We are still on the ward in peds surgery 4D. She has been more active and playful. It’s so nice to see her more like herself. It’s been slow and steady, but positive progress with Ava. Last night at 3 am her IV went interstitial (out of the vein) which was very painful for her because of the potassium and narcotics that were infusing 😞. She is a very hard start. Once they got another in she was able to fall back asleep. Her incisions to her abdomen are looking good. We were able to wean her off the dilaudid pain medication today. Will be managing the withdrawals from that. She has been so tough and has been amazing us with her strength❤️. She has passed more gas today🙏🏼 we have never been so excited to hear a “fart” haha. And she even had a small poop smear🙏🏼. Her bowels are taking their time “waking up” from the major surgery. We are still all on our toes and holding our breath waiting to see her bum fully work. The surgeon explained today to Landon and I that Ava will have constipation issues as her bum hole has so much scar tissue and is constricted. But one step at a time.. and waiting for some poop action 🤞🏼🙏🏼. We were allowed to take her for a stroller ride which she enjoyed. She was allowed a couple ounces of pediasure today which she enjoyed. Cartoons such as peppa pig and dinopaws are her current favourite. Will continue to keep u all updated. Thanks once again for all the love and prayers ❤️❤️

Hey everyone, Ava went into surgery yesterday at 11:30 am and she came back from recovery at 4:30 pm. The surgery reconnection went well, he cut out another chunk of bowel, and she needed 2 blood transfusions due to the large amount of scar tissue she has inside that bled. The surgeon said her bum hole is a bit on the smaller side so will have to watch carefully and probably continue dilations. Last night was a bit rough, we had a hard tome getting her pain under control. She came back on a dilaudid infusion for pain which wasn’t doing enough for her. She became so agitated in pain they needed to move her to a close observation room for the night. After more pain medication she finally settled and was able to sleep in our arms. We are back in our own room as of this afternoon.

The next step is waiting for her to pass gas from her bum. Her bowels essentially shut off after that surgery. So she can’t have anything to drink or eat yet which is extremely hard for a toddler 😩. Distraction and comfort has been key. She’s such a tough girl. All the nurses and doctors just think she is one of the toughest girls around from everything she has gone through. We are thinking positive thoughts for her to pass gas and see some action in her bottom. Thanks for all the prayers for our little girl. We will update again soon❤️.

Hello Ava’s army ❤️,

We had a very important past couple weeks with Ava regarding appointments. First of all, she turned 18 months old 😊❤️. We seen her pediatrician and her surgeon. We discussed the plan moving forward with her ostomy and bottom. He increased her dilations up a size. We still need to do them twice a day, then after a couple weeks just once a day. He said she is ready for surgery to reverse her ostomy 🙏🏼. It is booked for Monday March 11. We have a busy week prior with pre-admission clinic, more appointments, and getting things ready for the hospital admission. She should be there about 5-7 days. We ask everyone to keep positive thoughts and prayers for Ava on this important day. He will need to open her stomach completely open again for the operation, Definitely has Landon and I anxious going through this all over again.. We just want it to work so bad as she deserves nothing but success from this. A big risk is how much scar tissue is there from the many surgeries she’s already had in her abdomen. We are hopeful and excited for her to finally “poop” from her bum.

She has been doing really good here at home. She got her 18 month immunizations last week. She got a fever for a couple days but luckily passed that. She went for a sleepover for a weekend at Nana and Papa Deley’s, and is going to spend a few days with Grandma and Grandpa Yanishewski this week while Landon and I go to his Fountain Tire Convention. Both grandparents caught on well with her ostomy skills, dilations and medications 👍.

Ava has been so playful, active, and of course her smiley self. She is so close to walking. She takes a couple steps on her own. She loves to play with her puppy and kitty. She can’t get enough of them.

We will keep everyone in touch how her surgery goes and how things are in hospital. Thank you for the the kind words and prayers.❤️

Hey everyone, glad it’s February. Feels like we have been hibernating all week as it has been so cold and snowy ❄️. Ava has been doing really well here at home. We had a couple appointments in the last 2 weeks. Occupational therapy came to the house and we seen her Pediatrician for a follow-up. Her ostomy has been good and we continue to do the dilation twice a day. Can’t believe she will turn 18 months soon. She is almost walking, and can stand for short spurts. Ava is getting stronger each week and is growing taller. She has been so playful and giggly. We have done a couple outings together as a family on the weekends which has been really nice.

This month is CHD (congenital heart disease awareness month). Honestly before Ava’s journey I had no idea this month awareness existed. Learning a lot about it opened my eyes how many children are born with a heart defect. We met some amazing, incredible families while in the Stollery whose children had heart surgery and other medical procedures like Ava. These families are amazing and are a big support for Landon and I.

We are so blessed Ava’s heart is doing well right now. It was rare with her specific heart defects to be undiagnosed at birth and grow to 3 months old when it was discovered. She presented no symptoms other than not gaining weight and her body adapted and compensated to her heart defect. It still scares us how she looked so “good”and “fine” yet was struggling inside with each heart beat. Thankfully for the heart surgeon, anesthesiologists and intensifiers for their incredible work, Ava’s heart is beating normally right now.

She had an interrupted aortic arch, a massive ventricular septal defect (VSD), atrial septal defect (ASD) and Patent PDA which was all repaired -essentially her heart re-wired. She was 3 months old and her heart was the size of a strawberry. The surgeon used ‘gortex’ to repair alot in her heart. Ava has wires permanently in her chest from when it was cracked open. She got really sick in the PCICU with pulmonary hypertension to where she needed to be paralyzed and on full life support including nitric oxide in order for her vitals to sustain. She needed many lines, tubes… it was overwhelming…Landon and I couldn’t hold her for 2.5 weeks. She will always have a cardiologist and have ECHOs to monitor her heart. She may need another heart surgery down the road when she is older, but for now it is working really well 🙏🏼.

This was just the beginning of our journey. Our next step is her reversal of her ostomy. We see her surgery on in a couple weeks and will continue to make a plan. So much anticipation ahead, but hope..as to getting this all fixed.

We’ve been home just under a week and Ava has been recovering well. She is back to eating and drinking her normal self. Her sleeping routine is much better since hospital, each night improving. She is so energetic, giggly, and playful. We had a follow up with her pediatrician yesterday from post admission and she was happy with how Ava has recovered. I can’t stress enough how amazing her pediatrician team is. We are so fortunate to have Ava’s care under them. They watch Ava like a hawk and are the “go to” physicians at the Stollery. Her ostomy has been good at home. We have isolated her since getting discharged. She has enjoyed her play time, toys, and of course animals- we just had to be cautious. This is hard for Landon and I as we want social interaction for Ava as much as possible, with other kids. Now that she is feeling better we hope to have visitors and go see friends.

This last hospital admission really hit Landon and I, as this was not planned… came all of a sudden..and extremely unfair. In a sense I feel angry. I still feel the need to grieve of what Ava has gone through. Our anxiety has raised as we are constantly concerned with her health and ongoing. We just pray her next surgery will go well. We want that so bad for Ava and our family as a whole. It’s so hard to not be anxious about it as the severity of her surgery complications in November. We are taking it day by day, otherwise it is just too overwhelming. I think that’s why the last admission hit Landon and I emotionally as Christmas and New Years was our “break” in between with Ava in the Stollery. And that was taken away from her and us. We are thankful we are home, she is healthy now, and back to her self. It’s a new year, new season, and will be a new outlook on her next admission. Positive and hopeful. Thank u again to Ava’s army. We are blessed for your support to her and our family.

We are finally home. Ava was able to get her Ng tube out a couple days ago and was able to drink pedialyte. It was a challenge like last time to initiate fluids but she did way better again. She was 5 days of not allowed any food or fluids 😞, extremely hard for a toddler. She was able to tolerate some food. The physicians discharged us and we have been settling in at home. She has been such a tough girl. She just keeps on moving, and carries on. Each day she will get better with her food and fluids. Her ostomy will be a challenge for a bit as it is inflamed and has runny stool.

Her surgeon and pediatrician and medical team are amazing and watched her very carefully. Basically she caught a gastrointestinal virus which led to a partial obstruction from the severity of the virus- which is all scary with her huge medical history. We were in the cardiac/bowel unit and many kids got sick like Ava who have a large medical history that made them hospitalized. As parents we just want to bubble her to provide any sort of extra protection. We keep our house as clean/germ free as possible. Any gathering of people visiting is stressful for Landon and I as we have to be extra cautious if Ava grabs something dirty off the floor or licks her fingers, unlike another child because of her immune system. We are so thankful they were able to treat this and her body was able to settle and recover. Being at home is just a blessing. She remembered where each and every toy was that she got for Christmas and had to play with them all as soon as she seen them.

Thank u to everyone for the thoughts and prayers. We appreciate each and everyone. All the support from family and friends. Thank u Ava’s army ❤️❤️.

Here’s a picture of her in her playroom resting and watching cartoons after we got home ❤️

Ava got unfortunately admitted into the Stollery on Saturday dec 29 with an alarming amount of vomiting. It was continuous for 40 hours straight. We brought her in right away cuz she was getting so dehydrated which is not good with all her underlying conditions. It is New Year’s Day and we are still here. She has a partial bowel obstruction and gastroenteritis. Her surgeon and pediatrician here believe the obstruction is most likely caused by the large amount of scar tissue in her abdomen from her multiple surgeries and the virus made it worse. She has an NG tube, IVs, antibiotics and cannot eat or drink. To keep a toddler NPO (nothing by mouth) for multiple days is beyond stressful and challenging, and with pain on top of it. She is a tough girl. She is so tired, and weak. She at least is watching her cartoons and showing signs of improvement today.

We are devastated we are here, just after Christmas during New Years. Ava has never been home for New Years before. Landon and I are so saddened she is going through this. She is showing improvement today and we pray for even more tomorrow. Keep her in your thoughts as she needs the strength to pull through and come back home.

We have been home for 2 weeks now, and it has been so nice to be all together in our home – especially by our Christmas tree . We are still so thankful and blessed to be home for the Christmas holidays. It is something we don’t take lightly or for granted, as this changed our perspective on things in life we can and cannot control. Looking back one year ago where Ava was in the PCICU feels like yesterday in a strange way. It is still so fresh in our minds where our journey started at the Stollery and how far she has come. Landon and I both the other day at supper looked at each other and both said how we can’t believe how much she has grown. It’s amazing. How her heart is working well- something so simple yet so vital. To gain weight and eat and drink on her own is absolutely amazing.

It all gets overwhelming and has been difficult at night as parents.. when u are trying to settle to sleep it’s like your mind is set on a tape recorder and plays over and over the traumatizing things Ava has been through and thinking about ahead of the future. It’s hard to control. She has spent months at the Stollery admitted; a total of 6 major surgeries and still requires more. She has so many scars… We both get angry, frustrated as why she has to go through this. It is just not fair. No baby or child should have this “unfairness”.

We just look at her and think how lucky we are to be her parents. She is such a blessing and miracle. Ava is one of the strongest kiddos I know. She shows pain whose “boss” and doesn’t let anything stop her. She constantly has a smile on, truly amazes us.

She has been doing really well here. She passed her withdrawals of the narcotics. She is getting better with her separation anxiety.. and eating and drinking well. She is cruising around and playing with her animals. She is using her walker more and more to walk with assistance.

We took her last week to go get her picture with Santa – at Kingsway, which was a lot of fun. It felt so “normal” of what a toddler should be doing. It was nice to be out as a family. Landon and I both really enjoyed it. Thank gosh for some ideal ‘family washrooms’ as it can be challenging to manage an ostomy while out- and with a second medical bag full of supplies. It is our goal as a family to go out more, do more outings.

Ava had her Pediatrician follow up a week and a half ago. Her stitches on her bum where the surgeon had fixed last procedure did not heal closed as there is too much scar tissue, so we will look at next steps of what to do. We are doing the dilations twice a day. Overall her doctor was very happy with how she has been post op. We see her this week again.

She seen her ENT doctor (ears, nose and throat) last week for a follow up and he checked her vocal cord. He does this by putting a camera scope down her nose into her throat while awake- definitely not a pleasant procedure. She is sure tough.. It showed her left vocal cord is permanently paralyzed. We were hopeful some nerves came back over time but hers have not. It currently is causing her no difficultly as she can swallow and drink well. This would be the main concern. Will just continue to watch and monitor as she grows.

We thank everyone again for all the love and support for our Ava. She is blessed to have such an amazing support group. We are thankful to be home together. She was excited to help wrap presents as I’m sure she is going to be more excited to open the ones Santa got her 🎅🏻❤️.

We are finally home ❤️🙏🏼, we got discharged a day and a half ago, and does it ever feel nice to be in our home all together. Ava was so excited to see her puppy, kitty and all her toys. Landon and I cranked our Christmas carols and turned on the tree as soon as we walked in the house. 🎄

It is an adjustment getting her back to her crib and begin our routine again as this last hospital stay gave her negative emotions to things that use to comfort her : her crib, drinking in bottle or sippy cup, diaper changing, and pain with playing and moving. She’s already showing she’s more comfortable and progressing since being home. She is withdrawing from her narcotics she was on, which will go on for another week. ( u withdrawal the amount of time u were on them). It’s not as bad of withdrawals as it was when she came home from her heart surgery, but it is different with her present age and development. Babies and kids will have a high pitch cry, get tremors, hallucinations, sweat, and be irritable.

She couldn’t wait to see her play room, she is managing pain incredibly with the major surgeries she just went through. It will take time, but her strength and determination amazes us. ❤️

Landon and I are busy with her dressing changes and ostomy, we are using a different appliance until her stoma and abdomen heals more, then we will go back to our old system we had routine with. We have to do dilations twice a day now to get bottom again to keep size patent. We have follow ups starting this Monday, and homecare will resume. She is eating and drinking a lot better since being home. She was so excited to go back in her high chair and watch cartoons (favourite: Backyardigans and Peppa Pig) in the living room.

All of this hasn’t still sunken in to Landon and I… its hard believing this all happened. It’s just not fair. She is such an amazing little girl. You look at her and you wouldn’t think she just went through all of that; that’s how tough she is ❤️. We are so thankful and blessed we could bring her home back to her Christmas tree. She deserves to be in her home. We thank everyone again for the prayers, well wishes, and support. We have such an amazing support system for Ava. ❤️

Landon and I both just want to start out by saying thank u to all the prayers for our Ava. Prayers go along way and we believe they helped guide Ava in the right direction. It got so scary last week, I honestly don’t even know how to say it. Ava developed Systemic Inflammatory Response Syndrome with Septic Shock and needed to be ventilated, sedated, and require blood pressure support for her heart. She was extubated on the weekend, and has been heading in the right direction. We got moved out of the PICU and onto the Pediatric surgery ward (4D). She is on nutrition support (TPN) in a PICC line. Her NG tube was removed yesterday and now we are waiting until her bowels are ready , as they completely stopped after the surgery on Wednesday. She is still fighting pain and uncomfortableness . She has 2 large incisions on her abdomen ( again..).

This is all a shock to Landon and I still. It hasn’t set in where we are, grasping what Ava has all gone through.

It is a blessing to see her awake and to hold her. She is so sleepy and not herself as her body is still quite weak. The doctors are all truly amazed how she recovered in the ICU. She is the true definition of a miracle. Thank you to everyone for the messages, gifts, and supporting words.