Chloe Struggles

May 31st, 2009 I don't have any particular good news to write today, other than this group continues to grow and that makes me very, very happy. Chloe has had a few rough days, since the trach trials were discontinued I guess. If you remember, when they got to 6 hours off at a time, three times a day, she just didn't do well. They had to reevaluate that process, and in the meantime, Chloe has gotten some sort of infection. Many, many different tests have been run, but it has remained inconclusive as to whether whatever she has, is viral or bacterial. She has been placed on the ventilator for the past two days, this time it is just not offering support, but is helping her to breathe. Her little heart and lungs are just working overtime and in order to get her rested she just has to have some additional help in breathing. The docs would love to see respirations in the 50's, but Chloe has consistently been taking 90 -100 breaths per minute. This number has been elevated since birth, but not quite so high or so consistently. She has been having hot sweats and it has been difficult to calm her. This is so intense for me, as it is all body language, since she cannot make a sound. I don't know if it would be worse or better to be able to hear her cry. She is so irritated, it might actually be harder. Watching the grimaces and flailing arms and hands is pretty difficult as it is. After about a day and a half of searching for clues with no apparent answers, she was put on antibiotics last evening. Better to be ahead of the eight ball and not behind it. That was about 8:30 last night, so not even having the 24 hours of antibiotic, not much has changed yet today. She was also put on Ativan, which is a mild tranquilizer that is allowing her to relax and finally sleep. It is much better to watch a sleeping baby, forced or not, believe me! We all feel that she is getting very good care. The nurses are absolutely the best, and the doctor is never far away. I watched them come and go yesterday, concerned and purposeful...looking for the answers as best they could. There just aren't any to be had quite yet. Tomorrow we have a Care Conference planned where all of Chloe's caregivers and the family will meet to discuss what has happened so far and what the future might look like. This is sort of amazing to us, as Presbyterian Saint Luke staff told us they could NEVER get everyone together at one time. Here, Jennie requested it and they asked what day would work for HER! We love it here. I wish that I had more to offer in positive news. We are thankful to God for the gift of Children's Hospital, for friends and family who call, pray, lend a hand, an ear, a heart. This is by far the hardest thing I have experienced in my life. I pray all day and dream the same thing all night, every night. God is good, all the time. We will never stop having blessings to count. I just pray that Chloe is not in a lot of pain and that God's will be done. A friend gave me the scripture to read, John 6:16-21. I encourage you to read it. It basically talks of our fears and struggles and how Jesus gives us peace and keeps us in His loving arms as we experience life's struggles. Reading it sent chills through my body and brought tears to my eyes. Thank you for sharing, Camie. So, until next time, please continue to pray and invite your friends to this group. Lovingly, Nancy

Chloe and the Family

May 28, 2009

"Faith is walking to the edge of all you know...and taking one more step." My favorite adage for a very long time! Oh, the times it has seen me through!

Well, Chloe is 5 1/2 weeks old, amazing how it seems like such a short time, yet forever in the same time continuem. We have all waited for the day to day progressions and given thanks for the tiniest of details. We have prayed unendingly for the best things for both Chloe and the family. I know that at times I have not even known what to pray for! Chloe's great-grandma tells me to just pray to the Holy Spirit when I am at a loss, that the prayers will be said for me, and I have done just that. It looked as if Chloe was really taking some giant steps toward going home this week, for a while. Docs decided that she was ready to be weaned off that CPAP, which puts a bit of pressure on her lungs and aids her breathing. They began with two hours off the machine, three times a day. That went well, and they moved along fairly quickly to six hours off, three times a day. The seemed fairly rapid to me, but who am I to say? Chloe had the final word by reacting not so positively to the six hour regiment. Her pulse oxygen level kept dropping down below the norm and Jennie thought she was pale and clammy for most of the day. That was yesterday and today they felt she needed to rest and no be disturbed so took a break from the whole thing. I guess they plan on taking a bit slower approach now and we'll see how that goes. It has pretty much been determined that she will go home with the feeding tube that goes down through her nose. Her smaller that normal stomach is preventing the placement of a g-tube. Hopefully, her tummy will continue to grow bigger and that will change before we know it! Right now, I guess getting the breathing down is the goal, although she may end up going home with both the CPAP machine and the feeding tube. Jennie is pretty anxious about that, but has been reassured that they will all have all the training necessary to take care of Chloe before she is sent home. It feels like a very long journey to me, but each one does start with single steps, doesn't it? Jennie has been keeping Kadin and Sierra down in Denver with her more this last week since Sierra got out of school. Chloe having the private room and staying at The Ronald McDonald House helps a lot. They all miss each other when they are apart, and although this is by far perfect, they are together. I really feel for the kids, who are feeling the effects of not being in their home and having such a completely different routine. They both are exhibiting some behaviors that show their frustrations. I decided to bring Sierra home with me yesterday, to have some special Grandma time. We had a great day today, and she decided she wanted to spend another night here. Great by me! Jennie says Kadin does better by himself when he is with her up there, also. He is more of a mommy's boy though and needs her a bit more. Anyway, we're trying our best to meet everyone's needs. Lance probably has the hardest schedule. Works all day in Ft. Collins, drives to Denver, eats, visits Chloe, drives back and gets up and does it all over again the next morning. I'm sure he must be feeling some pretty heavy pressure. Maybe we could all direct our prayers more in his direction for a time. This is such a draining experience, no matter how you look at it. We are being given the energy and tools to move positively through each day, and have learned fairly quickly that you do these days ONE AT A TIME! If it weren't for prayers, support, friends, family, encouragement, understanding, patience and tons of other things being offered by all of you...who knows where we would be. NOW, because you DO offer all of these things...we are prepared for tomorrow. Thank you, and love to ALL! The Praying for Newborn Baby Chloe group on Facebook is amazing! Since getting Josh's help, we are over 500 members. I also have the blog started at www.prayingfornewbornbabychloe.blogspot.com Wherever is easiest for you to access this update, please just do it and invite your friends. Just think about what all this positive action is doing for Chloe! All my love to all, Nancy

May 26th, 2009

Wow! I figured out something else! I thought that I had to delete my previous posts in order to write a new one. Ah Ha moment! 

First thing today, I need to send special thanks to Josh Hurst and all of his fellow students at Putnam City North High School. Josh helped me to get this prayer group moving and it looks like much of the student body at his school has joined. This must be a VERY special group of kids, I wish that I could meet all of you. As an educator, you all hold a very special place in my heart! 

Chloe is stable. Yesterday, the respiratory team began trials again which allow them to take Chloe off of the ventilator for two hours twice a day. I was there for the first two hours and she did very well. They will lengthen this time as she continues to show them that she can tolerate it. She continues to breathe very fast, which seems to be her 'normal' and that is being taken into account. Her feeding seems a bit more complicated. She pulled the feeding tube out again a few days ago, but this did allow the docs to place it where they wanted it to be in the stomach. She is not being fed with the continuous drip anymore, but every hour and a half, more like a baby would be fed, with a larger amount of food getting into her tummy at one time. There is still some reflux into and out of the nose at times, so that is being monitored. It seems like I am there a lot when that happens and I always sort of panic. She needs to have everything suctioned immediately so that there is no aspiration into the trach and lungs, so that really brings a feeling of anxiety. Yesterday I yelled for the nurse, by the time she got to us, I had the suction tube in my hand, but hadn't remembered how to use it! It is all just a bit intimidating to me. So, the feedings will be increased as much as the tummy allows. Otherwise, Chloe is growing and just being more and more dear to our hearts each minute. The hearing test has yet to be completed, but yesterday we were having a big rainstorm and as Jennie and I were standing by Chloe's bedside, a huge thunderclap practically shook the building. Chloe acted startled and we were absolutely convinced she had heard it. She also wakes up when we arrive and tends to stay awake for long periods when there is someone in the room. Being so alert, she seems to listen to all that is said, she MUST be hearing! So, those ear canals must be functioning, which is a Godsend! I still do not understand what they will do with this situation. They will eventually fashion her ears, but I have no idea how that will effect the pseudo ears on her face and the functionality of those canals. Time will tell. She has grown 1/2 an inch and with the gaining and losing of ounces here and there, now weighs one pound more than her birth weight! 6 lbs. 11 ounces! Progress is being made, and I am absolutely certain that the power of prayer is at work. My mood is certainly more hopeful than in my last update, I think that prayer and support from so many people is lifting me up. I will be forever grateful to each and every one of you! I finally had the opportunity to just SHOW Jennie this page yesterday. She was so amazed and grateful for all the love and good wishes that people are showering on this family. We thank God for all of you! Lovingly, Nancy

These are the Times

"These are the times that try men's souls." These words were the opening lines of philosopher Thomas Paine's series of pamphlets entitled The American Crisis. The pamphlets were intended to help boost the morale of the colonists who were embroiled in a war with the English. His writings were written in language that the common man could easily understand and relate to, and also appealed to the people of England in consideration of their battle with the Americans.

This may seem like an unusual introduction for the day, but it suits my feelings on a couple of levels and my analogy for what is happening in our lives at this time. I feel that I have been dropped into the middle of an unpredictable battle, where lives are being commandeered by forces greater than their collective whole. That itself leads me down many, many paths of thought in a single day. Differing pathways are tread upon when my 'morale is boosted' by encouraging news from doctors or nurses or just the support given by friends, family and literally,complete strangers. This battlefront has bloodied my positive outlook, the very outlook that has given me an attitude over time that allows me to see, be and act in gratitude each day that I live it. It took me a long time to gain that perspective, lots of hard knocks which effected not only me but every single person that I have known and loved. We experience life and take what it has to offer, hopefully making decisions along the way which benefit those people around us. Unfortunately, in  my experience, the domino effect of choices being made by myself, coupled with others, often plowed down whatever it encountered in its path. The funny thing is, I thought I'd made it past that part of my life. My family seems to have had more that its share of crisis and life changing tragedy. So, as much as I hate war, I've had my fair share of it, and Thomas Paine's words ring true in my soul. That he offered solace and inspiration means even more, because just as America found their way to the end of the revolution, I believe so will we. We have all fought and won the battle before! Please just keep the morale building to a maximum!

The most difficult parts of this experience are watching little Chloe in her battle to overcome the things we so easily take for granted every day...eating and breathing, and also watching those who love her grasp at straws to understand why such a sweet little thing has such a difficult road ahead of her. Chloe was moved into her new private room the night before last. It offers her more peace and quiet, a much less stimulating environment so that she has more time to rest and put her energy toward growth and healing. It is really a much more friendly sort of room for the family. There is a tv with a dvd player, so even though they need to be quiet, Sierra and Kadin can watch a movie or cartoon and be entertained a bit while we hang out with Chloe. This will allow for much less division in the family time, although I already see some frustration on Sierra's part, her acknowledgment that this has gone on long enough, questioning why her life just turned upside down and no one sounded the 'rough weather ahead' warning. I cannot imagine being three or five and having this life changer thrown into my lap. Granted, children don't always have the expectations of things that we do as adults, but realizing that life as you knew it changed from one morning to the next has to be a shocker! My heart is aching. Anyway, Chloe has been accepting most of her feeding through her stomach, a backup every now and then into the nostrils, but mostly doing much better. This is such a positive development. She lost some weight for a few days but seems to be headed upward once again. On the breathing front, some of the her respirations will be more consistently on the lower end where they need to be, but then will bump back up and stay faster. This has remained a concern and has not allowed her to be taken off the CPAP machine that aids the lungs with a bit of pressure. We had hoped as they tested out removal of it for a few hours at a time that it would lead to her leaving it behind. Keep the prayers coming. Yesterday I watched as jennie and the nurse bathed her. Such an ordeal, as all the wires need to be unhooked and tubes placed just right just to put her in the baby bath. It seems a bit nerve wracking also, because no water can ever be allowed to get into the trach tube. But...Chloe LOVES bath time. It seems to be very relaxing for her and she likes the elevated position of her back. We thought that might translate into her liking her bouncy chair, but she seems to be a bit irritated when placed in it. Maybe next time!  

A developmental specialist was in yesterday, watching her for a while. She will write her report and go over recommendations early next week. Her initial report centered mostly on allowing Chloe to rest as much as possible and not to offer too much stimulation. The hearing test has not been completed yet, but the Deaf and Hard of Hearing specialist also came by yesterday and will be working with the family on baby sign language and basic education most likely very soon. There is so much to take in. So much for me to NOT worry about, because I know that it is in God's hands. I used to give Him my worries and then grab them back. Not so much anymore, and I know the situation will be provided for, although even with this belief, my heart does not stop hurting. Maybe that should be my next prayer, acceptance without heartbreak. My soul is surely being tried!

Thank you all SO much for all your prayers and encouragement. Sorry it took so long for this update. Lovingly, Nancy 

Chloe on May 17th

It seems like a lot has happened since my last update. Joe, my husband, has been home from working in New Mexico for a few days, which has helped in so many ways. We have been able to lend support to Jennie and Lance more as a tag team, watching Kadin and Sierra, taking turns being with Chloe, and just offering support to each other. I really had gotten to a point where my body was starting to yell stop! and Joe was here to give me a bit of a break.

Chloe has had some ups and downs since coming to The Children's Hospital. It is hard to believe it has been a week ago today that we made the move. She is in a 'pod' that cares for three babies, and is on a waiting list to be put in a little private room. These rooms are still roomier than where we were previously so even that is a plus.  The staff has been pleasant and is quick to share information and educate when necessary. When we arrived here, Chloe was put on a ventilator to help her use her lungs more efficiently for a while. As I understand it, it aided her breathing as she fighting the infection. She has earned her way off the ventilator, now has something called a CPAP, which offers a bit of oxygen and keeps the trach tube a bit moist and still puts a small amount of pressure on the lungs. So, progress has definately been made in that area. Feeding has been an area of concern in a couple of ways.  Chloe has pulled the feeding tube out of her nose twice since being here, and on Sunday when I was watching her, milk just started shooting out of both nostrils, totally undoing me! The respiratory specialist walked in at just that moment and was able to suction everything away before it caused a problem, but the warning lights did go on. Chloe was observed overnight and x-rays were done yesterday morning. The feeding tube that was sitting just past the stomach in the intestine had snaked its way back into the stomach, so Chloe was sent to x-ray to have it placed correctly. After that procedure, Chloe has to be placed on her side in order for gravity to help the tube get to where it really needs to be and stay there. After about four hours, another x-ray is taken to be sure all is as planned. Chloe decided not to play by the rules yesterday and did not accept the tube as it was placed. It went right back up into the stomach, which was not what the doctors wanted, but since she has not been having a tremendous amount of reflux, may be a blessing of sorts. They have decided to leave the tube in the stomach, hoping that Chloe's stomach has grown enough to actually function. So far so good today.  I sat with her a few hours this morning and held her for a bit. She mostly slept, as any sort of procedure really seems to tucker her out! Her weight last night was 6 lbs. 12 oz. so she continues to gain weight through it all! A hearing test was also attempted yesterday, which Chloe stopped in its tracks with a nice case of hiccups! I believe they might have tried again today, but haven't heard. 

So, onward we go. Sometimes I am very hopeful and sometimes I am not. That is putting it very simply. I know that Jennie and Lance are stretched quite thin, but continue to put forth unending effort to stay positive. Keep those prayers and beams of light and love headed our way. Lovingly, Nancy

Catching Up with My Posts

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

Praying for Newborn Baby Chloe

I Am Baby Chloe

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.