Beautiful Lady

Hello friends. Ava has been doing really well. We were watching her incision as it was blister-like and a little red. I called the nurse yesterday morning and she said to try warm compresses on it and if it didn't get any better we would have to come in so they could lance it. (Yikes!) So after 5 times (20 minutes each time) it finally popped on it's own. We were so relieved. It is looking much better. 

Here is what it looked like yesterday.

This morning it looked so much better. We put Antibiotic cream and a band aid on it all night. Again I'm so happy we didn't have to travel to the Children's Hospital. God worked it out right here at home.

You might notice a change on our blog. I redid the banner at the top. She's been through so much and wow so much more has happened. So that meant a new large picture for the center. She looked beautiful today. It was perfect weather for pictures. She choose the one for the blog. I love them all! I think I took around 45 pictures and they all turned out so good. She's the strongest person I know!! I'm so proud of her in so many ways.  She has fought hard and long and I'm so happy she is feeling better.

Last week at this time we were in the hospital. She's been out for five days now. I thank God for His continued healing. We are so blessed to be home! I drive her nuts sometimes because I check on her a lot. I can't help it. The nurse in me can't stop. Before bed I hook her up to the pulse ox machine to see her heart rate and her oxygen saturation. I then take it off. I just want to be sure she's okay.

Something you take for granted is being able to sleep in your own bed. I've missed my bed! My heart goes out to those still in the hospital fighting. If I could give you any advise I'd say, "Live a day at a time.... sometimes you have to live minute to minute but you can do it! Better days are ahead!" Thanks again for all the prayers.

-Terri

Hanging out at Home.

Hey guys. I know I didn't update last night and many people asked me how she was today. She's doing good. I used to say. "No news is good news." So if I don't post that is why. I told Ava I was doing an update and she says..."Why... nothing is happening." She is right.

One thing we are watching is her incision. The spot that was blister-like is getting worse. I sent the nurse a picture late this afternoon but didn't hear back. It looks like it needs to be be drained. Her skin has healed underneath I think that for some reason fluid got underneath. The rest of her belly is healing great.

I asked if I could take a picture of her in her bed and she says... "I'll send you one I took today." She is something else. Here is the one she sent me. The facial expression... ?

We would appreciate the prayers. We have so many prayer warriors. God is surrounding her and I'm so grateful to be home.

I had a breakdown Sunday. I had kept putting my feelings aside at the hospital being strong for Ava. Yes there were a few times I cried with her but mostly I kept cool. I grieved her pain and all she endured the last three weeks. It was had, so hard. I'm doing better today. I felt bad as I should have been so happy she was home and doing so good... however my brain felt the sorrow.

Thanks for checking in. We are so grateful for the support, love and prayers!

-Terri

Home Sweet Home Again

Hello guys. I'm happy to report we are home! This was the very first time I wasn't thrilled to leave the hospital. I wanted reassurance that her bowels will keep working. Ava was ready and she said she felt great. She is eating and going to the bathroom just fine now.

Ava sharing her good news!

Dr. Shilyansky came in to check on her this morning. This amazing man has saved Ava's life more times than we can count. We are so grateful for his knowledge and skills to fix our daughter. I got a picture of them together. He feels closer than a doctor to us... he truly does! Dr. Farber was also there. He's a Fellow and a good one at that. We appreciated everything they both did for Ava. 

These hospital rooms are so beautiful. I took this picture this morning as the Sun was coming up. These large windows make it feel more open and peaceful. I don't think Ava put her phone down ever unless she was sedated or asleep. It drove me a little nuts... but it got us through.

This was a cabinet that we could put our things in and it was also a board we could write on. I sure used it while we were there. I used the other board too. I kept track better than a few of the nurses. Some of the things are funny, like How many Sneezes Ava had per day... others were her daily output to how many times we each won a game. I even wrote the times down when the tv would turn on by itself. Creepy! 

I woke at 5 AM got a shower and started packing things up. Ava was off fluids so we were pretty sure she was going home. I was wanting to stay until 4 days after she started eating food but we all felt that she was doing so well and it was time.

Funny story.. well I guess how you look at it. Back to the packing at 5:30 this morning... I was gathering up things I had two huge bags full of things to take to the car. I was so carefree (Did I just use that word?!) I totally forgot to grab my mask. I went down the hall to the elevators, rode down to first floor the doors opened and all of a sudden it hit me. It felt as if I was naked. (You just don't go without a mask.) I quickly walked to the exit. I felt like there were guns pointed at me... in my mind of course. I was going to get in big trouble... made it to the check in table and plopped my bags down and grabbed a mask on the stand and quickly put it on. The ladies looked at me in disgust. I politely said, "I'm so sorry we have been here a long time and well I just can't remember theses masks all the time." I didn't wait for a response I just left. The panic I felt. Now it seems funny. This is not the first time I forgot my mask. I think I caught myself about 3 times. It was so hard to remember. The thing that made you remember was seeing the staff all armored up. Ali our nurse last night was so nice. We got along so good with her. Our day nurse was Kelly ans both of them were just so funny and you could tell they LOVED their job. Kelly was a comedian and Ali was the sweetest. I wanted to take pictures of them but with this Covid thing I didn't. We will not forget you all.

The elevator has mirrors on the ceiling. I couldn't believe we were actually heading home.

I made a bet with Ava on the 15th that if she walked a lap around the Surgery Unit I would give her a dollar a lap. (10 laps equal one mile says the nurses) I counted 273 steps per lap. Ava was reluctant to take me up on my offer. I really wanted to get her up and moving to get her intestines working... well I paid her when we got home. 84 LAPS= $84.00. I'm so proud of her and SO So happy we are home.

Lexis and Emeline came over and gave Ava a few gifts. Stitch things of course. She is infatuated with Stitch from Lilo and Stitch... she also can say every word and song to Disney's Princess and the Frog. Who knew?! Only Ava!

It was so good to see them. It was really important for Ava to go through this with her sisters even if it was video chatting. It helped calm her and give her something worth living for truly. They have a dog and during her stay more than once I'd bring Willow to her mind. I said you are too important to so many you can't give up. I know it's hard but think about Willow? That got her every time. Emme surprised Ava a few minutes ago and brought Willow over. They both were so happy. My girls are the best. They love each other so deeply. It melts my heart to see them together. A great day, indeed!

Thanks again for your support. God has been so good. We try to dance in the rain.... oh but it's so hard sometimes. Av and I really learned to buckle down, grab the mind game of the tube and attack it. It truly was mind over matter. She got to a really low place but she turned it around. Please continue to pray that Ava's intestines keep working and doing their job. I'm keeping her on a soft diet for a little longer. Have a great night and God Bless!

-Terri

Lazy/Good Day

Hello Ava friends! There is not anything new to report. She's been getting better and better. Dr. Shilyansky came by this morning. Ava was so surprised to see him. She says, "Is that you Dr. Shilyansky? I didn't know if I would see you." She is a character. He was happy with how great she looks and that she was eating and having bowel movements and walking laps. She is a go getter! I'm still not letting her eat too hard of things. She had scrambled eggs, steamed rice and green beans today. She's been drinking a lot more fluid too. They cut her TPN down last night. It was at 45 and her lipids were at 5. So a drastic cut from 90/10. I'm okay with all of it as she is finally pooping good.

This is our 18th day in the hospital. I can't believe we have been here that long. She was on the NG tube suction for 9 days. Seriously I don't know how she endured all of that. God is always helping her... holding her up. I'm so grateful for being able to care for Ava. We have bonded a lot this month. I've gotten to know many things about her. She's a bit crazy but I totally get it. I love her so much! What would I do without her? We've laugh so much. We've had some really tough days but in the end it's precious memories. Did she get furious with me? She did! I understood her anger, she just needed someone to be frustrated with and it just happened to be me. We get told we look a like. She's got spunk this child of mine. I'm super proud of the young lady she has become. We've had really good doctors, nurses and hospital staff. They made our lives bearable. They all listened to my concerns and adjusted things to fit us. This new Children's hospital is so state of the art. We've been blessed!

I made a visual to show the progression of her surgery and the obstruction. She does feel better than she did after surgery with eating and BM now so that is a turn around that makes me feel better, She's on day 3. She started drinking and soft food on Wednesday.

She was tired today so she napped while I did the hospital art project for the patients. They bring in the supplies then you turn the TV to a certain channel and the lady walks you through each step. It was art using tape and crayons. I did a poster of Ava's name. It helped pass the time. I also painted a picture the other day. Painting is an outlet that relaxes me. It takes my mind off stress and puts them in a place where I can create anything.

Her stomach scar still has the red "blister" like thing on it. The doctor was able to drain it a little today just by pushing on it with gauze. Eww! She says it doesn't hurt at all. I wish it would have healed like the rest of it. We will just have to keep a close eye on it. All in all the incision looks great for being 19 days old.

She got her PICC line dressing changed this morning. Kelly our nurse was changing it while talking to Ava about tictok. She didn't even flinch. I showed her Ava's video about being a CDH survivor. She says... "You are a tictok star. Ava was like... ah... no.  

She is allergic to Chlorhexidine (the burn that happened with the IV dressing and chlorhexidine that is on the bend of her right arm.) so they use betadine on her.

Keep the prayers coming and thanks again for checking in on Ava. She appreciates all the support, love and prayers. It's been a rough month and we are praying to just be in the healing stages now. God Bless and have a great night!

-Terri

Mold me and Make me.

Hey guys! We had another good day. We have a hard time finding things to do. Ava would be happy being on her phone all day but I make her do things with me. Today we had molding clay and we took turns trying to figure out what the other was creating... or trying to create! We also did a workbook that was very interesting. It's called Digging Deep. "A Journal for Young People Facing Health Challenges. I highly suggest it. It allows the person to think about their illness in a positive way. It has sections where it talks about your fears, the why's they might ask themselves, the emotions they feel or hide and all kinds of things like friends to dealing with doctors they don't like/agree with what they want to do for them. I read a few things to Ava and we wrote them down. I won't talk about what we discussed because it's very personal. It brought a new perspective to my eyes about how she internalizes things. 

Ava is playing with molding clay.

Ava gave me permission to show her incision. It is healing but I'm watching the red spot in the middle. They say it is not infected but it may have some fluid under it that may or may not come out. The scar going across is from her very first surgery at 14 days old. Then the circle scars are from her g tube and abdominal drain. 

Ava is so embarrassed that I did this but for people that have had an obstruction (or their child has had an obstruction) poop is pretty glorious when you don't see it first a long time. Yes I drew a illustration of her poop! I was so proud, happy, excited and wanted the doctors to see it!!

 (I've taken pictures too but I'll be nice and keep them to myself! Ha ha!

Ava worked on her Stitch, Diamond Art. It is going to be beautiful! I can't wait to see it finished. Such a wonderful gift this was Jennifer and Kennedy! Thanks again.

No nausea... thank the Lord! She poop tonight so that is a great sign!

She started complaining about her back hurting. She said it's felt this way every since she woke up from surgery. The spot she points to is where they placed the patch. Her body may have to get adjusted to it. We tell her she can have pain medicine for it but she declines it.

The doctors think she looks and is doing great. I told them this morning that I was in no hurry to leave. I want to stay and know for sure that her bowels are working. I would rather stay longer than have to go through the pain and the Emergency room fiasco again. It is exhausting and worrisome especially with the Covid-19 virus still spreading. I'm happy that she is doing so good. She told me I was being negative today but I explained to her that... yes it may sound like that but I'm just being extra cautious. They gave her the whole menu but I'm just letting her eat soft and bland foods. If they move through we can go to heavier things. I've been called picky and overbearing... that is okay by me. Sad truth is I've been through this far too many times. Sometimes I feel like residents (doctors learning to be doctors) and some doctors just look at her chart and surmise that this is all we have ever dealt with. It's not. I'm so very thankful I started this blog. When she was born in 2006 we had a "carepage" to keep family and friends updated. When we got home and settled in blogs became popular and I picked it up quickly. I've always wanted to help other parents but never in my mind did I think she/our family would go through ALL these things. I say I wish I didn't know but I do so I might as well be helpful. A mother whose daughter was born with CDH like Ava got a hold of me today. Her daughter and Ava are only days apart. Their stories are similar and oddly she just had surgery on Monday for a bowel obstruction. She's dealing with the NG tube and so many more things that Ava just got through. Please keep them in your prayers. Thirteen is such a hard age. They aren't kids anymore and they think they have the world figured out but when bad medical flareups happen they have so much confusion in their heads. My heart was sad that she too was going through more issues. We discussed the girls talking on the phone once her daughter felt better. Ava just told me the other day that she thinks the reason she goes through these things are to help other people. That is such a mature way of thinking. *Oh and my point I almost forgot. I'm so glad I blog. My memory is not that good so writing everything down helps to keep things straight and right. Plus I can look back on my pictures and see things even more clearly.

Ava got a very cute lion and balloon from Walmart Distribution Center. It was very nice of them.

Thanks for taking tine out of your busy lives to check in on Ava. She is awaiting the day we will go home. This is the first hospital stay where I'm okay with staying longer. I pray that God will make a way for us to go home. She needs healing in her intestines. I ask Him to stop the scar tissue and open up and let things through. I know and believe He can do this!! Thanks for joining us in prayer. God hears our cries and He listens. We will continue to look toward Him and live in today!

God Bless You!

-Terri

Bon Appetit!

Hello friends and family. Ava has been doing SO well. Her and I have been having such a good time together. I can't remember the last time I laughed and laughed over stuff that makes no sense. She says I embarrass her and I love it! Live today and I do! They haven't told us to be quite yet, so that's good, right? She also sleeps really good at night. I sleep too!

Dr. Farber rounded this morning asked Ava how she was...she said "good." She is feeling like her old self. No pain and no nausea. She is tolerating liquids just fine. Dr. Carlisle came by late morning to check on Ava. She was happy she was doing so well. We spoke in the hall and they were ready to let Ava eat. I voiced my concern to go very slowly. She agreed. Ava smiled when I told her she would be able to eat today. (They gave her no diet restrictions.) I told her only soft foods for now until we know things are going through without issues. I had to show you the video of her first bite. It had been 11 days since she last ate. Scrambled Eggs... Bon Appetit, Ava!!

Silly girl... I'm so thankful for her patience during all of this. I'm so proud of her. She has learned so much from this month. Brian and I remembered the hardships of surgery. She was too small and went in not knowing what was going to happen. It was harder than she ever thought possible.

She says, "Goodnight Everyone!" 

Oh... and she wants you all to know she worked really hard and pooped 4 times today!!

Thanks for checking in on Ava. She certainly keeps us guessing and this time is no different. Brian came up after work tonight and she was so happy to see him. She hugged him as soon as he got in the door.  She said. "DAD!". It was good to see him. I'm a little sad he couldn't stay at the hospital with us the whole time but we both agreed that Ava was on the mend and it was okay for him to go back.

We appreciate all the love, support and the prayers. Keep praying... God is in control and I'm just here for the ride. Did I mention, I don't enjoy roller coasters for the record? I'll leave you with a wonderful Bible verse that leaves me feeling blessed. God Bless!

-Terri

Casting all your cares upon Him, for He cares for you. 

-1 Peter 5:7

Happy Tears

Hello Friends.  Ava got the best news ever today. The doctors came in and looked her over and then I stepped into the hall to discuss "the plan". They said she looks great. She had very little drainage from the straight drain yesterday with no nausea so they are very confident she is ready for the tube to come out. I was so excited for her.

I thought... huh why not try to prank her. She does it to me!! So I came back into the room looking a little sad. I grabbed my phone and started recording and this is what happened. Her reaction... priceless and caught her HAPPY TEARS!

She us so relieved the tube is out. She kept saying... I feel like I'm missing something. Yea you are missing your runny nose? Sneezing? Sniffling? Nope!

The first picture after her tube was GONE!

The hospital tests their patients before every surgery, then when admitted and then once admitted every five days. So this morning was another day five... she's had 5 Covid-19 tests total ...all negative. I always feel terrible for her when she has to go through them. They push the swab so far back that it brings tears to her eyes every time. The nurse apologizes and Ava says, her famous line of all now, "It's okay I'm used to it." (Sad face)

If you sent Ava a card, a gift or encouragement. She wants to say, "Thank you!" She got a cards (Gary and Janice, Gayl and Nancy) and three Amazon packages today. Jennifer and Kennedy thanks again. I had to post these two videos... she was thrilled. Too awesome of a day not to celebrate!! Your made her feel so special!

 

So far she has done great. Her liquids... 6 ounces of water, 8 ounces of sweet tea, 4.2 ounces of apple juice and half a red jello. She feels great. She looks well and she is driving me nut so this is a HUGE step in the right direction. The doctor's exact words were, "She has turned the corner!" I LOVE that. I don't think I've heard it phrased like this before. We are going to keep going slow and steady. There is no hurry. We have to be sure her intestines can work on their own and stay working.

Thanks for your love, support and prayers.

-Terri

Daddy Long Legs

Hello guys! Easy day today. Maybe easy for me but Ava still has the NG tube. Good news she was off suction today and put on straight drain. Her output was less than 10 ml's SERIOUSLY! I can't say I'm surprised. She likes to do things at her own time. She has only had a few sips of water. Yesterday she drank about 12 ounces of water (It helped soothe her throat. It hurts off and on due to the tube.) and a Popsicle. She just takes sips. (3 ounces total) In "obstruction world" she made HUGE progress today. It means her stomach and intestines are working... things are going down and through. We also walked 16 laps. I counted and it is 273 steps per unit lap. She goes fast too... so fast that the IV pole shakes. No slow walk for her. Walking equals bowels moving and we are ALL for that!

I was a little off this morning. I woke to doctors blasting in at 6 am asking how she was feeling. I had my black eye mask on and was so startled. I had no idea where I was and what was happening. I jumped up and tried to compose myself. I grabbed my hearing devices, stood by her bed and suddenly realized I didn't have my mask on. I can't seem to get used to wearing them all the time and seeing stall wear masks and face shields. It's a reality check for sure.

I asked Ava to show me her PICC (central) line and here is what she gave me? Doesn't she look thrilled? When she first got the NG tube she didn't want to leave the room because she felt "ugly". I told her that a tube doesn't define who she is. After a little bit of music therapy and Mom love she doesn't care what people think. She did a few makeup tutorials and looked so adorable. She is embracing it and not fighting against it... How amazing is she? And so beautiful! She loves life and brings so much light to all that meet her. I'm so proud of how she is handling it all.

Tight fit for 5'7 and a half...

I bet you are wondering... what's up with the title of this post?  Ava's legs are SO LONG. I've been calling her Daddy long legs! Funny story tonight the new night nurse came in and we were talking about how short the hospital beds are... she told us the bottoms are removable! So guess who is way more comfortable?! Who knew this? We didn't, so we had to share! She also shared how to turn off those annoying red lights shining from the ceiling right in Ava's eyes at night. She's teaching us a lot of things we never knew. We love Ali too. Her day nurse was Sara and she is a blast of energy too. Our nurses and staff here has been really helpful. Healing... and more healing. Baby steps are so important in this process.

And her with all the foot room she needs!

See our beautiful scenery? We don't have the best view but I still love the skyline and the clouds! Ava's beautiful flowers lighten the mood. She "checked out" a hospital Xbox. Guess what she's been playing? Minecraft We love the lights above the TV too!

A perfect verse for our family as we are in waiting. Any day we will soar. I trust in God's plan. As soon as I wrote this Ava came out of the bathroom. She says, "You may want to check that out, Mom." Only Ava! SHE POOPED again,,, seriously we love farts and poop. People. I'm so happy I want to show the doctors pictures. 

Please keep the prayers coming. Pray that this obstruction clears fully on it's own. I don't want Ava to have to keep going through these obstructions Only time will tell if the obstruction was due to a twist in intestines or from scar tissue building up. I'm relieved that she has a central line as she needs nutrition while going through this very rough patch. Better days are ahead. We appreciate you love, support and your prayers. God bless you for taking time out of your life to stop by her, check on Ava and raise her up to God. He has a plan for everything.

-Terri, Brian, Ava, Lexis and Emeline

Bored is good, right?

Hey guys. My update tonight is going to be short and sweet. Ava had a great Sunday.... boring... Same thing happening... She is on TPN feeds through her PICC line and still on suction in the NG tube. She has taken a few hour breaks from suction and been just fine. No more fever! I think she has a little more energy with the TPN.

A few pictures of her this morning. Don't you just love her socks? She rocks them.

So many people have sent Ava cards, notes and gifts. She says "Thank you Everyone!"

It makes things a little easier when she knows so many people care.

Brian's cousin sent Ava a really cool book about all 50 states with a super encouraging card about perhaps traveling when she gets better and all this is behind us. We can't wait for that day.

Her stomach is healing well. There is a spot that is a little red I'm keeping and eye on. The doctor thinks it is just the way her old scar is on top of her new one. Time will tell. Two weeks tomorrow post surgery picture. I look at it and say OUCH. She says it doesn't hurt at all. Wow!

We love boring days. Brian worked this morning but was able to come up this afternoon. I had him bring my running clothes and shoes. I really needed a little alone time to just think about me and to ask God to give me the strength to make it a day at a time. There is so much going on. It is so beautiful here. I was excited to run. It has been weeks. I thought I knew where I was going but got lost. Everything looks the same here at the University of Iowa. I had to stop, take out my phone and get directions back to the hospital. It made me think of our situation... I feel like we are in a spot where time stands still. Yes she has made progress and I thank God for it. I'm just kinda hanging out right now trying to find my way through this obstruction again. Will we have answers? Will we ever be worry free of her bowels getting blocked? Will this end? When can we go home? Those are all very real questions and I put them all in God's hands. I don't understand His ways but I trust them. I will be positive and focus on what I can do and hand God the rest. I'll do my very best. My run was MUCH needed time spent with myself... pushing harder and knowing I could do it! I'm so thankful I have a husband that loves us and does his best to try to do what he can to be here for us.

"Lord help guide us through. Give us the strength to face this head on, to lean on each other and our love for you. Bring us closer together as a family. I ask this in Jesus name. Amen."

All the blood work, urine and chest x ray were fine. Her white blood count was a little high at 19. So we are keeping an eye on that. No infection so far. Boring is good.

I made a deal with Ava that I would pay her a dollar for every lap she does around the unit. Today so far she has done 12. That is the most she's done in a day. I'm so proud of how she is handling all of this. Teenage years are extremely hard... hers is Covid and medical issues. Crazy?! God Bless you!

-Terri

Let it go!!

Hello friends! Last night right before bed (about 10:30 pm) Ava started having gagging trouble again and had to spit many times. We asked for Zophran (nausea medicine) and she fell asleep shortly after.

She woke once to go to the bathroom (pee and a tiny bit of stool) and felt like she was going to pass out. She started feeling dizzy and then her hearing went out so she quickly got back into bed. 

The surgeon and doctors rounded this morning. Her NG output is still higher than they like (around 1000 ml's a day) but the color is improving so that is a good sign. We will just keep doing what we are doing. No new changes today. Brian left early this morning to go back to work at Mazzio's. We would love to have him here with us but we need the money AND she is stable so it's okay. He will come back when he gets off. Our grass needs mowed so he needs to do that today too.

We have Maja back!! We are assured a fun day with her taking care of Aya-baya. She was running a tiny bit of a temperature but I think it's this room. Have I talked about her room? Sorry if I already did. My mind is a bit foggy sometimes. All the days run together. I start writing my blog post at about 10:00 in the morning and just keep adding to it as things happen throughout the day... I started doing this because it was taking me almost 3 hours at night to finish an update. 

So her room... We joke about it being "haunted". (I shouldn't even say this out loud for fear something bad might happen. However I've blessed the room... aka talked to God and told Him that we know HE is here with us and no thing formed against us will prosper as the Bible says in Isaiah 54:17 and we are safe.) This is the exact room we stayed after her surgery. They transferred us up here on July 7th after her night stay in the PICU on the 6th. The first thing we noticed was the temperature in the room. It goes from 68 all the way to 74 and we don't touch the thermostat. when we first came we would adjust it and it seemed to make it worse. It is set at 71 but it's hardly ever 71. Next thing is the 'parents' tv will just randomly turn on for about 6 seconds and then just shut off on it's own. This happens as much as 2 or more all at different times day and night doesn't matter. It really scared me the first time it happened at about 3 AM. Brian and Ava had seen it happen many times before but I always missed it. The volume was up so I immediately tried to figure out how to turn it off... then it just shut off on its own. And one more thing I've noticed. When I write my blog posts an entire paragraph would disappear. I've started copy and pasting them to word to save things as this was very frustrating. This never happened before. In her blog whatever I type stays there until it is posted. It saves words on it's own.... the words disappearing is weird. And last but not least the monitor will just turn on by its self. Ava is not hooked to the pulse ox. all the time so it is turned off... we will be sitting here and the machine comes on... weird, right? BUT like I said we know that God is here and we just turn it into humor. If you know us, medical stays, surgeries or treatments we always find a way to bring a smile to our day. It helps lighten our way.

Ava and I did three laps around the unit this morning. Ava facetimed her sisters for about an hour. Then her and I played Scattergories. We just got started with the game. It was about 12:15 and she says, "Mom, I have to poop. I unhooked her suction and unplugged IV pole. She came out happy. She proceeds to say, "It stinks in there!" I look and see a huge pile in her 'pee hat'. Dear Lord we have POOP! I hugged her and we celebrated. I said... "How can we tell Maja?" I pushed the nurse button it was Maja. She said, "How can I help you?" I said, "Can you come in here? She came in, Ava says, "Guess what?" and pointed to the bathroom. The celebration of poop... yep that is us!

We only celebrated for a few minutes and then Maja took Ava's temperature. 101.3 No!! A resident came and checked on her then another. He ordered labs. Maja drew from her PICC line and then her and another nurse looked for a good vein to do a regular blood draw. They used a weird green light to help find them... none worked. Thirty minutes or so later they bring two helicopter medics in to see if they could find a vein. They too looked and tried and couldn't get blood to come out. Now it was over an hour. Ava was so patient. I knew she was not doing very well when she stopped talking. How could they not find a vein? They were going to look for a vein in her feet when another nurse came in with an ultrasound machine. Then one of her doctors came in to check on her. So many people in her room. A lot of bad memories came back... are we still here again? This can't be. Five pokes and an hour and a half later they were able to draw blood. I asked Ava when everyone left. "Why didn't you cry?" She says... "I'm used to it." It broke my heart because this is exactly how she was when she was two and three. Sadness was in her eyes and that is hard to see yet again. What could cause this fever? I am so excited she pooped Praise God!! Not the way we wanted to celebrate at all.

She was wore out and very tired after all that. She got some Tylenol and went to sleep. She got a good hour and a half when the mobile x ray machine came by to do a chest x ray. She was not very happy to be woken up. It's now 8:30 pm and she is still sleeping. We will celebrate tomorrow. I just checked her NG output and it has only been 200 ml's in 8.5 hours.... best ever! Keep the prayers coming. I'm starting to feel like a caged animal. Tomorrow we will have been here 12 out of 13 days if you subtract the one day (Saturday) we were at home, I want to thank God for the stool today. It's what we've been praying for all week. Yay for POOP! (Sorry Ava don't kill me for posting this... hey at least I didn't post the picture of the poop! Pssttt it was HUGE!) Her temperature is back to normal. The did a ton of blood work and chest x ray. No word yet on the results. The plan... if the fever returns they will start her on antibiotics. Pray it is not the new PICC line. 

She has literally been sleeping all day except for a few hours.

Thank you for your comments. I read them to Ava and we get so encouraged by everyone's words so keep them coming, We LOVE them and appreciate you all.

I Believe in Me!

Hey guys. We were so excited when we found out favorite nurse Maja was back. Ava and her really click. She brings so much life to our room. She feels like family already. It's crazy how hard this hospital stay is but wonderful nurses and staff make it bearable... that was Ava's word.

Ava got a central line today (PICC) to get TPN which is nutrition from an IV since she can't tolerate food. It is in her right hand upper forearm. Ava had the option to do the procedure with or without sedation. She choose without! She said the only thing she felt was a prick from the numbing medicine. Maja encouraged Ava to name her PICC line. Ava choose Princess Fiona. This little lady cracks me up. We are so happy to have Ava's personality back... she is uncensored and totally real with anyone that asks her how she is doing. She is tired of everyone asking her how she is feeling and how do you rate your pain. So her plan is to say it as soon as they come in the door. "Fine and 2!... or whatever her pain level is at the time.

Kirsten our amazing music therapist came in and, oh my goodness Ava played the xylophone!! Kirsten seriously is a miracle worker. She had her guitar and played a blue-sie song... encouraging Ava to play with her on the xylophone. She held back at the start but then you'd think that Ava was a pro! I'm so glad I videoed this. It makes me heart so happy! See that smile? I love it.

This afternoon Brian left to talk to his work. Ava and I went for a short walk outside. We had to take her IV pole with us and it was almost 90 degrees... hot and muggy outside. It was nice to just breath fresh air! We sent a snap to Emeline and she sent this back to us. She is always encouraging Ava to be strong, keep fighting and that we all love her so much. Sisters are the BEST!

Ava spent 2 hours off of suction. She did not feel sick and had no pain. We hope to get to a point when her ng output is very low and whatever is blocking her bowels will push through and she can eat and drink again. In the meantime we will just be thankful she is here and that she has no pain. The tube is not at all what we ever wanted again but it is the only way to make her better. It's very hard but she is adjusting better now.

The Shopland's sent Ava this shirt and socks. They are wonderful friends we met at the New Jersey, Ronald McDonald's when Ava was born. Their oldest daughter was born with a birth defect and was treated at CHOP. We love then so much and are so happy to have their love and support at this time. Her shirt says, "Once in awhile someone Amazing comes along... and here I am." It's perfect!! 

So they just started Ava's TPN and lipids tonight. I remember these bags from her central line in 2009. However they have gotten BIG! Woah.... I guess she has grown too! I'm so thankful and relieved she is getting the nutrition she needs! I painted her fingernails and she is watching Cars now. All ready for bed. We had a very good day.

Thanks for all the love, thoughts, gifts, cards, support and prayers. As Kirsten sang today. "I Believe in Me!" and we certainly believe in Ava! "God thank you for keeping her safe. We pray she gets better and better each day. Amen."

-Terri