In life there are moments of uncertainty…
But then there’s God.
This is the journey of:
Bella Luciana Tomlinson
In Hebrew means: devoted or dedicated to God.
In Italian and Spanish means: Beautiful.
In Italian means: Light; illumination.
Sunshine in the midst of a storm
Bella was born on August 26, 2011 at 7:05 am (34 weeks premature) upon the arrival of Hurricane Irene in Jacksonville, North Carolina. It was an easy delivery. Bella entered the world glowing. Her skin was beautiful as if kissed with a bit of sunshine.
Breath: An inhalation or exhalation of air from the lungs.
After examination Bella had a bit of labored breathing. Being that she was a preemie a surfactant was given for her lungs so that her lungs (that are a sponge like consistency at birth) would not stick together. At this point the doctors transferred her to the Neonatal Intensive Care Unit. She was assisted with breathing mechanically and was under observation. I was told this could take weeks… months…till I could take her home. This was new … with our first daughter she was a preemie doing well and we were sent home. Now here I am in a storm with my new born who apparently is in critical condition. This was supposed to be a joyous time, walking by faith and not by sight I still thank God… she was here.
“No one ever admits that when you are worried you spend more time on your knees in prayer like never before…That week felt like the longest seven days ever!”
I remember crying and praying and saying “Lord you didn’t bring her this far to take her back from us.” Then I looked at my daughter quiet and content peacefully sleeping. And it came to me just as the word says: “Do not be afraid, for I am with thee.” I totally left it up to God whole heartedly. I prayed for her safety gave her a kiss and went back home to the rest of the family.
The following day I was asked by one of the nurses what would be a good time to take a C.P.R. class. My face lit up! This was one of the requirements before going home. Everything was looking better that day for Bella such as her weight; temperature; oxygen; etc. Everything was in her favor.
That’s the power of prayer. In two days Bella was home in her own bed and we were over joyed to be together as a family.
From September 4th to October 8th Bella was a normal newborn baby. Very much like her sister as a baby. She was quiet and only made a “peep” to catch your attention upon being hungry, wet, or wanting to be held. So on the Sunday night when she appeared to be a bit fussy I was concerned that it may be an upset stomach. When it carried on to the wee hours of Monday morning now not only a bit fussy but a strange sound followed by a cry I felt I needed to make an appointment with her doctor. I was told her doctor did not have any appointments and was forced to go to the dreaded children’s clinic where there are always 50 children with the same 4:15 pm appointment. She appeared to be fine when I arrived. I was quite annoyed that my preemie did not have access to a separate waiting room, let alone over an hour waited to be seen. Finally her name was called I disrobed her and took her to be weighted. Her color wasn’t right and she looked like she had hard time breathing. The nurse then checked her oxygen and nothing was registering on the monitor. We were taken to another room and before I could get in the doorway Bella was now gray and unable to breathe. The physician called for a nurse to bring oxygen and then call EMS. We were taken to the emergency room immediately. Trying to hold my composure for the sake of my 6 year old who was terrified to see everyone in a panic over her new baby sister, and Bella looking so limp and weak she could barely keep her eyes open; all I could do not to cry was have a blank stare on my face as I silently asked God to cover her. From 6:30pm till minutes to midnight Bella was in respiratory distress, breathing treatments I.V. nothing was helping. I stayed with her till 5:30am I was going for a procedure and had her grandmother sit with her until my husband could get back. When I woke up from Anesthesia I remember tears rolling down and I didn’t know why. I looked over at my husband and asked how my baby was. He didn’t say she “was” fine he said she “was going to be fine.” My maternal instinct knew something was wrong. I was told Bella had little improvement and would have to be life flied to another hospital which was almost 2 hours away. Due to bad weather she ended up being transported by ambulance; in route her condition began to worsen.
From 2 hours to 5 months the roller coaster begins…
We arrived at the hospital as my husband wheels me in only to find out that we arrived before the ambulance and her condition worsened in route. After arriving Bella was admitted to Pediatric ICU in critical condition and then intubated and put on a ventilator. The ICU doctor came in and explained that she would undergo blood work; x-rays and a series of test to find the cause of her respiratory distress. We were finally called back to see our baby. Bella was a tiny bundle of tubes and wires; in a cold looking iron crib. We were told that this was one of the best hospitals so we were expecting her to be diagnosed and fixed in a weeks’ time. One week turned into two, then we said a month, a month turned into Thanksgiving, Christmas, New Years, Valentine’s day, St. Patrick’s Day, The season of Lent, and Easter. From a rare upper respiratory infection, to multiple blood transfusions to interstitial lung disease, to improving, to no change, to weaning vent settings to the Oscillator vent machine. From a central med line to a broviac neck line, to a tracheostomy to a feeding tube, to a PDA ligation (hole in heart repair) to steroids to scratching their heads to hypertension, to checking the hypertension to puncturing the heart to starting CPR. Yes it has been a rocky, windy; ugly; bumpy road, and through it all God has been the driving force to have faith in his word and watch his promises to us manifest. On February 27th, 2012 Bella was tired and frustrated. The doctors finally said what we had been dreading to hear … Bella needed a Double Lung Transplant. Bella was put into an induced coma to preserve her state until there was a game plan in place, Doctors found a great pulmonologist with great experience in Houston, Texas to take over her case.( there are only 2 hospitals in the country that do infant transplants) Her diagnosis seemed similar to other children needing lung transplants.
“I counted my blessings… I thought driving an hour and 30 minutes and cutting it close on gas was challenging, try getting notice 5 days in advance that our family will be split almost 20 hours apart for an uncertain amount of months?”
We conferenced called the doctor at Texas Children’s Hospital on Wednesday April 4th at 2pm and discussed her diagnosis. And by 3pm we were being told that we will be going to Texas on Tuesday April 10th. When God moves… he really moves! Mixed emotions stirred but we were determined to look for a way that would improve our daughter’s quality of life.
As I kissed one part of my family good bye I was with the other portion ready to see what God had in store for my little one. As the plane took off and my eyes grew misty I held myself together knowing that God is always in control. Upon arriving Bella was already proving doctors wrong. Being transported on a home ventilation system (LTV) having her medication dosage cut in half during flight; and being weaned on her vent settings. Amazing…..
She was woken up two days later. Doing well and having her first taste of bananas by Friday! Don’t tell us what God can’t do, he is awesome.
Bella took off in the right direction still being feisty as ever she kept everyone on their toes. After numerous test and examinations doctors found what they suspected. Bella had a rare genetic disorder called Filimin A Mutation.
This disorder can affect people in many ways; it decided to affect Bella’s lung function or the lack thereof.
On May 20, 2012 at 8:30 am I prayed, placed her bible in her crib and kissed Bella
“see you later” as she rolled to the O.R.
31 Days to date Bella received what we had been praying for a match for a set of new lungs. At this time I sent out a massive text to pray without ceasing for our daughter as she went in to this major surgery, also asking for prayer for the family that lost their loved one to give ours a better quality of life. One of the nurses said the lungs were white and looked like an angels wings which was rare. How comforting when these signs are placed by God. Being still and talking to the Lord reassured me that his will be done, and it was. Having updates after updates of how the surgery was progressing I was confident that the Lord had his angels ’round about. By 6pm we had gotten word that surgery went well and she would be ready to be seen shortly.
Now here we are 2 weeks out and Bella is breathing well and making progress. We still have quite a journey ahead of us. We will be far away from home; friends and family for the next 3 months. We welcome friends and family to follow us on our amazing baby, Bella’s road to recovery. We appreciate your continued prayers and financial blessings through the COTA foundation. Thank you for taking the time to read about just a fraction of what the Lord is doing in Bella’s life.