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!!!

Celebrating Independence Day

We have been having a really fun weekend. I would love to post all of our pictures, but since I do not have the permission to post everyone out on the internet, I will have to condense it to my family and they can't complain. I have also made a Kodak gallery of the many pictures that are not included if you would like me to send them to you.

We have a new family in church that moved from Dallas with quadruplet babies Hayden's age, and an older daughter Hanna's age. They celebrated their daughter's second birthday with a blow up waterslide, fancy cake & pizza, and great take home treats. All of the quadruplets family was in town for their special baby blessings at church today.

After the birthday party we went home for a nap and then onto a 4th of July celebration to watch fireworks from the Lakeway park. Hanna got to swim two times in one day and eat cake twice. She loves Independence Day! She was the happiest girl ever, little miss independent! She even got to stay up 2 hours past bedtime. Hayden appears to be recovering well from his surgeries. He will have a check up later this month.

Hayden's Surgery

Last Friday, Hayden went in bright and early at 6am for surgery. The night before, to help ease my worries, I went out with a few of my June birthday girlfriends to a Ladies of the 80's sing-a-long that was a blast and got me home really late.

The children's surgery center had told me that Hayden wouldn’t be allowed to eat after 2am. This is so that he wouldn't get sick from the anesthesia. I knew I wouldn't be able to sleep, so I stayed up to feed Hayden an early feeding that he isn’t used to and it worked like a charm. He was just fine skipping his morning meal. He slept for the hour drive to the children’s surgery center and was all smiles when I had to hand him over in tears to his nurse.

Even with the knowledge that the surgery was best for him and my faith that all would be well, nothing could stop my tears from flowing knowing that my little baby had to cut open once again and recover from being stitched up.

Hayden had hernia surgery, circumcision, a bladder scope and another corrective surgery that went along with his circumcision that we weren't anticipating. Fortunately after all the doctor’s hard work for the 2 hour procedure and the recovery from anesthesia, Hayden was on his way home around noon. We both ate lunch and slept the rest of the day.

Thank you to those of you who prayed for Hayden. We took him to church today to thank and worship God for his goodness to us. Hayden was happy to see everyone and has been handling his recovery pain amazingly.All along we have been blessed by the good care that Hayden is receiving.

In the world of Spina Bifida, one of the most important specialty doctors is a urologist. The urologist helps with the day to day bladder and bowel issues that many SB people deal with. Not only are we blessed to have a urologist that focuses on children but that also specializes in Spina Bifida. We are blessed by his care, skill and education that enables Hayden to live a fuller life.

After such an emotionally serious weekend, our 2 year old knows how to keep us laughing….
Hanna is currently becoming interested in potty training and all of its dirty details. This morning, I was applying a self tanning lotion with a bronzer in it that I was rubbing onto my legs. Hanna excitedly pointed out to Daddy…Mommy pooped!


On another note…below are some of the adorable pictures that we took recently of Hayden and Hanna.

4 months old

Hayden had his 4 month doctor apmt today weighing in at 15lbs 11oz while whizing on the scale:). His weight and height of 26 inches put him in the 75%, just up from his SB Clinic visit. Our big boy is doing well learning and working hard in his physical therapy apmts too. He is rolling over from his side to his back.

He isn't sitting up very well just yet, but we keep him working hard.

His elephant outfit is just so darn cute, we had to get him in it today for his pictures.

Just two more days till his surgery on Friday.

Hanna's swimming lessons

Hayden working hard at tummy time. He should be pushing his head up with his arms reaching forward, but he thought that the pillow meant nappy nap time and he got his arms down beside him.

Here are the kids at Father's Day too.

http://www.youtube.com/watch?v=fwvv5IyPkXM

Hanna is taking awesome swim lessons. Above is the link to the technique and below is Hanna swimming here at week 2.