This is a big week for TEAM FROM HOPE TO JOY.
We are walking in two events that are very near and dear to our hearts!
This Sunday (4/27) is the March for Babies that raises money for the March of Dimes. We were asked to be the Westchester County Ambassadors and we were honored to accept! The March of Dimes helps moms have full-term pregnancies and they research the problems that threaten the health of babies. They continuously fund research to help prevent other babies from being born as premature as Joy was.
Walk with us if you can. The March for Babies begins at 10 am at Saxon Woods Pool in White Plains, NY. It should be a great day!
Next Sunday (5/4) we are participating in the “Go the Distance Walk” for Maria Fareri Children’s Hospital in Valhalla, NY. They do so many great things and they save the lives of countless children each year. Joy spent 121 days in their Level 4 NICU after her 23-week birth. Maria Fareri Children’s Hospital saved her life and took care of her until she was old enough to come home. I owe them everything! This walk begins at 9:30 am.
Our family appreciates each and every person who donated to either or both organizations in honor of Joy. We are also thankful to those who liked and shared our Facebook posts and those who retweeted our fundraising requests. Each like and share helps us get our message out to more people.
(I’m ready to walk! Are you?)
As of 11:16 pm tonight, we have raised $5280 for the March of Dimes. This is amazing!!! Our team goal was just $5000 and we still have two days to go! We are truly blessed to have so many generous people in our lives!
We also raised $1430 for Maria Fareri Children’s Hospital. We still have over a week to get this number up as well!
Here are the links to both team pages in case you would like to donate:
Thank you again for helping us spread awareness about premature births!
Two weeks to go before the March for Babies Walk!
We are the Westchester County Ambassadors for the 2014 March of Dimes and we are leading the March for Babies!
Come walk with us on Sunday 4/27 to help raise money and awareness for the prevention of premature births and birth defects. This is a March of Dimes event. The walk begins at 10:00 am at Saxon Woods Pool (1800 Mamaroneck Avenue in White Plains, NY)
Please consider donating even if you cannot attend the walk.
See the link below:
Thank you for you support!
This week was particularly rough! In fact, it was one of the most difficult weeks I have had this year. My youngest son and my preemie daughter had the flu.
This may not seem like a big deal to most of you. But for our family it was huge. Parents who have had children expected to die and that doctors told them would most likely die can understand what this feels like. Unfortunately there are many reasons a child can be close to death, and our reason was prematurity.
For two months before Joy was even born we were told she would most likely not survive my pregnancy or her expected early birth. Then, once she was born at 23 weeks, we were told for almost another two months that she could die due to any number of complications from her premature birth.
It is difficult to put into words what that feels like. I remember going through the motions of daily life for the sake of my other children, but there was never one moment free of fear and guilt during the 4 months that Joy was in the NICU.
One would think that I would be filled with relief when Joy was released from the hospital, but relief is only one feeling! As parents of micro preemies, we are warned of the dangers of any regular cold and what that can do to our babies. This fear is compounded by fears of the germs Joy’s siblings may bring home to her and what I have to do to protect her.
In Joy’s case, she made it 6 months before her first phenomena. We had been back to the ER for many reasons prior to this. Each time was due to a respiratory illness, but on Easter of 2013, Joy was gravely ill. She contracted both the human metopneumo virus and the rhinovirus and it was too much for her tiny scar tissue filled lungs to handle. Joy (and I at her side) spent two weeks in the hospital due to the phenomena this caused. It was touch and go for two of those nights and I was back to feeling like my daughter was going to die. Unfortunately, this was a familiar feeling of which I developed many coping skills. It was easy for me to function on the outside, but the inside was another issue.
(Joy during her hospital stay in March of 2013)
Joy has a condition called BPD which basically means her lungs are very weak and filled with scar tissue caused by the expansion and contraction of each breath that the ventilator had to do for her, for almost two months. Her lungs basically formed while constantly being forced to open and close and are now mostly scar tissue. Scar tissue does not have healthy alveoli (air sacs) and any respiratory illness will cause her lungs to fill with fluid that she cannot easily get rid of. Joy is on steroids through a nebulizer twice a day, every single day since she came home from the NICU 1.5 years ago, as a precaution to keep down the swelling of her lungs in preparation for her next cold. When she is sick, albuterol gets added to her routine, being administered every 3 hours.
Back to my point:
Joy has had a few colds since that hospital stay last year, but nothing causing an overnight stay at the hospital. One would think that I would relax at some point, but that simply does not happen. I am always waiting for the other shoe to drop! I know it sounds cliché, but that it s the best way I can describe it. When you are forced to prepare for your child to die on numerous occasions, for months straight, and then told that any small virus that would give any regular child a common cold can also kill your child, you don’t ever really relax.
I have been told that this is a form of post-traumatic stress syndrome. At first I thought everyone else was crazy for suggesting it, but now I believe it. This is a conversation for another post, but I will say that I am still afraid to relax and enjoy my daughter because I always fear that she will be taken away from me. Yes, this sounds like a terrible way to live, but it does not cast a shadow over each day, just the day’s filled with illness.
This past week was one of which I felt that sick feeling that the shoe was dropping!
One of Joy’s brothers was very sick with what seemed like a flu (and in fact was) and was just sleeping a lot due to his high fever and cough. This lasted about a week. By the time he began to recover, Joy began to get sick. At first she just had a high fever. Then came the runny nose and cough. Then came the rest! She began to cough to the point where she would gag and vomit anything in her stomach. She refused to eat or drink. Her fever was 103 to 104 and not coming down. The pediatrician on call swabbed her nose and suggested to decrease time between her nebulizer treatments and monitor her for respiratory distress and dehydration.
She was not getting better. There was one day where Joy would not wake up. She woke for a few minutes at a time but would not stay awake. Once again, I was scarred to death on the inside, but keeping it cool on the outside, so my boys did not get nervous.
It turns out that Joy had the Influenza B virus. And yes, she did get her flu shot. Joy ended up getting pneumonia as a result of the flu. She has been in the hospital since Tuesday and is not going home anytime soon. She is receiving antibiotics, steroids, is getting fluid through the IV and is back on oxygen because her little lungs cannot handle this respiratory illness.
(Joy in the ER on Tuesday)
I am feeling torn once again. My daughter needs me to be with her here in the hospital, yet my other children (particularly my newly 5 year old son) needs me at home. Someone always has to suffer, and it ends up being my boys. I hate this! Will she ever grow out of BPD and her lung issues? I hope so!
Instead of talking about what is going on with Joy (as if I had any time to talk!), I turn to writing. It relieves some of my stress and I hope it gives at least one other preemie mother or father out there a sense that they are not alone!
Someday I hope to get to the point that I am no longer waiting for that other “preemie” shoe to drop. I would love some advice on how to get there!
One of the most rewarding results of publishing my story has been the wonderful people I have met because of it. Leelee Klein and Gwen Noto of The Tiny Miracles Foundation, and Kasey Mathews, author of PREEMIE, are no exceptions!
The Tiny Miracles Foundation, Inc. is a not-for-profit organization dedicated to helping families with premature infants in the NICU in communities surrounding Fairfield County, Connecticut.
They know from personal experience that the premature birth of a child can be a shocking, isolating and frightening experience for many families. Although area hospitals are able to meet most premature infants’ medical needs, the emotional and other needs of the family during this fragile time often go largely unsupported. The Tiny Miracles Foundation seeks to fill this void by providing support, information, services and supplies to the families of premature infants regardless of race, religion or national origin, during and immediately following their hospital stay.
Through their programs, The Tiny Miracles Foundation strives to promote the best possible care for children born too early and those who love and care for them.
The Tiny Miracles Foundation is made up of parents of preemies from Fairfield County, Connecticut. They came together because they knew what it was like to fall through the looking glass and land in the Neonatal Intensive Care Unit.
I am happy to say that Leelee and Gwen, who run TTMF, are now friends of mine. They reached out to me after my book was published and wanted to know if I would like to get involved with them. I jumped at the chance because of the great work they do!
The Westport Arts Center in Westport, CT was gracious enough to allow The Tiny Miracles Foundation to use their beautiful gallery to host a fundraising event on Thursday March 6, 2014. The event was called “An Evening of Reflection and Discussion” and myself and Kasey Mathews were the keynote speakers. Fourteen years ago Kasey’s daughter Andie was born a micro preemie and she is doing wonderful today! In PREEMIE, Kasey tells a very honest story of her family’s NICU time and how they all made it through. I laughed and cried with Kaesy as I read her book and I recommend it to anyone who needs to be inspired.
It was a beautiful night! Kasey and I read sections of our books as guests listened intently. We were given an opportunity to speak about our own experiences and answer questions from the crowd. But, my favorite part was when the guests got to speak to us and share their own experiences with pregnancy, premature deliveries, the NICU and life with a preemie. It is always so moving for me to hear other stories of heartbreak and triumph through prematurity. Everyone has a story to tell and I am so glad that I got to hear so many of them that night!
(From the left: Me, Kasey Mathews, Leelee Klein and Gwen Noto)
The Tiny Miracles Foundation is such a wonderful organization that was created through experience and love and I hope some of you reading this will visit their site and see how you can also become involved.
Thank you Leelee and Gwen for such a beautiful evening! I look forward to the next time we can work together.
And I also want to thank those who spoke up and told their stories at the “Evening of Reflection and Discussion”. These conversations make us all feel more connected!
Hello friends of preemies! Recently, I have been asking a lot out of you and I recognize that. There are two events coming up that are VERY important to our family and one that is a great cause. All of these events support preemies in one way or another, and that is why I am involved in them. Please take a moment to read about each of them and see if you can give up some time to walk with us, or just donate some money to one of these great causes. The future babies of the world can use your help!
1. Thursday March 6, 2014
An Evening of Reflections and Discussion on Premature Babies from 7 to 9 pm at the Westport Arts Center in Westport, CT. This event raises money for The Tiny Miracles Foundation, which helps CT NICU families.
2. Sunday April 27, 2014
March for Babies by the March of Dimes kicks off a 10:00 am. This event has activities for the whole family and will be a lot of fun. The March of Dimes funds research that helps prevent premature births and birth defects.
3. Sunday May 4, 2014
Go the Distance Walk for Maria Fareri Children’s Hospital kicks off at 9:30 am. This event is also very family oriented and has many organized activities for children. This event is very dear to our hearts because Maria Fareri Children’s Hospital saved our daughter’s life and Joy spent 121 days there.
Thank you for your continued support!