Friday, October 30, 2009

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!!!!!!!

Saturday, October 17, 2009


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.

Thursday, October 15, 2009

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.

Saturday, October 10, 2009

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!
Ah Lord GOD! behold, thou hast made the heaven and the earth by thy great power and stretched out arm, and there is nothing too hard for thee: Jeremiah 32:17