Recovery: Day 8

Well, here we are one week + one day post-op, and our Myla June continues to amaze us with her spirit and speedy recovery. Today, we had our follow up appointment with Dr. Khan, Myla's cardiologist. She got to the new and improved Myla. This new and improved Myla may have come down with small case of post-traumatic stress disorder. She once loved doctors' offices, nurses, waiting rooms, etc. This is no longer the case. From the minute we sat down in the waiting room at Dr. Khan's office, Myla showed off her new and improved lungs by screaming. This continued into the room where blood pressure was taken and an EKG was attempted. At CHOP, the nurse that did the EKG took about 2 minutes. We think Dr. Khan should hire that nurse. Dr. Khan's assistant attempted multiple times but could not master the art, especially with a screaming baby. We were able to console Myla before she went in for her echocardiogram. Results of the echo showed a fully functioning heart, with no murmur, no fluid around heart or lungs, and closed ASD and VSD. Dr. Khan also removed the stitches which was not fun to watch. I don't think Myla enjoyed it either.

Myla is still in some pain here and there is much more easily agitated. We aren't sure if its due to the pain or just escalated levels of anxiety. She is sleeping well; only awakening agitated a couple of times a night. She is still getting the majority of her formula from her feeding tube. Once she is completely recovered, we are going to dive in head first to getting her off of her tube. Yesterday and today, she did pretty well with the baby food that we gave her. She is swallowing a lot more and its taking her a lot longer to get upset.

The meals from our mealtrain have begun. They are delicious and filling. By not having to worry about dinners for a while, Lindsey and I can fully devote our time to our baby, which is great. Thanks again to the Strouds for organizing this and to all those who have signed up to for a meal. It means a lot. Lindsey and I are doing well. I get the sense that Lindsey is starting to want me to go back to work. She has taken to this house mommy thing pretty well and has her full line up of "programs." Though I can appreciate an episode of "The Feud" here and there..it probably isn't on my list of shows that I will watch twice a day. Love you Linds.

Home

I sit and write this blog entry from the comfort of my couch. Precious little Myla is sleeping soundly upstairs. We were told this morning, during the doctors' rounds that Myla would be discharged from the hospital today. Myla's surgery began around 8:15 on the 22nd. Her heart was stopped somewhere around 9:30 on the 22nd, and we pulled into our driveway at 7:15 on the 24th. If my math is correct (and its often not), then we are home 59 hours after she went into surgery and 58 hours or so after her heart was stopped, attached to a bypass machine, while Dr. Spray proficiently and efficiently made her heart whole. My mom called it both the 2nd miracle of Hanukkah as well as a Christmas miracle. I would add a third type of miracle for those agnostics, athiests, and anti-thiests out there...it was a miracle of science. Last night was another not so restful night of sleep. Each time the doctors or nurses came in to take Myla's vitals, give her meds, etc, she would wake up and cry a bit. She went back to sleep pretty easily which was nice. I can't say the same for Lindsey and I. We slept head to toe on the couch in Myla's room in the Cardiac Care Unit. Myla napped a good deal today and I think that we can expect the same for the next couple of days or so as she gets her strength back. She definitely is quicker to cry and more apprehensive than she was prior to surgery. Gone are the days of our smiling Bean at the doctor's office.

She is sitting up and playing with toys. It seems as though she is understanding her new limitations. She hasn't rolled over since the day of her surgery. She enjoyed napping on her side and the doctor said this was fine. We cannot pick her up from under her arms for the next 6 weeks.

I know that I say this over and over, but the well wishes from friends and family has been quite overwhelming. It has brought Lindsey and I to tears on several occasions. I am so excited to explain to Myla her story and the love and support that helped her mommy and daddy stay strong during the many moments that we almost broke. We truly love you all.

Recovery: Day 1

Our little Junebug never ceases to amaze us. Shortly after coming out of her sedation today, she was sitting up, smiling, and laughing with us. After lunch time today, Myla started fussing. Apparently morphine works for soldiers with shrapnel wounds during World War II, but has very little effect on Myla. They switched her over today to a combination of Tylenol and Oxycodone, which seems to have a pretty good effect. This morning when the cardiologist did her rounds, she saw Myla sitting up in her bed smiling and playing with her toys. That was a sign alone that she was ready to be transferred to the stepdown unit. We wound up transferring around 4ish, I believe. Its hard to keep track of time. We didn't sleep well last night. We were in a "sleep room." which is basically a 7 x 7 room with a bed and a clock. It was tiny, dorm like, bed that Lindsey and I shared. Our sleep was interrupted multiple times by a loud "code red" announcement over the hospital loud speakers, followed by a loud "code green" announcement. Then it was again interrupted by a woman knocking on our door to see if the room was empty. It was also interrupted multiple times by me being worried that I was taking up too much room.
The attending cardiologist also told us that there is a chance that Myla could go home tomorrow which is both exciting and terrifying. She is very stable. Her heart rate is good, blood pressure has come down, and has had none of the complications that we were warned about prior (knock on wood). She does the pain and I have a feeling that now that her heart is fixed, we are going to have to do some serious sleep training with her. She slept all day yesterday into this morning. Today, she only took about 1 hour worth of naps, and we are worried that tonight will be a long night.

The nurses here are some of the most remarkable and dedicated people that you will ever meet. Not only do they care of Myla, but they go out of their way to make sure Lindsey and I are as comfortable as possible. Our nurse tonight scoured the cardiac floor for a rocking chair for our room. Well, Myla is sleeping, which gives us a narrow window to get some rest ourselves. Thanks for reading.

We all are recovering

Things have been status quo for a while now. Myla is pretty stable and in sleepyland. She is on some serious medications to keep her sedated and to deal with her pain. There was a small issue with her IV not being placed properly, so they weren't sure her pain meds were working initially. She was sleeping and making this tiny little groaning noise from her little mouth. That is all fixed now and the groaning has stopped. The only other small concern is that her blood pressure is high. The doctors do not seem concerned as they thing its just because she is in pain. It is slowly coming down.

Lindsey and I are holding up very well. Its been a scary and emotional day. Two things stick out in my mind as being especially difficult. The first thing that was hard for me was watching our family, one by one, give Myla a kiss before she left the pre-op room with the anesthesiologist. Of course, the hardest part of the day was saying our goodbyes to Myla. The fact that she was already sleepy made it a bit easier, because we didn't have to worry about her crying or having a difficult time separating. We were also happy to see that there aren't separate incisions for her drainage tubes. Following surgery, there can be excess fluid building up in the heart and lungs. They are using the bottom of her big incision for the drainage tubes. That may be too much info for some of you. Sorry. Anyway, she still has wires and tubes coming out of a lot of parts of her. One by one over the next couple of days those tubes will go away. Dr. Spray told us this morning that we could be out of here in 2-3 days. He is a superhuman. Also, I would be remiss if i didn't mention the dedication and hard work of the nursing staff of the cardiac center. They have the perfect combination of knowledge, empathy, and endurance. I feel that our nurse, Jaclyn, already knows Myla even though she hasn't really woken up yet. Myla has attempted to roll over on 3 separate occasions, which is making Jaclyn really nervous because that can really hurt Myla. Now she knows that Myla is a tummy sleeper and no drainage tubes, IVs, central lines, or chest sutures are going to stop her! She has her mother's strong will!

Anyway, things are quieting down here. Most of our family has left for the day with the exception of my parents. I think everyone will sleep a little better tonight. Being the Winter Solstice, its probably important to mention that from today on, the sun will shine a little bit longer each day.

Surgery Day: Live Blog 3 - She's Out!

Dr. Spray just came in to our waiting area to tell us that Myla is out of surgery. Everything went well! They were able to just stitch the VSD rather than use any synthetic patch which is amazing. They also closed the small hole in the ASD with a small piece of her pericardium. They are working on taking her breathing tube out now and then we can see our little angel. Again, I am not a religious man, but I believe that everyone's support, thoughts, and well-wishes have really done a lot to boost Lindsey and I. Its an amazing feeling. Now onto the recovery. She is so strong, brave, and truly a magical little bean!

Surgery Day: Live Blog 2

We just heard from the our nurse that they were finishing up with Myla. From what we have heard so far, she did great. They did an echo cardiogram after the repair and things looked good. We are going to meet with the surgeon between 10:30-10:45 and he can fill us in with the details. Keep praying for our girl. It seems to have had a positive effect!

Surgery Day: Live Blog 1.

My only experience with a "live blog" is reading them on election nights. When I say election nights, I speak very broadly. For those who know me well, know that I am a politics junkie, and I find myself reading live blogs of election results in obscure congressional districts. I even got to the point once where I signed up for a "fantasy congress" league...but I digress.

I have had visions of handing Myla over to the doctors since we heard that she may require surgery. There were tears. There was anxiety, but she is in very good hands. We are held up here in the Ronald McDonald family waiting room on the cardiac floor at CHOP. They gave Myla some mild "happy" medicine through her tube and she went to sleep. The anesthesiologist, nurse anesthetist, nurse, Lindsey, and I wheeled her on her bed to the Cardiac OR and we gave her a kiss and they took her in. We then met with our surgeon, got a tour of the Cardiac Intensive Care Unit, and met up with rest of our family. Here we are. Drinking bad coffee and waiting for our first update at 9:30.

Surreal Countdown: 2 Days

I am on family leave right now from work as to prevent any germs from entering our house prior to Myla's surgery. This feels weird. I get to sleep a little later, stay in comfortable clothes for most of the day, and spend an amazing amount of time with my wife and daughter. It has all of the symbols of winter break or summer with none of the sentiment. It almost feels like the days before my dissertation defense or my licensing exam, but the acknowledgment at the end holds a lot more meaning.

Myla's surgery is imminent. Its very real right now. Lindsey and I go hours without mentioning it, and then one of us has a random question about our hospital stay or Myla's recovery. Lindsey is nesting. She cleaned the house this weekend. She has watered the plants, cleaned up Pearl's #2s from our little backyard. Maybe she unconsciously views this as a rebirth. Our dear friends Bobby and Tovah have established a mealtrain account for us and we are overwhelmed with the love and support that we have gotten on there. Its quite amazing.

Tonight is also the first night of Hanukkah. This is Myla's first Hanukkah and will be an extremely special one. Tonight we will light candles, say the prayers, and exchange presents. We will do this again tomorrow night. I am not sure what the following nights will hold for us. We have been told that Thursday we will be in the Cardiac Intensive Care Unit (CICU), and Myla will be in what's called a "Pod." We saw the Pod's over the summer. It is a larger open area with four hospital beds and constantly has nurses and doctors circulating. We will get a "sleep" room and Lindsey and I will rotate being bedside in the rocking chair. I will bring a book. There can be at most, 3 visitors (including mom and dad) at all times in this unit. If all goes well, Myla will be transferred to the step-down Cardiac Care Unit the next day. Here, we hope to have a private room where we can set up a shop for the next few days. We have bottled water, books, a computer, and hopefully a lot of positive news to sustain us. Plus, there is an amazing Hershey's Ice Cream station downstairs where we can drink frequent milkshakes. If, you ever find yourself at CHOP (which I hope none of you do), make sure you get a chocolate milkshake from downstairs.

This blog seems a bit disjointed, but perhaps that is how I feel right now. I will be updating the blog during/after Myla's surgery on Thursday. Our little girl is so strong and so brave and so damn happy.

Humbled.

This is the only word that I can use to describe the feeling that Lindsey and have gotten from the constant outpouring of love and support from our families and friends. I can hear my mom’s voice tell me “this is what family does” when it comes to supporting loved ones during turbulent times. I can hear my father-in-law’s voice tell us with certitude that the he “is not a religious man, but I firmly believe in the power of prayer.” I can both of my grandmothers’ voices, who I know are stricken with such sadness that Lindsey and I are going through this time, time after time, attempt to instill optimism and hope that Myla will be recover and become even stronger following her surgery. This is just our inner circle of family. Friends, colleagues, and voices from our past have also been heard. It is overwhelming at times, to even think about. I know that there is little else others can do to help Lindsey, Myla, and I navigate our way through this journey (unless one of you has a cure for a VSD or ASD that doesn’t involve open heart surgery…I am looking at you Dr. Lesneski). It’s very hard to answer that question or respond to the “let us know what we can do to help” statement. By sending an email, picking up the telephone, or text messaging, you are already doing what we need. To know you are thinking of us strengthens us.

There is nothing remarkable or heroic about what we are doing (and I am not fishing here). Much like the voice of my mother telling us that “this is what family does,” I will echo that sentiment in terms our situation. We love our daughter. It is because of the enormity of this love that we are forced to do what we have done for her. It is because of this love that we will continue to advocate for her, and its partly because of our support system’s thoughts, kind words, prayers, etc that give Lindsey and I the strength to continue to fight for our magical little Bean.

Most Surreal Countdown Ever.

Not much emotional gobblygook this evening; just some details. This Thursday we head to CHOP with our Bean for our consultation with Dr. Spray, the pediatric cardiothoracic surgeon that will be performing Myla's surgery. Following the consultation, Myla will have her pre-admission testing. This will be comprised of a chest X-ray, echocardiogram, and blood work. This is all old news for Myla as she has had multiple X-rays, echocardiograms, and a large quantity of blood taken. Two weeks from Thursday (Thursday December 22) Myla will have her surgery. We wanted to try to avoid being in the hospital for the holidays, but that is now unavoidable. Myla needs the surgery and this was the first date they had. I assume that a Children's hospital will have some festivities for the holidays, but this is in no way how planned on celebrating our daughter's first holiday season. We aren't really sure of any more details at this point. We have questions for the surgeon about the surgery, the recovery, how long we need to quarantine Myla before and after the surgery, and probably a hundred more questions will come up on our drive home from the consultation.

So today we are 16 days away and counting....16 days to love our little lady up, roll around on the ground with her, spin her in circles, and respect that fine line between squeezing her so hard because we love her so much and squeezing so hard doing further damage. We love you Myla June, you amazingly strong girl.

It’s harder because its invisible.

Well, I guess you can see her feeding tube, but you cannot see the fact that her little heart is working so hard to make the rest of her body work. Recently, Lindsey and I have seen what we call a developmental explosion with our little bean. She’s rolling over like crazy, babbling, and interacting with us so much, it seemingly masks any physiological dysfunction that may be occurring. It is this fact that made yesterday’s cardiologist appointment with Dr. Khan so difficult for us to accept. Myla has not gained much weight in the last month. As I had mentioned in my last blog, Myla has been vomiting more volume, so we had kind of expected limited weight gain. With all of her activity, we knew that she was burning a lot of what she was taking in rather than storing in the reserve tank, otherwise know has her thighs. Dr. Khan let us know that it was her opinion that we need to proceed with Myla’s surgery to repair the holes in her sweet little heart. If we continue to wait, we risk possible permanent damage to her lungs, which would lead to newer and even scarier problems. This news was not easy to hear, as our last appointment was a positive one with the news of her ASD closing by 50% and her VSD showing signs of closure. The concern, however, is not the size of the holes, but the amount of blood that is flowing through holes and the impact that the blood may be having on her longs. As Dr. Khan explained this to us, Lindsey cried, I asked questions, and Myla cued, giggled, and played with the paper that lined the doctor’s table. That picture, if it could be snapshot, is a perfect emotional translation of that moment. Mom and dad are reacting in the ways that we react. Lindsey is the most emotionally honest person I know. It is one of the reasons that drew me to her. I sometimes lean on being a dispassionate/logical problem solver when my stress is activated, and Myla is just being Myla; strong and sweet. I took the remainder of the day off of work to be with my wife and daughter and attempt to sort out the emotions that we were feeling. There was fear, anxiety, sadness, and anger. The feelings came out through tears, harsh words, and questions to whatever is out there…God…science….as to why our baby (or babies in general) are afflicted in such ways. In a previous blog, I spoke of doctors that care. I left around 3:00 to see my evening clients after making sure that someone could be with Lindsey when I left (thanks Glen). When I returned home, I found out that Dr. Khan had called Lindsey and spent about 50 minutes on the phone with her answering questions, providing insight and just supporting Lindsey. Dr. Khan gave us many words of wisdom. The words that resonated the most with me were after she had to reschedule our appointment from last week to Tuesday due to a family emergency she said, “Mrs. Roth, this not the doctor telling you this right now. It’s a human being to another human being. What I dealt with over the weekend was not curable. What Myla has is completely curable.” We are terrified, but at least our terror is related to a cure not the disease itself. Dr. Khan, you have demonstrated to us time and time again that you truly care about Myla. Thank you.

We did have one decision to make. We could opt for an exploratory catheter procedure to attempt to measure the amount of blood flowing to the lungs; however, the doctor believed the end result would still be surgery. So we have decided to forgo the catheter procedure and given the okay for Dr. Khan to set up a surgical consultation with Dr. Spray, the chief cardiothoracic surgeon at CHOP, and also schedule the surgery. We believe it will occur by Christmas. Our cardiologist suggested a pseudo-medical quarantine so to speak for the two weeks prior to make sure that Myla is not exposed to anything that would the push the surgery further back. So if you want a taste of the little Bean prior to surgery, email or call us soon because we don’t know how quickly things will move. I will do my best to continue to update this blog as it relates to our precious, magical Bean, our family, and this amazing, terrifying, loving, sad, and hopeful journey that we have embarked on. Myla, these writings will be a documentary of your strength and when you are old enough to ask mommy and daddy why you have a scar on your chest, we will read you your story.

We are just laypeople

I was planning on writing this post about all of the wrong decisions that we have made along this journey that my family has taken. Every time we tell Myla’s story, whether it is to a new professional we come across or a colleague or a friend, we rehash our wrong turns. I do not feel guilty for making these wrong decisions. Alas, we are just laypeople wandering around this quagmire with only the professionals that we entrust as our compass. We try to take the best data we are given, add it to our own expert knowledge of our daughter, and what we get is a foggy amalgam that typically leads us in multiple directions. Recently, this led us to a new feeding therapist, Nancy. Nancy seems very knowledgeable and has had a good deal of experience with “Tube Dependent” children. I just wish we had found her in July, prior to placing Myla’s NG tube. Perhaps we could have avoided that wrong turn.

Myla’s smile still leaves an indelible mark on my heart every time it shines, but recently, we have noticed a little less smiling. There is a little more whimpering, a little more whining, and a little more crying. This specifically occurs during her feedings (both tube feedings, and when we do our trials with solids). She has also been vomiting more volume, which is always deflating. We aren’t’ sure if its just a phase she is going through. One of my fears is that our smart little Bean is beginning to recognize the unpleasantness that she has to experience daily and my heart hurts thinking of that.

I recall a time when we were in the hospital over the summertime. Our family was there as were some close friends. We were celebrating the fact that Myla had just taken 3.5 ounces by bottle. This was not a frequent occurrence. Our jubilation quickly turned to despair as Myla coughed and vomited almost the entire feeding. Now, it’s more of a time and energy investment lost rather than the emotional investment back then. Her feedings, in general take about 45-60 minutes, followed by at least 30 minutes of keeping her upright. This means, even if she dirties her diaper 10 minutes into the feed, we really can’t change it for an hour and twenty minutes or so. If we violate the 30-minute rule, there is a big chance that our little Bean will throw up. We have to do this every 3 hours during the day. Recently, she has been vomiting a greater amount in terms of volume. Sometimes it seems as though it’s an entire feeding. We will see this week at her GI appointment if she continued to gain weight. If so, it’s both an inconvenience and a let down when she vomits. If she hasn’t gained much weight, then its an inconvenience, let down, and large waste of time.

Tomorrow night will be a first for us. Lindsey and I will leave Myla with her Gram overnight as we travel to New York State for my cousin Lindsay’s “A-Y’s” wedding. Though she has been left in the care of loved ones before, we have never left her overnight. We know Gram will take great care of her, but we will miss her and be anxious parents anyway. Myla does overnight very well to say the least. She was blessed as an amazing sleeper (who knows if its fatigue due to her heart or her McLelland genetics but either way, we are happy). Myla, don’t pull out your tube for Gram!

Been meaning to post this

I wrote this a couple of weeks ago, but never got around to posting...enjoy.

Did I Ever Stare?

I probably have stared, but I just don’t recall a specific time. My assumption is that most of you have stared before. Staring now has a different meaning to me. I am both sensitive to it and aggravated by it. At the same time, I understand it. Myla is 5 months old now and has a yellow tube coming out of her nostril that is taped down to her chunky little cheek, and the remaining 12 inches or so dangles behind her. The waiter at a restaurant, out of genuine concern, asked if she was okay while pointing to her nose. The older woman with a thick British accident informed us that our baby had something in her nose. I am happy to educate these curious bystanders as to the function of Myla’s Nasogastric tube. In fact, I much rather answer questions than catch the eyes from across the room. It is those who stared at the diner while we fed her that I am sensitive too. Part of this may be some distorted thinking on my part. Myla is a cute baby and people like to look at cute babies. But those who look away when I meet their eyes cause me to be skeptical.

We had some positive news a couple of weeks ago at Myla’s cardiologist appointment. We found out that Myla’s Atrial Septal Defect (the hole in the wall that separates the top two chambers of heart) had closed by about 50% since it was first discovered. This was very surprising and welcomed news. We also saw that that pressure of the blood flow across her Ventricular Sepal Defect (the hole in the wall that separates the bottom two chambers of heart) has steadily increased. This sounds like a bad thing, but is actually a good thing and is also a sign that the hole could be closing. Higher pressure indicates that there is tissue obstructing the blood flow. If there was no pressure, then the blood would be freely flowing from one chamber to the other. Myla’s body is still trying to figure out how to cope with this blood flow, so one of her arteries is mildly enlarged. This is something that we will continue to monitor. We have another echocardiogram scheduled for November, but for now, open-heart surgery is not imminent nor is it in Myla’s immediate future.

Myla is still taking no fluids orally. We continue to attempt Stage 1 baby food with her. For Myla, she still does not associate the idea of putting food in her mouth with getting rid of the feeling of hunger. We will continue this difficult work with her so that she can eventually become an autonomous eater. As always, we appreciate everyone’s continued support and positive thoughts!

On human needs....

Food is one of the most basic human needs. Eminent psychologist, Abraham Maslow, listed the need for sustenance as primary on his hierarchy of human needs. That is what makes Myla's feeding difficulties so perplexing. As many of you know, four days after leaving our July stay at CHOP and 5 days after the dropping the NG tube, Myla simply stopped sucking on her bottle. We were never told that this was a possible side effect of NG tube placement; however, in retrospect, it is more common then one would think. Every time that I reflect on that decision, I feel extreme resentment toward the doctors on the GI floor of CHOP for not going over the possible negative effects of the NG tube. I also feel guilty for not doing my homework, but enough about my emotional responses.

Let's get to an interesting philosophical question that has been sneaking into my synapses these days. We can all agree on the idea that eating is an extremely primal function. We need to eat to live. Interestingly enough, Myla has learned that she does not have to eat to live. Eating for Myla was either uncomfortable or plain old painful when she was eating. Even at 6 weeks, she figured out that she could eat just enough to stay alive and minimize the pain. At three months, she learned that she need not expose herself that pain now because the tube is filling her up. I think that we could also agree upon the fact that this type of learning is rather evolved. The interesting paradox here is that the more higher order thinking in this situation actually is much less adaptive for her than the primal need of eating to sustain life (as a sidebar, as I am engaging in this philosophical soliloquy, I itched my right eye with the hand that just handled extremely hot habanero peppers...not so evolved thinking there).

This leads one to the conclusion, perhaps that since Myla has lost this primal sensibility that all animals are born with, she needs to be retaught this and perhaps the only method of reteaching this is to allow her to feel hunger again. Myla now receives 6 feeds per day (every 3 hours) of highly fortified formula. If she is at all feeling hunger, it is not nearly enough to motivate her to eat. If and when (more likely when), we decide to wean her from her tube, we may have to take a leap of faith that over time, if we allow her to be hungry, that primal need to eat will kick back in, and we can hit the reset button. This process would include significantly reducing what we are giving her through her tube. This is also a very frightening prospect. She needs to gain weight to encourage that stubborn hole in her heart to close. If it doesn't close spontaneously, she needs to gain weight to be fit for surgery and to assist with a speedy recovery, but my lord, with each passing day, my disdain for that tube grows.

"I love my cereal"

I put that in quotes because it is an original lyric to a Sharon Roth classic song entitled "I love my cereal." The song was initially written for Myla's amazing cousin, Sydney (aka Syd Vicious aka Hurricane Sydney). My mom would sing it as she fed Sydney her cereal. My mother, not known for her tonality, actually concocted a very catchy little tune.

"I love my cereal..It is so good for me...I love my cereal...It tastes so heavenly."

This tune has been reprised recently as we have begun the process of introducing purees and cereal to Myla. We are not expecting miracles; however, Myla has been doing pretty well with it. We are going very slowly and following Myla's cues as to not have her develop another aversion. Tonight was amazing. Lindsey, Gram (Lindsey mommy), and I were singing and dancing all over the place, and the little Bean was loving it. She was smiling and singing and actually swallowing a lot (dare I say the majority of the food?) We are not close to being able to take out the feeding tube yet, but we are seeing some signs that we have possibly turned a corner.

Feeding Myla through her tube, on the other hand, is quite onerous. We have slowly gone up from 2.5 ounces every 3 hours during the day (4 times per day) to 4.5 ounces every 3 hours (6 times per day). The actual feeding takes about 1 hour to complete. Then, we must keep her upright for 3o minutes following, for a total of 90 minutes. This is part of our new gastroenterologist's plan to get Myla to feel hunger again. The goal is to totally get her off the overnight feed. Tonight, she will finish her last feed around 11:30pm and not eat again until around 7am.. Let's see how she does.

Myla had her follow up with Dr. Piccione, the CHOP pulmonologist. We like him. She weighed in at 12 lbs 10 ounces there (14th percentile), which must have been cool for Lindsey to see after not such a good weight gain the previous week. My hero wife has been carrying the load so to speak when it comes to the doctor's appointments. I barely have time to breath at work these days so getting out for an hour or two is becoming more and more difficult; however, there are certain appointments that I will never miss. That's it for now. Roth out.

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.

Selective Fast forward

Recently, my mind has wandered to the point of wanting to be able to fast forward. Most of the doctors believe that Myla will "outgrow" most of this. Once her GI system matures, her reflux should decrease and her cough will hopefully fade. By fast forwarding, we could skip the coughing fits, the vomiting, and the general heartache that coincides with these events. We could also fast forward through the heart surgery and her recovery when and if she requires it. We could fast forward all of our doctor appointments and the frustration with the lack of answers that coincides. We could fast forward the x-rays, the blood tests, sweat tests, swallow studies, and anything else that is thrown little Myla's way. Finally, we could fast forward to a point where Myla no longer requires a feeding tube for sustenance. So where does the downside fit in when there is so much upside?

The downside is what we would miss. We would miss her milestones, as simple as they they might be (she has recently noticed that she controls her feet and legs. This is pretty awesome, except when you are trying to change her and she is wriggling about). We would miss the joy that she brings us and the joy that she brings to her family (especially her grandparents, her auntie, and her uncles, her cousin, and her GGs). Though its difficult to accept, I would not use the fast forward option if it meant missing the little things.

I worry that returning to work in a couple of days will be a structural fast forward. I will count on my hero (my wife) to inform me and document Myla's day-to-day accomplishments, which I know she will carry out diligently. For those of you who are out there, reading this, and are wondering what they can do for us, I know that it would make me feel better if Lindsey and company during the days if possible. If you have an afternoon free, give a call, stop by and see my girls.

Today, the early intervention team was here, early. Myla will be receiving services, primarily due to her feeding issues, though they can't address the feeding directly. The good news is that Myla's motor skills (fine and gross) were found to be in the 5 month range. Her speech and language skills are pretty much on target, but she qualified due to her self-care skills (which feeding is a part of). They seemed optimistic that with appropriate support, Myla will learn to associate feeding with happiness and positivity rather than with pain and upset. Thank you to the early intervention team for their positivity. On Thursday, Lindsey will be taking Myla to her first doctor's appointment without me. This weighs heavily on me. This the neurologist appointment at CHOP. I am pretty certain there is nothing neurologically going on with Myla, but alas, I am just a layperson. We also made an appointment for a second opinion from a GI doc at Robert Wood Johnson. Our GI doc consistently tells us that he "likes Myla's meds." We are not so sure we like Myla's meds.

"How was your summer?" "Too short...."

(Myla June, Week 1...so advanced)

I don't know that I have ever yearned for the sense of normalcy that the school year brings. The countdown typically begins late July, but this year things are much different. I was at work for the past three days. I was greeted by supportive colleagues with their well-wishes and prayers for Myla (every time I hear this, I am grateful. It means a lot to me). I was able to utilize the skills that I have been trained to utilize. Though each time I left in the morning, I felt an overwhelming sense of guilt. I know that I need to play the role of the "breadwinner" while my Wonderwoman-like wife (yes, I do believe that Lindsey has superpowers), takes such amazing care of our little girl for the next 4 months. The hope is that Lindsey can return to work by January or so when things will stabilize to the point where we have a good routine, the doctors appointments do not come in chunks, and Myla "grows out" of her debilitating reflux (if thats what this cough really is). I go back and forth. Today I am thinking that the cough is reflux-related and that retching/gagging that occurs is exacerbated by her NG-tube (the NG tube is place in such as way that unfortunately, it keeps the passage way from the stomach to the esophagus open, allowing stomach acid/contents to travel more freely up and out. With Myla's reflux, it doesn't always come out, but irritates her throat, hence the cough . Her vomiting episode today was pretty typical reflux, sad whimpers, two tiny coughs, then part of her last feeding came up. I cleaned her up, changed her, and she was a happy, yet tired baby again.

We did get some frustrating news yesterday from our cardiologist. Just when Lindsey and I were beginning to come to terms with the idea of open heart surgery, our cardiologist consulted with a CHOP cardiologist who did not believe her symptoms were due to heart failure (which confused me because we have been told multiple times that she has signs of heart failure (frequent sweating, wet lungs, enlarged heart, enlarged lungs, poor growth), therefore, surgery would be unlikely. The CHOP cardiologist was going to bring the case up at the CHOP cardiologist conference in two weeks.

Even more frustrating then that was the idea that Myla's symptoms, mainly her cough and the loss of her suck when it comes to feeding may be related to a neurological problem....cue appointment with another specialist...so the tally is Pediatrician, Gastroenterologist, Cardiologist, ENT, Pulmonologist, Chiropractor, and now Neurologist. She is three months old. Anyway, a simple google search would tell that a typical baby loses his/her suck reflex at around 3-4 months of age. At this point, the suck become voluntary. Myla, being a tube-fed baby, has appropriately lost her suck reflex, but has failed to voluntarily suck, most likely because she doesn't have to...she eats from through a tube...

Anyway, school starts officially next Thursday. I will once again make my coffee the night before, be in bed by 10pm, and make some money for my family. This means more now than it ever did. I am hoping that the guilt I feel when I start my car in the morning will fade as Lindsey develops a routine with the baby and the appointments eventually wain.

I am brought back to a feeling from my childhood. I can hear the garage door in my childhood home rising at around 6pm indicating that my father was home. I remember jumping to my feet and running to him as he put down his briefcase. I remember the overwhelming feeling of excitement. I look forward to time when Myla runs to me and greets me as I did with my father.

You should watch her sleep

I just did for a little while. I do on most nights. I have never seen someone or something be at such peace. The settling and comforting sense of calm is in such start contrast to some of her worst moments during the day. We have started to go "swaddle-free," though I do not see this on a list of any developmental milestones. I am sure that Myla has inherited the McLelland-sleep gene. She sleeps because she deserves it, though she doesn't know that she deserves it. She definitely earned her sleep time today. We had two appointments. Our 9am with our cardiologist, Dr. Khan, started off going pretty well when we saw Myla had packed on another 3 ounces in 4 days. We live our days ounce to ounce or as most in the medical profession would prefer us to use gram to to gram. We have slowly crept our way from off of the growth charts to between the 5th and 10th percentile. This would strike fear in most families but it gives us a healthy injection of hope. Unfortunately, Myla had a very difficult morning filled with coughing attacks, retching, and vomiting. Dr. Khan was the 2nd physician who has stated that Myla's coughing fits make her want to cry. Sometimes, when Lindsey and I take Myla to doctors, we feel as though they don't really understand the severity of her cough. It is like bringing your car to the shop and telling them that it makes a noise when you downshift. They take it for a drive and can't get it to reproduce that noise. Myla reproduced that noise today multiple times. Dr. Khan is the one of maybe two physicians that we feel really wants to figure out Myla's cough. She is convinced the cough is not cardiac related; however, we feel she goes the extra mile to help us figure out what the etiology of the cough is.

Dr. Khan told us that she will be presenting Myla's case to a group of CHOP cardiologists and this will help determine if we are going to move forward with Myla's open heart surgery. This could occur sooner than we thought. We will keep you posted about this. I was comforted to know that Myla would most likely only be on the bypass machine for 10-15 minutes. I don't know if its pseudo-prescience or just my obsession with overanalyzing my daughter's medical issues, but it tears me apart to think of leaving her right before the surgery. Maybe my continuous imaginal exposure will make the real thing a little less gut-wrenching...let's hope so.

This afternoon was our 4th specialist that we had seen re: the cough. This time it was the CHOP pulmonologist. Outside of taking a very long time to see us, they seemed thorough and logical in their approach. Let's rule things out so that we can figure this out. Over the next week or so, we will be ruling out some very scary things and some more innocuous things.

Its almost my bedtime, which means I need to learn another lesson from my daughter and let my head rest and be at peace.

What we celebrate...

Thank you to everyone who has taken the time to read my blog and share our experience with our little Bean. I have gotten some feedback about the writings bring some to tears of both sadness and anger. Believe me, I know the feeling. I figured that I would take some time today and share off the celebrations as well. Myla has brought us such unbelievable joy over the past 3 months.

1. She keeps her head up like a champ. Great head control, neck control, and she can track Pearl with her eyes and head and Pearl moves fast.
2. Tummy time on the Boppy has improved greatly (see above picture).
3. She is cooing up a storm. Especially in the car. She engages in 20 minute conversations with the animals hanging from her mirror.
4. She's a great sleeper (though sometimes this worries us). At minimum, she sleeps 10 hours at night.
5. Her smile and coo combination is enough to melt anyone's heart.
6. She makes great eye contact.
7. She eats her hands, sometimes she even double fists.
8. She is 3 months old and wears 3 month clothes.
9. She loves grabbing and swinging her rattle.
10. She can sit in her bumbo chair.
11. We celebrate days that she doesn't yank out her NG tube.
12. She busted through the 10 lb milestone.

There are so many more, but I figured that I would share these for now. thanks.

The Blessing and Curse of the Tube

1. You must gather all of the necessary supplies:
PH Tape, a small syringe, The NG Tube with Stylet, KY Jelly (yes, you need to lube it up), Duoderm, Tegaderm, Scissors, Non-sting barrier film, sharpee
2. you must swaddle your loved one very tight, so she cannot squirm. Squirming makes things difficult.
3. Precut your duoderm and tegaderm so that you can act quickly once the tube is placed.
4. Apply non-sting barrier to baby's cheek.
5. Place pre-cut duoderm on cheek.
6. Measure tube from tip of nose to ear lobe and then down half way between navel and sternum.
7. Mark that point on tube with sharpee. That's how far you need to fish it down.
8. Dip the end of the tube in the KY Jelly.
9. Take the tip of the tube and began dropping the tube through the nostril. There are two points where it might get stuck: the septum and the gag reflex. If it gets stuck, just push it in and pull it back and eventually it will get through. If needed, blow in baby's face to get her to swallow.
10. Once it is in to the point indicated by the sharpee, quickly use the tegaderm to tape the tube to cheek and pull out the Stylet.
11. Use the syringe at the end of the tube to pull back some stomach contents.
12. Check the PH to ensure tube is in the stomach.
13. Repeat when Myla pulls, coughs, sneezes the tube out.

I hate doing this. I especially hate doing this when Myla is smiling at me right before. She doesn't smile after. She cries. She is such a strong bean though. She recovers so quickly. The day that we decided to place the N-G tube, was the 6th day at our stay at CHOP. We had many visitors that day. Many of our closest friends and family saw me like that had never seen me before. Up until 30 minutes prior to placing the tube, I was still joking, laughing, and having a good time. After that, I spent time staring at my baby's face and crying. I took pictures of her because I realized that these would be the last pictures of her beautiful face without what we now call her "spaghetti nose." Since the tube went in about 3 weeks ago, Myla has gained a pound and a half. At our 3 month pediatrician appointment today, she weighed in at exact 1o pounds. Not a big deal to most parents, but a huge deal for us. Lindsey cried. I smiled and we hugged. Our pediatrician entered the office with a giant smile on her face. We celebrated together. That is the blessing and the curse of the tube. It hurts her when we put it in. It causes a good deal of mucous build up to the point that she coughs and throws it up. It makes her sneeze and itch that side of her face all of the time. It makes her gag. She grabs it and plays with it in her doll-like hands. She tolerates her feeds. It makes her body grow. It makes her brain grow. She was talking up a storm in the car as we left CHOP today. That is the blessing and the curse of the tube.

Optimism...then emptiness.

Last night Lindsey and I were extremely pleased to get a call from the CHOP Feeding Clinic letting us know that they had a cancellation and could see Myla the following morning at 8:30. After a forty five minute drive south to the CHOP Specialty Care office in Voorhees, we met with a pediatrician, and nutritionist, an occupational therapist and a speech pathologist. We attempted to feed Myla via bottle, and she cried immediately when placed in the position for feeding. It was nothing we hadn't seen before, but we figured that we should show them and they would have some answers. Following the evaluation, the Nutritionist came back in the room and apologized for not having any answers and told us that they were not really sure what was going on. Children's Hospital of Pennsylvania is consistently ranked in the top 5 Children's hospital in the country. They have had no answers for us. Not since our first GI appointment there. It also appears that at times, that have a lack of interest in finding answers. For example, her cough, as persistent and painful as it is, we were told that as long as she is keeping down most of her feeds, we kind of just had to deal with it. They all should watch Myla has she coughs so hard, her breathing pauses, her face turns bright red and wretches. It is the worst sound in the world.

With every doctor's visit, Lindsey and I are hopeful. We tell Myla's story. They take a look. They may order a test that they state may not give us an answer, and then we leave. We leave empty. We leave heart-broken for our baby. We leave heart broken for our lives. We mourn what our life was like for the first month or so with Myla. The excitement, the elation, etc. Her smile brings that back, but then the cough brings the emptiness. We pre-mourn our future, thinking that this hurt, loss, and sadness isn't going anywhere any time soon. It takes its toll. Tomorrow we have her 3 month pediatrician's appointment then off to CHOP in Philly for her Barium Swallow Study. Its going to be interesting to see how they do a Barium Swallow Study with an infant that really hasn't swallowed much in 2 weeks. They are the experts.

The first two weeks......and then the next 10 weeks.

Myla was born a healthy and vibrant 7 lbs 2 oz on May 19, 2011 at Capital Health System Hospital Mercer Campus in Trenton, NJ. Outside of the amazing strength of my wife during the labor and delivery and instant head-over-heals love that I felt when I first met my Myla June, I was truly amazed by the skill, sensitivity, and warmth exuded by the nursing staff. This is a theme that I will most likely speak of frequently. Myla was born seemingly healthy with a mild case of jaundice due to a high levels of bilirubin (as I joked at the time, Billy Ruben sounds like someone I probably went to Hebrew School with). We stayed in the hospital for 2.5 days, and I was amazed that after 2.5 days of constantly being checked, probed, monitored, seemingly on the hour, the staff at the hospital was confident that we could take care of a newborn sans medical expertise.

On Myla's fourth day of life, we ventured to East Windsor Pediatric Group for her first appointment. We were taken aback when Dr. Grubin first informed us that he heard a murmur in Myla's heart. He told us that it was a loud murmur and that the louder the murmur, the smaller the hole in the heart typically was. He found us a referral for a local pediatric cardiologist who would do further testing to determine the nature of the murmur. We were able to get in to see Dr. Sadaf Khan at Heart to Heart Pediatric Cardiology in Monroe, NJ that Friday. Lindsey and I were very nervous and were disheartened when we arrived to hear that the main diagnostic test, an echocardiogram, could not be performed because Myla was not yet on our insurance. This test required pre-authorization and pre-authorization could not be obtained because blah blah blah, there are many other great blogs out there that dissect the ineptitude of the health insurance system in America, so I will refer you to them (specifically read the archives of Ezra Klein's blog at the washingtonpost.com). Anyway, Dr. Khan attempted to reassure us she would do what she could during this appointment, and once Myla was added to our insurance, she would conduct the echo. We were able to schedule the echocardiogram for the following Friday.

The echocardiogram was a surreal experience. The lights were low, Myla was completely asleep as we peered into to the four chambers of her heart. Dr. Khan took measurements and Lindsey and I stared with amazement as she instructed her assistant to jot down the data. I remember her words, her sound, and her look as she told us there were "some things there...nothing major...but some things." She later went on to draw us a rudimentary diagram of the heart and pointed out to us exactly where Myla's heart defects were. We were told that Myla had two moderate sized holes in her heart; a Atrial Septal Defect and a Ventricular Septal Defect. And so my pathological obsession with googling medical terms that still lingers to this day. Dr. Khan sounded optimistic that as long as Myla was not symptomatic, there was no need to treat either hole at that point in time. There was a good chance that the holes would close on their own. She did do the responsible thing by telling us that if the holes did not close on their own, the Atrial Septal Defect (ASD) could be closed using a minimally invasive cardiac catheterization; however the Ventricular Septal Defect (VSD) would require open heart surgery. When the good Dr. described the symptoms, she used the term "heart failure." scary. The tell-all symptom in infancy is weight gain...no matter what, as long as she was gaining weight, all was good in the world. Other symptoms were sweating while nursing, fatiguing while nursing, respiratory issues, etc...google it and you will see. She did also state that for babies that are not going adequately, they would require an NG tube to assist with the feedings. The idea of tube feeding our baby did not sit well with us then, and it does not sit will with us today; however, there is something to be said for going to our doctors' appointments and seeing a higher number on the scale week after week.

I am going to cut and paste a basic outline of the Bean's medical history that I prepared for our first appointment with Dr. Maqbool, the Gastroenterologist at CHOP:

1. Heart Murmur detected at first ped visit.
2. Referred to Cardio - echocardiogram found 1 Med ASD and 1 MED VSD
3. Cough began 2-3 week of life, began mild.
4. Pediatrician believed it was congestion. Attempted saline and aspiration.
5. Breastfeeding until week 4 averaging 10 minute feedings and would either sleep or pull away and cry.
6. mild weight loss between week 3 and 4 (went from 8lb 4 oz to 7lb 15 oz, however different scale, and she was weighed with clothes on.)
7. Pediatrician mentioned supplementing with formula which we did not want to do, came back for weight check at week 5 and she weighed 8lb 3 oz.
8. Went back to pediatrician week 6 b/c cough had gotten worse (we mentioned the cough each time). At this visit, she sent us for a chest x-ray which showed slightly wet lungs (symptom of heart failure). We then went to the cardiologist following wet lungs to discuss options. she had only gained 100 grams on the cardiologist's scale in 30 days. Cardiologist told us to stop breastfeeding, keep feeding diary and come back next week for weigh in. Prescribed .3ml Lasix in am, and .4ml Zantac every 8 hrs. Around this time, Myla began vomiting once per day.
9. During week 7, she average b/t 19-22 ounces of EBM (expressed breast milk) per day gained 80 grams in following 5.5 days.
10. Cardiologist recommending fortifying EBM with formula. Did this for 2 full days, first day took 18 oz, next day only 13 oz. Called cardiologist on Sunday after Myla had only eaten 7 ounces in 14 hours. She told us to stop the formula, not give the lasix, and take her to ER if she didn't take an ounce in the next hour. She took 2 ounces. She recommended increasing dose of Zantac to .5ml every 6 hours. Keep off the lasix. Currently taking 16.5 oz of EBM per day in the last two days. At this appointment she weighed 8lbs 5.5 oz.

**grunts, hiccups 4-5 times per day, vomitting 1-2 times per day. Not always following a feeding, but usually following coughing/hiccups or sudden change in body position. Consistently has 6 or more wet diapers per day, and 3 or more dirty diapers per day.
**Cough is usually dry; however, after crying, eating, or hiccuping, it has mucus. We aspirate and nothing comes out.
**Not a consistent burper, keep upright after feeding for 30 minutes, positioned her bed. Feeds much better in the middle of the night when she is asleep and swaddled. Try to feed her 1-2 ounces every 1-2 hrs. 2-3 ounces every 3 hours over night.
**She stops feedings either by crying or falling asleep.
** Arches her back and cries when she coughs, sounds like she is trying to swallow something down.

At this point, we figured that Myla had acid reflux (hence the Zantac); however, the diagnosis was not official until this appointment at CHOP. Dr. Maqbool prescribed Myla Prilosec and suggested we schedule an "Upper GI" to help understand of there were any anatomical abnormalities that may be causing her weight gain problems. We also scheduled an appointment with a doctor at the CHOP specialty care office in Princeton. That was not a fun appointment. That doctor told us that we had 2-4 weeks to make a decision about open heart surgery for Myla. The Upper GI took place the following Wednesday at CHOP. We were worried that Myla would not take the barium bottle. Myla did not take the barium bottle, so the radiologist technician proceeded to squeeze it down her throat. Coughing, gagging, choking, crying...repeat..Myla had the white barium all over her body. It was not fun to watch. The good news is that there were no abnormalities showing and it even showed no evidence of reflux (we later found out that this is a really crappy test for reflux). Myla took very little from the bottle over the next two days, which led us back to CHOP on Friday morning. This time it was to the emergency room.

I used to just write music

In college, I kept an electronic journal, Doogie Howser, M.D.-style for about 5 years on and off. Initially, I wrote consistently, highlighting the banality of my college life. Highlights included the isolation and loneliness I felt as a straight edge kid at a Chi Phi party; my breakup with my high school sweetheart, and my journey from lily-white Medford, NJ to the multi-ethnic campus of Rutgers University. As the frequency of my writing phased and my utterances became more sporadic, and the perceived intensity of my writings increased. I waxed poetic about love, friendship, loss, or at least I totally thought that I did.

Now something else is driving me to write. By writing, I hope to chronicle the joys, anxieties, frustrations, and celebrations that our little Myla June (aka The Bean) has brought us in her first three months as well as what is to come. I know that it is quite cliche to talk about the cathartic and therapeutic affect that writing can have. I don't intend on using this as a therapeutic outlet in its present form. My hope is that I will one day be able to reflect on this narrative as I reflect on my Doogie Howser journal from college. I will hopefully laugh. I might be moved to tears; however, as time passes by, my hope is that the the reflection itself will be therapeutic. My hope is that over time, this will feel more like a third person account of an extremely difficult and emotional time in our life. I also hope that I am aptly able to capture the incredible strength and spirit of my daughter. Unfortunately, the first three months will require some backtracking and summarizing. After that initial post, my goal is to update at least once per week, but hopefully I will be able to write about with each milestone, setback, success, celebration, etc