Ava is still what they call "status quo". Not too many changes to the plan - just working on getting her bigger and stronger. She has gained 11 ounces in about twelve days which I think they're happy with. She now weighs 7 lbs 13 oz. The last 24 hours she has been very gaggy with her feeds and has thrown up several times. This wears her out and she's been pretty sleepy today. The nurses said she was fussy this morning but that they've decided she likes to be held - oops I guess I have been doing that a lot lately. Ava's heart rate has been under control for the last 36 hours and she has not had anymore SVTs. However, they had to come down on her Captiprol medication (which helps her heart profuse blood) because her blood pressure has been low. They are doing this instead of holding her Enderol which was causing her to SVT. Wednesday Ava can start having breastmilk again instead of Portigen formula. That's a good thing since we are running out of freezer space to store it in. Both our parents' refrigerators are full as well as our own.
Dr. Hirsch said Ava looks good today and if the ECHO is okay we'll just continue down this path. That's better for Ava but means there's no end in sight for us to come home. Missing home and family so much right now. Don't take for granted all the happy, easygoing moments in your life. Life is too short and there aren't enough of those moments sometimes. Still planning to come home for Bray's birthday on Thursday. I am excited to share his day with him but will have a difficult time leaving Ava. Although I will miss her, I know it will be hard to come back to this lifestyle after being in Niles over night.
Thank you Mark Grishaber for finally getting our snow covered boat out of the yard and into the garage. Thank you again, Jason, for all of your help with the dogs when Jamie and Bray are here with me. Thank you, Fran for dropping food off to Jamie and for the special gift, too. It will certainly come in handy. Hearts of Hope Foundation also sent us a VISA gift card to help families with expenses. There are so many wonderfully generous people in our lives. We appreciate all that you are doing for us!
Keep Ava and our family in your prayers, please!
Monday, November 26, 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)
Blog Archive
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2007
(67)
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November
(21)
- ECHO results
- 8 Pounds Yet?
- "Status Quo"
- Just an Update
- Happy Thanksgiving from Aunt Trace
- U of M Report
- What will the future hold?
- Jamie, this post is for you. Ava WILL get through ...
- Jamie wanted me to blog something, but her last bl...
- Broken Hearted
- Not Quite Ready to Leave ICU
- Not Even A "Whiff"
- Team Meeting
- Finally Some Good News!
- Watching and Waiting
- Quick Update
- 3rd Time is a Charm?
- For Mommy & Daddy
- Rough Times at U of M
- To good to be true
- Out of ICU!
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November
(21)
13 comments:
Jamie,
I'm so glad that Ava is doing well. She must have liked having her family around her this past weekend! I'm sooo happy for you and Bray that you will be spending his birthday with him at home! He will so appreciate and remember his day forever! Enjoy your day away...it will renew your strength to go back to Ann Arbor. Our prayers are still with sweet Ava!
Love,
Lori Brawley and her boys too!
Jamie-
Great news about Ava's weight gain! I am so glad to know that you have been able to hold her more and more:) It must feel so comforting to her as well.
We prayed this morning for Ava to have her best week ever so that you feel at ease (at least a bit more) about coming home.
Brenda needed a few pieces of Velcro today and I hope you don't mind, but I told her that I was sure that you had some. You are the Velcro Queen, you know.
I miss you-
M
Good night beautiful Ava! and Jamie. I have to say, if you needed me with you, I would be there every night you were alone in this situation. Your dad would have to get by!ha. I shopped for Bray today. I will talk to you tomorrow. Please take care of yourself and Ava. I just know all will work out. It has to!!!!!!!!!!!!! Good night and love to you both. Both of you girls are for all of us to worry and keep saying prayers for!
love always
granny and poppy
Jamie-
It's nice to know that sometimes Thanksgiving weight gain can be a good thing...way to go Ava!! My grandma always said, "You can never hold a baby too much." She was a pretty serious lady and I'm pretty sure if she knew anyone was implying that Ava was fussy because of that she'd give them a good old fashioned "what for" :). Ava's doing so well BECAUSE of all the holding and love. :)
I know right now it must be really hard to stay at the hospital and wait and wait espcially with the holidays. It's all going to be worth it on that day when you all get to come home. Sometimes it probably feels like that day is never going to come but it will and it's going to be the BEST day ever. You just have to be patient and let Ava do what Ava's going to do. (That's what Benny's cardiologist has said since he was a baby and although it's been hard for me to hear at times, it's been good advice for over 10 years now). It may sound like a sappy 1950s era song but time really does mend broken hearts. It's hard when the future is not so clear and on top of it babies just seem to have their own "clocks" which don't always work well in conjunction with our own. In the meantime we are all here on our end praying like crazy that time is good to Ava and it will be...it already has been very good to her. Just think of all those giant hurdles she's jumped over! Some of those were just HUGE. She's a champ (and her mom is tough too). :) Hang in there and remember you're another day closer to coming home.
Have a really good time on Thursday...Bray is going to be thrilled! :)
Hugs,
Brenda
P.S. On a lighter note...thanks for the Velcro. I can't help but think of the disco-era song "Dancing Queen" only change "dancing" to "Velcro".
:)
Jamie,
It's so good hear that Ava is gaining weight and that you will be able to spend Brayden's birthday with him. Enjoy your time home, Ava will be in good hands. I think Zeke and Abby are anxious to see you too considering their recent chewing escapade!
You are in our thoughts and prayers always! Let us know if you need ANYTHING!
Love,
Mark & Sara
PS-Mark said he can take to boat to get winterized. Just let us know where to take it.
Jamie -
What great news that Ava is gaining weight! We all knew she could do it - she is too much of a fighter as she has already proven to us all! Again, enjoy your day home with your boys! Keep the faith - we are all praying for you, your family and little Ava!
Ginger Andres
Keep up the great work, Ava! I'm glad you are able to spend so much time in your mom's arms - remind the nurses that in addition to being a newborn you are a little girl and sometimes fussy 'just because'.
Jamie, keep it up, you are doing everything perfectly.
Thoughts and prayers are with you!
Emily
Good morning Ms. Ava! I pray you are doing well today. Tell your mom I will call her later. I think I still have to get 1 or 2 more things for Bray. I sure wish you could be with us on your brothers birthday. But for now, rest and gain weight little one! We love you and are always praying for you every second of day
granny and poppy
Jamie,
I just got back from Walmart and who did I see Birthday shopping with his Aunt Heather?? Your Brayden of course. He was quick to tell me that he was going to be "4" on Thursday and even showed me how many fingers "4" is. He looked very content and happy to be with Jamison and Aunt Heather, who were of course taking very good care of him. Just thought as a mom you would want to hear this little story,,,hope it brings a smile to your face.
Take Care,
Andrea
Dear "Mommy",
It's SO good to see good news about your little angel, and I'm so glad you're going to be able to come home for Brayden's 4th birthday.
Thank you, Carol, for your long friendship and now expertise. See..maybe that's exactly WHY you took up nursing!
Love, Grandma Wegner
Jamie,
It was so good to hear all the time you are able to spend holding Ava. I know she draws strength from that.
We want so much to help, even if it is just to lend refrigerator space. Please let us know of anything we can do.
Miss you!
Janelle
Jamie,
We just found out about Ava's blog and wanted to let you know that we are keeping precious Ava in our daily prayers and wishing only brighter days for you and your family!
Love,
Angie & Brad Williams
Good morning sweet Ava!!!! Please have a great day-remember those cute pink boxing gloves-you are a fighter!! We love you so much.
granny and poppy
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