A whole lotta catching up to do

First of all, I am SO sorry it has taken me this long to update the blog! 

We have been home for 20 days now. It has been wonderful being in our own home, sleeping in our own bed, being with Austyn every night, and being together every night. DJ has returned to work and is back into things full swing. I am adjusting to life as a stay at home mom, but things are going well. I can't complain about wearing pajamas all day long :) Ha! I would get dressed, but we don't leave the house ever. I promise, I put real people clothes on for doctor's appointments and things ;)

We are battling the acid reflux on a day to day basis. Some days are good; some are not. Yesterday wasn't too great, but today has been good thus far. Knock on wood. The Prevacid does seem to be doing its job, thankfully, and I think we just need to be super careful about making sure we try to burp Wyatt after every 30-40 mL's, so we don't shock his poor tummy. The Similac Sensitive for spit up seems to be doing the trick as far as formula goes. I am now taking Reglan ::runs off to take the dose I should have taken 2 hours ago:: to see if it will boost my sub-par milk supply. Trying to pump every 3 hours when you are taking care of a baby with acid reflux and you are sleep deprived is not an ideal situation, so I could definitely be pumping more frequently, but the logistics just don't work out. But, Wyatt is still getting breastmilk and all those antibodies, so that's good. He is continuing to gain weight well, weighing 8 pounds, 10 ounces this morning. I am SO thankful we are doing well enough eating by mouth and he didn't have to come home with an NG tube or a G tube.

He has to take Synagis through flu season, so his body could fight off RSV if he were to contract it. Getting that all figured out was a fiasco. I think it is finally done though, thankfully, and he will get his first shot on the 21st. With our insurance (UMR - for anyone wanting to compare), we have a $150 copay per vial of Synagis. At his current weight, he only needs on vial per month, but may require 2 vials as he gets heavier. Thankfully, our pediatrician's office gave me the phone number to a company who helps cover that cost, and we only have to pay $50 per vial. That is SUPER helpful. The office also gave us a ton of formula samples today, which will save us from having to buy that for a while. 

Wyatt is wearing a Pavlik harness for hip displasia due to his breech positioning, so we see a Orthopedic doctor about every 10 days for that. He doesn't seem to mind the harness as much as DJ and I do. It makes it much more difficult to change his diapers, put him in the car seat, and snuggle him :( I am hoping he won't have to wear the harness for a very long time. We see them again in a week, and it will have been almost 3 weeks of the harness by then. They are doing an ultrasound of his hip at that appointment, so we will see what sort of progress has been made.

I think life has become pretty routine for me at this point. Monday through Friday I get up in the morning (much earlier than I would like, as I am generally up with Wyatt from 1-3 or 2-4 am), get Austyn fed and ready for school, feed Wyatt, and get Austyn off to school. Then its just me and Wyatt all day, cuddling, feeding, diapers, checking pulse ox, recording pulse ox and feed information, taking weights, etc. I get things done around the house as I can. The acid reflux makes Wyatt very needy, wanting to be held all the time, and I oblige him. I figure he deserves it to the fullest. DJ comes home after work, and I get a bit of a break from Wyatt, while I get dinner cooked and ready, and we eat, do homework and bath time, play, etc. before its bed time.

While I am not happy that Wyatt has to have this heart defect, and our family has to endure this, I cannot say that I am unhappy on a daily basis. Thankfully.

When I was pregnant with Wyatt, I wanted information on the costs associated with HLHS. I couldn't find much. It seems no one wants to talk about it. And while I wholeheartedly understand, and agree, that your child's life is worth any amount of money, paying the bills is still a part of this situation, whether you like it or not. So, since I couldn't find the information I wanted, I have been compiling it, in hopes of providing it to another family someday.

The bills from the hospital have started to roll in. For me, my 4 day hospital stay was about $28,000 before insurance covered their portion. We owe $3000 or so out of pocket. I called to set up a payment plan, and we have to pay $184 a month for that bill. That was the lowest they would go. My OB's charge for delivery was $12,000 or so, us owing $3,200 out of pocket. I haven't gotten the bill for that yet, just the explanation of benefits, but I imagine the payment plan will probably be about the same. My spinal block was about $2000 before insurance, and we owe $250 or so on that, out of pocket. There were some smaller bills for labs, etc. for me as well. $20 here and there. Thus far, for my stay, $44,446 was billed to insurance, and our out of pocket cost is $6,882.

For Wyatt....its a whole lot scarier. We still have not seen the explanation of benefits for his hospital stay, or his surgery. But, even without those, $82,111 has been billed to insurance, and our out of pocket cost is $4545. The intensivists ranged from $600 - $15,000. The anesthesia for his surgery was over $8000, and we owe just over $4000 out of pocket on that one. A lot of our out of pocket costs haven't been calculated yet, because my insurance was waiting to hear from UMR to see what they were going to cover. My insurance (Cigna) is acting as primary for his hospital stay, so things are being re-processed. I am keeping track of each and every statement, explanation of benefits, bill, etc. that we get, to make sure things are covered correctly and billed correctly. I had to call the hospital because over $1000 was billed with my name listed as the patient rather than Wyatt's. Wyatt has a $3,000 deductible, which has been met, and a $6,000 out of pocket maximum, so in theory, the out of pocket cost for his stay shouldn't exceed $9,000. We will see how that goes. Then, of course, we get to meet it all again for his Glenn procedure.

Now, I do have this information on the cost of things, but don't ask me how to afford it. We received many generous donations from family, friends, and strangers, but even with those, there is no way we can pay upwards of $18,000 in medical bills and keep a roof over our heads and food in the fridge. I guess my plan is just to set up payment plans for everything, and cross my fingers we will be able to swing those until everything is paid off. Of course, this won't work, as the payment plan for my hospital stay is for 18 months, and we have another surgery and hospital stay before these will even be close to paid off. But, what else are we going to do? I assume a bankruptcy is in our future, I just don't know when yet.

And as I am now typing one handed due to Wyatt's need for snuggles, I will update again later. Hopefully I will get around to it sooner next time! ;)