Tuesday, January 31, 2017

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. 

Wednesday, January 18, 2017

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. 

Monday, January 02, 2017

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.