We were not actually thinking of having a second baby, but my older daughter was not very outgoing and was feeling very lonely. That is when we decide to have a second child. Who knew that was the start of all the trouble we are in right now. I had a very smooth pregnancy. I was working as a software engineer at that time and I worked from home most of the days, how cool is it!! to work from home when pregnant. I went into labor on July 26 at about 11.30 PM. We headed to Abbot Northwestern hospital, MN. Got admitted at about 2.15 AM and Mahiya was born at 4.08 AM on July 27. Me and my husband feel in love at first sight of her. She was so cute and was yawning in her father's arms right after birth. She was so adorable with thick dark hair. It was a joyous moment in our life.
The same night she was very sleepy and did not bother to wake up to feed. But it did not bother me much as I thought that is what babies do. We got home on the 29th evening. She totally refused to feed right after we got home. I tried to feed her every 15 mins but she won't latch and was sleepy all the time. By 10 PM she got really irritable and was crying non stop. When rocked for half an hour she will fall asleep and then wake up in 5 minutes and start crying again. Finally we got her to sleep at 4.00 AM and she did not wake up to feed at all. She did not have a wet diaper since 9.00 PM the previous night. I kept telling my husband that something is wrong but he said everything is fine. But I could not rest, so I called the pediatrician' office to get an appointment, but there was no opening. But a nurse practitioner accepted to see her. We went there at 11.00 AM. The nurse put a finger in her mouth and she was sucking fine. So the nurse said try to pump breast milk and feed her with a bottle, 2 oz every 2 hours. If you are not able to do that or if she does not have a wet diaper by 6.00 PM take her to the ER. We got home and were struggling to get the milk in and we were waiting for a wet diaper. Actually we were scared of taking her to the ER, thinking of all the pokes. We actually waited little longer until 10 PM, but no wet diaper. At 10 PM my mom kind of felt that we need to take her to the hospital immediately. My older daughter was clinging to me and was not letting us go. It was very hard to leave her back home. We headed to the children's Hospital, MN. By the time she was admitted it was 1.00 AM. The nurse at the ER was very unhappy with me, when I told her that she has not peed in 24 hours. She said you should have brought her in earlier. Even at that time I was thinking it must me just a mild infection and she is going be just fine. They put in a IV line in her hand, she did not even show slightest resistance, that got me worried. Actually she had slipped into coma by that time and we did not know. Another line was put to her umbilical cord to draw blood for testing. Her blood was tested for everything under the sun, with no answers. Finally at about 10 AM the doctor (Dr. Anne Bendal) came in and said her blood ammonia was 330. We had no idea what she was talking about. She said she has a metabolic disorder and she has to be transferred to University of Minnesota hospital which was about 5 miles from there. Everything was blurry and we were so confused and not even in a state to ask many questions. The doctor said that you will get to know about it better when you meet the doctor at the UOM. She was transported to UOM. Me and my husband hurried to the car and started to drive towards UOM with so much running in our mind but could not even talk to each other. We kind of got lost and it took us an hour to reach UOM. And when we got there she was in the PICU, thank God they did not wait for us to start her treatment. Ammonul was started immediately. Then Dr.Schimmenti came in and she looked very worried. She tried to explain her disorder, Citrullinemia to us, we were so perplexed and it was too much to take in. But she told that usually most of the babies come in with ammonia of higher than 1000 and thank God you acted fast and Dr. Bendal did a great job of getting an ammonia. We can never thank Dr.Bendal enough, as she caught her disorder earlier.
In PICU I could not even look at my baby with all her lines and NG tube taped to her face. She was just lying there with no reflex or movement. I went to the family room and sat there crying. I felt so helpless. At that time I meet Kayle, she was a mother of a 11 month old boy who was undergoing a heart surgery. But she looked so cheerful and full of energy. She came closer to console me. I told her our story and she felt very sorry for her. She said you have to go and stay near your baby all the time and talk to her, all she know is you, your voice and your touch. Your baby needs you. Her talk made me realize how stupid I was and I thanked her and went running to my baby. I asked the nurse if I could hold her. She said absolutely. It was the time she was coming out of her coma. Her ammonia came down to normal range in 36 to 48 hours.Then we were transferred to the regular floor with a NG tube for her feeding and meds on Aug 1 Sunday. Then she started taking her bottle. But she won't take her meds. If we force her meds in then she won't feed after that. We then decide to place G-tube. Her G-tube was place on Aug 6,2010. It was a very difficult decision to take, but we will never regret it. It has been a life saver since then. We got home on Aug 10, 2010 with all our meds, formula recipe and strict feeding and meds regimen.
