Day two.
Ehsaan and I had a rough night. I was in unbearable pain from my c-section and I was distraught, crying as I realised how serious Inaayah's situation was and how I wasn't able to care for her as a mother should. Ehsaan had been equally disheartened, trying his best to cheer me up and keep positive for both our sakes. Neither of us slept the entire night, so he'd sat beside my bed, holding my hand, hugging me, kissing me, reminding me how well we're doing and how far we've come. He promised that as soon as the doctor checked me over again, he would personally take us both to see our baby girl. And he'd been true to his word. Right now, I'm on my way to the NICU, wrapped in a soft dressing gown and clutching a blanket to keep Inaayah warm. It had been one of the first baby items we'd collected –Ehsaan had chosen it and bought it home from work one day whilst we were still in Dubai as a gift for me, and it was finally going to be put to good use. We washed our hands for five long minutes to rid ourselves of any germs that could be brought into the babies' intensive care ward. Seeing so many tiny bodies fighting for their lives made me so incredibly sad, but knowing that each of them had strength within them to fight to see another day was truly inspirational. We were led to Inaayah'sincubator, and a nurse lifted her out and removed her breathing tube so we could hold her and spend some time with her. I'd brought some milk up with us as her mouth is too small to latch on for me to breastfeed her so I'd been pumping milk to nourish her instead. It's 9am and we intend to spend at least a few hours with her before leaving for my check up with the doctor. We snuggled her and played with her while she was awake, we fed her and changed her tiny nappy, we soothed her as she cried and held her close to us as she slept. A while later, a nurse came and asked us if we wanted to give Inaayahher first bath.
"Yes I'd love to!" I squeaked, and Ehsaan wheeled me over to the bathing station. He helped me stand up and supported me as I shifted my weight on my feet. The nurse had prepared warm water and cotton balls for us to clean her delicate skin, and as Ehsaan held her out over the soft fleecy towel, I gently cleansed her tiny feet and fingers, wiped her eyes and washed her fine hair. We put on a fresh nappy and wrapped her up in her new blanket, before laying her back into her crib to sleep peacefully as the nurses re-installed her breathing aid.
I myself was in desperate need of a shower, I'd been too numb to yesterday, so when we returned to my room, Ehsaan got out some new clothes for me and led me into the bathroom. He stayed there while I washed, making sure he did anything he could to help, and assisted me in washing my long hair. It felt amazing to finally be clean after giving birth, and I eventually felt good enough to walk around a little. The doctor came back to examine me that evening; my stitches had healed fairly quickly so he removed the staples and left the remainder of stitches in place till their work was done. He'd mentioned that I should be ready to be discharged tomorrow, but that made me nervous, as Inaayahwould be going in for her follow-up surgery tomorrow and I didn't want to spend a minute away from her.
Ehsaan went out and got us some food, and we called our parents, who wanted to come and visit us, but we said there was no need as we'd hopefully be home soon anyway.
Day three.
Baby Inaayah's next surgery starts in exactly one hour. I stood outside the NICU, my hands pressed against the glass as I watched doctors and nurses surround my sleeping daughter. Ehsaanwas back in my ward, with the doctors as he signed off some papers and was going to go and collect my prescriptions and medications from the pharmacy downstairs. I decided I'd come right up here instead of following him around, and after he'd forced me to eat breakfast, he agreed, saying,
"You go on ahead without me, I don't want to tire you out. You need to keep your strength up. You need to stay strong. Okay darling?" He was so understanding of my feelings, and didn't hesitate to accommodate to my every need. He was my rock during this difficult time, though I knew he was suffering too.
Today's surgery is vital. It determines our daughter's future. It determines her quality of life, and in turn, ours.
When Ehsaan came back up we went in to spend the last few moments with Inaayah before taking her for her operation. We took pictures together and undressed her before covering her in her blanket and kissing her. The doctor came to meet us,
"Hello doctor," I said, smiling as Inaayah squealed in her sleep.
"Good afternoon. Right, we're all set for Miss Inaayah's surgery. Fingers crossed, it goes as well as the first. Now, this is a much more complex operation, and there is no guarantee that this will be the end to her problems at all. You are already aware of the risks I assume?"
I gulped and Ehsaan squeezed my hand and responded,
"Yes, we had a meeting with her consultant."
"I see, well then you are aware of the possible complications. We'll do our best, but don't lose hope, okay?" I nodded, not convinced, "Okay then, let's get moving. Do you want a moment with her before we take her in?"
"Yes please"
We kissed her one last time before the team returned.
"Take good care of her, Doc? And do what you can, please" Ehsaan said desperately as the doctor shook his hand.
"I'll do my best Sir."
We left the NICU, scared out of our minds. Since I've already been discharged, there's nowhere for us to go and be alone, so we sat in the Paediatric waiting room in silence, before I admitted,
"Ehsaan, I'm scared."
"So am I, darling. I'm terrified. But we have to have hope, we have to have faith –Imaan"
We stayed there for 3 hours, by which time both of us were exhausted. Ehsaan had begged me to let him take me home to get some rest all day, but I'd refused, saying that I had to stay close, that our child needed my proximity, and that if anything happened, I had to know. Eventually though, I gave in. My body was in pain and I needed relief. So I let him take me home, but I couldn't leave the hospital empty of family whilst our daughter was in surgery, so I called Sami and passed on his number to the hospital so that if something happened and they couldn't contact us, they could at least contact him. After all, he is Inaayah's guardian, protective Uncle, and biggest supporter.
Ehsaan and I lay on our bed, but neither of us could sleep. 4 hours into the surgery, 3 left to go. After an hour in bed, we both got up and Ehsaan made us some coffee. We prayed and then sat downstairs, not picking up our phones to anybody, waiting impatiently for the doctors to call.
I had a feeling in the pit of my stomach –a bad feeling that I tried so hard to ignore, but it kept re-emerging, each time stronger.
I told Ehsaan and he said he'd have been lying if he didn't admit the same, so we got in the car and drove. We arrived at the ward and asked if there had been any updates. There wasn't, of course, as she was still in surgery. But we sat on the seats outside the operations area and waited.
And waited.
And waited.
It felt like a lifetime had passed, but at half past ten that night, Ehsaan's phone rang loudly in our silence.
"Hello!" He said, not realising the emotion he spoke with.
"Good evening sir, are you and your wife in the hospital?"
"We are, yes"
"Alright. Well, will you be able to come up to the neonatal ICU please, the doctor would like to speak with you."
I looked up - that can't be good. Tears filled my eyes but I shook them back. NO, Aleena pull yourself together! He didn't say anything's wrong. Stay positive!
"Um, okay. We'll be right there."
He quickly stood up and so did I.He kissed me on my head and took my hand in his. I've never ran more desperately in my life. I had stitches, I was weak, but I ran alongside my husband –hand in hand to our helpless daughter.
We burst into the office, adrenaline rushing through our veins.
"How is she?" I demanded.
"Sir, Madam, do take a seat, please." the doctor said kindly.
Oh no.
"You were, of course, aware of the condition of your daughter's heart prior to birth, right?"
"Yes," Ehsaan said bluntly.
"Well, we operated almost immediately after birth and she seemed to be doing okay considering the condition. Of course it wasn't like other babies. She is still premature and weak and very unwell."
"Which is why she went for another surgery?" Ehsaan finished.
"Yes, in hope that completing this operation would help treat her defect."
"But?" he demanded. I could barely breath, the panic in his voice was evident, and mirrored the anxiety hammering at my heart.
"Surgery began smoothly, but around halfway through she began to lose a lot of blood. We managed to get it under control, but towards the end of the operation, it was clear that the heart just wasn't pumping blood round her body effectively. Her blood isn't flowing as it should be, and her other organs aren't responding well."
"You mean she's in a worse state now than she was before she went in?!" His voice was rising and I could feel his anger from beside him.
"Unfortunately it seems that is the case. But don't lose hope, we're going to do all we can to try and fix it."
"Yeah, you will!"
"I really am sorry." Ehsaan huffed and I grabbed his hand to try and calm him down, even though I was far from calm myself.
"Now we have two options going forward from here. We can go in for another surgery and hope for the best, or we can forget operating further and see what happens in the next few days."Neither of us said a word and he just stared at us in silence.
"I think we need some time to process and discuss this" I finally said.
"Of course, but please do let us know soon. Time is of the essence now"
How can we put our fragile daughter through yet another operation? Was her life not already painful enough, barely three days into this world? But what if we don't and we lose her? How could we live with ourselves then?
It was just too much to handle, and I broke down, and Ehsaanbroke down. In the middle of the doctor's office. Nobody to comfort us, or to hold us tight and reassure us and tell it was all going to be fine. We were vulnerable in that moment, and the last thing we needed was for science to come and bite us in the face with the horrid reality our lives were becoming.
Such a rollercoaster, I thought. When we're alone, the three of us, its bliss. But when we're alone, the two of us, discussing the fate of the third, its horror.
A horror no parent, or any soul for that matter, should ever have to endure.
Day Four.
Ehsaanand I were at the hospital non-stop. Only going home to shower and change before returning while the other stayed to watch over Inaayah. We were running off little to no sleep, and the energy we were using was exhausting. Both our families had begged us to come home, to sleep in our bed, to eat, to take care of ourselves as well as our child. They even offered to stay at the hospital whilst we go home. But we were stubborn people, and when we had our hearts and minds set on one thing, in this case our sick child, we wouldn't budge from our decision.
And it was a good job we did. We were sat by her incubator this morning, when suddenly her monitors starting beeping sporadically and she began to shake. I clung to my husband and screamed for a nurse to help. It was the most terrifying moment of my life and I couldn't bear to watch. They told us later that she'd had a seizure –as a result of blood flow to her brain. If this happened again, we might not be so lucky, and if we hadn't called for help when we did, she wouldn't be with us now.
Breathe in, breathe out. That's what they kept telling me. It's important you breathe dear, that's it. It'll be okay.
No, it won't be, I thought, but I couldn't say it out loud. It would only become a reality.
Ehsaan and I no longer knew what to do. We were at the mercy of the doctors now, and all we could do was pour our hearts out to Allah in hope that his mercy and compassion could help us.
The doctor called us again today, and said that the way things were looking, we now had two very distinct options: surgery with no guarantee of success, or life support.
Although Ehsaan and I had initially been adamant we put her through surgery to correct her ailment, it was evident that her body wasn't reacting well to surgical intervention, and we'd been advised by various healthcare professionals that the hospital as well as our families had contacted. In the end, we called our parents, who were all together at our house. Baba and Papa are very close friends with our local imam, a respected man with a very high reputation. His family were all in the medical profession, and after consulting with him, we came to the difficult decision of rejecting surgery if she continued to deteriorate. Because it is clear to everyone now- surgery is not helping her.
The hardest decision I have ever had to make –in essence, we'd just agreed to put our daughter on life support if her body fails further. Ehsaan and I were utterly inconsolable, but we knew it was the right decision, to prevent her from feeling more pain than she was already going through.
The prayer room in the hospital is now our sanctuary, the NICU our haven and the outside world an unknown territory we were afraid to venture into.
Day five.
All day, every day. Holding Inaayah close, breathing in her delicious newborn smell, talking to her –telling her how much Ehsaan and I love her, and how much we're rooting for her to fight off this problem so we can all go home. We'd spend the entire day here with her, and through the window we could see it is now getting dark outside. We'd have to leave the NICU soon, but we wouldn't be going home, we'd be right outside on the cold seats that had become our new home this week.
"Excuse me, are you Miss Inaayah's parents?" a man from behind asked in a foreign accent.
"Yes, we are" I responded as Ehsaan stood up.
"Great, I was hoping I'd get the chance to speak with you today. My name is Doctor Hillsbridge, or Simon." He shook Ehsaan's hand. "I don't actually work here, but I'm a cardiologist, originally from Johannesburg, but I work at a hospital in Northern Ireland now. Anyway, I was speaking to one of the surgeons here, and she told me about your daughter. I have to say, I'm very interested in her case. I'm just going to have a look at her notes, but from what I've heard, I don't think this is the end-point. I've dealt with a similar patient before, and there's a procedure which I participated in with the team which meant we could correct the blood flow and help rearrange the cardiac tissue. The child was older, and the case less severe, but it was successful. I've been asked to assess whether or not your daughter would be able eligible for such a surgery, is that okay with you?"
"Okay with us? We were just about giving up hope. Of course it's okay. We will do anything - anything - to see our baby healthy and safe."
"Great, I'll be working on her files tonight. In the meantime, please take my details so you can contact me with any questions or for any information."
Oh my Allah.
Just as we are losing hope and beginning to drown in premature sorrow, a miracle comes our way. Dr Hillsbridge had just come to us proposing a way to save our child's life, and we are absolutely, most definitely, going to take it.
Day Six.
Inaayah is doing so well. All her vital signs are normal and we were elated at the progress she is making. She now opens her tiny eyes and they are perfect –soft and hazel with gold stars swimming in them under the light. They're just like her daddy's –I told Ehsaan. Watching the two of them together made my heart soar, baba and baby, the best possible combination and a relationship that would always flourish. Dr Hillsbridge called us this morning with good news: Inaayah is a prefect candidate for the prospective surgery, but it wouldn't be able to be performed for another week. That meant 7 more days to hang on tight, cling to life with all her might and fight to stay with us. Just seven more days, baby –you can do it.
Our families had come over to see her today. Her condition meant that she was confined to the NICU but everybody had come and were standing right outside, visible to us and us to them through a glass screen separating the ward from the scary, outside world. We watched them all with her in our arms and held her up to see her family. Everyone was positively obsessed with our little girl, showering her with gifts and love and fighting over who is going to be her favourite aunty or confidante or best friend. Whose name is she going to say first? Who will she cling to when she doesn't want Mummy and Daddy to take her home? Which qualities and habits will she pick up from each of her amazing role models?
One by one, they all washed their hands and entered, spending quality time with the new addition. Every single person my husband and I cared about and loved, Inaayah-Imaan had them all wrapped a thousand times around her little finger. It was a beautiful bonding to witness, and would be treasured forever.
They all spent the entire afternoon here, and that evening, our hearts were so full, but Ehsaan and I couldn't leave. Something was holding us back. We didn't know what, but we knew we had to be there.
The evening was peaceful, and everything was beginning to look good. Baby girl is doing well. The doctors are happy with her progress. Her surgery has been scheduled and she was confirmed to be an ideal candidate for the procedure. Ehsaanand I were starting to feel a little better, and it was only in each other that we could seek comfort and serenity that was impossible to find elsewhere.
Day seven.
One week old. This time last week, I was in early labour and getting ready for our daughter to arrive safely. Today, alhamdulillah, here she is. Safe, and sleeping peacefully. She looks beautiful when she sleeps, so serene, and tranquil, and dare I say, free from pain. Her little chest moves up and down with every labouring breath, her one hand wrapped around my one finger, her other wrapped around Ehsaan's. He quickly snapped a picture of all our hands, clasped in each others, our happy place.
Soon, it was time for the nurses to take Inaayah to be assessed by the cardiac surgeon again. In the meantime we left the ward to go to the cafeteria and grab a much needed coffee. We weren't gone long –maybe 15 minutes, but before we left we kissed her and whispered in her ears as we always did whenever we left her,
"Allahfiz our sweet angel, mummy and daddy love you. We won't be gone long, we'll be back really soon, I promise. Stay strong, princess. You'll be back in our arms before you know it"
Today we told her the same thing again.
Only we weren't prepared for what the next few moments would bring us.