Monday, May 12, 2014


Hello friends!  I know it's been a while since there's been an update.  Mostly it's because we've been doing well... and playing!  In the last 2 months we've been fortunate to spend some time with my family in California and visit some dear friends in Florida.  Both coasts before 4 months old - not bad for a future world traveler.  She must have some of her grandpa's travel genes because she's already an expert. There were very few tears over the hours and hours of travel - much to the relief of all those seated in our vicinity. After all the unknowns surrounding her birth, surgery, and managing multiple MD appointments for the first 2 months of her life we have just really enjoyed the last 2 months. We haven't had to worry about anything and its felt like we have a "normal" baby.  Miss Lydia started sleeping through the night, started smiling at people - especially if they tell her she's pretty, and she'll talk to anyone she thinks is listening - usually the baby in the mirror. There is no shortage of compliments for this beautiful girl when we are out and about! Life just started to feel carefree again and I almost forgot about spina bifida...

Well our vacation from reality ended last week.  We went to the urologist last week and they did a test to measure the pressure in Lydia's bladder. Unfortunately her bladder pressure is high and her bladder is almost never relaxed as it should be. This makes the kidneys unable to drain into the bladder properly and if left untreated can cause kidney damage.  Her bladder also holds very high volumes which may cause urine to back flow into the kidneys and cause damage. On top of this, her bladder doesn't empty completely making her prone to infections from urinary retention. Not good!  Since the test results were not favorable the urologist wanted to go over our treatment options right away which meant she ended up squeezing us in between surgical procedures. She proceeded to give me the bad news and then rattle off our treatment options in less than 2 minutes and then wanted to know if I felt strongly for or against any of those options. Hmm.  What do I feel strongly about???  I'm against having to do anything to my baby that is going to make her uncomfortable. I'm against my child having irreversible kidney damage before she's a year old - or ever. I'm for telling you to go jump in a lake for seeming so nonchalant about me having to pick one of these options. Since I couldn't say any of that without sounding like a crazy person I was standing there trying to process all that she told me while bouncing my fussy baby, keeping her pacifier in, and praying I make the right decision for my child. I'm so thankful I have the medical knowledge that I do from being a RN, but it still isn't easy - especially when it's taking all your resolve not to end up in a puddle on the floor. For now we are going to treat Lydia with oxybutin - a medicine that will help relax her bladder. While this medicine is doing its job of relaxing her bladder to protect her kidneys it may relax her bladder so much that she never urinates without using a catheter to drain her bladder. So we also started her on a cathing routine. I did not leave that appointment in the highest of spirits. I know that life always looks brighter when you are thankful, so on our drive home I told Lydia all the things I was thankful for; from the sun shining to the fact that we have medicine to give her.

As we started our new routine in that week before Mother's Day, I embarked on a roller coaster of emotions familiar to most moms. Guilt, worry, fear, anger, frustration - all enveloped in one big heartbroken mess. It was all I could do not to bawl as Joel held her legs and I cathed her for the first time.  She did great and I'm thankful I know how to do this. That doesn't make it any easier to accept the fact that this isn't just something we have to do for a week or a month.  This is her life now... for years to come. Its hard not to let your mind run ahead and worry about how all this could affect in her future. Then to make matters worse, Lydia got a urinary tract infection. Talk about a tidal wave of guilt. I was absolutely miserable over being responsible for adding to my sweet baby's discomfort. This then led to an extremely frustrating day of trying to obtain antibiotics for her from very unhelpful people. It seriously took a full 12 hours from the time I started making phone calls until I had antibiotics in my hand. Suffice it to say none of us were having a great week. Then add in the side effects from her new medication: urinary retention, constipation, overheating, and severe dry mouth. All of these have me wondering if we are doing the right treatment for her, but I'm afraid of what will happen to her kidneys if we don't use this medication. My heartache over my beautiful baby made my chest physically hurt.

By the time dawn was breaking on my first Mother's day I was a mess! I was up with Lydia at 3:30 am as she was distressed over her dry mouth. She loves to suck her thumb, but that doesn't work so well with a dry mouth. Watching her frantically going back and forth between her two thumbs and howling when she couldn't soothe herself just made me so sad. After 3 hours of continually wetting her mouth with a syringe and trying to get her to suck on a wet wash cloth she finally fell asleep on my chest. Then in the midst of my sadness I was just really angry. Angry that Lydia had to deal with this. Angry that I had to cath her in an hour. Angry that she had this blasted spina bifida. I felt like my soul was limping along as we walked into church a few hours later. I also felt like I was a pressure cooker of emotions and could explode at any moment.  Soooo I snapped at my husband. Then as I tried to get out the words to say I was mad at him for this and that I fought back all the hot tears threatening to pour out. I knew that I wasn't really mad at him. I was mad at spina bifida for the way it was affecting all of our lives... and mad at myself for not handling it better.  It became apparent that I was not going to make it into the service. I asked Joel for the keys but he held onto my hand and suggested we go on a walk together. He must have read my mind - which at that moment was making plans to get in the car and drive somewhere where all this did not exist. Joel was a wise man and held onto me! And now we are "Those Parents"... The ones who left our child in the nursery while we went for a walk and then sneaked back in before the end of the service. Sorry Pastor Kerry, it was a "desperate times" kind of moment.

As I have been climbing out of the pit that has been this last week, there are two thoughts that have been comforting.  First of all my daily devotional (Jesus Calling by Sarah Young - it's a good one people) was derived from John 16:33, which states, "I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world." God wants me to remember that He has the final chapter written. This world and whatever hardships we experience in it won't last forever. That is so good to know! Secondly, there is a Chris Tomlin song with the chorus, "I know who goes before me, I know who stands behind. The God of angel armies is always by my side."  Now how can I possibly walk in despair with that nugget of truth to rest upon? The God of the universe - who has every angel at His command - still takes the time to surround me, Joel, and our Lydia - and walk with us through whatever the day holds.