Amazing Things..

So here we are... one month and a few days post-op and we have seen some amazing things. Our Myla June is doing very well. Some cool developmental things that most parents find fascinating, we find to be incredulous. She pulled herself up a couple of times. When she is standing, she now holds onto things for support and shuffles herself around. She actually made it around our coffee table twice today...commence baby proofing. She is doing some great imitation of movement. She waves hello; however, she typically uses her full arm and most of her upper body. She can do clap hands once in a while, and with her favorite football team playing some great football, we are working on "touchdown" for the big game. Myla's main mode of transport these days is her rolling. She made it completely across our living room to the door or more importantly, to where her toys are.

Lindsey has single handedly transformed our basement to a baby friendly playroom fresh with toys, foam alphabet/number tiles (thanks mom mom and pop), and bins for storage. I mainly stayed on the couch in my pajamas when this happened and consulted. I am an excellent and lazy consultant.

On to some frustrating and exciting news....We are strongly considering a full-time, intensive day treatment program to work on Myla's feeding. This is both exciting and scary. I wish we didn't have to "reteach" Myla how to eat, but now that her heart is fixed, there is no medical reason that she shouldn't be eating. She has good days and not so good days. A good day is when she takes about a tablespoon of baby food without a struggle. A bad day is when she is actively refusing to take anything, crying, pushing the spoon away, and turning away. As I have mentioned in many of my posts, the feeding tube continues to wear on me. As much as it was a means to an end to help our Beany grow and thrive, it really restricts our lives. We have to plan food shopping, driving, dinner, and doctors appointments around her feedings. Even though we have amazingly supportive family and friends (Faith Bass, you are amazing for taking on a crying Bean for an hour or so), we always hesitate to ask for babysitter volunteers because we know what hard work it is to care for her...and the tube is still a tube..It still sits in her tiny throat. It moves when she sneezes or coughs, sometimes causing her to gag and vomit. It bypasses the first stage of digestion, which is when saliva breaks down food initially. And finally, it opens....yes...as gross as it is, it can pop open. We typically discover this by a wet shirt, floor, couch with a nasty smell. Its kind of just like having a tiny hole that leaks stomach contents. Nasty.

Anyway, we have an appointment at the Feeding Clinic at St. Joseph's Children's Hospital in Pateron, NJ for February 1st for an evaluation. We hope to be admitted to their 4-6 week intensive day treatment program which is daily from 8:30-4:30. My next blog will be about the roadblocks that we are having with the insurance company when it comes to getting Myla into a different program. Thanks for reading.

Back to Work.....

I guess it was inevitable. A result of Myla June’s amazingly quick recovery was that I had to end my tenure as a stay at home dad and return back to work. My feelings on this issue were mixed, and by mixed I mean 90% sad and 10% excited. As much as I might complain about the frustrations of my job, I do enjoy certain things about it. I enjoy the steady paycheck (which was/is sorely missed over the past three weeks). I miss the challenge of working in a school. I enjoy the collegial/team atmosphere as well. I guess those three things are enough to add up to the 10% of excitement. I was sad to leave the comfort of my home. I was sad to not be able to spend time with my beautiful daughter and catch all of those little amazing things that she does throughout the day. I was sad that I would no longer have the ability give my wife some well-deserved time off, even if it means 30 minutes more sleep, 30 minutes to take a shower, or 30 more minutes to just relax.

My first day back was not nearly as stressful as I feared it would be. This is thanks to my colleagues, who though would not admit it, went out of their way to ensure that I did not have a pile of work on my desk upon my return. They took the brunt of kids in crisis, angry parents, and stacks of paperwork that we deal with on a daily basis. I also came back to an environment of care and concern. I was greeted with “welcome backs” and “I am so happy to hear things went so well.” This was nice.

Myla is almost three weeks post-op, and she continues to thrive. Her scab has completely fallen off of her incision leaving a 2 inch long pink scar. We have a doctor’s appointment (actually 2) on Thursday, and we hope to be able to start caring for her scar with mederma and start some of the scar stretching techniques that we were given at the hospital. We also have our first Gastro appointment. We hope that Myla has gained weight since her hospital stay. Lindsey brought Myla to see Nancy, our feeding therapist, on Monday. She was so impressed with Myla’s progress. She is eating more baby food. She is expressing excitement in eating and has now developed a love for pickles and pretzels. She took a little from a bottle with the feeding therapist and the therapist wants to speak with our GI doctor about beginning to wean Myla from the feeding tube. My expectation is that this will be another very difficult process. Though Myla has a newfound excitement for food, she still does not associate eating with satiation of hunger. She needs to feel hunger. My sense is that she needs to feel hunger multiple times per day and then eat enough to make that feeling go away. This could take a while. It also could mean less sleep back to the days of stressing about her eating and fearing the weigh in at the doctors office. The upside, however, clearly outweighs the downside. I can’t wait to see her beautiful face without “tubey” stuck to her chunky little cheek. I get overwhelmed when I think of the idea of Myla being an independent eater. It’s something so basic and so fundamental, but for Myla, it is also something that is terrifying. Eating used to hurt her so much. It will take time, but I know my little girl will be eating. Our goal is to have her eating birthday cake by May 19, 2012. One journey ends and another begins.

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!