Tuesday, July 13, 2010

Heart

It is kind of ironic that Amalie has had to add a cardiologist to her list of specialists, given her brother's claim to fame. But in the end it has all turned out ok.

One of the PAs at the pediatrician's office noticed Amalie's heart murmur when Amalie was around six months old. Later, when the gastroenterologist listened to her heart, he turned to us and said "so how has the pediatrician said her heart is?", confirming that he also heard a murmur. We visited the pediatric cardiologist just to verify that nothing was horribly wrong. He did a 15-lead EKG, simultaneously providing us with an outstanding photo op of our "robo-baby". At the time, his conclusion was that the murmur was due to a kink in the aorta, and that the kink would work itself out when Amalie grew and her chest cavity became more accommodating for all of the stuff that needs to be there. He asked us to come back only if the murmur persisted at her one-year pediatrician's appointment.

At one year, the murmur was still there. Cardiologist visit number two was longer, because the EKG suggested that the anomaly was lower, which is an unusual thing for an infant. (Ventricles are supposed to be really strong!) After the longest and most boring ultrasound experience I have ever witnessed (Elmo and Cookie Monster couldn't even put a dent in Peanut's agony), the cardiologist announced that everything is perfectly fine structurally. The strange sound is apparently due to the heart being lodged at a funny angle up against something else. He said that the murmur will persist for several years before the heart has enough time to work its way loose. Sounds good to us!

Sunday, July 11, 2010

Allergies: when all else fails, eliminate everything

So much time has passed, and Amalie has changed so much and so have we, that I will fill in the details one subject at a time.

After I eliminated all dairy protein from my diet, Amalie continued to be sick. The pediatric gastroenterologist was, I think, skeptical that I followed his directions properly. But he graciously moved on to the next box in the flowchart anyway: radical elimination diet for me. What it meant was rice, rice, rice. I found ways to, for example, get in a breakfast-y breakfast: MMMM, organic Rice And Shine cereal with rice milk. It was kind of funny in a pathetic way. Every morning I would pout "But Maaaaa, I don't want Rice And Shine!" I was eager, though, to see what I was confident would be a remarkable transformation in baby.

Two weeks down the road, the blood in Amalie's stool began to wane. But it did not stop. The doctor ordered an upper-GI x-ray series to see if she had any gross structural abnormalities. Boy is that NOT how a baby likes to spend her time: strapped to a board, forced to eat glow-in-the-dark chalky formula, and rotated like a hog on a spit in a noisy machine while some random woman shoves an iPod disguised as a teddy bear in her face. Amalie screamed bloody murder throughout. But she did look cute in the tiny surgical gown, which featured space koalas (space koalas??). The x-rays came back completely normal.

I continued to receive the evil eye from the gastroenterologist, who was clearly convinced that I was running home every day and eating piles of tofu, bread, and cheese before breastfeeding my child. It was the last resort, but he ordered a colonoscopy. No infant should ever have to have a colonoscopy...it was so sad to see her don a surgical gown again (yep, space koalas, only with a purple background this time), then be sedated and rolled into the operating room. She tolerated this procedure much better than the x-ray...it helps to be unconscious. Coming out of anesthesia was a different matter, though!

The doctor had clearly never seen pictures this clear in a child so young (I will spare you the visual evidence): Amalie's colon was like a spent minefield. The tissue was covered in bloody sores, and in some case the sores had sores of their own. Allergic colitis was the diagnosis, and evil eye was the treatment, at least for me. The treatment for Amalie was more extreme: no more breastmilk. I had essentially failed to eliminate whatever was causing her distress, so now she would have to go on a special formula.

By "special", I mean elemental, expensive, and disgusting. We're talking Nutramigen AA Lipil. No, it's not the Nutramigen you see in the store, and it is not even the Nutramigen that is behind the locked glass at Walgreens. No, the AA stands for Amino Acid. The proteins in this formula are completely broken down into their constituent amino acids, thereby destroying their three-dimensional structure and their ability to wreak havoc in allergic individuals. This formula is high-tech. It is a prescription-only formula. It smells and tastes like (in my opinion) blood. And it costs approximately $50 for a 2.5 day supply. Thank, thank goodness for a few free samples, and for our really good insurance company, which has miraculously paid the lion's share of the cost.

Amalie cried when we fed her this stuff. We ended up having to taper off the breastmilk gradually, mixing it in with the formula in decreasing amounts every day. It was a long, tough road for both of us, and for Jon too. With time, though, Amalie learned to tolerate the formula, and eventually she came to recognize it as "hers".

The blood stopped. Amalie's omnipresent eczema waned. Behaviorally, it was like we had just released her from six-and-a-half months of psychological confinement. The moaning was suddenly replaced by real babbling--syllables and all. Amalie started showing more interest in moving around. I couldn't believe that my breastmilk--the one thing that was supposed to be sustaining baby and making her strong and smart--was essentially poisoning her this whole time.

To this day we are still not sure what foods trigger her allergies. Our learning is of the converse: we introduce foods one at a time to determine what she is NOT allergic to. The pattern is this: add one food, wait a week. If Amalie does not explode, we can add another food. If she has a reaction, we withdraw the food and wait two weeks for Amalie to heal before trying another food.

Two foods in particular have made her sick: a cheaper hypoallergenic formula (the only ingredient the two formulas do not have in common is Splenda, so perhaps that is the culprit?); and corn. However, we have been so slow to introduce new foods that we have as yet to determine whether she is allergic to gluten, dairy, soy, or fish. It is possible that Splenda has been the problem all along, because during my elimination days I drank a lot of Fresca. Who would've thought?

Amalie is looking so much better now. As I will elaborate on in a future post, there are still a couple of concerns about her developmentally. But Amalie is a wonderful child: she is friendly, trusting, smart, and socially precocious. Everything she does makes us hurt with pride. I hope that she will outgrow her allergies so that she does not have to be denied the tasty things that help make childhood so fun.

Tuesday, December 8, 2009

The mystery illness continues

A month ago, Amalie's pediatric gastroenterologist put both Amalie and me on a dairy-free diet, in the hopes that it would stop baby's bloody poop. At first things seemed to be going better: the blood waned, then stopped for a couple of days. But then we tried starting Amalie on rice cereal, and the blood returned with a vengeance. Twice. And then, after we stopped the cereal, the blood remained.

This made no sense to me, so we visited the specialist again. Duh, it turns out that non-organic rice cereal contains soy. Why the heck do they put soy in rice cereal??!? I thought it just contained rice. It is likely, then, that Amalie is also allergic to soy. The next step in solving the mystery is to eliminate ALL commonly allergenic substances, including soy, and slowly replacing them in my diet to see what evokes an allergic reaction.

We are now dairy, soy, gluten, egg, peanut, tree nut, and shellfish free. Ugh, that doesn't leave much that I can eat--rice, rice, meat, fruits, rice, veggies, and rice. Unfortunately, it appears that soy is a hidden ingredient in many things, and every day I discover one more thing that I'm still consuming that is off limits: toothpaste, my calcium supplement, Pam cooking spray. Sheesh. But I think I have corrected all of my errors now, and I am waiting eagerly to see if Amalie's blood dissipates. So far it hasn't. In addition, Amalie is becoming increasingly fussy when she breastfeeds, as if she is in pain. She's scheduled for an x-ray later this week, and the doctor has finally agreed to give her a colonoscopy if the blood does not clear up from this new diet. I'm getting a little panicked about her discomfort and what could be going on inside of her. If only we could bear this pain for her!

Thursday, November 26, 2009

Thankful

Every day is a day of thanksgiving for us. We are thankful for our sweet and much beloved son and daughter, and for the changes that they have brought to our lives and to us.

We are thankful that we awake to this shining face every morning.

We are thankful for every day that little Peanut lives, grows, loves, cries, stomps...

video


We are thankful to live with her through times of learning, times of pain, and times of peace.

We are also very thankful for everyone who has graced our lives, no matter how briefly or sporadically. You are all important to us. Happy Thanksgiving to all!

Wednesday, October 28, 2009

One roll forward, one roll back

This past Sunday Amalie rolled completely over from her back to her tummy for the first time. She's been working on rolling for several weeks now, but just couldn't figure out how to surmount the obstacle of her bottom arm. Way to go, Peanut! She also makes crawling-like motions (especially with her legs) when she is on her tummy. It is possible that she'll figure out this crawling thing early, even though the rolls came a little behind schedule.
Unfortunately, we have been unable to surmount a much more daunting obstacle: the mystery illness. We have switched my diet to dairy-free and replaced Amalie's formula (she usually gets one bottle per day from Dad) with this awful amino-acid based formula that smells and tastes, strangely enough, like the sugar beet plant near my childhood home. (Aminos are nasty. I used to work with powdered amino acids in my old pharmacy compounding days, and they are like a buffet from a bad dream. A feast of rooty, poo-ey, earthy surprises.) But the changes have produced no detectable changes in Amalie's condition, at least not yet. If anything, her diapers are a little bloodier than they were, and she is becoming slightly more uncomfortable every day.
The pediatric gastroenterologist urges patience, as it takes several weeks for cow milk proteins to clear the body. But it is a wait that no parent wants to make. What if we are wrong about what is causing the blood? Does she really need to experience this discomfort for two weeks? I have begun cutting soy out of my diet too, in case she's also allergic to it.
If Amalie's condition does not improve soon, I think we'll be back in the specialist's office, demanding a scoping and allergy tests. We'll figure this thing out as quickly as we can.

Friday, October 23, 2009

Poor baby... mystery illness

For about the past ten days, we have been finding blood in Amalie's stools: first just tiny little bits, but then more. As the blood increased, so did baby's discomfort.

Three visits to the pediatrician and one visit to a pediatric gastroenterologist later, the most likely explanation is that Amalie has an allergy to cow milk protein. The best way to test this hypothesis? Two words: elimination diet. Hers and mine.

One does not realize how ubiquitous cow milk proteins are in a typical American diet until one has to avoid them. I originally figured that heck, regular milk can be replaced by soy milk, butter and margarine by vegan "butter-like" spread, and cheese by no cheese, and that will mostly do the trick. But then I realized that most baked goods have dairy in them. And then I started to read labels. Off limits: processed lunch meats, hot dogs (even Hebrew Nationals!), all of the chips in the house (ranch, sour cream and onion, cheddar), pesto sauce, biscuits and all of the other breads we own, chocolate (duh!).

Amalie's health is well worth the sacrifice. Happily, there has been no blood today. I hope we've found the problem, or that she just had gastroenteritis from a tummy bug.

Monday, October 12, 2009

Learning, growing...and growing teeth

Our little Peanut is rapidly approaching four months of age...I can hardly believe it. We have watched her gain an understanding of cause and effect as she frantically kicks at the kickpad on her Gymini and learns how to shake a rattle properly for the first time (no, it does not have to be bashed on the forehead!). She is making all kinds of new syllables and noises, including an awesome gurgling noise. video



On our trip she rolled onto her side...once. Now she is doing it regularly. She hasn't made it all the way to her stomach by herself yet...darn that pesky trailing arm!

I believe we are on the verge of an additional milestone...teething. Yikes! Amalie is drooling like Taughannok Falls, she is chewing on her hand (and us), and she is being difficult when we try to feed her. Tonight we gave her a frozen washcloth and she chewed on it frantically. I guess this means we're in for some difficult nights soon!