Day 71: Discharge and FRRO tomorrow

Princess Tara has been given the green light for discharge tomorrow. We've geen given instructions for how to prevent her microaspirations as I previously posted, along with a strict limit of 45mL per feed every 2 hours. She will possibly cry for more, but we have established now that contrary to what the doctors typically say for most babies do not feed until she seems full because she does not recognize how much is too much. She gained 350 grams in 2 1/2 days from her last discharge, so she eats more than she can handle and retains water and it puts strain on her kidneys. I can get on board with 45 mL, just not 30mL that causes weight loss and extremes of hunger. He did say if she seemed very hungry we can wait an hour between feeds and top her off if needed to avoid reflux issues.

So today has been a frenzy of getting the passport photos resized to the correct size (I hate you guy from Karan Studios in Anand!) as well as printing out applications for the Exit VISA. Tomorrow we will go to the FRRO, and after that is over I think my usual positive outlook will totally return. I guess I'm just too afraid to get my hopes up lest something go wrong. I'm not above begging should they put a roadblock in our path, because I'm told the FRRO is the toughest step with the most Indian bureaucracy to navigate.

My husband is now safe at home in America. It was tough to say goodbye but we hold out hope it won't be for long. We spend little time with family here to keep risk of infection at a minimum, so Minnie took us out to dinner for our first outing in Delhi and it was a nice change of pace to be outside and be with everyone. All the kids joined us, and we ate at Nirula's Potpourri. Vinnie had good memories from childhood because everyday Mon Uncle would bring him a pizza from there because he was a little brat and he would only eat that, corn, or Choco Nut ice cream the entire time he stayed in India. His tastes have widened slightly over the years, and let's hope his children aren't that particular! This is his 9th trip to India, and hopefully his last for a good long time. I think we have had our fill of India, but next time we come it will be with a tourist mindset and itinerary and I'm sure we'll have much more fun showing the twins their country of origin.

Meanwhile Mom and I are biding our time waiting. I'm watching old TV episodes Vinnie downloaded to my computer and it makes the hours pass faster. I enjoy my time with Vivek but he does sleep an awful lot and Dadima doesn't share well. Geeta is a joy to be around and such a huge help, and I trust her completely with the babies. I got some cute shots of her talking to Vivek when she didn't know I was watching and sneaking photos.

 

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 41: Last day in NICU!!!

So exciting! It was our babies last day in NICU, and I still found it hard to believe that they are actually handing these babies over to me tomorrow in spite of the several day countdown to that moment. Feeding them is much easier, and Mom has bottle feeding down for both babies just fine. Master Vik has made a colossal weight jump and is just under 2kg by a hair!!! He's got some super chubby cheeks to show for it too...



Those cheeks make me want to kiss and pinch them!

Our nanny Priyanka did not show at 11am as planned, but it turned out to be Dr. Hitesh's mistake who had told her to be at his office at 10am. She was not just prompt, but she had been waiting there since 9am! She stuck around and did a bang up job at the 1pm feeding, then went home and came back for the 5pm. Mom and I decided she deserves to be paid for today because she put in so much extra time. She has been a nanny too many times to name, and has 3 children of her own. Mom asked her and it turns out her husband left her and so she pays $50,000 rupees per year for boarding school for all of them and she works like a dog to pay for it. She makes a lot doing nanny gigs, so she gives that her all. I could tell from the way she handled them that she knows what she is doing, so I may be able to sleep while she cares for them after all.

Tara wondering what life outside of the NICU will be like

It will be rough because until they are both 2kgs we are keeping them on a 2hr feeding schedule, but afterwards will gradually switch them to 3. They also have 5 different oral suspension drops to administer each day so I'll have to take notes and schedule those. I just set my iphone clock to the feeding times.

I've worked my way down all the prep lists, and just finished sterilizing all my silicone nipples so that we will only have to sterilize anything once a day because everything is now pre sterilized. I have enough of the small bottles that my brother supplied me with that we could go two days if we really had to. 


Tomorrow morning we pack up and move to the big room with the extra twin bed and small floor level framed mattress that serves as a giant crib. Dr. Kothiala will loan us some of the plexiglass risers she uses to keep the babies elevated, which we can return before we leave. I've also gotten back my 6 preemie hats that had gotten mixed in with the rest of the baby hats somehow.  I've redone my budget and solved some problems and once we get our new room setup done we'll be ready to go!!! I discussed tomorrow's transition with both babies as you can see, to a mixed reaction.

P.S. As an interesting side note to those who visit the NICU in the future, if you are wondering why there are no suctioning machines, it is because they use manual power! They have a device with a vial in the center to catch the liquid and one tube goes down baby and the other goes right into the nurses mouth! It works just as well, and perhaps even better because you can instantly adjust as needed.



Travel Problems & Solutions

I'm so excited that my little crib contraption arrived today! I have a plan....   My hotel doesn' t have cribs and they are harder to come by in India, but I want a place for my babies to sleep. It has to be at a safe angle as their primary sleeping place, and car seats at a 45 degree can occlude breathing so aren't ideal for sleeping...especially with preemies who have more apnea risk. Twins and preemie's also often  need to sleep on a tilt to help with any reflux issues early on. But packing an crib/bassinet is not very feasible.

All the travel bassinets I looked at cost $40 and were not looking sizeable enough for two.

So my solution is to pack the mattress for our Graco Pack n' Play which folds into fourths and will fit in the suitcase. This is firm enough, because adult mattresses are too soft for babies and not safe because there are typically blankets and adults on them. Some people may find me paranoid but it is a real risk, and so I'm just being practical and careful within reason based on the latest research. I have have heard the screams of parents who found their babies who had died of SIDS, and it stays with you whether you want it to or not.

The second part of my plan is to use the contraption below that I ordered off of Ebay for $7.29!

http://www.ebay.com/itm/New-Foldable-Baby-Crib-With-Mosquito-Net-Tent-Bed-/270941661191?pt=LH_DefaultDomain_0&hash=item3f1561a807

I'll bring some little clips to attach the sides of the mattress to the little mosquito net crib, but this gives us a light and packable crib that keeps insects out and a more secure space for our two little ones that is portable and large enough for two. With the clips I can roll up a towel under the mattress and tilt the whole thing at an angle if need be for reflux issues.

I've also figured out other solutions for our sterilizing issues in India due to water supply and not wanting to go through tons of bottled water rinsing and sterilizing. I'm not buying some "bottle system" with a custom fitting sterilizer contraption. I have mismatched bottles as well as pacifiers and other items that will need sterilization.  I won't have a microwave, so I bought the Baby Bullet Turbo Steamer. It can sterilize and plugs into the wall (converter must be used for India) and can also defrost frozen baby food or breastmilk, as well as steam other foods. It will use less bottled water too. For sterilizing on the plane Boots makes portable sterilizer bags, but I'll just use ziploc bags, a bottle of water, and some Milton sterilizing tablets.

I hope to fly back on the airline that has the double bassinets that hook on the wall, but if not we'll use my homemade Moby wraps I guess. Some carriers have baby carriers, so I'll have to research that more before we buy a return flight.

I'm bringing a hot plate to India and will buy a pot there, that way we can cook and bring our own meals if we want and boil something to sterilize it if we so desire.  For bathing the babies a boiling pot won't work I assume, so the Puj foldable bathtub should work just fine.  It uses magnets to clip it in the bathing position, but then it folds out flat. It is made of a semi-soft and waterproof foam. Excellent!