Thursday, January 30, 2014

4 years since I held you....

       4 years already? 4 years ago your dad and I made the hardest decision of our lives to let you go. So much has changed in 4 years.  Your brothers continue to grow bigger everyday. They are no longer babies they are getting big and tall. They both still get lots of therapies and go to a special needs school during the week. Your baby sister is going to be 2 in a few months. She is fondly called Godzilla baby. She is as cute as a button but can beat Godzilla himself in the destruction department. Your big sister will be 7 this year she is in 1st grade and is just a great big sister. She talks about you and tells me she misses you. She has a toy that was yours in the hospital and brings it to me every now and then and tells me what a good job she is doing taking care of it for you. Can you believe you would have been 5 years old in July and starting kindergarten? Another 1st that will be hard without you, but your memory will be with me that day and always in my heart. Even though you are gone I continue to love you more everyday just as if you were here like your brothers and sisters.

 Today is special. I chose not to use this day as a day of sorrow and pity for myself. I never know year to year rather I will shed tears or not, emotions are so unpredictable. Rather I wake up sad or not, I chose to use this day to bless others as you blessed my life just  purely by your existence. Living through your birth and death made me a better person.  I chose not to take this anniversary as day to dwell on the "what should have been" and "what could have been" scenarios. Today your dad and I celebrate you life. I am celebrating the 6 1/2 months God gave me the privilege of seeing your face, holding your tiny hands, and holding you close to my heart. I celebrate every tear, every smile, every hug, every laugh, every victory, and even every defeat we had during those short months you were with us because each detail was part of your journey. Throughout the year I worry I am forgetting the details of your life and this day and the days before always bring everything flooding back to me like it was yesterday. Yes, there is still a lot of pain in remembering having to say Goodbye, but it also warms my heart remembering every detail of you existence and realizing how great of an impact you continue to have on my life everyday even when I do not realize it. I live not only for my children on earth, but for my baby in heaven.

Last year I had the idea of giving back to another mother in need as a way of honoring your memory and being able to bless another family. I was able to do this by donating to a local non profit called Oh My Baby. They deliver bags of baby items to the social worker who works in Mother/Baby at the local hospital. The bags contain items for a new mom to use to get her through the 1st 2 weeks of their babies lives.  The social worker passes out the bags to mothers who she determines need them most. This year I decided to ask my friends to help me out. I set a goal of delivering at least 4 completed bags so we could bless 4 babies. 1 for every year you have been in Heaven. I am happy to say we will be meeting the goal and today I will be delivering 4 completed bags to the founder of Oh my Baby with a few extra items to go toward a 5th bag! This is really amazing to me since I got a late start and my friends gathered these items up with less than 2 weeks notice. Thank you to my very generous friends who helped me reach this goal.

I promise that I will always speak of you and tell your story. I will openly talk about yours and your brothers' journey through the NICU to every parent facing the same NICU journey willing to listen. I want other parents to be educated about complications of prematurity and the deadly effects of RSV especially on premature babies. I want mothers carrying identical babies and multiples in general to be aware of what Twin to Twin Transfusion just in case their babies are unfortunate enough to develop this condition. I want to tell parents to open there eyes and look past the "it will never happen to me" denial, believe me this crossed my mind to often, and speak up when they see that nurse or doctor not wash their hands BEFORE they touch a baby. Be the parent to call the person out with the runny nose taking care of your baby. BE THERE as much as you physically can. Insist that stethoscopes and other equipment are not shared and each child has their own. Always have a barrier between the baby and the caregivers cloths. (except kangaroo care) It might sound crazy, but it doesn't take much to flip a premature babies health upside down. A lot of this is standard in many NICUs but unfortunately most of this was not done where Logan and his brothers were outside of basic standard precautions. Logan got RSV while he was still in the NICU inside an isolet. My babies suffered Twin to Twin transfusion even when I had the gut feeling they had it as early as 12 weeks and I was told they did not. My babies were not monitor as closely as I feel they should have been. I have been through a lot of "what ifs" over the past 4 1/2 years and I do believe that if different decisions were made outcomes could have been different. What if I seen as TTTS specialist and had laser surgery and I lost both boys or deliver them even earlier than 28 weeks? What if it would have been a complete success and I carried until closer to full term and I had 3 healthy babies? What if I chose a different hospital? Would Jacob still have cerebral palsy? Would Logan still be alive? Would my boys have ever contracted RSV if I would have chose Tampa vs. Orlando? What if I went with my gut instinct at 12-13 weeks when I felt the high risk doctor was wrong? What if I asked more questions and didn't trust 1 doctor so much? What if I would have got a 2nd option? The list can go on and on but we are past this stage. Well I am. Jack still holds a lot of anger and blame at the hospital. We have already lived through this storm and  I chose to keep on living and not dwell in the sorrows of the past and only reflect on the love I have for all 5 of my children. Holding on to anger and bitterness can not bring him back or change anything that has happened 4 years later so I have no reason to be angry. Not that I don't have the random pity party every now and then though. Pity parties keep his memory fresh and close to my heart. 

Today we  will visit your grave, we will deliver the bags we collected in your memory, you dad and I will spend the entire day together, tonight we will eat somewhere special and we will think of you. I love you my angel boy. With faith I know I will see you again one day.

07/18/09 The day you were born

Christmas day 12/25/2009