Thursday, October 11, 2012

Day 67: Home again

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

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

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

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

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

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

Tara ponders her feelings about the week away from her family

Tara considers the attitude of the nurses

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

Tara's reaction to having IV antibiotics into her foot

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

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