Noah had his Halloween party at school today. He was so excited to go to school in his costume. He had a blast! He came home with all of his Halloween art and we decorated the house with it. Now that we've given up on selling our house it's time to turn it back into Noah's trophy case with wall-to-wall construction paper art - everywhere... He is so proud to hang it up and I love that he has the creative bug... I was the same way when I was little and he gets so happy when the markers, paint, crayons and sticky glues are within his reach. Tomorrow is Fun Day Friday so we'll have some special time together to go to the pumpkin patch and just hang out. Cecily's nurse will be over for a few hours so Noah and I can have our special date. I look forward to our Friday routine. No laptop. No conference calls. Just time with the kids and some special attention for my darling Noah.
Cecily is thriving and we are through the woods! What a relief. She does not appear to be having any more pain and her vomitting has reduced to 1-2x a day. I won't say the last two weeks have been easy... but the end result is very positive and we are grateful to have her at home and to have her feeling better. She is back to her old tricks and her spunky personality is emerging once again. I can tell she is going to keep us on our toes. She has us all wrapped around her pinky... especially Grumpy Gramps.
I just wish I could slow things down...Life is all together too busy. With Brien's work, my work, caring for the kids, the activities, the soccer games and swim lessons, the dotor appointments, and therapy sessions, the birthday parties, and all the other demands on our time...life starts to become one giant to-do-list. Cecily has taught us to stop and smell the roses but there are days when I feel like I'm just getting cut on the thorny parts... not really enjoying the sweet smell and the beauty of all of it. It is amazing how one day I can have complete perspective and can delight in a very simple pleasure... and the next day I am overwhelmed with the chaos and the simple joys get swept away. I am not going to beat myself up over this. I just hope that I can get better at managing it all.
And then I remember my Auntie Madeleine. As I sit and type this I am thinking of my Uncle Peter, her devoted husband, who is presently in hospital in the UK awaiting a pretty big surgery. And then the perspective returns and the to do list just seems like a gift. I get to do all these things... I can do all these things... It is my choice to do these things...Cecily is able to go to appointments and she is not in the hospital. Noah has friends and gets invited to a lot of parties. Brien and I have jobs while many people across the globe are unemployed. We have our health. We have each other. We could stop to smell the roses if we wanted to... We just need to make the time. Onwards and upwards!
Welcome home hugs from Noah to Cecily. He missed his baby sister and his Mommy. We had a celebration dinner with Grammy and Grandpa. We know what a gift it is to be able to leave the hospital with a healthy report!
The recovery process is always harder than we think it will be - but it is just so nice to have our little angel home. In this picture she is looking very grown up... but she will always be our little baby. And she is finally home where she belongs. Onwards and upwards!
Our little angel resting after a very big day! We crammed a lot of procedures into this one OR visit but we hope that this makes her much happier and reduces the pain she has experienced with her tubes.
Thank for you the support we have received for this hospital visit! We'd like to respond to all the lovely calls and emails regarding our sweet Cecily. The surgery was a success and she is resting. She is definitely having pain, but the medical team is working to make her comfortable. Our amazing surgeon, Dr. Kling, decided to give her body a rest so we will resume the tube feeds tomorrow. We'll likely be here for a few more nights to make sure everything is going well. We are grateful to the amazing staff at Rady's that always take such wonderful care of Cecily. We love the new Acute Care Pavillion. It is so beautiful and it makes staying in the hospital a lot easier. We have a beautiful room, a spacious bathroom, murals for the children and a window that makes you feel less trapped and more free.
Noah came to the hospital to visit last night. I was so happy to see him and he was very proud to carry in my dinner. After telling me about the five kicks he made during his soccer game he hopped on the chair next to Cecily's crib and begged to climb inside. When we explained this wasn't a good idea he wanted to know how he was going to be able to give her a hug... He is such a love bug and we are just grateful that we had a private room so he could finally visit Cecily. And perhaps the best part of the visit, Cecily said "Noah"! She shouted it clear as a bell We were thrilled! Noah has been waiting for this day!
And last but not least, we're working on our 6th room makeover. We just picked the family and we can't wait. It will be a very kid-friendly tribute to Elmo and Sesame Street. We're hoping to complete it in early November. Onwards and upwards!
Tomorrow is a big day for little Cecily. Despite having been through this numerous times this just does not get easier. We know the routine... but this is anything but routine. I just feel this sense of guilt about putting her through yet another surgery. Is it the right thing? Are we doing the best thing for her? Should we give her more time? I wish I could stop the nagging questions in my brain.
She is doing so well right now. I hope we are not going to take her off track. We debated on this for so long but we trust our medical team and we decided to just look forward and not back once we made this decision. Yet... the night before a surgery or procedure is always hard. I tend to get jittery and I obsess about things that are not important. The list is long and I can laught at it... but I can't stop the madness. Luckily Brien expects this from me so he just leaves me to my devices and gets me ice cream. Not doubing your decision and looking forward (as opposed to using the rear view mirror) is much easier to say than do.
She is sleeping like an angel in bed and luckily she has no idea that tomorrow she will be poked, prodded, cut, measured, and tested in a way that could never account for who she is to us - a perfect, adorable angel. I think there should be a baby scale that measures the amount of smiles one baby can bring. There should be a ruler for the biggest hug and the best babble. These things are not recorded on her medical chart but these are the things that keep us going on the tough days.
Tonight during dinner we reminded Noah that Cecily would be going into the hospital for a few days. He asks questions but he simplifies it for his own understanding.
"Will this fix her tummy? When will she be back?" Then, in typical Noah fashion he tells her that it will be alright. Then the questions continue. "Who is going to be with me?" And "Where am I going?"
He wants to visit but we'll make a decision on that once we see how tomorrow goes. We don't want to remove him from the situation. We find the more inclusive we are with Noah the better he is about Cecily and the constant attention she requires. Yet exposing Noah to Cecily in a medical crib (that looks more like a cage) as she is hooked up to monitors, tubes and the like may be very scary for Noah. Plus, we don't want to get him sick. The hospital is full of germs and Noah seems to find them; he seeks them out.
We will be so happy when tomorrow is over. I never appreciated the gift of a healthy baby. I took Noah and his strength, health and energy for granted. I have such a new appreciation for life and for family, friends and the stuff that matters. Tomorrow is a big day. We have jitters. But we will make it through and we will reunite as a family again. We are lucky. This is what we will choose to remember tomorrow. Onwards and upwards!
We did it! We finally left the kids and had our first kid-free vacation since Noah was born. Did I worry about leaving the kids? Of course. But did I manage to enjoy myself with Brien and friends... oh yes I did! I didn't realize how much we needed this trip. A million thank yous to our friends for planning this adventure as I never would have done it. I believe I have convinced myself that I am the ONLY person who can care for Cecily... I am not an egomaniac... but I am very crazy when it comes to her care. I worry. I worry that she is getting enough stimulation. I worry that she is doing enough therapy - but not too much. (I don't want to turn into a therapy Mom). I worry that she will be upset if I'm not there to pick her up and respond to her every need. And then there is Noah. At almost 4 he still needs Mommy or Daddy to go to sleep. He still wakes up every night and he is very afraid of the dark. Would he be ok without us? Yes. He was fine and in fact he didn't seem to miss us. He would like us to go away again so Grammy and Grampy can take him to McDonalds. (hey a little bribery goes a long way...)
It was lovely to sleep through the night and not hear the beep, beep, beep of Cecily's feeding pump. It was lovely to shop in stores without kids and eat dinner at 9:30pm and go out drinking like we were in college again. We had no responsibilites. We lounged by the pool, ate delicious meals in kid-free restaurants and pretended that we were 21 as opposed to thirty-something. At moments on this trip I did feel old. We looked around at the just turned 21 crowd and remembered our pre-kid Vegas days... It was a fun time but life now is the best it has ever been. I wouldn't change anything. We didn't win big in Vegas but you can't lose coming home to two adorable kids that are ready to give you kisses and hugs. Plus, they think we're cool. I know this won't last so I'll soak it up for now...
Alas... this trip made me realize that the kids keep kicking, crying, laughing and growing whether I am there to witness every second or not... A big Thank you to Grammy and Granpa for enabling us to leave for a fun weekend in Vegas.
Onwards and upwards!
This week we celebrate 365 seizure free days for Cecily. To say our lives were changed dramatically a year ago is an understatement. My husband's Mom was losing her fight with cancer, Cecily's development had started to fumble and we found ourselves at Children's Hospital with a team of neurologists. They told us to sit down. They said the news was not good. Those few seconds were the l-o-n-g-e-s-t seconds of our lives.
They told us Cecily's tiny body jerks were not normal and that they were called infantile spasms. What? Ok. So how do we fix it? What does that mean? Is it common? How did she get it? Is she going to die? Is she going to have a shorter life? The questions raced. We felt desperate and hopeless.
"The onset of infantile spasms arrives typically within the first year of life, between 4-8 months."
Cecily was 7 months.
"The seizures primarily consist of a sudden bending forward of the body with stiffening of the arms and legs."
Yes, Cecily had started to do this.
"Spasms tend to occur upon awakening or after feeding, and often occur in clusters of up to 100 spasms at a time and sometimes babies have several hundred spasms per day."
The list went on. It included a prognosis, side effects to the meds that Cecily would need (and utilizes today), and other stuff we needed to know. But I don't remember the details. I was in a fog. Brien absorbed it while I just sat clutching Cecily and thanking God that she was alive and that we would leave the hospital with our baby.
We thanked God that we caught it early! And with the great care of her medical team led by her neurologist, Dr. John Crawford, Cecily is becoming a poster child for infantile spasms. I hope her story gives other families hope, too. We have been told her EEG's are remarkable. There is no sign of seizures and she is making forward strides without too much regression. 365 seizure free days is a reason to celebrate!
We know that Infantile spasms usually stop by age five. We also know that they may be replaced by other seizure types. We can fill up our heads with what if's and worry ourselves silly but we made a decision a year ago to stay positive. The stats and the research are just more noise. We'll read it for knowledge and to educate ourselves, but it is not a guidebook for Cecily or how to parent her best. A medical journal, research study, a Doctor or a text-book prognosis will not define who Cecily is, what she will achieve, or who she will be. Her life has already influenced the lives of so many. And we know that she will continue to do so with or without seizures.
When Cecily left the hospital one year ago this week we had to say goodbye to Brien's Mom, Judith. We immediately took Cecily over to hospice where she was resting. She moved from holding court with family and friends, laughing and sharing stories, to a quiet, peaceful place. She was slowing slipping away. She was at peace, or so we thought. She had made us promise to work-hard, to love each other and to be good to each other. She was always inspiring us to be better and do more.
It was late but I had been unable to visit Judy for almost 4 days. We worried that Judy would know something was wrong. Nothing slipped by this woman! We placed Cecily Judith (she is named after her) in her arms and she awoke. She started to shake. She started to breathe heavy. We had hidden Cecily's medical challenges from Judy during her battle. We wanted only positive energy around her to give her strength. She stroked Cecily and moaned with delight. It was as if she knew and she was relieved to be holding her grandbaby again. They rested together in the bed for awhile. We have a picture of this moment but it is too painful and private to share. It reminds us that life goes on and that life is what you make it. We celebrate this week and the life and legacy of Judy. Onwards and Upwards!