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!

Another message from me

Ava seems to be doing fine today. She's holding her own and then some. I'm sure her mom will come back tonight and give everyone some long technical explanation, but for me she's not going backwards right now and that's good.



Anyways I just want to say thanks to all who have come and visited and to all that have posted comments. We probably get just as excited as anyone to read what you have to say (especially since theirs no TV in our room) wait a minute, let me rephrase that (THERE'S NO TV IN OUR ROOM) so it's like Christmas to us reading what the outside world is like. Gram got to come up and see her great grand daughter for the 1st time today. It was nice to see the Dalenberg's, especially since we were kept Brayden with us and they brought his buddy Nathon. (sorry if I misspelled it) And it was also nice to have some home cooked meals We all sat down together and ate some mosteroli or however you say it for lunch, so thanks again Emilee. Sorry we had to give you such a hard time with it, but you can come here and say "I made you some delicious food but I forgot it after I drove back around my house twice" HA HA. Now that's funny.

Anyways thank you everybody, it does make things a little easier for us!!

Ava's on Viagra! What?

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

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

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

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

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

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

A lot to be thankful for

Sorry to those dedicated bloggers that are frustrated with us for not posting an update last night. Brayden was here and we wanted to give him our undivided attention. Believe me we've already heard about it from several people.

So, about Ava's progress... She is doing well. Yesterday her heart rate was all over the place. Meaning that it would bounce from the 150 range to the 230 range within a matter of seconds. This was only moderately concerning to the cardiac staff. They knew that if it continued they could just put her on a rhythmic medication to regulate it if they needed to. We are learning that there is a drug to fix almost everything at U of M. However, when they went to give it to Ava she broke out in a rash and they assumed she was allergic. A little Benadryl took care of the rash and they decided to just watch the heart rate overnight. It seems that with Ava she often just needs more time of "watching and waiting". This morning her heart rate was back to normal! What do you know?

They also "sprinted" her (took her off the ventilator) yesterday four different times for an hour at a time. They also did it twice today. She did very well so they decided to extubate her (take her off the ventilator/breathing tube completely. For those of you who read my husband's posting that is what he was talking about, I hope it is now more clear. Anyway, they warned us that many kids don't do well with this and not to be surprised if she ends up right back on the ventilator. This can be because it is too much work and she is not ready or because her throat is irritated so much from the tube being there for so long that it can swell and cause bad oxygen flow to and from the throat. Well, they put a high oxygen tube in Ava's nose to help support her. She was still in control of all her breaths and had to do all the work but oxygen was being shot into her nose. She hated this. It was very confusing to her, you could tell. She wasn't sure what to do with her mouth or her nose. Her blood gas afterwards was not good. They were discouraged and thought for sure she'd go right back on the breathing tube. There was one more thing to try. It is called C-PAP. She has a little oxygen mask on her nose which not only shoots oxygen through her nose but also shoots pressure to expand the lungs too. She was doing well on this when we left at 10:00. Her blood gas looked "stellar" the respiratory therapist reported.

So this is where we will stay for a few days. They think that getting some more fluid off of her will help her lungs expand better so that she could go on high flow or, better yet, normal flow of oxygen. They will probably put her on a diuretic again to reduce some of the fluid. She's been urinating very well but is still carrying some puffiness in her chest and abdomen. This will keep us in ICU longer than expected but I guess that's not necessarily a terrible thing. We love the nurses over there and she gets more one on one care. We knew this was the next big hurdle.

A HUGE THANK YOU to my Howard-Ellis family for all of the wonderful gifts, food, supplies, gift cards, money, etc. Your overwhelming generosity to our entire family is so greatly appreciated. I feel so incredibly fortunate to work with such kind and caring people. We have already, eaten, worn, and used many of the items. The gifts are so uplifting which is just what we needed right now. It was like Christmas as we opened everything in the hotel room on Saturday! Even Brayden had several "big brother" gifts to open. Ava is so lucky to already have the love and support of so many people that haven't even met her yet.

Speaking of love and support: I gave a young lady (maybe 18-20 years old) a ride over to the hospital today from the Ronald McDonald House so she wouldn't have to walk. She had a baby girl by c-section ten days ago (so she's still healing) and her baby will have heart surgery tomorrow. She is from Ohio and is here by herself! My heart ached for her as I know that this experience is so incredibly difficult even with tons of support from family and friends. Of course I gave her our room number and told her to call if there was anything we could do to help her. I am asking that you all keep her baby daughter in your prayers along with Ava. I'm not sure of her name because I forgot to ask, but God will know.

Brayden is here and we are so glad. Tonight as I was crying on the phone to Heather (I sometimes just need a release once in a while) he told me "Big girls don't cry". We immediately all started laughing. He also likes to sing the phrase "I want to be a rock star" over and over again. Okay, so maybe he's spending a little too much time with Aunt Heather and his cousins (HA, HA)

Thank you Emilee, Janelle and Sara for visiting today and letting me show off my sweet Ava. It was so nice to see the three of you.

Jamie and I feel so incredibly lucky these days to have two beautiful children, a wonderful family, great friends, and so many other caring people in our lives. We appreciate all of your prayers, kindness, and support each and every day.

Ava's update

Since we didn't get a chance to update her progress yesterday, I'll give you a short one now and later tonight I'll let her mom recap it. Remember this is in my words (not the doctor's or her mom's).

My little girl is doing wonderful!!! As we speak (or at least me, since your not really speaking, your just reading) she is getting some kind of excabation. OK, I don't know what the word is or even how to pronounce it, but what it means is she is having the tube that's in her mouth removed. If she does OK on her own then that's one less hurdle to deal with. If she doesn't do OK then they will have to put it back in and try again in a couple days.

So that's the update in my words. It won't be long now before we can come home as a family.

By the way, Bray is sleeping next to me right now and he is snoring. But I don't mind because he's here with us.

Brayden's note to Ava

This is Brayden's note to Ava. It say's "I Love Ava"




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MRI Results

Ava's MRI results showed that the narrowed pulmonary artery on the left side of her heart was only allowing her left lung to do 20% of the work because of the low blood flow. Obviously that would mean that her right lung was performing at 80%. The cardiologist explained that a "normal" heart would be sending 40% to the left lung and 60% to the right. Therefore, Ava (at this time) is not in need of another bypass surgery. HOORAY! They are not in any rush to repair the problem right away until she has recovered a bit from her first bypass. In four to six weeks they plan to do a catheretization of the left pulmonary artery using a balloon or a stent. They assured us that this is a pretty simple procedure and that she would only need to stay in the hospital a few days. It is possible that we could take her home for a few weeks and then return for this procedure. Let's hope and pray that she will continue to progress and will be home by then!

Ava "sprinted" (came off her breathing/oxygen tube) once last night for an hour. She did beautifully. Because of her rough day in the MRI they did not try it again today. They plan to "sprint" her again tomorrow a few times. The cardiologist believes that she will be fully extibated (off the breathing/oxygen tube) by the end of the weekend. Thanking God again for these small positive steps she has taken!

On a maternal note: Ava is still tolerating breastmilk well. We also got to change her poopy diaper and it felt so good to be involved in her care. It is so hard not being able to hold her but we are hoping that the time will soon come. She would have to be completely off her breathing tube and all of her blood pressure medications (which they are slowly weaning now).

On the home front: We'd like to thank Sara Grishaber and her brother Jason for helping take care of the house and dogs while we are here at U of M. Brayden comes tomorrow and we can't wait to see him. He went over to our house tonight and got a little emotional on the phone with me. This is the first time he has really broken down. He just said that he misses me and wanted to see me right now. He also said that he was a little bit sad. It breaks my heart not seeing him every day and not tucking him every night.

Happy that Troy Meek's surgery went well. Still praying for the family. As always, thanks everyone, your positive support and prayers mean the world to us right now!

A different note

I would just like to say THANK YOU to my best friend. Thank you Jamie!!! Thank you in so many ways but most of all for my 2 beautiful children

Another Day of Progress for Ava!

Walked into Ava's hospital room this morning and the last two drainage tubes had been taken from her chest. It's so nice to see a little chest and abdomen instead of so many tubes. They continue to wean her blood pressure medications, as well. The most exciting part of the day for mom was when she started receiving my breast milk through a feeding tube. I finally feel like I am helping my little one in some way. Right now she is only receiving 1 cc an hour but she is tolerating it well. Tonight they plan to try to "sprint" her. This means to turn off the breathing tube for one hour at a time (as long as she can tolerate it). They will do this three times over the course of 24 hours.

Dr. Hirsh (Ava's surgeon) came in and called her "Little Miss Sassy Pants" because they were able to remove her chest tubes. She is happy with Ava's "slow but steady" progress and is hoping that the MRI tomorrow will not determine a need for another major surgery. She feels that Ava would not be doing as well as she is if her pulmonary artery was severely defected. It is possible, however, that they would find an artery that needed to be repaired through surgery. We will not know the results of the MRI until late Friday or early Saturday. Please pray for Ava tomorrow and for good results on her MRI.

The Genetics Counselors came to speak to us about DiGeorge Syndrome. They answered some of our questions and will be doing more tests on Ava when she gets out of ICU and into a regular unit. They gave us many pages of information to read of all the things that could go wrong for a child with this syndrome. We were too overwhelmed to read any of it. I know it would just cause us more stress and worries right now. This made for another emotional, exhausting day even with all of Ava's progress.

We are greatly missing our Brayden Lee and look forward to seeing him on Saturday. We are amazed at how well he is handling all of this. He's much tougher than we've ever given him credit for. He chose to go back to school today to see all of his friends. We were concerned that he would be reluctant to go back but once again Bray surprised us. He was thrilled tonight to have received a present on Jamison's birthday. Thank you so much Auntie for making him feel so special today too.

Wanted to thank Molly Brawley for her humor on her blog site. Jamie and I laughed at her checkbook balancing story. It was a much needed release as we haven't laughed out loud in almost two weeks.

We are praying for Troy Meek and family as we just found out he underwent surgery today for testicular cancer. Please keep them in your thoughts and prayers as well.

Courage is not always big and loud, sometimes it's small and quiet

This is an inspirational quote that can be seen on the window of the PTCU unit where Ava is. Today was a pretty good day for Ava, we walked into her room this morning and they had removed her 2 chest drainage tubes and took out her dialysis tube. They have been weaning her blood pressure medications (she is now down to 2 instead of 3) and some of her breathing support so that her lungs can function more on their own. We never thought that seeing our sweet little girl on only 12 medications would be a day of victory. They are still concerned about her left pulmonary artery which they believe could be smaller than the right. This will lead to an MRI on Friday at 11:00 to determine what steps to take next. This could mean a simple catheter procedure to open the narrowed artery. It also could mean another bypass surgery for Ava. This would put her back to square one. Please pray for good MRI results on Friday. If she needs one of these procedures the doctors think it would take place early next week.

Happy birthday to Jamison Lee on Thursday the 11th. We miss him and love him dearly. Hugs and Kisses to Brayden Lee as he's tucked in tonight. We sure miss him but we know he's in good hands with Aunt Heather and Uncle Bill.

Thank you so much to our family for everything they have done so far. We are sure there's more to come that we will need each and everyone of them for. We are especially grateful to Heather and Billy for caring for Brayden just like he's one of their own. Once again thank you all for your prayers and support as our baby Ava fights for her life!!

More to the roller coaster ride!

As many of you already know, Ava's chest was closed today. They thought this might have to be done over the coarse of several days because her breast bone was so far apart (as it was cut open to access her heart during surgery.) She tolerated the procedure well and they were able to completely close her chest. Things were looking great and we were cautiously celebrating this "hurdle" when her heart rate dropped a bit so they did an ECHO of her heart. All looked well from surgery but the left side of her heart looked significantly smaller than the right. Not anything they are majorly worried about at this point but at some point she may need a ballooning or stent put into one of her left arteries. They wouldn't want to do it now because her body (especially her kidneys) are still recovering from all the trauma and fluid build up after surgery. All of this we handled pretty well.
Then we got the news that her DNA test results finally came back and she tested positive for Digeorge Syndrome. At this point we only know that she will need extra calcium, and that she will probably have immune deficiency problems which will make her more susceptible to illness. The doctor also said that these babies usually have developmental delays (ranging from very minor to severe mental retardation). Apparently there is no tests that can be done to determine how severe this syndrome is in Ava. We will just have to wait and see when she starts to hit these developmental milestones. We will know more after we speak to a genetic counselor and they give us more information. We are trying so hard to be positive and strong but are not sure how much more we can endure.
Brayden left today with Grandma and Papa Zimmerman. He will stay a few nights with Aunt Heather and Uncle Billy and then come back for the weekend. He has been amazing through all of this. He adores "his baby" Ava and even cried the first night we had to leave her overnight at the hospital. It has to be extremely difficult for him as well. Please keep Bray in your prayers too, everyone. And thank you God for watching over him on the way home from U of M today when another vehicle ran into Wilma's car. Everyone was fine but Brayden now calls Grandma a "crazy driver".
Thank you so much for all of your thoughts and prayers. We need all the support that we can get. It is guaranteed to be a long, rough road for our entire family. Thanks to Molly and Tracy for getting us started on blogging. One of us will try to update it each night.

Big Brother Brayden

Just want to thank everyone who is thinking of Ava and her family, you have no idea how much your thoughts and prayers mean to all of us. I would also like to send a hug and love to Big Brother Brayden. He has been wonderful through all of this and I am confident in saying that he loves "his baby" just as much or more than anyone. We love you Brayden, you are the best big brother in the world.
Aunt Trace

UPDATE.....Ava is slowly getting better!

I just talked to Grandma Z, she and PaPa are visiting with Ava and are reporting good news!
Let's back up a bit first. This past Saturday Ava required some quite time due to some stress. Aunt Heather reported this morning that the nurses shut down the lights and played some soft music so that Ava could get her stress level down. Grandma reports that it is working! She also reports that they are taking Ava off of dialysis due to a small drop in weight. (She was put on dialysis to help her kidneys along) Ava has also been removed from one of her 10+ machines today!!! Even better than that is Ava's doctor is hoping to close her chest up tomorrow! Now for the best news of all, Grandma reports that Ava is opening her eyes and trying to move her head!!!!!!!!!!!!!!!!! First thought was that this movement was involuntary but this is NOT the case. She is definitely a fighter! So keep praying, she will be home soon!
Aunt Trace loves you Ava!

Trying to keep this up to date

To all who visit: please be patient with me in getting out all new info on Ava. As of now she is stable, opening her eyes (such a wonderful gift) and being loved by her Mommy, Daddy, big brother Brayden and the rest of her family and friends. I will provide as much info as possible in the following days. Please feel free to post any comments or questions. But most of all, keep Ava in your prayers.
Thank you.