Kamryn Hope's Blog

Kamryn is home!

2011-11-14T10:05:00.003-06:00

Just a quick note to let all of you know Kamryn was released from the hospital last night. She did well at home eating a good dinner and she slept most of the night. She is also walking much more and talking quite a bit so she is definitely feeling better. Stef will have more to post later today, but we wanted to get word out about her coming home.

Thanks to all of you again for the support, thoughts, and prayers! We are so relieved right now that words just can't fully describe.

Shawn and Stef

Quick update

2011-11-13T11:09:00.001-06:00

Kamryn is making great progress this weekend! She is up and walking and actually hates being in her bed now. She is starting to smile and laugh like her old self and she is drinking and eating a little more each day. They just took her IV out so she is now only connected to her monitor for basic vitals. We basically have the monitor turned off for most of the day so she will likely be disconnected from everything later today.

The best news of all is that there is a slight chance we can take her home today. The decision will be based on how much she can eat for lunch. She hasn't had many solids over the past couple of days so this will be a big test. Looks like we will get a grilled cheese sandwich for the test. If she isn't able to leave today, I am very certain it will be tomorrow!

We are incredibly encouraged by her progress and know her recovery has been helped by all of your thoughts, prayers, and visits over the past few days! We continue to be amazed and thankful at the incredible circle of family and friends that surrounds us. We honestly don't have any idea how we could have made it through any of these difficult times without all of you!!

We will try to update everyone tonight or early tomorrow.

Shawn and Stef

Post Surgery Day 2

2011-11-10T20:39:00.030-06:00

So sorry we are just now updating. It's been a long day with sweet Kamryn. The cell phone connection up here is not good so transferring pictures is difficult at best. I have so much to tell you.

Kamryn is doing great. Yesterday, I got to hold her 3 different times, and she fell asleep every time. If you know Kamryn, she is NOT the snuggle type, so I will take them when I can get them. When her meds start to wear off, she gets very agitated and doesn't like to be touched. Yesterday, she had a couple sips of apple juice. I tried to give her some jello, but she wouldn't eat it. Last night, we got her out of bed to walk, but she wouldn't take a single step. She would just stand there, and cry. Broke my heart. She finally stopped crying, and we tried to get her to walk to her "monkey", and even toys, but we couldn't fool her. She just kept saying no.

She is still on supplemental oxygen and sleeping most of the time. We are going to try walking again today. One of the doctors mentioned carrying her in a wagon to the front of the playroom, and maybe that will persuade her to get up and forget about her environment for a little bit. We are going to try to feed her some solids today as well. The sooner she is able to eat, the sooner she will poop and we can go home.

We had a lot of visitors yesterday and we continue to be blessed with support. We had friends, Parkland NICU nurses, and two of her primary NICU nurses up to visit.

We were also visited visited by Jennifer who is Ava Elaine's mommy. She surprised us with an amazing gift she has been working on for CDH. Jennifer worked with CHERUBS to donate an information kit for parents who are dealing with CDH. The kit was donated to Parkland in honor of Kamryn and we will be giving it to the fetal program this week. This would have been a fantastic help for us when we first found out and we are sure many future CDH families will benefit. Here is a picture of the kit:

Jennifer also told us that she is expecting. I had tears of joy in my eyes when she told me. She is 13 weeks, and is doing great. So far, sonos show that the baby is developing just fine, and it appears that her heart is in the correct place. Congratulations Jennifer! We love you!
Kamryn is doing very well overall and hopefully we will be out of here in a few days. Kamryn isn't very happy with the view out of her window..... Yes that is the heating and AC unit she gets to look at each day.

Kamryn is definitely heading in the right direction and all is well here. We continue to be amazed at the support we are receiving and just can't thank all of you enough for the gifts, messages, and love each day (and Peter and Cinnamon's house which has been Hollie's new home for the past few days)! All of you are simply amazing!
More to come tomorrow!

Surgery Update

2011-11-09T15:18:00.024-06:00

Surgery was successful and Kamryn is sleeping peacefully right now! It has been a pretty anxious day but Stef and I are feeling much better having the scariest part behind us.

The surgery started around 8:00am this morning and lasted about 2.5 hours. After talking to the surgeon, it appears the original patch she received 2 years ago had mostly dissolved. Her original patch wasn't goretex, but another material that was supposed to encourage scar and new tissue to basically grow over it. Once that happens, it wouldn't be an issue when it dissolved. Clearly, that growth did not happen and when it finally dissolved, it left a hole for her intestines to move through. This time we used a goretex patch that was left intentionally longer and wider than the hole so that it can grow with her as she gets bigger. The hope is that we won't need to do this again but there are no guarantees.

Everything went very well with only one notable issue. Kamryn's spleen isn't in the correct location. This doesn't cause an issue as far as function but it is located in the front instead of in the back. This means that it isn't protected by anything. We have to be mindful of this as she grows because if she gets an impact to the stomach she could rupture her spleen. For those of you that have spent any time with Kamryn, you know she is our fearless child who is always testing her physical limits. Doctor said we might need to look at enrolling her into the chess club instead of football which won't sit well with Kamryn.

Kamryn did have a small issue with keeping her oxygen saturation up without supplemental oxygen. It would dip into the 80's (like this to be 94 to 100) without aid so she is still on oxygen. I think this should be resolved by tomorrow. She also hasn't been able to pee so we are getting a little concerned. They have given her lasicks meds to try and fix that problem. We will see how that works out. Option B is a catheter which we would like to avoid.

We had a lot of visitors up here today which has been great and so meaningful to us during this incredibly scary time. The visits today and messages on our blog, facebook, email, and text really gave us the strength to get through all of this. Stef and I just can't believe how incredibly lucky we are to have the family and friends we have. All of you are nothing short of amazing and we appreciate your kindness, generosity, and support more than you will ever know!

Kamryn getting ready for surgery:

Kamryn going to surgery:

Hollie taking care of Kamryn:

Resting comfortably:

Thank you for all of your thoughts and prayers over the past few days. It worked and our little warrior princess is doing remarkably well!

Shawn and Stef

Reherniation

2011-11-07T18:12:00.006-06:00

Like so many others, we never thought we would be posting this update. We found out yesterday that Kamryn has in fact reherniated. We are definitely still in shock because as each day has passed we gained more confidence that this condition was behind us. After two and a half years you really can get a false sense of security.

During Kamryn's initial repair surgery, a patch was used to close the hole in her diaphragm. The thought was that her own tissue would have surrounded the patch and permanently sealed the hole. This didn't happen and we are finding out it isn't completely uncommon to reherniate like this.

As of today you really wouldn't know anything was wrong. She doesn't have any signs of an issue with the exception of a cough (which is what prompted us to take her in). This could have been going on for some time now.

Here is a pretty clear picture of the problem. You can see the intestines are clearly in the wrong place in her left chest cavity.

Right now we are scheduled for surgery at Children's Medical Center in Dallas on Wednesday morning. They anticipate her stay to be 3 to 6 days depending on how long it takes for her intestines to wake up afterwards.

Thank you for all of the support and encouragement over the past couple of days. Our family and friends have once again dropped everything to come to our rescue. We are truly blessed and thankful to have you all in our lives. We are also in the most incredibly capable hands with Dr. Megison and the entire Children's team! We are ready for round #2.

Here are a couple of pictures taken today in the hospital.

Shawn and Stephanie

Brooke and Kamryn are TWO!!!

2011-06-19T13:00:00.020-05:00

Can you believe it??? Brooke and Kamryn turned 2 on Friday. We were on vacation in the Hill Country, so they spent their birthday having lunch with friends and family, and then driving back home. It was a long day, but we had a good time.

I have a TON of pictures to post. These first ones were taken for Father's Day gifts...

Hollie had an End of School slumber party a few weeks ago. We started out with a group of her friends at our beach club swimming pool, then back to our house for pizza and a sleep over. She ended up getting sick with a double ear infection that night, and the next morning. So she wasn't her usual chipper self. But, she and her friends still had a good time!

At the beach

Just after a silly string fight in the back yard.

Settling down for the night and watching the Justin Bieber movie.

So, we just got back from vacation. We went to the Hill Country with two other families and just had a nice relaxing time. It was a little difficult with the twins, just because they aren't quite at the independent age yet. But, they are so close. We stayed in this huge house that had 5 bedrooms, 5 1/2 bathrooms and two kitchens. We were on the San Saba River with a view that was just beautiful. The river was quite low, b/c they are going through one of the biggest droughts in years. But, we were still able to go down to it and explore. The house had a beautiful wrap around porch that was perfect for drinking coffee on in the mornings. The afternoons were super hot, but the girls spent all day in the pool cooling off. Here are a few pics.

This was our first full day. The guys were golfing, so the moms took the kids down to the river. Brooke didn't want ANY part in it, and Kamryn wanted to be let loose. She just wanted to GO!

Our house from the river...

Kamryn the adventurous one...

B and K scoping out their options.

This is how Hollie, Rylee and Shaye spent the majority of their vacation...

Hollie and Kamryn. Kamryn LOVED the pool. She didn't want to get out. When I would sit her on the edge, she would lunge forward into my arms. FEARLESS!

Hollie Rylee and Shaye after a long day of swimming...

Hollie

Hollie Rylee and Shaye (it took several tries to get this one)

There were some pretty odd looking creatures out there. We called this one a cross between a spider, wasp and a scorpion. This is the country after all...

We had smores on the back porch the second to last night!

Our last day, we went into town to eat and go shopping.

The last night we were there, the owner took us for a "tour" of the wild game they keep there on the ranch. All the kids loaded up in the back of the truck (Brooke and Kamryn were with Shawn in my car following).

Our last night after the tour, Hollie got a hold of my camera!

I hope these pictures make up for me not taking the time out to keep up with the blog. It's been a really busy last couple of months with TAKS, school ending, summer camps and summer vacation. I'm hoping to relax a little this week.

Brooke and Kamryn are doing awesome. They are talking a bunch. They LOVE The Wiggles. They call them either the Biggles or the Giggles. When you sneeze, they both say, "Bess You". They love going outside, coloring on the sidewalk, and playing in their new car and tricycle that they got for their birthday.

Hollie is doing great too. She's already been to two camps. And has at least two more to go. I'm going to try to get her in a few more, just to keep her busy and active. Can't believe she's going into 4th grade. She had just finished 1st grade when the twins were born. Time is flying by!!!

Much love to you all!

Stephanie

Bluebonnet Pics

2011-04-06T11:49:00.005-05:00

Oh I can't believe that a whole month has gone by without posting a thing. The twins and Hollie have me so busy right now. I'm so sorry!!! Brooke and Kamryn are truly busy trying to learn every word in the English Dictionary. I think the "Terrible Twos" have started, because their favorite word right now is "NO". Although, when one of them sneezes, the other is sure to say, "Bess Ooo". They are quick to tell me "All Done" when they have finished eating in their high chairs. And, although they have nicknamed Hollie as "Lala", they have learned to say Hollie.

Here are some pictures that I took of the girls yesterday. Kamryn wasn't having any of it. She kept telling me "no" when I asked her to sit next to Brooke.

That's really all for now. We are planning our first family vacation since we have had the twins. I can't wait!!!

More soon... Promise!

Stephanie

Playdate with Kamryn's nurse

2011-02-25T13:12:00.003-06:00

This morning, I met one of Kamryn's primary nurses at the mall for a mini playdate. Oh, it was so much fun seeing her. The last time we saw her was on Brooke and Kamryn's 1st birthday, when we took them up to the nicu for our 1st annual visit. That was last June. Oh, how time flies. It was like Kamryn knew exactly who she was. She usually is shy in a strange setting, and sticks to me, but with Traci, she was so comfortable with her.

It was so wonderful seeing you Traci. You look great and Brooke and Kamryn LOVED seeing you too.

Update on Brooke... We had ECI come out to the house to see if she needs speech therapy. The week they came out to the house, was the week Brooke started talking more and more. She's about even, if not farther ahead than Kamryn with her words. She's still a few months behind with her communication and some cognitive developments, but she's quickly moving along.

They both love to color, but I think they love to put the crayons in their mouth more. But, the artwork that they are creating for me are priceless.

They are 20 months now. So hard to believe that they are almost 2. They are trying to talk in sentences. Go bye-bye, go nite-nite, and Kamryn's favorite... "getta getta take a bath?" So fun!!!

That's about it. I'm looking forward to Easter. It should be interesting to see how they do with the Easter Baskets and finding eggs.

Much love to all,
Stephanie

Meet Maddox

2011-01-20T12:03:00.003-06:00

We have been in touch with another sweet family who is expecting a sweet boy named Maddox. Maddox has LCDH, and his entire liver is up. The doctors are telling her that he doesn't have the left side of his diaphram, and his lungs are severly underdeveloped. This family is from the Dallas area, and will be delivering at Parkland, the same hospital Kamryn and Brooke were born in. Jenny is wanting to talk to as many people who have been through this situation, especially if their baby's liver was up. She is 29 weeks along, and like us all, is living in shock and fear. If you would like to talk to Maddox's mom, Jenny, please email me at studdard2@gmail.com and I will put you in touch with her. She's a sweetheart, but she's so scared. We all know that CDH is different for every baby, whether the liver is up or down. Please pray for this family, Jenny, her husband Tawa and their sweet baby boy Maddox.

Stephanie

Happy New Year!!!

2011-01-03T12:11:00.014-06:00

What a wonderful Christmas break we have had. I thought long and hard about how fortunate we truly are. Watching the twins and Hollie over the break, and how much they have grown in a year showed me that I'm so blessed. There isn't a day that goes by that I don't thank God for my family.

Christmas came and went so fast. Everyone came to our house, which was so nice. We were able to keep the twins on their schedule, which was so incredibly helpful. First, Shawn's mom came over and we opened a few presents. Hollie got to open ALL of her presents from us and Santa. Below is a picture of her opening up her big surprise. I bought her a jewelry box, and when she opened up the lid to it, there was a sign that I made that said, "Do you want to go get your ears pierced? TOMORROW???" She was so surprised.

Then, Shawn's aunt, uncle and grandmother came over. We had BBQ catered from Dickies BBQ, which was absolutely fabulous. Thank you Ann, for arranging everyting and helping to put it all together. I think we pulled it off successfully. We missed having Shayne (Shawn's brother), Barbi and their kiddos over. They were sick, and were unable to make it. Here are a few pictures...

Afterwards, my mom and Joe came in and we celebrated Christmas that night. It was so calm and relaxing. Of course, I was pooped and completely forgot to get my camera out to take pictures, but we had such a nice time. The next day, we all went to the mall to get Hollie's ears pierced. She was nervous and excited. Her friend Rylee met us up there for support. Below are pictures...

Then, Candice (Jackson's Mom) came in on Tuesday with her son Ty to visit. They got in late Tuesday night. Wednesday, I hired a baby sitter to watch the twins, while we took her son and Hollie shopping with us. We had a wonderful time. She bought the twins the most adorable bows. These are two of the hats. Oh so cute...

Candice, I loved our visit. You are an amazing friend and have been through so much. I had so much fun talking and laughing with you. I look forward to our next visit. Thank you so much for the adorable bows. They are so darn cute. I will send you pictures of them wearing the others that you got them.

Next up was New Years. We had a few people over for games, chili and good fun!!! The girls played games, while the guys watched football. Here is a picture of the girls. We had a blast. From left to right, Angel, Cinnamon, me, Leah and Amanda.

As you all know, Hollie's birthday is on January 2nd. We had a fun day filled with lots of activities that she wanted to do. First up, was lunch at Subway (her fave), she's still easy that way! Then, we got our nails done. Actually, it was a milk and honey manicure. We could have stayed there for hours. It was fun and relaxing. It was what we both needed!!! Then, we went back home to pick up Shawn and the twins. Hollie wanted to go eat yogurt at the new yogurt bar down the street. The twins weren't too sure about it, and didn't have much fun, but Hollie loved it. She loved making her own bowl and adding her own toppings. Afterwards, we went home for a brief break, and then went to dinner to celebrate. Below are pictures from dinner.

I hope you all have a very Happy New Year!!! 2011 is going to be an awesome year! I just know it!

Love,
Stephanie

18 months with pics

2010-12-21T11:22:00.004-06:00

Hi everyone. The twins are now 18 months old. It's hard to believe. I took them to the doctor yesterday for their check up, and they are doing great. Brooke is measuring off the chart for height and weight. Her doctor said she would be about 5'9" when she is an adult. That's how tall I am, so I'm pleased as punch. Kamryn is measuring just above average for height and weight, and will be about 5'5" when she is an adult. Brooke has a little cyst on the inside of her thigh that isn't going away, and will have to be surgically removed. But, it's nothing alarming and we will wait until the beginning of the year to do so. Her speech is a little delayed and we are also going to have her see a therapist in the beginning of the year as well. I'm not concerned. She's trying hard to say the words, she just can't put 2 and 2 together quite yet. Kamryn is THRIVING with her talking!!! She can say dog, cat, mama, dada, this, that, mine (her favorite), duck and more. She's just so sweet. She hates to snuggle with us, but the day that Ava passed away, it was like she knew. She woke up early from her nap the next day, and allowed me to rock her and hold her close and tell her how thankful I am for her.

This past weekend, I went to Austin to visit my mom, step dad and grandparents. Saturday morning, I was feeding the twins breakfast, and I looked over my shoulder, and the twins were holding hands in their highchairs. I took a picture in my mind (camera was too far away), and thought to myself, this is what it's all about. They are bonding more and more every day, and I don't think they realize how good they have it, having a sister their own age.

We went to visit my grandparents in the nursing home. My grandmother kept asking me if they were twins. I kept reminding her that they are. Then, I brought to her attention, Kamryn's curls in the back of her head. When my mom was 11 months old, my grandmother gave my mom a perm to get the curls she so desperately wanted. I couldn't imagine putting all those chemicals on a babies head??? My grandmother kept asking me if I put a curling iron to Kamryn's hair. I just laughed and told her no. Kamo got those curls from Shawn's side of the family. His dad had really curly hair. He desperately wanted straight hair, and I have a feeling that Kamryn will too. We always want what we can't have. We have to learn to be thankful for what we are given though.

On Sunday, we all went over to my friends house to take pictures. I've known my friend Diana, since we were in 1st grade. She is an artist and professional photographer and VERY TALENTED. Here are a few pictures she took... She has a gift of capturing moments!!! You can see more pictures of the girls on her blog... http://www.dianamlottphotography.com/blog/. She is just amazing at what she does.

Aren't they cute??? Even in my most stressful days, and with the recent passing of Ava Elaine, I don't take my daughters for granted. When I go to kiss them and feel their breath on my skin, I think how very blessed and thankful I am to be able to feel that. I'm so grateful that I can see them smile and even kiss away their tears. I know how lucky I am to be able to hear their cries and fussing.

I want to wish you all a very Happy Holiday Season!!!

Love,
Stephanie

Sweet Ava

2010-12-07T21:31:00.005-06:00

It is with a sad and heavy heart that I let you know that Ava passed away this afternoon. Jennifer texted me tonight around 9pm, to let me know. Ava was an incredible fighter and gave it her all. She gave us all so much inspiration and drive in our own lives. We are just in shock over this sad news. Jennifer and Todd are strong and loving parents who have been through so much. Please, pray for them as they cope with the loss of their precious daughter.

Love,

Stephanie

News about Ava

2010-11-22T13:55:00.003-06:00

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

Ava Update with video

2010-11-16T16:18:00.003-06:00

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

Ava and more...

2010-11-10T10:38:00.002-06:00

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

Ava still needs our prayers.

2010-11-05T11:03:00.002-05:00

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

Halloween Pics (late)

2010-11-04T08:15:00.005-05:00

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!

We met Ava

2010-11-01T10:19:00.003-05:00

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

Ava is out of surgery!

2010-10-29T18:02:00.001-05:00

Here is the very latest! God is good.

Family and Friends,

The nurses came through the door with smiles on their face. They are sewing Ava's little tummy up now and we should be talking to the surgeons soon to learn the details of the procedure. Many thanks to everyone for all of your support.

OK surgeons just left - they said the surgery went exceptionally well. All of her organs were moved down and her diaphragm was repaired with the patch. There's not enough room in her tummy for her newly placed organs so there's another patch at the wound sight. That patch will be removed later once her skin stretches. Team Ava will watch her recovery hour by hour for the next several days. She will remain on ECMO to help in recovery and we really do not know for how long. Could be days to several more weeks.

There is still a long road ahead for recovery. There are risks and many potential complications. But now Ava can come out of her corner of the ring and really start fighting.

I will send a weekend update Saturday or Sunday with her progress.

Love,

Jennifer and Todd

Ava Update

2010-10-29T10:18:00.002-05:00

I just learned that Ava's left lung has quadrupled in size from Tuesday. This is HUGE and shows awesome progress. What a fighter this sweet little one is. All of your prayers are helping this family. I know they are so thankful. Here is Jennifer's latest email below.

The 6:00 PM brain sonogram showed very little growth which Dr Thomas said could be expected since we did not start the drug to slow down the bleeding until 2:00 PM. He was relieved and so were we. Another sono will be done at 6:00 AM. If it shows no progression of bleeding then that should open a window of opportunity for surgery. Surgery could be done as early as tomorrow mid-morning. Ava will ultimately decide when it's time. She's resting very peacefully now and has continued to amaze us with her will to fight these battles. Six days old and she's preparing for her 2nd surgery. No one will ever have to remind me we have a miracle child. And I don't know how we will ever thank all the people who have touched our lives with love, support and prayer.

I will send another update as soon as possible.

Love,
Jennifer

New Ava Update - She needs your prayers!

2010-10-28T16:32:00.001-05:00

This is an email from Jennifer received a few hours ago. Please send your prayers!!!

Ava is keeping the doctors busy. The blood clot in her abdomen had decreased in size on two sonograms yesterday. We were hopeful that the medicine administered to break it up (TPA) was working. In the middle of the night the clot broke off a small piece and lodged somewhere in her right leg, knee area. Her foot was losing circulation and was cold and white. We prayed, mom had her talk with Ava, and we waited. Miraculously, the blood clot was gone at the 6:00 AM sono and her little right foot was warm, pink, and moving around.

The plan for the day was to rest, get her blood levels corrected, and prepare for surgery in the next 2-5 days. Then we were delivered the results from a brain sono done around noon today. Ava has a 6mm spot on her brain that's bleeding. Bleeding is a risk of being on ECMO because they have to use blood thinners to circulate the blood in and out of the ECMO circuit. It also could have been from the TPA clot buster medication but that was a life threatening issue yesterday so it had to be done. Her doctor immediately administered a drug that can slow down and/or stop bleeding in the brain. We won't know until results come back from another brain sono at 6:00 PM tonight. We need another miracle from above to work with Ava's strength, the medicine, and the doctor's knowledge to get her through this next battle. She HAS to make it through this so she can have her repair surgery. She HAS to get to point of the beginning of her recovery.

If the bleeding progresses she will have to come off ECMO, as early as tonight, so she can stop taking the blood thinners. If she comes off ECMO she will have to survive on her current lung capacity. We did get good news that her lungs and heart have seemed to reacted positively to this rest provided by ECMO.

Please continue to pray for baby Ava. It's working and we appreciate it.

Love,
Jennifer

Ava - No surgery today!

2010-10-27T11:58:00.002-05:00

I'm just going to cut and paste her emails that I'm getting and put them in the blog. Here is the latest! Please pray!!!

"Let me introduce you to the rollercoaster we are on. About 45 minutes before surgery, Ava's little legs started losing color and they found a blood clot in her lower abdomen/aorta area. This is an immediate threat and has to be fixed before surgery is performed. They are in the process of administrating a drug to break up the clot which will delay the surgery for at least 24 hours. Good news is she's stable and will be able to rest until the doctors clear her for surgery.

God is watching over her. If this would have happened during surgery it would have added risk and complications. Will send more updates soon.

Love - Jennifer"

Ava Update

2010-10-27T07:19:00.002-05:00

Hi everyone. Ava has been placed on ECMO, as of Sunday. She's responding well, and will have her repair surgery today at 10am. Below is an email from Jennifer...

"Hello,

Todd and I had lengthy discussions today with Ava's lead surgeon, Dr Chen, about the details of her hernia repair. She is strong enough for surgery now which allows her to stay on ECMO post surgery to recover. Team Ava will begin to operate at 10:00 AM tomorrow (well technically today) which will mark the beginning of her recovery from this condition. She will have an incision on her lower left abdomen and they will pull her liver, bowels, stomach, and spleen back down under her diaphragm. If the hole is too big to repair with the just the muscle they will stitch a patch made of an organic material called Permacol to complete her diaphragm. Permacol will allow scar tissue to form and grow with Ava. Her room will be converted into the operating room and the surgery should take about 2 hours.

Ava is responding remarkably to ECMO. She was responding to us today by lifting her arm, wiggling her feet (so cute!) and opening her eyes to look around. I think these are all signs from Ava letting us know she's ready for surgery.

We are so moved by the amount of love and support we've received over the past few weeks. We have otherwise strangers calling, visiting us at the hospital, and emailing us to show their support for Ava. All of your prayers, love and support for Ava will get her through surgery and recovery. Thanks to each one of you; we truly appreciate you reaching out and spreading the love for Ava.

Love,
Jennifer and Todd"

Everyone, please say a special prayer today at 10am for Ava that she does well during her surgery. Please also pray for the doctors and nurses that will be working on her. Pray for strength, courage and hope for her parents, and Ava as well.

Love,
Stephanie

Pumpkin Patch Pics

2010-10-24T11:41:00.004-05:00

Okay, so here are the pumpkin pictures. We had so much fun. When we walked in, they gave us 3 cups of food to feed the animals.

Brooke would have nothing to do with it. In the picture below we were trying to feed the sheep, and she got pretty scared.

Here's Hollie showing her sisters how to do it. She's a pro!

Brooke and Daddy

Kamryn, on the other hand, wanted to feed the animals, pet the animals, and probably would have gone in the pin with the animals if we would have let her. She had NO FEAR when it came to feeding them. She would get so excited if they walked by her or even moved. It was so cute to watch.

Daddy, Brooke and Hollie!

Daddy and the twins!

Kamryn!

Brooke was very serious the whole time we were there. She loved walking around the pumpkins and exploring.

Hollie helping Kamryn feed the goats!

See what I mean? She would hold on to the fence, and start bouncing up and down, with the biggest smile on her face. She loved the Longhorn. But, don't get any ideas Longhorn fans... Kamryn's going to be a Red Raider!!!

Mommy and Hollie!

This isn't just any junk either!!!

We had so much fun, and can't wait until next year, when the girls are a little bit older.

They twins are 16 months and completely walking now. For some reason, I can't post videos to the blog. I'm not sure what the deal is, but it just freezes up. But, they are walking pros. Kamryn is very vocal and is saying lots of words. She tries to repeat some of the words that you say. Brooke is just now starting to talk a little more. When you ask her what a cow says, she says, "mmmmm". So cute. But, then when you ask her what a dog says, she gives the same response.

Hollie is doing so well in soccer and volleyball. She's goalie for her soccer team, and is "fearless". She has now come to love the sport, as she is awesome at her new position. And volleyball is going so well. She got 3 serves over the net during yesterday's game. We were all so proud of her. Shawn and I took the twins to the game, so it was hard to watch the entire time. But, from what I saw, she did so well. We were all so proud of her!!!

Until the next post... please pray for Baby Ava.

Love,

Stephanie

Ava Update

2010-10-24T08:43:00.002-05:00

Hi everyone. I wanted to let everyone know that Ava has been moved over to Children's, so that she can be near the Ecmo machine. She doesn't need it yet, and it's looking more and more like she won't, as they want to protect her good lung. She's in critical, but stable condition. I spoke with Jennifer late last night, and she sounded good, but tired. We really need to lift Ava, Jennifer, Todd and the nurses & doctors up in prayer. Todd is posting on Twitter, and you can follow his updates there. j_t_dickerson is his Twitter ID. I've never "tweeted" before, but it's pretty easy.

Love,
Stephanie

PS - Pumpkin patch pictures will be loaded later today!