Happy Halloween

Only one day has passed that I didn't get to the hospital to see Tara. Halloween. Halloween was like something out of a horror movie. I was working on one of many home projects and noticed a red welt on my foot. Then there were two more and they were spreading. I thought this was another one of my allergic reactions to an as of yet undiagnosed substance, so lest I have to use my Epipen and call an ambulance and go the the hospital I quickly down enough benedryl to take down a small elephant and then swallow some steroids. Vivek is fast asleep in the swing he absolutely loves in the living room, and I wander into the kitchen to sit down. I notice some flies near the ceiling fixture and am annoyed, and decide to by some fly strips tomorrow.

Then I realized they are not flies.

They are wasps. 6 of them. Yellowjackets. I never felt any stings on my feet, but Occam's razor tells me that is probably the reason for the welts 10 minutes previous. I fortunately had some wasp/hornet spray in the garage that I don't remember buying but am infinitely grateful I had. I begin spraying the bastards one by one and they instantly drop dead to the floor. Good stuff. Unfortunately this also means I am spraying poison over every sterilized surface that I prepare my babies formula and bottles on. I later had to spend hours scrubbing the entire kitchen from top to bottom and re-sterilize every bottle and nipple and object in the kitchen.

I realize two things. They are coming in from somewhere and I have to stop them. I also have to get my son out of here so he doesn't get stung when I run out of spray, or exposed to the poison I am spraying, or to the poison the exterminator will use once I find one in a jiffy.

I worry they are coming from my attic or an air duct, but then I open up my kitchen window curtains to look in the backyard. There are hundreds upon hundreds of them swarming all over my backyard and porch. They are coming in through the dog door and a spot where I need to replace the weather stripping on the French doors. I tape off the door seams and close off the dog door, and then kill the 6 more wasps that have gotten inside.

I Google my city and the word "exterminator" and call Abbott Exterminators because they start with the letter "A" and came up first. Very luckily they seem to grasp the urgency in my voice and have a guy that can come right away and lives close. He is a little condescending on the phone telling me to stay calm and they won't attack me, but he doesn't seem to understand that I have to kill the ones in my house and can't let them fly free because of my son. I'm sure he also told me to calm down because the string of obscenities coming out of my mouth while I killed the buggers would make a sailor blush.

I call my Mom who quickly grasps the urgency of the situation and races over barefooted in 5 minutes. We run out to the car and I throw in a hastily prepared bag of necessities, then stick his car seat in her front seat without a base and tell her to drive the two blocks to her house very carefully. I find out later she had to call a neighbor to help her figure out how to unbuckle the seat to get him out!

It turns out we had 4 nests up in our backyard tree and one on the side of the house. In 8 years of living here we have never had a wasp problem, but this summer they decided our house was Las Vegas. A bird or something must have stirred them up and made them swarm during the evening forage. The exterminator had some backpack that looked like it belonged in Ghostbusters with a snowblower nozzle, and he sprayed and fogged my entire backyard and all the trees and bushes and the side of the house. He said the poison is strong enough that if they even land on any surface or return to a nest then they will die instantly. I also noted he did all of this without a mask on. That can't be healthy.

On the bright side, finding a regular exterminator was on my list of to do's so he told me he would handle the wasps for free if I signed up for a quarterly service. I told him it might be the truckload of benedryl talking but it sounded like a great deal to me, so I signed something I didn't even read. Fortunately my mother volunteered to take Vivek for the entire evening so I could slip into unconsciousness. On the bright side of that it primed me to stay up all night and switch my body over to night shift.

So for the next two days as an extra safety measure we kept the dog door shut off to make sure they horde died off and to keep our dog safe from any residual chemicals. We have a seriously dumb dog. When we take him on the leash out front to go to the bathroom, he gets all excited and tries to bound off on a walk but won't go to the bathroom. Vinnie finally gave up and walked him into the backyard just past the gate and he finally pooed and peed what he had been holding in during his front yard excursion.

I did manage to purchase some cute Halloween outfits and pumpkins the day before for some photo ops, though I could not find anything truly sized for a newborn after searching 3 superstores and was stuck with cutsie oversized theme outfits and not proper costumes. Maybe next year. I really really reallly wanted to take them to a pumpkin patch for their first Halloween for some cute photos, but I just couldn't risk exposing them and for Tara it was not meant to be. Maybe next year. However I devised my own plan for some cute Halloween photos with a hastily carved pumpkin and a little bit of patience.

I haven't allowed myself to feel sorry for myself for more than a few minutes that things aren't the way I want them to be right now. But when I missed seeing Tara and taking her Halloween photo because of the whole wasp/benedryl fiasco I was truly upset. Fortunately a wonderful nurse at the NICU the next day promised me that if I left my camera she would put her in the outfit and place the tiny pumpkins around her and grab some photos for me when she was in a less agitated state, because when I saw her she had just had a major bronchospasm and needed to rest and not be handled. Thank you nurse Danica and hairy armed guy holding in the pacifier!

I take it back...

So I walked in tonight all bummed out, prepared to wait out another week of watching her agitated and in discomfort and not able to hold her. Instead I walked in to find out she had been extubated an hour and a
half previous! No more ventilator!

It seems like every time someone seems to put a limit on Tara she tries to show them up. I'm so proud of her. She is such a little fighter and the strongest little girl I've ever met.

Dr. Schwendeman said that after he told me yesterday about the one week wait he realized that we were performing this balancing act between controlling her breathing but suffering the consequences of the secretions the breathing tube creates and the sedation required due to her agitation. He decided to do an extubation trial soon before I arrived, and she did well and had her best blood gasses yet! She is on full feeds and they are discontinuing TPN IV nutrition.

The doctor asked me if she eats like she sucks on a pacifier. I asked what he meant, and he asked if she gulped. I told him YES YES YES. It has always been a problem but in India they did nothing to help us, and I let her pace herself because even though she gulped she seemed to catch up breathe before her pulse ox would dip significantly. After the 2nd Delhi hospitalization on my own I decided to pull out the bottle at set intervals to pace her, but they told me not to use rice cereal I had brought as a thickener just in case. He said that since that is the case he is not at all surprised that she wound up back in the hospital twice.  He assured me that the occupational and physical therapists will help ensure that we have a way to deal with it, and when I questioned the charge nurse about it she told me a swallow study may be in order and they can use the rice cereal and special nipples to help.

This is one more thing that they did not do sufficiently in India, even though I know they had the capability to do a swallow study and had asked about it but was dismissed because they didn't think it was serious enough.  I'm more mad that they never took a sputum culture, because I suspect the E. Coli had been present for some time.

Would I still have our babies in India? Of course...how can I say otherwise when I have to mostly healthy babies and my dreams have come true. Are you taking a certain level of risk if your children are born very premature and very low birthweight? Yes. Everyone hopes they are not the ones whose children suffer that fate, but you have no control over that outcome. Especially with surrogacy. Don't get me wrong...they can do a pretty good job. But I see now more than ever the differences between US and Indian NICU's and at the highest level of care India cannot compare.

I got to hold her for almost two hours. I sang to her and for about 45 minutes she stared at me wide eyed waving her arms around.  I finally felt like I could comfort her. She is still agitated at times ad gets worked up, but it is easier to calm her. It was far more healing for me than her I'm sure, because the cavern inside me filled in just a bit and my hope of having her home soon lit up more brightly.

Slow but steady

Princess Tara is progressing daily. There have been many steps forward:

• Transitioning from the oscillator ventilator to a regular ventilator that only controls inspiration
• Discontinuing all antibiotics except one
• Being taken off nitric oxide
• Being taken off Fentanyl drip to regular doses and lessening of Versed--weaning off sedation
• Lowering of ventilator settings daily: oxygen level, amplitude, breathing rate
• Increased alertness and responsiveness
• Transition from TPN IV nutrition to orogastric tube feeds
• Increase in daily tube feeds to full volume and elminination of TPN IV nutrition
• Decrease in secretions/suctioning; Lung scans becoming clearer
• Removal of one IV and PIC line

Now we are at a stage where she is just healing and for maybe a week she will still be on the ventilator with no more major steps foward for us to look foward to in the daily report. She is so strong and makes me so proud, and I feel so horrible that I cannot do much of anything to comfort her. My presence seems to stimulate her more, and right now the more restful state she is in the better. I keep my contact with her brief and mostly sit in the chair and watch her from a distance. They will probably jump straight from a ventilator to nasal O2 cannula and skip CPAP...which means I can hold her as soon as that happens. Until then it kills me to watch her become so agitated. She cries silently because of the tube in her throat, and sometimes after a diaper change it takes her 45 minutes to calm down!

I miss her like crazy. I love my time with my son but it is so incomplete without her here and it is like a giant hole in my heart. I don't want to miss anything. I want to celebrate every moment, even if it is not how I wanted it to be. So after being in a funk several days I'm forcing myself to take pictures again, even there is someone missing.

I am so incredibly grateful to all the help from family in this difficult time, even if two of them got colds and got kicked out of the house. I am also very appreciative of the meals brought by friends from church and the Metrocrest Parents of Multiples club. Adjusting back to life at home has been difficult and chaotic, but with the ability to just pop a meal in the microwave at anytime and freeze the rest to keep me going all month has made it infinitely easier.

There may not be any updates for a while, but we just have to be patient for Miss Tara to heal up when she is ready.

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.

Critical condition

Tara showed a little lethargy on our way home, but then declined rapidly after our return to the states. She was giving dying breaths, so I performed CPR. She is alive but critical and on a ventilator. Still waiting to find out what this is, but bacterial infection or NEC is a possibility. They can be fatal. We do not yet know which way this is headed, but there have been very small signs of improvement.

Day 74: Coming home!

It was a miracle. My husband's amazing cousin Manu shook hands, sweet talked, cajoled and got us two exit VISAS in two hours at the FRRO yesterday! Then we bought plane tickets for late tonight at 2:20am!!! 

I couldn't believe it. Manu had the guys smiling and laughing at jokes. With his lease to prove residency and a copy of her hospital discharge paperwork showing medical issues that  made extra travel problematic, suddenly the road block of the birth state was no more! They actually didn't even bring it up, and Manu said they were very nice men. However the reception guy claimed that because my paperwork wasn't simplified in perfect order and I had extra documents in the stack and some originals instead of copies, that was the reason he had not put me through...which he did not say the previous day at all.  Not very honest, but I've been told to expect as much.

It only took one of the four men we dealt with to provide a roadblock, but with Manu's magic they helped us quickly. They wanted proof of a plane ticket already purchased, but we couldn't do that until the next day when Manu was on a business trip, and we wanted to get it done while he was still there to be a facilitator. However the guy wrote in "ticket confirmed" even when we had no proof!  Manu says this is how Indian Government is, and when you grow up with it you know how to deal with folks to get stuff done. I think if your surrogacy case has any complications like ours did that paying for a facilitator is well worth it, but fortunately we didn't have to because we are related to the miracle man.

This is one hell of a hard way to have a family, but well worth it.

I'm packed and well rested, but have a headache from stressing out about everything that could go wrong and am trying to relax. The final flight home had weighed on my mind from the very first trimester, and I hope that it has been a lot of worry that is mostly unfounded. I wish we had Vinnie with us, but it is just Mom and me working as a team. I may not sleep at all for the next 24-48 hours. But I think about how strong I've been from the years of painful infertility, the year of the police academy while working full time at a stressful job, the trips to Anand and initial failure, then the months of stressful waiting, then finally the scary premature birth and months of NICU and the final journey to Delhi. I'm strong enough to do this one last leg of the journey to bring them home.

Let's hope we get the bassinet seats, so we'll arrive four hours early to the airport. Let's also hope British Airways has the superior customer service to help us through this. I've got to not be so worried about how the babies potential crying will affect other passengers, because there is only so much I can do to prevent it. I'm more worried about their exposure to germs, but the same holds true.

I can't wait to see the joy on the faces of my family meeting their grandchildren for the first time, whom they each played a unique role in helping bring into this world and bring safely home. But most of all I just can't wait to walk in my front door and place them in their beds and take a deep breath and say a prayer of gratitude. I have a son. I have a daughter. I am a mother. I have a family. The biggest dream I ever had for my life has come true, and sharing it with those that I love makes the picture complete.

Day 72: If at first you don't succeed...

So I busted Miss Tara outta the NICU a 2nd time and she is back to her usual hijinks. It kills me to hear her cry for more milk and to not be able to give it to her, but I remind myself that I'm the Mom and will spend a lifetime setting limits for her own good. Here is a video of her getting a "palliative" feed at the hospital yesterday. The nurses agree she is a hungry girl, and I had to remind the rookie nurse to cut my baby off.

It only took me only 10 minutes in billing and 30 minutes waiting for paperwork/medical records because I know the secret: Arrive early, then be visible and slightly annoying instead of following orders to wait in the back room. Random note: While in waiting rooms at the hospital I have become a champion of iphone Solitaire and Minesweeper, and now am rocking Angry Birds.

So within a half an hour of getting home we loaded up and went to the FRRO. The best description I have found on line in great detail is located here: http://ourgeminidragons.emaginations.com/wp/?p=454

My worst case scenario rather immediately came true despite pleading and groveling in two languages....they told us we had to return to Anand because their place of birth dictates which FRRO must do the VISA. I am functioning on auto-pilot with little sleep because Vivek thinks 4:30am to 7am is happy fun playtime. Frankly have been through too much to get upset, so a very eerie calm has taken me over. We simply came home and I started packing and taking steps to get on the fastest flight to Ahmedabad and arrange for a driver to Anand and 3 nights at the Rama Residency.

The family urged me to look into other options like using connections and bribing government officials, because going back to Anand will be a giant pain and extra expense. Bribery and using connections is how things work, or rather don't work like they should, in India. Manu went into overdrive and found someone who told him that if we brought a contract style document with proof of residency in Delhi that they might be obliged to help us. He wrote something up stating we are their tenants that may be stretching the truth, and will go with us tomorrow for one more attempt. If that doesn't work, then we'll take the next flight out to Ahmedabad. I think I'm going to pack just in case and it might help me feel more like the end is really in sight for this trip. 10am tomorrow we'll see what happens.

It's been fun hanging out with both babies again, and things are back the way they should be. Tara has been hanging her hiney out in the breeze all afternoon since she has an awful diaper rash from the stupid NICU not changing diapers frequently enough. It's already looking better from fresh air and liberal applications of Desitin. I'm realizing though that a little goes a long way and I have two econo tubs at home that will likely last me until potty training.

We hang out a lot on Dadima's bed since she bought a rubber blanket for that purpose.

Vivek is getting more active and grasping like crazy, but he is literally busting out of his clothes. I was very sad to do it, but realized I had no choice and cut the feet out of his sleepers. I stretch the cotton out as much as I can before putting it on him but you can see it pulls at the snaps. Tara's clothes will last the next 5-7 days we are here hopefully, but she is growing fast too. Why oh why did I tell Vinnie not to bring the newborn size clothes!

I asked Vivek his thoughts on the Indian bureaucracy we have to navigate and the crowded waiting room they insist I must bring the babies despite the risk of exposure to infection.