Thinking back to Sept 17, 2013

Last year September 17 was one of the worst days you had in the NICU.  Looking back on your whole NCH journey there were many bad days, but besides the day that you were transferred to NCH it was the most scared I'd ever been for you!

I got in early because our pastor was going to be making a visit that morning.  Your feeds had started up the previous evening and Daddy and I were worried that your belly would not handle Mommy's milk again.  But we had gotten through the night with no 2am phone calls, so walking in to your room I was anticipating hearing the good news that you were tolerating your feeds well.  However, when I said hello to our primary nurse, Lisa, and I asked how you were doing, "Well?... The NNP is next door, I'll have her stop by so she can talk to you."

WHAT?!  What was happening that our nurse couldn't tell me what was going on?  The NNP explained that you had had no urine output for over 8 hours and they thought your kidneys were shutting down.  Multiple tests were being run, abdominal ultrasounds...they also speculated a possible infection or a hormone imbalance.  When the new doctor came in to explain further what was going on, she told me that you would need to have your PDA ligation surgery the next day because things were looking pretty bad.  WHAT?!  Two days prior the previous doctor had said that the surgery would not be for another few weeks.  That was a bad first impression for Dr. R...(who after long, long discussions and confrontations ended up becoming our favorite doctor in the practice.  She was the one who discharged you.)

On Sept 17, 2013 my motherly intuition was telling me that the doctors were wrong that you were just dehydrated.  Praise be! It ended up that I was pretty much right, but the NNP and doctors jump to worst case scenarios because if they don't treat the worst case right away, often times in tiny babies, it is too late.

That day was SO HARD emotionally.  Then add our pastor visiting to the mix of all the commotion, when I had no idea all that was going on with you made visiting difficult.  Daddy left work late morning because of the urgency of your treatment and the concerns we had for your life.  We could not hold you because of all the testing being done.  You needed your rest, but yet there were people constantly poking and prodding, sticking needles, drawing blood, etc.

I was scared we would lose you.  I felt so helpless and sad for you.  I am so thankful that the Lord protected you and brought you through this day.  I love you, little fighter!

Congratulations?

"Congratulations!"  That is the normal response when a mom has a baby! 

But when Joshua was born that word made me angry.  In my opinion, a micro-preemie birth is not a reason to give someone congratulations.  "Congratulations!" your baby was born so early he has a high probability of dying or having severe handicaps..."Congratulations!"  Really?!  Could you please think before you speak?  Those who congratulated me included nurses, hospital workers, family, friends...That first week (or more) I HATED that word!

If you are reading this and you said "Congrats!" to me when Joshua was first born I forgive you, but there is a more thoughtful way to respond!  Because if someone didn't say "Congratulations" they usually didn't say anything...and that hurt the same as the insensitive Congrats!  

Saying nothing meant that you did not acknowledge the life that I just gave birth to.  It still is a baby, one who is fighting for his life.  I needed support, encouragement, and in the days to come I needed someone to acknowledge my baby.  I often felt that people understood that our family was going through a rough time (by providing meals, gift cards, or childcare), but heaven forbid they show any sign of compassion toward how Joshua was doing or how we were really doing!  Heaven forbid they act like we had a real baby and get him a cute gift like others had done for my full term kids.  Or heaven forbid they come to the hospital to visit this child that I birthed and was fighting every moment to breathe!  I desperately wanted people to see my son, not because I asked or nagged them, but because they wanted to support me, Joshua, and our family.  I wanted them to care to see this difficult slice of our lives.  But people didn't want to "bother" us, so NO ONE came.  We had three visits from Columbus friends during our 5 month NICU stay - that’s it!  And extended family wasn't much better!  

Face-to-face people rarely even asked about Joshua.  There were a few people who asked, but you could tell by their demeanor that they really didn't want to hear a truthful answer and it was frustrating to me…then why ask?!  They didn't want to hear the struggles.  There were a select few who I shared my heart with, but after doing so it was clear that they didn't want to hear it either.  They just wanted to pass me along to a “professional” to discuss my feelings.  True friendship stands beside the hurting soul and realizes that sometimes “Congratulations” are not in order, but sometimes a shoulder to cry on is.  You don't need to give advice, just listen and care,  be present, and continue to ask throughout the WHOLE journey...and really listen to the answer even when the answer isn't an easy peasy - "Everything's great!"

I have such a love/hate relationship with FB.  Some of my FB “friends” have never once talked to me face to face although we may go to the same church.  Or there are others who write beautiful notes on facebook like they are my best friend, but then play with my emotions because they rarely talk face to face.  If there is no face-to-face relationship then any type of FB relationship is meaningless.  There are days that I feel that those people don’t deserve a glimpse into my life anymore.  But yet Joshua’s story is one that is a testimony to the Lord’s faithfulness, so I feel obligated to update.

All that random talking to say… One year later, I was excited to celebrate Joshua's big MILESTONE birthday!  To celebrate and congratulate Joshua on his big year we got a very thoughtful shower of cards from Fort Wayne.  People from my parent's church got together and showered us with birthday cards for our birthday boy.  It is too bad that it took a year for people to celebrate, but I’m thankful for it.

Amazing what a year and thousands of prayers can do!

Today was a hard day for me with lots of thoughts going to last year.  People wished me a happy birthday today saying, "I know it will be better than last year!"  But you know what?! I would go back to last years' birthday in a heartbeat.  I do not want to relive the NICU days, but you gave me the best gift last year; it is one I will never forget as long as I live...the hour I got to hold you for the first time!

In a way I was nervous to pick you up, but I was confident as a mom.  I didn't want the nurses to place you in my arms.  I'm your mom and I was going to do it wires, tubes, and all.  You weighed next to nothing.  It wasn't even like picking a baby up because you didn't move you just stayed motionless in your snugli wrap.  Your skin didn't feel like skin; it was so thin and sticky from the humid isolette.  Your head was so small my hand could not even cup around it as I held you.  The nurse put lots of warm blankets on you to keep you nice and warm against me.  I was afraid to move them for fear that you would get cold and have to go back in the isolette.  I wasn't allowed to rub or stroke you all your wires were taped down, and I didn't move a muscle or make a sound for that whole hour, but I treasured every moment with our hearts against each other, mine regulating yours, trying to figure out this new NICU setting and become more confident in this new home you had been placed in.

How could anyone say it was an awful birthday last year?!  God knew what my heart needed and he answered this prayer and so many prayers to come.  Look at you snuggling in to me this year!  This is a very rare occurrence these days as you are always on the move, you don't even like to breastfeed anymore.  Even in the quietest of rooms you get so distracted twisting and turning, moving and kicking, smiling and bouncing...but tonight you snuggled and I thank you for giving me another wonderful gift!

Party Time!

What a day to celebrate!  Out of town family and friends, friends from homeschool co-op and your friends from the NICU and two of your nurses came to celebrate your big birthday!  The weather turned out great!  The heat was bearable with the wind that picked up, but the wind made it difficult to display all your pictures and memorabilia.  Thankfully the rain held off until the party was over.

It was a great time with good food and great fellowship.  You received a few gifts, but the majority of the gifts were given so that we can donate to families currently in the NICU.  We really appreciated the gift of the lion you received from Aunt Elizabeth and Uncle Mike when you were just a few days old.  They wanted us to remember that our heavenly Father, the King, held you in is loving hands.  So we made a lion, the "theme" of your party.

Last year I really could not imagine even making it to this day of celebration!  And look at you now!!!