Day 24 2.11 pounds

Newborn undershirt with arms wrapped around little Grace...
that might help show her size.

I love hands...catch the fingers covering her ears

Look at this hand...how perfect her little body is

long little piano fingers

Today has been a hard, emotional day all around. It started out great though with trying to get things packed up in the apartment for John to come and get it this weekend. I was so happy to pack up in anticipation of returning home. We got to the hospital about an hour early for Grace's touch time. Come to find out that a twin from a family we met shortly after Gracie was born, was severely ill and the room they shared was going into surgery lock down. Lucy, the twin, was going to have surgery to see if they could find out what was wrong. I couldn't believe it. She has been battling an infection for a week or two but she was on antibiotics, so it looked like she was o.k.  She was far from o.k. After talking to her parents, Damon and Laura, they were thinking part of her small intestines had stopped working. The doctors were going to do exploritory surgery to see if they could find out what was happening. The girl's NICU room was closed during early afternoon. When I saw them before surgery, all I could think of was to hug and pray for them. I felt so clueless on how to help them. I could only relate to their situation with the surgery, not with how ill their sweet baby girl was. Sure, Gracie's heart wasn't working right, but Lucy was severely ill with some unknown issue. How do you try to comfort a mother with that type of situation? My heart was broken with sorrow. The only thing I could think of was to email everyone I knew to ask them to pray for little Lucy.
While the surgery was going on...my bad news came. No transfer tomorrow at 8:30 a.m. The problem...get this...there isn't a billing code to be able to pay the transport team from Children's Hospital. O.k., well is that a problem? I mean, isn't the insurance going to pay? Oh, yes, they approved every penny. What is the problem then? Well, if there isn't a billing code, they can't enter the funds anywhere and the team needs to be paid. The reason this is a strange problem is that usually the hospital from where the baby is from or either going to, eats the cost of the transport team. Now, yes, I know...this is a strange problem..I mean, can't they just pay with cash? or can't Kadlec just eat the cost as they are the ones who transported  me up here originally and they are the ones who are taking Gracie back? I don't know...this was a "catch 22" for a large number of people working on this transport. Needless to say, she isn't heading home tomorrow morning...maybe Friday. Pray for Friday.
This doesn't hold very much importance right now though. Such a small problem, as she is healthy.
 The day, for me, was focused mostly on little Lucy. She made it through the surgery but the next 24 hours might be touchy. Grace's 5 p.m. touch time had come so I went in to change her diaper, take her temperature, clean up her eyes, mouth and nose and swaddle her for holding time. During holding time...they ask you to hold for an hour or more because getting the baby out of the isolette can be stressful on the baby. As I sat holding little Grace I cried for little Lucy. I could see her quiet struggle for life. The monitors would go off as her little heart and respirations were slowing. Nothing could prepare you for that happening to your little one. My heart broke for Laura, Damon, little Lucy and even her twin sister, Elena. Poor little Lucy lost her battle for life just after 6 p.m. What a fighter she was. This moving event has forever changed my life. These little preemies are indeed very fragile and even a little infection or cold can take their lives, sometimes very quickly like Lucy. This world in the NICU is very surreal. It is a different kind of world. Not one that anyone would, could know unless they have been there. Having a micro-preemie is a very humbling experience. Seeing babies struggle to breathe during transition time after birth, watching mom's cry over their baby's good days and bad days, seeing families who's marriages are falling apart because of a NICU baby/experience, longings for NICU graduations, and seeing a baby not make it. There are many good things and many not so good things. This is a place which causes you to live each day, sometimes hour by hour, not week to week. The world still turns outside of here but days blur together as you tend to only look at the hours not what day it is. It is a place, that if you don't focus on the good, the bad can overtake you. Sure these babies have great days, advances in growth, and the smiles are to die for! Today was just a tough day.
Please send boxes of kleenex my way. One wasn't enough for today.