Vinnie picked them up at the embassy today along with the CRBA certificates that state our children are United States citizens.
We also made a long trip across town this evening to an ROP surgeon and all is clear so far. Vivek is out of the woods and Tara will need one more checkup in two weeks, but by then we'll be back in the US.
Vinnie leaves in the early AM hours Monday, and Monday morning at 9:30 I'll be at the FFRO applying for the babies VISAS! It normally takes 1-3 days, so barring any problems we could be out of here by the end of this coming week!!!
So it took half a day after we were told discharge was in the morning, but we finally busted Tara outta the NICU at Sir Ganga Ram hospital. Hours of waiting. They would just make up stuff to tell my husband what was taking so long, true to their informal policy to placate rather than inform parents. He was stuck for hours in billing, and it took another hour just to have someone walk her medical records back from there so that we could get a copy. There are no laws to protect us and we have no power here, so we got only $100 back despite a dangerous and painful procedure being done and medications given unecessarily due to their medical error. They gave me a tiny sheet of paper to put any suggestions on at the end, which I filled up front and back. I doubt it will make a difference.
Everyone kept telling me to calm down and not get angry, but clearly they only got anything done when I was making a stink. The doctor who spends a whopping 5 min with my daughter daily still thought her breathing didn't look entirely normal, and wanted a repeat echocardiagram. I frankly think he and his staff are misidentifying "retractions" in breathing because her brother's breathing pattern looks the exact same and she always breathes fast when she is hungry, which she always was there. Since she's been home she has easily eaten double what they fed her there without a problem, and just 5 minutes ago she almost ate triple after she cried for more when the bottle was done.
Anyway, the pediatric cardiologist Dr. Singh was obviously annoyed that they asked him to repeat the procedure he had done 7 days previous because they were implying he had missed something. The line they fed me was that they were making sure the PDA (Patent ductus arteriosis-an arterial hole all babies have they closes late in preemies) had not gotten bigger and become more significant. When the procedure was done Dr. Singh turned to me and said "Congratulations...the PDA has closed." We were both obviously vindicated, but I think I was the only one fighting the urge to yell "In your face! Boo yah!" to the primary doctor.
Now that Tara is home things are back to normal, though she is more alert than ever and cries more...probably because she knows her cries won't be ignored here. The biggest frustration since she has been home is that she is on a 2 hour feeding schedule after we worked so hard to get them both on a 2 1/2 hour in order to move gradually towards a 3 hour. Back to square one. By 1 hour and 45 minutes she is screaming for food, which she never did even when she was on a 2 hour before...so I figure she is just very hungry trying to gain back all the weight she lost. Vivek is not complaining and has gotten on the 2 hour wagon, so hopefully early next week we can move forward again to a 2 1/2 hour schedule. Vinnie is on board with my cardinal rule of twindom to keep them on the same schedule at all times lest we never sleep again. At least we have Vinnie here a few more days as well as Mom and Geeta to help out so it is manageable. I've even found a way to position them so that I can put bottles in both mouths at the same time to help them stay in sync.
Subhash's sister Bebi Auntie is taking a train trip from Chandigahr to here to see the babies and stay the night, so tomorrow should be fun day aside from the trip to a retinal surgeon for one last ROP checkup. Vinnie and I are busy trying to prep for the FFRO/VISA appointment, which as we thought will occur after he leaves on the 15th. I hope tomorrow the embassy will have good news and we can pick up our passports, but it may not be until next week. I can't wait to get home!
I did an "exit interview" with Tara discussing her experience at the Sir Ganga Ram NICU, and here are her reactions:
Tara ponders her feelings about the week away from her family
Tara considers the attitude of the nurses
Tara's reaction to her father only being allowed 10 min a day with her
Tara's reaction to having IV antibiotics into her foot
Flashback to the spinal tap procedure
I asked Vivek what his feelings were on having his sister finally home and having to share some of the spotlight again.
If you were to ask me would I rather have Tara in this big city modern hospital that is much more comparable to an American one or back in the small NICU with Dr. Kothiala, I would pick Dr. Kothiala hands down without a second thought. This NICU is huge and impersonal, and despite the fact that they all seem to do a good job learning the babies' names it does not mean that they do near as good of a job treating them like little people. Because my daughter is septic (has a blood infection) she is in a room with all the other babies who could be contagious. Out of 27 babies here 4 are ventilated and those 4 are all next to my daughter. Not comforting for me that all the babies with infections are in such serious shape, or that my daughter is at constant risk of catching what they have if the nurses slip up. Combine that with the fact that all these critical babies need constant attention and care and my daughter who needs no special care aside from IV antibiotics 3 times a day needs and the standard feeding and diaper changes. My daughter is virtually ignored and they failed to notice that she cries 30 minutes before a feed because she is HUNGRY! I expressed 3 times to 3 nurses that she was hungry, and tried to tell them that on the 18th when she was discharged at 1884 grams she was eating 35-40 mL every 2 hours, she was eating almost 50 every 2 1/2 hours at home, and now when she is 2355 grams they feed her 30mL and try to blame the 155gram weight loss on the bacterial infection. I don't think so! After talking to 2 doctors they finally agreed to feed her more, though I had a not so nice conversation with the first doctor who tried not to listen and talked down to me explaining that because of her very minor PDA (YES I know what that is so put down your pen and stop diagramming on paper) they had to feed her less. In Anand at least they understood the simple principle that if a baby is hungry FEED IT! Her O2 sats are fine before and after a feeding so I even if her breathing is slightly heavier when she is full I fail to see the problem! I breathe far heavier than that after a Thanksgiving meal and they don't admit me to a hospital...though perhaps they should because eating that much turkey and stuffing and pie perhaps I need serious psychiatric counseling.
This morning I was shocked to see her weight loss on the chart, when another nurse who talks and doesn't listen tried took the chart out of my hands and told me hospital rules state I cannot see my daughter's medical records. I lost my temper completely. I told her that was an idiotic rule and in my anger I told her in America that would never be allowed, and there should be nothing they hide from me about my daughter's condition. I managed to hold my tongue when she said India and America are different, because I have a couple of inappropriate comments about that. I alarmed her so much she called in the doctor I mentioned previously and he said in my case he would allow me to see her chart, and it is only in the most severe cases they do not allow it. That defies reason, but I got my concession so I managed to keep my big mouth shut.
He actually tried to tell me that all the chart had in it was her oxygenation levels blah blah blah and I cut him off and told him yes I do know how to read and do know what it contains. I had half a mind to tell him that I have 15 years training and experience in emergency medicine as an EMT/EMD and have spent 1 1/2 months with two babies in the NICU so I know what an oxygen saturation is dumbass! What is in her chart is exactly what I need to know to understand how she is doing, more so than their daily "counseling sessions" at 11:30 where I find they do more placating you than actually providing you with information. I know they are used to Indian women who are not as assertive and take this "it will all be okay...just pray to God" attitude that drives me bonkers.
I also despise that they do not allow you to do the most simple things, such as taking a pair of tongs and taking a sterilized breast sheild and bottle out of the sterilizer. I have to wait for a nurse to do something so simple. I also have to wait sometimes for a half hour until a nurse is available to package up Tara for me to hold her. Firstly, they are too busy with all the critical babies surrounding her and charting and hand logging stats and levels every 15 minutes to pay me attention. Secondly, they have a system where a folded up blanket underneath the babies shoulders must be wrapped a certain way in a mediocre swaddle before the baby must be placed in your arms. This means I can't simple pick her up and hold her myself like I could in Anand and have to wait lest I upset a nurse who thinks I can't perform something so basic as well as she can. Today I seized the opportunity when a ventilator broke down and both nurses were tied up bagging the baby and trying to replace the ventilator, and put her back in the isolette myself. They couldn't exactly stop me.
Have I mentioned all the giant oversized gowns they give you to wear are either missing ties so that you have to hold them closed and have only one hand free, or they tie so loosely that they hang open so far down in the front that it defeats the purpose of germ shielding entirely?
I cannot express to you enough how hard it is to be in NICU AFTER you have had your baby at home. It is so much harder to accept all the restrictions when you have had free reign to care for your child as you choose for several weeks. It makes you so angry you want to type everything IN CAPITAL LETTERS!
The one bright spot so far is Charu. So from 10:15-11:00 the nurse facilitator comes in with the mothers in the feeding room and leads and informal educational session and offers guidance. Thank God. She speaks English, as do ALL the nurses (though with varying degrees of accuracy). She talked to me for a half hour answering all my questions and making sense of everything, and giving me much needed reassurance. I found out a lot of things that they were supposed to do during an initiation speech they gave me with a signed orientation sheet a day and half late.:
They only kick you out when they are doing a procedure and during doctor rounds, and a lot of the Mom's come in for feedings or care only.
You get a new gown at the counter everyday, and put it in a dirty bin at the end of the day. In the meantime put it in a bag in the Mother Feeding Room with your name on it.
Fathers may visit for only 10 minutes from 5-6pm. She admitted it is awful, but I understand that it is due to a cultural difference here that the father's role is not at all equal with the mother's.
Doctors do daily "counseling" at 11:30 am and call each mother in to discuss changes in the past 24 hours and answer any questions.
You can also get a bottle for pumping your breast milk into because they have them on hand and sterilize everything for you, and discourage you bringing things from home. They have an accreditation for being breastfeeding friendly.
The facilitator is clearly a lactation consultant and took one look at my cracked and bleeding nipples and launched into a bunch of advice, including to rub some breastmilk on them every hour since it has healing properties and she will give me a cream if it doesn't improve. She said even if I only produce 2 mL of milk they'll be happy to use it. What a relief. She leveled with me about what I am doing and asked me "how long will you really keep this up?" It made me re-evaluate my goals a bit and rededicate myself to breastfeeding...because exclusively pumping is just not going to cut it in this situation. I need to start using the supplementer, because their mouths are big enough to handle it and the longer I wait the harder it will get.
The other bright spot that has restored my sanity is that in 1-2 days we can move to a single room, where I will stay and care for her and I'll have to trust everyone else to care for Vivek at the rental house. I'm hoping it will cut costs, but Vinnie came with Manu and discussed the billing and confirmed it would not be more than the NICU is costing. But most importantly I can be with her and care for her and not allow her to lie alone and cry for a half hour! We can have visitors, and Mom or Vinnie can relieve me so I can visit my son occasionally. This is not how I pictured these last weeks of waiting, and my husband will be flying home on or just after Tara's discharge day. I may have to brave the FFRO alone. If we can get away with bringing 1 baby if passports come before he leaves then we'll do that.
The hardest part of this journey is about to start apparently. I've been so strong this entire time, and people tell me I've displayed many qualities of character that are admirable. But the day I walked into the spinal tap I admit it broke me and for a day I isolated myself and felt defeated and weak and most of all let a negative mindset take over. I've decided after two of the hardest months of my life I'm allowed one crappy day to feel sorry for myself. I'm back now.
An interesting side note...I saw that on my daughter's isolette label tag that identifies each baby's name and vital stats, someone had written "VIP" in the top corner. I thought perhaps it could mean "viral infection protocol" or something medical. So I asked a nurse and she laughed and pinched my daughter's cheeks and said "VIP baby!" and another nurse did the same. I guess it means what I think it means. I don't know if she has been labeled as a VIP because of my foreign status and they guess that makes me rich or something, or simply because I am a constant pain in their a** and so they should try extra hard to treat her well lest they incur my wrath.
Today was a big day. Not only did they turn 2 mos old, but they made the big trip to the US Embassy to fill out the paperwork to get us home and take their DNA test. I used my specially bought Build a Bear outfits in order to make a big impression on the embassy employees deciding our fate.
Tara hopes that her rousing display of patriotism will sway embassy officials
Vivek pays tribute to a national pastime and his mother's Alma Mater. Fightin' Texas Aggie class of 2034!
They gals witnessing the DNA test were so charmed by their outfits that they wanted to take a photo but were upset because all cell phones and cameras get checked in at the entrance. The twins both cried something awful for the 3 cheek swabs each because he had to roughly scrape the cotton swab on their cheeks. Vinnie didn't cry for his. It was hilarious watching the two ladies try to get a thumb print of their teeny tiny thumbs on the card, and next to my husband's giant print it was adorable and I wish I had a photo. The paperwork went smoothly except that despite an instruction sheet to the contrary I'd followed to the letter the night before, they made Vinnie fill out a continuation sheet documenting every time he had been out of the country. It demanded specificity but the boy went to India when he was 5 and that was dates of one of many trips he could not perfectly recall. Idiotic bureacracy but you do the dance they tell you to in order to get your babies home. They did open doors and usher us to the front of the lines, and were mostly helpful.
The main snafu of the day was the dope from Karan studios didn't make our passport photos the correct size and I didn't check them myself. Fortunately they had a photographer on site. Unfortunately Vivek decided to break his alert streak and refused to open his eyes, while Miss Tara was muggin for the camera no problem. It took almost 15 minutes and I was sweating and frustrated after flicking his feat and rubbing and singing and whistling and snapping and drumming the table, and the camera man was getting impatient. He cried and flailed but refused to open his eyes until the last minute when instead of antagonizing him I broke and grabbed him off the table and comforted him. Then I put him back on the table and we managed to get a photo of the right size printed after he clicked the shutter during the millisecond he had both eyes open.
They did forget to have Vinnie sign 1 document, but called our cell and were extremely apologetic about it and he can come back by himself while I care for the babies. They said that once the DNA results are in they will process the paperwork and call us to pick it up there between 2-4. We felt safer doing that then paying a courier service to deliver it to where we are staying. They said that they will process it as an expedited emergency passport to speed up the process, and with our DNA test being paid for 72 hour expedited processing too I have high hopes of being out of here in about 3 weeks. I did get my main question answered...I DO NOT have to purchase my plane ticket before going to the FFRO, which concerned me since I didn't want to pay transfer fees if the process took longer than the average 2-3 days. The only thing left to worry about now is whether they try to make us go back to the Anand FFRO, but if the tricks I learned on the net to go to the MHA first and put your local address on everything you can for residency works then we'll be home free.
Yes Vivek...did you have a question? (He was actually sleeping with 1 hand in the air!)
After taking a taxi back Vinnie did two diaper and wardrobe changes, and I taught him how to administer all the supplement drops. It was hilarous and he was missing their mouths and making a mess. I think it took him a half hour for each baby. We got in trouble for not informing the family that we had gotten back and all was well, but we are not used to so many folks worrying about our welfare all the time. We apologized and promised to make sure they knew our whearabouts, even if we are confident we can get around India on our own.
Mom returned and I took a long awaited four hour nap while they took care of the babies. Vinnie had forgotten my advice to change diapers at every feeding if they don't show signs of discomfort beforehand, and so I awoke to some diapers so full that they defied the laws of physics.
My little man filling up diapers to their utmost limits
I think the best moment of the day was when they called the "Grover family" up to the window. It was the first time I had heard someone say that, and it made me feel super warm and squishy inside. Then she had us take an oath of parentage, and it was a quick official moment but felt good to say as we stared at passport photos of our children and vowed that we were indeed their parents.
