Okay so I'm feeling a little better about the "floor". I called several times last night and besides Ava being "a bit fussy" she did fine over night. Her feedings are now worked out (knock on wood) and she still hasn't vomited since yesterday morning. So today things went pretty well. We started oral feeding her again today. We are starting with only 20 ccs three times a day and then we are putting the rest down her NG feeding tube. She gets 65 ccs of breastmilk every three hours and it's fortified with 30 extra calories from powdered formula that we add to it. She tolerated her bottle feeds well today.
I was also told that we can start taking Ava off of some of her monitors (heart rate, respiratory rate, and oxygen level) for periods of time so I can walk around the floor with her. She is on one continuous flush that is connected to her IV PICC line so that it doesn't clot. This is where they draw blood and replace electrolytes as needed without having to poke Ava with a needle each time. This monitor has to stay connected all the time and has to come with us when we leave the room. There is a play area on our floor that Brayden loves to go to. He was so excited when I told him that Ava can walk down there with us this weekend too. He just kept giggling on the phone. It will be so nice to have a little freedom and change of scenery with Ava once in a while.
Ava was given a hearing test today which she passed with flying colors. She will need to be seen by an audiologist (spelling?) every six months until she's five years old because she could be at risk for hearing loss over the next few years. They will watch her more closely because of the amount of time that she was on the ventilator and because she has Di George Syndrome. But so far, so good.
Wanted to thank Jenny for continuously coming to see me during the week. It gives me something to look forward to and makes me feel not so alone here. Thank you Wilma and Heather for keeping my boys fed again this week. I appreciate it so much. Thank you Kristina for your kind words and advice. You have been added to my daily prayer list as well. Thank you Linda Timm for the festive new books you sent this week. I had to read one of the Christmas books to Brayden twice over the phone tonight because he enjoyed it so much. To my dear, sick husband (Jamie went to the doctor today and has strep throat) thank you for all that you are doing to hold down the fort at home. It isn't easy for any of us and I know Bray has been extremely difficult for you lately. You are an awesome Dad. Continue to be patient with Bray as he tests your limits. I love you so very much!
Praying for several of the sick babies here tonight. In addition to Ava, please say a little prayer for MiMi Rose, Rhyer, Maddie, and Anna as well. Molly Brawley and Troy Meek, please know that you are in my daily prayers as well. Thank you, Lord for a better day and the strength to get through it!
Thursday, December 6, 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)
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7 comments:
Wow, i actually beat fran this morning...she must be sleeping in.
Anyway, jamie i'm so happy for all the positive updates. Your going to be back home before you even know it. Keep your strength up and especially...keep your spirit strong!!! love ya, erin
Jamie -
What wonderful news! Who knew that a change of scenery could do so much good! Bray will be so happy that Ava can "visit" the play area with him! Keep strong and keep praying, as we all are everyday. You will all be home together again soon!
Ginger
Jamie -
Like mother, like daughter - you will get even more used to the floor 'in your own time, slow and steady progress'! :) I'm glad you've found some comfort!
Enjoy your walks - you will get to show off your beautiful little girl. It is great to hear how well Ava is doing and you too!
Lots of love and prayers - Emily
Good morning Ms. Ava! What good news from your mom this morning!!! I feel so much better with her words today. Last night I went to bed sad. Little Ava, tell my dear friend Erin that I didnt get to sleep in, Wolverine is here and I could not check the computer quick enough!ha What fun you will have walking with your mom and watching your big brother play! We are all saying prayers all the time and I know you will be home soon. 2008 will be a wonderful new year, it has to be! I will check in again later, I love you and keep up the good work little one!
granny and poppy
Hey guys!
Sorry I haven't posted lately. I have been so so so busy. I'm still prayin' 4 ya'll. All the time. Ava is so cute! I love the hair!lol! I just wanted to say hey. Alrighty, I love ya'll! God bless!
Love always,
Evan McLaughlin
Jame--As I was reading your blog today I realized yet another reason I know Ava is going to be getting stronger and getting home soon...she has a mom who is intelligent, who listens, who articulates, who loves, and who cares for others. I know you sometimes wonder why this has to happen but with your simple explanation about things, your honesty, and your willingness to share with others, I am 100 percent sure that you are already helping other mothers with your knowledge and modeling of how to cope with fragile babies. Your wisdom and other positive attributes WILL get you through this, and as I said, you will help many others in the process. Sleep well tonight Jamie, your babies are in good hands.
Molly
Good night Ava and jamie. Both of you have good dreams and sleep tight. I know you both will be hoping for lots of prayers, which you have, and both of you will be thinking about each other. All will be well tonight. Sleep tight and know your family and friends are here and praying all the time. One thing I must say little Ava-you are so LUCKY to have your Aunt Heather christine(whom you are named after) helping, loving, and looking after you and your mom. Not too many little girls and sisters have someone like that to love them so much. Both of you girls are so fortunate to have Heather. she is a wonderful mother, aunt and sister and a great step daughter.
good night with lots of love
granny and poppy
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