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...

Keep calm and carry on

So things have been moving along. I'm trying to enjoy being a Mom but it is hard to enjoy it fully when my beautiful daughter is missing from the daily picture. But I'm forcing myself to take pictures again and try to celebrate the little moments. It is funny to see how much he loves the glider and the swing. He seems confused yet somewhat pleased by the motions they make.

Today I got a lot done and sorted through some clothes donations for the princess so that she may wear pink and not just the very few gender neutral items I had or be stuck in boy clothes (Thank you Cristina!). I actually risked taking a bath today and by some miracle he slept through it. I also finished unpacking from India FINALLY, and figured out how to use our stroller. That means that Vivek and Ralph and I all went for our first walk together up to the duck pond next to our house for a 15 minute jaunt. It was nice having him out in the sun and fresh air for the first time, and though he slept through it I'm pretty sure he enjoyed himself.

Ralph didn't pull on the leash for the first time I've ever seen, and I hope it is because he seems to be getting the picture that the stroller is in the lead and the baby boy is the new Alpha in this family. He is giving the baby a wide berth and waiting for permission to approach. He at times seems to be guarding the baby, and gets very concerned and seems distressed when he cries. The only issue we have so far is him pulling off the blankets and burp cloths to the ground on occasion, but I'm pretty sure it is because he smells the formula/vomit and that equals food to him. Our dog is a little piglet and will eat anything that remotely smells like food. After many failed attempts at discovering a bounty of dog treats hidden inside a burp cloth, this seems to be abating. They seemed to be getting along during Vivek's first time on the playmat.

 

I spend at least two hours a day with Tara, but it feels like just a drop in the bucket and it kills me everytime I leave her. If I didn't have to care for Vivek I would spend all day there everyday. Especially now, because I can work miracles to calm her when the nurses can't so holding her is of great benefit to her health. She still gets agitated easily, and then she cries. When she cries she coughs. When she coughs she can't stop coughing. Then she starts gagging out her feeding tube and bronchospasming and can't breathe.

They put her back on steroids to help decrease the imflammation in her lungs. She is making progress daily despite the insult to her lungs still being obvious in her breathing and behavior. They weaned her from 6ml oxygen on the nasal cannula down to 3mL in 3 days, which are huge strides forward. She has to be a .3ml to begin bottle feeding again. Given that we were told she would still be on a ventilator at this point this is stupendous progress!

I am so incredibly grateful for the meals that are being brought by my friends at church, the Metrocrest Mothers of Multiples club, and work friends. It is the thing that is making this marathon possible and giving me enough time to sleep and take care of Vivek and see Tara. Time and money are running out so I decided the best thing was to go back to work Sunday, and will take another week off when Tara is finally discharged. It is a little daunting but we have a plan that will get us both enough sleep and family is helping out four days a week so that I can see Tara 3 hours a day. Again, having the meals ready to go is saving a tremedous amount of time and preserving my sanity and I am so deeply appreciative. Thank you!