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Saturday, February 17, 2018

The People Behind the Scenes

I hear the words "super mom" quite often.  People wonder how I juggle work, Eli's bandage changes, preparing to leave for Minnesota for 4 months, the fundraising we have been doing, and basic every day stuff.  I post updates on Eli almost daily and those updates sometimes include pictures of the two of us or videos that I have taken of him or talk about appointments that I take him to.  That is what people see-mom does it all. 

But that is not the truth. Mom does not do it all.  Mom has a team of people who help her juggle it all.  That team includes FIVE home health care nurses who adore Eli and understand his condition as well as we do.  They change more diapers than we do and do more of his feedings than we do-because while mom and dad are at work-they are at home with Eli making sure he is fed, clean, happy, and his pain is under control.  Sometimes when I don't have to work, they even let me get an extra hour or two of sleep after Eli wakes up. They set up and almost always clean up after bandage changes which save us a hour out of our day.  They have seen us lose our ever-loving minds when our son is screaming, twisting his wrists or kicking his legs preventing us from bandaging him back up.  One of our nurses spends hours every week working the graveyard shift to cut bandages while the rest of us are tucked away in our bed and she was up all day with her own toddler. She used to attend to Eli's every hour or two wakings on the nights she would work but for the most part we just let him sleep in bed with us now.  Our nurses have gone to doctor appointments with me, have helped us clean up bloody vomit from our hands, sheets, and towels, and have sprayed poop out of Eli's clothes.  They sometimes drive me crazy-because I am a particular person about some things-but I know that feeling is very mutual between all of us.  Without their help and love for Eli our life would be far more difficult to manage! Part of me is dreading the thought of not having them to talk to or help me while we are in Minnesota. 

Beyond the help of our nurses, I have to toot my husband's horn.  He hates being on camera so I don't get to share pictures of him and Eli too often.  He works 40 hours a week, comes home two nights a week to do evening bandage changes with Eli (which take half the time that mine do because Eli isn't as attention seeking during bandage changes with dad nor is dad AS particular as me), and on the other days he does not have bandage changes he is remodeling our home after a 9 hour day at work.  On days like today, when mom is at work and dad is at home with no nurse he is making sure Eli is fed, takes a nap, changes his diapers and/or sits him on the potty if Eli requests it, and is still nailing down flooring in our living room to keep the remodeling project going forward. 

We have owned our house for 5 years now and have experienced one miscarriage, adoption of a kitten, one failed IVF, one successful IVF, 9 months of pregnancy, and 30 months of parenting a high needs medically fragile child in our home.  We have also experienced a septic tank back flowing into our basement, a new sewer line being improperly installed to then be reinstalled, the city storm sewer flooding our basement at least 10 times, installing four sump pump pits in our basement to keep the water out, our furnace and a/c going out on us requiring replacement, our dryer breaking numerous times requiring replacement, our dishwasher breaking on our son's birthday requiring replacement, I think I remember our microwave blowing up too which required replacement, tearing down three bedrooms, one bathroom, a living room, a dining room, a hallway, and a stairway to the studs due to having poor plastered walls, poor insulation, poor to no ventilation in areas of our home, and knob and tube wiring throughout the home, and have worked for the past 5 years to make our home safe, clean, and modern.

And when I say "we"-I really mean "he." I don't lift a finger when it comes to installing new appliances or tearing down walls or anything else that needs to be done. I just pick out what I want and usually my husband trusts my design judgment.   Most of the work done to our house has involved minimal contracting and a whole lot of labor from my husbands own hands.  He hears me complain a lot, about how much time it takes away from being involved in family activities and about the mess I can't stand living in at times or a sink full of dishes when I was working all weekend and he was home (working on the house of course-just not things that I would have done), but truthfully-I love the finished product when it is all done and I know deep down he wants to make our house as clean, organized, and safe for Eli in the end and he is just trying to do that as quick as he can.  Every year he uses his annual bonus that he works his tail off for-taking phone calls and emails on his days off and even on our vacations-to continuously improve our home. 

Beyond our home-my husband manages our bills.  After Eli was born, this was part of our life that I handed over to him.  I trust that as a banker he knows how to manage our finances and will let me know if I need to be aware of something important.  Occasionally I log into our bank account-like 10 times in the past two years. He does our own taxes every year and has been the one to set up our fundraising accounts and met with lawyers to make sure what we are doing is legal. He has been the one to get our power of attorney paperwork and living wills taken care of during this process of preparing for MN. 

And yet....he still participates in our community more than I do.  He is involved in numerous clubs and heavily involved with the Journeyman's Club where he has played a vital roll in the annual Easter Egg Hunt and Oktoberfest Parade the past several years since Eli was born. 

So if anyone deserves to be called "super" is these people.  The ones who are behind the scenes of every post about Eli and our life.  And if anyone is the worst at expressing these feelings to the people who are most deserving of this acknowledgement it is me. Sometimes, ....most of the time, I focus on what wasn't done the way I wanted it done or how I would have done things and I get agitated and snippy instead of expressing appreciation for the help and the hard work that goes into our son and our home.

We each share a piece in Eli's puzzle. Not one of us more than the other. We are a "super team" who strive our best to ensure Eli has a good quality of life that is filled with love and laughter and a feeling of safety and security.  We also keep each other balanced and without the roles that each of us play-I personally would not have the little bit of sanity that I do have or the time that I can devote to being the mother that I am.


Tuesday, January 2, 2018

New Year; New Page; New Journey

Happy New Year from Alex, Lindsay, and Eli-or better known as "Baby M" in the pregnancy and fertility world!
It's been a long time since I have shared anything on our blog...since September 16, 2016 to be exact. Time flies when you're having fun I guess.  If you can call parenting a toddler fun, not to mention a toddler with medical needs😉 Let do a little recap of our journey and then I will catch you all up to speed on our current happenings.

I started blogging in January 2014, at the start of our first fertility cycle to express my emotions and in hopes of helping other women not feel so alone.  My husband and I met in 2006.  We lost a daughter to stillbirth at 24 weeks on March 1st, 2008.  I had an early miscarriage the following year in September.  We fostered a 16 year old with Reactive Attachment Disorder in 2011.  2012 was super adventurous between being diagnosed with a rare genetic disorder, Homocystinuria (a 1 in 400,000 disease), having five emergency eye surgeries, graduating with my masters degree, getting married, and conceiving another baby.  On Martin Luther King Day in 2013, at 11 weeks our baby no longer had a beating heart and the following week I had a D&C.  Fast forward 9 more months and we had another miscarriage, a blighted ovum. 

Through all of our losses we were told a variety of different causes.  Our daughter was born with her cord wrapped around her neck so her death was considered to be cord strangulation.  The first miscarriage...well these things just happen.  Once I was diagnosed with Homocystinuria we were told I was at high risk of blood clots during pregnancy which leads to miscarriages and stillbirths.  This seemed like a better explanation to us...something we could treat at least. So when we fell pregnant at the end of 2012 I started Lovenox injections immediately to try to prevent blood clots and more heartbreak.  Unfortunately, until March 2013, we did not know that two of my chromosomes are fused together which will result in a 25% chance of having a child with Down Syndrome and a 25% chance of having a child with Trisomy 13.  Both of these medical issues can be fatal during pregnancy or after birth.  Our last two miscarriages both had Down Syndrome.

The most logical plan of action at that point was "treat" the things we knew were "wrong" with me.  Blood thinners for pregnancy-check. But the chromosome issue?  That's when we invested in in-vitro fertilization with pre-implantation genetic screening.  I hated the idea of "choosing" a baby based on rather or not they were healthy.  I always thought that saying when people ask you what do you hope you are having when your pregnant-"it doesn't matter as long as it's healthy"- is kinda a crock of crap. I believe as a parent you love what you are given.  Boy, girl, extra/missing fingers and toes, chromosome or genetic conditions that cause various organ problems....I am pretty sure that when it is your own child you can't help but to love them.  Of course nobody wishes or hopes for a medically fragile child.  And in our case it felt as if we being selfish by trying to have a baby that we knew for a fact would likely either die during my pregnancy or would have severe medical problems.  It didn't make sense for us to keep putting ourselves through heart ache or to bring a child into the world that would have to fight for its life. 

God, of course, doesn't always have the same plan that you do.  Sometimes that is a hard thing to accept.  Our first IVF cycle failed.  We had 12 eggs collected during my non-medicated extremely painful egg retrieval, only 7 of those were mature enough to fertilize, and only four continued to grow long enough to biopsy and test for chromosome abnormalities.  Among those four, we had three with confirmed chromosome issues-only one of which was related to my fused chromosomes.  The fourth embryo had an unconfirmed result so we blindly decided to give it some faith and prayed for the best.  After our negative pregnancy test we were left with $20,000 deeper in debt and questioning what was next for us. 

After a long and bumpy ride we ended up pregnant from my sister's donor eggs 9 months later.  We took every precaution under the sun to ensure our baby would be "healthy" and our pregnancy would last another 9 months.  Lovenox injections daily to thin my blood. Progesterone shots daily for the first several weeks to keep my level up. Metformin daily for my insulin resistance.  Synthroid daily for my slightly elevated thyroid hormone. Aspirin daily for extra blood thinning. Intralipid infusions every 2 weeks for 14 weeks to treat any potential auto-immune problems. And a whole slew of vitamins specific for my Homocystinuria. 

I was the happiest I had ever been.  I was pregnant with our Rainbow Baby.  I was anxious, yes.  But I really enjoyed every moment of being pregnant and was obsessed with hearing "Baby M's" heart beat and watching him grow.  Despite the risk of growth restriction due to having a Velementous Cord Insertion in the placenta, which occurs in only 1% of pregnancies of course, our son was born a near 8 lbs on August 8th, 2015.  "Baby M" was named Eli Francis Monnier and was immediately wisked away to the NICU due to having "a problem with his skin." 

Recessive Dystrophic Epidermolysis Bullosa. RDEB for short.  It is a rare, incurable, progressive condition that affects the largest organ of the body, the organ that protects the rest of the body from bacteria, regulates the body's temperature and moisture levels, and contains receptors for recognizing pain.  It is caused by two mutations in the Collagen VII gene and results in body being unable to produce the protein that "glues" the layers of skin together.  Any slight trauma or friction can tear the skin off or shift it enough that a large blister forms. This protein is also vital to the mucosal tissues which are found in the eyes, nose, mouth, esophagus, trachea, lungs, stomach, intestines, ureter, urethra, and bladder. Life expectancy with RDEB is around 25 years or less. Cause of death is typically infection, skin cancer, or heart failure.
I have questions that verse so many times.  I would be lying if I said I haven't.  But I have say two and a half years later that God has given us a child who is brilliant, funny, loving, strong-willed, and puts a smile on our faces all the time. 

It has not been an easy life so far, and I know our future will have it's own hurdles to jump.  We have treated bacteria infected wounds every day, have held our son while screaming in excruciating pain from bowel movements that rip apart his rectum despite his stool being soft, have applied antibiotic cream to our son's eyes from multiple corneal abrasions, and have held handfuls of blood from blisters rupturing in our son's esophagus.  We have gone to work more days than I can count with only two hours of sporadic sleep.  We have battled feeding issues and have had to learn how to care for a gtube.  We have purchased around 100 different creams/gels/lotions hoping one of them will be the miracle that heal a wound overnight.  And we administer around 10 medications a day to keep our son as healthy as we can and treat his pain. 

Every day we pray for a cure. We pray for hope. We pray for guidance. 

That prayer has led us to our next journey.  Eli has been approved for a bone marrow transplant at the University of Minnesota. It isn't a cure.  But it is the only systemic treatment option for severe cases of Epidermolysis Bullosa. Eli is considered to have severe generalized EB, meaning both of his gene mutations have been seen in other "severe" cases and his condition will only progressively get worse to the point where he will have no areas that have been untouched by blisters.  His fingers and toes will fuse together in the future.  His toes are already fusing due to the recurrent blistering and scaring that has occurred so far in his short life.  Internal issues will also progressively worsen as we have already seen over the past 8 months. As a systemic treatment, the goal of the bone marrow transplant is to help Eli's body create enough Collegen VII that the condition will not be AS SEVERE.  It could help him produce enough of the protein that he should not blister as often or as large and should heal faster.  It should give his skin enough strength that it shouldn't rip off or blister with every minor fall or accident (example-a ball hit his chin the other week when tossing it back and forth with me and it tore the skin off instantly). With these potential benefits come very scary potential risks which includes death related to infection and organ failure due to killing off his own bone marrow (immune system) so he can accept someone else's. 

That "someone else's" is his father's. Eli's dad will be his bone marrow donor.  After discussing it with the doctors and geneticist in Minnesota this was the most logical choice.  The current protocol for transplant is to use a half-matched related donor, which is a sibling or parent.  Eli has no siblings and I am technically his my own genetics are terrible so even if I were his biological mother I would not be able to be his donor.  That leaves my husband and my sister.  Both are in general good health and have no crazy medical issues.  However, this is a time consuming process and my sister has her own child to take care of and life responsibilities including a demanding work schedule.  Part of the protocol, using a related donor, allows for cell boosts up to five times post transplant which has been proving to be more successful than previous protocols where full matched non-related or 8/10 related matches were used but no additional cell boosts were given. 

Despite the scary negative side effects that can occur, there is a lot that gives us hope.  This past year they started testing for antibodies against the donor.  This gives them an idea of how likely the patient is to reject the transplant or develop graft vs host disease.  With this new knowledge, they now know that if a patient has antibodies against their donor they either need to select a different donor or get rid of the antibodies.  Eli DOES have antibodies against his dad.  They are a low enough level that the doctors are comfortable still using his dad as his donor but we will retest them the week before we go to MN to see if we need to get rid of the antibodies as his level can fluctuate.  Another thing that gives us hope is that even older children who have had more years of "damage" from EB are having successful transplants over this past year.  Eli is overall in good health and his labs are always excellent which makes us believe his body will be able to withstand the difficulties of the transplant process.  He has a strong personality also and is a little fighter. 

So in this new year I will be preparing to "move" to Minnesota from March-August (potentially longer) to be with Eli while he receives his transplant.  We will continue to share our journey on my personal facebook page and our family page which has been renamed from Alex and Lindsay's Baby Quest to "Rainbow Baby; Butterfly Boy" and can be found at .  Our new page name is more fitting to our current journey as we are 100% focused on Eli and 0% focused on extending our family at this time.  If you aren't a follower on our page yet, join us for our 2018 Journey through Transplant and become another prayer warrior and supporter in Eli's Fight Against Epidermolysis Bullosa!

Friday, September 16, 2016

Exceeded Expectations: A Recap of our Journey

I don't get to write much these days, being a parent and all.  My time is occupied focusing on the here and now and rarely do I have a moment to just sit and reflect on how or why I'm feeling the way I am.  I used to have all the time in the world to do that! Becoming a parent really changes things. It changes life.  It changes what is important to us and what is not.  It changes what we spend our time and energy on. And for me, that's Eli now. I am the mom of a special little boy who requires all of my love, attention, and energy.

But while I have a moment (or several moments over the course of the last two weeks), I want to share with you a recap of our journey to parenthood and what things have been like for us since the birth of our precious Eli.

Those of you who have followed along our journey, you know life has never been on the easy side for my husband and I.  Over the last several months I have been putting videos together (numerous videos because IMovie and You Tube have a 15 minute limit on home-made videos and, well-there was no way I could fit our life in a 15 minute video!).  These videos share the most intimate details of our journey.  Some video's are graphic because I just don't sugar coat anything.  This is real life.  This is what our life has looked like.  It's messy.  It's heartbreaking.  It's hopeful.  It's loving.  It's beautiful.

Someone recently asked me if I was going to write a blog about how becoming a parent has changed me spiritually.  My answer was "no, because I still feel I have a long way to go and sometimes I am still angry at God."  Again-I don't sugar coat. But what I will share about where I have been spiritually and where I am now is that I do believe when I am down on my knees screaming at God because my heart is in so much pain that he does hear me.  He doesn't always give me the answers that I want to hear-but somehow I have learned to just trust the journey (most of the time) he has been taking me on.  The songs in every one of these videos are Christian songs.  And something that really stood out to me when I was making these videos is that even these musicians who wrote and sing these songs have been broken by tragedy and glued back together by their faith.  So I try to remember that having faith in God doesn't mean life won't be hard, or even unbearable. It's knowing that he will always pick you back up and help you walk through the misery until some sun starts shining again.


Our First 4 Pregnancies:
           Songs: I will Carry You-Selah (Perfect for describing my feelings of carrying Riley until she was stillborn. She knew nothing but the love I gave her.) Thy Will-Hilary Scott (Perfect for expressing how much it hurt to experience miscarriages after already losing a baby to stillbirth but how we have to trust that God knows more than we do and his plan for us is still good.)

Our IVF Cycles:
           Songs: Hope in Front of Me-Danny Gokey (Resorting to expensive IVF procedures were not what we planned but it's where God led us and so many people started rooting for us and helping us financially and spiritually through this part of our journey which gave us Hope to keep moving forward.) I'm Letting Go-Francesca Battistelli (Even more so, we never thought we would build a family using donor eggs but it turns out it was God's plan and we just had to let go and go with it.)

Our 5th Pregnancy:
           Songs: What Faith Can Do-Kutless (It would have been easy to give up after 4 consecutive losses but we had faith that we would become parents and God would allow me to carry our child to birth. Miracles-Audio Adrenaline (Making it to 25 weeks and through the second trimester was a huge miracle! At 20 weeks we were informed our son's umbilical cord was not inserted into the placenta correctly which happens in 3% of all pregnancies and can lead to stillbirth-but God had his hands on this baby boy!) I Get to be The One-JJ Heller (Going into the third trimester was the greatest feeling on Earth.  We were so happy that we were blessed with this child who loved to kick and wiggle inside of me and couldn't wait until we could hold him!)

Eli's Birth and NICU Story:
            Songs: Guardian Angel-Leah West (This song brought me to tears every time I would hear it because of the immense love I felt for our son. As his mother, I want him to know nothing but love and protection from me.) Holding You-Matt Hammitt (Terrified doesn't even described the emotions we felt after our son was born with a life-threatening skin disease. We had to believe that God was not only holding us as we cried out for healing but holding our son as he battled intense pain from missing and blistered skin.) Blessings-Laura Story (So many emotions wrapped up into one song from doubt, anger, and acceptance of the trials we were facing with our new son.)

Eli Month ONE-FIVE:
           Songs: All of Me-Matt Hammitt (Having a medically fragile child with a short life-expectancy was not suppose to be the ending of our story.  It was hard to push the fear of losing a living baby to the side, but our son deserved every bit of love we had in our hearts for him and he was worth every bit of our love too.) In My Arms-Plumb (We couldn't take away our son's disease, the pain it causes him, the things it prevents him from doing, but I want him to always feel safe in our arms and to know he is safe in the arms of Jesus too.)  Beautiful Offering-Big Daddy Weave (I don't want our life to just be broken.  I want our life to be a testament of God's love and want to be examples of how he carries us through the broken places when we can't carry ourselves.)

Eli Month SIX-NINE:
           Songs: Trust in You-Lauren Daigle (When Eli's skin is breaking down and we get angry that God would cause a child so much pain, I try so hard to just trust him-that there is a purpose for this pain and that God will use this for the good somehow.) Love Heals Your Heart-Third Day (EB is more than heart breaking.  It makes us angry and causes us to feel powerless when we watch our child in pain.  But Eli's smile and laughter are the greatest joys we could ever feel and strip the anger out of our hearts by reminding us how much we love this little boy.) Mended-Matthew West (It has been so important for me to remember that when Eli gets new wounds, God isn't finished yet with his story.  Just because our miracle healing hasn't happened yet-it could still happen.  Some weeks he looks really good and we have to focus on those weeks where his skin in mended and not wounded.)

           Songs: Beautiful, Beautiful-Francesca Battistelli (Eli makes our life beautiful, even through the clouds and rain that we feel due to his skin disease. I'm not sure why God entrusted us with such a fragile but amazing little boy.)  My Story-Big Daddy Weave (We met so many incredible children and adults with EB along with their families who battle this disease with them when we went to Texas in July for the EB Patient Care Conference. When I heard this song I couldn't help but to think about the story that these children and families have to tell.  They are stories of love, hope, and strength that can only come from God.) Do Life Big-Jaime Grace (Babies only turn ONE once, right?!? So do it big, especially when you have no idea how many birthdays you will get to celebrate with your child.) My Destiny-Katharine McPhee (I've always dreamed of being a mother, and I couldn't imagine my life without Eli. It was a long road to finally get to him and my husband never left my side no matter how hard it got for us. They are my destiny.)

A little over a year ago I wrote a blog on our Shattered Expectations after Eli was born. You can read it here: . In this post I talked a lot about how we were expecting a healthy baby after such a great pregnancy and were shocked, heart-broken, and terrified when our son was born with a life-threatening skin disease. We saw pictures and read stories about how terrible this disease is and assumed our son would be in CONSTANT pain, every minute of his life.  We assumed he would never be able to interact with us or experience joyful moments with us.  We assumed he would never walk and would be bullied because of the way he looks and smells (wounds don't smell pretty).  I also wrote about my relationship with my sister and how I had hoped the birth of Eli was going to bring us closer together but it only tore us further apart.

Well, over a year later I can say that our shattered expectations have now been exceeded.  First of all, as you can see in the videos, Eli is not in CONSTANT pain.  Does he have pain-yes!! Does it sometimes make us scream at God-absolutely! But we also praise God for the moments of laughter and that adorable, contagious smile of his! Our son is so funny and so smart.  He learns things very quickly and he is exceptionally social.  I have been humbled by people who are kind to us in public and don't ask rude questions about his bandages and can just tell that we are loving parents to an incredible brave and strong little boy.  Eli has not needed a g-tube, even when we have wanted one out of those nights every couple of months where he screams because he is hungry but can't eat due to his mouth or throat having painful blisters.  He is a big boy! Weighing in the 85th-95th percentile since he was 4 months old.  He is determined, which makes us believe that although he hates it when we work on crawling he will learn to walk because he loves working on standing so much.  And about my sister-she is so happy with her new boyfriend who has been 100% supportive of her choice to donate her eggs to us unlike her previous boyfriend and daughter's father.  This has made everything so much better between us because she doesn't have someone telling her she made a mistake.  She also sees the relationship between me and Eli and sees that it is truly the relationship between a mommy and son and knows how much love I have for him and he has for me.  I have not brought up wanting to share with Eli that he came from my sister's eggs anymore, because now that he is here and he is completely mine-I don't know that it's even important to me. My sister has never wanted us to share that information with our kids and that's really okay with me now.  I've always referred to her as "Aunt Ashy" to Eli.  It took him awhile to warm up to her....between 3-5 months old Eli would scream every time she looked at him but now, for the most part, he is happy and excited when we visit his auntie.  And the relationship between Eli and my sister's daughter Raegan is incredible! My niece is a little mother hen to him. She is so gentle and reminds anyone who touches him how to hold him so they don't hurt him.  He absolutely adores his cousin Raegan too! The cutest thing was when she had my mom print off pictures of Eli so she could take them into school and show her friends! I told my sister that she will probably ask to take Eli in for Show-and-Tell so she can tell everything about her cousin with special skin! Their relationship truly makes my heart melt!

The next 6-9 months are going to be crucial in our future family planning.  We are fortunate to be the second EB family to be getting a microsilk bathtub for Eli which is apart of a 2 phase, $20,000 bathroom remodel turning our existing bathroom into a bandage changing bathroom paid for by the Ohio Home Care Waiver funds we recently discovered we had available to us and learned we could use on home modifications to meet our son's medical needs.  This tub is supposed to oxygenate the skin, improving wound healing time, reducing scarring and pain, and eliminating bacteria infections.  We are so excited to see how this tub works for Eli.  If we do not see good results we will be considering a Bone Marrow Transplant or other clinical trials that may be available to him at that time.  Currently none of these trials are a cure to EB.  They may slow down the progression of his disease any may help heal his chronic wounds but the cure to EB is yet to be found.  Researchers are working on Gene-Editing which is the most promising treatment on the horizon but likely will not be available for another 2-4 years.  Rather or not we feel it necessary to travel out of state for any of the clinical trials will determine our time frame for considering another child and the route we may go about doing that. There are many discussions to be had, logistics and finances to figure out, and options to consider.  Just know that our journey is not complete!

Much Love, 
The Monnier's 

Thursday, June 30, 2016

I was a FOOL

This blog post has been on my mind and heart for awhile now. I just haven't had the time to sit down and type all these thoughts out, or at least when I do have time I get distracted by a million other things I can do.   I think you all know by now I don't sugar coat or bullshit much of anything. So here goes honesty.

Before I had Eli I remember so many times wishing, hoping, praying, even begging to be a "real" mom. You know....with a child I can actually hold, cuddle, kiss, rock and sing to sleep, teach and watch grow and learn to do new things every day.  I thought being a parent would be the greatest thing in the world.  I thought it would come naturally and easy to me.  Children have flocked to me my entire life, since I was a child myself!

During my years of trying to conceive and losing babies, I would get so angry at other parents who "complained" about their children or their role as a parent. I felt like they were ungrateful. I felt like they just didn't know how to handle their children or their own emotions. And what pissed me off the most was when I would hear things like "you just wait until you have kids" because God damnit I had kids and they died!!! So by golly when I have living children I will CHERISH every single time they wake me up at night, every single moment I have with them, and every single responsibility that comes with being a parent. I WILL NOT get frustrated at my child because I struggled through years of heartache to have my child unlike the person telling me that I WILL get frustrated too. I WILL NEVER scream at my child or get so anxious that I feel like running away for a few hours because I will want to spend EVERY SINGLE MINUTE OF MY LIFE with my child because it has hurt way to bad to have children that I can't spend it with at all.

Wow. Was I a complete and utter fool or what?! Honestly, 50% of my time as a parent has been spent feeling frustrated and defeated. 90% of my time is spent feeling exhausted. I HATE waking up constantly at night to a screaming, crying baby that, at times, we can't console because his pain is too much for him.  90% of the time I think there is no way I want another child-and I used to want 3 or 4. I have now become that annoying, ungrateful mother who questions why anyone would want children-out of complete exhaustion, and the fact that I have never had a normal pregnancy or parenting experience and have no idea how anyone ever does.

Then there is that other 50% of the time when I am in complete awe of my child. The things he learns to do despite his struggles. The strength he has to face each and every day. His smiles. His laughter. The way his grabs my face to plant a kiss on me or pulls me close to him for a hug. The way he interacts with other people and loves to be around other children. There are those very very VERY rare nights when he sleeps most of the night and I am HAPPY to get up with him to feed him.  There is that 10% of the time when I think he deserves to be a big brother one day and we would be doing him an injustice if we didn't find a way to have a sibling for him.

But then again, there have been times when I feel like the worst mother on the face of this earth because I yell at Eli to stop crying when my anxiety is through the freaking roof after a 15 hour work day or the night before a 15 hour work day. I know it's not even his fault. After I yell I don't feel the least bit better. I feel ONE MILLION times worse. It really isn't him I'm angry at when I yell. I am angry at his disease. I am angry that as his MOTHER I can't help him. I can't take away his pain. I can't cure his disease. I can't rationalize with a baby to make him understand any of it. I wish I didn't have a child with special needs. But I can't even begin to wrap my head around not having him as a son either. I would take everything we deal with now over burying one more child-a child that I have held, and rocked, and sang to, and kissed, and taught how to do new things that we never thought he would be able to do when he was born.

I would go to the end of the earth for my son, so when I feel burdened by him and his 10,000 needs-I hate it. And I can guarantee that you hate when you feel that way too. Because we are humans. We have emotions. We feel like we need to be SuperMom ALL.THE.TIME. And when we aren't, because we just can't, because we don't have one ounce of energy left in us, we feel like bad mothers. And that feeling right there-that is what makes us a DAMN GOOD MOTHER. It is hard to remember that in the midst of all the crisis around us. But it is the truest thing you will ever hear.

To anyone who is still in the midst of grief from trying to concieve and/or pregnancy loss, please know that the complaining mother is not ungrateful. She is everything but ungrateful. She loves her children with all her heart. She is just tired. She is exhausted. Motherhood is the single hardest job in this world. It is so much harder than anyone ever thinks it will be. And is a blessing. One that we all know can be ripped away from us in an instant. Because, really, we have either experienced the loss of a child ourselves or we know someone who has. And that makes us cherish our children so much. But it doesn't make the hard days any less hard.  I was such a fool for ever believing I would never understand these words. But I do. I truly understand. 

Friday, April 1, 2016

A New Adventure for Mommy

Life can be so stressful as a new mom. Okay-life can just be stressful! We are all trying to juggle so many responsibilities-working full time, going to school to further our degree's, being a wife or husband, building a family or taking care of our kids, sports practises, doctor appointments, you name it.  It can be hard to ever find time to take care of ourselves when we are constantly worrying that everyone else in our home is being taken care of.

I'm going to share a recap of my life with you:

Growing up I was always the skinny girl. People even thought I was anorexic. But TRUST ME! I loved to eat and I NEVER made myself starve or throw up! I had finally gotten myself to a healthy weight of 120lbs my senior year but two weeks before graduating high school I dropped down to 100lbs.  We were told I was in kidney failure by my family doctor. 

I saw a kidney specialist and he wanted me to monitor a few levels in my urine every 6 months.  I gained my freshman 15 without any problems at all. And my kidney issue resolved on its on.

I met my husband when I was 19. Moved away and transferred colleges the same year. Put on my sophomore 15. Is there such a thing?!?

At 20 years old I got pregnant. Lost 10 lbs during my pregnancy. Gained 5lbs back the week I found out she had died and I would be giving birth to our stillborn daughter.

At 21 years old I graduated college and started my first "real" job as a casemanager at a foster care agency.  I was diagnosed with high cholesterol when I did my life insurance screening. At the time I weighed 125lbs.

I spent several years traveling from home to home, county to county as a case manager and home-based therapist. So lunch consisted of fried fast food.  So not good. I gained 20 lbs during those four years of eating in my car. Oh an not to mention I have a miscarriage when I was 22 so I found comfort in unhealthy food.

At 24 years old my husband and I got engaged. We also became foster parents.  To a 16 year old girl! about stressful. But I had a temporary work-out partner to get me wedding dress ready and lost several inches and 5lbs from doing the Curves circuit. 

At 25 years old the lenses in my eyes detached. I had 5 eye surgeries within one year. I was diagnosed with a rare metabolic syndrome called Homocystinuria. I haven't been able to metablize protein since I was born. If I continue to eat moderate-large amounts of protein I could die.  I had to restrict my protein intake to 20grams a day-which is nothing really.  I basically could eat vegatables, but I craved carbs the most because they were the most filling. I was able to maintain my weight at 140lbs by continuing Curves up until we got married.

Once we were hitched we started to work on making a family.  5 months later we were thrilled to be expecting, but we were shocked and heartbroken when our fourth ultrasound at 11 weeks showed there was no longer a heartbeat. Our pregnancy ended with a D&C.  I had gained about 5 lbs during my pregnancy and did not lose any of it after the miscarriage.

Due to my depression and the stress of fertility and genetic testing, as well as the addition of some medications to treat issues that we thought were problematic for me, I gained another 5lbs before getting pregnant again 7 months later. 

Once again this pregnancy ended in a miscarriage/D&C and more depression and stress, adding yet again another 5lbs.

So I gained 15 lbs in one year.  You do the math to calucate my weight by the end of 2013.

The start of 2014 was a hopeful time for us, because we were recipients of a Baby Quest Foundation grant and were able to start IVF with pre-implantation genetic testing.  All the hormones that were injected into me caused me to gain another 5 lbs. When the procedure failed, there came along another 5lbs.

By the end of 2014 I had gone through so much testing and was taking so much medication to try to create a happy home for a baby that I was the heaviest I have ever been in my life. I was not worried about working out to lose the weight. I was worried about working as much as I could so we could afford our last effort of me carrying our child-our egg donor cycle.  Throughout the stressful months of preparing for our last cycle, I just kept gaining weight.

By the time we concieved our son I was at a hefty 178lbs. I was bloated from Prednisone and Progesterone. I was terrified that I would end up well over 200lbs by the end of my pregnancy and wouldn't be able to lose the weight.

Throughout my pregnancy with my son I only gained 14 lbs, THANK YOU GOD! Almost 8lbs of that was all Eli.  After I had Eli, I lost my baby weight almost immediately.  He was in the NICU for three weeks so the combination of worrying about him and not having time to eat because I was taking care of him caused me to get down to 165lbs before he was discharged home.

Pumping was a God send in the weight loss category, even though I really hated doing it.  Before I went back to work when Eli was 9 weeks old I got down to 157lbs. This was the skinniest I had looked for two years and I felt pretty good about my body. 

I was able to maintain this weight up until Christmas, when shit hit the fan in our house.  Due to our son having a rare congenital skin disease, which not only affects his visable skin but also his internal mucosal tissues-life can be really stressful for us.  Around Christmas Eli's skin started getting really bad again, huge blisters on his feet and extremities. He started having issues with eating because his mouth and throat were so raw and sore from blistering. We discovered he had a bacteria infection on his skin which was causing it to be unable to heal as quickly as it usually does.  Once his skin finally started improving, he came down with RSV.  After he got rid of the RSV he was doing really well for awhile and then contracted pink eye.  His skin does good some weeks and bad other weeks. We get one area looking pretty good and then another area gets destroyed.

Right around the same time that Eli started struggling with all these illnesses, I changed jobs in hopes of having a better schedule for my family.  I was working Monday-Thursday from 2p-10:30p and Fridays from 12p-8:30p at a hospital an hour from where we lived. I had been there for almost 3 years and they were like family, but I had NO time for myself and the only time I had with Eli and my husband was on weekends.  During the week I was doing Eli's 3 hour bandage change before going into work so my "Eli time" was spent listening to him scream bloody murder as I tortured the poor kid for 3 hours straight. It was the most unenjoyable "mommy moments" that I could have possibly had.  I needed days off during the week to be able to go to my own doctor appointments and to feel like I had more time with our son.  I transferred to another hospital that was even further from our house so that I could have two week days off.  But the transition has been difficult.  I went from feeling like I was apart of a family at my old hospital to feeling like I had little to no emotional support when Eli was really struggling.  I went from 50 hours a week (40 hrs work time 10 hours drive time) to 48 hours a week (36 hrs work time 12 hours drive time).  I went from getting home around Midnight 4 nights a week and around 10pm 1 night a week to getting home around 2am 3 nights a week and around Midnight 1 night a week. The ONLY benefit my current schedule has had for me is having two weekdays off (Monday & Wednesday) which are followed by two 12 hour shifts and preceded by getting home at 2am the nights before.  The stress of this transition and Eli's downward spiral made me gain back 12 lbs that I had previously lost during my maternity leave.

On my days off I can do so much more than just bandage changes now.  I can take Eli to doctor appointments, go to my own doctor appointments, see my family for dinner, run errands that need to be done, do some house cleaning, schedule in-home meetings with Eli's PT/OT and case managers, and my favorite-participate in a work out class.  I love having these days off and would love it even more if I only had to work part-time out of the home so I could do even more with Eli as he gets older.

Because I know with Eli's skin disease, life can be very limited-I want to spend as much enjoyable time with him that I can.  I don't want to waste away my days with my son doing bandage changes and listening to him scream and cry the whole time.  I want to hear his laughter, see his smile, and make positive memories with him as long as I can.  That's why when I was approached by my first grade teacher's daughter about joining her It Works Global team I decided now was as good of a time as any to take a big leap of faith and just GO FOR IT!

It Works Global is a world-wide company started by two christians, a husband and wife, who wanted to get out of debt and have financial freedom. They now make over $500 million dollars in sales a year! They believe in giving back to their distributors and have an amazing commission plan and bonuses that cannot compare to any other direct sales company! They make natural, plant based products to help with weight loss, muscle building, nutritional support, skin care, and overall wellness.

When I joined on February 29th, the company was offering a $1000 bonus to anyone who signed up and advanced to the Ruby level of sales by the end of their second month.  Currently they are offering a $500 bonus to anyone who joins as a distributor by April 30th and advances to the Ruby level of sales by the end of their second month with the company.  At this level of sales, the average monthly income is around $600.  I know that would pay my student loan payment for the month and given me some left over for gas.  There are so many of my team members above me who are making $2000 a month after just a few months with the company, and some that are making $6000 a month after just a year with the company. And what is even more amazing, is that some people are making $10,000 a month after less than two years! These people all also just earned bonuses this month ranging from $20,000-$100,000! It is insane how much financial freedom this company can bring to so many lives. 

I would like to add FOUR new people to my team THIS MONTH! I want to help these people earn an extra $600 a month and a $500 bonus! I want to help these people to be able to afford their house payments, get out of credit card debt, pay for fertility treatments, have money for diapers and formula, or be able to splurge a little on that haircut they have been wanting to get, or that workout class they couldn't manage to pay for before, or that family vacation they have been dying to go on!

I also would like to add TEN new customers to my pipeline THIS MONTH! I want to help these people achieve their health and fitness goals-whether it is to lose weight or to feel overall better inside and out!

If you are interested in joining my team or becoming a customer-please visit my website:
If these are products you would like to use and/or sell, please send me a message ASAP! I would love to get you started today on your very own IT WORKS ADVENTURE! I promise this will change your life for the better! You will TRIPLE your start-up investment in no time at all and be on your way to earning product credits, weekly and monthly comissions, and bonuses that will blow your socks off!
I am looking forward to talking with you soon! Have a fabulous weekend. And remember, your dreams are NEVER too big! With a team like mine behind you, anything is possible!


Tuesday, March 1, 2016

Does having a Rainbow Baby Change the Face of Grief?

I knew last night that I wanted to share my thoughts on this subject. Does having a rainbow baby change the way grief looks and feels? Honestly, I think you will get different answers from different people. I think it depends on how much time has passed, the circumstances surrounding the death of the baby (miscarriage, stillbirth, infant death, child death), and how much support the person has in their life.  

What I thought I was going to share today, on our daughter's 8th birthday in Heaven, changed very quickly after my day got started.  I really thought I was okay.  I thought having Eli in my life now has filled a void that Riley left when she grew her wings 8 years ago.  I thought my heart was healed and that I was moving forward without the constant reminder that my first baby died and her body lives in a grave 20 minutes from my house at the foot of my grandmothers grave.

I did not expect to be triggered so deeply and so quickly today.  But when my supervisor walked into the office and was ranting about the strong smell of a woman's "dead baby" who had been in the room with the woman for over 24 hours-I was triggered-deeply, and quickly.  How dare someone talk so openly and rudely about how THEY were uncomfortable when THEY went into a woman's room who had just lost her baby! How dare someone make judgement about how long a woman should be able to spend with her "dead baby"! How dare someone someone be so ignorant to this woman's grief! I instantly felt like I could explode when I heard two supervisors making comments back and forth about how the woman shouldn't have been allowed to keep the baby in the room because it smelled so bad.  All I could think about was the FIVE hours I was given with Riley, 8 years ago, today. FIVE HOURS!!!! I had to say good-bye forever after FIVE SHORT HOURS. So you know what-good for the medical community for realizing that FIVE hours is not long enough for a woman to hold her child that she will never get to hold again! Good for the nurses and doctors for allowing this woman a whole day with her baby-because this day is the only day she will ever have. This day is the only day she will be able to make memories with her baby-and they won't even be good memories. But they will be memories.  Even a day is not long enough. Every woman who has ever lost a baby will tell you that the moment they think they are ready to part ways with their baby, they want to run down the halls after the nurse who is wheeling their baby to the morgue and get their baby back.  I tried to bite my tongue but it just came out-I told the supervisors that their conversation was offensive.  I told them about losing my daughter 8 years ago today and how little time I was given and how no amount of time is ever enough when you lose a baby. Regardless of the smell-a woman wants as much time as she can have with her child. 

I went to the bathroom and cried.....and thought DAMNIT!! I thought I was okay today. I thought I could get through the day without any tears.  I thought I could just look at pictures and watch videos of Eli and be reminded of how much love he has brought to my life and how I don't feel empty anymore.  

I guess the truth is, I will always grieve for Riley.  I will always remember the day I found out her heart was no longer beating and the days that followed in the hospital waiting to give birth to her. I was always remember 5:15am when I delivered her into my own hands underneath the sheets with no doctor or nurse around. I will always remember the five hours I spent holding her.  I will always remember that she was my first child.  I will always remember that she took a big piece of my heart with her when she left me.  

Does having a rainbow baby change the face of grief?? It does a little. But there will always be triggers that take you right back to that place of the worst pain you've ever felt. It never fully goes away.  This is the first year since Riley died that I have had another baby to hold-and it is comforting to know I am no longer childless.  For me, I had to wait so long before God blessed me with another child that I don't have any feelings of guilt about "replacing" her like some women feel when they are quickly blessed with their Rainbow babies (I used quotations because no one actually replaces their deceased child with another one-but as woman we fear our deceased child will feel like that's what we are doing).  When we were starting our egg donor cycle with my sister, our family was worried that I would never be able to look at our baby as MY baby and would always feel resentment towards him or her since my eggs were not being used to create the baby. But that is far far far from the truth-Eli is every bit of MY child as it is my husbands and he is by no means my sister's child.  I would kill someone if they tried to say he wasn't my child or was her child.  I AM his mother and we have a bond that is so incredibly strong.  He has often made me forget about the broken road that led to his creation.....he has allowed me to pour all this love that I've been wanting to share with our children into him. He has changed the face of grief for me-but I will always have triggers that take me back to that hurtful place and time.

Later this afternoon my supervisor came to me and apologized for being insensative and inappropriate with her choice of words today.  She reminded me that perhaps I wasn't supposed to be just okay today and that I was supposed to remember how bad I hurt 8 years ago so she and others who were in the room with us could be educated on grief and how to be more supportive to others.  Maybe she is right.  Maybe my job will never be done as an advocate for women who have experienced the worst grief someone could possible feel.

So I leave you with this little reminder-women will always grieve for the child she has lost.  A new baby does not make her forget about the one who died.  She did not replace her deceased child.  She has not forgotten the most raw, painful days of her entire life.  There will always be a void-maybe small but maybe big.  Your words can trigger feelings of anger and sadness that the woman has not felt in months or years.  Yes-she loves her rainbow baby more than anything else in the world. But do not think for one second that she does not remember her angel's birthday. If you are a close friend or family member-remember her child too-it means the world to her to know other people have not forgotten the precious soul that is no longer with her on this Earth but always with her in her heart. 

Friday, January 29, 2016

It's Time to Make Time...for Me.

Eli, or Baby "M", as the world affectionately called him for 9 months, is almost 6 months old.  Some days it feels like an eternity since I brought our sweet son into the world and other days I wonder how the time has gone so fast.  After his birth my husband and I were sent through a whirlwind of emotions as we learned about our son's skin disease and how to care for him.  I spent every day at Eli's side while he was in the NICU for three weeks, working with him on eating, learning how to bandage him, talking to all kinds of specialists, and just holding and cuddling him to show him how much I loved him.  Most days I did this alone while my husband was working so we could still pay our bills.  I slept on a couch every night in Eli's room and rarely allowed the nurses to feed him or change him in the middle of the night.  Nights became short and days became long.  I lived and breathed our son.  He was my number one priority.  That Heparin I was supposed to take for 6 weeks post-partum due to my risk of blood clots-didn't take it.  Never remembered to. The vitamins I had been taking for the last couple of years which helped me keep my own genetic disease under control-stopped taking them. Who had times for vitamins? My son needed me more than my body needed them.  Breakfast and lunch-what are those? I was lucky to eat once a day. And boy did that baby weight drop off me super quick along with another 15 lbs before we got send home from the NICU.  I was physically and emotionally exhausted and honestly thought once we got home that things would settle down, we would find our routine, and I would have time to eat and take my medications like I was supposed to.

Boy was I so wrong.  The stress just increased.  It is incredibly hard to include a daily 3 hour bandage change into a baby's routine when they are eating every 2 hours and napping in between feeding.  We had home health nurses coming three days a week and more times than I can count on both hands they would not give me any more than a hour notice of when they were coming and expected I would have everything ready-bandages cut and pain meds given, and Eli's bath already done...and they only worked until 4pm so I rarely had time to fit in feeding myself a meal before 6pm let alone taking my medication since my husband worked during the day and I took care of Eli and our housework alone all day long.  The emotional exhaustion actually got worse, until Eli was 8 weeks old and started smiling and was able to show reciprocated emotions. But as soon as he was able to interact with me it was time for me to go back to work....not part time, but full time.

Working five days a week, an hour away from home, from 2pm-10:30pm, created a whole new challenge. I didn't have to do Eli's bandage change every day anymore because he was approved for enough nursing hours that we could stagger the hours and me and my husband could split the bandage change responsibility between the two of us.  But I still was attempting to get myself ready for work and do a three hour bandage change before 1pm three days a week. I never had time to eat lunch before I left for work, take my medications, or pack lunch and dinner to take with me.  I could never even remember to grab my vitamin/med bag before I left work to take it with me either. Every night I would get home around midnight and the next day I would rush around all over again.  I was lucky to eat fast food on my way to work and could never forgo the processed protein sandwiches that came with the meals even though I knew I needed to start restricting my protein again since I don't metabolize it and no longer had a human in me requiring protein to grow. 

My schedule was such a challenge and I felt like not only did I not have enough enjoyable time with Eli, but I never had time for myself.  I was neglecting my own medical needs to take care of his. And when I was home, his medical needs were just about the only thing I did get to take care of even with him-we rarely got to just play together or cuddle up together.  I begged and pleaded for a new schedule with my manager but the idea wasn't even really entertained. So when a full time and part time position came open at another hospital and I was told I could make my own schedule to fit my family's needs-I knew I had to jump ship and was hopeful this new schedule of having Mondays, Wednesdays, and Saturday's off and still having my Friday and Sunday mornings and afternoons off would help me take care of our needs better. Number one being my own health.

Since Eli's birth I have been experiencing chest and abdominal pains very frequently and overall my body just feels worn down.  Now, I had lost an additional 20 pounds of my pre-baby weight so I thought I LOOKED healthier than I had in a long time-but I didn't feel healthier.  I called my genetics clinic and requested blood work to check my Homocystiene levels and amino acid levels to see where I was at and how much work I would need to do to get myself back on track.  I really wasn't surprised when my levels came back just as high as they were when I was diagnosed with Homocystinuria 4 years ago after being untreated for 25 years.  I was, however, very disappointed in myself because I had such tight control of my disease prior to getting pregnant and pretty good control over it while I was pregnant.  To put things into prospective-elevated levels of Homocystiene in the blood increases the risk of blood clots which can lead to heart attacks and strokes.  A normal Homocysteine level is 5-15.  Mine was 255.  This increases my risk a lot. And so does the fact that I didn't complete my Heparin treatment after my son was born and had a c-section which also increases the risk of blood clots. 

I once again thought as soon as I start my new hours I would have more time to devote to getting myself healthier again. I wanted to get back to taking my vitamins and medication, eating healthier low protein meals that I prepared with fresh products and not just eat steamed vegetables out of the microwavable bags all the time, and wanted to get into a work out program to make sure I didn't gain back the weight I lost and with the hope of getting back down to my pre-diagnosis weight (need to lost 25 more pounds for that). But Eli has been so uncomfortable all day and night this past month, has been having frequent feeding issues, and my days off have been filled with training new nurses that never worked out until we finally found one we liked this week and are hoping she will get more comfortable and will stick around for a long long time.  I've been gaining some weight back from the stress of not knowing how to help our son lately and the stress of worrying if we would ever find a nurse that would work out for us.  I did finally meet with my genetic doctor for the first time since I was 16 weeks pregnant, so almost a year ago, and he was certainly understanding about why I have "fallen off the wagon" with my disease control but also reiterated to me the serious risk I was putting myself in by sharing about another patient of his around my age who just had a heart attack due to not managing the disease.  He didn't even have to tell me about this patient for me to understand how serious I need to be about getting it together again-this entire past month I've been thinking about it and cry because I know I have a son now who NEEDS me alive to care for him.  What good am I to him if I can't even take care of myself?  And what good am I to him if I died or was in the hospital following a heart attack and had lifting restrictions when I got out?!  For three years I worked my butt off to control my disease so I would have a healthy pregnancy and now that he is here I'm just going to ignore the fact that I could die if I don't eat right and take my meds?! I think not.

My genetic clinic nurse and nutritionist are working with my insurance and some pharmacies to reduce the barriers for me.  One barrier being my insurance doesn't cover my life long medication which is $75 per month or protein supplements which are $3000 a month.  I have to take charge and reduce the other barriers which is making excuses and not making the time for me.  That's my goal for this next month-settle into a routine that includes taking my meds, exercising, and healthy meal planning/preparing/cooking/eating.  I think if I can do this I will be so much more effective at having a routine for Eli too and not feeling overwhelmed as if I have no time for anything at all and everything is one giant burden. 

I know all you momma's out there know what I'm feeling and have been there to, or maybe are still there. Please don't forget to take care of yourself. Our babies need their momma's and so do their daddies! Maybe now is the time for you to take time for you too.