Wednesday, October 13, 2010

Mom to Shreya Asha Draggon
July 1st, 2010 - July 30th, 2010
Orlando, Florida

My journey with my daughter Shreya begins like most other baby stories, with a pregnancy test, or in my case with five pregnancy tests.  I took the first on February first.  It showed a light blue line, very faint.  I tried not to get excited since it was way too early to be very accurate. So I waited and took one every day for the next three days, light blue.  Cautiously optimistic, I finally took a digital pregnancy test, PREGNANT!  We were so excited, it wasn’t long before our parents and friends were told the good news. I called my ob/gyn to make my first prenatal appointment.
Draggon put the “What to Expect” app on my phone and every day/week I eagerly checked it to see my baby’s progress and development.  It told me her size by comparing it to different food items. She grew from a tiny little poppy seed to the size of a blueberry by week seven. At my first appointment I was told I was about six weeks along. That seemed a week behind to me but I didn’t think twice about it.  I got to see my little blueberry’s heartbeat.  It was way too small to listen too, but there it was on the screen.  I left the appointment happy but awestruck; the reality of it all still had not sunk in.

My pregnancy was not an easy one. Early on I had very bad morning sickness all day long. I couldn’t eat much, I had to eat whatever I could get down and at times that meant days of just eating pizza rolls or cherry tomatoes.  I tried to stay healthy by forcing myself to eat some fruits and veggies every day. Almost everything made me feel sick. I started school again in March and I remember sitting in class with a container of crackers and a bag or preggie pop candies. A few people had mentioned to me that morning sickness meant that I had a lot of hormones flowing through me and that that was better for my baby, so I tried not to complain.  Whatever was good for the little one, I could handle it. Luckily I started to feel much better around week 13.
Draggon was so happy.  He would sing to her in my belly every morning when we woke up. Despite the nausea I loved being pregnant.  I didn’t mind when people touched my belly.  Being the school counselor, I often get hugged by our younger students.  I thought of each hug and touch as a blessing. We got a Doppler device that would let us hear her heartbeat so as the weeks progressed we would listen to her movements and heart.
We went for our first regular ultrasound at around 14 weeks.  The baby was moving and hiccupping like crazy. The tech was trying to get measurements and my blueberry (much bigger now but the nickname stuck) was being feisty and not turning around. She was strong willed from the beginning. However, since she was turned the wrong way, we did not get to find out the sex at that appointment.  But it my heart I knew it was a girl.  I never really had a preference until I got pregnant, but at this point I remember wanting it to be a girl so badly. But we would have to wait to find out.
 The doctor told me that they would call me when all of my blood tests and us results came back. She said that if everything was fine, they would leave me a message, if there was a concern they would ask me to call their office. No worries, I went about my life.
The Tuesday of week 16 I had a message on my cell phone “Angira this is the nurse at Dr. Merritt’s office, call me back when you can”.  I was still at work, but it was time to go home, so I dialed the ob/gyn office number.  As I was on hold I remembered what the doctor had said about how they would inform me of my test results. Something was wrong.  I started to cry. I called Draggon in his classroom and told him to come to my office quickly, that I was on the phone with Merritt’s office for our test results. By the time the nurse came to the phone, Draggon was there and I was silently bawling. She started to talk; something about a 1/67 chance of spina bifida and Winnie Palmer would call us to set up an appointment for a high resolution us.  I handed to phone to Draggon and stepped into the bathroom. There were teachers and students in my classroom for afterschool tutoring so I did my best to pull myself together. When I came out Draggon was off the phone. “We need to leave, quickly”.  I held my tears until we got outside the classroom, and then I cried for three days.
 We had our high resolution us appointment for that Friday.   I was so worried about what we would find out.  “We will love our child no matter what” Draggon said. Of course that was true, but every parent wants a happy, healthy child. As the tech started the us, she mentioned that the spine and head looked normal. Relief flooded into me. I still had to wait for the doctor’s official word, but I found I could breathe again.  Then the tech asked if we wanted to know the sex.  Now that my worries were relieved I became excited again. “Yes, Please” I said.  IT’S A GIRL!!! Joy upon joy this day! As we left the appointment I called my mom to update her. “She is fine” I told her. “Oh thank goodness, Oh it a girl!” We went out to celebrate and as we were eating lunch I said to Draggon, “I cried my first tears of worry as a mother; I guess I will have many more as our little girl grows up.” Sigh
Usually I am very cautious, but being a first timer mother I didn’t know what was normal and what to be worried about. I worried about everything anyway. I was very careful not to eat any soft cheeses or deli meats, and all of my household products were organic.  I made sure not to take too hot showers. I don’t drink or smoke.  I foolishly thought this protected me and my baby from any serious issues.

 Around week 18 the itching and swollen hands and feet started. I figured it was all normal pregnancy stuff.  The itching progressively got worse. It was all over my body with no rash and it kept me up at night. Draggon would put lotion all over me while I tried not to scratch my skin off.  I mentioned this to the MFM doctor at my next us and he mentioned a “sludgey bile” issue.  He requested some blood work and prescribed some medication.  Out of fear of harming my girl, I held off on taking the medication until the test results came back. The results were normal but my itching progressed.  I was up all night crying and had bruises and bloody scratches all over my body from my nails as I tried to get some relief.  I felt like I wanted to tear my skin off. I started to look up the symptoms online and came across Cholestasis of Pregnancy. I started to get concerned since it could be dangerous for the baby. I called my ob/gyn and they prescribed another blood workup.  I went for the blood draw and then began taking the Urso that had been prescribed. This was on Monday of week 24.
 The next day I went to my regular ob appointment. They took my weight and blood pressure. My BP was high, 140/95. The doctor came in and told me that if my pressure was still high at the end of the appointment, she would send me to WP emergency. I wasn’t worried since I felt fine.  I was more concerned about the horrible itching.  She checked my BP again and it had gone up.  She told me to start a 24 hour urine collection and told me to head straight over to the ER. When I got there they checked my pressure.  It must have gone down slightly since they sent me home.  They put me on bed rest and told me to monitor my pressure.  I spent that Wednesday in bed. I had to cancel the appointment to finalize the menu and decorations for Shreya’s baby shower.  But I still was not worried, at the time I didn’t know the dangers of high blood pressure, and I felt ok.
 Around 2 am Thursday I woke up with a weird headache at the back of the head.  I had gotten it a few times before, but attributed to stress. Draggon checked my BP, it was 160/110.  We decided to go back to the hospital.  They admitted me instantly and gave me steroid shots to speed up the baby’s lung development.  They told me it was just in case they had to do an emergency c-section. After doing more ultrasounds and tests, they took me up to a room. This was around 7 am.
They asked me if I had been having any vision changes, headaches etc. I said yes I had been seeing flashes and spots but since I had macular degeneration, weirdo vision issues were not new. I was also very swollen, but didn’t realize until later.  I just looked like I had gained a lot of weight. Normal during pregnancy, right? They hooked me up to magnesium sulfate and other medicines.
About an hour later a very kind looking doctor came in.  She told me that I had severe pre-eclampsia and that I would be in the hospital until my baby was delivered. Depending on what more tests showed, that could be today or in three months; that they would keep me pregnant as long as they could.  Part of me was relieved. They had put a monitor around my belly to monitor Shreya’s heartbeat. This meant that she would always be monitored.  I sat for the next few hours listening to her heart rate and feeling her move and kick. I could stop worrying about whether she was ok, now I just needed to stay pregnant. By now my family had started to arrive at the hospital. 
Many doctors came in and out, checking me and asking questions.  One nurse came in to tell me the risks of delivering a premature baby so early. I still was not too worried; tragedy was not an option or possibility at this point. Besides, she told me that they would probably not deliver today.  They would keep me pregnant as long as they could. An hour later the doctor came in and told me to get ready.  “Ready for what?”  “We are taking you downstairs for an emergency c-section.” I started to cry. My family gathered around me and my husband and prayed. 
The doctor had told me that because she was so early, her lungs would not be ready.  She said that Shreya probably would not cry when she was delivered and that if she did cry I probably would not be able to hear her over all the other noise in the OR. 
She was born on July 1st 2010. The minute Shreya was born I heard her loud, powerful cry. My fear turned to joy.  She would be fine. She’s my tiny but mighty little girl, so strong. I have a video of this moment that I watch every morning. This was the only time I heard her voice.  They told me later that they had put in a breathing tube, but little Shreya had pulled it right out. She breathed on her own for three days, my amazing little girl.  One of the nurses brought her to me and let me kiss her twice before they took her to the NICU.
I couldn’t believe that I was no longer pregnant.  I kept hearing her heart rate in my sleep.  I kept feeling her move.  It took days for me to adjust to not being pregnant. The heavy meds I was on didn’t help. Draggon brought me videos and pictures of Shreya every day.  I couldn’t get up to see her in the first few days.  All I could do for my baby girl was to provide milk.  I held on to that one act of motherhood as much as I could do.

Seeing her in NICU days later was emotional. She was so tiny. She was 13 inches long and 1 lb 4 oz when she was born. And looking at her was so scary, she had tubes and wires and monitors. And the beeps! Every noise meant something different and it was rarely a good thing.  My heart still races when I hear something beep or ding.  I got to tube feed her and change her.  I was terrified to touch her, to hurt her. Terrifeid to care for my own child.  We were not able to hold her yet; we could only rest our hands on her head and feet. But they told us that eventually we would be able to Kangaroo Care with her, meaning we could hold her on our bare chests for an hour at a time. The though thrilled and scared me at the same time.  I couldn’t wait to hold my baby girl but I was so afraid to hurt her, she was so small, she looked so fragile.
I visited her as often as I could for the rest of my hospital stay.  I was in the hospital for six days.  The night they released me I put on my purple dress that I had worn to the hospital a week earlier. I cried and cried.  The last time I had worn this dress I had been pregnant. This is a thought I still have every time I go somewhere or do something else that I had last done while Shreya was still with me. 
We went down to NICU to say goodbye to Shreya.  I didn’t think I could leave.  When we got down to the lobby I just froze.  I was about to leave the hospital without my little girl. My arms empty, my heart left behind.
We were both on summer break from work so we were able to come the hospital many times throughout the day and night. There were many ups and down but they days passed.  The brain ultrasounds they did all came back normal, no major bleeds.  Her digestive system seemed to be working well. She had a blood transfusion and it seemed to make her stronger. Shreya began to gain weight and we were so happy and became more and more confident with every ounce she gained. We knew it would be a while before we could take her home but we dreamed and planned. We took all of the baby care and safety classes that the hospital had to offer.
One night, about two weeks after Shreya was born, her night nurse asked if we were ready to start kangarooing with her. They gave me a gown and asked to sit in the armchair by her isolate. They placed my tiny little daughter on my chest.  I placed one hand under her bottom and the other hand supporting her head.  Suddenly it was just me and her.  All of the tubes and wires and beeps seem to disappear.  I held her and spoke to her and sang to her. She smelled wonderful. I smiled like a fool the whole time I held her. Two days later Draggon got to kangaroo with her.  My heart melted to watch my husband finally holding his daughter. She was so tiny in his large hands. We were able to kangaroo with her three or four times each while she was in the NICU.  I treasure every moment I had with my baby girl.

On Wednesday July 28th we went to see Shreya like every other day.  When we got there the nurse told us that they Shreya’s belly had looked a little larger to her so they had done an x-ray, but that it had come back normal.  For weeks now Shreya had liked to be on her belly, she got very fidgety and her blood oxygen levels would go down when she was placed on her back.  But today she was lying on her back and seemed tired.  Also, usually when the nurses went into the isolate to change and feed her, she was very feisty, kicking and moving. But today she was not.  It worried me a little but they had not found anything wrong so I tried not to freak out.  Worry was not new to me at this point since I felt it for various reasons every day.
 As we left that afternoon for the shift change, I remember Shreya lying there looking up at us with eyes wide.  I will always regret this moment.  I feel as if she was looking at us, asking for help and we didn’t see it. If only…..
When we came back that evening her night nurse Diana was drawing some blood. She said that Shreya was not looking right and that she wanted to get a blood culture. My heart sank and panic began to creep in.  They started Shreya on antibiotics right away just in case.
The next day they informed us that Shreya had not urinated since the night before.  They were given her different medications to help her along. We sat right next to her isolate the whole day.  We talked to her. I read a few books to her quietly.  We did not want to oversitmulate her so we did not reach in to tough her.  She became more active in the evening but she still had not urinated.
 Late into the night Diana told us to go home, that she would call us if anything changed. When we got home I could not sleep.  This is the night that I lost hope.  I completely broke down. Instead of the usual prayers that I said at home and with Shreya, all my mind could say now was “God please help my baby”  I thought this over and over, no other thoughts would come to me.  “Why isn’t God helping her? I asked my husband. There was no answer.  The despair and helplessness overtook my mind and body, I couldn’t breathe. Draggon tried to calm me down and finally I was able to start thinking rationally again. But my fears did not go away.
 I called Diana but she did not answer. I called again but still no answer.  Finally Draggon called and got the NICU doctor. He told us to come in right away.  I remember the surreal feeling I had as we walked into the NICU.  All of the nurses and techs stood around looking at us.  I felt like I was dreaming and moving in slow motion as we passed them and headed into Shreya’s room. The doctor told us that she had in infection that was not responding to the meds and that her body was not releasing any fluids. They put her on a stronger ventilator and told us that things were not looking good. He told us that we needed a miracle.
This day burns in memory and I cannot relive here. Hopefully one day I can write about the last few hours of my daughter’s life.  I want everyone to know what she went through and how bravely she fought. But my heart is not strong enough just yet to do so.
Finally they told us that there was nothing else they could do, that we needed to say goodbye. We asked all of our family members to leave. I needed to be alone with my daughter and husband. They removed all of the wires, monitors and ivs. Only the breathing tube remained.  I held my little baby girl in my arms.  We told her for the millionth time how proud we were of her.  How she was our strong, beautiful good girl and we loved her so much, more than anything.  We told her that she had been so courageous and had always listened to us as we begged her to hold on, but now it was ok to let go. Draggon sang his song to her again –
 Up, up in the sky like a bird, keep on flying. Up, up in the sky all day.  Up, up in the sky like a bird keep on flying. Keep on flying til the break of day.
 Our little girl died in our arms on July 30th 2010. We were able to bathe and dress her and hold her and kiss her. We were taken to a family room where our family members could say good - bye. I kissed her little hands and face and buried my head in her little body. 
Shreya has taught me to be strong and fearless. She has shown me what it means to be brave and powerful.  She has also changed me into a better person.  I have more patience and compassion than I ever thought I could.  I want to strive to be a mother Shreya can be proud of.
My beautiful little Shreya is no longer here but she is far from gone.  I hold her not with my hands but in my heart and soul. My journey with her has not ended, just changed. And one day I know I will be with her again. I love you my sweet Shreya! 

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Anonymous said...

A beautiful story. I am so sorry for your loss. :( Hugs.

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