December 31, 2009 - Discharge day from Blythedale!

Chloe's home! We wanted to share this with all who have followed Chloe's progress through this terrible illness. Our deepest thanks to all who have helped us work through this very difficult time the past 3 months. A very special thank you to all the therapists, nurses, physicians and social workers who have treated and cared for Chloe. We don't know how we would have managed without your love and support. From our family to yours, thank you and have a wonderful New Year!

Please follow this link to view Chloe's Journey.

www.facebook.com/video/video.php?v=264436780434

Much love, Rethier, Michelle, Olivia & Chloe

Christmas Day!

Merry Christmas All!

So we did get our Christmas wish of taking Chloe home for the holidays....sort of. Two days before Christmas Chloe was unable to hold down her feeds and would subsequently throw up all of her formula. This was happening every feed so the team at Blythedale decided it was in Chloe's best interest that her feeds be slowed down and given continuously with only one hour break between feeds. They also decided that it was best that she return to the hospital after Christmas so that she can have a GI (gastrointestinal) consult if the vomiting continues. Very bitter sweet in the sense that we were able to have Chloe home for Christmas but all the while knowing that she will have to return Saturday evening.

Of course, we are saddened that her discharge from the hospital is not permanent - but we do know that this is definitely in her best interest. We want her home for our own personal selfish reasons. I'm sure you can all understand our position.

That being said, I'm going to end this so that I can spend time with Chloe and our wonderful family! Happy Holidays, Merry Xmas and we wish you all a safe and happy day! We love you all and wish you and yours nothing but the best!

Rethier, Michelle, Olivia & Chloe

December 21 - Blythedale - Day 32

I can’t believe that it’s winter and Christmas is upon us. It doesn’t seem too long ago that we were at the park and putting Chloe in the swing for the first time. I cried the other day when Olivia pointed to the park we went to just two weeks before we came to the hospital. It’s a park we would go to on Saturday morning when we weren’t out by my parents. I remember sharing a popsicle with Olivia and putting the two girls side by side on the swing set and taking pictures.

We have tried our best to get ready for the holidays. I took the past few days to be home with Olivia. It was my first time home in three weeks. It felt different. It was nice to be in the apartment but Olivia and I both felt something was off. We kept to her routine – I took her to school and went to her Christmas party as I’ve always done. She was so happy with her friends and jumping around. That night I had a surprise waiting for her – a Christmas tree and a homecooked meal (I haven’t really cooked since October). Olivia and I put on Christmas music, decorated the tree, and then ate dinner by candlelight. It was a really nice moment but sad at the same time. There was a quiet feeling to Olivia that night. There was a quiet feeling to me as well. So, we treated ourselves to some cupcakes and snuggled a bit on the couch.

While I was at home with Olivia, Reth and our team of doctors, social workers and therapists were working hard to make a Christmas wish come true. We had said since the beginning of our time at Blythedale that, if at all possible, we wanted to be home for Christmas. Chloe has been showing improvement throughout and though she can stay longer, our team has pushed for our discharge date. We are all cautiously optimistic but our plan seems to be headed in the right direction. With the great help of our wonderful physical therapist who has been there for each and every one of us throughout our stay, social work was able to put through paper work to approve 5x/week therapies in our home. Chloe will qualify for Early Intervention services through NY State but it will take about 30 days to process her evaluations. In the interim, Visiting Nurses Service will provide her therapies. We will have a family meeting tomorrow to talk about our discharge plan and finalize our stay. Already we have received our medical supplies to have Chloe at home and will make arrangements to come back and have her fitted for a brand new stroller in the next week. A lot is riding on the paperwork and this meeting tomorrow and we hope and pray we hear good news.

We will keep you posted over the next couple days but our tentative date of discharge will be Christmas Eve. Chloe has had a nice few days with Reth. He was able to spend some time with her during her therapy sessions and see how far she has come. I, too, saw a different baby girl after being away for a few days. Chloe is much more alert these days and she is soothed more easily. Still, she does not enjoy being moved and being repositioned but she is easily calmed and more willing to engage. She has gained much more head control which we notice when she sits upright in her stroller or chair, or even when we hold her in our arms. Her sleeping pattern has also changed a bit for the better. We decided to give her a small dose of Melatonin to help her with her sleep cycles and she has been much easier at night. Also, we have brought her Phenobarbital dose down a bit more since her blood levels show that her body is reacting well to the medicine changes. We have pushed Chloe and ourselves to make it to Christmas and though her stay can be longer, we feel that we have given her the greatest start and now we need to bring her home and continue her rehab as a family and rebuild our life together.

We hope and pray that our Christmas wish will come true.

Much love and thanks,

Michelle, Reth, Olivia and Chloe

December 13 - Blythedale - Day 24

It was an uneventful week for Chloe. I know we can't always expect to have an upward slope in our road but we kind of tapered a bit as Chloe began to show signs of her sleep schedule changing again. Most nights this past week, she has been awake until after midnight and would sleep during the first part of the day. This obviously posed a challenge for her therapists in that she was not alert enough to participate in their tasks and Chloe would become agitated by being positioned and moved around when all she wanted to do was rest. In truth, it was a hard week to witness. I know there will be ups and downs but she fussed, cried, fought and slept through many of the things we saw her do days before.

It is a battle. Some say she has been through a traumatic experience and her brain and body need to rest while others say that we need to wake her every so often so that she begins to anticipate the routine of her day. Both sides are right but where is the medium? One of the biggest signs we need to watch for is her sleepiness as this would indicate possible increase of brain fluid and pressure or her shunt not working properly. It's so hard to know. I think back to when the girls were newborns and how they would sleep most of the day and only be awake for a couple hours at a time, if that. That seems to be where we are. We are trying our best to follow Chloe's lead while trying to nudge her into some sort of day and night routine. We are back to swaddling her at night which she always loved anyway so we hope that in the next few days we will take another turn and continue on our climb.

Don't get me wrong, the whole week was not completely void of any positive events. Chloe has shown us that she has a bit more head control. She has been having a lot of tummy time since we have been here. Using a big yoga ball, Chloe practiced bringing over and controlling her body as we helped her roll from back to belly to back. She would cry because it was hard work but she did it over and over again. She brought her head up, her shoulder and arm over, and cleared her airway. Being on the big ball helps to take the pressure of gravity pulling down Chloe's head so with just that bit of help she is able to find success. Chloe also sat in a swing later in the week. Though she was asleep for most of this, Chloe sat in her tumbleform on a platform swing and enjoyed the motion of being slightly pushed forward/backward and side to side. We didn't use any towels to prop her head; she did it on her own. When she fell into a deeper sleep, her head would fall slightly to the left, but most times she would find her midline on her own. A great sign was when she even brought her hands together independently.

We pray and hope for more moments like this during the coming week - for a well rested baby at night and a more wakeful and playful baby during the day.

Christmas is coming soon, today is her 10 month mark and I pray and beg with all I have left in me to be witness to... well, I don't want to say miracle because I know that I've already been granted that - I have Chloe next to me. But what I would do to bring her home... I even take a step back - what I would do to see her smile and beam and be happy. It has been a hard week to hear her cries and whines. I go back to the days when I always prayed that I have a healthy and happy baby. Healthy we are working on and have a plan but I have not seen my little girl smile for over two months and, well... it hurts. I look into her eyes when I hold her or as she lays in front of me as we play and I can see her eyes shine but I wait in heartache to see her beautiful, big smile come back to me to let me know things will be okay.

A lot to ask... I know. She has been through a lot and has shown such improvement and believe me, I could not be more proud or feel more blessed for what she has overcome but like I said, it just... hurts.

December 8 - Blythedale - Day 19

Two months...

It's still a hard reality to stomach. It still feels like a nightmare and we still wish and hope we will wake up one day to find ourselves back at home altogether. Will we ever wish any different? Probably not.

We try everyday to keep moving forward and stay strong for our girls. Chloe has had an exciting couple days this week. Towards the end of last week, her speech therapist began experimenting with different smells and various flavored oral stimulation tools to observe how Chloe reacts. She seemed to enjoy lemon flavored swabs and showed great movement and coordination of her lips and tongue. Yesterday, we attempted her first taste with rice cereal. Before getting sick, Chloe had been eating all cereals and purees and thoroughly enjoyed food so this was very exciting. At first, Chloe played with the mush and cupped her tongue as if she were searching for a bottle nipple but in the end was fairly successful in accepting a small spoonful of rice. She demonstrated a good swallow and seemed to like the taste. This morning, we tried again but were not as successful since Chloe was much more tired and agitated but she was still accepting the idea of food so we are headed in the right direction.

Another positive step we have taken is a change in her seizure medicine. Last week, Chloe was put on an EEG to monitor her brain activity. The electrodes were only placed for half an hour but the final report showed no seizure activity in the short time and her blood levels came back with good numbers. The neurologist here was able to take Chloe off one medicine, Topomax, and increase another called Keppra to make up the difference. Keppra has less side effects and is a good medicine for long term use. Starting today, we are also lessening, very very slowly, Chloe's Phenobarbital. This drug is her strongest seizure medicine and the one with most side effects and not great for long term use. It is difficult to wean a child from this particular drug because it needs to be done very slowly so that it will not induce the chance of seizure nor increase the chance of withdrawal. Tapering off Chloe's medications is a bit of a guessing game because it all depends on how her body reacts. We are closely monitoring her alertness, movements and behaviors and hope and pray that she continues to do well with the adjustments.

Physically, Chloe continues to build strength. She shows a little more control of her body each day, though we still have our battles of crying and protest. She is still healing and trying to find peace with her body but slowly, slowly...

An update on Olivia:

We have to say that we are so proud of Olivia. In these past two weeks, we have not heard her complain. Don't get us wrong, she cries for whichever parent she is not with and cries for her sister - she misses her family being together but what three year old wouldn't? But, what has stuck out to me the most is that she is really happy to be visiting her sister at the hospital, being with her at 'school' and walking around to see the different classrooms and therapy rooms. She has not asked any questions about the different chairs or toys or pointed out how people look different. It amazes me! I've been waiting for her to approach the topic of differences but she has accepted this world as a norm completely on her own and I am proud of her. I'm sure the questions will come at some point but if you could see how she lovingly and very proudly keeps Chloe company and plays with her on her mat or follows next to her stroller without a thought in her mind, you too would be amazed. The only time she has ever pointed out something is when she called one of Chloe's trial strollers a 'funny stroller' but that was only because it had a polka dot canopy that stood up high unlike other strollers. The canopy was the only thing that stuck out to her, not the wheelchair part of the stroller. And to put this into perspective for you, she calls any car going in reverse a 'funny car' so really she's not pointing out much.

Like we have said (and have been told) a number of times, children are very resilient in more ways that we can ever imagine. Reth and I have been strong but our girls have been inspiring.

Much love and thanks,

Michelle, Reth, Olivia and Chloe

December 6 - Blythedale - Day 17

After two weeks living on the yellow unit, we completely broke down in front of the administration and said we had enough. We have been somewhat sugarcoating the reality of being here but the truth is that we have been really unhappy and more than a bit disconcerted with several things, but mostly the nursing care on the yellow unit. We still remain very positive about the therapies that Chloe has received and are confident in the team that has been put together for her but when their day is done or the weekends arrive, we have a very different feel for this place.

Our PT had been aware of some of our problems and had brought it to administration. After a 4 page complaint, a meeting with the Patient Care Director and Social Worker, and a pending meeting with the higher administration, we have been moved to a different unit - the green unit which is the unit we had seen on our tour and were initially impressed by. We are now in a room with three other small babies with a nurse who is in the room most of the time. The nurses station is right outside the room and they are easily accessible. There is also continuation of care here so that when a nurse is working a few days in a row, then we will have him/her return to our room.

This has been a good change so far. As soon as we began moving our things, we were immediately greeted by Chloe's nurse, and other unit nurses even came in just to say hello. We were told there are no fruitflies here on this unit, there is a fairly empty refrigerator where we can store food, there is even a LOCKED shower room (oh, if you only knew what we had beforehand). The day and night nurse we had in the first 24 hours of our move seemed to be well beyond competent and we felt more than comfortable leaving Chloe for a dinner out with my family. Yes, this is the first time we have felt that Chloe was safe to leave for a few hours and have some time to enjoy ourselves. As we sat with Olivia and my family over a nice dinner, we didn't worry, we didn't panic, we didn't rush. It was refreshing and way overdue!

We hope we have not spoken too soon about the positive change. One of us will still remain by Chloe's bedside and be with her during therapy but we hope that we can take breaks when there is a need.

Chloe continues to do well. She and Olivia had a nice playdate Friday afternoon to start off our weekend together. My parents were able to pick up Olivia early from school and bring her to the hospital so that I could have some time with her. Olivia was so excited to see Chloe awake and alert. We opened up some playmats on the floor and Olivia read books to her sister, played with her toys, and showered her sister with kisses and hugs. Chloe enjoyed her sister's gentle touches and cooed lots while they played. It was wonderful!

Much love and thanks,

Michelle, Reth, Olivia and Chloe

PS

Our updated address at the hospital:

Chloe Atienza

PATIENT: Green Unit, Room 110

Blythedale Children's Hospital

95 Bradhurst Ave.

Valhalla, NY 10595

December 3 - Blythedale - Day 14

So Reth is back to work and I am here at Blythedale with Chloe.

It has not been the easiest start but we keep chipping away. The past week and a half, Reth has been here to observe and learn many different PT/OT and speech exercises, learn how to feed Chloe and administer her medicine and take care of her GT site. He has been amazing with her and I have watched him move around her new routine with such ease and confidence. He has seen Chloe make lots of baby steps with her teachers and therapists - reaching out a bit more for toys, rolling over slowly, organizing her mouth a bit more with different oral stimulation tools, and even sucking on her therapists finger. Thinking about all these things, they seem so little and trivial but these are actions that we didn't see or saw very little of over the past month and a half.

Chloe is a newborn again. She needs to be cradled and needs lots of head support. She needs to be taught everything. Slowly, slowly she is remembering different actions and movements and has become a bit easier to work with. She is easier to calm when she is moved through different positions and is able to tolerate more and more activities. She has been more alert during the day and restful at night which has made her evaluations and assessments much more successful. Chloe has now been approved for 3 different therapies of 30-45 minute intervals of PT, OT and speech. A feeding therapist will begin with her in the next week or so as well. She also has two sessions of school, one for two and a half hours in the morning and another hour and a half in the afternoon. It's quite a busy day for her!!

It is a very slow process rebuilding and retraining the brain. Each day we see glimpses of what is possible but understand that it will take time. It has been eye opening to think about how many signals the brain needs to send to the rest of the body in order to perform a task. Even just rolling Chloe to her side takes a lot of little pushes and adjustments of her head, her arm, her hip, her leg, her feet. Pat, pat, pat, rock, rock, rock, and a few minutes (not seconds) later she eventually calms. It is indeed easier to do this now than it was just a couple weeks ago but what used to be the simplest of tasks is now hard work for her.

As for me, well, I would be lying if I said things were fine, I would even be lying if I said things were okay. I (we) are hanging in there. It's a big adjustment and there is a lot to learn. Slowly (very slowly), I find people here that I can trust and can talk to about my frustrations, my questions, my goals but this too will take time. It's not easy being away from Reth and Olivia and being far from home but as we watch Chloe trying and pushing to accomplish so much in her jam packed day, we know that as hard as this is on all of us that this will give her the best chance to a brand new start at life.

Much love and thanks,

Michelle, Reth, Olivia and Chloe

November 30 - Blythedale - Day 11

Hi everyone! We wanted to begin sharing some pictures with you of Chloe so you can see how she has grown. Till now, we have only shared pictures of Chloe before she was sick with the exception of Halloween pics but we are ready to share with you how she is doing. This picture was taken on Thanksgiving Day. Unfortunately, by the time we took pictures, Chloe had fallen asleep. Olivia enjoyed her napping though since, as you can see, she took full advantage of being able to put stickers all over her outfit.

There is not much to update. The hospital staff has been off for the holiday weekend and we just resumed our sessions with Chloe's therapists this morning. As expected, Chloe's rehab will be slow with setbacks here and there. Currently, she is doing remarkably well - with each attempt Chloe makes to hold her head up on her own to slowly grasping objects within her reach give us more energy to an otherwise very long day. Every small advancement she makes is a true victory in our eyes. Today was her first full day of therapy - let me rephrase that, today was her first full day of therapy where she was awake! Chloe's sleep schedule is slowly returning to normal affording the therapists a larger window of opportunity to work with her.

Many of you have been inquiring about how to get in touch with us, come for a visit, or send something so we wanted to update our information.

It is always best to reach either of us on our cell phone or email. We try our best to get back to you but with Reth heading back to work and me being with Chloe in therapy and school, it has become more difficult to find quiet down time. It is so helpful to hear your voices and read your messages though so we promise to do our best in keeping in touch.

So many of you continue to send letters and gifts of support to our home. Reth will be home to receive them most nights but will only come to the hospital on the weekends. If you want to reach out to us at the hospital, the address is:

Chloe Atienza

PATIENT: Yellow Unit, Room 160

Blythedale Children's Hospital

95 Bradhurst Ave.

Valhalla, NY 10595

We know this hospital is far for many of you and we appreciate all of you who have offered to come by and help.

Thank you again for all your support.

Much love and thanks,

Michelle, Reth, Olivia and Chloe

November 27 - Blythedale - Day 8

A Thanksgiving to remember…

It was not easy waking up yesterday morning and not running down the stairs in my pajamas to my mom and brother’s cooking. Every year but one (when I was away my junior year) I have spent Thanksgiving at my parent’s house, watched the parade, yelled and screamed with my brothers, ate plate after plate after plate, and played Scrabble till the late hours of the night.

I did not wake to Olivia’s voice calling out for us to let us know she was ready to come out of bed, I did not wake up in the arms of my husband, I did not wake up to Chloe’s feet kicking around the crib like she did before she got sick. It was a different morning of beeping alarms outside our room door, a nurse coming in with syringes of seizure medicine, and an early routine of filling up Chloe’s Kangaroo bag for her milk and attaching her G-tube.

Through my sadness and my tears, though, I was thankful. I was thankful that all my family was safe. I thought about how far our little Chloe has come and how thankful we all are that she is such a fighter and has so much strength. I thought about Olivia and Reth waking up together in the hotel and enjoying some daddy time – running around and eating a big breakfast. I thought about my mom and dad happily packing up the car with all the food and treats that they would bring to us later in the day. All my parents ever want if for us to be together and they always seem to make that happen, no matter what. I thought about Steven and Jeannie waking up to Taylor and greeting her with her first Thanksgiving kisses. I thought about Patrick and Melanie sharing their first Thanksgiving as husband and wife. I thought about how in just a few hours Chloe and I would be joining them for a family feast downstairs in the cafeteria. They made it work. They made it amazingly special. I was overwhelmed by what they all did for us. (There may have even been some yelling back and forth and there was a late afternoon poker game among the boys which I happily watched. And no, Steven did not go 'all in' on the first hand!!) We managed to fill up about 5 tables in the cafeteria with my mom’s Filipino food and Steven’s turkey and fixings (even though I’m still a fan of canned cranberry sauce – sorry Steve). They all came together to make this a very special Thanksgiving and Chloe sat at the head of the table in her new stroller with her big brown eyes wide open. We also had some new friends join us. Our roommate from the hospital, Charlotte, and her family sat and shared a meal with us. They have been a family we have come to know and with whom we have shared a special friendship with over the past few weeks. We are thankful that they were able to share a meal with us as they have been a wonderful support to our family both in the hospital and here at the rehab center.

To Chloe and to Charlotte, you have been through so much and continue to fight. You amaze all of us everyday and we cannot wait to see the next triumphs and successes in your journeys. On this Thanksgiving, we thank you for your courage, your strength, for teaching us how precious life truly is and we thank you for being a part of our lives.

To all our family and friends, Happy Thanksgiving again. We are at a loss of words to express our gratitude. We are so very thankful and feel so blessed.

Love,

Michelle, Reth, Olivia and Chloe

November 25 - Blythedale - Day 6

We started off stronger than we expected as Chloe showed a wonderful alertness last Friday when she first met her therapists and teacher. Over the past few days, though, Chloe has shown a flip in her sleep schedule and has been awake most of the night and asleep during the day. Unfortunately, this makes her evaluations difficult to conduct and her therapists have not been able to work with her efficiently the past two days. We have spoken to her pediatrician and neurologist here and will try to adjust her medication times so that she is not so drowsy from the seizure medicine right before her day begins.

We continue to settle in as much as possible. Chloe is being fitted for a new chair/stroller that will help her sit straight and upright and work on strengthening her trunk and core muscles. Though therapies have been moving slowly, Chloe has shown us once again how strong she is. She continues to lift her head little by little and has been reaching out and loosely grabbing toys when she is sitting in a bouncy chair. Chloe is also able to tolerate more stretches and positioning. With help and coaxing, she is able to settle into sitting positions - straight up and slightly leaning slowly slowly forward for a stretch, lying on her belly even with her G-tube, lying on her side - even her right side which has been the weaker. We pray that once she is more awake and alert during the day, that her therapy sessions will show even more improvement and we will soon witness leaps and bounds.

This week has challenged Chloe and us. It has not been easy changing our life and we struggle everyday to find peace. As we prepare for tomorrow being Thanksgiving, we are hit hard with the fact that we are not home. But, we are so thankful for the many blessings we have been given - for the life we have seen saved, for the love of our family and friends, for the work of her wonderful doctors and fabulous nurses, for the strength we find in each other and in all of you to help us along. Again, saying thank you does not seem enough but please know that we would not be here without all your support.

Thank you everyone! Happy Thanksgiving!

Much love and thanks,

Michelle, Reth, Olivia and Chloe

November 23 - Blythedale - Day 4

Where to begin…

Still feels like this isn’t real, or rather it’s not supposed to be real. Maybe I haven’t quite reached that stage of acceptance but I still hope that I will wake soon from this nightmare and be at home with Reth and our girls snuggled up on the couch and enjoying life.

The reality is that I sit here late at night in our hotel room while Olivia sleeps and Reth watches over Chloe at Blythedale. Home seems so far and out of reach and, in all honestly, almost non-existent since I won’t be able to call a place home until I have my family all together. It’s just not the same, it feels empty.

We have set up camp here in Westchester over the past few days. After a weekend of going back and forth, my parents have been kind enough to set us up in a hotel nearby the hospital so that we can all be together as Chloe settles into her new environment. Reth has been fortunate enough to be given this week off work so that he can be part of Chloe’s initial assessments and help us through this transition. We have also pulled Olivia from school for the week so that she can see her sister and be with me as much as possible. The plan after this week will be for me to stay with Chloe during the week and have Reth and Olivia visit on the weekends. It will be extremely difficult for us to go a week without being together and we dread the moment already but it is the best we can do for our family and will find a way to bear it and make it work.

Blythedale has obviously been a difficult transition for us. New York Presbyterian Hospital-Cornell was an amazing place for Chloe and our family. The PICU team took care of each and every one of us and we had finally come to a point where we felt comfortable leaving Chloe for short periods of time. Though we know it will take time to adjust to our new settings, the past few days here have been a bit difficult. There was no one to greet and welcome us when I first walked in with Chloe, we ended up in an older wing we didn’t see on our tour, in a room that vibrated from the construction that is taking place, we had to fight for the right formula to feed her, no one knew her or me, and we felt alone.

After a few changes and few days to take everything in, we are in a better place than where we started. On Friday, we met Chloe’s therapists (physical, occupational, speech and feeding) and infant stimulation teachers. Chloe’s weekdays will include a morning and afternoon session of school and daily therapy sessions (unfortunately, there is no activity on the weekends). Throughout the day, Chloe is massaged, stimulated and worked. She is holding strong and doing well. Even just being here for a few days, we have seen Chloe moving around a bit more. She is able to tolerate lying on her side with much more ease, and we have laid her on her belly as well. We even saw the slightest lifts of her head as she is pushed to her limit with her teacher and therapists. They have done amazing things with her in just a few days and we notice slight differences in her body. It will be an exhausting long road but as we watch her with her teacher and therapists, we see and pray that we will witness her physical and mental strength slowly, but surely, improve.

Thank you for being there for us as we enter another phase. We appreciate all your emails and phone calls. Thank you for giving us this time to settle in. We know many of you have been anxiously waiting to hear from us and get an update, so we appreciate your patience as we find our way. We will continue to update the blog as much as we can and we thank you for your positive thoughts and prayers.

With love,

Michelle, Reth, Olivia and Chloe

Rehab- Day 1

Hi everyone!

We wanted to write a quick note to let everyone know that we are here at Blythedale settling into our new routine. We are absolutely scared and nervous but deep down know that this will be the best place for Chloe. Medically, she is very stable. However, 40 plus days in a hospital bed has caused much tone loss and as you know, the meningitis caused a series of complications that come with an assortment of residual effects. So we continue to climb and stumble till we reach our goals.

We are settling in, though it has not been an easy transition for us. We know that our goal here is rehabilitation, and from what we observed on Friday during our initial visits with the therapists, we were quite pleased.

We promise to keep updating you with our progress and hope that you will continue to follow and support Chloe. For now, we are so overwhelmed and really trying to find our footing here. Right now, it is difficult to write news daily as we still sift through our emotions of change and really try to remain open minded and positive about where we are right now, not just in terms of a place but in life in general. So, please be patient. Weekends here are uneventful as therapy only happens during the weekday.

We will have initial assessments over this coming week and see where Chloe is, and then create a plan for her. As the week slowly progresses, we will fill you in.

Be patient and check back in the next couple days. We are here, just trying to focus on making this new life routine work. Believe me, we have not forgotten any of you and know that you want to keep posted on Chloe and we will once we have settled a bit.

Until then...Many thanks for your continued support.

Lots of love,

Michelle, Rethier, Olivia, and Chloe

Discharge Day!

That's right, discharge day! We found out early this morning that Chloe would be discharged in the afternoon. Although Michelle and I knew she would most likely be discharged today, the news of her discharge took us by surprise. I'm not sure what exactly went through our minds at that moment - Excitement?? Fear? Yes, this is a positive step in the right direction - but I can't help but feel that over the past 42 days at Cornell that we have become institutionalized in some way. I am sure there is some syndrome that best describes ones dependency on an institution after being there for a long period of time. We are scared, very scared. Our rehab facility is totally new to us as we are to them. New doctors, nurses and rehab staff. At Cornell, EVERYONE knew Chloe. And of course, everyone adored her. We are hoping at Blythedale they will be just as receptive.

I would like to again say a very sincere and heartfelt thank you to the staff of the PICU at Cornell Hospital. If it was at all possible to make our stay there an enjoyable one - they did. We made friends from strangers and we shared laughter with them when all we wanted to do was cry. I'm almost positive that I was known as "crazy nurse dad" on the unit. So, thank you for being patient with me. Joking aside, I find it difficult to put into words how much their being there for Chloe and our family has meant to us. Their care and genuine kindness will never be forgotten. I am very happy and honored to call them, "friends." Please keep in touch.

I will be taking the next week off work to be with Chloe and Michelle at the rehab facility so that I can participate in her care and therapy. I am hoping it will ease my anxiety about not being there for the following weeks when I return to work. Chloe's recovery will be long, but we are prepared to give her every opportunity to be the best she can be. And if history is any indication on what her best is - she will be just fine. She's our superstar! We will not quit, we will not give up. And to quote Olivia, "Our House is Strong!"

Much love and our deepest thanks,

Rethier, Michelle, Olivia & Chloe

A Whirlwind - Day 41

It has been a very long stretch of days after being switched to the regular Pediatric Unit. It has taken more than a few days to adjust to a new environment, a new staff of nurses and doctors, a new routine. We found ourselves a bit alone and isolated to not have a nurse in the room with us and feeling a bit left behind as we left our PICU family, but what I did find is that it pushed us to be much more proactive in what we needed and what we wanted for Chloe.

As we posted earlier, this move to the floor unit lit a fire in us to get out and move forward. We put a plan into action on Monday to make sure orders were put in for final tests and set a family meeting time for today with our whole team of doctors who have worked so hard on Chloe's care throughout our stay. We had an exhausting whirlwind of tests these past couple days - Chloe has gone through 24 hours of EEG monitoring to check for any seizures, a MRI to look at the pressure in her brain and check for any infarcts or changes, a vision and hearing test, and a check on her blood levels. It has been an extremely emotional few days as we sat bedside and prepared for everything. Amidst all these tests, Chloe has still been vomiting and we continue to find a feeding plan that works with her G-Tube and keeps her comfortable. She has shown a bit of discomfort the past couple nights, crying and groaning, as we still try to figure things out.

Now the update...We had our family meeting with our team this afternoon and most, not all, results are back.

Chloe's video EEG over a 24 hour period showed NO sign of seizures. The brain activity in some areas are still not as active as they should be but show some improvement since the beginning of our hospital stay. Neurologists feel that the medicine regimen is working well and that she is stable neurologically.

The MRI from earlier today shows that Chloe's ventricles are the same as, if not slightly larger than, her last scan. Unfortunately, this is not the news we had hoped for but this is a residual effect of her meningitis and the brain loss/damage that Chloe has suffered. There is still no way to determine what the loss indicates but we are still confident that we can help Chloe relearn her skills and retrain her brain to function in as many successful ways as possible. We will not allow a test to get us down and determine her future. Rather, we leave it to Chloe, the strength of her feisty spirit, and the support and love of all our family and friends to find absolute success!

We are still awaiting results from her vision test, and her hearing test has been postponed until tomorrow morning so we will let you know.

Her G-Tube is functioning well and we are slowly working our way to a nice continuous feed that seems to agree with Chloe's little belly.

What does all this lead to??? Discharge!! I say this with slight hesitation (otherwise it would have been in capital letters and the first thing you read) only because we are still waiting for some paperwork to go through from our insurance company and medical forms to be filled out. We also need to make sure that her feedings go well tonight. If all goes well, late tomorrow afternoon or Friday we will begin the next part of our adventure...Rehab! We have decided to move onto Blythedale in Westchester for Chloe's rehabilitation. It is far from home and we will have to adjust to a different routine and lifestyle but we are confident that this facility will give Chloe the best results of success and will teach us how to give her the best care when we eventually go home. In this decision making, we are going to try as much as possible to still keep Olivia true to her routine of school and home but it will be difficult for her as she realizes that we are farther away and will see us a bit less often. Olivia, too, has shown such amazing strength throughout this nightmare and we know she will continue to be a wonderful, supportive big sister. She has been Chloe's biggest fan - singing to her every night over the phone, entertaining Chloe's nurses and doctors and, of course, keeping mommy and daddy very happy and giving us lots of hugs and kisses everyday - the best medicine and therapy ever!!

We will keep you posted as we anticipate our move over the next day or so. We ask that you continue to keep us in your prayers as we continue to move forward. All of you have been beyond supportive in your emails, phone calls, letters and visits. We need your support more than ever as we tackle the next steps in our journey. We expect some bumps and setbacks but will continue to push through so that we can get our baby back home.

Much love and thanks,

Michelle, Rethier, Olivia and Chloe

November 16 - 39 days

Our dash to the finishing line (at least to the exit of the hospital) continues…

Reth and I are very much determined to get Chloe out and into a rehab center in the next week. We have called for a family meeting between all the teams of doctors. With so many people working on her, we need to be really efficient at this point. Efficiency was not on everyone’s minds today as we prepped Chloe for a final MRI and were all set to go until the doctor realized they didn’t put the order early enough to stop feeding her. So, after all the paperwork, screaming to get another IV in her, stopping her feeds for the past four hours and getting everyone together, our MRI is now rescheduled for Wednesday. Now that we have a couple days until the test can happen, neurology came in to have her EEG monitor placed back on her head so that they can see what’s happening over the next 24 hours. There is no threatening reason for the monitor to be put on, only to use it as an update and make sure no other seizures are happening. This means, though, that our room has changed again so that we are in a bed that can video monitor Chloe – we now reside in room 218.

Chloe looks better and better though. The doctors felt she didn’t need to be on the heart and respiratory monitors anymore so no more wires all over her chest and belly. This made it very easy for me to hold her this morning. OT came in and positioned her on my lap facing outward and I wrapped my arms around her elbows and legs to cradle her close. She slept peacefully in my arms and we enjoyed every minute.

Her feedings have also been progressing with the G-Tube. She is tolerating a continuous feed of pedialyte mixed with formula (50-50 mix) and has not shown any signs of discomfort.

Slowly we inch along. With the entrance to rehab in sight, a fire has been lit to really move all the final tests along. Chloe has proved that she is strong and now we just need to get her moving!!

Much love and thanks,

Michelle, Rethier, Olivia and Chloe

November 15 - 38 days

Chloe was stepped down to the regular pediatric floor yesterday! Definitely a move in the right direction. Of course, after a month in the PICU we were quite comfortable with the staff and care we received on that unit. So now we deal with new staff who are not familiar with our story and struggle to trust them with the care of our daughter. We pray that our stay on the general pediatric floor will be short and her discharge to her rehab facility will be soon. We are crossing our fingers for a discharge by the end of the week.

Prior to her discharge, Chloe will need her eyes and ears checked to see if there has been any loss. In order for her to be discharged she has to be able to tolerate her feeds through her new G-tube. They have slowly been increasing her feeds and she has been tolerating it well. Tonight we start a mix of pedialyte with her formula and slowly move to an appropriate feeding schedule for her. We will also need to make sure that Chloe's seizure medicines are the right dose for her and she will most likely go through another MRI/CT scan at some point to check the pressure of her brain fluid.

We now prepare ourselves to climb the next mountain. The mountain on the road to recovery. Our patience and faith was put to the test this past month. I have a feeling the next couple months will be an even larger test on our family strength, faith and patience. Chloe's road to recovery will not be quick, but she has proven, time and time again that she is a fighter. I am sure there will be many more bumps and setbacks in the road ahead. Knowing this, we dig deep within ourselves and draw the energy needed for Chloe's rehab to be a success.

Thank you to everyone for your continued thoughts and prayers and please know that we could not have been as strong as we are without your prayers, love and support. And to all our visitors, we hope to see you soon. You can find us still in the Greenberg Pavilion but in 6 North, Room 216. As we move closer and closer to our hopeful discharge, we hope that we can enjoy our visits as much as possible, as we know that it will be more difficult for family and friends to travel to a rehab facility.

Much love and thanks,

Rethier, Michelle, Olivia & Chloe

9 months old today

Chloe continues to recover quietly today. She has been tired again but has had moments of wakefulness where we have been able to stare into her big beautiful brown eyes. 24 hours have passed since her surgery so the NG tube and bag they left to drain anything extra in her belly have now been removed.

We began to use her G-Tube today and so far she has been doing well. Nurses started to administer her medicine through the tube and Chloe has been given a slow drip of Pedialyte. Once she shows us that she is able to handle this liquid for 24 hours, we will then move on to her formula.

Chloe's face is stunning and clear of any tape or tubes for the first time since we've been here. The EEG monitor remains off her head so her hair is nicely done with a purple bow. And she is absolutely beautiful!! It was wonderful to walk into her room this morning and see my little bear's face all clean.

Today is also Chloe's 9 month birthday! It is hard to see this milestone in the hospital and I am extremely saddened that she is not at home, but at the same time I have to remember to celebrate. On this day, I celebrate her strength, her determination, her fire. She has overcome so much this past month and has fought through more obstacles than I have in my lifetime. Today, and always, Chloe is my hero for never giving up and showing me just how precious life is.

My amazing little girl, you're 9 months old today and we could not be more proud of all that you have accomplished.

Much love,

Michelle, Rethier, Olivia & Chloe

November 12 - 35 days

Chloe had a relatively quiet day recovering from her surgery late last night. She is kept comfortable with doses of morphine every 3 hours. They hope to start her G-tube feeds early tomorrow morning. The PICU was concerned because she had not peed since her surgery last night. Around noon they eventually had to insert a catheter to help her along. They were discussing inserting a foley catheter if she continued to have urinary retention. Then around 10pm - the flood gates opened!! She peed! Thank goodness for small miracles!

You start to think that you've been in one place too long when everyone from the valet attendant, janitor, the pizza delivery guy, nurses, physicians, EEG technicians, therapists and unit clerks know you. They either know you by name, by the car you drive, who you're visiting, or the fact they know it's your turn to stay overnight. That is our reality right now. We're not exactly sure if we should be happy or sad that everyone knows Chloe. Nurses, therapists, physicians, and residents who have cared for Chloe stop in even when they're not assigned to her and check on her status. We have seen Chloe's roommates admitted and discharged multiple times, and think to ourselves, "When will it be our turn?"

With each passing day the weight of all that has transpired slowly chips away at me. If it's difficult for me, I can only imagine how much more difficult it is for my wife. Michelle is with Chloe for the better part of the day and sees every test, blood draw and x-ray that Chloe undergoes. She is witness to every little cry and grimace and she can only hold her hand and say everything will be okay. I rely on her to be strong as she relies on me. It is difficult and we are tired but we do it because we are parents and our daughters rely on us.

Thank you everyone for your continued prayers.

Rethier, Michelle, Olivia & Chloe

November 11- 34 days

I want to thank all of you for being such an amazing support to us during all our ups and downs. We received so many notes, emails, letters, and phone calls especially after the blog last night. It is indeed a terrible situation that we are in and I do not share my inner most thoughts to scare people or to make you upset. We simply want to share with you what we go through as we sort through our feelings and confusion. It's been too long and Chloe has been through too much.

Admittedly, last night's blog is still hard for me to even read but something stuck with me as we pulled ourselves through the day. Weakness will make you stronger and more determined. When we fall and allow ourselves to cry or scream or go numb, you can either allow yourself to surrender and give up or pull through and be strong. As much as I cried last night and was unsure of myself being a strong mama to my girls, I found myself laughing, smiling and having fun with them both as I started my day. Olivia had some mommy and daddy together time (we both took her to school today) and I immediately smiled as soon as I saw Chloe kicking her left leg into a split position as soon as I walked into the hospital room. It was going to be a good day!

It's important to find these little moments and truly grab hold because the feeling that filled my heart when I looked at my children, made yesterday's tears and heartache go away...at least for a little while. Oh my sweet girls, they amaze us everyday!

And, speaking of amazing, Chloe's G-Tube surgery was a success! We did not go down to the OR until 8:30PM. We continuously got bumped on the schedule and were even asked to consider another day. Our family has been through enough in making this decision and Chloe had not been eating since midnight last night to prepare for surgery so we were determined to make this happen. Overall, the surgery went very well, no complications. Afterwards, Chloe was awake, but fussy, when we first saw her. They administered some pain medication, and her muscles soon loosened and she fell asleep. She will have a nasogastric tube for the next 24 hours to make sure her belly is clear and will have no feeds during this time as well. The doctor needs to be sure that the tract is forming and healing, and her belly is beginning to make sounds before starting her on Pedialyte and Formula.

It was a long and scary day. I debated our decision all day, up until the very last kiss in the OR. We know we made the right decision and can now focus on her therapies as a whole.

She is a strong girl and has proved this over and over again.

We thank you for your much needed support and prayers

Much love,

Michelle, Rethier, Olivia and Chloe

November 10 - 33 days

Our days and nights feel like they are getting longer and longer. The past couple days have been extremely emotional watching Chloe struggle and have several vomiting episodes. Every noise and movement last night caused me to stir and jump off the couch where we sleep bedside. There was nothing left in her belly to throw up so all the nurse and I would witness was a very painful gag followed by a very loud rumble of her belly.

It is so difficult to see your child in pain and suffering but to watch Chloe for the past 30 plus days at this point is beyond heartbreaking. We cry every day, every night. I scream every chance I am alone...even when I am not. Sometimes I don't know what else to do. I've given up asking 'why' because it only makes me more upset and angry. I wonder when I'll be able to hold her again without having to worry about all her wires, without worrying about her low tone. I wonder when I'll see her smile and hear her laugh. I wonder when Olivia will be able to dance and play and laugh with her sister again. It breaks my heart over and over remembering the last time we were all together and laughing running around frantically for the camera to catch every moment of our girls. It breaks my heart everyday to think of my Chloe and how she suffers. I try to find the strength to be brave for her but it has become harder and harder every day that we have been at the hospital. I can't give up, she's my baby and I feel lost without her but I tell you I have never felt so broken hearted than I have this past month.

I sob as I write this in the hope that my weakness tonight will make me want to wake up tomorrow and be stronger and more determined. After a long night and day of watching over Chloe and running to her side each time I saw her lips smack and heard her gag, Reth and I now prepare again for her G-Tube surgery which is scheduled to be at some point late tomorrow afternoon. The doctors are still unsure of the cause of her vomiting but after abdominal x-rays, ultrasounds and bloodwork, they feel that she is strong enough and it is safe to proceed with the surgery. We altered her feeds today so that they were slower in speed and over a longer amount of time so that her stomach did not become too full and upset. She seemed to do a bit better than the last two days so we move forward and hope that her surgery tomorrow will continue to help her.

We are scared. I don't think we are all that prepared but I know we will hold tight onto each other. We will hold Chloe's hand until we are asked by her anesthesiologist to kiss her belly one last time before they begin. I know I will cry and I will fall. But I pray, we pray, that this will help Chloe along.

God bless our little Chloe tomorrow as she goes for yet another surgery. We ask again for your thoughts and prayers.

Much love and thanks,

Michelle, Rethier, Olivia and Chloe

November 9 - 32 days

After preparing ourselves this past weekend for what would be Chloe's fourth surgery we were very upset to hear that the surgery would be postponed. Last night and early today Chloe had multiple vomiting episodes where she could not keep her nasogastric feeds down. Her surgical doctor, being cautious, decided to postpone surgery until they find what could be causing her to be so nauseous.

As you can imagine, we feel this is yet another step back for Chloe's road to discharge. Like previous posts, every time we feel like we are making some headway we get knocked down. It was exhausting enough for Michelle and I to accept and consent for this surgery. But after hearing the news of her surgery being put off to a later date - we feel defeated. Yes, this is another setback but we have learned that even when we think we have no more to give, we look at Chloe and find the strength to continue.

We ask that you continue with your thoughts and prayers to help Chloe push past this terrible time.

Much love and thanks,

Rethier, Michelle, Olivia & Chloe

November 8 - 31 days

A month has come and gone and Chloe continues to fight! She continues to climb mountains until her body, mind and soul find that right path to her ultimate recovery. We hold her hand and stay by her bedside day and night, and stay strong because we know that in those beautiful eyes, we see her fiery spirit and sense her everlasting strength.

It was a long night and day of decision making on our part. In the end, we decided to give consent to the gastrostomy tube (G-tube) surgery to be performed tomorrow afternoon. Last week, we refused to hear the suggestion of its possibility and dismissed the surgery team when they came to assess Chloe. We remained, and still remain, optimistic about her ability to relearn how to drink from the bottle. Chloe’s strength astounded us when we first saw those first few sucks and we were so excited when she independently took her first real tastes of milk, but she still needs help in getting the nutrition that she needs in order to be strong and keep fighting. Her doctor who we adore and trust told us “you are giving her a gift by doing this surgery.” In having a G-tube placed, Chloe will no longer have a tube that runs through her nose and into her belly, will no longer have tape across her beautiful face to hold it in place, will no longer run a risk of pulling the tube out and risk aspirating. Certainly with a G-Tube there are other risks and complications that are possible but we are allowing her a chance to move closer to her discharge and rehab, and we give her time to relearn this suck and swallow skill at her own pace. We have put a lot of pressure on us, and especially Chloe, in these last few days to overcome this obstacle. We are not giving up, we are not surrendering… we are fighting, we are surviving!!

We pray we have made the right decision and that Chloe will have a successful surgery. And afterwards, we will continue our work with her therapist to get her to eat independently. We are still very much confident that Chloe will relearn all her skills and pray that we will soon come upon the day when we can have the tube taken out.

We ask for your positive thoughts and prayers as always. We ask for your support as we begin our day preparing Chloe and ourselves for her fourth surgery. She is scheduled to be in surgery around noon and we will be sure to let you know how everything goes.

Much love and thanks,

Rethier, Michelle, Olivia and Chloe

November 7 - 1 month

Today was a relatively quiet day. Neurology had increased the dosage on one of Chloe's anti-seizure medications which would explain why Chloe slept most of the day. It is hard to believe that one month has passed us by. It still feels like yesterday that we were rushing to get Chloe to the hospital. Time heals all wounds - so the saying goes. But the memories and heartache from the passed month will be with us forever. Chloe has come a long way since being admitted, of course, being at her bedside daily, her recovery cannot be fast enough. We are often reminded how far she has progressed by those who do not see her everyday. When we step back and look - Chloe has made an amazing recovery, and we are so proud of her.

Michelle and I still have the difficult decision as to whether or not we should proceed with the feeding tube surgery or postpone it until the end of the week in hopes of Chloe learning again how to take the bottle.

We continue to ask for the strength from all our loved so that we make the right decision.

Much love,

Rethier, Michelle, Olivia & Chloe

November 6 - Day 29

Oh, how I feel that the days are getting longer and longer. Somehow, someway we find a way to push through our tiredness and crankiness but today was difficult for both me and Chloe. We were both very tired and fussy.

Chloe slept most of the day today recovering from her surgery. Surgery last night went well. Not that it gets easier but Reth and I move through the movements with a little more flow now that this is our third round of neurosurgery. So as our baby girl lay strong and brave, we treated ourselves to a nice delivered meal and enjoyed each other’s company. As we were finishing up, our neurosurgeon came by to tell us that all went well and there was actually nothing wrong with Chloe’s shunt – the valve was working and there was no blockage. Of course our hearts sank because that meant that no answers are clear. He went ahead with our plan, though, and revised the medium pressure valve to one that is programmable by a magnet and set it at a lower pressure. We hope that this will allow Chloe’s fluid to drain more efficiently and decrease the size of her ventricles. A CT scan will be done tomorrow to check its progress.

As far as seizures go, Chloe continues to have some short subclinical ones at random times with no external indications. The team will increase her medications tomorrow and hopefully find the right balance.

Therapy continues to go well. We take each day as a new day and praise Chloe for every little movement she makes. A little more stiff today during PT/OT, Chloe fussed a bit during her stretches but in the end was able to sit up a bit with our help and sat in her TumbleForm chair that is basically a soft reclining seat. Her speech and swallow therapy also continues but Chloe’s muscles are still weak. She was able to take 5 cc’s of formula today but the end of the week has come and we are faced with debate of whether or not to go ahead with the G –Tube surgery. The surgery will give her the nutrition she needs without a tube through her nose that can potentially be pulled out or cause her to aspirate, and will also allow us to move closer to a discharge date. It is very hard to think about another procedure but the time has come for us to make a decision. We pray that with our efforts this weekend Chloe’s sucking reflex will become stronger and stronger and we can avoid putting Chloe through this.

We ask for your prayers and positive thoughts to give Chloe the strength to keep working and improving over the weekend and to help us make the right decision for the next step.

Many thanks for your love and support,

Michelle, Rethier, Olivia and Chloe

November 5 - Day 28

I was awoken early this morning around 1:30am by the neurosurgery fellow saying that he had to take some samples and measure pressures from Chloe's internal shunt. This request came from the neurosurgeon based off yesterday's CT scan. The neurosurgeon felt that the size of her brain ventricles and her hydrocephalus had not come down in size. In fact, he felt that they might be a little larger. They are scheduling a shunt revision sometime late this afternoon in the operating room. Once again we are in the familiar position of bracing ourselves for yet another surgery on our baby girl.

Looking ahead, Michelle and I managed to tour two rehab facilities today and get back in time to write this blog and be with Chloe while she awaits surgery. We were very impressed with one of the rehab facilities, Blythedale in Westchester. The one big challenge is the distance but we'll address that mountain when we are ready.

On our drive back from Westchester, Michelle and I had time to talk about all that has happened in the past month. We never could have imagined a life like this for our family. Prior to Chloe's illness we would always tell each other that we are so blessed to have to beautiful and healthy children. And in a blink of an eye a month has passed us by with our darling baby girl in the hospital fighting and recovering from a terrible illness. We still ask ourselves, 'Is this a test?' A test on our faith? A test on our family strength? Or is this just a horrible, horrible nightmare from which we will soon awake? In either case, it has definitely taken its toll on our family. We are tired, beaten and exhausted. Our tempers are shorter and we react irrationally at times. All normal human reactions in the grand scheme of things. But at the end of the day we're one family - fighting for the best for both our girls. "Our house is strong, our family is strong" is what we now tell Olivia every night as one of her fears has been that 'the house is falling.' At only 3 years of age, Olivia is amazingly intuitive and aware of this nightmare that has rocked us.

And so we press on...we press on because we know that Chloe, with all that she has been through has not given up her fight. We often hear from friends and family that children are remarkably resilient. Chloe is the poster child for resilience.

Thanking you for your continued prayers,

Rethier, Michelle, Olivia & Chloe