Isabelle’s condition qualifies her for things that tend to give me mixed feelings. She could qualify for Make-A-Wish, has qualified for an Icing Smiles cake, and Medicaid help. She also qualified for Early Intervention services through the Kennedy-Donovan center. From the day we brought her home from the hospital we knew she was showing a slight developmental delay. Honestly, It would upset me when we would take her to well-baby check ups and see how much she wasn’t doing. Yes, she had been through an major surgery that reconstructed her circulatory system, but shouldn’t she be sitting up? Taking a bottle? Smiling? Writing her next thesis on the impact of socialism on today’s government?
After the initial meetings, we set up a plan and in comes Denise. Denise is amazing. She sings songs, gets her attention and keeps it! She shows me the positive in every situation, every play scenerio. “See how she is reaching? We want to see that. She wants to sit up.” I would sigh a sigh of relief when she would leave because I knew that with each visit I would be told exactly how much she would be catching up.
Isabelle went from laying relatively still to slowly rolling over. Then she began to sit. Then she started to make the movement towards pulling herself up to furniture. She began to crawl after numerous visits of Denise singing “Rock, rock, rock…hands and knees, hands and knees…”. After a visit with the cardio-neuro team and the feeding specialists, we decided an occupational therapist was needed. And so we met Gail.
Gail would come on a day that Denise wasn’t there, but a few times they overlapped. Gail came with some great toys and introduced the idea of preparing Izzie mentally to eat. She gave me a special brush to prepare her gums and some exercises to get her jaws ready. Izzie went along with it, and enjoyed playing with the brush. Gail showed me how to feed her properly and wait for her cues, which I would have completely missed. She had awesome toys and Izzie seemed to enjoy fine-tuning her motor skills on them. Gail had great handouts and always had additional information that was very helpful. Izzie still loves her food and is successfully feeding herself. It’s awesome.
She also walked by the time she was a year old. I didn’t expect her to take off the way she has, but at 15 months, she is practically running around the house. Denise showed us how to fight the hypotonia with certain exercises and paved the way for this active little girl who loves being with her sister.
Having Early Intervention services have been a blessing to our family. No one ever wants them, but if you can have them, it’s a great service to have. It has encouraged me on days when I feel like she will never catch up. It has validated some of my concerns and offered solutions to them. At our last cardio-neuro appointment, the psychologist remarked on how social Izzie is, her appropriate responses, and how great her gross motor skills were. It made me feel better about her future and how can you not be grateful for that???
Monday started out as a typical day in our house. After getting the girls ready, Chris brought them over to daycare while I got ready for my day. I thought it would be nice to visit a fellow HLHS mom whose son recently had his first surgery at Children’s. As I stepped out of the shower the phone rang. Wrapping a towel around me I hopped over to the phone trying not to slip on the tile. It was the daycare. Addie just threw up all over the table. Awesome. Let me get dressed, I’ll come over to get her.
Texted my friend and apologized for not being able to visit but am glad I wasn’t bringing any germs into the CICU environment. At first Addie didn’t want to leave but after some coaxing she was convinced to put her coat on and come home. We had popsicles, some juice boxes and spent a lot of time running to the bathroom. It could have been worse.
At 2:30 Liz came home and we went to our hair appointment that I promised to make for her to color her hair. It was nice spending time with her since we don’t get the opportunity to do so that often. I got to hear about her english teacher getting let go and how weird the whole situation was. We both left happy with our red tints and I was happy that we were able to go. Chris was home by the time we got there and the temp Addie was starting to get decided to go away for the night.
I’m grateful I was able to take care of Addie, cuddle with her on the couch and give her popsicles when she needed them. In the past, I wouldn’t have been able to be there for my girls when the got sick. I would need someone else to come in and be the person by the bedside until I got home. This day was different, and I was happy that it was just the two of us for most of the day. Addie doesn’t get the chance to have one of us all to herself for very long so I was happy to be there.
Sometimes it’s hard to a Levin. Especially when other peoples’ choices make it hard for you to maintain relationships with them. The Levins are my father’s side of the family. A group of extremely bright, ambitious, argumentative sports fanatics. I love them all. I don’t see them very often except for the occasional gathering, and maybe that is partly my fault. The tensions brought on by my father and sister and me have made things slightly awkward for all and I haven’t figured out a way to stay connected consistently.
I never knew my grandfather, Robert Levin. I became acquainted through other peoples’ stories. He died of a heart attack shortly after I was brought home. He is one of the reasons why my parents were able to adopt me. At least that is what I have been told anyway. He was a self made man from the beginning. Apparently, the Levins were in the office furniture businesses, but his uncles weren’t interested in making him part of it. Rather than try to do something he wasn’t crazy about, he went to law school at Boston University and worked to pay his own way. He played the saxophone and met my grandmother at an afternoon tea. He became a lawyer, started his own practice in Quincy and moved to Weymouth with my Nana Helen. They had four boys trying to have a girl.
My Nana Helen was an amazing woman. She was extremely bright, had incredible tenacity and pursued law school herself. She also was very beautiful, I used to tell her she looked like a movie star in her wedding photo. She would always laugh at me. She wasn’t crazy about living in Weymouth from what I hear so my grandfather thought a shack in the middle of the state forest was an awesome idea. Let’s just say that didn’t go over well. The cottage is still in the family. It does not resemble the shack it once was and a person could live there all summer very comfortably. Just ask my uncles.
My cousins are amazing. I watched them graduate from Thayer, go to Boston University, graduate law school and become accomplished attorneys. My cousin Andrew was just listed in Boston Magazines Top 100 attorneys. Another cousin decided he wanted to join in the fun, went back to school and is part of the family practice. All of them are successful and all worked very hard to get where they are. It’s impressive when you work hard yourself to get to a certain level in one’s career. I can appreciate it.
I have mentioned in previous posts that my relationship with my father and sister are strained. When I was little, my dad would pick us up and take us to our Aunt Minna’s for a holiday meal. Either Passover or Rosh Hashanah we would go and be with our cousins. Cousins I hardly knew. My father didn’t socialize with his brothers and every time I would see them, I felt like it was like starting at square one with them. It was awkward but by the end of the evening, I would be following Gary and Andrew around or teasing Ben and Robbie. (Yes, I know his name is Rob but I can’t help it) When we would first arrive I would be stuck to either Laurie or my dad. And then I would find Nana Helen. I would sit with her and talk with her every time. I loved our conversations about computers, family history and of course, Israel. She was always going to Israel, and I would ask to see her when she got home. Of course I could see her when she got home, we could go shopping at Jordan Marsh and spend the day together. Well, with Laurie too but still…
When my father left in 1987 without a trace and with other peoples’ money, he took my connection to these relatives with him. Laurie, feeling uncomfortable and very envious herself would say things to me that would make me even more anxious about upcoming family gatherings such as how they looked down on us. It was hard on everyone and my uncles were very angry. Not with us, but with him. I didn’t know this at the time but when you don’t know what to say to someone, sometimes you don’t say anything. I was 15 years old, missing my father and hating him at the same time for putting me in this position.
My aunt Minna would still have her dinners, and would send my cousin Allan to pick me up. I know he probably didn’t want to drive to Plymouth to pick me up and the car ride was pretty quiet. Last year I thanked him for being so kind as to pick me up back in the day. It means more to me today than it did when I was 15. I would get invitations to different things but it became harder and harder to get myself to go especially after my sister left when I was a freshman in college. My last two connections were gone. I had to make connections and build relationships on my own. I wasn’t a little girl anymore relying on someone else to make them for me. They were all gone.
After I had gotten sober again, I recommitted myself to getting to know my relatives. I came to the understanding that they did in fact care about me and my sister, because they showed me. When I started to talk to one of my uncles about opening my adoption papers, he turned to me and said “If you need me to, I will stand with you in court. Let me know and I will be with you.” I still get choked up when I write that because this was a man I didn’t think cared about me at all. My cousin ended up being the one with me when we opened them. It was one of the most intense moments of my life and I am grateful Larry was with me for that.
I care when they get sick, or have hard times in their lives. I do my best to be available and to let them know that they are in my heart. I don’t see them every day, but I love them. It hasn’t been easy and I wish I was closer. I received my invitation to the annual open house and I already have it on my calendar. I hope I have shown them how much I appreciate them, and I look forward to seeing them soon.
Faith is something I find hard to come by at times. It’s the reason why I chose “Faith” to be Isabelle’s middle name. I needed to be reminded when I said her name to have it. It took me a little while but I found it after she had her first surgery. The Rabbi at Children’s would come and visit us, and I would ask questions on how could I keep it in spite of the unknowns hospitals tend to bring out in people. She was very patient and told me that all I could do is see what today brings. And then she would hand me a little challah and electric candles to celebrate the sabbath with. She brought a humanity to our situation that allowed for some hope to come in. Plus, those were good challahs.
Faith can also mean one’s religion. For example, my faith is Judiasm, my husband’s is Catholicism. I love being able to share my experiences and traditions with my family, and I know Chris enjoys sharing some of his too. Last night we spent the evening with our three girls, eating latkes and celebrating Hanukkah with other families. Addie won the dreidel game, which is something I never managed to do, and Izzie had fun wandering around eating applesauce. Every time we are in that hall- whether I am teaching Sunday school or at Friday night services- every time I am there I look over and see the framed certificate of all the names of the men who donated their service money to rebuild the synagogue. My grandfather’s name is on that list. My grandmothers, mother and aunts were/are members of the Sisterhood. They taught sunday school there, and hosted onegs (onegs are like a little ‘reception’ after the service. It’s how we celebrate the sabbath as a community). It warms my heart to have the children named after them celebrate in the same rooms. My family has been part of the synagogue since the 1940’s. And here we were, a mixed family of 5 enjoying latkes. It was awesome.
When Hanukkah is over we can get ready for Christmas and it will be Chris’s turn to share his traditions with us. I truly appreciate his willingness to raise the girls in my faith, and I do my best to honor him by having the tree, etc. I still am not a fan of the Rudolph the Red Nosed Reindeer, but as long as the girls enjoy it, I’ll make sure I am writing another incredible blog piece when it is on!
I grew up in Plymouth. Went to school here, worked here, learned to drive here, and prayed here. I love seeing my daughters walk down the same school steps I did. I love seeing my oldest march with the band down the same streets I did. This weekend was a great weekend to be in Plymouth, and I couldnt have been prouder.
The parade on Saturday was amazing. Well, once it got going it was. There was a significant delay and as we stood waiting I was concerned for Liz standing on Olmstead Terrace probably freezing her tush off. Once it got going it was great seeing all the floats that came down the street inbetween marching bands and bugle corps.
The floats were great this year with lots of detail. My favorite one was the Nathaniel Morton School replica. The images alongside the bottom of the float were photographs of my parents’ generation. It struck me that the phrase “where generations has learned” really applies at that school and about my family.
My mother and step-dad both graduated from high school at Nathaniel Morton. My sister went to 7th grade there. I spent 6th and 7th grade there, and met my dearest friend in Mrs. Humphrey’s class- Christy Thomas. I met Ken Horne, Joe Souza, Linda Maloof, Lisa Coveney, Summer Bucholz and Andrea Giracca there. Dana Beck was in my homeroom, along with Derek Gorman, Brian Hammond and Bonnie Blakesly. We used to watch movies in the common area outside the classrooms, we had our Olympics at the Plymouth Carver High school, and went on whale watches together. Jen Schroeder was in my class along with Sherry Greengross, Jed Benedict, Andrea Colucci and Josh Metta. The names bring me back to the dusty smell of the hallways and the cloakrooms. Some of these people became friends for life. Others I see around town and I remember them as they looked back then. Yeah, I know it’s 20+ years later but in my mind, you will always look the same to me with your collars up and jeans pegged.
Elizabeth went to kindergarten to the fifth grade at that school. I loved walking in and seeing it become a true elementary school. There was a great parents community there that I haven’t seen anywhere else. She had a great bunch of friends and had a great experience there. Her last day of fifth grade was bittersweet for me. She is the last of my family to attend that school.
As the marching band went by I saw that some of them were wearing pins and I saw the NMES on them. All of the kids who went to Nathaniel Morton were wearing pins celebrating the 100th anniversary. I was so proud of her and of that pin. To me it represented my mother, my step-father, my sister, and myself all walking those steps over the years.
I get the same feeling when I see Addie sit on the steps of Mt. Pleasant school. I met the best people at that school- Jill Furtado, Shayne Melchin, Peter Govoni, Jeff Parkhurst, Jeff Squillante, Chris Nadeux, Joe Pinzino, Skip Williams, Joanna Hoban, Colin Keohan and Jon Scharath. Some of these people I have remained friends with and have provided me with incredible support. It’s a blessing to see Addie enjoying it so much and I never get tired of standing in Mrs. Phillips’ old classroom. Of course, I can’t really be in there since it isn’t Addie classroom, but I didn’t have Mrs. Worcester so….
I love walking down main street and trying to remember what each business used to be and how the town looked back then. I love seeing the waterfront and running along the bike trail at Nelson Beach. Living in North Plymouth feels like it is the last piece of Plymouth that feels like….Plymouth. If you grew up here, you know exactly what I mean.
I came back here from Vermont so Elizabeth could know my grandparents and my family. I also came back to further my graphics career since I was so limited where we were. The icing on the cake has been seeing my children grow up here as well. I know my husband feels the same way about Rockland, and I am grateful and thankful for his sacrifice of staying here for me.
Seeing the Boston Strong floats, the Boston Police and the police car from MIT, I was so proud that they were included. Yes, the Red Sox one was pretty cool but seeing the marathoners- wow. Yes Boston is still 60 miles away but yesterday it felt like we were neighbors. It was awesome.
We met Dr. Levine on March 6, 2012. We had just been told that our baby had a severe defect, and that we needed an appointment at the Advanced Fetal Care center at Children’s for an echocardiogram. The first person we met at the center was the social worker. She went over the general procedure of delivery, preparation and surgery. We were asked if we had any questions and I had no idea what I wanted to ask about.
The tech doing the echo was not gentle. It was very uncomfortable and the baby pushed back whenever the tech pressed very hard against my belly. The heart was so small it was hard to get a picture, but soon in became apparent that something wasn’t right. I had to move into various positions for better views and none relieved the pressure I was feeling from the inside out. After being tortured for about 45 minutes, a woman with long curly hair, glasses and wearing a white coat came in. She introduced herself and began getting images for herself, relieving the tortuous tech. I liked her immediately because she didn’t need to press hard to get the images we needed.
Dr. Levine confirmed that the baby did indeed have Hypoplastic Left Heart Syndrome. She drew us a picture of a healthy heart, and then one similar to our babies. She explained the three surgical procedures of the Fontan Sequence. She tells the survival percentages and what the odds were. I asked about a transplant and was told that BCH likes them to try to keep their original anatomy for as long as possible, especially since newborn hearts are really tough to find.
She told us about some of her Fontan patients who did sports activities and how these children seem to limit themselves. She told us about the recovery times of each procedure, mentioning that the Norwood had the toughest recovery but the survival rate at Boston was 80%. She told me to stay away from Google, and to look up Little Hearts, Mended Hearts and CHOP website if I needed more information.
We left Boston feeling better about the outcomes and we saw her a few more times before Isabelle’s arrival. I had become connected to a few heart groups, such as Sisters-By-Heart and Heart Mamas. I would come to each visit with lists of questions about possible complications. Dr. Levine answered every one of them, and if she didn’t know something at that moment, she would call me later with the answer. We planned everything for the second week of August. She was going on vacation the week after but wanted to be around when she went into surgery.
Isabelle had her incredible Norwood and we saw Dr. Levine almost every day. She would make a point to stop by regardless of what her day looked like. She answered my phone calls full of questions about sats, arterial lines and feeding issues. While she was away, she had one of her most trusted colleagues be available to us.
During the Interstage process, I called her a lot. I called when Isabelle didn’t take in very much and I called when she did. I called about how many calories she should be taking, whether or not I should feed her past the 30 minute mark and whether her sats were in the OK range. One day I called and didn’t like how she looked. That’s all I needed to say. They were waiting for us at the ER in Boston.
Dr. Levine has been with us from Day one. She has been supportive every conversation we have. She is always amazed at how well Isabelle looks, and how great she is doing. She is just as proud as we are of her accomplishments and loves getting the pics I text to her. I couldn’t have asked for a better cardiologist to care for our daughter.
From the first time I shook his hand I knew that this man was going to be our surgeon. The mere fact that he called my husband back after he left a message with Dr. Emani’s admin that he wanted to make an appointment for us to talk about him possibly doing her surgery- that SAME DAY- amazed me. We met him and as he went over the various scenerios, he was very confident in the images he had seen of the echocardiograms that it would go well. He encouraged us to ask questions and of course (thanks to my Heart Mamas) I had a few. What are the chances for chylous effusions? Do you clip one of the sinus nodes? Could that affect her rhythm? I was told she had good rhythym and NO ONE was messing with her rhythym.
He backed me up in the CICU when I told the attending I wanted her extubated after she was breathing room air. I knew that the odds of her having an oral aversion were high and would only get higher if they kept that tube in. The opinion was “Why not keep in a few days? She’s having surgery on Monday.” Me, “Get it out, I want it out.” Dr. Emani: “There’s no need for her to be intubated, we have a few days and I am comfortable with it coming out.” Attending: 0, Me: 1.
The day of her Norwood was the most emotional day of my life. I knew about the preparation, that she was going to be on bypass and that her aortic arch had to be reconstructed. I knew the shunt would be put in. What I didn’t know is whether her heart would start beating after being ‘shut-off’ momentarily. I wasn’t feeling well almost a week out from the C-section and I saw Dr. Emani as I was leaving the restroom. I knew he was coming to talk to us so I practically ran him over trying to get into the family waiting room. He took us into the consultation area and apologized for taking so long. I’m sorry, what was that?
Apparently her arch was so small, he had to create a new one. Technically, she has two arches like McDonalds but only one of them works. He explained that it took a while for it to be stitched correctly and then went on to go over details of the surgery. He told us he used a Sano shunt and how he used a newer way to attach it to the heart muscle without causing too much damage. Went on to explain the conduit, and why he chose the size he did. He was very pleased with how well everything started back up again and was able to close her chest. I asked him what size her arch was, because I had seen research that suggested a tiny arch didn’t have great outcomes. “She had the smallest aortic arch I have ever seen.” Alrighty then.
He then went on to say he found something that he didn’t expect while he was in there. There was some tissue in the wrong place cutting off her subclavian artery. Basically she had some duct tissue cutting off the artery that feeds the left arm. He could have left it alone but one of the side effects is having one arm longer than the other. He decided that he would just create a new section of artery and fixed it up. The surgery took a total of 5 hours. I was expecting more like 8. And this guy is apologizing to us for taking too long. Really?
Our cardiologist is one of a few who read echoes for patients. She couldn’t wait to tell us how incredibly perfect Isabelle’s repair was. She had never seen a repair that was as well done as that one. Other doctors have said that to us too, but I was stunned to hear that from someone who reads echoes all day. Every time we had a clinic visit, Chris and I would hear how great her heart sounded. Now our job was to fatten her up.
When it came time for her second surgery, we had an informal meeting by her bedside about the next steps. She would have a cath, and then we would schedule the surgery. Her cath was incredible. Seeing her heart illuminated as the dye ran through was magical. I wish I had images from it. Dr. Emani thought they looked great and she had a few collateral vessles but nothing major. We were good to go.
Once again I handed her over to him and once again she came back to us. Her shunt was taken down, various pipes were attached to other pipes, and now all we had to do was to recover and go home. We were out of the CICU the next day and went home after a week. Everyone was happy with how everything looked and we couldn’t wait to go home and start living. After a few days home we noticed a red bump on the base of her incision. Long story short, we ended up at the ER with a staph infection in her incision.
When I saw Dr. Emani this time he was standing by her bedside shaking his head. He was upset at himself for not remembering that her body doesn’t like the dissolvable stitches that he used both on her Norwood and then on the Glenn. He promised he would fix her scar when he did the Fontan. He wanted to see everything to make sure she was healing. He knew everything that was going on. We ended up going home and then coming back after a night of profusely vomiting. Turned out she was having a reaction to the antibiotic. Were we ever going home? This is the moment, by the way, when I began to wonder if we were going to be able to leave.
We did, and since that time we have been in for a PEG removal and Mic-Key button placed. We have had a tear duct opened and her neurological development assessed. When I saw Dr. Emani walk into the cafeteria, you KNOW I had to talk to him. I drive my husband nuts. He calls me an ‘Emani Groupie’. Yeah. I admit it. I am enthralled with the man who saved our daughter’s life and gave her such an incredible chance at life. When I brought Isabelle over to see him today, she gave him a big smile and he was thrilled with how great she looked. He asked me how everything went the other day. I was thinking maybe he was referring to her tear duct surgery. Nope. He knew about her cardio-neurodevelopment assessment and wanted to know how she did. The man knows everything about his patients and is concerned enough to ask. Love it. I said to him “I don’t know what you did in there, but she has more energy than I could have imagined!” He laughed and said “Good! That’s good!” It is good, and we owe it all to him.
When you are first told that your child needs surgical intervention in order to live, once you get over the shock, you want the best surgeon doing that surgical intervention. When I am told by numerous people how great Isabelle looks, how pink she looks, I know that he is responsible. One of the esteemed cardiologists on the floor enjoyed using her as a teaching moment. She pointed out to the med students how difficult it was to see her cyanosis. When I asked her why that was she said to me “That is what happens when you get a perfect repair.”
Thank you, Dr. Ram Emani. Dr. ‘MacGuyver’. You have given us a child with boundless energy, a matching smile to that energy, and a chance to enjoy a relatively normal life. She can walk. She tries to run, we aren’t there yet. She goes up the stairs and down the stairs. She would do that all day if I let her. Isabelle is thriving in a way we didn’t expect, but are so grateful for. LHS
"You may encounter many defeats, but you must not be defeated. In fact, it may be necessary to encounter the defeats, so you can know who you are, what you can rise from, how you can still come out of it." -Maya Angelou