Countdown to D-Day

So Dr. Treen calls me up in my usually groggy mid-afternoon state where I can't think of any good questions to ask and can't remember everything she said. It wasn't until that night that a nurse realized she was offering me the option of taking Tara home sooner with an NG tube (naso-gastric feeding tube) and continuing the bottle feeding re-training at home. I realized I'd missed my cue to show her our enthusiasm and dedication to that option, so the next morning I was determined to let them know we were all aboard and full steam ahead. I spent hours at the hospital with the doctor, the nurse, the social worker, and the respiratory therapist working on plans and getting the training I will need in breathing treatments every 6 hrs and CPT (pounding on her chest to drain mucus buildup) and NG tube usage. Fortunately the tube only needs to be changed once a month, and with a little luck she may not need it that long. Dr. Treen feels she could benefit from more consistent care, because a dozen nurses all learning her idosyncracies and bottle feeding the exact same optimum way is too tall of an order, thus her success seems to vary with each nurse.

She has completely kicked her nasty oxygen habit and is now a group leader at weekly Oxygen Anonymous meetings. She just got her one week sobriety chip.  Now she just has to kick steroids, which was her downfall last time, before she can go home. Her last dose was today. We'll see how it goes. She also got her immunizations finally, and that can cause a small setback. But if both of those don't interfere too much we are on target to go home early next week after we finish all the plans and do a car seat study and "room in" overnight at the hospital.



Her pompadour of hair gets higher daily!

 

One of my favorite faces!

  


Thank God for all the support in the American medical system. The social worker does all the legwork with the insurance company getting the approvals and orders for the feeding pump (fingers crossed so that we won't have to rely soley on gravity to make the milk go down), the breathing treatment compressor and parts, and the NG tube and other accessories. She is also working to see if Home Health visits can be approved for nurses to come by our home and provide advice and coaching, and possibly even a Feeding Clinic at a local hospital that can work with us in overcoming her feeding issues. It is amazing!


Check out mah chins!

Occupational Therapists will come to our home and review the usage of all the machines with me in the beginning.  The social worker also got our referral to the ECI (Early Childhood Intervention) state program to help them get developmentally on track, so physical and occupational therapists will come to our home for assessments and follow up and what I'm told is a ton of paperwork.  Dr. Treen asked me to call my pediatrician and make sure she was onboard with the NG tube plan, since she will be monitoring us probably on a weekly basis. Fortunately she was comfortable with it. Add to that we will be making regular pulmonologist appointments as well. It will be busy. And we are planning to get my son circumsized during this time since I'll be taking two more unpaid weeks off work to get all this routine set up. Whew!

 



I have decided in some shots that my baby girl looks like Mo'Nique!  

The nurse helped me mix up her formula with the Beechnut rice cereal as a thickener, and explained that we have to mix it in portions of 30ml or less. The nurses had discovered her success finishing her bottle in the 20 minute time limit depended on how fresh the mix was because the rice cereal gets thicker over time. I suggested we mix it further in advance with less rice cereal until it reaches maximum consistency so that we could avoid stopping the bottle feeds 1-2 times to re-mix more. However over time it breaks down and then becomes thin, so that won't work. Fortunately we have twice the number of small bottles as we do large ones, which we weren't using other than for med mixing since they only fit 60 ml comfortably and they eat more than that each feed. I'll just use two of them for every bottle feed for her and have the rice cereal ready to go in medicine cups. I'll just mix and move the nipple over to the next one lickety split. This means we still can sterilize every other day! Woo hoo!

Recognition and treatment of feeding issues was India's main failure, and I realize now they taught us how to bottle feed the exact wrong way. I'd been warned of this by a friend whose baby by Dr. Patel was also premature and stayed with Dr. Kothiala but was readmitted in the States, but not having had extensive coaching in alternative methods meant I wasn't sure how to modify what we were doing to prevent aspirations.We are making major modifications now to the way we bottle feed her not only because of reflux and aspiration issues, but because it is the correct way. We are mixing some of the Beechnut rice cereal with Vivek's bottles too and that has helped his bottle feeds go better and seems to keep the milk down with less vomiting. Things we are doing to bottle feed them better:

• Feeding in an almost completely upright position. I sit her little butt on my leg, and it is an easy transition to burping position.
• Burping in the middle of every feed and after. We didn't always burp Vivek as consistenly on his bad reflux days because it only seemed to result in a stream of vomit, but burping mid-feed may alleviate that somewhat.
• Chin support. Putting a finger at the base of the chin with very gentle pressure to remind them what they are doing and maintain good suction seems to help.
• Swaddling and limiting talking. During bottle feeding time you want to limit distractions and keep the focus on the bottle during her 20 minute time limit.
• Recognizing that any coughing means an aspiration has already occurred and we have probably done something wrong. The main culprite is the twisting and tapping we were taught in India to keep them awake through a bottle to get a full feeding down. Verbal stimulus is better to keep them awake, but at a certain point pushing too hard transitions into force feeding and makes an aspiration more likely. On the same note, pushing the bottle out with the tongue, opening the eyes wide, pushing away with the hand are all signs that there is too much milk in the mouth or an aspiration might be occurring. Though to some degree when a bottle is re-inserted into his mouth he sometimes pushes it around with his tongue for less than 30 seconds before he decides to suck on it some more. When he has been refluxing badly sometimes he needs more encouragement to start sucking because it gives him a momentary oral aversion, but recognizing when you are crossing the line into force feeding is important.

Tara is currently eating 4 bottles a day and most of the time can get most or all of it down in her time limit. I think if I make sure her breathing treatments are scheduled after her bottle feeds at home I'll have more success, because she cries through them and it tires her out for the feed. Once she consistently finishes 4 then we can move to 6. Once we get 6 we can move to 8. Once she gets 8 consistently it is bye-bye NG tube! I do see it going this way rather than resorting to a more extreme G-tube (gastric tube directly to her stomach) but it will just take time.

Regarding my concerns about her tachypnea being a more long term issue, they did tell me that even though 60 bpm is the high limit for respiratory rates,the fact that hers is often at 80 is not something that we or the doctors India needed to be so concerned with. This is because it is more about how labored the breathing is and the oxygenation. She can breathe at 80bpm without working too hard.

I've noticed her head is getting a little flatter on one side, so I've asked them to flip her around the opposite direction in the crib. She always is looking out to where the people are, so this should help even it out before it gets too bad, even though the location of the wires and tubes makes this position a little less convenient. Dr. Treen told me that there is nothing to be worried about this early on and it can reshape itself soon, and we aren't necessarily looking at foam helmets and neurology appointments in our future.

Dr. Treen also gave us a new diagnosis of RAD, or Reactive Airway Disease.  http://emedicine.medscahttp://emedicine.medscape.com/article/800119-overview#a0101pe.com/article/800119-overview#a0101

It is not asthma, but shares some similarities. Asthma cannot be diagnosed until she is older and can participate in a breathing test, but she is at around a 30% higher risk for true asthma because of this. RAD along with BPD (bronchio pulmonary dysplasia) means she will have some breathing issues and tire out quicker during her youth. We have to be on the lookout for wheezing and tachypnea always. Some retractions are normal I've finally realized, partly because the chest is so malleable at this age. But I can clearly tell when the denting in of her chest becomes more extreme and her breathing is more labored than usual. Grunting during breathing is a bad sign as well. But ultimately the pulse-ox monitors Vinnie bought will be our guide before she gets to that point hopefully. Dr. Treen said that if she drops below 92% oxygenation consistently to call our pediatrician and take her to be evaluated. We also have to avoid all airborne irritants, to include colognes and perfumes, aerosol sprays, incense, and smoke. I plan on having a ceremonial fire in the fireplace this weekend before she comes home as a last hurrah. Being around smokers is bad for preemies, but super bad for Tara. Any smokers in the family will need to be freshly showered with freshly washed clothing and not have smoked before seeing her, and we may want to limit contact a bit.

Thanksgiving was a collosal Fail. Because of my nephew's fever and sore throat my in-law's celebration was cancelled. My Mom and I tried to salvage some of the holiday by eating what she had prepared with my Stepdad the next day. Our Thanksgiving feast consisted of way too much turkey for 3 people, gravy, sweet potatoes, and stuffing. But something about the stuffing was just WRONG. It tasted like something had gone bad and we had to throw the entire vat o'stuffing in the garbage. We tried to figure it out but were unsuccessful, but I personally think it was the giblets. The turkey had cancer of the giblet. But at least there was pie.



Vivek got to meet his Uncle Matt!

I was asked over the Holiday "Are you ready for her to come home?" My answer was not so much in the affirmative as it was "We can adapt to whatever comes up." In that sense we are ready. With all that is coming with her return home, especailly now with the NG tube, I don't think it is possible to be fully prepared for what is to come. Instead I think you rise to the occasion and instead of being ready and prepared you rapidly compensate for anything you didn't expect to happen. I think Vinnie and I have done a bang up job of that, and more and more I'm realizing that parenting is half preparation and half adaptation on the fly.

I have realized that our dog sees himself in competition on the social strata with our son, and it will only get worse as our daughter comes home. It is only a problem when Vinnie or I seem available to him for affection, so in true Cesar Milan style we can no longer give him affection with the babies around. He will try to place himself physically between us and the baby to assert himself and disrupt affection to the baby. I experienced this when I put Vivek on a floor mat for the first time. When I tried to push Ralph away he growled at me like I have never seen before. I pushed him away more assertively and growled and barked right back and that seemed to give him a clear message, and he kept a wide berth and waited for permission to approach after that. Treating the baby like a posession that he cannot touch is also another way to think about it, rather than the complexity of asserting the baby as "Alpha." But from now on my affection to Ralphie will be when the baby is not nearby.



Nobody loves me anymore. I think I'll just eat worms and sleep in the laundry basket.

Dadoo & Dadima have been amazing helping out as much as they have, making it possible for me to go to the hospital. It is wonderful to see how much they love our babies, and when I show them videos of Tara they laugh and talk to the camera like she is right there in front of them! I'm hoping once she is home we can develop a routine where we are not needing as much help, but right now it is essential to help us get through this difficult stage.

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.

Single parenting sucks

Vinnie: "Could you drop by in the morning on your way home to make sure I wake up for my doctor's appointment so I don't miss it?"

Me: "Sure. But I may punch you in the face just to make myself feel better."

Vinnie: "Okay."

I've tried to muster up more empathy that my never-sick husband has a raging case of what sounds like strep throat and his voice is so shredded he is barely intelligible. Instead I am angry at him for getting sick during such a critical week. I don't know how single parents do it. And single parent's of twins? Dear God...

To add to matters we have the following complications:

1. My son is showing the signs of developing colic right on the 3-6 week post due date timeline. It should be a fun next 2 1/2 months until it naturally abates. I try to take it in stride but there is only so much you can do for the little man and it just sucks.

2. I can take more time off when Tara is discharged for her care and to get them synced back up before returning to work. But there is no way in hell I can do it right before and on Thanksgiving when I work at 911 where we are staffed 24-7 and time off for the holidays during November and December is nothing short of sacred. I would be universally loathed and ostracized at my workplace for the rest of my employment there. If she gets discharged this week I have to find a way to work through Thursday night, even if my husband is still not safe enough past his illness to be around the babies.

3. Utilizing my parents and his parents so much to help us overnight while Vinnie is sick I'm sure is exhausting them, and could cut into prep time for Thanksgiving cooking. Pizza anyone?

4. I am getting mandated to work an extra 4 hours on Thanksgiving day from 7pm to 11pm on top of my regular 8 that night. Oh yeah, and if all goes well tomorrow from the swallow study she could be discharged on Wednesday or Thursday and I'll be awake probably all day at the hospital doing paperwork. If we weren't planning on our Thanksgiving celebration on Friday afternoon anyway I'm pretty sure I would go into thermonuclear meltdown. I would hire some help temporarily but something tells me that is beyond a longshot given the holidays.

5. I haven't been able to see her yesterday and probably not today either. The longer I go without seeing her the more crazy emotional I become. I'm like a walking pressure cooker and seeing her is the only thing that eases the pressure and makes me able to keep going. I picture my husband sleeping soundly through the night with an occasional cough and I want to go over there and smother him with a pillow.

6. I found out my workplace is changing my days off with little warning due to the fact that they put too many people off on the same days and are only just now realizing it since I've come back to work. Stupendous. I'm so close to the top of the seniority list I could lick it, but I'm still going up against two folks just past me who want the same days off.

It seems like every time I tell myself "If I can just get through this week...." that something else piles on top. I'm trying to just focus on what is important...that my daughter is alive and okay and coming home soon even if the week surrounding it is craptastic.

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.

Preemie Parenting is Different

I apologize in advance for the long post, but there are a lot of musings bouncing around in my brain that I want to share with the interwebs. Most of my readers outside of family looking for baby pics and updates are probably folks in the surrogacy community or looking to join. I hope that my blog is in some way helpful to you. Now that I've been kicked out of the Infertiles Club (though I did keep my gold 8-year membership card) this blog is transitioning into one of the oh so numerous Parenting Blogs. There are many out there that are far more informative and waaaaay funnier. Like, laugh out loud and try not to wet your pants funny. See www.jennepper.com . But this one is mine so my point is that those other blogs can suck it.

No really. My point is that I am going to blog not just about my babies and post pics of them, but also about my thoughts on parenting now. Perhaps some folks out there will find it interesting. I'll admit it will probably amount more to a cathartic exercise for me, but either way I enjoy putting it out there.

So. That being said...

I am tired of washing my hands all the time. As soon as I admit that to myself the newly acquired little voice in my head that shouts out "BAD MOMMY! BAD MOMMY!" goes into overdrive. I am not a germaphobic sort of gal, though my husband is slightly. I have finally been successful now in keeping my house clean and it does not cause me the same anxiety as it did in the past. But there is a difference between normal clean and sterile. It is a difference most people don't think about. But as a preemie parent it is something that you think about constantly.

My husband told me this morning he will find himself washing his hands realizing it is probably excessive, but not really able to stop himself. I find myself doing the same thing. It is a constant question of do you deal with the anxiety of thinking that in the last 30 minutes your pinkie may have accidentally brushed against your shoe when your legs were crossed and now you are about to pass on a resistant strain of e. coli that will put your baby back in the NICU, or do you just suck it up and go wash your hands AGAIN. The latter is a lot less stressful, but it does result in going through enough paper towels to destroy a forest, kill the ozone layer, and keep Costco in business. Don't let me get started on the whole "...but did I wash them long enough?" thoughts that now invade my brain. Add to all this the average person touches their face 15.7 times per hour. I am now aware of when I touch my nose or mouth and 15.7 times per hour I ask myself "Should I wash my hands or use hand sanitizer?" Welcome to my slippery slope.

Before this I was a person that followed the 5 second rule religiously. I invented that rule. There may have even been a time or two in my life where I neglected to wash my hands before leaving the restroom. *COLLECTIVE GASP* Now I am a person who by the end of the year may not have any fingerprints left and OCD is not to blame. I am now a person that sees every surface in the house as a petri dish breeding ground of death and Lysol antibacterial wipes are my salvation.

As a parent I would have to say I am pretty relaxed. I do worry about some things like a new parent does, but I think I am on the low end of the scale. I'm determined to finally get my chance to enjoy this parenting thing and am not going to be a controlling worrywart about every little thing. I've seen those kind of parents and am determined not to be a helicoptor pilot. However I'm sure people won't see me that way because of the germ factor. The key is it that it's not paranoia if your fear is rational. And with immuno-compromised twins it is rational.

I'm not one of those folks who gave birth to a 1 pound 24 or 25 weeker that try to set up their house like a NICU and don't allow the grandparents to hold them the first year. There are those folks out there, though I wonder if they actually gown and glove like I have to right now at the NICU. Frankly I wouldn't be surprised and I don't judge them for it knowing what I know now. I also am no longer judgy about people that put their kids on leashes by the way.

But I am someone who is now constantly conscious of surfaces and behaviors that could spread germs that were never even on my radar before. I am more grateful now than ever that my pediatrician spent a year specializing in infectious diseases, because I trust her explicitly to help me navigate this new world of preemie parenting and know whether I am making a rational compromise or going way overboard.

To some degree when you become a parent you become a self professed expert on all things parenting. You have joined the dark side and are now qualified to spew advice. Whether it is wanted or not... I'm sure by my behaviors, especially concerning my daughter, I'll be seen as THAT MOM that is germaphobic/OCD/paranoid. They will laugh to themselves about first time parents as they pick up a pacifier off the floor, blow on it, and then jam it into their baby's mouth.

Parents, even first time parents, have a lot of luxuries they take for granted. They may worry about their children, but their worry does not go as in depth as a preemie parent who has risk factors they have never had to consider. There are so many things they have the luxury of not thinking about. When you child is immuno-compromised and has BPD and feeding issues and almost died things that would be innocuous with a full term baby take on a whole new meaning. If she coughs or grunts during a bottle feeding it is not a cough or a grunt. It is a potential aspiration that could cause a viral infection and now you have to watch her even closer than you did before for those oh so subtle signs that occur before they turn on a dime and OMG you are back in the NICU. If they breathe fast for a little while it could be tachypnea signaling a reflux aspiration or another infection. With a full term baby it would likely be dismissed as being excited or hungry.

My son was up crying way more than usual last night with gas and perhaps our introduction to the wonderful world of colic. He slept like a rock all day and only ate 3/4 of his usual bottle for 4 feedings because "I'm full enough now thank you and wanna sleep so I'm spitting this mouthful at you to drive that point home." Being really tired makes a lot of sense. But listlessness and a few hours of feeding disinterest was the only identifiable symptom before I had to give CPR to my daughter. In an adult to identify the priority symptom of decreased level of consciousness you simply nudge and tell them to communicate with you what day it is or other info that tells you they have normal mental status. An infant sleeps so much and responds in such a subtle way that it's almost as if a decreased level of consciousness is a normal state and it makes it harder to detect a problem.

So even though I know Vivek is probably just tired from making my poor husband pull an all nighter, I'm studying and counting his breathing and picking him up unnecessarily to make sure he is not limp and messing with him a bit to make sure he seems appropriately annoyed. My point is there are so many things that babies do that in a full term baby can be easily dismissed but in a preemie become potential symptoms with a high penalty for failure if your decision is wrong.

That is why I cried this morning from gratitude that I lucked out by marrying a man that turns out to be such an incredible father and husband. More than I ever knew he would be. He searched for hours on the internet for affordable pulse ox monitors that were approved for neonates and they arrived yesterday to my suprise. I realized that helps to eliminate this "am I being paranoid?" guessing game that we have to do with our babies. I won't have any doubt now that it is time to call a doctor or take them to an ER. An apnea alarm is great, but cannot detect an irregular breathing pattern that is resulting in hypoxia for an extended time. A pulse ox monitor will let us know if her breathing is being compromised long before the point where symptoms are more readily identifiable.

It's the same reason I was overjoyed to find a brand new $60 digital baby scale at a thrift store for $5. Worried they aren't gaining enough weight and the routine doctor appointment is in 3 weeks? No worries. Just pop them on the scale and breathe easy.

I've had some folks be judgmental towards us about the scale and the monitors and make some comments I did not appreciate. I think it is because they need to judge me as overcautious because otherwise to them it would mean they are not being cautious enough. I don't judge folks for not going to the same lengths we are at all. Everyone has different experiences, and we have additional risks and have seen things go really, really wrong so we have good reason for our cautious approach. And keep in mind that for 12 years I have worked at 911. I work at "Bad Things Happen to Good People" Central Station. What some people see as being overcautious is me managing risks based on over a decade of information on what actually happens to people everday that most folks don't hear about. Some of the worst stuff happens to great parents who never thought anything like that could happen to them.

I guess what I'm realizing about this parenting thing is that just like most things in life, you have to do what you know is the right thing and not worry so much about what other folks think of you. I would give anything if my babies could have been born full term without having their health compromised and so that I could exist in blissful ignorance of such complications. But this is my reality, and I have to accept that we share more risks and there are certain things we cannot do. So I guess that means no pictures of my babies on Santa's lap screaming in terror this year. Maybe next year I can traumatize them.

Preemie parenting is different.

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...

Who Inspires Me

I am humbled that several folks have told me they are inspired by all that I have gone through recently to bring our family home. There were so many times I felt tired and weak and like I couldn't do it anymore, but one of the things that kept me going were the people that inspired me. So many others have endured far more than we have, and despite Tara's recent hospitalization overall we have been very lucky to avoid many common preemie complications.

I, like so many in the online surrogacy community, am in awe of Bernadette. She is the author of the Rasta Less Traveled blog. She also had boy/girl twins in India at a different clinic from ours in Delhi. They were premature, but not nearly as as much as mine. However, her son was not born healthy. He is medically complex, and it wasn't until her five month exile in India was over and he was medivaced to the US that he finally got a solid diagnosis. Chances are he will not live past the age of three, and she has recently been told he may not even live three more months. Despite the fact that he has chronic complications she is still fighting hard to find a way to bring him home with his sister. She is an amazing woman, and also an amazing writer. On my worst days I would always go read her blog and be uplifted, and her most recent posts have brought me to tears.
http://www.rastalesstraveled.com/2012/11/so-long-as-he-is-happy.html

The other night I found the website for the Hand to Hold organization and their yearly Preemie Power contest. People nominate their preemies for the award, giving them superhero names and telling the story of of their super powers. I've gone into the archives and read them all, and included my favorite below along with the link to their website. Thundering Thurston was born at 27 weeks just like my babies were but 12 oz smaller than my daughter, so it goes to show you just how lucky we were.
http://handtohold.org/category/preemie-power/


Thurston M. – Thundering Thurston
Current Age: 8 months
Weight at Birth: 1lb.4oz.
Weeks Gestation: 27 weeks
Time in the NICU: 230 days and counting

Diagnosis, complications, surgeries?
IUGR, BPD, CLD, PDA, High Blood Pressure, Pulmonary hypertension, over 20 blood transfusions, multiple Nitric Oxide infusions, on the oscillator for first 4 weeks, on the cpap for a very long 13 weeks, on cannula for 4 weeks, aspirated(we think) and almost died again, back on oscillator for 2 weeks, cpap for 1 week and back on high flow nasal cannula, switched hospitals, gtube/fundo surgery, possible trach surgery, possible hernia surgery, ROP stage 2 zone 2 resolved, 4 rounds of steroids, on chronic diuretics, inhalers, and multiple other medications etc.

Why should your child be recognized as “Preemie of the Year”?
Thurston has been the most extraordinary little superhero ever and the best teacher anyone could ever ask for. He has taught me and my family numerous lessons, and in true superhero fashion, has shape-shifted all of us, warming and changing our hearts forever.
When we were told that Thurston was not going to even make it out of the womb, they sent us home for him to pass away quietly inside me. To try and cope with such a great and sorrowful loss, I kept thinking about how lucky I was to have known him even that much, to have felt his little kicks, to feel him inside me just even for a few more days. He taught me to carpe diem, or seize the day, and to enjoy what time I did have with him, however short that was to be.
When he hung on and was born, he taught me about patience. He taught me that things do not happen overnight. I really wanted him to come home around his due date and when that didn’t happen, I became frustrated. But after he continued on the roller coaster journey and went through some more harrowing dips, I realized how much I had to be patient, as with patience comes strength, calmness and happiness and that is what he needed his mother to be.
He taught me great humility. On this journey it is very easy to get caught up in thinking, “Why me, why my family, why my pregnancy, why my son?” As you begin to meet others on this journey, you realize there are so many others going through the same thing, and still others that are dealing with far worse tragedies than your own. Then the “Why Me’s” slowly turn into the. “Why them?” Thurston made me look outside of myself and my own problems and realize just how lucky we have been on this journey and has encouraged me to reach out to others who are hurting.
Most importantly, Thurston has taught me to hope more than I ever thought I could. In the beginning I believed so much of the worst case scenarios that were thrown my way. Just when I thought he was out of the woods, Thurston was again knocking on deaths door and instead of believing the worst would happen I clung onto the most amazing and overwhelming feeling of hope, realizing not only had he proven time and time again that he has the ability to overcome obstacle after obstacle, but that he deserved a mother that was as strong, as tenacious, as stubborn, as persistent, and as brave as her son had grown to be.

Using three or more typical characteristics of a Super Hero, please describe your child.
Adopting his secret Identity in the day, Glowie(pictured above), the great and powerful Thundering Thurston fights crime and grime at night to keep Nicutropolis safe from its evil enemies. He and his sidekick Mini-glow(also pictured above), take to the streets in search of virulent villains. So far he has defeated his arch enemies Rhett N. Opothy when Thunder zapped him with his laser eyes, and that dastardly Petey A. who didn’t stand a chance against Thunder’s powerful partner Dr. Mavericks poisonous concoction. But his most evil and dreadful nemesis, that ever chronic Lun D.Zeez has still yet to fall prey to Thundering Thurston’s superhero strength. He has used every weapon in his arsenal, the all powerful oscillator machine, the cpap snorkel of death, and the ever auspicious nasal cannula tube of life, and still Lun escapes time and time again. Thunder has thrown poisonous lightening daggers at his enemy filled with all sorts of concoctions, but to no avail, that Lun persists like a petulant plague. His last resort, like Popeye with his spinach, is to use his secret port, the gtuberon, and fill his belly with a magical potion of milk and great fortifiers pumping his body full of the strength greater than 100 steam engines combined. Thurston’s bravery is unmatched and has faced death nurmerous times especially at the hands of Lun and his gang yet he continues to fight day and night with great tenacity, vowing he will never leave Nicutropolis until Lun is finally defeated and the city is safe once again.

What advice do you have for future NICU parents?
Get a lot of rest if you can. Don’t be afraid to ask others around you for help. Keep your hopes up.

Back to work

So I went back to work Sunday. The work is easy enough because even if I'm tired and adjusting my body still, somehow my hands and mouth somehow seem to remember what to do even when my brain hasn't caught up yet. Thank God for caffeine. I like working on a lower stress slower shift given the major life changes we've gone through, and it helps me keep my focus first on my family as I envisioned. The hard part is sleeping. I have enough opportunity during the day when Vivek is sleeping, but my body is still fighting it. It will get a bit easier after a week I'm sure, and after Tara is home then I'll have even more time to sleep or get stuff done since I won't be carving out several hours of outside care for him and travel to the hospital to see her. Vinnie is doing a great job and working out a schedule that works for him. Unfortunately Vivek seems to be fussy and gassy for a few hours late at night so that makes it tougher on him, but I help him catch up on sleep in the morning. I'm so proud of the job he is doing and we are making it work. It makes you love your husband so much more to see him being such a good father.

Sunday afternoon Vinnie took care of my stepdad and Vivek so I could bring my mother to see Tara finally. It was long overdue since her last memories of her were less than pleasant two weeks ago. She managed to hold back tears and held her for an hour.

Tara is doing fantastic. She is now down to 1L of oxygen on the nasal cannula! Only slightly more than room air, and on a low flow rather than fast flow. She got her last dose of steroids, and they moved the orogastric tube to her nose to prep her for bottlefeeding. That made her very happy because she hates tubes down her throat. When I saw her last night for the first time she seemed comfortable and like her old self, happy and adorable. She was not getting upset or agitated to get messed with and when she coughed she did not go into a coughing fit. She stared at me for an hour making cute little faces, and I'm pretty sure Maleka is her favorite nurse. The doctor called today and left me a message while I was sleeping, and said the occupational therapists gave her the first bottle feed. She did gulp as expected and they had to work on pacing her. We'll see where we go from here, but the residual effects of the pneumonia are abating.

Meanwhile Vivek decided to be a candy striper for the day and we visited my husband's cousin Preeti in the hospital. I had been to her baby shower the previous day, which had been moved to the Presbyterian Hospital of Plano cafeteria due to her medical issues in her pregnancy. Her baby is 3.4lbs and she is 32 weeks along, so I assured her she is in a great place and not to worry. I know how much it helps to see a baby that was as small or smaller than yours big and healthy, so glad I was able to do for her what my brother and sister-in-law did for me. Vivek showed off his 8lb frame and was a perfect angel as she held him. It lifted hers and her husband's spirits I'm sure as they wait the 1-4 weeks until their early delivery, and it was nice to donate most of his old preemie clothes to a good cause.

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!