It’s been 2 weeks since Emily had her omphalocele surgery and her recovery has gone really well! Her actual surgery date was Wednesday March 2nd – and from Thursday March 3rd to Saturday March 5th, the team gradually reduced the work that the respirator was doing for Emily and at the same time they gradually reduced the amount of Fentanyl that Emily was receiving for pain management. Her catheter and breathing tube were both removed on Saturday March 5th, which also meant that she no longer required a dedicated nurse (1:1 care) but could be monitored under 2:1 care. Her surgeon, Dr. Cowan, came to visit her in the NICU on Tuesday March 8th in the afternoon and was really happy with how Emily had been – and continues to be! – tolerating the repair. During his visit we got to finally see the surgical repair site without any dressing for the first time and we were so impressed with how things looked. Most omphalocele repairs result in the patient having no bellybutton – just a large scar – but Dr. Cowan was actually able to fashion a larger, semi-outtie looking bellybutton for Emily. As noted previously, the surgical team didn’t remove the extra skin ‘just in case’ she couldn’t tolerate the primary closure surgery, but made sure to fashion things in a way that would allow her to grow into the repair, and later on – if she wanted to – have cosmetic surgery for a ‘cleaner’ look. We love her belly-button-dooder; a name that my sister and I came up with for ALL belly-buttons when we were kids – it’s just fitting for Emily though!
Left: Emily with her omphalocele compressed and ready for surgery (March 1st)
Top Right: After surgery (March 2nd)
Bottom Right: Repaired omphalocele still a bit swollen post surgery (March 8th)
There have been a few curve balls thrown our way, but thankfully nothing too crazy. Her Fentanyl course was completed on Saturday March 5th, but the next day we both found her generally agitated and fairly inconsolable when we held her. After we left CHEO that evening, the resident on duty called us at home to say that Emily had been diagnosed as having withdrawal symptoms (sneezing, trouble feeding, tremors, sweating, generally inconsolable for an extended period of time). In order to manage this they began a course of oral morphine, which they would gradually step down by 20% every two days. Given this schedule, we calculated that it would be at least 10 days (from the start date) before she’d be fully weaned from her pain medication. The good news is that the morphine has definitely helped and her withdrawal symptoms (which are assessed by something called Finnegan scores) seem to be well in control right now. She still has her sweet, sweet (very small) morphine doses every 6 hrs, and she sometimes sleeps with one eye open – waiting for her next dose!
The last hurdle that Emily – and all NICU babies – must pass is learning how to fully feed. She was originally being fed by via IV through a PICC line in her foot, but after the surgery the doctors introduced milk fed through a nasogastric tube (i.e. into her stomach via her nostril). She tolerated this, so the doctors gradually increased the amount of milk in each feeding and decreased the IV intake to the point where the IV feeding completed on Thursday March 10th and the medical team removed the PICC line on Friday March 11th. Emily still needs to learn how to fully feed orally rather than via an NG tube – but we are getting there. What’s challenging her is that she seems to have narrow nasal passages – and since babies breathe almost exclusively through their noses, it’s hard for her to make the suck/swallow/breathe mechanics work if the breathing part isn’t working and one nostril has a tube in it. We all a really rough day Tuesday March 8th when the nurses tried twice to get her to feed and both times ended with her being really stressed, crying for over an hour and her respiration rate working itself up to the 110’s or even 120’s. Even when not stressed the nurses could hear her laboured breathing over the sound of the machines.
Luckily on Wednesday March 9th we had a nurse from the previous weekend return to her care and she had a novel idea for the breathing issue – after discussing with the neonatologist, the nurse moved the NG tube from her left nostril to her right nostril. Immediately things became 100% better for Emily, to the point where she started on the path to feeding that same day! It’s still a work in progress, but we know that Emily – like all other babies, NICU or not – will get there in her own time. The bigger challenge she has over most babies though is her excessive gas issue. The air in her belly causes her great discomfort when she is feeding or finished feeding. So, what would be a normal burp for a baby without an omphalocele is a bit more painful experience for Emily. She has even gotten to the point of waking up from a deep sleep, screaming in pain. The doctors put it into perspective for us: for 9 months she grew with part of her insides on the outside. Now that all of her organs are back inside her abdomen, they are all trying to function as intended, in the same space. Luckily, this is the only real ‘issue’ and they will all get there, but in due time.
The ENT (Ear, Nose and Throat) team came to see Emily today and take a look at her nasal passages – just to be certain that what she was experiencing was normal and there was no other blockages or anatomical issues. They indicated that although she had a ‘small’ nose and passages, she was in the normal spectrum and we have nothing to worry about and that over time – with her growth – this issue should resolve itself.
Emily’s NICU passport is getting lots of stamps! We have moved pods twice in the past week – we were in Green, but then moved to Pink (like a private room with a sliding door!) – but have since moved back to our original Yellow. None of the moves actually mean anything other than they are filling the pods in the front rather than the back for (low) NICU capacity reasons.
One of the questions we are being asked by our friends and family on a daily basis is “When is Emily coming home!?!” Unfortunately, there has been no indication as to what date she will actually be discharged on. Again, it’s really all up to how well she fully feeds at this point. She needs to feed on her own for a full 48 hrs before they will give her the ‘go-ahead’ to leave NICU. So, until then, Emily will need to stay in NICU for the time being. We are hopeful though that she will be home in no time at all … until then – please enjoy these photos: