Op day

Little H’s operation would have been simple, in a way, if not for his small left heart. In some ways when people think negatively for holes in the heart, Little H’s hole was what helped his left heart grow. But that wasn’t enough because then there was a combination of both oxygenated and deoxygenated blood in his heart. That’s where the other phases of the operation comes in. 

Can’t understand most of the diagram Dr Shankar drew and explained to us, but I tried using Google to help me decipher surgeon language. 

The first thing they needed to do was to repair the coarctation. This was done by an incision on the left, not an open heart. 

The next step was where we got lost and worried, because it required Dr Shankar and his team to open up our little boy’s chest and his heart. I had to force tears back down and the doctor even told me there was no need to cry, no need for tears (and he pushed the tissue box away for added effect). The process was called Damus-Kaye-Stansel procedure or DKS in short. 

As with any surgery, this was high risk and he outlined what were the possible complications. The procedure was a modified one because of Little H’s size (he’s still not reach the 2kg mark). We were warned of the possibilities of him needing the ECMO machine if his heart was not able to manage the stress and sustain him. The operation would take place on 13 June, Little H would be 21 days old. 

That morning we came down to spend some time with him. The little Warrior possibly knew he was going for a big battle. That was the last moment we saw him with fewer tubes, alert and punching and kicking and fighting. They had to intubated him again and then sedate him as they made the transfer from NICU to the operating theatre. We followed until the doors to the OT slid shut. 

From there it was a wait, 10 hours, before the hospital would call us and give us an update. We went home to rest and I woke up several times looking at the clock and praying so hard for everything to be alright. It was 6.30pm when the hospital called and told us that Little H would be back in the NICU in about 15 to 30 mins. It was a huge relief to know, even briefly, that he was ok and resting. 

The beautiful month of Ramadhan

It’s the last day of Ramadhan. It has been a challenging one for us, one that has tested our iman (faith). We have been very fortunate to have family, friends who have been supportive and encouraging for us in this difficult time. Not only that, the nurses in the two wards (ward 24 and 46) especially, have been a great source of emotional support. Our visits to see Little H are often filled with smiles and a sense of light-heartedness as these nurses calmly and patiently explain to us the equipments surrounding Little H and his daily updates. 

The doctors are great too, but while they update us on Little H’s state, sometimes it’s the nurse’s touch and gentleness that eases our hearts more. 

Little H turned a month old yesterday, 23 June. A month of challenges and everyday he fights and fights. I have never been so proud of him, of his resilience and determination. 

We’ll get through this ok my love? 

Doctors say that they will wean him off the ECMO soon. First they’ll need to see if his lungs are ok enough to sustain his body. We pray for the best and prepare ourselves for possible challenges. Insya Allah, the Almighty will guide us through this. He has already blessed us with this precious human and for him to be born so close to Ramadhan, can only mean that He loves our son too and has planned for the toughest of battles to happen during this holy month. We pray that the days to come as Little H is prepared to go off ECMO, that He may ease the burden for our little Warrior and ensure a smooth transition to recovery. 

Amin. 

The fear of not knowing

It is the unknown that is terrifying. Not knowing what happens next, what comes next. It is the lack of any true tangible knowledge or fact or decision that can drive a person close to madness. When you have the knowledge, you are prepared. And when you are prepared, you have the strength. 

Most times when it feels like it’s so bleak, it’s because we don’t have the right information. We are placed in a realm of what ifs and what not and it makes it difficult to function because you play every possible scenario (usually the worst) in your head. 

It isn’t that I numb my feelings. I still worry and fear and spend my nights struggling to fall asleep because I’m trying to stay away from that dark dark path. Yesterday as I stood waiting to brave a heavy downpour to get a new pump, I told myself I was doing this for Little H. Little H is my source of strength and whatever courage I need to face this. 

With cold and soggy shoes and feet I made the journey. I realised the past weeks I was a little afraid to venture to the hospital on my own. I leaned on the strength of the husband, of others. In the midst of several wake up talks, it dawned on me. If I kept depending on others, how can my son depend on me? 

Today, although I brought my aunt and cousins in to see my son, I did not leave when they did. I chose to stay because my little boy needs me. Even if I cannot be inside there when they drain his chest or do whatever else that needs to be done, he should know that I’m still around. That I can be around, alone, for him to depend on. 

Only for you son. 

Faith

In every adversity that the Almighty puts us on, He tests us. Verily,  He would not give us more than we can bear. Verily, He loves us all, his imperfect creations. Some may question the battles and trials they are put through. If we are patient, if we keep Him always at the forefront, then we will be able to savour the sweetness that is His gift to us. His blessings. 

Little H’s test began before he even saw this world. We were tested when he was 21 weeks. 22 weeks. 23 weeks. We were tested when he was still small for his gestational age. We were tested when they wanted to induce early. But Little H had other plans. He had made the choice, that he would come out early, and that he would fight this as fast as he can. 

It’s what I like to think. 

I am an imperfect creation of the Almighty. I am flawed, I had made mistakes, I have sinned and erred in my ways. Times when i end up blaming myself for all Little H has to go through, I have to remind myself. That this is His will. He reminds me that verily with hardship comes ease. One of the tenets of this faith is patience. And to give in to His will. For He knows what is best and He has something greater planned for all of us. 

So in Him I trust, wholly and completely. 

PICU

No child, no infant, should have to go through what he does. But my son is brave and strong and he is a fighter. 

He is my Warrior Son. 

As much as the sight of the tubes and blood makes me feel nervous, I will brave it for him. I know those are what’s keeping him alive. Those are what’s helping him win this fight. 

A new set of faces, a new set of names to remember. These ladies in the PICU ward will watch over our son and keep him safe. Watch him like a hawk and be there swiftly to render any help or medication that he might need. 

I leave my son in their capable hands tonight. It’s been a long night. I’m so tired and I want to sleep but my head is filled with so much and yet I cannot pin down, narrow down what’s inside. Clouded. Worry. Concern. Fear. Sadness. I fight it. 

Mummy is gonna try and sleep now ok Little H? So that I can see you again and be with you later. I’m always here my love. Always. May I see you in my dreams. Maybe in dreams I’ll get to hold you. 

I love you always, with every fibre of my being. 

Ya Allah, the Almighty, watch over my son tonight. Keep my son safe. Heal my son and purge the sickness that plagues him. Oh Allah, give him the strength, give him the will. 

Ya Allah Ya Tuhanku. Selamatkanlah anakku. Pulihlah anakku. Ringankanlah beban anakku. Mudahkanlah urusan anakku. Ya Allah Ya Tuhanku. Yang Maha Pengasih lagi Maha Penyayang. 

My dear son, 

I know it’s hard for you. I hope that you don’t feel the pain. I cannot begin to describe. Today we were on our way to see you. We geared up, all happy with the knowledge that the doctors said your chest would be stitched up tomorrow. That your vitals were good and that you were on the way to recovery. 

But life is like a rollercoaster and this seems to be a recurring pattern, that each time when we look forward to a small piece of good news, that something else happens. When the nurse called my heart had already leapt to my throat. Hearing her say that you were very sick had me sick with worry. As your father rushed to find a parking space for the bike, I rushed up to the NICU. No one could go in. There were so many doctors and nurses rushing about to save you. I prayed to Allah so hard to keep you safe, to protect you, to heal you. 

Your left lung had collapsed. There was a cyst. There was a lot of bleeding. Your heart couldn’t take the stress. Your brave little heart tried its best. They had to put you on the ECMO machine. At least then your little lung and heart could catch a break to heal. Oh my son. I’m so sorry that you had to go through this. I prayed that whatever pain you felt that it would be me instead to brave it through for you. 

You are the most precious and special thing in my life. I pray to Allah to forgive me, to forgive us of our errors and sins. I pray to Allah that He will guide you and bring you back to good health. In this month of Ramadhan, I pray that you will get better. Fight this fight. I fight it with you. Your father fights it with you. Everyone who loves you has been praying so hard for you. Your nenek, your atuk, your uncles and aunties. We all love you so much. Fight hard my son. I fight this with you. 

I love you so much. I want to hear you cry again. I want to see your eyes open. I want to see you wave your arms and your feet again. I want to see you punch through the plastic wrap that keeps you warm. I want to hear the sounds you make when you sleep, like the recording that I have in my phone. I want to feel your tiny fingers wrap around mine. I want to smell you, kiss your forehead. 

I want to finally be able to hold you. To cradle you. To smother you with kisses. To have you feel and hear my heart beat in time with yours. 

My dear son, there is so much waiting for you. And I can only pray now for you to be strong. For you to get better. For you to heal and recover. For you to come home. 

I love you. Please know that. Please know mummy loves you. So much. So very much. So much more than anything else in the world. As much as I love Allah. 

I love you. 

Ya Allah, keep my son safe. Look after him, protect him. Ya Allah, heal my son. Please Allah the most Gracious the most Merciful the most Loving the most Giving. Save my son Ya Allah. 

The waiting game 

The waiting game started that evening when we got the call. Little H went into a slight cardiac arrest. His PDA was closing and his lungs and heart couldn’t manage the stress. I was quite devastated. Earlier that morning I had visited him. They had taken out his feeding tube, he was looking all happy and cheery. I played with him and watched him doze off with his pacifier. The doctor even told me that I could finally carry him the next day, once all the lines were out. 

So when that phone call came I was expressing milk. My brain just went blank for a second because I couldn’t understand. Everything looked good the past few days. Everything seemed fine. And then this. I couldn’t accept it. 

We rushed down to the hospital and the doctors and nurses were trying to get the cannula in. Little H had been struggling so much whilst they put in the ventilating tube to help his lungs. There were so many bruises and puncture wounds all over his little arms and legs that I just couldn’t stop the tears from falling. Just praying and wishing I could take away all his pain and discomfort. With the ventilating tube in, he couldn’t cry. From that night, I hadn’t heard my boy cry. I could see his face scrunch up from the discomfort but I heard nothing. It broke my heart. It was hard for my brain to register the peaceful calm baby I saw this morning with this one who had new wires coming out and new tubes. And now because of the breathing tube, they had to put a towel across his head which covered his eyes to stop him from moving so much and potentially dislodging the breathing tube. They put him on morphine to keep him calm as well. 

My precious active boy with the wriggly hands and feet had been pinned down and spent most of his time in drug-induced sleep. Sometimes he would be awake, his eyes would open, and we’d talk to him and sing to him. We’d tell him that everything was gonna be alright. That he just needs to ride it out. That we were riding this with him. I prayed for him every time. I sang and hummed to help distract him when the nurses had to change his diaper or suck the secretions our from his lungs. The husband talked to him and soothed him, telling him that we’re there and he’s there and he’d come visit any chance he could get. 

The doctors couldn’t give us a definitive date yet when surgery would take place. When we thought it would be tomorrow but then they changed their minds. Little H wasn’t big enough, he was still under 2kg. He was small and they needed him to be bigger. Eventhough his milk input was increasing, but the little guy wasn’t packing on the pounds still. 

It got easier to see him. To stroke his hair and his arm and back when we could. To warm his chest and hope that our touch would give him comfort. I had to be stronger. The husband had earned me that Little H knew if I was sad, he knew if I was crying. If mummy was crying, how could he be strong? So I had to suck it in. I had to remind myself that I needed to be strong for my little Warrior. My little Warrior who’s ten times braver and stronger than I am. 

So we visited. Everyday. And we waited. Everyday. And even when his condition had stabilized (my boy is seriously brave and strong), we waited. 

And then the waiting ended. And we had a definite date. And then we realised that the surgery was not going to be as simple. As we initially thought it would be. 

NICU 

The NICU is filled with babies, most of whom were premature. Tiny, small, wrinkled. Our son was born at 37 weeks and 3 days. He had just reached full term but he was small, at 1975g, but damn if he wasn’t the cutest thing I had ever seen. Active with his arms and legs flailing about that the nurses had to resort to putting his hands in mittens and pinning it to the bed so he wouldn’t dislodge wires or tear down the plastic sheet that was helping to trap heat and keep him warm. 

Thinking back, the number of wires on him and coming out of him then was nothing compared to now. 

The nurses in the NICU are the best ever. Constant care over little H and always updating us and answering our every question about him – feeding, weight, his heart, his breathing, basically everything. They adored little H as much as we did and we tried to get to know and be familiar with as many nurses as we could. It gave us peace of mind and assurance knowing that when we couldn’t be around 24/7, there were all these angels who were looking after him. They talked to him, sang to him, soothed him, comforted him. They fed him, cleaned him, changed his diapers, made sure that his iv tubes were placed nicely and neatly and his bed was always so well-kept. 

There was one nurse who really made the difference. She helped take pictures of little H when his eyes were open and awake, when he was feeding and gave me comfort when during his surgery. She held my hand when I was too afraid to see little H after his major op and she walked through all the machines that kept our little Warrior stable. All that, made the difference for me, for us. I could rest at home knowing little H was in good hands. 
Little H has had amazing guardian angels from the very first day that they brought him into NICU. Their reassurance, confidence and the gentleness with which they showered upon my baby made the past 23 days bearable. It’s thanks to them too that I felt strong, that I could be strong for my boy. 

They may never find out about this blog but if they ever do, Thank you ladies. From me, from little H. I cannot express my gratitude enough for the amazing work that you do and the amazing care you provide not just for little H and us, but for all the babies and the parents in the NICU. 

Thank you. 

Happy birthday my son

It’s been awhile since I last updated. So much has happened in the past 3 weeks, moreso because our little boy decided to pop out early to say hello. I was totally unprepared for labour, because we were still 3 weeks away from D-day. 

The morning of 22 May I woke up to really bad cramps in the stomach. Panicked a little because this wasn’t something I had experienced before. I started timing and they were coming in every 15 minutes, the pain lasting for about a minute and then going away. Read up and thought it was just pre-labour. Even asked my God sis who have given birth a few months ago if she experienced this, which she did. Didn’t think about it much because pre-labour can last a week and I was thinking damn, this much pain over the next few days? Oh well. 

I called the NUH delivery ward just in case and explained what I was going through and all. Nurse said it was normal and only if my water burst or that I was bleeding, then I should consider coming in. So fine. That was like 9 in the morning and the husband and I were all like, let’s just take a nap and rest and see how it goes. Fast forward to night time and we were about to have a rather later dinner. I was on the bed trying to find a position that was comfortable enough to bear all the cramping pain when I felt something start to slide down my leg. You know that feeling when you just got your period and you know it’s blood and not anything else. 

Jumped into the shower, looked down and yeah. Blood. Start panicking. Told the husband we needed to go to the hospital and he was just about to savour his Teh tarik. Called the delivery ward again to let them know what happened. Nurse said could be a false alarm. False or no, I was going to go over to get some peace of mind. Booked a Grab, waddled slowly to the delivery ward together with my mum in tow and checked in. After all the checkup, doctor said I was 4cm dilated. Like what? Isn’t that fast? Too early? You mean I was already in labour? Eh? 

Changed clothes, peed a number of times, suffered through the contractions until I finally told the nurse that ok let’s go get epidural. By then we came in at 1030ish at night, epidural at about 11ish. The whole epidural thing would have gone smoothly, if I wasn’t such a big chicken. I hate needles and I hate kot knowing what’s happening but I think i wouldn’t have been able to cope had I known what was happening. The husband was by my side throughout the whole thing and the doctor was telling me to bend my back and all towards her. Of course I also know that her fingernail was actually codeword for needle. Don’t know how many went in but apparently, a lot. I just needed the relief because the cramps, were starting to get mighty intense. 

Poked and strapped and lying down one would think the pain would go away or at least be less intense. After all, the husband said with epidural I got a 70% discount on the pain. But it wasn’t the case and Allah Almighty the next few waves I started crying. The machine was a little faulty and instead of dispensing the 10mg, I was only getting 1mg. The doctor had to be called back, with a new machine, but in that time she told the nurse to check me. 

“She’s full.” 

Which is codeword for I am all 10cm dilated and this baby is gonna come out whether I’m ready or not. Cue the delivery doctors and the neo natal team who were ready to transport our boy over to the ICU once he came out. They gave me gas until I had to start pushing and then it was like sets of 3 pushes. Think I pushed a total of 12 times before the doctor told me to stop and I felt something on my stomach. 

When he cried, I cried. Time check, 139am, I was in labour for 3hours and I was done. 

We didn’t have a chance to see him. It all happened so fast. One moment on my belly and the next they whisked him away to get measured and then onto the ICU bed because his oxygen levels were low. 

I didnt get to hold or cradle or carry or even see my son proper that night. I don’t blame them. The team had been briefed on our boy’s condition and they were on standby, fast and swift in making sure he was quickly stabilised. 

I was stitched up, wheeled to a ward to recover. By then the husband had left to send mum home and I was alone. I would only be able to see my son the following day. It was a lonely night. Womb empty. Arms empty. A blank dreamless sleep. 

Scan continuation

We went back the following week for the scan with Dr B. As usual it took some time before the nurse called us. The doc was attending to another case and so the nurse scanned me first. We hoped that baby would cooperate and be in a good position for them to see. When she did get a somewhat better view, she called Dr B in and he continued the rest. 

Somewhere in between some other doctors and nurses came in and studied the scans. I told myself not to look at the monitor and just calm down. Hard though when the doctors are right beside you and you caught enough jargon to know that the borrowed hope you were living on had just *poofed* like that. The interrupted arch was a real thing. He asked if we went for amnio, I still don’t want to do it. He confirmed what Prof had told us the previous week and recommended that we see Dr S who is a pediatric cardiac specialist. She would give us better insight and understanding. 

I had been to an excursion earlier on that day and was filled with good vibes and happy thoughts. That 30 minutes changed everything. Try as I could, it was hard to contain the fear, worry and anxiety I felt. All I could think of was that it was all my fault. I hadn’t been as diligent with  my supplements, the husband had chided me too. Even despite what the doctors said – that it wasn’t anything that I could have done to avoid this – I felt horrible. It was my mistake too, in delaying the talk with the insurance agent about getting a maternity insurance plan… Before we found out about all of this. So many things weighed on my mind and heart. I felt so exhausted. 

A close friend had accompanied us that day and helped bear some of the sadness and pain of the day’s events. Dinner was a quiet sombre affair. 

We went home, reading the report given by Dr B. He suggested we do amnio (again) to karyotype (because it seemed like it was a confirmed case of a chromosome deletion) and Fish test for both DS and 22q.11.2. There was mention of an evolving hypoplastic left heart. Later that night I read up on it and my heart sank further. At this point, it was hard to describe what I felt. Mostly numb, fear that turned into crying and general… I won’t even call it sadness or depression. But it felt as if someone took all the sunshine and flowers from your soul and bleached it grey.