a break…

by rusti on October 10, 2013 · 0 comments

in Uncategorized

we’d like one, but it seems we just can’t catch one right now…

since Christmas we’ve been planning a family vacation to Florida – my parents cashed in a few unused weeks with their timeshare and got a couple of condos for themselves, our family and my sister’s family for one week and we’re so pumped to go to Disney and Goose has been talking about meeting the princesses for the last ten months…

for the last couple of months we’ve been house hunting without much success… in just a couple of weeks we looked at seventeen houses. two of them twice. and although I was originally resistant due to location, we made an offer on a house Hubs loved. and it was accepted. and it passed inspection. so on to the appraisal.

in the meantime, we received a notice from our homeowners insurance that our policy was set up for non-renewal unless we replaced the roof. (we knew it was going to need to be replaced in the next year or two, but the timing on it couldn’t have been much worse.) so we bought all the materials to do it ourselves, in an attempt to save on costs. Hubs was able to get help from some work buddies and get the garage done, but it was between shifts, the pitch on the house is steep, and the rain was coming, so we paid a crew to finish the house.

and last week the appraisal came back good, and passed through mortgage underwriting. and it seemed this afternoon that we were on track to close very soon – before we left for vacation. and then this evening we were informed that the insurance company (the one that was substantially less money for the policy than the three other quotes I got) was concerned about the condition of the roof on the new house, and we may not be able to get coverage if we don’t replace it.

ARE.YOU.EFFING.KIDDING.ME.?

so. on top of the down payment we’ll owe at closing, the good faith deposit we already gave, the new roof on our current house, the cost to have it inspected and registered as a rental property by the city, the new flooring we need in one room of the new house (seriously, NEED.) right away, potentially a new roof within 30 days of closing, potentially a couple of months with two mortgage payments (hopefully no longer than that!!)… plus the extra time off to actually get the new house ready for move-in, AND the actual moving itself…

where does that leave time and money for a vacation?

we’ve all been looking forward to this trip for ten months. Hubs & I discussed sending Goose and staying home, although we don’t like that option much. Hubs has also said he will stay home aline, but I can’t make a 18hr drive alone with the girls – even if we caravan with my sister…we don’t have the money to fly… and he also doesn’t want to miss Goose’s first time at Disney. I can’t imagine not letting her go though. it breaks my heart.
I’m trying really REALLY hard to think about all of my blessings right now, and to be thankful for the things we have, but it’s hard to find it right now under this crushing sense of disappointment.

I don’t know if we’ll get the house. I don’t know if we’ll get our vacation. I do know that we could really use a break right now… and some luck and prayers.

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when we started out on the morning of Friday, July 20th, 2012, we had no idea that our life was about to change drastically, if only temporarily, but when we left the cardiologist’s office shortly after 4pm there was no doubt that it had.

it took three pharmacy stops before we found a compounding pharmacy that could fill Gator’s scripts, which would have been stressful if not for the fact that we were still in a state of shock. we had called no-one yet, as neither of us had phone chargers in the truck.

it was 4:40pm before we got home, and my mind was a jumble of “who to call first?” my parents were the obvious choice, but because of the time, I called work first. my supervisor was on another call, so I left the message that I “needed to speak with her TODAY” and called daycare, but the owner had just left. I called her cell phone and had barely managed to say “hi Holly, it’s Rusti” before my throat started tickling… and a deep breath helped me get out the words “I need to pull the girls from daycare for a couple of weeks” before my throat closed up and my eyes started burning again. I could hear the questions in Holly’s voice when she said “okay…” and I don’t know that she could even understand me as I told her “Alli has to have open heart surgery” which was followed closely with “oh, my work is calling, I need to tell them, can I call you back?”

once I was able to actually speak so she could understand what I was saying, my supervisor was very sympathetic and understanding, told me to take as much time as I needed, said she would call Human Resources and have them send me the FMLA forms needed to extend my leave, and asked me to keep them updated. she asked if there was anyone I would like her to pass the information on to, and said we would be in her prayers.

I was slightly less of a mess when I called Holly back, as I’d already blurted out the hard part. telling her again wasn’t as difficult, but going over the details of how the murmur was discovered, etc. helped me focus and stay calm. Holly reassured me that the whole staff would be praying for us, and would be ready to help with whatever was needed for the girls. I promised to keep her posted as we knew more info. while I was making my calls, Hubs had called his sergeant and his dad. typically (for him, and probably a lot of men) his calls were shorter, less emotional, and more to the point. ;)

I managed to get my mom & sister in one call, as they were still at the mall after finishing at the bounce place – and funny enough, I can hardly remember the call. I know I called my dad next… and that during both calls it was asked of me “why are they waiting so long? can’t you go next week?” as they were concerned about Gator catching a cold or something that would delay surgery… I can’t remember calling anyone else, or if I texted them… but a short time later our friends Collin & Lisa arrived with food, and then my sister showed up with more food, and in a show of support – they helped us eat it ;)

around 7pm my phone rang and although I didn’t recognize the number I answered. it was Dr. Liz – on her cell phone – calling to check on us and see how we were doing. she had discussed Gator’s condition and treatment plan with Dr. Goble and wanted to follow-up on our emotional health. (have I mentioned that we love her?) after a few minutes of talking about what was going on she said “please call if you have any questions, obviously this isn’t my area if expertise, and I mght not know the answer, but I’ll try to get it for you. call to if you just need to talk. this is my cell phone number that I called from, so keep it if you need it.” I thought that was very thoughtful, and I found out later that when she first heard the murmur she was extremely concerned. she did a pretty good job of hiding it ;)

we sent the guys to a movie and hung out while Goose, Bug & CJ played and us gals took turns snuggling Gator. the rest of our weekend was pretty quiet as we quarantined ourselves at home and researched the hospital, surgeon, procedure, anything we could find related to Ventricular Septal Defect, Atrial Septal Defect and Aortic Stenosis, as well as hotels and the Ronald McDonald House in preparation for Monday’s calls to the hospital social worker and surgeon’s office…

I had posted our news on Facebook and The Twitter and had already been connected to some Heart Families who were sharing helpful and encouraging information, as well as tons of support, prayers, offers of help, etc. from fakily, friends, friends of friends, and strangers alike. a friend from high school started a prayer chain page and she & my sister kept it updated. all of those things are what carried us through the darkness of the unknown, and helped us see the light. we will never forget that.

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a year ago today… I’d taken a full six weeks off of work for maternity leave, and followed that up with four weeks of working Monday, Wednesday, Thursday… that time off used up the entire amount of paid sick, vacation and personal time I’d had banked, except for just a few days – because I knew I’d need to take some time off for well-baby doctor appointments and my own as-yet-unscheduled post-partum checkup.

it was Friday, July 20th, 2012… my last day to spend with my girls before returning to work full-time and I was feeling some anxiety… anxiety over being away from my brand new baby, and also wondering how well Goose would adjust back to mostly full-time daycare after two and a half months of going just a few days a week. I was also anxious because we had woken up late and were running behind for Gator’s 9am, 2-month well baby visit. and I mean “running late” as in walking-out-the-door-two-minutes-before-nine-with-a-12/15minute-drive late. I still don’t know what prompted Hubs to go with us that morning, as he rarely goes to those appointments – especially if vaccinations are taking place.

I called our doctor’s office to let them know we were running late and waited on hold as the receptionist checked to see if our doctor would still have time to see us… the Big Guy Upstairs was looking out for us that day, as even though Dr. Liz had to be somewhere shortly after our appointment and it would be a tight squeeze, she said she’d still see us. I will FOREVER be thankful for that.

the appointment started off as per the norm except that instead of the medical student coming in to take Gator’s weight, length & head measurements and vitals, it was Dr. Liz herself :) she entered the info into her laptop and asked if we had any concerns, at which point I commented about the fact that Gator hadn’t been nursing well the prior two weeks and I thought it could be related to lip-tie and tongue-tie. I’d been researching it and had received a postive diagnosis by a trusted, knowledgeable International Board Certified Lactation Consultant and was in the process of deciding whether or not to make the 4hr trek to Dayton, OH to have them revised… Dr. Liz checked out her tongue-tie and said she could clip it for us if we wanted at the end of our appointment, but wanted to get the rest of Gator’s checkup underway.

there was no sudden moment of increased tension, more like a mild curiosity, when Dr. Liz called in her medical student to listen to Gator’s heart… although that curiosity increased and was coupled with a tinge of nervousness in my momma heart when she called in one of the other doctors in the practice to listen as well – which grew slightly as I heard her say to him “VSD? that’s what I thought.” it wasn’t even when she told us that she’d heard a murmur that we became concerned, after all, she’d said that many times murmurs go away on their own – and I knew that I’d had one when I was younger that did so.

for me, the anxiety started creeping in when she asked if we had plans later that day or if we could go to see a cardiologist (if she could find one in the office that day, it was a Friday after all) because their machine that measures oxygen wasn’t working, but even that she was able soothe away by saying “it’s probably nothing, but with it being the weekend I would just feel better if you saw a cardiologist today” I don’t know if it was my blind trust in her, or if I was more naive than I knew, but I believed that she was absolutely right. it was going to be just fine, we’d get her vaccinations, go see the cardiologist and enjoy the rest of my last day of maternity leave.

when Dr. Liz asked if we could drive to a cardiologist an hour away if needed and then we overheard one of medical assistants on the phone asking “do you know of ANYONE in the area who is in the office today?” I started feeling the knot in the pit of my stomach. Hubs and I exchanged glances over Goose & Gator’s heads – they seemed to show the same level of concern… Dr. Liz came back in after what seemed like forever, it could have been five minutes, it could have been twenty-five. I can’t recall exactly how long we were there that day, but I seem to think it was close to two hours, when regularly the well-baby visits are less than an hour – including the shots.

I think denial had already started, or maybe it was some protective-shock-response because even when Dr. Liz sent us on our way (luckily to a local office) without vaccinations (because “they aren’t urgent, we can do them next week sometime” and her cell-phone number for the cardiologist with a request to be called after our appointment) I still stopped at the checkout desk to make an appointment for the vaccination and clipping of Gator’s tongue-tie. nothing about the entire occurrence struck me as completely and totally out of the norm too unusual, I don’t know if I thought this was possibly normal for heart murmurs these days. Goose was born Heart Healthy – this was a new experience for us.

I was even fairly nonchalant about it when my mom called to see if Goose wanted to go to a bounce place with her & my sister, nephews and niece. “oh, no. that’s okay, we’re on our way to see a cardiologist for Gator – yeah, she has a murmur so we’re getting it checked out… no, Goose can stay with us, it shouldn’t be too long of an appointment. yes, I’ll call when we’re done. love you too…” in hindsight, we should have sent her. by this time it was just about lunchtime, which is followed closely by naptime, and we had skipped breakfast.

the appointment was a bit of a blur… we were expected (and extremely lucky as it turns out. not only was this particular cardiologist part of the Mott Children’s Hospital – U of M, but she happened to be in the office and available to see us – on a Friday. a day their office doesn’t see patients. I mentioned the Big Guy Upstairs, right?) and were shown right into an exam room where Gator was once again weighed, measured, her vitals taken, and then – she had a bunch of sticky electrodes attached to her chest and abdomen for an EKG. it was a bit tricky for the nurse, Karen to get a good pulse reading, but she assured us that it wasn’t unusual. I don’t know if she meant not unusual due to the murmur, or because the pulse is hard to find on tiny 9wk old babies.

we met Dr. Goble and she took us right in for the Echocardiogram – which she told us, she doesn’t generally do herself, but their sonographer was not in the office that day. Gator was semi-cooperative, she didn’t fuss too much, but she was hungry and squirming. Dr. Goble was able to get a good enough look at Gator’s heart to make some determinations, and unknowingly dropped quite a bomb on us when she said that Gator “has a very large VSD, and small ASD, as well as a narrowing of her aortic valve… these can be fixed with open heart surgery, which we can get scheduled. how soon would you be available? I can check to see which surgeon is available and make the choice for you if you’re undecided…”

Dr. Liz had been trying not to scare us, which I definitely appreciate, but maybe if we had been given some type of idea of what to expect we may not have been so blown away. again, I’m so thankful Hubs was there that day, as I definitely went into Momma Bear mode, while he was able to stay calm enough to start asking questions. Dr. Goble finally left us to make a few phone calls to the Cardiology Team down at U of M to start making plans for Gator’s OHS. it was then that I hugged my sleeping baby tight to my chest as the tears started rolling down my cheeks. I never lost control, or became hysterical, I just silently cried sitting with the three pieces of my heart… one of whom whose was broken. I couldn’t fathom it. I couldn’t understand how just a few hours prior my tiny little girl had been perfect, and now she was broken… requiring a major invasive surgery to save her life. it was too much to comprehend…

my phone was dead. Goose had fallen asleep after much whining about being hungry. Hubs was lost in thought. and then Dr. Goble came back into the room. she had called and consulted with the Team, and it was decided that August 1st was Surgery Day. eleven days away. it seemed so soon… and yet, knowing that we would essentially have to be quarantined in our house so as to prevent any illness in Gator, it also seemed so far away. we placed our trust in Dr. Goble and Mott’s Cardiology Team when she said “if it were urgent, you’d already be in an ambulance on your way there” she made sure that she had explained exactly what CHD’s Gator had, and gave us printouts with detailed descriptions of each, and assured us that the surgeon we had been scheduled with was excellent in her field, and we would be in the best hands at Mott.

shortly after 4:00pm, after a very long day, we left quietly, carrying our precious sleeping daughters, both of us in a state of shock, with prescriptions to be started immediately to get the fluid off of her lungs (there was finally a reason for her having the “quietest cry” anyone we knew had ever heard… and for the fact that even at 9wks old she did nothing more than eat, sleep and poo… it was all her little heart could do to keep her body breathing) an appointment for the following Monday, and handful of paperwork and information sheets and the numbers for the hospital social worker and Ronald McDonald House…and a heart-stopping, down-to-the-bone fear.

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what I love about the holidays…

December 5, 2012

I love the giving spirit… I love the Christmas songs… I love the meaning of Christmas… I love the reason for the season… I love the family time (and the food!)… I love the joy on the faces of those I’ve given gifts to… I don’t love the cold weather, the holiday shopping stress or […]

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S.H.I.T. – So Happy It’s Thursday #23

November 15, 2012

I give you the reasons why I’m SoHappyIt’sThursday (in random order) tomorrow is Friday. ‘nuff said! it’s Opening Day of Firearms Deer Season in Michigan! unfortunately I’m stuck at work my little Gator is doing amazing – she turned 6mos old on Monday and is finally chunking up! she weighs 13lbs 3oz!! I have been […]

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just what I needed…

November 11, 2012

that’s exactly what this weekend has been… we had no solid obligatory plans, it was Hubs’ weekend off, and while my house is far from clean organized, I did get enough done to feel fairly productive. I’m sure I would have enjoyed the Girls Night In/thirty-one party my cousin had last night… or the MI […]

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how do they do it?

October 16, 2012

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So Happy It’s Thursday #22

October 11, 2012

I give you the reasons why I’m SoHappyIt’sThursday (in random order) tomorrow is Friday. ‘nuff said! it’s 10.11.12! how fun! one of my very best friends in in labor RIGHT THIS MINUTE at least I assume she is… the last update from her husband was almost an hour ago and she was close to 10 […]

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S.H.I.T.–So Happy It’s Thursday #21

September 27, 2012

I give you the reasons why I’m SoHappyIt’sThursday (in random order) tomorrow is Friday. ‘nuff said! Hubs & Goose are on their way home from up north!! Gator & I have missed them!! I have some wonderful people to call friends – even though I’ve never met almost all of them in person… thank you […]

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am I crazy?

September 26, 2012

I can’t remember if I’ve ever felt like this before… I know I’ve had similar thoughts and feelings in the past, but I think they were just short periods, like days, or maybe even a week or so where I felt like this, but I don’t recall it lasting this long… I’m sure I’ve had […]

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