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.