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.

Videos:

Our First 4 Pregnancies: https://www.youtube.com/watch?v=H-K_-OCAzcc
           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: https://www.youtube.com/watch?v=UfJ8iLye0gg
           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: https://www.youtube.com/watch?v=RXeNvS4Vmf4
           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:  https://www.youtube.com/watch?v=qF2ePQaQ9X4
            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: https://www.youtube.com/watch?v=G9WdU15C6yU
           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: https://www.youtube.com/watch?v=_L6fUwFMgWQ
           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.)

Eli Month TEN-TWELVE:  https://www.youtube.com/watch?v=6XCGw2v9QqE
           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: http://alexandlindsaysbabyquest.blogspot.com/2015/08/shattered-expectations.html . 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 

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 yes....it 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. 

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!Yea....talk 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:

http://monnierlindsay.myitworks.com/

 

 

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!

 



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. 

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.

What is normal...What is EB?

 

I think every first time parent is constantly battling emotional exhaustion from trying to figure out the most asked parenting question-"is this normal?" Seriously....why aren't children born with a manual? Even with all these phone apps and parenting books and articles-no one can ever be sure that what their child is going through is just a normal phase and not something more serious.  So if it is hard for a parent who has a perfectly healthy baby to figure out what normal is-imagine how hard it is for a parent of a medically fragile baby.  It is insane. We never know what is "normal" baby phases and what is a more serious underlying problem related to our son's disease.  I think we could pull our hair out sometimes and are constantly on the verge of a panic attack out of fear that our child will be hospitalized or that we aren't addressing his needs properly.

 

 

I've always said we have been fortunate to have such a good baby.  And despite his skin disease, he really has been healthy.  He is gaining weight and growing well in length-last pediatrician visit he was 56th% in weight and 74th% in length.  He hasn't had a cold, an ear infection, any respiratory problems.  His vitals are always normal everyday when the nurses check them.  He has an amazing set of lungs...sometimes they work too well;) Since being home from the hospital he has only had a slight fever, which isn't even considered a fever by doctors, twice and it came down immediately with Tylenol.

I would say, though, up until Eli was three months old we struggled with creating a routine which totally jacked up his sleep and our sleep.  We mostly had to take turns sleeping with Eli on the couch-I would take the first half of the night and my husband would take the second half.  He would not sleep in his bassinet or rock-and-play and woke up every 2-3 hours to eat so it gave both of us a chance at getting 4 solid hours of sleep per night.  We also had several days of poor eating at the beginning of November where every day his intake was decreased-26 oz, 23 oz, 20 oz, 18 oz.......I was starting to get worried because he seemed to be having some pain in his mouth and possibly his throat due to the blisters from having EB. But then all of the sudden Eli just took off eating like a champion. We got into a better napping and night time routine thanks to his nurses who worked with him on napping in his rock-and-play. We started experimenting with essential oils at night and learning better ways to soothe Eli to sleep. Eventually by the end of November Eli was only waking up once a night to eat. If he fussed at all but wasn't hungry enough to wake up crying, we would just turn on his mobile music and he would fall right back to sleep.  It was wonderful. So wonderful that we started taking nights instead of shifts.  Eli was happy during the day, always smiling and cooing and even laughing. His skin was looking pretty great too compared to when we came home from the hospital at three weeks old. Bandage changes weren't terrible to get through most days anymore either.

But this past month-our heads have been spinning and our hearts have been hurting for our sweet boy. Starting with "sleep regression"-waking up screaming bloody murder every hour-literally-every.hour. For weeks on end.  Then his skin started taking a turn for the worse-blisters that we haven't seen occur since he was 2 months old.  Big blisters on his feet and thighs.  Wounds on his left knee and right wrist resurfacing and becoming completely raw.  Blisters all over his forehead, on the bridge of his nose, and on the sides of his eye sockets.  Sheered skin on his chest and blisters around his armpits.  

 

So many people contributed this lack of sleeping to the 4 month sleep regression stage that their child went through. But how can we be sure that it is just sleep regression?  Maybe he is in pain from his blistered and raw skin. 

We have even been having feeding problems again.  For a child who has loved to eat and would usually gulp down a 4.5 ounce bottle in 5 minutes and 7 ounce bottle in 10 minutes-most of the time despite the blisters in his mouth-it was heart breaking to see him fearful of his bottle.  We landed ourselves in Cincinnati Children's for a night of observation because of Eli's increased risk of becoming dehydrated due to his EB.  I was concerned that if we did not nip whatever was causing his pain in the butt immediately things would spiral out of control like I've heard happen with other EB kids.

Parents of healthy babies told us he is probably just teething-babies refuse to eat when they are teething because of having painful gums.  Parent's of EB babies told us he probably has blisters in his esophagus and we should get him a g-tube before it gets any more serious.  Is it just teething....or could he really have internal blisters preventing him from eating?

In true Eli fashion, after a full 24 hours of screaming bloody murder at the pure sight of a bottle, once he was seen by the emergency room doctor and given a stronger dose of Tylenol than what we had given him at home twice that day, he gulped down 4 ounces, took a 30 minute nap, and then gulped down another 3.5 ounces and was as happy as could be flirting with the female nurses and attending physician on the unit he was admitted to. Three hours later, he took another 5 ounces. And 5 hours later we were discharged and on our way back home, praying that he would continue to eat. We left Children's with an increased prescription for reflux meds and Tylenol based on Eli's weight change from his previous prescriptions, and a new prescription for a medication to coat the lining of his throat since we weren't exactly SURE about why he was refusing to eat for an entire day. 

It took at least a week before Eli was back to himself. He would still struggle to eat full bottles-wanting to eat smaller bottles more frequently. And he was still waking up screaming bloody murder every 2 hours at night.  Finally after reaching out for suggestions, we started applying natural orajel to Eli's gums at bedtime and being more consistent with applying lavendar essential oil behind his ears and on his foreharm(since his wrists are wrapped) and diffusing a combination of essential oils at night.  We purchased several deep sleep C.D's to play at night so our phones no longer had their batteries drained at night from sleeping next to Eli's head playing music for him.  I thought maybe these parents of healthy babies were right....maybe its just teething.  He does have a white spot on his bottom gums that has been there a couple weeks now and keeps getting whiter.  We also started him back on gas drops because he would scream every time he would pass gas and it was so loud and hard sounding that we knew it had to hurt him. When we had FOUR great days and nights in a row, using this new bedtime routine, I was convinced it was teething and gas pain keeping him awake a night. 

 

I warned my husband about going to his sister's house last weekend to watch the Bengals play the Stealers in the playoffs because I just knew we were going to screw up Eli's sleep again.  Of course, Mommy was right. Like always:) Saturday, Sunday, and Monday night's were torture, again.  We contributed that to the fact that babies like routine and we messed up a good routine we had going on by getting him in bed between 8:30-9:00.  But then Tuesday morning he started having trouble eating again.  He would try to suck on his bottle and cry every time he swallowed. He would only drink an ounce, if that, every two hours.  He would gag on his formula.  I started feeling as if we were being stubborn and ignorant parents by not wanting him to get a g-tube.  The way he was acting made me think he truly does have blisters in his esophagus and it wasn't fair to him to keep having trouble eating and only being able to get any nutrician by oral intake. I thought maybe we should talk to his EB team about a g-tube-as much as it terrifies me and breaks my heart to think about our baby having a surgery and a tube in his stomach.....it also terrifies me that we could be causing him damage by not giving his mouth a throat a break when he physically cannot eat.  Eli was napping in my arms after I gave him some Carafate, his medicine to coat the lining of his throat, and a dose of Tylenol while I was asking his nurse questions about g-tubes.  When he woke up from his 45 minute nap he downed 3.5 ounces in 2 minutes. A couple hours later he downed 6.5 ounces in 10 minutes. I am super convinced this kid does NOT want a g-tube because any time the thought crosses my mind that he might need one he starts showing off and proving he can do without one.  He finished the day at 17 ounces thanks to his first bottle in the middle of the night and last two bottles of the night-this is a big improvement from the last time he was struggling to eat and believe the Carafate and Tylenol may have been the combination he needs to help him. That night he slept really good. Wednesday he ate 32 ounces, napped wonderfully, and slept really good at night too.  Yesterday he ate 32.75 ounces, but refused to take a long nap and was up every 2 hours crying again last night.

Now what? Growth spurt? He had 14 ounces consumed by 10:30 this morning. Teething pain again? Yesterday I felt a sharpness to that white spot on his gums.  Itching? His wounds are moving in the healing direction after three weeks of blistering, refilling, and skin dying off. Wound pain? His wounds are really raw right now until they grow new skin.  Internal blisters? I noticed a blister on the end of his tongue today. Respiratory issues? My husband said he was breathing hard in the middle of the night and me and his nurse noticed it too later in the morning.

Being a parent is a difficult job and leaves us often feeling helpless for our children.  We only want them to be as healthy as possible so it is hard not to freak out and feel like you are missing something that could cause serious harm if left untreated.  That is true with any child. It is even more true with a child who has a serious medical issue.  I find myself stuck somewhere between annoyed at people who think this is only a skin disease our son will grow out of and who suggest what he is going through with his eating and sleeping is just a phase that all babies go through when having developmental leaps-to being annoyed at other EB parents who immediately jump to the worse possible scenerio and makes us feel like we are putting our son in danger of death if we don't get him a g-tube and are torturing our child because we don't give him narcotic pain meds.  I feel like he is probably experiencing a little bit of both sides of the fence and we just have to be extremely diligent to watch for changes in his behaviors and vital signs.  He is a happy, smiling, babbling, laughing, playful boy 90% of the time when he is awake-even on the days when he doesn't want to eat much and after the nights he hasn't slept much.  I don't think anyone, even experienced parents, can say 100% for sure that what their child is going through at any given time is "normal" because every child is completely different-healthy or not.