Chloe - three years later. Special day - October 8, 2012

Sisters laughing on Chloe's special day - October 8, 2012

Today we celebrate Chloe and her fight over the past three years.  She is a big girl these days and yet still such a baby.  She has overcome so much but still has so many obstacles to tackle.  She has shown such enormous strength, yet her body is still so weak.  Her spirit and her fight, though, have always shined through. 

It is still so difficult to recount the events of what happened when Chloe first got sick or what we have gone through over this time.  There are still moments of anger, resentment, frustration, confusion, and defeat.  Many of these moments are still filled with pain and sadness.  It is still painful to look at pictures of Chloe before she got sick and remember those moments.  Your heart just aches and it becomes too much to bear still.  We still ask the same question over and over… ‘Why?’ There is never an answer. 

Olivia has been asking about her sister more these past few months.  She asks about what happened and tries to make more sense of what it means when your brain is hurt.  She asks for more explicit details on what it meant for Chloe when she got sick.  Ultimately, though, she asks when Chloe is coming home or she simply and very quietly says, “I miss my sister.”  An unbearable pain in my heart always seems to swell when I hear her ask for Chloe and all I can do is take a deep breath and say that I miss her too.  Olivia is lost without her best friend.  Any time she has the opportunity to make a wish as she blows out a candle, throws a penny into a fountain, or looks up at the first star in the sky, she will always wish for her sister to come home or for her family to be and live together forever.  It is so sweet and innocent when she does this and makes me appreciate their bond so much more. 

We miss Chloe everyday.  The pain we felt three years ago has never gone away but we try we move forward each day a little bit more.  We look forward to seeing Chloe grow and face new challenges everyday.  There still has not been much progress in terms of her development of physical strength but she has shown us time and time again how much strength is still alive inside her.  Her affect has calmed a bit over the past few months and she does not cry out as often.  She is still heavily medicated for her seizure disorder but we see fewer clusters.  And, best of all, when we visit her and hold her close she will laugh and smile.  It does not happen each time but when it does, it fills our hearts with such joy.  She knows she is loved, always has and always will be.  She knows when she is surrounded by those who love and support her every step of her hard journey.  She has not forgotten who we are nor will we ever let her.  She is truly amazing!

These past 6 or 7 months have been a huge adjustment for our family.  We juggle so much every week and weekend to make sure we create a home life both here and at Sunshine.  One thing I’ve learned from Chloe, though, is that you can never give up.  She has fought her way through life and continues to do so everyday and I must follow her example.  As hard as it is, Reth and I make it work so that we we try everyday to enjoy our marriage, enjoy our children, and enjoy our dreams.  It is not easy, it never has been – there are always tears, there are always arguments, there are always hardships that we endure.  Chloe has taught us so much about love, patience and strength.  She inspires us everyday to do more, to be better, to be more loving, and to be more kind.  I miss having her next to me everyday, I miss seeing Olivia run to her sister after school to shower her with kisses, I miss watching Reth dancing with his baby girl before bedtime and I know I will be crying for her the day her baby brother comes. 

She is an amazing girl who is very much loved in every possible way and for that we celebrate her today and always.  Thank you Chloe for all that you have given daddy, Olivia and me.  You are an incredible daughter and are such a gift to daddy and me.  Olivia adores you and will protect you always.  You will always be her best friend.  And, we can’t wait for you to be a big sister.  You will teach your brother how to be sweet yet strong, stubborn yet loving and all from being just the way you are. 

We love you Chloe!  Even though you are sometimes so far away, you are always in our hearts. 

October 7, 2012

When will it ever end or when will enough ever be enough?!  We try to make sense of all that she has suffered and all that she continues to endure and we feel like no one ever hears our plea to make it stop, to let her enjoy what life she has, to allow us to move forward and feel happy.  It seems whatever forces working against her and our family only seem to seize for brief moments of time until another wave comes and beats us down.  She proves her strength, we pick up the pieces and regain strength to only have another blow knock us down.  Yes, she is better but it depletes us each time there is a setback, and there have been many. 

We just recently found out that Chloe’s immune system is somewhat deficient and we are working with an immunologist to find out how to boost the antibodies that her body lacks.  While in Cornell early September, it was advised by her team that we run further bloodwork to investigate the reason why Chloe has now had two serious blood infections.  It turns out that she has very little to no antibodies for three viruses that each child is vaccinated – Dtap, HIB and meningitis.  Upon these findings, we immediately re-administered her vaccinations and hope that this will jump start her system and start to produce the antibodies she desperately needs.  We are unsure if she ever produced these antibodies or if this was the reason why she was infected with bacterial meningitis.  Babies are protected for the first 5 or 6 months from the antibodies received through the placenta via the mother.  After this period, it is up to the individual’s body to produce its own protection.  In Chloe’s case, we are unsure her body ever provided her the protection she needed.

Finding out this news was helpful in giving us some answers but was obviously devastating at the same time.  As a parent, you do everything you can to protect your child – you follow your instincts, you read books, you follow doctor recommendations.  We vaccinated her, we brought her to well baby visits, we read and researched (too) many baby books and still we could not protect her completely.  Part of my heart ached knowing that I only nursed Chloe for a month and I felt that immediate sense of guilt rushing back.  There were circumstances that prevented me from nursing longer but if I had, would she have been more protected?  Guilt is the worse thing any parent can have in situations of having a sick child so this made me ill. 

It is still hard to completely accept that fact that there was nothing we could have done to foresee any of Chloe’s suffering.  This is why it is so hard when people, even ones closest to us, continue to say things like – ‘why did this happen, why didn’t you bring her to the doctor, didn’t you see it coming?’  I know there are people out there who think, ‘how could they not have known? or how could they not have done more? or why did it take it so long for them to see? or why don’t these parents fight more, pray more, do more, work harder?’ I see some people look at me with their pity and it makes my blood boil.  We would do ANYTHING for our girls and the new baby. We have suffered and sacrificed so much than we could ever explain to others.  Many of you support us and hear us when we share our cries and we are grateful for those who understand and sympathize, not pity.  You will never know the value of those moments of sympathy and empathy you genuinely share with us and that’s what makes us fight even harder.

Tomorrow we will celebrate Chloe’s three year mark of surviving her meningitis.  We had a quiet and peaceful weekend planned so that Chloe would come home and we could enjoy some real family time at home.  Unfortunately, we once again had a delay in our plan.  I sobbed yesterday as I ran out of Chloe’s room in Sunshine and fell into a chair, screaming one word, “Enough!”  Reth, Olivia and I had driven to Ossining with such high hopes to bring Chloe home.  There haven’t been many visits home this summer or even for Olivia’s bday because Chloe was sick or was exposed to and potentially carried germs of other viruses from the hospital children.  This would have been her first visit home in a long time and we were ecstatic, especially Olivia.  As we packed her bags, we found out that she had been started on another antibiotic this past Thursday that we had not yet been told about.  Apparently, one of her caregivers had woken up ill, and after an ER visit received a positive result for strep.  With Chloe’s immune system already compromised, she was immediately put on an antibiotic prophylactically.  As we prepared to leave, a nurse urgently came into her room telling me to put on a gown and mask and escort Olivia away from her sister as the final results of a throat culture came back positive for Group A Strep. 

Pushing my way past the nurses, I left the room with devastation.  Explicit directions were given that extra precautions needed to be taken around Chloe until we figured out how to improve her immune system, so why would they let someone who works with 20+ children in the hospital be in direct contact with her?  We don’t want Chloe to live in a bubble and be on contact isolation forever but until we have more answers, people who feel even the slightest compromise in their own health should not be taking care of her and spreading their germs.  Almost 8 months pregnant and having Olivia at risk was not an option and we decided to let her finish 48 hours of antibiotics before trying to take her home so we left with tears, frustration and defeat. 

What will it take for us to have some sort of normalcy?  Is it so wrong that we want her to be as healthy as she can be at this point?  Hasn’t she been put through enough? Is it selfish that I want my family to move forward and be able to enjoy life? When… when will I ever feel that our life is somewhat back on track? After Chloe got sick, we knew our life would never return to the way that it was and we expected a long road and have dealt with those ups and downs but why can’t we also have time to enjoy?  I don’t mean to make it sound like everything has been so bad but times have been difficult.  There’s no sense in complaining about it when people ask so we sugarcoat and work it out but of course, there are days and months that are just a mess!! 

In reality, many of our dreams have been put on hold – our careers, our dream home, our adventures.  It’s not easy realizing that your life somewhat stopped when a devastating experience happened, but ours did.  Like I said, we’ve picked up pieces and regained strength time and time again but the effects are forever in our hearts and impact our everyday life, along with our hopes and dreams.  Everything and everyone else moved forward after October 2009 but we have, in many ways, felt stuck.  Even with the upcoming excitement of a new baby, a new life and love coming into our lives, it is still difficult.  Making room for baby#3 brings a sense of moving forward and a great feeling of love and strength but it is scary and emotional.  Creating a place where Chloe used to sleep, emptying her drawers to make room for her brother’s things, unpacking her old stroller where she last sat and had her last smiling picture three days before she fell ill, the toys that she never relearned to use, the books she never reached out for again, the seat where she would playfully beg for more and more food, the swing where she last sat before rushing her to the ER three years ago and where she last smiled. Of course there are new things we bought for the baby and we will make new memories, happy ones for sure, but we can never forget or push aside what has happened.

There will always be a place in our apartment for Chloe to come home.  She will always be there and with us regardless of the fact that she sleeps and is cared for in another home.  She is the reason why we know how to love so much, and she taught me to be the mother that I have become.  She is the one who inspires us and gives us strength to move forward everyday.  She is why we have learned to fight so hard, to advocate and use our voices.  She is never far from our hearts, our minds, our beings.

Tonight, Chloe and Olivia will have their long awaited sleepover and it will be joyous.  Tomorrow we will have our family day and enjoy.  We will not think about her sufferings but celebrate her fight.  It took us awhile to get her out today but Reth just carried her to the car as she winced as the cool autumn air touched her face and smiled as we pulled away from her nursing home.  I finish this blog as we drive home with her in her car seat, kicking the back of my chair, happily sucking on her finger and sitting next to her sister.  The way it should be…

Much love,

Michelle, Rethier, Olivia and Chloe

An update and a trip to the pediatric unit...

Smiling in July

Sisters in August

Olivia's Bday - September

This blog has been a long time coming.  We have wanted to share with you how things were going since Chloe’s move to Sunshine.  It has been a wonderful place for Chloe.  She has two roommates around her age who are pleasant and friendly and the staff treats her like the princess she is.  She is dressed nicely everyday and participates in activities with her recreational therapists as well as her rehab team, and she is starting preschool this Fall in the small school that they have on hospital grounds.   What is great for us is that it is such a small facility that we have come to know many of the people who surround Chloe and we have been very happy overall.  They make such an effort to keep us updated on the activities they do and hang up her assisted art work around her room.  Sunshine also has this great pond and fountain that our family loves to walk, run and scooter around.  Olivia enjoys running around the adaptive playground playing tag with Chloe in her wheelchair (guess who always seems to win) and likes to race around the pond circle as if it were a track.  Chloe loves to be outside so it’s a picture perfect setting.  We only wish we were closer. 

We are still fighting to get her into St. Mary’s in Bayside but the waitlist continues and there is no bed in sight.  It is very difficult and frustrating for us as we miss her everyday and those feelings of heartache never seem to fade away.  Our little girl is growing and doing amazing things and we feel like we miss those little moments but are so happy that she has been thriving.  Seeing the care that she receives 24 hours a day and the rehab that they offer lets us know that we have made the best decision for her.  Her newest tricks include rolling from back to belly to back and they have been able to use her standing system more often and set her up in different types of seating systems to help her regain some control of her head and trunk.  She is also smiling for us a little more when we come to visit.  She absolutely recognizes us and it’s only seconds until everything falls back into place when we hold her.  Back in May this year, we decided to go ahead with one more surgery to help Chloe.  Since falling ill, she had developed strabismus in both eyes (lazy eyes).  Throughout the day, we consistently noticed that Chloe brings her eyes together on her own but her muscles have weakened over these years and you can see her eyes wander to the side before her brain tells her to bring them center again.  Because she herself is trying to correct it every time, we felt another surgery would be appropriate.  It has been a success so far and we have noticed great improvement in how she can focus on people and objects and enjoy her environment a bit more.  There will be more surgeries for her eyes over her lifetime to keep her muscles tight but we are happy to see her big, brown eyes together as she smiles and even giggles with us.

            

        At home, it is still difficult to deal with our living situation.  It will always be a transition and always seems like a juggling act.  We have tried to focus on finding a sense of stability at home for our own sake and for sweet Olivia.  We were able to take Olivia on vacation with my parents and give her some much needed family time and have really tried to make time for each other as a couple.  Still, day to day is hard as I feel stressed between driving the distance to see Chloe and rushing home to be with Olivia.  Reth, as well, is torn every night as he leaves his long day of work – faced with the decision to come straight home for dinner or drive up to tuck Chloe into bed.  It has been an adjustment and a struggle as we still grapple with our guilt and insecurities but we still stay true to our decision and work through it the best we can.  There is just such a quiet and emptiness in our home that we can’t seem to fill.  Sometimes the stillness is just so thick, it is hard to breathe.  Even for Olivia, who always points out that it is too quiet in our house and begs for someone to play with.  She misses her best friend terribly but is starting to understand a little more that her sister is a special person with different needs that mommy and daddy cannot meet alone.  But we take it day by day and push through as Chloe has taught us to do since the very beginning.  I always seem to find myself saying, ‘If she can be strong from 8 months of age till now, then I can push harder and be stronger as well.’  Still, though, there are many moments of weakness and feeling beaten when we just miss her so much and can’t bear the pain.  We try to see her at least once during the week and my parents continue to be so generous in helping us on the weekends so that we are able to stay closer to Chloe's hospital in Ossining rather than driving back and forth.  This is another plea to anyone out there who has any pull or contact with St. Mary’s of Bayside, please help us to get her a bed so we can be closer and be even more of a support to her.

           

            So now, the downside of Chloe's health… Last Monday, we were admitted into New York Presbyterian – Weill Cornell pediatric unit for a blood infection that required heavy doses of antibiotics through an IV.  Originally, we were scheduled to come in for a routine overnight visit EEG to check on her seizure activity but we were called early Monday morning to alert us that she would be coming in on an ambulance in the ER.  She came in groggy but was soon cooing and kicking around so we thought she was fine but after 9 hours in the ER, many blood tests, a shunt tap, and a starting round of two antibiotics through IV, it was confirmed that she had an infection in her blood but it’s type was unknown.  Chloe’s white blood cell count was high and increased overnight so we knew something was brewing.  It was Group A strep which made its way into her bloodstream.  Unfortunately, since it was in the blood we were set to stay for at least 5 days of IV antibiotics.  As her white blood cell count improved, we were hopeful.  Friday afternoon, however, I noticed some drainage coming from her left ear and another infection was soon confirmed.  A ruptured tympanic membrane that is essentially an ear infection was now diagnosed.  Doctors are still working to find the right antibiotic to work on both the blood and ear infection together so that Chloe will not have to be on so many different medications.  The real worry is that the left ear is also where her cochlear was implanted so there needs to be a more aggressive approach to her treatment.

            For the most part, she is comfortable.  Cornell staff has always been a blessing in our lives.  Everyone knows Chloe and she is getting the attention that she deserves.  They take great care of her medical needs and keep her happy.  They even decorated her crib with colorful art hanging above her as they know Chloe is not able to make use of the typical crib toys.  Thank you to the kind person who left that for her.  It was a nice treat for us to see after taking the night off to be home for Olivia’s bday celebration.  We know Chloe is in good hands.

            As for us, like I said, we take things day by day.  This trip was obviously not easy for us as we did not see anything like this coming.  What we thought would be an overnight routine visit has turned into a long stay with a still undetermined departure.  As many of you already know, we are expecting baby #3.  It is more difficult for me to be here with Chloe as I am unable to pick her up and help as I normally would.  Chloe has also been on isolation so I’ve been trying to be more careful.  Reth has taken every overnight shift since I cannot stay on the hospital couch and has been running back and forth checking on me and Olivia.  The timing was also tricky as Olivia’s 6^th bday wish was to have Chloe come home for a sleepover and be there for her party but being the best sister she can be, we compromised on having a special cupcake with extra icing that she could feed to Chloe (just a taste) during a brief visit over the weekend. 

           

            Thank you everyone for your kind emails and messages, for your support and for making Olivia’s day special in the middle of this craziness.

Much love,

Michelle, Reth, Olivia, Chloe and Baby Atienza

Moving forward...

Life has a way of pushing us past wants and hopes and what we're left with is the harsh truth of reality. This is a blog update that is extremely difficult for me to write. It scares me to write out these truths because then it becomes more real and though it should not matter, it scares me what people will think or say about the decisions that we have made and have been moving towards these past few months.

Last Monday, we admitted Chloe to a long term facility called Sunshine Children’s Home and Rehab Center in Ossining, NY.

For almost two and a half years, we have done everything imaginable for Chloe to help her heal, to give her brain and body a time to rest and rebuild. We have remained bedside and held her hand through the most difficult and unimaginable situations for a baby. Her little body has been through so much and every morning she wakes up to yet another fight. She has made some progress since the beginning and in my mind she’s the strongest little girl I know and still amazes me everyday. But, the medications continue to change and increase, the seizures consistently come daily, the nights become long as she cries out loudly and lies awake, and her muscles are more difficult to move as she grows bigger and longer. Chloe still can not sit up but she can roll her self from side to side but not fully on to her belly. She still has never reached her arms out to ask for us or give a hug nor does she squeeze back when we hold her tight but she will, at times, gently wrap her little fingers around ours. Chloe is deaf but has learned to somewhat humor me in wearing a hearing aid before brushing her ear on something to knock it off. She does not speak but can bat her eyes at me to tell me she is there or far away in the distance. Sometimes, not much, she will coo and give a tiny smile. I like to think that it is on purpose but, in truth, I don’t know half the time. Most of the time, I’m not sure she knows what is happening to her nor does she understand her own cries.

She is still just a baby. I feel so helpless everyday and it breaks my heart to not know how to make it all go away. I think back over these past 2.5 years and it feels like a lifetime of heartache has passed. She’s gone through so much – so much brain injury, surgeries, constant testing and blood draws, so many evaluations, the list goes on… The first year she came home, it was survival. Reth and I took everything on. We learned how to do everything. I learned how to observe all her behaviors and search for meaning in her cries and eye movement. I painstakingly sat through google searches and state official meetings to gain access into any service or system that would help provide therapy, nursing, accessibility. Numerous doctor appointments filled our week and when we were home a team of therapists or school visits would fill our time. Our lives were turned upside down but we pulled through. But when that first year mark passed, it felt like more of a loss because we hadn’t moved very far in our journey towards recovery. Chloe was still not in a good state, her seizures worsened, more medicine came along, we still had not been granted Medicaid, we still did not have nursing, we still fought for more therapy and fought harder to find good people to provide therapy, we still searched for answers and consistently fell short.

Year two of Chloe’s recovery we were hit with a surprising amount of truths and personal lows in our journey with her and within ourselves. I remember thinking the day after her one year mark, “What the hell am I supposed to do now?” I don’t know what I expected after one year but I did not expect to be drowning in my fears and realities of having such an extreme special needs child. It was so much on her and our family and then another long hospitalization came as her seizures became so fierce and violent as they recorded well into 80+/day. Soon Chloe’s illness really began to hurt. It was never easy on us as a family, as a mother, as a father, or as a sister. But the pain became so unbearable sometimes. Like we’ve said in past posts, the anger was overwhelming, the questioning of our parenting was crushing, there was tremendous guilt, a loss of faith, there was a lot of frustration that turned into fighting with each other or with anyone involved in our case. Nothing was ever good enough and we could not find any answers or any peace in our lives. We suffered as parents. Olivia suffered watching her little sister and her parents struggle. They say children grow up fast in these situations. As much as we tried to keep her innocence, Olivia has witnessed too much and has felt too much to be a ‘normal’ child. Though she is amazing and will continue to do such special things in her future, her childhood innocence was left behind along the way. She’s lost her best friend. She cries at night that she is alone and has no one to play with. It still strikes me how close and protective she has been of her sister through everything. Olivia and Chloe are an amazing and inspiring pair.

The truth slowly sank in over this past year. Chloe’s cognitive state has been consistently evaluated to show she is at a 0-1 month old level. Physically she performs at closer to a 2 month level. We had hoped so much to improve her abilities and will continue to do so but these levels have not changed. There was a time that her physical state was slightly better but as she has grown, her weight and height have made it more difficult for her to move her muscles against gravity. Over the past 8 months or so, we have spoken to our very devoted team of doctors, specialists, and therapists about Chloe’s quality of life. It was a turning point for us to hear others say that we have followed through on all attempts to help Chloe recover. It was not easy for us to ask for or accept a prognosis on Chloe but we needed to hear it out loud. She suffered extreme neurological damage which has affected all her functions and though we had all hoped for better recovery, it was time to think about making her comfortable and stop trying to fix things. At that point, we knew our expectations shifted and the baby girl we once knew and hoped she would be would not. Though defeated, we knew that it was best to concentrate more on relieving her seizures and helping her sleep through the night. So what if she doesn’t walk or stand up, so what if she needs to be fed through a tube for the rest of her life, so what! She is who she is and she has fought to stay alive and pull through so if at this point in her life I can simply make her comfortable and give her the some quality of life, then to hell with all the developmental milestones. I just wanted her to feel safe and secure and, most of all, comfortable. No more brain surgeries, no more making her scream and cry through physical therapy to make her stand and make her body do things that hurt her (but were good for her), no more poking her head to keep on the cochlear implant. There were other things I could work on that would not make her hate life.

We began our official search for a long term place back in November and began to put our name on waitlists for a bed. It took us a long time to come to terms with this step and believe me when I tell you, this was a very painful and difficult decision to make. This was not easy in any way, nor does this decision make our life easier. We have cared for Chloe everyday, everyday we have stayed along side her. No parent wants to be in this position to make a decision like this. It rips our heart apart and sometimes we can’t breathe and it will continue to hurt for a long time. But, it is what she needs, it is what our family needs. We all need to heal right now – Chloe, Reth, Olivia, me. As Chloe continues to get better and worse and go through this roller coaster, it is clear that I need more help monitoring her and keeping her safe. I have become very good at documenting her every behavior, following her everyday, loving her every second but at some cost. I left my career that I loved, I feel that I’ve lost out on such precious toddler years of Olivia that I can’t get back, I’ve taken many hits to my self esteem and self worth as a person, as a mother, as a wife. After everything, I would not change a thing. I would never take back any of these days I have spent with Chloe but the one lesson I have come to accept is that I am not her doctor, I am not her therapist, I am not her social worker. I am her mother. There was a time that I lost sight of that simple fact. It has taken all my strength to accept that I need more help in caring for her. I need to be just her mother. No mother (or father) can put into words how much they love their children, but I do love my girls more than I can ever convey to you. This decision hurts more than you know but Chloe will be safe and taken care of at this place and can grow into an environment that will support her and her needs.

I promise to her that I will be there and always be her mama, and continue to be her best advocate. She will never be far from us. We will visit her often and after a short while, she will be allowed overnight visits with us up to 8 times a month so we can take her home for weekends, vacation, or special events. Olivia has already met most of the staff and has taken her place as Chloe’s best helper in therapy sessions. All we can do is try our best to be there for each other and our family and we hope that you will continue to support us.

We understand that this is also very difficult for you to understand and accept. Some may agree and think this is best and even wonder how it took this long, but some may disagree. However you feel, we hope that you will respect our decision at this time. If you want to know more or have specific questions, we encourage you to reach out to us. We are still very much hurting and feeling our way through this transition. Nothing is permanent but for now we feel that this is the best support we can give to Chloe.

We are still a strong family. We are a different family. We will always love and support each other.

Much love,

Michelle, Reth, Olivia and Chloe