Hello everyone and welcome to Ava Christine's Blog.
First a little info about the new edition to our family.
This beautiful little girl comes to our family after many years of trying on her parents part as well as her being the first girl in 19 years. Yes 19 years! So to say that she is going to be a little spoiled is putting it very lightly.
Ava Christine was welcomed into this world on September 29 2007 by her mommy Jamie, Daddy Jamie, big brother Brayden, grandparents, aunts, uncles, cousins, and numerous friends. Shortly after Ava's arrival the wonderful medical staff at Memorial hospital of South Bend found what they called a murmur in Ava's heart. After some testing little Ava was transported to Motts' Children Hospital at the University of Michigan in Ann Arbor. Jamie and Jamie were informed that little Ava has a heart defect that could be life threatening and that she needed to undergo open heart surgery to fix the defects. So, on Tuesday October 2 2007 Ava was operated on by the wonderful medical staff at the U of M. What this team of doctors did to Ava is incredible. First of all Jamie explained to me over the phone today just what problems Ava's heart has endured. Ava's heart has a couple of different problems. The first is known as Interrupted Aortic Arch. The following info about interrupted aortic arch is best explained by the U of M Cardiac website, "Interrupted aortic arch is a very rare heart defect that occurs when the aorta does not develop normally while the baby is in the mother’s womb. It comprises about 1% of all congenital heart defects. It usually occurs along with other heart problems such as
truncus arteriosus,
ventricular septal defect,
transposition of the great arteries, and
aortic stenosis.The aorta is the large blood vessel that arises from the left side of the normal heart and takes red blood out to the body. The first part of the aorta, called the ascending aorta (1) arises upwards. It then curves leftward forming the aortic arch (2). The aorta then curves downward towards the lower body, and this part is called the descending aorta (3). Three blood vessels exit from the aortic arch and supply the head and arms with red blood. These vessels are called the innominate artery (4), the left carotid artery (5), and the left subclavian artery (6).In babies with interrupted aortic arch, there is a complete blockage between the ascending and the descending aorta (1). This means that there is no direct way for red blood leaving the heart to reach the body parts that are "downstream" from the blockage. The site of the defect varies (2) and may or may not involve the take-off of the head and neck vessels. In most babies with interrupted aortic arch (70-90%) there is also a large
ventricular septal defect (3).In newborns with interrupted aortic arch, the only way for blood to bypass the blockage is via the
patent ductus arteriosus (4). Prior to birth, this small blood vessel permits blood to by-pass the baby’s fluid-filled lungs. One or two days after birth, this vessel usually closes on its own. In a baby with interrupted aortic arch, if the duct closes, blood can no longer reach the lower body. This can cause the baby to suddenly become very ill. Therefore, after the diagnosis is made, a medicine called prostaglandin is used to keep the ductus arteriosus open until surgery". (
http://www.med.umich.edu/cvc/mchc/parint.htm)
So how did the doctors fix this? "Interrupted aortic arch is a serious heart defect that requires surgery soon after birth. The goal of surgery is to create remove the blockage. This used to be done in a two-stage operation but is now done most of the time in one stage. The two ends of the aorta are sewn together (1) and the patent ductus arterious (2) is tied off. Sometimes a patch is needed to reinforce the repair. If present, a patch is sewn over the VSD (3)". (
http://www.med.umich.edu/cvc/mchc/parint.htm)
In #1 of the picture below is the part of Ava' heart that was repaired.
9 comments:
Jamie, I know there isn't anything that anyone can say or do so that you won't worry so much. You are her mother and it comes with the territory. Just keep believing that He is watching over her and you as well. Like we have all said, she will be ok.
Try and get some rest, not just for yourslef but for Ava as well.
We all love you and yes we continue to pray daily for Ava's speedy recovery.
Love U, Tracy
Jamie-
You are right--you do need rest. When you are at the hospital with Ava you need to be attentive to and strong for her and you can only do that by refreshing yourself as much as possible. I can't even begin to imagine how hard it is to leave that room each night, but you will find the strength to do that and it will get easier and easier each day and you will grow more and more comfortable with the nurses and Ava's adjustments.
Look at what ALL you have had strength for so far!! As Tracy said, God is watching over and taking care of both of you.
Love, M
Jamie,
I have been following Ava's progress through your blog having connected through Molly Brawley's blog. I had the same kind of breast cancer as Molly, the very rare, unusual ACCB. Anyway, I am doing fine and am in complete remission. I have been reading your blog sending prayers to Ava and your family all the time. I admire your courage and strength, your children are very lucky to have you as their mom. Having three children myself I know how far we will go as mothers to ensure our children's well being and happiness. I am also a nurse on a very busy post surgical, trauma floor at a major trauma hospital in New Jersey. That said I am going to speak to you as a nurse. For your daughter's sake you need to get sleep every night. The road ahead is long and she is going to need you more and more as time passes. You need to put your faith, as you have been, in the doctors and nurses that they wouldnt have moved her to this floor with less monitoring if they didnt feel she was well enough to handle it. I can imagine how hard it is to turn her over to them and God (for he never leaves her side) every night when you leave but you need to take care of yourself first. For without you there will be no her. If you fall apart because you are not well rested than you wont be any good to her.
I was moved to write to you because I see caregiver burnout so often. I tell my patient's family members all the time to go home and sleep, the doctors wouldnt have put them on our floor were we dont have such strict monitoring as in ICU if they didnt feel they were ready. Trust me they dont want something to go wrong almost as much as you dont. Have faith Jamie, you have been so incredible, but rest is essential, I keep you both in my prayers, but now especially you. Ava will have no memory of all this trauma, but you will never forget. The heavier burden sometimes is the mothers.
Much love and peace,
Kristina
Jamie -
Yes, you must get rest. It sounds easier said than done - but it is true. Ava needs to have you there rested and ready to take on the world by her side. She has shown everyone what a fighter she is. Her strength at this young age is astonishing and she has done so well. Rest up and take care of yourself. Our prayers include you and your family daily. Keep strong, keep praying and you will all be home together again soon! There are a lot of people who can't wait to see you both!
Ginger
Jamie -
I pray that you will quickly find trust in your nurses, I know it is so hard to rely on others to care for Ava as you would.
It takes less than 1/2 a second to fall in love with your little girl, with that smile of hers - her nurses will have an immediate connection and won't let you or her down, you'll see.
Take care - lots of love and prayers. Emily
Jamie, please just try to remember that that once you get to the floor you are that much closer to going home. Truly, it's a big sign that she's making progress although right now it probably doesn't feel that way. I know I'm going to sound like a broken record but you need to take care of yourself too. If you can, try to schedule a volunteer to come and hold Ava during the day while you go back to the house to take a nap. Also, if you're worried about vomiting at night you can have them raise the head of the bed to help. I know it's hard when you are the only one there. It's scary and exhausting but please know that we are all here on end praying even more for God to hold you both in his tender care. Truly you are another giant step closer to coming home and we're all here waiting for that GREAT day. Hang in there and please take care of yourself too.
-Brenda
Hi Jamie,
I was really good to see you again last night. I am glad to hear that you finally did go back to get some rest. I really liked what Kristina said earlier...That Ava will never remember any of this, but you will never forget. You are an incredible mother who has shown incredible strength through all of this. I admire you very much! You and Ava are always in my prayers. I will see you again on Thursday after work. Please call me and let me know if you need anything special before I come up there. I will be happy to help in any way that I can. Love you very much, Jenny
This goodnight is for jamie Lynn Weaver Zimmerman. (Ava-forgive me for not putting you first this time-I love you and I ask God every day to watch over you.) Jamie-All the right words have already been said. I cannot fathom being in your shoes. But as a mom in general, please take care of yourself and I am so glad to read that you know you need to sleep. We as moms, can't do it all 24/7. We can only have faith and love and believe. Your words moved me. I know you are not big on hugging, but you are getting lots of hugs in my thoughts right now. Good night Jamie. Love you
Fran
You write very well.
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