Adjusting to a medical baby

In order for me to let certain things go (such as favorite TV shows that I felt compelled to watch but honestly left me feeling empty after I finished watching them), God knew he had to do something special - I guess.  He made me choose between what was acceptable and what was perfect.

The Apostle Paul wrote that "all things are lawful but not all things are beneficial."  Beneficial. The definition is "favorable or advantageous; resulting in good."  This was my choice in February 2012.  Would I choose to put the life and well-being of a little medical baby over my own personal wants & desires?  It's hard to explain what one feels when this begins to happen.  I can only explain it like this:  a slow, torturous death... to self.  There were many days I felt as though I was dying.  I would ache inside.  I had to remind myself to breathe.  I was beyond busy, and I didn't have time for things I enjoyed like TV, facebook, books, even e-mail, or calling many people. 

It would take 45 minutes to an hour to feed Buddy 1-2 ounces.  I would sit there and rock and rock and rock.  My mind would go and go and go.  Sometimes I had heavenly thoughts like:  "How is this little guy still alive?  He must have had nurses praying for him in the NICU."  One day I felt a warm current of love flow through my head, down my arms and into him.  Tears flowed at that moment because what I felt could only be described as the honest to goodness love of the Eternal God for this little boy.  I knew without a doubt that he (Buddy) was loved by God & now me.  I knew that I was the vessel that God was using to heal and help him come back to life.  Those were amazing, yet exhausting, first weeks.

Sometimes, however, I would have very selfish and normal (for a human being not yet glorified) thoughts like: "I'm missing The Bachelorette! Who is she going to pick?  I wish I had DVR.  Maybe we could get it?  Maybe I can just call 1 ounce good and lay him down and go watch."  Then I could tell I had a choice before me.  Did I just want little Buddy to survive or did I want him to thrive?

Part of the medical baby piece for us is having twice a day medicine that we are responsible to give him.  This is part of his Diabetes Insipidous.  The medicine has to be given every 12 hours, exactly.   If I am even a few hours off giving it to him (which has only happened two times), I can tell in his diapers and his fussiness. 

Then there is the medical appointments.  At one time in his life, he had 6 different doctors (Endocrinologist, Primary doctor, Gastroenterologist, Orthotics (helmet/shoe inserts), Opthomologist, Optometrist) he was going to, and I was seeing them every two weeks (staggered and not usually on the same day or at the same time) for the first 3-4 months of his life.  Then I have to do blood work to check his diabetes. In the beginning this was every week - on top of all the other appointments - but thankfully now we are down to once a month.  The public health nurse would come over at some time my day 3 times a week to weigh him and check his height.  (This is now down to once a month.)  Also, we had two sessions of OT every week.  We also had EIS (Early Intervention Services) one time a week.  Then we eventually added two sessions of Speech/Feeding.  Finally we've added PT one time a week.  For a while I had 7 services every week coming into my home.  My home felt like it had a revolving door.  In the midst of all these appointments, I had an 18 month old at home (still in diapers, still not a great napper & sleeper, and at times a bit jealous of all the attention the little baby was getting) and the normal life of a mom and wife.  Life just felt so much harder. 

More pieces of having a medical baby were getting his pump and G-tube feeding ready every night.  Just when I would want to go downstairs and watch TV or just sit down and rest, I would have to make up enough formula - this included a pitcher, a whisk, cold water, measuring out how many ounces per measurement (because his formula wasn't the normal 20 calories an ounce but was 24 calories an ounce to try and pack more nutrients into every drink) and getting that into his MOOG bag for the night.  I would put the MOOG bag into his little backpack with a cold pack and prime the tube so that his belly wouldn't be full of air.  Then going into his room, hooking up the bag to his extension from the MIC-KEY button, and making sure the rate and the dosage were good before hitting start.  This fed him all through the night, giving him usually an extra 500 calories. This was usually a 20 minute process in the beginning, but eventually I could get it done in 5 minutes.  The learning curve is important to remember when you get a medical baby.  In the beginning when all the medical pieces are foreign to you, it takes so much longer.  Eventually these become less time consuming and become more normal -- a new normal.

After two weeks of doing a lot of the things I had always done and adding a lot more things to my life through Buddy, I started to cry as I made my husband's lunch for the next day.  I cried very quietly.  He noticed and asked what was wrong.  "I feel so alone."  I could tell this bothered him because was I ultimately saying he wasn't pulling his weight?  I didn't mean to imply that but I could tell he took it that way.  "What do you want me to do?"  This was a hard question for me b/c I knew I had to be honest with him.  "I can't make your lunch any more.  I'm sorry.  It's just one more thing I have to do every night, along with the dishes and the pump.  He shrugged, "That's fine."  Then he said, "I've been thinking I should take over the laundry and do that."  (He had done that when we were first married and I was working while he was finishing college.)  I nodded, "That would help a ton."

I learned that I have to ask for help.  This was very humbling.  My pride began to die as I realized I couldn't do it all - by myself.  I needed to accept help.  I asked a neighbor girl to walk my dog and I paid her $2 every time.  She liked getting the money and I didn't feel guilty when I got to the end of my day and I was too tired to walk Lizzy.  I also hired a college girl from my church to clean my house twice a month.  It was an indulgence and one that I felt a little guilty at first, but my mother-in-law told me not to feel guilty because as she cleans for a living, she knows that sometimes you just need the help.

Looking back, because Buddy still has lots of medical appointments, labs, OT/PT/Speech/EIS services that we have to do, I see the grace of God sustaining me through those very tiring months and helping me make the right choices.  I let 'The Bachelorette' go.  I quit Twitter (didn't really use it anyway). I quit facebook for over a year and only occasionally go back to check on my friends (then I deactivate again).  I get the boys outside more, riding trikes and going to the park, and spend no time watching TV during the day (apart from an occasional video while I make supper).  DO NOT TAKE THIS AS A LEGALISTIC TO-DO LIST.  This is what makes ME feel good inside.  It might not be the same for you.  I get a lot of weird looks when I talk about how glad I am that I quit facebook.  I am not implying that you need to.  I am just saying for me (especially as a foster momma who cannot post pictures of my children) that social outlet doesn't work.

There are still things in my life that I need to let go of, but God used that sweet little medical baby to help me choose to make a few right decisions in letting go some of life's superfluous activities. 

If you are a parent of a medical baby, I welcome your feedback and your thoughts about the tough moments. If you aren't,  I still welcome your comments and kindly written thoughts.

 God bless you.