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 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!!!



Amended NICU packing list

So here is my amended packing list I've redone on the fly based on all the new plans and info I've obtained. If I come up with anything new I'll just amend this post.

Buy in Anand at Big Bazaar:

·         dish soap

·         washcloths
·         Pot for hot plate

·         Baby carriers (cheap ones to avoid  bringing our car seats and stroller)

·         Shampoo/conditioner

Feeding:

·         Hot plate

·         48 60 ml bottles, nipples

·         48 nipples, including some silicone ones since the rubber ones start to fail after a while

·         Nipple shields with mini-scissors  to trim them. This helps with nipple confusion if you will still attempt to breastfeed.

·         Lact-aid supplemental nursing system

·         Bandaids/first aid tape to hold down Lact-Aid tubes

·         Baby bullet steamer for sterilization

·         Burp cloths

·         Domperidone

·         Supplements for breastfeeding: Blessed Thistle, Fenugreek, Fennel seed, Alfalfa (I couldn't find Anise or Goat's Rue or some of the others, but these four are the most common. I just bought plain fenugreek and fennel seeds at the spice counter because it is three times cheaper and just involves some swallowing and chewing.)

·         Breast pump & attachments (I rented the top of the line Medela Symphony hospital grade pump)

·         Pacifiers (an assortment, but mostly the soothie type)

·         Inflateable My Breast Friend twin pillow

·         Beaba battery powered formula mixer (mixes in bottle to avoid shaking and creating bubbles/gas)

·         Washable nipple pads for leakage (silicone ones were better but expensive)

·         Medela quick clean wipes

·         Pacifier wipes

·         Formula container (tupperware container that has at least 4 compartments and pop open top that rotates)

·         Breastmilk storage bags

Changing:

·      10 diapers per day per baby average (I bought 33 packs of Huggies and Pampers preemie to start with and will have family bring me more if needed) I also brought 1-2 wipes per diaper.

·         cloth diaper

·         portable changing pad

·         Travel baby lotion/shampoo/oil

·         Desitin & other samples of baby toiletries I got from the pediatrician's office

·         Diaper toss bags

·         Waterproof pads

Misc:

·         Puj baby bathtub that folds out flat

·         Mosquito net crib featured in an earlier post. The mattress from the pack and play is now out of the question because it takes up too much space.

·         Dreft detergent-powder

·         clothesline

·         USB drive to port documents

·         Mult copies of all listed docs on VISA Process

·         Camera with SIM cards and USB and extra batteries

·        2 Moby wraps
·         Baby brush and nail clippers
·         Nasal aspirators
·         Thermometer
·         Medicine dropper syringes

Clothing:

·         Layettes (This means the pile of preemie clothes)

·         Mittens

·         Hats

·         Receiving blankets

·        Muslin swaddle blankets

Me:

·         Sarees/cholis (I'm bringing thin silk ones for space and can buy some there if needed)

·         underwear
·         Rubberbands to hold my hair back

·         Makeup

·         Computer

·         Cell ph & chargers

·         Credit cards/ID/passport

·         Deodorant

·         Small shampoo/conditioner

·         Toothbrush/paste

·         Razor

·         Most essential Baby reference books/info sheets
·         Sleep meds to help me get on India time and sleep on the plane when I'm a bundle of nerves

·         Pepto & diahhrea meds

·         Sunglasses

·         Converters for plugs
·         Inflatable neck pillow

·         Malaria meds (but I'll stop when I am producing breastmilk for babies)

·         Earplugs

·         DVD player and P90X so I can work out my stress in my room (if I can fit it in the suitcase)

·        CASH (less than $10,000 or you have to declare it with customs)

Documents needed:
·         Proof of the parents' identity and citizenship, such as U.S. or other passports.
• Child's original birth certificate issued by the local authorities (including English translation, if applicable). The birth certificate must include the name of the child.
• Two (2) photo studio quality photographs of the child, 2" x 2" in size and taken against a light background. The child must be facing forward with his/her ears showing and eyes open
• Prenatal and hospital records (e.g., ultrasounds, prescriptions, evidence of pre-natal doctor visits, hospital discharge documents, vaccination card, etc.)  Can be provided by Dr. Patel/Dr. Hitesh, but print of all documentation you got over email and in case some of the document is not provided during baby pick-up
• The parents' marriage certificate, or other proof of their relationship prior to the child’s conception. (This is not required if the mother of the child is a U.S. citizen.).

·         Former passports

·        Proof of residency docs