Update on our sweet patient

Boy am I getting an education...what a whirlwind the past 24 hours have been. Adam and I have been discussing how quickly things in life can change; change priorities, change plans, change outcomes...We are so thankful that though this situation has snuck up on us, it does not and has not surprised God. He is in control and for that we are so grateful and at peace.


This afternoon we were told she definitely, in fact, does have RSV. Her retracting is still going on (where her body shows visible signs of indentation around her ribs/lung area) with each breath that she takes as she struggles to breath, she still has a terrible cough and wheezy sound, but its not due to lack of oxygen its the RSV virus running its course, her pulse ox has stayed at 100% since late last night which is great!

There is something called patent ductus arteriosus (PDA) which is a heart problem that affects some babies soon after birth. In PDA, abnormal blood flow occurs between two of the major arteries connected to the heart. These arteries are the aorta and the pulmonary artery.

Before birth, these arteries are connected by a blood vessel called the ductus arteriosus. This blood vessel is a vital part of fetal blood circulation. Within minutes or up to a few days after birth, the ductus arteriosus usually closes (which is normal), but it hasn't for Ava Jane.

For Ava Jane, the ductus arteriosus has remained open but it actually is a good thing in this case, because there's medication that they can give her called PGE, prostaglandin E. The medication isn't used to repair coarctation of the aorta, but it can be used to control blood pressure before surgery. And right now, Ava Jane's blood pressure to her lower extremeties is very low, they can't find a femoral pulse or one in her foot (which in normal babies they can). This drug helps keep the ductus arteriosus open, providing a bypass for blood flow around the constriction, until the coarctation (or narrowing) is repaired. She is on this medicine and must be closely watched so we are still in the CardioVascular ICU. When they did the second Echocardiogram it showed that this medicine is helping, they didn't think it would be effective because technically, usually the duct is closed by the time babies are her age, but thankfully, hers is still open! And the meds are seeming to help, so they're keeping her on it, which should help her prepare for surgery by not making her heart work as hard as it has been to pump to the body.

Her number of breaths per minute have been good, the pulse ox has been great and the heart beats have been within the normal range too, which we are very grateful for. They are still allowing me to nurse her as long as she doesn't get too out of breath, so hopefully up until surgery we can continue doing that.

She will have a breathing tube and a feeding tube for several days after surgery, so once she goes in for surgery we won't be able to hold her for several days which I will certainly miss! I plan to continue pumping so that we can feed her breast milk through the tube until she's able to begin feeding again normally. They've told us she will have at least one chest tube, probably two, that will help remove fluid/blood from her chest. As far as the specifics of surgery we still don't know whether it will be through the middle of the chest (open heart surgery) where she'll have to be on a bi-pass heart/lung machine or on the side of her chest in a thoracotomy (where they go in between the ribs on her side)...we are praying for the second option, so please pray that way with us. We hope to speak to the surgeon in the next day or two (depending on how quickly she can get over this RSV and the fever).

The nurses are constantly commenting on how big she is (all the babies up here are teeny tiny little shrimp) so our 11 lb. 3oz, 2 month old seems gynormous, which is another thing in her favor! Thank you LORD for your provision! God continues to be our "Jehovah Jirah" our Provider, we are so grateful for a God who cares, who knows Ava Jane's in's and out's perfectly, He created her--He knows the number of hairs on head, He made her, He knows her better then we do and He holds her strongly in His mighty hands! We feel quite confident in the care that she's getting here at ACH and have been impressed with everyone we've encountered, from the CVICU nurses we've had (Lauren, Sarah and Lindley) to all the Doctor's we've seen. Everyone has been tremendously caring, supportive and encouraging! Though what Ava Jane has is critical, and extremely necessary; meaning we will not leave here until she's had surgery; the Doctors here, along with several other prominent Cardiologists (Dr. Murphy and Dr. C.D. Williams) have all confirmed that what we're dealing with is fairly "simple" as far as heart surgeries can be and that it is a very "fixable" condition, so for that we are thrilled! As we know more I will post it on here. Thanks again for joining us in prayer!