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Day Three of Awe

The days between Rosh Hashanah and Yom Kippur are called “The Days of Awe’. This is when one is supposed to reflect on the past year and prepare to make amends on the Day of Atonement along with the entire Jewish community. I was told that Yom Kippur is considered a joyous holiday, because it reminds you that in spite of the wrongs you have done, you are not alone in committing wrongs. It takes courage to stand in front of God and freeing to know that you are not alone. 

I learned about the freedom of no longer feeling alone and isolated when I walked into my first AA meeting almost 20 years ago. It is something I have never forgotten and consider it one of my first blessings of my new existence. I sat at the table with a weak cup of coffee and listened to people talk about what they went through when they succumbed to alcohol. Anyone else would consider the stories humiliating. I couldn’t believe people were talking about the same feelings I had, did the same stupid antics I did and for the first time in my life I felt like I was right where I needed to be. 

The same desire to reach out and seek similar experiences was what drove me to find other heart parents who were walking through similar challenges to us. I knew that by connecting with others who shared this experience, I would get the support I needed to get through the pregnancy, delivery and her journey towards life. I know I have written a lot of what HLHS has taken from me, but there are some unexpected gifts I have been blessed with along the way.

I have met some incredible moms thanks to Isabelle’s defect. Moms who could tell me what to expect before and after surgery. Who could give me advice on how NOT to strangle the nurse. Moms who could console me when I couldn’t nurse the way I wanted to. Moms who came to visit me, who took the time to take pictures of my beautiful girl while their son was also in the CICU, moms who went out of their way to meet me and show me their beautiful children. I also met some great Dads too. 

I have also seen many families in turmoil, and have seen their babies become angels. Babies who I have gotten to know through these connections and feel pain for their parents whom I have never met. I have also seen children get through their hard times, and fight to go home. These situations have forced me to be completely in the moment with Isabelle. Not just give the One Day at a Time lip service bullshit, I mean really be in the moment, breathing her in, loving her. She is with me right NOW. She is with us right NOW. Right NOW I have three beautiful daughters with me. When I hold her, I close my eyes and I can almost feel time stop. Feedings are not such a make or break situation, and I have given myself permission to freak out only if it continues for more than 24 hours. 

This brings me back to the Days of Awe. This is also the time where our names are inscribed in the Book of Judgement. Who shall live, and who shall die. As I see more and more people lose their children, I feel like I am clinging to Isabelle wondering which Book our names will appear in. The sheer randomness is terrifying. I have to pray that the pen makes the choice I want. Again, being forced into the corner of prayer because frankly, I have nothing else. Each day brings another Angel and I cling to her. Who shall live and who shall die. 

When I see that another baby has lost their fight, I wonder what makes them different from my own. Some situtations are drastically different and the odds weren’t that great to begin with. Others, not much. I know what a miracle Isabelle is. Today she had a cardiologist appointment. Another great appointment telling us how amazing she is. Her weight gain is slow, but we are discontinuing the Captopril so hopefully that will help her appetite a little. Maybe increase the lasix by a half dose too. Either way, the cardiologist was extremely pleased and that brings me some peace. I wish other families were blessed with that peace. 

 

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Happy New Year

Tonight marks the beginning of the High Holy days starting with Rosh Hashanah, the Jewish New Year. Whereas most people reflect on the past year closer to December 31st, my reflections happen closer to October. To say this was a monumental year is an understatement. I have never had such a tumultuous year since my first year on this earth. The events changed my world three-fold: mentally, physically and spiritually. I have grown in my career and have enjoyed success at my work this past year. My running reached a new level and I had the pleasure of becoming part of an amazing group of runners who I looked forward to running with every Sunday. In December we found out we were expecting a third addition to our family and made the decision to start looking for our own home. 

All of these changes are minute compared to the enormous change that occurred on March 5th. With one sentence our world went from one extreme to the other, and I was faced with my biggest spiritual crisis. I was furious at God for months, even after she was born I had a hard time considering prayer. It wasn’t until I let her go into the arms of the medical professionals that I didn’t have a choice. Still not on the best of terms, but it is a little easier to pray these days than it was 2 months ago. I learned something really big this year and because of this crisis of faith, I have grown spiritually in a way that was completely unexpected. I mean, how can you grow spiritually without praying? By relying on the prayers other people were sending us, by handing her over to the unknown, by being brought to a place of where I had nothing else to rely on. Amazing. 

Physically, I went from one size to another and am looking forward to the pendulum swinging back to my former size. I was given the all clear to start exercising. My heart is looking forward to working hard and hitting the pavement. I’m a hell of a lot more tired than I was last year no doubt, but I plan on starting my road back to sanity as soon as possible. 

So much change in 365 days, and so much growth. The gifts we have received in exchange for a sick child are priceless. Yesterday was challenging because I have been feeling really isolated and sorry for myself. I’m days away from turning 40 and my wish for a celebration doesnt exactly coincide with Isabelle’s condition. I just want to celebrate something since I feel like I have been in mourning for months. Sometimes it just gets me down that I can’t do the things I want to do or did with my previous children but the next thought is what a miracle Isabelle is and I will do whatever it takes to keep her with me. She defies odds by being alive. She is a living, breathing miracle. She survived an invasive open heart surgery. Her aortic arch was recreated using Gor-Tex. They make bathing suits out of that. 

I find it interesting that God feels it necessary to back a person into a corner in order for them to turn a corner, to turn towards Him. Perhaps it is because walking through tremendous pain and surviving makes for a stronger bond, rather than having everything go according to the person’s plan. It’s easier to pray when things go right, but when things go the opposite way, it is next to impossible. Who knows. 

I won’t be in synagogue for the first time in years for Rosh Hashanah. It bothers me, but I know this is one more “Next year” type of situation to add to the growing list. I’d rather be home with Isabelle and know that the only germs she is exposed to are mine. 

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Feeding Frenzy

When I first started doing my research about HLHS and all of the complications that came with it, never in my wildest dreams did I expect for us to be home after just three weeks in the hospital. If anything, it made me even more anxious because I have read stories of people who were home before they were ready only to have tragic results. I hold Isabelle every chance I get, and know how fortunate we are in our circumstances. I also knew about the many trials and tribulations other parents had with feeding. Again, did not expect what we are currently dealing with or my reaction to it.
I feel like no one gets it, how important this is and how frustrating it is to do everything you are told only to have her lose another 10 grams. There are no words to describe this feeling of utter powerlessness over her weight and I am beyond overwhelmed at this point. We are adding in the extra calories, undressing her, tapping the bottle to keep her swallowing, feeding her when she is hungry, feeding her when she isn’t, the list goes on and on. The whole situation is making me crazy and I am getting more isolated in my misery every day.
This panic, in my opinion, is justified. I want her to be strong enough for her next hurdle and that isn’t going to happen if she doesn’t gain consistently. The next hurdle is going to provide some circulatory stability and hopefully allow us to be around people. So far we have had to miss a family barbecue and back to school shopping trips.
I was able to go for a nice long walk yesterday, but I wish the positive effect of the exercise stayed with me for longer than an hour.
I just wish I could figure this out, this feeding dilemma. I wish I could have some effect on her health other than shoving medicines down her throat and tricking her into taking them. I have never felt so powerless in my life over the well being of my children. I know people mean well when they tell me that this is a test and God doesnt give us more than we can handle. I’m sick of being tested, but smile anyway in spite of my overwhelming desire to smack them.
I don’t know what else to do, and I feel like I can’t leave my house, or do anything that helps. All I do is pump, fill bottles, watch her only eat half, and write down all of our stats so we can prove to Children’s that we are following directions. We have two appointments at Childrens tomorrow- one with the cardiologist, and the other with the nutritionist. I don’t even want to know what they have to say right now. I am so frustrated with everything.
To make matters more interesting, Adeline is constantly trying to get our attention. So on top of the feeding issues, we have a toddler who doesn’t understand that bouncing on the couch around us while we hold the baby isn’t a good idea.
I need to get out of the house before someone commits me. My mother keeps asking me what she can do to help. I don’t even know where to begin. I just feel more hopeless about this every day and there is nothing I can do about it.