A month at home

A month has passed and it has felt wonderful to be home. I’ve always loved waking up to the sounds of the girls calling for us to get them out of bed and having our home filled with their chatter, laughs, and cries before bedtime. You take it for granted, we take everything for granted. And then you realize when it’s been taken from you just how much you adored it and how much you miss it. Now that we’re all home and back together again, I love those sounds of home that much more. Reth and I always enjoyed our time together and with the girls and always knew how precious they both are to our lives but after something like this, well, words can’t express just how much love we have for each other and for these two little ones.

It has been a treat to sit down together for dinner and talk about our day. Olivia usually leads the conversation and we are blown away at how much she has grown. She tells us about her day and shares stories about her friends. Chloe is usually awake and sits near us in her chair. She, too, is ‘chatting,’ making noises and having her own conversation or at least trying to get our attention. Nighttime at our house was always, and still is, a race to get everything done – dinner, play, bath, bed – but it’s different now, a bit more fun, somewhat more relaxed. Olivia loves that her sister is home and sits near her almost every chance she gets. Chloe is the first person she looks for when she gets home from school and every night she wants part of her bedtime routine to be lying next to Chloe and reading her a book. Big sister Olivia takes great care of Chloe – she makes sure her blanket is set out on the floor for her playtime, she hugs and kisses her without being asked, she pats her arm or her hair when she’s upset, and she doesn’t let others play with Chloe’s special box of toys (though she does help herself every once in awhile). Olivia has truly and proudly taken on the role of ‘big sister’ and has been very fair about understanding that Chloe has many more needs these days. Though we have had some moments when Olivia has demanded our attention, she has impressed us with her patience and love. It is amazing to witness their sisterly bond. They certainly have a way with one another. Chloe always seems to know and senses when her sister is close by – she calms almost immediately – and when she finally has Olivia in her sight, her eyes grow even bigger and you can see the excitement and love that she has for her big sister. Chloe has not yet shared her smile with us but I can almost bet that it will be big sister Olivia to get her to open up and work her muscles to help her smile shine through.

Chloe has been showing us that her eyes have been getting stronger and she is able to visually process more and more. Her initial tests showed that her optic nerve has been intact but that she is not yet figuring out a way for her brain to really open up her eyes and understand what’s going on around her. In the past few weeks though, Chloe has been looking around left to right, up and down. Her tracking of objects is not completely smooth but her focus is sustained a bit longer than when we first came home and she seems much more attentive. Her vision is one of many things we worry about and it has made us so happy that her eyes have begun to really open. Chloe used to kick her feet to let us know she’s awake, now she gives a little cough and a big sigh. As I approach her crib, I see her big eyes and these past few weeks I’ve seen her really focus on my face. When she really sees me, I hear the most precious sound of a coo and I melt. I know I have a long day ahead of me but with that sound I am filled with so much awe and pride for this little girl that I feel like I can conquer anything.

Chloe and I start our day slowly since most of her therapies start in the late morning or afternoon. We have established a routine of massage, stretching, and playtime on the playmat while we listen to music. Chloe is so awake and alert these days. She is sleeping through most of the night and only takes maybe one nap a day. Though she still grimaces at being moved around and being pushed to her limit, she tolerates much more and we see her growing stronger each day.

We did not have the best start in terms of getting the services that we wanted for Chloe when we first returned home. The agency we had planned to work with did not come nearly as much as we were anticipating. At Blythedale, Chloe had PT, OT, speech and infant stimulation 5 times per week. The first few weeks at home, we were lucky to get 2 visits from the agency’s PT. I panicked, I cried, I even thought about bringing Chloe back to the hospital but we knew this was yet another test. I was home, I was the only one to take care of Chloe and I HAD to advocate for her. So, I painstakingly made phone call after phone call to everyone to make sure we could move towards another plan. I was on the phone the whole first week and felt defeated. It was painful to recount over and over and over again the tragedy of bacterial meningitis and what Chloe has been through. Every person who came to evaluate and every person we had to speak with needed her story of what she was like before, what she endured, and what her limited abilities are currently. It has never been easy to walk through this story but it was even harder to speak about it as a whole. The second and third week, I took a deep breath and waited to hear back some answers from all the complaints I placed. And as I waited, I sat with Chloe and muddled through the exercises we learned at the hospital. Chloe and I pushed each other to get things done and though some moments of our day were hard to push through, Chloe’s accomplishments were far greater than any defeat that may have arisen. Reth would come home and see a different Chloe, friends and family would stop by and notice her progress. I am with Chloe every second of the day and it is hard for me to see how far she has come so it has been nice to see other’s reactions when they visit her. And at the end of a month, I’m proud to say that we have all seen a different and stronger Chloe.

And all those phone calls and complaints have paid off. We were assigned to a great service coordinator for Early Intervention and upon hearing our troubles of therapies and home nursing, she was able to initiate an interim plan until our official Family Plan meeting takes place. So, Chloe and I now have our own routine as well as 3 visits of speech and feeding, 2 visits of PT and 2 visits of OT.

It’s been a crazy month but one of much joy and happy surprises. We are finding out a lot about Chloe and ourselves. There is a lot more to tell as we are in the middle of many evaluations and testing but we will update as we hear the news.

Oh, and one more nod to Olivia – She’s all potty trained!! And she is moving up to the Bumblebee Class (a preschool class in her daycare) Yeah, we are very proud of her.

Much love,

Michelle, Reth, Olivia and Chloe

Mixed emotions

It’s been a long time since I’ve sat and written on the blog. It’s been difficult for me to get my thoughts together and talk about what Chloe has been enduring and what we’ve been going through physically and emotionally as parents, as a sibling, as a family.

“It was supposed to be her first cold.” I kept saying as I rocked back and forth above Chloe in the ER when the reality hit that this was all more than just a high fever and lethargy. It’s still hard to digest all that has happened these past three months. We’ll always remember the events that led up to this, where we were, what we were doing, the last things before everything came crashing down. We did all we could and it was all just a ‘fluke illness’ people tell us. We still have no idea how Chloe got meningitis. We will never know. It really was her first cold and first real temperature and we took her to the doctor twice that week finding no indication of what was to come.

I remember saying to my friend at work seconds before I left that last day, “I just want to see her smile.” That was all I’ve wanted since that day. It hurts when your child is sick and you watch helplessly. I know I’ve written about my heartache before and though Chloe is ten times better and she is finally home, we still suffer from heartache and continue to heal as we pray and hope that she continues to regain her strength. Oh, but how a real, true smile would wash away so much hurt and pain right now. I must say, Chloe had the best gummiest smile that could light up anyone’s day. Her whole body was put into that smile and she just lit up the room. I cry and sob just thinking about how much I miss it.

Reth and I still beat ourselves up over where we could have taken a misstep. Should we have taken her to the ER when her temp first spiked, why didn’t I take off just one more day to be home with her, was buying the pumpkin with Olivia necessary that day delaying our return home, did I take too much time playing with Olivia on the bus and in the taxi that kept me from getting to Chloe in time? I know this was no one’s fault but it’s hard, very hard, to simply accept the fact that this was just an unfortunate accident of an illness and series of complications.

Three months have passed. We missed the fall and part of the winter. Chloe outgrew all her new clothes I had just set up in her drawers before getting sick and completely surpassed a whole size. It seems like we moved through the holidays because there was no excitement of all the preparations that we would normally do. But we are home, we are all home together under one roof.

It still surprises Olivia to see all of us at home. She has become used to her routine of daddy being with her most days and nights and getting her dressed in the morning that she almost looks surprised to see me (happily surprised I think, I hope). She is so proud of her sister! I remember telling her that Chloe was coming home for good, not just for a home visit, and explaining that she wasn’t sick anymore but that she still had to grow stronger. Olivia looked at me with her big eyes and said, “Mama, now I can be proud of my sister!” and she smiled and raised her hands up high. Olivia doesn’t understand that Chloe can’t go back to school just yet, she asks almost every day if Chloe will be in the infant room today. Last night, though, she made a comment that Chloe is getting stronger so we know that she is making some sense of the changes around her. The girls now spend lots of time on our bed so that Chloe can be propped up comfortably and we can bring her toys to her and Olivia can once again read books and sing songs next to her sister like she used to. It really is one of the best sights I’ve seen in awhile and truly touches my heart each and every time! Olivia has been amazing. I don’t know how I could have made it through this ordeal without her. In a three year old, I find endless amounts of hope and faith and love…and energy. She has inspired me and given me the strength to push through my hardest moments. Thank you Olivia for saving me! Since we’ve been home, Olivia acts as though life has not skipped a beat and she accepts our changes as the norm. Surely, we know this will be a big transition and Olivia will have to relearn the idea of sharing mommy and daddy even more than before but she is taking it all in stride. She knows that Chloe has a ‘boo boo band aid’ on her belly that helps her get her milk. She has familiarized herself with the loud noise from the suction pump that we need to bring out to help clear Chloe’s airway when she is congested. She watches us prepare and give her medications through her G tube throughout the day. I wish I had Olivia’s enthusiasm and optimism. She looks at all these things as if nothing was different and carries this attitude that all that we are doing is simply helping her sister. I wish I could be so carefree when I do all this but…

In the back of my head, I sometimes think about what would have been and how our life was supposed to be so different. I know we’re not supposed to compare siblings but at this age, Olivia was starting to take her first steps, making a mess pulling books and toys from everywhere, and exploring the world around her. We know that Chloe will do these same things someday but being patient for these things to happen becomes harder and harder as we realize that she is at a newborn stage right now at 11 months of age. It’s hard to be home again because it’s a reminder of the abilities Chloe had beforehand. Her exersaucer she loved to jump in now sits in the corner, the Bumbo she loved to devour her food in now sits in the storage pile. Her jars of food remain uneaten and untouched in the kitchen. Even her favorite toys need to be kept aside for now because she’s not ready to use them. I cried the other day passing the long mirror in our room where Chloe and I would spend so much time laughing as she played peek-a-boo with herself. It was her favorite game! And the chair and ottoman where she would stretch in my arms as I held her every morning where she would drink her first bottle of the day before we all left for school and work is now unused and covered with pillows, blankets and miscellaneous things that need to be put away.

I am so thankful that my baby girl is home and is for the most part as healthy as she can be. I just never imagined her start to life to be so hard. No parent ever thinks of such things. We all think we are invincible and just like that...

So, now I try to pick up the pieces and find new light. Little by little, I unpack our boxes and bins of clothes, toys, and blankets from the hospital, we clumsily sift through the boxes of medical supplies – syringes, feeding tubes and bags, dressings, etc - and try to organize Chloe’s things. Slowly, we are going through our pile of mail, emails and phone calls. It feels good to be among our things again. Chloe has responded well to being home. She has fallen into a better sleeping pattern now that she is back in her crib. We can hold her whenever we want for as long as we want. It’s funny the first day we were home on our own, Reth called to check in and wanted to make sure I wasn’t exercising Chloe the whole time and left some time to just hold her. Little did he know that I held her for a majority of that day and have not really let go ever since.

Chloe looks amazing and has come a very long way. She is so much more alert and awake and is trying so hard to just soak everything in. We are still unsure of her vision and hearing but you can see in her eyes when she is calm that she is looking everywhere and she coos to let us know that she likes something. Her temperament is still a bit fussy because she doesn’t have many ways to communicate with us what she really wants or needs but we continually try to figure things out together and make her as comfortable as we can. Our wonderful therapists gave us so many ideas and ways to soothe Chloe that we are able to manage and maneuver through our day a little easier. More and more, we see so much of Chloe waking up and keep hoping for more and more everyday. It’s a long day - we are exhausted - but at the end of the day as I sit on the couch or lie in bed after checking on Olivia sleeping amongst her many stuffed animals and looking over Chloe curled up in her crib, Reth and I are at peace and, most of all, happy that we have been blessed with our family.

The long journey continues… Since we’ve been home, there hasn’t been much time to just settle in. Chloe and I have been very busy trying to stay on top of her exercise regimen and also try to get her services in order. We have applied for Early Intervention but it will take awhile for services to begin. Unfortunately, our interim services of nursing care and therapies have not been scheduled as we were expecting so we are still trying to figure things out. In the meantime, Reth and I have tried to encourage Chloe to play and move and strengthen her muscles as much as we can as they taught us at the hospital.

It feels good to watch over Chloe at our own pace and in the quiet of our home. I sit here now with her while she sleeps next to me all bundled up. She looks great and so peaceful. The hum of her feeding pump still upsets me because I miss feeding her the bottle and spoon feeding her but when she wakes I will prepare a taste of some rice cereal for her and hope for successful results.

We hope that our services will begin sooner than later. As our therapies resume and Chloe continues to make progress, we will update the blog as much as we can. We hope you will continue to follow Chloe. We still need your support to help our baby along her way.

Lastly, we want to say thank you again to all of you. We would not have come so far if it had not been for our family and friends, both old and new. Each of you has played a special part in Chloe’s life whether through your letters, phone calls, visits, smiles, tears or hugs. There are too many moments to point out that really made a difference in Chloe’s life and in our lives over the past few months. I could write them down but all your acts of kindness to our baby girl and to our family are endless and we are forever thankful.

Much love and many thanks,

Michelle, Rethier, Olivia and Chloe

YouTube address for Chloe's video

Hi All,

If you are have difficulty watching the video through my Facebook link, I also posted it on YouTube. Please follow this link:

http://www.youtube.com/watch?v=VFav-W8Z6yw

Rethier