Tuesday, November 29, 2011

She is in His hands

"Chief for the Medical Staff", by Christian artist Nathan Greene
Our sweet little 9 week old Dahlia has been officially put on the heart transplant list.  Tomorrow morning, she will spend 6 to 8 hours in the operating room, where the most skilled surgeons in this country will implant a left ventricular assist device (not an artificial heart) called a "Berlin Heart". This device will assist her heart in pumping the blood. It will allow her to get off the ventilator and live as a more normal infant on the pediatric heart floor, instead of being all hooked up in ICU, while awaiting a heart transplant. We are so blessed to be at Texas Children's --  only one of 17 hospitals in the nation participating in the study of this device, which is only 2 weeks away from being approved by the FDA. Texas Children's Hospital is the only hospital in Texas offering the Berlin Heart and the first in the southwest to do so. The surgeons operating on Dahlia tomorrow are the head doctors who are over the trial program and who teach other doctors about it. We approach tomorrow with peace in our hearts knowing she is getting the best of care and is in His Hands.  We are sustained and comforted by our faith in, and knowledge, of a Heavenly Father and his son Jesus Christ who love each of us more than we can even imagine, and by all of your prayers.

unbreakable bond between mother and child

the greatest love


Sunday, November 27, 2011

Thanksgiving week in Utah

Two days before Thanksgiving, Jeremy and his beautiful bride Nicole were married in the Draper, Utah Temple. The temple is set up high in the hills, which made for a very chilly, windy photo session.

At the luncheon Dad and I hosted after the wedding.

at the wedding reception

Dad and Philip at the reception


Jeremy's best buddies are happy to help decorate the get-away car.

After the wedding day, it was back to the real world, as Dad spent the day trying to fix Philip's car.


Meanwhile, I walked to BYU campus, where I discovered the Paleontology Museum
6 ft.long  prehistoric alligtor skull belonging to this 37 foot dinasaur eating monster

Beautiful weather to enjoy the last of the fall leaves and the first of the snow on the mountains!


Dad and I and Philip had a wonderful Thanksgiving Day with Dad's oldest sister Beverly, her husband Denny and our nephew Paul and his wife Kelly, who cooked a wonderful dinner.
Beverly and Carl (Dad/Grandpa)
So, it was a happy week for us -- sunshine amid the rain of the past few weeks. We had left Texas with happy hearts, because baby Dahlia was doing so well, and was goint to finally come home right before Thanksgivng. But that was to last only for a day, as her failing heart couldn't keep up any more, even with the medicines, and had to be brought back to Texas Children's. She will be on the waiting list for a heart transplant. So, we are feeling very sad with this turn of events, but know that she is the Lord's hands and He will take care of her, and do what is best for her. Besides this turn of events, something else was there when we got home. Our mission call! We will serve for 23 months in the Rochester, New York Mission!

Sunday, November 20, 2011

So thankful for ....(summary of Dahlia's last 2 weeks in the hospital)

This baby has been making remarkable progress!! Here are some highlights from the week of Nov. 7-12, Dahlia's last week on the 4th floor NICU.

sweet smile for Mama

visit from Aunt Emily

no more feeding tube!!!
  
more smiles for Mama


safe in Daddy's arms


On Monday, Nov. 14, Dahlia was doing so well, that she was moved to a regular room on the 15th floor. What a luxury compared to NICU -- a room with a view, it's own bathroom with shower, and a place to sleep. We had been spoiled by NICU nurses taking care of Dahlia at night, while we went to Jessica's apartment to sleep. Here we were in charge of baby care around the clock, 24/7.  Back to reality with feedings every 3 hours, along with sleep deprivation. From our perspective, however, it's something not  ever to complain about!





During this past week on the 15th floor, another huge step ahead!  On Wed., Nov. 16 , the pic line through which the intraveneous heart medicine was given, was taken out of her arm.  We were now free to carry the baby anywhere in the room. Dahlia had met all the requirements for going home -- being able to feed by mouth, gain weight, and be able to take all medications by mouth.
This Friday, Nov. 18, we recieved the joyous news that the baby is doing so well that she'll be able to come home tomorrow, Monday! They are putting the idea of heart transplant way back on the back burner.

These past 6 weeks have been a journey we would wish upon no one. But what a journey it has been. We have seen direct answers to prayer and have witnessed the power of the Lord, which has worked along with the miracles of modern medicine. She was dying, yellow with a failing liver and other organs when first brought to the emergency room. When she was transported to Hermann, the doctors were amazed she was still alive. Since that day, we have witnessed one miracle after another. Doctors were fearful she might never come off the ventilator, her lungs were in such bad shape. 
so very thankful! for everything -- for every single prayer said by every single person, for a loving Heavenly Father and the great healing power of our Savior, and for the restored gospel and the priesthood that is upon the earth today. I am filled with gratitude that this sweet baby is still here upon the earth and for the many lessons that she has taught and will continue to teach us.


Sunday, November 6, 2011

review of 3rd week in ICU (Oct. 31-Nov. 6)

When Emily and I walked into the ICU at Texas Children's on Monday, Dahlia was being rocked by her favorite nurse (and her very first "boyfriend"), Jimmy. He's just a young single guy who happens to be one of the best pediatric intensive care nurses around. Does he ever have a way with the babies! He has some mean baby swaddling skills and knows just how to comfort a baby. We sure missed him when we had to leave the 18th floor ICU to move to the NICU on the 4th floor. Since Dahlia is now considered stable, her space was needed by a baby who was in a more critical condition. (There are a bunch of other really awesome nurses here too, but we'll especially remember Jimmy.)


Also, on  Monday, Dahlia took another step ahead and was able to take her first nourishment by mouth. Considering this was the first time she ever had a bottle, she caught on real quickly and was so content after. She still was also on continuous feeding through the tube going into her nose and down to her tummy. (the gloved hand belongs to the occupational therapist who helped with that first bottle feeding.)

"I'm so interested in that rattle Momma got me."

"But I'm even more interested in looking at my Momma."

Wednesday was another good day in the ICU, and even better when Grandmother Gwen (Nana) came and had the joy of holding her sweet little one for the first time since the hospitalization. Between us two Grammies, there have been enough prayers said to move a mountain, besides enough tears to fill a lake.

Everyday this week, Dahlia has remained stable and has been making baby steps ahead. On Friday, the bottle feeds were increased so she needed only intermittant feeds through the tube, and finally she got a little break from that tube.

"What does a girl have to do around here to get a make-over?"
Sunday (Nov.6) End of 3rd week in ICU. Dahlia is now 6 weeks old. To me, each day has brought answers to prayers. This week she made much progress with her feeding, and is starting to finally gain weight. When Brian and Emily got home from the ICU tonight, they said, starting today, Dahlia is now being bottle fed every 3 hours -- no more tube feeding! (they will still keep the tube in her nose for a little while, just in case)  She has also tolerated the gradual weaning down of the intravaneous heart medicine -- replacing it with one that can be taken orally. They are going to continue to do so. We are praying that her heart function gains the strength it needs so she can survive without a heart transplant. She needs to be able to feed well by mouth (check), and to survive with the heart med. taken  by mouth to be able to come home. Thank you dear family and friends for all your prayers that help give this little baby and her family the strength needed during this difficult time.