Sunday, May 31, 2009
Thursday, May 28, 2009
Tuesday, May 26, 2009
Sunday, May 24, 2009
Tuesday, May 19, 2009
Monday, May 18, 2009
The roller coaster speeds along, the screams of terror coming from the passengers in the front seat of the unpredictable ride being heard throughout the entire park.. The unfeeling, empty-eyed ride operator cares not a whit as the cars pass by him, riders frantically trying to catch his eye as they pass, begging him to stop the unnerving ride. They really didn’t want to ride in the first place, and the ensuing ups, downs and all around fear of the great coaster as they reached the first high curve made their stomachs feel weak. Surprisingly, at times, the ride seemed exciting and enjoyable as they were whipped high toward the treetops and felt the thrill of the moment, the now moment. They were quickly reminded of their fear at the next turn, when the bottom seemed to have dropped right out of the car floor beneath their feet.
Amusement park intro, or two weeks in the NICU at Presbyterian Saint Luke Hospital in Denver, Colorado? You guess. Monday into Tuesday seemed like progressive kinds of days. Chloe was accepting her feedings and had gone from 3 to 9 c.c’s every 4 hours when I got there, and all was well. The nurse from the night before had reported weight gain that put her at six pounds. I questioned that number, but was assured that it was possible, and the real deal. Imagine the warm, fuzzy feelings I had when I called Jennie to report the positive news of the day. She had stayed away for a day and night, afraid that she had a cold and did not want to compromise Chloe’s health anymore than it already is. Noon arrived and when the nurse initially prepared the syringe for feeding, when she pulled it back to test if there was any milk in the stomach tube, surprisingly enough, there was. A lot. This wasn’t a good sign and the doctor arrived and told us they would have to put in a different type of tube. The new one, instead of stopping in the stomach, would be placed further, past the stomach into the intestine. This allows the stomach to have some more growing time and doesn’t push Chloe too hard, but still allows her to be nourished with breastmilk. The problem came today, when Chloe was fed and later vomited her food. Her small tummy just isn’t large enough to hold the feedings all at one time, the new tube will feed her tiny amounts for longer periods of time. This development just took the wind out of fragile little sails. It seemed like we were moving in a pretty positive direction and the possibility of actually going home in about two weeks was real. Placing that new tube meant ‘a little longer’ and this little tidbit turned our smiles upside down.
We moved on, we all know it is not good to dwell in the dark places, to let those negative emotions and thoughts come to the forefront for long. We pray that Chole is getting good care and know that she will come home when she ready. So we moved along, Jennie arrived, I went home and actually get to teach for an hour. Thank you, Greyson, for your spirited laughter and presence in my day! You were my calm in the storm today. I left my student and had some time to catch up on shopping a bit, feeling somewhat energized because I was doing something what felt routine, in my beloved little town. It wasn’t five minutes after I stepped into the store that the phone rang. It was Jennie, sharing yet another setback. An x-ray had been performed, which showed that Chloe had aspirated some the fluid that showed up in the trach. A ventilator tube was placed over the trach tube instead of just the oxygen, in order to aid Chloe’s lungs with a little pressure while she deals with the aspiration. There was no bacteria in the sample taken which means no pneumonia! Jennie’s voice sounded so disheartened and as I made my way through he store, the realization of just how complicated it is to stay upbeat, yet so imperative at the same time, really hit home.. We have all sort of handed the role of ‘strong, positive one” back and forth a bit this week. I’m sure that will be our mode of operation for a long time to come. This is really apparent to me as I write this, as today I am tired, yet pretty positive. I actually have been writing this update for a few days,( I haven’t had good internet access), and just look how negatively it started out! I definitely was not in a great place with that introduction, was I? Lessons are being learned each day as we encounter the good and not so good moments in our days. I hear from many of you and your words of encouragement are extremely helpful in aiding me to stay grounded and centered, and in turn being there for others in my family. Thank you to all of you! Keep the prayers coming, and please continue to invite friends into the group. Lovingly, Nancy
Chloe was born on April 20th by cesarean section after a very difficult pregnancy. She made it to her 37th week of gestation, surprised her parents and required a Flight for Life ride from Ft. Collins CO to Denver in order to be delivered by the team who could ensure a safe birth. Chloe was born with tremendously difficult abnormalities. She has facial abnormalities that are likened to a syndrome called Treacher Collins, yet it is not that. The severely underdeveloped jaw bones made it impossible for her to breathe without a tracheotomy and when she was taken to surgery for that procedure, many complications were found in her intestines. A planned feeding tube in the stomach was not placed because of her small tummy. She had intestines wrapped around the pancreas and a blockage that was fixed. Since then, she has not made much progress that points toward a feeding tube soon. She has excessive gastric secretions that are being dealt with through a tube in her nose. She is a very, very ill newborn. She may or may not be hearing and with the facial deformities, many other problems. Her parents were expecting some problems, but nothing of this magnitude. They are in shock as is the entire family. We all feel so helpless and my daughter is so absolutely devastated. Finances are scarce, and a huge blessing is The Ronald McDonald House three blocks from the hospital where the family can stay. They also have a 3 and 5 year old, who are in the midst of huge changes going on about them on a daily basis. We are asking for the prayers of anyone we can reach, for the strength and understanding to face this crisis. We do not know God's plan in this, but do have strong faith and hope that with the heavens being flooded with prayer, we will all feel his grace and love and be guided as to how to function through this. This baby is so sweet and this is just so sad.