Prayers for a some special people - Behind the Camera and Dreaming

Prayers for a some special people

Thursday, March 22, 2012


My heart is truly heavy today and I don’t know what to do but share it here because I just cannot stop thinking about this family .
photo via Valerie Chaney Fagan
Over the past few days I’ve just been overwhelmed with sadness for them. I grew up with this family. We attended church and went to school together. I attended this sweet baby girl’s baby shower last year. I was newly pregnant with Jonah and didn’t even know it. I’ve bought the t-shirt in support, donated to the yard sales and even scored some things for Jonah for the benefit of this little girl, but most of all I’ve prayed and prayed for them. I think about her every day. When I walk in to work they are right next door in the children’s hospital. I can’t help but wonder if today is the last day they will have her. I then think about my own child and selfishly tear up while my heart just breaks. What if I was never able to kiss those sweet cheeks again? What if I had to let him go? I fall apart just thinking about it.

photo via Valerie Chaney Fagan
Then, I try to remind myself that God has a plan for each of our lives and all I can do is stay true to that plan because He is faithful and will never leave us. He has made them strong. He has allowed this little girl a whole year of life to touch so many people. There are SO MANY people praying for this little girl. There are people all over the country praying for her. God can perform miracles, but if that's not his plan may he provide comfort and strength.

photo via Valerie Chaney Fagan
 So, I’m simply asking you to join me. Say a prayer for this family as they wait for God’s plan and purpose to be revealed to them.

 See that no one repays anyone evil for evil, but always seek to do good to one another and to everyone. Rejoice always, pray without ceasing, give thanks in all circumstances; for this is the will of God in Christ Jesus for you.

(1 Thessalonians 5:15-18 ESV)
Here is their story from the Caringbridge site in case you are unable to view it.
3/19/20 Jacey Update: They have decided to take off paralytic medicine. They are not going to take her off the vent right now. She is on the highest settings and not satting well at all. Please pray for us as we sit and wait the next day or however long she has.
Update: Jacey has not been taken off the vent. The risk is that without the paralytic medicine she could code bc the paralytic makes the body be still and not work as hard. She is so weak they are worried her body may not be able to handle it. Her oxygen level is in the 60s and low 70s. She is still on vent and sedation to keep her comfortable. I will update when things change. So if there is no ...update she is doing the same. Thank you all for continuing to pray for her and for us. They have said there is nothing else they can do for her and that no other baby at umc with this bad of pulmonary hypertension has survived. - ----- So I am praying for God's will for our Jacey and strength for her and our family! Love you all
3/20/12 Jacey is still satting in the 60s and 70s. I got to see her open her eyes for a few seconds earlier. She is still very sick but she is so tough. We are still waiting and watching. :(
3/20/12 JACEY UPDATE: she is about the same but her sats have been in 50s. They are about to put in chest tube to relieve pressure on lungs. She got some blood last night. Otherwise she is the same. Still waiting and watching.. thank you for continued prayers!
3/21/12 Jacey is still the same. They are changing up some meds. Her sats have dropped into the 50s when she gets her diaper changed or is being suctioned.. still waiting and watching.. I haven't gotten to go back yet but will update more when I get to see her!
3/21/12 Jacey is still hanging tough.. she is satting 65-70. We are going to take pics of her in her new dresses later this afternoon ;) still waiting and watching
3/21/12 Jacey is satting mostly in the 60s today.. we enjoyed seeing her wiggle around. She is still sedated to keep her comfortable during this tough time. Keep the prayers for strength for my family in the days ahead. We are trying to enjoy all the time we have left with our Jacey girl! Love you all soo much.
3/22/12 Jamie and Jason are getting to hold Jacey! That little stink bug is satting in the 80s right now. Pics to come ;)

Please take a minute and pray for this family and all of the people who have prayed and hoped for this little girl for so long now.xoxo

Background Story: Jacey Maree Ward was diagnosed with Spina Bifida at 16 weeks gestation due to her blood work & sonogram. Dr. Wiggs sent Jamie to the specialist, Dr. Perry. At that point, Jacey had a lemon sized head, her cerebellum was hard to see, her ventricles in her head were enlarged, & the specialist found the "spot" at the L4-L5 vertebrate on her back. Jamie had an amniocentesis to confirm Dr. Perry's findings of Spina Bifida in the sonogram.
Jamie andJason were accepted in a study for prenatal surgery to correct the Spina Bifida. They went to San Francisco, CA to have the surgery. During the surgery, Jacey's heart rate dropped so low they abandoned the surgery. Jamie stayed a few weeks in San Francisco and came back home to recover from surgery. Jamie was still having a few contractions each day even with medicine to help stop the contractions so she stayed home until Jacey was born.


Jacey was growing at the 30% on the growth chart and less than 10% on the growth chart at one point. The doctors monitored her twice a week by sonogram. (Mondays at Dr. Perry's office and Wednesdays with Jennifer at Dr. Wigg's office for now.) Jacey had a BPP (biophysical profile) done at each visit. This test evaluates her practicing breathing, movement, tone (moving fingers or toes,) & amniotic fluid volume. Jacey mostly scored an 8 of 8 on all her tests. Jacey moved very well many times during the day. We were very thankful for her movements! Her Spina Bifida grew normally with her, and the sonogram tech said it looks small so we are thankful!


Jason & Jamie went back to San Francisco at 35 weeks. Jacey was born in San Francisco at 36 weeks 6 days. Her spina bifida was corrected at 2 days after birth, and a shunt was placed in her head for hydrocephalus at three weeks old. She finally made her appearance in MS at exactly one month old! While in San Francisco, they found hemangiomas on her liver. They said we shouldn't have to worry about them, but we needed to monitor them. They doubled in size around 4 mo. old, & we were put on steroids. Then, a few months later she was having breathing/eating problems because the hemangiomas had gotten so big. We had been in and out of the hospital until September 25th. September 30, 2011, Jacey went to the PICU to be monitored & ended up on the Oscillator for 3 weeks & the ventillator a week after that. We moved up to the 3rd floor for 7 days, & were back in the PICU. She was only on the BiPap machine & then high flow oxygen before we were able to move back up to the 2nd floor! We were very thankful to spend Christmas with her on the 2nd floor. On December 29th, Jacey ended up having to go back down to the PICU. The next day she was on the ventillator.


During January, there was talk of sending us to another hospital out of state. It was decided rather quickly that we would be headed to St. Louis Children's Hospital in St. Louis, MO. We had 3 of her 4 arteries to her liver embolised. That procedure occluded the blood flow to 75-80% of her hemangiomas. She was also put on Interferron (a cancer drug) to hopefully make them go away faster as well. At the end of January, Jacey got to come home to PICU in MS. She now has a trach & is doing better getting off her sedation. (At one point, she was on 9 sedatives to keep her asleep with the vent.) We're working on getting her home!


Please continue to also pray for big brother Jay. He worries about everyone! He knows too much for his years! Jacey has a very caring, wonderful big brother!


Thank you so much for all your prayers and support! We love you all!



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