“What his little life has taught us so far”
Gabriel Aubele, Trisomy 18, 9/19/2011, New Kensington, PA (see story updates, below!)
Hello, just to tell you a little about our story. We found out prenataly that our son Gabriel has Trisomy 18 and Truncus Arteriosus. We had a very trying pregnancy, fighting and battling with some Dr’s that we would keep Gabriel and not abort. We demanded and echocardiogram when he was born and he now had a PDA, PFO, Large VSD, and Displastic valves. He spent 8 days in the N.I.C.U and then 3 weeks in a Children’s home, to teach us how to take care of him at home on oxygen. We were sent home with Gabriel on 1/64 of a liter of O2. We have a follow up appointment with the cardiology team the end of December. However, on Thanksgiving morning, Gabe was in heart failure. We rushed him to the hospital, where we fight for a pulmonary band to help save his life. He will have surgery on 12/2/2011. We have prayed for Gabe’s arrival and believed that God would honor our faith to him. Our dreams came true and now we pray that God would be with us and the Dr’s performing the surgery. Gabe’s life has brought our family even closer to God. What his little life has taught us thus far. What an amazing little fighter he is. He really has a will to live. We pray that through this pregnancy and birth, the eyes of some dr’s would be open and that they would see these little babies differently. They told us from the beginning that Gabe was going to die. None of them expected him to be here this long. We said ALL along, “Let’s let Gabe show us what he will do.” That’s all we wanted all along. Don’t shut the door on on his life, God chooses that, not us.
I can be reached at email@example.com if you would like to talk about our precious babies.
Update 6-29-2012: It’s been awhile since I had the chance to update. Gabriel is now 9 months old. He has had multiple surgeries: heart surgery to place bands on his pulmonary arteries. They would not repair the VSD then because he was too small. He was intubated for awhile and failed extubation several times. He needed to be emergency trach’d. He was put on a ventilator just to help his lungs get rid of the CO2. He had a nissan/fundo with a g-tube placement. He finally came home Feb. 8, 2012. He has been home ever since and growing strong. He was 5 lbs at birth and is now almost 15 lbs. Way to go Gabe!!! We are so very blessed to have him in our life. He knows nothing only to be strong and a true fighter. He knows what true love is. We are sprinting him off of the ventilator and he is doing great. We go out all the time together as a family. We do not live in some bubble, we will enjoy life to the fullest and so will Gabe. We believe that every child deserves intervention, a chance to survive and live. So why deny this to our child. NO ONE knows how long our life will be. There is no guarantee for anyone, not even the healthiest. We will continue to live and believe that God is in control. We will live everyday loving the child that has surprised many, praying that their eyes would be opened and their hearts believing.
I will say that life hasn’t been easy, that’s for sure. We have learned to take care of his needs. He is dependent on us, he trusts us. We will not fail him. Days are getting brighter, while Gabe gets stronger. We love you Mr. Gabe.
Update 5-17-2013: It has been almost a year since I have updated. Gabriel has come along way and growing strong. He is amazing little guy. He gets p.t and o.t in the home weekly as well as mom, dad and nurses working with him. He is 19 months old now and weighs about 21 lbs, wow, how he has beat the term ‘incompatible with life’. We live each day as normal as can be. Gabe has only had 1 hospital stay in the last year and it was for and infection of the trachea. We recently had a visit with cardiology and for the first time they have admitted that gabe has beaten the odds and he will get a conference with the team of doctors to consider full repair of his VSD. Very scary thought for a parent to have to think about a serious surgery for their child. BUT we have left Gabriel’s life in GOD’s hands because he is the creator and he has plans for him. I will pray for God’s guidance in the decision that we should make for him. Like I said before, Gabe has been a true fighter, in everything he does. He loves life and is such a pleasant, content baby. He never complains. His brothers love and adore him so much. My middle child Brayden, is so tender and loving with him. In the mornings before school he blows Gabe a kiss when he is in his crib and if he is running late, he tells me to make sure I tell Gabe that he loves hi. When he comes home he asks how gGbe’s day was. Gabe has not only taught us as parents but he has shown our other children how to have compassion and understanding. We are hopeful for gabe’s future and the possibility of a full repair of his heart. Summer is approaching and we look forward to taking Gabriel to as many places as we can. We protect him when he needs it and give him freedom when we can because everyday is a miracle for our little sweet Gabriel.
Update 11/15/2013: Gabriel is doing fantastic. We recently visited pulminology in Oct. 2013 and we increased Gabriel’s time off the ventilator to ALL waking hours. It took me (mom) to push hard with pulminology about increasing his sprints longer because he is doing so well. The pulminologist is very reserved when it comes to increase because she wants to make sure his CO2 levels are in normal range. So she went from allowing total of 6 1/2 hrs a day to all day because his CO2 levels were great. What a little miracle he is. We will do this for awhile, as long as he tolerates the increase. We will then work on nap time, increasing time off the ventilator until he is off completely for naps. He will then get a sleep study done to determine when and if we can sprint while he is sleeping at night. I have felt for awhile that Gabriel would come off the vent ONLY because after Gabe was born he came home only requiring a nasal cannula. He did not require support from the ventilator until AFTER heart surgery. So I am positive and looking forward to the day that Gabe will be free.
Also we visited with cardiology in Sept and he had a follow up echo done to see what the pulmonary band is still doing and if we need to consider fixing his large VSD (hole in the heart). She stated the results still look great, the band is keeping the overflow to his lungs under control. She said we should not put him through a surgery at this time if he does not need it. So there is no immediate future plans on when Gabe will require the VSD to be prepared.
I did recently run into Gabe’s cardiotheracic surgeon and reminded him that he did Gabe’s surgery over 2 yrs ago and how well he is doing. He had the opportunity to meet Gabe again and see how well he is doing. How many surgeons get that chance to meet the child later in life and experience and and can see that what they did to help a child was well worth it, despite the negativity thought about children with a chromosome disorder. I am planning on sending to the hospital that Gabe was born an update and pics as to how well Gabe is doing because SOME of the physicians there gave us NO HOPE. They need to see how well he is doing and to NEVER write off any child because of what statistic says. These doctors need to know that they are learning new things everyday about how to care for people. Don’t take what ‘used to be’ as current ways to provide care.
Our family has been through some rough times, but things are getting better and we are doing more and more things together outside our home. We did a lot this summer as a family. Gabe has been to the beach, lounged in a pool, rode the merry go round, slid down a slide, jumped with mom on the trampoline, went to the zoo, went fishing, rode on a golf cart, soaked his feet in hot tub, rode on a swing (with mom), went biking at ohiopyle, pa, went to the movie, rode on a hayride, went to a demolition derby and went to Elk county and saw a heard of elk. So to say the least, our family has not lived in a box, we have lived life, for us and for Gabe. Why should we miss out. Don’t get me wrong, we have been very cautious and careful with everything we have done. In the last year, Gabe has only had 1 six day inpatient for a respiratory infection. So if anyone reads this and if there is just 1 person or family inspired by Gabe of how life can be lived despite adversity and negativity by the medical field, then I have done the works of God. He wants us to speak his name in love. He is in control of life, he created each of us for his purpose. I’m certainly not saying that just because I believe in God is the only reason that my child is still alive. I’m saying that because of WHAT I believe, that I would not abort him and I would allow Gabe to live JUST like anyone else has the right to. We will all die some day and when it is Gabe’s time to go, we will know that we have lived life to the fullest and did not let a diagnosis rule our lives. God bless.