Our day was the literal rollercoaster of emotions – from being anxiety riddled while waiting on Becca’s major surgery, through to happiness and elation over the birth of our daughter, and then down to concern and panic over Charlee in her current state.
Seeing a loved one in an intensive care unit is heartbreaking. Seeing infants in such a situation is all the more painful and traumatic.
The specialty care nursery is what’s known as a Level II neonatal intensive care unit (NICU). They provide care to infants born at more than 32 weeks’ gestation and weighing more than 1500 g who have physiologic immaturity such as apnea of prematurity, inability to maintain body temperature, or inability to take oral feedings.
This was Charlee in a nutshell… or rather, in an incubator.
With Charlee moved to the SCN, I was asked to come by and speak with the nurses there while registering for a card to access the room. Becca waited back in our room, as she was still on Percocet and other pain medication, having literally just had major surgery no more than 12 hours ago.
The nurses advised that we were going to be on a strict feeding schedule to try and bring Charlee’s blood sugar levels up while they were being supplemented via IV. This would involve us arriving bedside for Charlee around the clock, every 3 hours for feedings, however in our reality, this meant the following:
Having been upgraded to the deluxe suite (in which we would no longer be sharing family bonding times with our infant), we found ourselves at one of the furthest points from the specialty care nursery. Becca was having difficulty sitting up in bed, let alone the fact that she was unable to walk or even use the bathroom at this point (TMI, but she was still on a catheter, which was to be removed just before our first initial visit).
Fortunately for the first of our feedings slated for midnight, Becca was given the use of a wheelchair. After struggling for about 10 minutes to comfortably get Becca into the chair, I slowly wheeled her into the SCN for feeding.
This attempt unveiled a few issues.
Firstly, the IV that Charlee had in her left hand, limited the number of comfortable positions for breastfeeding – an issue that had not been present in the recovery room when she was latching so well.
Second, Becca’s recovery from surgery also lent itself to make even the most basic positioning for Charlee incredibly painful.
And last, Becca’s milk had not come in yet, so even the limited amount of colostrum was tough to get to Charlee and once in her, it would need to make a fairly large impact to her blood sugar levels.
Be that as it may, we pushed through, and Becca and I were determined.
After an hour of feeding – some attempts resulting in just soothing more so than feeding, but other times quite successful), I wheeled Becca back to the room for a rest before starting at it again.
It was 1:30 in the morning when we returned to the room and 2 AM by the time I got Becca back in bed. Forty five minutes later the alarm went off and it was time to start at it again.
This time however, Becca needed to pee. We managed, but it took time and was incredibly uncomfortable and by the time we were done, I couldn’t find the wheelchair.
I hailed the nurse down in the hallway, and she advised that there was only one wheelchair for the floor and we couldn’t keep it for ourselves. Becca was going to need to walk it.
For an able bodied person, we’re talking a 2 minute walk – literally.
For someone who has just had major abdominal surgery within the last 24 hours, much longer.
We arrived at the nursery around 3:30 and were greeted by the nurse ripping into us about how important it was to stay on schedule and that the baby depended on us for this so she could get nourishment.
Not the guilt trip we were looking for.
I held in my frustration, and Becca went about feeding Charlee again.
This time the walk back after feeding, got us to the room closer to 5 AM. This time I set the alarm for 5:30, and after an impossibly short sleep, we were up and at it again.
Becca gradually healed more and more, but her progress depended heavily on pain medication that needed be administered by the main nursing team in the maternity ward. The same nursing team that were late to every checkup for vitals, impossible to reach, left us in recovery for 7 hours, couldn’t adjust the temperature in our room, served Becca solid food twice when she was not allowed it, neglected to place an order for a liquid dinner until after the kitchen closed, and also insisted on hoarding the one and only wheelchair.
We continued back and forth like this to the SCN approximately 48 times over the next 3 days.
We were exhausted, physically and emotionally.
Meanwhile, in the SCN, Charlee was doing ok, but for a span of 18 hours, I could not hunt down an on-call paediatrician to find out what the plan was with my daughter! As far as I knew, she was tapped into an IV until her blood sugars levelled, but how could we tell, and what were next steps?!
Finally I found a paediatrician who advised that the plan was to continue feeding Charlee breastmilk and supplemented breastmilk from pumping, while at once weaning her off the IV watching carefully to ensure that her body temperature and blood sugar levels stayed constant (above 36.6 degrees for her body, and above 2.6 (or ideally 3) for her blood sugars).
As the feedings continued we began to see a light at the end of the tunnel! Low and behold, Charlee’s body temp and blood sugars were staying strong and we watched the IV level drop from 11.5 millilitres per hour, to 10.5, 9.5, and all the way down to 2.5.
But then suddenly, a dip.
Her body temp dropped and her blood sugars fell to 2.5 – not what we wanted.
The nurses discussed with the paediatrician and it was decided to bring her back up to 3.5 ml/hr.
Another feeding session. Another measurement. Another dip.
She was brought back up to 4.5 ml/hr and the incubator temperature was cranked to 33.5 degrees.
We were at a loss – why wasn’t this working? What were we doing wrong? Charlee’s other vital signs were immaculate and she was otherwise a perfect little baby, albeit a tad jaundiced. What was going on??
Doing the math at that point, we realized that the expectation was for Charlee to wean off the IV down to zero, and then have 3 successful feedings off IV, out of the incubator, and still generate the appropriate body temperature and blood sugar levels. If we were at 4.5 ml/hr and they were reducing by 1 ml each time…. with the feedings 3 hours apart, we were talking 8 feedings, or a full 24 hour cycle.
Saturday night was probably the worst feeling. Becca’s pain levels were high, and the nurses in the main ward versus those in the SCN were continuing to be very inattentive and uninformed. Becca needed her pain medication in the short window before attempting to walk down the hall for feedings otherwise she would be in excruciating pain. That night, the nurses opted to double Becca’s dosage at midnight to “help alleviate” the pain.
While Becca may have seemed fine for the actual feeding, when that medication wore off it was like dealing with a heroin addict being forced through rehab. She was vomiting, and in pain, with nothing I could do but hold her hair back, find her a plastic bag, feed her some water, and help coach her through the discomfort.
It was the best of times, it was the worst of times.
We kept muscling through the walks, the feedings, the heartache of not being able to stay with our baby, and the frustration of not being able to get proper, timely information.
When we look back, we kind of realize the irony of having the healthiest baby in the NICU. The healthier you are, the less priority you have there, and hence our predicament.
And then something oddly miraculous happened Sunday night.
First off, during one of our routine feedings, Becca noticed that her breasts were much fuller, and she was definitely getting more food out into Charlee. We even did a test and weighed Charlee before and after the feeding, and she gained an incredible 45 grams in one sitting!
As Becca and I finished a feeding in the late afternoon, we said our goodbye’s to Charlee and headed back to the room. While we were gone, just as Charlee was settling in at her usual levels of 4.5 ml/hr of glucose being pumped into her veins, the IV started to malfunction.
Normally this would be a sign of worry, but our nurse kept a keen eye and ran some impromptu tests on our little energizer bunny.
When we returned 3 hours later, she advised that IV’s in tiny bloodline’s like Charlee’s, can have a tendency of failing and needing to be replaced. However for the window of time that Charlee was without the IV, she miraculously kept her body temperature at 36.6 degrees, and her blood sugars at 3.5… all on her own!
The nurse then went on to say that we no longer needed to wean and we could jump straight to the three IV-free feedings needed to satisfy the paediatric staff and send our little Charlee home!
We were elated!
But wait… it got better!
Our obstetrician came by for a check up on Becca and advised that she was all clear for being discharged. We could finally leave our deluxe suite of horror. Our angelic nurse then advised that she had secured a room for us inside the actual SCN, where they usually house out of town parents who need a place to sleep and monitor their child.
Faster than you could say “cheque please!” we were bagged and shlepped down the hall, into the SCN, and into our new room.
If things couldn’t get any better, would you believe they even took our baby out of the incubator, and brought her into our room for the very last feeding? Everything was turning up Charlee!
One sleep later, and 6.5 hours of paperwork (not even kidding), we were finally discharged from the NICU, and I wrapped up our little Charlee in her brand new car seat to take her to her real home.
The last four days were some of the most trying on our souls. The combination of lack of sleep and the emotional turmoil of dealing with a baby in the NICU is overwhelming.
I am very much aware that in spite of all this, we got off easy. As I casually mentioned, Charlee was the healthiest baby in the NICU, and several times our nurse rotation mentioned how they rarely get to see babies that big in the SCN. Charlee’s neighbouring incubators had premies weighing as little as 3 pounds, and several times there were emergency situations that had our nursing staff running in all directions.
I have many takeaways from this experience.
First and foremost, it’s ok to ask questions, push buttons, and hound people down for information. This was my child, and my priority, and I had to put at least one nurse and paediatrician in their place to remind them of that.
Secondly, if you’ve ever needed to have a situation that tests your relationship, this is one, and not to toot our horn, but I think we passed with flying colours.
I cup fed my baby, while Becca slept. She fought pain and frustration, with emotional anguish, yet kept it together and never lost her beautiful nature. One morningI woke up late, around 3:30 – 30 minutes past our scheduled feeding time and flustered as I thought I had slept in and not woken Becca.
I found this bedside:
That, ladies and gentlemen, is love.
And it’s with that love that I now will be raising my beautiful daughter and beginning a phase in my life that I’ve been anticipating for years.
And I couldn’t be happier.
Stay tuned for the third and final part, Hello Charlee, My Name Is Dad – My first week with baby