Worth

In these past two weeks since she's been home, I come to the opinion that having twins with one requiring medical care must be like having triplets. It's not that the routine care Tara requires is terribly complicated (though recognizing signs/symptoms of problems and discussing modifications to care with her doctors is), but that it is time intensive. I've got them sleeping through the night. I've got them sleeping at the same times during the day for the most part. Finally having continuity of care has her health as stable as it has ever been. But it doesn't matter. Because every 1-2 hours something has to get done except for one 4 hour gap from 4am-8am. Here is a short list:

1. 6 different medications delivered on a  strict schedule
2. Breathing treatments every 6 hours
3. Chest physical therapy every 6 hours
4. 2-3 bottle feeds per day for 15 minutes, requiring the feeding pump to be turned off for an hour beforehand. Her oral feeds will be upped gradually in frequency and duration to get her to 100% oral feeds, hopefully before she starts solids in 4 1/2 months.This will make things much more time intensive.
5. 2-3 doctor appointments or lab tests per week
6. About 2-3 calls about doctor appointments or from doctor's offices, nurses, case managers, social workers, or insurance compaly representatives per day
7. Rinse and replace the formula in the feeding bag/pump every 4 hours
8. Replace the feeding bag in the pump daily.
9. Replace the BARD button tube weekly
10. Wound care at least two times per day.
11. Tummy time for both babies for 15 minutes daily
12. Baths for both babies every other day
13. Sterilize bottles and pacifiers daily.
14. Mix 24 cal formula pitcher daily
15. 3 medications daily for my son

In between all that you have to cram in around 14 diaper changes per day and then 7 bottle feeds for my son. Then throw in all their laundry. When they are awake you need to be awake and playing with them and stimulating their development, especially given their prematurity and risk for delays. Then sometimes they cry for gas pains or no reason at all and you need to hold and soothe them. She has a big temper and it can take a half hour to get her calmed down. Oh yeah...and I have to eat and sleep occasionally.

If it was just two healthy twins with the requisite bottles and diapers our original plan would have worked. If our insurance had approved private duty nursing (which babies with less medical need get approved all the time I'm told by our Home Health Nurse), our plan would work. (We are now attempting to get it covered through my husband's insurance or other social service programs, but that will take time and there are wait lists.) If I made a bunch more money than the skilled assistive care she would require per month, it would work. If I didn't have debt to pay off from surrogacy, infertility, and previous medical expenses that insurance didn't cover and a car that needs replacing next year, it would have worked.

But as it is, there is just no way physically or financially I can continue to work full time and give Tara the care she needs and get enough sleep...even with all the help my in-laws have given us and having refinanced our house on Monday for substantial monthly savings. I'm severely sleep deprived even while I've taken two weeks off of work and had our in laws come in and help! My husband's job evaluates him solely on his speed in a call center environment, and him going it alone while I work at night has him so tired that it slows him down at work and can put his job under threat if it continues.

Fortunately I have a retirement account that I can use a portion of to resolve financial concerns we have and to make it possible for me to take some time off to care for her. With careful investment and savings moving forward in our future I can restore and double that account in half the time. In a short time we'll be in a much better situation for me to return to work at either my old job or a new one.  Not only will Tara's medical regimen reduce dramatically and some of her health care issues improve, but we will  then be able to afford skilled care even if we can't get coverage for private duty nursing. In general, a lot of things get easier for babies the older they get, and Tara will outgrow her need for the G-tube and meds and breathing treatments, and eventually her lung disease entirely.

As much as I love my current workplace, I am at peace and much more relaxed since I've made this decision because I know it is the right one for my family. Having a family means making some hard decisions, but somehow it is so much easier to make them than before.

There were times in my darkest days I wondered if maybe the pain of infertilty was too much of my own making. That perhaps finally having children wouldn't actually offer me the glorious bounty of happiness that I had imagined and mourned for daily.

Nope. It is even better than I ever imagined. Even when I haven't showered or shaved and am wearing the same formula covered clothes for a number of days I'm not even sure of, and am so tired the world is blurry around the edges.

Notice that I'm not saying "those eight years of infertility were all worth it." I won't minimize or rewrite the past. The present does not erase it. I won't say "I wouldn't change a thing" because it brought me to where I am now. Call me cynical, but I don't think those eight years are somehow worthwhile now because it makes me appreciate my babies more, I'm a stronger person, it has taught me so many life lessons, or it is the cause to my current effect. Sorry, but I'd still rather not have gone through it and popped out a these kids on my own years ago and my biggest problem be my stretch marks and what to cook for dinner. On the same note despite how extraordinary the entire experience has all been, I'd still rather my babies have been born full term and healthy right here in the Texas and not have had to go fight their way through 3 NICU's in 5 months in 2 countries.

It is really hard, and my life sure seems overwhelming when I look at it as written above.

But after a few days of adjustment to our whirlwind routine, it doesn't really feel that way most of the time.  I may have a bad hour or two or even a bad day, but the thing is....every time I reach down to pick them up they smile at me. They even laugh now too! That moment in time makes me happier than anything else has ever made me. And it happens dozens of times a day. I've come to the realization that it's not about making the bad stuff "worth it." It's just that there is so much amazing, fun, beautiful, happy, and incredibly good stuff.

So if anyone out there reading this is wondering if it will all be "worth it" one day when it is all "over," I can't promise that. The best laid plans... But I can assure you, your child will make you more happy than you ever dared to dream of and it pervades every part of you. It's the biggest and best kind of love there is. The time you spent worrying about this child feeling like it was less yours because of an egg/sperm donor, adoption, being an older child, or growing in someone else's belly will seem wasted. So if you are out there struggling with the decisons surrounding making your dream of parenthood come true and trying to make the optimum choice and control every aspect of the outcome like I did, my only advice is  that in the end the "when" will matter so much more than the "how."

Tara and Mommy in the same dress circa 1977!

The Most Important Thing to Remember about the NICU....

The most important thing to remember about the NICU is that it will one day be over. I had been told that and it has been a mantra that has kept me going on some of my toughest days.

But this week as her possible discharge on Wednesday loomed, I found myself facing the reality that while her time in the NICU is hopefully coming to a close a lot more of the NICU is coming home with her than I expected.

There would be feeding pumps, NG tubes, breathing treatments, and multiple medications as well as weekly visits from home health nurses.  And if after a few months she did not progress her bottle feeding then there could be a G-tube placement.

It didn't seem as intimidating a week ago and all I wanted was my baby back so I wouldn't miss out on her life, but then as it loomed closer the reality of it is a bit more unverving. Thanks to http://www.feedingtubeawareness.com/index.html I was starting to see the possibility of a g-tube in our future as a more positive and temporary thing. Initially I saw it as a slippery slope to long term feeding issues that was only for "really sick babies." And I was certain my baby was not one of "them." But I'm beginning to accept that while it could be worse, RAD along with BPD and GERD are serious diagnosis that can cause some longer term issues that will complicate all of our lives. It sucks.

It's a mixed bag but it could be so much worse because I know of babies that go home on trachs and have much more complex issues. I tried to keep that in mind, but still felt down because my baby is going to have more struggles than I had hoped for. It still baffles me a bit that these issues were always present, but the initial NICU ride seemed so smooth and how she was 5 lbs ago did not seem to indicate what would come to pass.

I expected linear progress in bottlefeeding, but now I realize I was in denial and being a bit naive. I had seen her bottle feed like a pro, so once the formula was thickened to prevent aspiration issues she was having problem solved right?! Not exactly. Enter Reactive Airway Disease. I'm told that if her breathing was just fine she would probably be bottle feeding without a problem, but being the way it is it makes bottle feeding so much work that she is either incapable or uninterested for the majority of her bottle feeds. I was beginning to fear oral aversion and g-tube as more real possibilities. But then again, for at least two of her bottle feeds per day she sucked down all 75ml no problem. There is no way to predict the future and only our little Tara (who just hit 9lbs) holds the key to what happens next. Those of you that know me know I don't exactly thrive on  uncertainty.

I had a rough bottle feed the Friday night that did scare me, and I got to see her get worked up for no good reason and be difficult to calm down. The next morning it got worse and she began wheezing and I called off the bottle feed. The nurse concurred with my assessment, which helped me trust my judgement. But it just shows me that I'll be having to make some judgement calls with no nurse to guide me about whether to continue a bottle feed or not in the future. I wanted to push her just enough to progress her oral feedings and she doesn't become "lazy" and progressively resort to NG feeds, but not push her too much that I compromise her breathing significantly.

I thought the scariest part was that when she cries and gets worked up it causes respiratory compromise, so there is urgency in getting her calmed down. Her oxygen dips into the 40's and she sometimes stops crying just due to the exhaustion that causes. I"m trying to figure out why the nurses aren't as alarmed by it as I am. With my son I can reassure myself that he is okay and can go ahead and get the bottle ready knowing he is fine and will stop crying in a minute when I bring it to him. With her I have to respond immediately and there is no such thing as "crying it out" with her due to her respiratory issues. That is a freaking ton of extra pressure. Did I mention I have TWINS! My little man is going to have to cope on his own more than I wish he did, because if they are both crying for attention she will have to be the one that gets it for medical reasons.

I think I'm also mourning the loss of freedom. I'm trying to understand the "reactive" part of RAD and if by simply stepping out my front door I'm putting her in danger. Do I really only take them outdoors for doctor appointments only? For how long? Am I being irresponsible if I put them in a stroller and take an evening walk alone with no people nearby in April? What if I take them to a relatives house?

I was hoping to regain my excitement about her finally coming home, but  in the days before her discharge I was only feeling anxious and have so many unanswered questions about what the future holds and all the implications of her diagnoses. But then Sunday happened. Then Monday and Tuesday. And now it is Wednesday and in case you hadn't noticed there is no celebratory post that my baby is finally home.

The NICU journey is now far from over. Update to follow.

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.