Ava had a low grade temperature this morning but nothing has come of it. Praying she's not getting sick. They plan to send Ava out of moderate care tomorrow and onto the regular unit or "the floor" as they call it. This will be another adjustment but we will have the same nurses and nurse practitioners that know Ava pretty well. I am hoping to share rooms with another family that we have gotten to know pretty well. The mom's name is Courtney and her baby is Ryer. He has a different heart condition but has been here as long as Ava and has had many obstacles to endure. She is also here most of the time by herself and she has a two year old daughter at home. They also will be here until after Christmas so we seem to have a lot in common.
Feeling pretty blue today for many reasons. Sundays are always hard on me. The last two weeks I've been able to see my guys for more than just two days. Looking ahead at this week seems dreadfully long. Five days until I see them again. It seems like forever. I'm hoping that if Ava gets to room with Ryer I won't feel so alone here.
Jamie was sick the entire weekend so Bray hung out with me at the hospital most of the time. It was harder to spend quality time with him since Jamie couldn't take shifts at the hospital. Everyone commented about how good he was. It's too bad he has to spend his weekend cooped up in a hospital room but he doesn't seem to mind too much. Now I feel like I might be getting a sore throat. Praying I don't get sick - I don't have time for that right now!
Thank you, Dad, for picking the boat up to winterize it and get it in storage. When Jamie and Bray got home today Randy Wideman was putting Christmas lights and decorations on the house and in the yard. It was suppose to be a surprise. Thanks Randy and Emily, that was so thoughtful of you. We are trying to make the holidays as special as we can for Brayden's sake. It was so nice to see nurse Cheryl today. Thanks for coming to visit Ava from ICU. And, Carol Eull, you have no idea how much it meant for me to come home for Brayden's birthday last week. I didn't worry a bit about Ava (well maybe just a little) but I knew she was in good hands. I knew you would be cuddling her in your arms all day long just as I would if I were there. I cannot thank you enough for that. The day away was something I really needed.
Cherish all that you have and remember we all have so much to be thankful for! As always, thanks for your prayers.
Sunday, December 2, 2007
Subscribe to:
Post Comments (Atom)
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)
Blog Archive
-
▼
2007
(67)
-
▼
December
(18)
- News
- Quick Update
- Stocking full of ODDS!!
- Odds equal Hope
- Critical
- 12 hours of surgery
- Praying for Another Miracle
- So Many to Thank!
- Long Day
- New Surgery Date
- Quick Update
- ECHO Results
- Echo date moved
- Hanging Out
- A Better Day
- "The Floor"
- Ava had a low grade temperature this morning but n...
- Change of Plans
-
▼
December
(18)
10 comments:
Good night sweet Ava and jamie. I am so sorry Jamie you feel blue today. That I am sure is so normal. You have every reason in the world to have blue days. We all do as humans not near the reasons you have. I pray you and Ava are not getting sick also. Carol is an angel. That is why she has been my best friend for 18 years. And it was so wonderful to have you here with Bray and your family. I do wish I could do more for you. You sure do have some amazing friends! I hope you get to share room with your friend also. Your dad and I head to Fort Wayne tomorrow, or I would offer to come and stay for day or night or whatever. You should not be alone so much. Well soon we will have Ava home and you home and we will celebrate the miracle of Ava. Sleep well Jamie. Give Ava a hug and kiss from us. And tell Bray we love hime also.
good night sleep tight
granny and poppy
jamie, I'm having a blue day as well, but as soon as i click on this blog and see those sweet pictures of ava i instantly feel better. She has touched so many lives already, i can't wait to see what she has in store for the future. Be strong...love, erin
Jamie -
I hope everyone is feeling better! I'm sure it was absolutely wonderful to be home for Brayden's birthday! Ava is doing so well, growing so big and strong - everything will work out and you will both be home soon. You are in our prayers daily!
Ginger
Jamie,
Carol Eull is keeping me informed as to how you and Ava are doing. I was so glad Carol could help you out by spending the day with Ava. Keep healthy and enjoy every minute you have with your sweet little girl. As always you are in our thoughts and prayers.
Hell osweet Ava. This si short for poppy and I are on our way out of town. Poppy is keeping me busy for the month of Decemeber. Store openings, xmas, oh well. The most important thing to happen right now, is to get you better and home. Especially for your mom and dad and brother. Oops, your mom is going to make fun of me again, for I mistyped because I am in a hurry. Sorry! I love you Ava. I might not be able to check on you as much for 3 days. But I will still know how you are doing all the time little cookie of ours!Please get rid of that fever, and I hope your mom is not getting sick. We love you ava. Very much. You are such a doll. And you look so like your mom. Have a good day and rest and eat!!!!!
granny and poppy
Jamie -
I pray for another week of steady improvement. These long weeks must be very difficult, but just remember everyday is one day closer to being home!!! Hope the move went well today - I'm sure boy Jamie has given his stamp of approval on Ryer?! I bet Ryer's family is hoping for such a special roommate as well!
My thoughts and prayers are with your entire family - especially for Ava's continued improvement and your health - stay well.
Emily
Jamie,
So glad to hear you are on a regular floor! I pray that you are able to be with Ryer's mom and I am sorry that you are so lonely. I truly wish there was something I could do. We continue to keep you in our prayers.
Love,
Emilee
Hi Jame!
I just wanted to let you know that I will be up to visit you Tuesday night and I am bringing dinner! I am making California Casserole for you and my friend Heidi. Her daughter had surgery today. I am not sure if you have met her yet or not, but we can go say Hi to her tomorrow if you want. I will call you when I am on my way. Take care of yourself. Continued prayers for Ava as always! Love you, Jenny
Hello Ava!!!!!! I pray you are having good days still!!!! Its Tuesday eve. and granny and poppy are getting ready to go to business dinner. I would really rather be there with you and your mom. I am so glad jenny is coming to see you tonight. I worry about you and your mom! Granny and Poppy are saying prayers for you all the time. Please get better and keep on smiling little one. God Bless.
love
granny and Poppy
Hello Jamie,
I have been thinking of you often. I visited your blog a few times and finally figured out how to create acct to post a message. I guess you could say I am not that saavy on the computer. I am glad I had the opportunity to meet you while we were there, just wish it were under different circumstances. Please know I am keeping your sweet baby girl and your family in my prayers during this difficult time. Ethan has an appt there next Tuesday and I will try to stop in for a visit while we are there. If you can think of anything that I might be able to bring for you or if you need anything at all, please just let me know.
Blessings & heart hugs,
Sandy, heart buddy Ethan (7,HLHS)and family
www.heartsofhopemi.org
CP- Ethansheart
Post a Comment