Interstage Reflections

It’s 6:54 am, I am having my coffee while waiting for the feeding pump to finish giving Isabelle her breakfast. In twenty four hours, Isabelle will be having her second surgery marking the end of the most precarious period of an HLHSer’s life. The title ‘interstage’ is pretty self explanatory, not much to leave to the imagination there if you know that there are three surgeries in total. Her heart has been working twice as hard to efficiently pump blood everywhere it needs to go. The circulation isn’t very stable which is obvious when you check her oxygen sats with the pulse ox. The readings vary from 79 to 86 within 1 minute. Some days her hands are icy to the touch and the area around her eyes has been purple for a few weeks now. It is time for the next step and everyone is more than ready for this period to be over. 

I had no idea how hard interstage was going to be. I don’t know what I was thinking or what my expectations were but I had to throw them out the window and prepare for anything to happen. We went from trying to breastfeed to bottle feeding, then to nasal feeding tubes to a gastric one. We went from being around family members and going to various gatherings to staying home and seeing hardly anyone. We went from seeing a pediatrician every few months to seeing some sort of medical professional once a week. Sometimes it was more than once. We kept a binder full of weights, oxygen sats, intakes and totals. Every sneeze, cough and vomiting episode was worried over and countless phone calls to nurse practitioners. I have her cardiologist’s cell phone number as a favorite on my phone. 

There have also been a few pleasant surprises during these past few months that have become blessings. People come out of the woodwork to support you. When I first started this blog and posting on FB, I wondered how many people would read it. I never expected to get the comments that I have gotten both on this blog and on my FB page. People I haven’t spoken to or seen in over 20 years have posted support, liked my posts or sent me personal messages of encouragement. Some of these people shared elementary school classrooms with me and others are friends of my husband’s that I have never met. Some are people who I graduated college with and others are friends that I have met on this journey of ours. These posts, likes, messages- these have lifted my spirits when I needed it most. My brother and sister, my in-laws and our families have also carried us in ways we never could have asked for. Truly a blessing for me especially since I have become estranged from my father and sister Laurie. I haven’t written about my father or sister, primarily because I don’t really know what to say and I wanted this blog to be about our journey with HLHS; not about my personal pain with my family. It is worth mentioning here about the broken relationships I have with them because it has allowed me to appreciate the support from people more. It upsets me more than I can say that on the eve of our Isabelle’s surgery I have yet to hear from my own father and sister. Not once have they gotten in touch with me to see how she is. I have not spoken to either one of them in months, including when she was born. When I get a message of support from someone in my life, telling me how great I am doing and that they are praying for us, that fills that hole just a little bit more. For that, I thank all of you. 

You start sounding like you went to medical school. Collaterals, O2 sats, intake/output, perfusion, Fontan sequence…many other terms I can’t seem to name right now. Waiting for the doctors to do rounds so you can get a good idea of what the plan is for the day and when discharge may be happening. Looking at the echocardiograms and trying to make out the various pictures but knowing you have no idea what you are looking at. Understanding enough so that when the doctors do come and decide to hold a meeting at the base of your cot while you are still in your pajamas (and bra-less), you can contribute to the conversation without feeling awkward. We have studied about this next surgery and know the difference between the superior vena cava and the pulmonary artery. When the surgeon asked us if we had any questions, we didn’t have very much because of how much discussion there has been about what the next stage will be. The only unknown here is her recovery. That’s it. Blessing. 

You become a germaphobe in spite of yourself. My skin is cracking from the antibacterial gel I bath in every day. Every time I touch elevator buttons, door handles, other peoples’ desks I dump gel on my hands, wince at the sting and rub. I have stayed home from events and support meetings that I desperately need because I don’t want to bring home anything. The one time I went to a meeting last week I ended up being in bed sick for three days. I then proceeded to become the most neurotic I have ever been in my life and worried that Isabelle was going to catch what I had. Thank god she didn’t. If she did, I think I would have gone up to heaven and tried to find Him so I could smack Him. Ok, I am kidding about that but yes, I did think God was totally messing with me by allowing me to get sick the one week it was most important that I didn’t get sick. It all worked out. 

You realize that you are stronger than you ever thought possible. People always say to me “You are amazing, I don’t know how you do it.” I am sure Chris hears the same thing. Here’s the thing- we don’t have a choice. We are her parents. What kind of people would we be if we didn’t rise up to the occasion? If we just gave up and ended the fight before it began? We knew this would be hard, and it has been. On us, on our other two children. It was not easy to hold her arms over her head and listen to her scream during chest x-rays. It’s been hard watching them stick her with needles over and over again trying to find a good spot for an IV. Watching her cry silently because of the breathing tube, tears rolling down her cheeks while we stood helplessly at her bedside. Hearing her gag on the NG tube as it went down her throat. These are all things we wouldn’t wish on anyone but it is our reality and we have dug deep to walk through it. The point is, we made it. On this last day of Interstage, we have made it. She is ready, we got her here and it was truly a group effort. There was no choice in the matter, we had to dig deep and move ahead. We are her parents. It is our job to care and love her no matter what. 

Thank you for all the continuous prayers and we will certainly be posting on her Carepages page in addition to Facebook on her progress tomorrow. Thank you all for helping me get to this moment because I couldn’t have dug deep without you.