Friday, August 31, 2012

Day 24: Lending a hand

Today wasn't about me, but about a new friend in the NICU. I had lunch with Petra from New York, whose son Isaac is on the CPAP and overcoming some initial difficulty possibly brought on by gestational diabetes. He is 34 weeks, but having some issues associated with more preterm babies possibly due to some belated development. I loaned her my The Premature Baby Book copy my brother loaned me by Dr. Sears, but more importantly gave her hours of advice and as much information as possible. I shared a lot of my brother and sister-in-law's hard won wisdoms and NICU tales with her, and I know it must have helped her a lot too like it did me. I hope it wasn't too overwhelming because it took me a month to learn everything I shared. Later that night I also helped walk her over to Dr. Patel's and pow-wow with her surrogate and sort out some confusion with the breast milk provisions, which fortunately got resolved.

We talked over a super yummy but pricey lunch at Madhaban Resort where they are staying. I knew it was nice over there, but had no idea. The place is like Shangri-La and is a true paradise..and I don't just say that because it stands in stark contrast to Anand. I shot a few pics of a pretty water feature in one of the bazillion gardens they have there, and a gigantic hand carved wooden statue.


I did two more bottle feeds today, one for each baby. Only some slight desats into the 70's that I could see coming on before they happened. I doubted my instincts on giving Vivek a break when I saw one coming on and he was slowing down on the bottle despite my encouragement and mimicing the turns and taps the nurses do to help finish a feed. But then Sandia told me it was okay and she was doing that very thing for Tara across from me. I need to work on my burping skills, and Vivek urped all down my arm right after I thought I was done with the burps.

Both babies hiccup a lot after eating, which I know comes with the territory for babies and will ease up with age. I love every little noise they make, but I find hiccups particularly cute.

The cardiologist came tonite that comes every 2 mos, but did not examine my babies. I asked Dr. Kothiala about it and said sonography can confirm but she sees no need to because clinically there is no indication that my babies have anything wrong with their hearts, or any holes in them. I decided to be satisfied with that.

Tara was hamming it up for the camera today instead of Vivek, and with a little patience I got my first shot of her smiling with her eyes open.


I think one of the things she is smiling about is explained in the below photos:

Thursday, August 30, 2012

Day 23: The Comeback Kid

I am over the moon today! I feel like I'm walking 10 feet above the ground. It was a spectacular day. I though maybe next week bottle feeding would start, but they started today. Vivek decided to start off the morning showing up his sister since he was upset about yesterday.

I've decided to nickname my son Hoover for the week! He bottle fed like a pro with no desats at all and stayed at almost 100% the entire time when I witnessed the nurse feeding him! Pretty amazing. He was sucking and breathing and swallowing like the little multitasker he was born to be. I was stunned and so happy I was trying not to cry. I thought it would take weeks, and I've read how there can be considerable difficultly overcoming this particular hurdle. I got to feed him myself for the first time later that night, and he did desat at the end but that probably had more to do with my ineptitude than anything else. It won't go perfectly of course, but it is a surprisingly strong start.

Words cannot describe the joy I got from feeding my tiny boy and watching him suck away, or the overwhelming sense of triumph when I got my first burp out of him. I was pleased that earlier in the day I hadn't realized his feeding had come late and my instincts that he was hungry and frustrated were right, because I'd been operating on the assumption he had just been fed but he was acting more than just hungry. It's easy to worry so much that you won't be able to sense what's going on with your babies, but every day I trust myself more.

But the kicker was earlier in the afternoon the nurse said she though Tara would need more time and wasn't quite ready to bottlefeed. She thought she would take longer. Tara must have heard that because that evening not only did she bottle feed perfectly while I fed Vivek, but I heard the nurse yell out "first prize!" and hold up her empty bottle while Vivek still had half left! The best part was after she finished the bottle and they took it out of her mouth, she was still sucking away like it was still there. It was so incredibly cute I almost overdosed on adorable, but unfortunately my camera was in the other room.

Tara exhausted from the "bottle races"
When I hold them now I'm so much more relaxed and the alarm of any desat surprises me rather that being something I expect. They typically do a very slight de-sat now and pull themselves right out,  and if any stimulation occurs it is early in the game and mild on my part and maybe not even necessary. My only worry right now is that Vivek is so alert and moving that I worry he is not sleeping enough like his sister.

I went out to lunch to celebrate at Decent Restaurant for some more bartha. It was a yummy meal, but ended on a humorous note. I ordered a mango milkshake as a little dessert treat to celebrate the morning events, and ordered it while I had them box up my leftover bartha. I waited. Then I waited some more. How long does it take to make a milkshake? Finally I called over the waiter, and it turns out they had put my milkshake in a baggie with the leftovers. Language barrier 1, Emily 0.

On the way back I did witness something disturbing. One of the stray street dogs was trapped in between the security grates of one of the businesses, and I got the sense that it was done on purpose because it was acting aggressive. Then a man came out and began beating it with a bamboo stick. It was upsetting, but I didn't stick around to see how far it went.

Tonight the family members arrived for the baby that had been on the ventilator next to my son, but is now graduated to a CPAP though he is having some seizures. The mother speaks perfect English and sounds American though she appears to be and speak Japanese. She was full of questions for me because she could tell I was the veteran around the place, so I answered as much as I could. Unfortunately her baby is full term and a lot of my recent knowledge base relates to prematurity specifically. I invited her out to lunch tomorrow after the 11am visitation, and hopefully I can help in some way. She is staying at Madhuban, so I may follow them back to their hotel so I can try the food there because it is probably the best in town.

I got my hubby's paperwork printed out for FMLA, and I'll have Dr. Kothiala sign it tomorrow since she is easier to hunt down than Dr. Patel by far! I did speak with Dr. Kothiala today for the first time about general time frame for discharge. She asked me "how soon do you want to be caregiver?" I was confused by the question, but maybe some folks are more timid than I am and want their babies to be bigger and a little more developed or feeding more than 2 hrs apart before they take them home from the NICU. I told her that while we would have apnea monitors being brought on the 7th with my mother in law, that I wanted to take them home when she felt it was safe and the risk of apnea and bradycardias have reasonably passed. However, the sooner that happens the happier I am. She said two weeks at the earliest, so around the 13-14th of September. That means about two weeks and my husband and mother will be here!!! My husband has a fire lit under him and he is rushing around getting everything done on his to do list. Between getting the car seats installed, getting extra apnea alarm batteries, adjusting the stroller to the car seats, contacting the DNA lab, buying formula, getting proof of residency documents, and packing....he has his work cut out for him!

Wednesday, August 29, 2012

Day 22: 3lb upset!

Tonight's weigh in was shocking! Miss Tara finally succeeded in besting her brother, and not only weighs 5 grams more but broke the 3lb mark first by a hair. Vivek was clearly perturbed by this news, because tonight he was so active and restless, throwing his limbs around, making faces, tossing his head back and forth, and even crying on occasion. I was in the other room at one point and realized it was actually my baby crying, because now he has the strength to cry loudly enough to where I can hear when I'm not right next to him, and he sounds more like a baby crying than an angry squirrel like before. I took many, many photos of my mighty man declaring his discontent tonight and of his general expressiveness. If he closed his eyes and rested more and burned less calories maybe he would catch back up to his sister. Sorry pics are blurry, but he wouldn't stay still tonite!

Pensive Vik

Drowsy Vik

Exasperated Vik

Surreptitious Vik

Contented Vik

Curious Vik
Annoyed Vik

Miss Tara on the other hand was as peaceful as ever. I have to say tonight holding them both I felt a sense of bonding take over, but partly it is because they seem more alert and I am more confident and less concerned about the monitors desatting so I can just focus on loving my babies. The thrilling news is that so far today I noticed no discernable difference from them being removed from caffeine! So far so good....

Smiling at winning the weight bout finally

Saving her energy for growing bigger

I'm definitely becoming a more confident mother. Miss Tara grunted while I was holding her and I thought I smelled something, and sure enough my detective skills correctly identified a full diaper for the second time. The first one was a loud bomb, so I can't take credit for my discernment on that occasion. I didn't wait for anyone to help and I transferred her back to the isollette and changed it myself. This may sound like no big deal, but at only 3lbs she is still delicate, there are wires hanging off her and she is tangled up in a blanket, and I have to get her off of my bare chest where my clothes are discombobulated and gently transition from sitting to standing with grace and ease. I've developed a method for transitioning to cradle hold first using the blanket for stability, then it is easier and safer to stand up without risking any jostling or bumping.  I was afraid to do much before this point because the nurses watch you like a hawk and don't initially trust you to do things like they would. I was partly waiting to handle my babies more independently until I watched how they did it and they were more comfortable with my handling.

Tara working something out
 I've figured out a new method to get me emotional to help me produce more milk, and so far it seems to be working. When you pump 15 min at a time for 8 times per day you can only stare at pics of your kiddos for so long trying to stir up emotion. So instead I started watching videos on YouTube of babies and then that transitioned into vids of soldiers coming home and greetings by family, children, and dogs. It does the trick! I'm happier with my production level, and if I can put out just a little more I know that the 2-3 teaspoons I can produce per pumping  right now will add up to something that helps my babies. I'm not trying to store and serve it to my babies right now because I lose so much in drops that stick to the sides of the plastic on the way to the bottle, and so focusing on when they attempt to breastfeed in a week or two may be more fruitful. It will also be easier than trying to collect all day for a tiny bit per baby that the nurses will find odd for me to push getting added to their feed of formula and be awkward with the language barrier.

Today Hitesh wasn't in, so still working on FMLA paperwork. It was a bad luck day with tuk-tuks and I must have chatted up 3 drivers for every 1 driver that knew where I wanted to go. This town is not that big, and I typically mention 3-4 nearby businesses to help them be sure the general area I want to go. Frustrating.  I also follow two more generally smart rules:

1. Always name your price first before you get in. Prevents surprises and rip-off's later.
2. If you don't have 40-70 rupees (cost of most rides) then check to make sure they have change if you have 100 bills. They pull this "no change" stuff on you sometimes, which is a load of horse hockey. If they know how to say "no change" they have change, which is typically in their front pocket or hidden in a locked compartment on the console of the tuk-tuk. Maybe if the tuk-tuk is real beat up and the driver looks like they haven't bathed in a few weeks they may have no change, but usually I think they are scamming you.

I went to Dawat again, but despite me seeing eggplant all over town they said no Baingan bartha available. That was the 1 reason I went there, so for the rest of my stay I'm abandoning Dawat and sticking with Decent Restaurant where they have it with corn in it at least.  I ordered spaghetti instead to try "Continental Fare." DO NOT FALL FOR THE SPAGHETTI!!! I've seen it all over menus around town, but it is spaghetti noodles with a super cheesy creamy sauce that is sweetened by pineapple juice. It is like a cheesy dessert thing trying to be savory. It was awful, but they love it around here. I took one bite and very politely told them I wasn't going to eat it, and to my suprise they didn't charge me for it. I felt bad. Then I walked over to Subway and got a veggie patty sandwich to go, where they gave and charged me for chips I didn't ask for, so I guess it evened out.

I met a guy from London and his twins tonight at the NICU, and I'm pretty sure his partner and mother in law. I'm pleased because I thought that Dr. Patel only helped heterosexual couples...but if my guess is correct then that isn't true. That was one serious criticism I had of Dr. Patel was that she wasn't open to homosexual couples or surrogates who were not married, but my surrogate is divorced and these two gentlemen appeared to be a couple.

But tonight ended with some special shots of me holding my son, because he was such a little bundle of energy and I realized I hadn't had many photos of me with the babies except for the first few days. I'll try to include more.

And my most favorite pic of all and my new Facebook profile pic:

Tuesday, August 28, 2012

Day 21:Company's coming!

I'm getting so excited because travel reservations have been made for my mother in law to arrive in Anand on Sept 7th!!!! I can't wait...just have to hold on until then.

Today started by my spectacular timing. I had a slow morning and slept in and arrived late, but fortunately it was right when the eye doctor was there examining my babies. He came in just to examine the both of them to establish their risk for ROP, or retinopathy of prematurity. It is an eye disease that affects almost exclusively preterm babies, though they eventually realized the risk ran higher in developed nations where more oxygen support was provided to preemies and changed protocols. In simple terms, full term babies are born with all the blood vessels they need in their eyes, but with preemies once they are born that growth can sometimes proceed abnormally. If you don't examine babies to see if the growth of vessels is abnormal, then it can affect vision and unchecked can cause blindness. Like a weed growing on a well groomed lawn, it must be stopped before it can take over. So the way to fix it is a procedure with a green laser that will cut off the blood flow to any abnormal vessel.

It has five stages, and my son almost perfect and only at stage 1. My daughter's right eye is stage 2, but her left is stage 1. She was at more risk because of her lower birthweight. He is going to return in 15 days to doublecheck their eyes, and if the growth hasn't arrested on his own we'll look into the laser procedure to make sure their vision will not be affected. I saw him take out tiny silver prongs that I knew were for keeping the eyelids open while he examined them, so as soon as he pulled out that with dilation drops and a bright light I decided to wait in the other room of the NICU. That way I wouldn't make a blubbering fool out of myself when they struggled and cried while the two other nurses held them still.

Another sign of progress today: they were taken off caffeine! This is standard for all preemies to decrease apnea, and now that it is removed I'm bracing myself to witness them desatting or having more apnea alarms. There is a chance they may not react, but we'll just have to see. If it has a strong affect, then they can continue it into week 34. But taking that step is a sign of progress, so it's exciting.

I decided to keep myself focused on the light at the end of the tunnel by buying the two baby carriers and the two baby beds I will need for them at Seven Eleven. I placed them by the door to remind me everytime I come and go that they will be filled with babies soon. The beds have mosquito nets that you can use if you want to or put underneath, along with little head pads. The carriers are rather cheap and simple but too deep for preemies according to Dr. Kothiala, so use the little head pads from the cribs and possibly other padding to raise the depth of the carriers to help make sure the babies heads don't roll foward. They have detachable plastic backs that keep them from rocking back and forth when you set them down. The carriers are just over 1100 rupees, and the baby beds are more reasonable at 395 rupees.

I couldn't bring myself to eat my leftovers from Flavours Restaurant yesterday, so I feel guilty for being wasteful but it just wasn't what I hoped it would be when I ordered it. Tonight I tried "Decent Restaurant" and promised myself I would figure out how to order soemething I really liked. I actually found bartha, though for some reason they put corn in it too. It was pretty decent. ( was obvious but I had to.) It has a nice view of the traffic from the picture windows on the second floor, and I saw a carriage being led by two white horses appear out of nowhere. Tomorrow I'll see if Dawat has baingan bartha (without corn) and see who makes the best in town.

Hitesh didn't seem to be in at Dr. Patel's, and so I didn't pursue getting printouts and signatures on my husband's FMLA paperwork today. However the hotel will print out the pages for me, so I may just have them do it for me and try to get them signed tomorrow. Scanning is another hurdle entirely to email back, but maybe Dr. Patel's office can help.

Here's hoping tomorrow is a more productive day and I don't sleep through bath time or have two short visits like I did today. I don't think either one of my babies got held for more than 45 minutes today, so tomorrow lots of cuddles are in store to make up for it. But they don't seem to be suffering for lack of cuddling, because today she is 1335 grams and he is 1345. That means they are both over 2lbs and 15 oz, so by tomorrow there is a chance they could both hit 3lbs!

Monday, August 27, 2012

Day 20: Change of heart

Today was a pleasant day. First development was that Divya left and her husband must have decided he didn't want her to stay longer to provide milk for my babies. This means my babies will be on straight formula and eventually whatever small amount of milk I can provide.  To look on the bright side this means they'll continue to grow faster. I think I've been able to fairly calculate about two cans of formula a week, but as they grow they'll go through more. Now I can better estimate how much I'll need my husband to bring with him. Tonight she weighs 1305 grams or 2lbs 14 oz, and he is 1325 grams or just shy of 2lbs 15 oz. The sucking instinct is really kicking in, especially for Miss Tara. Vivek is the one in the hot pink hat today, and she's in blue. Typical.

Last night I decided against my mixed feelings and tight budget to give a tip to Manju, and also to Nita to thank you for carrying and providing milk for my babies. It was only $100 for Manju and $50 for Nita...but it was probably the right thing to do even though I didn't feel all that enthusiastic given the issues with Manju not providing milk when she had been paid to. I've heard $200 to the surrogate is more typical. I also gave Manju a special necklace that symbolized my children that a friend had made for me that I had worn and been planning to give to her.

But today I was shocked by a sudden turn of events. Nita grabbed me in the hall as I was paying a deposit for the NICU and had someone who knew a little English say "" over and over. She kept touching my chest and also saying "saree." I could not tell what she meant but assumed she was maybe trying to get my room number for one last attempt to get more money from me, because that happens with so many it seems. I just answered no visitors at Rama and it ended with confusion on both sides. But as I went back to the NICU momentarily, she called down and explained that Manju had gifts she wanted to give me! Long story short, she met me at the Rama an hour later with Nita and gifted me a beautiful saree and an adorable dress for Tara and cute top and shorts for Vivek. She also asked that I call her when we were about to leave Anand so that she could come see the babies one last time. It seems she cares a lot more than I realized, and it is more like the happy ending I had hoped for.

I noticed two new things today. They bring in a ladder to clean the fans. Yet another surface not left untouched. I also realized that the small octagonal tupperware at each isollette are what they use for open sharps containers, and the one time I had seen sharps held underneath a trash can must have been the exception to the rule because the tupperware containers were being washed at the time. My babies haven't needed any sharps except once or twice a week for a routine blood draw so that is why I must not have noticed.

It is exciting to be making preliminary travel plans. I'm so thrilled to hear that my mother-in-law may travel to Anand and arrive on Sept 8th, and can help me with bottle feeding the babies on their last stretch in the NICU if all goes well. Then when discharge approaches my husband and mother can come together with any final supplies and all the extra hands we'll need. I can see the light at the end of the tunnel!

 Blurry Vivek opening his eyes only cause the nice nurse is trying to shake him awake for a photo op

Vivek tipping his hat and perhaps making a gang sign

Miss Tara yawning
 Tonight I tried out Flavours Restaurant behind the Subway. It was pretty good, and better than Hotel Laksh cause I ordered the exact same thing there. Slow night I guess, cause 7 waiters were standing behind me watching me eat. Wierd. I had to take a picture of the gorgeous flowers I saw blooming outside in their garden at night, which were like nothing I had ever seen before.

I think tomorrow I may go to Seven Eleven and buy the baby carriers and beds I'll need for the babies. Something to do that I might as well do keeps me focused on the end of this NICU journey. I'll also try Dawat again, which was my original plan tonight. I saw bartha on the menu and they didn't have it because it was seasonal. However I've seen my favorite eggplant around town enough that surely they'll have bartha on the menu now. If so I may have to go there daily.

I had a comment posted about how to do sterilization in the hotel room. My plan was to bring a hot plate to be used with a converter for the plug, and buy a pot and tongs in Anand at Big Bazaar. It worked just fine, but the NICU nurse Suvarna wanted me to use a steam sterilizer instead like the kind you can buy at Seven Eleven for 2500 rupees (There is one that is in the 3000 range). The thought was that some plastics get melty and may release stuff into what is put in them, but I've also heard otherwise especially if something is known to be BPA free. I bought one cause I'm not about to cause a problem with Suvarna, and got a 2nd one given to me. The microwave steam sterilizer bags are awesome, but Rama does not have a microwave and even if they did you probably couldn't use it 8-10 times per day at will.  I also inherited a kettle, which boils water so you can sterilize bottled water before mixing it with formula.

Hopefully soon I'll have tips on how to print out something, because my worry has come true and I have to try to print out my husband's FMLA paperwork, have it signed by Dr. Patel or Dr. Kothiala, and send it back to the US. I dreaded trying to solve this problem but my work was able to avoid such hassles, but my husband's wasn't so kind. I'll talk to Hitesh and see what I can do.

Sunday, August 26, 2012

Day 17-19: One month old!

I haven't posted in a while because Day 18 I had a splitting migraine and couldn't leave the hotel. Day 17 was typical, but ended on a sad note for me because my friend Lakshmi and her husband left to go home with their twins. I'm happy for them, but it will be that much lonelier here...though I did get an awesome hour cuddling their son while he slept on me. They very generously gave me their steam sanitizer so that I have a second one for bottles and nipples, as well as a kettle for sterilizing water for formula, baby clothes they bought locally, clothesline, hand sanitizer, and a few containers! I am also waiting to find out if their surrogate Divya's husband agrees for me to purchase her milk for at least another week. It is better for the babies to continue some breastmilk, and will help me not run out of formula too soon. As it is I'm realizing I may have to have my husband buy some more and bring it in my mother's suitcase. Thank goodness I got a pile of coupons from someone in the Mothers of Multiples Club back at home.

It was an awful day stuck in the hotel in bed, and I hope it is the last day in a very, very long time I go without seeing my children. But today I scored some Paracetamol, which may or may not be like Tylenol but makes the pain to go away sufficiently enough. I had a nice morning holding the babies, though I had to wait in the hall for the first time since they brought in a new baby who was more critical and on a ventilator. Dr. Kothiala and another doctor and several nurses have been giving that baby lots of attention and care, and they set up a chair by the bedside.

Today I decided to take a trip in a tuk-tuk out to the Jungle Restaurant, which is like an Indian version of the Rainforest Cafe. I've been there once before, and it has CHICKEN!!! I ordered far too much so that I could bring leftovers back to the hotel. It tasted fantastic, and I guess since I've been here two and a half weeks and it's the babies 1 month birthday that I should celebrate by taking a day long escape from vegetarianism. I even had a pina colada mocktail (Gujarat is a dry state unless you get an expensive personal permit) Between the chicken and talking to both my in-laws and my husband yesterday I'm feeling much better.

Two random things I noticed today. The tiny numbers off to the right of the pulse ox monitor appears to be the blood pressure, which I'd wondered about since I'd never seen one taken manually. I also noticed that they laundered and replaced the curtains, so truly no surface goes uncleaned around there. I might also mention that I've confirmed Sandia speaks pretty good English, and is an excellent nurse. I also like Anju a lot, who is a plus size gal like me and is super assertive and careful nurse who speaks a few essential words of English.
Yesterday they were officially tied! Tara had caught up with Vivek and they are both 1250 grams, or 2lbs 13oz.  However Vivek was having none of it and shot up today right after his feeding to 1305 grams, or 2lbs 14 oz. C'mon 3lbs!!! She gained 10 grams today and is looking at the 14oz mark but not quite there. 

Tara showing off her hiney during evening weigh in

But as I've been told, expect two steps forward one step back. Vivek tends to have a tiny bit of urp now, which he never did before when he was on straight breastmilk. It isn't an all out vomit, but I notice it. He also desats more but pulls himself out. He never used to de-sat hardly at all. She was having an awesome few days, but after putting him back in the crib early from kangaroo care due to a de-sat, we repositioned her to cradle hold then shoulder hold because of several. None were really bad bradys, but still frustrating. I guess their little bodies can't do everything at once when they are growing so much.  But again, must keep perspective. My babies may be the smallest, but judging by other babies needs for IV's or oxygen support alone they are doing among the best. It's just hard not to want so badly to see everything only getting better all the time I guess.

Regardless of any apparent setbacks, my mind keeps drifting to the day they are discharged and my husband and mother are here. It is so hard to wait, but when I start to calculate how many days of diapers and formula I have left and how many days until they reach 1800-2000 grams for possible discharge until then I get overwhelmed trying to predict the future. When it happens it happens and I'm once again not in control here.

Thursday, August 23, 2012

Day 15/16

Yesterday was a lazy day...hence no posting. I thought about doing laundry a lot. Didn't actually do it until today. Thought about going out to lunch. Ordered pizza instead.  Took a nap, though the banging from construction nearby put a dent in that plan. I ended that evening by going to the restaurant downstairs finally to try Gujarati Thali meal for the first time at Vangill. I mostly went cause it was close. It was okay, but not my favorite. They give you a giant stainless steel platter filled with small silver bowls then just give you as much as you want of about a dozen things. Think a Brazilian churrascaria without the meat.

However yesterday was still awesome, because I dared to do kangaroo care with Tara for the first time in about a week. I'd asked not to because she desatted so horribly for so long the last two times I did. However last night she did an hour and a half on my chest with only 15 minutes of desatting that required mild stimulation. I was ecstatic!

I had worried myself sick yesterday because Vivek had a bradycardia and vomited, and two doctors and several nurses had what seemed like a concerning conversation around him for 10 minutes.  I'd never seen him brady, so it scared me a lot. I checked this morning with Dr. Kothiala and she assured me that the reason they backed off on his feeds and switched back to breastmilk yesterday was because he only vomited the one time, and they are re-introducing formula today. I told her that I do think they are too quick to dismiss my reports of bradycardia as a problem with the sensor in my opinion, but she was certain that if the nurse there at the time did not report it to her then her physical check of him at the time would have confirmed itwas a false alarm. A large part of my perception is that I am scared of NEC and every little negative thing I see seems ominious and my fear is giving me an overly active imagination. But my friend Lakshmi today made me laugh when she echoed that sentiment and told me that when Dr. Kothiala has her stethoscope on one baby's chest a few seconds longer she is already thinking something must be wrong and there must be a reason. I guess as a parent you always find something to worry about with your children.

Today was much more productive. Two sessions of kangaroo care with both babies, and Tara did even better and tended to stay above 97% oxygenation...even better than Vivek. She is definitely gaining weight and has chub in her cheeks that wasn't there before and makes her look even more adorable. She is more alert when feeding time rolls around and makes more vigorous sucking and smacking noises with her mouth. That instinct is kicking in for them both, and I found out once they weigh 1500 grams they will start bottle/breast feeding attempts. I showed them my Lact-Aid SNS sytem today, and it turns out they were familiar with it already because of a previous patient. They found it difficult, but were amenable to trying it.

Vivek was a naughty boy today and when he was un-diapered for his nightly weigh-in he peed all over the floor and may have gotten a drop or two on the nurse!


I re-fired Manju, and this time I meant it. Last time Manju was fired, she wound up getting a 2nd chance because it turned out enough surrogates were not available to provide milk. She cleaned up her act for a few days, but then got lazy again and was barely pumping and putting more pressure on Nita to provide the milk. Nita is not happy, and I plan on giving her a big tip tomorrow once Manju is really gone. They had been asking about payment, so today I sorted out payment and paid in full until Monday for the both of them for the milk. It was 430 rupees for 31 days for Nita, and free the first 15 days for Manju but 430 every day after that. They were sharing a room so that may be why it was less than I anticipated. All in all for 31 days I paid 20,210 rupees for two surrogates. It does annoy me that my friend Lakshmi is only paying one surrogate who is a super milk-producer and has enough for two almost full term babies!

However afterwards a clearly upset Nita brings milk that Manju should have brought, and declares that once she had found out I'd paid she decided to take a little vacation to Ahmedabad and not pump today. That was the last straw. Since they are partly on formula this week we can get by with Nita's milk only, so I went to Dr. Patel's office and very angrily demanded a refund for today and every day after for Manju. She needs to resign the contract and go, but any bills come in for any hospital stay or milk providing from her and I'm not paying. They could tell I was serious, and they paid me back immediately. She will not have a pleasant surprise when she comes back from what I guess she thought was a paid vacation.

I treated myself to a nice dinner out at the Noon to Night restaurant on the terrace overlooking the city. It was a nice end to a long day, though finding a tuk-tuk after dark in the rain proved slightly challenging. The French onion soup I ordered had too much pepper, but at least they didn't totally ruin it. I almost ordered the enchiladas, but I knew it was too good to be true so I decided to avoid the disappointment. My quest for grilled vegetables was a bust because the tandoori veg platter had odd patties and paneer instead. I ordered a mango lassi with ice cream like I've had elsewhere, but the waiter told me that is not good and tried to talk me into a simple milkshake. I told him it is too good, and he laughed and brought me one. It was delicious. I can't wait to get to Delhi where the food is awesome. I hate to complain about the food so much, but honestly it is the worst thing about my existence here aside form hours in the plastic torture chair.

I did find out from my father in law and it was confirmed by my friend who lives in India that people didn't get involved  in the dead or dying man in the tuk-tuk for two reasons:
1. My initial thought was correct....they thing when someone appears to be dead it is a done deal and rescuscitation is not something they see as the right or necessary thing to do.
2. No one tends to get involved here because any death turns into a police investigation, and you may suffer hours of interrogation because they will think it could be a murder and you are involved somehow. It only goes to show how corrupt and inept the police are here, but unfortunately they have enforcement power. I'd like to understand more about how this is the case, because given my background I find it more than just a little bit disturbing.
But to end on a more positive note, here are some videos of very sleepy babies while their Mommy discusses Vik's indiscretion with them both.

Tuesday, August 21, 2012

Day 14: The many faces of Vivek and Tara

I went nuts with the camera this morning at bathtime. They are so alert and make so many faces and work the camera. They nurses were so great about it even though I was in the way. Vivek doesn't seem to enjoy any part of bath time and protests as loudly as his little lungs let him. His tiny frown is so heartbreaking. Tara on the other hand dislikes the wiping down part of the bath and squeaks in protest, but when the rubbing them down in oil part comes she settles right down and seems to enjoy it. So without further ado.... For some reason the pics stretch out a tad.

Miss Tara's bathtime:


Miss Tara post-bath:

Mister Vivek's bathtime: (You can tell he is less of a fan)

Mister Vivek post-bath:

Tara has a noisy new nieghbor. The NICU was at 7 but a set of twins and a singleton arrived so we are back at 10. Not a whole lot else exciting today after bathtime. I bought a steam sterilizer at Seven Eleven and was overcharged, but had no choice since my small one I brought (Baby Bullet Turbo Steamer) busted after the first use and Suvarna told me they do not want me boiling stuff for 10 min to sterilize it. So now I'm handwashing and then just steaming. I plan on taking pics to show her my sterilizing procedure so she'll believe me because she is so cautious. I appreciate how protective and careful she is, but no way am I bringing 18 pieces to sterilize every few hours when I still haven't gotten one piece back from 2 days ago.

I resolved my account with Dr. Patel today after further discussion with Hitesh. By some miracle I caught him with Dr. Patel and her assistant all in his office. It was about what I expected and planned for, which was $2000 extra to the surrogate for the 25% twin fee, plus a $1000 procedural charge (see below). I did debate the $2000 emergency delivery charge, because if there is no emergency delivery it is supposed to be 50% refunded. Even though it was delivered early and was an emergency in a sense, it was still natural childbirth and not Cesaerean section so they agreed to take off the $1000.

Some things I learned to help out other folks out there:

1.  If you have twins they generally do a cervical circlage procedure, and that is a $1000 charge. We were not informed about this but fortunately I planned for a bit of wiggle room in the budget.
2. We had just over $2000 in hospital stay fees for when she was admitted for the fetal reduction procedures since all 5 embryos implanted. We had to do reduction twice since one embryo didn't respond the first time. We were not informed about this, but I think it evened out because I'm recalling the fee schedule may have some hospital charges from when they are normally admitted before delivery but ours never had a chance to be. You may want to doublecheck about hospital fees anytime your surrogate is admitted or has a procedure.

Other practical information for readers coming to Anand: There are English channels here. I'm not sure if they are the same at every hotel, but at the Rama Residency here is my list...which may not be comprehensive.

Chan 45: Movies Now--almost all blockbuster movies
Chan 46:  AXN- a mix of shows including several game shows
Chan 51: Star Movies
Chan 60: ZStudio-sometimes movies, sometimes TV shows...including some Comedy Channel shows
Chan 70: Mix of TV shows
Chan 73: Mix of TV shows, including Dexter and the Simpsons.! Indians also seem to love Austrailian competition cooking shows aired constantly on this channel.
Chan 77: Movies

That is at least 7 English channels!!! Netflix and Hulu Plus are not allowed in India due to some crud about streaming rights. Count your blessings folks. I am mostly sick of the same commercials I could recite in Hindi even though I'm not entirely sure what they are about. Usually cell phones. It is all about how cool your cell phone is here. I also find it humorous that many English shows are subtitled in English for some reason. But the funny part is that the person says "shit" but the subtitle says "crap." They JUST said it, so why bother changing the subtitle???

I did end the day on a sad note. As I left the NICU tonight my way was blocked by a tuk-tuk, which was not normal because mainly you see only motorcycles try to go through the narrow passageway by the stairwell entrance.  I noticed a lot of men crowded around it. As I squeezed by on the side you can't exit from I saw what was going on.

There was a young woman crying looking very distressed, holding onto an elderly man who was halfway in the seat but slumped over and unconscious and she was trying to hold him halfway up. I knew it was serious the instant I saw it. Everyone was just standing around watching, looking far too calm for what the situation appeared to be to me. However CPR is hardly something that is really known well in this part of the world. I have pretty extensive medical knowledge and training for a layperson, and my instinct wanted me to go through the steps I talk people through at work almost every day at 911. The patient was in the worst possible position for his airway, and showed no signs of obvious death from what I could see. They had a wheelchair but none of the men was moving a muscle to lift the man in it and take him to the elevator into the ICU.

Hee was surrounded by about a dozen men who were trying to take control of the situation by doing absolutely nothing but spectating while someone slowly walked upstairs to get a doctor to come down from Dr. Kothiala's hospital. As a foreign woman, I knew there was no way I could jump in there and take charge of the situation without resistance. Plus, I didn't know the full story of what happened that could signify obvious death, nor a way to find out. I also had no CPR mask and the chance of a transmittable disease is far more likely here. So instead I stood over by the wall a few yards away and waited, hoping a doctor arrived soon.

After a minute a doctor came down and put his stethoscope to the man's chest, then I saw him pull it away and shake his head no. Very sad. I left to give them their privacy. I wonder if he was that woman's father. I wonder why he arrived in a tuk tuk instead of the ambulance that arrives there several times a day. I wonder if he was already dead when they got him in the tuk tuk, or if he was unconscious and she had help getting him in it. I wonder how you call for an ambulance when there is no emergency number here, or if you can't pay they won't pick you up. I wonder how many people die because there is nobody who can give medical instructions over the phone. So very sad. I walked away and said a small prayer for her, but also grateful I live in a country with the infrastructure to support emergency services.

Review of Dr. Kothiala's NICU

I posted what is below in the Dr. Patels surrogacy forum, but decided to repost it here. I started as one paragraph, then grew into a small novel. I didn't realize I had so much to say, but hopefully this encompasses a lot of info that someone who winds up in this boat can use in the future.

I would like to leave some detailed comments about Dr. Kothiala's NICU based on my experience. So far I have been here 2 weeks, and will easily do another month in the NICU. My twins boy and girl were born at 27 weeks and are doing quite well. My comments are mostly positive, some negative. I have not seen or experienced anything that would cause me to not recommend her NICU to others. However, the fact that my babies are doing well allows me to be more relaxed and not have as much reason to question. Others have had babies who were less stable with more severe problems, and had more to second guess and may have found more differences with advanced protocols in more developed countries. My babies are also not on any medications other than vitamin drops and the standard caffeine to stimulate respiration, so I don't have reason to question medication management. I have heard that Dr. Kothiala was amenable to medication modification when a reasonable arguement was presented. I find Dr. Kothiala to be a very approachable and kind workaholic, who is here at 8am and often 8pm and told me she has nothing else she does. Her husband Ajay Kothiala is a co-founding doctor here, and they run this hospital together with supporting physicians. She is experienced and has gray hair, and she trained Dr. Biren. She is proud of the fact that she was one of the first to do a particular type of surfactant therapy that is now becoming more standard.

I spend anywhere from 4-6 hours a day in the NICU visiting and doing kangaroo care with my two babies, who were stable enough for me to do it with on the first day I arrived. Unlike folks with bigger babies who are bottle/breast feeding and not doing kangaroo care who are told when to come and go typically around feeding time, I come and go as I please and spend hours here. They never know when I'm going to pop in and I've been here from 8am anytime until 9pm. They know I will be a fixture here for a while, so it seems the rules don't apply as much to me regarding visitation.

Regarding hygeine and cleanliness, a lot has been said about Dr. Patel and Dr. Kothiala's facilities. My own doctor in the states has said that what is probably best and reasonable is a halfway point between how things are here and how things are there, because he believes the US goes overboard. I tend to agree, though the NICU is a special circumstance. It seems that a lot of folks have an impression about things being dirty, but sometimes that opinion is superficial. I've paid close attention to hygeine and sanitation in the NICU because of what I've heard and because it is so important. There isn't a new coat of paint on the walls and the equipment looks older or mismatched or has a stain, but from what I've seen I would eat off of it more readily than I would the dishes at my hotel. I think that you need to look beyond the surface to form a reasoned opinion on this matter.

First off, there is a woman 24-7 who is not a nurse and her sole job is cleaning. She is easy to recognize because she never wears a gown and never touches a baby. She stays busy doing all the laundry, sanitizing all the pump parts and bottles and all equipment, washing down all surfaces, and hand mopping the floors several times a day. She is thorough, and gets the hard to reach spots including the tops over your head where you can't see the dust. She changes all the bedding and clothes and blankets every morning when the babies are bathed from head to toe around 8:45. The babies get a fresh orogastric gavage tube for feeding every morning. They do disinfect by wiping down all parts of the isollette, though they don't wipe down unoccupied ones as much.

You leave your shoes at the door, because like anyone who has been to dusty Anand knows, there is good reason why the feet are considered dirty. THey have shared plastic flip flops that are cleaned daily you can use, but I always choose to go barefoot. I did get in trouble once during kangaroo care and Dr. Kothiala scolded me because my legs were crossed and my hand was inches away from touching my foot.

They do use shared sterilized gowns and hats, though on occasion I will see a nurse without one touch the baby with hands only. The visitors use them too if they are touching and definitely if holding a baby, unless you are doing kangaroo care. A study in the US showed that gowns do not significantly reduce the spread of infection, but that study was in the US and India could be different.

You are told to wash your hands and then use a sanitizer in a pump located in several convenient places.
They re-sanitize before touching a different baby, if 10-15 min elapse between handling, or they handle equipment between touching babies. I have seen the cleaning gal cough once without covering her mouth, but then again I sneezed on my son's head in kangaroo care cause it caught me off guard and I didn't have a close hand free.

They are careful about illness. I don't have allergies at home, but perhaps in reaction to the pollution and dust, here I do. I also get a cough the first few days until my throat adjusts to all the fans blowing to keep things cool. I was questioned several times by nurses and two doctors, and had to repeatedly assure them I was fine for them to let me stay in NICU. They do have fans blowing in the NICU on occasion to keep things cool, but no AC. I haven't been more that slightly hot and sweaty, but the weather is warming up so the jury is still out on that comfort point.

Regarding visitors, I'm not sure what people have an issue with. All I've seen are parents and for shorter periods of time grandparents allowed in. The rest are all staff, or surrogates dropping off breastmilk handing it off to staff. Non-NICU employees open the door and stand in the doorway to deliver their message and equipment. Any others, including children, have been allowed to look in a window that usually they leave the drapes closed on. My friend Lakshmi and her husband were allowed in, but they mentioned my name specifically and that I requested a photo of my babies because I was going nuts because it was a week before I could travel. Plus they were having twins in a few days and would be in the NICU and deserved a tour. It does get crowded around afternoon feeding time, but it is usually all the parents coming in to practice their bottle feeding skills to prep for discharge.

They have the cleaning gal do all the sterilization. The surrogates turn in the entire breast pump when they bring their milk, so all sterilization is controlled there. They use hand pumps that are sterilized with each use, though I've seen a double electric pump on a shelf. Since I am inducing lactation, I was questioned extensively about medications and sterilization by the nurse Suvarna. She corrected me on one of the steps of my sterilization procedures at my hotel, and only with much convincing did she agree to let me sterilize at the hotel instead of bringing everything there every few hours to sterilize.

The NICU is small, but I see that as an advantage to care level because it is harder to miss stuff going on with the babies and less to keep sterile. There is always someone walking by the isollettes for something, so they rely on eyes and not as much on alarms and machines. I wish it didn't get so crowded during 11am feeding time when we had four sets of twins in there and were filled to capacity with 12 babies, but you can't have everything.

I don't like that you have to walk through a crowded waiting room and past the ICU and hospital rooms to get to the end of the hall where the NICU is located. I also don't like that there isn't a fancy air purification system that is probably not feasible in this part of the world. Instead they do have two windows that they tend to open to outside air in good weather. I've only seen one fly and one ant in two weeks, but one night after the rains they did pull out a bug zapper and I heard it go off a few times.

Speaking of rain, during the end of the rainy season the power did go off twice in an hour. There was no reaction, because everything important was on an uninterruptible power system. They did get up to reset machines when the power came back on though.

I don't like how loud the nurses are when they talk, but I did read something today about how the noise in the womb is the decibel of a vaccuum cleaner. This is supposedly why babies like hair dryers and car rides and vaccuum noises. The babies seem to sleep through it okay, but it still bothers me. The beeps are easier to tune out after a while than the voices.

The nurses do not behave with as much decorum and professionalism as I would like, but they are more relaxed around me because I'm always there and try to be a fly on the wall and stay out of their way. They still do their jobs, but they do gossip and tease and joke (I can tell by the voice tone and body language) when there isn't something to do. 50-75% of the time though there is something to do so someone is usually walking around to notice anything wrong with the babies. The nurses tend to hang out at the juncture where the two small rooms adjoin near the main phone line, and it does give them a better view of all the babies.

I have had two incidents with them goofing off that bothered me, but I handled it myself and it was rectified without me having to say something to Dr. Kothiala. I've been told some folks offer bribes and not just tips at the end that may help this some, but for now I've elected not to offer money until discharge. This seems standard, but may get them in trouble also...not too sure on that topic.

They do seem to change diapers frequently based on the babies cues and at certain times, and they often check the diapers when doing routine care since the littler preemies can't cry to signal discomfort as much. They always reposition the babies when they get discombobulated enough in the crib to mash their faces against the side or get something covering the mouth or nose, even though the monitors may still be stable.
Monitoring. A lot to say on this topic. First of all the babies will have monitors attached by two cords to measure three things. The first cord to the foot (wrapped around) is the pulse-ox monitor that measures pulse per minute and the oxygenation by percentage. Normal is 80-100%, but you really want to stay in the 90's and it alarms at 85% after a few seconds. The pulse should be (from my observations on my babies only) 110-145 or so. The constant beeping you hear is the heart rate, and the tone goes high for high heart rate and deepens for low heart rate. After a few days I subconsciously became aware of the beeping tone and would hear it deepen only to look over seconds before it alarms. This is one reason the nurses don't jump at alarms, because they were expecting it. More on that in a minute.

The second blue cord goes from the lower left of their chest (taped on) to an apnea monitor that sounds an alarm if they stop breathing for a certain period of time.

I think what will send the nurses running is a "trifecta" where the apnea monitor goes off along with the pulse-ox monitor signifying low oxygenation as well as bradycardia tones(low heart rate). A local baby that was born unhealthy and on a ventilator did die while was at NICU, and they ran to the other room even though I heard no alarms, so something else was noticed or I was in my own world.

It's hard to say how well they monitor and react to the monitor alarms, and some nurses differ slightly. Keep in mind my opinion is on my babies who aren't that bad off, and I haven't had any babies with more severe dips than mine to observe.

Everyone monitors them if they are a nurse, but sometimes it is the closer person or a nurse who is more of the leader who checks it first. I can tell they respond faster to an apnea alarm.

I think for my baby girl who "de-sats" to the 70th percentile 2-4 times per hour after feeding due to reflux issues, they base part of their reaction on knowing her pattern. She typically pulls herself out of it without stimulation by the nurses, so I think they wait a bit to see if the alarm goes off by itself. However they do listen for the low tone of a bradycardia pulse with it. If it keeps going off and on they come and check her positioning to make sure her airway is good and make sure the monitor is on her foot solidly. They also look to see if the baby is cyanotic (blue) or moving and making noise. Motion will cause it to dip a bit or false alarm, and the foot monitors do come loose. I realized that babies who are Indian like mine (egg donor) are harder to tell when they get cyanotic, so they check the palms and bottoms of the feet where they are paler to check coloration.

Regarding monitoring and prompt responses to alarms, it is hard to judge fairly as a parent. At first I thought they were too slow and too quick to assume it was the foot monitor acting up. But in truth I don't think I'd be satisfied unless someone were sitting in a chair watching it 24-7. Keep in mind that my brother ironically had twins 5 months ago born at 28 weeks and prepped me extensively for the NICU experience, although his was in a US NICU. So when my baby girl desats into the 70's I am tense. But the first two times it happened, I was freaking out inside trying to appear calm. I knew it was 100% normal for her stage of development but it scared the ever living crap out of me. When she bradied (bradycardia-heart slowing down) to the 50's along with desatting the first few times I cried. Seeing her needing to be stimulated out of it the first two times was excruciating. I work for law enforcement where you are used to being tough and you never cry, and I 100% expected this to happen but none of that made it any easier to take. 

One clear difference from my brother's US experience to mine is that here they don't chart all the A's and B's (apneas and bradycardias). I asked Dr. Kothiala and she said only if it is pretty bad do they chart it. Overall charting is morw minimal here, and because they are smaller with a low number of staff compared to a large US NICU, they rely on verbal communication and passing on general observations. That is one way in which small size may be an advantage. I also think that with fancier newer machines in the US that they probably take closer recordings, and it records and probably prints out all the readings for the chart.

My brother's babies did seem to have a temperature monitor attached to them as well as an automatic blood pressure cuff I think. They do chart a BP at regular intervals on the chart, but do it manually here. They maintain temp here by using the warmers that are adjustable, and there is a temp sensor located close to the baby but not on the actual baby so it is harder to tell. They keep them clothed with hats and blankets over them, though the babies with jaundice under bili-lights have no shirts or blankets so their skin can recieve the healing light. When I changed my daughter's diaper I was given a 2 min time limit so she didn't get cold and watched closely. They occasionally touch the extremities to see if they feel cold. One of the reasons they don't swaddle them here or allow for clothing beyond the accessible tank shirts is so they can monitor skin tone and access babies better more quickly, per Dr. Kothiala.

Regarding brain bleeds, which are a risk with preemies, they do not have an MRI machine. I would be surprised if they had one anywhere in the city and I imagine you'd have to go to Ahmedabad or Mumbai. However they did a scan after my babies were born (CT?) that she showed me that was clear. She said they rescan after four weeks, or sooner if there are signs of a bleed.

Dr.  Kothiala takes a minimally invasive approach, so she avoids IV's unless they are absolutely necessary and prefers oral suspensions whenever possible to deliver meds. She does routine blood testing, but not daily or more than necessary.

THey are on a 2 hour feeding schedule starting at 7am, though once babies are discharged it is more adjustable. In NICU they are trying to get them to put on weight to be discharged, so the schedule is more rigorous. I've never seen them feed later than 15 min behind schedule. It is funny because there is no alarm signaling them it is feeding time because they are so used to it and the babies let them know because they get fussy and restless. My son starts smacking his tiny lips and sucking on air a full 30 min before feeding time!
Regarding oxygen support, my general impression is that they are less likely to use it than in the states. I'm not certain of that, but one other person has echoed that sentiment. It seems the philosophy is to help them develop strong lungs and breathing skills, even though it may result in more alarming. My babies were on CPAP then oxygen by nasal cannula only 3 days. I've seen bigger babies here on cannula longer, and there are sterilized containers of sterile water keeping it humid. They use the ventilator if absolutely necessary, but Dr. Kothiala is well aware it can be problematic and damaging if prolonged.

My last comment is on the chairs. They only have those awful stackable plastic lawn chairs that are so popular here, some without arms some with.  I'm convinced the person who invented them was an expert at torture and interrogation and designed them specifically to systematically cut off your circulation in key areas. Sometimes after holding my baby motionless for an hour and a half my hand will be swollen and I lose sensation in my feet. I saw a picture of my brother in the NICU doing kangaroo care and he was in a plush chair with a slight recline with a head rest AND a foot rest. I was seething with jealousy. Much easier to stay motionless for 2 hours in one of those puppies. Right now those chairs are the bane of my existence and the #1 reason I don't spend more time in the NICU than I do already.

Anyhoo, I hope this review of my overall experience so far is helpful to someone. I'm a person who likes to be in control and when I have no idea what to expect I get pretty anxious, so hopefully this prepares someone a little better than I was. I hope that very few of you wind up in this exclusive club of NICU vets, though many of you with twins will be in the "sub-club" with your giant short-timer babies who are gone after a week. (If I sound jealous, it's cause I am!) Email me if you have any questions and I'll answer what I can, and I appreciate any feedback or correction if your experience was different than mine.