Ava had her surgery Monday. Post operation, she got really sick and needed to be admitted to the Pediatric intensive care unit (PICU). She was getting sicker and sicker and went into septic shock due to a major infection. She got sent back to the OR last night. Her bowel showed a perforation which leak bacteria and stool all over her abdomen. She needed a colostomy again. It is very scary. she remains ventilated, sedated and requiring support for comfort. We are unsure if the infection is gone, will need to watch very carefully next few days if needs to go back for another operation.

Please keep Ava in your prayers. She is fighting, is so strong. Landon and I are in disbelief we are all here in this situation. We just want her better.

Hello Ava’s family and friends,

It’s been a busy couple months since after her last surgery. Many appointments to her Surgeon and Pediatrician. She has grown so much, developing in gross motors and fine motors. She can pull to stand and move side to side while holding onto something. She loves to babble and giggle. Her favourite place to be is her playroom. She has been teething like crazy, has about 12 teeth. Many popped through just recently all at once.

Landon and I have had to continue the dilations every day to her bum hole to maintain the size. She has been tolerating them better each day, and we have reached the goal size.

Her ostomy has been ok, manageable with the prolapse complication. Her incision to her bottom has healed up, except a small hole that reopened right after last surgery in September just above her rectum. She had so much scar tissue from the dehiscence that the skin was difficult to close back. The big worry in the last while was whether or not that hole would be a big problem, like a “fistula” (which would be a connection channel to her bum hole). She got a test done Tuesday November 13 called a Colostogram which the surgeon and radiologist inserted dye inside a catheter into her stoma to her bum to show whether or not a fistula was there. It showed there was not 🙏🏼, so all positive so far. The next big step will be to reverse her ostomy, which is booked this Monday, November 19. The surgeon will also attempt to fix the hole as well. She will most likely need another surgery when older to fix the hole once she grows more.

Now to prepare for Monday. Landon and I are so thrilled to have this ostomy done with…Both terrified and stressed to be back in hospital and have Ava go through another major operation. This will be surgery number 5.

Almost a year ago, November 18,2017 was the day we got admitted to the Stollery Emerg where our lives got turned upside down with Ava’s diagnosis, and little did we know the journey we would have. It has been emotional for both of us with flash backs approaching these dates.

We have her cardiology appointment tomorrow (Friday Nov 16), which includes her ECHO, ECG and full check up with the cardiologist. We have pre admission clinic in the afternoon. Will be a big day.

We will try and update here how Ava is post surgery. We appreciate all prayers and thoughts towards her. She is one brave girl. Will be eager to get back home and be by our Christmas tree.

It’s been a busy week and a half here with appointments, but all positive so far 🙏🏼. The surgeon is happy how her incision is healing. We have began doing dilations to her bum (using a device to maintain/increase her bum hole size to normal, as it naturally closed a bit after surgery and closes without stool passing through regularly). Not a comfortable procedure we do everyday, but she is so tough and tolerates it well. We keep her incision as dry as possible, changing every time she pees with saline irrigation’s and using sterile gauze. Her ostomy is doing good, we are getting used to the new appliance and managing her prolapse.

She is crawling everywhere and is on the move! How do u tell a 1 year old to “rest” after a surgery. Very hard! But at least her incision is not bothering her. Landon and I last week finished baby proofing the house.

She misses her baths, cannot wait until we get the “go” in a few weeks from the surgeon when we can again.

We will be back and forth to the Stollery the next while to her Pediatrician and surgeon to keep a close eye on her. Thanks everyone for the kind words and asking how Ava has been❤️💕.

Hello everyone,

We are back home as of yesterday eve from the hospital. We are so sorry we didn’t get a chance to update while in hospital. Ava’s surgery went well, the surgeon was happy with his work. We were at the hospital really early, as Ava was the first case.

The surgery took about 3 hours, however the doctors had an extremely hard time getting an IV in the OR (over 1.5 hours, 😓). Ava’s a really hard start for IV or blood work. The surgeon reconstructed her perineum, creating a new bum hole, and cutting out scar tissue from the previous surgery. We were admitted into the Peds surgery ward again.

The first 24 hours was the hardest. Ava was put on a morphine infusion for the first time (she is usually on a different drug called dilaudid which is a stronger form of). She was very sensitive to morphine and wasn’t helping with the pain. It was a long night trying to do anything in our power to keep her comfortable. She had 2 IVs, one in each arm, a catheter, and cardiac monitor leads.

She needed to be on 2 IV antibiotics to prevent any infection. Her pain got under control after a couple days. We struggled with keeping the IVs patent as they don’t last long in her veins. Her catheter needed to stay in for 5 days.

On Monday, we experienced a problem with her ostomy as it began to prolapse (meaning the intenstine now extends out of the stoma with any stress of abdominal pressure). This makes changing and managing her appliance a bit challenging, but still manageable. We had to try new products that are a bit bigger and better suited for this. This felt like a big set back for Landon and I as her ostomy was working so well for us. It is working well now with her new appliance and shouldn’t need any further surgery until reversal.

On Tuesday, the doctors took her catheter out and trialed seeing how her incision handled urine on it. We must keep it as dry as possible just like before using specific dressing supplies.

Ava unfortunately caught a cold virus while in hospital. This made it bit harder for her to rest with trouble breathing through her nose at night 😓.

This hospital stay was different for us 3 as Ava had grown so much and wants to be active, which is a good thing- but challenging with many cords, lines, and fresh incision. She is such a tough girl, she still blew our minds how well she handled pain post surgery. We have Homecare coming to help monitor her ostomy and incision and provide us with supplies. She is to see her Pediatrician and surgeon next week for follow up.

Thank you everyone for thinking of Ava with this surgery and all the prayers. ❤️ we will keep in touch.

Hello Ava’s army! Landon and I can’t believe we just celebrated our Ava’s 1st birthday. Hard to believe 12 months has gone by. She has come so far, and is growing so well. We had a big birthday party for her with our family and friends.

Ava is booked for surgery Friday September 7. It is a reconstruction of her bum, creating a new bum hole and repairing surrounding scar tissue. This is a tricky procedure and we will know more post op once the surgeon is able to visual better in the OR. Long story short he is doing the first surgery again, analplasty. This is potentially 4-5 days in hospital, we will just take each day as it comes. The ostomy will remain in place the time being. There is a lot for Landon and I to prepare packing for this, and mentally preparing another admission and surgery. We will post on the blog here how things are in hospital and Ava’s progress.

Ava’s progressed with her gross motor skills. After she turned one, she is now able to go from laying on her stomach to a sitting position on her own, and hold stand (Bracing hands onto something) when propped up. This was a huge milestone as we have been working with Physio therapy increase her pelvic strength. She can scoot and do a small crawling motion, She loves to share toys, push buttons, and dance. She continues to see Physio, and will be introduced to occupational therapy and speech next month. She has learned to eat herself with her fingers, and has transitioned to table food cut up.

In July, we had a scare bringing Ava to the Stollery emerg with a high fever that wouldn’t come down. She was diagnosed with a urinary tract infection and needed IV fluids and IV medication, blood tests and catheter insertions for urine samples. She got a procedure called a VCUG (voiding cystouretheography) which required a catheter, then inserting dye up into the urethra and kidneys with X-ray to see if any urinary reflux. Results shown Ava did have this unfortunately. She now needs to be on long term antibiotics to help prevent UTIs and careful monitoring with any fevers.

We had a hard time getting outside this last month due to the smoke outside, but she sure enjoys all her new, fun toys inside. When the smoke cleared up, she enjoyed the sun and fresh air ☀️🌸.

Please keep Ava in your thoughts this coming Friday, as we pray for a successful surgery, healing, and quick recovery. We all feel she deserves a smooth admission and back home❤️

Hello Ava’s army!

Ava has had a really good month of June. We had our first Father’s Day together as a family and celebrated moms birthday ❤️. She is continuing to grow. We are still diluting her formula to help control her weight gain. She is continuing to eat solid foods increasing the texture consistency. She has her 2 bottom teeth and now has 2 top teeth coming through.

We met with the surgeon the middle of June and his plan is to do 2 surgeries. The first one will be beginning of September to reconstruct her rectum opening. The incision is completely closed now, continuing to strengthen and scar. We are finally allowed to use baby wipes to change her wet diapers instead of dressing gauze, something so simple like that makes things easier. We just have to do a dressing overnight when she sleeps.

After 3-4 months from the surgery in September once that heals the surgeons will look at reversing the ostomy.

Her ostomy has been doing good. We have got the hang of the products and changing it every few days. We have to adapt to certain shirts or sleepers that fit properly with it. She hardly notices it’s there which is a blessing.

We got the OK to use her excersaucer and jolly jumper again. We are also allowed to use a baby carrier which we weren’t allowed to before.

Physio still comes to the house every month to assess Ava’s gross motor skills. She’s still behind where they’d like her to be but she is catching up good. She is rolling over back and forth all the time and is learning to scoot across the floor.

Her 1st birthday will soon be coming. We cannot believe how time has flown. Landon and I still struggle with PTSD time to time from in ICU. Some days are good days, and some days not so much. But we get through together as a family.

Ava’s smile is truly contagious. She continues to laugh and steal our hearts. We will continue to post pictures of her so everyone can continue to see her grow into the beautiful girl she is.

Hello Ava’s Army,

The last couple weeks we had many appointments at the Stollery. Her cardiology appt. was last week and went very well. Her ECHO of her heart showed very positive results. Her cardiologist discontinued her heart medications! Will monitor this for the next little while. Ava continues to grow and grow, in fact too quick. So much that now we have to “cut back” on calories, diluting her formula. (Sooo opposite from post heart surgery). Need a happy medium haha.

Her perineal wound is continuing to heal. The incision is almost completely closed, including her rectum. We met with the surgeon this week and the plan will be to go to the OR within 1-3 months and surgically re-do/create a rectum. Then let heal for 3-6 months. Will get more definite plans in a few weeks. We still have to do her dressing changes every time she pees through out the day and will for while yet. The skin will need to scar and toughen up. Her ostomy is still working well. Homecare comes twice a week to help out if needed. She loves to roll front to back/back to front constantly which doesn’t stop her with having an ostomy. We are finally allowed to let her sit in her bath tub, will do this in gradual steps and very brief periods. She sure misses her bath time.

With Ava growing, her sleeping schedule has been changing, she is sleeping throughout the night, giving mom and dad a break 🙏🏼. She sure loves the fresh air outside. Those hot spurts however were a bit too hot for Ava, especially with her ostomy appliance (thank gosh for air conditioning).

We are trying out different foods for her to taste and different textures to try. So far her paralyzed vocal cord is handling the consistency’s. She loves her fruits and vegetables. Her two teeth and coming in nicely ☺️.

Physio therapy came to our house last week and gave some more tips to help her gross motor skills. Her muscle strength is getting stronger, why we need to cut back on her formula concentration so it’s not too much- too quick. They were overall impressed with how well she is developing.

Our goal is to enjoy time outside as a family while we can with the nice weather before her next operation. Thank you to everyone who continues to think of us ❤️

Another busy week in our household. Had a few appointments at the Stollery, follow ups with Ava’s Pediatrician and surgeon. So far they are both happy with the healing to the wound on her perineum. She is so resilient, it truly amazes me. We are to continue with the dressing changes every time she pees for at least a few more weeks. It is about 11-12 times in 24 hours we end up doing the dressing changes from the amount she pees due to her heart medication which makes a busy morning. Her ostomy is working very well so far. We are still testing some different products to see what will work best for Ava. Home care comes twice a week to help me change the appliance if need and bring me supplies for her dressings.

We met with the immunologist and found out Ava’s immune system shows improvement post heart surgery, which is so great. We were on some isolation for certain things for Ava to help protect her. Essentially her immune system is about 80 % effective , (used to be 60%). The immunologist is not sure if we will see any more improvement due to her digeorges syndrome. But at least this is more manageable now.

Last Saturday, we went to the Stollery teddy bear fun run. We are so glad we were able to go and bring Ava. She did so well being out, enjoyed the fresh air and some sunshine. That was the first time since birth she has had the chance to be able to be outside that long ( 4 hours). Landon and I got quite a system with her dressing changes and ostomy needs for travelling and it worked good. The event was amazing, a bunch of Ava’s baby friends were there as well as more friends and family, “Ava’s Army” 💪🏼. Will definitely make it an annual event .

It was so nice to be out as a family other than at the hospital at appointments. Landon, Ava and I all enjoyed it.

Ava’s been learning to sleep throughout the night which has been so nice, and her ostomy holds up well with that.

This last week my Dido passed away. It has been hard, and we aren’t able to attend his funeral with Ava’s needs here right now. It breaks my heart to not be able to be there.

Ava is continuing to grow and develop. She now weighs 17 lbs 5 oz , 65 cm long. She loves tummy time and playing with her toys. Her favourite word is still “mum”. It also looks like more teeth are coming in!

This past week has been so busy for our family. We had homecare come twice this week and went to see the surgeon and Pediatric wound care nurse on Thursday for a follow up. They are happy with the progression of her wound to her perineum. We still need to continue the dressing changes every time she pees, but landon and I are getting a routine. The mornings are the busiest because Ava is prescribed a medication for her heart which makes her pee more than usual to decrease the workload of her heart, so certainly increases the dressing changes ( about 11-12 in 24 hours) .

I forgot to mention in the last post, which people have been asking us about her colostomy that the ostomy is to be reversed. We are told she will have the ostomy for about a year. The big debate that the surgeon has with Ava is her new rectum hole that was reconstructed may close over with the healing process. So whether to go in for another surgery to create a new rectum when things are healed or try and preserve as much as possible doing a process called hagyard dilitation.

Ava is getting used to her ostomy. This week we are trialing some different products of what work best for her, all trial and error. She’s doing very well with it so far, continues to play and roll over. She is only allowed sponge baths for now still, so we cannot wait till we get the green light on that which will be a few weeks.

She went for her first haircut Friday evening ☺️. Each day we are doing our best to go outside on the deck, even if it’s for a moment and get some fresh air. Ava continues to try new mushed up foods, her cereal is still her favourite of course.

We got discharged from the Stollery last week to home. It has been a roller coaster, adjusting to a new normal again; but so far things are going great. Ava is so excited to be sleeping in her nursery, in her own crib. It is very busy with dressing changes to her perineum wound as we have to do them every time Ava pees. She tolerates them so well. Landon and I finally got in a routine of how to organize all her supplies and do this independently. We are seeing progress with healing which is really good. Her colostomy is so far working good too.

Home care comes twice a week to help give supplies and keep track of progress and provide any help we need. She has about 2 appointments a week so far at the Stollery and we have to send pictures to the surgeon every couple days to keep updated. She is eating her solids and formula; trying new foods. Her favourite is still her cereal and pears in the morning. Also Ava’s first tooth has came in last week!

We had turned our third bedroom into a play room for her to create a fun space for all her toys; We all love it. She is tolerating short spurts sitting on her bum to play. We can’t wait for the green light to give her full baths, sit in high chair, and go in her jolly jumper. Will be a while yet, but really looking forward to it.