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.
Tuesday, August 30, 2011
Friday, August 26, 2011
"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.
Tuesday, August 23, 2011
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.
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.
Monday, August 22, 2011
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.
Friday, August 19, 2011
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.
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.
Thursday, August 18, 2011
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.
Tuesday, August 16, 2011
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.
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
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
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