Worth

In these past two weeks since she's been home, I come to the opinion that having twins with one requiring medical care must be like having triplets. It's not that the routine care Tara requires is terribly complicated (though recognizing signs/symptoms of problems and discussing modifications to care with her doctors is), but that it is time intensive. I've got them sleeping through the night. I've got them sleeping at the same times during the day for the most part. Finally having continuity of care has her health as stable as it has ever been. But it doesn't matter. Because every 1-2 hours something has to get done except for one 4 hour gap from 4am-8am. Here is a short list:

1. 6 different medications delivered on a  strict schedule
2. Breathing treatments every 6 hours
3. Chest physical therapy every 6 hours
4. 2-3 bottle feeds per day for 15 minutes, requiring the feeding pump to be turned off for an hour beforehand. Her oral feeds will be upped gradually in frequency and duration to get her to 100% oral feeds, hopefully before she starts solids in 4 1/2 months.This will make things much more time intensive.
5. 2-3 doctor appointments or lab tests per week
6. About 2-3 calls about doctor appointments or from doctor's offices, nurses, case managers, social workers, or insurance compaly representatives per day
7. Rinse and replace the formula in the feeding bag/pump every 4 hours
8. Replace the feeding bag in the pump daily.
9. Replace the BARD button tube weekly
10. Wound care at least two times per day.
11. Tummy time for both babies for 15 minutes daily
12. Baths for both babies every other day
13. Sterilize bottles and pacifiers daily.
14. Mix 24 cal formula pitcher daily
15. 3 medications daily for my son

In between all that you have to cram in around 14 diaper changes per day and then 7 bottle feeds for my son. Then throw in all their laundry. When they are awake you need to be awake and playing with them and stimulating their development, especially given their prematurity and risk for delays. Then sometimes they cry for gas pains or no reason at all and you need to hold and soothe them. She has a big temper and it can take a half hour to get her calmed down. Oh yeah...and I have to eat and sleep occasionally.

If it was just two healthy twins with the requisite bottles and diapers our original plan would have worked. If our insurance had approved private duty nursing (which babies with less medical need get approved all the time I'm told by our Home Health Nurse), our plan would work. (We are now attempting to get it covered through my husband's insurance or other social service programs, but that will take time and there are wait lists.) If I made a bunch more money than the skilled assistive care she would require per month, it would work. If I didn't have debt to pay off from surrogacy, infertility, and previous medical expenses that insurance didn't cover and a car that needs replacing next year, it would have worked.

But as it is, there is just no way physically or financially I can continue to work full time and give Tara the care she needs and get enough sleep...even with all the help my in-laws have given us and having refinanced our house on Monday for substantial monthly savings. I'm severely sleep deprived even while I've taken two weeks off of work and had our in laws come in and help! My husband's job evaluates him solely on his speed in a call center environment, and him going it alone while I work at night has him so tired that it slows him down at work and can put his job under threat if it continues.

Fortunately I have a retirement account that I can use a portion of to resolve financial concerns we have and to make it possible for me to take some time off to care for her. With careful investment and savings moving forward in our future I can restore and double that account in half the time. In a short time we'll be in a much better situation for me to return to work at either my old job or a new one.  Not only will Tara's medical regimen reduce dramatically and some of her health care issues improve, but we will  then be able to afford skilled care even if we can't get coverage for private duty nursing. In general, a lot of things get easier for babies the older they get, and Tara will outgrow her need for the G-tube and meds and breathing treatments, and eventually her lung disease entirely.

As much as I love my current workplace, I am at peace and much more relaxed since I've made this decision because I know it is the right one for my family. Having a family means making some hard decisions, but somehow it is so much easier to make them than before.

There were times in my darkest days I wondered if maybe the pain of infertilty was too much of my own making. That perhaps finally having children wouldn't actually offer me the glorious bounty of happiness that I had imagined and mourned for daily.

Nope. It is even better than I ever imagined. Even when I haven't showered or shaved and am wearing the same formula covered clothes for a number of days I'm not even sure of, and am so tired the world is blurry around the edges.

Notice that I'm not saying "those eight years of infertility were all worth it." I won't minimize or rewrite the past. The present does not erase it. I won't say "I wouldn't change a thing" because it brought me to where I am now. Call me cynical, but I don't think those eight years are somehow worthwhile now because it makes me appreciate my babies more, I'm a stronger person, it has taught me so many life lessons, or it is the cause to my current effect. Sorry, but I'd still rather not have gone through it and popped out a these kids on my own years ago and my biggest problem be my stretch marks and what to cook for dinner. On the same note despite how extraordinary the entire experience has all been, I'd still rather my babies have been born full term and healthy right here in the Texas and not have had to go fight their way through 3 NICU's in 5 months in 2 countries.

It is really hard, and my life sure seems overwhelming when I look at it as written above.

But after a few days of adjustment to our whirlwind routine, it doesn't really feel that way most of the time.  I may have a bad hour or two or even a bad day, but the thing is....every time I reach down to pick them up they smile at me. They even laugh now too! That moment in time makes me happier than anything else has ever made me. And it happens dozens of times a day. I've come to the realization that it's not about making the bad stuff "worth it." It's just that there is so much amazing, fun, beautiful, happy, and incredibly good stuff.

So if anyone out there reading this is wondering if it will all be "worth it" one day when it is all "over," I can't promise that. The best laid plans... But I can assure you, your child will make you more happy than you ever dared to dream of and it pervades every part of you. It's the biggest and best kind of love there is. The time you spent worrying about this child feeling like it was less yours because of an egg/sperm donor, adoption, being an older child, or growing in someone else's belly will seem wasted. So if you are out there struggling with the decisons surrounding making your dream of parenthood come true and trying to make the optimum choice and control every aspect of the outcome like I did, my only advice is  that in the end the "when" will matter so much more than the "how."

Tara and Mommy in the same dress circa 1977!

And the NICU roller coaster hits a a new low...

So Sunday night I go in for a bottle feed after seeing two separate wheezing/aborted bottle feeds/crying episodes that had caused some of my anxiety in my previous post. I had a message on my phone that earlier in the day her airway had seemed "more reactive" and they were considering putting her back on steriods. When I walk in the room I see she is back on oxygen. And not the low flow kind either.

I lost it. It had been building for a few days, and I could no longer clamp it down. The nurse must have thought I was usually like this. It embarasses me to get so emotional, but I guess I should be proud that I kept it together for over a month of this mess. I almost had to call my work and ask for more time to come back from my lunch break because I couldn't pull it together.

So the next day I am armed with a dozen questions about RAD that all boil down to "what the hell is happening to my daughter!?"  I wait at the hospital 2 1/2 hrs in the morning in vain, because the doctor was too busy to talk to me. I go home to relieve my husband so he can go to work, and I'm unable to sleep. I exhaust my poor mother on the phone pouring out my frustration and fears.

But then the doctor calls me and has exciting news. He thinks she may not have RAD at all and have a "floppy" upper airway that is the cause. It could have gotten irritated by us upping her bottle feeds, so tomorrow he is having an ENT (ear/nose/throat) doctor do a bronchoscopy to examine her upper airway for any problems. He also thinks her reaction to her meds is not as typical as it should be if she really has RAD.

I realize that if she has one of these problems it could me an a G-tube, but at this point I'll take it if it means she can breathe better without all this reactive airway mess. I'm actually excited that something may be wrong with her upper airway, believe it or not. But the ramifications were less scary by far, so I had my fingers crossed for the next morning. I did six hours of research and was armed with the following list of questions, of which I was well educated on each and ready to expand upon if needed:

1. Did the ENT find trachomalacia/laryngeomalacia/pharyngomalacia or subglottic stenosis?

2. Would you classify it as mild, moderate, or severe?

3.  Is it congenital due to her prematurity, or aquired from the pneumonia/RAD? Perhaps a mix of both?

4. What would be the most conservative to the most aggressive treatments, and what are you recommending? (I had extensively researched each of the following treatment options)

• Growth/time to allow her to grow out of it. That would mean a G-tube.
• Aortoplexy. If you do an aortoplexy do you also do a concomitant intraoperative bronchoscopy to verify placement?
• Stents: If I am understanding correctly this is a temporary measure for a few weeks and not a viable solution.
• Slide tracheoplasty. Probably a more extreme option not necessary for her issue.
• Supraglottoplasty

So I am ready the next morning. The doctor finally calls, and to my dismay tells me the ENT found nothing. Dr. Treen wants to do a G-tube with a Nissen fundoplication. http://www.pedsurgwmi.com/resources/8704-Nissen-feeding-tube-bro.pdf

My heart sinks, but I had a list of questions for that possibility too, because while I am onboard the G-tube bandwagon I have reservations about the Nissen.

1. If she is likely to outgrow reflux, isn't a Nissen a permanent solution to a temporary problem? I don't see that a reversal/take down procedure is ever done, and I don't understand how babies can "outgrow" and the Nissen can "relax" physiologically. I didn't really get this one answered directly because she expanded upon the answer and I got overwhelmed.
2. Aren't fundos done in the first year often redone due to failures? Yes, but does it matter if she really needs it?
3. Has she seen a GI specialist to confirm the necessity of this and rule out other issues?   What about a PH or impedence probe study, upper GI series, manometry to rule out motility issues? She answered no, that she sees no need to based on what we already know.
4. Do you do one without the other often? (In the past they were always done together, but new research has them being done less and less in conjuction and dependent on the individual child's issues.) Dr. Treen confirmed she has done her research by telling me she does them together less and less, but is certain that in Tara's case she needs both.

I thought I was prepared, but the doctor's answers made my head swim a bit and I was more than a little upset that my daughter may now need a major surgery. She was so certain that Tara needed it. But her explanation left me a little confused, and it wasn't until hours of thinking and research later I could understand why and how to rephrase my questioning. It seemed that folks who have Nissen's done only sing the praises when their kids had severe reflux with the typical vomiting symptoms that it cured. And they typically get them at 1-2 years old after other medical management has been tried and failed. My daughter doesn't have the typical GERD symptoms, but I suspect and have not had the doctors confirm that her respiratory issues are very GERD related. If so then I am on the Nissen bandwagon. But if not, it seems like maybe too major of a step based on a possibility and not an inevitability. The diagram below trees the expression of GERD, and I can checkoff next to nothing on the left side but at least 6 on the right side in my amateur assessment.

The doctor seemed to be saying that because a G-tube increases the risk of reflux due to the balloon decreasing stomach size and the swallow study showed that thin liquids (i.e. formula in her g-tube diluted by gastric juices then refluxed) cause her to aspirate, then we should do a Nissen  fundo to prevent that from being a concern. But in my mind if she is not currently having silent aspirations and severe reflux issues, it may be a little too prophyalactic.  But then again is the risk of a major aspiration and repeat hospitalizations for aspiration pneumonia to high of a penalty for failure in this decision?

So here is my new list of questions. I am trying to not be "that mother" that asks idiotic questions based off Google and doesn't listen to an experienced and well educated doctor. I just want to make an informed decision and understand it well, and Dr. Treen seems to recognize that when I asked for some time to discuss it further with my husband. She assured me it is a decision she does not take lightly. I'm sure the answers to some of the first questions will answer the latter, but I'm having trouble wrapping my head around it enough to make it less redundant.

Questions for the Doctor:

Bottom Line; If her respiratory symptoms are already significantly affected by GERD then we are on board with the Nissen Fundoplication:

1.    Did swallow study confirm GERD and not just aspirations during feeding or has that diagnosis been confirmed here due to respiratory symptoms? Would you object to an impedence probe test before we go ahead with Nissen?

2.    How controlled do you think her reflux currently is on Prevacid and positioning? Do we think that silent/secondary/reflux aspirations are strongly related to her RAD symptoms or solely aspiration during longer/more frequent feeds we did recently?

3.    Trying to understand why bottle feeds create the exacerbation…..what is the RAD reacting to exactly if ENT says upper airway is normal and no reflux irritation? Can you confirm that the respiratory exacerbation we were seeing the past few days was upper respiratory and not lower? Do you deduce it was reflux related?

4.    It seems like we are doing this prophalactically for what could occur, and not based on confirmation that she has already been having silent/secondary/reflux aspirations. Is that incorrect?

5.    Have we ruled out a motility problem/pyloric stenosis by symptoms? If not don’t we need to do a gastric emptying study, so that we’ll know if a pyloroplasty is in order along with the Nissen?

6.    Why do you think a GJ tube is a bad alternative to the Nissen in her case?

7.    How experienced is the surgeon that will be doing the Nissen/G-tube? Can we meet them? We would like to discuss the AMT Mini-One button option as an alternative to the Mic-Key and whether laparoscopy is possible because of her respiratory status.

8.    How will we know if Nissen was successful? Since she has atypical reflux symptoms, will it just be lack of repeat hospitalizations for aspiration pneumonia? (Most people singing the praises of fundiplication are those with typical vomiting behaviors that are seen to reduce, which she doesn’t really seem to have)

9.    How exactly does a Nissen “relax” and a baby “outgrow” it? What happens physiologically?

10.  With RAD, is it adversely indicated if I even take her for a short walk in the stroller outdoors with no people contact? Should we never leave the house except for Dr. appts?

11.  Why are the doctors and nurses so much less alarmed than I am at how low her oxygen dips during crying fits/wheezing? Do I need to drop everything with my son and spend however long calming her down every time?

Some of the research I did came up with these two tidbits that made me think she already has reflux respiratory issues that are signifcant, and even if that is not the case she could be at high risk from her RAD treatment meds and tachypnea episodes.

·         Many of the modes of pharmacotherapy for a reactive airway, including beta adrenergic agonists and xanthines, can lower LES tone, thereby increasing the propensity for reflux. Also the increased negative intrathoracic pressure from coughing and wheezing and the increased negative intrathoracic pressure from hiccups and stridor can exacerbate reflux.  Winter HS Gastroesophogeal Reflux. Comprehensive Therapy 1989; 15 (2) :  6-10

·         45% of coughing reflux episodes were non-acid reflux. I wonder now how much of her coughing is because of reflux instead of RAD. And non-acid reflux will be missed on a PH probe test but the newer Impedence probe test will capture it.

 I've probably been to 10 times the links I'm including below, but these are some easier to understand articles and anecdotal stories that were helpful:

http://www.jaoa.org/content/100/12_suppl/11S.full.pdf

http://www.ipeg.org/education/guidelines/gerd.html 

http://www.feedingtubeawareness.org/Nissen-Fundoplication.html

http://articles.complexchild.com/july2011/00304.html

http://www.articles.complexchild.com/00009.html

 http://www.our-sma-angels.com/elizabeth/gtube_nissen_opinions.htm

 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2851633/

 I think Google should give me an honorary doctorate.

The Most Important Thing to Remember about the NICU....

The most important thing to remember about the NICU is that it will one day be over. I had been told that and it has been a mantra that has kept me going on some of my toughest days.

But this week as her possible discharge on Wednesday loomed, I found myself facing the reality that while her time in the NICU is hopefully coming to a close a lot more of the NICU is coming home with her than I expected.

There would be feeding pumps, NG tubes, breathing treatments, and multiple medications as well as weekly visits from home health nurses.  And if after a few months she did not progress her bottle feeding then there could be a G-tube placement.

It didn't seem as intimidating a week ago and all I wanted was my baby back so I wouldn't miss out on her life, but then as it loomed closer the reality of it is a bit more unverving. Thanks to http://www.feedingtubeawareness.com/index.html I was starting to see the possibility of a g-tube in our future as a more positive and temporary thing. Initially I saw it as a slippery slope to long term feeding issues that was only for "really sick babies." And I was certain my baby was not one of "them." But I'm beginning to accept that while it could be worse, RAD along with BPD and GERD are serious diagnosis that can cause some longer term issues that will complicate all of our lives. It sucks.

It's a mixed bag but it could be so much worse because I know of babies that go home on trachs and have much more complex issues. I tried to keep that in mind, but still felt down because my baby is going to have more struggles than I had hoped for. It still baffles me a bit that these issues were always present, but the initial NICU ride seemed so smooth and how she was 5 lbs ago did not seem to indicate what would come to pass.

I expected linear progress in bottlefeeding, but now I realize I was in denial and being a bit naive. I had seen her bottle feed like a pro, so once the formula was thickened to prevent aspiration issues she was having problem solved right?! Not exactly. Enter Reactive Airway Disease. I'm told that if her breathing was just fine she would probably be bottle feeding without a problem, but being the way it is it makes bottle feeding so much work that she is either incapable or uninterested for the majority of her bottle feeds. I was beginning to fear oral aversion and g-tube as more real possibilities. But then again, for at least two of her bottle feeds per day she sucked down all 75ml no problem. There is no way to predict the future and only our little Tara (who just hit 9lbs) holds the key to what happens next. Those of you that know me know I don't exactly thrive on  uncertainty.

I had a rough bottle feed the Friday night that did scare me, and I got to see her get worked up for no good reason and be difficult to calm down. The next morning it got worse and she began wheezing and I called off the bottle feed. The nurse concurred with my assessment, which helped me trust my judgement. But it just shows me that I'll be having to make some judgement calls with no nurse to guide me about whether to continue a bottle feed or not in the future. I wanted to push her just enough to progress her oral feedings and she doesn't become "lazy" and progressively resort to NG feeds, but not push her too much that I compromise her breathing significantly.

I thought the scariest part was that when she cries and gets worked up it causes respiratory compromise, so there is urgency in getting her calmed down. Her oxygen dips into the 40's and she sometimes stops crying just due to the exhaustion that causes. I"m trying to figure out why the nurses aren't as alarmed by it as I am. With my son I can reassure myself that he is okay and can go ahead and get the bottle ready knowing he is fine and will stop crying in a minute when I bring it to him. With her I have to respond immediately and there is no such thing as "crying it out" with her due to her respiratory issues. That is a freaking ton of extra pressure. Did I mention I have TWINS! My little man is going to have to cope on his own more than I wish he did, because if they are both crying for attention she will have to be the one that gets it for medical reasons.

I think I'm also mourning the loss of freedom. I'm trying to understand the "reactive" part of RAD and if by simply stepping out my front door I'm putting her in danger. Do I really only take them outdoors for doctor appointments only? For how long? Am I being irresponsible if I put them in a stroller and take an evening walk alone with no people nearby in April? What if I take them to a relatives house?

I was hoping to regain my excitement about her finally coming home, but  in the days before her discharge I was only feeling anxious and have so many unanswered questions about what the future holds and all the implications of her diagnoses. But then Sunday happened. Then Monday and Tuesday. And now it is Wednesday and in case you hadn't noticed there is no celebratory post that my baby is finally home.

The NICU journey is now far from over. Update to follow.

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.

Day 6: For the love of Tang and toilet paper

Day 6 for me, day 19 for my babies. My fears about weight gain were unfounded because I missed a few pages of the chart somehow last time I looked. My little girl is now 990 grams, which is about 2 lbs and 3 oz. This is 2 oz or so over her birthweight. Vivek is 1060 grams!!! This is around 2 lbs 5ozs, still not quite up to his birthweight of 2 lbs 7 oz but gaining much more than I thought.

I spent an hour and a half doing kangaroo care with Vivek today, but only 30 min with Tara because she had to go back to the isolette due to some desats in the 50’s and she got a little cyanotic. I wasn’t able to tell as well as the nurses but now I know to look for the bottoms of the feet looking ashen instead of pink. The doctor was there and I saw how they stimulated her back up to the 90’s. They then suctioned her and she had a better time after that. They clearly attribute all her desats to her GERD, and they will subside over time. I know from what I’ve read that this is normal, and I could actually expect a lot worse than I’m actually seeing. But knowing that doesn’t make it much easier to experience as a parent. I remind myself that she is on room air and no oxygen support at 29 weeks gestation which is still spectacular. I asked the doctor at what point would they put her on oxygen support, and she assured me they had no plans to. I asked again and they said if she desatted below the 50^th percentile like that all the time and did not pull herself out of it with stimulation then they would go to nasal cannula. I felt better seeing both doctors and nurses attending to her and doing the suction, and it assured me she is getting proper attention and care when I’m not there.

 

I got confirmation on another thing I expected to hear…my son’s testes are undescended. I'm sure he'll thank me later for sharing this on the internet. For other anxious preemie parents out there, this is normal when they are born before this has a chance to happen. They will likely descend on their own with time. However this can be associated with inguinal hernias, and can sometimes require surgery. I’ve actually had that exact kind of hernia and had surgery myself for it, though strangely only 1% of women get that type of hernia. If the months pass and it doesn’t resolve we’ll address it once we are back in the US, but it is not a big deal and was something I’d expected.

I got to watch two new babies, a set of twins, get brought in right after birth. They are giant full termers so their parents will be short timers in the NICU. Me...I”m serving more serious time. There was a lot of fussing getting them all cleaned up and prepped and hooked up to lines and monitors, and they cried an awful lot. I did hear that a baby did die yesterday, and that was probably what was happening in the other room that I wrote about yesterday. This baby was much bigger than ours but had breathing problems from birth and had been struggling. Very sad. I’m told it was a local parent and not one of Dr. Patel’s patients.

So my biggest concerns right now are finding the State Bank ATM that I can’t seem to locate, which is the one machine that may not reject my card. I gave up at the point yesterday where a walk anywhere meant being ankle deep in muddy water contaminated with God knows what else. ATM's give the best exchange rate I’m told.

I also need to resolve my account with Dr. Patel and make payment to the NICU but their never seems to a be a good time. Hopefully tomorrow I can take charge and get both done.

So today I decided to go for a little adventure since my allergies were fully gone for the day and I felt better than I had since I got here. In spite of the rainy season, I decided not to carry my umbrella around and a little rain wouldn’t hurt me. I'm sure you can see where this one is going. I let myself wander lost through the streets with the ultimate goal of eventually catching a Tuk Tuk to D-Mart to score some toilet paper and feed my Tang addiction.

The coolest thing I saw was a place I'd read about where they make statues of Gods and Goddesses for festivals that at the end are burned as effigies. There is hay in the center and mud and clay on the outside. I was taking a picture and the owner with his chest puffed up in pride invited me in for more pictures. I took a few and tried to leave but he kept saying “nightshade.” I recall nightshade as being a plant with some kind of psychotropic properties and became concerned about why he wanted me to go deeper inside, and then he flipped on the lights and I understood he wanted me to get a better picture and I felt like an idiot. I thanked him and all the sculpture artists and took the shots you see below.

 

I am glad on this trip I didn't wear a saree because in ankle deep water it is going to get wet or you have to hold it up constantly. I find D-Mart and it is the micro mini WalMart of Anand. I was hoping for more in the food section, but I did find what I needed and like it about as much as Big Bazaar. I was hoping to walk back to the Alpha Restaurant about a mile away because my friend had told me it was their favorite place, but I was distracted from my goal by pictures of mouth watering food on a sign closer by. The bag from D-Mart was heavy to carry, but when I saw a picture of a giant juicy hamburger and fries I was done for. I practically ran to the front of the Dawat restaurant, where a doorman opened it for me so gracefully I mistook it for an automatic door. My first disappointment was to realize that I'd come at off hours so there would be 8 waiters either over-helping me or staring at me. Then one look at their rather substantial menu told me that nothing on the sign...read JUICY HAMBURGER....is actually served in the restaurant. I should have known better...but the picture of the hamburger sent me into a feeding frenzy. I would have been happy with something that even resembled one. My pulse races when I see bartha, my favorite Indian eggplant dish. I order it with glee, and find out that it is out of season. Now doubly disappointed I order papadi chat as an appetizer and malai kofta with sweet lemon soda. The chat was enough for three people, and the malai kofta was nowhere near as good as my wonderful mother-in-law makes. But I ate it happily and was waited on hand and foot, and even given a dish of warm water to clean off my fingertips with at the end. All for the bargain price of $3.50. Trip Advisor rates it #3 out of 8 restraurants worth eating at in Anand. http://www.tripadvisor.in/Restaurants-g1155996-Anand_Gujarat.html  I want to try "Decent Restaurant" just cause the name is so funny.

I missed the pouring rain while I was eating, but when I return outside I see that what was partially flooded is now entirely flooded. I see a lone Tuk Tuk driver and ask him for a ride back to my hotel. He seems to know it, but insists on $50 rupees. I am set on 40 and for some reason feel very stubborn about it despite the flood. Don't ask me why half the drivers here don't know Rama Residency or “Station Road by railway train station” when this town is so freaking small.

So in my sturbborness I keep walking, and attract many more stares than usual. I guess it contradicts your assumptions when you live in India on $1 a day and are riding around in a Tuk-Tuk to avoid the water even though you have an umbrella, then see what is supposed to be a rich foreigner walking instead looking like a drowned rat without one. I try another driver and he clearly doesn't know my destination. Then when walking through high water the snaps on my shoes come undone in the fast current, and I slip and fall to my knees. This was very embarassing, and fortunately I wasn't narrowly avoiding traffic at this juncture of the road like I usually was. Death by Tuk-Tuk...I would feel so bad for all my family at the funeral having to explain how I died.

I redo my shoe snaps while random guy tries not to stare or laugh at my misfortune. I finally find a driver who seems about 50% sure of my destination and agrees to my price. I try not to stare at his teeth and fail miserably because they were the worst teeth I'd ever seen. He gets close to my destination but admits he is not sure where to go from there. I try everything I can think of. I say Kaival Hospital. Apara Nursing Home. Mahatma Gandhi statue by rail/train station. But then I say Dr. Nayana Patel, and it is instant recognition. He drives me right to her office.

I walk across the street to my hotel, worse for the wear but somehow feeling like despite my misadventures, today was a lot more fun that yesterday. I think that I should venture into Anand daily even if I have no purpose. Just the exploration lifts my spirits and helps me to accept my surroundings rather than feel like I am avoiding them holed up in a hotel room.

Other random happenings today. A student of social work drops by my hotel room with a poorly written survey for patient's of Dr. Patel, with Dr. Patel's endorsement to do. I fill it out anyway despite horrible questions like “If Dr. Patel recommended an amniocentesis due to possible problems would you abort the baby, yes or no.” I write it depends on the results of the amnio and if an extremely severe defect was discovered. Sigh.

I did finally get my cell phone delivered thanks to my husband's cousin and his connections in Ahmedabad. It is a comfort now that I won't miss all the calls from family and can make any calls I need to .

I’ve learned a few random tips in the past few days from some other patients of Dr. Patel. At the Rama Residency you can get a bigger room where they put a mattress on the floor, which is used for the babies to sleep on. It has a king and a twin bed for the nanny, as well as the floor mattress for babies. Uday could get you a crib, but I guess this is the Rama alternative. I was happy to lend my mosquito net crib contraption to my friend who may be bringing her twins back to Rama from the NICU today depending on how it goes…so exciting! Other random tips:

1. Keep all food stuffs in containers…beware of the sugar ants!!! I have had some before so you have to be careful to avoid an infestation because those suckers move quick!

2. The Chocolate Room close to the Subway is as awesome as it sounds. Chocolate pancakes, chocolate waffles and chocolate/coffee drinks.

3. D-Mart is about as big or bigger than Big Bazaar and has more American foods and slightly better prices. I didn't do much price comparison, but D-Mart has more clothes for sure and Big Bazaar has more home goods and appliances.

4. Big Bazaar has a spa on the 3^rd floor which is pretty good and charges comparable US prices of $45 for an hour.

5. Tell the front desk no visitors to your room so that no money seekers will head your way. This is why I didn’t tell our surrogate our room #.

6. Shipping to India is crazy expensive (which I already knew) and your shipment is likely to get picked through in customs and only part of it will arrive. Despicable, but that is why you should bring what you need and pay extra for baggage.

7. Madhuban Resort and Spa review: Tuk-tuk there (maybe 100 rupees at most) and then took the Madhuban-car back to the Rama (it was $7 for the return trip).  Lunch there was pretty cheap.  They had a "Chicken sandwich" which I got.  The picture on the table showed a whole chicken breast but that's not what you get.  You get chicken-flakes and they're pretty spicy.  My husband got a spaghetti-bolognase meat-sauce thing and he didn't like it.  He said it was real spicy.  He got Chicken-Tikka the next time and said it was really good.  They have a big lunch buffet set up daily that most people seemed to be getting, it was all Indian food.  

8. Dr. Hitesh can write you a prescription for antibiotics if you get sick.

That is all I can think of for now. This is a long post because once I again I took a “nap” and missed my second trip to see my babies and woke up at 1:30am with plenty of time to chronicle my misadventures while watching a late night showing of Mars Attacks while eating leftover cold malai kofta that looks like something a cat would throw up. I seriously need to stay awake a full day and get into the rythym of life here, but I think my 3 mile hike wore me out today. Here is little Miss Tara with her eyes open for a grand finale.