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A FewWords Regarding my Other Half

There is no question that my husband has kept me out of jail and a psychiatric hospital these past few months. He has put me before himself many times through hospital stays, doctors appointments and feeding schedules. I don’t know many men who would volunteer to take turns on who is staying at the hospital with her like her has. Or who would do the laundry, make sure no one is going to starve and that there is enough gas in the car for us to get to and from Boston more than once a day.
He deserves a huge shout out for getting me out the door to do things that are mentally healthy for me like running. When I am out its three against one. It’s not easy running after Addie these days. She tends to completely NOT listen to anyone and melts down if her planets are not aligned. She’s two going on three. Of course she is like that. My point is I don’t know too many men who could handle a two year old, a sixteen year old and the household stuff without batting an eyelash.
My father ran away from his kids, my stepfather would starve without my mother.
Chris has stood by me, given me the ‘calm down’ hand gestures to keep me from getting thrown off the floor, held my hand when we were seeing Isabelle for the first time after surgery and humors the rabbi every time she would visit. He would make the sacrifice of sleep so I could have some, stop at Whole Food when I would run out of my foods, and make every effort to make this easier for me and our family.
People tell me how strong I am all of the time. He gives me half the strength I have. I could not have kept it ‘together’ without him. Next week, he will take on being the sole parent again while I am at a conference and hasn’t batted an eyelash. Not once has he complained about it. He is just worries that I may not make my 6 am flight if anything.
I am so fortunate to have a true partner by my side and I love him.

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Open Letter

Dear Isabelle,

As you lay on the operating table, I hope you feel our love surrounding you. So many people are praying for you today and are with us. While most other babies your age have reached milestones like sitting up, rolling over and attempts at crawling, you have reached a milestone of your own- the end of Interstage and beginning of the next level of your repair. While you fight back from bypass, I want you to know a little about whom you are named for.

My grandfather’s name was Israel. Everyone called him ‘Harry’, I called him Gramps. He was a quiet man who loved his family and his profession; dentistry. I loved him dearly, he meant the world to me. He taught me a great deal about life and our family’s heritage. I never got tired of listening to his stories of what it was like when he was a little boy, his life after he lost his father at 13, and his life at Bates. I especially enjoyed hearing his stories about my grandmother Adeline, whom your sister is named for. He called her his bride, and when I would visit them in the afternoons, the two of them would be found in the den holding hands. 

Gramps was a quarterback and played football for Bates. Out of everything he had accomplished in his life, I think that was one of his favorites. The odds were against him being successful. He was small, almost tiny in comparison to other football players on his team. He was scrappy and fought his way to becoming an integral part of the team.

He had sparkling blue eyes that would twinkle when he was happy. He could fix anything. He had an incredible golf swing. Couldn’t hold a tune but could grill a steak like no other. He was a constant source of love and comfort for me throughout my life until he passed away in 2009.

When we found out you were coming and that the odds were against you, I was at a loss for a name. We chose Isabelle at first because of the family tradition to name after a loved one at first. As it became more apparent that you were a fighter, pushing up against the technician trying to get an echo, I knew there wasn’t any other name we could give you.

Israel, in hebrew, is translated to mean ‘wrestled with God’. I know you are having your own wrestling match right now. I know you will come out on top. 

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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. 

 

 

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Pre Op

Tomorrow we are heading in for Isabelle’s pre-op. This one is for her cath which will take place on thursday. The one for the Stage 2 surgery is Friday. After months of washing hands, staying away from gatherings and trying to keep ourselves germ free, I found myself sick with a nasty cough the past few days. Every time she sneezed I panicked. Every time she coughed my heart stopped. No one knows what this is like- feeling like you could have unleashed a potentially fatal virus onto your baby’s fragile system.

I am breathing easier tonight for a variety of reasons. One is that the antibiotic appears to be working and I am feeling much better. Another is that tomorrow marks the beginning of the end of the Interstage Hell we have been living in for the past 5 months. Days of weighing, monitoring oxygen levels, visiting nurses and weekly phone calls checking in are soon to be over. Things may finally get….normal. 

I have heard of this elusive land of normalcy post-Glenn surgery. Part of me is scared because I am used to the scales, pulse ox machines and constant tracking. It is familiar. After this next step we have a long while to wait. A whole year before we are back preparing for another pre-op. 

So far, she has not picked up the horrific virus I had this past weekend. I am truly grateful that God has found some mercy in that. Still pissed at Him, wish he would stop messing with me but that is a conversation for another day. I just want us to make it to the next step. We have struggled and sacrificed a lot to get here. Isabelle has fought hard to get here. Fought the endless burning of calories that prevented her to grow, fought against the NG tubes, the various  ER visits and surprise inpatients. 

As of tomorrow, we made it. We made it to the cath, we will find out her heart function, pressures and whether she grew some collaterals in the process of putting that delicious chubby face on. I am looking forward to the beginning of the end, as much as I hate change, this will be good.