Swallow study results!

Miss Tara completed her swallow study yesterday and passed, so no G-tube or Nissen fundiplication surgery. As if I had any doubt! As expected she has been aspirating milk this entire time, because the barium swallow did show "penetration." It is not severe, so they are able to thicken her formula to a nectar consistency with 1 tsp rice cereal per 1 ounce of formula.

I'm so happy to finally have an answer to the questions of what has been going wrong this entire time that kept putting her back in the hospital, and to confirm that it is what we thought it was. I'm still frustrated this couldn't have been identified earlier in India, but even if I'd been more sure it was the issue and pushed harder I'd be willing to bet they still wouldn't have given us the swallow study I kept asking for.  It sucks when you don't have the power that you do here. It is hard not to beat myself up, because I wonder if I should have just thickened it with the rice cereal I brought for that purpose on my own and realized the doctors were wrong. It just seems so much more obvious  now that was the problem all along, but then again hindsight is 20/20.

I'm also more certain with each passing day that she was always a little tachypneic and they didn't see the respiratory rate as so much of a problem as they do here. I've been watching old videos of my babies and counting their breathing by studying their chest and necks, and the rate is often 20 breaths above what is considered normal despite high oxygenation levels. They shouldn't have to work that hard to get there, and perhaps that was why she always slept so much...she was exhausted. When this is all over I plan to write a long email to Dr. Kothiala explaining Tara's complications since discharge and recommending that they take a harder line on respiration rates and recognition of feeding issues. Dr. Kothiala I know will listen, but trying to say something to Sir Ganga Ram I know would be futile.

She has had two bottle feeds today, one of which I was able to give her! She did great but they are giving her a 10 minute time limit because she tires out due to her respiratory status and that can affect her ability to regulate swallowing and sucking and breathing. She can finish 1/2-3/4 of the bottle in that time before they give the rest via her NG tube, and from what I can tell so far it helps her not to gulp like she was before. They will keep with the bottle feeding and see how it goes, and if there are no signs of aspirations she will get to feed more and for longer periods of time. As an added bonus the nectar consistency flows at a perfect rate through a standard flow nipple...which we have a ton of and is the same type my son uses. So no worries now about buying more nipples and getting them mixed up with each other by accident!

Everyone is still non-committal on discharge, but I'm starting to think that it is unlikely she'll be home by Friday but maybe over the weekend. I have to have the prescriptions in hand before I can take her and I'm sure they'll be impossible to fill Thanksgiving day and hard to fill the day before. They have to do some exit counseling stuff, and possibly a car seat study. I also need to carve out time to talk to the social worker about filling out Early Childhood Intervention paperwork to get them in the program for developmental therapies. Plus the home health folks have to do a home visit to train us in the breathing treatments, and that scheduling could be a factor.

But after I've had a few hours of sleep it doesn't seem so bad. I'm just happy to have her home soon. Also someone awesome at work took the bullet and took my overtime mandate Thanksgiving Day, so that extra pressure is off! But the biggest reason I have a smile on my face is NEKKID BAYBEE!!! I walked into a sponge bath scene tonight and was thrilled to snap a few photos that she will hate me for later. She is 7lbs and 13oz now, and working an excellent little muffin top.

Vivek is doing well and his daily colic episodes at 1:45 am are beter some days than others. His feeding habits have shifted but my pediatrician's nurse line tells me not to worry and every month I will notice feeding changes. He will totally refuse a bottle now if he is really sleepy, and at least once a day seems to prefer a four hour nap before his bottle. He mostly makes up for it at other feedings.

 


















Interesting news in India below. As developed as India is, it just goes to show how backwards things still are there. Every day now I have such a deeper appreciation for the sense of justice and belief in civil rights that is part of American culture, thanks to the protections of our legal system and the Bill of Rights. It ain't perfect, but it is a far cry from getting arrested for liking something political on Facebook!

http://newsfeed.time.com/2012/11/19/indian-woman-arrested-over-facebook-like/

In India, the world’s largest democracy, civil rights are running up against the world of social media. On Monday police in Palghar, some 100 km north of Mumbai, arrested 21-year-old Shaheen Dhada for criticizing a traffic shutdown in a Facebook status update, the Mumbai Mirror reported. Another woman was arrested for merely “liking” that status update. Both women expressed their discontent with Mumbai being shut down for the funeral of leading Hindu nationalist Bal Thackeray, who passed away on Saturday at the age of 86 — an event that brought India’s financial hub and most populous city to a virtual standstill. The two women questioned whether the bandh, or shutdown, was necessary. Dhada quickly deleted the comment from her Facebook page and apologized for it. But that didn’t stop a mob of about 2,000 Thackeray supporters from ransacking her uncle’s orthopedic clinic in Palghar, according to the Mirror. Thackeray, founder of the extreme right-wing Shiv Sena party, has been widely criticized for inciting religious hatred and violence.

In America when even small things go wrong, you have a power here to do something about it that you don't have in India. It's not just because of the law, but because of the cultural belief system in justice that stems from it. My co-workers told me that they were surprised to read about stuff in my blog and told me "The Emily I know would have throttled the nurse for doing that!" But I didn't because I knew it wouldn't do any good or change anything for that individual, and trying to go up the chain would have even less effect. I used to think mostly negatively about our liability obsessed culture, which bears the fruit of too many frivolous lawsuits. But I took a lot of positives for granted. I appreciate more now that people do the right thing in America more often than they would otherwise because they are afraid of legal consequences that don't exist elsewhere. But I also now think our laws contribute to a culture that believes in integrity and makes us people who make better choices as individuals and a society, even when adverse legal consequences are not really practical to the situation.

I am thankful that this extended trip out of my country gave me a deeper love for my homeland, and a renewed dedication to my chosen field of law enforcement.

Baby cologne

The other day I came home from visiting Tara at the hospital to find my mother holding Vivek who was freshly washed and combed and looking ever so suave. She said she looked for but couldn't find any baby cologne. I have been thinking about that and laughing at the thought ever since. I present to you the new baby cologne spokesmodel:

I have been better about taking pics this week, despite the fact that it has been hectic. Vinnie has come down with a wicked case of strep throat and has been exiled form the house. Once again it is my Mom and his parents to the rescue, including overnight stays while I go to work and making time for me to visit Tara.

I've taken a few pics of Vik being fussy this week, since that has been his M.O. But let me tell you, that Dr. Karp Happiest Baby on the Block stuff WORKS! It is making me worry a bit because if he demands this much attention when Tara comes home it will be problematic to say the least. Twins are hard, but I've never been so happy meeting any challenge.

 

I finally ordered a bunch of Similac Neosure on Amazon and my free cases of the ready to feed  arrived from turning in my Mother of Multiples form with the copies of the birth certificates. Stocked up! I have so many Similac coupons, but you have to buy one at a time for maximum savings and that is a lot of trips even if I found a Buy Buy Baby and Babies R Us right next to each other near the Galleria.



Check out mah hand!




















As for the Princess, her new nickname at the NICU is "Diva." It's because her cry is so heart-wrenching, even if it just because her pacifier momentarily fell out. She has all the nurses trained to be at her beck and call for binky duty.  Not a lot of changes this week, we are just trying to get her as healthy as possible for her swallow study. You can tell how much she misses eating, so looking forward to when she is back on the bottle next week. She is doing well but her lungs still aren't as clear as they could be. However the swallow study has been rescheduled for Monday. We have some hope she might be discharged by Thanksgiving, but only time will tell. She is getting her breathing treatements every 3 hours, but they may change it to every 4 soon. She loves the CPT where they pat her firmly on the back, but she hate hate hates the breathing treatment itself. It is funny that after almost a month of not changing her diaper, how ridiculously happy I was to change her nasty poopy diaper.

 

Accentuate the Positive, Eliminate the Negative

I mostly manage to stay positive but I do have my bad days. Today was a bad day. She had been off oxygen entirely for 24 whole hours and doing well with pulse ox in the upper 80's to mid 90's. But when I arrived tonight she was back on oxygen because she was still working too hard to get there and they don't want anything to interfere with her swallow study. They also reduced her breathing treatments at the same time, which may be a double whammy instead of a quadruple like the other day, but it was still enough to keep her from kicking her O2 habit. Progress is slow at this point, but it is still progress.

If she didn't need a swallow study she would probably be home already on portable oxygen, but it is too important that we get a proper diagnosis and plan to prevent future problems. Her swallow study for tomorrow was cancelled and will likely be rescheduled until next week now. They have given her Lasix to help purge out any excess fluid sneaking into her lungs to see if that helps.

My hope of having her home on Thanksgiving is drying up, but hopefully so are her lungs. I find myself irrationally upset about the fact that I missed her wearing the super cute pair of tiny pink jeans with the heart on them for the first time, and I missed her wearing socks for the first time. That and I just miss her. I'm missing out on the majority of 3 weeks of her young life so far and that really sucks.

And now my husband is worried he might be sick and so we are on full alert getting alternative care for Vivek set up and deciding if one or both of us should take off work. We are also having to resterilize what has been touched by him in our house, though my husband is wearing latex gloves to help reduce any contamination.

Stop the ride I want off.

However, despite having a bad day I am cognizant that the greatest gift all this has given me is perspective. Positivity is definitely a state that must be maintained by keeping perspective on the bigger picture, which is easier in some situations and on some days than others. And there are times you will fail dismally at it, but that is okay as long as you pick yourself back up.  I keep perspective in a lot of ways, but the long and short of it is knowing "...it could be worse." 

"It could be worse..." works most of the time. It even works for the people that I've read on other blogs who are in situations so bad with their preemies that they are my "worse." But they have been around the NICU block long enough to see folks even worse off than they are. Instead of "why me" they are thinking "why them?"

But as one of my favorite bloggers points out, "Your cancer does not heal my broken back." http://www.jennepper.com/2011/11/my-big-fat-nicu-experience.html You can maintain a positive outlook and keep things in perspective and still have a crappy day and complain about how something sucks.

Bernadette from Rasta Less Traveled writes a very eloquent piece about the gift of perspective that such an experience gives you here: http://www.rastalesstraveled.com/2012/10/a-broken-hot-water-heater-sort-of-day.html

Some folks write gratitude journals. Back when I worked suicide hotlines that always kept me in a positive place. Right now I read stories and blogs of preemie parents who have been through so much more than I have and it keeps me inspired.

There exist what I like to call "Sub-Clubs."  I have my gold membership from The Infertiles Club for putting in 8 years, and folks like me don't want to listen to moaning and groaning from part-timers who only spent a year trying then had a successful first IVF attempt that was covered by their insurance.

But the truth is that I am in a sub-club of infertiles. I am friends with a woman with my same disease who lost her uterus because her endometriosis was so debilitating and was spreading up into her upper torso and lungs, and she spent over a year on the couch recovering. I met a woman in India who had IVF at a top clinic in London and they ruptured an artery and she stroked out and almost died on the table. It took her two years to learn to walk and talk again. And some folks have spent twice as long as I have suffering from infertility, and many of them endured it far more gracefully than I ever managed to. I wish I had followed their blogs back then and perhaps I would have managed a little easier, but I didn't really know what a blog was I'm ashamed to say.

I have spent over 3 months with one or both babies in the NICU. But  there exists a sub-club of NICU short timers. Watching some of these "woe is me" 2 weekers with their giant 6 pound preemies born at 35 weeks moping around like their world is caving in on them is just annoying. Some of them whine about getting cheated out of their "birth plan" and how they didn't get to see their baby right after it was born. Me...I had to wait a week and travel across the world first and never got to even carry them or feel them kick.

But I'm in a sub-club of NICU veterans too. There exist so many preemies and parents who graduated from the NICU to the PICU. They never left and never will unless it is to a specialized hospice care facility. I've read about scores of folks who had babies born heavier and later than mine gestationally with far worse problems. I met a woman in the waiting room in India who lost one twin born at 27 weeks slightly smaller than my daughter, and the other was failing to thrive. I'm sure I am annoying to them, even though I try not to be.

I remind myself just how lucky we are to still have Tara at all every single day. In over a decade at 911 I have delivered instructions for CPR hundreds of times over the phone. When you have a documented life save you earn a little lifesaver lapel pin to wear proudly. How many do I have? A big fat zero. It's not because I'm not super awesome at giving CPR instructions over the phone. It's because CPR is only successful about 6% of the time without an AED (defibrillator/shock box) and 95% of the folks rescusitated die on the way to the hospital. So many of the folks that called me over the years simply found their loved one too late but had no way of knowing how long it had been and that there was no chance of saving them.

Out of the hundreds of times I've told someone how to give CPR and I have no saves that we know of, but the one time I actually do CPR it's on my own child and she survives. If that doesn't keep things in perspective I don't know what can.

I'm grateful that my daughter is so well taken care of when I'm not there. She is in a top notch NICU and not only does she get great medical care, she gets a nurse dedicated only to her care who will hold her for hours and love on her when she cries.

I'm grateful my son is as healthy as he is and can shake the walls with his mighty little lungs screaming at me to hurry up with that bottle.

I'm grateful that this experience has taught me just how much having preset expectations is a recipe for unhappiness, and enjoying things the way they are and letting life surprise you is a much better way to live.

I'm grateful that I'm better now at quickly changing my plan midstream when it doesn't seem to be working out the way I'd hoped. I'm starting to think my children are going to teach me far more than I teach them.

I'm grateful that I'm able to provide everything that my babies need to thrive, and am not hanging my diaperless baby from a makeshift hammock made out of a burlap sack on a tree by a highway underpass in Gujarat as I beg for change from passersby.

So in short, this Thanksgiving I'm going to be far more thankful than I've ever been...even if one little turkey is missing at the table.

Gassy with a paci

My daughter is seriously addicted to the pacifier. The NICU nurses tell me everything is okay until that pacifier comes out of her mouth. She wears the rubber down on those thingies then spits it out and screams for another. She LOVES her paci. I'm thinking it is a sign of the trauma she has been through that she has developed some sort of oral fixation. She has impressed me with a trick: when the pacifier comes out she turns her head the direction it fell out and tries to suck it back up. I thought object permanence took a while, but when it comes to her pacifier she is determined to find out where it could have gone. As far as my son is concerned it is gone and never ever coming back and it is time to wail to the heavens in misery at the horrible hand fate has dealt. Woe! Woe I tell you!

Please take note of the lovely baby blankets in the pic above and below lovingly knitted by my fabulous friend Marga!

In other news the nurses tell me my daughter cries after she toots and not before. They tell me my daughter is so gassy it is unbelievable, and they stink to high heaven. They will smell it from the doorway and glove and gown to go in and change her diaper, only to find it is clean as a whistle. A whistle that toots a lot.

They brought in a bouncy chair and I missed her first time in one, but I'll still be the one who gets to introduce her to the baby Bjorn (Thanks Todd!) and the swings. She seems to enjoy it. I have to say it is wierd to walk in the hospital room and see her down so low to the ground instead of in her crib.

I did freak all the nurses out the other day because I walked up to the room entrance and saw no baby in the crib, and asked where she was. The nurse was absent too. Several nurses were scrambling to figure out where she was. I tried to calm myself by assuming she had to go somewhere for a lung scan perhaps. Then our nurse shows up and says "What do you mean? She's right there." I look closer and I'll be darn it there was a baby after all. She was camouflaged by a a perfectly flat wrapped top sheet that matched the other sheet. I swear it isn't until you got 3 feet away at the perfect angle you could see there was a tiny lump of baby poking out the top. In my defense a nurse had walked up to the door too and not seen her. I felt bad for freaking everybody out.

Vinnie and I have been doing a great job at this parent thing if I do say so myself. It has been tough going back to work and he and I doing the sleep deprivation thing, but we are getting into a manageable routine. I am getting more used to sleeping during the day when he sleeps, so that is making my nights more survivable. My coworkers are alarmed by just how much caffeine I have ingested in one sitting but I promptly combat their judginess by politely responding "Shut up I have twins." Catching up on sleep over the weekend is marvelous, and I have never been so happy to curl up into my bed full of happy thoughts of how blessed I am. I still can't believe I got two babies, and a sainted husband who offers to take my son to the pediatrician on four hours of sleep so I can get four hours of sleep. I received a compliment today (I think) that I didn't look like nearly as much of a zombie as expected. Let me just say I did not know it was possible to be this happy and this tired at the same time. It turns out that makes it so much easier to bear. Every other time in my life I was sleep deprived I was just bitter and bitchy.


Vivek salutes in his sleep those who served our country this Veteran's Day

It's still hard getting to see her only 2 hours a day on average, and I worry she is forgetting me. (Sniff sniff) But fortunately she is getting lots of attention, and she has gotten several grandparent visits and another weekly visit from her Daddy. Weaning her off oxygen and steroids and breathing treatments has been very successful but the last few steps are taking a while. The rhinovirus is officially gone and she can possibly go home this week, but will likely be on oxygen for a bit and we'll have to administer breathing treatments.  I am okay with that as long as I am home or Vinnie is awake because he sleeps too deeply for a pulse ox alarm to wake him up if her nasal cannula comes out. That means as long as she is home on oxygen I'll need to take off of work, so that is the next thing to discuss with our doctor to figure out our immediate future. It also looks like my attempts to get the doctors to approve a swallow study has been successful despite one stick in the mud doctor who felt it was unecessary. Because there are so many doctors that rotate I just play Mommy against Daddy and convince another doctor of my argument. I'm madly Googling terms like "silent reflux" and "microaspiration" so that I am educated enough to advocate for my daughter and can recognize any subtle signs of illness upon her final return home (we hope). I am gonna burn that $10 per call 24-hr Nurse line my pediatrician has up if she so much as looks at me funny.



Vivek had another weight check since we switched him over to 24 calories instead of 22, and he gained the desired poundage and impressed the Doc. He did not vomit all over the entire place this time either, so I'm sure that helped the numbers a tad. He got to meet his Papa for the second time also and hang out for about an hour. I was a sucky hostess because I almost fell asleep sitting up at the table mid sentence during his visit.

Another huge thank you to my friends from church who have continued bringing me meals, and my work friends who purchased a ton of food gift certificates. That is seriously what is making it possible to keep up this crazy schedule. For the first time since I got home from India 3 weeks ago I did manage to carve out 30 minutes to go to the grocery store and get some milk, but if it hadn't been for all the help from friends I'm pretty sure I would have starved to death or broken into my son's Similac Neosure stash to stay alive.

I have developed a slight case of occipital neuralgia. Or at least that's what I think it is. What? I'm qualified to diagnose myself. I have my Google M.D. Occipital neuralgia is strong stabbing pains at the base of your skull intermittently, caused by pinching a nerve from repetitive neck strain. In my case it is caused by turning my neck down and to the left constantly to stare at my babies while I hold and feed them. I have also gotten my first grey hairs on the top of my head, as discovered by my mother. I am absolutely 100% certain that this NICU experience has given them to me. I wear them with pride. Until my next dye job anyway...

We'll conclude this post with my husband's video of the amazing Vivek and his new tricks. Cause everything he does is like...so absolutely AMAZING! So freaking cute and surely nothing that any baby in the history of the world has ever done before...