Ava is four weeks old today! She has done very well the last few days in terms of reducing the infection and taking fluid off. They have also weaned a lot of her ventilator settings and she has tolerated that well. The U of M staff did an ECHO yesterday and the "fatty fluid" that had built up in the pocket around her lung is very little. (Remember that is why she is on Portigen formula instead of breastmilk?) It will still be at least four more weeks before she can go back to breastmilk, though. The cardiologists actually said "Ava is just having a great day" during rounds yesterday. Believe me, they are very stingy with the positive news around this place. We cherish any piece of good news we get.
So right now the plan is to let her rest for a few more days. If things continue to go well with the ventilator settings, they may start sprinting her (taking her off the ventilator for one hour at a time) tomorrow or Monday. Extubation would come next. I am very nervous about how she'll do because it's very hard to take steps backwards. Praying it goes well this time! Also praying that she not be extubated on Tuesday as I may come home for a few hours to attend Brayden's very first preschool party.
Speaking of Brayden, I took him to the ER yesterday and he has croup. They gave him a breathing treatment and a steroid to help clear his chest. He no longer has a fever but he still has a terrible barking cough. His little voice is also very quiet and raspy. He has no appetite and only has spurts of energy. We are keeping him at Ronald McDonald house and trying to get him to rest as much as possible. I hope he is feeling better by Sunday evening when he and Jamie attempt to go home again!
Brayden wants me to say that he loves Ava. He misses seeing her but looks at her pictures on this blog often.
Another tribute to Ava's nurse Cheryl: She read in our blog that Brayden was sick so she showed up yesterday with three DVDs from her kids' collection for us to borrow. She also showed me a very hopeful video online. It was on YouTube under "Hearts of Hope" if anyone wants to see it. It shows kids with congenital heart defects that have survived surgeries and are now living life to its fullest. We see so much pain and devestation from suffering families at the hospital. It was nice to see the children that have overcome the obstacles. Cheryl knows that we need to hang onto every ounce of hope that Ava will make it through this. Thank you so much Cheryl, we feel blessed to have you caring for our daughter.
Candais and her baby may get to go home next week. HOORAY! Thank you for all of your prayers. Jason Steven had laproscopic surgery on his gallbladder this week. He developed an infection but should be home from the hospital by now. We are thinking of you, Jason and hope that you are healing nicely. Praying for Troy Meek and family as they go for a consultation at IU on Friday. Your family is in our hearts during this difficult time.
Saturday, October 27, 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)
10 comments:
Good morning our sweet Ava. I am so gosh darn happy that you are doing better today. I pray for you all of the time. Im becomming a granny that is obcessed!(spelling?) I was a good speller! anyway, Please tell your big brother we love him and to get better also!!!! I think I have brothers cold right now. But its worth it if its his!ha Your poppy and I are comming to be you on Tuesday. I cant wait! We will have you all to ourselves! Im going to read to you and sing and just hold your little fingers all day. You should be seeing your aunt and uncle and cousins soon today. Give them my love also. They adore you ava Christine. I believe you are one lucky cookie!!!!!!!!!Jamie, it is not Karen Garvey this is posting. I talked to Dave this morning, he sends his love, but Karen is not doing well enough to type. But they do pay attention to the blog on ava. May God be with all of you and give you lots of strength. I will check in later as normal. Sweet thoughts and dreams Ms. Ava!
all our love
granny and poppy
Jamie, jamie and Bray, have a nice weekend with your family!!!!
jamie, the new pictures are so sweet. Ava's such a beautiful little baby. Beautiful baby for a beautiful family!!! And get some rest while heather's there, you know if you and jamie can't be by ava's side...heather's the next best person. Praying for more good days, erin
So glad your little Ava is doing well. Love all the pictures!! Feel better soon Brayden. No need for Jamie to proofread, we want him as he is:-) Love and Prayers are with you all, as always, xox
Happy b-day, Ava!! We were just saying this morning that the best b-day gift you and she could get would be some good news...so glad you've received some! The new photos you've posted are truly inspirational; it may sound corny, but I feel like I can sense Ava's strength and beautiful spirit in those pictures. Also, your presence in your new friend Candais' life is clearly such a blessing...I'm now praying for her story to have a happy ending, too! We would LOVE to see you and Brayden Tues. at the preschool - not having you there has felt lonely...feel better, Brayden! Love and best wishes, Gretchen
Happy Birthday Ava Christine!!! Ava has accomplished more in her four weeks than many of us in one lifetime. She has fought through countless treatments, brought out the best in a beautiful family, and truly connected an entire community. Ava we love you, thanks for being an inspiration to us all!
Love,
Janelle
Good night Ava, Bray, Jamie and Jamie and rest of the Zimmerman clan that I love. Sweet dreams to all of you. Have a wonderful peaceful night ava. Know that we all loove you and give you strength each day. Tell Bray I cant wait to schnuggle and Jamison Lee that we love them. Good night Ava
granny and poppy
Sun.28th Good morning ava and rest of crew!!! I am thinking ava had a good night. I pray so. I meant to tell you, Jamie, that I sent Mary Poppins for all of you to watch in hotel. It is a great lighthearted,happy, fun movie for all to interact together. I could just see Weaver/Zimmerman clan laughing and crying at same time, but in happy moments. Maybe next weekend you can see. I love the movie and Shane and Laura did too. Watching that movie when they were little gave us fun. Anyway, your dad and I might come up Monday night. So let us know if you can, that we are to be there for sure,ok?Hang in there, Jamie. Your dad loves you and he is so worried about you.
Ava, I will write you agagin later. Have a great day little cookie!!!
love always
granny and poppy
Happy Birthday Ava! Thanks for posting the new pictures guys!
Love,
Beth Altergott
Good morning(Monday29th) sweet little Ava. I havent heard how you are doing as of yet, so I am thinking that is a good thing. I cant wait to see you again. I think Poppy and I are coming up tomorrow. I do have a cold still, so I have to check with your mom. All of my side of family has sent love and prayers to you. I know you have to be the most loved little girl ever!!! Just keep on being a fighter little Ava. I will check on you later today.
all our love
granny and Poppy
Bray and I miss you sweet baby girl!!! You too mommy!!!
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