We apologize that it has taken us this long to post new pictures and write an update but the past month has been a bit of a whirlwind for our little family.
So here it goes… At nine days old Amara had a rough day, she was nursing constantly from about 1 pm until 8:30 when we went to the hospital. She had been a noisy baby since day one, making all sorts of monkey noises and crazy little grunts. However, her breathing was really hard and fast and she was making all sorts of new noises that we had not heard before. She was also comfort nursing but having trouble regulating her breathing and sucking.
Mike and I were concerned when we first noticed but she seemed to be getting plenty of oxygen and was not struggling so we waited a little while and then called the pediatrician. He asked all sorts of questions and decided he thought Amara was okay and we scheduled an appointment for the next day. We called our midwife Jessica and she agreed that without any other symptoms Amara was probably fine and to just keep a close eye on her. But then Jessica remembered that I was Group Beta Strep (GBS) positive. This strain of strep lives in the nether regions of much of the population and during birth can (less than 1% of the time) be passed on to your baby. Common treatment is IV antibiotics for the mom during labor and delivery which is passed to the baby via the placenta, reducing the chance of infection. We choose not to take antibiotics and since GBS infection can be very dangerous for a newborn Jessica said we should call the doctor back and remind him I was GBS positive. Dr. Chi said that Amara was most likely fine but newborns are so fragile that just in case we should go to the hospital and be sure she did not have an infection.
So off we were to the emergency room; Dr. Chi sent us an hour and fifteen minutes away from home to Morristown Hospital because they have a children’s hospital and he said that community hospitals are “dangerous.” Here the insanity started, when we arrived Amara was still noisy and her respiratory rate was around 80 (which is really high). The doctor said that with babies they can show illness is weird ways and then crash quickly, high respirations are one of the symptoms to watch for. She ordered a full sepsis workup, which included a blood draw, a catheterization for clean urine sample, a spinal tap, and chest x-ray for possible pneumonia. They put Amara on IV antibiotics right away and said we would have to be admitted for at least 48 hours until all the samples could be cultured. Needless to say we were pretty upset at this point, especially me, since I still had all the crazy pregnancy and birth hormones coursing through my veins.
We were in the hospital for the next four days (I will try to be brief) while our strong little girl endured every test the hospital had to offer. The doctors felt pretty strongly that Amara did not have an infection but wanted to keep her on antibiotics until the cultures came back just to make sure. So they began the battery of tests to rule out other possibilities. Because of family history they ordered a full heart workup with an EKG and ultrasound. Which was all negative, though they did find a tiny hole between her atria which they assured us is very common, almost always closes itself within a few months and even if it did not, rarely causes any problems in life. Next came a procedure were the doctors pushed small tubes through her nostrils to be sure there were no obstructions in her nares, there were not. Amara had also had a CT Scan of her head to be sure there was no hemorrhaging in the brain as well as a scan of the throat and another round of x-rays for the pulmonologist. The main suspicion among the doctors was that Amara had laryngomalacia, or literally “soft throat,” meaning that the cartilage in the airway is underdeveloped and soft instead of rigid. This causes the sides of the airway to collapse onto themselves causing struggle to move air and lots of noise. This condition could be confirmed with a procedure called a broncoscopy where a camera is placed down the throat to see the airway.
We were unsure we wanted Amara to have to go through such an invasive procedure, especially since it required general anesthesia and another hospital stay. However, after much deliberation we decided that we, mostly I, would have a really hard time staying calm and happy if she had breathing episodes and I was unsure what was causing them. So a few days after we left the hospital we were back again. The procedure went smoothly and the doctor found that Amara did have laryngomalacia as well as silent Gastro-Esophageal Reflux (GER) which was compounding her breathing by inflaming the epiglottis. GER is very common in babies because their digestive systems are immature, often allowing stomach acid to come back up, causing spitting up or in Amara’s case a babies equivalent to dry-heaving. This was good news since layngomalacia is benign, very rarely needs any treatment, and is self-limiting. In 99% of cases the cartilage hardens in a year or two, we just have a noisy baby until then.
We have chosen not to medicate for the GER for now since Amara’s case is mild, so we are trying alternative treatment which mostly means trying to keep her upright almost all the time. Feeding, playing, and sleeping all at a 30 to 45 degree angle so the stomach acid stays down. I have also been watching my diet for foods she may be sensitive or allergic to, some main culprits for many kids is dairy, soy, corn, wheat, and acidic foods. Like the laryngomalacia most babies grow out of GER as soon as their bodies grow and develop a little bit more. Needless to say the whole ordeal was very stressful, mostly on us, since Amara was strong and brave the whole time.
Mike and I are still dealing with the mixed feelings about the healthcare system and western medicine which I will let him vent about at a later time. Overall she has been well since the hospitalization; she gets quite fussy in the evenings and demands to be held almost all the time. So it can be a little overwhelming but we love her so much all the attention and time is worth it. It is very difficult to see her in pain when she is particularly gassy or refluxing a lot but for the most part she is very happy and healthy.
As if the health scare were not stressful enough the next weekend we returned home from a visit in CT only to find we had been robbed. Although pretty mad at first we quickly decided it was just stuff and that means less to cart around with us the next time we move. Mike is still broken up about his guitar though since it was hand made for him in Costa Rica and is one of a kind. We also lost about 500 or more CD’s so we are a little strapped for music right now.
We did round out the crazy month with some joy, my sister Kimmy married her baby daddy Joe on September 27th and we all had a great time at her beautiful wedding. Amara was the belle of the ball, getting to meet all the family and friends. She was wonderful through the whole thing, slept during the ceremony, and danced the night away with her parents. Watching my little sister get married was an amazing thing, our families are all complete now and we are both growing in our roles as partners and mothers. Wow, life changes so fast.
In other news:
Mike is currently pulling mold out of his Kombucha, an ancient Chinese fermented tea that grows a mushroom of yeasts and bacteria, it is supposedly very good for you, chock full of probiotics, amino acids, and micro nutrients. Although I enjoy a bottle from the health food store now and again I am staying far away from the jar of mysterious brown liquid and floating gelatinous what-nots that now lives on my already cramped kitchen counter.
Mike has also decided to be a mushroom hunter and we have spent many afternoons walking out in our woods looking for Black Chanterelles and Chicken of the Woods, among other fungi. He has been very good about using field guides, the internet, and expert advice to keep us all safe. However, I do still make him eat everything first so Amara is not completely orphaned.
Anyway enough with all the talk, here is what everyone really wants…
