My family and I were invited to a fundraiser held by the Big Hearts Little Hearts Loma Linda Desert Guild. The fundraising event was a cooking demonstration held at the very exclusive Hideaway Club.
We arrived at the gate and were immediately treated like rockstars. It was kind of neat. All 6 of our kids were with my husband and I. Driving up to valet was kind of funny because our big ol bus gets emptied like a clown car. The valet guy kind of chuckled. I wasn’t embarrassed but I still felt the need to apologize that it was going to take a minute for our car to get emptied out of kids.
We walked down the long hallway that was lined with waterfalls and beautiful landscape. We walked through the lounge area that looked more like a gentlemen’s bar. And then onto the patio that had the most amazing view of the PGA West greens. The view was stunning.
We were introduced to some amazing women that are members of the Desert Guild. We met the Guild President, the MC and anchor for our local news channel, the Guild’s event planner, their children’s hospital coordinator and many of their Foundation staff, and last but not least, the neonatologist that helped make the most important decision of our lives… the doctor that said YES to prenatal intervention.
He was the one that I wanted to speak with the most. My husband had met him at a previous fundraising event. It was neat to hear what he had to say. Amazing to hear that his vote was the deciding factor and hearing how he made that decision. (Iwill post about that meeting next post) But to sit and listen to him… thanking God with each word he spoke because if it weren’t for the doctors like him, our twins would not be here right now.
I spoke after the doctor. I was a little nervous. I had a speech prepared because if I didn’t I would have rambled on and on about who knows what. SO I had to follow my written speech. lol.
After I spoke, we took photos for the newspaper and the hospital and the Guild. We mingled amongst some amazing people. Many people who wanted to also get involved in my non-profit and help and donate. It was such a great experience.
I feel like I have to get used to going to functions like these. I was also invited to another function in which I get to get a free full makeover. Yay me!! I am really excited about that. From being a mom that wears black yoga pants and superhero t-shirts … I can not wait to get all dolled up to look fabulous.
It is only January. We have 11 more months of what will be an amazing year!!
***here is my speech I made. I added a few words here and there tho… lol ***
Our family lived and breathed Hope from the moment we stepped foot into Loma Linda University Children’s Hospital.
At 17 weeks, our twin pregnancy became a high risk and I was referred to Loma Linda’s Maternal Fetal Medicine due to Matthew having issues with his bladder and kidneys. By 23 weeks, he had little to no amniotic fluid. Our sons prognosis looked very bleek. And the fear of intervention to save him was a greater risk to his twin sister, Callia. We put all of our Faith in God knowing that He would guide our doctors to everything in their power to save our twins lives. We hoped that if there was any kind of chance, they would take it…. Against all odds… hold on to that small positive percentage and save our babies lives.
And they did. After what I was described as a “fight for the babies” meeting, our doctors went forward with doing whatever possible for our twins.
And after two surgeries in utero, including shunt placement, amnio-infusions and the twins SHARING an amniotic sac… they were miraculously born at 31 weeks at Loma Linda.
Callia needed a little extra time to breathe and grow. And after 9 weeks, our princess was discharged from the NICU with no other complications.
Matthew, however, was born with several problems, including pulmonary hypertension, collapsed lungs, brain bleeds and the expected, end stage renal disease.
Our time in the NICU was an incredible experience. We had several weeks and months of ups and downs, but Matthew proved to be a fighter. By the time he was 4 months old, he had already undergone his 9th surgery. And after 5 months of being born and raised at Loma Linda, he was discharged from the NICU.
We later learned that much of the life-saving equipment that Matthew needed during his NICU stay, were purchased with funds raised by the Desert Guild. And it wasn’t until the last few nights of Matthew’s NICU stay that I learned of what the Desert Guild was. It was a time I was finally able to breathe in our hospital experience and I saw that many of the family rooms and pharmacy were funded by the Desert Guild. An organization based out of the Coachella Valley that helps families who are treated here in Loma Linda. The Desert Guild also provides teddy bears for the children who are being treated at the hospital. Matthew received one during dialysis a few months ago and still carries it with him each session.
To this day, Matthew is still being raised at Loma Linda University Children’s hospital. The doctors, nurses and staff have all grown to become family. Loma Linda is literally our home away from home. We are at the hospital for dialysis 4 times a week and Matthew is doing great. He is currently growing and thriving and waiting to get big enough to make the magical list for transplant.
Our family is so grateful for the Desert Guild and all that they do for the families of the Coachella Valley. We take such great comfort in knowing our babies and our family are being supported by such a wonderful organization. We are so blessed to be able to thank all of you here today in person. Because of you, we received the support we needed for our family to be whole.
I wanted to say a special thank you to Terry Seigel… your commitment to advocating and supporting the children and families of the Coachella Valley has made such a great impact on so many. Our children and our family will be forever grateful to you and all of the volunteers that put so much time and effort in creating a peaceful and joyful atmosphere at the hospital. To see a smile on my sons face as he received a superhero teddy bear during treatment was priceless.
**and here is where I added and rambled some more… lol.