Coming Home

It wasn't easy. It never is. But she is finally home!

Over the weekend before Christmas I enjoyed my time with Vivek, knowing things would be changing a lot soon. We had a lot of fun and he gave his jumper and musical playmat a test run and seemed to enjoy himself, even if he is a little small for it. He is all about moving around and standing up and now jumping up and down and making noises. 

Don't let the blank face fool you. I'm having fun.









We also had a Christmas photo shoot, and I'm including the best selections.

 



Then we joined my husband's family for a wonderful Christmas celebration in Arlington. Dadoo and Dadima were over the moon to have him at their home for the first time, and the babies got a fantastic pile of presents!

 

Thanks to Dadoo and Dadima staying with our son we were able to room in on Christmas Eve, and all through Christmas day and most of the next day. Princess created some drama that delayed her discharge a day. Typical. She wanted to remind everyone who was in charge.

For some reason in my head I expected Vinnie and I to have a magical night bonding with our baby girl again. I think the only thing that was magical was waking up to white Christmas. The rest of it was incredibly stressful. I have been at the hospital a lot. But it wasn't until my husband and I were tasked with all the rigorous schedule of feeding bag formula changeouts, bag replacements, wound care, medication administration, breathing treatments/CPT, and 2-3 bottle feeds crammed in between that it hit me how hard it was going to be. It wasn't so much all the things required for her care that are daunting, but how in the hell I'm going to fit another baby and any sleep into that mix at all and eventually come back to work. I promised myself I would give it a few days to settle in and see how we can make it work.

Princess did well most of the time, but had a few of her epic meltdowns thanks to her temper and a few poopy diapers. This sets off her reactive airway disease and causes her to wheeze, but usually a slightly early breathing treatment and a little time and her lungs settle back down. 30 minutes before the doctor returned to give her final clearance to take her home she had a meltdown and this time her breathing sounded like rice crispies. I already knew before the doctor walked in that she would not be going home that day. But I wasn't upset. I knew we needed a better plan to bring her home, and had been wanting oxygen at home for just such circumstances for over a month. This time the doctor agreed, as it was the first event like this she had seen. She put her on a diuretic and sodium chloride as well as upping her calories to 24 so she will take in less fluid. Hopefully this will keep her lungs from getting all wet from an RAD episode.  She didn't think insurance would approve oxygen initially, but I argued that we were treating it like an all or nothing proposition when her needs are episodic. My father saved the day and had an oxygen concentrator that he had never used from his aortic aneurysm two years ago, so I drove the next morning after working Christmas night through lots of icy roads and brought it to the hospital. The insurance company fight can be postponed.

 


















I finally brought her home the day after Christmas around 3pm. I got to ride in a wheelchair with her in my arms just like all the other Moms when they leave the hospital! Thanks to a gift card from my wonderful friend Madira, she wore her very special pink bunny sweater dress I had purchased months ago on the third day of her hospitalization when I finally started to believe wholeheartedly that she would survive. It was a big turning point, and I've kept that outfit and looked at it often over these months as a promise of the wonderful day that would surely come eventually. It did!  I added to the ensemble a pair of ruffled pink tights that used to cover up my tiny bottom in 1977, and I have a pile of my old baby clothes my Mom saved for her to wear now.

 


















I had barely slept in two days, but was so happy. And I don't think it is just my imagination, but she seems so much happier here too. Just seeing the look of amazement and smiles on her face when she looked at the toy arch above her sleeper bed melted my heart. This is where she belongs.

There has been no time for all the photo sessions I dreamed of, but hopefully soon I can get some post-Christmas photos that make it look like Christmas and some family reunited shots. Right now I'm just lucky to get a shower every few days and a meal every 8 hours.  It is hard. It's really, really hard. I hate when they both cry so hard and I have to pick one, especially when her's is so heart wrenching and causes a wheezing episode. But when he needs a bottle and she just wants to be held, what choice do you have? I'm hoping the Podee bottle I ordered from Amazon arrives any day now and might help with that situation.

My calendar is full of doctor appointments. She has at least one a week, and will follow up with about 5 different specialists. There are tons of calls from medical supply companies shipping us equipment. My living room has an IV pole, oxygen machine, and nebulizer machine in it. I can now disconnect a G-tube and pause a feeding pump while half asleep to go get her diaper changed. Home health nurses came by for one of the twice weekly visits, and within 5 minutes of talking to me they were so impressed with my knowledge, skill, and setup in caring for her that they said "You don't need education and monitoring, you need help!" I told the nurse our entire story over the next two hours and brought her to tears. She promised to do battle with the insurance company to get us a different kind of nursing care during the day to help me sleep, though the nurse can't care for Vivek so I'll still sleep when he sleeps. We'll see what happens. I'm trying to exist day to day...no...hour to hour. It is very hard. But as always, after a few hours sleep (Thanks Vinnie and Subhash and Savita) and a few baby smiles it all feels so very worth it. I know it will get easier as they both age and her medical needs resolve, and I do my best to enjoy every moment until then.

Day 42: Discharge day!!!

This day has been absolutely overwhelming!  I cannot believe they are actually at the hotel and mine to take care of. I'm feeling outnumbered even though at the moment there are 3 of us (including the professional nanny) and two of them. My mind has been racing all day trying to stay on top of what to do next. I'm sure if I was at home with all my stuff and perfect setup and devices and gadgets and phone and resources and nurse line AND HUSBAND I would be much more relaxed.

The hotel staff was nice enough to have four dudes help carry our stuff to our new room this morning so I got it set up to my liking. It isn't home, but it will do for 6 days.

I'd seen others discharged so I knew it would take a while. First you talk with Dr. Kothiala and get basic discharge instructions, and since I have been around here for a while they mostly consisted of what meds and supplements to administer and when. She also wrote me a prescription to fill in case I needed it for a few things. Figuring out when to give what dosages of the calcium, iron, folic acid, multivitamin, and domperidone drops took some doing but I wrote it on some hotel stationary and coordinated it with certain feedings to make it part of the routine. We have to go to the retinal surgeon for follow up tomorrow and I'll fill those prescriptions. Thursday we have to pack for the friend of Vinnie's cousin Manu who is picking up less essential luggage and shipping it to Delhi for us so we can fly light. Then back to Dr. Kothiala on Friday for follow up and to get two letters for permission to fly in case Tara is under 2kgs and a letter to their new pediatrician/neonatologist in Delhi "introducing" them as well as copies of all her medical records for the both of them.

After seeing the doctor, I had to go upstairs and pay surprise medication fees, then some more lab fees downstairs. I ran to the hotel with all their stuff and supplies and the two wooden risers they loaned us so that they can sleep with their heads elevated. We'll return the latter before we leave. Then back to the NICU after I secured a tuk-tuk to take us for the very short drive to Rama. Then we went in to see Dr. Kothiala for one last checkup before we left. She was tickled at the lovely "graduation" outfits I had for both of them. I bought them special at a store that sells doll clothes! She thought it was so cute she took a picture.

Then the short walk to the tuk-tuk with precious cargo. Mom had us stop at the Ganesh mandir in front of Rama just outside the elevator and offer blessings before we walked in.

Once inside the room I laid them down and tried to warm them up because I can't seem to figure out how to make the AC not blow so darn cold. Priyanka figured it out later for me. I changed them out of their NICU outfits into a little monkey outfit to make Mom happy and a pink ensemble for the little lady. They looked adorable and I was thrilled to have them out of their boring Indian tie on outfits they have worn every day up until now.  I promised Vivek to never dress him in pink again. I didn't do a very good job dressing them but I know it will get easier. I hate to admit my hands were shaking a bit because all the nerves were settling in. The silence of no beeping is shocking to the system. They seem to have adjusted better than me.

My little monkey man



Tara loves her new girly clothes




Tara trying to leave and go back to NICU

So none of my nightmares came true where I couldn't make a bottle. We got them right back on the NICU feeding schedule, and until they are bigger we'll stick with 2 hr feedings. I'm so glad my brother gave me those small bottles because I could bring so many that I don't spend half my day washing and sterilizing. I have changed Mr. Vivek two times already today, once because I didn't catch his pee mid diaper change...again. The other one was due to a diaper leak.

The silence between feedings is deafening. I keep thinking I should be doing something. I can't fathom sleeping but I know at some point I'll have to. So far the apnea alarms work great, and I've had a few false alarms but learned how to attach them to the diaper better. I know it is the only way I'll be able to sleep.

So many thoughts race through my head and my confidence is like a roller coaster. But I look at them and bond in a way I haven't been able to before. They are really mine. I keep repeating that but it still seems so impossible that the dream is alive and happening right now.

It is now 11pm and I'm going to try to sleep. Tara just had the oddest feed I've seen so far, and just about spit all the milk across the room. I've never seen her refuse to suck like that. She was NOT having it but we managed to get some down her. I've also never realized up until now how much these little ones toot. It turns out with all the beeping monitors and alarms in the NICU I couldn't hear it before. So I'll sleep now. In theory...