IVF Round 2 - Failed.

I haven't written much lately. I have a million drafts that I cant bring myself to post. Most of them I feel are too raw and are written in such a low depressed state that I feel its just going to make people sad especially with no silver lining in sight as of yet. I feel like I've been finding new ways to cope and live life after everything changing so abruptly two years ago. Lately I have just been sort of floating by trying not to think so much about how badly we want a family of our own, if we will or wont ever have it, while dealing with whatever medical protocol we are currently on at the time. Every time I think I'm doing things right or at least heading in the right direction. Lately I just feel like I'm slowly losing myself and the desire to do things that used to make me happy. After our first failed round I really focused on me again and got my self in amazing health. I felt good. Justin and I decided that it was time to stop letting our faith linger in the in between and that we needed to read the Bible for ourselves to really form our own opinions and find faith stronger and clearer than ever before. I feel like after every loss we try to find a new way to improve and be better and stronger and move forward. I know this is a good thing, but it sure does make things hurt so much more when they still don't work out. The amount of strength that it takes for you to even be positive again and further more, really let yourself believe in that positivity really opens your self up for such a deeper pain when you're let down yet again. I feel so defeated, so unbelievably tired, and so lost.


Our second IVF round has failed. Our first official beta test on Monday and my hCG level came back at 4.5. Our hearts just sank. I was happy to have hCG in my system at all, but I knew this number was bad. Technically your level should be >5 to even be considered a pregnancy at all. By this time in the process your hCG level should be >100 to indicate a strong pregnancy. We were told to come back in two days to retest. The second beta came back at 7.5. Oh what a way to toy with emotions.... The level increased. Typically that's a great thing.  It was so easy to feel hopeful again but at the same time, if 7.5 was our initial number, it still would have still been bad. So we were told to come in for a 3rd beta. This one came back at 3. I was told to stop all meds, and that they call this a biochemical or chemical pregnancy. For those of you not familiar a chemical pregnancy is another term for a very early miscarriage (around 5 or 6 weeks). I was pregnant but the embryo didn't continue to grow or didn't implant completely/correctly. How we so desperately hoped that God would somehow bless us and intervene with some type of miracle.


Its amazing how easy it is to quickly spiral back down to the bottom. How this one test result creates a domino effect of everything that is suddenly wrong in our lives. I had hoped that with reading the Bible that I would find some comfort or confidence that I could fall back on. Instead I just think of all the early chapters that we have went through that indicate that children are a blessing and situations of those who were being punished or were clearly not blessed would not have children. It shouldn't be so easy to feel so low about your self in the eyes of God no less. All I hear is of his love and I want to feel it like everyone else seems to. I don't want to sound like I don't have faith or that I am questioning God or faith. I know the verses that say that he will have great things for us and that its his plan not ours. I just wish I knew if those plans were one in the same. And in the meantime I feel so left out and alone.


Lately I've tried so hard to not compare my situation to where anyone else is in their life. Its hard because I don't want to compare, but everyone around me is having kids, is waiting for us to have our kids, making plans and dreams about our kids playing together, etc. I just feel like I'm on the outside of some club waiting to get in. I want to do these things! We have been ready! Liam should be playing with my friends and families kids. I should be doing all the things we planned to do with him in addition to his sibling we would have had by now. How perfectly it would have all worked out. I'm working so hard on a dream that is out of my control. I'm happy that I don't feel spiteful, or jealous, I just feel like there's something wrong with me. It feels so lonely. So un-relatable, cruel and isolating. I turn to a lot of my support groups with fellow IVFers. Its so amazing when they have successful rounds and they get to move on with their life with a promising pregnancy. But its also so hard when you see others that have had 6+ rounds with no luck at all and even worse, watch those stop pursuing at all because they simply are drained of funds or of the mental and physical demands that it takes. People say it will happen, and it can, But I've also seen so many examples of when it just doesn't. Ever. I feel so crazy wanting something so badly.


On top of all of this with myself, the worlds issues also pile up making me feel even smaller and more insignificant. Terrorist attacks, shootings, police shootings, politics, the election.... I just wish things were simpler, purer. I don't know how the world became this. It makes me fearful of so much. It makes me question so much.


How easy it is to wallow in self pity... I hate it deeply. I hate sharing it. But more so I would hate for anyone else to feel that they are the only one that feels this way. Its okay to feel this way.... Its a healthy stage in grief. Its necessary. I spend a good day earlier this week when I came to terms with the outcome dealing and feeling this way. Today it was all opened up again when we got the final call.


Yet, still, somehow I feel calm. I feel like it still isn't the end and that we just need to keep going. As much as it hurts, we've been through this and worse before and we will be okay. I'm so thankful to have such a rock of an amazing husband who puts up with my roller coaster of emotions and is hand in hand with my on this journey. A husband who's been nothing short of supportive, positive, loving and caring through it all. No matter the end result I know I will be okay with him. I still believe that God has a plan for us and I have to believe its wonderful. I still intend to continue reading his word with Justin and grow from it. We still have 7 chances at this. I'm not as far to even think about the timeline to expect, fathom the funds, or prepare myself physically and mentally yet, but we still have 7 chances. Seven healthy, disease free frozen in time chances. I am more overwhelmed by those blessings alone that it helps me see past the bad. If Liam wants more time being an only child and is busy picking out the most perfect beautiful souls to send down to us then so be it. We will always have his memory. If it wasn't for the life changing love that we got to experience through him I don't know that we would even have the strength to keep fighting this hard. He changed us forever.


One day, we will have the best most amazing happy news to share with everyone. It will be one of the best days of my life. I really hope that this is finally the end of the bad and that things can only get better from here on out. It does in a way comfort me to know that so many of the happiest parts of my life haven't even happened yet and that they are to come. I cant thank everyone enough for being on this wild ride with us over the last two years and always showing support and love. We are very blessed. We love you all, and thank you.

Round Two: Transfer Day

Ah, Transfer Day for round two.... How different was this transfer for us compared to the first one. I sipped my last sip of wine four days prior, we meal prepped for the week 2 days prior and enjoyed the day before just us relaxing and listening to the surrounding areas lighting off fireworks in celebration of 4th of July. I was calm. I was relaxed. I was confident.


The next morning, I woke up and put on my face for the day along with my "comfortable transfer ready outfit" and headed out for breakfast. After devouring my short stack of Smores Pancakes with bananas we headed to acupuncture. I laid there listening to my indie music zoning out with 9 needles in my front side while Justin silently read his Sherlock Holmes. After we finished there we arrived at Red Rock Fertility Center, got our procedure bracelets and waited to be called back. When it was finally our time, I changed, and was set in our transfer room. A bit more waiting and in came the Dr and the embryologist with an incubator that had our little embryo in it. Less than ten minutes later we were finished and left to relax for a short time before returning home. We said a prayer together, relaxed and came home.


I've been so surprised at how different I feel this round. I don't want to be misleading, I still freak out like a crazy person, but its much less often! I feel so confident and calm. I try to really keep my mind busy on other petty things and the idea of the dream of a family instead of the stress of wondering if this worked or not.

The two week wait was hard the first week because its too early to feel any symptoms and all you want to do is take a pregnancy test at home to see if anything indicates whether he's sticking around in there. I tested on day 6 and day 9. The lines are extremely hard to see in this photo, but they were just faintly there. On day 6 there was no immediate second line. A few hours later there was a very, very faint line. It was enough for me! Our first round we didn't have any positive tests so this was already so reassuring for us. On day 9 I tested again and there was an immediate faint line. After this I was good. I felt like at least something was happening in there and we just had to wait out the results at this point. I had two days of extreme exhaustion (which was normal with my previous pregnancies) and a few other symptoms. However the progesterone in oil injection I was still taking daily had symptoms that mirrored pregnancy symptoms so besides the tiredness I tried not to read too much in to those and just enjoy the rest of week two.


All in all I feel that this went much better than our first round, and I'm really proud at how well I feel I did mentally stress and anxiety wise. Now we are just cautiously looking forward to results!

Liam's Upcoming 2nd Birthday Anniversary

In the past, we have done balloon releases for Liam. As beautiful and healing at these are to watch, I can’t help but feel guilty for polluting our world and putting animals at risk to benefit ourselves, especially knowing that it was on behalf of our son. This year, I would like to do something different. So many of you want to remember and celebrate the day of Liam’s birth (March 25th). Justin and I don’t want to do a party, cake, singing, etc. We tend to celebrate this day in a different way, together. However, for everyone who’s thoughts are always with us, always caring, and searching for their own way to heal or recognize the birth of our handsome little guy, I would love to offer some ideas. I have compiled a list of my favorite random acts of kindness and even added some of my own. For the month of March, if you would like to participate, do something remarkable in honor of Liam. Donate your time or used items to someone. Show kindness at a time you may have otherwise overlooked the opportunity to. Do an unsolicited good deed for someone else, just because. Do something that our community and environment will benefit from. Liam’s passing shattered, crushed, and destroyed so many things that I never even knew I had and was taking for granted. My innocence, hope, and faith to name a few. I know it rocked these things and more for so many others in his and our lives. Amongst all of the darkness, It would be so nice to bring so much light to the world from his remembrance. It would be so comforting and wonderful to know that Liam is the reason for such extra kindness in the world no matter how big or small the act is. I'm looking forward to seeing so much good come from his wonderful life. Lets be an example that tragedy does not only bring out the opportunity to be angry and harden. It can be a reason to be better, appreciate more, give more, forgive more, and love harder. Happy birthday month baby boy. ♥

The Future - Results are in.

As discussed in The Results Liam's autopsy revealed a disease called IIAC (Idiopathic Infantile Arterial Calcification). Lets break that down.

Idiopathic - A disease with unknown pathogenesis or apparent spontaneous origin.
Infantile - Affecting an Infant.
Arterial - Involving the blood vessels that carry blood away from the heart.
Calcification -  The accumulation of calcium salts in a body tissue. It normally occurs in the formation of bone, but calcium can be deposited abnormally in soft tissue, causing it to harden.

The best way for me to understand it is to think of the calcification as ice. Ice that formed over his arteries causing them to harden overtime until they were unable to function leading to the inetivable. How I understand it from the point of this disease is that the chromosomes that were responsible for contoling this calcification were not formed as they should have been - due to the genes he received from myself and Justin at conception.

IIAC is a Autosomal Recessive disease. This means Justin and I both carry an autosomal recessive change (mutation) in our genes. We are uneffected carriers which means we are perfectly not affected by this and until now had no idea about any of it. We have a 1 in 4 chance of passing both of the malfunctioning genes each time we concieve which would result in our potential child developing the disease and in that case would most likely have the same fate as Liam. We have a 2 in 4 chance of passing one abnormal gene making our potential child an uneffected carrier (like us). We also have a 1 in 4 chance of not passing the mutated gene at all and having a potential 100% unaffected child. 

More simply put - Here's a diagram to break it down further.

 

I know thats alot to take in, understand, and accept.

After meeting with a genetic counselor and waiting months to get a straight answer, we finally have all the pieces of the puzzle. Im honestly going to try and make this as easy as possible to understand. I barely have my head wrapped around all of the terms and meanings and Ive done hours of extensive research and genetic counseling.

A miccroray test showed that Liam had a deletion and duplication on chromosome 14- But - this deletion/duplication has never been related to any previous case of IIAC or anything else that has ever been documented. This was REALLY frustrating for us. They still said Liam passed away from having IIAC, and that he got it from us, but yet, there didnt seem to be any proof other than the calcification they found in his arteries after his passing and the lack of any other guesses. However, we kept trying and found that somehow some of Liam's DNA was secured in a lab from one of his previous tests or autopsy. Thankfully it was enough for DNA sequencing which will allow them to look in more detail at his DNA. This was a miracle.

The DNA sequencing did show the original deletion and duplication on Chromosome 14 as the microrray but also showed an additional change in a different chromosome that IS known to coinside with IIAC. So, In summary, Liam had the change in one of his genes that caused the disease that did come from us. The other change with Chromosome 14 is unrelated. Our genetic counselor reassured us that many people have different changes in their DNA that doesnt affect them at all and are never even identified, and that we shouldnt be overly concerned with the change in Chromosome 14 considering it may never even reoccur.

The change that they found that supported his diagnosis however was the concrete proof that we needed to know to move forward. They also looked and my and Justin's blood and they confirmed the changes we have in both of us that were passed on to Liam. So finally all the peices of the puzzle fit and I can finally have a little trust in our medical field again.

So, Next question, WHAT. DO. WE. DO. NOW.

The reason why we continued to sit in this "in between" limbo and go through all of this testing is so we could find out what our realistic choices for a future were. Without knowing the specific genes that were affected in Liam, we wouldnt know what caused it. If we didnt know what caused it, we wouldnt know what to look for to test prenatally in future pregnancies. We did all of the regular tesing and screenings with Liam during pregnancy and after he was born and nothing ever came up. At least now we know our options and what to test for specifically in the future.

We cant go through IVF, or a surrogate unless we used a donor for either the sperm or eggs. Neither of us want to do that at this time. We could do a Pre-implantation genetic diagnosis by in vitro fertilization (IVF PGD). They would look at all of the possible embryos and only implant the ones without any chromosome abnormalties and we would just hope that one of them stick. The good news is it would almost garuntee that we have a healthy baby, but the chances of even getting pregnant let alone have a successful pregnancy with IVF is less than about 50% and it would still cost over $10, 000.00. We have at least a 75% success rate trying naturally. We now know we can do specific genetic testing while Im pregnant at around 12-14 weeks to determine if the baby is healthy or if they have IIAC. But the fact that we may have to face the reality of another natural loss, an another affected baby, or the choice of even thinking about having to potentially "term" for medical reasons becasue of a disease that has no cure is completely devestatging. These are the risks that we are taking, heavily. This will be the wieght on our shoulders for months. I know it will definetely be some of the LONGEST days of my life.  We are hoping and wishing and even trying to pray for the obvious the best case senario of getting pregnant, finding out the baby is negative for chromosome mutations and we could move forward with enjoying a normal pregnancy and evanutally welcoming a healthy baby!

I never expected to have to live through any of this sick twist of fate that was before me. I really thought we had it all figured out and would just live in our own little happy bubble. I ache every day for the son I dont get to have with me, here, in person to love, watch, and hold. I surround my self with so much of him, so I can always feel like hes near. I feel awful that his was the life he was born into when he deserved so much more. I hate that this happened to him. I hate there was nothing we could have done. Its made me question everything Ive ever believed in and I hate that nothing will ever be as good as it was. Even if we have more children, Life will be wonderful, but it will never have the innocense that it should. I still have such a desire to have a family. To have more babies. The amount of mixed feelings I have about the road that must be traveled to even try and pursue that dream is pysically and emotionally exhausting. Its also something, that again, I never thought I would have to go through.

I do have some bold good news to share. After months of tests, and discussions, Justin and I have decided to try again, in the future. This is very happy and exciting. And I am beyond thankful to have a such and amazing husband and best friend in life that could still be on the same page as I am when it comes to something to tragic, complex, and uncertain and still somehow have the strength to be open and suportive and also willing to try again. This decision was VERY hard. While Im so happy to share this with everyone, I do ask a few things.

PLEASE

Understand all of the risk that comes with this choice. I wont get a single glimpse of peace or assurance during any future pregnancy until the prenatal testing is done at the end of the first trimester. This will be 3 very challenging months. Please understand that.

This is in NO way a "pregnancy announcement". I will not announce any pregnancy until we do have a clear bill of health as a result of the prenatal testing that wont be done until the end of the first trimester. Please do not ask me if Im pregnant. Because - If im not, It will just make me even more sad that I'm not. And if I am, it will just make me upset that I cant share it, and worry about the "what ifs" all over again.

Please. Let me come to you.


We will be more than happy to share good news. Eventually. In the meantime, we are thankful that we still have so many that support and love us, We have our love for each other, a bond that is stronger than ever, and the most perfect beautiful little angel baby watching over us.

Always.

The Results...

As it was explained before, Liam’s entire life has so far has been a mystery. Why did he stop breathing during his first day of life? Why he had such a high CRP for his entire life? Why did everything look and appear to be perfectly normal but yet we spent over a month in the NICU without any answers? Why was he having breathing spells after he turned two months? Why was he dismissed from the ER so easily the first time we took him in? Why did none of his specialists see any red flags? Why did he appear to so suddenly have pneumonia and be severely anemic? Why did his heart fail?

That last one hurts the most.. I have been waiting for some type of closure or explanation. Now that I have one, I’m not sure I feel any better. At least now I know what happened. Some parents of tragedies don’t even get that much.

Liam's autopsy results showed a diagnosis of Idiopathic Infantile Arterial Calcification (IIAC).

From Wikipedia

"Idiopathic Infantile Arterial Calcification (IIAC) also known as Arterial Calcification of Infancy, Generalised Infantile Arterial Calcification (GACI), Idiopathic Arterial Calcification of Infancy (IACI), Occlusive Infantile Arterial Calcification, Occlusive Infantile Arteriopathy is an extremely rare, usually fatal genetic disorder, caused by mutations in the ENPP1 gene in 75% of the subjects. The condition affects infants during the first 6 months of life. This condition is inherited as an autosomal recessive pattern. It is characterized by generalised calcification of the arterial internal elastic lamina, leading to rupture of the lamina and occlusive changes in the tunica intima with stenosis and decreased elasticity of the vessel wall. Most infants die of vaso-occlusive disease, especially of the coronary arteries."

Ill highlight the basics based on the extensive research I have done since learning of this disease.

There are less than 200 cases ever reported in the world. It causes calcification in your arteries. Calcification slowly grows and hardens the affected organs. This causes your heart and other organs to eventually overwork themselves to compensate for  the calcification until failure. Calcification can show up on some types of scans but is usually not noticed because of how hard it is to spot and the rareness of the disease (no one knows about it to even look for it specifically) This disorder only occurs when both the mother and father are carriers of the mutated gene/disorder. If you are a carrier of the mutation, you are 100% unaffected by it. Unless - You procreate with another carrier. Then you risk a 1 in 4 chance of your child having the disorder. Every time.

In these 200 cases, 85% of the patients were diagnosed under 6 months of age, postmortem, from an autopsy. Due to the difficulty of an early diagnosis and the lack of a treatment, there are only eleven long-term survivors (over 6 months of age) reported. However, There have been successful survival cases to go on to adulthood and some even life a normal healthy life. In cases that the disorder was present in other siblings, they were able to closely monitor and look for signs of the disorder in future pregnancies. However it is very hard to detect during because everything appears normal.  There's a chance you may be able to see calcification (if present) in an ultrasound, especially if you know it’s a genetic issue and you know what you are looking for. But it’s not 100% positive. Prenatal and postnatal treatment with low-dose, cyclical bisphosphonates, also called diphosphonate has been used to prevent or cure the calcification. There are so few of these cases it’s hard to prove long term survival rates.

My entire pregnancy was "perfect". At least until I went into labor, had excessive fluid, swelling, and Liam's heart rate was calmer than they'd like. There were no markers of Preeclampsia or the HELP disorder I was diagnosed with until after. No one could see anything wrong with Liam during the entire 65 days of his life. He was also, "perfect".

So. Now we "know" what happened. I do feel less guilt at the idea of it was something I did. I know, I know, everyone says that "it was nothing you did, nothing you could have done" but you absolutely cannot rid that recurring thought from your mind until you have some type of proof. Or at least I couldn’t. You just replay every second of every day repeatedly wondering “what if” So I will say that in that aspect, I do have peace. Even though I knew this before, I can say confidently now that we did do everything for our son. We did. We were at the NICU every single day at least once if not twice for 3-4 hours (or more) at a time. Pumped milk for all of his feedings, fed him, changed him, held him, loved him, comforted him. Everything we were supposed to do. When he came home we were nothing but positive and loving. We were happy to care for him. We switched off. We were a great team with such a promising future. We took pictures every day. We took him out to visit family, took him to the drive in movies, restaurants, outings, and so so so much more. I love everything that we did get to do with him and experience with him. Even the unexplainable feelings of love, accomplishment, and completeness. I would never trade a second of it for anything in the world. We were the great parents we strived to be. We did a good job. For that, I can feel proud.

It just doesn’t make me feel any better about the fact that it was US. That it was HIM. That it’s because JUSTIN and I found EACH OTHER, and that caused THIS. I had a lot of anger. ALOT of anger. A lot of resentment, confusion, jealousy and just bitterness. You’ve heard these words before but the amount of power that they had over me was unbearable. I still am not okay with it. But I refuse to suffer more for something that is so completely not my fault, not fair, and completely out of my hands. So have been trying to not act on any of it and seek peace.

Justin and I thankfully are rock solid. We are very open with each other and are helping each other. This may close the book of Liam to others, but it will always be open to us and those closest to us. We will remember him forever. He will be incorporated in to our family forever. Nothing can change that. We are also happy that we even got to experience this much of him. I like to believe that our souls have more than one cycle on this earth. I like to believe that he will be near me in other forms. I like to believe that even though his life with us was so short, we will be stronger and better for it, and that he enjoyed his short time with parents who filled his days with nothing but love, comfort, and kindness. There are even worse scenarios out there of tragedy to equally undeserving parents. Even though we hoped to have him longer, I am blessed to have had him and gotten to spend the 65 days with him that I did.