One last ride

by cheryl@cheryl-campbell.com on August 27, 2013

Remember those 3 things that babies have to accomplish before they can go home from the NICU? They need to be breathing on their own, without any spells. They need to be able to hold their body heat. And they need to be feeding on their own and gaining weight.

Audrey had accomplished most of the breathing requirement at Mount Sinai, arriving at the Level II with no breathing apparatus. As her brain matured, the spells slowly disappeared. And then, about 2 weeks into her Level II stay, I arrived to discover that she had been moved to a cot successfully. That was an exciting day. All that remained was feeding. But that turned out to be a huge obstacle in ways we hadn’t imagined.

When we arrived, Audrey had just started to work on NNS: non nutritive sucking. Basically, she was learning to breastfeed but wasn’t actually getting milk yet as she wasn’t strong enough. She soon started to get some milk, but not enough. That was when things got tricky. Somehow, they had to determine how much they should “top up”, using her tube. At our Level II, they used a weighing method, whereby you weighed your baby before and after every feed. It was assumed that the difference in grams was the equivalent of ml’s that your baby had taken in by self feeding. That was deducted from the “full feed” and the difference was then “dropped” into her tube. The math (hardly my strong point) was done by me.

Audrey was slow, and the feeding process took about 45 minutes (including the “top up”). She was on a four hour schedule, so four hours after the feed began she was fed again.

It was a struggle. She just didn’t seem interested. I started to suspect that she was too full from the previous feed. The doctors were saying that she simply wasn’t taking enough.  They had figured out a “full feed” based on her weight. I was working with the lactation consultant (LC) on a nearly daily basis but progress was slow. I asked about moving her to “ad lib” (removing the tube feedings and seeing if she could get enough on her own) to eliminate the potential hunger issue,but encountered resistance. The LC encouraged me to be patient saying she was “such a small baby”. Of course, by this time, Audrey was over 4 lbs, more than double her initial size: hardly small to me!

Then, on January 22, I fed her and lay her down in her cot. Her feed was dropped, and I hurried off to pump, as it was still necessary and my only chance. I emerged from the pump room about 15 minutes later to discover the nurse practitioner and about 4-5 nurses crowded around her bed. For the second time in her short life, I saw my baby blue, but in this case she was an ashen grey. The nurse practitioner had “bagged” her and was administering oxygen. I rushed over and asked what happened and was told she had a spell. I stood by her, stroking her head and telling her it was okay. The nurse looking after her told the nurse practitioner that she had discovered a large amount of milk in her mouth, perhaps she had choked. And another nurse looked at me and asked, “Didn’t you burp her properly?”

Those five words hit me like a blade. Could I have done this?

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To see

by cheryl@cheryl-campbell.com on August 26, 2013

One of the worst things about having a critically ill child, is the knowledge that they are going through pain. In the NICU, babies are exposed to significant pain and suffering. Some of it is as a result of standard tests and procedures. One of the worst offenders is the ROP exam.

ROP (short for Retinopathy of Prematurity), is a disease of the eyes caused by prematurity in which cells grow abnormally. In  worst case scenarios, babies can be blinded. In decades past, this happened quite often (Stevie Wonder is a famous example). But then it was discovered that high amounts of oxygen had a big impact, so changes were made to how preemies were given air. In addition, medical procedures have improved, and eyesight can often be saved if the disease is caught quickly enough.

So, there are good reasons for the exams. But they are uncomfortable to say the least. The squeamish of you may wish to skip on to the next paragraph. The baby is given eye drops to dull and dilate the eyes (those with kids can imagine how popular that is). Then, the opthamologist holds the eye open with a tool, and shines a bright light into the baby’s eye, while manually moving their eyeball around. The baby’s nurse is responsible for holding down the baby while this occurs, and parents are generally asked to leave.

On January 8th, Audrey had an ROP exam at the hospital. We were asked to return in 25 minutes. When we returned, the opthamologist was still performing the exam, which went on and on. We sat around the corner, hearing our baby scream. When we were finally allowed back to her, we were informed by the opthamologist that Audrey had stage 2 ROP. She would need to have weekly exams until it resolved.

Our suspicion was that the opthamologist performing the exam (a Fellow), was not very experienced with the exam (which is quite specialized). That seemed to be backed up by comments I heard about the excessive length of exams that day. The following day, I noticed when I arrived that Audrey was not opening her eyes. Further examination revealed that discharge from her eyes had caked them shut. As well, the tool had left a permanent mark on her eyelid.

This was the moment when we stopped being “easy” and started to be the “difficult” parents. Thinking about her next exam, and worried that she would once again be subjected to the inexperienced Fellow, we made our issues known and demanded that the staff opthamologist do her next exam (which he did). It was our first major experience with advocating for our premature child.

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Moving on

August 22, 2013

After the ventilator came off, things moved much more quickly. While her parents were expecting more setbacks with breathing, Audrey had made a jump and wasn’t going back. On December 28th, she was taken off of CPAP, and given small amounts of oxygen (“low flow”) through nasal prongs. And then, while we were visiting on […]

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The season

August 20, 2013

As we approached Christmas, we had a lot to be grateful for. My clots hadn’t caused any further issues, other than that the Warfarin (pills) was taking a while to work.  I, (not a needle person), was having to self inject every morning. It generally took me 10-15 minutes to accomplish the job after numerous […]

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Finally

August 19, 2013

December 17th turned out to be a big day, even though we didn’t know it at the time. Once again, Audrey was extubated and put onto the CPAP. We waited for the news that she was having too many spells and needed to be moved back to the ventilator. But it never came. The next […]

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Milk

August 18, 2013

It was unusual that I was able to pump so much milk. Often, women who had preeclampsia struggled, as did those who had Caesarians. But, my success, combined with Audrey’s slow start to feeding, meant that I soon had an overabundance of milk. Both in the fridge at the hospital, and in the freezer at […]

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Removal

August 17, 2013

While I was developing my clots, Audrey was busy with the work of the NICU baby. She had another head ultrasound on the 12th which showed a small amount of resolution. She finally began to tolerate her feeds. The nurses increased the amounts she got very slowly but it was going well. On December 5th […]

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Not just the baby

August 16, 2013

I was coping. We settled into a routine. Geoff always went to work early, so I would go with him on the train. I would spend the day at Audrey’s side, taking breaks regularly to pump. And I worked a few hours each day for some private web clients. Their projects had been only partially […]

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Settling

August 15, 2013

After the incredible high of learning Audrey’s test results, things settled down, as much as they can in the NICU. As long as she was on the ventilator, she didn’t have spells which was a relief. But she couldn’t stay on it forever. She was on “room air”, which meant that she wasn’t receiving any […]

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The longest hours

August 14, 2013

Time in the NICU is a surreal thing. It literally creeps. Then you realize that you’ve forgotten to eat lunch and it is 7pm. But it was never as agonizing as in those two days. We knew the results would determine the colour of the days ahead. And I silently acknowledged that they might determine […]

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