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

November 4 - Day 27

Today was another long, but good day for us.

We started our morning with our speech therapist who is helping us reteach Chloe how to take a bottle. Chloe had done such a great job yesterday during therapy but other times during the day she just bit down on nipple. Well, once again, she amazed us. With the help of her therapist, Chloe took the sweetwater right away and we were soon trying a bottle of formula. At first, we were unsure but she indeed drank 10 cc’s of milk. Her sucking reflex is not yet strong but we are headed in a very positive direction. Yay Chloe!

Chloe is also doing well with her physical and occupational therapy. We have been working with therapists to help Chloe find her ‘midline.’ Your midline helps you to, in a way, organize your body so it’s been important for us to help guide Chloe’s hands to the center of her body or have her eyes focus to the middle. Both therapists have been teaching us interesting ways to help Chloe reacquaint herself with her body by placing her hands on her belly, chest, face, legs, etc. It almost feels like Chloe is a newborn again and she is figuring out what and where everything is and where her boundaries are.

We are also optimistic in that her neurologists were happy to report that there have been no seizures over the past 24 hours and that her CT scan from today showed no change since her surgery. No change is a good thing – there is no pressure in the brain and her ventricles have not shown any increase.

So with our days becoming busier and busier with the work and therapies Chloe requires, we are off to tour two rehabilitation centers tomorrow. We will visit St. Mary’s in Bayside, Queens and Blythedale in Valhalla, Westchester. We have heard wonderful things so we are hopeful to find a place to take our next step toward recovery. If anyone knows of either place, we would truly appreciate any information you can offer.

With much love and thanks,

Rethier, Michelle, Olivia and Chloe

November 3 - Day 26

In a dark moment, I find strength and light within my baby girl.

On my ride up the elevator today, I kept thinking to myself ‘Enough already, enough!’ In the past few weeks, I’ve heard many times that we are only given what we can handle and that somewhere we will find the strength. You are always strong for your children but I have faced too many moments in these past weeks where I have felt defeated and broken. My heart has ached, I have been unable to breathe, and I have gone numb. This morning I felt all those things beginning as I saw the faces of the neurology team. It seemed as though no one wanted to look at me, and their smiles from yesterday (which was a seizure free day and a great day of movement) were not there. So came the news that Chloe had been having small seizures again throughout the night. Again, on the day that we were supposed to take off her EEG electrodes and detach all the wires, we were saddened and worried to hear that these seizures, though small, continue to happen. I broke down and cried as the team explained the new regimen of medications to try out. I was assured that these small strokes do not really affect her, and that only if they are longer episodes do they start affecting the amount of oxygen that reaches the brain. But still, the number of seizures (8 last night) is still scary and higher than what we’ve seen in the past.

Feeling defeated, the nurse watched as I lay my head down on Chloe’s bed and she asked if I wanted to hold her. I was so upset, I almost said no. Chloe is usually so comfortable and sleeps in my arms when I hold her close, so I agreed. Holding her in my arms, my tears ran down onto her face and neck and it broke my heart to look at her sweet face as she slept. I whispered to her to keep her strong and to give me strength.

And then came the light…

Chloe woke up an hour later and opened her big brown eyes and we sat rocking for a while. I knew that speech and swallow therapy would soon begin so I placed her back in the bed and tried to gear up for another one of our battles. Our speech therapist came in and got everything ready. Chloe was alert as can be and we were able to wake her mouth muscles fairly easily today (yesterday she slept through everything). Within two tries of the nipple dipped in sweet water, I saw my Chloe start moving her mouth, cheeks and tongue simultaneously. She sucked on the bottle!!! Then, she did it again and again!! There was no food in the bottle – that will be our mountain tomorrow – but her muscles were moving and I could not have felt more proud. I jumped. I screamed. I smiled. I told Chloe “You’re the strongest baby girl I know!!”

Much love,

Michelle, Rethier, Olivia and Chloe

November 1 - Day 24

Back to day one of no seizures. The doctors have loaded Chloe again with more anti-seizure medicine so she has been asleep for most of the day. When she is awake, though, her eyes are big and she enjoys listening to her lullabies or having us read her a story. Chloe continues to do well with her feeding through her tube. She gets fed for an hour, then waits for three hours to get her back to a normal feeding schedule. Unfortunately, she did vomit in the middle of the night after one of her feeds. We are not sure why - she did not cough or gag - but we are watching her carefully. We also keep giving her a taste of milk or sweet water on her bottle nipple and are still hopeful that we can reteach her how to suck. Again, we keep praying that we can avoid another surgery and get our baby Chloe back on track. We know she can do it!

I was able to get a mini break and spend some extra time with Olivia this weekend since we went out to Long Island for Halloween. She had a nice time screaming 'Trick or Treat' and getting candy. And, she had a great time playing with the grandparents, uncles, aunts and cousin. It was nice to give Olivia a break and let her run around and be loud. There were moments, though, where she'd stop to think about Chloe and let me know that she missed her sister. I think this breaks my heart the most. We promised that she will see her tomorrow afterschool.

Continuing to hope and pray...

Many thanks,

Michelle, Rethier, Olivia and Chloe