Almost a year with our little man!

As we approach Isaiah’s first birthday, I thought I would reflect on his first year for a couple different reasons. One, God has completely blessed us with the most amazing baby in the world! Two, Zay has completely thrived in his first year of life! Three, I never want to forget the raw emotions we have experienced this year. We have been taught a lot about life these last 12 months.

I can remember arriving at the hospital at 7:30 AM on December 16, 2010 like it was yesterday. I was so excited, nervous, anxious, eager – you name it, I was feeling that emotion! There was even a bit of sadness I was feeling. I thought I would have to share Shane’s love after our baby was born. (Boy was I wrong, Shane would be the first to announce that our baby boy stole my heart, attention, love, and energy the second I laid eyes on him!) Anyway, I was so thrilled to meet our baby boy. I just wanted to see him. I couldn’t ever picture what our baby was going to look like while I was pregnant, so I was so anxious to SEE him. (Even if I tried to picture our baby…I never imagined red hair – so I was surprised for sure!)

It really was a miraculous day.

I could never have fathomed what our year ahead would entail on that day.

Shortly after we discovered Isaiah was jaundice, we also learned of Isaiah’s PKU and Hypothyriodism conditions. I vividly remember sitting across our living room (breast)feeding little Isaiah, as Shane took the phone call that confirmed his PKU. We needed to be in Iowa City the next day. And we were to continue everything as usual until then. I’ve never been so devastated. I cried. A lot. A million thoughts raced through my mind. Of course we had already done what the doctors had said not to do and looked on the internet to see what this “PKU” stuff was all about. “Not good” was the only thing I comprehended from the many, many articles we read. I remember looking at my sweet baby and thinking I was ‘poisoning’ him by feeding him.

Knowledge is powerful and healing…when you have the correct resources. Our doctors in Iowa City are amazing. They truly cared about Zay from day one. There is something quite sobering about holding your newborn baby, while doctors tell you the child you created is not ‘normal’. The weight of the responsibility hit me hard in Iowa City. I cried again. I recall our doctor saying “Isaiah’s ‘destiny’ is in your hands”. Ugh – that’s heavy stuff for a mother that already has emotions coming out the wazoo! Thankfully, my mom was quick to remind me that EVERY child’s destiny is held in their parent’s hands. Every parent has responsibilities to their children, ours are just somewhat different.

While in Iowa City that first visit we had to miserably watch our little Zay get poked 15 times. Yes. 15 times! He was so little (well technically not for a newborn, but still) every single nurse tried to get blood from him, but failed. Finally, after 3 grueling hours, a neonatal nurse was able to draw blood from the top of Isaiah’s head. Isaiah was so exhausted from the previous attempts, he slept through the procedure. Mom cried for him!

After Iowa City we slowly started to settle into our new normal. We logged everything! Poop, pee, formula, breastmilk, weight, etc. We learned how to take blood from Zay for testing his PKU levels twice a week. We crushed pills daily for Isaiah’s thyroid medicine. I emailed or talked to our dietician at least weekly. However, the best thing I did was talked with some other moms who had children with PKU. Hearing stories from other families that actually were similar to ours was very important. Right or wrong, in my weak moments, I often remember feeling a little offended by people who had “healthy” babies. I still struggle with not feeling understood by a lot of parents, but the trade off is for Zay to feel like a normal kid. When people make comments like “looks like he’s been eating a lot of steaks” or kindly offer him a cookie, I have to remember that it is a blessing that he appears completely normal and fits in! Even at the cost of someone not understanding what we go through on a daily basis.

Not long after Zay was about 6 weeks old, he started having some breathing issues. Wheezing, coughing, chest retractions. All kinds of things that make a little boy very upset! Because of his age, we had to go through a series of tests to rule out reflux and allergies. We had an upper GI test done. We started 2 daily breathing treatments around 3 months, these lasted until Zay was 10 months old. We had allergy testing done. Zay was put on oral steroids for his breathing 3 different times. He had those X-Rays where he was put in the torture contraption 3 or 4 times. Multiple tests for pneumonia and RSV. Every time a doctor saw him, they thought for sure he had pneumonia in his lungs, never the case. Finally at 10 months a specialist in Iowa City was able to diagnose Zay with asthma. We started a new daily breathing treatment that involves an inhaler with a spacer. This seems to be helping, however Zay still has a hard time with his breathing when he gets a cold.

Even after all these doctor visits, May 30, 2010 has become another incredibly memorable day. This was the day we found out that Zay had a MRSA infection on his upper leg. Probably picked up from one of the many times of being in the hospital. This infection had to be lanced. The. Worst. Day. Ever. I’ve heard over and over from people how painful these infections are for adults. How unbelievably unfair for an innocent 5 month old baby to have to suffer that kind of pain. Thankfully, Zay was cleared completely of MRSA a couple months later.

Amazing.

After all of this our little boy is THE HAPPIEST baby ever. People just oogle over how smiley he is. He just doesn’t let life get him down. He is a lot like his dad in that sense. He just takes what life throws at him and keeps on going. Shane said the day after we got home from Iowa City “Today is our day to be sad about this, from tomorrow on, we are strong and positive – for Zay’s sake”. We cried a lot that day (and I cried many days following), but we truly stuck to that. We know Zay is different and we have to communicate that with a lot of people, but we try hard to emphasize that he is NORMAL too!

Now that Zay is nearly a year old, we have really adjusted well. Shane and I were told a month ago at a conference that “80% of couples with a ‘special needs’ child end up getting a divorce”. Wow. Shane and I were surprised by that statistic. We both looked at each other and later asked ourselves, would Zay be considered “Special Needs”? I’m not sure. I don’t like the label “special needs”, but it is what it is. And we would be the first to admit this past year has been stress-filled. But we also would say that we could NEVER do this individually. We have grown so much as a couple. As parents. As a family. But most of all we have grown in our trust that God will not put more on us than we can handle. PKU. Hypothyroidism. MRSA. Asthma. Not going to stop Zay from living life to the fullest. Certainly not going to stop us.

Oh my, the things we can learn from adversity. Oh the things we can learn from a baby!

God has funny ways of communicating sometimes, praise Him for life’s blessings: Sweet, innocent babies! And life’s trials – the things we must watch our babies endure. For these things teach us how to love and help others. "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." –John 16:33