News

Wasn't going to blog because things are incredibly difficult right now. After reading all of your comments I realized we have left all of you wondering what's going on. Things are not looking so good for Ava. She was unable to trial on Friday because she developed an infection which was dropping her blood pressure. She is on antibiotics to treat it but it is very difficult to treat the bacteria because they could be hiding throughout the ECMO circuit. We have had some really rough days. Each day it is more and more difficult to face the day and step foot into the hospital. We keep waiting for "the talk" when they tell us there is nothing more that they can medically do for her. We haven't had it yet so they must feel there is still some slight hope for her. We continue to pray. Please do the same.

Quick Update

Talked to Dr. Hirsch today about the ECHO results. While the ventricular function has improved since after surgery, it is still considered moderate to severe in function. After surgery we were also told that Ava's mitral valve was severely leaky. Now it is moderately leaky so it is improving. They hope that as she gains function in her ventricle this will continue to improve. Her left lung was collapsed from lack of use while on BYpass and ECMO. It is now better after conditioning for the last 24 hours. If her lung xray looks the same or better, they plan to "trial" her off ECMO (the heart/lung machine) tomorrow for a short time. This is to see how her heart/blood pressure tolerates it. They have told us that they are not expecting a lot from the trial because her ventricle is still weak. They hope to gain more information from the trial, however. Dr. Hirsch and the Cardiologist say they are "cautiously optimistic" that she will come off of ECMO at some point. We just need to get to a point where her ventricular function can tolerate the work on its own. At this point I am hoping for the best but preparing for the worst.

Thank you for keeping Ava and our family in your prayers during this incredibly difficult time. Happy Birthday to my dear husband.

Stocking full of ODDS!!

Christmas is and was a special time, but even though Ava has never seen or had a Christmas before it just wasn't the same with her miles away from the us. Santa did bring her a lot of things but he ran out of magic when it came to getting her home.

Either way we returned to her bedside Christmas day. She continues to loose weight which is what they were trying to do to allow her lungs to start regaining function. She lost one and a half pounds on Christmas day. (I'm sure a lot of the people out there would like to know that diet plan.) It's called never giving up. She had an ultrasound last night and so far everything looked good. Jamie was very worried about this morning because they were to perform an Echo on her heart to see if it is functioning correctly. This was to decide the direction we were going to take her. Either one way or another. While Jamie and I were on the phone they came in and did this. It took like 1 minute which was weird because it normally takes at least a 1/2 hour. It turns out her little heart is performing better than it was right after surgery. The valve replacement is working correctly which is great. But we need to keep in mind that everyone there just keeps saying they are all hopeful. The list of things that Ava needs to go correct without any set backs is crazy. But at least I can scratch this one off.

I know its not much news but to me, she's a hero. I remember when I was little I cried about striking out in baseball. This little girl has had three surgery's and doesn't seem to care. They keep knocking her down only to see her get back up stronger than last time. I'm very serious when I say watch out for her when she grows up. She will be the one leading the way in whatever she does. She has already lead me to believe!!!

Odds equal Hope

Right now Jamie has just left with her sister, they are on their way back home for Christmas against all of Jamie's will. Ava is just hanging in there. Last night she started having seizures which the nurses had under control around 4:00 in the morning. Today she had a CT scan to determine the cause of these but the preliminary results show nothing. Carol and I are on our way back to see her and see if any other news has come from this.

Dr Hursh has commented that Ava has accomplished her goals for yesterday which was to rest and loose some of her weight. This morning she was around 12 lbs. Great news from the Dr. but Ava's road ahead seems to be getting smaller. We can only ask for a miracle because at this point, we feel like that is her only odds. Keep praying, she needs it.

Jamie, I apologize for trying to put a positive spin on things, but I'm not ready to face reality. She still does have a chance!! Tell Brayden I Love him and I'll be home tomorrow.

Critical

Ava is on life support to let her weak left ventricle rest. The ECMO machine is completely doing the work for her heart and lungs. Her heart went through so much from hours and hours of surgery. They took out the mechanical valve and put in a homo graft during the second surgery. Ava is puffy and looks awful. She is very "sick". They don't expect to see much from her today. If she is not starting to regain some pumping function from her left ventricle on her own by late Sunday, we will have to discuss our options. The next 72 hours are crucial for her. Please continue to pray!!!

12 hours of surgery

This will be short and to the point. Ava did not do well at all in her surgery. The mechanical valve that was put in, in her 6 hour morning surgery didn't work out for her. It was to tight of a a fit. Nobody knew that this was going to happen until after the surgery was complete and they took her to the cath lab to make sure everything was all and well. So she had to undergo another 6 hour surgery a few hours after her 1st one to fix it. I don't know all the technical details and words but they had to resort to the surgery that wasn't wanted. This was the one that the risks out weighed the gains. Right now it's 1:15 in the morning and Jamie and I haven't got to see her since this morning at 8:15 when we left her in the OR. She is on her way back up to the ICU now though. We will able to see her sometime tonight. She is currently on an ECMO machine and a pacemaker. We don't know how things will shake out yet so this might be the last blog for awhile while we sit and wait. after 72 hours we will know what the outcome will be.

Praying for Another Miracle

Open heart surgery again tomorrow at 8:30 a.m. They will replace Ava's leaky truncal valve which acts as her aortic valve. Just please pray for strength and healing of Ava's tiny heart. Also, for a smooth and somewhat quick recovery. Hoping for no new surprises (unless they are positive, like she only needs a valve repair instead of a replacement). This is the season of miracles, right?

So Many to Thank!

Ava's been sleeping alot lately. She had a chest xray because we were worried about fluid overload since she had a blood transfusion last Thursday. She gained 2 ounces overnight and she's not getting anything but TPN and lipids for nutrients. They gave her an extra dose of diuretics to compensate. All of her stools have come back negative for blood. Trying to enjoy every second with her before surgery. Even if all goes well I won't be able to hold her for awhile after surgery. That will be hard to get used to again. My arms have gotten so accustomed to having her in them all day long.

Thank you Mrs. Timm and Mrs. Phillips for the school pictures, and the pin with Ava's picture. Thanks Gretchen and Dan for coming to see us and for the baby gifts. Ava loves to watch them. Thank you Rudluff and Davies families for the beautiful bracelet. I already had one with Brayden's name. It's perfect. And, Amy I appreciate what you're doing to help out in my classroom. The students are very lucky. Thank you Emilee for the bracelet as well. It's just what I need for inspiration on those tough days. Thanks Michelle for the thoughtful gift of massage, I hope I can get out of the hospital someday to use it. Thanks Tracy for taking Zeke to the vet last weekend. Thanks, Dixie and Carol for cleaning the house last week. Thanks, Dan for cleaning the carpets. It's so nice to know the house is clean when I come home. Thank you Wilma for getting groceries for the house since the boys were almost out. Thanks, Mom for the basket of goodies. Brenda, Michelle, Janelle, Lori, Beth and Emilee thanks for the Christmas trees and ornaments. It was so thoughtful of you. Kelly, we had so much fun last weekend opening the gifts you brought in the basket. Emily W., Brayden loved the stickers you sent. They kept him busy for hours this weekend! Thanks Ethan and family for dropping off the gift bag when you were at Mott last weekend for a checkup. I hope all is going well for Ethan. Jamie and Brayden loved the home cooked meal you sent tonight, Janelle. It sure helps Jamie out when he doesn't have to plan dinner. Thank you, Catalanos for plowing the driveway. Jenny, I get so many comments about the adorable U of M blanket you made. Thanks so much. I hope I haven't forgotten anyone. We are so incredibly blessed to have such thoughtful, caring people in our lives. We can't thank you enough for all of your generosity. We hope that someday we will be in the position to help some of you when you need it.

Praying for Ava and all the children at Mott that have to overcome so much. Keeping Molly, Troy, Tim Glover, and Molly's mother in my daily prayers as well.

Long Day

Ava's doing fine. She's been a bit fussy lately because of gas and not eating.

It's been a long day. Jamie and Bray left early because of the snow. I miss seeing my son each day. I miss him so much. It's hard to believe we've been here 11 weeks, 78 days, and three seasons (it was 90 degrees when we arrived and now it's a blizzard outside). Still such a tough road ahead of us, too. I know this will be a tough week for me. Not even three months old and having two open heart surgeries. It's amazing.

Please, Lord, give Ava and Jamie and I strength to get through this! Please continue praying for my sweet Ava, everyone. We need your prayers now more than ever.

Fran, Ava's wrist is 4 inches. Measured it two days ago but forgot to call, sorry.

New Surgery Date

Ava had a pretty good day. Her xray today showed even less irritation in her abdomen. Her stool came back negative for blood again and her blood work was fine. We think we're on the right track by giving her tummy a rest from feeds for a while. She is given lipids and TPNs by IV for nutrients. She is being a little champ about not getting fed. She's a little more fussy but doesn't seem to mind so much.

Dr. Hirsch changed her valve replacement surgery to Thursday, December 20th at 8:30 a.m. We are praying that nothing more comes up to get in the way of surgery and that all goes well on Thursday. They will close her chest in the O.R. this time which is good.

Going to spend time with Bray! Goodnight!

Quick Update

So Ava's xray of her abdomen was much improved today. Her blood work looks fine (no increase in white blood cells indicating infection) and the one stool she had tested negative for blood. We hope we're on the right track and will continue to watch her closely. Still hoping for the now much needed valve replacement surgery on Wednesday, December 19th. Her heart function is apparently now starting to effect the other parts of her body. The plan is to keep her off of feeds and on antibiotics until surgery. She has been quite the trooper and not too grumpy about her empty belly. She had another PICC IV line put in today in the cath lab because her other one failed on Monday. She was sedated for this procedure which probably helped her sleep more and crave food less today. The poor baby has so many bruises, scars, etc. from all of this. It's been a rough couple of days for her because she's been poked and prodded so often.

Hoping and praying that we continue down this path of healing for Ava's GI area. If things continue to improve she'll have her second open heart surgery next week. It's hard to imagine going through all of this again.

So many people to thank (I have a list to keep track)! I am so exhausted, however and need to get to sleep because it's late. So thanks to everyone that has helped our family in any way. Thanks, especially, for your continued prayers!

ECHO Results

Dr. Hirsch came in to tell us that Ava's annulus is just barely the diameter it needs to be for surgery. There was a change in function and size of the ventricle which shows that it is starting to be effected more by the leaky valve. The valve replacement surgery was scheduled for Wednesday, December 19th.

Of course things do not work out so easily for us. Soon after finding this out Ava developed blood in her stools. They were very concerned and ran several tests. The xray showed a dilated bowel. They believe it's the beginning of NEC which is what Rhyer, Ava's roommate, has. This can be very serious but they are hopeful that we caught it in time. They believe that the leaky valve is causing some of her organs to suffer a bit from less blood flow. Another catch 22. She cannot have surgery with this NEC issue but she needs the surgery to help with blood profusion to the other parts of her body. Course of action: take her off feeds and put her on antibiotics. So she is now back on IVs except for a few oral medications. The idea is to give the intestines, bowels, and colon a rest. If her xrays, bloodtests, and stools do not get worse she may still be able to have surgery next week. They say that most of the time kids stop having bloody stools and the area heals soon after they go off feeds.

They say the first two days are the worst when the kids can't eat and then they get used to it. She was actually quite a trooper today but we'll see what tomorrow brings. Once again, I'm feeling very defeated. Please pray for strength for Ava and I! Thanks!

Echo date moved

Sorry but this will be very short. I have strict instructions to keep this to just the facts and no random thoughts.

Ava's Echo has been moved from this coming Friday to tomorrow on Wednesday due to her having high PVC's. So hopefully everything goes well. What that means I don't know. Do you want the sweet baby girl to be home for Christmas or do you want her to get the surgery she needs as soon as possible? That is the question. Bryaden wants her to wait so she can come home and help hide magic key for Santa, so he can bring lots of toys for them to play with. I myself don't care, I just want her better which I'm sure her mom does as well. Anyways, pray for some sort of news tomorrow.

We'd like to thank our good neighbors Bill and Kelly for the offering to do anything, Kelly Best and family (Your dog is beautiful, and your mother in-law (I don't' mean beautiful although she's not bad)), Michelle and Jason, Emilly Lake and family (sorry no pictures please at Sheltons) and anyone else that has helped us during our trying times. Carol Uell is a god sent angel and we can't thank you enough for all you have done for us. You have kept our family together with your presence. There are so many people to thank it is hard to keep track of.

Thanks again to everybody

Hanging Out

Ava is doing fine. Her weight gain continues to increase steadily. Dr. Hirsch thinks she can even see a fold or wrinkle starting on her wrist as it gets more chubby. We have had some okay days (low stress) here lately. Last night she did start to PVC continually for about an hour and a half. A PVC is the irregularity of her heartrate. We haven't had a problem with these PVCs in awhile. They started around 10:30 p.m. but were done by 1:00 a.m. She hasn't had another one since. Oral feeding (20 ccs) three times a day is going well. Most days Ava is awake often and alert. She's usually in a good mood and gives lots of smiles. We are enjoying our walks around the unit.

Ava's next ECHO is in one week, December 14. If the diameter of her anulous (area around where the mechanical valve will go) has grown to 15mm they plan to do surgery the week before Christmas. While this won't make the holidays very jolly, it will hopefully all go well. It's our chance to move forward (hopefully) and get closer to coming home. Tomorrow will be ten weeks that we've been here. It seems like a lifetime.

Carol Eull has offered to come back next week to stay with Ava while I come home. Ava is stable enough that I feel comfortable leaving. I plan to have Brayden stay here with me Sunday night and then we'll come home together Monday. I will stay another night at home (the second in ten weeks) and return to U of M on Tuesday. We are going to plan on getting our Christmas tree Monday evening. It will be nice to spend time together as a family outside of the hospital. I only wish my baby girl could be with us too.

Rhyer, Ava's roommate, had heart surgery but is now suffering from some GI problems. He is 2 days older than Ava and has been here since birth. One of his stools tested positive for blood again this week which slows them down again. Courtney feels that things are never ending for them, too. She is very frustrated. Now that we've gotten closer it's hard to see her suffer. My heart aches for their situation because I know how incredibly difficult it is to have no end in sight. Please keep Rhyer and his parents in your prayers along with Ava.

A Better Day

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!

"The Floor"

So yesterday we were moved to the floor. We are rooming with Courtney and Rhyer. Of course Ava starts to gag and spit up too. So guess who couldn't walk out of the hospital last night? I have real concerns now that she is not in close proximity to a nurse. What if she vomits and they don't know? Her nurses now have up to five patients in separate rooms! However, I know how much I can physically take and I can't be at that hospital 24/7. I only got about 3 hours of sleep and I'm feeling exhausted and emotional after only one night. She hasn't spit up now since 6:00 a.m. We finally have her feedings figured out on her new NG tube. We just have to let it flow very slowly so she doesn't get sick. Tonight, I had to come back to Ronald McDonald House and get some sleep. I am praying that Ava has a good night and that her nurse watches her closely. I stayed until midnight when her nurse came on and expressed my concerns. I am trying to believe that everything will be okay and not to worry but it's really difficult. I want to stay with her but I know I need sleep, too. Praying for Ava's continued growth and healing. Asking God to watch over her when I can't be there. Also asking Him to give me strength and courage to leave the hospital each night.

Ava had a low grade temperature this morning but nothing has come of it. Praying she's not getting sick. They plan to send Ava out of moderate care tomorrow and onto the regular unit or "the floor" as they call it. This will be another adjustment but we will have the same nurses and nurse practitioners that know Ava pretty well. I am hoping to share rooms with another family that we have gotten to know pretty well. The mom's name is Courtney and her baby is Ryer. He has a different heart condition but has been here as long as Ava and has had many obstacles to endure. She is also here most of the time by herself and she has a two year old daughter at home. They also will be here until after Christmas so we seem to have a lot in common.

Feeling pretty blue today for many reasons. Sundays are always hard on me. The last two weeks I've been able to see my guys for more than just two days. Looking ahead at this week seems dreadfully long. Five days until I see them again. It seems like forever. I'm hoping that if Ava gets to room with Ryer I won't feel so alone here.

Jamie was sick the entire weekend so Bray hung out with me at the hospital most of the time. It was harder to spend quality time with him since Jamie couldn't take shifts at the hospital. Everyone commented about how good he was. It's too bad he has to spend his weekend cooped up in a hospital room but he doesn't seem to mind too much. Now I feel like I might be getting a sore throat. Praying I don't get sick - I don't have time for that right now!

Thank you, Dad, for picking the boat up to winterize it and get it in storage. When Jamie and Bray got home today Randy Wideman was putting Christmas lights and decorations on the house and in the yard. It was suppose to be a surprise. Thanks Randy and Emily, that was so thoughtful of you. We are trying to make the holidays as special as we can for Brayden's sake. It was so nice to see nurse Cheryl today. Thanks for coming to visit Ava from ICU. And, Carol Eull, you have no idea how much it meant for me to come home for Brayden's birthday last week. I didn't worry a bit about Ava (well maybe just a little) but I knew she was in good hands. I knew you would be cuddling her in your arms all day long just as I would if I were there. I cannot thank you enough for that. The day away was something I really needed.

Cherish all that you have and remember we all have so much to be thankful for! As always, thanks for your prayers.

Change of Plans

Talked to Dr Hirsch today and the plan has now changed for surgery. They wanted Ava to get bigger so the leaky valve could increase in diameter. They originally thought this might take 3-6 months. The diameter of her valve would need to be 15 mm in order to put in a mechanical valve. The echo showed that because of the regurgitation her valve is almost that big now. It is at 14 mm. In two weeks they will repeat the echo and if the valve diameter is the correct size they will do the valve replacement surgery the following week. That is the week before Christmas. If it's not 15 mm in two weeks they'll do surgery after the holidays. Dr. Hirsch said that the new valve would last her way into adolescence. The conduit from her first surgery would need to be replaced much sooner (in 2 to 5 years).

Dr. Hirsch expects this surgery to be much easier on Ava. It is still open heart surgery with a lot of risks but it's not as major as the first. She's not as sick as she was for the first surgery and she's no longer a newborn. Dr. Hirsch says Ava is a "tough nut". She expects her to be in the hospital about three weeks after surgery. She says that Ava would have been home a long time ago if she didn't have this leaky valve. She has had to work so much harder to recover because of that deficiency. Once the valve is replaced she expects Ava to have a much better functioning heart. This will help her feel so much better and not have to work so hard. I pray Dr. Hirsch is right and Ava can start to recover normally and get home.

While it is scary to think of another surgery so soon, she will need it sooner or later anyways. If she is ready now, it may as well be sooner. The holidays will be rough, though, I'm sure. It also made me nervous to think of taking Ava home between surgeries when her heart is not functioning as well as it could. Hopefully she'll be feeling much better by the time we finally get to take her home.

Ava had a great day today. She was very alert and content. I got lots of smiles! I love days like this.

Thank you to our families for making Brayden's birthday so special. Thank you, Tracy for modifying some of Ava's clothes so she can wear them with all of her wires. Now she doesn't have to wear a blue hospital gown every day. Thank you Mark Grishaber and Dave Landon for offering to winterize and store the boat for us. My dad is suppose to take care of it for us this week.

Praying that my sweet baby girl will be tough enough to endure another surgery and come home with us!