This is the story of Tara. The wonderful little girl whose family won the Giving Back Session. This is one incredible girl and I asked her mom Cassie to tell their story the way it really happened. This way you can understand what a beautiful miracle little Tara really is to her family and all who have the pleasure of meeting her. I was so impressed with Tara and her bubbly little personality. She has such a strong beautiful spirit and light just shines through her. You cannot stop smiling when you are around her. A true testament to her family who obviously shower her with love and affection. I strongly believe that the amount of attention and love her family has devoted to Tara has helped heal her so much in her short life. I am so grateful I had the pleasure of meeting this family, knowing their story and giving them this session. I will remember it always and look forward to hearing the progress Tara will continue to make. She’s a fighter! I hope you too come to know and love Tara through this story…
Life never goes quite how you plan it….
After trying to start a family for over five years and less invasive fertility procedures, we decided to pursue IVF. I got pregnant on the first try, very pregnant, with triplets. Tara was our singleton with the “penthouse view”; she had identical twin brothers that perished at 13 weeks into my pregnancy. While they didn’t make it, she thrived. At 21 weeks, I had to have emergency gallbladder surgery. She came through the surgery fine and was moving and rolling before I was even fully awake. At our routine 26 week doctor appointment, I had an ultrasound and our world came crashing down around us. The look on the tech’s face is not one I will ever forget, fear. She left the room very quickly to get the doctor; I burst into tears and said to my husband that something is very wrong. The doctor came back and confirmed that there was indeed major problems and I was to go immediately upstairs to labor and delivery. I had a host of complications that were overcoming Tara’s life and she needed to be delivered. We were able to hold out for steroid shots that helped to mature my tiny baby’s lungs; the outcome could have been vastly different had she not gotten the benefit of those shots. We had a revolving door of specialists telling us that the likelihood of our little girl making it was slim and if she did, she would be severely disabled.
That was on September 29th, two days and a lot of tests later we had our little girl. Tara Grace came into this world on October 1, 2009 at 1:56 in the afternoon. She was not alive when they pulled her out, but after a lot of intervention they were able to get her back. She weighed a whopping 15 ounces and she measured 10 inches long. She was whisked away to the NICU, where she would stay for the foreseeable future.
Tara had a lot of ups and downs in those first few weeks. I didn’t get to hold her till she was about 4 weeks old. I would sit by her isolette day in and day out, thinking about what should have been, and what could have been. Those first few months for me were very hard. She was poked, prodded, and vulnerable; and I was not able to do anything about it. I was completely helpless to offer my baby any comfort. So day in and day out, I would stay at the hospital for about 10 hours a day.
After about 3 months, Tara had to transfer to a larger hospital because she needed eye surgery. That was also when they told me she would need a tracheostomy because she couldn’t come off her ventilator and would likely need long-term support; I was told all of this on Christmas Eve. To say we were completely devastated would be a massive understatement. But I did what I had to, and so my parents, my husband and I went to tour the two big children’s hospitals in this area. If my baby girl was going to have more to endure, I was going to be proactive in choosing the best place to have it all done. Ultimately, Tara was transferred to Children’s Medical Center Dallas NICU.
At this point she was a very sick little baby, near death on more occasions than I can remember. So for the next few months we bided our time, tried to keep her comfortable and alive, and get her well enough to undergo surgery for her tracheostomy and g-tube (a feeding tube surgically inserted into her stomach through her abdominal wall). Finally on March 1, 2010, Tara’s life changed forever….she got her identity. She went into surgery with her face covered in tape to hold her breathing tube in her mouth and throat, and came out with a tracheostomy. It was very hard on us seeing her for the first time after she came out of surgery. She got a bad blood infection after her surgery, where we almost lost her; but once she overcame that she moved pretty rapidly toward coming home.
She was transferred to Our Children’s House at Baylor, which is a pediatric rehabilitation hospital, where she stayed for 5 weeks while we learned the technicalities of taking our daughter home. She finally came home by ambulance on April 27, 2010 with a trach, ventilator, oxygen, and feeding pump. It was one of the most exciting days we had enjoyed! But with coming home began the new chapter.
Our home life became consumed with trying to find competent nurses to care for our daughter, minor medical emergencies, doctor visits, and various therapies. In between all of that, we tried to expose Tara to the world she had missed for the first 7 months of life in the hospital. We cautiously took her out into the world to experience life for the first time; she took it all in with excitement and wonder. I became so comfortable with all her “attachments” as I referred to them, that she was treated just like any other baby. I got more comments about how nice it was to see a family as involved as we were, because most of the time the child is shuttered away into their room and never taken out. Once she was home she progressed so quickly that it was shocking; and after 15 short months we were celebrating her decannulation. On June 7, 2011 she went to the hospital with a trach and the next day she left the hospital trach free and has never looked back!
I truly believe that Tara thrived because our family treated Tara no different from any other baby. Sure we were, and still are to an extent, a bit germaphobic; but that little girl is absolutely perfect in every way. She has surprised ever doctor and specialist that have ever come into contact with her. She is ridiculously smart, talkative, and the sweetest, most loving toddler you’ve ever seen.
We still are struggling with feeding issues and she is slowly learning to eat. That has been a long road and she will continue to have therapy for that. Right now she takes all her nutrition via her g-tube and will only take tastes by mouth. She is scheduled to enter an inpatient feeding program in October, which is supposed to help her learn to eat and overcome the aversions she has.
This has certainly been a bumpy ride, but it’s been our “normal”. Would we have fared as well had this not been our first and only child? We’ll never know, but I do know that I wouldn’t change anything. It had made me a stronger woman and a better mother than I ever thought imaginable. I look at her and think “How’d I get so lucky…to have this perfect miracle to call my daughter…”
These are a few of my favorite quotes that I’ve enjoyed over the past few years. They really hit home for me, as I can relate to each of them on such a personal level.
“We must be willing to let go of the life we have planned, so as to have the life that is waiting for us”
“From the outside looking in you can never understand. From the inside looking out you can never explain.”
“The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen.”
— Elisabeth Kübler-Ross
Special Thanks to:
My amazing husband and Tara’s daddy, Joe. He has always been there and will always be there. We went through too many dark days to count and things that would have torn many marriages apart. We came through on the other side stronger for it.
Dr. Andrew Gelfand, pulmonologist. You’ve helped us through more rough patches than I care to remember. Thank you for taking care of Tara since day one and treating her with love and compassion. That is what makes you an exceptional doctor.
The doctors, nurses, and respiratory therapists of Baylor Grapevine NICU.
The doctors, nurses, and respiratory therapists of Children’s Medical Center Dallas NICU.
The doctors, nurses, and respiratory therapists of Our Children’s House at Baylor Dallas. Thank you for educating me and giving me the tools needed to bring Tara home.
Our two amazing home health nurses, Cheryl Locke and Florence Angu. You’ve allowed me the rest I needed to get through another day.
All of our friends and family, you know who you are, who have offered love and support from near and far. Go Team Tara!
And most importantly, my family. My parents, Steven and Christine, were there through all the good times and bad. My mom was my trusty sidekick and on some days my voice and backbone when I was too weak to have one. My dad was there with a shoulder to cry on and the voice of reason. Without them, I’m not sure we would have made that long journey still sane. My brother and sister-in-law, Chad and Emilie, for always brightening our days with their smiles and playful attitudes for Tara. And last, but not least, my in-laws, Joe and Sydney who always offered reassurance and prayers.