Tuesday, October 04, 2016

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. 

Tuesday, September 27, 2016

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.

Thursday, September 01, 2016

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. 

Thursday, August 18, 2016



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.

Thursday, August 04, 2016

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.  

Monday, July 25, 2016

Louisa's biggest day yet.

Life seemed very still and simple last night. We got the house ready, walked the dog, went out to eat, prayed, and went home to pack up the car. It was a surreal feeling seeing a car seat in the back of the Mazda. I think it is officially official when you see that darn car seat. From my perspective (husband/soon-to-be-daddy) I felt a very real and tangible sense of peace. Something I have not had much of through most of this pregnancy. More than anything I was and am so excited to meet my little girl. I mean pumped! I want to touch her little fingers, I want to feel her little breath on my cheek. I want to start to learn who this little one is and fall even more deeply in love than I already am with her.

I am so proud of my baby girls. I have called Hilary my "baby girl," very affectionately for as long as I can remember. And I am proud of my actual baby girl, who is actually my baby girl. 

- I am proud of Hilary, because we got to the hospital last night at 9:00pm, and she quickly got induced. This woman had very minimal sleep, and a whole lot of contractions all through the night. The above picture was taken at 11:11PM Sunday, July 24th. She took it like a friggin champ. It is 9:00am now, Monday, July 25th and she is 7cm dilated. She had the epidural roughly an hour ago, water is broke, and contractions are regular! I am blown away by her strength. I have a pathetic pain tolerance, Hil seems to have an endless one.

- I am proud of my actual baby girl because she has behaved wonderfully in utero ever since we got to the hospital last night. Her heart has stayed strong, and she is positioned quite well. She is ready to 
meet the world! 

I have been trying to use my knowledge of my wife to best serve her. I know she is crazy about brushing her teeth and washing her face. I know her face well. When the nurse asked if everything was fine, and people-pleasing Hilary said yes, but her face said no. I quickly stepped in. We are going to make darn good parents. This is way more exciting than I had thought it was going to be. 

That is all I have for now. Hopefully the next post will have beautiful pictures of little Louisa!!!

Friday, July 22, 2016

39 weeks.. The final days

If I don't laugh I will cry

If you have experienced pregnancy yourself or have a sister, sister-in-law, friend, best friend, co-worker, cousin, someone you have done life with, you know hormones play a huge role in pregnancy.

Mine are all over the place.
When I go out to ANY store this is how I feel:
And then the moment I begin talking about having our daughter this happens:

 My poor husband has walked into our bedroom when I am crying and he will just look at me and say, "Hilary, why are you crying." Sadly, I just say, "I don't know. I don't even think there is a reason I am crying." - Spoken like a true crazy person!

 I am nervous/excited/terrified/ready/not ready/hopeful all wrapped into one crazy woman. The heat does not help not emotional state either. It has been over 90 degrees here in Lexington for the past two days and tomorrow is supposed to be worse. I had to move my watch latch down another hole... I am holding water in my wrist... HOW? I would say most the time I feel like this though:
We are so close to holding our little babe in our arms that I can hardly stand it. We went to the doctor yesterday and my cervix is still closed so we will be induced on Sunday night and hopefully have her Monday at some point. I am going to get a manicure and pedicure this evening and I am so looking forward to just relaxing and soaking it in. #TreatYoSelf. Tomorrow I will be in a pool 70% of the day because that is the only exercise I can do outside without passing out.

Prayer requests:
- Prayer for sleep the next two days
- Prayer for labor to go smoothly

Tuesday, July 19, 2016

Learning to grieve

How I have learned to grieve.

This post is meant to be encouraging but very raw and real. I want to share our experience of grieving, however, I want it to be as authentic as possible. This post is meant to serve those that are currently grieving their expectations or have grieved their expectations in some form or fashion. 

Mike and I believe authenticity is extremely important as Christians. We do not want people to think we have it altogether and are perfect. Again, a quote from one of my favorite woman:
Every time something difficult has come up or I have had to let go of unmet expectations I have tried to understand grieving. Six years ago my grandfather killed himself at age 69 leaving an already dysfunctional family a state of total ruin. My walk with the Lord was strong but this shook me to my core. I remember asking God to teach me how to grieve correctly. I did not want to rush the process or put on a brave face for the world. I wanted to grieve the way that God shows us to grieve in the bible not the way the world desires for me to grieve. I didn't want to rush my grief and make others feel comfortable by pretending to be happy again. I wanted to be sad and cry and be alone. At my grandfathers funeral we sang the hymn It is well with my soul. To this day I still am unable to sing that song without choking up tears that stream down my face. I don't think it is just because it was sung at his funeral but because I am not ready to say It is well with my soul.

Once we found out about our sweet baby girl, Louisa, I started to grieve my expectations. They didn't flood my heart all at once but they came in waves. I had written a letter to my daughter during this pregnancy that I would give to her on her wedding day. My heart ached because I couldn't picture our baby. I had dreams of her but I never saw her face. Would she swim on a swim team? Would she excel in school? Would she be able to go to a mainstream classroom? I was also very sad and very scared that my little girl would need open heart surgery. I pictured this little tiny body on an operating table. They are going to have to cut into her tiny body to repair her tiny heart. My soul was not well, my soul was overwhelmed with sadness, with devastation.

I have started reading Crabb, L.(2001) Shattered Dreams: God's unexpected Path to Joy. This book was recommended to us by a pastor from our church. I have found it to be extremely encouraging. This book has allowed me to breath and live in the discomfort of pain. Crabb asked the reader to read through Ruth and focus on Naomi and her suffering. Naomi did not apologize for her grief and pain, not only that, but she said in Ruth 1:20-21 "Don't call me Naomi," she told them. "Call me Mara, because the Almighty has made my life very bitter. I went away full, but the Lord has brought me back empty. Why call me Naomi? The Lord has afflicted me; the Almighty has brought misfortune upon me." She was devastated. I am sure people did not want to be around her because of her honesty. Naomi did not try to put up a front and be someone she was not. Naomi was emotional and her heart was in pain. She was in a state of darkness.

World's misconception of grief

Crabb talks about two unwritten rules that surface in our response to one who hurts. First, mourning has a time limit. Second, we think there is a proper way to mourn. Ugly battles should remain out of sight. Acceptable battles may be shared, but only if we season our account with hope.

During this time of grief Mike would say to me and others, "we are going to choose to glorify the Lord in this situation." I remember thinking, I want that, I want that so badly, but I don't feel that. I don't want it to be her. Why does God have to use our innocent child at the expense of others? Why can't he give me cancer instead? It hurts my heart to hear those words now but they are truly what I felt. I tried bargaining with God begging him to take this away from her and giving it to me. I will do anything if you just protect her from this Lord. Mike and I also shared with each other openly about some of the dark and ugly thoughts we had experienced. We confessed to one another the anger and bitterness we were rebuking on this sinful world. We talked through God's redemptive mercy and admitted worship felt too heavy to pick up. Grief may not seem beautiful especially when you are experiencing the callous pain but I believe with my whole heart it is necessary.

One night Mike and I watched the movie Risen. I saw the roman soldier transform from hard hearted to accepting. My heart ached because I knew I was taking for granted what God was doing in our lives but I could not shake the pain of our little girl having Down syndrome. I tried to distract myself by folding laundry. I was in Louisa's nursery folding her clothes bellowing out cries. Our dog sat next to me just staring. My husband found me manically weeping. There was his wife, broken on the floor crying out to God to FIX this. Take this away. I don't want her to have Downs. Why her God? Why?  I craved the answer. I was demanding an answer. Mike just sat with me tears falling down his creeks. He tried to make it better but he needed arms wrapped around him too.

What Jesus teaches about pain

Later in the book Crabb says. "Jesus' teaching might be summarized this way. When you hurt, hurt. Hurt openly in the presence of God. Hurt openly in the presence of the few who provide you with safe community. Feel your pain. Regard brokenness as an opportunity, as the chance to discover a desire that no brokenness can eliminate but that only brokenness reveals." Then Crabb states "For Jesus, the answer to suffering is to suffer intensely, to risk feeling so bad and then walk through that pain-through prayer, the Word, spiritual disciplines, and community-toward the center of your soul where above all else you desire God."

This is where I desire to live. Pain is pain. You do not need to apologize for feeling heavy, burdened, forsaken, alone, and undesired. The world may not be ready to receive your weakened soul but God is ready to receive you. I pray with everything inside me that if you are experiencing this kind of pain, if you desire to be called 'Mara' instead of your name, God sends someone to live in these moments with you. 

 I am so grateful I went through this with my husband. Mike can be so strong even in oppressive darkness. He is a fighter and puts the Lord first in our marriage. God put him in my life so I could experience what unconditional love looks like. When I am falling apart he carries me on his back. He would breathe for me if he could. If our daughter is even half of him she will be the most amazing person.

I pray that one day you will breathe life again. I pray you seek comfort in the Word and stories God has given us because he is a merciful and sensitive God. I pray that even when Satan is trying to convince you to find hope in something fragile that you would remind yourself of God's truth. I pray that someday It will be well in your soul.

Matthew 5: 3-11

"Blessed are the poor in spirit, for theirs is the kingdom of heaven. 
Blessed are those who mourn, for they will be comforted. 
Blessed are the meek, for they will inherit the earth. 
Blessed are those who hunger and thirst for righteousness, for they will be filled. 
Blessed are the merciful, for they will be shown mercy. 
Blessed are the pure in heart, for they will see God. 
Blessed are the peacemakers, for they will be called children of God.
Blessed are those who are persecuted because of righteousness, for theirs is the kingdom of heaven. Blessed are you when people insult you, persecute you and falsely say all kinds of evil again you because of me. Rejoice and be glad, because great is your reward in heaven, for in the same way they persecuted the prophets who were before you."


Monday, July 18, 2016

38 Weeks Pregnant

Last week of pregnancy

Currently we are 38 weeks and 4 days and boy are we dropping. There are perks to this because I can actually breath again, however, the downside is that my clothes are starting to not fit. My belly is starting to peek out the bottom a little. This makes it truly difficult for a lady. The once treasured task of getting dressed in the mornings for work now it is probably the most daunting. Dress clothes are not comfortable and wearing shorts or pajamas in my profession is frowned upon.  

People have warned us about the last two weeks of pregnancy and I heard them but in true Riley fashion I thought, oh it won't be that bad. It is that bad. I have been nesting for several weeks and there just isn't much left to do. We just have to wait... and wait... and wait. I was given a bit of relief from swelling the past weekend by getting into a nice cool pool. The temperature is rising and the humidity is almost unbearable. I am swollen all over. My husband has made me feel like the most beautiful person in the world during pregnancy. He isn't good at faking things so I know he truly sees something I don't and I am so grateful. My eyes see a swollen face that doesn't look like mine. Legs that are weak, large, and desperate to be worked out. He sees... I don't know what he sees, but I do know that he makes me feel beautiful and wanted.

Last night I was tossing and turning from 3am until about 6:00am. I believe it was a mixture between a stomach ache and nerves. I cannot complain about sleep because truly my sleeping patterns haven't changed all that much. Although most of the times I do get up to pee in the middle of the night I keep my eyes closed and convince myself that I am still sleeping so that once my head hits the pillow I am immediately out again. I do not function well on little sleep. I know, I know, I won't get hardly any sleep when she comes home but I also won't have to function on a high level. Yes I will need to function to take care of my daughter but interpreting a presentation of State Government policies and laws won't be in my daily job duties so I think I can manage.

We have labor/delivery plan, unless Louisa decides to come early, we will go to the hospital Sunday July 24th at 9:00p to be induced. Mike and I both are a bit nervous about being induced. If you are seeking prayer requests we have a couple:
-Pray for my body to go naturally into labor
-Prayer for both of our families travels here once she arrives
-Prayer for rest (for both Mike and myself)

Thank you all for taking the time to read this blog. It is a very special thing for me and I am excited to begin this journey with you.

Friday, July 08, 2016

I thought I was ready-Diagnosis

I thought I was ready to share our diagnosis story with you all, however, I find myself holding our story close to my heart. I try to convince myself that people aren't ready to hear what I have to say but I think the reality is... I am not completely sure I am ready to be that vulnerable. With prayer and courage I am going to try.

 One of my favorite woman phrases it this way:

I am willing to take a risk for the sake of connection. If this touches just one woman/man/soon-to-be-mother/soon-to-be-father/grandparent/sibling I am willing to put myself and my family out there.

When I got pregnant it felt like a whirlwind. We only had to try once and boom we were pregnant. I had morning sickness and I started eating the greasiest food I could buy. I started gaining weight and hated being pregnant. I actually hated when people asked me about being pregnant more than the side effects. I have major self-esteem issues and when my body started to change so much I couldn’t keep up and wanted it to be over. I found myself wishing away the pregnancy and counting down I would have my body back. All of that changed at our 20 week appointment. We found out we were having a little girl. On one hand I was so excited we were having a girl and then on the other I was terrified of how to raise a little girl. Mike was in love. Goo-goo eyes pressed on the ultrasound as tears filled his eyes. He loved our baby girl in an instant. I remember I didn’t want the ultrasound to end, I wanted to see her. I wanted to see how she moved and her little hands. Mike had to rush back to work immediately after the ultrasound. I had to return to our OBGYN’s office to discuss the ultrasound and then I was headed home because it was my day off. I was overwhelmed with excitement of the news we were having a girl. I could not wait to tell our families and live in the joy of their reactions.

My doctor came in to the room excited and funny as always. She talked to me about our baby girl but mentioned they saw a calcium deposit on her heart. She explained we would need to get a Diagnostic ultrasound done at our next appointment. Dr. Ashmun repeated over and over, “Do not worry. Please do not lose sleep over this. Often when Calcium shows up on the ultrasound it clears up before the baby is born.” I wholeheartedly trusted my doctor and did not worry about the calcium. Once I left the doctor’s office I called Mike and explained what Dr. Ashmun said and he started throwing questions at me like a batting practice machine. I assured him over and over that is was nothing and we need not worry about it. Once I got to work I even sent him several links of other people’s experience with the calcium deposit. That night we told our parents about our little girl. My mom, in all her excitement, screamed over the phone.  My mom doesn’t get excited about many things, but us having a little girl made her heart leap with joy. My dad’s response was, “A little Sis” and he started crying. My parents have called me Sis since I was a little girl and I am sure they will call our little one the same thing.

I began feeling more connected to the baby that was growing in my belly. I didn’t feel like she was a foreign object anymore. She was a SHE and we could name her and she would be half of me and half of Mike. We lived blissfully in the next 4 weeks. I finally started to love the idea of being a mom. I longed to hold our baby. Mike and I started discussing names and we were down to three; Aurora, Louisa, and Eloise. After days of going back and forth with names Mike finally agreed to Louisa Jean Riley. My baby’s name is Louisa. I imagined our life over the years and the nicknames we would call her. I smiled every time I thought about her growing up with Mike and me as her parents. I imagined her having dark hair and dark eyes like we have. Unless she comes out with red hair, she has no hope for any other eye and hair color. 

I started getting bigger and my clothes became tighter and tighter. I worked out as much as I could manage and tried to eat better than I had been. Mike and I forgot about the calcium deposit and the diagnostic appointment until a couple days before our appointment. We were living in the presence of joy for our little one. The morning of April 11th Mike and I were running late. I don’t think we had shown up to an appointment on time once during this pregnancy. After waiting for an hour and a half I was finally called back and the nurse asked me questions, without Mike in the room, and then she called Mike back and we went into the ultrasound room. I was impatient and annoyed with the amount of time we had to wait, little did I know what was to come. 

We got to see our baby girl again. She was beautiful and looked huge to me on the screen, although she only weighs 1.5 pounds at that point. I imagined myself pushing this human out of my body and shivered. The nurse was very kind and took lots of pictures. The Doctor entered the room and he was kind but seemed distracted. He sat down next to the nurse and asked me a couple questions. He then asked the nurse to zoom in on a couple places of her body. One of those places was her heart. The doctor then said a bunch of words that seem like blurs now. Through the medical jargon I heard him say she has a Heart Defect and it will require open heart surgery. Hot tears filled my eyes. There must be a mistake, I couldn't have heard him right, but just then Mike started asking questions. I did hear him correctly, Louisa will need open heart surgery. 

I am so thankful for my husband because when hard news hits him he can still sort through his thoughts. The Doctor explained again that she has an Atrioventricular Canal Defect. We will have to monitor the severity of the hole and we would need to schedule an appointment with a Pediatric Cardiologist.

I could not control the tears anymore. My heart sank deep into my stomach. I began questioning things I had done as a pregnant woman. What if I took too hot of showers? What if I eat too much fish? What if it is because I forget my prenatal vitamins sometimes? Just then, the Doctor broke my trance and looked at me in the eyes and said, “There is nothing you have done to cause this. Sometimes this just happens.” I began to weep. Mike was holding me close and I felt like I couldn’t breathe, what have I done? I felt heavy. The doctor then told us several times we needed to have blood work done to test for Down syndrome. We agreed to get the bloodwork done downstairs and then head over to our OBGYN. Our blood test was called the Harmony; Dr. Mulligan said it is a 95% accuracy rate for testing Down syndrome.

We arrived at Dr. Ashmun’s office (OBGYN) and I felt like a glaze lay across my face. Mike and I both were just still and silent. I cried and he held me close. When he looked at me it felt like he was saying, “I don’t know what to do, but I am here.” I loved him and I loved our little baby. I didn’t want her to be broken or wounded. I wanted her to be healthy and safe. Dr. Ashmun arrived to us and talked a little more about the findings from Dr. Mulligan and she said we were in good hands with the Cardiologist we would be seeing the next day. Dr. Ashmun wrote down her cell phone number and made us promise that if we weren’t sleeping and couldn’t turn the worry off that we were to call her. She has three boys, there is no way I am going to call her in the middle of the night, and she is a doctor for goodness sake. I am still thankful for her though. She didn't have to open herself up but she did and I am so grateful she did.

Mike had to go back to work and I was off so I went home and waited for my mom to call me. When she did I could hardly say the words without forcing them out of my chest. I sobbed and tried to catch my breathe. My mom cried and listened. She asked if she needed to come to Lexington to be with us which was sweet but there was nothing she could do to make it better even though I know she wanted too.

My mom suggested I go on a walk or something to get out of the house but I couldn’t move from the couch. I was scared to move, scared to do anything. I didn’t want to hurt Louisa. I laid there on the couch and cried. Our puppy, Jackson, lay next to me on the floor. My heart felt heavy but numb. I cried every time I looked at our dog. I cried every time I thought about our little newborn having open heart surgery. I cried when I looked at my husband. I cried when I looked at Louisa’s room.

Tuesday April 12th Mike and I met at the Pediatric Cardiology department. For the first time in the entire pregnancy we were both early to this appointment.  I felt pale and like I couldn’t possibly cry another tear. Mike looked like he was holding it together on the outside but I knew his mind was going round and round. We were called back into the room where we met our Cardiologist. Her name is Dr. Cottrill. She is 71 and in a wheelchair due to a spinal disease. She explained exactly what she would be doing and began asking me questions. My mind was foggy and I couldn’t think clearly but I tried to answer the questions as clear as possible. 

The ultrasound tech nurse was sweet and laughed every time Louisa turned around and tried to hide from the ultrasound wand in my belly. Dr.Cottrill said she would be a dancer. Our little pea, apparently, doesn't like ultrasounds. I laid there with tears streaming down my face. I wanted to be the one sick not her. I was scared and angry. Mike came close to me and held my hand tightly. We watched the monitor closely as if we knew what they were looking at. Louisa’s heart was smaller than the size of a nickel truly I was amazed they could even see anything. 

Once the ultrasound was done Mike and I sat patiently together ready to fire questions at Dr. Cottrill. She told us basically the same information that Dr. Mulligan told us the day before. Dr. Cottrill is a Christian and it was very obvious she was passionate about her work. She gave Louisa her first book, which was a Congenital Heart Defect book, not what I had in mind for a first book but HEY, dreams…Am I right?

Dr. Cottrill explained the Atrioventricular Canal Defect is a way Mike and I could understand. If our little one was going to have a heart problem the AV Canal Defect would be the one we would want. The repair for this type of defect is successful and surgeons have been performing the repairs for over 50 years. We asked our questions and she patiently answered each one. At one point Mike said, “What if she does have Down Syndrome?” Dr. Cottrill’s reply was, “then you will love that baby and be her biggest advocate.” 

That night Mike and I sat on the couch together and just stared at each other in silence. We were both exhausted from crying and thinking. We eventually fell asleep for several hours and both woke up still feeling really heavy. Our good friend Lauren Greenman stopped by with flowers, listening ears, and kind words. Lauren is studying to be a Physician’s Assistant. She and her husband have been great friends of ours for 3 years. Something Lauren said that night that struck both Mike and me was, “A lot of things have to go right during pregnancy to have a healthy baby.” We were both taken back. No one had said that, but it was true. Many people take for granted healthy pregnancies and babies. This idea will come up time and time again throughout the next several months.

Monday night April 18th I got home from Bible Study Fellowship and got ready for bed. Mike finally got home and came upstairs to find me lying in bed (which I did often because I am pregnant and my legs, back, neck, eyes, fingers, elbows, everything hurt). He lay beside me. He said, “Hilary, we need to talk, Dr. Mulligan called me today. They found Trisomy 21 in your blood. Louisa has Down syndrome.” In the nature of honesty I literally said, “Are you lying?” To which he replied, “That would make me the worst husband ever.” When I realized he wasn’t kidding, a huge lump formed in my throat. Tears marched their way into my eyes and down my face. I wanted him to say he was joking and she was fine, but he didn’t. I looked at him expectantly like why are you not telling me you are joking?

Mike just stared at me. I couldn’t breathe. I just kept repeating, “They are wrong. They are wrong. Mikey they are wrong.” His eyes filled with tears. I think he would tell you that experience was probably the most difficult thing he ever had to do in our marriage. His heart was being ripped out. He wanted to save me and his daughter from this pain and there was nothing he could do. He just had to watch me unravel. My strong and powerful husband was forced to tell his already fragile wife that our little girl had Down syndrome. We were vulnerable and broken. We lay in bed staring at each other because that was the only comfort we could receive.

The next day was by far harder than the night before. Again, I was forced to function. I had to get out of bed and go to work in my office. I had to work next to people that asked me about being pregnant on a daily basis. I called my parents that morning to tell them about the news. I couldn’t say it without crying out, “Louisa most likely has Downs.” Both my parents cried and cried on the phone. Their once joyful hearts for this little girl were just as scared as I was. I got to my office and could not stop crying. I shut my office door and just sat staring at my computer. I called Mike and all I could say in a weepy voice was, “I don’t think I can do this.” He came over, brought me coffee, and just sat with me in my office. He didn’t cry but his presence was the strength I needed to keep going. I didn’t want to eat. I didn’t want to work. I wanted to have the privilege to crawl in a hole and hide.

The grieving process began. Mike and I would grieve our expectations at different times. Prayer was difficult, worship was almost impossible, and joy felt like it was a lifetime away. I couldn’t look at babies and I know that is an odd thing to say. It wasn’t fair that my baby girl wouldn’t look like them. She would be recognized in society as less than or as not capable of xyz. I told my friend, “I am one bad news away from shaving my head and hanging out with the homeless crazies’ downtown.” That was how I felt. I felt like I was going to lose it. Smiling felt exhausting and laughter seemed impossible. Hope was a tiny flame inside my heart that would be extinguished every time we had an appointment.

This is the abbreviated version! Imagine what the long version is like. ;)

Someday I would like to publish the longer version and the entire story from beginning to end but I will wait patiently for that moment.  I will end this entry today with this; although our hearts really did feel this way and sometimes still do hurt we are in much different places right now. Mike and I are really excited to bring home this baby girl. Our excitement does not change what we have been through or how scared we are and have been.

A gal's best friends

Today we had an OBGYN appointment with Dr. Ashmun. We are 37 weeks and she checked to see if, by chance, my cervix was open. It isn't. Boo.

Tomorrow four of my very best friends are coming down from Fort Wayne, IN to spend the night with me. I am absolutely thrilled to spend some time with each of them. These four ladies are friends I met my freshman year at Ball State. We all went to CRU together, we shared a bible study, and we started a gum tree. We played and laughed constantly. I have lots of friends that I care deeply for, however, these four woman are my soul friends and will be forever. They all love the Lord and love each other. When they found out about Louisa's heart and our diagnosis they decided to come down and spend the weekend with me. I know they are giving up a lot to do this and I am so grateful to them and their husbands/boyfriend.

Casie Barker, Melissa Pearson, Kayla Fox and Erin Hagerman

They are so special to me. P.S. I didn't ask them permission to talk about each one of them OR post their picture, individually, but I am going to anyway because I need to say thank you.

Erin Hagerman:

       You are the best. I love your sense of humor and the laughter we share every time we are together. You are always really open and honest with me when things are hard and when things are good. Thank you for loving me even when it was hard. Thank you for always listening to me and sharing hard moments with me. Thank you for crying with me and sharing your family with me. You are my DEAR FRIEND and will be forever! Thank you for scaring the crap out of Casie and making life fun! Thank you for the adventures we share. You work so hard in a profession you care so much about. I look up to you because of your perseverance.

Casie Marie Barker:

    If I were ever stuck in an airport or stranded on an island I would want you to be there with me. I cannot think of another person that makes every situation fun and amazing. You and Mikey are hilarious together, which always warms my heart. You are so positive and fun. I think you smile more than anyone I know. You bring so much joy to everyone you are around. You have more energy than my husband, which is pretty remarkable. You are always up for any adventure and I love that about you. You are brave and kind and I love you. We share so many precious memories that I will never ever forget. Thank you for sharing life with me.

Kayla Fox,
        You are prefect! You are a cornerstone. You are a wise woman of God and I really look up to you. You are one of the most empathetic people I know. You practice grace and mercy so well. I am so grateful to you for reaching out to me during this difficult time. Thank you for allowing me to be honest and loving me through the toughness of our situation. Thank you for giving me permission to grieve and not making me feel guilty. Thank you for your constant prayer. I can only pray that someday I am half the woman that you are. You have the best laugh and sense of humor. Thank you for sharing life with me.

    I am tearing up just thinking about what to say to you. You are so special to me. I love you with my whole heart. Thank you for years of laughing, crying, listening, and teaching. You have taught me so much. You are honest and wholesome. You love people hard and it is a beautiful thing to witness. Thank you for sharing parts of your motherhood with me. I know you won't believe me but you make it look very easy. I love your relationship with the Lord and with others. You have taught me; how to be a loving wife, how to have fun in marriage, how to care for two babies, and how to have faith even when hope is hard to find. You introduced me to my husband and you shared your entire family with me for years. You always made me feel welcome and like you wanted me to be around. I adore you.

Ladies. I cannot wait to see you all! It has been way too long since we all have been together. Again, i am so grateful that you are choosing to spend the weekend with me!

Wednesday, July 06, 2016

A different path

Hi. My name is Hilary Riley. I am Mike's wife of almost 5 years. I know this may seem strange for those that have followed Mike's blog for several years so let me explain. We decided to revamp Mike's blog so we could have an avenue to communicate with friends and loved ones about our pregnancy, birth, and parenting journey. We will write this blog together. We will share our perspectives and journeys together because to be honest Mike and I although very different are much better as a team.

Someday I will share how I believe God orchestrated our lives to intersect in so many ways. Before I post about our little one I first want to introduce myself and catch you up on Mike and I's life. While you patiently wait for that let me refresh your memory with this Save-the-date video. Mike had a lot more hair at the time, I guess that is what 5 years of marriage will do to a guy. =) I just watched it and I am crying and laughing out loud all at once (I will blame the emotions on being pregnant).


I am a sign language interpreter in the state of Kentucky. I currently work for EKU through a grant for the State of Kentucky. I am a full-time Vocational Rehabilitation Interpreter. I am insanely blessed with this job that I do not deserve but I am very grateful. I have been an interpreter for 6 years now. Mike and I moved to Lexington in 2012 and we bought a wonderful house in January of 2015. We love Lexington and our "family" we have created here. We recently became members of the Tates Creek Presbyterian Church. We are very excited to become a part of our church family and serve in a Church that brings so much to our lives. Mike works in industrial sales for Netherland Rubber Company. I know way too much about his profession because of how passionate he is about selling products. This man was made to be a salesman, spend more than 10 minutes with him and you will see what I am talking about. We are currently 37 weeks pregnant and it is extremely humid outside.  I am ready to meet our baby and (Bonus) to get working on my body being normal again.

 We are the Riley's.

We passionately seek the Lord and try to be as vulnerable and open as possible with everyone we meet. That is why we have decided to create this blog. I truly feel called by the Lord to start writing about our life and our diagnosis journey. So, onto the journey portion of this post.

We are having a little girl!

Her name is Louisa Jean Riley. This has been a long pregnancy. We found out basically at 4 weeks that we were pregnant. Needless to say it feels like I have been pregnant for 5 years now, not to exaggerate. My body has changed so much over the course of these 9 months. I am excited and nervous to have Louisa. I will post the extended version of our pregnancy journey tonight. For now, I just want to share how this week has been. Mike will tell you that I have begun nesting and our house is spotless. Although I have begun cleaning odd things there is still so much to do. This past weekend Mike's parents, Dianna and Pat Riley, came down for 4th of July and to help me prepare frozen meals for post baby arrival. We were able to make 12-15 freezer meals which will be a huge help. Tonight I am going to pack the hospital bag, not to throw him under the bus but, I don't really want to depend on Mike to pack. Mike has been overjoyed with so many things during this process, however, one thing he is rarely thrilled about it baby stuff. I will say the one purchase he was excited about was the monitor and I would say that is the only thing. I have a feeling he will be singing to Louisa through the monitor as she grows. He has helped me a lot with her nursery which I will post pictures of that later as well. Mike is so excited to be a dad. Neither of us know what is to come but one thing we do know is how to love someone with our whole hearts. I hope you enjoy this blog as much as we will enjoy writing it.