Day 36: Light at the end of the tunnel

Tody was a huge day! After a long wait we finally have been given a discharge day!!! They can come "home" on the 18th as soon as my Snuza apnea alarms arrive by FedEx. I know it isn't set in stone, but I'm so excited anyway that this NICU journey has a visible end in sight. I rapidly dove into my to do list and took care of the following:

1. Told my husband to arrange a flight for Monday the 24th to Delhi and to get packing and pre-order the DNA kit. I found out today we should have ordered it a month in advance to be safe because they are used to keeping them stored there for folks like us.

2. Emailed the US Embassy in Delhi and set a CRBA (citizen report of birth abroad) appointment for Thursday the 27th at 10:30 am. I had the hotel print out the appointment confirmation because you have to bring it there.

3. Emailed the DNA specific embassy address to let them know the DNA kit is being mailed and to set our DNA collection appointment (cheek swabs) for the same day as the CRBA.  

4. Emailed my husband's cousin to book flights to Delhi on Monday the 24th from Anand for Mom and I and two babies, and help us ship our less necessary luggage there.

5. Booked the large room with the double and a single bed for the nanny from the 18th-24th and let them know when we'll be checking out.

Tomorrow's to do list is important as well. I've got to see Dr. Hitesh to do a money exchange for Mom, but also to book a good nanny and make sure Manju re-signs the contract and we get the original before we leave. Later I'll also have to make sure to get passport photos done by Karan photo studio below our hotel, but they come to the room and bring the pics back in an hour or two so that should be cake. When the babies are discharged and I get Dr. Kothiala's records and a letter that they are okay to travel we should be good to go!

But the day wasn't done there. Vivek had a very big day. His 2nd testicle dropped! Hopefully this means no hernia worries, but Dr. Kothiala can't be sure until she checks when he is crying...but she says he never cries. But this definitely means no worries about testicle extraction procedures, which don't sound fun.

Dr. Kothiala said she thinks that Tara looks like her grandmother! She also his having a cardiologist come in and just double check her heart for me, since I want to be sure the hole is closing up and so minor as to not be a problem.

But Vivek wasn't done yet. The eye doctor came and re-evaluated after the 15 day waiting period. Tara had stage 2 ROP (see previous post) in her right eye while her left was 1 and both of Vivek's were stage 1. So we thought if anyone needed laser surgery to halt irregular vessel growth it would be her. Wrong. Her eyes stayed the same over those 15 days but his both progressed to stage 2 and weren't stopping on their own. So he said the sooner we did laser surgery the better, and I agreed and said today was fine with him if could be arranged. The cost was only 11,500 rupees. I'm sure in the US it would be thousands.

Plans were made and he was packaged up in the carrier after much fussing over by the nurses and Dr. Tipica. Then he ventured out into the world for the first time with me carrying him and Mom carrying his bag of essentials and the nurse Daksha following along. We took a tuk-tuk about 2 minutes away just past Dr. Patel's to Dr. Amin's eye surgery center. It was a bouncy ride but it didn't seem to bother Vivek much, who was taking in the fresh air and napping. I was beyond wierd to see him with no wires attached out in the big world. I wanted to form a force field around him to keep him safe, and I'm sure I'll feel that way many times throughout my life. It was surreal but exciting to see him on his first big adventure, and made me even more excited for when I get to take him with me forever.

Nurse Daksha and our precious cargo


When we arrived he attracted much attention, though fortunately everyone kept a safe distance. I got my first taste of showing off my baby boy to strangers. While we waited Vivek decided to fill up his diaper and stink up the waiting room. That's my boy! Fortunately this was something Mommy anticipated and I tucked some diapers and wipes in a baggie hidden in the carrier seat.  Daksha changed it for us, but seem perturbed that we would be stuck holding a dirty diaper for a over an hour and seemed to want me to take care of it. Like most of India there were no obvious trash cans. I temporarily stuffed it in the ziploc baggie and hid it beneath the carrier. When we finally were called into the waiting room the Dr. had his back turned and I saw a wastebasket and went for it. Daksha got a bad case of the giggles when she saw me do it.

I had wanted the nurse to be allowed to stay with him, but they kicked her out too. Mental note: Next time you are in a waiting room while doctors are doing something to your child, do not sit in the chair closest to the room where you can hear him scream and cry. It was hard, but refused to let myself cry though Mom did break down halfway through her prayer book. I think Daksha kept chatting with her in Hindi to keep her distracted. I knew crying meant he was okay, and it was mostly him crying because he was being held down and his eyes were being held open. He did not sound happy in the slightest. They gave him a 10 min break in between eyes and let me hold him, and I'm not sure if that was more about comforting me or comforting him. 

View from the waiting room. Relief of ancient eye surgery with a dude being held down and a big stick poked in his eye adorns the wall. Not comforting at all.

Either way it was over in a grand total of 45 minutes and we had him packaged back up then settled in the NICU before I knew it. Vivek should not have any ROP vision problems now and is snug as a bug in a rug resting up. He'll probably not open his eyes for 24 hrs due to swelling and will have eye drops 4 times a day, but otherwise he is good as new. I wanted to stay and give him his next bottle and cuddle, but I know he probably needed to rest and they seemed to want us out of the way because a critically ill baby with a ventilator was brought in. We left him to sleep, and since Mom and I are a little worse for the wear so we both had some ice cream after a hard day. 

I just hope I can sleep now that I'm so excited that we have less than a week until I don't have to say goodbye.

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. (Sorry..it 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!