Birthdays in Billings

We had a great week long visit in Billings, Montana for Scott & Anna's birthdays. So out of courtesy for others privacy, since our blog is public, we typically try to not post pictures of anyone other than our family.

Hanna loved riding Mooders everyday and playing in the sandbox best. We loved Julia and Austin's babysitting/playing and the cool weather and great company best.

We had such a great time with all of the Montana Hannas and even got to visit with the Rexburg Williams and go out to the Jordan's ranch.

Now that Hayden is 6 months old, he has also visited 6 states in his short little life.

6 months old

Hayden is now 6 months old and I can't believe it. His smile melts my heart. He is the sweetest baby. Since we have taken a break from the medical community on our vacations, we have been able to relax and just have fun. My vigilant eye looking for things that might be wrong has taken a break. Now that we are back to the regular check ups, there are many wonderful things going right, but also a few tough ones that keep me up at night.

At clinic, Hayden was found to have great weight gain, an MRI of a working shunt and an ultrasound to find some fluid built up in his kidney. We are also treating him for a UTI at the current moment. The urologist's office tried to test him with an analysis of his strength of stream to see if we need to start cathing him again. During this test they couldn't pass the catheter after trying for a very long time. Now he has been swollen for days and are waiting to see where we go from here and have him rechecked after the round of antibiotics.

An optimist would hope that his stream is well and that it doesn't matter if a cath won't pass, because he won't ever need one. The pessimist/realist might think that there is an obstruction, or narrowing of the opening to the bladder and another surgery might be required and possible cathing again to reduce further UTIs.

At his Pediatrician's office, his weight was in the 50% at 17.6lbs and height in the 75% at 27 inches while his head is so small it didn't make the charts. This is something we need to follow up with at next clinic. He got his vaccinations and the doctor recommended we see an opthomologist for his eye (translation= another possible surgery).

During his physical therapy sessions, the PT was concerned about his "low tone". This is not new, but he is lagging significantly in a few areas ie. hands are still in fists, doesn't play with toys, doesn't sit unsupported and falls with rounded back, not rolling over, not pushing up with arms on tummy and head control isn't where she thinks it should be. She recommended a neurologist apmt.

While we are blessed to have great health care and insurance, the co-pays are really adding up. I don't know how others do it with less than we have been blessed with.

Here is a beautiful picture of our little hero and his aunt Melyssa. Please keep him in your prayers. They work.

Happy Hayden's SB Clinic

Hayden had a very very long SB clinic today. We left home at 6am and left clinic at 1pm. He had an MRI and an ultrasound. The MRI was great and again no news is good news. The ultrasound of the kidneys showed he had some fuid in his left kidney. The doctor said his didn't see reflux or UTI, but we should watch it to see if in the future we have to start cathing again. Only 30% of SB people don't have to cath. We hope Hayden makes that percentage, but the more important thing is to keep his kidneys healthy. We will keep watching.

Hanna was a trooper big sister as always watching cartoons and keeping busy with snacks and playing. When we were out, Hanna and I ate lunch in the cafeteria of the hospital and found our Seton photo shoot poster up for all to see. All the staff thinks Hayden is famous. We have to agree he is pretty special!

Ruidoso, NM Family Reunion

We feel blessed that we were able to drive to New Mexico for a wonderful family get together in the mountains and take a break from the heat. We are posting a few of the pictures of our wonderful family time there.

Hayden's 5 months, Great Grandma Spencer, Denver Antiques Roadshow

Hayden is now 5 months old and weighed in just over a whopping 17lbs. That is huge for the Trigg family. Hanna was only 18lbs at her first birthday. Great Grandma Spencer came from Colorado to visit for the first time. She was a great baby holder having had 6 babies of her own. Hayden loved falling asleep in her arms for hours. I flew back to CO with Grandma to attend the Antiques Roadshow and visit friends. I am no richer for my antiques, but feel richly blessed with my family and friends. Scott took excellent care of both the kiddos while I was gone having a great time.Hanna has recently become camera shy so getting pictures of her is harder and harder.

Hayden's first trip to Cali

We had a great time in California. We got to go to the LA temple for a date, to the San Diego Wild Animal Park, to the beach, and toured 2nd Street on Belmont Shore. While Scott and my mom were working, Hayden, Hanna and I were playing at the beach. Hayden loved taking naps there and Hanna couldn't get enough of the mud. It was a great break from the heat of Texas.

Soul Mates

So when I was thinking about what to title this blog, I thought of all of the other Spina Bifida parents that I have been learning from. We are a sort of Soul Mate. Each mother that I have connected with over the phone long distances or through Spina Bifida Clinic share our deep concern and love for our children. I know that most people love their children, but the emotions that we parents go through seem to connect us on such a deep level.
Through my blog, I recently got an e-mail from Shelly (http://kendallandshellyburr.blogspot.com/) in Houston. She found our blog from searching the internet on Spina Bifida.

By making our blog public it was our hope and intention that we could be a resource and a personal connection to someone else as the Etchells (http://theetchellsfamily.blogspot.com/) family has been to us along with the many other families on the SB links on the side of the blog.

Shelly had just learned of her daughter’s diagnosis and all the scary things that go along with it. I called her and I felt such a connection with her and the whirlwind of things that she and her family were going to be going through.

Today I learned that she is going to SF for the MOMs study (in utero surgery) this Sunday (http://fetus.ucsfmedicalcenter.org/spina_bifida/). If they decide to go through with it, they could have surgery this Thursday. The preparation that they are having to make for the possibility that Shelly may not be with her kids for the following 3 months after the surgery is a BIG step in its self.

This brought back so many emotions for me. We documented our few extraordinary days while we were in SF for the MOMs study in October and November. The decision to be a part of a national study on the effects and benefits of a risky in utero fetal surgery at 25 weeks is such a enormous decision. We fasted and prayed and got as much information as was possible through a litany of exams and meetings with Doctors in many specialty areas. Ultimately we were disqualified which was an answer to our fasting and prayers as neither of us could totally come to an agreed upon decision.

The in utero surgery is very risky but it is thought that it may 1) reduce the chances of needing a shunt in the brain and 2) protect nerve endings on the spine from further damage.

In addition. I am posting this short story and photo of an operation done at Vanderbilt.
The picture is that of a 21-week-old unborn baby named Samuel Alexander Armas, who is being operated on by surgeon named Joseph Bruner.The baby was diagnosed with spina bifida and would not survive if removed from his mother's womb. Little Samuel's mother, Julie Armas, is an obstetrics nurse in Atlanta . She knew of Dr. Bruner's remarkable surgical procedure. Practicing at Vanderbilt Univ Med Ctr in Nashville , he performs these special operations while the baby is still in the womb.During the procedure, the doctor removes the uterus via C-section and makes a small incision to operate on the baby. As Dr. Bruner completed the surgery on Samuel, the little guy reached his tiny, but fully developedhand through the incision and firmly grasped the surgeon's finger. Dr Bruner was reported as saying that when his finger was grasped, it was the most emotional moment of his life, and that for an instant during the procedure he was just frozen, totally immobile. The photograph captures this amazing event with perfect clarity. The editors titled the picture, 'Hand of Hope.' The text explaining the picture begins, 'The tiny hand of 21-week-old fetus Samuel Alexander Armas emerges from the mother's uterus to grasp the finger of Dr. Joseph Bruner as if thanking the doctor for the gift of life.' Little Samuel's mother said they 'wept for days' when they saw the picture. She said, 'The photo reminds us pregnancy isn't about disability or an illness, it's about a little person.' Now see the actual picture - and it is awesome... incredible... and hey, pass it on. The world needs to see this one! Don't tell me our God isn't an awesome God!!!