Sunday, December 18, 2016

Fed Is Best

I have been loving the tree of life pictures. If you haven't seen them they are typically pictures with the tree over the mother's breast and the child's face while nursing. I have seen some neat pictures with bottles as well. While these pictures are beautiful and I love seeing them, it is hard seeing them as it reminds me of missing out on this experience with Kaleb. Kaleb and I may not have gotten to ever get to this point of him nursing even though I had continued to hold out hope, but I wanted to make my own pictures. A look at what feeding looks like for us and the love and work that goes into each feed.

The first is a picture from one of my last pumps on November 4th. I had made it 14 months and a few days of pumping. Even though I still had 5-6 months worth of breast milk in deep freezers it was a hard moment to look at my supply dwindling and knowing that I was about to end that chapter. The other picture is Kaleb getting breast milk, just in a different way than most.

Breast or formula there is a hot topic that comes up in every mommy group I have ever been a part of, it is a controversial topic with both sides often getting defensive. So there is the saying fed is best. I like this and believe that for tubie babies this saying, fed is best, brings on a brand new meaning. 

For my fellow pumping mommas who for one reason or another are unable to nurse or those that do to work find themselves pumping; I applaud you. It's a pain, literally. I know what it's like to tirelessly hook up to a machine to provide breast milk for your baby. Spending hours with a machine instead of your baby, Instead of when you get up in the middle of the night to cuddle and nurse your baby and caress their cheek you hook up to a machine and play on your phone, possibly staring at a picture of your baby and caress the screen as you work to remember why you continue to pump. You continue to wash and sanitize pump parts, you log your pumps, calculate milk output, carefully label storage bags, and set up alarm reminders for your next pump. All of this for a child who won't remember this commitment and dedication. Know that we see you. Fellow pumping mommas we know what it's like, we've been there.

For tube fed mommas, it can be tough to hook up for feeds whether from gravity feeds or a pump. It can be tough when you see pictures of mothers cuddling while they nurse or give their baby a bottle, while feeding for you can be a wrestling match while you keep them still, make sure the tube isn't kinked, and every other detail that goes into a feed. It can be tough when you begin to get looks when you are out and it's time to feed. It can be tough when well meaning individuals ask how long until they can drink from a bottle or cup.Know that we see you. We see you provide for your child and learn a new way to feed your child, a way you never expected.

So mommas keep those tree of life pictures are coming but remember whether breast, bottle, or tube; fed is best. 

Saturday, December 10, 2016

Hey Batter, Batter: A Reflection of Kaleb's First Year at Home

You're not throwing home runs.

This is what my four year old told me while I pitched to him one night after he struck out. I told him I don't throw home runs, home runs are something that you have to hit. To which he informs me in his frustrated tone, "well you're not throwing pitches so I can hit home runs!" 

It made me realize we can often find ourselves whining and complaining to God about this very idea. We want life to pitch it right down the middle of the plate. Better yet, just set it up on a tee for us to smash. We want to know where the pitch is going and that it's going to be a pitch we can hit for a home run that follows with us feeling pretty pleased with ourselves as we comfortably trot around the bases. 

Well on August 26th, 2015 we were thrown a curve ball as our life took a sudden and unexpected turn with Kaleb's early and necessary arrival. Mix that with all of his health issues such as a brain bleed, heart defect, chronic lung disease, and Down syndrome.

Then a year ago on December 9th, 2015, we brought Kaleb home from the NICU. It was a long awaited home run that brought tears to our eyes as we trotted the bases, or more accurately as we wheeled Kaleb from the NICU. Leaving the NICU though was like getting thrown a change up. For those that are not baseball fans, a change up is a slow pitch that throws the batters off of their game as they were expecting a faster pitch. 

The NICU journey was ending but another chapter with its own challenges was just beginning. I say it was a change up pitch for a few reasons. We were definitely slower at getting ready and doing our day to day tasks as we juggled monitors and oxygen and learned to take care of him without a NICU staff and 24 hour care. It took only two hours of being home for us to realize this as we tried to undress him and get him ready for bed with cords everywhere. Or I could mention the next day as it took two of us to gather everything, get him ready, loaded up, and to his pediatrician. Where we proceeded to look like amateurs and drop his oxygen. 

Soon we were able to take that pitch and turn it into a double as we could be found going to and from appointments with monitors, oxygen, diaper bag, and medical file handled like a pro. All the while administering a feed through his g tube while pushing his stroller to his appointment. Have to admit I was pretty proud of that hit, the kind that can make you feel like super mom.

It was another change up as it was slow going coming off of the medical equipment. Leaving the NICU didn't mean leaving the equipment behind. Little by little the amount of oxygen was decreased and then dropped from days and then finally dropped completely. The amount of equipment and medication needed continued to get smaller, until we were left with a g tube. It took longer than we hoped it would but in the process we learned and managed. We learned to care for his needs, and it gave us a better respect for others who have been both parent and nurse for their child. 

Down syndrome is also a change up from a typical child. Those with Down syndrome will get there, but growing and hitting milestones is just at a slower pace. Some parents brag about how quickly or easily their child picked up a skill. For parents of children with Down syndrome, it's often not quick or easy. It has to be taught, practiced, and done in the child's own time. It can be trying, especially on bad days. However, it makes every milestone no matter how small that much bigger a celebration. While we still wait on some milestones such as crawling or his first words, there has been great joy (and often happy tears) that accompany the milestones accomplished. 

There were times in the past year like open heart surgery that felt like I was one out and one strike away from defeat. That wasn't the only time I had to battle in the batter's box as it felt that I fouled off strike after strike. Those were the times I was grateful that when it simply was not my night, that I had great teammates. Just like baseball, life is not a one man show. It's a group effort and while we celebrate the first year of Kaleb being home. I also celebrate my team; my husband, oldest son, both sets of grandparents, and all of our other family and friends who continue to step up and be a part. Not only have we seen Kaleb grow and learn but the same can be said for our family and our marriage.

Finally, it has drawn me closer to my swing coach. Ephesians talks about putting on the full armor of God. In baseball you don't necessarily go into the batter's box with a shield or a sword. However, with faith and His word I can go up to the plate and be sure of my swing. I'm sure life will continue to deliver pitch after pitch and paint the corners of the strike zone, always keeping us on toes. However, I can rest in the knowledge that God is painting a much bigger and brighter picture than I could have ever imagined and with His help I can be confident as I step up to the plate. 

One year at home down. On to the next chapter and pitch... Batter up!