Boston Children's Hospital, HLHS

When Geography Matters.

Today Isabelle had an appointment with Dr. Sadhwani of the Cardiac Neurodevelopmental Program at Boston Children’s Hospital. She was not happy being trapped in the car for over an hour and decided that the chest clip on her car seat was far too annoying to bear. By the time we reached Hanover she was halfway out of her car seat demanding goldfish. I complied, and tried to keep her amused in spite of the “No.” I kept getting from the back seat.

“Do you want your milk?”
“No.”
“Can I get your tummy?”
“No.”
“Do you want to sing a song?”
“No.”
I turned to look at her at one point and heard “Noooooo!”

You get the idea. She was not happy. Neither was I since I had to listen to more discussion about the Patriots, balls, deflated whatever, and what an ass Goodell is all the way in thanks to the various sports stations in the area. I welcomed the “Traffic on the Threes” to break it up a little. I even tolerated Jon Keller as he shamed the Boston Olympics peeps for being stupid enough to think the City of Boston would want the Olympics here with that up and down voice he has when being condescending. Or is that really how he talks?

After a cookie, goldfish and a few “Look Izzie, the city!” exclamations, we made it to Longwood. Usually it takes us about an hour to get to BCH. Today was a little more than that but we were still on schedule. We figured out how to get to Farley through Fegan (only BCH peeps would know what that is) and to the 6th floor we went! She was weighed and measured. She didn’t cry. There wasn’t any sign of any distress of any kind. As a matter of fact, when we were in the lobby waiting for an elevator, Izzie exclaimed” I want to see the doctors!”

After waiting a little bit the doctor came in and greeted us with lots of activities. Izzie was going to play with the “toys” she brought in. Izzie wasn’t keen about sitting at the table but relented when she saw the different items she would be playing with. And so it began. The repetitive questioning about which crayon was which color, did she know her shapes (she did. She even knows octogon but we didn’t divulge that information) and which duck was bigger commenced with little bribery. Izzie enjoyed completing each task. Perhaps it was my expression of joy (and relief) when she recognized objects appropriately. Soon she learned that every time she completed a task, we were so happy so she went along with what the doctor was asking her to do.

We played in the hallway. She ran when asked, tried to hop on one foot and jumped with two feet. The doctor was happy to see how well she moved but noticed that after a little while she began to breathe heavy. We shrugged it off, she breathes heavy but it doesn’t stop her. It didn’t this time either. Izzie proceeded to run after a soccer ball and go up and down the stairs to show coordination. Today she took some steps by herself without holding onto anything. First time ever. Chris and I were thrilled.

The doctor gave her a snack of crackers and juice to give her a break and reward for her hard work. Izzie obliged the doctor and completed a few more tasks with some prompting.  I could see that she was showing signs that she was over it with the puzzles and if this lady asks what color this crayon is one more time….The doctor knew she was running out of time, so she offered Izzie the chance of a lifetime- to cut paper with scissors.

“Izzie, do you want to play with the scissors?”
Izzie’s eyes widen in amazement and she responds with a resounding “Yes!”
“Ok, three more pages and then you can have the scissors.”
If Isabelle could say “Really?” in appropriate context, I think she would have at that moment. The next few pages were an agonizing “Izzie, do you see the picture here? (flips page) Ok, where on this page do you see that picture?” “Scissors. I want scissors.” “Ok, soon you will have the scissors but I need you to answer this question.” I bet you know where this is going.

Eventually Isabelle was able to use the scissors and she cut paper for the first time ever. I am not sure Chris was too thrilled that she learned this skill but I was happy she could do things I didn’t know she could do. Including use scissors. The doctor then told us that she would gather the results and let us know what her thoughts were for Izzie. After a few minutes (and for me a few text replies later) she came back in and I prepared myself to hear the results.

She did incredibly well. It is rare for her (the doctor) to say this but she agrees with the staff from Mt. Pleasant and felt strongly that Izzie did not need services any longer. She reached her milestones appropriate for a three year old. She is ready for preschool emotionally, socially, and physically. She may need a medical plan because of her HLHS, but other than that, she is on point for where a heart healthy child should be at age three.

I thought back to our first appointment with the Advanced Fetal Medicine center where Dr. Levine told me that our child may be significantly delayed and a few IQ points less than my other two children. The memory of sitting there not knowing what the future held for us struck me. The fear enveloping me, not wanting to have hope because what if I get my hopes up only to not be able to take her home with us. And the thought no one wants to admit they have “What am I going to do if the child is significantly behind the others?”  Yeah. I asked myself that question as I sat listening to the obligatory statistics Dr. Levine had to tell us. And then I heard “Tennis.”

“I’m sorry, what?” I asked not sure if I heard her correctly.

“One of my kids plays tennis. Another is a gymnast. Some are delayed and some are right where other kids their age are. Some only are a few points less than their siblings are on the IQ scale.”

And here we are. Izzie is meeting her milestones. Sometimes I wonder if it was her high oxygen saturation levels after her Norwood that allowed her brain to grow the way it was supposed to. Other times I think it is the incredible staff at the Kennedy Donovan Center who sang songs and engaged her every week. And then there is her surgeon, Dr. Emani, who did one of the most perfect repairs other cardiologists at BCH has ever seen. (Direct quotes people- I heard them say it) Or maybe it is the fact that Chris and I have put our differences aside, and parent our girls together. We try hard to be available for them and provide stability for them, which is essential for brain development.

Whatever is the reason, Izzie is ready for what every three year old is ready for- playtime and snacks. Ok, playtime, circle time, recess, fun activities, letters, and maybe a few snacks. My hypoplast is ready for whatever her school path will take her. Thank God we live an hour away from the best hospital in the world we could have gone to. Thank God I live minutes away from where they live with their dad so I can be there in a flash if he needs me or they need me. Thank God I live in a state that provides supplemental medicare (thank you taxpayers, I mean that) on top of her health insurance so we can provide her with the care she needs. Thank God we live in a country where we have religious freedom to pray to whatever God we need to pray to and a healthcare system that will not leave her behind because she was born with a condition she didn’t ask for. Thank God. And so I will.

HLHS

Echos of Denial

So here we are with 2 days until the fundraiser and one day before Isabelle’s sedated echo. I have been pretty preoccupied with so many different things- people, work and the fundraiser that I haven’t thought about our appointment on Friday. It’s going to be a rough one. We have to have her abstain from milk after 2am, and then she can have juice until 6. Awesome. Then we have to keep her awake so the chloral hydrate will be effective. The whole process is pretty overwhelming in itself. Anyone who has a toddler knows that if anything sets them off, it’s being hungry AND tired.
I remember our first echo after her initial diagnosis at 17 weeks and praying there was some mistake. Maybe the left side would miraculously grow and we can all laugh and thank God this was a terrible mistake. But that isn’t what happened. It took forever for Dr. Levine to find her aortic arch. Her left side hadn’t grown at all. It was all the same and nothing had changed.
Going into this appointment tomorrow I am praying nothing has changed. I am praying there is no tricuspid regurg, any surprises. I pray her ‘squeeze’ remains good and that her function remains good. I have learned by watching others that there are always surprised lurking inside like ticking time bombs we don’t know are there. It’s scary and I didn’t know I was scared until I forced myself to think about it just now.
Please let everything be the same because this is hard enough as it is. Listening to her try to breathe after chasing Addie for a few minutes sucks. Seeing her lips turn purple from having ice cream because she gets cold faster gets old. And after witnessing a fellow heart mom lose her child after he had a transplant reminds me that once again there is no cure for what she has. Not even a transplant will be enough to feel safe. 75% of HLHS children make it to their 5th birthday. I hope to breathe a little easier by then.
Just another moment where I realize that as lucky as we have been, there are no guarantees in the heart land. Each moment is precious. Every giggle, smile and snuggle.

Boston Children's Hospital, Family, HLHS

Day 12 of 30 Days of Gratitude: I am grateful we live 59 minutes away from Boston Children’s Hospital

The day we found out that our baby was going to be born with such a severe defect that surgery was necessary to sustain life was a very painful day. We sat in the doctor’s office listening to the next steps of getting an appointment at the Advanced Fetal Center for an echocardiogram that would determine how severe the defect was while trying to process the information we had been given 30 minutes prior. My husband made the call and we had an appointment for the next day at one of the top pediatric cardiology centers in the world. Not just the US…the world.

We met Dr. Levine on March 6 and began one of many trips to BCH. As we went through the pregnancy we would reassure ourselves that we were at one of the top hospitals and that the outcome would be good. Of course, I would have moments of sheer panic when I would think about what this surgery would mean for all of us. We would be separated from our two daughters. How long would I need to be out on leave for? Would I even be able to keep my job? What if something awful happens? Would I be able to get through if something happened?

The road to BCH became more familiar every time we had to go in. First we had the echocardiograms.Then we met the surgeon who was going to save her life. After another appointment we had a tour of the Cardiac Intensive Care Unit where we were to spend her first week of life. Total number of days we stayed at BCH after the first surgery was 22: 7 days in the CICU and 15 days on the floor. We had many more appointments after she was born, starting in Cardiology clinic, moving to gastroentralogy, and landing in Neurology for the cardio-neurology program. We also traveled for minor emergencies and feeding issues. Every time we were inpatient the nurses and medical staff went above and beyond to make our experience as comfortable as possible.

During the holidays last year we were inpatient. Right before Christmas as a matter of fact. We were given a pass to attend a shopping event that would take place at the hospital for families who couldn’t get out to shop. We didn’t have to pay and there was even a gift wrapping station! We were able to attend the Boston Pops Holiday concert that Keith Lockehart conducted in the Family Entertainment Center. Santa came to visit, and the nurses gave us little christmas trees to decorate if we wanted to.

During rounds I would be told by various attendings that Isabelle looked amazing. One doctor even said to me that the repair done on her heart was ‘perfect’, which is why she is doing so well. I can’t imagine if we didn’t have access to the doctors we have or the surgeons who have made her well-being possible. I know when I read other peoples’ posts about the hospitals their children are in, there are times I thank God we are where we are.

I will never forget one day during Isabelle’s stay in the CICU after her first open-heart surgery, and the hospital clowns came by to visit. She was sleeping in the isolate hooked up to a ventilator, monitors and numerous IVs. They played the most beautiful song to her, and even though I can’t remember what the song was, to this day when I think about that moment I have tears in my eyes. At that moment, they were singing softly, playing the ukelele, as if she were just another baby in a crib. I stood by where her head was stroking her hair. It is a moment I will never forget and there were many other moments like that but none have impacted me the way that one has.

After we were discharged after her second surgery a strange lump appeared on her incision. It became angry, red and full of god-only-knows-what. I took a picture with my phone and sent it to the cardiologist who immediately called me. “You need to head to the ER right now.” I am never crazy about the ER. I feel like it takes forever to get out of there. This time was no exception and I was at a breaking point due to being scheduled to fly out for a conference that weekend and knowing that I had to be at the office in 4 hours. I was a mess. The nurse went out of her way to get us a bed. They listened to me rant and handed me a pillow. It was not one of my finer moments but when I did come back, no one said anything other than it was nice to see me.

Perfect repair. Human touch. Beyond excellent medical care. These are some of the reasons why I chose to participate in Miles to Miracles as our official charity this year. I want to raise as much money as possible for the center that saved our daughter’s life and blessed us with such an amazing little girl. I can’t keep her from getting into things like every other toddler. She constantly disappears on me. I usually find her either in the bathroom trying to get into the tub or doing her usual stairs workout. And she is hardly out of breath. Hardly. Out of. Breath. It’s almost like she has no idea that she only has half of a heart.

I owe this all to Boston Children’s. I am so grateful we had access to the best care possible. Chris is grateful they never incarcerated me when I would have my Mama Bear moments. I knew how incredible the hospital was before when Liz was treated for her infected cyst years ago. Seeing what they have done for Isabelle just renders me speechless.