Great news. Jennifer has started a CaringBridge. The web address is...
http://www.caringbridge.org/visit/avaelaine
Will post lots and lots of pictures of the family over Thanksgiving. My family is coming in town, and I can't wait to have everyone over and cook cook and cook some more.
Check back for the pics.
Love,
Stephanie
Here is the latest from Jennifer... Pics and video! She's a superstar!
This is from the 12th...
Dear Family and Friends,
I got to hold her today. I am tearing up just thinking about it. I got to hold my precious Ava today. When I came in this morning (thanks mom for babysitting so I could stay at home with Todd and Jason), the lead ECMO specialists, Ralph, said they needed to change her bedding today. He said I could lift her off the bed while they swapped blankets and he held her cannulas in place. The cannulas are what connect her to ECMO. I've had many happy tears today! By the way, she's solid and seems to be at least 8 pounds!
We have officially started the weaning process. It started yesterday so it's been over 24 hours and Ava is tolerating it well. Her numbers have stayed steady the doctors are pleased. Her kidneys and bowels are still quiet but they seem to think they will be fine once off ECMO. Her ECMO flow is currently at 75 cc/kilo and once she gets to 30 cc/kilo she will be idle. They will clamp the cannulas to see how well she tolerates just being on the oscillator. When she passes that test (because we all know she will) they will perform surgery to de-cannulate.
I am excited, nervous and so thankful we are at this point. Team Ava is too! I will keep you updated over the weekend. Thanks to everyone for their continued prayers and support.
Much Love,
Jennifer
This was from yesterday...
Just a quick note that if you are interested you can see Ava on You Tube. I recorded a short (2 minute) video a few days ago when she was awake, alert and looking around. She wakes up intermittently during the day and night and those are our favorite times. We read, sing, tell her stories, and talk about all the fun stuff we are going to do when we get home.
Go to www.youtube.com and search ava elaine dickerson. Scroll down about 10 or so videos and you'll see her. It's my first time on you tube so please excuse if I did something wrong. And please excuse my singing - Ava does not seem to mind but you may want to turn your speakers off :)
Isn't that great!!! I love reading updates from them. Watching the video reminded me of when Kamryn was in the nicu, and just how helpless I felt. I remember me wanting to breathe for her, and endure all the pain she felt. If I could have switched places with her, I would have in a heartbeat, and I know all mothers feel that way.
The twins have a cold right now, and Kamryn's cough is pretty bad. They are both on antibiotics, and it's slowly helping. Despite their colds, they are in great moods.
Will post some pictures of the twins later this week or next.
Love,
Stephanie
Here is the latest email from Jennifer...
Hi Everyone,
Ava continues to rest and take small steps forward. She got another new ECMO machine yesterday (the 3rd now) because the old one was developing blood clots which is common. The procedure to transition to the new machine was smooth. They cover Ava completely with drapes and as the ECMO specialists were finishing up, Ava raised her right arm through the drapes which had everyone in the room smiling. It was like she was saying, "hey docs don't forget about me under here."
Todd and I enjoyed a nice evening with Ava. She had her eyes open for about an hour and we talked, sang some lullabies, and read stories to her. She follows the pictures with her eyes and is very alert. I think Goodnight Moon is her favorite book.
The doctors are back to day by day on ECMO to let her PAH resolve and lungs rest. It's been 16 days since she's been on ECMO and they are keeping her flows at full capacity until they try weaning again. Not sure when they will happen.
Ava and Todd are both asleep so I think I'll try and join them in their sweet dreams. Goodnight - will update in another few days. We send our love and thanks to everyone!
Jennifer
Also, there is a girl in my Mops group who has a friend who needs prayer as well. Her friend's name is Michelle. Her son was born on November 2nd, not anticipating any problems at all. Within 24 hours, he developed sepsis. Sepsis is a severe illness in which the bloodstream is overwhelmed by bacteria. Last night, he was being weaned off the ventilator. He was on a lung bypass. They also discovered a small bleed in his brain yesterday and are watching that. As she said, "lots of bumps in the road." She (Michelle) and Brian appreciate all prayers!
I know that I'm not the healer here, God is. But, if I can get the word out to as many people as possible, God will hear us. I just want to make it right for everyone, and I feel helpless at times. So, posting about this some how helps.
As for the twins. Well, I hate to mention them right now, as these babies fight for their lives. The girls are doing well, and are learning how to battle each other for toys. That's all I will say for now. More later.
Love,
Stephanie
Here is the latest from Jennifer. Ava still has a VERY long road ahead of her. Her body is so very fragile, and needs rest and lots of prayer. Please pray for her.
Good Morning,
Ava continues to have fairly stable days and nights. She's got a few numbers they are working on with different medications and ecmo flows to try to stabilize. Over the past few days her chest x-rays have shown her right lung (her good one) to have collapsed. It's a very fragile balance to keep it open with gentle ventilation since ecmo does her lung function for her. They have tried to wean her ecmo flow down several times but she's not tolerating it due to her collapsed lung and PAH. Currently her ecmo is set at 120 with 130 being the highest support and 30 being the lowest. We have to get that right lung opened in order to progress forward with weaning but the doctors are saying it's a very slow process. They have chest x-rays scheduled for every 12 hours but it could be several days before they show any improvement.
The plan for the weekend is to let her rest. We had a very dramatic early morning on Wednesday. Her nurse woke me up at 3:00 AM to let me know there was a leak in the roof from the rain going right on to a machine that controls her kidneys. Before I could get up off the couch the lights came on and there were 20 doctors and nurses in the room preparing for us to evacuate to another room. It took all of them to move Ava and her machines inch by inch two rooms down. Also, earlier that evening as the nurses were shifting her on the bed, she slipped down and the cannulas in her neck moved slightly making the ecmo circuit cut in and out. They recovered quickly but I think both those events really took a toll on Ava. Her numbers have fluctuated more since the move. The doctors have recommended minimal stimulation to allow her to rest and let the gentle ventilation work to open her lungs. We have a very comfortable visiting area and we love seeing everyone but visiting in Ava's room will be determined by her numbers and nurses' and/or doctors' recommendations at the time.
Ava continues to get her strength and will from your love, support and prayers. She also got her own set of pink boxing gloves from Grandpa yesterday (see picture). I'm sure as soon as we can dress her, grandpa will order pink shorts and a robe to go with the gloves. She's our little fighter!
Love,
Jennifer
Thanks everyone!!!
Love,
Stephanie
Okay, here is Hollie dressed up as an "80's Chick". I had so much fun doing her hair. It brought back soooo many memories. Her friend Rylee dressed up as 80's girls as well. They were so cute. We were invited to a Halloween party in the neighborhood, and had so much fun there. The girls all played and entered the hoola hoop contest, and costume contest. It was so much fun. Later, the parents gave the kids toilet paper to wrap the back yard. They had to clean it up later, but it was so fun and so creative. The girls had so much fun. Enjoy the pictures. The last picture is my friend's son. Isn't he adorable???
Hollie ready to go!
Hollie and Rylee ready for the party
Hollie's got to get her peace sign in some where!
Rose, Rylee and Hollie having fun!
Woody (Burke)
The babies were fast asleep in their cribs during all of this. Next year we will all be able to go out as a family and enjoy trick or treating together!
Shawn and I had the pleasure of meeting Ava yesterday. She's doing really well. She had her repair surgery and isn't swelling at all. When we saw her, she was resting comfortably. She opened her eyes for us, just enough to tell us that she knew we were there. She is BEAUTIFUL!!! My friend Allison went with us. We are in Mops together, and she is the Service Team Leader of "Tiny Hopeful Hearts". That is a group that we created to reach out to parents who currently have a newborn admitted to the NICU. We try to raise money so that we can create gift baskets that will cater to the needs of the parents. Allison was sweet enough to bring one of the gift baskets, along with a bible that she marked a few bible verses for Jennifer and Todd to look over. Before Allison left, she got us all in a circle and said the most beautiful prayer. Allison, thank you so much for coming up there with us. I know that Jennifer and Todd are so thankful for you and your warm heart. The prayer was awesome. I'm so proud to be your friend.
Ava looks great. They still don't have a timeline as to when she will be off of ECMO, but she's doing really well. She looks so good, and has a lot of color. Shawn and I left there feeling really good. Jennifer and Todd, look great too. They are tired of course, but are hanging in there. They still need our prayers and positive thoughts.
I will continue to keep everyone posted.
And when I figure out how to get pictures off of my new phone, I'll post Halloween pics as well.
Thanks,
Stephanie
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