Crash Diet

Interstage sucks. This time period between the first and second surgery is considered the most difficult part of the HLHS journey. Today we had an appointment with the GI specialist with very little bedside manner. Today was one of the most stressful days I have had in a while. It was the first time I had not been able to meet a deadline at work. I left my house later than I wanted to and was late getting to the hospital after being in a lot of traffic. I didn’t have a chance to get my amazing husband anything for his birthday, no cake, card, no gift. So Chris and I have spent both of our birthdays at Children’s hospital. 

At home, our days are defined by feeds. Before feeds, during and after feeds, which is when we assess the situation and plan for the next feed. We write down every cc she takes in, if she throws up, what her sats are. Her weight. We do this everyday. The binder has become an integral tool to bring to the hospital with us and allows us to answer the many questions the doctors have about her weights, sats, and how much does she take a day. Today we were shown via  a growth chart how much our hard work has paid off. But it isn’t enough. It’s not enough that I have sacrificed breastfeeding for the greater good of calories gained. It’s not enough that we isolate ourselves and Isabelle, keeping her from family and friends. It’s not enough that we miss Elizabeth’s events at the school, or Adeline’s needs for attention. It’s not enough to worry about color changes, oxygen levels, and the signs that the next surgery is coming. 

Nope. Now I have to give up all of the foods I eat in order to provide her with a hypoallergenic milk. I can’t have milk, ice cream, cake, (well, I couldn’t anyway being on Weight Watchers and all), eggs, or cream in my coffee. I can’t have anything made with eggs. Which means no potato latkes for Hanukkah coming up. Pity party? Yes. Yes it is.

I was on Facebook tonight and am jealous of the normalcy I see everyone else having. I would love to have a debate over what lights to use on my house and tree instead of trying to figure out how to celebrate the holidays from my house without any of the foods I enjoy. I would love to be able to go out for a run and not think about how she may never be able to. I would love to have some of the problems I see people have on here. Please! Give me a small problem instead of worrying whether she is still with us in the morning or not. Yes, I do look in her crib every morning and place my hand on her to make sure she is warm.

This life is hard, and I would love for nothing more than to forget about it for 5 minutes. I am weary of all of this change that I am being tasked with. I tried to have some normalcy last weekend when some friends were in town. We didn’t meet up, because it’s awkward to be with someone who doesn’t drink and who has a lot going on like a sick child. Actually, I really can’t say that. I don’t know why it didn’t happen- I can only assume. But even though I understand that my life can be a downer for some people, I really wanted to see them because they represent who I used to be and a time in my life before I became a complete lunatic. I needed to see them and perhaps that wasn’t what they needed. It hurt, but I can honestly say they have been some of my biggest supporters online and I am eternally grateful. It’s funny. Last friday night I felt like I was 10 again not invited to the sleepover. I digress. I am way overtired and probably should have my editor come and look at this. 

These sacrifices- food, friends, holidays- it is taking a toll. The cost is high and I found myself wondering if I could continue to afford it. How much more do I have to do? I love her so much but it’s just really hard right now. February can’t come soon enough.


Pedal to the Metal

After a ten-plus month hiatus from the gym, I took a spin class today. Yesterday I took a muscle class, which is basically weight training but more tortuous. It felt great getting back into my gym clothes (the fat ones) until I saw my reflection in the mirror showcasing the rolls of fat I have accumulated through pregnancy. Disgusted, I made a commitment to jump back in regardless of how ridiculous I look. And with this attitude, I took a spin class today, ignoring my sore muscles from the day before.

Unlike previous attempts, this one is to be my last “must lose 60+ lbs.” At least, I hope it will be. I know people have said to me “But you’ve just had a baby!” or “You have so much going on, why worry about that?” I worry about it because it is me who has to look into the mirror everyday. I worry about it because I want to feel better. I need to get back to the shape I was in. I need to run the races I used to run. For me. For my sanity and frankly, for this waistline. 

Something happened in spin class today and I haven’t stopped thinking about it since 1:00 this afternoon. I know I have been under a lot of stress, and that mostly my posts have been about my fears and frustrations. I thought I was getting it out when I would write. I didn’t realize how wrong I was until this afternoon.

As I was pedaling to some Kiss 108 music, the instructor demanded that I torture myself some more and turn the knob to add more resistance. “ADD!” She yelled from her bike perched at the front of the room. “You get out what you out into it…you’re all lying to me, you’re not at a 7, you’re at a 5…ADD!…Reach down and ADD AGAIN!” Sweat pouring off of me, I clumsily stood up with the rest of the slaves and tried to keep up. 

Then it was time for sprints. I had to pedal as fast as humanly possible whenever she yelled “GO!” which felt like every 2 seconds. My legs burned, I couldn’t use my abs cause frankly, I can’t feel them yet. I closed my eyes and pedaled as fast as I could. I could hear her shouting encouragement to whomever was conscious and kept my eyes closed trying to take in oxygen. I tried to breathe deep and not fall off the bike. I thought about my heart that was beating so hard in a desperate attempt to keep up with the demand for oxygen. Then it happened.

 The tears came. I thought about Isabelle’s heart, and how she may never tolerate the exertion of pushing herself to her limits. I thought about what she has been through and how much I cannot wait for February to get here. I don’t care about the holidays, and I am tired of pretending that it’s ok that we have to stay home away from everyone.  I want to just get through the next few weeks so we can feel more secure about her being with us. I thought about how hard I was pushing myself, how hard my life has been over the past 10 months since I sat in that class and I pedaled harder. I thought about how much I hate congenital heart disease, how much it has taken from me and how much more fighting we have to do. I thought about all of the children who we have gotten to know and who lost their fight. I thought about the other moms I know who were robbed of their children because of a fluke. The tears mixed in with the sweat pouring off my forehead and I opened my eyes when the song ended. Breathing hard and gripping the handlebars, I focused on my breathing. What was that? Crying in spin class? Did anyone see? Is my red face a good camouflage to what was happening?

I wiped my face and slowly attempted to climb off the bike. I wiped it down, picked up my towel and staggered out of the studio. Peace. I felt peace for a while and was happy that I was able to reach that point of catharsis. It reminds me of the long form of the serenity prayer, where it says “Accepting hardship as the pathway to peace.” Pain is the touchstone of spiritual matters. That connection has been missing and I am so grateful I was able to have it for a moment today. 



Finding Gratitude in Spite of Myself

I have never been a positive person by nature. Those of you who know me are very familiar with this and take my rantings with a grain of salt (I hope!). My life hasn’t exactly been conducive to being a Pollyanna. It has been a constant struggle for me- whether it is my non-existent relationship with my father and sister, dealing with the joys of ADD, addiction issues…the list could go on and on. I remember when I was fifteen and a counselor tried to teach me to focus on positive aspects of my life. Total waste of time because at that point in my life, I was just not there yet.

Fast forward a few years to my first year of sobriety in 1993. After a lovely phone call complaining to my sponsor about how much my life sucked, she told me to write a gratitude list, call her back and she hung up on me. When I got over the initial sting of someone not putting up with my crap, I sat down at my wobbly kitchen table in my little apartment. I had nothing to lose. Taking some paper, I wrote the date at the top and stared at the blank paper. What was I grateful for? I looked around the apartment. Well, I’m grateful I have food in the fridge. I’m grateful I have clean clothes. I’m grateful for my coffeemaker. Eventually I made it to I’m grateful I am sober and not in pain. I’m grateful people aren’t avoiding me. I’m grateful I don’t feel sick. I’m grateful for my family, for my friends who have stood by me. When I put the pen down I felt much better and called her back. Did I tell her she was right? Of course not! I didn’t tell her that until 15 years later.

This month of November I have seen people post their gratitude lists daily as their status. When I realized that is what it was, the month was already half over so I have enjoyed reading others and thinking about my own. This is when I get a minute to think to myself, which doesn’t happen until 11:30 at night much to the chagrin of my husband who is waiting for me upstairs.

Isabelle had her bi-monthly cardiology clinic appointment yesterday. She is doing amazingly well besides the weight/growth issue. We are on track for the Glenn in February and her cath will be in early January. To say I am grateful for a non-eventful appointment is an understatement. We had our appointment, and got to go home. Right now, I know a family who will be spending Thanksgiving at Children’s. I know another family who is waiting for a new heart for their son and spending the holiday at his side in the hospital. I know others who would give anything to have one more minute with their son or daughter.

When I think of them, I hold Isabelle close to me and feel her heart beating against my chest. I breathe her in, close my eyes and thank God for the moment I have her in my arms. With my eyes closed I take in how she feels against me, the warmth of her little hands, her face. The sound of her breathing. The faint smell of Johnson’s Baby Shampoo and the softness of her hair on my cheek. I want my arms to remember how she feels against them. I want to be able to take in every second of all that she is.

I have done this with both my other girls, Elizabeth being the first. I remember when we lived in Vermont looking out of the window in our apartment at the snow and just holding her. I hoped that she could feel my love emanating through my body. Because she was my first child, I had no idea I could love a little person like this and wanted to remember everything. With Adeline, I rocked her and gazed into her sleeping face. I would hold her close after she nursed for as long as I could, knowing that she would not be like this for long.

As I would hold them, I whispered my gratitude to God for blessing me with them. With Isabelle, it has been a little different. When I found out that she had HLHS it was impossible for me to be grateful to God for anything. I would see posts of other people who were expecting around the same time and was jealous that I couldn’t enjoy my last pregnancy the way I wanted to. It wasn’t until she surprised everyone with her amazing recovery that I was able to be open-minded about God again. I was able to be grateful for the first time in months.

Today, my gratitude continues to grow as I turn my focus on what we do have instead of what we don’t. Our miracle is still with us, our other daughters are in good health and we have our own home to celebrate the holidays in. I have a great network of other heart moms who have given me support when I need it most, and a workplace that respects me. Do I have my days when I can’t read someone’s brag post about their baby?Sure I do. It does pass and eventually I do read them. I just can’t comment yet.


Preparing for a Different Holiday

Today was supposed to be a busy day for me. Plymouth’s Thanksgiving Parade in the morning, a niece’s birthday party in the afternoon and Liz’s play at night. Isabelle and I had other plans that involved some feedings, some reflux action, and pie crusts. She was full of smiles in between her retching and I held her for most of the day enjoying the snuggles. She is a happy baby in spite of herself. I love watching her look at new toys and see her process the idea of reaching for them. 

These moments remind me why I have to be so careful. These small precious moments that have become daily treasures remind me that right now we have to be away from family, friends and crowds. As lonely as it was being away from not be able to do what we originally planned, my hope is we can enjoy many more after her Glenn. 

I did get to see Liz on tv playing the flute, so it wasn’t a complete wash.


Dancing in a Mine Field

Some days I find myself walking through the day with blinders on, just trying to focus on the task at hand and nothing else.  When people ask me how Isabelle is doing I never know what is going to come out of my mouth. Of course, I find that to be true of many conversation topics lately but in this area I am particularly unpredictable. Sometimes I say “She’s doing good!” with a smile and move onto the next conversation. Other days, like yesterday morning for example, I say “She’s ok, wish she would gain some weight and stop pulling out the NG tube. We spent last night at the ER for a second weekend in a row and I am at my wits end.” The elevator doors can’t close fast enough.

Yes, this is hard. Our lives with CHD is hard, and it isn’t going to get easier for a long time. I compare our life right now to walking through a minefield. On the outside everything looks natural. You can’t tell where the mines are and by all appearances, the field looks innocent. But you know looks are deceiving. Underneath the grass lurks a danger that you can’t predict and there isn’t a map to show you where to step. You have to go on what appears to be the right path until you step the wrong way and all hell breaks loose. All around you bombs are going off and you can see your fellow heart families losing the battle, mothers struggling with where they went wrong on their journeys. Some days I feel shell-shocked from all of the loss I see on these pages. Other days I can see the ones who have made it across the field and I retrace their steps the best I can. I know it’s possible to get there but it seems so far away right now. It’s hard to imagine myself being there because when I do I immediately have to change my thought for fear that I am jinxing our outcome.

As each day passes and she smiles more, reaches for her toys, and becomes more a part of our family, I get more afraid. I can’t breathe, my throat hurts and tears simultaneously come to my eyes.  My mind goes to the What If place. I am grateful I don’t stay there very long. I take a deep breathe and push myself to step forward. The compass we have been given doesn’t exactly point to north, but we have faith that we are moving in the right direction.

Our latest trip to the ER became a new fight. After 2 hours of not seeing a soul other than people looking in watching us try to soothe her crying, found myself at the nurses station asking if anyone, ANYONE knew how to drop the tube on our baby. I don’t have any patience when I am in the minefield. After posing the question, the answer I received was “Only physicians can put an NG in.” Ok, where is the physician? “Someone will be right with you.” I am out of time, she has cried long enough. They look at me like I am crazy. I don’t care. Get someone in. Now.

The doctor who comes isn’t wearing a mask and we find out after he has already taken out his stethoscope that he has a cold. I’m speechless as he tells me the last time he dropped a tube is when he was a resident. He decided to call the neonatalogist. The calvary in the form of the nurses from the Birth unit came and in less than a minute, dropped the tube in and had it secured. The battle has been won, but we are exhausted and head home after the chest x-ray.

The fight goes on and we keep fighting for her. Chris is the level-head that keeps me from getting thrown out of these places but he is battle weary too. The truth is if I didn’t storm out to the desk, if I didn’t come out swinging, we may still be waiting for someone to see us. I run the risk of looking a lunatic, but this lunatic wants her daughter to stay alive. I don’t care if it costs me my dignity or is embarrassing. I’d rather be embarrassed than at her funeral. People think I am a tad crazy about germs, too bad. It’s either that or the alternative. Walk through this minefield with us, see the casualties that we see and then come back and tell me I am crazy.

I love my Isabelle. I love my girls and I’d be crazy if I didn’t fight for them.


My dillemna

What a crazy weekend. Our lives are pretty hectic as it is between band, family obligations and chasing Addie around. Add in a severe heart defect and you have yourself a real party!

I have learned a few things this weekend. 1. Probably should cut down on outings with Isabelle. It’s a lot of stress and worry about what people have or have been exposed to, and other things that out of respect I don’t want to get into. It was hard, this past weekend and I am very happy it is sunday night.

2. Yes South Shore has a great Pediatric ER,but  not so great with cardiac patients. We were there for too long for something that should have been simple turned into a night from hell.

3. Use the visiting nurse for NG tube replacement. Isabelle only cries for a little while and she gets it in perfectly with little fuss.

I experienced crying the other day that shook me to my core. I was terrified that she was going to literally bust a seam. Yes, babies cry. I get it. Problem is when she cries, it burns many of the calories we struggle to get into her daily. Just this past week, two more heart parents lost their children. This is a serious condition, any little thing can cause a ripple effect that can make what appears to be a small deal into a very big one. As I frantically tried to keep calm while she turned purple, all I could think was ‘Please stop, please stop!” and then I told myself that we are locking ourselves up until Interstage is over. She did eventually stop and even gained 30 grams today which still blows my mind.

This life can be hard. It’s isolating. People think you’ve become a crazy germaphobe. You worry. And when you see other moms struggle you thank God it isnt your turn at the moment.

My dillemna was whether or not to post this because the reason why we were there in the first place was a total accident. I dont want anyone to feel bad and it isn’t the reason why I am writing this.

I just needed to get this out. It was one of the scariest moments I have had in this existence and I am so grateful she is here with me, snuggling.