Ava is doing fine. Her weight gain continues to increase steadily. Dr. Hirsch thinks she can even see a fold or wrinkle starting on her wrist as it gets more chubby. We have had some okay days (low stress) here lately. Last night she did start to PVC continually for about an hour and a half. A PVC is the irregularity of her heartrate. We haven't had a problem with these PVCs in awhile. They started around 10:30 p.m. but were done by 1:00 a.m. She hasn't had another one since. Oral feeding (20 ccs) three times a day is going well. Most days Ava is awake often and alert. She's usually in a good mood and gives lots of smiles. We are enjoying our walks around the unit.
Ava's next ECHO is in one week, December 14. If the diameter of her anulous (area around where the mechanical valve will go) has grown to 15mm they plan to do surgery the week before Christmas. While this won't make the holidays very jolly, it will hopefully all go well. It's our chance to move forward (hopefully) and get closer to coming home. Tomorrow will be ten weeks that we've been here. It seems like a lifetime.
Carol Eull has offered to come back next week to stay with Ava while I come home. Ava is stable enough that I feel comfortable leaving. I plan to have Brayden stay here with me Sunday night and then we'll come home together Monday. I will stay another night at home (the second in ten weeks) and return to U of M on Tuesday. We are going to plan on getting our Christmas tree Monday evening. It will be nice to spend time together as a family outside of the hospital. I only wish my baby girl could be with us too.
Rhyer, Ava's roommate, had heart surgery but is now suffering from some GI problems. He is 2 days older than Ava and has been here since birth. One of his stools tested positive for blood again this week which slows them down again. Courtney feels that things are never ending for them, too. She is very frustrated. Now that we've gotten closer it's hard to see her suffer. My heart aches for their situation because I know how incredibly difficult it is to have no end in sight. Please keep Rhyer and his parents in your prayers along with Ava.
Friday, December 7, 2007
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Ava with Mommy & Daddy
Isn't she beautiful!
It's A Girl!
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.
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.
Before surgery
The Next Step
The next step in repairing Ava's heart was to fix what is known as Truncus Arteriosus. Truncus arteriosus is "characterized by a large ventricular septal defect over which a large, single great vessel (truncus) arises. This single great vessel carries blood both to the body and to the lungs". (http://www.americanheart.org/presenter.jhtml?identifier=11073) Below is a picture of what Ava's heart was like before surgery.
Before Surgery
After Surgery
The above picture shows what the surgeon did to repair Ava's heart. "Surgery is required to close the ventricular septal defect and separate blood flow to the body from blood flow to the lungs. This is generally done early in infancy to prevent high blood pressure from damaging the lungs' arteries. A patch is used to close the ventricular defect. The pulmonary arteries are then disconnected from the single great vessel and a tube (a conduit or tunnel) is placed from the right ventricle to these pulmonary arteries. This is sometimes called a Rastelli repair". (http://www.americanheart.org/presenter.jhtml?identifier=11073)
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19 comments:
Jamie -
I'm glad you've finally got a little bit of relief - hanging out has never been such a big deal! I hope you enjoy your weekend with your boys - I can only imagine how excited Brayden is to enjoy the weekend with Mom and Sister!
I'm glad to hear of such great progress! I'll keep praying!
Emily
Jamie,
Just need to let you know how you continue to amaze me with your concerns for others in the similar situation as Ava. Not only are you hurting, worrying, stressing, etc. with Ava's condition, you still make time to try and comfort others. This is what makes you one the most wonderful human beings on this earth! I can only hope that if anyone else ever has to go through anything remotely close to what you, Jamie, Bray and Ava have gone through these past fews months that they and I would be as strong.
Keep amazing us, YOU are inspiration to mothers everywhere!
I love you Jamie.
Tracy
Jamie,
Im glad you got my note. You are nothing less than amazing! Im sure your 'will' alone flows through the hall of CS Mott. You are much stonger than you give yourself credit for. Im lured to this blog often, but feel I lack the ability to help you. Maybe its the lack of knowing what to say. You have such an incredible support systems of friends and family, you are truly blessed. I can say without a doubt you, Jamie, Brayden, Ava (along with the Meeks and Molly)(along with Ryer and the other babies) are never left out of my prayer. NEVER.
PS Tim has been working up there since last week, he comes home on the weekends, so if you look out one of the windows and see a scruffy looking guy all bundled and working, hes doing it for us here at home (we miss him), give him a wave :o) Merry Christmas, Amy Archer
Jamie,
The good news seems to keep on rolling! Sounds like you are feeling a bit more content. It is such a relief when you have a plan. My boys were next to me as we read your blog tonight and we took a scoll down through the pictures. WOW! How far little Ava has come since her birth. It was great to hear that you'll be getting another "break" from the hospital. You sure need it!
We're still praying for what you need!
Love,
Lori, Chris, Tate & Connor Brawley
Ava Christine- we are so happy you are on a good road. Thank You God. Very Much. I am so glad to hear your mom is coming home for a day or 2. Carol,whom is an angel to both of us, I hear will stay with you. Well again, other than your mom (and me) you couldnt be in better hands! Oh yes Ms. ava I will include your grandma and aunt Heather! We love you ava. stay tough and safe. When you come home, what a party we will have for you! Lots of pretty dresses, and all os wanting to hold or touch you. Plus it will be wonderful to see that pretty smile of your moms. Good night sleep tight to you and your mom dad and especially Brayden!
Good morning Ms. Ava. This is short, for which I am sure most are saying "thank goodness", granny is taking 4 of the grandchildren to see the Nutcracker. I have been taking the oldest girl, Hannah, you will meet her someday, for 6 years now. And she is 11 1/2. Your cousin Jamison went last year, but he didnt want to go this year. Your other cousin Luke, whom is going, will flip when he finds out Jamison isnt going!ha In a few years I can take you also. You will love it! The girls are in heaven.Madison, another cousin, is going, this will be her first time and she is 5. Wow-we will see, she is a little loud but lots of fun. The point is I will be so excited when you can go with us also. Have a good day Ava. Stay strong. Have fun with Bray and give him kisses from granny and poppy.
love you!
Ditto..ditto...ditto
Love, love, love
Great-Grandma & Great-Grandpa Wegner
Hi Ms. Ava! It is granny! I am just writing to say good night and sweet dreams. If you heard your name alot today, it is because Hannah and I kept talking about you today, and Madison remembered kissing you on thanksgiving! Oh yes, I mentioned Madison today, about going to Nutcracker. She was wonderful! all of the kids were great ava. As I know you will be. Madison whom is loud and a clown, was quiet as a mouse! She wants to dance now. So I think someday, when you can come too, you will love it and want to dance also! As pretty as you are Ms. Ava-you will be great at whatever you do! and all of us want to take you places someday. That will happen. More prayers are coming your way. Have a good night with sweet dreams, and know that all of us love you, think of you, pray for you, talk about you, and we all know that you are a miracle to all of us. You have brought so much love and togethernes for us all.
good night.
love you and your mom and dad and Bray
granny and poppy
Jamie,
I am so bummed that it didn't work out for us to come and see you today. I was so looking forward to seeing both of you. I am glad that all is going well. Have fun at home tomorrow. We will continue to pray for Ava as well as the other babies that need it.
Love,
Emilee
Jamie & Jamie,
Just wanted you to know how much we enjoyed being with you guys Fri. & Sat. Ava was such a joy to be around. I don't know if you noticed, but when your Dad was walking her in the stroller around the hospital and everyone was stopping us to look at her, he was acting like a PROUD GRANDPA!! What ticks me off is he wouldn't let me push her!lol!!
But it gave you a little time with Brayden,
See you later,
Love, Mom Z
Jamie -
What great news on Ava new found chubbiness! She seems to be progressing well - she wants to come home too! I hope you enjoy your time at home with Jamie and Bray - I'm sure there will be plenty of "girl talk" happening with Ava and Carol. She will be in very good hands! Again, as always, you are all in our prayers!
Ginger
Hello Zimmerman's, just checking in on little Miss Ava and all of you. I am happy to hear that you had a better day on Friday. Hopefully your weekend was a nice little escape for each of you. Bless Carol Eull for giving you the opportunity to feel comfortable enough to do so. I would trust her with my kids anytime....(how about this Friday at 7? hahaha, j/k!)
Anyway, I'll continue to pray for each of you and hope that this "chapter" will soon be over and that you can bring your beautiful baby home.
Good morning sweet Ava. I heaer from your Aunt Carol, and she is on her way there. Your mom is coming home for the night with Bray. I know you will miss your mom, but be happy for she is with Bray and does need to make a special day for him. But I know that she will never stop thinking about you for one second little one! But with your angel Carol, you will be in wonderful hands. I can see it already. One day your Aunt Carol and I are going to be fighting over you! Ill tell her you like me the best, and she will be saying, no you like her the best! You are one lucky little cookie in so many ways. Number one, you have alot of love going your way. I did hear that you were not having the best of days yesterday. So sleep little one, rest and have sweet thoughts. Show Carol those beautiful smiles!!!!!!!!!
love you
granny and poppy
Jamie -
I'm sure your boys enjoyed your visit and I bet Ava filled Carol's ear on what a wonderful family she has.
Still Praying!
Emily
Birdie,
A chubby wrist fold or wrinkle...hooray! I'm so glad you felt comfortable enough to go home and spend the day and night with your boys. Please take good care of yourself and get plenty of quiet and rest. I can just picture you rocking sweetie pie Ava and singing to her.
Hugs to Brayden and Jamie...thinking of you, as always, and love you very much,
Aunt Stace
Thank you for sharing your blogspot about your precious little Aval!! What an inspiration... It was hard reading it through tears!!
It was so good to see you bringing Brayden to school today! He's such a cute little guy!! We will continue to keep you and your family in prayer and believe for more breakthroughs leading to Ava's homecoming!!!
In Christ's love, peace, and comfort,
Holly a.k.a Katie's Mommy :-)
Good morning sweet Ava! I bet you are telling Carol all kinds of stories!!!!!!!!!!!! Granny needs to figure out what pretty things I can get you for Xmas! Actually just having you well is the best Christmas present for all of us!
Well little one, I have chores to do. I miss you so much. I am sure we will be seeing you next week!!!!!!!!!! I want to hold that chubby hand!
love you and will talk again later
granny and poppy
Dear Sweet Zimmerman's,
You've endured alot in the last 10 weeks, so have little Ava. She's got all your strenth and love inside her - she will be just fine! We love you and miss you and are so glad that the good news is continuing to come! God bless and remember that Christmas is what we make it - so it will be wonderful for you all together, whether you're here at home, or at UofM at home!
Love, The True Crew
Jamie,
We are glad you are going to be home for a little while. We miss our neighbors and our new little friend Ava! We are glad she is doing well and can't wait to see her and hold her. We pray for her daily and your lovely family. Please let us know if there is anything at all we can do.
We would be more than happy to help with the Dogs!! Anything!
Please do not hesitate to ask! We miss you all and you are in our prayers and thoughts always. Love to you all and Ava! What a beautiful baby girl!
Love,
Kelly, Bill and the Boys
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