Halloween - 23 days

Chloe's first Halloween! Not what we expected with being in the hospital, but very nice nonetheless. She and her sister Olivia were the two cutest pirates! We will post pics as soon as we download them from our camera. Olivia enjoyed her Halloween on Long Island at her grandparents house with Michelle. I was told that she claimed quite the booty of candy!

So continues our emotional roller coaster. This morning we were told by Chloe's attending physician that most likely the EEG monitor that Chloe wears would be discontinued because she has not had any seizures in almost 48 hours, only to be told later in the afternoon by her neurologist that she had about two seizures an hour from 9am - 4pm. It feels like every time we get up, we get knocked down again. We can only imagine what Chloe is going through and the incredible strength it must take to keep fighting. We also continue to work with Chloe's ability to take a bottle. She has the ability to swallow but does not remember how to suck from the bottle. The team is willing to give her to the end of next week to relearn this ability or at least show much improvement. We were told that if she is unable to take the bottle we should consider the alternative of a feeding tube being placed in her stomach. Of course, we want to avoid another surgery, but with every day that passes in the PICU, her rehabilitation is delayed. Until that day comes when we will be faced with more difficult decisions, we will continue to work with the speech therapist in hopes that Chloe will regain her ability to feed. Michelle and I maintain our bedside vigilance and will do so until we bring our baby home.

Olivia continues to visit Chloe daily and looks forward to each and every visit. We would be totally naive in saying that Olivia is not affected by what has transpired in the last three weeks. Michelle and I have noticed changes in her behavior and yes, it is to be expected with all that has happened - but we do have concerns and will be watching her closely. We struggle to keep Olivia's schedule as routine as possible - going to school and weekends are somewhat easy, it is the home environment where we find the most difficulty. Michelle and I have not been home together to have dinner, or put Olivia to bed in the past three weeks. Saying goodnight to Olivia usually consists of one of us holding the phone to her ear to say goodnight to whomever is staying at the hospital that night. The one constant we do have in Olivia's schedule is her grandparents. Michelle's parents have been absolutely wonderful in helping us with Olivia. They routinely stay overnight to help put Olivia to sleep, take her to school in the morning and pick her up in the afternoon. We are very grateful for all the support and love they provide.

In one of my previous posts, I had mentioned the amazing people who work in the hospital but I also want to add that we have met and befriended some amazing families. They too, stand vigil over their loved one. In three weeks we have shared our highs and lows with them. We have seen their tears of sadness as well as their tears of joy. To those families, we pray that you continue to have the strength to watch over and care for your beloved. And we thank you from one parent to another for listening and offering your gentle nods of support.

Much love and thanks,

Rethier, Michelle, Olivia & Chloe

October 30 - 22 days

An uneventful day is a good day! Each day, Chloe looks more and more like herself. Those of you who have been looking at Chloe's pictures, today's photo was taken the Sunday before we were admitted when we took the girls to Central Park Zoo for a special family outing.

Chloe seems to be reacting well to the new mixture of anti-seizure medicine and has been seizure free since yesterday morning. She is also fever free for 3 days now!! Her movements have calmed down a bit and seem to be a bit more controlled. Before, Chloe would move her arm and leg (mostly her left side) continuously and it seemed a bit involuntary. The neurologists told us that it sometimes happens with the brain damage that has occurred. Over the past two days, though, we have seen movements on both sides to be much more purposeful. We continue with her physical and occupational therapy to make sure that her muscles are being exercised and to reorient Chloe to parts of her body. We have also begun our speech and swallow therapy. Unfortunately, our chunky monkey who loved to eat and drink has some trouble with her sucking reflex so we are working together to strengthen her muscles again and hope that she will not need a feeding tube in the end.

We pray that Chloe will continue to progress and we will begin touring inpatient rehabilitation centers over the next week to prepare for the next adventure. The faster we can begin her rehab, the stronger she will be so we keep moving forward baby step by baby step.


Many thanks for all your support,

Rethier, Michelle, Olivia and Chloe

October 29 - 3 weeks

Post-op day 1 of her new internal shunt. Chloe in our eyes is more alert and movements on her left side look more purposeful as opposed to erratic looking as they were a couple days back. She did, unfortunately, have three more seizures early in the morning and they continue to adjust the dosing on her seizure medication. On a positive note, she now has been almost 48 hours without a fever! That is very exciting because since admission she has run a fever almost 2-3 times a day. Chloe also had another CT scan in the morning to provide a baseline image of the placement of her new shunt and the size of the ventricles of her brain. She also underwent a swallow evaluation that did not go so well, but this is by no means a failure or setback. Like the rest of her rehabilitation this will take time and patience.

Michelle and I are so proud of our baby girl. She never fails to impress us. Chloe is definitely moving in the right direction. We try not to get overly excited because we are very aware that with every step forward there is the possibility of taking two steps back. But as very optimistic parents, we are delighted at her progress. She has proven that she has the strength to overcome any obstacle that comes her way. That internal strength in addition to the prayers and positive energy that you all provide is a winning combination. This is a battle she will not lose.

Chloe is preparing for her very first Halloween! She, like her sister Olivia will be a pirate! Aaaarrggghh! Michelle bought very cute pirate costumes for Chloe and Olivia. We will be sure to post pictures for all to see.

Much love and thanks...

Rethier, Michelle, Olivia & Chloe

October 28 - Day 20

Today was a very long day of waiting!! Our early afternoon surgery did not actually begin until about 6:30PM. Chloe once again was a superstar. Surgery was a success and the team did not encounter any complications. Chloe was extubated in the OR and was alert and awake by the time she returned to the PICU. She showed some signs of discomfort but soon settled into her bed with some Tylenol and anti-seizure medicine that usually makes her sleepy. The incision sight on her head is a bit swollen but will heal in time, and she has sutures from the small incision made on her belly. Chloe, over the past few hours, has shown once again what an amazing fighter she is! She is back on her feeds and without a fight she also allowed the EEG technician to replace the electrodes on her head to monitor for seizure activity. Chloe also remains to be fever free now for over 24 hours.

I look at Chloe and am in awe of the strength and courage she already possesses at only 8 ½ months. It is so easy for us to dwell on what the next step of the plan will be or what setbacks she may have in her road to recovery that we forget how much she has already overcome in almost 3 weeks. We have heard so many times that we have a ‘long road’ ahead of us and we certainly understand and hear that but we also know that we need to be thankful for all the mountains she has climbed and the bumps in the road from which she has bounced back so swiftly.

To our dear sweet Chloe – we love you in every way possible. We are so proud of every little step you have taken. We grow stronger everyday with the touch of your fingers, wiggle of your toes, smacking of your lips. As we move ahead we look forward to the moment we can hold you close. God Bless you Chloe! Stay strong baby girl.

Many thanks to all of you for your thoughts and prayers today and always,

Rethier, Michelle, Olivia & Chloe

October 27 - Day 19

The doctors have made their rounds and the deliberation is now over. The final decision has been made to proceed with the surgery. Tomorrow afternoon Chloe will have a permanent shunt placed to help her drain the excess fluid from her brain. The external drain has done its job and we have been watching it drain some fluid over the past 24 hours and this has shown the doctors and us that Chloe does need some help in relieving the pressure from inside her brain. This again was not obviously our first choice. We had hoped that the initial surgery would alleviate the pressure and her body would be able to regulate itself but we move forward trusting our team and our decision to help her along. The permanent drain will run from her brain, behind her ear, and into her belly. It will not be seen by the common eye and Chloe will not know the difference.

The new anti-seizure cocktail they recently introduced seems to be working well as we have not seen any seizure activity. It does make her very sleepy though so she has been dreaming for most of the day and night. When she is awake, though, Chloe’s eyes are open and bright. Chloe did have another low grade fever overnight but we are all getting used to that and are keeping her temps under control.

We ask for your positive thoughts and prayers as we prepare Chloe and ourselves for another surgery. Again, we are so overwhelmed by everyone’s support. We have found that not only our closest family and friends have been following our blog and lending support, but there are many of you out there who are friends of friends who have left comments or sent along messages. And though we do not know you, we thank you from the bottom of our hearts for your prayers and wish you and yours all the best...

With many thanks and love,

Rethier, Michelle, Olivia & Chloe

October 26 - Day 18

Confused and frustrated. That is how we're feeling at this moment. Not with Chloe's progress - Chloe has proven that she is a remarkable baby in how far she's come since being admitted over two weeks ago. Michelle and I are puzzled with the lack of communication amongst the different teams caring for Chloe. One team says, "she will not require a permanent shunt" to facilitate drainage of excess fluid in her brain and another team says she will require it. Another example is being told Chloe did not have seizures and the next morning being told she actually did have seizures during the same time period where we were told she did not. Are they serious? We do not mean to sound ungrateful, because let me make this clear - we are VERY grateful and happy with the care she has received. We just feel that physicians from the different specialties involved with Chloe's care should speak to one another before speaking to us. We have enough on our plate without having to decipher what is fact or fiction.

As for our sweet girl, Chloe had a pretty uneventful day. She did have seizures picked up on her monitor early in the morning. Neurology is adding another anti-seizure medication to her regimen and the new PICU attending is looking into staggering her doses of medication at more frequent intervals with the thought that Chloe might be metabolizing her medications faster than most babies her age. Chloe is also starting to look more and more like herself. Her fabulous cheeks are a little smaller in size but still present, pinchable and kissable. She truly is a beautiful baby and Michelle and I are blessed to have such wonderful children.

Michelle went to work today to speak with her administration about needing to be with Chloe throughout her hospital stay and during her rehabilitation. Let me preface this with saying that Michelle recently started a new teaching position at St. David's school and wanted to do right by them and the boys by speaking with them about finding a replacement for her role. The whole school community has been such a support for Michelle and our family - sending us meals and treats to the hospital and our home, checking in regularly and most of all giving us time to be together during the past couple weeks. Michelle had been so excited about returning to teaching and was having a blast teaching her new class of kindergarten boys. The hope is that Michelle will be able to return to work and return to the family she has found at St. David's. Until then, we remain forever grateful for the compassion, love and kindness they have shown us even after only knowing Michelle and our family for just a few weeks.

Today, I returned to work. Michelle and I both felt that it was time that I ease my way back to work and attempt to establish some type of normalcy back into our daily lives. And like Michelle, my superiors and colleagues have been nothing short of amazing. My coworkers absorbed my absence from work without question and continue to impress us with their kindheartedness. "Family first" is the resounding motto with them.

Is it possible to say, "thank you" too many times?

Thank you.

Rethier, Michelle, Olivia & Chloe

October 25 - Day 17

We received results this afternoon from Chloe's morning CT scan. Unfortunately, the size of the ventricles in her brain had not come down in size since her surgery. Quite opposite, it has increased slightly in size causing slight pressure on her brain. It's difficult to get an actual picture of what precisely is going on as we hear differing opinions throughout the day.

As of yesterdays post we thought we were 3 days without seizure activity but were told today that she did have two more seizures yesterday afternoon which we are only hearing about now. Not exactly the news we were hoping to hear. The team is now deciding whether or not to convert her external tube draining excess fluid from her brain to a permanent internal one. If they should place the permanent drain, her surgery will be early this week.

Today has been somewhat of a setback but we remain positive that Chloe will push through this. She has shown us such amazing strength so far and know that she will put up a fight.

As for Olivia, she has been visiting Chloe everyday since last Thursday and has been the best big sister. She looks over Chloe's bedside and blows her kisses, sings to her over the phone before she goes to bed, visits the nurses and doctors around the unit and entertains them with her nursery songs, and reminds everyone to pray for Chloe. She still asks for her sister every night and every morning and it is hard for us to explain to her why she is not home to play. We miss the mornings and nights watching Olivia dance for or read to Chloe while lil' sis smiled and looked at her big sis in awe but know that those days will be back again, hopefully soon.

October 24 - Day 16

Almost 72 hours seizure free!! Fevers remain, but that's par for the course. The team here feels that the fevers are central in origin - meaning, stemming from the brain rather than from a bacteria.

The tube/drain that measure the pressure within her brain remains normal only elevating when Chloe falls into a deep sleep and starts snoring or when she becomes nasally congested. A quick suction of the nose and reposition of her in bed corrects the high reading. Neurosurgery is hoping to remove it Monday if her readings remain low.

All in all, a pretty quiet day. A CT scan of her brain is scheduled for tomorrow to see if her hydrocephalus has come down in size.

Chloe remains comfortable and continues to gain strength and movement on her right side. Slow and steady wins the race...

With love,

Rethier, Michelle, Olivia & Chloe

October 23 - Day 15

Chloe had an uneventful day. Thank goodness for that. She continues to have the occasional fever but thankfully no seizures for almost 48 hours!! The drain attached to her head has virtually no drainage (that's a good thing) and the pressure within her head remains low (that's a good thing as well). The neurosurgeon is contemplating removing the drain in the next couple of days if she continues with her current status. Chloe is more alert and is slowly starting to move her right arm more spontaneously. The neurologist has said that Chloe's EEG still remains somewhat flat, but is still too early to say what it might look like in the next couple of days. Baby steps...

I have to truly say that there has been one positive aspect of our daughter, Chloe's hospitalization. We have encountered some of the most genuine, kind and beautiful people who have cared for our daughter. Possessing the ability to do your job extremely well in addition to having the most pleasant and understanding bedside manner is a skill not learned - but a gift. You have the gift to juggle patients on a very busy and intense critical care unit, and at the same time see the big picture of all who are affected - not only the patient but the family as well. We appreciate the time you take from your busy day to stop and check on Chloe's status or to sit and put your arm around our shoulders to reassure us that Chloe will push past this terrible illness. This unfortunate situation brought you into our lives - and we are thankful for that. We will never forget the professionalism and care given to our daughter as well as the compassion shown to us as parents.

At the risk of playing favorites (and we do have favorites) I will not name any specific person(s), but you all know who you are. Thank you.

Rethier, Michelle, Olivia & Chloe

October 22 - Day 14

Being in the healthcare industry for over 13 years I wasn't surprised to hear that Chloe's surgery was bumped from its original time slot of 10am. I would have been more surprised if it actually went on time. Chloe went for surgery at 2pm, and like the true superstar she is - she came out like a champ. The neurosurgeon was able to successfully drain the fluid between her brain and skull and sent off fluid specimens to the lab for analysis. After doing this, he placed a small tube (resembles a plastic straw) into her head to facilitate the drainage of any excess fluid buildup in her head. This procedure required Chloe to be intubated again but was quickly extubated once the procedure was completed. She again, is breathing quite easily on her own.

The surgery itself was a success in that it helped to relieve the pressure building in Chloe's head. Whether or not it corrects her seizures or frequent fevers is still an unknown. Chloe was started on another anti-seizure medication a couple of days ago in addition to the one she had currently been taking. For the moment she has been free of any seizure activity for almost 24 hours and they continue to monitor for any seizure activity with the use of the video camera and EEG electrodes.

In respect to her motor movements. Right arm and leg movements are somewhat less than that of her left side. This is a new development because last week her right side was the stronger side. Neurology is not exactly sure what to make of this. Actually, the neurology team has great difficulty in predicting anything. And this isn't a knock on neurologists. We completely trust the care they have provided Chloe. It's just hard to imagine going into a specialized field of medicine such as neurology knowing that once you correct a problem you really have no idea what the outcome will be. That being said, the neurologists are hopeful that with this surgery, MAYBE, it will help quiet her seizure activity. For now the best advice we've received is to take everything one day at a time. Michelle and I know that Chloe is remarkably resilient and will bounce back from this like a true champ! We need to remind ourselves that it's going to take baby steps - but Chloe will get there.

We forgot to mention yesterday that Olivia saw Chloe for the first time in almost 2 weeks! She was very excited and Michelle and I were so happy that we were able to do this for both of them. Cornell has a wonderful program called, "Child Life" and the instructor for this program provided us a doll which we fashioned into a patient with IV's, patient ID band, feeding tubes etc. to prepare Olivia for what she might expect when she sees Chloe. We prepared Olivia with the doll before seeing Chloe and it was a great success. Olivia wasn't scared at all and was overjoyed to see her sister.

Two weeks ago our family began a very new chapter in our lives. Since then we have received an outpouring of prayers, well wishes, lunches and dinners being sent to the hospital, flowers waiting for us at our apartment, food gift certificates and offers of housing. And for that we say thank you. We are truly blessed and grateful to have such wonderful people in our lives. Words cannot describe how truly humbled we are by your deep generosity, love and support. While this new chapter will be very challenging, filled with many difficult decisions and uphill battles - we remain positive that we will persevere knowing we have such a strong support system in all of you.

Much love,

Rethier, Michelle, Olivia & Chloe

October 21- Day 13

It's looking like Chloe's surgery will go tomorrow morning around 10am. We were on the add-on list for tonight but depending on any emergent surgeries that may arise we could possibly get bumped to much later in the night. The neurosurgeon is more comfortable working with his own team in the morning rather than the on-call team at night. We agree.

Again, we ask for everyone's prayers and positive energy for Chloe to get through her surgery like a superstar.

Much love and thanks,

Rethier, Michelle, Olivia & Chloe

October 21 - Day 13

We received the MRI results this afternoon. Compared to Chloe's last MRI, the scans showed that she has an increased buildup of fluid around her brain. The MRI also showed some new, but small areas of infarct/strokes (damage) to her brain. Still unknown to the team here is if the swelling around her brain is contributing to her seizure activity. As it stands now, neurosurgery has been consulted to determine whether or not surgery is needed to correct this excess fluid. If surgery is needed Chloe, will most likely go sometime this evening.

Please continue to pray for our baby girl and keep her in your thoughts. It has been a hard day of news for us and we need all your strength to help get us through.

Rethier, Michelle, Olivia & Chloe

October 20 - Day 12

More fevers, more seizures. Very frustrating for everyone. We can only imagine what Chloe is going through.

On a lighter note, Chloe sat up in a reclining chair for the first time with assistance from Physical/Occupational therapy.

Neurology scheduling a repeat MRI in the morning to see if there are any changes from her initial MRI last week.

Trading Places

At times it's hard to imagine that the baby we have been sitting bedside for is the same baby that just two weeks ago slept beside us in her crib. The same baby that we took to Central Park Zoo.  The same baby we took out for weekly trips to Long Island to visit with Hapa & Grandma. The same baby that we bounced on our lap and sang lullabyes to before bedtime.  And now we stand over our baby feeling so helpless. IV medications being pumped through her, watching as the teams of doctor's go by discussing her diagnosis and care, seeing her being fed by a tube through her nose. All the while wondering if she realizes what is happening to her. Why?? What could she have possibly done to deserve this?? Like any parent, I would trade places with her in a heartbeat.

As most of you know, Michelle and I take turns staying overnight at the hospital. I'm not sure what's harder - watching over our sick child in the hospital or coming home to a very different feeling apartment and having to explain to Olivia why we cry at night. Too many reminders of our baby girl surround us. Her empty crib and changing table in our bedroom, her bathtub in the bathroom, bottle warmer in the kitchen and all the baby rattles and toys she enjoys so much.  Like I said, I would trade places with her in a heartbeat. I should be in that hospital bed.

October 19 - Day 11

Fevers!! We just can't seem to get a handle on how to control/treat Chloe's recurrent fevers. She ran as hot as 103 this morning and we were informed by the neurology team that she experienced more sub-clinical seizures during her fever for roughly 1.5 hours, off and on. As you can imagine, Chloe slept for most of the day after a morning like that.  They increased her anti-seizure medications and added an extra dose of Ativan (another anti-seizure med) which I'm sure played a part in her sleeping as well. The team now has a plan in place that once her temperature hits 100 degrees she will receive Tylenol. No more waiting until she hits 101 before treating.  
 
Now here's the twist... At 5pm - For the first time since her hospitalization, I (daddy) was able to hold her for about 30 minutes and she did really well. I of course loved it! Once we placed her back in bed, the nurse checked her temperature and it was 95 degrees!!!  Vital signs were totally normal and she was not in any distress. We rechecked her temperature and got the same result... Absolutely crazy - and our roller coaster continues.

October 18th - Day 10

We finally have an answer as to whether or not Chloe was having more seizures. According to the neurology team Chloe did have three small seizures under a minute in length. The discontinuation of her anti-seizure medication (Dilantin) did not have any effect on these seizures as the level on the medication was sub-therapeutic. So for now, Chloe remains on her phenobarbital IV medication to quiet any seizure activity.

On a much lighter note, Michelle was able to hold Chloe today! Michelle held her for an hour as Chloe slept in her arms. She has been doing well on and off her CPAP machine that helps her breathe. Chloe has been running a low grade fever for most of the day which the team is watching closely. The team is still unsure why Chloe continues to spike fevers but we are all working to find out its source.

An Act of Kindness

In reviewing our past blogs we failed to mention the most gracious act of kindness we received the night we brought Chloe into the pediatric emergency room at NYP - Cornell. When we arrived to the triage area there was one mother ahead of us carrying her sick child. The mother, seeing the distress that Chloe was in, offered us her child's place in line so that we may be seen. She simply stated, "your baby is in pain, go ahead of us." The triage nurse called for the next patient and this mother told the nurse to take Chloe ahead of her child. After two hours of the ER team working on Chloe and now heading toward CT, Michelle saw that this mother was only now being taken in for her child to be examined. A simple nod of the head and silent whisper of thank you was exchanged. She returned the nod and understood. To that gracious mother, we offer you many, many thanks and wish nothing but the very best for you and your family. That act of kindness cannot be repaid because you were a stranger before you met us. The only way we know of repaying that act of kindness is to pay it forward and be as generous and kind to people we know as well as to strangers we encounter in our daily life.

October 17 - Day 9

The roller coaster ride continues...


Earlier this afternoon the neurology team recommended Chloe’s anti-seizure medication (Dilantin) stopped because the videos and her EEG's showed no signs of seizure activity. Unfortunately, they are now recommending that she keep the EEG monitor for another 24 hours. At 10pm, I received the news from the pediatric resident that the neurologist who reviews EEG's of Chloe called and alerted her that Chloe actually had three sub-clinical seizures prior to her Dilantin being stopped. These seizures are not seen by the eye but are picked up on her monitor. It is frustrating because the person reviewing the EEG's cannot say when these seizures happened or their duration. We're very confused right now. We are getting two different reports from two different people. So of course we now question every little arm movement or eye twitch as some type of seizure activity. We are awaiting the neurology team to round in the morning to answer the question of whether or not Chloe is still having seizures.

October 16- Day 8 & Michelle's Birthday!

Today was a big day. After being almost 24 hours without fever and seizures the team decided that it was time for Chloe to be extubated!! At the same time they felt it was a good idea to do a repeat lumbar puncture to make sure we were heading in the right direction.

The lumbar puncture went smoothly and we will hopefully know the results at the very latest Monday. The extubation on the other hand wasn't without some excitement. From what we were told, once extubated, Chloe had much difficulty breathing and required multiple breathing treatments to help her breathe easy. The team contemplated re-intubating her again if the treatments did not help. Three breathing treatments later Chloe was breathing much easier and has been a superstar.

Happy Birthday to my beautiful and wonderful wife!! Chloe's extubation was a wonderful present for her. We're moving in the right direction now and pray everything else falls into place.

Rethier, Michelle, Olivia & Chloe

October 15th - Day 7

Chloe is still running fevers and unfortunately for her, every time she is febrile the physicians need to draw blood from her to be sent for blood cultures. For those of you who haven't seen her....she's a pretty chunky (well fed) baby. The residents usually require two to three sticks before they can draw sufficient blood. Just as an fyi - when we first admitted her a week ago, the ER staff attempted to stick her well over 20 times to start an IV. I'm sure the fact that she was in a septic shock didn't help the situation.

Today the team here is attempting to rule out all possible factors which may be contributing to her daily fevers. Number one: remove foley catheter. Chloe is finally looking like herself again now that she's lost all that water weight from the fluids/blood products she's received since being admitted. And number two: change/replace her arterial and central venous line because they have been in place now for a week. Not exactly an easy task since she's such a chunky monkey. We're hopeful that by doing so this will rule out or discover the cause of her fever.

As for Olivia, our oldest daughter, it's been a difficult week for her as well. I'm sure even at the age of 3 she knows something is not right. It's sad knowing that she associates Chloe's hospital as the "spinning door" because there is a revolving door at the entrance of the hospital. She's been to the hospital everyday since Chloe has been admitted but has yet to see her. Olivia asks about Chloe often only to hear the same reply, "Chloe is in the hospital because she's not feeling well." We attempt to keep Olivia's schedule as routine as possible but as you can imagine is very difficult. Michelle and I have not slept at home together for the past week because we have either been both sleeping at the hospital or rotating who stays overnight with Chloe.

So, the roller coaster ride continues for Chloe as do the highs and lows that we experience throughout the course of a day. We constantly rack our brain thinking if there was anything we could have possibly done differently to prevent this. Alas, we're met with the same answer from all the doctors with whom we speak, "No."

Once again, thanks to all who keep us in their prayers.

Rethier, Michelle, Olivia & Chloe

October 14th - Day 6

Dear Family and Friends,

Reth and I have been so overwhelmed by the flood of supportive and loving phone calls, emails and visits we have had during this time. We apologize if we have not yet gotten back to you on an individual basis. It has been extremely busy as we sit by Chloe’s bedside, keep up with her many teams of doctors and try to make sense of all that is happening.

There is still a lot of uncertainty that surrounds what Chloe is going through. As our latest update read, we were hopeful after she woke briefly during the day that we would have extubated her but our roller coaster ride goes on. With a spike of a fever and her seizures, we have begun another round of tests and cultures to find out if another infection has come up or if this is all still a part of her meningitis. She is also being given more antibiotics to help fight her infections and is being given more blood. Our team took her for a CT scan about an hour ago and the preliminary read from our doctor (who is not a radiologist and can only give a vague report) is that there was no bleeding or any suspicious areas that come up.

As we watch Chloe, we still see some spontaneous body movements and some eye opening and are very hopeful that once we figure out what these recent setbacks indicate that we will soon extubate her.

Again, we thank you for your thoughts and prayers. Many of you who are close by have also asked about our room information to come by or call. We are at New York Presbyterian Hospital – Cornell in the Greenberg Pavillion on the 6th Floor, Room 400. There is a direct line into our room but it is best to reach us by cell phone or email.

With love,

Michelle, Reth, Olivia and Chloe

Update on Chloe

Thank you so much for your well wishes. Michelle and I remain positive during this very difficult time.

The team here at NYP Cornell were able to successfully wean Chloe off her sedation. She woke briefly during her PT/OT evaluation but shortly thereafter she started to have short seizures lasting up to one minute. She again is under sedation to quiet her seizures and is under EEG monitoring once again. For that brief moment before her seizures began, we were able to see our daughter's eyes which we have not seen since she was first admitted. With that short glimpse of her eyes we remain positive and hopeful. The team here will re-evaluate her status in the morning and for the time being her planned extubation is being put on hold until they determine the cause of her seizures.

We apologize that we have not been able to respond to everyone's calls and emails, but please know that your prayers, well wishes, offers of housing and food are very much appreciated. Your kindness is overwhelming. We are very thankful to have such loving family and friends.

Thank you for all your continued support.

Reth, Michelle, Olivia & Chloe

Chloe's Health Status

Hi All,

I apologize for the late email but I wanted to keep everyone up to date on Chloe's status. For those of you who haven't heard Chloe was hospitalized on Thursday, October 8th. We brought her in emergently to NY Presbyterian Cornell for what was diagnosed as septic shock. The staff in the peds ER were wonderful in the way they expedited her care, testing and transfer to the PICU. Once transferred to the PICU her status worsened and she required intubation because her respirations had become more labored and epinephrine and dopamine to support her blood pressure. Her lumbar puncture diagnosed her with bacterial meningitis (strep pneumo) which contributed to her septic shock. Since then she has required multiple blood transfusions, platelets and fresh frozen plasma. The CT scan that she received showed "areas of concern." Today we received the results of her MRI and although the final reading has not been completed the preliminary results show many small areas where damage (infarct) has occurred. The extent of damage is uncertain. We were reassured by the neurologist that it is better have to smaller areas rather than a large area of damage. He also mentioned that she was fortunate that this happened at a younger age where infants have more brain cells than they actually need - in a nutshell, her ability to relearn motor tasks is much better. He did say she will have a long road to recovery and until she wakes up we really have no idea to what extent the damage has taken on her. Chloe currently remains in a medically induced coma and is stable and resting comfortably.

Michelle and I remain positive during this difficult time and are very thankful that we have a large support system in our faith, family, friends and coworkers. We ask that you keep Chloe in your thoughts and prayers so that she may recover from this illness quickly and without any permanent neurological impairment.

We will keep you all updated with her status.