Friday, June 17, 2016

5 Ways My NICU Baby Changed My Life



Milestones can bring a lot of emotions for parents that have gone through trauma with their babies. For me, Emma’s birthday is particularly difficult. Her life is full of celebrations and overcoming obstacles, but when I think back to the months leading up to her birth, the day we welcomed her into this world, and the time she spent in the NICU, the memories overwhelm me. Of course I was overjoyed to add another precious girl to our family, but I had many moments that the fear of losing her just crippled me. This journey with Emma has transformed my life in so many ways. I feel led to continue to be open and share my story, in hopes that it will bring hope and encouragement to anyone that may walk such a difficult road. There are thousands of people fighting for their child's life at this very moment. Please know that you don’t have to walk alone.


1. I remember everything.
There are quite a few days along this journey that are unforgettable. Some of the days were very traumatic for any momma to experience when their child’s life is at stake. This resulted in PTSD for me, which is pretty common for NICU mommies. I will never forget the day of Emma’s hydrops diagnosis and all the crying and confusion that followed. Coming to terms with the fact that we may never get to meet our daughter (alive) is something no parent should ever have to face. I will never forget the day I had fetal surgery. This turned out to be a life-saver. Including  the moment the doctor performing the surgery told Justin "I was a millimeter away from her heart, and if I would've pierced her heart, she would have died instantly." Praise God for steady hands. Emma and I both still have our scars from the surgery, and we refer to them our “battle scars”. I will never forget the day Emma was born, the joyous moment I heard her first cry, and the heartbreak that followed because she was immediately taken to the NICU. I wasn’t allowed to visit her because I just had major surgery (minor detail) and needed to recover. I will never forget laying in the recovery room alone listening to the new mom on the other side of the curtain nurse her newborn baby for the first time while my arms were empty and tears of jealousy ran down my cheeks. I will never forget the first time I held Emma at 5 days old and how tiny and fragile she seemed. I will never forget walking out of the hospital after I had been discharged. I had to leave my daughter there for strangers to care for her. I couldn’t stop crying which resulted in unbelievable pain from my C-section that I could barely walk. It was excruciating, and probably the worst moment of my entire life. I knew Emma needed to be in the NICU, but it simply wasn’t fair that I had to leave her. I also remember walking out of the hospital at the same time as another couple who was leaving with their new baby. My heart was breaking, and their hearts were full. Watching them was like a knife through my heart. I will never forget the day Emma almost died in the NICU. She had group B strep, a blood infection, and the doctors believed that because she was so sick, she may have developed spinal meningitis. Justin was working, and I couldn’t figure out why Emma’s doctor kept asking me if Justin could come to the hospital or if there was anyone else I could call, because I shouldn’t be alone. Then he told me the news. If Emma has meningitis, she most likely won’t survive. If she does survive, she will be severely handicapped for the rest of her life. My world came crashing down. This was it. The life-changer. I called Justin and he raced to the hospital. My mom brought Laney too, and we sat in the Ronald McDonald family room and prayed like we’ve never prayed before. After the doctor was finished with the spinal tap, he came and told us that Emma’s spinal fluid was clear and he was confident there was no meningitis. I will never forget that moment either. I’m pretty sure I jumped up and hugged him. We praised God for His continued faithfulness and healing hand over our girl. I will never forget the day we brought Emma home. Justin and I both cried when we left the hospital as a family of four. Life could finally begin again for our family.  




2. I changed. A lot.
I recently went through counseling to help sort out the emotions I still feel (3 years later) when I reflect on Emma’s journey. I found an amazing therapist that specializes in reproductive trauma, which is anything in the pregnancy or birth process that didn’t go as planned. Talking to someone who understood and has been through similar traumas was life-changing for me. She validated my feelings, she explained why I have these feelings, and she helped me get started on the road to becoming myself again. I had been diagnosed with depression and anxiety a few months after bringing Emma home, but the medicine only seemed to numb the emotions, and I never found anything that really helped. I felt like I was living in a fog. I didn’t want to bury feelings, I wanted to dig them up, sort through them, and move forward. Counseling was a painful process that opened wounds and raised my anxiety, but it was worth it to make the step towards healing. I will probably always cry when I think about everything Emma has been through. Not always tears of sadness, but tears of pride, joy, and amazement at how God healed her. Many people described me as strong during this journey with Emma, though I never truly felt strong. It was God’s strength and power shining through. I used to feel strong in different ways; confidence, decisive, bold, accomplished, etc., but this is a different definition of strength. Now, I feel strong when I embrace my weaknesses and imperfections. I feel strong when I realize I don’t need to be a perfect wife, mom, or friend and I can call on God for guidance. I feel strong when my best friend tells me I don’t have to go through this alone, and that she is here for me in whatever I need. I feel strong when my husband tells me that he loves me and that he supports me in this journey to be myself again. One thing I do believe is that it takes a very strong person to seek help. I truly believe counseling is great for anybody, and it is probably the best advice I can give, along with prayer.


3. I stopped caring.
My therapist told me she believed I went into shock after Emma’s diagnosis, and I stopped caring for myself and put all of my energy into her. Navigating through my new world of depression, anxiety, and PTSD has been nothing short of challenging. I didn’t understand mental illness before my own diagnosis, and I was embarrassed to talk about it because I thought it was something I should be able to control. I despised the fact that my thoughts, words, and actions weren’t always in my control, and feared that if I accepted this then I would be accused of using it as a crutch. It took me a while to tell anybody other than my husband about my mental illness, but once I realized it was nothing to be ashamed of, I started opening up about it. We’re all imperfect, that’s why we need Jesus. There is so much beauty in imperfections. My imperfections tell a story of doubt, fear, grace, mercy, and hope. I realized there was nothing appealing about me suffering alone on the inside while trying to appear “normal” to everyone around me. I now understand that I am loved for who I am inside. One piece of advice for those that have loved ones suffering from mental illness; give them grace. God gives us all grace, especially when we don’t deserve it. Sometimes we just have bad days. We are our own worst critics. We may not deserve it, but we need grace. I am grateful for the circle of people that love me unconditionally and have given me undeserved grace through this journey. Not only do I hope to receive grace, I try to give it as well. One of my most favorite “takeaways” from our church is to believe the best in others. When there is a gap between what I expected and what I experienced, I will believe the best. If I need to fill that gap, I will come to you and ask for truth. Can we all try this a little more? Grace is big. It can change the world. Little things don't matter. Once my child’s life was at stake, I saw the bigger picture. I don’t care about petty things. I don’t have time for it. There are more important things in life than getting offended about meaningless drama. My daughter almost died, y’all. That’s big. But she’s alive. God saved her. That’s bigger. This journey gave me a new outlook on life. I value my relationships so much more. More than letting little things offend me. More than actually believing someone close to me would intentionally do something to hurt me. More than getting my feelings hurt, for example, when someone talks about how happy they are that their baby is healthy. Does it sting a little? Absolutely. But I believe more than anything that it isn’t meant to be hurtful. I believe the best. People are allowed to be happy about their healthy babies, and I’m allowed to be sad about the times that mine wasn’t healthy. I would never wish the pain that I experienced on any parent. I hate that I had to watch my baby suffer. I hate it. If I could’ve taken her place I would have in a heartbeat. Sound familiar? God willingly sacrificed his own son, his child, to save us. There is so much beauty in that. I can’t comprehend the love God has for us to do such a thing. I begged and pleaded with God to save my child, all while knowing that he sacrificed His own. He loves us, so very much. We simply don’t deserve it. Can we all try to love each other more anyway? Even when I feel unlovable, I know the people in my inner circle will love me, believe the best in me, and come to me when there is confusion. I love that my relationships are thriving because of this concept. I love that my husband has seen all of my ugly moments and still loves me, believes the best in me, and encourages me to do the same for others when I have doubts. It’s a beautiful thing, y’all, and the world could use a little more of it.




4. I step out of my comfort zone.
If you know me well enough, you know I’m pretty reserved. I am pretty shy, and not great at reaching out to others. That changed. I have found that every time God wants to use my story, it’s way out of my comfort zone. But that’s okay. It’s all for His glory. Every moment, good or bad, He was present. In my darkest moments, He was the only one there. I wish somebody who had been through a similar experience had reached out to me to tell me what I was feeling was normal, and that I didn’t have to be alone. But there was nobody there. Nobody knew how much I was struggling. Nobody knew that I cried every moment I was alone without somebody there to distract me. Nobody knew. I suffered silently for 3 years. Isolation is pretty common for NICU mommies. Unfortunately, we just don’t know how to navigate through the hurricane of emotions thrown our way, so we hold it in, and try to focus on our babies. I wish I would’ve had someone, but I didn’t. Thankfully, after counseling, I realized that one of my purposes of going through this journey with Emma is to be that person to someone else. I want to be there to walk alongside another mommy who is struggling just like I did. I want everybody to know that miracles still exist. I don’t want anybody to feel alone. I want everybody to have hope. After all, why would we even keep fighting if there is no hope? I am part of a hydrops support group on Facebook, and I love hearing stories and sharing ours to bring a little hope. These families are in the middle of their storm. Most of us know somebody going through a storm. Lean into them, don’t turn away. You don’t need to have all the right words, just be present.

5. I’m grateful.
Although memories full of fear seem to take over when I think about the 13 months of my life spent worrying about Emma’s future, I can push the fear aside and find the joy that my oldest daughter Laney brought to me. Every moment I spent with her was one less moment that I spent in my bed crying alone. She was only 9 months old when Emma was diagnosed with hydrops, so of course she didn’t understand. It didn’t matter. All she knew was that my growing belly was named Emma and she loved hugging and talking to her little sister. She didn’t need to know all the scary things; she just wanted to love on her sister. Laney was an amazing baby. She was always happy, never cried, easy to care for, and could make me smile and laugh at any given moment. She is the definition of joy. Laney truly saved me through the most difficult days. I am so grateful for her. I am so grateful for Emma. I am so grateful for Justin and how much our marriage has grown through this journey. I am grateful for my inner circle. I am grateful for this life I get to live. I seriously love my life. I am grateful for God’s constant love and presence in my life.



To those of you that have walked alongside me, prayed for our family, served our family, and loved us through the hard times, thank you. You have blessed my life more than I could ever express. My heart is so full because of you. Thank you for being a part of our story. 



Tuesday, June 17, 2014

One Year


It's hard to believe it has been one year since Emma was born. One year since one of the most difficult days of my life. One year since we didn't know what Emma's future would be, if she would have a future. One year since I was told that I wasn't allowed to see, hold, or touch my newest daughter. One year since my heart was broken in half. One year.

I have heard that anniversaries of events and birthdays are hard when it comes to NICU babies and parents, and that is absolutely true. The rollercoaster ride we go through with our babies is unlike anything I have ever experienced or imagined. I had to watch my tiny and fragile child fight for her life. I have never felt so helpless, so defeated. Those feelings are very fresh. If it were me or my husband fighting for our lives, I think it might have been easier, because I know how strong we are, and I know we have both put our faith and trust in God. But it wasn't me, it was my child. As parents, we have an incredible responsibility to take care of our children, to protect them. But this was out of our hands. At first, that fact made me extremely sad and even angry at times. My baby was fighting for her life and I couldn't help. I just had to watch. The only thing I could do was pray. But wait, isn't that the best part of it all? It was out of my hands, but it was in His hands. God's hands. Who else could I trust more than Him? He is my creator, Emma’s creator. “For you created my inmost being; You knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made.” Psalm 139:13-14. God created Emma long before we even knew she existed. He had plans for her, for us. Emma’s hydrops was no surprise to Him. Although it was difficult to see at the time, God’s timing was absolutely perfect. If this journey with Emma had happened a few years ago, I can almost guarantee that I would not have handled it very gracefully. In September of 2011, my husband and I decided to try out a new church, and we even joined a community group full of complete strangers. Little did we know these strangers would become family. We learned what it meant to have a relationship with God, and also how important it is to be connected to other believers and walk through life with them. We fell in love with our church and the people in it. Northpoint was our home. My life changed for the better.

Fast-forward a few years and there we were, in the middle of Emma’s journey where I was able to take all my worries, my need to control, my fears, my doubts, my hopes, my faith, and my trust, and give it all to God. For the first time in my life I knew what it meant to fully depend on God. And for the first time I was also able to begin to comprehend God’s love for me. You have probably heard the saying “God won’t give you more than you can handle.” It’s a nice thought, but I don’t believe it. God gave me way more than I could handle because He knew it would bring me grow closer to Him. He gave me overwhelming peace and comfort. Although I had plenty of times that I couldn’t pick myself up off the floor because the pain of watching my precious baby fighting for her life then having to leave her in the hospital was so unbelievably difficult, God was with me, waiting patiently for me to remember that it was all in His hands. Our amazing church family brought us meals for months, helped watch Laney so we could go visit Emma in the hospital, cried with us, rejoiced with us, walked through the hard times with us. This was all part of God’s plan for our family. If we hadn’t found our church a few years ago, I don’t know how I would’ve made it through. I know one thing; we would not have made it through without our families and our amazing community group. Thank you for having the hearts of servants and for walking through life with us.


Summary of Emma’s first year:

Emma’s life started out a little different than most. She spent 54 days in the NICU fighting for her life and defying all the odds along the way. When she finally came home, she continued her physical therapy for 4 months until she caught up enough with her physical development. She is a very active and determined little girl, and she is still right on track with her adjusted age. Emma was born with a hole in her heart, which is fairly common for preemies. She saw her cardiologist in January and since the hole is significantly smaller, she doesn’t need surgery! At Emma’s 9 month check up with her pediatrician, we found out that since she had been off her Lasix (diuretic) for a few months and her body had not retained any fluid, that means we don’t ever have to worry about the fluid coming back! I waited a year to hear those words, and it still doesn’t seem real. I am still amazed at how far Emma has come. At one point during my pregnancy, she was given a 15% chance of surviving because of how much fluid her body was accumulating, to which the cause is still unknown. She has come so far from that 15% statistic, and we couldn’t be more proud! Emma is always smiling, which is a constant reminder of all that she went through and how happy and thankful we should be every minute of every day.

(Make sure you scroll down to see the pictures of Emma's first year!)


So yes, it has been one year. One year since I looked into the eyes of the tiny little girl who became my hero. One year since I realized just how deep God’s love for me is. One year since I experienced strength I never thought possible. A lot has happened in one year, but it has been the best year of my life. Emma Grace is so sweet, so happy, so perfect.  We will never go a day without thanking God for giving her to us, for saving her life. To God be the glory.

To our family and friends who prayed for our family, brought us meals, helped with Laney, supported and encouraged us, helped us financially, cried with us, celebrated with us, and praised God with us, thank you from the bottom of our hearts. You have been a part of our journey, our miracle. You have blessed us beyond measure.

To my husband, my rock. Thank you for stepping up and leading our family while I struggled to find my balance. Thank you for being patient and supportive when I had my weak moments. Thank you for loving me through it all. You are the most amazing man and husband, and I am so proud to be your wife.

This song played on the radio every single time I was in the car driving to the doctor. It continues to encourage me that God is so much bigger than anything we will ever go through in this life.

“Whom Shall I Fear” - Chris Tomlin

You hear me when I call
You are my morning song
Though darkness fills the night
It cannot hide the light

Whom shall I fear

You crush the enemy
Underneath my feet
You are my sword and shield
Though troubles linger still

Whom shall I fear

I know who goes before me
I know who stands behind
The God of angel armies
Is always by my side

The one who reigns forever
He is a friend of mine
The God of angel armies
Is always by my side

My strength is in Your name
For You alone can save
You will deliver me
Yours is the victory


Whom shall I fear

And nothing formed against me shall stand
You hold the whole world in Your hands
I'm holding on to Your promises

You are faithful


 

If you are in the Austin area and want to experience a different kind of church, check out www.experiencenorthpoint.com and come visit us sometime. My life has changed along with hundreds of others because of this amazing, authentic church, and the wonderful and genuine people that we have met. You won’t regret it.


Emma Grace- just a few days old after her first bath

 
1 month old
 
2 months old and finally home!
 
3 months
 
4 months
 
5 months
 
6 months
 
7 months
 
8 months
 
9 months
 
10 months
 
11 months
 
1 year!

Sunday, November 3, 2013

How is Emma Grace?

I have had many people ask me lately, how is that little miracle baby doing? Well, she is absolutely wonderful.

The Austin American Statesman contacted us to do a follow up article on Emma since her story has such a happy ending, but honestly, I am disappointed with the article. For whatever reason, the writer decided to leave out all of the answers I gave about what an incredibly difficult journey this has been, and how God has completely carried us through. You can draw your own conclusion as to why this was left out, maybe he ran out of space, but instead of dwelling on that, I just decided to write my own article.

Emma Grace is doing great. She is over 12 lbs now, making huge progress in physical therapy, holding her head up, rolling from tummy to back, smiling, laughing, and trying to talk. If it is possible, she is even happier than her big sister was at her age. But when you look at all that Emma has been through, why wouldn't she want to smile all the time?


 One of the questions I was asked from the writer was "What do you want people to take away from your story?" My answer is simple; for people to see the value in every life. I know that many people in our situation would have chosen to terminate the pregnancy, but what kind of parent would I be if I decided not to give Emma the chance to fight? She proved how strong she is, and made me a stronger mother and person in the process. I admit, this was not an easy journey at all, and the fact that I had a HUGE support system and many family members, friends, and strangers praying for all of us helped us tremendously. But the fact of the matter is, God is the only one who was with me every step of the way. During my darkest moments when I questioned why He would allow this to happen and why I had to watch our precious baby suffer, He showed me His grace. I begged Him to somehow let me take her place. I couldn't watch another family leaving the hospital with their new baby without breaking down into tears of anger and jealousy, while I went to the NICU everyday to visit Emma. Why couldn't my baby be "normal?" Looking back now, I understand why God chose us to be Emma's parents. He knew that we would choose life, and we would cheer her on during the fight. Going through something like this is a feeling that so few mothers know, and one of my biggest reasons in sharing this very personal story is to help other parents on their journeys. Surviving the very traumatic experience of the NICU is not easy, and for me, it was not possible without God. I have heard from many people how strong they think I am, but my strength comes only from the Lord. The hardest thing we had to pray was that if God was going to take Emma from us, that He would help us to see His purpose in that. Although this journey is the hardest thing we have ever been through, it is one that I will never forget, and I will never regret choosing life for Emma. Regardless of the situation you are in, I believe that every baby is God's creation, and everything He creates is for a purpose.

The other question I was asked was "When will you tell Emma the story of how she almost didn't make it?" We have already told her, and will continue to do so until she can tell it on her own. As parents, we tell each other just about everyday how blessed we are and how amazing both of our girls are. Laney Faith, our almost 18 month old, is a spunky little girl who we thought we would have trouble conceiving because of other complications, and we call her our first miracle baby. She projects so much joy, and it is impossible not to smile when she is around. Emma Grace, 4 1/2 months, is a miracle in a different way. She is a beautiful and happy little baby, with a very contagious smile. Holding a miracle in my arms everyday is a feeling that can't be duplicated. It is so very important for both of our miracle girls to know how special they are to us, our families, and especially to God. We will never be perfect parents to these girls, but one of our many goals is to tell them everyday how much they are loved, and what makes each of them so special.


Life at home couldn't be better. Laney absolutely adores her little sister, and she is anxiously awaiting the day when Emma can finally play with her. I have my hands full with these girls, but I wouldn't have it any other way. I cannot imagine being anymore blessed and I am so thankful that God has given me this life. My hardworking husband supports our family so I can stay home and raise our girls, how much better can it get? Once again, from the bottom of our hearts, thank you for praying for our family. We are enjoying the "happy ending" to our story.



Here is  a link to the article appearing in the Austin American Statesman today:

Corrections:
My husband's name is Justin, not Justice.
We found out about Emma's hydrops when I was 18 weeks pregnant, and fetal surgery was performed at 21 weeks.

http://www.mystatesman.com/news/news/local/what-ever-happened-to-the-schwartzes/nbfgD/

Thursday, September 5, 2013

Growing Girl

* Emma went to see the cardiologist last week for an ultrasound, and her lungs and heart are doing great! She still has the small hole or opening in the top septum of her heart, but that is normal for preemies and it should close on its own. If it hasn't closed by the time she is 5-6 years old she will have to have a procedure to fix it, but it is nothing to worry about now. We will go back to the cardiologist in 6 months.

* Emma also had an x-ray last week to monitor the fluid around her lungs. Good news, the amount of fluid has not increased! She will continue taking the Lasix diuretic everyday to keep the fluid out.

* Physical therapy is going great so far. Heather comes to our house once a week to work with Emma, and she has already made lots of improvements! Emma is doing great at tummy time, tracking with her eyes, reflexes, and rolling from side to tummy! Her fighting heart is very determined to succeed!

* Before Emma was discharged from the NICU, Justin and I were required to attend a discharge class. The most important thing we learned was infection and sickness prevention. Preemies are at a greater risk of catching the flu and RSV, and since the season has already started, we have to be really strict on who can hold Emma and of course washing our hands. Our parents, grandparents, and siblings are the only ones we are allowing to hold Emma right now. We really appreciate the understanding of extended family and friends. The nurses and doctors told us several times that nobody other than Justin and I should touch Emma's face or hands. Trust me, it is not easy telling our family not to touch this precious baby, but we have to do what is best for her. Bottom line, if Emma got sick, she goes straight to Dell children's, and nobody wants that to happen!

* Emma had thrush when she left the NICU but we gave her medicine and it went away quickly and her appetite returned. She is currently eating 4 oz every 4 hours. She eats at 10 pm and usually sleeps until 7 am, thank God!

After almost 8 weeks in the NICU, and only being held for an hour a day, Emma just wants to be held all the time! I can't complain, because holding one of God's miracles in my arms is an amazing feeling. Laney doesn't mind, and she loves to give her little sister hugs and kisses. Life at home with two girls is so great! Thank you for continuing to pray for Emma Grace. We are so incredibly blessed and honored that God chose us to be her parents. She is the perfect addition to our little family. Please continue to pray for her, and for Justin and I, as the emotions are still very fresh, and the medical bills are piling high. We are continuing to put our faith in God to carry us through.


Best Friends!

Thursday, August 22, 2013

Pictures

Here are a few pictures of our little miracle, Emma Grace. All pictures were taken by Adorn Photography. Please check out the website www.adornstudio.com and call Tiffany for your next photo session! Not only does Tiffany take beautiful pictures, but she is a beautiful person and has been such an encouragement to me through this journey with Emma, as she is going through a similar journey with her own little girl. Her photography is truly from the heart.






Friday, August 9, 2013

NICU Graduate!!!!

Emma Grace graduated from the NICU this afternoon! After 7 1/2 long weeks, many tears, many prayers, and many blessings, we brought our little miracle baby home! Driving away from the hospital with both of our girls in the backseat and tears in our eyes was such an incredible feeling. We cannot thank you enough for your support, encouragement, and prayers through this journey with Emma. We absolutely would not have made it through without all of you.

Emma will continue to take the diuretics daily until we follow up with the cardiologist in 3-4 weeks to see how she has progressed. She will start physical therapy in the next week or so. The main thing is, she is home, and she is healthy!

Here are a few pictures from Emma's homecoming. Her big sister Laney and our sweet dog Belle did not want to leave her side!


Ready to go home! Emma is wearing the same dress
I wore to go home from the hospital, and her big sister wore it too!
 
 
Precious girl.
 
Laney loves having a backseat buddy!
 
Belle and Laney are so excited!
 
Proud Big Sister!

Saturday, August 3, 2013

So Close!

* Emma was taken off her cannula this morning! She is breathing great and seems much happier!

* She is also bottle feeding every time starting today! Today is a big day for her, so it will take a little time to adjust and build stamina. Her feeding tube will stay in until she has been bottle feeding for 24 hours.

* Emma had another echocardiogram this week and while the hole in the top of her septum is the same size, the overall function of her heart has improved a lot so the diuretics have been helping! We will continue to give them to her until the cardiologist feels it isn't necessary anymore.

* If Emma continues on the road she is on, we are hoping to bring her home by next weekend! Words can't explain how excited we are for this news! Please pray that Emma stays strong, we are so ready to bring her home and start our lives as a family of 4!

No cannula!
 
We finally took Laney in the NICU to meet her little sister Emma for the first time!
She pet her head, then poked her in the eye. We'll have to work on that..
 
Sweet girl