Wednesday, February 13, 2013

The First Three Weeks as a "Stay at Home" Mom

If  any preemie Mom out there postulates the brilliant idea of setting two doctor/specialist/follow up appointments a day for two weeks to "get them out of the way" I urge you to read and follow the below instructions to the letter:

1. Go into the bathroom and look into the mirror. Gaze deep into your own eyes and silence your mind.

2. Slap yourself as hard as you can.


4. Repeat as necessary until you cancel over half of the appointments.

I would offer as a general rule: Any goals you have planned on any given day, if you accomplish anywhere near to half of them...consider your day a roaring success!

It's not to say the last three weeks were without many highlights, and pictures speak louder than words so I'll share a few of the bounty  I've taken amidst the chaos.

The beginning. The peaceful image I pictured stay at home Mom-dom to be.

Reality sets in. The unecessary wardrobe changes to accomodate the piles of cute clothes and picture sessions to make up for lost time are great. The 2-3 episodes of 30-45 minute inoconsolable crying sessions per day due to severe gas pain from G-tube continuous feeds with little ability of vent are...not so much.

Yet despite the difficulty of straddling the line between Mom and Nurse, I think I handle it pretty well and find moments of joy amidst the regimented schedule of care and tasks and rapidly increasing number of doctor appointments.  I never feel bitter or deprived of "how it should have been..." We go for our first jaunt in the jogging stroller as the weather is improving, because I am determined that no feeding pump or oxygen tank should make a baby or her mother a prisoner under house arrest. They love the fresh air and her R.A.D. does not react to it! We bought this house for the lake and miles of jogging trails around it after all...
We have a few visits from friends and family.
Agemate Armaan and his wonderful mother Preeti
(Vinnie's cousin) come visit and we bond over
babies now that our individual NICU journeys are
finally over.

Aunt Jan, a lifelong asthmatic herself, helps with one of four daily breathing treatments.

Cousin Amber and her beautiful daughter Naomi with Tara

Cousin Amber, Naomi, and Vivek

Vivek playing with my bestie Erika

It becomes rapidly apparent that my son is a huge flirt. And to make matters worse, when he occasionally gets a glance at the TV when I'm not careful, he is typically trying to get a view of a pretty girl it seems. I'm already worried...
Thankfully we have a great system going now that involves me going to bed early and Daddy staying up later. There is a changing of the guard around 2am and we both wind up getting enough sleep. They sleep through the night, though we have to do a breathing treatement and a feeding bag change, and wake him up for at least one bottle as we have upped his calories and are trying to get more chub on him. She has the G-tube advantage though, so they actually dropped her calories since she is getting so pudgy!
We find occasional nap time is in order....
...especially when on rare occasions our "sleep throught the night system" fails. Thank you again, early teething fairy!

But every morning at 8:00 there is a flurry of activity with Tara's medical needs and Vivek's hungry tummy and piles of diapers and mixing fresh formula in different concentrations for each baby.

Mornings start much earlier than that most of the time because I usually have a Dr. appointment at 9:00am and have to rush to get everything done and packed and get babies loaded up!

Thank God they love car rides and sleep through them. I've gotten packing these babies up down to a science. The stroller all packed up is a monstrosity that defies description, and barely fits in elevators.
But the view on a foggy morning on the greenbelt that surrounds our house as I load up the car with all the gear always gives me a moment of peace.


Meanwhile the babies are noticing each other more and more. They are still too young to interact much. Vivek is in a hair grabbing stage, but fortunately I made it to the playmat just in time so the sibling relationship is still intact.

They are both teething early. Apparently they don't like to do anything in the expected time frame. Teething sucks, especially when your mouth is too small for teething rings and you don't have the coordination to hold one up to it anyway. We are coming up to a month of bad teething symptoms and still no teeth. We had four days were Vivek fought against his bottle, and it took five people to finally get one down him after 9 hours and me nearing panic. Turns out I handle all her problems well, but when my boy throws me for a loop I fall apart. Apparently one baby with health issues is all I can handle, but thank God for family support!

They constantly nom on their hands now, and one of these days I think Vik may get his entire fist in there. He has also discovered his hand and loves to stare at it, but only his left one. I'm waiting for him to figure out that there is one on the other side. He has now learned to place his hand gently on the bottle instead of forcefully grabbing it and knocking it out of his mouth then angrily screaming at me like it is my fault. And unfortunately she has also gotten defter at being grabby and handsy, in the sense that she can now play with and push away the mask and tube during her breathing treatments!

Tara is all about sucking on her index finger constantly, and lost interest in the pacifier. She likes to wring her little hands together. Lately she is all about lifting up her dress with one hand and sucking on the finger of the other. My usual view of her as she sleeps pictured below:

Unfortunately things fell apart during Vivek's days of bottle refusal, and suddenly Miss Tara has develped a bad oral aversion out of nowhere. I don't know if she has just figured out that it is work and the G-tube is easier, or if her finger now satisfies her craving to suck. That has me more frustrated than anything, so now we have total bottle refusal and upping feeds in a few weeks will now involve a therapy team and feeding clinic. Sigh. I'm a little down about that development, because she aced her swallow study (as shown below) and her feeding clinic eval by the speech therapist was glowing, even though she was having a bad RAD day and was pretty tachypneic. She was cleared to use no thickener and up feeds as soon as her G-tube feeds are weaned down to bolus in the coming weeks. We have started that process, but it came a little too late so here's hoping she learns to love the bottle again soon! The speech therapist comes on Monday, and until then we are trying to remove all negative associations and "play" with the bottle and nipple.

Miss Tara had 7 professionals gathered around waiting on her, but she had some gas and they started to call it off. A few toots later we were back on and everyone rushed around to re-prepare the test. It is rather funny to see so many folks all waiting on the whim of a baby!
I manage a mini-photo session on one of the few days we had only one appointement.

"Oh...hey there other baby!" Have you been here all this time?"

They can both sit up now with a little more support, so they are able to get some time in the Bumbos now, though she gets tired sooner. Tummy time is still a battle, despite trying every iota of advice from friends and all the developmental specialists who have finally had a chance to assess them both. Getting 25 minutes a day is so hard when she would rather socialize than exercise and 30 sec-2 min increments are all we can manage before she hits meltdown mode.

Her fine motor and expressiveness is slightly behind, but is all explainable from her hospitalization and not a developmental defecit from her prematurity. I was told that it is more like she is starting at month 1 from the date of hospital release, so not to worry. She qualifies for ECI (Early Childhood Intervention State services), but he tested at or above age level in all areas and doesn't even qualify for the program!  We are relieved and optimistic about the future. But Miss Tara is so interested in people and not toys and  isn't the natural wiggle worm that he is, so getting her to participate in her exercises is a little tougher and involves different tactics. She is finally rolling to her side, and he can roll from tummy to back!

They finally went to their first pediatrician appointment together with both Mommy and Daddy present, because before that it has always been just one of the twins. I had done one surgeon follow up with her and Vivek by myself, and vowed never again to go to the doctor with both babies without a 2nd person if I could avoid it. They both had waiting room meltdowns. I got many looks of pity and lots of help from strangers! I thought surely with both parents at the pediatrician appointment we were good to go. I'll admit I was a little judgy when I saw that my brother and sister-in-law brought their nanny to the pediatrician with their twins. Now I am just pissed that I didn't think of it first and don't have a nanny to bring! All is well until the Doc comes in and they then both start screaming and messing up diapers the entire 30 minutes we are trying to communicate vital medical information and juggle paperwork. But before the screamfest I did get a cute pic and video of them showing off their super-toned baby physiques!

Meanwhile I am pulling myself back together now that the appointments have finally slowed down. Many of them at the tail end were for Vivek to re-test his vision and hearing to satisfy my pediatrician, since that was all done in India where the records leave a lot to be desired. The bulk of the appointments from now one will be once a week for him. He has been recommended to get a helmet to correct his head shape. Unfortunately due to his position in the womb as a twin, his prematurity, his positioning due to reflux (unable to be flat on his back with head able to go side to side), and getting held less since she is home and requires so much care and attention due to her medical was unavoidable. I still manage to feel guilty despite the reassurances from the great folks at Cranial Technologies. But seeing nothing but twins in the waiting room though did help drive the point home that there was nothing I could have done to prevent it. I still find his mishapen head adorable in the pics they sent me from the headscan and cranial evaluation. He has moderate brachycephaly and plagiocephaly and it should be entirely correctable in 2-3 months of wearing the helmet. I have some cute plans on how to decorate it!

I am trying to take better care of myself now that the appointments have slowed down, and taking small steps to move forward in my career soon. Hopefully more on that front soon. Meanwhile Daddy is working overtime every week for over a month, so I'm usually by myself. I've realized the only way I'll get pics with the babies is if I take more "selfies" so here is one.
It is a whole lot easier to take photos of adorable babies when most days I've turned into a no-makeup, sweatpant-wearing stereotype. I'm starting my P90X again and daily food tracking on my Livestrong Daily Plate app, and if it stops raining we'll go out in the jogging stroller more. Mommy needs to take better care of herself! should probably take a shower. Soon!
In other news, the final medical bills for Miss Tara finally came in. I take everything bad I ever said about United Healthcare back. (For the most part!) Our portion of the hospital bill was $13.32, out of a total of over one and a quarter million for two months in the NICU!!! We pay a larger portion of the bill to the neonatologists group, but that still barely totals  over $3500. The last bill to come in was for the AMR  ambulance transport, but it stated that insurance didn't cover it. Since the AMR rep called me twice about billing issues and sounded like a nincompoop beforehand, I anticipated there would be a problem. After an hour on the phone to my insurance company and AMR we determined they used an incorrect billing code.  Turns out they deny "maternity benefits" when you code a 3 month old baby as a pregnant woman! That is being resubmitted as we speak. I also got a call from a collections agent about the ER bill, which I was still waiting on. turns out the jerks had our address wrong and made no other attempt to contact us despite having our info to call us or our insurance company. i did lose my temper on that phone call so that got fixed pronto! So by the time she is 1 year old if you total up the cost of surrogacy and India NICU care and all the specialists she now sees, with the portion paid by our insurance she will surely be the $2 million dollar baby! Below you can see what $1,265,822.12 in American healthcare looks like, and I think you'll agree she is worth every penny!!!
The last thing I'd like to share is that I'm very angry and very relieved to learn about the "decompression tube."  I had been told with a G-tube by other experienced preemie parents online to vent, vent, vent! But with continous feeds that is hard to do. Before her NICU discharge I had been concerned about their haphazard education on how to do G-tube care. They thought it was odd that I asked if they had a checklist or lesson plan to go over with me to make sure we covered everything. They were unfamiliar with the BARDs ince it was the first one they had seen. I was given a big booklet of generic information not specific to the BARD. During a late night call to home health nursing about the problem, I was told how to use a giant syringe in a cumbersome procedure to pull out everything from her tummy, remove the air, and put it back in. Doing that every few hours and constantly sterilizing the syringe was not very workable, and seemed to upset her more. Instead I just pulled the plug end often and popped it back in, hoping the "pfffft" of air I heard would offer some relief. But the gas pains continued.  I had talked to multiple doctors and nurses about the gas problems she is having daily over the past two months. What I had not been told by anyone was that there is a one way valve in the BARD button and there is a special decompression tube designed to vent the tummy. It turns out we already had one in the sealed BARD replacement kit we were given in case it somehow came out and we had to go to the hospital for an emergency repair. After talking to all the doctors and nurses abou the problem, it was the developmental specialist at that insisted that even if it wasn't a Mic-Key button there is probably a one way valve and there should be some kind of decompression tube provided.  Thank you!!!!  The first time I tried it I was shocked at how much air came shooting out! No wonder she was in pain!!! Here is hoping that instead of multiple daily screaming fits with no way to comfort her, this will be more of what we see in the future!