CHD Awareness Week – Avery’s Story Continues

This post is a continuation from yesterday’s

Getting to Edmonton:

Avery made it to the hospital in Edmonton and was successfully re-assessed and stabilized. Since her oxygen levels were good (~85%), they were able to give her a bath and hold off on immediate surgery. This turns out to be quite beneficial for me since I pop a staple and my c-section scar refuses to stop bleeding. Given the short-staffing of the holidays, and my two older kids being saddled with the flu, it wasn’t until December 27th that we were able to make it to her bedside.

Talking to the doctors:

In the world of CHDs, Avery had a rather straightforward and repairable defect (TGA). Her surgeon tells me that he has a 98% success rate (the 2% of children who did not survive had other complications besides the CHD). He is quite confident (almost blase given the number of these procedures he had performed) and it rubbed off on me as I remained relatively nonplussed by what is about to happen. (Note: Here is where I may caution you as to the message boards on the Internet [see links below]. The Internet is an invaluable tool in educating yourself on your child’s diagnosis. However, personalizing the experience on message boards can be tricky as misinformation and traumatizing stories abound. I was almost “lucky” to not find the message boards until after Avery had her surgery as I am sure my faith in the hospital, doctor and procedure would have been shaken and left me quite unnerved.)

He does warn me that given the holidays, as well as the number of babies brought into the NICU over the past week, that Avery would not be priority one in getting her surgery. Nonetheless, he promised me that she would get the repair within the two-week period he outlined as ideal.

Bumped and “your baby is very sick”:

As a forewarning to any parent stuck in the NICU, here are two things to remember a) nothing goes according to plan and b) the days drag when you are sitting next to a layette with a sedated baby.

Avery was scheduled for surgery on December 30th. She was bumped due to a baby who required a heart transplant (quite a few parents who had babies with hypoplastic left heart were opting for a heart transplant versus the three complicated surgeries typically performed). Since she was going to be delayed, the doctors elected to extubate her (remove her breathing tubes). Since Avery was no longer sedated, she began to flail wildly and pull out the rest of her tubes (she was a feisty baby).  Learning that she was not about to be undaunted, it wasn’t long before Avery was again sedated and intubated. These procedures are not at all fun to watch so they typically will tell you to leave when they need to do it.

She was then scheduled again for her repair on January 5th. As one of the requirements of the surgery, she needed an IV in the groin. It was late on the evening of the 4th so we went to dinner. We came back and all hell had broken  loose with Avery. She was as white as a sheet with splotchy, spiderweb-like markings all over her body. All her other vitals seemed to be OK (save her blood sugar which was super high) . Her layette was crowded by three nurses, the NICU doctor on call, a radiologist (taking another echocardiogram), an infection specialist, etc. They didn’t know what was wrong with her but only told me “your baby is very sick”. At the time, I didn’t appreciate what this coded language meant…it was only later that I realized it meant “your baby could die”.

I was never really freaked out before but this scared me. I kept thinking that had she already had the surgery, we wouldn’t be going through this. It has only been a week and a half but I felt like I had lived a lifetime in that period.

As the hours progressed, her condition seemed to better (especially since she was pumped full of antibiotics immediately). It was later determined that she had become septic as a result of the IV insertion and some pre-existing bacteria in her system. Needless to say, she was bumped again from having her surgery.

After recovering from sepsis, Avery was scheduled to have surgery on January 7th. Once again, she was bumped due to a child who had complications with his/her artificial heart. It was now getting close to that two-week date (i.e., the optimal window for her CHD repair) and I was as anxious as I had ever been in seeing that Avery get her surgery (I did not want her to get sick again!). She was rescheduled for the 8th when she would finally receive her life-saving procedure.

Open heart surgery:

On January 8th, exactly two weeks after birth, the surgeon at Edmonton’s Stollery Hospital, performed an arterial switch (also know as the Jantene) on Avery. In this procedure they switch the pulmonary artery and aorta back to their intended positions on the heart. The trickier part of the procedure was switching the cardiac arteries from one side to the other (since they each perform different functions for each side of the heart) since they are only the size of fishing line. Avery was cooled and put on bypass for this procedure (which would play a part in a later post-surgical diagnosis) but she nonetheless sailed through the surgery with no complications. Moreover, they were able to close her chest immediately (in smaller babies, they do not stitch up the baby until the next day in order to allow the swelling to subside), remove her pacemaker leads within eight hours and get rid of the chest tube the next day. The nurses told me she had the fastest recovery of any baby up to that date with the same repair (what a relief!).

Coming back to Calgary:

A mere four days after her surgery, Avery was off of all her heart medications and jetted back to the Alberta Children’s Hospital to a) get off the morphine (she was addicted!) and b) learn to drink from a bottle (I did not know that babies lose their suckling reflex if they do not use it within the first few days of birth). It would take a long two weeks for her to gain enough weight to be released and I am sure the nurses where happy to see us go since Avery was only happy “in arms” (thank goodness for all the volunteers at ACH!).

(Note: Cardiac babies can be real sleepy and not take in enough nourishment so it is a real challenge to get them “on the program”. They could have sent Avery home with a gavage tube but I really didn’t want to have to deal with that so I was grateful when she slowly but surely figured it out.)

Next time: Post-operative care, growing up and current challenges.

Note: If you are a CHD parent, I have found the following resources to be quite useful:

Allison mixes up her day with mothering, working and crafting. She has three wild jackals (also known as children): Tristan who is seven, Charlotte who is five and Avery who just turned two!  She blogs at Stampin’ When I Can.


2 thoughts on “CHD Awareness Week – Avery’s Story Continues

  1. Pingback: CHD Awareness Week – Avery at Two | Kids in Cowtown

  2. Pingback: Month in review – February | Kids in Cowtown

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