Just an update. Ya know, after years. . . . .

Hilary (wife) and I have lived in Kentucky for almost 8 years. We have 2 daughters, Louisa 4 years, and Margaret (Maggie) 17 months. Still have the dog, Jackson. I love my job (Industrial Sales), and have even worked my way to be a branch manager. www.netherlandrubber.com 

Here are some pictures, and a video. They pretty much describe my current home life. 

This was a video taken, just a normal day in the Riley household. 

This is my beautiful daughter Louisa, ready to be a super hero for Halloween. 

This is my Maggie, totally ready to be an OWL for Halloween. And yes, she really doesn't smile all that much, not like her sister. 

I love the life that God has given me. My family is amazing. My goodness, see how much has happened in just the 3 years since the last post. Louisa is a little girl!!! Love it. 

Anyways, that's all I have for now. 

Trailblazers

Trailblazers

Recently logged on Mike's facebook page. I do this from time to time and yes I know it is cheating. Over a year ago I decided to withdraw from facebook and every now and then when I need a fix I will vicariously live through Mike on facebook. While on the social media time-sucker I looked up Born this Way from the A&E network. This is pretty crazy but I remember when Mike and I were in the hospital post-delivery room the Season Premier was the day after Louisa was born. I remember smiling at Mike and wishing we had cable so I could watch it.

During the episode Megan's mom, Kris Bomgaar shared Megan's birth story. She was 23 years old and found out about Megan having Down syndrome and a serious heart condition in the same day. While Megan's mom was sharing her birth story I was weeping, of course, because that is what I do. It takes me back to our story, not only the day I met Louisa but the serious heart condition we faced and the nagging fears of surgery. After listening to her story I was filled with an undying gratitude.

When I was pregnant with Louisa I found two blogs that rocked my world. When I was feeling particularly scared I would open up these blogs and allow myself to be reminded I was not alone. The first is written by a beautiful brave Momma, Kelle Hampton. Her blog is at Kellehampton.com. As I read Kelle and Nella's story for the first time I was comforted by the raw honesty of her words. Kelle is so genuine and brave. Her vulnerability shed light on my grief and 'loss'. I realized I was not alone.

The second blog revealed itself more as a divine intervention. While pregnant with Louisa I would  incessantly google the words 'Harmony Trisomy Test: False Positives'. The Harmony test was the non-invasive blood test I took to see if Louisa had Trisomy 21. If you haven't read our Diagnosis story you can find that here.(It is a very long emotional post... consider yourself warned)
After weeks of my unsettled investigation on the statistics for False:Positive test I came across this blog, News Anchor to Homemaker.
I was drawn to Jill's story and her faith. At the time I had not found a lot of reading material that included ones faith when talking about Trisomy 21 (Down syndrome) because it is a 'thing'... a chromosome issue. I was finding article after article from the medical perspective and finding very little from the eyes of a mother. When I found Jill's blog I was late in my third trimester and I remember clinging to every word. My elevated frustration towards the Lord had lessened and I was ready to listen. After reading her blog I felt ready to fight for my child and her future. I felt excited to meet Louisa and see how she would impact the world.

That is why I have so much gratitude to those that have gone before me. I am having a hard time finding the words to express my appreciation. I think about Traci and Emily Brewer. Traci is the director of DSACK, Down Syndrome Association Of Central Kentucky. I think about Kris Bomgaar and Megan. I think about my friend Morgan Schafer and her daughter Gracie. I think about therapist that have pushed for early intervention for our babies. I think about Doctor's that specialize in Down syndrome. I think about our Cardiologist who when asked by my husband, "What if she does have Down syndrome?" looked at him and said, "You will be her biggest advocate." I am so thankful we were protected (mostly) from Doctor's encouraging us to abort our baby or give her up for adoption. I am grateful to our pediatrician who measures Louisa, solely on the typical milestone scale even after I tell him it is okay to measure her on the Down syndrome scale.

I often hear stories from friend's who now have children with Down syndrome in their 20's and some of the issues they faced. This journey has been difficult, yes, but if I am being honest, I wouldn't even know where to start fighting for my child without these resources. Signing Louisa up for a Medicaid waiver was insanely complicated but overall I have not had to fight like parents before me. I was gifted with a great First Steps Case Manager and OT. We have an incredible Cardiologist that loves her job so much she is 80 and still sees patients. Louisa is currently in an exceptional daycare and on the wait-list for the Child Development Center of the Bluegrass where she will be taught with children that have special needs and typical children.

Thank you! Thank you to all that have gone before me and fought hard for your child(ren). I am thankful for the hospitals that have taken great care of L. I am grateful for the other new mommas that have babes with Down syndrome that I can turn to when I have questions. I am grateful for the students and families that have fought, hard, to enforce the IDEA and the judicial interpretations that have been won through the Supreme Court. Thank you for fighting for the education for your student because of you I have an easier path and I have courage to fight for the best opportunities for Louisa. I am grateful for the real words said on the blogs I found in the darkest days. I am grateful to all that read our blog and support our little family. Thank you for your kindness.

When the Bubble Bursts

When the Bubble Bursts

Recently our little family of three took a vacation to Destin, Florida. Mike and I had planned the trip long before Louisa was born and after our naiveness wore off we realize why new parents don't often take vacations. The trip was a perfect storm of adversity and strain. Louisa got sick prior to departure and after a visit to her beloved pediatrician it was confirmed she had an ear infection. We hoped for the best and still proceeded with the plan.  

We tried to take walks on the beach and go out to dinner but it typically ended with Mike and I taking turns inhaling our food and Louisa yelling in discomfort. After a couple days in Florida I started to feel this weight on my shoulders. I couldn't explain it. I started to feel insecure. In Lexington we are in a bubble. We have our family and then we have our friends, which I consider them just an extension of our family. People know Louisa and love her regardless of the Downs syndrome. While we were in Florida I felt like I had to explain her to the servers or people on the beach. I felt like I had to protect her from their judgements or negative thoughts. I was in the midst of some serious spiritual warfare and was failing to lay my insecurities before the Lord.  

Towards the end of our trip after sleepless nights and stress Mike sent me to get a massage. The massage was by far the best massage I had ever had. As I opened the door excited to share my experience with Mike I was startled by a big, "Surprise," coming from my husband and some old/new friends. 

Mike had arranged for Morgan, Chad and Gracie to come and spend the last three days with us at the condo. I couldn't have dreamt of a better surprise. Morgan and I went to middle school and high school together and after Louisa was born we reconnected. Gracie is their 4-year-old (soon to be 5) daughter. Gracie has Down syndrome. Gracie instantly became my new best friend and watching Morgan be her mom was incredible. I consider the timing of their presence a divine intervention. I saw all of Gracie's abilities and felt so encouraged. I saw her momma give her independence and grace. It was good for both Mike and I's hearts. 

After saying good-bye to our sweet friends we began our journey home. As we drove towards Lexington I made the decision that I was going to try harder. I was going to push harder. I was going to stop failing to parent my child and do whatever needed to be done. As I played with Louisa in the hotel room I felt shame for being insecure about her having Down syndrome and again decided I wouldn't fall into that trap again. I decided I would be better. Oh the pride that was pouring out of my soul covering up my need for the Cross. 

After getting back to Lexington I realized I needed like 45 more hours of sleep. Unfortunately, the extra sleep didn't happen and we started our normal work/daycare week. Louisa started daycare at Milk and Honey in Lexington. Every morning when I drop her off her teacher glows with excitement and joy. At first dropping her off was terrifying. Would she eat? Would she sleep? Would she have meltdowns? Would her teacher hold her and soothe her? Would she be taken care of? I soon learned the answer to all of my apprehension was YES. Yes she would eat. Yes she would be taken care of. Yes she would have meltdowns but yes she would be soothed. Ms. Rebecca made it easier and easier for me to drop Louisa off because I trust her with my whole heart. She loves Louisa. She is genuine and loving. I couldn't have dreamt of a better surprise. 

Even though God was continuing to protect our little girl and provide her with the best care I was still discouraged. Sunday night I felt defeated and grouchy. As I listed, in my head, my insufficient attempts of the day I started to cry. I started blaming Mike. I convinced myself that I was the only one that cared about Louisa's progress. If he cared more Louisa would be rolling over and sitting up. I feel sad to admit this to you all but it is the truth of my dishonoring flesh.

Monday morning we had Louisa's Occupational Therapist come to the house for her appointment. I confessed to Jessica my discouragement and doubt. Jessica graciously listened and offered encouragement. All day I just kept thinking; What am I doing wrong? How can I be better? How do I motivate this child to push herself? Tuesday evening L and I were finishing up her bedtime routine. If you have spent any time at our house in the evening you know I am a little bit crazy about bedtime. Our bedtime routine serves many purposes but it is also my most treasured time with my girl. I laid L down on her blanket on the floor and went to the bathroom to fill up her diffuser with water. As I walked back in her bedroom I had to do a double-take, L was on her belly. BUT WAIT... when I left the room she was on her back?? It was probably just a fluke thing, every now and then she can roll  if she is on uneven ground or has a bit of assistance. I rolled her onto her back and turned on her humidifier and plugged in her diffuser and as I turned around and she was pushing herself onto her belly from her back again. WHAT?? Did I just imagine that? I laid her on her back again and this time I sat and watched and sure enough this little girl was rolling! I couldn't have dreamt of a better surprise.

Not only was the little girl rolling but she did it at home with me! She hadn't done it at daycare that day! Tears filled my smiling eyes and I held Louisa close. I am so sorry, I whispered, I am so sorry for making it about me. I closed my eyes and thanked God for continuing to humble my prideful heart and not giving up on me.  The fact is I can do everything on my own accord and still fail. I can push, get frustrated, and plead but it isn't about ME. I could do everything 'right' and still fail. I could do everything 'wrong' and succeed. I pray God continues to open my eyes and humble my heart. I sometimes feel like I don't deserve to be this beautiful girl's momma but I am so grateful I am! 

We call it 'Louisa time'

Louisa Jean Riley 6 Months Old

I never imagined our first baby would have Down syndrome. I never imagined our first baby would need open heart surgery. I never imagined our first baby would be 'failure to thrive' and require a feeding tube. I, also, never imagined the lessons I would learn throughout this first 6 months of this sweet baby's life. Being a parent is a very humbling experience. I knew I would learn to be patience but I never imagined just how patient. 

Louisa has had an NG tube since she was 2.5 months old. I remember the day her pediatrician looked at me and said, "It is time. She will need to get the feeding tube Hilary." The lump that formed in my throat was so painful. The phrase, "You just failed your child," scrolled on repeat through my mind. I pushed down the painful feelings and packed our bags for the hospital. I grabbed my fake smile and 'armor' and accepted the fact that Louisa would have a feeding tube.

Prior to Louisa's surgery Mike and I constantly looked to the surgery for relief. The surgery was our spot of light in the dark cave we had been stuck in for months. I was convinced that after surgery our lives would change immediately. I kept picking myself up off the ground because it WAS going to get better. I felt strength because there was an end to our mess. 

When we brought Louisa home from Cincinnati and there wasn't instant gratification I was broken. It wasn't supposed to be this way. Hadn't I been strong enough God? Hadn't I been patient enough God? Hadn't I glorified you enough God? Hadn't I loved this baby enough God? Had I not leaned on you hard enough? Had I not prayed hard enough? My soul was hurting. My heart longed for a 'normal' life. I was stuck in 'tunnel vision' (Val Clark, Fort Wayne Young Life talk).

I hated the NG tube. I hated feeding Louisa with syringes. I hated washing thousands of syringes everyday. As much as I hated the NG tube I wouldn't even talk about a 'G' tube. (If you are not familiar with a G Tube click this link Kids Health G Tube) Last week I could not shake the thoughts of Louisa getting a G tube. Several people asked me about the possibility of a G tube and I, myself, thought it was the path Louisa was taking.

Then a miracle. Louisa started taking more and more of her bottle orally. The first time she drank all 4 oz herself I sobbed. I was holding Louisa and walked into the kitchen with tears in the eyes and whispered, "She just took the entire bottle herself." Mike's eyes grew big and he smiled and said, "Then why are you crying momma?" It was the relief I had been deeply longing to receive. The following day Louisa took all of her bottles orally. Mike and I tried not to get overly excited because nothing is guaranteed with this child. By day 3 we decided to take our her NG tube and I am thrilled to report she has continued to take all her bottles orally.

Praise you Lord. Forgive me. Forgive my impatience. Forgive my stubborn selfishness. Forgive me for not believing you were holding me the whole time. Forgive me Lord. 

The New Heart

The Progress of Joy

This journey is unreal. I am humbled constantly by the support and encouragement of friends, family, and even strangers. Today I had to take Louisa to her cardiology appointment by myself, which can be a challenge. We had to get an x-ray first and then go to the other side of the hospital campus with the images to our cardiologist. I was feeling a bit anxious about having her by myself but as I waited with her I was offered such grace and mercy by complete strangers. 

This journey has been refining. This child is OUR child there is no doubt in my mind. She is stubborn and strong willed. She is sensitive and sweet (when she wants to be). Her smile is perfectly timed. She recognizes my face and that brings this momma a lot of joy. 

This journey is hard. We have been through the ringer. Louisa has been through the ringer. We had an appointment with a GI doctor last week. The GI doc thought she may have a dairy allergy and we started her on a specialty formula. The first 3 days were bliss. She was less fussy and seemed to tolerate the formula better but then the bliss ended in 2 nights straight of 3 hours of sleep and a screaming baby. I get up so much in the night that we brought her back in our room and she sleeps in the bassinet. Side note: She is 13 lbs 7 oz so she "fits" in the bassinet but barely. Every now and then when she starts to stir I will just see little feet or tiny arms kick high in the air over the bassinet. 

This journey has been promising. Louisa's new heart allows her so much more energy and strength. I believe she is learning quicker too. This picture was taken at one of the thousand doctor appointments we have had and she is SO close to rolling over. We are working on arm strength so hopefully soon she will be moving and grooving. 

This journey has been dark. In the nature of honesty I sometimes feel insecure about her feeding tube. Prior to surgery I had an excuse as to why she refused to eat and now that she still refuses to eat consistently without explanation I have to just accept it. Every time I look at that tube I feel like I am failing my child. Every time I am forced to syringe feed her I feel like I am depriving her of thriving. I recognize this is an issue of pride but I sometimes just can't shake the feeling of failure. I sometimes cry. Sometimes I cry and beg Mike to explain why this journey has been so difficult. I sometimes cry and apologize for not being able to fix any of it. 

This journey is OUR journey. This season is a season. It will not last forever and I have to keep that perspective. This journey is tough sometimes but even in the darkest moments we are given small glimpses of light and hope. 

Thank you for reading this. Thank you for walking through this journey with us. Thank you for praying and thank you for loving us. 

The Day I Cried in Walmart

Last week was a tough week. After leaving UK Children's hospital I came down with strep throat. YEP. Add it to the list of yuck from last week. Mike and my mom took care of Louisa throughout the night(s). I had to wear a mask and run to the doctor before the holiday weekend. I started an antibiotic but still had a 103 degree fever. Saturday I woke up feeling better but then fear set in. My mom was going to have to leave and go back to Iowa. She graciously took an additional week off of work to help us, and let me just reiterate WE NEEDED her. I started to feel sick to my stomach just thinking about not having her help. On Saturday Louisa seemed the same. Very upset. She was pooping so much her bottom was getting very raw, and she was not sleeping. I was still sick, my mom was leaving, and my husband would be gone for minimum 7 hours to meet my brother half way to drop my mom off on Sunday. Saturday night my mom and I prayed over Louisa and we read scripture. On my knees I begged God to give me strength, wisdom, and patience. The Lord is the only one that can heal her. Trying to live in that truth I still couldn't eat because I was sick to my stomach.

Sunday morning my mom got up early with Louisa so that Mike and I could sleep in. The morning felt too fast and I wasn't ready to say good-bye. I held Louisa and looked at my mom, tears filling my eyes and thanked her for being such a huge help. She and Mike left to meet Blake in Mt. Vernon, IL and Louisa took a nice hour long nap. I whispered soft prayers all afternoon and felt a little lighter and a little stronger. I will say I could hardly talk to anyone on Sunday without just bursting into tears. My brother and my dad tried calling me but majority of the conversation was me crying. I was scared. 

Prior to Louisa's heart surgery I had been told by SEVERAL people that the surgery was life-changing. Almost all of them said, "It felt like we brought home a different baby." No one really told me about the recovery process and what to expect because the short recovery was so worth the "new" baby they all experienced after the heart repair. In my moments of fear I wasn't seeing the joy everyone had told me about and I was getting more and more discouraged. My baby wasn't sleeping through the night anymore and she was in severe pain. She wasn't smiling or laughing but she was screaming a lot louder than she had before surgery. Again, I was scared.

My Aunt had told me about a Similac formula that she had just tried on her grandson and thought it might work for Louisa. I called Walmart, made sure it was in stock, and got Louisa in the car and went. Walmart is literally 1 minute away from my house so I said to myself even if she did scream the entire time, it was only 1 minute. However, Louisa didn't scream. She was perfectly content back in her car seat. We walked around Walmart for a bit and I picked up a couple things. It was a Christmas (week late) miracle. I walked up to the check out line and the sweet cashier looked at Louisa and looked at me. 

She then said, "Is she sick?" 

.... my eyes welled with tears. I croaked out, "She is, she had open heart surgery a week and a half ago and things have been really hard." Tears spilled over my eyes and down my face. The cashier's hands covered her mouth and it seemed like she lost her breath. Her eyes grew softer and tears started to form in them. She said, "I am so so sorry. I am so sorry for what she has been through. I am so sorry for what you have been through. I will be praying for you both." I couldn't stop from crying believe me I tried. I wanted to fall to my knees and weep. I wanted to cry loud tears. For the first time I was actually processing what Louisa, Mike and I, and our family had just experienced. That poor cashier did not have a clue what she was actually asking me. Sometimes God uses people to give us the grace we need. Sometimes He uses people you never would expect to help us cope. Sometimes God uses complete strangers to touch our hearts and challenge our perspective. That is the beauty of how God works. I am so weak and so broken. I am so glad He is in control and I am not. 

Thankfulness

The Presidential Election was November 8th, 2016 and the winner was Donald Trump. Regardless of how you feel one way or another I am just thankful I don't have facebook anymore!

People have very strong opinions. Period. That is all. I promise that is all I will say about the Presidential Campaign.

During the election Mike and I started a campaign with "Go Fund Me" for Louisa's medical bills and our upcoming stay at Cincinnati Children's Hospital for her surgery. There are two reasons we decided to do this; 1) Louisa's medical needs have exceeded what we had thought already. 2) I have no more vacation/sick time with my employer and may need to take some unpaid time off.

We started the "Go Fund Me" on Monday November 7th and by Saturday November 12th we had WELL exceeded our goal of $5,000. I am brought to tears when I see who gave. Some of our previous Young Life kids and their families gave. Some of my dearest friends gave. Some gave that we don't even know. If you are reading this and you gave please know that I cannot find the right words to say to express how deeply this has impacted both Mike and myself. We were both floored by the support of our extended 'family'.

Recently I was thinking about the 'Go Fund Me' as well as running the "To Do" list for her heart surgery in my head while feeding Louisa and I was struck with fear. I know in my heart this surgery will be life changing for our family, but it doesn't make the fear of it all any easier. I held my little one close and rocked as tears rolled down my face and landed on her tiny little head. It feels scary. I want to spend every second with her because I am scared. I want to take her pain away so badly. I can't help but be frustrated at times that we are even going through all of this. Sometimes I want to scream and say, "I shouldn't have to make this decision!" "I shouldn't have to buy a box of 100 syringes so that I can feed my baby!" "I shouldn't have to cry after an hour of trying to console my unconsolable little girl." I feel guilty when I lose patience. I feel wrong when I am tired. But all of these things are true. I am tired. I am scared. I am ready for her to feel better. I have cried many nights when I cannot console her and she won't stop screaming because I want so badly to take away her pain. If I could I would remove every ounce of pain from her and put it on myself. It is then I find myself at the foot of the cross. I am reminded of the beautiful story of redemption and how Jesus took all of my and Louisa's pain on himself to die for us.

The past several weeks I have felt a variety of unexplainable feelings; fear, loneliness, failure, joy, hope, and excitement. On Dec. 21 I will get to wake up and (God willing) my daughter's heart will be healed. I get to wake up and we will be on a road to recovery. I get to wake up to a different baby. I can't help but feel guilty because I know not every parent gets this gift. The gift of healing, of hope. Often parents don't even have an option. We have an option. We have a road. I am crying now just thinking of the parents that have to watch their children suffer. I am so sorry. I don't know what to say. My heart hurts for you. Please forgive me for complaining about the short 3 months I have watched my child suffer. I wish, with everything inside of me, that I could fix it.

Someday I will look back at these past 3 months and think.. Wow, how did we survive?
This season of life has been hard on Louisa, as well as, on Mike and me but it is a season. We will wake up and this will be behind us. A part of me never wants to forget this season. I never want to take for granted having a healthy child. I want to remember this feeling so that one day I can be a support for another family experiencing difficulty. I don't want to take for granted what the Lord is doing in my heart during this season. I have been so weak and fragile but so dependent on the Lord and His strength. I am far from perfect, we have bad days, not just Lousia but me as well. It is then that I feel like Job's wife, angry at the Lord. I am not perfect nor do I want to be perfect. I just want to try and be what God is calling me to be and do the best I can.

A Father's letter to his little girl.

Dear Louisa,

I have been meaning to write to you little one. Ever since I learned about you, even while you were still in your mommy’s tummy! I have had so many thoughts and feelings about you. So many thoughts, at times it was easier to ignore them. In 3 weeks, you will be four months old! It feels like so much has happened so very quickly.

I need you to know that daddy loves you very much. But daddy is broken little one, just like your little heart is broken. Except daddy’s broken is different than yours. Daddy is afraid, daddy is nervous about being a daddy to such a special little wonderful girl. Louisa, I hope that someday you can forgive me for being so scared, and for trusting God so little. You can’t even speak yet, and God has used you to speak great truths to Daddy.

Little girl, I found out yesterday that you are going to be having a surgery soon. In 7 weeks, doctors are going to fix your little broken heart. When I found out, I was so afraid! But then I felt something, maybe for the first time. I felt pure joy about you. I was not afraid, I was excited for you and your future. I didn't see limitations for the first time, I saw a gift. You are my little gift Louisa! Then friends, and families, and even strangers started to support your mommy and daddy, but really, they were supporting you little one! They prayed for us, and they gave us money to help fix your heart, and It reminded me that our God is a big God, and a God that cares deeply about all his children. I am so very excited to teach you about our God one day little girl. God has taught me that I do not need to be afraid for you anymore. I do not need to fear what your future may hold. I do not need to feel sorry for you, or for myself. God is in control.

Thank you, precious baby, for teaching me. Daddy loves you so much, and is going to love you and support you and help you to reach your dreams. You are loved little warrior, and you will do great things for Daddy and God’s kingdom. You already have. 

Love of others

Ever since Mike and I were married people have begged us to get pregnant. Working in a High School ministry every one of my girls would tease and plead for us to have a baby. They would chat up about how beautiful they would be and how fun we would be as parents. When we found out Louisa would have Down syndrome a small part of me was scared how our friends would treat us and her.

I know it is silly but I was worried they would be scared to interact with us and with her. I rarely told people because I was afraid they wouldn't know how to talk to us anymore and would slowly distance themselves from us. I could not have been more wrong. Our friends (and their parents.. ha) love on her hard. Our friends just constantly ask about her and are smitten by her. It is a blessing I cannot even describe. We have had friends come help us put her feeding tube in after she has yanked it out and patiently fed her when she was at her worst.
They ask us hard questions about how we are doing and pick us back up after we have had a hard day. Truthfully, we probably don't reach out enough. I have gotten many emails from Christian woman that will write out their prayers and people asking how they can pray. I know it seems so small to them but it is a huge blessing to us. Mike's BSF Men's leadership group took the morning last Saturday and just prayed over our family. I am constantly blown away by support of the community around us. I don't feel like I deserve it but that is God's character shining through His people. Thank you Lord!
People have already gone above and beyond to help our family. We are very blessed by the community the Lord has given us. I truthfully think of our friends as our family because they mean so much to us.

When we found out about Louisa's heart condition a co-worker/friend encouraged me to start a gofundme page. I have been reluctant to do so because it felt strange asking people to help us out financially. Mike and I have tried our best to be responsible with our finances and even though we make mature decisions we were never expecting to have a sick baby. It is actually pretty hilarious now looking back. Mike and I both find much comfort in planning things out, however, things rarely go as we plan. Our journey has been unique but because of our crazy path we have met some pretty amazing people along the way.
Our 'go fund me' page is:
https://www.gofundme.com/mending-louisas-heart
Please do not give out of obligation. Truthfully we need prayer much more than we need money.
Our prayer requests are:
-Louisa would remain healthy for the next 6 weeks
-Louisa would recover quickly and we be able to spend Christmas at home
-Mike and I would have an indescribable peace as we approach her surgery

No one said this would be easy

The glimpse of light

Just when I start to feel the darkness of life overcome me the Lord gives me a glimpse of His mercy and truth. Louisa has started smiling. She knows me and she knows Mike. This picture melts my heart to tears every time I look at it. I want to hold onto this feeling of her smiling for the first time. It is as if God is promising us a bit of relief.  

Louisa has been gaining weight and we couldn't be happier. She is a whopping 9 lbs 15 oz and it is obvious. She is not taking any feeding orally right now but I am trying to let that go and focus on the fact that she is gaining weight and we are one step closer to her surgery. 

These past 3 weeks have been some of the hardest weeks Mike and I have had to face. After we left the UK Children's Hospital our neighbor's 7 week old little girl died of SIDS. It was absolutely heartbreaking. We ached for her and still do. My heart felt so heavy as I hold my precious gift. Ebony came over one night and just sat and held Louisa and cried and we cried and begged God to be near her. As I watched this hurting momma hold my baby I wanted to take all of her pain away.  A week later Ebony brought some of Eden's clothes over to us for Louisa. I couldn't even open the box. I just stared at the box of pain and short lived memories. My heart hurt so bad for them. The next day I went through the clothes and sobbed. I sat staring at my baby weeping. I was reminded of when the Doctor told us Louisa would have Down syndrome. I remembered the ugly feelings that came into our hearts during our time of grieving. I remembered the Doctor asking Mike if we wanted to terminate this baby. I sobbed and sobbed. I felt guilty for not seeing the Gift that Louisa is today. 

A couple days after Eden passed away, one of my colleagues died from a long battle with cancer. I was so sad because our profession would not be the same without Tom. Tom loved the Lord and was such a joy to be near. We went to the funeral and grieved with coworkers as we said good-bye to a legend. 

So things were already pretty rough and then the following week I found out that I may lose my job. 

For six years I have been trying and failing to pass the National Certification Exam for Interpreters called the NIC. Before you get all judge'ie, that I should just accept this fate and move onto a new career, the pass rate is 19.4%. I have struggled to understand why I haven't been able to pass this test when my colleagues and coworkers feel strongly that I should continue to pursue this career. I have questioned myself and my purpose in life more times then I can count. I have cried and ached over this test. I was under the impression that once the NIC Performance Exam was accessible and I would be able to take the test again I would have 5 months to take it. Unfortunately, I was very wrong. Two weeks ago I found out that I have until December 17th, 2016 to take this test. Not only is it time sensitive but my 3-4 month old little girl is going to have open-heart surgery during this period of time. 

To say that I have been feeling overwhelmed in a massive understatement. I feel like I am treading water and people keep holding onto my shoulders and pushing me under. My legs are getting tired. My head is almost completely submerged under water. I can only muster up enough strength to kick hard once to lift my mouth above the water level to breath. I sink deeper and deeper as I lose stamina. 

I have felt broken in the past. I have felt scared. I have felt overwhelmed. However, I have never felt so supported yet so alone. I feel like I am invisible. I have had my times of wrestling with the Lord but this time has felt different. It isn't that I have turned my back on the Lord but I have forgotten that He is good. I convinced myself the darkness is comfortable. I am too tired and weak to wrestle. I am just living, which is more frightening to me than being angry. 

I am ready not just for this season of darkness to pass but to understand what the Lord is teaching me. I don't want to go through all of this and be blind to His movement in our lives. He has taken me to the edge of the cliff before where it feels like everything is impossible and asked me to jump into His arms. The next two months feel impossible but I am too weak to jump. Then Louisa smiles and Mike holds me tight and I am reminded that the Lord has already been carrying me. I don't have to jump, I just have to hold tight while I am carried on His back. This is the glimpse of God's grace. God never promised me my life would be easier when I accepted Jesus into my heart. God did promise He would never leave or abandon me and that is the promise I need to remember when this gets too hard. 

The Roller Coaster that is Louisa

Children's Hospital

Last Thursday my mother-in-law came to Lexington to help us out with Louisa. I could tell that morning that Louisa would have a rough day, she wouldn't really eat for me that morning. I started to become anxious because these characteristics appeared when we first struggled with 'silent reflux'. I said good-bye to the babe and my Mother-in-law, Dianna, and went to work. I cried on the way there and continued to tear up every time I looked at Louisa's picture in my office. Something didn't feel right. I felt like something was wrong. I text Dianna and asked how she was eating and she said Louisa hadn't really taken much but she would try again. Later that morning I asked again how things were going and Dianna told me the same thing. My insides started to shake. Something is wrong. I know something is wrong. I cried hard at work and called my co-worker and told her what was going on. Amy Holt, my co-worker, is such a special and dear friend to me. I am so blessed to work with her. 

Amy told me to go on home but I didn't want Dianna to think I didn't trust her. Dianna is a dream. She is a great 'grammy' and loves that little girl so hard. I am so thankful for her. I didn't want her to think she wasn't capable of caring for Louisa. So, I waited. I tried to distract myself with work and I waited. When I arrived home I found Dianna crying in Louisa's nursery with baby girl on her lap. "She won't eat. I tried and she just won't do it." I fell to my knees and just sobbed. I was so confident we had overcome the lack of eating. I was so sure we were turning a corner and she would start gaining weight but she didn't eat and she wasn't gaining weight. I cried hard. I held my baby in my arms close to my chest and I sobbed. Dianna came to the floor and wrapped her arms around me and cried too. I was so scared. Dianna was scared. 

I stayed home from work Friday to help out with Louisa and monitor her throughout the day to see if she was getting any better. Eating was still a struggle. She would suck hard for an ounce and then she would start crying and arching her back. She would want to eat but couldn't, it is literally the saddest thing to watch your child starve. That night Mikey and I went out to dinner and tried to have a date night. We had much needed conversation and intentional time together. Throughout that night into Saturday morning I tried feeding her and we were in the same boat. Drink one ounce and then cry. I asked Mikey to call the pediatrician and all four of us went to Dr.Warner's office. We joked once Mikey got off the phone with the receptionist. I am sure she yelled back to Dr. Warner and his nurse, "The Riley's are coming again." Dr. Warner is wonderful and truly he cares deeply for Louisa. He worries about her and makes sure that we see him at least once a week. When we arrived she had lost another ounce. I had a feeling that would happen so I didn't panic. Then, the hard conversation happened. Dr. Warner said we needed to go to the hospital. I felt my heart in my throat. We would have to go to UK Children's hospital where she could be seen by a G.I. doctor and get a feeding tube inserted. I only cried a little in front of the doctor. Milestones... am I right..

We arrived at UK Children's hospital a little on edge. Our good friends had just shared with us a very awful experience they had with UK children's hospital. I tried to be optimistic and let our experience be a new one. Our nurse was wonderful and we were all settled in. The resident on call came in to talk to us and mentioned they wanted to monitor her for 48 hours before they do anything. This was not going to work for us. I monitor her at home. I didn't come in to the hospital because I am delusional I know there is something wrong and things need to start happening immediately. The resident said she would relay our stern message to the other doctors and we would most likely be visited by Dr. Cotrill the next morning. The first night was awful. Nurses and techs are in and out so much that once you get Louisa to sleep she is woken up by the extremely loud door to our room. The sleeping arrangements weren't horrible. Louisa was connected to a monitor for her Heart rate, oxygen level, and blood pressure and it was going off every 5-10 minutes so Mike got up and unplugged the machine. It is a wonder they didn't boot us out of there. 

The next morning Dr. Cotrill came into see Louisa and to talk to us about the game plan. She originally wanted Louisa to be monitored for 48 hours and then possibly have a feeding tube inserted. I cried and asked that we go ahead and put the feeding tube in. Things were not going to change and I knew that. A feeding tube is not what I had envisioned for our little girl but there are a lot of things I didn't envision that we have had to deal with...moving on. Dr. Cotrill was comfortable with our plan and gave the go-ahead to the doctors there at the hospital. Sunday afternoon the nurses and techs came in to insert the tube. The nurse showed us what to do in case it came out. I sobbed while they were putting it in. The tube was in place and we began feeding her with the bottle and then whatever remained we would put through the tube. Mike went home Sunday night to sleep and I stayed in the hospital and learned how to use the overnight pump. 

This is the sweetest picture of Dr. Cotrill and Louisa. She really is an amazing woman.

We were discharged yesterday at 6:00p. The doctors were happy with the success of the feeding tube and we were ready to come home. The only plan we have right now is fatten this baby up. We will see our doctors next week and get more of a plan in place once she starts gaining. 

Back to work Blues

Back to work blues

Often people asked me if I was struggling with Postpartum depression. I think it is a fairly common question and I can't blame people for asking... I have been a bit on edge but that isn't new. I like to describe my anxiety as if I were a squirrel that is constantly moving and scanning their surroundings. My brain is constantly going. It can be paralyzing.  After some intentional prayer I realized I wasn't struggling with postpartum but I was struggling to really give my fear over to the Lord. When you become a parent you instantly want to protect your child from every illness, cut, stick with a needle, and pinch of the car seat. It became very easy for me to get caught up in how much weight Louisa was gaining. I have become obsessed with her weight and making sure she is eating every meal. I believe they have a name for parents like me, "helicopter parent" is that right? 

I know I sound crazy but let's face it, I have a touch of crazy in my bones, I am okay with it. The truth is I was scared to come back to work. I was scared that once I came back to work Louisa would stop eating and start losing weight. I was scared we would have to get her on a feeding tube. I know a feeding tube is not the end of the world, but it feels a little like failing in my heart. I don't want it to, but it does. I desire with everything inside me for Louisa to fight and fight hard for her life and herself. I am telling you if I could drink a bottle for her I would. I find myself every time I feed her sucking on the inside of my mouth... seriously... I know... it is bad...but every first time mom is like that right?...right??

I came back to work last Monday. It was a sad day when I dropped Louisa off with Elise but she could not be in better care. Elise Holuta is truly a gem. She is everything I am not. She is calm and sweet and soft spoken and rational. Very rational. She doesn't get bogged down with the little things. She loves the Lord and cares about Louisa. She has a son James who is wonderful and smiles and laughs at me. Elise has agreed to watch Louisa. Right now Elise is watching her 3 days a week so we can transition slowly. I don't want to overwhelm Elise because James is only a month older than Louisa. Two babies and she doesn't even bat an eye. Mike said he walked in last week to pick up Louisa and both babies were sleeping next to her on the couch. He calls her the 'baby whisperer'. I value her friendship so much. I am so grateful Louisa is with her.

After leaving Louisa with Elise for 3 days I felt a weight lifted off my shoulders. God is taking care of all of the details. God is in control of Louisa's life and I have the opportunity to watch Him move. I don't want to miss out on what he is doing through her because I am constantly stressed out. Yes things are still overwhelming trying to pack 5-6 bags every morning. Seriously, I thought I was a bag lady before but after having a child I am at an entirely new level of bag lady. Yes my mind wonders off into the world of Louisa and wondering if she is crying or sleeping or eating but ultimately I am happy to continue working. I love my job and I feel like God has placed me in this position right now for a reason. I would love to stay home with my sweet little girl and hold her for hours but right now that isn't where I feel God calling me. Some day in the future He may call me to stay home and play a completely different role but right now He is asking me to trust Him and continue as an Interpreter. 

 My favorite parts of the day are holding her first thing in the morning and right before she goes to bed at night. She snuggles me and places her face right in the crook of my neck. She only wants to feel skin. When she is trying to snuggle she does not want hair or clothes to be in the way of her face and her mommas chest. I love when she stares at me with her big almond shaped eyes. I love changing her clothes and watching her kick her legs and stretch out her arms. These are the moments I don't want to lose because of stress. I want to breathe in these moments with her. I don't want to get fogged with worry but I want to see this baby how the Lord sees her...perfect. 

The other day I was worrying about something as I so often do and I remember thinking, "God probably wants to punch me in the face." Not lying.. that is exactly what I thought and then I immediately thought, "that is the craziest part, He doesn't want to, He loves this mess of a woman I am." I am not justifying the fact that I have crazy anxiety and often don't release my fears to the Lord but even in the moments that I hold tight to the fragile He still holds me in His stable hands. Even though I am so weak God still uses me. God still looks at me through the lens of Jesus and calls me His child. He looks at Louisa that way and He looks at you that way. I pray that you experience God's unconditional love. I pray that if you have never experienced unconditional love, that God will change your life with the unconditional love He pours out on His people. I pray that we all can breathe in the moments with the ones we love here and now.

Dark Journey

The Struggle is Real

Wow. Being a parent is the most humbling experience. I have had so many moments of leaning HARD into the Lord's presence. Louisa's thrush has cleared up, however, she still wouldn't eat. Feeding her became some my weakest moments. She would struggle and pull away from the bottle after only taking 10 ml. She would cry and I would cry. She would be so hungry, fussy, and still refuse to eat. I started to become more and more anxious over this of course. 

My entire life I have struggled with anxiety. Not just a worry or nervousness but mind paralyzing anxiety. It will come over me and I start to lose all sense of reason. I am ridden with fear and just cannot function. This started happening with Louisa's feedings. I dreaded them. I would start to shake and overcome with fear that she wouldn't eat. I only let this go for two days and on the third day of her not eating during the day and then screaming all evening I finally called her pediatrician. We brought her in and that is when he found the thrush. I thought once we got the medicine for that she would eat and I would have my baby back.

She didn't eat. Her eating actually got worse. I cried and cried. My husband thought I was going to shut down. On the third day of her struggling to eat I once again called the pediatrician and took her in. She had lost an ounce in two days! My heart sank. The doctor believed she had gas pains and that is why she wasn't eating. That could have been the case for that moment in particular but in my heart I knew that wasn't it. There was something bigger. 

Monday morning I called her cardiologist. I, of course in all my mom glory, sobbed and said, "she won't eat. She is so hungry but won't eat." Dr. Cottrill said, "Okay, we will figure this out together." Dr. Cottrill thought it might be reflux. We started her on a medication two days ago and I already feel like I see a difference. Last night she cried and cried because she was hungry and every time I offered her more to eat she drank every bit of it. I am hoping and praying this is the solution to our eating strike.  

I am so humbled by the Lord. Honestly, when I was pregnant I just kept saying, "I won't need any help. I will just figure it out." Oh I was so wrong. I needed a lot of help and thanks to my Mom and my Mother-in-Law I have had the BEST help out there. The Lord has truly blessed our time together and I cannot be more grateful. 

Home

Homebound

I apologize for the delay in posting. These past three weeks have been overwhelming. I need to apologize to all the mothers I have ever offended by saying, "Don't you get bored when you stay at home?" Oh if all of those preciously patient women could see me now. I am a mess. I am lucky to shower at noon when Mike gets home for lunch. It seems like if I am not feeding her or pumping I am holding her because she is fussy. I feel that a 'routine' is nowhere in sight. 

When Louisa came home from the NICU, Mike had to go back to work so I was parenting solo and there were lots of tears. In the NICU Louisa nursed like a champ. She would eat and nurse every time I was there. When I brought Louisa home, she would not nurse and would hardly take her supplement from the bottle. As I stated before, there were lots of tears. Many of my close friends have given me all kinds of perspectives when it comes to nursing and even with all of that prep I still feel like a failure.

I was told by a couple of our doctors that babies with Downs often don't nurse well, however, because I have pride issues I refused to accept that fate. When Mike and I found out we would have a little girl with Down syndrome I remember thinking to myself, 'she is going to be exceptional'. There is a lot I need to learn about Down syndrome but what I have already found out from other parents is that every single child is different. Crazy right... kind of like children that don't have Downs. Your first child will most likely be different from your second and you are different from your spouse. I assure you I am not living in a place of unrealistic expectations but I also don't want to lessen her opportunities because I choose to categorize her a certain way.


I promised myself I would not stress about her not nursing and I am going to continue to try everyday to nurse her during one of her feedings. Once Louisa went to only nursing once a day I started to exclusively pump which is a load to bare. 

We went to our first doctor appointment last week and little girl lost weight. This shouldn't have surprised me because she wasn't nursing well, but in true Momma Hilary fashion I had to cry just a little. We saw a lactation consultant who changed our feedings and today when we went to the heart doctor she gained all her weight back AND some! 

I may sound old when saying this but I am amazed by the medical technology that is available! I mean seriously. Phillips has created these tiny EKG stickers that are placed on baby and they BAM an accurate EKG is done in 15-20 seconds. Our heart doctor is Dr. Cottrill, a 71 year old WONDER woman. I promise you cannot say her name to anyone in the medical field without them absolutely RAVING about her. When you walk into her office there are 5 walls FILLED with pictures of little patients she has seen over the years. She has written articles and articles have been written about her. Dr. Cottrill is truly a blessing. I know she has been told that for years but I pray she feels the Lords presence in her work. 

Louisa's oxygen level was 94% and Dr. Cottrill said she doesn't really hear her laboring to breathe. All of this is precious words to my heart because we were told her breathing would be labored and she wouldn't have a lot of energy to eat, but little girl has abolished both of those expectations. We will keep you posted and continue to share updates of our sweet girl. Thank you to ALL of you who have been praying for her. I feel your prayers and I am truly so grateful for them.

It's Official We are Parents!

She arrived!!

Louisa Jean Riley arrived to us on July 25th at 5:28pm. She weighted 7lbs 5 oz and was 19 3/4" long/ I will spare you the details of birth, although I now understand why Moms will share their story it is pretty fascinating.  I mean think about how many months have lead up to this marathon moment. It is rough but amazing. I will be honest I did not enjoy being pregnant but I do understand why moms will promise to never get pregnant again and then immediately after the birth we forget the last 9 months. 

Once Louisa took her first breathe and started crying everything in my body relaxed. She was here and her heart handled labor/deliver just fine. Mike and I decided prior to her arrival that if she needed to go to the NICU, Mike would go with Louisa and my mom would come stay with me. The NICU nurses were in the room and ran their initial tests on baby. They decided she would need to go to the NICU to do further testing. I held my little girl for probably 20 seconds and just cried and cried. I was so grateful she was here and was safe. I didn't want to let her go. It hurt my heart to give her back to the nurses. 

Often moms will talk to me about their hearts overflowing and bursting with love and joy for their baby and to be honest I didn't feel that way right when she was born. I loved her of course but I think because she was taken away so quickly that I didn't get the chance to really enjoy her. Then my mom walked in the room and the tears wouldn't stop. I was feeling so many things that I couldn't express except through tears. It was confirmed that Louisa had Downs, I just had a baby, I wanted my husband to be next to me, and I wanted my mom. My mom cried too, she was very nervous and glad everyone was okay. 

Once I recovered from the Epidural I wanted nothing more than to go to the NICU to see my little girl. The moment I was wheeled into her NICU room tears streamed down my face. I loved her. I am her momma and she is my baby girl. I held her close to my heart and just cried happy tears with Mike crying next to me. Mike and I were both exhausted and starving so we then went back down to our room where Mike's parents and my parent's were waiting for us. We all cried joyful tears together and then Mike and I inhaled a cold chicken meal. 

That night Mike and I went up to the NICU at 1:00a and 4:00a to hold and feed our precious baby. We were a bit delusional and I was extremely swollen but it was in this room that we would find ourselves for the next 8 days. The day I was discharged I sobbed. I didn't want to leave Louisa at the hospital. Everyone kept telling me it was for the best and I believed them but it didn't make it any easier to leave her there. Even though it was extremely painful to leave her there I will say the one sense of comfort I found was that every single one of her nurses in the NICU at Central Baptist were the most amazing people I have ever met. I am pretty sure they loved her as much as I do. They spoke so gently to her and cared for her so deeply. It didn't feel like she was just a patient to them. If you ever find yourself in a similar situation I pray with my whole heart that you have the same experience as we did in the NICU. 

Tomorrow I will post more about the NICU and why little girl was there for 8 days and our first 24 hours at home.