Care, reprised (oh yeah..and Myla's shocking look as the GMEN defeated the Eagles)

Perhaps not updating this blog as much is indicative of less doctor's appointments or perhaps it is just a symptom of an incredibly busy schedule that involves two jobs and caring for an infant. There are couple of updates that are worth noting. Myla has had this persistent cold for about two weeks which has made it difficult to recognize if the modifications in her formula and feeding schedule are helping with her cough and reflux. We had a follow up appointment with our new GI doc at Robert Wood which also went well. Feeding therapy has been progressing well and our Myla June continues to develop before our eyes. She loves to stand with our support. She is so happy when she is standing. She is also beginning to sit without our support for extended periods of time (before tipping over. We usually catch her; however, sometimes we come back to her and she has already tipped).

Today was the day that we were to have had to make the decision regarding Myla's heart repair. We met with Dr. Khan (which makes me want to scream KHAAAAAAAAAAAAANNNNNNN! every time I say it...some probably know what I am talking about). She went through the opinions of the cardiologists at CHOP once more, and we let her know that we would like to wait and monitor Myla's situation to see if there are further signs of closure of the holes prior to making a decision about surgery. We will be checking in with her monthly and will have another echocardiogram in October. She let us know that there was one other data point that the "pro surgery" team mentioned, and this was the emotional state of the parents. Dr. Khan let us know that they seriously considered the fact that this was not the parenting experience that we had envisioned and by doing the surgery, Myla had a chance of a very typical first year of life after her recovery. Lindsey and I have had the discussion about how our idea of caring for a baby has been completely blown up by Myla's medical issues. We love her unbelievably and would not trade her for anything in the world, but this is not what we had expected. We mourn the loss of our idea of normalcy but also recognize normalcy exists on a spectrum and is very much a relative idea. It seems as though the "pro surgery" cohort was also capable of care.

This evening during Myla's last feeding, we soaked part of washcloth in apple juice and gently rubbed it on her lips and tongue. This was a strategy recommended by our feeding therapist. Myla loved it. She took it in her mouth and began chomping on it. This may seem trivial to most as most baby's love to put things in her mouth. Babies with food issues do not typically do these types of things. This is hopeful sign for Lindsey and I that with continued work and exposure to various tastes and textures, Myla's mouth will be ready to eat again soon. To quote Dr. Kiniaris, our new GI, "we need to get that tube out."

"Care" v. Care

Lindsey, Myla, and I met today at The Children's Health Institute at Robert Wood Johnson Hospital in good old New Brunswick for a second opinion regarding Myla's GI issues. It was there we met Dr. Soula Koniaris who is the chief of the pediatric GI department at the hospital. She took a thorough history and analyzed a stool sample, which Myla had happily supplied about 15 minutes prior. She placed Myla's stool on a test strip and dropped some sort of testing chemical on it. I asked her what she was testing for. She told me that she was testing for blood in her stool. Though we couldn't see it, it turned out that Myla did have blood in her stool, which is an indication of a possible milk protein intolerance. This intolerance could cause or exacerbate her reflux symptoms. Maybe a possible answer??? We also described the every morning occurrence of cough/wretch/heave/vomit and luckily (or not) Myla proceeded to demonstrate what that looks like. We informed Dr. Koniaris that this had not occurred prior to the NG tube being placed. After witnessing that, Lindsey and I heard the words that no doctor had said before. "We need to get that tube out." Her words and tone matched the sentiment that Lindsey and I have had since the day we placed the tube. Immediately, Dr. Koniaris called in the nutritionist in order to modify Myla's feedings so that she could begin to feel hunger again. We also heard, for the first time, the word "plan." Again, matching our sentiments exactly. This is one of the two items that Dr. Koniaris demonstrated today that showed care in its truest form. Her medical thinking was very much in synchronicity with our emotional need in the moment. The other item that demonstrated care was the fact that she was the one that met with us from the beginning of the appointment to the end. She took thorough history, she established the plan, and even made the follow up appointment for us.

It is protocol at CHOP for the nurse practitioner to do much the legwork only to have the physician come in for 5-10 minutes, make a few recommendations, and give us a script. That does not instill a sense care, but I guess it does serve as "care" in the broader sense. There is something missing in the medical field that leaves the consumer feeling disconnected. It is only the master practitioner that can serve both the medical and emotional needs of their patients. That is what Lindsey and I felt today.

As for Myla's precious broken heart, though Lindsey and I disagreed on how to proceed, we have decided to give her another 3-4 months. 50% of the cardiologists suggested to continue to monitor her status, allow her to continue to grow, and hope that the hole demonstrates signs of closure on its own. We do recognize that if any of Myla's symptoms worsen, we may have to modify our decision. Thanks to everyone for your kind words, thoughts, sentiments, and love. We feel it every day.

Here’s a riddle for you all….

What do you get when you put a group of world-renowned pediatric cardiologists in a conference room to make a decision about open-heart surgery for an almost 4 month old?

Give up?

The answer to this riddle is a lack of definitive answers. That’s right. Like so many other big decisions, the cardiologists left today’s case conference with 50% believing that surgery was appropriate and 50% believing that it was not appropriate. With that being said, I guess we, as parents do get a seat at the table, because our cardiologist has left this decision up to us, and guess what…. sometimes couples disagree. Not to sound cliche, but a strong couple can disagree without being disagreeable, and that’s where Lindsey and I are right now. I think both of us would feel much better if the doctors believed strongly one way or another, but that isn’t what we are hearing. The cardiologists that support the surgery now cite Myla’s feeding issues, her failure to gain weight prior to having the NG tube, and her slightly enlarged heart as their rationale. Those who are against the surgery now cite the restrictive nature of the hole (this could be an indication that it might close on its own. Think of a hose with water freely flowing out. Now think of what occurs when you put your thumb over a portion of the hole, it restricts the flow of the water, thereby increasing the pressure), the fact that her heart is only slightly enlarged, and the fact that she only has a small amount of fluid on her lungs as their rationale. Though it’s extremely frustrating to put another serious decision in the “lack of definitive answers” category, I can empathize with a professional that allows for different philosophical viewpoints to thrive. Our cardiologist would like us to make a decision by our September 26^th appointment. She would put in the paperwork for us if we were choosing to do have the surgery. If not, we can wait 3-4 months (that’s another whole Myla lifetime) and see if her hole is showing further signs of closure. At that point, if there is no sign of closure, we can proceed with the surgery. If Myla becomes more symptomatic prior to that point, I am assuming we could put the paperwork in then. Outside of her coughing and vomiting, which might not even be heart related, Myla is in no clear distress. She is a happy and calm baby who Lindsey and I are head-over-heals in love with.

It is part of my personality to want to “fix” things. I am a mobilizer and a decision-maker, which makes living with such ambiguity day-to-day so difficult. I think that is this reason that I have developed my googlamania or compulsive googling disorder. I try to learn as much as I can about the variety of medical issues that Myla is or might be experiencing. Lindsey hates it and to be honest with you, I am pretty sure that I hate it as well.

Again, you guys don’t know how much it means to Lindsey, Myla, and I to have all of your well-wishes. In times of such hardship, we can truly see how wonderful our support network is and we are so thankful.

A Brief Update

Just a quick update for our 8 followers on the blog and the rest our pals on facebook. We have a busy week this week. Tomorrow is the big cardiology case presentation at CHOP in which Myla's potential for surgery will be discussed. With all of the reading and research that I have done, I feel like I could put on some scrubs and participate in tomorrow's case presentation and hold my own. Unfortunately, we as parents do not seem to have a voice in this process. Even if we did, our voice might be a confusing one. I go back and forth in my head about the surgery. No parent wants to see their baby being carried away into an operating room for open heart surgery. At the same time, we see how happy and resilient our Bean is now without a fully functional heart. We could only imagine how vibrant and amazing she will be with a fully repaired heart. I am realistic in my belief that a repaired heart will not be the end of Myla's difficulties; however, I am hopeful that a heart functioning at an optimal level will relieve some stress on other parts of Myla's body and allow the healing process to begin.

This week's medical events for Myla include tomorrow's cardiology case presentation, an initial appointment with the feeding therapist at Children's Specialized Hospital (she will be going weekly), and a second opinion gastroenterology appointment at Robert Wood Johnson in New Brunswick. If the weather holds out, and we have time, we may also introduce Myla to Rutgers University.

"She Gives Me Religion"

I absolutely hated Hebrew School growing up. Sometime, early in my primary school years, my best friend Marty and I (two out of the 3.5 Jews in our grade in Medford) were separated in Hebrew school because of our hijinx. From that point on, each week, twice a week, I would do my best to get out of going to Hebrew School. It rarely worked. By the time I was a sophomore in high school, we had our confirmation class trip to the Holy Land. I didn't want to go...why? Because I hated Hebrew School. The only reason that I went was because Marty's parents were forcing him to go and I felt horrible leaving him to deal with those in our Hebrew School class. I went, and it was then I found religion for the first time. That lasted for about two years until my high school sweetheart exposed me to the beautiful world of agnosticism. This lasted (and still does to some extent) until Myla came around.

My alarm went off at 6am today. I hopped in the shower. When I got out, I looked in the bedroom and noticed Lindsey was nowhere to be found. I figured that she went in to Myla because she was coughing, but Myla was sleeping soundly. I came downstairs to my coffee made, my lunch made, and my breakfast in the process of being made. This was an amazing way to start the school year. My hero wife, Lindsey, gives me religion.

I was carrying around anxiety all day today. Myla's sweat test was Friday. This is a diagnostic test for Cystic Fibrosis; a life shortening disease that creates lifelong symptoms, the need for intensive medical intervention, and an average lifespan of about 3o years. The typical turn around time for these tests is 24 hours. Our test was on a Friday before Labor Day weekend. So we received our results today. Myla was negative and all of her blood work came back normal. I thanked G-d. I thanked G-d multiple times. Prior to thanking G-d, I prayed to G-d. Others, with their kindness and sincerity, prayed to G-d for Myla as well, and even others sent positive thoughts and wishes our way. The amazing support of our family and friends gives me religion.

I came home after my long day at two jobs to a loving wife and a smiling, singing baby. See http://www.facebook.com/?ref=logo#!/scott.a.roth if you can...and see my singing baby. We fed Myla, kept her upright, gave her the prisolec, lasix, digoxin, and Zantac, and then we put her to bed. That is what she is doing as I write this entry. Myla gives me religion.

A Good Dr. Day

Just a brief update for the readers. This morning I went back to work. The work day was fine. Leaving to go to work was very difficult for me. As I backed out of the driveway, I saw my wife holding my daughter waiving goodbye with my puppy on her back two legs looking through the screen door. It was like a scene from a movie. It was a pretty long drive to work. As I sat through the welcoming speeches, my cell phone buzzed, and it was Lindsey. We had a pediatrician appointment this morning for a weight check. Lindsey wrote "And the tally is Myla - 2, Mommy - 1. Myla barfed up her medicine. I also brought the Vera diaper bag that has no wipes and newborn diapers. I score 1 because Myla weighs 10 lbs 13 ounces." For those keeping track, that's 10 oz in 8 days and a solid 10th percentile. She is slowly climbing the growth chart. I wanted to interrupt the superintendent's speech and shout the news to the entire auditorium. I didn't. I just quietly smiled to myself.

Later this afternoon, Mommy and Myla met up with Gram at CHOP for her neurologist appointment. Lindsey called me to tell me that she was glad I didn't take off work to go because the neurologist told us that there was nothing neurologically wrong with Myla and actually questioned why we were even there. We questioned it to. It was a good news doctor day.

Tomorrow is probably the most nerve wracking day for me yet. Tomorrow is Myla's sweat test at CHOP. A sweat test is a diagnostic tool used to detect Cystic Fibrosis. Cystic Fibrosis is a chronic, life shortening disease. These thoughts made my stomach churn. I was screened as part of the pre-pregnancy Jewish Genetic Screening test. I am not a carrier of any of the 30 most common mutations of CF. Myla had the newborn screening and was found to be within normal limits. These tests are not foolproof but make it pretty unlikely that Myla has CF. Nonetheless, as a part, again, it makes my stomach churn. If there was day we needed your prayers, tomorrow is it. Thanks.