It was finally the morning of the surgery. I had never entered an operation theatre in my life before so I had no idea what to expect. They asked me if I wanted to go for general anesthesia or epidural. I knew that general anesthesia would be great because I would just go in and come out without being conscious of anything in between, but I had been told that GA could make the baby groggy and that would mean that the neonatologists would not be able to do an accurate assessment of the baby's condition. So I opted for epidural. A note on that. Yes, you feel no pain at all but you can totally feel the tugging and pulling they do! I wasn't sure if that was normal so I actually turned to the anesthetist who was standing by my head and said, "Excuse me, I can feel some tugging. Is that normal?" (On hindsight it was quite comical for a patient in the operation theatre to say that in the middle of a surgery.) He assured me it was normal.
In about half an hour, the surgeon moved the screen separating my face from hers and said, "Congratulations! The baby is out." The baby is out??? What did that mean -- the baby is out?? "Of course she is out, but is she alive??" I wanted to scream. Well, she had said 'Congratulations' and they all looked pretty relieved so I figured the baby was indeed alive. They stitched me up and I was wheeled to the recovery area for a blood transfusion. Later, I was taken to the recovery ward, where finally I saw Viv. He told me that the baby had been immediately taken to the neonatal ICU (NICU) for assessment. Her Apgar score was quite good, 8 followed by a 9.
I could see she was already papa's girl. Viv's lucky number is 9 and his birthday is 9/9. The surgery was scheduled at 9, the baby's weight was 990 gm, her final Apgar score was 9 and she was born at 10:01 am. Where's 9 in that, you ask? Well, 1001 is binary for 9, isn't it? (When I pointed this out to Viv, he was so thrilled! Nerds of a feather flock together...)
My blood pressure continued to be very high even after the delivery and so I was still on full bed rest. Viv went down to see the baby and took pictures with his phone. She was covered with tubes and sensors all over. Trust me, that is not the first view of your baby you want. She had been classified as a VLBW, which has nothing to do with the LBW we all know and love. VLBW stands for Very Low Birth Weight, and such infants are at a high risk of... well, everything. The lower the weight of the baby, the higher the chances of complications are, including some long-term ones. The IUGR had made her smaller than regular babies born at the same 32 weeks.
Just when I thought Viv and I could just stop worrying about me and focus on the baby, we realised it wasn't so. My blood pressure stayed high and just wouldn't come down. They gave me a medicine called Adalat which quickly brings down the BP but also gives you the mother of all headaches. When I was asked to describe the pain on a scale of 1 to 10 (10 being absolutely unbearable), I gave it an 8.5. It really was. But what to do, Adalat ka yehi faisla tha. Heh heh! I read that the effects of preeclampsia could last for weeks or months after delivery so I really had no idea when I would have the sensors and BP cuff and the catheter (Ugh the catheter! Don't even get me started on that.) off me. Worse, they would not let me go see my baby. First, I wasn't allowed off the bed, and second, they were probably worried my BP would shoot up even more if I saw the baby in that condition.
Finally, after staying in the recovery ward for days (again, a place where most people stay only for a few hours), they said I could sit in a wheelchair (my stitches made it impossible for me to walk) and go see my baby who was in the NICU.
Let me give you a peek inside the NICU. Well, when you first enter, it's scary. Alarms are ringing everywhere, there are funny lights all over and you are greeted by the sight of many struggling babies 'trapped' inside glass incubators, with wires and tubes all over them. It looks like some kind of an heartless experiment at first, and you want to kill the evil guys, but then you realize that the 'evil guys' who are putting their hands into the incubators and 'torturing' the babies are actually the angels who are trying to save these innocent lives.
Viv wheeled me into the NICU and took me to her incubator. Even though I had seen her photos on his phone, nothing had prepared me to see a baby of that size, in an incubator, struggling to get the tubes off herself. It was really heart-breaking. I could hardly see the baby. Instead, I saw a tiny, fragile 'thing' with an eye mask covering the upper half of the 'face' and a large breathing tube with two prongs going into the nostrils, covering the rest of the face. Other tubes led from her hands and legs to machines. Where was my baby? She was in an incubator under blue lights (for jaundice), hooked to a lot of machines with alarms that seem to go on forever. I did not break down though as I had anticipated. However, looking at her in this condition, on all the different kinds of life support, I went numb.
As premature babies' bodies are not equipped to handle nutrition that is not through the umbilical cord, they had put her on the IV drip and were going to test her tummy for tolerance towards milk. Mother's milk is truly nectar for premature babies as it has antibodies which are critical to the infection-prone babies. The doctors had asked me to express milk and send it to the NICU for the feed testing. Now here's the thing. When your baby is suddenly delivered at 32 weeks, your body simply isn't prepared to immediately start producing milk. Here I was, placing an order for milk, when it seemed like my body had gone on strike and the workers were complaining that production could not start that early as the factory had not been set up. "Well, what can I do? The CEO is already here! Surprise visit and all that. You just gotta do it." Luckily, they were going to test her tummy using 1-ml feeds first so within a few days I was able to send that much (in a syringe no less)!
Meanwhile, they finally discharged me with a lot of strong BP medication. They also asked me to buy a monitor and record my BP at home three times a day. The doctors said that preeclampsia-induced high BP is something that can take its time to go and there's not much I could do about it other than taking medication.
After that, our lives revolved around hospital visits. I was up and about in two weeks, and even though the stitches still hurt, I often forgot that I had had surgery. The focus was just to make sure Xena was stable and putting on weight. I could not believe it -- I had put on 13 kgs over the course of the pregnancy, and my baby did not even take up 1 kg of it.
All babies lose weight initially and Xena did too - about 45 gm. I remember being so elated when she put back 7 gm of that. Who imagined we would be celebrating our baby's weight gain in grams? But Viv and I did.
Initially, her body rejected the 1-ml feed, but the next round was better. They started slowly increasing the feeds to 2 ml, 3 ml and so on. While regular newborns were drinking 50-60 ml, my baby was on 2 ml.
Her jaundice was very persistent. While it is common for newborns to get it, it usually goes away with a few days of phototherapy, while for Xena, it was on for weeks.
Daughter of the notorious Bhai, Xena had started her gunda-gardi in the NICU pretty early. She bullied the doctors and nurses and almost always had her way. They were sick of resetting the tubes and sensors because she would just pull everything out. At first she was on breathing tubes with 22% oxygen, but she kept pulling them off. They even folded a thick piece of cloth and placed it over her neck so her hand couldn't reach her breathing tubes. In spite of that, she managed to pull them off. It was her way of saying that she didn't need the tubes and could breathe on her own. Finally, the doctors shook their heads, rolled their eyes, and took off the tubes as a challenge to her. Lo and behold, she really could breathe on her own!
Most premature babies are passive and weak, and pretty much lie there in the incubator. Not Xena! The social worker allocated to our case (the hospital allocates a social worker to the parents of all premature babies) said that in her 12 years of working in the NICU, she had not seen a more active baby than Xena. All the nurses we met said, "Oh your baby is so active. She kicks and pulls away all the tubes!" One of them even joked that they were considering changing the 1-nurse-to-2-babies ratio and allocate a dedicated nurse just to prevent Xena from pulling out the tubes! She was so tiny that the nurses could just pick her up with one hand! (New meaning to "She's a handful." huh?) and yet so powerful that it was next to impossible to wrench away a tube from her tiny fists. "Fight the battles, baby, not the tubes!" I would tell her.
Her initial heart scan showed a condition called Patent Ductus Arteriosis (PDA). Basically an artery called the ductus arteriosus lets the blood bypass the lungs because the fetus gets its oxygen through the placenta. The ductus normally closes soon after birth so that blood can travel to the lungs and pick up oxygen. When the ductus does not close properly, it can lead to heart failure. In most babies, the ductus closes on its own, though in some cases it reopens. For Xena, it closed, but before we could celebrate, it reopened. Thankfully, it closed again and no surgery was needed.
Meanwhile, we registered her birth at the ICA and were asked to get her passport made within 42 days! There is no way we could get a photograph of her face or her thumbprint for the passport. So we had to get a special social visit pass made for her so she wasn't considered an illegal resident. Sheesh. Didn't think paperwork would be another thing to think about in the middle of all that.
She did well in the NICU, breathing on her own and putting on weight and tolerating higher feed amounts. In two weeks, she was stable enough to be transferred to the step-down NICU. This was also part of the NICU but it was for babies who did not need very intensive care. However, the very next night, we received a call from the hospital to say that she had had a very bad desat. I didn't even know what a desat was -- apparently it's when the oxygen saturation in the blood drops because the baby forgets to breathe. Apparently, Xena had stopped breathing and had started to turn blue. They managed to resuscitate her by putting in a ventilator, which is basically a tube that goes all the way to her lungs. She was transferred back to the NICU, all feeds were stopped and she was put back fully on IV again. We rushed to see her and she just looked so frail and helpless and there was blood around the lung tube.
The doctors suspected necrotising enterocolitis (NEC) as the reason why she had the desat, which really surprised us because NEC is a very serious condition related to the baby's diet, and breast milk is known to help prevent NEC. She had been fine on breast milk all this while. However, we found out that the nurse in the step-down ICU had given her formula milk for a day because she thought there was no more breast milk! You can imagine how furious we were because here we were, ferrying 7-8 small bottles of breast milk to the NICU every day -- there is no way the milk could have gotten over. When we asked her to check again, she found 12 full bottles! Breast milk plays a critical role in preventing NEC, and no wonder that within 24 hours of having the formula, she was back in the ICU. We read this scary article about NEC and were very traumatised to know that one in four babies dies of NEC.
So she was off feeds and on IV and antibiotics for a week, with 8-hourly scans. They also took took a lot of blood for tests and cultures and another transfusion was needed. Once she was stable again (and had kicked off the breathing tubes) she was transferred back to the step-down ICU. However, based on our last experience, we decided not to go over the top with joy. And sure enough, they told us that one of the visiting moms had contracted chicken pox so they were checking with the moms of all babies if they have had it before. I had never had it which means Xena did not have the immunity against it. They gave her a jab with antibodies, and luckily there was no adverse reaction.
By the time, she was 1 month old, she was stable again and weighing 1400 gms. They only discharge premature babies after they reach the 2-kg mark. She put on weight a few times but lost again to go back to 1400 gms. The weight loss was partly due to the energy she spent in crying. It was really heart-breaking to see her cry of hunger (her milk feeds were heavily calculated and controlled), pain and discomfort, but we could do nothing. They let us put our hands through holes in the sides of the incubator to touch her though.
Her next round of gunda-gardi involved the feeding tube through which they gave her milk. One day, she cried so hard, she got really agitated and pulled out her feeding tube all the way from her stomach! I nearly fell down with shock when I saw her waving the end of the tube at me in a "Look ma, no tube!" gesture. They put in a new feeding tube, this time through her nose. They tried to get her started on bottle-feeding but premature babies are not able to coordinate breathing, sucking and swallowing at the same time. Also, the doctors said that the effort she would have to make to take in milk any other way than the tube would be so much that she would lose weight, and their priority was to have her gain weight.
One of the doctors had told us that when it comes to premature babies, they take one step backward for every two steps forward. Sure enough, each time she made some progress, we got some bad news too. Premature babies tend to get hernias as their inner abdominal wall is very soft. Xena's abdomen scans showed two hernias. One was an umbilical hernia which docs said should go away by itself but the other was an inguinal hernia for which she would need surgery. Surgery on a baby of that size?! Doctors said that she was too small for surgery at that time so they would wait till she was about 2 kg. I was totally freaking out at the thought of her being under anaesthesia.
We found it difficult to follow the NICU visiting hours, as it was painful to leave if she was crying. We just had to trust that the nurses would pacify her. She was turning out to be quite independent though -- the other day, she was crying and the pacifier kept falling off. I had to leave and the nurses were busy tending to the other babies so I put the pacifier in her mouth and told her 'Mummy has to leave now. Will you hold your pacifier, baby?' and she did!! On one hand, I was happy that she could 'take care of some things herself' but it was also heart-breaking that a newborn didn't have her parents around all the time to tend to her needs.
When she reached the 1.5-kg milestone, she was moved out of the incubator into a cot. This meant that she was more 'accessible' to us and we didn't have to put our hands into the holes in the incubator just to touch her. She was still on the feeding tube though, as bottle-feeding was causing desat.
We had started kangaroo care, which is a technique where you hold the baby skin-to-skin. This helps to create warmth, security and bonding in babies who have to stay in the NICU for very long. So I would go down to the hospital for kangaroo care every day. About kangaroo care itself, well, if you can put your baby on your chest and button up all the way, that is one tiny baby. Viv also tried it once but I told him vainly his kangaroo care doesn't come with a value-added service like mine did. You see, I sang to the baby during kangaroo care. Muahahaha! Singing was easy. The tough part was choosing which song to sing. Of course, the big song those days was 'Sheela ki jawani', but that was perhaps a tad inappropriate for a baby. So I sang the title song of Main Hoon Na because I truly did feel like that about her:
Kiska hai yeh tumko intzaar, main hoon na
Deh lo idhar bhi ek baar, main hoon na
Khamosh kyun ho, jo bhi kehna hai kaho
Dil chahe jitna pyaar utna maang lo
Tumko milega utna pyaar, main hoon na
Of course, sometimes she took my words too seriously, especially when I sang "Khamosh kyun ho..." and she would wail to a degree that exhibited the exact opposite of khamosh. (Erm, she also cried if I went off-key. Sheesh.)
I would sing a different song each day and over the days, I found out which songs she liked. Main hoon na, Tinka tinka and Sau gram zindagi were her favourites. When I'd first heard the Sau gram zindagi, I loved the melody but I wondered what exactly what the words meant. Sau gram zindagi? 100 grams of life? What did that mean? Ironical that the song came to have its own meaning in my life, where we were literally counting the grams of life on Xena. Sometimes the wait for her to get home seemed so endless. I celebrated my first birthday as a mother without my daughter. I celebrated my first Mother's Day without my daughter.
We got so used to seeing her that she didn't seem small to us anymore. In fact, I pointed to one of the other babies and told Viv, "Look look, GIANT BABY!!!" He said, "Erm, that is not a giant baby. That is a regular-sized baby. Our baby is small."
On 30th April, she was finally moved out of the setp-down NICU into what they call a 'special care nursery' (SCN) where they trained her to bottlefeed without having a desat. The SCN was a crazy noisy place, with alarms beeping all the time, the only thing louder than those were the babies wailing ("I'm a celebrity, get me out of here!"). Xena quickly made herself at home, and I could totally imagine the gunda-gardi at night with the babies bullying the newcomer babies and demanding 'hafta' of the order of 'char peti milk'.
Xena did well in the SCN, but as usual, there was the not-so-good news. Her brain scan showed a small bleed. Premature babies are at risk of such haemorrhage, and doctors said that as long as it does not progress, it should resolve itself. Her heart scan confirmed the small hole that one of the doctors had initially suspected. She also had anaemia. The doctors will do follow-up for 8 years (!!) as premature babies are susceptible to a host of problems involving developmental milestones such as speech, walking and learning.
As for what caused all of this, the doctors are not sure. It had definitely something to do with the placenta, as the surgeon who did the c-section said that she found a large blood clot behind the placenta, which itself was half-detached. "We were surprised the baby hung on for so long in spite of that!" She said. Apparently, even a day's delay in the surgery could have spelt danger. I am just thankful that even though all this happened, Xena and I were in good hands. The doctors and nurses did such an incredible job taking care of us (and pretty much saving our lives) that I was ashamed that I had had doubts at some points about transferring to a 'government hospital'. I wish I could donate a large sum of money to the hospital, but their bill already made sure of that. ;)
Viv and I attended classes on taking care of premature babies at home. They even had a session on infant CPR, which we attended, hoping the entire time that we would never have to use it. We were very nervous about taking her out of the controlled hospital environment with all the sensors and monitors that alarmed as soon as something went wrong. Even when we held her in the hospital, we would be constantly watching the heart rate, oxygen level and breathing rate. We heard a horror story of someone whose baby went home to come back to oxygen support the very next day because she caught an infection at home.
Xena's hernia surgery was on 19 May. I still remember watching my tiny baby being taken into the operating theatre. When she came out, she was hungry and in pain, and was crying a lot. She was still on IV and they could not give her any milk, so they gave her a pacifier and she kept it on for four hours straight, hoping that maybe suddenly milk will come out of it. It was really heart-breaking to see that. Two days later, she was discharged. She was stable, could bottlefeed, and had recovered well from the surgery. Her homecoming on 21 May, more than 2 months from the time she was born, was a strange experience. We were excited and nervous at the same time. On her first night at home, Viv and I pretty much stayed up all night watching her, with the sole aim of keeping her alive (I kid you not.). We tried to recreate the hospital environment as much as possible so it would be easy for her to do the transition. We wash our hands every time before touching her. She is in an air-conditioned room all the time. Even at night, there is always a light switched on. She is not allowed visitors. Viv and I have not even kissed her face yet. When we feel like kissing her, we kiss the top of her cap.
Though she was born two months ago, medically she is considered a newborn as they count the age for all developmental milestones from 40 weeks of gestation. Xena is still tiny; we did not even buy any bottoms for her as the newborn tops reach her ankles! She has been home for over a week now, and we are still learning how to take care of her. The biggest challenge remains winning her trust. Premature babies who spend months in the ICU do not trust anyone. They associate human touch with pain, discomfort and disturbance. They have only experienced needles and sensors and incubators. They have not felt anyone's loving and caring touch. They develop a fierce kind of independence and self-reliance. So when they get home, it is difficult for parents to make them feel secure as they don't even trust their own parents. This comes across in small ways such as getting startled when touched (even if it's to just change the diaper) as they feel it could be someone trying to poke a needle, sleeping with both hands in mid-air in front of her face in a 'don't touch me' gesture, trying to snatch the milk bottle away (they feel that it would be taken away before they finish) or simply and most heart-breakingly, looking at the parents with distrust in their eyes. We are still working to overcome all of this and make her feel truly at home.
***
Some of you have asked me why I never mentioned all of this on the blog when it was happening. Well, here's the reason. The bar is a happy place. It has always been and it will always be. I wanted our story to reach at least a small positive point before sharing it. And even though we don't know what is in store for us and baby Xena in the future, for now we are in a happy place. Xena is alive, stable and home.
In the beginning, whenever I thought of everything that was happening to us, and saw my 990-gm baby, small and frail and helpless in the NICU, with so many tubes and needles, a lot of thoughts haunted me initially - Why us? Why our baby? Viv and I are good people, what did we do to have this happen to us? And that's when I realised it -- there is a lot of suffering in the world and we humans have to share it all. What have we done to deserve a perfect life? Why should we expect a perfect life when our fellow human beings have to go through so much pain and suffering? In the end it all comes full circle. We could either sit and cry every day or we could be strong and brave and positive. We took the second option because that is what would help our baby. The little one was fighting so hard at her end, she had so many well wishes coming her way, how could we let her down by being negative?
And why did I write all of this in such excruciating detail now? Because if some day, Xena, Viv or I forget to appreciate the value of life or the power of good wishes, we can come back and read this to remind ourselves.
At the end of it, I told myself what I have said again and again -- Everyone has problems. You just gotta make a bigger deal of the happy stuff.
In about half an hour, the surgeon moved the screen separating my face from hers and said, "Congratulations! The baby is out." The baby is out??? What did that mean -- the baby is out?? "Of course she is out, but is she alive??" I wanted to scream. Well, she had said 'Congratulations' and they all looked pretty relieved so I figured the baby was indeed alive. They stitched me up and I was wheeled to the recovery area for a blood transfusion. Later, I was taken to the recovery ward, where finally I saw Viv. He told me that the baby had been immediately taken to the neonatal ICU (NICU) for assessment. Her Apgar score was quite good, 8 followed by a 9.
I could see she was already papa's girl. Viv's lucky number is 9 and his birthday is 9/9. The surgery was scheduled at 9, the baby's weight was 990 gm, her final Apgar score was 9 and she was born at 10:01 am. Where's 9 in that, you ask? Well, 1001 is binary for 9, isn't it? (When I pointed this out to Viv, he was so thrilled! Nerds of a feather flock together...)
My blood pressure continued to be very high even after the delivery and so I was still on full bed rest. Viv went down to see the baby and took pictures with his phone. She was covered with tubes and sensors all over. Trust me, that is not the first view of your baby you want. She had been classified as a VLBW, which has nothing to do with the LBW we all know and love. VLBW stands for Very Low Birth Weight, and such infants are at a high risk of... well, everything. The lower the weight of the baby, the higher the chances of complications are, including some long-term ones. The IUGR had made her smaller than regular babies born at the same 32 weeks.
Just when I thought Viv and I could just stop worrying about me and focus on the baby, we realised it wasn't so. My blood pressure stayed high and just wouldn't come down. They gave me a medicine called Adalat which quickly brings down the BP but also gives you the mother of all headaches. When I was asked to describe the pain on a scale of 1 to 10 (10 being absolutely unbearable), I gave it an 8.5. It really was. But what to do, Adalat ka yehi faisla tha. Heh heh! I read that the effects of preeclampsia could last for weeks or months after delivery so I really had no idea when I would have the sensors and BP cuff and the catheter (Ugh the catheter! Don't even get me started on that.) off me. Worse, they would not let me go see my baby. First, I wasn't allowed off the bed, and second, they were probably worried my BP would shoot up even more if I saw the baby in that condition.
Finally, after staying in the recovery ward for days (again, a place where most people stay only for a few hours), they said I could sit in a wheelchair (my stitches made it impossible for me to walk) and go see my baby who was in the NICU.
Let me give you a peek inside the NICU. Well, when you first enter, it's scary. Alarms are ringing everywhere, there are funny lights all over and you are greeted by the sight of many struggling babies 'trapped' inside glass incubators, with wires and tubes all over them. It looks like some kind of an heartless experiment at first, and you want to kill the evil guys, but then you realize that the 'evil guys' who are putting their hands into the incubators and 'torturing' the babies are actually the angels who are trying to save these innocent lives.
Viv wheeled me into the NICU and took me to her incubator. Even though I had seen her photos on his phone, nothing had prepared me to see a baby of that size, in an incubator, struggling to get the tubes off herself. It was really heart-breaking. I could hardly see the baby. Instead, I saw a tiny, fragile 'thing' with an eye mask covering the upper half of the 'face' and a large breathing tube with two prongs going into the nostrils, covering the rest of the face. Other tubes led from her hands and legs to machines. Where was my baby? She was in an incubator under blue lights (for jaundice), hooked to a lot of machines with alarms that seem to go on forever. I did not break down though as I had anticipated. However, looking at her in this condition, on all the different kinds of life support, I went numb.
Yep, that is Viv's hand and that is Xena next to it. That's how tiny she was.
As premature babies' bodies are not equipped to handle nutrition that is not through the umbilical cord, they had put her on the IV drip and were going to test her tummy for tolerance towards milk. Mother's milk is truly nectar for premature babies as it has antibodies which are critical to the infection-prone babies. The doctors had asked me to express milk and send it to the NICU for the feed testing. Now here's the thing. When your baby is suddenly delivered at 32 weeks, your body simply isn't prepared to immediately start producing milk. Here I was, placing an order for milk, when it seemed like my body had gone on strike and the workers were complaining that production could not start that early as the factory had not been set up. "Well, what can I do? The CEO is already here! Surprise visit and all that. You just gotta do it." Luckily, they were going to test her tummy using 1-ml feeds first so within a few days I was able to send that much (in a syringe no less)!
Meanwhile, they finally discharged me with a lot of strong BP medication. They also asked me to buy a monitor and record my BP at home three times a day. The doctors said that preeclampsia-induced high BP is something that can take its time to go and there's not much I could do about it other than taking medication.
After that, our lives revolved around hospital visits. I was up and about in two weeks, and even though the stitches still hurt, I often forgot that I had had surgery. The focus was just to make sure Xena was stable and putting on weight. I could not believe it -- I had put on 13 kgs over the course of the pregnancy, and my baby did not even take up 1 kg of it.
All babies lose weight initially and Xena did too - about 45 gm. I remember being so elated when she put back 7 gm of that. Who imagined we would be celebrating our baby's weight gain in grams? But Viv and I did.
Initially, her body rejected the 1-ml feed, but the next round was better. They started slowly increasing the feeds to 2 ml, 3 ml and so on. While regular newborns were drinking 50-60 ml, my baby was on 2 ml.
Her jaundice was very persistent. While it is common for newborns to get it, it usually goes away with a few days of phototherapy, while for Xena, it was on for weeks.
Daughter of the notorious Bhai, Xena had started her gunda-gardi in the NICU pretty early. She bullied the doctors and nurses and almost always had her way. They were sick of resetting the tubes and sensors because she would just pull everything out. At first she was on breathing tubes with 22% oxygen, but she kept pulling them off. They even folded a thick piece of cloth and placed it over her neck so her hand couldn't reach her breathing tubes. In spite of that, she managed to pull them off. It was her way of saying that she didn't need the tubes and could breathe on her own. Finally, the doctors shook their heads, rolled their eyes, and took off the tubes as a challenge to her. Lo and behold, she really could breathe on her own!
Most premature babies are passive and weak, and pretty much lie there in the incubator. Not Xena! The social worker allocated to our case (the hospital allocates a social worker to the parents of all premature babies) said that in her 12 years of working in the NICU, she had not seen a more active baby than Xena. All the nurses we met said, "Oh your baby is so active. She kicks and pulls away all the tubes!" One of them even joked that they were considering changing the 1-nurse-to-2-babies ratio and allocate a dedicated nurse just to prevent Xena from pulling out the tubes! She was so tiny that the nurses could just pick her up with one hand! (New meaning to "She's a handful." huh?) and yet so powerful that it was next to impossible to wrench away a tube from her tiny fists. "Fight the battles, baby, not the tubes!" I would tell her.
Her initial heart scan showed a condition called Patent Ductus Arteriosis (PDA). Basically an artery called the ductus arteriosus lets the blood bypass the lungs because the fetus gets its oxygen through the placenta. The ductus normally closes soon after birth so that blood can travel to the lungs and pick up oxygen. When the ductus does not close properly, it can lead to heart failure. In most babies, the ductus closes on its own, though in some cases it reopens. For Xena, it closed, but before we could celebrate, it reopened. Thankfully, it closed again and no surgery was needed.
Meanwhile, we registered her birth at the ICA and were asked to get her passport made within 42 days! There is no way we could get a photograph of her face or her thumbprint for the passport. So we had to get a special social visit pass made for her so she wasn't considered an illegal resident. Sheesh. Didn't think paperwork would be another thing to think about in the middle of all that.
She did well in the NICU, breathing on her own and putting on weight and tolerating higher feed amounts. In two weeks, she was stable enough to be transferred to the step-down NICU. This was also part of the NICU but it was for babies who did not need very intensive care. However, the very next night, we received a call from the hospital to say that she had had a very bad desat. I didn't even know what a desat was -- apparently it's when the oxygen saturation in the blood drops because the baby forgets to breathe. Apparently, Xena had stopped breathing and had started to turn blue. They managed to resuscitate her by putting in a ventilator, which is basically a tube that goes all the way to her lungs. She was transferred back to the NICU, all feeds were stopped and she was put back fully on IV again. We rushed to see her and she just looked so frail and helpless and there was blood around the lung tube.
The doctors suspected necrotising enterocolitis (NEC) as the reason why she had the desat, which really surprised us because NEC is a very serious condition related to the baby's diet, and breast milk is known to help prevent NEC. She had been fine on breast milk all this while. However, we found out that the nurse in the step-down ICU had given her formula milk for a day because she thought there was no more breast milk! You can imagine how furious we were because here we were, ferrying 7-8 small bottles of breast milk to the NICU every day -- there is no way the milk could have gotten over. When we asked her to check again, she found 12 full bottles! Breast milk plays a critical role in preventing NEC, and no wonder that within 24 hours of having the formula, she was back in the ICU. We read this scary article about NEC and were very traumatised to know that one in four babies dies of NEC.
So she was off feeds and on IV and antibiotics for a week, with 8-hourly scans. They also took took a lot of blood for tests and cultures and another transfusion was needed. Once she was stable again (and had kicked off the breathing tubes) she was transferred back to the step-down ICU. However, based on our last experience, we decided not to go over the top with joy. And sure enough, they told us that one of the visiting moms had contracted chicken pox so they were checking with the moms of all babies if they have had it before. I had never had it which means Xena did not have the immunity against it. They gave her a jab with antibodies, and luckily there was no adverse reaction.
By the time, she was 1 month old, she was stable again and weighing 1400 gms. They only discharge premature babies after they reach the 2-kg mark. She put on weight a few times but lost again to go back to 1400 gms. The weight loss was partly due to the energy she spent in crying. It was really heart-breaking to see her cry of hunger (her milk feeds were heavily calculated and controlled), pain and discomfort, but we could do nothing. They let us put our hands through holes in the sides of the incubator to touch her though.
Her next round of gunda-gardi involved the feeding tube through which they gave her milk. One day, she cried so hard, she got really agitated and pulled out her feeding tube all the way from her stomach! I nearly fell down with shock when I saw her waving the end of the tube at me in a "Look ma, no tube!" gesture. They put in a new feeding tube, this time through her nose. They tried to get her started on bottle-feeding but premature babies are not able to coordinate breathing, sucking and swallowing at the same time. Also, the doctors said that the effort she would have to make to take in milk any other way than the tube would be so much that she would lose weight, and their priority was to have her gain weight.
One of the doctors had told us that when it comes to premature babies, they take one step backward for every two steps forward. Sure enough, each time she made some progress, we got some bad news too. Premature babies tend to get hernias as their inner abdominal wall is very soft. Xena's abdomen scans showed two hernias. One was an umbilical hernia which docs said should go away by itself but the other was an inguinal hernia for which she would need surgery. Surgery on a baby of that size?! Doctors said that she was too small for surgery at that time so they would wait till she was about 2 kg. I was totally freaking out at the thought of her being under anaesthesia.
We found it difficult to follow the NICU visiting hours, as it was painful to leave if she was crying. We just had to trust that the nurses would pacify her. She was turning out to be quite independent though -- the other day, she was crying and the pacifier kept falling off. I had to leave and the nurses were busy tending to the other babies so I put the pacifier in her mouth and told her 'Mummy has to leave now. Will you hold your pacifier, baby?' and she did!! On one hand, I was happy that she could 'take care of some things herself' but it was also heart-breaking that a newborn didn't have her parents around all the time to tend to her needs.
When she reached the 1.5-kg milestone, she was moved out of the incubator into a cot. This meant that she was more 'accessible' to us and we didn't have to put our hands into the holes in the incubator just to touch her. She was still on the feeding tube though, as bottle-feeding was causing desat.
We had started kangaroo care, which is a technique where you hold the baby skin-to-skin. This helps to create warmth, security and bonding in babies who have to stay in the NICU for very long. So I would go down to the hospital for kangaroo care every day. About kangaroo care itself, well, if you can put your baby on your chest and button up all the way, that is one tiny baby. Viv also tried it once but I told him vainly his kangaroo care doesn't come with a value-added service like mine did. You see, I sang to the baby during kangaroo care. Muahahaha! Singing was easy. The tough part was choosing which song to sing. Of course, the big song those days was 'Sheela ki jawani', but that was perhaps a tad inappropriate for a baby. So I sang the title song of Main Hoon Na because I truly did feel like that about her:
Kiska hai yeh tumko intzaar, main hoon na
Deh lo idhar bhi ek baar, main hoon na
Khamosh kyun ho, jo bhi kehna hai kaho
Dil chahe jitna pyaar utna maang lo
Tumko milega utna pyaar, main hoon na
Of course, sometimes she took my words too seriously, especially when I sang "Khamosh kyun ho..." and she would wail to a degree that exhibited the exact opposite of khamosh. (Erm, she also cried if I went off-key. Sheesh.)
I would sing a different song each day and over the days, I found out which songs she liked. Main hoon na, Tinka tinka and Sau gram zindagi were her favourites. When I'd first heard the Sau gram zindagi, I loved the melody but I wondered what exactly what the words meant. Sau gram zindagi? 100 grams of life? What did that mean? Ironical that the song came to have its own meaning in my life, where we were literally counting the grams of life on Xena. Sometimes the wait for her to get home seemed so endless. I celebrated my first birthday as a mother without my daughter. I celebrated my first Mother's Day without my daughter.
We got so used to seeing her that she didn't seem small to us anymore. In fact, I pointed to one of the other babies and told Viv, "Look look, GIANT BABY!!!" He said, "Erm, that is not a giant baby. That is a regular-sized baby. Our baby is small."
On 30th April, she was finally moved out of the setp-down NICU into what they call a 'special care nursery' (SCN) where they trained her to bottlefeed without having a desat. The SCN was a crazy noisy place, with alarms beeping all the time, the only thing louder than those were the babies wailing ("I'm a celebrity, get me out of here!"). Xena quickly made herself at home, and I could totally imagine the gunda-gardi at night with the babies bullying the newcomer babies and demanding 'hafta' of the order of 'char peti milk'.
Xena did well in the SCN, but as usual, there was the not-so-good news. Her brain scan showed a small bleed. Premature babies are at risk of such haemorrhage, and doctors said that as long as it does not progress, it should resolve itself. Her heart scan confirmed the small hole that one of the doctors had initially suspected. She also had anaemia. The doctors will do follow-up for 8 years (!!) as premature babies are susceptible to a host of problems involving developmental milestones such as speech, walking and learning.
As for what caused all of this, the doctors are not sure. It had definitely something to do with the placenta, as the surgeon who did the c-section said that she found a large blood clot behind the placenta, which itself was half-detached. "We were surprised the baby hung on for so long in spite of that!" She said. Apparently, even a day's delay in the surgery could have spelt danger. I am just thankful that even though all this happened, Xena and I were in good hands. The doctors and nurses did such an incredible job taking care of us (and pretty much saving our lives) that I was ashamed that I had had doubts at some points about transferring to a 'government hospital'. I wish I could donate a large sum of money to the hospital, but their bill already made sure of that. ;)
Viv and I attended classes on taking care of premature babies at home. They even had a session on infant CPR, which we attended, hoping the entire time that we would never have to use it. We were very nervous about taking her out of the controlled hospital environment with all the sensors and monitors that alarmed as soon as something went wrong. Even when we held her in the hospital, we would be constantly watching the heart rate, oxygen level and breathing rate. We heard a horror story of someone whose baby went home to come back to oxygen support the very next day because she caught an infection at home.
Xena's hernia surgery was on 19 May. I still remember watching my tiny baby being taken into the operating theatre. When she came out, she was hungry and in pain, and was crying a lot. She was still on IV and they could not give her any milk, so they gave her a pacifier and she kept it on for four hours straight, hoping that maybe suddenly milk will come out of it. It was really heart-breaking to see that. Two days later, she was discharged. She was stable, could bottlefeed, and had recovered well from the surgery. Her homecoming on 21 May, more than 2 months from the time she was born, was a strange experience. We were excited and nervous at the same time. On her first night at home, Viv and I pretty much stayed up all night watching her, with the sole aim of keeping her alive (I kid you not.). We tried to recreate the hospital environment as much as possible so it would be easy for her to do the transition. We wash our hands every time before touching her. She is in an air-conditioned room all the time. Even at night, there is always a light switched on. She is not allowed visitors. Viv and I have not even kissed her face yet. When we feel like kissing her, we kiss the top of her cap.
Though she was born two months ago, medically she is considered a newborn as they count the age for all developmental milestones from 40 weeks of gestation. Xena is still tiny; we did not even buy any bottoms for her as the newborn tops reach her ankles! She has been home for over a week now, and we are still learning how to take care of her. The biggest challenge remains winning her trust. Premature babies who spend months in the ICU do not trust anyone. They associate human touch with pain, discomfort and disturbance. They have only experienced needles and sensors and incubators. They have not felt anyone's loving and caring touch. They develop a fierce kind of independence and self-reliance. So when they get home, it is difficult for parents to make them feel secure as they don't even trust their own parents. This comes across in small ways such as getting startled when touched (even if it's to just change the diaper) as they feel it could be someone trying to poke a needle, sleeping with both hands in mid-air in front of her face in a 'don't touch me' gesture, trying to snatch the milk bottle away (they feel that it would be taken away before they finish) or simply and most heart-breakingly, looking at the parents with distrust in their eyes. We are still working to overcome all of this and make her feel truly at home.
***
Some of you have asked me why I never mentioned all of this on the blog when it was happening. Well, here's the reason. The bar is a happy place. It has always been and it will always be. I wanted our story to reach at least a small positive point before sharing it. And even though we don't know what is in store for us and baby Xena in the future, for now we are in a happy place. Xena is alive, stable and home.
In the beginning, whenever I thought of everything that was happening to us, and saw my 990-gm baby, small and frail and helpless in the NICU, with so many tubes and needles, a lot of thoughts haunted me initially - Why us? Why our baby? Viv and I are good people, what did we do to have this happen to us? And that's when I realised it -- there is a lot of suffering in the world and we humans have to share it all. What have we done to deserve a perfect life? Why should we expect a perfect life when our fellow human beings have to go through so much pain and suffering? In the end it all comes full circle. We could either sit and cry every day or we could be strong and brave and positive. We took the second option because that is what would help our baby. The little one was fighting so hard at her end, she had so many well wishes coming her way, how could we let her down by being negative?
And why did I write all of this in such excruciating detail now? Because if some day, Xena, Viv or I forget to appreciate the value of life or the power of good wishes, we can come back and read this to remind ourselves.
At the end of it, I told myself what I have said again and again -- Everyone has problems. You just gotta make a bigger deal of the happy stuff.
