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