We have a timeline!

(I started this before the zombie finger situation arose, so I’m just now getting around to finishing and updating at the end!)

Eddie and I went to MFS on Wednesday to have some testing done.  I had to get infectious disease labs (Eddie will have his done at our home clinic because his insurance doesn’t cover MFS for anything) and also had my uterine cavity study.  As it turns out, I have a cervix that doesn’t like to cooperate, so Dr. Reuter had a challenge getting the catheter through.  The test took about twice as long as it normally would have because she had to try several different styles of catheter.  She said this is one of the reasons they do this study, so that when they go in for the real thing, they know what they are working with!  The test wasn’t too bad, a little uncomfortable and crampy, but as it turns out, my uterus is in good shape for growing a baby!  No surprises, no cysts, nothing out of the ordinary!

While I was having that, Eddie got to do his part down the hall.  We had to pay out of pocket for that, which was $115, but that should be the only thing he will have to pay for at MFS–the rest will fall under my case.  We will get the results of his analysis within a week, but we don’t anticipate any surprises there either, since he had this done a couple years ago and was A-OK.

After our testing, we met with the nurse to discuss what happens from here.  They were very pleased with my weight loss, and I am now less than 15 pounds away from where I need to be for the IVF transfer.  Eddie and I were amazed to hear that within 6 weeks or so, we could potentially be transferring our embryo!  In about 3 weeks, once my next cycle starts, I will start on 2 weeks of oral estrogen.  From there I will get an ultrasound to see how my lining looks.  If it looks good, they will fertilize in the lab and let it grow for 5 days.  Then they will pick the healthiest embryo and we will transfer it into me!  From there I will have to be on intramuscular injections of progesterone oil (this is the part I am looking forward to the least), and then our two week wait begins.  After two weeks we have a blood test to check for pregnancy, and our hope is that the stars will align and we will be expecting!!!  Nothing is a sure thing, of course, but we have hope!

Edit: So this week is the week my cycle should be beginning.  I heard from MFS today that on day 1 I call them to schedule a day 2 ultrasound/blood work.  It’s a bit inconvenient to travel 4 hours round trip to get a quickie ultrasound and lab draw, but we will do what we have to do!  On day 2 is also when I will begin my oral Estrace (estrogen).  I’m expecting a call from the pharmacy that provides the fertility meds sometime today or tomorrow, so that we can get them shipped out and paid for.  I have no idea what the cost is going to be, which makes me a little nervous, but we will do what we have to do!  If you feel compelled to help us out with any part of our journey, there is a link to our fundraiser in the top right corner of the blog!

I’ve got about 10 pounds to go before I’m at my goal weight for transfer, and now that the stressful times have hopefully leveled off, I’m hopeful that I can get that taken care of in the next few weeks!  I’ve joined a weight loss support group that meets weekly, and having the accountability and support has been great!  Plus their scale is more friendly than mine at home is, so that’s a plus too:)  Anyway, that’s the update for now, more to come!

Expect the Unexpected

If there’s one thing my mister and I have learned in our 7.5 years of marriage, it’s that very thing: Expect the Unexpected.  Life in the LaRosa household is rarely predictable, and when it becomes calm and smooth sailing, we normally know that is the calm before a very large storm.  This time was no different.

Things have been going pretty smoothly for Eddie and myself.  We are both working, bills are paid and we still have money to have fun, we are planning to start a family in the very near future… this calm never lasts for long.  On Friday March 10, I stopped by Eddie’s work to see him, and he asked if I thought he should go to the hospital, as he shoved his finger in my face.  Now one thing you need to know about my mister is that he never EVER suggests going to the hospital, unless it’s serious.  The only other time, in fact, that he’s suggested going, he ended up having a life threatening condition called Necrotizing Fasciitis.  He could have died had he not gone.  He knows his body.

So as I’m looking at his finger, I’m seeing that it’s discolored and looking bluish/purple, and when I very lightly touched it, he nearly screamed in pain.  He had complained about a week prior that his last two fingers were kind of cold and tingly, but that’s not honestly out of the ordinary, considering he has some neuropathy issues from his cervical fusion a few years back.  But when it started changing color, he knew it wasn’t just normal.  So out to the local ER we went.  As we waited to be examined and see the doctor, the color began to get darker and more “dusky” as they called it.  They ran labs and a few other tests, listened to his pulse on a doppler, and determined he likely needed someone more specialized in hand surgery.  They weren’t sure, but believed he had a blockage of some sort.  The nearest hand surgery team was in Springfield, about 80 miles away, and we were given permission to drive ourselves there and had already been accepted by the plastic surgery/hand team, led by Dr. Nada Berry.  surgery 05  Once we got to the ER at St. John’s Hospital in Springfield, we were examined by a regular physician and his residents, and then someone from Dr. Berry’s team came to do an examination.  Her preliminary assessment was that he had all the symptoms of something called Hypothenar Hammer Syndrome.  It occurs sometimes in people who do a lot of work with their hands, such as mechanics, construction workers, etc.  and can be caused by excessive banging with the hand, that then leads to a blockage.  The only catch is that typically this happens to someone in their 40s-50s, and even then, only rarely.  In fact, this was such a rare thing that pretty much every resident in the ER was coming in to his room to learn about him.  In fact, he even was asked by the head resident if he could present a case study about him for teaching purposes.  Kinda cool… I guess!

So the plastics physician was pretty confident that he had a blockage due to what his symptoms were, but they were unsure if it was due to an aneurysm or a clot, but at any rate, surgery was in his future and we were being admitted.  Ironically, we were admitted to the Ortho floor, because that is where they had an available bed, which is normally why Eddie is in the hospital in the first place!  Once settled in his room, we met with the vascular team, who would be doing an angiogram later that evening to get a clear picture of the blockage and see if there were any others.  For this, they go in through the groin and send a little catheter/wire up through the body, through the heart, and then down his arm… and they found exactly what they expected: a blockage.  Basically, you have an ulnar and a radial artery that sends blood down your arms and to your hand.  His ulnar artery was completely blocked and no blood flow was getting through.  He also had a couple small clots by his fingers in his hand, all of which would need to be removed.  They likely would need to use part of an artery from his leg to graft into the affected area of the hand/wrist.  Surgery was scheduled for Sunday March 12.

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After about 6 hours, start to finish, Eddie was out of surgery!  Dr. Berry met with me and shared that he had a huge blockage in his ulnar artery, around 3″ in length, total, was pulled from the wrist.  Additionally, he had two smaller clots by the fingers that they removed too.  As planned, they did the graft from the leg.  Her main concern right now was making sure he didn’t have vascular disease elsewhere in his body, since he is so young for the hammer syndrome to happen.  She would be ordering tests to look at his legs and heart for additional blockages.

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Thankfully, all testing for clots elsewhere came back negative, but meanwhile, Eddie’s leg began to hurt quite a bit where they took the graft.  It became super swollen, so much so that his wound began opening because of the pressure.  It was determined that he had developed a hematoma (collection of fluid/blood under the surface) and the only way to get rid of one that large would be to go in for another surgery.  Eddie didn’t mind though, as he was in so much pain because of it, that he wanted that thing out of there!  It likely developed because he was on blood thinners for his wrist problem, but then they allowed that other gunk to pool and collect under the skin from the other wound.  So, on Thursday March 16, Eddie went in for his second surgery this hospital stay (Surgery 17 total!).  Thankfully this surgery was much quicker and they placed two drains to hopefully help with the fluid.

Our remaining days in the hospital were spent simply waiting.  Eddie had to have frequent checks of his hand right after that surgery, to be sure the blood flow was restored and continued to be, and all was well there.  Before he could go home, they wanted his INR (how thick/thin his blood is) to be between 2-3.  This can be a lengthy process to bridge from IV blood thinner to oral blood thinner, and it was taking forEVER.  We also found out that his hemoglobin was low, so over the weekend of the 18-19 (can’t remember which day!), he had to get two units of blood.  Because of this, it made his INR drop lower than it had been, and we were getting frustrated!  I had to return to work on Monday March 20, and I hated to leave Springfield without Eddie (I had stayed there since he was admitted).

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Ultimately, I headed home alone on Sunday March 19, but thankfully not for long!  On Tuesday March 21, Eddie was able to discharge!  His INR didn’t quite get to the level they wanted it to, but they were willing to send him home on injection thinners and the oral thinners until he was bridged over and at the therapeutic level for his INR.

Recovery for him has been rough this go-round though.  Having a bum hand on one side and a bum leg on the other makes caring for yourself a little difficult!  He’s also been in a lot of pain, which obviously makes things worse.  But there is certainly no place like home!  On Thursday March 23, we had a little scare though, as Eddie was feeling lightheaded, dizzy, off-balance, double vision, and pounding headache.  His mom took him to the ER just in case, to make sure nothing was wrong.  Being on the blood thinner and with his symptoms, of course they want to rule out a brain bleed.  But happily, everything was totally normal–even the INR finally!

It will be a slow road to recovery, and we will be following up with Anticoagulation Management Services (AMS) for at least a year, as they monitor his progress with the blood thinners and check him out to see if he has any kind of clotting disorder that we don’t know about.  But we will get there… we always do!

Many people have asked if they can do anything to help.  And I know a lot of times people say “let me know if I can help” but then so often, you never ask them for help because you don’t want to be burden on other people.  But the best thing that can be done to help us is one of three things (because Eddie will have missed a full month of work without pay): Food (meals or gift cards for groceries would be the most helpful.  Eddie’s not able to lift anything with his hand, so he’s stuck with only using his non-dominant hand.  Finger foods/snacks are easiest for him, as he’s not super coordinated with his right hand!); Gas (in the form of cards or PayPal would be super helpful.  He will have to travel back and forth from Springfield for several months as he heals, in addition to the transportation to Urbana to see the blood doctor for at least a year); Donations (I realize I just recently was posting about wanting to raise money for our IVF journey.  That can wait if we need it to–right now we need to just meet our basic needs financially, until Eddie is able to go back to work and we have steady income rolling in again.  The easiest way to donate would be to send through paypal to teale.larosa@gmail.com I realize some may think it’s tacky to ask for these things, but as I mentioned, so many have asked how they could help; Honestly THIS is how you can help).

Thank you to everyone for all your love and prayers of the past couple of weeks.  It’s been a roller coaster of a ride, but as long as my mister is next to me, the ride is always a little more bearable.

Monday Morning Musings

We got our first denial letter on Friday for our fertility services.  I put it on the back burner and chose not to worry about it until today (not that there was anything I could do before today, but I could certainly worry about it–it’s my specialty!)  So today I started by calling Health Alliance to find out more information.  They informed me that they didn’t receive enough necessary information, so a denial was automatic.  She couldn’t tell me what additional information would be considered “necessary” so I asked questions about if I needed to provide this or that and I got a canned response of, “Anything you think is pertinent.”

So then the phone calls to MFS to see if they can guide me any further or resubmit for authorization.  They are very helpful, and Mary in their business office is good at what she does, so I know she’s on it.  I had to leave a message and was called back within 20 minutes.  How awesome, especially for a Monday morning!

My final call was to the bank to set up a safety net just in case we end up having to pay up front for things due to insurance being a butt head.  If push comes to shove, we will pay what we have to pay and then hopefully be reimbursed partially by insurance.

You know, when people have children, they would do anything for them.  They fight for them, they advocate for them, they do what they have to do for their children.  We are doing that too, we are just doing it before the actual child exists.  We won’t be swayed by these roadblocks.  We will have our family, one way or another!  I spend my career advocating for others–now it’s time to do it for myself!

In the event you feel compelled to help us fight our fight for Baby LaRosa, please check out our fundraising link!  The help friends and family have provided thus far is wonderful and is truly a blessing!  https://www.razoo.com/embed/6s018g?embed=tile

Next Steps & Fundraising

I feel like a lot has happened since our last appointment at MFS.  In reality, not much has happened, but it feels like we are making progress!  First of all, I am down almost 12 pounds toward my goal of losing 30.  This is great news!  For those that have been asking me what my “baby diet” (as I refer to it) is, basically I am just following a low carb/high protein diet.  Not like crazy low carb though–I’m trying to stay under 100 g per day, and get my protein as close to 100 (or more) as possible.  This is essentially the same diet I followed post WLS, but I am consuming around 1400 calories a day, which is more than I could hold after WLS.  And clearly it is working!  I’m also tracking everything with myfitnesspal’s app, which is super helpful.  I’ve lost my weight so far with just the diet modification, no exercise.  Obviously in the beginning, weight falls off faster, so I don’t anticipate that the remaining weight will come off as quickly as this first chunk did.

We have been in communication with MFS to discuss our fertility plan and our next steps to work towards that.  I will share more details about our fertility plan in the coming days/weeks.  I was instructed to call once my next cycle started, so that I could get scheduled for my uterine cavity study.  They like to do this around the second week of your cycle to have the lowest risk of infection.  Essentially this is like a dry-run of IVF.  They will insert a small catheter through my cervix, but instead of injecting an embryo, they will inject saline.  They will then use an ultrasound to get images of my uterus so that they know what they are working with.  They want to know that my uterus looks healthy and that there are no unexpected surprises.  While I am having that lovely test done, Eddie will also be there for an appointment of his own.  His will likely be a lot more fun for him than mine will be for me.  Yes, he has to provide a “specimen”.  When he did this a few years ago, he was able to do so from the comfort of our own home and then deliver it.  This time, no delivery is possible when it’s a 2.5 hour drive!  Additionally, we both will have urine and labs tested for their routine infectious disease screen.

As part of our fertility plan, we are required to also attend a one-hour counseling session at a nearby behavioral health center called The Cabin.  Basically we are just having a consultation to discuss how to best cope with the process of IVF and the feelings associated with that whole process.  It’s basically an appointment to equip us with tools to enhance our fertility treatment experience.  Because we are located in Illinois and they are in Indiana, we are able to do a phone session, but since we will be there next week for all of the above tests, we decided to just go ahead and schedule in person.  So next Wednesday will be a very busy day for us–testing/procedures in the early afternoon, then our counseling session in the late afternoon.  Things are moving along!

Some of you may have seen my recent fundraising post that I shared on facebook.  We started a fundraising site through Razoo, as their fees are the lowest of reputable fundraising sites we researched.  There are details on that page (linked below) about the costs we are facing and how we will use the money that friends/family so generously donate to us.  Please don’t feel obligated, but if you are inclined to help us reach our goals, you have no idea how appreciated it would be.  Several friends have already donated, and I want you to know that we intend to be very transparent about what we spend the funds on–they will be used exclusively for our fertility treatment and costs associated with that.  What a relief it is to know that next week when we go for our counseling session (a $120 fee), half of that will have been covered by our sweet friends who donated.  Additionally, our gas for the trip has been covered as well.  We are SO, SO appreciative and thankful.

It was a hard decision to make to create a fundraising page–sometimes people give the side eye when people create pages to raise money for things that aren’t terminal illnesses or great tragedy.  The best way we can think to share why we created one was simply put: we felt we needed to.  Sometimes people are willing to help, but all you have to do is ask.  And if we don’t ask for your generosity, then we likely won’t receive it.  Eddie and I have had a tough 7.5 years of marriage, health-wise.  for 6.5 of those years, Eddie was unable to work full-time due to physical injury/disability (though not deemed disabled in Social Security’s eyes, so no income coming in for him).  During this time, I was the sole breadwinner, working at our local mental health center.  If you know much about most behavioral health centers, their employees are not paid extravagantly.  We made this work for 6.5 years and did not ask for help.  We did what we had to do.  Thankfully, we are both able to work full-time now, and I also work a part-time job, but we both make very modest salaries, ones that don’t afford the luxury of having an extra $20,000 laying around in savings.  THIS is why we are asking for your help.  They say it takes a village to raise a child, but sometimes it takes that same village to make a child too!

If you feel inclined to donate to our fundraiser, I promise that you will know where your money is going.  I will be sharing regularly what part of our fertility journey you helped fund!  And if you’re not able to donate, we would love if you shared our story with others who may be in a position to help financially.  Thank you so much for everyone’s support, monetarily and otherwise!

Here is the link to our site: https://www.razoo.com/embed/6s018g?embed=tile