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.