Friday, February 28, 2014

A Beautiful Birth

So besides being Audrey's mom I'm also a huge natural birth fanatic! I actually enjoy researching all about natural birth, especially physiological home birth. (See here for some basics on what I believe about birth: http://www.trustbirth.com/beliefs.html). I deeply wanted to make this passion into more than just an interesting subject I like to read about so last September my husband, Audrey, and I drove across a few states to the Bradley Method of Natural Childbirth teacher training workshop. We took Bradley classes in preparation for her home birth and they really made a difference! So now I'm teaching my first series of classes to other expectant couples. I offered to play the part of doula (a labor helper) for my students and one couple took me up on that offer. I want to respect their right to privacy, so I'll just say that they had a fantastic natural birth in the hospital with minimal complications. The best part of that experience for me was not the actual birth but how the woman looked when I got to their home. It's hard to really describe the atmosphere of a laboring woman. To say that the air was heavy and hot and she was flushed and sweaty from the hard work doesn't do the reality of the scene justice. But it was so moving and humbling to be invited into her labor space and she was incredibly beautiful. Birth can be a sacred spiritual event, as well as a physical one, if you let it.

Tuesday, February 25, 2014

Pre-Operation Appointment

Yesterday we had a check-up/pre-op appointment with the pediatrician. She took one look at Audrey and her weight and said she will definitely talk to the dietician about lowering her tube feedings! Audrey has gone from about the 25th percentile (her growth curve during 0-6 months) to the 60th percentile at 21 lbs 15 oz! She is still gaining about 1/2 pound every week, which if her growth keeps up at that speed she will weigh around 40 pounds at 2 years old-insane for her. So no wonder she is not making much progress with eating on her own, she's completely stuffed and growing at the rate of a newborn.

During the appointment we also had a urine culture to ensure she doesn't have any infections before the surgery next week, and a blood test to check her iron and lead levels. A urine culture means a catheter insertion but thankfully they complied with my request to use lidocaine so it was a bit less painful for her. (I've been told by several nurses that "catheter insertion at this age doesn't hurt" which is like being told "circumcision for a newborn doesn't hurt"-completely ridiculous and wrong.) The pediatrician messaged me late last night saying "her urine doesn't look good, we are waiting for the culture results, but we still have a week before the surgery." So I am assuming that we may need to either change and/or increase her antibiotics. I'm hoping this doesn't mean we will have to postpone surgery! Her iron levels are starting to fall again, which isn't surprising as she doesn't eat many solids right now, so she may need additional supplementation.

One thing that is bothering me lately is how feeding therapy is going. Everything was great at first and they were so supportive of her being tube fed breastmilk instead of formula and the OT wasn't pushy at all with solids during the sessions. But last Friday she started telling me that we have to start this reward game to get her to eat. She proceeded to demonstrate with a toy Audrey wanted: she would say "you need to touch/kiss this food before you play with the toy," Audrey would get upset, the OT would put the food up to her lips, and then reward her with the toy. This sent off all sorts of warning signals for me and I told the OT that I was not comfortable with implementing this strategy as I don't want Audrey to start ignoring her internal cues of hunger in favor of external rewards and that we won't be using rewards/consequences with her anyways. (See here why rewards in general aren't the best idea: http://hepg.org/hel/article/463). The OT got a little annoyed and said "it's a myth that eating is an instinctive behavior, it's actually a learned behavior and how is she going to learn internal motivation if you don't use external motivation?" The first part I agree with to some extent, but the last part doesn't even make sense. I'm not very good at defending my ideas when confronted like that, unless it's something I know a lot about, so I just said, "well I don't have it memorized but I can surely bring back some information next time about it." She asked if I would be ok with using verbal praise. I feel that's a bit better but still not ideal. This last weekend I started researching about conventional feeding therapy and Ellyn Satter's website in particular. I found some very interesting information, which boils down to this:
  • Food or energy prescriptions: Children vary greatly with respect to how much they need to eat. Calculated targets for energy intake can drastically overestimate or underestimate the child’s needs and increase the child’s resistance and/or discomfort relative to eating. In the long run, pressure to eat makes the child eat less, not more.
  • Positive reinforcement: Children eat because they want to. Praise, compliments, rewards, and other forms of outside reinforcement take away the child’s inborn desire to eat and pride in mastery

I emailed her dietician and OT some of these articles and am awaiting a response. Ryan and I both have been feeling like OT isn't doing much for her, especially at $250/half hour session. Any improvements she's made have been at home and not really as a result of anything we've done in therapy (especially since at most of her sessions she's not interacting with food very much and I'm usually just getting the OT up to date on recent events). We will definitely be reevaluating our current plan and medical team after the surgery!

Tuesday, February 18, 2014

Genetic Testing- No Small Thing

We got the results back from the genetic testing done a month ago: everything is negative! She had blood drawn and sent to the U of MN Cytogenetics Laboratory for a CGH analysis (comparative genomic hybridization) in January. The results took so long to come back because they had to analyze her DNA for any added or missing chromosomes associated with  known genetic disorders. Thankfully, there were no abnormalities detected, although this analysis only checks for certain common genetic disorders.

The results we got last week from the Cystic Fibrosis test were not quite so positive. She was found not to have CF but she does carry a mild form of CF in her genes. The mutation is called (TG)11-5T variant. This test was a blood draw taken on the same date but was run separately from the above sample. The testing was similar though; Ambry Genetics Laboratory ran sequencing and deletion/duplication studies of the CFTR gene.

So while we're thrilled that she doesn't have the CF disorder, it was hard for me to learn that she is a carrier of CF. This also means that either I, the sperm donor, or both of us are carriers of the mutation as well. The cryobank tests for several genetic disorders, including CF, but they don't test for the variant Audrey has. Our genetic counselor is getting more information about when and how the testing for CF is done there so she can clarify the possibility of the donor being a carrier. Understandably, the parents of Audrey's half-siblings are worried about this as well.

It's possible for me to have genetic testing done on myself to see my carrier status, but it's extremely expensive and we are already struggling financially. I'm more concerned about this than Ryan is regarding our future children as it's possible for them to either get CF or become a carrier.

If only one parent is a carrier then the baby has a 50% chance of being a carrier. If both parents are carriers than the baby has a 25% chance of having CF or related symptoms. Apparently 10% of the population is a carrier of CF so it's not all that uncommon, and even if a person has CF that doesn't mean they have the classic form that is commonly thought of. Someone could have CF and not even know it if the symptoms are mild enough or non-existent.

So although we're glad to know that the cause of her FTT probably isn't a genetic disorder, this experience was a bit like opening a can of worms. Now we know about the CF carrier status, while we probably would have remained blissfully unaware of that otherwise. But at least Audrey will have that information when she wants to decide about having children, whereas Ryan and I were completely blindsided by his infertility diagnosis, also a genetic condition.