Thursday, October 29, 2009

Need Prayers Oct. 29th, 2009

Oct. 29th, 2009

I really am at a bit of loss for words at this time, but need to share the past few hours and ask for added prayers. Jen got a call from the doc about three hours ago telling her that Chloe had been lethargic and the soft spot on her head was protruding, leading the doctors to believe that there was fluid amassing there. A CAT scan had been ordered and they were waiting for it to be completed and read. In comparing it to a previous one done at some point, it was determined that a small amount of fluid had been seen before and that maybe it would not be of consequence. A neurosurgeon who needed to view it was on his drive home and would check the results as soon as he arrived they were told. We waited and the next call I received from Jen she blurted out,"Chloe is having brain surgery at 7:30 in the morning. They are going to put in a stunt or something. I'm just in shock and don't have many answers." Of course, our stomachs dropped to our feet as yours probably have and we quickly discussed a plan for the morning. Joe and I both jumped on the internet, searching for any possible information we could come up with and in a few minutes the phone rang again. This time Jennie blurted out, "No surgery in the morning!" and I heard a huge sigh of relief. As it stands, at some point, Chloe was sat up and the position change seemed to make a difference in whatever was being looked for at the time. So, as far as I know right now, Chloe will be watched and studied (what's new about that!) and for the moment things have settled down. This incident only raises questions tonight and none of them will be answered right now. These are the nightmare scenarios that can become reality as sure as the sun rises in the morning. These are the things that we pray never happen. This is just one thing that cannot happen if Chloe is to go home in just a few weeks time! We have sighed a collective sigh of relief for now, but if my daughter is anything like me, it just puts us back on alert instead of remaining in a bit of a dreamlike state, believing in magic and fairy dust and the belief that nothing else could go wrong after all these many months. Living the magic moment for just a while has been good for all of us. Being thrown into the realistic madness of our Jekyl/Hyde experience isn't a good time, my friends. Please send renewed prayers for our good Lord to take good care of our little Chloe and to lessen the madness for all of us who love her so dearly. This has been one scary night and we ever so mightily need to return to Pixie Hollow

Wednesday, October 28, 2009

Chloe's Transitioning to Home Continues!

Oct. 27, 2009 Well, well. It has been too long since I have updated you all, but life has a way of derailing the best laid plans, I'm sure everyone here can relate to that! It is a good thing that I have waited though, because since my last post the pervading attitude of the transitional period has much improved. I guess any big change causes some stress, and when a change this big comes around, the stressors also loom larger. This is Chloe's life, the 20th was actually her birthday six months ago! Seems quite unbelievable that we all have that time behind us; all the thrills and chills, worries, celebrations, hitting the knees double and triple time, in both prayers for strength and courage and prayers giving praise and thanks for the unending gifts we have received. With the illnesses and surgeries behind us, who wouldn't have the HUGE expectations we have for Chloe's well being at this point in time? Spring, summer and fall have gone and Chloe is not yet home. She is doing so well though and the thing keeping her from leaving the hospital is waiting on the home health care. This frustration is still there, but Chloe growing and staying well has softened the blow of waiting even longer, and the staff on her new floor has taken note of level of concern in keeping her well while she is in wait mode and are taking good care of our little Warrior Princess. I wonder how that all would have gone without the added bit of chaos at the beginning, but somehow I am convinced that it all happened just as it was supposed to and that Chloe is much better tended to because of it. So, big news of this day is that Chloe, sleeping soundly, made her way into the world today! Yes! She was bundled up, placed in her car seat with the ventilator attached to the stroller part and was strolled right out the door into the crisp and somewhat gloomy Colorado day! She was taken to the family van and taken on a car ride! My heart just flutters a bit as I imagine the excitement and at the same time, seriousness of her parents methodical placing of Chloe and the equipment into their car! The respiratory therapist was there for the ride, but the whole thing went off without a single alarm ringing out and Chloe staying soundly asleep! So, her big day out basically went without notice by Chloe, but not by all of us! I was unable to be there, but anxiously awaited the results. Jen noted that Chloe did raise one eye a bit as they walked into the day but quickly closed it. She also must have felt something a bit different as she was placed into the car, but nothing much to note for her, as her little peek was it and a peaceful nap followed. Another big test was passed on this day, all of these milestones lead Chloe down the path to her life at home, surrounded by her loving parents and ever so interested and lovely siblings! The day is coming friends, and it is not long now! It may be as late as Nov. 16th, as we continue to wait for nurses to be hired and prepared for Chloe's extra special needs, but it is worth waiting for! We ask for your continued prayers, we ask that you continue to invite positive and loving people here who share our vision in making Chloe's life wonderful and who would like to take part in helping her to become only the best she can be! We have had excellent care, amazing surgeons and doctors and the best nurses on the planet for much of her life, we have met friends who have appeared out of nowhere and given time, money, encouragement and love. We have, and continue to have the Greatest Healer of ALL on our side, our Lord, who sent us Chloe and most definitely has major plans for her life!! We will continue to need each one of these components for years to we will build on what we have now. Thank you, each one of you, for what you have given to this ever so remarkable baby and her family. So many have gone the extra mile to bring smiles to our faces on the most difficult of days. Thank you from each one of us!! All our love and blessings to you! Til next time, Nancy P.S Hopefully, tomorrow we'll get snowed in and I'll have some time to post pictures!!! We're well on our way as I write this!!!

Sunday, October 18, 2009

Chloe's First Week Outside the NICU

Oct. 17th, 2009 I thought that I would try to get a short update out tonight before I head to bed. There have been so many situations taking place in this family's life the past few weeks, each one carrying its own level of stress. It has been difficult to keep my mind on writing and even more difficult to find the energy at the end of the day to compose a note when the days all run together and time has not been on my side. So, I'll give it a shot and most likely follow-up soon. First, before I say another thing, let me say that Chloe is doing quite well. She has had a few difficult breathing situations this week, but other than that she continues to grow and is developing quite well. The highlight for the week is probably her ability to determine by some sense, (not sure which one exactly), if she knows and trusts someone who walks into the room... right off the bat. If Chloe thinks for a second that she cannot trust someone, she IMMEDIATELY closes her eyes and plays possum!!! Literally, she will pretend to be asleep, slowly peeking out of an eye or two and making a determination whether she will engage or not! Isn't that just too clever? She is pretty consistently turning from side to side and engages in so much more play! My claim to fame is teaching her the high five, which she has been doing with me for a few weeks, but has now made the leap to playing with others. Jennie said yesterday she actually high fived a doctor who came into the room at some point. She is getting a lot of positive reinforcement on this one, which of course leads to her doing it more. What a smart and funny girl! So, this transitional phase for Chloe has not gone particularly smoothly, and that really is putting it mildly. There has been a tremendous amount of frustration with the hospital, the different level of care and the home health network. I won't go into a lot of details, but when Chloe was moved, the home health company in Ft. Collins gave Jen and Lance the impression that as soon as they had the go ahead, they would be ready for them. You all know how hard Chloe's parents have worked all along to learn as much as possible about her condition and treatment and that there are certain experiences that need to be checked off before they can go home with her because she is on life support. These include a complete understanding of the workings of the home ventilator and what to do in any conceivable emergency. It was felt pretty early on that they would be able to pass these tests pretty quickly and that the mid November date was really stretching out the release date. By the second day on the new floor, Jennie was hearing that it was quite possible that they would be there two weeks and be shown the door. At that point they were told by the home health agency that they were not ready and that it could take up to a month in order for them to have the personnel necessary to care for Chloe at home. Talk about disappointing. Let's take a step back and recall what the move to the transitional floor was expected to look like. 1. Chloe moves, Jen and Lance are expected to be there many, many more hours, as nursing time will be lessened in order to give them the hands on time they need that will simulate the home scenario 2. Jen and Lance are each expected to do a 24 hour shift independent of each other 3. Jen and Lance arrange for a two week time frame when friends and family will spend the majority of the time with Chloe's siblings, as they are now not allowed on the floor or in the room with Chloe because of flu season 4. Chloe's time with her parents will be spent learning the portable ventilator, testing out her car seat, taking strolls inside and outside the hospital and even having a car ride to ensure the safe transition to home So, where do we actually stand in the scheme of things? Not too far at all! Jen and Lance had some training on the portable vent, Chloe passed her car seat test and did get one stroller ride down for an MRI, which was not expected and upsetting to her parents. They used up about a week of their 'planned' daycare, spending days and nights with Chloe out of concern for her medical safety. Coming from the NICU, where the highly skilled nurses are two babies to a nurse, to the level of nursing care the first few days on the transitional floor has been concerning and literally quite scary. Imagine being a parent during a serious breathing episode being turned to and asked by a nurse," What should I do?" Imagine being CHLOE'S parents, after the past six months of unexpected illnesses, having a resident doctor walk in your room with a mask on, no gloves, not stopping to wash her hands before taking her stethoscope out and listening to your baby breathe...then being asked by the baby's mother if is she is SICK and getting the sarcastic response," Hence the MASK!" Just IMAGINE, if you are my daughter, how YOU would feel. Angry? Horrified? Astounded? Shocked? These words really coming from a Dr. after being told earlier that there were nine cases of confirmed H1N1 on the same floor? Well, my initial thought was what happens when a person gets in the middle of a mother bear and her cub. I'm sure that many of you mothers out there are feeling an iota of the feeling right now! I have it not only for my special needs granddaughter, but also my daughter, in this case!! Nothing even CLOSE to that ever happened in the NICU. They were, each and every one of the people who walked into Chloe's room so very, very cautious and careful about germs and this level of concern should be no different any other place in this hospital. Period! So, after having had many of their highly anticipated expectations shot to hell in a few days time, that was pretty much the last straw for Jennie, with Lance not far behind. Jennie demanded the 'sick' doc leave the room, angry words rang out and chaos ensued. It wasn't pretty, but in my estimation, with the severity and complicated nature of this baby's life so far...not unexpected. My daughter and her husband are human beings, with human feelings and human breaking points. They were pushed to the breaking point his week and some floodgates of frustration and fear were opened. After expressing concerns all week long and feeling that they were not being heard, or even listened to in the first place...having home health care extend their stay after being assured that they would be ready for Chloe...not having the experience look anything as it was told to them...well, it just didn't make for a very successful week of transitioning. I can report, that by the end of the day Friday, compromises and negotiations were made that benefited Chloe and her family. The nursing has been stepped up, the concerns addressed and hopefully Chloe and her family will all feel some peace at the end of each and every day that they remain there before going home. All anyone wants is for Chloe to be safe, for her parents to be in one piece when they leave there to carry on many a year of care for Chloe, that her siblings feel loved and cared for throughout the entire experience and that every day holds smiles and hugs and love, love, love. So, keep the prayers coming fervently, as you just never know where or when they might be needed. Yes, we all gave sighs of relief and celebrated Chloe leaving the NICU. Hopefully, her time spent outside of it before going home will be shorter rather than longer. Seems like a mighty wild ride about now! Don't forget to keep inviting friends! We need each and every one of you and the group is fast approaching 3,300!

Love and laughter,Nancy

Monday, October 12, 2009

Chloe Leaves the NICU!

Oct. 12, 2009 Day 1! Chloe has just spent her first day ever out of the NICU! Yes, yes, yes! April 20th to October 12th...seems like this day would never come, but it HAS! Jennie arrived early at the hospital this morning with great anticipation, not knowing exactly when she would rise up and out of the unit but knowing it would be THIS GREAT DAY! I think it was about 2:00 this afternoon and one of our favorite primary nurses, Jenny, was there to make the trip with them. They really do think of every aspect of a child's life at this hospital and noted how important it was for Chloe to have a familiar nurse for a while in her unfamiliar surroundings. New nurses were also waiting in anticipation to meet Chloe and it all happened without a hitch. So, it has been a very successful day and Jen reports that Chloe didn't really seem to notice much being different! As these days of transitioning get rolling, she will certainly experience many new things! They will now be able to move her about the unit, take her outside, will have to take her for a little car ride and lots of other things that get absolutely taken for granted when you don't have a sick baby! Jennie and Lance will basically be doing all of her care just as they will be expected to do when they really, really, really go HOME! They have been watching and learning for a good many months now and although there must be a bit of trepidation, they are mostly feeling excited, competent and ready to go! Chloe has been such an amazing little warrior, hasn't she? I know that we have all been scared to breathe at times because of the seriousness of issues and the seeming inability to go just a few days without a new problem surfacing. Now, the feeling is just different, entirely different. Chloe threw off that last virus and headed into the home ventilator trial with the opinion that it was time to show everyone what she could DO! Although it was felt it might be too early, that maybe she was still too small, the Warrior Princess never stumbled in this attempt to make her way home. Things changed when school started for Sierra. The kids weren't there so much, then on Oct. 1st, the unit got closed to siblings visiting because of the flu threat. I believe in the depths of my heart that she heard all of our voices in unison encouraging her to be well enough to go home to her family, because her family would have less time with her. With God, all things truly are possible. This child, this very, very special baby has brought so many new and beautiful people into our lives. The journey really does begin with a few steps and having this tremendous amount of support in prayer and good wishes has often pushed us past and through the hardest parts. Now, with continued prayers for success and the love of so many wonderful people, we need to celebrate this moment together! Chloe's release date is dependent on how soon Jen and Lance get signed off on a list of must know things, it could be as early as next Tuesday or may be a bit longer. I know you will all keep your prayers in priority status, as this is just as critical a moment in their lives as any up to this point. I love this family, the courage and fortitude blow me away! Thank you all for the help along the way. I am very busy with many responsibilities these days and unable to write quite as much, but will absolutely keep you all updated as much as possible! God bless you all! Nancy

Thursday, October 8, 2009

Preparations to Go HOME!!!!

Oct. 7, 2009 Sometimes when I sit down here to write these updates and look at the date of the last one I am no less than astounded at how much time has passed! I know that I posted pictures a few days ago but had no idea it had been a week since I'd updated! Life is hectic and more than a little chaotic lately and my time for writing seems less and less. I apologize. If you are on my Friends page, you probably get a few more snippets of information, so if you'd like to do that feel free to send me a request and I'll get you on the page. Chloe, our little Warrior Princess, is forging ahead! There have been a few incidents with her breathing since the ventilator switch, but I guess this is to expected. It is better to know the glitches before she heads home than after, for sure! She is growing and warding off any of the viruses or bacteria that have plagued her in the past and the plan for discharge is moving full speed ahead! Monday is the day for moving to the floor which will help to transition her home. When the conversation began in ernest about discharge, the day was set for the 16th of October! There are many tests that her very proud and happy parents must pass in order to walk her out the door, but they are both up to the task and rarin' to go! Today some time was spent with the respiratory therapist taking apart and putting back together the ventilator, tomorrow they will practice other situations that they need to be prepared for, such a s bagging Chloe if need be in any sort of emergency situation. This is nothing all of us haven't seen and feel we could do, but under pressure and possibly alone at home would make it more necessary to have it just be more of a typical maneuver. (If it could ever be considered that I suppose!) Much of the things that parents have to learn before these babies can go home, Jennie and Lance have being doing for months now! This includes changing out the trach tube, suctioning her airways several times a day, bathing her and making sure no water gets into the trach tube, doing much of the care themselves! I believe that Jennie feels that it has gone unnoticed by some of the staff how much she already knows and does. This has frustrated her a bit, but Chloe knows! When she is there beside Chloe all day long, she is already confident enough to take care of most of her needs throughout the day. Being ahead of the curve here is all important, because it could get Chloe home even faster. Many, many parents have never experienced a baby with Chloe's complications (actually, staff either!) and when they are in the hospital, they allow the staff to take more of the responsibility, or may not put in the hours that we have all diligently made made part of our lives. Therefore, when they get the go ahead that discharge is on the horizon, there is much to do. I do not believe this is the case with this family. Jennie and Lance are both very bright and I'm not sure I have ever met a more observant person than my daughter! Since she was two years old she has been developing that skill and rarely does anything escape her! Lance seems much the same and they are both ready to take on the new adventure of welcoming their little princess to her home! So, we will see when the actual date occurs, but don't be surprised if it is sooner than later! As they are tested on their knowledge, thay will be spending more time at the hospital and that means less time with siblings Kadin and Sierra. This will be difficult on everyone, but the little ones are no longer allowed on the unit because flu season has arrived. I will help as much as possible, as well as Jen's friends and family that we have nearer to Ft. Collins. Family time will certainly be disrupted but just temporarily, and in the end...a brand new intact family will reside in one home in Ft. Collins! Praise God from whom all blessings flow! It seems impossible that Chloe is almost six months old! The ups and downs, the fears and cheers, the bended knees, the tears, the smiles, the dread, the anticipation, the encouragement, the new friends and family and relationships forged, the enlightenment, the disillusion, the healing, the sickness, the love, the loss of ones counted on, the feeling in the gut when the right thing isn't being done and the feeling in the heart when it all goes! What a trip it has been. To get Miss Chloe out of those hospital doors and into her own home and the loving arms of her family will be the first completed leg of this all important journey. The following chapters will take on lives of their own, as this story will continue for years to come. But now, this moment, all is good. We are grateful for each and every prayer sent by each and every one of you. Can you even begin to imagine the numbers? 3,200+ people just here, speaking and praying on Chloe's behalf who knows how many times in a day, congregations all over the globe adding their voices, friends of friends learning the story and sending their best wishes and prayers. All of these things have kept Chloe ALIVE and have kept all of us SANE and prepared to go the next mile, or ten or ten thousand. Please keep it all coming! There are big days still to get through and now we need her to stay healthier than ever and be ready to rock and roll into the real world! My updates will come as we get closer! Thank you, everyone, for all you do!!! Love to all with my greatest feelings of gratitude!!! Nancy