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!