BENEFITING: Fetal Health Foundation
Six years ago, my husband, Randy, and I were thrilled to learn we were pregnant with twins. But that joy turned to fear when I went into labor at 20 weeks and found out the boys had twin-to-twin transfusion syndrome (TTTS); one was not getting enough blood and the other was getting too much. We were told by the specialist there was nothing that could be done to save them; if we tried, we’d only cause irreparable brain damage.
Alone and scared in the hospital, we started researching TTTS, found the Fetal Hope Foundation, and with their help, called experts all over the country. Thankfully, they felt they could not only save them, but that there was a chance they could be healthy. We transferred to Presbyterian/St. Luke’s hospital, and TTTS expert Dr. Julian De Lia patiently walked us through what needed to be done – all over the phone from Wisconsin. After surgery and 6 weeks of bedrest, I started getting edema, putting on 2-5 lbs/day of water weight. Two weeks later, at 28 weeks (and weighing in at 230 lbs!), the fluid filled my lungs, and we needed to get the boys out. I gave birth to two tiny boys: 1 lb 13 oz and 2 lb 11 oz.
Conor and Liam were in the NICU for 100 days before coming home on oxygen. Their prematurity led to the development of bronchopulmonary dysplasia (BPD) - they struggled to breathe. They spent 18 months on oxygen and in isolation, had several surgeries, were hospitalized for every illness, and suffered collapsed lungs. At 3.5, they were still turning blue, and we spent the summer in the hospital running test after test. It seemed any stress – running, high altitude, illness – was just too much. The doctors feared their heart was starting to fail – that they had developed pulmonary hypertension, which seemed to many children to be a death sentence.
My husband and I decided that moving to lower elevation could help. We began looking for new jobs, and approached our companies for letters of recommendation. My company responded by offering to transfer me to Washington, D.C. for a temporary assignment, and Randy’s company let him work from home for the year we were away (the first person in his company to be allowed to work from home!).
That was 2 years ago, and our prayers have been answered. At lower altitude with no stress, the kids’ lungs grew bigger and hearts grew stronger. We are now back in Colorado, the kids are doing amazingly well, and have just started kindergarten this fall.
We are delighted now to be home – really home – and enjoying our healthy family – and to have the time and energy to devote to ourselves and to others.
During these past 5 years, we were incredibly blessed to have felt the outpouring of love from so many friends and family who supported us through bedrest, hospital stays, and everyday life – they brought meals, pet sat, tirelessly prayed, and have shown us so much love and support along the way.
We thank the Fetal Hope Foundation for being there in our darkest hour to give us hope that anything is possible, and to give us the help we needed to find the right doctors.
We thank the patient doctors at PSL, who worked with us to research the best solutions for our kids – day after day.
We thank Dr. Livia Veress, their pediatric pulmonologist, who treated them like her own, answering countless midnight texts and phone calls, and talking us through our panic and fears.
We thank all the staff at The Children’s Hospital of Colorado, not only for their medical miracles, but for the warm and caring way they treat patients AND their families.
We thank our wonderfully supportive employers – allowing us to miss so much work, and yet still be willing not only to keep us employed, but to go out of their way to transfer us across the country to help our kids.
We thank our families for their support, and especially my mother, for giving up her sweet life in Wisconsin to fly across the country countless times to wait on me while on bedrest, to help when the children came home from the hospital, to be there in emergencies, to sit with me to pray in the PICU, to drive us across the country, to make us a million meals, and for always being our rock - even when we were losing it.
We thank all of our friends and family who have provided advice and words of encouragement via Facebook and email ... and all the prayer warriors who have prayed so fervently for our health and strength.
And we thank Dr. De Lia, who still keeps in touch and warmly calls the boys to wish them a happy birthday every year – though we never paid him a cent.
We are indebted to so many. You are all such warm examples of love. Thank you all for your care and support.
We are now working to pay it forward - by collecting travel toiletries for parents of hospitalized kids (we have been the recipient of such care packages and they have brought me to tears), bringing meals to those in our neighborhood in need, and by working to raise money for the Fetal Hope Foundation, whose website and contacts helped us reach out to the right doctors around the country and save our children six years ago.
I am competing in my first half Ironman on September 20, 2015, and am raising money while I race for the Fetal Health Foundation - to be able to provide funding to help other families with fetal syndromes connect with the doctors they need and to give them hope. A half Ironman triathlon consists of a 1.2-mile swim, a 56-mile bike ride, and a 13.1-mile run, for a total of 70.3 miles. Please consider supporting me in the swim ($12), the bike ($56), the run ($13.10), or the whole race ($70.30) – or feel free to make a donation in any amount you choose. Or, just drop me a message of encouragement during the next few months of training and before the big day. Thank you for your support.
Love, Kate, Randy, Conor and Liam
The Fetal Health Foundation provides support and information, funds research, increases awareness and acts as an outlet for leading medical information pertaining to fetal syndromes. They arm families and healthcare providers with information they need to save babies’ lives.