again!

Echo on Oct 30

Today was a WONDERFUL day of nothing but GOOD NEWS! First my echo showed no changes...that is good. The artery did NOT get bigger! Then my meeting with the surgeon...WOW, where do I start. He said most of these babies go home after about a week of monitoring and putting in a shunt(not open heart yet) and allow them to grow before they come back for surgery about 6-8 months old. Ok, so you are saying she will most likely survive? Yes! (Only God really knows) But the other doc says the opposite. He never wanted us to be hopeful. But this is the surgeon for Children's Hospital New Orleans who has worked there for 40 years. He did Andrew's newborn surgery. He said they can almost ALWAYS get these babies to surgery and the ventilator will ALMOST ALWAYS be enough for these babies. He said "Worst case scenario...She will have to be put on the ventilator, which in most cases is for only a short time. She may have to open heart surgery at 2 weeks or so, but these babies mostly do fine!" We have not heard this! I was shocked! Honestly just last night Don and I were discussing about if she did not make it what were the plans. And I am glad we did, but we have so much more hope now. Anything can still happen, we still need ALOT of prayer! He actually said he would rather a baby be born with this than what Andrew has! That is also good to hear, Andrew lives such a normal life. Thank you for praying for Averie!!!!!!!

AVERIE'S HEART

A mom of another tetralogy of fallot baby wrote this and it is a perfect explanation of Averie's heart condition:

When my mom was 26 weeks pregnant, my parents found out that I have multiple congenital heart defects known as Tetralogy of Fallot with Absent Pulmonary Valve (TOF/APV).
TOF/APV is a complex constellation of congenital heart defects (CHDs). TOF (or "tet") is usually moderately straightforward as far as congenital heart defects go, and relatively "easy" to repair with open heart surgery, generally when the baby is about 6 months old, but for me will be a lot sooner (as described below). Tetralogy consists of 4 problems:
1) a hole in the wall separating the right and left ventricles (ventricular septal defect or VSD) which mixes the oxygen rich blood (red blood) coming back from the lungs with the oxygen poor blood (blue blood) coming back from the body;
2) overriding aorta (aorta shifted over too far);
3) right ventricle being too big from pumping the extra blood; and
4) stenotic (too narrow) pulmonary valve (valve between right ventricle and lungs).
These conditions are correctable with open heart surgery. But the complicating factor for me is that I also have an "absent" pulmonary valve, meaning it's not properly formed and doesn't work the way it's supposed to (one-way to the lungs). So the blood goes back and forth ("regurgitates") and makes the right ventricle pump extra extra hard out to the lungs (in addition to already pumping hard because of the VSD). Also, the extra blood makes the arteries going to the lungs way too big ("dilated") so that it has the potential to cause severe airway constriction and/or breathing problems.
These problems are also "fixable" but not necessarily a "cure," because the pulmonary valve needs to keep being replaced as I get bigger. Hopefully in the future this will be done with catheterization procedures, but currently it is still done with open heart surgery.

Little Averie

Averie will live if this miracle happens: Her pulmonary artery and aorta will slow way down in growth so they do not restrict her lung branches. It has happened. If not, a ventilator will not even help. If fluid starts to collect around her heart, she will not even make it to her birth. I Know A God Of Miracles....Please continue to pray.

Here is the latest and not so greatest...Our baby that is due in early January has been diagnosed with Tetralogy of Fallot, a very serious heart condition. She will have a surgery shortly after birth to make her pulmonary artery not so big as it is will cause major problems with her lungs and the rest of her heart. At this time they will put a shunt in her heart so the blood will flow correctly until she is big enough for them to put in a pulmonary valve which they believe is absent. The first two echo's showed all was normal and he just wanted us to go back once more to get one more shot of the two arches and the baby would not cooperate. This time was different. He scanned forever. He let me know half way through what he was afraid of. At first he thought she had Andrew's condition of Truncus Arteriosus. Then after he saw what he needed to rule it out, he said he is almost sure she has "Tetralogy of Fallot". An equally serious condition as Andrew's but once again, a very different one.
Aubrey's is fixed permanently, she had SVT since before she was born. But, her ablation last week fixed hers for good and she is of all meds!!!! Hers was an electrical problem. So we have really stunned the cardiologists again. Neither Andrew's nor Aubrey's are related and neither are genetic, trust me, if they were genetic, we should have stopped there! We got much advice and opinions form geneticist and cardiologists about having another baby after Andrew and after genetic testing, we got the green light. Then came Maci, no heart condition, thankfully. Now this one...I was a mess yesterday when I got the news. I kept thinking, we should not have had anymore! But, God created her, not me! My mind immediately went to NICU thinking. She will not come to my hospital room. She will not be discharged with me. I won't get to hold her for a long time as she will most likely be put right on the ventilator, according to the cardiologist. She will need surgery immediately. I might not even get to go see her before they operate! He has a plan for our lives. He has blessed us with some very healthy kids that have heart conditions. I hope that sound right. If you saw them on the street, you would never know. When they get sick, even seriously sick, they bounce back so, so quickly.
We are just asking all of you to pray for her and us. She needs healing. If not, pray her pulmonary artery will not get much larger as to cause major lung problems. They will confirm all her diagnosis on Friday morning when we go for another scan. Then we will discuss delivery(c-section), surgery, etc. As bad as Andrew's was, we just need that same grace that we had going through it. The waiting is the hard part. I have 12 more weeks of pregnancy. Baby is due in early Jan. My mom will need much prayer, too as she will have our other four children to care for while this all happens. With Andrew it was a total of 7 1/2 weeks before he came home! I would love that part to be shorter.
Of course, financially, God will provide as always! But we have to now consider saving her CORD BLOOD as they can use that later on for her surgeries and maybe Andrew's next one as well. I have heard that is very expensive and our private insurance does not cover this. Please don't feel sorry for us, only for those who will be pessimistic about our situation. We are hopeful and our faith will increase daily. We have a unique situation, but we get through it. (not alone) ALL emails, cards and phone calls mean so much to us, our support team!
It is not too late to pray this all will change. God can baffle doctors with miraculously removing tumors and He can finish forming her heart perfectly if He wants! We are prepared for both. Thanks in advance for your prayers!

Aubrey's Heart Procedure Friday

This week Aubrey, our almost 4 year old daughter, will hopefully see the last of her heart problem! She will be having a procedure called "Radiofrequency Ablation". Just before Aubrey was born we noticed her heart racing up to 302 beats per minute. It should only reach 160 for a baby. After she was born, she was sent to Children's Hospital in Little Rock, AR. She only had to spend 10 days of her expected 6 week stay! She has SVT, and takes a beta blocker every 8 hrs for this. She wasn't one of the babies to outgrow this condition.

During this procedure, done by catheters, they will cause her heart to race and find out where exactly her extra accessory pathway is and "zap" it. It should take 5-7 hours. We are excited about having this chapter in our lives complete! Please pray it all works out and they can get to it. Some doctors will not do this until the child is 6 or 8, due to their size. She is on the very SMALL end of 3, weighing 30 lbs.

Many people ask us how we had two heart conditions in the same family. They are completely unrelated and neither is genetic. Hers is a rhythm problem and Andrew's is a structural defect. Many doctors are pretty amazed, too. Andrew will never be completely free of his, as he will always have to replace his conduit as he outgrows it. But it should be less often in the future.

Anyway, please pray and we will update all of you as we know something.

September 2009

Just a quick note...Aubrey will be having a heart procedure done Friday, OCT 2nd in the early a.m. It will fix her heart condition of SVT, which, withour medication every 8 hrs. her heart races up to 302 beats per minute. She has had this since in utero. But if it works she will be cured forever. It is not open heart surgery, but still a procedure with major risks. Please pray it is successful.

Also, the new baby will have a 3rd echo don Oct. 9th since she did not cooperate again. The dr. os pretty confident all is normal, just wants two more pictures to be sure and she was never at the right position. The baby obviously thought it was her gender determination ultrasound!

Everyone else is doing great!

Update on our Family

I have finally found a spot in the new house where I can "borrow" a neighbor's internet! Things are going great for us. Andrew had a Cardiology Check-up with an echo and the doctor was very impressed. Aubrey had one also and her cardiologist is going to schedule her for her catheter ablation most likely next month. You know what that means!!!!!????? She will have her extra accessory pathway "zapped" and she will no longer be on heart meds and we should never have to take her back to the hospital with a heartrate of 280-300 bpm to have it stopped and restarted. This is major for us. The procedure comes with risks, like any. But she needs this!

We had the fetal echo done on the new baby and from what he could see, it looks great. We do need to go back in two weeks to make the dr. completely satisfied, she was soooooo squirmy. She waved a few times, got on her knees and flipped and flipped! He will give us a more confident answer then.
Matthew has started homeschooling and loves it. He cannot wait to read. Aubrey is also participating. Matthew turned five August3.

Maci had her first birthday August 14. She is so entertaining. She kills us with her dancing. When any music comes on, she slaps her right foot on the floor over and over. She rocks her baby in a pretend carseat and sings her baby baby, baby song. Very cute. She is short and chubby.

Our church here is only about a month away from moving into the new building they have been building for about a year. It is beautiful!

Mema And Papa Visit/Maci Walks!

The kids always LOVE when Mema and Papa come down for a visit. We took them to our nearest zoo in Little Rock. We had a Memorial Day BBQ at the church and the rest of the time we just hung out at the house, mostly outdoors. Maci leared to walk during their visit! She is now 9 months old!