Grace-Marie was born on November 14, 2007 a day before her dad’s birthday. It was truly amazing. Her dad and my oldest son were there to coach me on while bringing Grace-Marie into this world. She was born at 7:30 a.m. 5 lbs. 2 oz.. I was so happy to finally see her for the first time. That’s when it first started Grace’s heart beat was going really fast so they wanted to check her out really good before I could hold her. The morning turned to night and I still could not see Grace.  Grace would not eat so they wanted to watch her in the NIC (Neonatal Intensive Care) over night.  One day turned into seven in the NIC. Grace began to eat a little but was not very responsive to touch. She also began to not keep what she ate down, therefore she was becoming very lethargic.

No one knew what was wrong the doctors had not a clue, they kept waiting for things to change running different test and so forth. By the ninth day Grace-Marie was transfered to a new hospital the UCLA NIC  unit. I continued to pray as I listened to the doctors tell me she would not move and they needed to get her somewhere, where the doctors knew more about helping Grace. Grace was not breathing on her own by this time and she stopped holding my hand.

Once at UCLA the doctors just wanted to stabilize Grace. They wanted to track down her new born screening test with the hopes of finding information to formulate a treatment plan. The trouble with that was it was a Saturday and most places were closed. Grace’s dad and I were lucky that we had a doctor on staff that could get in touch with someone to get the results.  Grace condition was really bad and they were not sure if she was going to make it. Once they received the results cretin things began to get ruled out.

The doctor met with us and explained to us that Grace had a rare metabolic disorder and they were trying to narrow it between two that were in question. They wanted to start her on a dialysis right away to get the toxins out of her blood. The problem was they were not sure if it was going to work because she was so small. They took us into Grace and explained everything they were about to do. They had to place a small catheter in the side of her tiny neck. When I saw her laying there I felt so helpless and hopeless. I pulled together all the strength I had and decided that if this was the road I was dealt, I was going to have to take it and be strong for Grace.

Propionic Acidemia is what Grace was diagnosed with.

The two and half years of Grace’s life has been full of doctor appointments and emergency room visits.  Some that have left me devastated. And other time the visits have adverted a crisis. These visit have given her a boost of energy so that she remains stable. Most of the time I spend praying and educating myself on the disorder.

Grace was so dehydrated one time that they could not find a vain anywhere. They had to go into a bone in her leg. Yes, they had to drill a hole in her leg to access the point they needed. Well it did not go so well the first drill did not work so they had to try again on her other leg. Three long hours to get an IV started. Grace was beginning to decompose more and more and slowly slipping away from us. Well we made it through with God’s Grace, that was a two week stay in the hospital.

The next month we got a permanent port placed for Grace. Grace now gets her blood drawn through her port and also all of her IV fluids when she is unstable.

Grace is on a special diet to help her remain stable and receive all of the nutrients needed to grow. Then she all of a sudden did not want to eat anymore or drink anything. The doctors decided that a G-tube was needed to help her to remain stable and to continue to grow. We still have doctor visits once a month to flush her port and every three months to discuss her growth and diet with the genetics doctor. The common cold drives us crazy and keep us on our toes.

Grace has physical therapy, speech therapy, occupational therapy, infant stimulation, and feeding therapy threw out the week which keeps me pretty busy.

Sometimes it’s really hard.  Most of the time I try to be thankful for every moment with her. Grace is one of the greats joys in my life.

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updated 8/28/18

Grace-Marie was born on November 14, 2007 a day before her dad’s birthday.

She was born at 7:30 a.m. 5 lbs. 2 oz. I was so happy to finally see her for the first time.  That’s when it first started Grace’s heart beat was going really fast so they wanted to check her out really good before I could hold her.  The morning turned to night and I still could not see Grace.  Grace would not eat so they wanted to watch her in the NIC (Neonatal Intensive Care) over night.  One day turned into seven in the NIC.  Grace began to eat a little but was not very responsive to touch.  She also began to not keep any milk down therefore she was becoming very lethargic. Day by day Grace was slipping away. She was transferred to UCLA where she could be cared for better. It was at UCLA that her New Born Screening revealed she had Propionic Acidemia. The doctors explained to us that it is a rare metabolic disorder.

For the first two and half years of Grace’s life was full of doctor appointments and emergency room visits.  Some that left me pretty devastated, Grace received a permanent port so that she could have blood draws and kept it for the next six years. It was magical and helped out a lot whenever she was unstable, she also had a G-Tube placed so she can receive her special diet to help her remain stable and receive all of the nutrients she needs to grow. Grace is ten now almost eleven we continue to take it day by day some good and some not so. Grace continues to have physical, speech, occupational and behavioral therapy throughout the week, which keeps us busy along with a full day of school. What I have learned the most so far from this experience is to be as present as I can, that way I can learn as much as I can on this journey one day at a time.

Grace is one of the great joys in our life