The Power of Routine

Last week, one of my friends at work noted that we must be getting into the groove with Lil' Bit's meds because I seemed much calmer.  I suppose that's true, although I don't feel particularly calm most days.  Glad I can still fake it :)  Anyway, her statement made me think.  There is something to the power of routine.  It's how we sleep-train kids-Bath, Jammies, Book, Bedtime.  Each night, once the routine occurs, they learn to expect what happens next--lights out, door closed, sleep time.  So, even though interrupting our day 6 times for mediation still is frustrating, as is waiting the additional 20 minutes each time to make sure the dose takes, we're much better at it.  We have something that resembles a routine and it has made life simpler.  That is not to say life has been anything close to simple.  All of this craziness on top of Advent was bound to be problematic--and it has been.  But we have managed to stay married and not to kill each other or lose any fingers or toes.  All in all, I think we're doing well.

In the process of working on things, we had a fascinating discussion last night as we were contemplating whether we were going to go forward with another IVF cycle.  Yes, dear readers, the lack of posts about shots and prep is not because we're being quiet this time around.  It's because we postponed it.  Knowing that stress is such a huge factor in whether a cycle is successful, and both of us feeling that we were in way over our heads, we called the center and pushed our cycle out one month, with the option to push it back further, if necessary.  We are now figuring out whether we are willing to go ahead this month, or wait a while longer, or do it at all.  In that vein, we wanted to wait until Lil' Bit had her follow-up appointment with her pulmonary hypertension specialist yesterday.

Before we get back to the fascinating baby conversation, take another quick detour with me as I summarize where we stand with Lil' Bit's treatment:

1)  We can finally stop one of her three meds (after weaning for 1 week).  Hooray!  Happy dance!  *Insert other related excitement responses here*

2)  Her two other meds are still 2 and 4 times a day, respectively, and can't be within an hour of each other.  So, meds still 6X per day.  Boo!

3)  Her pressures did not go down, but they also did not go up.  *Insert neutral response here*

4)  Her condition is likely chronic, but that doesn't mean she won't get off the meds.  There are generally no concerns for children with pressures where hers are currently, but they want to keep her on the meds for about a year to see if the pressures will go down further.  *Neutral response, maybe slightly positive*

5)  She doesn't need to go back to the doctor for 3 months and won't have to have a heart cath for probably a year!  Yay!!!! *repeat*

6)  She still has to have monthly blood tests for one of her meds.  Boo!!  *repeat*

7)  She can go back to daycare in January!  Woo freakin' who!!!  [This is, truly, what will save our lives!  As a brief aside--a giant thank-you to those ladies who have come to watch Lil' Bit at our house so I could go back to work!!!]

In sum, still lots to do, but generally good news.  Lil' Bit it doing great.  In fact, you would think she's on speed with all the extra energy she now has, which is, apparently, fairly common in children who undergo heart surgery.

We return, now, to last night's baby conversation.  *Spoiler alert*  We still haven't decided where we are.  But in the process of talking about it, something interesting came up.  Phil was talking about how difficult it had been to interrupt his day to have to come home and give Lil' Bit meds at various times.  We discovered that he was experiencing something akin to the frustration I had felt when I had to do all the pumping.  Before I moved to a 4 or even 3-a-day schedule, I had been pumping 6 times a day, roughly every 4 hours.  Count 45 minutes for prep and pumping and another 15 for clean up, and it honestly felt like all I did was pump.  I would just get started on something else when I would have to go back and pump.  Likewise, Phil would get started on a project and suddenly discover that he had to run home and medicate Lil' Bit.  5 minutes of driving, 10 minutes of prep, 5 minutes of feeding meds (if lucky), 20 minutes of waiting to see if they took, 5 minutes driving back and *poof* he was losing multiple hours each day.  In the midst of this discussion, we both became more cognizant of the toll things were taking on us.  He had a better understanding of how difficult pumping had been, and I had a better understanding of how coming home to give meds was affecting him.  And we both became aware that it was the disruption to our routine that was causing so much stress.  As we talked about what it would mean to have Lil' Bit back in daycare so that much of our routine could return, we began to see a light at the end of the tunnel.  Routine, it turns out, is important for more than getting babies to sleep.

Ultimately, it was a good and important moment in the conversation because we were both reminded that stress, frustration, and lack of sleep are mutual enemies, against which we must present a united front.  By recognizing that we are both "done," we are much better out being less snippy and not taking our stress out on the other person.  Don't get me wrong, we're far from perfect, but I think we're doing a pretty good job.

In any event, here we are.  No decisions on a second child and still somewhat stressed by the first.  But things are improving, and time is passing, and we're getting settled into a routine.  Which begs the question--do we really want to wreck our new routine when we're just figuring it out?  Stay tuned, dear readers, to find out if we're crazy enough to attempt it.

Lessons From the ICU

Tom Petty said it best--the waiting is the hardest part.

Here I sit, a full week after Lil' Bit's open-heart surgery, and we still don't know when we'll go home. With her first birthday coming this weekend, and Thanksgiving next week, I am more than ready to be home. But, as with most things related to Lil' Bit, I am not the one in control; she is. Surgery went extremely well and she was on track to go home yesterday. However, over the weekend she couldn't keep anything down, including the meds she needed to keep her heart pressures in line. So, she's still in ICU, while they try and get those pressures in line.

 Making matters worse is that Lil' Bit isn't drinking much of anything (she is a great eater though). This is, ironically, a problem of my own making. She never took to drinking juice or water, and I never saw much reason to force her since she ate well and drank lots of milk. I had managed to pump enough to almost make it to her first birthday. Sadly, I didn't quite make it; we ran out--just before surgery. So, Lil' Bit wakes up at the hospital and all there is to drink is stuff she's never had before. It never occurred to me that my pumping & freezing plan would have such a major flaw. On the plus side, she's making progress with whole milk, and today she drank strawberry Pediasure, so they won't have to stuff it down a feeding tube. Still, if we ever needed more evidence that's she a stubborn one, this is it.

Not surprisingly, I can't control the doctors, or Lil' Bit's response to the meds, or make her eat, or make her nap.  So, I am really struggling. Xanax has become my new best friend. It really helps keep the edge off. Text and Facebook support, calls from my mom, and my in-laws' continued presence all help too. Still, there are days I am ready to cry, scream, or both, at the drop of a hat.

The waiting isn't fruitless, though. In waiting and learning the stories of other families, I am grateful that Lil' Bit is otherwise healthy. So far, she has had 6 roommates. Among them, an asthamatic; another cardiac patient who had surgery the day after, but has already been released; and two neuro patients--one 7 years old, and one 5 months old who has already had 4 surgeries. Elsewhere in the ICU are cardiac patients only months old, babies with RSV and whooping cough, a baby with double pneumonia and MRSA, and myriad other conditions. But, severity and longevity in ICU don't matter. What I discovered is that I am now a member of the club. Because all of these parents get it. Whether their child is in for a day, a month, or longer, they have all felt the tedium of waiting. They have all gotten tired of doctors and labs and tubes attached to their children. They all know that they cannot bear to eat another bite of Subway, Wendy's, Quiznos, or Biggby. And yet, we all cheer when someone graduates to go home. And we all grieve when a child is lost. And we all support one another as we wait. This support is sometimes all it takes to get through one minute, and then another, and another, until you look up and, finally, it's your turn to go home. It is an amazing experience of grace and love and community, and I am humbled to be a part of it.

 But, in case you were wondering, it doesn't make waiting any easier.

The Power of Permission

I'm the kind of person who doesn't like being told what to do. I like to do things my way, in my own time.  I also like to beat people's expectations.  If someone said I couldn't do something, I would do it, just to prove them wrong.  Unless, of course, I got the feeling that they were challenging me just to get me to do the opposite.  At the same time, I hate giving up. I don't like thinking that something beat me.

Taking all of these traits together, it isn't difficult to imagine the internal connundrum I experienced when breastfeeding wasn't working.  What was worse was that, shortly after my milk came in, the supply was suddenly much reduced.  I panicked.  Both my first and second choice for feeding my daughter seemed to be denied to me.  I was angry.  I wanted to stubborn my way through, but there wasn't much I could do if my body wouldn't cooperate.

One night, after a long pumping session resulted in little milk, I was done.  My hormones were raging and I was sobbing.  I didn't want to have to feed my child formula, but I was short on sleep and the pumping wasn't going any better than the breastfeeding.  In my exhaustion, I went to Phil and asked if we could talk about our options.  I explained that I didn't want to do formula, but the pumping made feedings take twice as long and wasn't producing much for all the effort.  Phil looked at me and gave me the best answer.  He said it was up to me. He would support me if I wanted to keep trying, or he would support switching to formula.  He gave me permission to quit.

Once I had received permission to quit, I wanted to try harder to make it work.  And, as previously noted, pumping ended up working quite well.  But, what I discovered is that granting permission can be an amazing thing.  It makes it easier to do what you know you should, but don't want to.  It's like when I would diet.  If I thought I couldn't have something, it was all I wanted--even if it was something I wouldn't want regularly.  Being allowed to do something made it easier not to do it.  Much like the child who only wants the toy that is being played with by someone else, it is that which we are told we can't have or can't do that motivates us.  Receiving permission can allow us to sit back and evaluate if that is something we really want, or if we were just pushing against being told "no."

I hope to remember this as I raise my daughter, particularly since she already appears to have inherited my stubborn and doesn't like being forced to do anything.  Perhaps a little permission can go a long way.  It certainly works for me.

How To Feed A Child

Who knew that feeding your new child would be such a harried experience. You're already nervous about your ability to take care of this little person and suddenly you discover that something as simple as feeding it carries a heavy burden. Whether it's the lactation nazis who make you feel like you've never done enough, the formula companies who seduce you with the ease of formula, or the parenting magazines who attempt to walk the line and sing the praises of both, parents are bombarded with tons of advice regarding how and what to feed their children.

While formula feeding was all the rage for my parents' generation, breastfeeding has come back into vogue. We are inundated with radio and television ads advocating the benefits of breastfeeding and are made to feel like failures and stew in a lifetime of guilt if we formula feed. Colostrum is often referred to as "liquid gold" and people who comment on pumping equipment and accessories refer to "every precious drop" and how horrified they are if any is spilled. There are even shields made to collect any milk that is released during the day rather than "wasting it" in a nursing pad in your bra. Then there are the myriad bottles that are made to be "just like mom" or "as close to nature as possible." It's clear that in today's world, breastfeeding is the gold standard and formula-feeding is the also-ran.

What I found missing from all the advice was a recognition that how parents ultimately decide to feed their child depends a great deal on the circumstances of the family and no position, regardless of side, can ever account for the endless possibilities of what brings parents to their ultimate decision. I don't think any woman who gets pregnant plans to formula feed. Even the teenagers of MTV's 16 and Pregnant initially attempt to breastfeed. Any why not? Outside of all the health benefits to mom and baby, it's free! Still, even with all the media pressure to breastfeed, whether parents elect to breastfeed or formula feed, there is plenty of support out there for either decision.

What's frustrating to me is that there is a third option that very few people, medical providers included, consider or recognize. It's not a simple option, or even "ideal" (although none of them is in my book), but it's the one that works best for me. But, before we discuss said option, let's go back and figure out how I got here.

I intended to breastfeed. I knew of the health benefits and was seduced by the thought of effortless weightloss as well as free food. I set up my birth preferences to include immediate bonding and attempts at breastfeeding in an effort to get off to a successful start. Nature, however, had other plans. Between Lil' Bit's need to head to the nursery for oxygen and my erratic heartbeat and fainting, we had little bonding time and no immediate attempts at breastfeeding could be made. When I finally got to the nursery to try breastfeeding, it was a spectacular disaster, with lots of crying on everybody's part. The nurses made a note to get me pumping equipment and to have me meet with the lactation consultant.

In meeting with the lactation consultant, it became clear that breastfeeding was going to take lots of work. Not only was Lil' Bit having issues not wanting to suck because it gave her a headache (the result of her conehead from the long labor and 3-hour pushing session), she kept getting her tongue in the way. We were given a contraption that allowed me to finger-feed Lil' Bit whatever colostrum I was able to pump and then supplement with formula without having to bottlefeed and, in doing so, we would teach her to keep her tongue down. This was an extremely exhausting system, as taping the small tube to a finger and getting said tube and finger into Lil' Bit's mouth was difficult. You wouldn't think so, but trust me on this.

When we would report to the nurses how much she was eating, we were informed that we weren't doing it right. She wasn't eating enough at each feeding. Although I listened thoughtfully, I wasn't sure what the nurse intended me to do. I couldn't make her eat anymore than she was. Besides, if I had been breastfeeding, we'd have no way to know how much she was taking in, so why was there this big to do? Each day I would try to get Lil' Bit to latch, but the lack of immediate food always left her screaming. The nurses told me to stick with it and that once my milk came in, it would be easier, because she would get an immediate response.

Once we got her home, we kept with the pattern. However, it became clear that the finger-feeder was not going to keep up with Lil' Bit. She had an appetite and it could not give her food fast enough. At this point, we elected to feed her from a bottle. I still pumped and we gave her whatever I produced from a bottle first, but if there wasn't enough, we supplemented with formula. I knew giving her the bottle would make breastfeeding more difficult, but the lactation consultant had told me that "going to the breast should be a good experience for the baby, so if she starts screaming, it's time to stop for that attempt." Well, there was always screaming. Remember my previous discussion about a stubborn child? She wanted her food and she wanted it now, thank you very much. I continued to try breastfeeding, but she never did latch. Even after my milk came in and was abundant, she still got her tongue in the way, she bit, she screamed, and we were both left tired and frustrated.

In my exhaustion, I remembered that the point was to give Lil' Bit breastmilk. I was already doing that--albeit by bottle. I was going to have to do that anyway once I got back to work, and this way Phil could help with the feedings. Before Lil' Bit was two weeks old, she was dining exclusively on breastmilk from a bottle without formula supplementation, and does so still today. We had stumbled upon what is known as "exclusive pumping" or "EP." This is option number 3, although it's hard to convince people. Everyone asks if we are breastfeeding or bottlefeeding, and I explain we are bottlefeeding breastmilk. The question should be: are you feeding breastmilk or formula, regardless of the delivery method. With EP, Lil' Bit and I both get the health benefits of breastmilk without the trauma of breastfeeding, and Phil can help with the feedings. It's not perfect. Feeding take longer--I have to warm up the bottle, feed her, and then pump. I am somewhat tied to the pump, as I pump 5-6 times a day at 4-6 hour intervals. And even when she sleeps through the night, I still have to wake up for a pumping session.

Still, doing it this way, I am prepared for when I go back to work and have already begun stockpiling milk in the freezer for when she heads off to daycare. And the truth is, neither breastfeeding nor formula-feeding is perfect either. Each option has benefits and drawbacks and it is up to parents to decide what is best for their child. I just wish there were sources of information out there for parents that outline all the options, highlighting their benefits and drawbacks, without pushing an agenda. As a new parent, I have enough to worry about without feeling as though I have done it all wrong before I barely got started.

*EP is receiving more recognition, such as this article in Time Magazine, but is still not widely accepted.