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!

Please pray for this family on this link:

I would like for as many as possible to be praying for this family, ALOT! I cannot even imagine, all I could do was cry. They just lost their 9 month old baby girl yesterday, one who, at birth until she was about 4 months old, was perfectly healthy. I am so thankful for my kids and this makes me aware that I do not pray enough for their health! If you can bear it, look at the video of all of her pictures. I could not help but think of my Maci, who is the same age. Wow...

http://jenmagee.blogspot.com/

April Fun

We really tried hard to make the best of Andrew's stay for the other kids, too. They came to visit Andrew a few times and got to play in the very fun playroom. And, not to mention the cafeteria and playground. Dad was busy!

Hospital days

Here are a few pictures we took while Andrew was at Childrens Hospital for his open heart surgery. He did great, made many new friends, all doctors and nurses, of course. They said he would be home in 5-8 days and with his complications he still made it in 8! Strong boy!!!

Pre-Op Day

Today we were at Children's for many hours checking everything out with Andrew. He is A-Okay and ready for surgery. It was neat to see how he gradually went from being very afraid of even getting weighed or measuring his head to sitting on the lap of the anesthesiologist just for fun. He warmed up to everyone, it was reassuring to me. He got to see the playroom on the cardiac floor and was excited about it. The facilities there are so nice. We will have or own access to Internet at his bedside so we can keep everyone very closely updated.

The surgeon surprised us with saying most likely 5-6 hrs as opposed to the 8-10 we were originally told. And the stay of 5-7 days, maybe sooner, we thought 8-10 average. If I could only fast forward until this time next week!!!

Here are a couple of pictures we took today. He was sword fighting with tongue depressors. He really had a very fun day.

Spring!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Love the weather, Love Hot Springs, Love my kids!!!! We have been having a blast outdoors. Matthew has learned how to ride his bike without training wheels! We got a new dog, a two year old yellow lab named Abby. We finally got smart and did not get a new puppy, she is an awesome dog. The kids are attached already.
Andrew's surgery is in 8 days, scary, I know. He is doing well, just trying to keep him well.

Two Weeks Left, YIKES!

Andrew will be having his second open heart surgery on April 9th. He has outgrown his conduit that was put in his heart at 3 1/2 weeks old. He will need this done every time he outgrows it, but should be spaced out alot further than 2 years. It will be starting about 7 am and lasting anywhere from 8-10 hours. It won't be as complicated of a surgery as the first, but getting in is a little more time consuming. They told us it is like peeling an onion, very tedious. Once he is out of surgery, he will be on the ventilator until he wakes up and he will have many wires and a few chest tubes and monitors. From what we understand, as soon as he wakes up, they will take out the ventilator, which is a huge relief for me as I was picturing him waking up very confused and trying to take it out. I was happy to hear this. He will be in ICU the whole time, but after his chest tubes are removed, he can go to a step-down unit where I can stay with him. This is where he will be recovering until he is discharged. They expect him to be walking and riding a tricycle in the halls in a matter of 4 days or so, hard to believe. He could potentially come home in a week or 10 days, that is the plan. It seems so different from his newborn surgery where he had to stay for 4 weeks for recovery. I am expecting him to do great! I do worry for his fear of doctors and nurses. He is terrified, mostly due to his monthly Synagis shots where the two nurses come in the exam room and move the table he is on out a little and, with one nurse on each leg they count to three and give one shot in each leg at the same time. The way they do it is scary. So now, even a stethoscope is freaky to him now. But, overall, I think he will do very well. We are not taking him indoors anywhere until then, keeping out germs so he does not get sick before the surgery. So, pray or him and the other kids, too. Maci is so attached to me right now. Bad age for her, 7 1/2 months. But it should only be 10 days at the most.

Snow One Week, 70 degrees The Next Week

Wacky weather, but we enjoyed all of it.

Almost 6 Months Old Already!

I know, we cannot believe it either! Our youngest child will be 6 months old on Valentine's Day. She has been crawling, Maci style, for about a month already. I was not ready for this for a couple more months, but she is following in Andrew's footsteps of doing everything early. Poor Andrew has had an ugly stomach virus, Rotavirus this week. It has been rough on my poor guy. He is shrinking, and I wanted to fatten him up before surgery, we'll try to catch up. He has been stuck at 24 lbs forever. Maci is catching up quickly, 16 1/2 lbs.

Another Great Sunday

We almost NEVER go to Burger King, but the kids chose it Sunday night after church. We had fun. nevertheless. Also, a picture of the "Supermen" in my life and a picture of the kids at the aquarium. We cannot wait for warmer weather so we can do all of the fun outdoor things here in Hot Springs!