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Baby Steps

You know you are getting old when you watch the VMAs and have no idea who half the artists are. And yet, I continued watching until Katy Perry’s Million Dollar Baby finale, which wasn’t worth a million peanuts. I won’t comment on Miley Cyrus. There is too much to say and very little time since I expect Isabelle to wake up any minute.

The VMAs are another marker that summer is coming to an end and soon school will start. Plymouth starts next week and Addie will be starting preschool the week after that. I am looking forward to when she starts for a number of reasons- biggest being that maybe they can figure out how to get her to listen and that others will see how incredible bright she is. Oh, and maybe someone could recommend a speech therapist since half the time none of us has any idea of what she is saying. And I will have a few hours in the morning with just one baby three days a week.

Isabelle is now on the move. Her curiosity propels her to various hot spots in the house, such as the changing table where all of her medical supplies are and the area under the desk where all the electrical sockets are. I am thrilled that she is showing us that she is learning fast but it can be a challenge when her sister has a toy she is interested in but does NOT want to share. Good times. 

We have a cardiology appointment tomorrow and I am hoping for another 3 months of no appointments. I hope her function has remained good and that she continues on doing well. Her legs still are not strong enough to help her stand from a seated position, and walking seems to be a little ways off but we are happy with how she is. She is chatting up a storm and has started to point at things of interest. 

It’s funny how people make assumptions before they know of her condition or what she has been through. I can see the wheels turning when I say that she hasn’t taken steps yet or isn’t saying words. I think the first assumption is whether I have noticed that she is a tad behind, and if she is, then there must be something wrong. Not that they would ask, of course. Instead there is an awkward silence while I watch her play at my feet or in my arms. I don’t hand out pamphlets when I meet new people about what she has gone through. I just smile and say I think she is doing great, because I do!

In other news- still no job yet. I know it’s the summer and as the fall schedule approaches I am wondering how I could work in Boston and still get the girls to where they need to be. I am hoping to find something a lot closer to home, and the trade off is that may not be in the design field. I have no idea what I am going to do or even what I want to do. So maybe it is a good thing that it has been quiet. Who knows. In the meantime I will continue on looking in spite of my doubts and see what my options are. 

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Hardboiled

Yesterday started out great. My mom and I went to the driving range and I hit some incredible shots thanks to her great tips. Drives that made my jaw drop. I think I finally saw the golf swing my grandparents saw years ago. It was awesome. I then spent the afternoon looking for a job, thinking about different career choices while watching “Kill Bill Vol 1.” 

The afternoon came and went, Chris came home and we both collected our girls at our neighbors. My dinner was going to be panfried chicken breast dipped in egg and parmesan with salad. Hmmm. Eggs. Would Addie like scrambled eggs for supper? Sure! Why not make enough for both girls? After all, Izzie has had eggies before so this should be ok. 

Made the eggs. Izzie was happy and eating them. Addie was not really eating but doing everything else from coloring to showing me things around the kitchen. Chris was on the phone with Best Buy who gets amnesia every time when it comes to our microwave. Izzie seems really tired so we put her in the playpen to sleep. Maybe she is down for the night. After about a half hour, she wakes up restless. Addie has been in the tub for about the same amount of time (so it seems). Maybe Izzie should have one too. Bring her in to the bathroom and that is when I saw the Hives. Huge hives. And they were spreading all over her back, her arms, chest and stomach. They were appearing as fast as I was looking around her onesie. If we were in a movie, the camera would have done a 360 degree pan around us.

Quickly I take her to the changing table so I can get a better view of what was happening. Cue to Chris- allergic reaction! Who do we call? Pediatrician’s office! We what? Give her Benedryl, go to the ER. We give her Benedryl, she throws up. Not good. Addie can’t decide which nightgown she wants to wear. Call my parents. Please meet us, we have to bring them both to the ER. Addie needs to get into her PJs. She is literally going in circles. I realize that I can either lose my head, or get the Ariel nightgown that makes her feel  like a princess. All is well. We are in the car. 

I find out later that the best course of action would have been to call 911. We pulled in and I jumped out, grabbed Izzie and lost my mother on the way in to the ER. She thought Addie was getting out too. Thankfully she had told them we were coming. We got right in. 

She was itching herself all over- her head, ears, and chest. Her color went from blotchy to RED. Flaming red. As soon as she saw medical personnel, she lost it. Heart rate up, O2 sats low. Unbeknownst to us, the nurses and doctor were really concerned because the reaction was getting more severe by the minute. IV went in after a few tries and so came the benedryl. The consensus was that we would be better off where they knew her best so off we went to Children’s. 

She was much better when we got up this morning, but I was exhausted. Now we have to worry about food allergies? Really? So half a heart isn’t enough apparently. Allergist appointment in a few weeks – not soon enough for me, by the way, and no epipen. We have an appointment with our pediatrician and I will make sure we don’t leave that office without a prescription. 

Once again I am grateful we didn’t have a different outcome. And, best part- I got to meet an extraordinary warrior named Sawyer. For the past year I had read his mom’s posts on the various pages I am on. Inspiring posts of heart mama love. It was awesome to finally have met them in person. Best part of the day, with the exception of being home with all three of my girls.

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One Day at a Time

A year ago a fellow heart mom came to visit me after I had given birth to Isabelle. She brought her young son who also has HLHS and her dad. She knew that I was sober and that my anniversary was in August and that I wouldn’t be able to celebrate or get a new medallion because of what was going on. Her father had been sober many years and knew that I needed some contact and put his hand out. He gave me his 12 year medallion and a framed serenity prayer for me to look at while sitting at Isabelle’s bedside in the CICU. For those of you who don’t know anything about 12 step programs, that is an excellent example of how one drunk helps another without even knowing that other person. All he knew about me is that our child had the same disease as his grandson, and that I was an alcoholic who wouldn’t be able to get to meetings for a while. That’s all he needed to know and there he was, medallion in hand.

12 Step programs aren’t about sitting around a room in a circle, whining with a cup of coffee in your hand while reciting slogans. It’s about changing from being a selfish person to one that cares about other people and in the end, benefiting from that goodness ten-fold. I feel fortunate to be part of something that has helped so many people. I have a sense of purpose in addition to my daily responsibilities. That purpose helps me when I am not able to stay connected or are in positions where there is a lot of alcohol around. I don’t miss it. 

The phrase ‘One Day at a Time’ used to be on my car when I was a senior in college. It reminded me of who and what I was in spite of being surrounded by drunk college students. It helped me get through many days of cravings, wanting to be like everyone else and to stay on track. I thought I understood what it meant. Isabelle taught me how wrong I was. 

When we found out that she had HLHS and were told that she was safe in utero, I slowed down and relished every pregnant minute. She wasn’t born yet. At that moment she was safe. I could breathe and be with her. After she was born and we handed her over to Dr. Emani for her first open heart surgery that would involve a shunt and reconstruction of an aortic arch, I spent the whole night before touching her face and held her as much as I could. I may not be able to be with her during surgery, or control the outcome, but I could certainly be with her for that moment, those hours before that surgery. 

When we were going through the Interstage period and couldn’t be with family because of illness, I reminded myself that I’d rather have her for future holidays with us, instead of taking the risk. For the moment, she was safe and we got through each holiday together. When I would see other families lose their children, or not be able to hold them because of being intubated, I would hold her close. Every minute was special. It still is.

One of my favorite moments in Disney this past week was when we were walking back to the buses to head back to the resort after the Electric Parade. The fireworks show was going on over Cinderella’s castle and Jiminy Cricket was crooning “When you wish upon a star…” I turned around to see the fireworks as he was singing and thought of what I would wish- and immediately teared up thinking of all my heart mom friends. We would all wish for the same thing- to have our children whole. To have them be with us forever. To not need any more surgeries, or blood draws, IVs or X-rays. I thought of all the moms waiting for their childrens’ Fontans and of moms whose children became angels this year. And then I thought about my wish to have Isabelle with us forever, to have a whole heart. I looked down at her and she was looking at me with her big blue eyes and little smile. Her wish would be to be with us, and all we have is this moment right now. One day at a time. 

 

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A First Birthday of Many

ImageTonight we are celebrating Isabelle’s first birthday. All day I have been in awe that she has been with us for 365 days. Two open heart surgeries, two G tube surgeries, one cath and countless echoes/X-rays/labs later, here we are with one more surgery to go. Amazing. Miraculous. 

We are so fortunate. There are far too many babies who did not make this milestone. Angels that were heart sisters and brothers to Izzie. Parents that will never get the chance to bring them a cake with a candle to blow out. Anya, Rowan, Gabe, Hayden, Seren, Lily Grace…the list is too long with one name never mind six names. I read their stories, agonized through updates and prayed in spite of my own dysfunctional relationship with God for them. I shed tears for them and for their parents. 

I cannot imagine what losing a child feels like. I have born witness to others losing their children, one in person. I have seen mothers wait outside in the lobby with frantic eyes and holding their hearts while their child is coding. I have hugged a mom who burst through the doors of the CICU unable to catch her breath. 

Yes, it is amazing that we have been so fortunate with Isabelle. I am so utterly grateful that we have been blessed. When I hug her and kiss her cheeks I think of the moms and dads who no longer can or who are waiting at bedside in the CICU not able to hold their child. When I hear her giggle and clap her hands I think of the children who are frightened waiting for surgery. I think how fortunate we are and how hard I am going to pray for them. 

Tonight we blow the candles out for the ones who didn’t get the chance. Happy Birthday, Isabelle Faith. Oh how you are loved!