As many of you know, Amelia Kelley has fallen very ill. She was brought to the hospital Easter weekend for IV hydration, but after a day at SAMC, she became unstable. Her parents, Jenna and Jeremy, decided it was best to have her airlifted to Atlanta, where her specialists reside. They made the impossible decision to leave their precious 3 year old with the team at SAMC (where both parents work), and make the 3 1/2 hour drive to Atlanta in order to meet her there, where they don't know the staff.
Her condition was, and is, incredibly serious, and as you can imagine, no one wants to see their child in such a situation.
Once they were in Atlanta, Amelia was diagnosed with sepsis and colitis and was admitted into the pediatric ICU. The following are previous updates from her mother:
April 2 @ 9:33am EST
"Many of you have asked for updates so, I can let you know where we are as of right now. Diagnoses so far are sepsis and colitis. She has a 1:1 nurse. They’ve been able to wean her vent settings down ever so slightly. Her temp is still 104 and they are unable to give Motrin due to her bleeding times (for which she just received FFP (plasma) so she’s on a cooling blanket now.
There was some shaking that was concerning for seizure activity so they are going to start continuous EEG. She’s requiring A fair amount of epinephrine to keep her blood pressure in the 70s/80s, she remains sedated, she’s on 2 IV antibiotics and they say her sputum cultures are growing gram negative rods (for all you healthcare friends)
This is where we are. We are still in shock how quickly this all happened. Thank you so much for all of your kind words and prayers."
April 4 @ 10:22 am EST
"Good morning friends and prayer warriors.
It was confirmed that Amelia did suffer septic shock and SIRS. They are unsure of what caused the colitis (no actual organism was found)
Amelia is making steady progression. The EEG revealed no seizure activity. Her fever spiked back up to 104 again last night but broke again by morning. Her lactic acid has gone from 2.3 down to .9 and her bleeding times have improved (no more FFP)
Her belly continues to be bad from the colitis but there are even improvements there and they are planning to wean her vent settings today with the hopes of extubation (so slow and steady is the course).
We have received such an outpouring of love and concern for our baby and I cannot express enough to you our gratitude for your prayers and offers to help.
We trust in our Father and put everything is His hands knowing that He loves Amelia even more than we do and that His will is divine.
Thank you all again for following.."
Thursday was an extremely rough day for Amelia, Jenna, and Jeremy. This was her status from her mother:
April 5 @ 9pm EST
"UPDATE: stable but fragile
Amelia had a very rough day today. Although her sepsis seems to be improving, her respiratory status has worsened. Initially the plan was to extubate and she was on pressure support. As the day progressed her oxygen demand kept getting greater and she eventually had to go back to 100% O2 on the vent. Even on the ventilator, they were not able to keep her oxygen levels up and around 2 o’clock today, Amelia coded.
Mia is now on an oscillator (a special type of vent) and they’re giving her paralytics to keep her still. She has a 1:1 advanced competency nurse and we are blessed for such amazing medical and nursing staff.
We continue to praise God for watching over our daughter and for the peace and comfort He offers us in this traumatic time. Thank you for your continued prayers."
Update from Jenna:
April 6 9:41pm EST
"Romans 8:26-27 | NIV
26 In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans. 27 And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for God’s people in accordance with the will of God.
A lot of praying over Amelia today. A lot of waiting for changes and a lot of tears. A lot of leaning on Gods promises and knowing above anything else we Can trust Him.
Unable to wean from oscillator.
Labs every 4 hours
Magnesium/potassium/ phosphorus replacements all day
Current drips: epinephrine. Milronone. Morphine. Rocuronium. TPN/lipids. Versed.
Belly (colitis) much improved
We will continue to update everyone as much as possible. Thank you so much for all the love for sweet Amelia."
During the end of 2013 and beginning of 2014, my best friend, Jenna, and I were pregnant at the same time - both with little girls. It was a very exciting time for us, even though we lived thousands of miles apart. We shared stories and symptoms, and we bonded over this incredibly special experience that we were able to share.
We have known each other since we were 10, and have been very close since the age of 13. Through all of the ups and downs of life, nothing has been more challenging than to watch from afar as my best friend experienced extreme difficulties during, and since, our pregnancies.
Although Jenna's pregnancy was relatively normal, she had to come out of work early for contractions. She was put on modified bed rest at 30 weeks because she had regular, timed contractions with any physical exertion, but she was fortunately able to deliver at 39 weeks.
Exactly one week before I had my own daughter, Jenna and Jeremy's daughter, Amelia, was born on May 16, 2014.
Jenna was so excited to have a daughter, as her first two children were both boys, and she felt like her dreams of having a complete family were finally coming true. Although Jenna and Jeremy were blessed with a beautiful little girl, it soon became apparent that Amelia was not well.
She was flown to UAB at two days old, and they determined that her colon was three times the size it should have been. She went into emergency surgery because her colon was close to rupturing, and she had a colostomy placed at four days old.
She received a diagnosis of Hirshprung's disease (a birth defect in which nerve cells are missing at the end of a child's bowel) after a rectal biopsy, and her bilirubin was also so high that her parents weren't able to take her out of the isolette/phototherapy. She was on TPN (Total Parenteral Nutrition) and also required a blood transfusion.
When she was recovering from surgery, one of the medical professionals mentioned her heart murmur, and they ordered an echo and discovered she had three congenital heart defects. An ultrasound of her brain was ordered when a NP thought she may have had microcephaly, and they found she had agenesis corpus callosum (a rare birth defect in which there is a complete or partial absence of the band of white matter connecting the two hemispheres in the brain), which was later confirmed with an MRI.
All of this happened in Amelia's first weeks of life.
Children's Hospital consulted a geneticist, but Jenna and Jeremy are both very well trained in the medical field. They are both seasoned RNs, and all they did was google all three different congenital defects Amelia had been diagnosed with, and they found that she most likely had Mowat-Wilson Syndrome.
Confirmation of the very rare Mowat-Wilson Syndrome came around 10 weeks of age for Amelia.
Jenna pumped for eight months -while working as a full time RN- so that Amelia could receive the best nutrition possible. They even bought a deep freezer to store the extra milk, and Amelia was able to receive breast milk for 14 months.
Despite Jenna's best efforts, Amelia had to have a PEG tube (percutaneous endoscopic gastrostomy, a procedure in which a flexible feeding tube is placed through the abdominal wall and into the stomach) placed at Christmas time in 2015 for FTT (Failure to Thrive).
She stopped eating and drinking altogether by September of 2016.
Amelia started PT/OT and speech at ten months, and Jenna and Jeremy had to do three IEP meetings to make sure she could get speech therapy four days a week and PT/OT once a week, as well as a 1:1 aid. They have both dedicated everything they have to ensure their daughter has the best chance to thrive, despite her extreme medical difficulties.
I originally started this Go Fund Me as a way to help Jenna get the special van that she needs in order to transport Amelia in her wheelchair.
Unfortunately, I am now creating this fund as a way to support Jenna, Jeremy, and Amelia through their long journey of healing that they have ahead of them. Through everything that they have had to endure, Jenna has never asked for help. Both Jenna and Jeremy work incredibly hard to support their family and the extreme costs of Amelia’s medical needs. They had been denied traditional Medicaid for Amelia, and it took years for them to acquire a Medicaid waiver for her disability. This has led to excessive medical costs even before she recently became ill.
As their medical bills pile up, both Jenna and Jeremy have had to take time off of work in order to be at an out of state hospital with their very ill daughter. Once Amelia is on the mend, they will have to continue to take time off in order to ensure that she is well enough to return to her normal routine. Any support is appreciated, even if through prayer and words of encouragement.
Amelia's parents are incredibly grateful for the outpouring of love and support they have received since she fell ill and want to thank everyone who has taken the time to include precious Amelia in their prayers.
All funds received will go towards Amelia's mounting medical costs.
If there is anything above that, those funds will go towards the special van that she will need to accommodate her wheelchair.