NG Tube Dilemma

Tonight Audrey pulled out her NG tube for the third time in the past 10 days or so. She doesn't pull it out intentionally but rather steps on it while crawling around. Since she gets tube fed three times a day and each feeding takes about an hour, that is a lot of time to expect a 16 month old to stay still! I try tv, reading, playing with various toys, but she inevitably wants to crawl around and she's so fast I can't always pull the tube out of the way. The past few times we had grandma, an ICC nurse, replace it but we are out of tubes now so I would either need to go into Amplatz or have the home health nurse replace it. The thing it, I really don't want to replace it at all.

The main concern right now is not nutrition but hydration. We just talked to the pediatrician on Tuesday at her 15 month well-baby visit about this and since Audrey is past what her weight "should be" according to her previous growth curve, she could even lose a little and be fine. We would prefer for her not to lose any, of course. With her recent kidney surgery, however, if she gets too dehydrated it could really hurt her kidneys and we definitely don't want that! Ryan and I feel like the pediatrician is just trying to cover herself with wanting to tube in right now and admitted that the amount the dietician said Audrey "had to have to prevent dehydration" is a bit much. (40 ounces a day. The equivalent of 5 glasses of water. Some adults don't even drink that much!) She also said Audrey did not look dehydrated at that time and the tube had been out for over half a day at that point. The thing is, when the tube is out Audrey nurses A LOT more and also drinks from her sippy cup. I usually haven't had to pump at all during the times the tube has been out. I guess what it boils down to is I believe that her body still has the ability to regulate hydration and nutrition but the NG tube interferes with that process.

Ever since the stint came out, last Wednesday, her eating progress has really picked up! Almost every time I offer food she is now interested and at least puts it in her mouth. Between surgery and getting the stent out most days she didn't want anything to do with food. Lately she really likes strawberries, cheddar bunny crackers, avocado, and cheese. This gives us a lot of hope that we won't have to see more specialists or consider a G tube! A G tube would go directly into her stomach and requires surgery to place it. We did get considerable pressure to place a G tube when she had kidney surgery, which I understand as they want to do as few surgeries as possible. But it came down to that my intuition said we did not need that and it would just delay progress in getting her to eat on her own.

So for this weekend at least we are leaving the NG tube out. We are going to take each day as it comes and see what happens. We'll be monitoring her hydration and will go in to replace the tube if necessary. We are cautiously hopeful!

ihatepumpingihatepumpingihatepumping

In case you couldn't tell from the title of this post, I hate pumping. I'm only doing it 3-4 times a day and I don't have to care for a young baby on top of it, but I still hate it. For one thing, it's time consuming, taking anywhere from 15-25 minutes per session and I have a hyper toddler trying to 'help' me or crawl all over me at the same time. I can't always distract her with other toys and she always wants to be by mommy (of course, who wouldn't want to be by me all day?)

Another thing is that it doesn't feel nearly the same as a baby directly nursing. I don't get that awesome oxytocin rush, or at least not as much, and it just feels uncomfortable sometimes. Babies are so much more effective at removing milk and I will even be able to hand express an ounce or so after I've pumped. My pump probably sucks; it's not a hospital grade one, just a $40 ameda from craigslist (yes I know, used pumps and all). I have to hold a flange with each hand and I'm too impatient and bored to sit still for 20 minutes watching milk spray.

Thankfully, The past few days she has been nursing more and so I've needed to pump less! But I still long for the day when I won't have to keep track of so many things: her medications, how much I'm pumping, how much she's eating/being tube fed, her weight, appointments, researching, etc. It's a bit mind-boggling for sure.

So kudos to the exclusive pumpers out there! It's a lot of work and not much fun. But all worth it in the end, of course. I would go through this hassle ten times over if it meant she could get the best food of all: her mommy's milk

Delizioso!

We had dinner with the grandparents tonight at Buca's, and as you can see by the picture Audrey really enjoyed it! She sat on grandma's lap the whole time and tried salad, onions, bread, and cheese ravioli! She decided to smash it all over her face as well with a random bout of peek-a-boo :)

One huge benefit of having a ICU pediatric nurse for a mother-in-law is that she can change Audrey's NG tube! The other times we had it replaced Audrey had pulled it out at super inconvenient times and so we went to the Children's Amplatz ER where they must not be used to placing feeding tubes all that often. In addition to the annoying and time consuming paperwork and protocols, they were always very slow while putting the new tube in. This meant Audrey was being held down for a long time (for her, 10 minutes) and she absolutely detests being restrained while having her face messed with. So she would get all worked up, screaming and sweating, and then the nurses couldn't figure out why the tape wouldn't stick to her face. But not this time! Grandma had that bad boy inserted in less than a minute, I quickly taped it down, and we were all done! Plus this way we didn't have any pressure to check the placement with an x-ray (Grandma listened with her stethoscope and was able to draw stomach contents up with a syringe). I'm all for less radiation as she's already had at least 10 x-rays/ultrasounds in the last few months.

After Grandma changed her tube, we went out for dinner and it was marvelous to see her so interested in food! She had been making some progress before the surgery but it's taken her awhile to recover since then and have more than just a momentary attempt at eating. Tonight she interacted with the food for over half an hour!

New Feeding Schedule

We are home and doing well! Audrey has been sleeping more than usual and not eating much, but it's only been 5 days since her surgery so I'm sure she's still recovering. Her activity level is pretty normal though! Crawling around, cruising, and playing like crazy!

Starting today we are switching to day feedings only. This is the schedule the dietician from Gillette suggested: offer food 3 times a day (breakfast, lunch, dinner) and tube feed breastmilk afterwards adjusting the amount as needed depending on how much she ate. 0-25% of 200 calories: 10 oz, 25-50% of 200 calories: 5 oz, 75-100%: 0 oz. Also, tube feed her 7 oz in the early morning and late at night. If she snacks during the day, you can adjust those feedings as needed,

Ryan and I decided that 10 oz at once was a bit much. Plus she's still gaining weight rapidly. We are going to do 1 tbsp of coconut oil plus 5 oz breastmilk (1 tbsp of coconut oil has 120 calories which is about equal to 4 oz of breastmilk). For the late night/early morning feeds we'll probably do around 5 or 6 oz. We'll be monitoring her weight at home with the scale that Fairview Home Infusion (the company renting us the tube feeding supplies) gave us. I really think this is way more than a baby her age needs, so we'll see how she does.

Audrey's daily medications from top to bottom: multivitamin/mineral, periactin (anti-histamine that's used  to increase appetite), prophylactic antibiotic, ditropan (used to prevent bladder spasms), prilosec for reflux, and children's motrin for post-op pain (we alternate with tylenol).

The other exciting news I have to share is that my order of domperidone finally arrived! Domperidone is a drug used for various GI disorders that has a side effect of increasing prolactin which increases milk production. I had been debating for awhile on whether or not to try domperidone, partly because of the cost (about $40 for a 2 week supply), but it's difficult to find enough donor milk and I know there are younger babies out there who need the donor milk more. I tried increasing my supply twice by using various galactagogues (food or supplement that can increase milk supply) but was only able to increase by a few ounces a day. Hopefully the domperidone will work and I won't need to depend on donor milk anymore. Or better yet, she'll start eating more solids!

Hospital Hell

Audrey's surgery went very well and she is recovering great! She had a little trouble with pain while in immediate recovery but is on a good schedule of pain medications now and is comfortable. She has a stint (small tube attached to the ureter to help drain urine) that will stay in for a few weeks and a foley catheter that will be removed before we go home. Today she has been on a wagon ride around the floor and has drank a few ounces of breastmilk. We're very hopeful she can go home tomorrow!

Since Ryan and I both have a hatred of hospitals, and I like venting (aka complaining), here's a short list of things that have been unsatisfactory so far:

1) We were unable to get a room before her surgery despite knowing she would stay a few nights. So we had to drag all our stuff to the waiting room, drag it into the small post operative recovery room, and then drag it up to her hospital room. Pretty disruptive and annoying when we're trying to focus on Audrey.

2) Speaking of the post operative experience, the post-op nurse wasn't the greatest. We were stuck in there for almost 2 hours because she couldn't time the transfer right (Audrey was on a narcotic that only lasted 15 minutes and it kept wearing off every time the nurse was 'ready' to move us. So Audrey would get another dose and would have to stay another 15 minutes before we could think about transferring to our room. Since it was a narcotic they needed to monitor her in the post-op room until it wore off). Then when we finally transferred she kept bumping the crib into walls and doors which made Audrey cry in pain!

3) The nurse for our room last night didn't think the bandage on her surgical site needed changing, even though it was soaked through. Really??

4) There wasn't clear communication to us or the post-op nurses about what she could and couldn't eat or drink after surgery. We were told different things by different nurses and doctors and they kept changing their minds. She ended up being NPO (nothing by mouth) for the rest of the day and night but they said she could have ice chips. (Which is stupid, what 1 year old can eat ice chips safely?)

5) Nurses, doctors, child life specialists, etc. are constantly coming and going. They are all very friendly but verge on the side of being too helpful. All we want is to relax and try to help Audrey rest and the constant activity and "helpfulness" isn't helping!

6) The hospital protocols, fear of liability, and general way of doing things may be productive for them as an institution but it certainly isn't the greatest for individuals. For instance, right now she needs a suppository as the medications have a constipating effect. We've been waiting a few hours for it but it's delayed for some reason. We had many instances of this happen during our first hospital stay. One situation ended in her being woken at 1 am for an ultrasound scan of her arm with a technician who obviously wasn't good at working with children. He couldn't seem to understand why she was crying and wasn't lying still...

I'm remembering why I couldn't wait to escape from this place last December.

The Night Before

We are all set for Audrey's surgery tomorrow. It's scheduled for 12:30 pm and will last about 4 hours, but we have to be at the hospital by 10:30 am. Everything is packed and ready to go for our one over night stay (hopefully only one). Since she'll have stints (tiny tube that allows drainage) for about a month, she had a fun bath tonight and the three of us spent a lot of time together. Ryan is pretty worried about tomorrow but I'm doing okay with it. Since this isn't an optional procedure, unlike say circumcision, I feel at peace with everything. And I'm just desensitized to anything traumatic she has to go through anymore. I still feel bad for her but I'm not anxious and panicked about it like I would have been when she was a little baby or before all this happened. I'm sure the afternoon hours will go by very slowly though, and I'm glad our families will be there to support us.

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 Ryan, 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 (person who supports the coupe  physically, mentally, and emotionally during the birth) 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 the relaxed and supportive atmosphere when I arrived at their home. It's hard to really describe the atmosphere of a laboring woman in her own environment, where she feels most safe and secure. It's something you can palpably feel in the air - a certain energy I have never felt anywhere else. It was so moving and a humbling privilege to be invited into her labor space and she was incredibly beautiful and powerful. She was working so well with her body and completely in "labor land." Birth can be a sacred spiritual event, as well as a physical one, if you let it.

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 breast milk instead of formula and the OT (occupational therapist) 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

http://ellynsatterinstitute.org/htf/interveningwithfoodrefusal.php

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!

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 (CF) 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 failure to thrive 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.