Tuesday, October 23, 2012

What happened

A cold. That's it. A rhinovirus almost every child gets several times by the age of one. She caught a cold on the first plane ride to London and 36 hours later she almost died in my arms. She has pneumonia with some resistant E. Coli bacterial infiltrate, but we are grateful that the longer we go on the lesser the likelihood of meningitis or NEC...which are far more dangerous but she is not stable enough for spinal tap to rule out the former.  She is at 40% on the ventilator and progress to wean her is slow but that is far better than 100% support with nowhere left to go like it was when she got there.  She had a good day with better blood gasses and they just lowered the amplitude on the ventilator, so that is one step forward. She is fighting the ventilator and trying to breathe on her own, and moving around and opening her eyes and angry when you change her diaper. They are giving her sedation to deal with the discomfort of all the tubes and wires.

She will probably pull through this now, but that was not the way it looked when we got to the Children's NICU. Even when she was only 2lbs during apnea episodes I was calm and confident that everything would be fine and knew it was normal for her development. With all we have been through there has never been a medical issue that was truly critical.  I have never come close to being so scared...I have gone in a day from rock bottom thinking about funerals and life with only one twin to thinking that once again this NICU journey will one day be over and I will finally have both babies home. She will probably be asthmatic now and it does increase the odds of developmental delays, but only time will tell and everyone who has been through this tells me not to worry about the future because it is pointless. What I do know is that the apnea alarm never went off so despite the shallow breaths and hypoxia she never went more than 20 seconds without breathing.

This is what happens with preemies. They do not have the immune system development and are not like full term babies, so you can take every precaution and still wind up in this situation. The doctor said it only takes moments and preemies can turn on a dime. It happened so fast. The only symptom was listlessness and eating less, but then it got better and I dismissed it as the disruption of routine, being at altitude, and the stress of the travel. My son was sleepier too, and her breathing was slower like his so I thought that was a good sign.

Then by the time I got to my house I had been awake 40 hours and was getting delirious, and the trip had been incredibly difficult and taken every ounce of strength I had left. Everything went wrong. Even when we got there they said we had a booking but no ticket. By the end I thought I was being paranoid. After all, do you know anyone that has been awake and hyper alert for 40 hours right next to two babies observing every tiny movement they make? I was doing everything I could to keep them quiet on a plane full of sleeping people giving me dirty looks when they cried, so I stuck a bottle in their mouth at any opportunity and the schedule went out the window since I didn't have a watch. We only got 1 bassinet on the first flight so I had to hold one at all times while my 72 year old mother in law got what sleep she could. The second flight went better, but that was after I carried two heavy carriers and a diaper bag all the way through the giant London Heathrow airport. They refused to help us or let us ride in their golf cart for the elderly and disabled because we should have had "pram" and wouldn't listen to us explain that strollers are not exactly doable in India. I also got in a fight with the numbskulls at the security screening who tried to confiscate all my bottles and formula. After a half hour while my babies cried for their bottle I won.

I was absolutely exhausted more than I ever have been in my life, even when I was awake for 72 hours when I was 17 years old. I'm not 17 anymore. Safe at home I relied on others to tell me she was okay and that my fears were unfounded.  Everyone held her and said she was just sleepy from the trip and she was back to eating her full bottle like clockwork every 2 hours.  There was no wheezing or wet sounds and her coughs had been dry and less frequent, and she sounded nothing like the babies with pneumonia that had been next to her in the Delhi NICU.  I had watched her breathing obessively since her Delhi hospitalizations. It was to the point that when holding her I spent more time observing her respirations than simply enjoying being a Mom and loving on her.

I slept for 12 hours to recover. But then when she wouldn't wake up for her last bottle and my mother came to me with her, the worst moment of my life happened and I had to rescusitate my daughter. I don't know how I was so calm, or managed to stay calm for an entire 24 hours after that but somehow I did. It was only when I was alone on the drive to the hospital yesterday that I finally broke down. I refused to see her for 24 hours until she was better, because deep down I guess I knew it was the only way I could function in this crisis.

My only other choices were to stay in India and lose my house and my job until cold/flu season was over in March, which is just not reasonable. It was airborne, so there was nothing I could have done on the plane that I didn't do. I have spent hours and hours second guessing every thing I have done since their initial NICU discharge, despite reassurances from everyone telling me not to do so. I'm almost past it now. The family therapist at the NICU here told me "...and you could have gone to the store here and the same thing happened so stop it."

We wonder if the Delhi NICU screwed up and she really was septic with bacteria in her blood and the false positive wasn't. That would mean she was partially treated and it came raging back. We'll never know. What I do know is that if this had happened in India she would be dead. She is requiring the highest level of care and it is a step above what they proved capable of to my husband and I. My pediatrician today confirmed that by getting her home to American medical care I did the best thing I could do for her. She is in what many people are telling me is the best NICU in the state and Oklahoma. 

Thank God they took an outborn back into a NICU despite the usual policy not to because of the risk of bringing in infections, because she is too small to have any business in a PICU. The dispatcher that I bullied during her medical instructions did great, and I made sure the paremedic told her so. I'm sure it was hard to tell someone what to do who answers your questions in order before you ask them and tells you what panel to go to in the instruction cards. The Carrollton Fire Department were great, especially Brent who understood my level of training and let me be a partner her care in the most critical moments rather than kicking me out of the room. When he told me my daughter had a pulse that was the moment I thought maybe this wasn't the end after all. When I started yelling at them to bag her because her respirations were inadequate he assured me they were about to and they had the right size ambu bag in the ambulance.

Carrollton police officer Shroeder was professional and kind.   When I told him what I did for a living and I understood he had to do what he had to do but make it fast, he assured me the interview as over and I could go to the hospital to be with my daughter. MCP ER staff and their neonatologist were fast to ventilate and care for her and get her transported to a qualified NICU. Dr. Treen at Children's is one of the most impressive women I have ever met and the best possible doctor she could have had when she was clinging to life. She did not sugar coat anything or dumb it down for us even though it was medically complex, and made some tough calls to throw everything they could at her to save her even without a solid diagnosis to go off of. Her call to try nitric oxide and a heart medication saved her.

I can't tell you how different and wonderful it is to be surrounded by friends and support, and I am so grateful for all their well wishes and prayers and offers of help. My mother and mother in law and father in law have been amazing taking care of my son and my stepdad and getting him into an Alzheimer's facility temporarily to provide us more help during this difficult time. It is amazing to have doctors and especially nurses who don't placate you and instead disclose tons of information and keep us informed on the slightest changes in her condition and treatment. The nurses are very knowledgeable and empowered and not intimidated by doctors, without any of the signs of sexism we saw in India. They have so much support personnel at the hospital who are there for every need, and will help me start them on the early intervention developmental therapies they will need. And the chairs are comfortable. Some wannabe gangbanger thug and his baby mama in the waiting room lit up a cigarette yesterday, and the staff were prompt to bust him and threaten to call security after I notified them. Yeah...that actually happened.

We are gowned and gloved and masked to see our daughter now and terrified of bringing what she has home to our son. We are taking and will continue to take the utmost precautions,  but in the future will not sequester our children for a year in the house with no visitors and try to recreate a NICU environment like some parents do. There is a reasonable compromise. Those that hold our children will have to scrub down and hand sanitize, and cannot have been sick or been around anyone who has been. There will be no visits to crowded places. Every surface has been wiped down with antibacterials and antibacterial soap is by every sink and hand sanitizer is in every room. We spray down each room in Lysol and everything Tara touched has been washed in steaming hot water. We continue to boil the water and steam sterilize bottles, nipples, and pacifiers just as we always have. But I will take them for a walk in the fresh air and show them off to friends and family someday soon when they are a little bigger and stronger.

Our pediatrician is a mother of twins and specializes in infectious diseases and international adoption, and today described for me how she had to give CPR to her own son who is now 7 and doing just fine...and hugged me as I cried. You could not custom make a better doctor for our situation. She gave our son a clean bill of health and talked through Tara's condition and assured us she should pull through and we did everything right. He is now getting American immunizations, approvals for the Synergis vaccine for RSV to protect them, and better medications for his GERD and constipation.

It is strange that the worst day of my life happened after one of the best days of my life when I came home and all the grandparents met their grandbabies. It wasn't perfect, but by now I've given up on preconcieved notions and expectations of how things will or should be. I even slept through my father meeting them. My husband lost his car keys and was late to the airport with the wrong car seats and I had to wait another hour and a half to leave until he could come back with my car once I handed him the keys. We realized our compact cars do now allow room for infant car seats and a 6 foot tall man to have enough leg room to hit the pedals. I didn't even know how to adjust the car seats to the babies size and had to figure it out on the fly.

But despite my delirium it was wonderful. My mother ran to meet me and cried as expected. Everyone was thrilled to see them and I managed a few pictures, though my mother in law was covered in vomit and pee and coffee so she stepped out of the photos. Being back to all the comforts of America  is wonderful. I speak English and am understood without playing charades. I can drive anywhere I want. People uses the correct lanes of traffic and obey laws. They have beef here. It was such a relief walking through my front doors into my beautiful home that my mother so wonderfully did the finishing touches on that I didn't have time to.

So I'll leave everyone with photos of the happier day of my life, and I know that someday many weeks from now there will be another very happy day when she comes home again and is healthy.


  1. I am sure you are so relieved. Hoping that she recovers quickly.

  2. I'm so glad you all got home. Glad that Tara is doing better. Never forget that you are an amazing woman to have gone through all that you have and are still sane and able to function. No doubt your EMS training was a help. Best wishes to all.