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.