Monday, October 15, 2007

Ava's on Viagra! What?

You should of seen my husband's face when he found out a couple days ago that his little girl was taking Viagra! I wish I had a camera. Apparently this drug was originally designed to help the blood flow in cardiac patients. Of course we never heard of it for that simple reason. Our wonderful nurses explained to us that the medical staff then started to notice that all the male patients receiving the drug were getting erections. Viagra is now used more commonly for that exact function.

Ava is doing "okay". She had a rough night on C-PAP (the tiny face mask used to give her oxygen when they took her off the ventilator). This morning her levels on her blood gas looked "marginal". They were concerned about fluid that they saw/heard in her left lung. We got a page early this morning that they would probably put another chest drainage tube back into her little chest. Instead they "tapped her" which means they inserted a needle into her side and suctioned the fluid that was in her chest. They were able to remove a good amount of fluid (2 ounces) and her chest xray looked better after that. They will continue to listen for coarseness in her chest and if she continues to accumulate fluid they'll have to put a drainage tube back in. We are praying that it was only a one time occurrence.

Her blood gases improved a little after they did this because her lungs were better able to breathe. Since then the blood gases have shown no more improvements. Right now they are just "watching and waiting" (boy do we hear that phrase a lot!) They say she is "towing the line" right now and we are hoping that with time her blood gases will improve. They will try whatever they can to avoid intubation (putting her back on the ventilator). Please pray for her during this new phase of hurdles that we are trying to get her through.

Brayden is still here with us and we are trying to enjoy every minute. He has been wonderful. It's got to be pretty boring here at the hospital all day for a four year old. He will go back to Aunt Heather's with my dad and Fran tomorrow evening. Jamie may try to get home at the end of the week for a night or two if things seem to be going well. This would be wonderful for Bray to go back to his own home and sleep in his own bed. However, it will be extremely emotional for me. Jamie is my rock. He always has been, especially when things are tough. He has this way of only looking at the positive in things and usually that's what I need. While I worry about EVERYTHING, he doesn't sweat the small stuff and that attitude usually has a way of calming me. I am praying that I can be strong enough to handle all of this when he goes home or has to return to work.

Thank you to everyone that prayed for the young woman's baby that I met yesterday. Her name is Candice and her baby's name is Kemyiah. I saw her at the hospital and she had just got word that the surgery went well. Then she asked if she could talk to me in the hall. She asked if I knew where she could cash a money order since the hospital cashier was unable to. I offered to take her into town this evening to find a place that would cash it for her. I also offered her some cash which she said she didn't need. She says her mom is saving up to try to get here. I am so glad she came to me and that I have the ability to help her in some small way. There are so many people here that are touching our hearts and making us feel so fortunate for what we have. Please keep Candice and Kemyiah in your thoughts and prayers along with Ava.

Jamie would like to thank Emilee Lake for the delicious mostacolli that she brought to us this weekend! HA HA (Emilee teased us by making this wonderful meal and then she forgot to bring it!)

8 comments:

Anonymous said...

Ava's Parents,
So glad that things are starting to progress for you all! The girls were sooooooo excited that they got to visit with you on Sunday. Now what would a daddy say if his SON was put on Viagra?!? Hey, anything to help, right? I read this blog now before I read Molly's. It's such a nice way to feel in touch! Take care and enjoy your milestones!
Miss you and can't wait to meet Miss Ava!
Lori Brawley

Molly Brawley said...

Jamie--It is so good to hear from you! Your Jamie sounds just like my Jim. Thank god we have the best husbands! Although what you are going through is probably the biggest test of your life, I think the best lesson we learn is that none of us are anything without those we love. You are an inspiration to all of us, and already your journey is helping others (Candice) so take pride in that. I am also glad to be able to see you on Wednesday--don't worry if something comes up and we can't meet--I know Ava is your priority, but I hope to see you to say hello. Take care! Molly

Michelle Asmus said...

Jamie-
What a fighter your baby girl is!! Every day seems to bring a bit more progress. So glad to know that Brayden is still there with you. I can't even imagine how much you miss him when he is here.

Yes, you will be strong enough to handle "all of this" when Jamie has to leave. Over two weeks ago you told me you didn't think you would be strong enough to handle Ava's sugery or to have your family apart. You have gotten this far and now you are beginning to be a support for someone else--Candice.

I am so glad the girls got to visit. Emilee raved about how beautiful Ava is.

Always thinking of you-
Love, Michelle

Anonymous said...

Jamie and Jamie,

Ha ha on the dinner. I am sending a fresh batch tomorrow with your dad, though so I hope that makes up for it! We will see to it that Bray and Jamie have some nutritious food when they return as well. I made some soup too. I was going to pick out the peas, but it was too hard. You shouldn't be able to taste them, but if you can, you'll have to pick them out yourself! Miss Ava can't have pizza breast milk everyday!

You do amaze me Jamie. You are going through the most trying time of your life right now, and you able to take time out from your worries to ask us to pray for a stranger. That is why all of us are willing to do whatever it is for you and your family that we possibly can, because we all know that you would do it for us in a heartbeat.

I am sorry for raving about how beautiful Ava is, but everyone kept asking, so I just had to tell them like it is!

Thanks again for keeping us updated.

Love,
Emilee

Anonymous said...

Jamie,
Thank you for taking time to visit with us Sunday! It meant the world to me to see you and meet your most very precious Ava Christine!

Jamie when the time comes for Jamie to go home you will be strong and brave! You have already proven this!!! The staff at U of M will help you(they seem wonderful), and God will give you any extra strength you may need. Always look to your Hope Beads as a reminder of just how far Ava has come. I know I am no replacement for family, however please let me know if you need a listening ear or just a warm body to sit next to, and I will be there! I know you would offer the same to me.

Jamie you really moved me to tears by your request of prayer for Candace. It is amazing that you are able to offer support to someone else in this time. Please let me know if you see there is anything Candace might need. I will keep her in my prayers along with baby Ava.

Love,
Janelle

Anonymous said...

Girl Jamie,
God, I wish I could of seen my son's face when he found out Ava was on Viagra!!! This is sooo funny.
Hope to see you guys Wed.
Love, Wilma

Kelly said...

bray bray
i miss you. how is your sister today? you are being a good strong big brother. i'll pray more for ava.
love,
mac

Jamie & Jamie & Brayden,
Your love, courage, and strength are amazing. It is obvious why Ava is so strong, full of courage and beautiful. We will continue to pray daily for your little girl and all of you.~
Kelly Gaideski

xoxoxo ~Lori said...

Hi Jamie and Jamie! This is Lori Baxter and I just heard about your little girl and have been reading through the blog today. I am so sorry for all that you are going through and I will most certainly keep you and your family in my prayers.

BTW -She is such a beautiful baby!

Hoping that you will all be home soon!

Ava with Mommy & Daddy

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.

Before surgery

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

Before Surgery

After 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)