Thursday, February 26, 2015

One month

Brooks was one month, adjusted, on Monday. We've been spending our time snuggling and playing with this little man:)

He's so sweet! He gets to kicking his legs and moving his arms, so cute!

I woke up to this face around 4:30am one day-such a precious little face.

Brennan being silly acting like a baby.

Brooks was mad that Brennan was playing with his mobile;) Not really, but this picture makes me laugh. Not that I want to see my babe crying (and believe me it wasn't for long!), but these 2 are so funny!

We had some snow flurries today so I had to make sure my birdies had some food:)

They were waiting on the deck for their turn at the bird feeder.

I knew we had one male cardinal and a female cardinal, but today I saw two males. So pretty.

Tuesday, February 24, 2015

Snow Day

We finally got some snow! Even though it"s just about gone, I still wanted to share. Our neighbor is very kind and drives his tractor over and shovels our driveway. Brennan loves to play in the pile that is left behind!

I don't care for a lot of snow, but one good one is nice for Brennan to get to go out and play. Then I'm ready for spring!

Casey and Brennan had a snow ball fight:)

Thursday, February 19, 2015

What 3 months looks like

3 months for Brooks looks like 8lbs of sweetness!

The nurse came to the house today to give his synagis (to help with the severity of RSV should he get it), which is a shot in the muscle similar to a vaccination-poor guy:( He did pretty good though, cried a little, but settled pretty easily. Thankfully we didn't have to get him out to get it because it is ZERO degrees here-eek!!! 

Brennan's school got called off today and I was so glad! I was hoping he would get called of school on one of my days off last week, but he didn't and I said last night I bet they would call off for the cold weather and they did! He has another cold, unfortunately, so I have been sanitizing and reminding him to wash/sanitize. He is good about not getting close to Brooks, but it was so nice the short time that he was well that we didn't have to worry about that and he could love on him again! He must have picked it up last weekend because he was sick before he went back to school this week. 

His sweet sleepy self♥

Saturday, February 14, 2015

Thursday, February 12, 2015

Insurance and co-payments and deductibles, oh my...

I love these lips!

First, the good news is that our pediatrician submitted for synagis (RSV vaccine-technically not vaccine, more antibodies to RSV) even though the hospital told us Brooks doesn't qualify because of new guidelines, but he got approved! They approved 2 doses for February and March. I think I mentioned before that RSV would be like a common cold in an adult or older child, like Brennan, but it could be deadly for Brooks. He could very well end up back on a ventilator or worse, not survive the virus. We are taking every measure to keep him away from it (among everything else), Brennan did not come close to him when he was sick before and even now he doesn't get in his face. We wash our hands really well, we don't take him in public. Renee is babysitting him for the first few months until he gets bigger so he doesn't have to be exposed to any kids, but it will still be nice for him to have the synagis, just in case. It doesn't necessarily keep him from getting RSV, but if he does get it, it should lessen the severity.

I knew it would be expensive because Brennan got synagis. At that time, 7 years ago, it was $1,500/dose and they are supposed to get it every month through RSV season (September-March). We got the letter in the mail about the approval so I texted our home health nurse this morning to see if she would come to our house to give it. Then a little bit later the specialty pharmacy happened to call with all of the info. So far, nothing has been billed to our insurance for the 6 days Brooks was in the hospital this year so we haven't paid any deductibles/out of pocket for this year. So we first had to meet our out of pocket and then the insurance is only paying 80% and we would be responsible for 20%. That brought us to a grand total of $1,700 for one dose-out of pocket. She said the drug company has a co-payment program so she checked to see if we qualify and we do! I didn't even know about this, but apparently alot of very expensive medications have these programs, it never hurts to ask. You can't get any aid from the state and we don't so that helped us. But basically, the drug company (for this particular medication) pays $2,000/season for the medication and all we have to pay is $30. Now after this dose there will only be $300 left for the next dose so I don't know what that dose will cost, but at least for now we are only paying $30. AND that $2,000 they are paying is paying for our out of pocket from the insurance, which is a bonus. Another bonus it that our nurse is going to come to the house to give the injection {boo for a shot:( } but we get a weight sooner than we thought we would. I'm not sure when she is coming yet, but I will update his weight as soon as I know! I'm guessing around 8lbs:)

I wanted to write about my insurance/claims experiences for this pregnancy/delivery/NICU stay in case this can help anyone. It seems like every year we fork out a ton of money for medical expenses...all being from me. I don't have an chronic conditions per say, but I have had 3 difficult pregnancies, a miscarriage requiring a D&C, appendectomy, hip replacement, IVF, I have a blood count disorder that required a bone marrow biopsy at one point. So any random, weird thing you can think of, it would probably happen to me. 

Medical care is soooo expensive. I work in healthcare and it is still outrageous for me and for not that great of coverage. I work part time so my benefits are more expensive to begin with. I was on Casey's insurance, but when I found out I was pregnant and still in the enrollment period for my job, I got my benefits because I work for the health care system I knew I would use throughout my pregnancy. If anyone has worked for a health care system, then you know you get better coverage if you use their facilities. So when I signed up, I thought all I would pay was $1,000 for pregnancy/delivery. Welp, that turned into $2,000 because while the out of pocket for the facility I was using was $1,000, the physician out of pocket maximum was $2,000 and I saw my physician ALOT. Probably close to 30 times during my pregnancy. So $1,000 turned into $2,000. Then I added Brooks to my policy because I knew he would be in the health care system I work for. So I thought we would be considered  a family plan and then would only have to pay an additional $1,000 for him (totaling $3,000 for family). Oh no, he was a separate individual so it was another $2,000. yay. 

So the bills start coming in and I paid for my doctor office bills throughout my pregnancy, but once I finally got the answer on the $1,000 vs $2,000 out of pocket I started adding every single EOB (explanation of benefits). The EOB comes from the insurance and tells you in detail what the insurance is paying, what the company that is billing is writing off (usually due to a contractual agreement) and what you owe. So I added up everything billed by my doctor, labs, facilities, etc. One bill was never submitted for $255. I also had to take an ambulance from one hospital to another before I delivered so I got an additional $400 bill for that after my insurance paid even though my EOB said I only owed $50. So I printed my EOB and highlighted where it showed the $50 co-payment and sent my $50. Well, I got a letter saying they aren't contracted with my insurance and that I owe the remaining balance. I didn't pick the ambulance company so I shouldn't be responsible! I called them and they said I could call the insurance to appeal it so I did. They told me I did not have to worry about paying that part and they would work something out with them. So I'm glad I didn't just pay the bill! I'm sure in the past I have paid something like that not paying attention! So another way I saved money is I noticed on one of the bills that it said we may qualify for a discount if we pay our bill in full so I inquired. Sure enough, we got $400 knocked off of Brooks $2,000 bill. The bill that didn't offer a discount, I set up a payment plan.

So, next we got another $1,100 bill for Brooks. We switched insurances to Casey's plan this year so we're all on one now and I thought the bill was for the 6 days this year that Brooks was in the hospital on our new insurance. Nope, they had billed our new insurance for one day in December (and since that was the only claim, our deductible/out of pocket kicked in, that's why it was so much). Our new insurance should have pushed it back, but they paid it so they didn't question that it should have been billed to my insurance from last year. I called on that one today and they are resubmitting the claim to my previous insurance so that should be covered. I still haven't gotten the bill from the 6 days he was in this year. My friend said her doctor office offered a discount on her bills for office visits, but mine didn't-worth checking into though!

Obviously, he is worth every penny in the whole world, but my point is pay attention to everything you are billed!

Wednesday, February 4, 2015

Miracles and Hope

I wanted to do this post for a few reasons, mostly because if someone comes across my blog that has traveled a similar road I want to give them the hope that I needed and held onto for so long and it is always healing for me to reflect on how far I've come through this journey.

There were so many times that I wanted to blog about our daily struggles with having another baby after we lost Reese and Scotlyn. I would vaguely mention it in some posts, but it was so hard because nothing is ever a sure thing when you are dealing with not only infertility, but the risks and complications that come with a pregnancy like mine and the weeks turned into months and the months into years, before long it didn't seem like it was ever going to happen.  I know there were people who didn't understand why I couldn't just be happy with having Brennan as our only child on earth after Reese and Scotlyn died (July 2010). It wasn't that I wasn't happy with having only him-he was pure joy and he got me through the darkest part of my life, but even before I had kids I never envisioned having one child. I don't think there is anything wrong with having one  child, but I always pictured having 2 or 3 children. Then when I was pregnant with Reese and Scotlyn, I of course expected to have 3 children at home. My vision became a reality. When you're pregnant, you prepare for your new life with your child or children, you plan everything out in your mind, you envision your life as it will be when you have those children. I remember even having a conversation with my aunt after Reese and Scotlyn died about how it felt strange to feel like they were missing from every part of our life-our house, riding in our car, participating in activities with us when they had never physically been in those places, but you picture and plan all of those moments and memories when you're pregnant. It's a very raw feeling. So besides for the fact that I had always wanted more than one child, I was missing my two angels, and while nothing could replace them, I still longed to raise another child. Raising Brennan was the best time in my life and I wanted that experience again. I wanted Brennan to have a sibling here that he could play with.

So, after two extremely high risk and complicated pregnancies, the last pregnancy ending with the death of our babies. I was numb. I was numb with the pain of losing my daughters and I didn't even know where to begin to look forward to the future. I needed time to grieve, but I also needed hope. I had none, I had already vowed that I would never get pregnant again because it was too risky so where did that leave us? We tossed around the idea of adoption, but Casey didn't want to adopt. I think there are so many possible negative outcomes to adoption that it makes it scary to put your heart and hope out there for something to possibly fall through. I was willing to do anything, but Casey had a harder time. Our next option was surrogacy. That seemed completely unrealistic. For one, we don't have endless amounts of money for IVF and especially not to pay a surrogate.  We actually had 2 people offer to be a surrogate, truly offer. And that was probably the first glimpse of hope that we got and that was almost 6 months after Reese and Scotlyn died. 

So we really started a serious discussion with one wonderful woman who offered. She was amazing. We discussed all of the details over the next 4 months.  There is so much that goes into surrogacy. Some states don't even allow it, some states have strict rules. Illinois is actually pretty simple-they do have a few requirements. The surrogate has to be at least 21, had one child, there has to be an attorney to write up a legal contract, they have to deliver the baby in Illinois, the surrogate has to have a medical and mental evaluation and have health insurance. We didn't technically have everything when we did the transfer, but figured we would deal with whatever legal fees we needed to if it were to be successful (which probably would have been similar to adoption) We know this person well and there was no question that there would be any legal issues. Especially since she was a gestational surrogate, which means the baby is my and Caseys, she would carry the baby. We did IVF for egg retrieval in April 2011 and fertilization, it was my eggs and Casey's sperm. I did what is called mini IVF, it was less stimulation and I didn't think I would need much stimulation anyway since I conceived twins on just one round of low dose clomid. We retrieved 5 eggs and all 5 eggs fertilized on day 3. This was wonderful news, our first step to surrogacy was a success. In July, we transferred 2 embryos to our surrogate. She was so wonderful through everything. Obviously that doesn't even need to be said knowing she even offered to do this for us, but she had to take injections of progesterone in the muscle (hip/butt) and they are painful! She traveled from Pennsylvania and stayed here for everything that needed to be done. She endured all of this for us, to make our dream come true. We had to wait 2 weeks after the transfer to get her blood drawn to see if she was pregnant. We got the results on July 25th, the day after Reese and Scotlyn's 1st birthday. The result was negative, she wasn't pregnant and it was not a success. We were devastated to say the least. I wanted a glimmer of hope after the darkest year of my life and it was shattered. Not only was I grieving the loss of Reese and Scotlyn, I was now grieving the loss of this chance to have another baby. 

Our surrogate had a very rough time with the results as well. Emotionally, we both needed a break. In the meantime, I continued to search success rates and IVF and started to question some of the practices my doctor was using. The mini IVF, freezing the embryos at 3 days rather than 5 days, some of post transfer recommendations. I was of course searching for any reason that this wouldn't work (or more so what can we do different so it does work). Obviously, IVF isn't always successful, but we didn't have a lot of money (or a lot of embryos) to take chances if there were changes that could be made. I ended up meeting with two other fertility specialists and looked into taking our embryos to another doctor. One doctor didn't think the way my eggs were retrieved and the embryos frozen was a correct process and he didn't think another transfer would be successful. Another doctor did think it could be successful. We were really in a tough spot. We had used my retirement money from my first job for the IVF and we paid cash for the attorney, medication, and any other expenses that came along with it. Another transfer was going to be about $3,000-5,000. 

 I had seen a perinatologist after I delivered Brennan to discuss my risks of another pregnancy. She had done a lot of blood work and we discussed the risks and chances of pre-eclampsia in another pregnancy. Well, thats pregnancy was with Reese and Scotlyn. (Besides my miscarriage at 6 weeks after Brennan) I had seen 2 other high risk doctors during my pregnancy with Reese and Scotlyn, but it wasn't for conception, just for the actual pregnancy. It had essentially been 4 years since we had discussed anything preventative that could possibly make a difference in another pregnancy. So, even though I swore I wouldn't have another pregnancy, I was feeling like I was running out of options and wanted to at least explore the idea with possibly new research, medications, etc. I had seen a lot of success stories of women with stillbirths and pre-eclampsia who had successful pregnancies after their loss. So in October 2011, we met with a new doctor (who ended up being my doctor with Brooks). He looked over my history and medical records from all of my pregnancies. He was very thorough. He found that Reese and Scotlyn both had blood clots in their placentas. Pre-eclampsia is caused by a malfunction/restriction of blood flow in the placenta. He also found that Brennan had infarcts in his placenta, which is basically tissue death and could have caused restricted blood flow as well. He also ran blood work and found that I have MTHFR C677T. It is controversial whether or not this needs to be treated during pregnancy or otherwise, but he said the few research articles that support it are the ones that he feels were the best ones. So his plan was for me to take folgard (extra folic acid), lovenox injections (blood thinner), aspirin, low dose steroid, and progesterone throughout the whole pregnancy.

Casey was not thrilled with the idea of another pregnancy. We discussed our options over the next 4-5 months. We were both skeptical that an embryo transfer would work and were afraid to go through all of that again, emotionally and financially, for it to not be a success. In March 2012, we met with the high risk doctor again. We needed to be sure we were making the right decision in pursuing another pregnancy as we were both very nervous (Casey still wasn't on board). He explained everything again in great detail. I also had to meet with a new hematologist because of my blood count disorder. So we decided to try for another pregnancy using my doctor's new plan. The next hurdle is my infertility. It is not severe, but I still could not get pregnant on my own. I couldn't use a fertility medication because I couldn't risk getting pregnant with twins again since it was so hard on my body and knew a successful pregnancy was doubtful if that happened. I tried to use progesterone to help regulate my cycles, but by the end of the year my cycle was even more out of wack. So I decided it was time to see a fertility doctor. By the time I got my cycle back and had my first appointment I had a sinus infection and I was on antibiotics. The doctor didn't want to do anything because of the antibiotics I was on so I waited through another cycle. If you have every tracked cycles or struggled with infertility then you know even one cycle is like an eternity! I ended up having that sinus infection for 3 months. So every time I went back, he wouldn't let me do anything until it was cleared up. I started having hip pain around this time, too. Honestly, I ignored it because I didn't want to go to the doctor and have something else to keep me from getting pregnant. So now it's March 2013. My sinus infection is clear, no antibiotics and I'm waiting for my cycle to come so I could go back to the fertility doctor. The day before Easter I went to get out of bed and almost fell down because of my hip. I could barely walk and ended up using crutches for a short time. I had no choice, but to see a doctor. The result was that I had to have a hip replacement. What the WHAT?????? I was floored. I never dreamed that would be  the solution to the hip pain I had been having for the last few months. But it was. I had Avascular Necrosis (AVN) in my right hip (and left, but not as severe). It is basically lack of blood flow to the ball in the hip, well mine was so necrotic that the bone collapsed, which is why I had severe pain and couldn't walk on it. The solution, a total hip replacement. A pregnancy was out of the question until I recovered. It was almost like a joke, could one more thing stand in the way of my dream. Now it's been almost 3 years of hoping and dreaming of another baby. But just a few short weeks after I found out I would have to have surgery, on April 26, 2013 I had my hip replaced. The recovery was awful. I had lost 65lbs since my pregnancy with Reese and Scotlyn, I was doing yoga and I was in the best shape I had been in a long time and it was a very difficult recovery. I couldn't even lift my leg after surgery. The first time I got out of bed in the hospital, I passed out (which wasn't necessarily the hip, more low blood pressure so I had to stop the IV pain medication). Once I got home, I had to have someone take care of me all the time for the first week. I had physical therapy in the home. I worked as a floor nurse and I couldn't even go back to doing that. It was a good 6 months before I felt even remotely close to being back to normal, even then I still had work to do. And I still don't have full range of motion. 

In one of my follow up appointments, I did get the okay to try to get pregnant. So in August that year I went back to the fertility doctor. I finally did a monitored cycle and took medication to help prolong my cycle to get pregnant and it didn't work. After that cycle I started a new full time for an insurance company. I had to stop floor nursing and move to a job that didn't demand as much physically. Since I was working full time and at a new job, I couldn't take off work to go back to the fertility doctor until I earned some days off. I tried some natural supplements that my friend recommended in the meantime. Do I dare admit that I even tried very small doses of clomid that I had left over. I was desperate. Every cycle-not pregnant. I worked at that job for 5 months and left. It was so terrible, I didn't even have another job when I left. So as soon as I quit, I went back to the fertility doctor. 

So this is March 2014. I did 2 cycles that were unsuccessful and then my third one I took a medication like clomid, but is less likely to produce multiples. I started a new job on May 12th and on our 8 year wedding anniversary, May 13th, I got a positive test. Little Baby Brooks was conceived! I couldn't believe it, I was very nervous, scared, skeptical. After all we had been through, it was extremely hard to believe the result would be a real live baby that I would get to bring home. I immediately made my appointment with the high risk doctor. The pregnancy is a whole other post in itself! 

When I found out I was pregnant I had just started my new job (the day before!). Every day when I would walk into work, I walked by this fountain that has the quote below etched out along the edge. From where I walk by, I could only see the first verse so I looked it up and this is the whole quote. Every day I walked by, newly pregnant, I continued to hold onto hope that this pregnancy would bring us our dream baby, our rainbow, our miracle. 

These are all quotes and sayings that kept me going through my journey. I didn't search for them, but I did find meaning in each one when I happened upon them over the years. I saved them all because I hoped that one day my dream would come true and I would know why I held onto every sliver of hope I could find.