Two Updates in One

June 29th, 2009 I am sitting at my kitchen table this morning with Sierra, my five year old granddaughter, and we are talking about fairies. My mother swears on the Bible that she saw a fairy when she was a little girl What a lovely way to start the day! I have heard from some of you since my last post and want to say how much your offers of help are so greatly appreciated. Sometimes all of this just gets to me and the heaviness weighs on my heart. It doesn't take much though to lift me back up. All of your thoughts, prayers and positive action are all it takes to give me an attitude of hope and renewed energy. Chloe has had a fairly good week, although the trials for weaning her off of the ventilator have not been successful. Her heart rate has spiked over 200 at various times in the week, which is pretty scary and upending when in the midst of it. This is the problem that persists and has not allowed her to go home. She is doing very well taking her feedings through the g-tube, so that part is a blessing. As soon as the breathing issue is fixed, I believe talk of home will become a part of our conversation once again. That won't happen for a while though. This Wednesday, she will have the heart catheter procedure which will determine as much as possible how the heart is functioning. The doctors feel that until the two holes in the heart are repaired, the breathing will be irregular and Chloe is going to need ventilator support. So, if that's what it takes to get the little angel home, we are ready. After the Wed. test, depending on the results, Chloe will have heart surgery on Friday or possibly on Monday. Get your heavy duty prayers ready! At this point, although it is not decided for sure, it looks like it will be an open heart surgery. We all know that will require a much longer healing time and more discomfort for Chloe. It would be fantastic if they decided it could be done without opening her up. What a little warrior she has been! No one can believe how mellow and even-tempered this little one has remained throughout it all. I will certainly keep the updates coming as we go through this week. Sierra has been very patient with me, but I just must go and play this child's Charade game with her now! Then, she goes to work with me for a couple of hours, which will work out well since I am at the Learning Center today. Til later, God bless you ALL! Nancy June 27th, 2009 This is one of those days when I feel extremely emotional and not very positive. I know 'this too shall pass', but the day has not been especially good for me. I spent the past day and a half with my mom, about 70 miles from the hospital and Chloe. She is 85 years old and has her own needs, which are not being addressed as they have been before Chloe. Those of you who are in my age range can relate when I mention the 'sandwich generation." This is the time in our lives when both our children and our parents are in need of us in any number of ways. I have never felt it so strongly as I have the past few weeks. I did have an enjoyable and productive time with Mom, but also went to Jen's house to check on her dog (who is a big loser in the scenario we are living out), do some weeding in her garden (also losing in this scenario) and some additional yard work that there just isn't time to complete. Add to that a landlord who is not in the least bit understanding of the situation and expecting perfection at the house and a hot sun bearing down on my head for a few hours and you get a pretty angry Nancy after a while. I see a family that at times looks to slowly be disintegrating. We are going on 10 weeks here with no particular sign of Chloe going home. It takes a toll on everyone, arranging and rearranging schedules, keeping the family, extended family and especially Chloe covered. We have a small family and not nearly enough help to take care of this situation. I just have to get things moving in this next week! Any suggestions from any of you for bringing community together, fundraising and involving people, please share! as they would be GREATLY appreciated. My brain is on OVER LOAD and I feel as if I am spinning my wheels. I need a point person, if anyone in our close vicinity is willing and able to help, please speak up. I just MUST go to bed. I hope that this makes sense! So, more later. Love to all, and you are soooo appreciated!! More on Chloe specifically tomorrow. Nancy

Progress!

June 20th, 2009

Chloe, Chloe, Chloe. It seems I eat, breathe and sleep little Chloe! She is never a nanosecond away in my thoughts, like the waves rising and falling at the beach, the thoughts have become constant. It is a quiet day at the hospital, a welcome, quiet day. The last week, since the surgery, passed incredibly fast, yet at times the intensity was grueling. I just want this baby to not be going through this, sadly enough, that will never be the story my words tell. We are approaching the nine week mark and thankfully making progress and little by little watching all those nasty but necessary tubes and wires disappear. Yesterday, the arterial line that had to stay in for a while to monitor blood pressure was removed, giving Chloe much more freedom to use her little arm and be assured much more comfort. It was tethered to her arm on a little board so she couldn't pull it out and it looked very irritating to her. She has been pretty medicated, but as of Thursday the weaning of pain meds had begun. She still needed a bit of Ativan yesterday along with some Tylenol to help her settle and rest, but seems to be doing so well! Last night required some of the pain medication again during the night and she has still been a bit restless today, but does not appear to be uncomfortable. The nicest thing is that since the Nissen G-tube has been placed, there is no more tube in her nose! and since they began feeding her, ever so slowly, she has made her way to full feedings dispersed over about an hour. Her tummy is lovin' the nourishment, so that in itself is prayers answered. Remember when the stomach was too small for the g-tube? It growing and accepting the larger amounts of food each day AND her GREAT pooping are all signs that point to the road home! Early next week the trials for removing the ventilator will begin and that is our next big hurdle. That success level of that will be a big determining factor about when she will go home.

So, we still spend most of our time here, although I took some time for myself this week and did a few hours of work here and there. I have really missed my students, many of whom have been with me for quite a while and seem like family themselves. It was good for me to do what comes so naturally in a bit of a routine. Joe, my husband, has returned from New Mexico just this morning. It has been three days since before Chloe was born that he left for work there. Having had his work hours cut in half at his company did not allow us the flexibility we might have had at some other time to have him take some leave from work to help out here. It is going to be much appreciated on all fronts to have him back at home! He'll be back to working half time, but we have lots of things to keep him busy! Ha! The weekend hopefully will pass with no to-do and we will have a quick Father's Day BBQ for Joe and Lance at our house on Sunday. Thanks everyone, for the truly amazing prayer work! It is ABSOLUTELY impacting the outcome here. I hope to continue to reach more people, I just keep having this feeling that reaching that 1,000 people mark is going to be significant! Please continue inviting everyone you can reach. Hoping you all have a restful weekend. I'm going to go have a little chat with Miss Chloe, who has just woken up from a nice nap. Lovingly, Nancy

Some Pics

Chloe Recovering From Saturday Surgery

Whew! Made it through another bump I think! I have started to breathe again, thank God! Yesterday Chloe showed signs of recovery that were positive and although meds and other things needed to be adjusted quite a bit the last few day, she is now doing well. The pain meds were backed off a bit by afternoon and she had had some awake time on and off throughout the day. I didn't get there until about 5:00 yesterday, Jen had taken the other kids to the Ronald McDonald House and when I walked in, there were Chloe's big eyes searching the room. What a beautiful sight that was! I got to hold her hand and sing to her a bit, but she had just been given some Ativan and soon drifted off back to sleep. She had some color and just looked so much better. We have been through some scary times with that little one and I really pray that this recovery goes smoothly from here on out! It is quite possible she could be held for a while again today, mommy needs that as much as Chloe! They will begin trying some feedings, very small, in the g-tube soon, and once she does well there the ventilator weaning trials will begin again. There is a lot still to do before she can go home, but we may be looking at 2-3 weeks. That will be a glorious a day. Pray that all the steps that lead to home come easily now. Jennie felt comfortable enough to leave last night and we spent some time getting she and l Lance new phones. We took Kadin only with us for some one on one time and actually fit in a few laughs. Every time that you enter Children's Hospital, you have to stop for a visitor pass. They scan your driver's license the first time so a new i.d can quickly be printed each time thereafter. It mostly shows up with the picture and your name in large letters. So, when I was taking care of phone contracts, the salesgirl asks for my i.d. I started to rifle through my disastrously messy purse for it, she looks up, sees my name tag, and says," Oh! You have it right THERE!" It was a very funny moment that had Jen and I laughing til tears came. Who EVER wants to wear their driver's license picture on their shirt for the world to see??? We needed that laugh so badly. Funny how you never know what's coming to lighten the load! It seems impossible that we have been at this for two months now, sometimes the days and nights seem to go on forever, but looking back, it seems like blur moving at warp speed! That was April, this is June, where did it go? Time seems to lose its relevancy, as do many other things, things I think a lot about these days, but will write about another day. Gotta go for now. Love and blessings to each one of you! Nancy

Surgery Update-Long day

June 14th, 2009 Late Night

It has been a long day but I felt compelled to report on the day's events. Due to several complications, the surgery took a few hours longer than expected which had our family on pins and needles for a bit of time. Having to open her tummy up was something we had hoped would be avoided, but that is not what happened. The G-Tube could not be placed without the larger incision because of the enlarged liver, but it was placed, and in a few days, hopefully, Chloe will be being fed that way. It is GREAT to not have a tube in her nose now! The two holes in her heart have been determined to be having more of an impact that originally thought, especially on the volume of blood that gets to the lungs. It will need to be repaired down the road at some time. Chloe's oxygen level dropped as low as seven, but only briefly and it was decided to put a arterial I.V into her heart. This allows the nurses to monitor her blood pressure at all times and if blood draws need to be taken, they can use it. It is sort of crazy, cause it is actually stitched on to her inner wrist with three stitches, because it must stay in place. Chloe has been very good at hooking a finger around her feeding tube and pulling it out or pulling on the ribbon around the trach tube, Just a little Houdini in the making maybe! That will only stay until she is stable, hopefully a couple of days. 
She also required a blood transfusion. When she returned to the room, it was quite some time before they could get her really comfortable. It was quite obvious that she was experiencing pain and it was difficult to calm her. Pain meds were finally doubled and she settled in to sleep. Poor little thing, what a long day for her! It is my prayer tonight that she sleeps well and that they have gotten ahead of the pain. On a positive note, the ventilator settings that helped so much the last four days to get her moving past that ghastly, scary time, have remained the same. No changes have been necessary. Now, Chloe needs to rest and heal and try to get closer to going home. Her mommy and daddy just want to take her home. Speaking of kids and home, I brought Sierra and Kadin home with me again tonight, as Lance had to leave to go to work in the morning, and Jen needed to stay overnight in the room with Chloe for both own good! We make our adjustments on a daily or hourly basis. Never have I been so understanding of taking each day as it is given to me. It really is what we have, and kindness, love, sharing of ourselves and resources, counting our blessings and LIVING THE DAY is all that matters. Thanks to you and your encouragement and stories because this is MUCH easier to do knowing you are all there.. God bless each and every one of you, and may you live tomorrow like it might be your last. Lovingly and with 
leaden eyelids, Nancy

Chloe Heads to Surgery

JUNE 14, 2009

Chloe is in surgery this morning so add another layer to your layers of prayers. Ha! Whatever that means! Just trying to keep it light right now so I stay out of worry mode. She is finally well enough to have the g-tube placed into her tummy. I have never seen one so it is hard to explain. but it will allow her to be fed liquid directly into her stomach through a little tube with a button on the outside of her tummy. Jennie actually met someone at the zoo who had a son who had one! He took the time to explain it to her right there! Many angels have been placed in our paths since this journey began, that is FOR SURE! She also is having the esophagus and stomach attached at some point, to help that little muscle have a little more strength. There is some scar tissue that developed from the first intestinal surgery that docs are hoping to remove that hopefully will allow food to pass through better also. So, little Chloe continues to carry on, with all these prayers, how could she not? I can't even imagine how many people are praying. People say they will talk to their whole congregation about Chloe and the number grows and grows! So, I'll let you all know later how she is recovering. So far, this is quite an amazing story, I do believe that little Chloe is being guarded by legions of angels! Lovingly, Nancy
P.S Update on surgery as I write. Surgeons could not do procedures by laprascope because they found the liver is too large and Chloe had to be opened up. Sad development. Just complicates recovery hopefully. She has mostly been stable but has experienced a few bumps. I will keep you posted!

Chloe is Rallying!

June 11. 2009 Quick update tonight as many of you are concerned and asking about Chloe. The past two days have been much better, having made it through the three scary ones before that! Ventilator changes have been made a few times, and Chloe has stabilized a bit more again. Chloe also had begun to spit up much more of her food and just wasn't doing as well at all there either. Her color was very pale and my daughter was very scared ! After the breathing, infection, and feeding difficulties, it was all about wondering how much more Chloe could endure. She had to be taken off the feeding tube and be given the continuous feeding drip again, a backward step. So, today, an upper GI test was done, and it has been decided that her tummy has grown and she may be getting close to the g-tube placement. I hear this is very positive! The test did reveal that the possibility of the reflux causing the elevated respirations wasn't correct. It is thought that it is more likely those little holes in the heart. They will try to treat this with medication and see what happens. Success would be fantastic, as a heart surgery could be avoided! All in all, the roller coaster got fairly intense this week. Someone added a few unexpected dips and widened the curves! I truly believe, with all my heart, that these prayers, the love being sent my basically strangers, the words of encouragement and sharing of stories...they are ALL making a difference. Please keep them coming! Love to ALL! Nancy

Chloe has Been Sick

June 2, 09 I added a couple of pictures, I thought I had a few more recent ones but couldn't find them and I am tired now. These were actually taken right before she got this latest infection and she did look pretty alert, as one of my friends commented. Unfortunately, we haven't seen her that alert for about a week now. A staff infection was found in the trach secretions, which they say is fairly common, and today the culture for the urinary tract infection came back positive. So, it was good that the broad spectrum antibiotics were started a few days ago and I believe that they may have begun a different one that will work more specifically on the UTI. She has been pretty sedated in order to allow her to use her calories more effectively, not just for all that hard breathing. She continues to be on the ventilator and really is no worse or no better as of this evening. I guess she is just in a holding pattern of sorts. She has gained some weight, and the night before last was at 7 pounds. This is certainly positive news. Jennie tells me tonight that it is anticipated that she will lose some again, as they are going to begin a medication to dry up the fluid that is being seen in her lungs, so we'll see how that goes. I know this report seems fairly cut and dried and that is because it is! The psychological drain has taken a bit of a toll the past few days, as we have watched Chloe struggle and remain much the same day to day. It is hard on the heart to imagine what she must be feeling, knowing that what is being done is the best that can be done for her...just not enough. So, I write facts. Keep praying. Chloe needs all of you. Lovingly, Nancy