Ava continues to do well! She is not currently on any more sedative drips (they discontinued her Ativan today!) I am told that her xrays are looking better each morning. Her blood gases have looked good again today. These are blood tests that are run about every 4 hours or whenever needed. They show her oxygen, carbon dioxide, PH, lactate, potassium, and calcium levels. This lets them know how her body is handling being off the ventilator. They have even started to wean her oxygen pressures. It is so hard to get excited because you never know what tomorrow might bring. But so far, so good.
As you know I went home today for Brayden's Halloween party at First Presbyterian Preschool. We had fun at the party. (It's amazing to me the control that Mrs. Timm and Mrs. Phillips have of 20 three year olds! They all know the routine and everything runs so smoothly!) It was nice to get out of the hospital and focus on just Brayden for awhile. I wasn't totally relaxed, however, about being so far away from Ava. I'm sure you're totally shocked by this since I'm typically such a relaxed person, yah right. After a few reassuring calls to Ava's nurse, Cheryl, I was able to enjoy myself. Dad and Fran were also with Ava all day which made me feel better.
So all was well until it was time to say goodbye to Brayden again. These goodbyes are just killing us! I had a very emotional ride back to Ann Arbor as I thought of being away from him for three more days. I feel like I am missing out on so much with him. Like tomorrow night will be difficult because I am missing Trick-or-Treating with him. But even the bedtime stories and kisses each night. So far we've managed to find multiple copies of a few books so I can read him a bedtime story from here while he is looking at the pictures at home. That makes me feel a bit more connected at bedtime. So these are the things that I'm feeling sad and guilty about all the way back to U of M.
As soon as I walked into Ava's hospital room, however, Cheryl (Ava's outstanding nurse) pulls out the crib, slides up a rocking chair, and lets me hold Ava. I haven't done this since she was reintubated last Monday! It was wonderful! I held her for two and a half hours and she was awake the entire time. She just looked up at me with her big blue eyes! She was so content in my arms. That was EXACTLY what I needed. That little baby girl gives ME strength to get through this. Who is suppose to be taking care of who anyway? She put it all back in perspective for me. Thank God for my Ava!
On a sad note: Candais's baby, Ke'Myiah was put back on the ventilator and is back in the ICU unit again. She was having trouble on the oxygen because of a procedure she had done. My heart aches for them because I know how difficult it is to slide backwards. Please pray that Ava AND Ke'Myiah can stay strong and continue to make progress.
As always, thanks for listening and for your prayers! Please continue saying them! Kisses and hugs goodnight to both of my sweet babies!
Tuesday, October 30, 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)
7 comments:
Jamie-
What a wonderful "surprise" the nurse gave to you yesterday allowing you to hold Ava. That brought tears to my eyes.
AND--what an amazing mom you are by finding copies of Bray's books and reading them over the phone. That is the closest thing right now to having him on your lap and I am sure he looks forward to that each night.
Hang in there!!!
Love, M
Jamie -
Such great news! I'm so sorry that you can't be in two places at once, but Ava and Bray (Jamie too) know your heart is with them always!
You are such a wonderful mother.
Lots of prayers and love -
Emily
Hello
I am so glad to see that you got to hold ava, those pics are so cute. she is such a QT. She gets her looks from her mother. Seeing that pic brought tears to my eyes also. I'm so proud of, staying so strong for your daughter and son and family. You're probably getting tired of hearing this from me but I know that ya'll will get through it. I can't wait until ya'll come back home. Hope to see ya'll soon!
Love Always,
EvanMcLaughlin
Jamie,
I hope Ava continues to make progress. This site has helped me keep up with how she and the rest of you guys are doing. Your strength is amazing and from what i have been reading, Ava seems to have that same amount of strength. It is so great to hear that you were able to hold her. I will keep all of you in my Prayers.
Good morning sweet ava Christine! I can see how your mom missed you yesterday, for I was lucky enough to be there with you all day. and today-I miss you so bad!!!! I am so very happy your mom held you yesterday. For I could tell you missed her. You would look at me in my mask(I had to wear a mask for I have a cold) and I could see in your eyes, "who are you?"! but then to my amazement, you seemed to begin to know me by my voice, and when I took off my glasses, I swear, you smiled!!!!!!!!!!!! You did scare me a few times when you seemed to choke with me watching you, and I would yell for cheryl! Im a gig time worrier. Me and your mom!!!!!! llok out when you get home!But you looked even more beautiful than the last time I saw you, and do you remember what poppy did to you? He took some of that long hair of yours and moved it from your tape on your little cheek. Ouch!!!!! Boy you let him know to leave your hair alone!ha Then I gave you bangs!ha I feel so blessed to have had you to myself yesterday. I think you and I are going to be great pals! Im sure your mom will worry about that!ha You are so strong and smart Ms. ava. I know you give your mom and dad strength also. Oh yeah, you have wonderful nurses. I toast all of them. And especially to Cheryl for knowing just what your mom needed yesterday. Thank you Cheryl. Well I will go for now. For your lazy granny has done nothing today but think of you. I will check in tonight.
All our love to you
granny and poppy
Jamie--You are an amazing mom and person.
Molly
The Garvey's send their love and prayers. We are thinking of you all the time.
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