Sunday, October 28, 2012

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 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.

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.

Monday, October 22, 2012

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.

Friday, October 19, 2012

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.

Wednesday, October 17, 2012

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:

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.

Tuesday, October 16, 2012

Day 71: Discharge and FRRO tomorrow

Princess Tara has been given the green light for discharge tomorrow. We've geen given instructions for how to prevent her microaspirations as I previously posted, along with a strict limit of 45mL per feed every 2 hours. She will possibly cry for more, but we have established now that contrary to what the doctors typically say for most babies do not feed until she seems full because she does not recognize how much is too much. She gained 350 grams in 2 1/2 days from her last discharge, so she eats more than she can handle and retains water and it puts strain on her kidneys. I can get on board with 45 mL, just not 30mL that causes weight loss and extremes of hunger. He did say if she seemed very hungry we can wait an hour between feeds and top her off if needed to avoid reflux issues.
So today has been a frenzy of getting the passport photos resized to the correct size (I hate you guy from Karan Studios in Anand!) as well as printing out applications for the Exit VISA. Tomorrow we will go to the FRRO, and after that is over I think my usual positive outlook will totally return. I guess I'm just too afraid to get my hopes up lest something go wrong. I'm not above begging should they put a roadblock in our path, because I'm told the FRRO is the toughest step with the most Indian bureaucracy to navigate.

My husband is now safe at home in America. It was tough to say goodbye but we hold out hope it won't be for long. We spend little time with family here to keep risk of infection at a minimum, so Minnie took us out to dinner for our first outing in Delhi and it was a nice change of pace to be outside and be with everyone. All the kids joined us, and we ate at Nirula's Potpourri. Vinnie had good memories from childhood because everyday Mon Uncle would bring him a pizza from there because he was a little brat and he would only eat that, corn, or Choco Nut ice cream the entire time he stayed in India. His tastes have widened slightly over the years, and let's hope his children aren't that particular! This is his 9th trip to India, and hopefully his last for a good long time. I think we have had our fill of India, but next time we come it will be with a tourist mindset and itinerary and I'm sure we'll have much more fun showing the twins their country of origin.
Meanwhile Mom and I are biding our time waiting. I'm watching old TV episodes Vinnie downloaded to my computer and it makes the hours pass faster. I enjoy my time with Vivek but he does sleep an awful lot and Dadima doesn't share well. Geeta is a joy to be around and such a huge help, and I trust her completely with the babies. I got some cute shots of her talking to Vivek when she didn't know I was watching and sneaking photos.

Saturday, October 13, 2012

Day 69: One step forward, two steps back...

So Tara is back in the NICU, but this time we think we have a correct diagnosis that identifies the source of the bigger problem. Her breathing has been too fast ever since she got to Delhi, and the infection/bronchitis that brought her to the NICU the first time may have been related to this problem and not the virus I had tried so hard not to pass onto her. We think now the issue is "micro aspirations " related to her GERD (gastro-esophogeal reflux disease common in preemies).  During gestational week 37 the week before last when we got to Delhi we discontinued the domperidone that treats GERD as Dr. Kothiala had recommended. Dr. Saluja asked if they were still throwing up after eating in regards to this decision, and soon after Vivek was so we put him back on it.

But Tara wasn't throwing up. Not fully anyway. After and perhaps during feedings she was throwing up a little but it never made it out her mouth and instead was going into her lungs a little at a time. It was very imperceptible, and perhaps we didn't realize it because in comparison to Vivek who is a grunty loud eater her feeding seemed peaceful and a cough or two seemed normal because he would typically cough once per feeding and need to be slowed down too. Then last night during the car ride to the ROP doctor she must have aspirated a larger amount because that is when the wheezing began along with a cough. It worsened overnight with each feeding and Vinnie and I spent the most worried night of our lives. It was partially worsening because she was so hungry from her previous stay at the NICU that she was always crying for more food, so we gave it to her and it exacerbated the problem because a full tummy made the reflux worse.

In the morning I was nearing panic, and while desperate to take her elsewhere other than Sir Ganga Ram NICU we realized there wasn't much choice and the situation was too urgent. I recognized she was in severe respiratory distress and I walked as fast as I could after Manu drove us quickly there. I blew past two custodians and security at the NICU doors and walked up to all the nurses and held out my baby girl to them and said "Tara!" Then Tara gave a wet cough and one nurse snapped into action and grabbed her from me. The nurse moved fast and they put her under an oxygen tent, and I went and sat down because I knew now she would be okay. Her oxygenation was in the 70's so we got there just in time.

Tests confirmed there is no fever or infection, and it is not technically aspiration pneumonia so she is being moved out of the "infection room" and into a normal room tonight. She will probably be there a few days, and upon her release first stop is the FRRO to apply for the VISAS to get the hell out of here. I plan to discuss the possibility of using the rice cereal I brought as a thickener for her feeds to help her reflux, which I'd brought because they did that as an option for my brother's twins in their NICU. Simply Thick is used for this purpose and is essentially xantham gum additives, but I'm told you can't use that until they are older. From now on she can be treated by more frequent smaller feeds, domperidone, and maintaining a more upright position at all times. I have no clue how I'll managed to keep her tilted during diaper changes, but I'll figure it out. Tonight when I visited her she was resting peacefully on her tummy, and has a nasal cannula of oxygen and is tube feeding to help her rest and recover. They said they could use CPAP if needed and sedate her because she was so hungry the crying was interfering with her breathing, but it looks like neither of those more extreme measures were necessary.

Vinnie and I put together all the documents we need and tomorrow we will fill out and print the application and make some copies of all of the passports.  After the 11:30 counseling session with Tara's doctors we'll have a goodbye lunch with family for him. I've packed a bag of less essential baby gear for him to take home, and with all I'm leaving here or used up (diapers/wipes/formula) I should be able to travel home with minimal luggage. The end is in sight but I know I'm probably looking to fly out the week of the 22nd. It will be so much harder without Vinnie, but my mother-in-law is the rock that is keeping me sane because no way we could do this without her.

Now the only problem left to solve is that Vivek is getting too big for preemie clothes. I deply regret my decision to tell Vinnie not to bring newborn size clothes with him, because I figured they wouldn't get big enough to grow out of them before we got home based on their growth rate. Big mistake. Vinnie's solution was to cut off the bottoms of the onesies where it snaps, and cut the feet off of the sleepers to make room. I told him I wasn't ready to cut up all their baby clothes, so we have a few outfits left that are washed constantly that make up his small rotation of outfits. I have no idea why in the biggest city in India you can't find newborn clothes but only toddler sized, but I can only assume that it is because they just used diapers and blankets until the kiddo can walk.

Friday, October 12, 2012

Day 68: Certifiable

Great news today!

Vinnie picked them up at the embassy today along with the CRBA certificates that state our children are United States citizens.

We also made a long trip across town this evening to an ROP surgeon and all is clear so far. Vivek is out of the woods and Tara will need one more checkup in two weeks, but by then we'll be back in the US.

Vinnie leaves in the early AM hours Monday, and Monday morning at 9:30 I'll be at the FFRO applying for the babies VISAS! It normally takes 1-3 days, so barring any problems we could be out of here by the end of this coming week!!!

Thursday, October 11, 2012

Day 67: Home again

So it took half a day after we were told discharge was in the morning, but we finally busted Tara outta the NICU at Sir Ganga Ram hospital. Hours of waiting. They would just make up stuff to tell my husband what was taking so long, true to their informal policy to placate rather than inform parents. He was stuck for hours in billing, and it took another hour just to have someone walk her medical records back from there so that we could get a copy. There are no laws to protect us and we have no power here, so we got only $100 back despite a dangerous and painful procedure being done and medications given unecessarily due to their medical error. They gave me a tiny sheet of paper to put any suggestions on at the end, which I filled up front and back. I doubt it will make a difference.

Everyone kept telling me to calm down and not get angry, but clearly they only got anything done when I was making a stink. The doctor who spends a whopping 5 min with my daughter daily still thought her breathing didn't look entirely normal, and wanted a repeat echocardiagram. I frankly think he and his staff are misidentifying "retractions" in breathing because her brother's breathing pattern looks the exact same and she always breathes fast when she is hungry, which she always was there. Since she's been home she has easily eaten double what they fed her there without a problem, and just 5 minutes ago she almost ate triple after she cried for more when the bottle was done.

Anyway, the pediatric cardiologist Dr. Singh was obviously annoyed that they asked him to repeat the procedure he had done 7 days previous because they were implying he had missed something. The line they fed me was that they were making sure the PDA (Patent ductus arteriosis-an arterial hole all babies have they closes late in preemies) had not gotten bigger and become more significant. When the procedure was done Dr. Singh turned to me and said "Congratulations...the PDA has closed." We were both obviously vindicated, but I think I was the only one fighting the urge to yell "In your face! Boo yah!" to the primary doctor.

Now that Tara is home things are back to normal, though she is more alert than ever and cries more...probably because she knows her cries won't be ignored here. The biggest frustration since she has been home is that she is on a 2 hour feeding schedule after we worked so hard to get them both on a 2 1/2 hour in order to move gradually towards a 3 hour. Back to square one. By 1 hour and 45 minutes she is screaming for food, which she never did even when she was on a 2 hour I figure she is just very hungry trying to gain back all the weight she lost. Vivek is not complaining and has gotten on the 2 hour wagon, so hopefully early next week we can move forward again to a 2 1/2 hour schedule. Vinnie is on board with my cardinal rule of twindom to keep them on the same schedule at all times lest we never sleep again. At least we have Vinnie here a few more days as well as Mom and Geeta to help out so it is manageable. I've even found a way to position them so that I can put bottles in both mouths at the same time to help them stay in sync.

Subhash's sister Bebi Auntie is taking a train trip from Chandigahr to here to see the babies and stay the night, so tomorrow should be  fun day aside from the trip to a retinal surgeon for one last ROP checkup. Vinnie and I are busy trying to prep for the FFRO/VISA appointment, which as we thought will occur after he leaves on the 15th. I hope tomorrow the embassy will have good news and we can pick up our passports, but it may not be until next week. I can't wait to get home!

I did an "exit interview" with Tara discussing her experience at the Sir Ganga Ram NICU, and here are her reactions:

Tara ponders her feelings about the week away from her family

Tara considers the attitude of the nurses

Tara's reaction to her father only being allowed 10 min a day with her

Tara's reaction to having IV antibiotics into her foot

Flashback to the spinal tap procedure
I asked Vivek what his feelings were on having his sister finally home and having to share some of the spotlight again.

Monday, October 8, 2012

Day 63: Part Deux-Deus Ex Machina

So tonight when I'm making my 2nd visit to my daughter and singing The Rainbow Connection into her ear and pondering how I'm singing a song about faith when I have so little at the moment, the doctor walks up to me and tells me they are moving her out of the sick room of infected babies. I tell her that makes me happy, but why? She avoids the question. I ask why again. She then tells me they now think the blood culture was contaminated because they are all coming back completely clean now, and so she probably only had a viral infection in the first place.  It was probably all a false positive.

You know that famous photo of the Navy sailor in the ticker tape parade who is so happy he grabs the nurse walking down the street and bends her backwards and plants a huge kiss on her lips? I swear I almost did it myself.

This means that under the original "viral infection" diagnosis she should be discharged very soon rather than 10-14 days!  I'll get it confirmed with our primary doctor tomorrow at 11:30 counseling session, but they have to be pretty sure that her diagnosis was wrong to move her back into the regular NICU rooms right?! 
Tara hanging out with her Daddy on the bed before her hospitalization

This begs the question....should we argue the charges for the dangerous and painful spinal tap procedure and the antibiotics that she never needed in the first place? I now understand why people sue for pain and suffering because I know for the past 2 days I've been suffering tremendously, as has the entire family. Manu had sage advice to wait until she is discharged and in my arms before we argue anything, but he or Shalini will be there with us to fight the charges. It is not unheard of for medical records to get doctored here after the fact for shady purposes, so we will definitely take his advice.

I chatted with a nurse tonight about bathing Tara because a ring of greyish skin that sloughs off is around her neck, and she said she is bathed every morning but she will be more careful and work on that spot and it make take a few days to get it looking normal again. She also told me they change the diapers every four hours, which suprised me because I change at every feeding at 2 1/2 hours and it is always wet or soiled. She did say if they smell a dirty diaper they go ahead and change it thank goodness! Can't wait until she is at home and can get the royal treatment instead of her supposed VIP status.

I would love to tell you that Vivek shows some sign of missing his sister, but frankly I think he is just basking in all the extra attention and loving every minute.

He is quite the drama king, and howls in agony before he passes gas. Tara simply scrunches up her face and turns to the right (always the right side for some reason) and toots then moves on like nothing happened. She will sit around in a dirty diaper for two hours without comment, but if his is more than a little moist he will let you know about it. Worse yet, he won't stop fussing until the diaper change is almost over and you are fastening the last snaps on his outfit.

Geeta gave us all the giggles today and came rushing in the room holding Vivek saying "Hairdo! Hairdo!"  She placed him in my arms and I burst out laughing when I saw she had shaped his hair into a mohawk. She has been comforting me and trying to make me smile and laugh for days now, and I could see she was thrilled to finally suceed after cooking me special meals and offering soothing words and gestures even if I couldn't understand them all.

Mitlesh Auntie says she wants us to leave India with good memories from here. I told her we's just we've been through so much for two months now and we are so homesick. I explained that when you come as a tourist it is a very different experience. You spend your time in search of entertaining things, and have fun with everyday experiences. Let's say you need something from the store. As a tourist in India that could turn into a several hour interesting adventure seeking something, taking in the sights and experiences and working through the challenges along the way. It's the sort of thing you laugh about and tell stories about later. When you have twin babies to take care of and need something and are most definitely not here to be a tourist, it simply a giant pain in the ass. Like the other day when it took Vinnie four hours to mail a letter. But I'll leave you with something cute I saw when walking home from the hospital tonight that struck me as a touristy moment.  Next to the dumpsters were three cows sleeping with a small calf. But one of these things was not like the other. There was a stray dog that apparently thought it was a cow and was cuddled up next to the calf, and none of the cows seemed to mind.

Day 63: The Bitch is Back

If you were to ask me would I rather have Tara in this big city modern hospital that is much more comparable to an American one or back in the small NICU with Dr. Kothiala, I would pick Dr. Kothiala hands down without a second thought. This NICU is huge and impersonal, and despite the fact that they all seem to do a good job learning the babies' names it does not mean that they do near as good of a job treating them like little people. Because my daughter is septic (has a blood infection) she is in a room with all the other babies who could be contagious. Out of 27 babies here 4 are ventilated and those 4 are all next to my daughter. Not comforting for me that all the babies with infections are in such serious shape, or that my daughter is at constant risk of catching what they have if the nurses slip up. Combine that with the fact that all these critical babies need constant attention and care and my daughter who needs no special care aside from IV antibiotics 3 times a day needs and the standard feeding and diaper changes. My daughter is virtually ignored and they failed to notice that she cries 30 minutes before a feed because she is HUNGRY! I expressed 3 times to 3 nurses that she was hungry, and tried to tell them that on the 18th when she was discharged at 1884 grams she was eating 35-40 mL every 2 hours, she was eating almost 50 every 2 1/2 hours at home, and now when she is 2355 grams they feed her 30mL and try to blame the 155gram weight loss on the bacterial infection. I don't think so! After talking to 2 doctors they finally agreed to feed her more, though I had a not so nice conversation with the first doctor who tried not to listen and talked down to me explaining that because of her very minor PDA (YES I know what that is so put down your pen and stop diagramming on paper) they had to feed her less. In Anand at least they understood the simple principle that if a baby is hungry FEED IT! Her O2 sats are fine before and after a feeding so I even if her breathing is slightly heavier when she is full I fail to see the problem! I breathe far heavier than that after a Thanksgiving meal and they don't admit me to a hospital...though perhaps they should because eating that much turkey and stuffing and pie perhaps I need serious psychiatric counseling.

This morning I was shocked to see her weight loss on the chart, when another nurse who talks and doesn't listen tried took the chart out of my hands and told me hospital rules state I cannot see my daughter's medical records. I lost my temper completely. I told her that was an idiotic rule and in my anger I told her in America that would never be allowed, and there should be nothing they hide from me about my daughter's condition. I managed to hold my tongue when she said India and America are different, because I have a couple of inappropriate comments about that. I alarmed her so much she called in the doctor I mentioned previously and he said in my case he would allow me to see her chart, and it is only in the most severe cases they do not allow it. That defies reason, but I got my concession so I managed to keep my big mouth shut.

He actually tried to tell me that all the chart had in it was her oxygenation levels blah blah blah and I cut him off and told him yes I do know how to read and do know what it contains. I had half a mind to tell him that I have 15 years training and experience in emergency medicine as an EMT/EMD and have spent 1 1/2 months with two babies in the NICU so I know what an oxygen saturation is dumbass! What is in her chart is exactly what I need to know to understand how she is doing, more so than their daily "counseling sessions" at 11:30 where I find they do more placating you than actually providing you with information. I know they are used to Indian women who are not as assertive and take this "it will all be okay...just pray to God" attitude that drives me bonkers.

I also despise that they do not allow you to do the most simple things, such as taking a pair of tongs and taking a sterilized breast sheild and bottle out of the sterilizer. I have to wait for a nurse to do something so simple. I also have to wait sometimes for a half hour until a nurse is available to package up Tara for me to hold her. Firstly, they are too busy with all the critical babies surrounding her and charting and hand logging stats and levels every 15 minutes to pay me attention. Secondly, they have a system where a folded up blanket underneath the babies shoulders must be wrapped a certain way in a mediocre swaddle before the baby must be placed in your arms. This means I can't simple pick her up and hold her myself like I could in Anand and have to wait lest I upset a nurse who thinks I can't perform something so basic as well as she can. Today I seized the opportunity when a ventilator broke down and both nurses were tied up bagging the baby and trying to replace the ventilator, and put her back in the isolette myself. They couldn't exactly stop me.

Have I mentioned all the giant oversized gowns they give you to wear are either missing ties so that you have to hold them closed and have only one hand free, or they tie so loosely that they hang open so far down in the front that it defeats the purpose of germ shielding entirely?

I cannot express to you enough how hard it is to be in NICU AFTER you have had your baby at home. It is so much harder to accept all the restrictions when you have had free reign to care for your child as you choose for several weeks. It makes you so angry you want to type everything IN CAPITAL LETTERS!

The one bright spot so far is Charu. So from 10:15-11:00 the nurse facilitator comes in with the mothers in the feeding room and leads and informal educational session and offers guidance. Thank God. She speaks English, as do ALL the nurses (though with varying degrees of accuracy). She talked to me for a half hour answering all my questions and making sense of everything, and giving me much needed reassurance. I found out a lot of things that they were supposed to do during an initiation speech they gave me with a signed orientation sheet a day and half late.:

  • They only kick you out when they are doing a procedure and during doctor rounds, and a lot of the Mom's come in for feedings or care only.
  • You get a new gown at the counter everyday, and put it in a dirty bin at the end of the day. In the meantime put it in a bag in the Mother Feeding Room with your name on it.
  • Fathers may visit for only 10 minutes from 5-6pm. She admitted it is awful, but I understand that it is due to a cultural difference here that the father's role is not at all equal with the mother's.
  • Doctors do daily "counseling" at 11:30 am and call each mother in to discuss changes in the past 24 hours and answer any questions.
  • You can also get a bottle for pumping your breast milk into because they have them on hand and sterilize everything for you, and discourage you bringing things from home. They have an accreditation for being breastfeeding friendly.
  • The facilitator is clearly a lactation consultant and took one look at my cracked and bleeding nipples and launched into a bunch of advice, including to rub some breastmilk on them every hour since it has healing properties and she will give me a cream if it doesn't improve. She said even if I only produce 2 mL of milk they'll be happy to use it. What a relief. She leveled with me about what I am doing and asked me "how long will you really keep this up?" It made me re-evaluate my goals a bit and rededicate myself to breastfeeding...because exclusively pumping is just not going to cut it in this situation. I need to start using the supplementer, because their mouths are big enough to handle it and the longer I wait the harder it will get.

The other bright spot that has restored my sanity is that in 1-2 days we can move to a single room, where I will stay and care for her and I'll have to trust everyone else to care for Vivek at the rental house. I'm hoping it will cut costs, but Vinnie came with Manu and discussed the billing and confirmed it would not be more than the NICU is costing. But most importantly I can be with her and care for her and not allow her to lie alone and cry for a half hour! We can have visitors, and Mom or Vinnie can relieve me so I can visit my son occasionally. This is not how I pictured these last weeks of waiting, and my husband will be flying home on or just after Tara's discharge day. I may have to brave the FFRO alone. If we can get away with bringing 1 baby if passports come before he leaves then we'll do that.

The hardest part of this journey is about to start apparently. I've been so strong this entire time, and people tell me I've displayed many qualities of character that are admirable. But the day I walked into the spinal tap I admit it broke me and for a day I isolated myself and felt defeated and weak and most of all let a negative mindset take over. I've decided after two of the hardest months of my life I'm allowed one crappy day to feel sorry for myself. I'm back now.

An interesting side note...I saw that on my daughter's isolette label tag that identifies each baby's name and vital stats, someone had written "VIP" in the top corner. I thought perhaps it could mean "viral infection protocol" or something medical. So I asked a nurse and she laughed and pinched my daughter's cheeks and said "VIP baby!" and another nurse did the same. I guess it means what I think it means. I don't know if she has been labeled as a VIP because of my foreign status and they guess that makes me rich or something, or simply because I am a constant pain in their a** and so they should try extra hard to treat her well lest they incur my wrath.

Sunday, October 7, 2012

Day 62: Bad News

I walked in yesterday on them doing a spinal tap on my screaming daughter, wondering what the hell was going on. After it was over the doctor walks up to me with two tiny vials of her cerebrospinal fluid and tells me not to worry. Yeah right. He says bacteria started to grow in her blood culture. It is type gram negative. That means they have to start her on antibiotics and they are doing the CSF test to rule out meningitis, which is unlikely but can happen. I knew that meningitis was often fatal or permanently disabling. So there is about 36 hours left before the final test comes back to rule that out, and until then she is displaying no symptoms but I find that of little comfort. Until then, I'm in hell waiting and terrified.

Oh...and there is another bomb he dropped very casually the next day. The course of antibiotics is delivered 3 times per day via IV....for 10-14 days!!! It felt like a punch in the gut and he could see me obviously reeling at the news and I think I clutched my chest . Back when we were told it was viral I thought she might be discharged today. The doctor asks me "did you have somewhere you need to be?" I answered politely but in my head I was screaming at him. "HOME!! I NEED TO BE HOME IN AMERICA!!! I HATE IT HERE AND IT'S BEEN TWO MONTHS AND I WANT MY BABY AND I WANT TO GO HOME!!!"

I know there is a way to be positive. I know that I should be positive. But sorry, I don't have it in me right now. I have officially lost perspective and telling myself "it could be worse..." is no longer working. Did I mention this hospital charges 5 times what they did in Anand when all they do is give her IV antibiotics 3X per day but as of yesterday she is off CPAP and requires no other special care. Yet she is in the highest price category next to 2lb babies on ventilators.

I want my baby and I want to go home.

Saturday, October 6, 2012

Day 61: Return to the NICU

So Tara is back in the NICU with a viral infection and on CPAP. It goes like this...

The last few days have been full of baby care and waiting and intense nothing really to comment on other than our growing worry about Tara. It started when we saw the neonatologist on Tuesday he asked us if she always breathed so deeply. It was the first time I'd noticed it...and I wasn't sure. But after that point it was all I noticed, to the point I started to think I was paranoid. Then on Thursday evening I thought it seemed worse. We even thought she felt hot like she had a temperature, but the earscan thermometer said she didn't have a fever. I now think the earscan thermometer is a piece of crap even though the instructions were written for babies and plan on taking a rectal temperature from here on out. Anyway, Friday morning Geeta and Vinnie both said they thought her breathing was more labored as well and I decided I wasn't crazy and said we should take her back to the doctor, so we made a doctor appointment for 6pm that evening.

Dr. Satish Saluja told us that she was breathing too labored and was exhausted doing so and wasn't comfortable. He felt like she probably had a viral infection, and her pulse oximetry needed to be monitored. I gulped. I knew there was only one place that can happen....back in the NICU. He wanted her hemoglobin checked and blood gasses as well as a chest X-ray and perhaps some other tests. We rushed home and packed diapers and wipes and changes of clothes and then went swiftly to Sir Ganga Ram Hospital which is a 10 minute walk from the house but a 2 minute drive.

The waiting room is not a fun place because Indians believe that someone should never be left alone in the hospital. This means someone is camped out in the waiting room 24-7, complete with luggage and folks taking up entire benches sleeping. Everything was "claimed" and the only semi-unoccupied looking seats were off in the corner. Vinnie and I handed over our daughter, and I tried hard not to cry when the nurse took her out of my arms. The doctor said he was busy with another baby but when done would look over ours and evaluate her, then call us into his office for 10-20 minutes to discuss her case.

The wait was awful, but it wasn't too long. Dr. Sandeep told us that she was in mild respiratory distress, likely do to a viral infection. Her O2 sats were running 86-89 instead of the desired 90th percentile. He ran through the tests they would be running and assured us that she looked like she would be fine it would just take a few days of giving her supportive measures for breathing while she recovered. They gave her orogastric feedings again to save her all the effort of bottlefeeding. He started to explain some basics and diagram the lungs on a piece of paper but I swiftly told him that I was a NICU veteran and he stopped, as he realized this was not my first rodeo and I understood what he was talking about. As soon as he reassured me that mothers were allowed unlimited access to the NICU I relaxed immensely and could not stop a few tears from sliding down. Fathers are only allowed brief visits with special permission from the doctor. I think at that moment I realized that our roles had to shift and that I had to trust Vinnie and my mother-in-law to care for Vivek that night and day while I slept at night and camped out at the hospital during the day. He alleviated my fears that I had somehow caused her more harm by possibly missing a fever, and said that this kind of viral infection is common in all preemies and difficult to prevent. He mentioned the remote possibility that it could worsen and she could be put on a ventilator and I'm sure I turned purple at the thought in spite of myself.

I was issued a gown and foot covers and escorted to see her. I was relieved, and could see that this NICU was very good and had much better equipment than Dr. Kothiala's but the care was comparable. It looks a lot more like a NICU in the US. Dr. Sandeep was very friendly and reassuring, and pointed out to me how her chest retracted and that it worried him because it showed she was having more problems with inspiration than expiration. While the blow by oxygen tent at 5mL flow was giving her 100% oxygenation, he felt that putting her on CPAP would benefit her because her blood gasses came back and showed some mild acidosis. He asked if I knew what that was and I assured him I did, and agreed the positive pressure would be good to help her breathe easier with less effort for now. The chest X-ray came back while we were discussing her care, and I was intensely relieved to learn that it was clear and showed no pneumonia.

This all took several hours, and in the meantime Vinnie was doing battle with the folks at admissions and billing or waiting miserably in the exterior waiting room. I did call him once and go out and talk to him once to fill him in. All my waiting was done in the "Mother Feeding Room" where there was a bunch of other mothers, some who spoke English and were very nice to me. I don't have the free reign that I did in Dr. Kothiala's NICU for sure, and as far as I can tell protocol is that while your access is unrestricted you are expected to go in and see your baby for a few minutes and can even sit in one or two spare chairs for a while, but then you go back and wait in the Mother Feeding Room. They also kick you out at random if they need to do a procedure or if you are there too long I guess. I got kicked out twice, but eventually realized no one was going to tell me it was okay to come back it. It is completely stupid, but not as stupid as what Vinnie was dealing with at the time. They expected him to pay $1100/60,000 rupees up front. They expected him to just be carrying that sort of money around in cash. Crazy! They were rude to him and they actually called Dr. Saluja to "vouch" for him. It is a strange process and we got some wierd ticket that we must show that we have paid in order for her to be released to us. Vinnie had to repeatedly reassure them we would have the money by tomorrow. So today he can only withdraw 20,000 rupees (10,000 from each account) to add to the 20,000 we happened to have on us at the time, and will borrow from the family until we can go to the ATM the next day to pay them back. Don't you just love ATM daily limits?!

As we walked out to go home I told him I'd rather take a bicycle rickshaw to help calm me down in the cool air, which Vinnie agreed was an excellent idea as he hugged me tightly. Back at home I went straight to the kitchen and ate, since I had only eaten a small meal that afternoon and now it was late at night. Vinnie handled the barrage of questions. I took two sleeping pills and went to sleep as fast as I could while he stayed up with Vivek and then in the early AM traded off feeding responsibilities with Mom.

I awoke at 8am this morning after having an anxiety dream about blowing auditions for a musical in high school. I ate quickly, loved on my son for a minute, then took a bicycle rickshaw to the hospital. I memorized the way this time so that I could walk next time. I figured out how to get a new gown and that I am supposed keep in a bag with my name on it. Then I went to see Tara and insisted on seeing the doctor to get an update. Seeing her on CPAP wasn't fun, but I knew it was for her benefit and temporary. He told me that the blood gasses now showed her Ph more normal without acidosis, so the treatment is working. The bacterial culture is clear, so that confirms it is a viral infection and antibiotics won't be helpful. He said this will run its course in likely 3-4 days and she can be discharged, and he make take her off CPAP in the evening. But the most reassuring thing was to see her chest rise more normally and how easy she was breathing compared to how she was. I memorized it so I will forever know exactly what her breathing is supposed to look like so next time I will recognize very early when it is labored and can get her help sooner.

My new motto is "Do unto yourself as you would have your children do unto themselves." I am working hard not to pass on my perfectionistic tendencies to my children because I know they aren't healthy. I have been racked with guilt since yesterday, examining every moment trying to reinvent the past and think of what I could have done to prevent this or recognize it sooner. I mostly come to the conclusion that I could only have been a radical tyrant and locked them in a room with me alone and refused any contact with the family that we have relied upon heavily to help us in setting things up to live here. It just isn't reasonable or practical, but it doesn't seem to stop me from feeling guilty that I could have changed this somehow. But then I ask myself if I would want my daughter to be so hard on herself for her mistakes or be filled with unreasonable guilt. I tell myself I need to move forward and learn from my mistakes, but not dwell on the past and beat myself up and place unreasonable expectations because that is what I would want my daughter to do. I have to lead by example so that I can cause as little psychological damage in raising them as possible. With any luck, they may turn out normal.

Tuesday, October 2, 2012

Day 56-57: Moving forward

So yesterday evening the babies saw their neonatologist in Delhi. The doctor that Dr Kothiala recommended turns out to be operating a clinic that is a 3 minute walk away! He looked them over thoroughly and declared them to be healthy and doing well, and said we don't even need to follow up every week and he saw no need to perform a hemoglobin tests at this juncture based on what he is seeing. Vivek is 2410 grams or 5lbs 5oz, and Tara is shy of 2.2 kg or at 4lbs 13 oz. I think she heard us discussing Vivek's weight gain and became upset, because that night she went on a growth spurt and polished off around 10-20 extra mL per feeding. Her Daddy woke me up scared because she had been awake and moving for two hours which he had never seen, and I realized they were hunger cues and she slurped down an extra bottle then slipped into a milk coma. It turns out they have both gained the exact same amount of weight since discharge, and now both being over the 2kg mark makes me relax some.

Anyway, their new doctor was very good and didn't even get upset when Vivek peed on his examining table. (He is just about to outgrow preemie diapers so they tend to leak since he points up and to the right where the absorbency leaves something to be desired) He and Vinnie put their heads together and did some complicated math on formula and our supplements to calculate exactly what they were getting per day in everything from kCal to iron to individual nutrients. He determined they were getting too much iron and calcium and a few other nutrients, and declared we can switch over to the Enfamil PolyVi-Sol supplement drops Vinnie had brought from the US instead of the 4 other bottles we were using. This will make life much easier and they can be mixed in with a bottle without affecting flavor just once per day in a  small quantity, though it does not have Folic acid so we'll still use that one supplement. I am hopeful that the reduction in iron will ease their constipation and have them feel much more comfortable. He also advised us to give them gentle massages and physical and visual stimulation, so hoping we can get home to our box of toys soon because I only have common household items to dangle in front of them.

The doctor asked my profession and thought it was in the medical field because I seemed to have a strong medical body of knowledge. Between my expired EMT and my medical dispatch background I must have missed my calling  I guess. He did give us the name of a retinal surgeon to follow up with in two weeks for Vivek's ROP surgery checkup, which saves me a huge stress of finding one. He also gave us the name of a pediatric cardiologist, because it has been recommended to checkup miss Tara. Her heart murmur is still small and not causing a problem, and the hole will heal up on it's own. But just for peace of mind for the long air trip home they want to make sure all is going as well as it seems to be.

Mom got her bone graft done today by the oral surgeon, so that 6 mos from now she can return and get dental implants put in. She seems to be recovering well and not in much pain, thank goodness. I seem to be on the mend after being sick for two days, and fortunately the babies have not contracted anything. I have been terrified the entire time but there is only so much I can do to limit contact. Vinnie just brought me some Zyrtec, tissues, and mango juice though so that alone has me feeling better.

But the best news is that we are moving tomorrow to a nicer place that isn't a giant fire hazard with a killer refrigerator! So excited, though I'm not looking forward to the packing and moving part. I'll try to get some photos of our new accommodations with my iphone, which is my only way of taking photos since the camera is still missing. I'll leave you with two of my iphone photos, including a late night shot of Vivek in my lap...which is his favorite spot to nap.