August 2013

The best day

August 30, 2013

This entry is part 23 of 23 in the series The Story of Bug

After moving to ad lib feeding, Audrey continued to gain weight. She was taking bottles at night and doing quite well with those as well. Talk moved, as it had in the past, to a date of discharge.

After her big spell, I was more then a bit jumpy. Whenever her monitors went off (and they did quite often as the pads attaching them to her skin would get worn), I would freak out. The nurses would tell me, “Don’t look at the monitor. Look at your baby. If something is wrong you will know.”  A few times, they removed all of her leads and let us walk around the nursery with her.

There was lots to settle before we got her home. She would need to go to Sick Kids for eye appointments every week until her ROP resolved. She needed a pediatrician before she was discharged because she would need to visit within 3 days. There would be other specialists too.

Preemie parents go home with a laundry list of problems that may affect their child because of prematurity. Babies born at ELBW (extremely low birthweight: under 1000 grams), have a higher risk of cerebral palsy, hearing loss, vision loss, SIDS, autism, developmental delays, mental deficits, decreased IQ, learning disabilities, severe respiratory infections, ADHD. You name a potential problem that parents of young children worry about and the smallest preemies are probably at higher risk.

We rushed out to buy a carseat. Luckily, we were able to find, in a store near our apartment, the only model that seemed to be available at the time that was approved (in the US) down to 4lbs. She would need to pass a car seat test to be released: sitting in the seat for several hours without having a spell. She did indeed pass.

Finally, a date was set to try the Care by Parent room: February 4th. It was a room within the nursery with a bathroom and a little bedroom with a pullout couch. Geoff and I would sleep over, and Audrey would be removed from her monitors and moved in with us. It was very exciting. But possibly more than that, terrifying. What if she stopped breathing?

The night passed without incident. Geoff rushed off to work to quickly settle a few things before her discharge, hopefully later that morning. Then a nurse came to the door with news. Audrey was due for her ROP test and the opthamologist would be coming by, either later that evening, or the next day. It was looking like she would have to stay. I asked with trepidation who would be doing the test. She saw my face when she told me that it would be the same Fellow who had done her earlier test.

When I emerged from the room, upset and a bit angry, she was on the phone. She told me hurriedly that she was trying to set something up. I watched from across the room as she frantically worked away on the phone, writing on forms. Finally, she told me that she had managed to get Audrey into the opthamology clinic at Sick Kids. It was today, so we would have to go on our way home. I was immensely grateful to this nurse, who I didn’t even really know for working to tirelessly to get my daughter home as fast as possible and for helping us to avoid another potentially traumatic eye test. I quickly called Geoff as we would need to leave soon to get there in time.

In the end, there were no tear-filled hugs, or cookies to hand out. No one asked us to stop for a photo to put on the graduates wall. A nurse or two said “goodbye” from behind the nurses desk. And we slipped quietly out the door.

Audrey_Baby_Photos20080202175 Audrey_Baby_Photos20080205180

 

 

 

 

 

 

 

 

How is Bug now?

 

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The mom

August 29, 2013

This entry is part 22 of 23 in the series The Story of Bug

While the spell was happening, I looked at my baby’s eyes. For the first time, I saw fear and struggle reflected back. A massive knot was forming in my stomach. But she slowly started to come around, her oxygen monitor registering 100%, and her colour returning. The nurses left.

A while later, the nurse practitioner asked me to come over to her desk. She handed me an incident report and asked me to read and sign it. The words flew right in and out of my head. I can’t remember much of what was written there. Only that something (her oxygen saturation?) had dropped to 30. If I had been thinking clearly, I would have had a lot of questions. I never did see that form, or any written reference to her big spell again.

Instead, all I could think of was the nurse’s implied accusation. Had I caused this by hurrying off to pump and not burping my baby? I was terrified of the answer but I asked the nurse practitioner anyway. The answer, to my relief, was no. This was backed up by the doctor, who I asked when he came to check on Audrey a few hours later. I had not done this.

As the following hours passed and she seemed okay, I began to think about my belief that she wasn’t eating because she was full. This was a baby who had struggled for a long time with feeding intolerance. Perhaps her stomach was not equipped to handle so much food at once. I came to a realization. If she had been put on ad lib feeding, like I had been requesting, this may not have happened. I knew then, finally, what certain nurses and others had been telling me. No one knew my baby the way I, her mother, did.

For the second time at the Level II, I felt the need to take action to protect my child. I decided to ask again that she be moved to ad lib. This time, I did not intend to take no for an answer. I was ready for the expected concern that she was so small and would lose weight: she had already more than doubled her size and we could always go back if it was a problem. So I called in early the next day to speak to the LC. She wasn’t available. But, the nurse told me, a decision had been made to move her to ad lib.

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One last ride

August 27, 2013

This entry is part 21 of 23 in the series The Story of Bug

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

August 26, 2013

This entry is part 20 of 23 in the series The Story of Bug

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

This entry is part 19 of 23 in the series The Story of Bug

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 New Year’s Eve, the oxygen was removed. For the first time, she was breathing entirely on her own and we could see her face.

With that, she no longer needed the critical care of the Level III nursery. Efforts were afoot to get her a bed at a Toronto Level II. In the end, the very next day, January 2nd, was the day.

Transfer was a difficult and upsetting process. We were, of course, thrilled that she was doing so well. And we knew that the unit was full: sicker babies needed her space. But we had lived in that big room for 6 weeks. We knew the staff and other parents. We were attached to the nurses, especially Audrey’s primaries. It was comfortable and almost like home. Unfortunately, because it happened quickly, and because none of them were working that day, we didn’t get to say goodbye in person to her primary nurses. I hurried down to the bookstore downstairs and picked up cards to thank them. And then we were on our way.

That night was difficult. It was harder to leave her, when we didn’t know the nurses who were caring for her. But the following day, I walked in to discover two nurses who also worked at Mount Sinai. And shortly, one of the parents we had befriended at Mount Sinai walked in, following the isolettes carrying her twins. That was the biggest relief of all.

 

Sweet baby

New Year's Eve

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The season

August 20, 2013

This entry is part 18 of 23 in the series The Story of Bug

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 failed attempts, and it didn’t help that it stung so much.  At those moments, I was acutely aware that Audrey was facing daily needle pricks into her tiny heel.

Audrey was stable and still on CPAP. She was having spells, but we were told she would eventually grow out of them. On the rollercoaster, she was having mostly up days and we were starting to think of the day when she would be moved to a Level II  nursery. We were relieved, full of hope, and incredibly proud of her for doing so well.

At the same time, we watched families around us grappling with so much more. From Audrey’s bedside in front of the nurses station, I could read the board with babies expected soon, some of them earlier than Audrey. And we were also beside a separate room, usually used by the doctors. But one day there was, instead, an isolette. And later, a devastated family.

So we faced Christmas with a mix of emotions. Geoff was singing at our church for Christmas Eve. I sat alone, in tears for most of the service. We had gone to a baby store and done a twenty minute shop for gifts for our little girl. We wrapped them and brought them to the hospital early in Christmas morning. There, the nurses had created a stocking for her, and it had a few little gifts inside, including a photo of Audrey, wearing the smallest Santa hat ever.
Isolette at Christmas Christmas family photo

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Finally

August 19, 2013

This entry is part 17 of 23 in the series The Story of Bug

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 evening, after some strong encouragement from Marianne, the parent resource nurse, we attended a Christmas party sponsored by the Linden Fund. If I recall. we made the decision to save a bit of money on food (NICU parenting is extremely expensive).  It was one of the best decisions that we could have made.

Certainly, the food was great (a full turkey dinner), and helped to provide a tiny bit of normalcy to parents facing down their first Christmas with their baby in hospital. But the best part was that they invited NICU graduates. We watched kids walking around the room, talking away, who had once struggled to survive in the same place Audrey was now. And we talked to parents, some with stories much scarier than ours. We walked out feeling encouraged, at a time when it was feeling like it would never end.

Since she was on CPAP, Audrey was declared stable enough to hold. But Geoff had a cold and was scared of infecting her. Finally, on December 21st, he got to hold his daughter.

Daddy's first hold

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Milk

August 18, 2013

This entry is part 16 of 23 in the series The Story of Bug

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 home. I felt terrible for the moms who I saw everywhere in the NICU, desperately pumping with their baby’s photo, taking medication, anything to increase supply.

In the ER, after the doctor told us about the clots, I was given a shot of Enoxoparin (heparin). They were setting up an appointment for me at the thrombosis clinic, across the street at Toronto General, who would move me onto Warfarin (pills). But, the doctor cautioned, she didn’t think I could breastfeed while on Warfarin.

I was still numb to the reality of my own condition, but that news hit home fast. Breastmilk was the only thing that I had, as a mom. It was the only thing I could give her, and no one else could. If she didn’t get it, she would be at increased risk of infections, NEC. Now it looked like it would be unceremoniously cut off. Geoff reminded me of the supply already in the fridge and freezer, waiting for Audrey, and that she had already had the all important early milk and colostrum (higher in antibodies, fat).

At that point, we were allowed to go home, with the expectation that I would return daily for more shots until my appointment at Toronto General. By the following day, much of the pain had gone and I looked forward to my first proper sleep in a week the next night.

It was not to be. At about 2 am, we were back. I had coughed up some blood. It was finally decided that I had suffered a small infarction: part of my lung had died. It was a small enough area that it wouldn’t affect my life (although I was afraid to ask about singing). I wonder how big that infarction would have been if I had been sent home with Tylenol 3’s and no CT scan.

On Monday morning, when I walked into the NICU, I was greeted with the news that MotherRisk had been called. Warfarin was okay. I was never sure who had called but, as I literally felt stress fall from my shoulders, I was very grateful that they had thought to do so.

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Removal

August 17, 2013

This entry is part 15 of 23 in the series The Story of Bug

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 she again lost weight but then continued on an upward trajectory. She began to chunk up. She was starting to look like the baby I had imagined.

Finally, on December 11th, she jumped from 960 to 1010 grams! It’s hard to describe how exciting it was. The next day, we discovered a “Kilo Club” certificate at her bedside. Three days later, she reached full feeds through her tube: 14ml of milk each time. A few days earlier, her PICC line had needed replacing and they had just used an IV. Now she finally lost a wire for good: her feeding IV.

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Not just the baby

August 16, 2013

This entry is part 14 of 23 in the series The Story of Bug

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 done when Audrey was born and I felt obligated to continue. At night, I would get up occasionally to pump as well, although since I had good supply, I eventually stopped doing that as much.

I was exhausted. Once I got out of the hospital I was plagued for a time by shin splints. Then, around December 9th, I started to develop back pain. I had a history of back pain but it hadn’t bothered me for a few years. I figured it was from bad posture, slumped beside the isolette all day. So I made efforts to improve my posture and move around more.

The pain started to interfere with my sleeping as I was having difficulty lying down. Then, on the evening of the 13th it suddenly got even worse. That night I was unable to sleep at all. I was in no shape to go to the hospital the next day, so I stayed home.

Staying home and not seeing Audrey was horrible, and back medication wasn’t working. So the next day (a Saturday), we stopped in at the Mount Sinai ER to get some painkillers on the way to the NICU. The ER doctor thought it was just muscular and agreed to give me Tylenol 3’s. She seemed ready to let us leave.

However, she decided not to let me go just yet. She thought it was best to double check to make sure that I didn’t have a clot in my lungs. She said she didn’t like sending me for an unnecessary CT scan, but a blood test would be inaccurate in a postpartum mother. And, since I just had a baby, and a Caesarian, I was at an elevated risk.

Since it was a Saturday, we had to wait a while. But eventually we went with a technician and I had the scan. Then we came back to the ER and the doctor, now visibly shaken told us the results. I had “many” clots (pulmonary emboli) in my lungs.

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