Sunday, September 13, 2009

Breastfeeding

The time has come to wean Sarah off breastfeeding. This is actually rather abrupt due to the requirement of myself needing to start medication to kill tuberculosis (it's currently dormant so I'm not contageous). Jonathan reminded me of some of the breasfeeding ups and downs we've had during these last 13 months or so. I realized I hadn't documented any of my breastfeeding woes and successes.

I did mention that after Sarah was born she seemed to latch on fine but that due to jaundice there were expectations that Sarah would feed often and quickly and she just didn't seem to want to be on that schedule. During our stay in the hospital the three days after she was born my focus was feeding Sarah. She was in the NICU so I was unable to practice changing her diapers, putting her to sleep, soothing her when/if she was upset, etc.

When we brought Sarah home, that first night was long (it's embarassingly comical now). I was basically irrational and super paranoid of harming her. Everytime I tried to put her down while she was sleeping, she would wake up. I ended up sitting in our recliner holding her the whole night. I wouldn't let myself go to sleep because of all the warnings that you could smother/kill your child if you sleep with them. I realized that in the NICU I never got to practice swaddling her and putting her to sleep because the nurses did that. Sarah always seemed more than willing to sleep in her little warming bed in the NICU. I decided that because I was having no luck putting her down to sleep I would just stay awake until the morning while holding my sleeping baby and then I would have my in-laws watch her while I slept. During this time the easiest thing was the breastfeeding. My milk seemed to have come in and I realized this was the only thing I practiced while in the hospital with her.

When she was a few weeks old, the metabolic doctors basically said my breastmilk contains the fat that could (in layman's terms) poison her cells and cause her to stop functoning and die if she has the disorder that she was flagged as possbly having by the NBS. I was told to stop breastfeeding and feed her the elixir. The elixir included some long-chain fats because the human brain requires it for development. Instead of using formula in the elixir I pumped, or expressed, my milk so as to keep my milk supply flowing because I was determined to breastfeed and I wanted to be able to still breastfeed if Sarah's NBS was a false-positive. I stored up lots of breastmilk in those days. Our freezer was stuffed with breastmilk (an overstatement, but it felt that way when the occasional solid bag of breastmilk would fall out on us when we opened the freezer door).

It was during this time that I had some emotional breakdowns because at that point breastfeeding was my most confident area of parenting. That was the thing I had down, and I felt like I was being robbed of it. I remember in particular watching the "First 5" video on basic infant care that was given to us when we left the hospital. Phylicia Rashad (the mom from the Cosby show) was on the video talking about the benefits of breastfeeding and how breastmilk was the best thing for your baby - I broke down because of the thought that my breastmilk could kill Sarah and it wasn't the best thing for her.

There was another time when Sarah was upset and I knew that breastfeeding her would calm her down, but I knew that I wasn't supposed to. It was during the time when I was supposed to alternate between breastfeeding and bottle feeding her elixir.  I can't remember exactly what the issue was but I was extremely upset and it ended with Jonathan just talking me into breastfeeding Sarah and it calmed both of us, Sarah and me, down.  I think it had to do with me once again fearing that by breastfeeding her, it could kill her, but feeling that breastfeeding was exactly what I was supposed to be doing. 

Due to the requirement that Sarah needed to eat every three hours and, later in her first year of life, every five hours, there were some stressful experiences when she just wasn't wanting to eat and so I would fight with her to eat.  The "fighting" looked like me basically trying to get my boob in her mouth and coaxing her to suck all the while she is flailing her limbs and turning her head away from the food source.  Those times usually ended with me giving up and figuring that she had enough energy to survive a little bit longer and I would just be aware that at the first sign of hunger she needed to be fed.  There were other times when she would bite me and so the breastfeeding session would end prematurely in order to teach her that biting her food source was unacceptable.

Through many of these situations I learned the importance of handing over my anxiety to God and asking for peace unless I needed to be worried.  My trust in God increased greatly during this time.  I learned that I had little control.

Our last breastfeeding sessions took place after Jonathan and I confidently felt that Sarah didn't have CPT II so I was feeding on demand (as opposed to scheduled feedings).  The last two days included about 4-6 relaxing and beautiful times of breastfeeding.  Our routine included Sarah twirling my hair in her fingers while we looked at each other, and often she would fall asleep.  I've heard some people talk about breastfeeding as though they LOVED it and found it extremely spiritual, I am not one of those people but I enjoyed that it was something special that Sarah and I shared together and it connected us.     

What's Different Now?



The process of taking Sarah off treatment has been easy in some ways and in other ways it required adjusting our schedule.

Allowing her to sleep through the night has influenced the time she wakes up and her nap schedule. When I would feed her during the night, she would usually sleep-drink her 2am bottle and 7am bottle and then sleep until 9 or 9:30am. Now she is waking anytime between 6:30 and 8:30am. She is also taking two longer naps during the day.

Stopping the carnitine was easy. Sarah quite enjoyed the carnitine as she got older. She was a pro at taking it with her bottles. I regret not documenting it on video. I did try to take some pictures of her one day when she was sucking on her carnitine syringe.

I've noticed her urine smells differently now. I always thought her urine smelled weird, not fishy like some people complain of when they are taking carnitine supplements but it was distinct. Now it smells less distinct.

She seems to be adjusting fine to the whole milk mixed with her Lipistart. At first she was drinking less of her bottles but now she is drinking as much as usual.

Take Care of Ourselves Also

During all this time of caring and focusing on Sarah, we (my husband and I) apparently were unaware of our own health issues.

According to a doctor, my chest x-ray showed that I had tuberculosis (TB). It's dormant now but I had it in the past. Considering I was a teacher before having Sarah, I got TB tests every few years. Four years ago, my TB test was negative. So, within the last four years, I had TB. I don't remember ever being very ill in those last 4 years. The other weird thing is that none of my family members that have been tested have/had it. Sarah and Jonathan tested negative. I am confused as to how I could have TB and Jonathan didn't get it, but I am taking the medication for the next nine months even though it doesn't make sense.

Jonathan apparently has some kidney issues that the doctors can't figure out as of right now.

Family and friends have joked that we were so focused on caring for Sarah that we forgot to take care of ourselves.

One thing all of this has confirmed is to never go into a doctor's appointment thinking everything is OK. Go into appointments knowing anything is possible, hopefully it's OK.

One Month of "Normalness"

Well, we have survived more than one month of "normalness" and Sarah seems fine. We decided that the falling asleep during lunch was normal because she hadn't napped yet and she woke up fine. We also suspect that she might be teething.

I recieved a call from the metabolic clinic that Sarah's first carnitine blood test, taken a month after we stopped giving her carnitine suplements, started letting her sleep through the night and feeding her whole milk, showed her carnitine levels were in the normal range. This is a very good evidence.

We are still awaiting her enzyme assay results.