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 68: Certifiable

Great news today!

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!!!



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 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.



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!