TUESDAY

Our little girl was extremely popular: she had a visit from the surgeons, blood work done, a head and abdominal ultrasound, a PICC line inserted via her leg, a heart echo and visit from a cardiologist, an examination from the genetics team and another visit from the surgeons. Whew!

After a very rough start to the day, I rallied in the afternoon and Jody was able to bring me over to CHEO so I could officially meet our baby around 3pm. SO MANY TEARS OF JOY WERE SHED!! Unfortunately with all the different teams coming in and out I only had about 10 minutes with her in the afternoon, but we went back in the evening. Jody was adamant that I would be the first person to actually hold her (and he was the second) and I melted all over again! Best part: Neither of us dropped her! So far we’ve only observed diaper changes; no experience yet, but all in due time.

Jody stayed with me overnight here at the General on a pull out bed in my room and per my suggestion, he moved his car from the CHEO parking lot to the covered parkade at the General to avoid the impending snowstorm.

Still no name officially, but now that we’ve held her we feel pretty confident on the final three names! She’s “Neonate McDonnell” for the time being, but Jody likes to pronounce it “Nay-Oh-Not-Aayy” to make it sound more glamorous. And yes, I roll my eyes just as much as the nursing staff at that one …Classic Jody!

 

WEDNESDAY

She did indeed have her surgery today at 9am. They advised us that if all went well the surgeons would be able to get all of her outside bits back inside her abdomen and do a “primary closure”. If she didn’t tolerate it then they would do a “staged closure” over multiple surgeries.

I was able to again hold her this morning, but this time for 45 minutes until the anaesthesiologists arrived, after which they then asked if I wanted to carry her from her NICU pod to the doors of the OR. Child please, of course I did!!  It was hard to hand her off and I had a good cry but I knew our team would rock her surgery!

Just after 12:15, she arrived back into her pod from the surgery. Everything went really well – the surgeons were able to get all the structures that were in the omphalacele inside and perform the “primary closure” with a purse string closure. There was even some extra skin leftover, but the surgeons decided to leave it in place just in case it turns out that her body isn’t tolerating all of the extra bits being on the inside and they need to relieve things a bit. I cried tears of joy and then literally jumped up and huged both doctors. I may have over extended myself and my own surgical site, but the stinging pain was totally worth it!!

Right now and for the next few days she’ll be heavily medicated to keep her immobile and to manage pain. She’s also intubated and on a respirator for the next little while. She’s actually on a Fentanyl drip for pain management, so she’s officially a narco baby!

The doctors will observe our babe closely over the next few days and see how she’s doing, but for now everything looks great. We were immensely relieved when we heard from the surgeons about how everything went–it was amazing to see her with a regular tummy and no extra appendages. As Jody said to me, she’s a NOphalacele baby now.

The General hospital is letting me stay one more night because may I may have caused a bit of extra pain with those post-op high kicks – but also they said they know what we have gone through and are ok with me here so I can be close to our wee gal!

 

  • Ange, Jody & Baby Girl*

That’s “nay-oh-not-ay” – Jody

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