It’s 4.45am as I write this. I’m partway through expressing milk with a breast pump while T is sitting next to me in bed bottle feeding our son who’s 6 weeks old. It’s been our nightly routine for about 3 weeks now. Before that, Gummi had spent the first few weeks of his life in the NICU fighting an infection that almost killed him – and that was one of the many reasons I had been kept away from my blog. Now that we’ve had time to settle in as a family, I felt I needed to pen my thoughts about the journey that brought us to this very quiet moment in the wee hours of the night – if not for the readers who follow my blog, at least for myself.
So the last few weeks leading up to my scheduled c-section were just filled with doctor’s visits and lots of bed rest for me. I struggled with low amniotic fluid, fluctuating (low) blood sugar, nausea/vomiting (even up till the night before) and then there was also the issue of Gummi being Frank Breeched. I was really looking forward to delivering my baby and having all the pregnancy issues magically disappear.On the morning we left for the hospital I was so happy that we even took some photos to document the last pregnant OOTD of 2015!Before delivery, my biggest fear at that time was the pain – I was afraid of the surgery and recovery itself. Of course, it turned out that I had gotten it all wrong. After a pretty painless and fast c-section, I was wheeled into recovery while T followed them to the NICU with Gummi. My diabetes caused my tiny (5lb 8oz) baby to have low blood sugar and they had T formula-feed him repeatedly throughout the day to stabilize his blood sugar. T became a pro at feeding and changing our son while I was in a daze and high from the morphine – the drug-induced shakes took about 2 hours to disappear. And when they were allowed to, they brought him to room-in with us. When I saw my son, I was so deliriously happy I announced that I wanted to do this again. I felt so much love for the tiny baby lying on my bare chest that I knew the problematic pregnancy I endured was nothing. Like many babies of Asian descent, Gummi had Jaundice and he was sent to the NICU for phototherapy when he was 2 days old. After 2 1/2 days, they cleared him of jaundice, discharged him and we went home happily together. But our happiness was short-lived.
2 short days after we got home, he was admitted into the NICU again. What started out as the post-discharge Well Baby check-up with our pediatrician became a nightmare that dragged on for 2 weeks. Gummi’s Bilirubin levels had spiked and they were at a level that was considered to be dangerous and brain-damaging. At St. Rose Sienna, the doctors told us he was exhibiting signs of kernicterus. We were told to be prepared – cerebral palsy, deafness, blindness, brain damage etc, because his was one of the worst cases they’ve seen. My world collapsed. I was overwhelmed with anger and hopelessness. When they told us he had to be transferred to Sunrise Children’s Hospital immediately for exchange transfusion, we were given no choice and were told that it was the only way we could save him (only later were we told that our insurance didn’t cover this hospital and he had to be transferred out after the transfusion, at the risk of another infection or pay the full cost of his treatment out of pocket).
Other than being reminded of the mounting medical bills, I had to watch every tiny limb, including his belly button become an IV or a line out as the medical staff tried to work around whatever they could. I remember just standing there watching helplessly as my tiny baby screamed his shrill cries of pain as he was continually pricked. While still recovering from my c-section, the physical pain was numbed because I was so emotionally distraught.
Over the following few days, I watched my week-old baby fight for his life as he went from the peachy pink colour he was born with, to highlighter yellow and what could only be described as zombie grey with a green tinge. I felt like I had let him down and that I made him defective. It wasn’t fair that he had to suffer like this.
In the duration he was at the NICU (subsequently transferred back to St. Rose Siena), he had a MRI, several EEGs, a lumbar puncture (spinal tap), amongst multiple blood draws daily for more testing and even had to be fed via a tube through his nose. My baby’s fine veins were so stressed that they all collapsed one by one. There was nothing we could do except watch and cry. And cry I did. This wasn’t how I had envisioned our new life as a family. I felt shortchanged.
Mostly though, I felt so alone and far away from my support network. Even T who’s usually more collected, buckled under the pressure. He asked me if I had taken pictures of Gummi on the day he was admitted. He had forgotten what our baby was wearing that day. I knew in my heart of hearts that my husband was starting to fear the reality of losing our child, that he was thinking that it would be the last picture we would have of our child outside the hospital and my pillar of strength was crumbling too.
As soon as she could, my youngest sister bought an (overpriced) ticket and hopped onto the next flight here from Singapore, distributing her workload to the mercy and kindness of her colleagues. Just so she could be here with us. My mother wasn’t due to come till a week later and she couldn’t get her ticket changed. I really needed them all.
Over the last few weeks, I shared some of my thoughts and pictures of the on-going situation on my personal Facebook as well as (in a much more limited capacity) on Twitter and Instagram. There was an outpouring of support, goodwill and positivity that radiated from those near and far. While I couldn’t have replied to every one of those messages, I made sure I spent time reading them and it really helped me through the last few weeks. When we finally got Gummi home, we didn’t want to let him go. We were so afraid of losing him and all we wanted to do want to hide him from the world to protect him. Save for the daily trek across the valley to different specialists, we just stayed home and kept to ourselves. I guess all we could think of was to prevent him from getting sick again, especially since nobody could tell us what caused his bilirubin to spike and how to prevent it from happening again. Our pediatrician even said that with all his ailments and the different doctors/therapists he’s seeing, our son is a walking pediatric encyclopedia.
Now that we’ve had our son back for 3 weeks and settled into a routine, I feel more confident. While we still don’t know what is wrong with him except for a bad luck case of UTI that almost took his life, we were told that he’s growing stronger every day and that we should stop being fearful and just enjoy him. Starting with short walks around our neighbourhood (in his pram), we managed to venture out to Olive Garden, a neighbourhood Thai restaurant called Benjarong, IHOP and The Cheesecake Factory. Slowly but surely, our little baby will get to know the world – not just the confines of our home, hospitals or clinics.
So that’s the short version of what’s been up… If you’ve been following me on Twitter and Instagram, and sending me positive messages of encouragement, thank you. Thank you for helping me get through this very dark period. While we don’t know what the future holds and how much damage has been done (until he’s at least 2 years of age), we are going to enjoy every minute and savour our time together. Will he ever talk? Can he hear? What can he see? Will he walk? We don’t know. Only time can tell. But we’ll get through whatever other hurdles lie ahead, as a family.