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!

ECHO results

Echo showed no change. We haven't talked to cardiologist or Dr Hirsch but the nurse practitioner shared with us these preliminary results. At least the right ventricle and leaky valve haven't gotten worse. The goal would be to get Ava stable enough to come home at some point to grow before the valve replacement surgery. She now weighs 8 pounds and 5 ounces! They expect us to go to the regular floor first of next week. I will be able to stay nights with her then.

Brayden's birthday went well. When he blew out his candles and made a wish he wished for Ava to come home soon. It was the sweetest thing.

Know this is a short post but Jamie is now sick. Go figure. So Brayden and I are heading back to the hospital. Thought you'd all want to know the results of the ECHO though.

Keep praying!

8 Pounds Yet?

Yesterday Ava was one ounce away from eight pounds. I may walk into the hospital room to find that she's an eight pounder today. Everything has been pretty smooth lately (blood pressure and SVTs under control, etc.) Ava was very happy and alert yesterday. She was awake most of the day and very content. Michelle Asmus brought a Boppy up for us to use and she loves sitting up in that thing instead of being on her back all the time.

I am a bit uneasy about leaving tomorrow morning but I pray all will go well here. Carol will be here in the afternoon with Ava and I've "reserved" one of the full time volunteers to hold Ava in the morning. He's an older man that is so good with the babies. He just loves and cuddles them (especially the ones whose parents aren't around very often). He seemed thrilled to help out with Ava on Thursday.

Jenny brought me dinner and helped me wrap all of Brayden's bday presents last night. I will take a few home for the party at my dad's in the evening. The rest will stay here at Ronald McDonald for him to open. We're going to have a little celebration here on Friday, just the three of us. Praying we have more than just a birthday to celebrate since the ECHO is Friday too. Thanks to my sister we will be taking a treat to Bray's class on Thursday. And Fran is putting on the party at her house Thursday night. Thanks guys, we couldn't have done it without you!

Thank you Gretchen for all your kind words. By the way, you can call anytime, don't worry about the minutes. I just increased my minutes to 2000 per month! Thanks, Brenda for the encouraging words, support, and ornaments. It's nice to know I can call to talk to someone that has been through something similar.

Please pray for Ava's strength and healing. (I don't know why I always ask you all to keep praying because I know you are! Thanks!)

"Status Quo"

Ava is still what they call "status quo". Not too many changes to the plan - just working on getting her bigger and stronger. She has gained 11 ounces in about twelve days which I think they're happy with. She now weighs 7 lbs 13 oz. The last 24 hours she has been very gaggy with her feeds and has thrown up several times. This wears her out and she's been pretty sleepy today. The nurses said she was fussy this morning but that they've decided she likes to be held - oops I guess I have been doing that a lot lately. Ava's heart rate has been under control for the last 36 hours and she has not had anymore SVTs. However, they had to come down on her Captiprol medication (which helps her heart profuse blood) because her blood pressure has been low. They are doing this instead of holding her Enderol which was causing her to SVT. Wednesday Ava can start having breastmilk again instead of Portigen formula. That's a good thing since we are running out of freezer space to store it in. Both our parents' refrigerators are full as well as our own.

Dr. Hirsch said Ava looks good today and if the ECHO is okay we'll just continue down this path. That's better for Ava but means there's no end in sight for us to come home. Missing home and family so much right now. Don't take for granted all the happy, easygoing moments in your life. Life is too short and there aren't enough of those moments sometimes. Still planning to come home for Bray's birthday on Thursday. I am excited to share his day with him but will have a difficult time leaving Ava. Although I will miss her, I know it will be hard to come back to this lifestyle after being in Niles over night.

Thank you Mark Grishaber for finally getting our snow covered boat out of the yard and into the garage. Thank you again, Jason, for all of your help with the dogs when Jamie and Bray are here with me. Thank you, Fran for dropping food off to Jamie and for the special gift, too. It will certainly come in handy. Hearts of Hope Foundation also sent us a VISA gift card to help families with expenses. There are so many wonderfully generous people in our lives. We appreciate all that you are doing for us!

Keep Ava and our family in your prayers, please!

Just an Update

Still in Moderate Care and Ava's doing okay. Monday through Wednesday Ava had some SVTs (high heart rate for a sustained amount of time) which is concerning. Then we had a few less worrisome days and now we're back to the SVTs. The medication that she is on to help control and regulate her heart rate causes her blood pressure to drop. So they often hold her meds when her blood pressure is already low. It's a vicious cycle. They held her Enderal at 6:00 a.m. and by 10:00 a.m. she was SVTing. So far this afternoon we haven't had any more(knock on wood).

Ava also threw up a couple times on Tuesday and so we are tube feeding again for awhile. Not sure if this is due to gulping and refluxing or a reaction to the SVTs.
Ava has been off of the "whiff" of oxygen since Wednesday and her saturations look good still. She definitely lets us know when she is unhappy. You can hear her cries from down the hall now. She is gaining some weight and is up to about 7 pounds 11 ounces. Right now an ECHO is scheduled for Friday and then we will reevaluate the plan for surgery. Please pray that her leaky valve and ventricular function hasn't gotten worse so that surgery isn't in the immediate future.

Daddy is at the hospital with Ava right now and I'm back at Ronald McDonald House letting Brayden take a nap. He's got a bit of a cold again and so we have been taking shifts between he and Ava. Jamie and I don't see much of each other this way but it's more important that we be with the kids right now.

Having a difficult time thinking about the holidays. It's all a bit depressing. All the little things that I guess I've always taken for granted. Where will our lives be in another month? Sometimes I still can't believe this is happening to us. This is something you hear about that happens to other people. You never dream it will happen to someone you love.

I am going to try to come home for Brayden's birthday on Thursday. If I am able to I'll probably stay the night, too. Carol Eull (a close family friend) will come here to stay with Ava since all of our family will be at Bray's party. Carol is a student nurse right now and I know she'll take great care of Ava while I'm gone. I am still feeling very uneasy about leaving but I cannot imagine not being with my son for his birthday. Please pray that this week will go smoothly so that I can be with Brayden at home for his birthday.

Thank you to my family for traveling to Ann Arbor for Thanksgiving to be with us. Thanks Laura for the beautiful frame and picture of Bray and Ava. Thanks Fran for the diaper bag and food. It was so nice to see Becca, Taner, Nathan, Aunt Kathy and Cheli today. Wilma, I love the outfit you bought Ava. And to Amy Archer and Peg Maiers, thanks for your inspiring words this week. I really needed that this week.

Please, please, please, continue to keep my baby in your prayers. She's had a rough eight weeks and still has a long, bumpy road to travel!

Happy Thanksgiving from Aunt Trace

I couldn't get this off of my mind all day and I HAVE to share it with everyone!
First of all my husband and I (Aunt Trace and Uncle Mark) were unable to spend Thanksgiving at the U of M, but, Grandma Z called early this afternoon from Ava's room and I was able to listen over the phone to the most precious sweetest sound I have ever heard, Ava talking! Yes, I heard her her beautiful voice, sound like little song birds singing. OK I may be prejudice, but who cares! She is talking!
I wont go one, but just had to share with everyone the best gift on this Thanksgiving Day!
Now that is something to be thankful for!

U of M Report

It has been so busy here lately. Now that Ava is in Moderate Care I rarely leave her room. The nurses do a lot less caregiving when a parent is there. They quickly teach you to help with medicines, feeding tubes, etc. Ava is taking 60 ccs of formula (fortified with 30 extra calories) every 3 hours. We usually feed her between 30-40 ccs by mouth and then put the rest down her NG tube (tube that goes down her nose and into her stomach.) She gulps down her feeds so quickly that she gets worn out easily. Dr. Hirsch explained that we don't want her to work so hard that she is losing calories. That would defeat the purpose.

The last few days have been fine but not without glitches. Ava's heartrate was high again on Monday and continues to be somewhat irregular. They are increasing her cardiac meds which sometimes causes her blood pressure to drop. Tonight she was pale and working a bit harder to breath so I had them page the cardiologist who adjusted her diuretics. Everything is such a balancing act. Always something to worry about.

Jamie and Brayden will be back tomorrow night and I'm so happy they'll be able to stay four nights. Both sides of our family will be here for Thanksgiving. We have reservations for 18 people. While it certainly won't be the same home-cooked feast we are used to at least our whole family will be together. We certainly have a great deal to be thankful for!

I am considering coming home next Thursday for Brayden's birthday. This of course depends on how Ava is doing. We'll see if it all works out.

So many people to thank: Thanks Molly for your comment which made me feel that someone else understands in some way how I am feeling. You and Troy Meek continue to be in my prayers daily. Thank you Michelle and Jason for visiting this weekend and for the gifts. (We are not always thanking you as we are crawling, hopping, and running around the room with a crazy elephant mask on!) Thank you to Randy, Josh and Becky for all of the food and gifts. I cannot believe how generous you are when we barely know each other. Thank you to Jenny's friend, Heidi, from work who sent gifts our way. We have never even met before! People are so kind! I will be praying for your child as she goes through surgery in December. Thank you Beth and Lori who sent me the sweetest ornament which reads "A mother holds her children's hands for awhile, their hearts forever." Thank you to the staff at Complete Chiropractic for the generous donation. Thank you to Frank and UFP again for being understanding about Jamie missing work to be here during the difficult times.

Please continue to keep Ava in your prayers. I struggle each day to remain strong and positive, not knowing what the future holds. It helps to know there are so many of you out there thinking of us. Your words of encouragement are always appreciated.

What will the future hold?

Things are extremely difficult for me right now. Too many unknowns in the future. Anyone who knows me well knows that when I am upset I withdraw. Each day has been an emotional struggle for me and that's why I haven't been able to blog.

But here's an update for Ava's devoted fans. Things are going okay for Ava. We are trying to take things one day at a time. Ava is stable and has been in Moderate Care since Wednesday. She's back on a "whiff" of oxygen (one eighth of a liter). Ava started smiling at us this week. She is also starting to have a bit of sound when she cries. She has gained a bit of weight and is now at her birth weight of 7 lbs 8 oz. In a week and a half they will look at her growth and do another ECHO of her heart. They will reevaluate what to do about her leaky valve at that time. Will we wait longer or will she need surgery soon? Only time will tell I guess.

Please continue to keep us in your thoughts and prayers.

Jamie, this post is for you. Ava WILL get through this!! It may not be the easiest road for us but it's at least a road and I truly believe that. I believe it as much as I knew she was a girl. Do you remember when you first got pregnant with her? I told you then that is was going to be a girl and I'm telling you now that she will get through this, that's how much I believe it.

She doesn't have a chance not to. Her big brothers friends haven't even had a chance to see her. How are they going to be making passes at her if they can't see her? I haven't even gotton a chance to take her to a school dance? And by the way when she does grow up, Brayden will be taking her to prom but I we can talk about that when the time comes.

Anyways Jamie I love You!! Thank you for so much. I never would have thought that two girls (you and Ava) would show ME what courage is. I didn't EVER think that you would be stronger than me, but you are. I look up to you everyday even when we are not here. I know you really don't believe it but you make our house a home, and I can't wait until the four of us can get back to that point.

Thank You Jamie for everything. I honestly can't say it enough but Thank you and I love you. Thank you for my two beautiful children. I can't wait to show them off when we get home.

Jamie wanted me to blog something, but her last blog pretty much summed it up. Ava's options are pretty much limited to 1. What can you say? We walked into her room this morning to a great surprise though, somebody got Ava dressed for the 1st time in her life. Jamie keeps saying she looks like such a normal baby being dressed.
She seemed to do very well today considering what we now know. I was pushed into helping feed her today by the nurse, which wasn't as bad as I thought it would be, actually we enjoyed our time together.
Grandma and Papa came up to see her today and she smiled at grandma a few times. Jamie said she smiled at her yesterday for the 1st time while she was awake. Ava does smile alot when she's sleeping. I think it's because she knows she's got us wrapped around her finger and she's laughing at us.
Anyways, good luck to my sweet girl and good night. We will see you in the morning. Bray wants you to know we all love you and for some reason he wants you to turn into a boy. Usually I would jump up and say something about this, but at this point, I don't care. We just want you to get better and come home. We love you Ava!!!!

Broken Hearted

This morning an ECHO was done on Ava's heart. It seems the leaking valve has gotten worse which is preventing Ava's progress. Dr. Hirsch explained that there are no good options. The valve cannot just be repaired. It must be replaced with another bypass surgery. What she really needs is a mechanical valve but she is too small to receive it yet. The other type of valve is too risky right now. She said the risks outweigh the benefits and they would only last a little while without needing surgery again. Our only good chance is for Ava to grow and get stronger (which she hasn't done yet, she continues to lose weight daily.) In three to six months she could undergo the mechanical valve replacement if they can get her to that point. They will redo an ECHO in two weeks to see if the valve has gotten worse or has effected the function of the rest of the heart. They will also check to see if she's gained weight. They will reevaluate at that time. If things aren't going well they will have no choice but to perform the very risky valve replacement which won't last long and will require another surgery soon after. They say the mortality rate for this is high but they are not giving up hope. They have seen patients much worse than Ava survive this.

Jamie and Brayden rushed back here when we got the news. May be unable to get my thoughts together enough to blog daily this week. However, I wanted to update everyone because we need your prayers more than ever right now! If lots of love and prayers can get her through this than she might just have a chance.

Not Quite Ready to Leave ICU

So I got a call at 7:00 a.m. this morning that Ava had a slight fever again. Her lactate was increased but still within normal. Her white blood cell count was up too. Again they took cultures to determine if there is an infection. Since then her lactate is back down and her fever is gone. Won't know about cultures or white blood cell counts until tonight/tomorrow morning. Ava's heart rate, respiratory rate, and blood pressure are a bit on the high side. She looks really good, though. What does all this mean? The cardiologists are not real concerned but are keeping her in ICU to be cautious. In fact, during rounds this morning they joked that she caught wind of going to Moderate Care and decided to act up just enough to stay in ICU. I am just so thankful that this happened while she was still in ICU and not after we went to Moderate Care. She will still probably go to MC sometime this week unless something else comes up.

I forgot to mention that Brayden got to hold Ava for the first time this weekend. He was so happy! I've been doing a lot of holding lately, too, which is so comforting for both of us. The nurses even got Jamie involved in holding/caring for Ava over the weekend. He's a bit fearful about how delicate she is. I'm glad they are pushing him a bit so he can overcome this nervousness.

Candais and Ke'Myiah are back in Moderate Care because of some oxygen problems she was having over the weekend. They hope to go home maybe next week. Please continue to pray for her along with Ava. Also, pray that I can handle anything that comes my way this week!

Not Even A "Whiff"

Ava has had a good weekend. We started bottle feeds again today and she ate like a champ and tolerated it well. This is one area (knock on wood) that we have not had issues with. Ava has also been completely off of oxygen for the entire day. Can you believe it? For the last three days she has been on only a "whiff" or one-sixteenth of a liter. Each time they tried to take her off, though, her oxygen levels dropped. It is so nice to see her little face without those tubes in her nose. They also removed her central IV line. They discontinued her antibiotics too. The last few days she has had higher blood pressure which is not typical for her. Usually her pressure is a bit on the low side. They do not seem too concerned and Dr. Hirsch says if they need to they can give her something to reduce it. We will probably be sent to Moderate Care tomorrow. I keep telling myself that this time will be different. Now that they know her history I pray they will be a bit more cautious. I have also learned that I must trust my instincts and speak up more often.

We were blessed over the weekend to have great nurses taking care of Ava! She had both of her associate nurses. Amy took care of her during the days and Jessie had her at night. You have no idea how comforting it is to have people on who know Ava well. We completely trust them with her care. Hoping all went well for Jenna (Cheryl's daughter) at her cheerleading competition this weekend.

I am feeling blessed for the calm weekend so that I could spend some quality time with Brayden. I felt terrible last weekend because we looked so forward to seeing each other and then all hell broke loose in Moderate Care. This has to be so hard for Bray. He wanted to stay here with me today when it was time for them to head home. I wish I could have kept him but knew I couldn't do it by myself. Always looking forward to the next weekend when we can all be together again. Take care of my boy, Jamie Lee!

Thank you Linda Timm for the multiple copies of books so that Bray and I can read a bedtime story together. I think it means more to me than it does to him. Thanks Aunt Stace for the gifts. Brayden loved the dinosaurs. Thank you too for taking the kids to McDonalds this week. Jamison, thanks for protecting Brayden when the little boy was picking on you guys at McDonalds. You're a great big cousin! I appreciate you cooking meals for the boys this week, Kelley Best.

Praying that Ava makes progress and has no setbacks this week. Asking God for strength to deal with anything that comes my way this week. Goodnight all!

Team Meeting

Very quick update as I am trying to enjoy some mommy time with my son (taking a break from the hospital and letting daddy spend time with Ava). Ava passed her swallow test. That means there seemed to be no problem with reflux or aspirations. The meeting went pretty well today. They will be pushing us out of ICU by Monday if things remain stable. We should technically be in Moderate Care already but because of Ava's history they've been watching closer. We still need to get her diuretics and fluid under control and we will start feeding her slowly again by bottle early next week. They think some of her other issues will work themselves out as she grows and gets older. If EVERYTHING goes well with no more episodes she may be able to come home within two weeks. We are VERY nervous about this as we don't feel prepared enough yet. They assured us that with training, etc., we would feel comfortable. They say that home is the best place for her, away from all the infections, etc. at the hospital. Praying that Ava does well and has no more setbacks. Also, praying that Jamie and I are capable of meeting all of her needs at home.

Brayden wants me to tell you all that he loves Ava. He was also excited to see nurse Amy. He says she is his girlfriend (along with Mommy and Aunt Heather)! So glad to have his lighthearted presence back in Ann Arbor! I have missed everything about him, even the crabbiness.

Thank you Jenny for keeping me company and making me dinner on Tuesdays and Thursdays. Thank you Emilee and Fran for sending meals home with Jamie for he and Brayden. Once again feeling so fortunate for all the friends and family that we have out there! We know how blessed we are!

Our thoughts and prayers are with Lisa and Mike P. and their family during such a tragic time.

Finally Some Good News!

The ENT did some brief tests on Ava today and found that her right vocal chord was fine and while the left had less movement, it was not paralyzed. They think it is just injured as it is extremely swollen and irritated from being intubated. And I'm sure going back on the ventilator three times has not helped either! They say it could take 6 weeks to several months to heal. Right now they are giving her a steroid to reduce the inflammation. Tomorrow she is scheduled to go through a three part swallow test to see about the reflux and aspirations into the airway. These aspirations can cause fluid to get into her lungs because the airway is not closing. If she has reflux she can be medicated to help with it. But if she has aspirations because her vocal chord is not protecting her airway then she will need to be tube fed until the chord can heal. This could take several months. She went back on tube feedings yesterday every couple of hours.

Ava seems much more content today than yesterday. She has long periods of alert times but doesn't seem as agitated. I got to hold her for a couple of hours today and it felt great. Tomorrow afternoon we have a team meeting with her cardiologists, primary nurse, social worker and surgeon. This is to discuss the short and long term goals for Ava and to make sure we are all on the same page in terms of her care. Jamie and Brayden will get here early for the meeting. I can't wait to see them both!

Ke'Myiah is now out of ICU again and on the regular floor. I am so happy for her and Candais. Thank you for all of your prayers.

Wondering how things are going at Howard-Ellis these days? I miss you all (staff, students, parents, etc.) Hope all is well in room 9. Please tell my students I said "hello". I'm sure Mrs. VanTuyl is doing a fabulous job in my absence. Thank you Amy Rudlaff as I hear you have been helping out a bunch in the classroom. Happy Birthday to Cheryl, Ava's nurse!

As always, it means so much to have you all out there praying and supporting Ava and our entire family. What would we do without all of you?

Watching and Waiting

Ava has done okay today. She is only on .5 liters of oxygen on a regular flow cannula (through her nose). They started feeding her again today through her NG tube. She had a fever at one point and they took cultures once again to see about infection. You all know the drill - 72 hours to watch the culture to rule out infection. However, the fever came down on it's own and her SATS and blood gases have looked good. She has been pretty agitated (awake a lot but not seeming real comfortable) and they think that all of this may be related to the sedative they took her off yesterday. It was Adavan which patients can have withdrawals from when they stop taking it. Just praying that's it and not that she has another infection. They will be watching her carefully tonight and plan to start another antibiotic if her temp spikes again. She is already on two antibiotics for her infection where her incision is from surgery. The vocal chord scope was again put on hold because of the fever she developed today.

The cardiologist told me today that she'll be here (in ICU) awhile. They don't intend to let her go until they've got all these complications figured out. I'm glad they intend to take it slow especially since the episode we had in Moderate Care over the weekend which set her so far back. At the same time, I'm wondering if we'll ever get there.

Wishing Cheryl (Ava's wonderful nurse) a Happy Birthday tomorrow. Thank you so much, Cheryl, for all you've done for Ava and our entire family. We feel blessed to have you caring for her.

Keep praying everyone!!!

Quick Update

Ava did fine off the ventilator today. All three of her blood gases looked good. She was a bit cranky this evening because she wants to eat. They may begin tube feeding her tomorrow. They are also hoping to have ENT look at her vocal chords tomorrow. I'm told that if one of her chords is paralyzed they won't do anything to repair it for 4 to 6 weeks. This would mean no bottles - only tube feeding for that long. Everything seems like such a long road these days. I see so many babies come and go from the PTCU unit in a matter of days. I can't help but be sad that it isn't us. We've now been there for 38 days and counting.

Thank you Heather for taking care of my boys by feeding them and doing their laundry. You're the best! (You even know how to ice it baby!) Thank you, Jenny for feeding and supporting me tonight. I really needed it.

Pray for all the little babies here at Mott that are fighting. Ava, Ke'Myiah, Jack, Ryer, and Claire just to name a few! It's such a shame that they have to go through all of this suffering at such a young age.

3rd Time is a Charm?

Thanks for the sweet poem, Tracy. Also for Lisa's story and April Meek's birthing analogy. They are all very touching reminders of how powerful a mother's love can be.

Ava is doing okay. They started sprinting her today and plan to extubate her (take her off the ventilator) tomorrow. Please pray that the third time is a charm. Nothing has shown up on her cultures so they don't believe her rough day on Saturday was caused by infection. After she has been off the ventilator for a few days they are going to get the Ear, Nose and Throat people involved to do some testing. They believe maybe she has reflux or some type of vocal chord damage. Apparently if one of her vocal chords is paralyzed it doesn't close properly to protect the airway. It's possible that when she feeds and spits up it can go down into her airway. Friday night she threw up about half of her feeding (about 30 ccs). They will also be feeding her through a tube until they get the results from these tests. This means she will be grumpy for a few days because she loves her feedings. She is already a bit irritated today because she is beginning to hate that tube in her mouth and because she can't use her pacifier. Praying that all of these tests give the doctors the answers they need to help Ava move forward with her recovery.

It's been a gloomy day today. I miss my family tremendously and feel very lonely without them. At least I have my sweet Ava here with me. Praying that one day we will all be back home together! Thank you everyone for all of your kind words, support and most importantly your prayers! Goodnight.

For Mommy & Daddy

Jamie and Jamie, I found this poem and would like to share it with you and everyone else that is praying for your sweet baby girl.
It was written by Frank Greg.


Baby's Words
by Frank Greg
Although I am small and cannot say a word
these thoughts of my family I wish could be heard . . .
I feel all your love and the kind things you do.
I get so excited that I smile and coo.
A soapy warm bath or the comb through my hair
all your soft whispers that tell me you care.
Then wrapped in your arms it is safe and secure
protected with tenderness that is perfect and pure.
And if ever I'm messy, hungry, or cold
with just a small whimper I'm quickly consoled.
You kiss and caress to stop me from weeping
then patiently wait 'til I'm comfortably sleeping.
You make my life joyous, full of colors and fun
when I see you each morning your face is my sun.
So, if you aren't certain your gestures are felt
look deep in my eyes and I'm sure you will melt.
They say I'll grow fast like the blink of an eye
but do not be sad at the time that goes by.
Because I'll remember all you've given and shared
to get me through life completely prepared.
I'll be the great one who stands out in the crowd
your hearts will be happy I'll make you so proud.
I thank you so much for all that you do
and never forget that I love you, too.

I just hope that Ava knows just how lucky she is to have two of the most wonderful parents in the world. We love you.

Rough Times at U of M

Ava is stable but back in ICU and even back on the ventilator. They don't know if this is due to an infection, being pushed too hard or the leaky valve in her heart. Cultures will take up to 3 days to determine whether it's an infection. Jamie and Brayden just left for home. Heather is staying with me tonight. Too many emotions to express right now. Please keep praying!

To good to be true

This is just a real quick update on Ava's progress as of 3:00 Saturday. As I was sitting in the hotel room with Brayden (and uncle Bill)while he's sleeping (Brayden that is)Jamie called and said that they are moving Ava back into the ICU. She was doing well yesterday but after her 9:00 p.m. feeding last night she got sick and hasen't looked the same since. I think she still looks good but only her mother could tell something was wrong. Dr. Hirsh thinks she has some kind of virus so they are moving her back for now. When Brayden wakes up we will be heading back up and Jamie will give a better update later. She sure does let everyone know that she will be the one dictating how quickly she will get better.

Out of ICU!

Ava is doing very well. They moved us to Moderate Care this morning. She is no longer in ICU, hooray! We continue to hope and pray for continued progress and no more steps backward. Things have been very busy as they have moved very quickly in the last 24 hours. Ava is now being fed 60 ccs every three hours by bottle and she seems to be tolerating it well. The Moderate Care nurse says she is “amazing” with her feeds. She is now on a regular flow oxygen cannula and has been weaned down to one-sixteenth of a liter. That’s almost nothing.

Yesterday was another emotional day as Ava was taken to the Cath lab to have a PICC line put in. This is a type of IV from her arm that can stay in for up to 3 months. She has an infection in the incision area from her heart surgery and will need to be on antibiotics for six weeks. They have taken out all of her other IV tubes. This PICC line will probably stay in when we come home and I will have to learn how to put her medication in through the IV.

Anyways, before they took her for the procedure they told me that they would also check out her left pulmonary artery which they originally believed would need a catheterization/ballooning in the next few weeks. The MRI showed that it was extremely narrow. Right before they took Ava one of the Cardiologists said that depending on the results of the catheterization she may actually need another bypass surgery to repair the narrow artery. In fact, he said they were leaning towards this type of surgery in the next few months. I, of course, was a mess thinking about going through this all over again so soon. I couldn’t even imagine it. Long story short, after 3 hours in the Cath lab, they were thrilled with the results. Her left pulmonary artery is not near as narrow as they believed it to be! There was also some moderate leaking of the aortic valve but they didn’t seem surprised by this. They seem very pleased with the results. In fact, Dr. Hirsh (Ava’s surgeon) believes she won’t need anything done to either of these problems until she comes back for a conduit replacement in 2 to 5 years. (The conduit is the artificial part that will need to be replaced as she grows.)

So, we are settling in to our new room. It made me very uneasy to be out of the ICU unit at first. However, I am much more involved with her care here. I can hold Ava whenever I want! This is such a thrill! I also feed her with a bottle every three hours and change all of her diapers (except at night because I still can’t stay the night in her room). I’ll probably even be able to bathe her daily. It’s awesome to do all of these things for her myself!

Brayden and Jamie will be here this evening and I’m so excited to see them! Thank you, Linda Timm, for sending books that Brayden and I can read together each night. Thank you second and fourth grade students at Howard for your cards and letters. Thank you so much to the PCTU unit (POD A) for all of the fabulous care you have given to Ava these last 5 weeks. Cheryl and daughters, thank you for the gift to Ava that she can look at when she is alert. Erin, thanks for the U of M shoes, they now fit great. Brenda Brown, call me next weekend when you’re here. I’d love for you to stop by and meet my sweet baby girl. Thank you Heather, Granny and Aunt Kathy for feeding my boys this week.

Troy Meek and family, you continue to be in my thoughts and prayers. I hope all went well at your IU consultation. Continue praying for Ava's health and healing, your prayers are working!

Turning a corner?

Ava is doing incredibly well. What a difference a few days makes! A lot has happened in the last 24 hours. First of all, Ava's oxygen pressures have been weaned from 7 liters to just 2 liters. In the next day or so they plan to replace her high flow cannula to a regular cannula (no pressure just oxygen). She has been taken off of almost all of her regular medications except a diuretic and her antibiotics. Sometimes she is given potassium or another medication as needed but not on a regular basis. They removed her ART line today which was in her leg to get blood from instead of poking her all the time. She still has one in her belly button (umbilical cord) to draw blood from. This means that they are no longer checking her blood pressure using a monitor all the time. They simply use a cuff each hour to do it. I also started feeding her today with a bottle! We started with just 10 ccs but now we are up to 25 ccs and she is tolerating it well. They said that just because she was good at sucking a pacifier didn't mean she would understand how to swallow. Especially if her vocal chords are still irritated from the breathing tube being in there. However, Ava is eating like a champ. This doesn't surprise me as she came out of the womb wanting to nurse.

Most importantly she just looks great! I am able to interact more with her and to be a bit more involved in her care (feeding, holding, changing diapers, etc.) and that feels wonderful. We did have one scary moment today, however, when her heart rate jumped up into the 220s and stayed there for a few minutes. Apparently the nurse had held one of her arrhythmia medications because it can drop her blood pressure which was already on the low side of normal. Her blood gas also showed that she was low on potassium which can also do this. So between those two things her heart rate went sky high. It hasn't happened again and I'm praying that they have the problem solved.

How do we feel about all of these changes? Very nervous. Jamie and I are not at all used to things moving so fast with Ava (as you all know she does things in her own time). It feels good to have things moving in the right direction but it's hard because we don't want to get our hopes up. Dr. Hirsh is even thinking that we may be out of ICU and in Moderate Care by the first of the week. While this sounds great, there is a definite sense of security in the ICU unit. Ava is taken care of by her own nurse or one that is assigned to one other patient. Also, the cardiologists are right there if one is needed. Please pray for Ava's continued progress in healing her tiny body.

Jamie and Brayden are trick or treating right now and while it's sad I'm not with them, at least I know that at 8:00 p.m. I'll be feeding Ava another bottle. I would like to thank Jamie for all he's done over the last five weeks for our family. I miss Brayden so much but I know you are taking good care of him, Jame. You're a great father and that's why he adores you so much. Even when you're not here, I hear your voice of reason and it calms me. On Monday night when the girls were here I was freaking out because Ava's SATs went a little haywire and they needed to sedate her. It reminded me of the last time when she had to go back to the ventilator. I was crying and sure that her blood gases would look bad. As I was getting all upset I said to Robyn and Jenny that you would have been so mad at me if you were here. I was getting all upset before we even knew the results. And of course the midnight blood gases turned out to be fine. I miss you being here to console me when I'm hysterical. I can't wait to see you and Bray this weekend!

Many thanks to Erin for the gifts you sent this weekend. We love the U of M shoes and slippers. Thanks again,Sara for the basket of goodies. I'm surprised I haven't gained 20 pounds from all the junk I'm eating. Chrissy, thanks for the beautiful blanket you made. Jeff and Charissa, it was so nice of you to send baby and big brother gifts. I can't wait to play the games with Brayden. Thank you Grandma and Grandpa for the sweet gifts. I love the saying on the little trinket box. It reads "To the world you may be only one person, but to one person, you may be the world!" Thank you, Kathy for the delicious goulash you sent with Jenny. Robyn, thank you for the haircut - I was desperate! And a huge thank you to Howard Township Baseball Committee for the gas cards. The generosity of the community has been amazing! We feel extremely blessed to have so much support and caring.

Holding Tight!

Ava continues to do well! She is not currently on any more sedative drips (they discontinued her Ativan today!) I am told that her xrays are looking better each morning. Her blood gases have looked good again today. These are blood tests that are run about every 4 hours or whenever needed. They show her oxygen, carbon dioxide, PH, lactate, potassium, and calcium levels. This lets them know how her body is handling being off the ventilator. They have even started to wean her oxygen pressures. It is so hard to get excited because you never know what tomorrow might bring. But so far, so good.

As you know I went home today for Brayden's Halloween party at First Presbyterian Preschool. We had fun at the party. (It's amazing to me the control that Mrs. Timm and Mrs. Phillips have of 20 three year olds! They all know the routine and everything runs so smoothly!) It was nice to get out of the hospital and focus on just Brayden for awhile. I wasn't totally relaxed, however, about being so far away from Ava. I'm sure you're totally shocked by this since I'm typically such a relaxed person, yah right. After a few reassuring calls to Ava's nurse, Cheryl, I was able to enjoy myself. Dad and Fran were also with Ava all day which made me feel better.

So all was well until it was time to say goodbye to Brayden again. These goodbyes are just killing us! I had a very emotional ride back to Ann Arbor as I thought of being away from him for three more days. I feel like I am missing out on so much with him. Like tomorrow night will be difficult because I am missing Trick-or-Treating with him. But even the bedtime stories and kisses each night. So far we've managed to find multiple copies of a few books so I can read him a bedtime story from here while he is looking at the pictures at home. That makes me feel a bit more connected at bedtime. So these are the things that I'm feeling sad and guilty about all the way back to U of M.

As soon as I walked into Ava's hospital room, however, Cheryl (Ava's outstanding nurse) pulls out the crib, slides up a rocking chair, and lets me hold Ava. I haven't done this since she was reintubated last Monday! It was wonderful! I held her for two and a half hours and she was awake the entire time. She just looked up at me with her big blue eyes! She was so content in my arms. That was EXACTLY what I needed. That little baby girl gives ME strength to get through this. Who is suppose to be taking care of who anyway? She put it all back in perspective for me. Thank God for my Ava!

On a sad note: Candais's baby, Ke'Myiah was put back on the ventilator and is back in the ICU unit again. She was having trouble on the oxygen because of a procedure she had done. My heart aches for them because I know how difficult it is to slide backwards. Please pray that Ava AND Ke'Myiah can stay strong and continue to make progress.

As always, thanks for listening and for your prayers! Please continue saying them! Kisses and hugs goodnight to both of my sweet babies!

Extubated Again!

Just a quick update because things have been incredibly busy. Ava is doing well. She was extubated today and her sats and blood gases are looking great. She is not even on C-PAP this time. They put her right on the high flow cannula. Please just pray that she does well through the night and over the next few days so we can stay off the ventilator.

My boys went home yesterday and it was very difficult. If Ava can be tough, so can I. I miss them tremendously. I will see Brayden tomorrow as I am going home for a few hours for Brayden's preschool Halloween party. Then I will turn right back around and come back to Ann Arbor. I will be nervous to leave but need to go enjoy a fun day with Brayden. He is looking forward to it. My dad and Fran will stay here at the hospital with Ava and she will have her primary nurse, Cheryl. This makes me feel much more secure about leaving. I know I can call whenever I need to for an update.

My wonderful girlfriends, Jenny and Robyn came last night and stayed with me. They are staying again tonight too. They have been cleaning for me, cooking for me, doing laundry, etc. But most of all they have given me company and support during a tough time. Thanks so much girls! I love you guys!

I owe so many other people "thank yous" but will have to do it tomorrow because I'm anxious to get back to see Ava. I also need to get to bed early because I need to be on the road by 5:30 a.m.tomorrow. Happy Birthday Tracy! Thanks everyone for all of your love, support and prayers!

Happy Birthday Ava!

Ava is four weeks old today! She has done very well the last few days in terms of reducing the infection and taking fluid off. They have also weaned a lot of her ventilator settings and she has tolerated that well. The U of M staff did an ECHO yesterday and the "fatty fluid" that had built up in the pocket around her lung is very little. (Remember that is why she is on Portigen formula instead of breastmilk?) It will still be at least four more weeks before she can go back to breastmilk, though. The cardiologists actually said "Ava is just having a great day" during rounds yesterday. Believe me, they are very stingy with the positive news around this place. We cherish any piece of good news we get.

So right now the plan is to let her rest for a few more days. If things continue to go well with the ventilator settings, they may start sprinting her (taking her off the ventilator for one hour at a time) tomorrow or Monday. Extubation would come next. I am very nervous about how she'll do because it's very hard to take steps backwards. Praying it goes well this time! Also praying that she not be extubated on Tuesday as I may come home for a few hours to attend Brayden's very first preschool party.

Speaking of Brayden, I took him to the ER yesterday and he has croup. They gave him a breathing treatment and a steroid to help clear his chest. He no longer has a fever but he still has a terrible barking cough. His little voice is also very quiet and raspy. He has no appetite and only has spurts of energy. We are keeping him at Ronald McDonald house and trying to get him to rest as much as possible. I hope he is feeling better by Sunday evening when he and Jamie attempt to go home again!

Brayden wants me to say that he loves Ava. He misses seeing her but looks at her pictures on this blog often.

Another tribute to Ava's nurse Cheryl: She read in our blog that Brayden was sick so she showed up yesterday with three DVDs from her kids' collection for us to borrow. She also showed me a very hopeful video online. It was on YouTube under "Hearts of Hope" if anyone wants to see it. It shows kids with congenital heart defects that have survived surgeries and are now living life to its fullest. We see so much pain and devestation from suffering families at the hospital. It was nice to see the children that have overcome the obstacles. Cheryl knows that we need to hang onto every ounce of hope that Ava will make it through this. Thank you so much Cheryl, we feel blessed to have you caring for our daughter.

Candais and her baby may get to go home next week. HOORAY! Thank you for all of your prayers. Jason Steven had laproscopic surgery on his gallbladder this week. He developed an infection but should be home from the hospital by now. We are thinking of you, Jason and hope that you are healing nicely. Praying for Troy Meek and family as they go for a consultation at IU on Friday. Your family is in our hearts during this difficult time.

Quick Update

Ava is doing fine. They did find some bacteria on her cultures and are diagnosing her with pneumonia. They will treat the infection for 14 days with antibiotics. They are also putting her back on Lasix (a diuretic to make her urinate). This will help get the fluid off. Once the infection is taken care of and some of the fluid has been taken off (which is also making her lungs "wet" and restricting their function) they will try to wean her ventilator settings. Then they will try to extubate her again. They are in no hurry but are simply waiting until she has recovered and the time is right. They do not want another failed attempt (nore do we!)

I love my husband dearly but he seriously needs to proofread before he posts a blog! As he mentioned, Brayden is also sick. I have been trying to be back and forth all day to be there for both of my sick kids. There just is not enough of me to go around! His temperature this evening was not as high and we are hoping it's just a cold. However, I'll try to get him to a doctor here in the area if he still has a fever tomorrow. They say God only gives you what you can handle. I say God has a little too much faith in me!

Thank you, Jenny for dinner and Brayden's gifts. I am so glad you'll be here with me next week when Jamie attempts to go home again! Thank you Gretchen for the card you sent and the Pizza Hut gift card which Jamie and Brayden will use next week. Happy Birthday to Dan Podjan (my stepdad) today!

Praying for our two sick children to get better! Also, still keeping Jason Steven and Troy Meek's family in our prayers. We are wishing both of you health and healing.

sick day at Ronald McDonald's

Today Ava seems to be doing better from what Brayden and I hear. Jamie reports that she does have a bacteria infection. What this means I'm not fro sure. Brayden and I have been over to see her today or hear anything from the doctors since we both are sick. Brayden ran a temperature of 103.6 earlier so we stayed in our room all day. The only thing we really came out of our room for was the home cooked meal by Jenny Johnson. It was delicious, so thank you Jenny. Brayden also thanks you again for the Batman computer and the coloring book again.

For some reason I think I'm supposed to mention Heather. I don't know why but I did. Also for the "doll" in the family, I Love You. You know who you are big brother.

Sorry I don't have anything to report, but maybe when Jamie gets back she can report more. If everybody can see all the green "the's" sorry. I don't know how or why they are like this and I don't now how to get rid of it. If you don't see them then nevermind?

Thanks again Jenny for everything today.

Life's Rainbows

Ava is doing okay today. They took her chest drainage tube out this morning (finally). Ava is retaining a lot of fluid again but they have increased her diuretics to help her urinate more. She is back on Portigen (the low fat formula) at 50cc every 3 hours and 24 calories. She is tolerating this well so they will take her off the TPN and lipids tonight.

They did an ECHO today and ruled out the possibility of damage to her diaphragm because it showed normal movement during the test. They will continue to keep an eye on the possible pneumonia but I don't think they're convinced that is what caused the fever/infection on Monday. Nothing has shown up on her cultures and her white blood cell count is within a normal range (5.9 down from 9.75 yesterday). This leaves them still searching for answers about the low pressure to her lungs which put her back on the ventilator. Spoke to Dr. Hirsh (Ava's surgeon) today and she did not seem majorly convinced that the vocal chords were the cause of these issues either. She said that babies that have that kind of damage fail earlier than Ava did to be off the ventilator. She says that breathing on her own is a lot of work especially since she's never done it without their support. We just have to wait until her infection is completely gone and she is weaned down on the ventilator pressure a bit to try it again. We are just praying that it goes well next time and that they are able to determine what's going wrong.

Fran and Carol Eull visited today. Of course "Granny Fran" brought gifts for everyone. We are now all sporting a rubber bracelet which reads "GO BLUE for Mott" to support our little angel. As if we weren't already huge U of M fans! Thanks Fran for all the goodies - I love the blanket with the kids names on it! Thank you Carol for offering to be here whenever we need you.

We tried to persuade Brayden to go home to Aunt Heather's for a couple of days to get out of the hospital for a while. He has now been here for twelve days. While he never complains and he is very well behaved, we feel sorry for him spending his days in a hospital. He did not want to go, though. After he cried a few tears and said that he wanted to go to bed with me tonight (to "shnuggle" as he says) we kept him with us. I am torn between what he needs most. Is it more important for him to have a sense of normalcy or to be with his parents? He brings us so many smiles throughout the day. Last night we were all giggling as we played follow the leader out of the hospital. I'm sure we looked like idiots as we turned in circles, sat on benches, walked backwards, etc. But as Brayden tried to catch his breath from laughing so hard, I really didn't care about the crazy looks people were giving us. It is these lighthearted moments that we all need right now!

Thank you, Emilee Lake, for another home cooked meal. We had frozen your soup and just ate it tonight. It was delicious! Hoping that Jason Steven's surgery went well today and praying for his quick recovery.

Leaving you with a new quote that is on the window at Mott. Under a picture of a rainbow it says "It takes both sun and rain to make life's rainbows!" Please continue to pray for our little rainbow!

One Step Forward, Two Steps Back

As Jamie posted last night, yesterday was not a good day for us here at U of M. Ava developed a fever, and then all hell broke loose. She was having a very difficult time breathing and her abdomen was retracting as she struggled. She looked awful! All of the color left her face and her little eyes looked terribly sick. They tried her back on C-PAP but she still struggled with getting enough oxygen. Finally they intubated her again (put her back on the ventilator). She now looks much more comfortable and they have her on antibiotics as they try to figure out what happened. They are doing cultures to determine if she has pneumonia or another infection but they think another issue was restricting her breathing. They have talked about checking out her diaphragm to see if there is any damage there. Apparently if the nerves were damaged during surgery one diaphragm can get stuck shut (not being able to expand). This could be repaired with surgery and a few stitches, apparently. There is also the problem of her pulmonary artery which they knew would need to be repaired in several weeks. Could this be another cause of the poor oxygen pressure to the lungs? As one father said to us "Even when things are looking good, you're always wondering when the other shoe will drop." We have had many pairs of shoes make an awful lot of racket!

For those of you wondering about the scope they were suppose to do on Ava's vocal chords/voice box, we still have no answers. They told us yesterday that they are unable to do the test because they need Ava to come to them for it and she in not able to leave the ICU Unit yet. We did speak with the ear, nose and throat doctor and he said there is usually some way to repair the damage if her vocal chords were injured. However, the cardiologist just tonight said that damage to her vocal chords may also be the cause of the poor oxygen in her lungs. They hope to take a closer look, but cannot until she is off the ventilator. And so, for now, all we can do is watch and wait and pray a whole lot each day!

So it was a rough day yesterday. And on top of everything we all said a very emotional goodbye as Jamie and Brayden prepared to go home. As you know, they never made it. Boy, was I pleasantly surprised when my boys walked back into Ava's hospital room a few hours after they left for home. Thank you, thank you, Universal for allowing Jamie to be here with our daughter as we try to get her stronger. It is reassuring to know that you understand and we don't have to worry about his position.

Others to thank (there seem to be so many): Thanks to Lisa as we prepare to eat another home cooked meal. Thank you Jenny for your comfort and support last night when things were extremely rough! Thank you Randy for picking up medicine for the dogs today. Thanks to the Kulwicki's for the beautiful baby girl outfits they sent this weekend. Thank you Linda and Boyd Timm for your help and understanding during this difficult time. Thanks Mom and Dad Zimmerman for taking care of the dogs this week. And Kelly Best, your card came to me yesterday at the hospital as Ava was being intubated again. Your words of encouragement touched my heart at just the right moment. Thank you too, Cheryl, Amy and Jess (awesome nurses at U of M) for your outstanding commitment to our little girl's health and healing. We feel so at ease when we know one of you three is taking care of her. Thanks to everyone for all of your thoughts and prayers! Thank you, Heather, for being there for me always, day or night! I know that if I need you, you're always just a phone call/short car ride away. I love you, big sister!

Praying for healing and strength to Ava. (bbbbbbbbbbbbbbbbBBBBBBBBBBB BBBBBBBBBBBBBBB BBBB BBBBBBBBBBB Brayden pressing B again for his name!) Also, strength and courage to get our whole family through each day. Praying for knowledge to all of Ava's doctors and nurses so that they can make the best decisions about her care. Please also pray for Jason Steven as he goes through gallbladder surgery today. We hope he has a speedy recovery! As he was anticipating surgery he was more worried about our dogs than anything. The entire Steven family is so giving and caring! We were told today (as if we didn't already know) that we are still in for a long, tough road. Praying that the road doesn't get too bumpy!

U-Turn on I94

1st off I need to clear up that Jamie did not give Brayden's favorite nurse Ava's blog site. Amy looked it up on her own. That's the kind of nurses U of M has here, and that's why we love her because even when she's not making our little girl better she still thinking about her. Thank you Amy!!

Now, Jamie can fill in the blanks or maybe even Amy. Ava took a few steps backwards today. We are not sure (at least I'm not) why though. Anyways her heartbeat was keeping in the upper 200 regularly and her breath-rate was staying in the upper 90's lower 100's. (that is a minute) Her blood pressure wasn't really effected by this though. She started turning pretty pale along with this. The nurse (Bob the Builder as Brayden would say because his name was Bob) found out she had a small fever but was a little nervous himself as he said. Anyways they tried the C-PAP again and it wasn't working so they had to go back to the tube in the mouth. (If I knew what it was called I would say but I don't.) So she is now sleeping like a baby should be after they gave her some drugs.

By the way if you can't tell I did not leave. Brayden and I tried to but we only got about 50 miles down I94 and had to turn around. It was too hard for us. Brayden was so happy to come back to see his little sister and mommy and I have to say I never felt so happy to come to a hospital in my life. I do have to thank Jenny Johnson for coming up and visiting. She was going to stay a night with Jamie until Brayden and I surprised her.

I would also like to thank Rolf Nelson and Universal Forest Products for being so understanding at a time like this. It sure makes things easier when your boss says to take care of whats most important 1st and to not worry about work, your job will always be here when things get better.

By the way, Brayden now has a crush on Jenny also. Sorry to little buddy Jamison for me and his cousin missing his birthday party tomorrow at Poppy's house.

Last post from me

OK, now that Jamie has given one of our favorite nurses Ava's blog site, I really do need to make this my last post. (I don't want to make her feel any more sorry for our family than she does already) By the way her name is Amy and Bray keeps calling her Ava's doctor and we think he has a small crush on her because she's the one he always talks about.

I finally got to hold Ava again, which made me feel a lot better since Bray and I are leaving tomorrow. I think she is making some noises when she breathes but Jamie just says it's her breathing. Whatever, I hear her saying something. I think she says "I Love you daddy" but maybe I am hearing things. Oh well, I can believe what ever I want. And after I post this Jamie can't take it away. Sorry, random thought.

Ava is getting better though. I don't know how many of you know this or not but my little girl has her own vibrator. That's right, she's taking Viagra and she's got her own vibrator. What else could I ask for in a 3 week old girl? Maybe a boyfriend, why not she's already done more things in her life than me. I don't really know how that correlates to anything but it sounded good in my head.

Anyways pray for my girls now. Sorry to double the burden up but now I have Jamie to pray for too. Thanks for everything that everyone has done so far. It's time to go eat some chicken casserole.

Thank god for spell check!!!!!!!!!!

Even More to Overcome!

So they took Ava off of C-PAP Saturday afternoon. She is doing "okay" on the high flow cannula (oxygen tube in her nose). The doctor says she's "borderline" and may need to go back to C-PAP if her blood gases start to look worse. Right now they are going to ride it out to see how she does.

Ava has been off of the ventilator/breathing tube for a week now. Yesterday we started to inquire about her not having a "voice". (When she cries, hiccups, coughs, etc. no noise comes out.) At first they told us this was "normal" because the breathing tube went through her voice box and that eventually she would make very hoarse sounds. She still hasn't made many sounds. Now we find out that it's possible that there was some damage caused to the tissue of her vocal chords during surgery or the ventilator tube. Tomorrow they will do a scope to assess the vocal chords and then we will speak to an ear, nose and throat specialist to find out the results. Depending on the damage, Ava could simply need help from a speech therapist or she could have no voice at all. We are trying to stay positive and hopeful but under the circumstances it's very hard. My little one already has so much to overcome during the course of her lifetime. We are praying for results tomorrow that are not beyond repair. Please pray for strength in healing little Ava and strength to us to handle all of these "hurdles".

I have held Ava several times now and it feels wonderful. It's hard to believe when I'm holding her and looking into her beautiful face that she has had to struggle every day of her short life. She looks so perfect to me.

Jamie and Brayden will now be coming home on Monday after we know the results of the scope. They will come back Friday night. I am praying for strength for all of us to get through the week without each other.

Candais's baby is doing well and may go to the Moderate Care Unit in the next few days. Her mother was unable to come this weekend because of finances and work schedules. We have made reservations for her boyfriend to come tomorrow by bus so she doesn't have to be here alone. Thank you Erin for helping us schedule that ticket online and to all who have been keeping them in your prayers.

Michelle and Jason Asmus sent Ava the cutest pair of tiny boxing gloves. They are so adorable! She said she thought my little fighter needed a pair. They are laying next to her on her hospital bed. We have taken some pictures and will be posting them soon. Lisa (a friend of Heather's from Wings) sent us several homemade meals. Thank you so much! We can't wait to try them tonight!

I will try to continue to update these posts this week but Jamie will be taking his laptop back to work with him on Tuesday. There is a place on the 8th floor of the hospital where I can access the internet, though. They are only open until 7:00 p.m. so I may not have time to post daily. Thanks for thinking of our family and holding us close to your hearts! As always, we need all the support we can get right now.

The End of C-PAP - Coming Soon???

Ava continues to get stronger everyday. This morning they took her off morphine. They also discontinued the antibiotics she was on to prevent infection because her white blood cell count had gone down again. They feel she simply had a virus which the antibiotics could not help anyway. Her Foley or catheter was removed this morning so mom gets to change more diapers. Ava is tolerating her feedings well, they have increased the amount of formula and have added extra calories, as well.

Ava's cardiologist believes that she may be ready to come off C-PAP by the end of the weekend. Instead she would go to a high flow oxygen tube in her nose. If Ava continues to progress and does well off C-PAP they think she may be able to leave the ICU unit sometime next week. Way to go Ava!! Please pray for her continual slow but steady progress.

We will try to post an update tomorrow but don't be too disappointed if we don't get to it. Billy and Heather will be in town and we usually stay with them at the hotel so Bray can play with his cousins and swim. This makes it more difficult to post a blog at the hotel. (Or maybe Heather could write it!) Jamie says this will never happen if he can't write anymore either.

When Brayden was asked what he would like to say to everyone he said "I love them."

As always we feel extremely blessed to have so many wonderful people in our lives. Being here and going through this difficult time makes us so grateful for what we have! Thank God for our two beautiful children!

Cherishing Every Moment!

Ava is doing well. Her white blood cell count went down some but is not within a normal range yet. Her blood and urine cultures are testing negative for an infection but they said that it could take 72 hours for it to show up. They are encouraged that her white blood cell count has gone down, that she has no fever, and that she seems to be doing well. She has another blood test at 4:00 a.m. to test for this again. Praying for a decrease in white blood cells again tomorrow morning.

They have turned down the pressure again on C-PAP (Ava's little oxygen mask). They continue to wean her off Dopamine and are planning on discontinuing her Morphine tomorrow. They also started feeding Ava again. She is now on a formula that has very low fat content. It's not the same as having my breast milk, but at least it's a step forward.

I FINALLY got to hold Ava today! It has been 16 long days since I've had my beautiful girl in my arms. It was awesome. For all those mothers out there: do not take your children for granted! Hold them close to your heart. Cherish each and every moment that you have with them. Cherish every kiss, hug, diaper change, bath, feeding, smile, cry, hand hold, etc. These are the moments that I am holding onto each and every day.

Ke'Myiah (Candais's baby) is doing well too. Her chest was closed the day of surgery. They plan to extubate her tomorrow or Saturday (obviously she moves a bit faster than Ava). We have gotten to know Candais a lot more lately. She's been "hanging out" with us often. We are hoping that her mom and boyfriend can make it here this weekend. Until then she knows she has us around if she needs something.

Brayden continues to be a great big brother. I keep expecting him to whine and complain when we go back and forth to the hospital four or more times a day. But he is always just as anxious as we are to see Ava. Jamie and Brayden will probably return home on Sunday. I will miss both of them immensely!

Thank you Howard-Ellis students and staff for the wonderful card. It's amazing that every student was able to sign it! I hope all is well at the school. Hello to all my students in room 9. Thank you everybody for all of your thoughts and prayers! Goodnight!

In Her Own Good Time!

Ava is holding steady. She is still on C-PAP but is doing well. They will continue to wean her pressure and oxygen output on this little oxygen mask that goes over her nose. They already dropped her pressure once today on the C-PAP. The mask is rather pathetic looking! In fact, they call it the elephant mask because it looks like she has a long trunk coming from her nose. I will try to post some new pictures tomorrow.

Ava's blood pressure, oxygen levels, and blood gases are all looking good. They started her on an antibiotic today because her white blood cells were high and they were concerned about infection. They are less concerned now because everything went well today. They will check the white blood cell count again tomorrow at 4:00 a.m. to see if the medication has helped. Just praying they have come down into a normal range.

Ava also started a new anti-arrhythmic medication because her heartbeats per minute were bouncing all over the place the last few days. You may remember they tried to do this on Saturday but she had an allergic reaction to the medication. We found out yesterday that the fluid in her chest that was restricting her left lung is a "fatty" fluid. Because of this she will have to be on a special formula with no fat content. (She's not on feedings anyway while she's on C-PAP.) She may have to be on this formula for a long time. This is disappointing to me because I was so happy when she finally got my breastmilk. Just hoping she will be able to have my milk again someday.

Thank you to Emilee Lake for the delicious home cooked meals she sent. You have no idea how nice it was to eat something other than take-out, delivery, fast food or cafeteria food. Thank you, also, Carol Eull for the muffins and Michelle Asmus for the cookies. We have enjoyed everything you've all sent.

Grandma, Papa, Aunt Tracy and Uncle Mark got here today. They can't believe how good Ava looks (even with her elephant mask!) Molly and Ginger Brawley stopped in and saw Ava but we were at lunch and missed them. Molly said that she calmed her soul and gave her strength to get through a difficult test at U of M. That's the kind of power this little girl has over all of us. She is so precious! She is so fortunate to have so much love from so many people.


Keep praying for our entire family please! Your prayers have been working as Ava SLOWLY progresses. The surgeon (Dr. Hirsh) told us today that Ava's doing well but getting out of ICU and onto a regular floor is going to take more time than expected. Preparing myself to be here for many more weeks is not easy. In the end, when we get to take our little girl home, though, it will all be worth it!

Short and Sweet

Jamie will appreciate this blog because he says my postings are way too long. I am exhausted and it's late again so this will be brief. bbbbbbbbbbbbbbbb That was Brayden pushing the "B" for his name.

Getting to the point! Ava is doing fairly well. They needed to put a drainage tube back in her chest because of the fluid build up around her left lung. This was restricting it from expanding to make good deep breaths and this was interfering with her C-PAP (little face mask providing oxygen). They thought she would probably have to go back on the ventilator/breathing tube because she was struggling. They also thought that the sedation she was given would slow everything down so that she would need more assistance to breathe. They even went as far as to push the ventilator back into the room incase it was needed. This would have been a huge step backwards for her but we knew we could try extubating again in a few days.

Well, little Ava showed her strength once again. As soon as the fluid was drained from her chest and she could expand her lungs better, things started to improve. Her blood gases improved and she is still extubated HOORAY! The C-PAP is the most support that she can receive while off the ventilator and that will be weaned slowly until she has just a small nose tube for oxygen with less pressure needed. Who knows how long this will take. As you all know, Ava does things in her own good time. We are praying for a good night and that she can continue progressing off of the ventilator.

It was so nice to see Dad, Fran, Gram, and Becca and Taner today. I love to show Ava and her progress off to people!

Brayden had a rough day from the time he woke up about going back home with out us. This is the first time that has happened. We kept him here with us because we thought he needed us right now (and of course we need him too)!

For those of you that are joining me in praying for Candice and her baby girl, thanks. Her daughter is doing well. She is getting more comfortable with Jamie and I and has asked for a few small favors. She also went to dinner with us last night and laughed quite a few times at Brayden. I am happy to be here for her!

Okay, so I guess Jamie is right. I do get rather winded in my summary of the day. Thanks for listening and for your prayers!