Walked into Ava's hospital room this morning and the last two drainage tubes had been taken from her chest. It's so nice to see a little chest and abdomen instead of so many tubes. They continue to wean her blood pressure medications, as well. The most exciting part of the day for mom was when she started receiving my breast milk through a feeding tube. I finally feel like I am helping my little one in some way. Right now she is only receiving 1 cc an hour but she is tolerating it well. Tonight they plan to try to "sprint" her. This means to turn off the breathing tube for one hour at a time (as long as she can tolerate it). They will do this three times over the course of 24 hours.
Dr. Hirsh (Ava's surgeon) came in and called her "Little Miss Sassy Pants" because they were able to remove her chest tubes. She is happy with Ava's "slow but steady" progress and is hoping that the MRI tomorrow will not determine a need for another major surgery. She feels that Ava would not be doing as well as she is if her pulmonary artery was severely defected. It is possible, however, that they would find an artery that needed to be repaired through surgery. We will not know the results of the MRI until late Friday or early Saturday. Please pray for Ava tomorrow and for good results on her MRI.
The Genetics Counselors came to speak to us about DiGeorge Syndrome. They answered some of our questions and will be doing more tests on Ava when she gets out of ICU and into a regular unit. They gave us many pages of information to read of all the things that could go wrong for a child with this syndrome. We were too overwhelmed to read any of it. I know it would just cause us more stress and worries right now. This made for another emotional, exhausting day even with all of Ava's progress.
We are greatly missing our Brayden Lee and look forward to seeing him on Saturday. We are amazed at how well he is handling all of this. He's much tougher than we've ever given him credit for. He chose to go back to school today to see all of his friends. We were concerned that he would be reluctant to go back but once again Bray surprised us. He was thrilled tonight to have received a present on Jamison's birthday. Thank you so much Auntie for making him feel so special today too.
Wanted to thank Molly Brawley for her humor on her blog site. Jamie and I laughed at her checkbook balancing story. It was a much needed release as we haven't laughed out loud in almost two weeks.
We are praying for Troy Meek and family as we just found out he underwent surgery today for testicular cancer. Please keep them in your thoughts and prayers as well.
Thursday, October 11, 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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October
(28)
- Turning a corner?
- Holding Tight!
- Extubated Again!
- Happy Birthday Ava!
- Quick Update
- sick day at Ronald McDonald's
- Life's Rainbows
- One Step Forward, Two Steps Back
- U-Turn on I94
- Last post from me
- Even More to Overcome!
- The End of C-PAP - Coming Soon???
- Cherishing Every Moment!
- In Her Own Good Time!
- Short and Sweet
- Another message from me
- Ava's on Viagra! What?
- A lot to be thankful for
- Ava's update
- Brayden's note to Ava
- MRI Results
- A different note
- Another Day of Progress for Ava!
- Courage is not always big and loud, sometimes it's...
- More to the roller coaster ride!
- Big Brother Brayden
- UPDATE.....Ava is slowly getting better!
- Trying to keep this up to date
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October
(28)
8 comments:
Hi Jamie and Jamie!
First of all, it's great that Ava is doing better and getting Moms milk now! We are continuing to pray that the MRI shows that another surgery is not needed. But, if it is, remember she is a FIGHTER and will overcome any and all obstacles put in her way!
Secondly, Happy Cousins Birthday to Brayden! He was so excited to recieve a gift on Jamisons birthday I am sure he felt special as he should because he is special.
You two need to remeber that everyone is here for you in so many ways and that you can always count on us for anything you need or want. Jamie and Jamie, you are two of the most wonderful people in the world and I love you so much. So keep fighting for Ava as you are now. Please tell her that Uncle Mark and Aunt Trace love her very much, give her a kiss from both of us, and we will come visit asap.
Love you both, Tracy
Dear Jamie,
Your postings are beautiful, as only the words of an AMAZING mother could be!
Continue to hold on tightly to your family. I will send up a special prayer tomorrow at 11:00am for your baby Ava.
Lots of Love & Prayers,
Janelle
Jamie and Jamie,
We will be praying like crazy today for Ava's MRI to go well. I was so glad to see she is making such amazing progress. She must get her strength from her fantastic parents and family. Thank you for the prayers for Troy, his surgery went well. Molly's blog made me laugh too, she's great.
Take care,
April
Hi Jamie,
I found your site through Molly's... Ava is beautiful! My nephew, Corey, had 3 full blown open heart surgeries at Mott's for hypoplastic left heart syndrome. We thought we'd never get through it, but today he's a happy, healthy 8th grader at Lakeshore Middle School (ok - we'll all have to forgive him that....)and you'd never know all he's been through. More importantly, HE remembers none of it. His surgeries were at birth, 2 months, and 2 years to completly restructure his heart. BUT - he's doing great - and Ava will be a success story too. With you as her mom and all the prayers headed her way, it's already happening.
Also,(and I can say this as a mom of 2 preemies since I've had it happen to me)keep in mind doctors feel they have to tell you the absolute worst that can happen. It scares you to death, but that's the way they do it. You will get through this, Ava will come home, and life will find a new normal that's wonderful. We're praying for you, and we know you're in good hands. Take care, Pam Anton
Jamie and Jamie,
Thanks so much for the updates. We will be praying at 11 today that all will be well. She is such a fighter and I love the name sassy pants! I wonder where she gets that from?! Brayden is amazing as well.
Love,
Emilee
Oh yeah, thanks for the new pictures. I love the one of Ava and Brayden. How precious!
Jamie,
I just want to say GOD is a GOD of miracles. He has given me so many. GOD can do things man can't do.I praise GOD for Doctors, GOD uses them. My youngest son was born with one less flap that pushes the blood out. And he couldn't do what other boys could do. The specialest said at this time they could not fix it because medical science hasn't figured that out yet. He would sleep most of the time the bigger he got the more he slept. When he was 5 yrs old and in kindergarten he would just fall asleep and the teachers would just have to leave him alone till he woke up. They said he'd never play ball, ride a bike or do anything that would cause his heart to beat faster than it already did or he would pass out. We went to a camp meeting here in Arkansas and GOD totally healed him. In school he played football, baseball, played a saxaphone in the band and was one of the 5 starters on the basketball team. He is 35 yrs old now and is a fireman. He works 24 hours on and 48 hours off. He has 2 healthy boys and one healthy girl. He's 6 ft 2 in tall and breaks most of his own horses. We found out about the heart problem when he was a baby and lived with it until he was 6 yrs old. After he was healed I took him to the doctor and he listened to him for a long time because he had heard his heart before and had all his records. When he removed the heart monitor he looked puzzeled and said his heart beats as good as yours and mine. I found out about the heart problem in Michigan and when he was in his second half of kindgarten we moved to Arkansas. So GOD builds, heals and still does miracles. You have the most precious baby and we have people right here in Arkansas standing with you for a miracle. I pray peace over you in Jesus Name. Pray GOD gives you the strength to hold in there. I don't know you but we have a mutual friend who is Korrie. I check Ava's Blog almost every day for an up date. We have adopted her in our prayer family. She is so precious.
GOD be with you
Love in Christ
Gail from the Ozarks
Jamie,
I just want to say GOD is a GOD of miracles. He has given me so many. GOD can do things man can't do.I praise GOD for Doctors, GOD uses them. My youngest son was born with one less flap that pushes the blood out. And he couldn't do what other boys could do.The specialest said at this time they could not fix it because medical science hasn't figured that out yet. He would sleep most of the time the bigger he got the more he slept. When he was 5 yrs old and in kindergarten he would just fall asleep and the teachers would just have to leave him alone till he woke up. They said he'd never play ball, ride a bike or do anything that would cause his heart to beat fsater than it already did or he would pass out. We went to a camp meeting here in Arkansas and GOD totally healed him. In school he played football, baseball, played a saxaphone in the band and was one of the 5 starters on the basketball team. He is 35 yrs old now and is a fireman. He works 24 hours on and 48 hours off. He has 2 healthy boys and one healthy girl. He's 6 ft 2 in tall and breaks most of his own horses.We found out about the heart problem when he was a baby and lived with it until he was 6 yrs old. After he was healed I took him to the doctor and he listened to him for a long time because he had heard his heart before and had all his records. When he removed the heart monitor he looked puzzeled and said his heart beats as good as yours and mine. I found out about the heart problem in Michigan and when he was in his second half of kindgarten we moved to Arkansas. So GOD builds, heals and still does miracles. You have the most precious baby and we have people right here in Arkansas standing with you for a miracle. I pray peace over you in Jesus Name. Pray GOD gives you the strength to hold in there. I don't know you but we have a mutual friend who is Korrie. I check Ava's Blog almost every day for an up date. We have kinda adopted her in our prayer family. She is so precious.
GOD be with you
Love in Christ
Gail from the Ozarks
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