Brain Hemorrhage

Waking Into a Nightmare

/ bperica / 2 Comments

When the doctor ordered a head ultrasound on you to finally put to rest any doubts we had about your head size I was comfortable with the call. Why not just check? I felt confident that nothing was going to come of it. However, as the day of the ultrasound approached I had this horrible feeling. I probably only have my imagination to blame. I guess I got hung up on a worst-case scenario and dwelt on it too long.

You did wonderfully during your head ultrasound. Your arms were flailing a bit and we had to hold them down, but you did not mind the cool gel in your hair or the foreign environment. We were there for less than an hour and went home awaiting results. We did not expect to get results that night while we were finishing dinner. Mom answered her phone and I did not think anything of the conversation until she pulled the phone away from her ear for a second to tell me it was your doctor calling. I knew a 7pm call from the doctor the day of your head ultrasound meant only one thing, he saw something he did not like. I sat at the dinner table and stewed, bracing myself for the next punch to the gut. What am I about to hear? I looked at you on the living room floor, trying to get mom’s attention while she spoke to your doctor, wonderfully out of touch with the news being delivered to us.

Mom told me that the doctor was concerned about the size of your ventricles. Out of caution, he recommended a consult with a neurosurgeon, which would most likely be preceded by an MRI. Mom explained all this news about you very well, even trying to calm me as the doctor tried to calm her, explaining that large ventricles may not mean anything right now. The consult and MRI are out of caution so we can really see if something is not going as planned in that big head of yours.

As Mom called her parents and delivered the news, I had to lie down on the floor with you. I clutched you as you crawled over me, not even taking my hand away to wipe the occasional tear from my face, letting them slide down my cheek and drip onto the carpet. I wanted to cuddle with you. You wanted to play. I had to call my parents too so Mom took you upstairs and you fell asleep on her.

Going to bed that night I was wishing I would wake up and remember that this was all part of a bad dream. I guess that is the great thing about having a bad dream. You wake up and there is an instant when you think the dream was real, but then you really come to and you remember with delight that none of that bad stuff you dreamt about happened. But the next morning it was the opposite. I came out of a great night of sleep and then as soon as I remembered the new reality I wanted to go back to sleep. I wanted to forget again. It was so good, that peace I had during sleep, and now it had slipped away and I did not want to face the day without it.

To be continued…

Heart, Lungs, and Brain

/ bperica / Leave a comment

Starting with the discovery of London’s PDA on February 2, London’s day of life 3 (DOL 3), Kate and I were in for a whirlwind of diagnoses. We chose to treat London’s PDA with a course of indomethacin. Early on, we were told that London’s extubation relied on getting the PDA to close up. On February 4, we arrived at the hospital during a follow up echo. One of London’s primaries was there that morning. She lined up some chairs for Kate and I and my parents and said, “Sit down and watch the movie.” She was referring to the monitor where the image of London’s heart was visible. My mom had a very hard time watching it. She started crying a lot and had to excuse herself. She later said that the situation was much more real that morning than the night before, when she and my dad first saw London. To me, this was one of the first signs that Kate and I had been assimilated by the NICU. Watching another echo on our daughter was just part of the journey. We had not become numb to the alarms and the busyness of the NICU, but already we were growing tolerant of life there, teetering on the edge of tragedy and triumph.

The next day, when we found out the results of that echo, that London’s PDA had only closed a little, we were somewhat discouraged. We followed up with another course of indomethacin and on February 6 we were told London did not have any symptomatic signs of a PDA. However, on that same day, London’s oxygen settings on her ventilator increased to 50-55%. Finally, on February 11, we were told London’s PDA had officially closed. Had the drugs not worked, a minor surgery might have been necessary. We were so thankful we avoided that.

IMG_2935

Day of Life 2

Meanwhile, London’s oxygen requirements were not decreasing, if anything they seemed to be going up. This was due to her chronic lung disease, which many preemies get. X-rays showed London’s cloudy lungs, indicating there was quite a bit of unwanted moisture there. Her bronchopulmonary dysplasia was classified as severe. For this, London had Lasix as well as a weaker drug Aldactazide. Ultimately, these drugs seemed to provide only temporary fixes to London’s lung condition. London received caffeine for apnea of prematurity. The caffeine was done following a last dose on March 20. Much later on she received Prednisone therapy, which meant that she got shots every day for 10 days. She was then, and still is, one tough girl. She sometimes never reacted to the needle and when she did, it was a whimper.

As if concerns about her heart and lungs weren’t enough, we threw in the brain as well. The good ole’ trifecta. On February 6, London’s first head ultrasound revealed a Grade III R>L hemorrhage. I think for both of us this continues to be the scariest complication. We had an outstanding fellow that week who assured us that for years the literature on head ultrasounds has concluded that brain bleeds are not predictive of the quality of life later on. The scale for these hemorrhages is 1 to 4, with 4 being the most severe. Because of London’s brain bleed, she had to be monitored weekly with head ultrasounds to ensure there was no parenchymal bleed, i.e. Grade IV. Luckily, there was not. By the time London received her last head ultrasound in the NICU, the week of May 12, the bleed had been completely reabsorbed into the body, but her ventricles were still not as small as the doctors hoped they would be, but this was still not worrying to them, at least not to the point that they wanted to do anything else.

From the night the doctors got London out of Kate in 25 minutes, I have been in awe of modern medicine. Nearly every day in the NICU I marveled at procedures being done on London or on one of the other preemies (hey, sound travels pretty easily from one pod to the next). I felt so thankful that it was 2014 and not much earlier, like when babies with Grade III hemorrhages weren’t even considered viable by many doctors, thus ending the treatment of the babies with such bleeds. To know that London’s life would have been considered unviable decades earlier breaks my heart. The current view of brain bleeds is an advancement of medical knowledge that to NICU parents is a damn miracle. It is one of many we experienced during the 109 days we hung out with London in the NICU.