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.
103 comments:
you guys are amazing.. Just loads of good wishes to all three of you, I am just speechless and can't say anything more. Take care of yourself too, and I am SO glad you are in a happy place now.
Wishing you, Viv and Xena health and happiness forever..you guys are brave and beautiful..
You made me cry, Sayesha. I have seen my sis go through something like this - though, much less scary, and I know the effort it must have taken. I love Baby Xena already for being the ultimate chhotu bhai :)
That is truley brave of you. Thank you for sharing the experience. May princess Xena have a long life.
I was born underweight with neonatal jaundice. I think I've turned out fine :)! It will just be a matter of a few more posts before Xena gives you competition with a mini-bar of her own :)
What a story. Thanks for sharing. You are very brave. Good luck to you and Viv and Xena. Dont worry about the trust - babies heal easy in all ways. She will know you love her soon enough.
I would consider myself lucky if I can gather even 10% of the strength that you guys have. Best wishes forever.
I'm all choked up, re. "Main hoon na" is what did it... I used to sing it to Angad when he was very tiny and sick with his first fever, and he'd become very quiet, inactive etc. unlike his usual self.
I'm so very glad for the happy ending (..er... beginning), and best wishes to you and Viv and awesome little Xena.
Sayesha,
I have always loved you-Now I love you even more.:)
"You just gotta make a bigger deal of the happy stuff."-I dont even have anything to say on how that simple sentence affected me.You guys rock.
And its nowhere close to what you had to go through. But I was born two months premature weighing 1000 gms..And see, I turned out to be ok. I can even reply to blogs..;). Xena is gonna be a kickass daughter who is gonna make her parents incredibly proud!! Congrats!!
Lots and lots of love and wishes to you, Viv and our Darling Xena!
All izzzzzz well sayesha! Remember this and i know you have the brave heart to have gone through all this. Xena is a fighter too. She'll bring all laurels and wishing the best to come .. Again welcome home Xena..
Ah, Bhai, was wondering what Xena's songs might be, and unasked, you wrote!
I think if you go back to Kishore Kumar/Lata Mangeshkar days or even further back, those songs might be more calming :)
Ah but bhai, you haven't seen any troubles yet. Wait till You get a call from Xena's school for punching a bunch of rowdy boys.
:)
Premature babies who spend months in the ICU do not trust anyone.
This one really tugs at the heartstrings.
Dear Sayesha, if good wishes from blog-readers far away have any effect, then all will have to be well; Bhagwaan ko is mein koi choice nahin rehaga.
Looking forward to more Xena pics :)
Keep up the positiveness! Hugs!
You brought tears to my eyes, Sayesha. Your blog has always been happy place for all your readers, and I admire your spirit. Wishing you and Viv and Xena all the best in life ahead.
Love you Sayesha! Love you Xena!
Hmm.. so what's with your job now? I would love love love to know how your company helped you out here. And what about the baby boy story for sis? Let the bar be back! ;)
I cried while reading your posts. You guys are very brave. Made me realize how we take everything for granted.
Best wishes and prayers for the adorable Baby Xena.
HI,
I am a silent lurker on your blog. I wish your baby has a healthy, happy life ahead.
I was a premature baby too, underweight, kept in an incubator for more than a month, fed through tubes (and that's early 1980s in India). Apparently the docs said I was a tough cookies and I fought off and was really active :)
P.S: I turned out just fine!
I think there is one more reason of writing this in so much detail
it gives hope and support to other people who are or may go through such experiences in futures
thanks to google, they will land on ur bar
future (sp)
Hi, I have never commented on your blog before. I was truly touched by what you have shared with us and I agree so much with your last lines about life in general.
I pray that your daughter will lead a good healthy life. Good people deserve good things.
Thanks for reminding that one cannot take everything for granted.
Congratulations Sayesha! I rarely do..but I'm crying as I read this. You are one brave girl and so is Xena. Hugs!
All the very best for you and your baby! As we say in USC: Fight On!!!
Sayesha!!! I am speechless...don't to what to tell...tears in my eyes...wish you guys and dear Xena all the best...
Hats off to you guys !!! Xena is going to be one tough cookie !!! Like another commentor said, your story is going to give hope to so many.....and withso many well wishers from around the world.....you guys are going to be fine :)
Hello Bhai,
I just rushed reading thru this part, hoping to find that xena is at home and doing great!!
in a lot of ways she is.."the so-gram miracle!!" :) yes, there may be a few hurdles, lets take it as minor steps considering all that she s sbeen thru till now is like leaping of mount everest and surviving!
You guys are in my prayers, every single day.. I promise.and my prayers have never every failed when it is for anyone other than myself!!.
and you are right, we have to take our share of misery and sorrow in the world.. and you just may have got it in one lumpsum package, once it for all..
when the going gets tough, the tougher gets going!!
go Bhai,go Mr. bhai and Go little bhai-ette!!
Long time reader and I had to finally comment because you made this lurker cry...
My heart broke after reading each post and then again with happiness to hear your Xena is getting there.
Sending lots of love and wishes to your fighter and yourselves - I can understand why you wouldn't have wanted to bare it all here but I am glad you were able to get it down even for posterity's sake.
Take care of yourselves and Xena *hugs*
:)
Cannot WAIT to see the princess :)
What an inspiration!!
WOW.. Kudos to you for writing this down and also bravely going through all this..
Good wishes to the warrior princess :)
Bhai... this is the baap of all the childbirth stories I have come across...
Sending across love and courage and a lot more blessings for the family.
Finished all the three parts now and could not hold back the tears.. of pain, anger (as to why??) and then happiness that all is well...
So chotu bhai... jhakkaas entry maara aapne, abhi jhakkaas ban jaana :).. love you baby!!!
Ur a very positive person. Loved the last bit... wish more pple would read ur post and learn a thing or two abt positive thinking.
Lots of hugs and love to baby Xena
Take a Bow! All 3 of you!
Loads of XTRAAA love and best wishes to Xena!! She has the spirit!!
you wrote this so well... i serisouly think you should send this to some publication.. i am sure, it would help a lot of people... there's so much to learn from your positive attitude, and the way you took on your challenges, face to face...
i personally, went through a small phase, my son had hydrocele, which needed operation, well, one of his balls, was just swelling away... for months before his surgery, i would cry silently at night, crying for the pain my child would have to go through in the name of surgery... it was so tough.. and on the day of surgery, there were two painful injections, and the nurse came and took away my baby, i cried so much.. and then from somewhere, i found strength.. and knew my baby will be fine.. and he is, thank god and the surgeon for that...its been a year since surgery and he is doing fine so far...
i can already see that your little daughter is a fighter, and am so sure, your optimism will rub off on her.. my prayers for her good health
:)
Me thinks you folks have already crossed the worst of it all. It is going to only be up, up and up from now on (my ESP's telling me you know :-)).
Good luck, all three warriors! You are amazing folks and deserve the best!
Hi Ayesha,
I've been enjoying your blog posts for the last few years. These 3 posts just made me cry. As a mother myself I can only imagine the kind of pain you guys went through. One would do anything and everything humanly possible to keep your child safe. To keep your chin up through all that and more-kudos to you and Viv, the brave parents and to little fighter Baby Xena.
I may no know you guys in person but from the bottom of my heart I wish that lots of happiness and goodness comes the way of your little family. You guys deserve it.
Jyoti
i am in so much awe of you. and i feel so small for the low period i went through when anna was born, just because i couldn't sleep. thank you for writing this. it's a reminder to be so very thankful for what we have.
All these years, having read every post of yours, I have smiled and laughed. Par in teen posts ne itna rula diya...
You, Viv and Xena are wonderful people.. Lots of love and best wishes to you and your family!!
Awww *sniff*
(((Hugs)))
And here I was, forever feeling upset that I had my twins prematurely, who barely weighed 1.5 kgs at birth!! I rued over the fact that I could never breastfeed them .
Compared to what you and Viv went through, I think my time was a breeze. I cannot even imagine the amount of anguish and trauma you must have gone through.
But to come out with such a positive attitude after all the pain, truly deserves a bow. You are a brave woman Sayesha and you have a great partner. May Allah give you and your family all the happiness you deserve.
PS: Apart from initial health issues, I've read that premature babies usually turn out tougher than their normal-born counterparts.So you just have to wait for the little darling to stabilize. I'm sure she'll be up and about and running you ragged pretty soon.
Ameen :)
Sayesha and Viv: Total respect.
What a post ! I was so inspired after reading this. It is very amazing to know how you ppl have taken it with a positive spirit.
I was so touched by "Viv and I have not even kissed her face yet"....I have no words to express...
Xena is a true fighter... I pray and wish her a whole world of happiness ahead!!
Hi Sayesha,
i have been a silent lurker but this post woke me up to send you my wishes. Will keep you in my prayers. Good Luck. Everything will turn out fine.
Spoorthy
Best of wishes and loads of love, prayers from heart within....All this and more for you all - always. You all are real fighters...
Only you know the real meaning of life - the life in grams.
Wishing and praying a long happy and healthy life for Xena and ofcourse you both
No amount of words written here would heal the pain, but a cousin sister of mine had a hole in her heart. I do not know the exact medical history and the process she went through, but she is doing absolutely fine now and is a merit holder in the recent board examinations. So hoping and praying that Xena should have no problems growing up.
And that is the statement for which I have liked Sayesha and her blog from the beginning.
Xena is a winner....And I don't tink anybody who knows her parents is gonna be surprised.
One of the reasons I have been a regular reader of your blog is because there is so much positivity in you. And to stay the same in such a tough situation requires unimaginable courage. Hats off to all 3 of you
Lots of Silent Lurkers posting :). I nearly fit into that category only that I have posted once before.
Moving Post. My niece had a similar condition. Only difference is that she was born a normal baby. She kept losing weight and getting fever and such, and my bhabhi noticed her being uncomfortable with breast feeding. The pediatrician felt a murmur in her heart and on further diagnosis found out that the hole in her heart wan't closed. might be what u classified as PDA. It was really a struggle for her parents.
She was all bones. The cardio surgeon wanted to operate right away but the neonatologist refused as it would be difficult for them to care for such a baby. THey wanted her to gain some weight first. The cardio insisted she would once the surgery was over but they still wouldn't budge. We heard that the two departments got into a stand off in which the neo ppl refused to care for the baby if the cardio guys went ahead with the surgery. And the cardio guy said they would take care of her themself. She had the surgery soon after and started gaining weight. :) Now she is a real chubby Boss at her home :)
Sayesha,
THis post really got ters inot my eyes.. Esp the part where u mentioned abt baby not liking to be touched.. It is really heart wretching... BUt im soo soo happy for you.. God has given u a real fighting princess.. Prayes and best wishes to all 3 of you..
And coming to the last part abt wrirint it all on your blog.. i had that exact thought too..though couldnt do so in much details . DO check out - http://demodivz.blogspot.com/2009/04/jan-13-2009.html
whenever u have some time
As you rightly said, you took the brave and positive attitude and so did the princess. U fought for her and so did she for U, it is in the genes.
Love all 3 of you for the courage you have shown :-)
i cried. again. and the 100gm zindagi line gave me goosebumps. in the middle of my workplace
you wudn't know, but the last line about the happy stuff is the only memorable quote i have put up on my fb profile. somehow, i owe some of the happiness i have to you. the blessings of a thousand plus satisfied bewdas will be always with you and Viv and Xena.
lots of love!! :)
I was a lurker on your blog, but the heart-rending tale of Xena's birth and her(and your) fight makes me want to comment. Here's to a wonderful life ahead, and Xena, the spunky child that she is, I am sure will be perfectly fine! Wishing you all the best! The three of you deserve the best, after what you have gone through.
Brave decision:), I feel happy that it resulted in happiness.
I was almost in tears... Nobody can even feel what you have been thru... May God give you Viv and the baby strength to pass this phase... And u will make a great team...
Yet another lurker - been lurking at the bar in the shadows for the last 4 years.
Missed all 3 parts of the post and read them together just today. Was so pleased to read that you and Viv brought home another bartender. And even more pleased (and inspired, of course) that you managed to eke out every little positive from all the difficulties you faced over the last few months. Fortunately, all this pays off and I am already looking forward to a big bunch of funny baby Xena posts for a long, long time to come.
Congrats to you and Viv and hello to the warrior princess
Hi Sayesha,
I have been reading your posts since the last few days. Couldn't read the last one in one go. And everytime I have been crying at the end.
My sincerest wishes are with you, Viv and Xena and your entire family.
You guys are an inspiration, a true inspiration for us all.
Thanks for sharing your story.
-Cheeseandpepper
Sayesha,
I have been a silent reader of your blog for a while now.I could relate to your lives away from India and especially to the part being married to someone who speaks a different language.I'm from South and my hubby is from Nepal and we live in USA.We have a 2.5yrs old daughter and now I'm expecting our second one, due, end of August. Reading about your experience brought tears to my eyes which is a very rare thing.I'm known to be the cold hearted one in the family who didnt even cry when my dad passed away.I'm so proud of you ,Xena and Viv..you guys did a great job.My prayers and kissies for lil Xena.God bless the lil one to fight her way through life to live a healthy,happy and long life.
-Avani
Don't know what to say....I am speechless! Kudos to your and Viv's courage. Amazing people you are. Xena is so so lucky to have you guys as her parents.
She's going to be one amazing girl! :) :)
Hi Sayesha,
I have been a silent admirer of your blog since so many years now.. diligently waiting for new posts/updates.. dunno why never thought of commenting before.. this post somehow made me write to you.. i m sure i would not b able to even imagine what u, viv or ur little one must have felt this whole time.. but I totally admire the courage that u guys have.. I am expecting my first baby this oct.. i had viral flu last week and had to take antibiotics.. i was so freaked out abt taking them least it hurt my baby in any way.. it seems so trivial now.. but guess it gives me a little tiny winy perspective on what u must have felt.. God bless u, Viv and darling little Xena..... Take care
Bhai - I don't have words to express what I feel right now after reading all three parts in a row. I have a niece who is also named Xena after the battles she had fought during her birth, and I am proud of the both her and your Xena for showing the world what odds the human spirit can survive. I wish I had better words to express this, but I will cherish your family's victory as long as I live.
Everyone has problems. You just gotta make a bigger deal of the good stuff.. lady, u just gave me a mantra for life. 3 cheers for the little one..and for the mater..
I have been a reader for a while now but never commented. Came here after a long gap today and read Xena's story. I must say, you and Viv seemed to have taken it on the chin - and what's more, with grace and courage, which isn't easy. So well done you both!
Xena seems like the pukka daughter for a Bhai - what a fighter she is. Well done her and I am looking forward to reading about her antics from now on.
Congrats you three and wishing you all bucketloads of joy.
This has been inspiring.
Thank you and all my very best wishes.
Thank you Sayesha for that post.. if there is anything called life changing story, this just might be the one for me...
Kudos to your courage, positivity, and to the little warrior princess.. A couple of years more and you would have a tougher job shooing away young boys swarming around her :)
I think this might well be the first blog post in the history of five years of blogging that has brought tears to my eyes.
The inner Xena gene in you and Viv seems to have passed on to Baby Xena. :)
All the absolute best for everything, keep on making a bigger deal of the happy stuff, always. :)
Love,
Sunrise
Been reading your blog for a while but never commented.
This post is very inspiring. May God bless the three of you.
Xena is a real warrior...hats off to her
Sayesha,
Words fail me. Would just like to wish all three of u all the very best!
Sayesha, the post moved me to tears. Looking back, I feel that my complaints about morning sickness, low apetite, feeling uneasy were nothing when compared to what you went through. I salute you my friend, for being so positive and courageous as you went through the most trying times.
The last two paragraphs are so touching and inspiring at the same time. God bless Baby Xena and best wishes to Viv and you. The worst is over, Sayesha. It is going to be only happy days ahead. Take care.
Sayesha,
I've been lurking on your blog since 2005 (!) giving the occasional comment.
Your story about Xena has been simply inspiring! Premature babies really are the most special babies in all the world. :-)
Growing up I had 2 brothers who were "premmies" the first brother was born at 25 weeks, and the youngest at 27 weeks. Both brothers have had their share of health problems but are doing fantastically well. Even as a child I remember visiting the special care nurseries, seeing all the babies hooked up to monitors etc.
Viv's observation about how large other babies look is so true! I can never see a normal size baby without thinking they look HUGE! Premmies are just so tiny and cute! :-)
Wishing you, Viv and Xena all the very best!
Mary
Hi Sayesha, Have been reading your blog for a long time and love it
God bless Xena and the family
Was thrilled to read you having baby and equally cried reading the parts
May this blog and your life be a happy place always!
God Bless!!
Sayesha
I've been reading your blog for years but this is my first comment here. I delivered a 32-week preemie too, last year. And my little daughter is 15 months and doing fairly well (developmentally she's at ~12-13 months, which is in line with her calculated age, really). I'm sorry about the stress and tension you've obviously gone through, but I do want to lend you a little hope that things will get better, since I appreciated such positive preemie stories from others.
I've written up her NICU story on my blog, if you want to read it. The biggest lesson for me was to give her time and freedom to do things at her own pace and not try to force my expectations on her. Holds true for every parent and especially stronger for parents of preemies.
And preemie babies are strong, but they also help make the parents stronger :).
I just realised how much we take life for granted..thank you for reminding us how precious life is..and how unique each child is.. You have gone through so much and have walked away with something positive..that is so hard to do.. *Respect* I am sure gundi will and has already brought so much joy in your lives (and our stoo) that overshadows all the pain.. she is a fighter and an inspiration..so are u two!.. You all will always remain in my prayers every single day. Looking forward to hearing about the lil fighters life as she grows :) *hug*
Sayesha,
You baby is going to be a very fine child and she will kick ass just like you. I wish you and your family wonderful memories as she grows and brings joy to your lives.
Sayesha..u moved me to tears...and i am soo soo glad that Xena is doing well.. she will grow up to be a healthy lovely child who will give u and viv much happiness always :)
Suba
Hi Sayesha,
Your posts brought tears to my eyes..reminded me of what I went through after my son was born and was in the NICU for 10 days... but it was nowhere close to what you had to go through. I am so happy to hear that Xena is home finally..I am sure you will make great parents...just hang in there....She has already proven that she is a fighter....things are only going to lookup from now....and ya Congragulations to u and Viv!!!!
Its so good to know that Xena is finally home, happy and kicking :)
Wishing her lot of health..keep us posted for all her gunda gardi :D :D
had heard abt ur blog from Prats, but read it for the first time...i had goose bumnps as i reda this...
Hugs and many more hugs to u and the little one...
U have described every bit of it so wonderfully, that i could picture things going on in frnt of my eyes....
My bestest wishes to the three of you, may the kid is free from all remaining complexities also soon, and is like all other normal babies in days to come.,..:)
PS: Btw is Xena her blog name or the real name, and if real, what does it mean??
Loads of good wishes ...
I said... Xena
Hi Sayesha,
Though I am a regular reader at your blog (I had my first comment from you when I started my own blog), I haven't commented that often. But this time I had to - after reading the series of your posts on little Xena! What else can I say? your last 2 paras sums it all up - my best wishes and heartfelt prayers to Xena, you and Viv!
"Everyone has problems. You just gotta make a bigger deal of the happy stuff."
Wow!! that's a super philosophy. All the best dear!! hope da strength doubles each day!!
Shalaka,
Thanks. :)
astha,
Thank you. :)
The Soul of Alec Smart,
Love the name chhotu bhai! :D
whatsup,
Thanks. :)
naween,
Mini-bar? LOL! Love the idea! :D
chengiz,
Hope so! Thanks. :)
the.orchestra.of.life,
Thank you. :)
Nandini,
Yeah that song really has something. :)
Urs...Jina,
Thanks for sharing your story. Gives me more hope. :)
Disha,
Thank you. :)
Ashwini,
Thanks. :)
Arun,
Yeah I can't wait till she starts understanding hindi songs... :)
TMaYaD,
Hahahaha! :D
Arun,
I know... :( And it's worse when you witness your own baby doing that..
Thanks for your wishes! Will post more pics soon. :)
crazy,
Thanks. :)
shinta,
Thanks. :)
Porkodi,
Thanks! I am currently on maternity leave. Let's see what happens after that. Too early to tell. As for baby boy story, no complications phew. Baby was born and that's it. :)
Yogita,
Thanks. :)
n.aka.zephyr,
Wow, that's impressive! Thanks for sharing your story. :)
Ailya,
I would be happy if my story gives hope to others going through the same thing. :)
Nalini,
Thank you. :)
anshuj,
Thanks! :)
adarsh,
Thanks! :)
Diya,
Thank you! :)
sheila,
Thanks and touchwood! :)
Swathy,
Thank you! :)
ps: LOL @ bhai-ette!! :D
siggysparkle,
Thank you. :)
shub,
Princess is waiting to see you too! Get your ass here asap! :D
Yamini,
Thanks. :)
Sree,
Thank you. :)
mumbaimom,
Thank you. :)
rt,
Thanks! :)
monu,
Thank you. :)
Archana,
Fingers crossed! :)
afishcalledgoonda,
Thank you so much. :)
annastales,
Thank you. :)
Achu,
Thanks! :)
momofrs,
Thank you so much. :)
Meenu,
Thank you. :)
Anita,
Thanks! :)
spoorthy,
Thank you. :)
Life Begins,
Thanks! :)
Sudeep,
Thank you. :)
nidhi,
Thanks. :)
Aislin,
Thanks for sharing your niece's story. :)
diyadear,
Thank you. :)
reena,
Thanks. :)
Geomon,
Thank you! :)
wordsndreamz,
Thank you. :)
aequo animo,
Thanks. :)
Art,
Thanks. :)
The Neverknown,
Thanks. :)
Ms. Alexa Smarty,
Thank you. :)
avanibala,
Thanks. :)
Sanket,
Thanks. :)
Ashma,
Thank you and best wishes for the little one! :)
Sudipta,
Thanks. :)
How do we know,
Thanks. :)
DesiGirl,
Thanks! :)
Snowbeak,
Thank you. :)
Ragini,
Thanks. :) The young swarming boys are in for some major dhishoom-dhishoom methinks! :D
Sunrise,
Thanks. :)
Anuradha,
Thank you. :)
KB,
Thanks! :)
G Kh,
Thank you. :)
Sandhya,
Thank you. :)
Mary,
Thank you. :)
Sheetal,
Thanks. :)
takshaka,
Thank you so much for your comment, it really does give me a lot of hope. :)
bluejay,
Thank you. :)
Persona non gratis,
Thank you. :)
Myriad,
Thanks. :)
Ranjini,
Thank you! :)
VM,
Thanks. :)
I,
Thanks. :)
ps: She is nicknamed after Xena the Warrior Princess. (see Arun's comment below for Wiki link.)
NIKHIL,
Thanks. :)
Arun,
Wow, you read all the comments?? :) Thanks for the link. :)
Ravi,
Thank you! :)
shweta,
Thanks. :)
Sayesha,
All 3 parts of your 'story', what is in fact your life, were absolutely heart-warming. I don't know how many times my eyes filled up while reading those.
Thank you for choosing to share such intimate details with us. You're sharing true hope with us and that's not something easy.
I really must stop pontificating. As you said, this is a happy place and I pray to God that it continues to be so!
Go Go Power Ranger Gundi Warrior Princess Xena!!!
lots of love and good wishes for a healthy and happy life for xena :)
hats off to you madam.. good luck and love to xena
Have been following your blog for a while. Really touched by your story and have tears in my eyes. I have just gone through a difficult child birth myself but nothing compared to you. You 3 are really brave and deserve the best. Best wishes always
Sayesha, reading your blog i went 3years back.. i have been through the same tough time when i prematurely delivered my girl because of preclamsia.
A tiny fighter with tubes all over :(
she contracted Sepsis, a life threatening blood infection.
With God's grace and lots of good wishes she has recovered fully and is now three.
I wish all the best and healthy long life to your little fighter. God bless her.
I am expecting again, fearing a lot. This time i am in singapore, can you share the approximate hospital charges, as i am deciding whether to deliver here or in india. Good luck to you and love to Xena !!!
Nair,
Thank you. :)
Neha,
Thanks! :)
Construction Clerk,
Thank you. :)
Avnikaa,
Thank you, and all the best! :)
Mansi,
All the best with your pregnancy. Hope all goes well. :) The cost will definitely be much much higher here compared to India. Do you want to send me an email if you have specific questions? My email address is on my profile page. :)
Hi Sayesha
First of all, Congrats on becoming a mom!:)
Baby Xena is really cute!
Even my daughter was born at 35 weeks as i had high BP(150/100) and low amniotic fluid level.She weighed 2kgs at birth..i too went through an emergency C-Section..i too was very scared and depressed when i saw healthy babies all aorund me and people pointed fingers at me as if i had something to do with it..now Oviya is 21 months old and she is hyperactive and very intelligent..although she is still a bit underweight, she charms everyone with her antics and her smile!
ALL THE BEST!!:)
Sayesha,
Had tears in my eyes going through what you experienced, yes it is so difficult to even start imagining what you guys must have been though.
Baby Xena is a true fighter and so are her wonderful parents.
God Bless!
--Seema
Have been reading you forever but have never commented. You guys are extremely brave and strong. Hugs to the two of you and sending loads of good wishes, positive vibes and good luck for you three.
Much love to baby Xena. May she be a little fighter always.
Hi Sayesha,
I got the link to your blog post from your good friend , Srividya, who's my friend from college. Being in the middle of such an episode, your blogpost has been like a breather for me. I delivered a baby boy on July 4th at 25 weeks, weighing 850 grams. Like in your case even we were asked to let go of the child when my waters broke. It ws vey hard for me to let go when I felt the lil one kicking inside me even after quite a lot of amniotic fluid had leaked out. After spending the entire night awake and uncomfortable on my left side, I went into labour the very next morning. That was indeed the longest night of my life! We were quite bewildered and even braced ourselves for the unfortunate outcome. But a stroke of luck hit us when a phone call to our family physician gave us hope. This was my first biological child and we had no idea about pre-term babies at all!
Our baby is now 2 months old and has just reached a gestation age of 36 weeks. He's still in the NICU. I travel 2 hours everyday to the hosp to be by his side for half hour or so (That's the max they'd allow me. I wish I could spend the entire day there!) He's had his ups and downs with sepsis, chronic lung disease and ROP( retinopathy of prematurity). Slowly stabilizing but still has a lot of growing up to do! :) Like you said, as parents, we have to be positive and strong for our tiny angels.
Wishing you,Viv and Xena the very best and lots of love n prayers for the lil one. I'll certainly keep you all in my prayers. Take care.
Warm regards,
Chaitra
Hey, Congratulations for your little bundle of joy. I could not stop myself from writing few words here because I also delivered recently and to read what you have gone through, is overwhelming. I had a normal delivery and yet little things make me so worried but after reading all this, I am going to appreciate things more and try to be less worried. May god bless little Xena :-)
Read ur 3 posts in 1 go.....have no words to say....cried tho.
Tek care. Sending across lots of love and my prayers with ur family.
It's 3am, I stumbled upon your blog while googling about our case. just gave birth to 1.2kg baby, 32 wks. Your blog gave us so much hope. After crying for 2-3 days already, today me and my hubby had genuine smile looking at how healthy and xena seems. Thank you for sharing. When my baby comes out from nicu and is big enough I'd want him to meet xena.
Piggy (stupigity.com)
It's been years since I commented on your blog. I spoke to you when I was in Singapore on an official trip remember? I didn't realise then I was pregnant. To cut a long story short, severe pre e, doctors induced labour, still born baby boy weighing 450 gms. A year later after all sorts of precautions, I developed similar problems and delivered a baby boy weighing 650 gms. He lived an hour. A year after that after taking even more precautions, I developed the same problems again ( gestational bp , the worst word in my dictionary). Emergency c - section, a boy again. He weighed 950 gms at birth. He was in the NICU for nearly 2 months and came home weighing a hefty 1.2 kilos. He celebrated his 3rd birthday yesterday. He is a super active chatterbox. He is also super super scrawny but we hope he will catch up sometime soon! You know I am coming to Singapore tomorrow to visit my brother. Maybe we could chat/meet. I am sure there is loads we could talk about!
Hi Sayesha - landed on the series of posts from the link you provided on your latest. Read it in one shot. As I was reading your posts - I kept asking myself am I reading your story or mine!. Most of the parts match. I delivered twin girls weighing 900 gms and 1 Kg at 30 weeks after being on a month long bedrest in the hospital with all the machines attached to monitor my 2 girls. Went thru the NICU scares as well. I still do not know why my case turned out to be such!
I am glad that our babies are fighters and have come out of whatever life threw at them.
Good luck and I think all this just made me a better and a stronger mother!
--AA_Mom
Your experience navigating the decision between general anesthesia and epidural for your surgery reflects the importance of informed choices in medical procedures. Opting for epidural provided you with pain relief while allowing for neonatologists to assess the baby accurately. Your interaction with the anesthetist during the surgery adds a human touch to the medical process. Such experiences shed light on the significance of Operation Theater OT Table in facilitating various surgical procedures with patient comfort and safety in mind.
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