I thought with the passage of time, the memories would fade but this is not so. Every day it crosses my brain. Almost every hour.
Today I celebrate Esther’s Birthday and how she was eventually ushered home from the hospital 100% healed.
This is her story, and although she is too young to tell it, her story still has me marveling at the grace of God; His goodness and His mercy.
So I want to share with you this miraculous story of hope as we celebrate another year of Esther’s victory over death.
There was fluid pouring into my daughters chest cavity. My doctor, typically calm and stoic looked positively panic-stricken.
I was sent straight to the hospital Perinatal Unit. More ultrasounds. More tests.
Numerous doctors coming in and out of the room to look at the ultrasound. Blank, bleak faces. Everyone stunned.
What was this?
Fluid was pouring into her chest cavity and filled up to a point that it collapsed her lungs. At the rate the fluid was invading her cavity it would quickly start affecting other organs besides her lungs.
Her heart, brain and liver would also be damaged and destroyed. Being born brain-dead was an astute possibility.
So Esther needed to come out as soon as possible. Even so, doctors did not think her lungs were ever capable of working.
Then they would have 3 minutes to remove the fluids from her cavity and get at least one lung working or severe brain damage would result due to lack of oxygen.
My husband and I balked. We even refused treatment if this was are only option. No. No. No. There must be another way.
After a long and terrifying night, an answer came by morning. One doctor promptly arrived at 9 a.m. in our room perky and ready.
She had a vision in the night while sleeping. She saw our daughter on an ultrasound in her dream that pinpointed the problem and a viable solution.
When she came into work, her ultrasound dream aligned with the real ultrasound.
Her idea was to do surgery not after the birth as first suggested, but before.
The surgery would occur in-utero. Doctor’s would attempt to drain the fluid before the c-section giving the other doctors more time to get her lungs working since they wouldn’t be wasting time removing the fluid.
This created a greater risk for me as the doctors feared the needle may accidentally puncture me causing internal bleeding. A deadly situation for myself.
The room of almost 50 doctors and the adjacent room of another 30 or so doctors, nurses and staff erupted into applause. Not a dry eye in the room.
Esther’s first victory. The doctors were shocked that both lungs were working on their own.
Now Tom and I are a bit naive. We thought the battle was won and we’d would be going home in a week or so after the routine tests.
The problem? The fluid kept coming back. It kept pouring into her chest cavity. This is known as a condition called congenital chylothorax.
Too much fluid in your chest cavity results in difficulty breathing, eating, and eventually you die.
So doctors kept doing a procedure called a “tap” to drain the fluid out of her chest cavity.
But this procedure is tramatic on a newborn; how much could a 5 pounder endure and every tap risked serious infection. And in turn, die from infection.
Without this healing fluid, how was our child supposed to get better? To make matters worse, our baby wasn’t able to nurse or even ingest formula for nutrition.
The issue with congenital chylothorax is that her duct system could not break down the larger fatty acids resulting in the fluid chyle leaking into her cavity.
If you’ve ever looked up the composition of breast milk you’ll see it’s made up mostly of these larger fatty acids.
Her only nourishment was IV’s.
She was rapidly loosing weight and getting sicker and sicker by the day. The hopelessness was overwhelming.
Even if our child survived, would she ever nurse? Would she ever be able to eat or would it be a lifetime of tubal feedings?
I immediately brought this up to the nurses and doctors but they brushed me off saying she was fine.
But my killer maternal instinct feared this cough.
It wasn’t long before we received the call.
Esther contracted RSV in the hospital and was whisked out of the NICU unit for fear the other babies would contract it and also die from this virus. Several years back many babies had died in this very NICU due to RSV.
RSV in an adult looks like a common cold but in babies, especially premature babies, it can be deadly.
Esther contracted RSV because she was losing all her “good fluid” making her susceptible to just about anything.
Doctors and nurses told us to prepare ourselves. She might not have long, would likely not last through the night.
There was no way a 5 pound baby would be able to fight both congenital chylothoax and RSV. The next 24 hours were critical.
Our pediatrician still tells me to this day that I had no idea of how bad things truly were. They were worse than I was ever made aware of.
We marvel at how God helped Esther fight RSV.
We thanked Him for His mercy.
But she still had chylothorax. We were back at the beginning. Fluid pouring into her chest cavity. X-rays, more x-rays, drainage. No improvement.
Weeks went by. Things didn’t get worse, but they didn’t get better either.
Tom and I continued to pray. Nothing changed.
Yet one day, we both went to the hospital feeling optimistic. We thought today is our day; we will get our miracle. She will be healed.
She was not.
She was just as sick as ever. Some friends of ours even told us, “you guys are crazy to still believe God is going to heal your baby, it’s time to accept things and be realistic.”
This we did not want. All the info we had read clearly stated that surgery could end up causing a lot more harm than good.
But we were getting to the point where no other option was available to us. If the doctors continued to tap Esther eventually a serious infection would occur.
As the surgeon stated, “Esther has 90 ml of fluid surrounding her lungs, and in the very best of circumstances, she might be able to drain 5 ml per day on her own.
If the chylothorax was going to heal on its own… which sometimes happens when the doctors give IV’s and don’t stress her system it would have happened by now.”
That God would just remove that 90 ml of fluid instantly.
There was no other way, He had to perform a miracle for our family.
That day Tom and I both felt at peace with the situation. We both surrendered our wills. We were beaten. Finished.
God, YOU decide what YOU want for us. We lay down our defenses. If you want to take Esther home, it’s obviously YOUR will, take her. We will not fight anymore.
Tom went alone to the hospital that day and I prayed and waited for his call. We always had the same ultrasound technician. She was kind, but a stone-faced realist.
She checked those fluid levels in preparation for surgery. “Hmmmm”, she said with a quizzical look on her face. The stick she used seemed to be faulty.
It was indicating zero liquid in the chest cavity. It was saying Esther’s cavity was clear.
The ultrasound technician asked, “was she tapped last night?” My husband immediately said, no.
This meant that Esther disposed of 90 ml of fluid in just a couple of hours prior to her last ultrasound that had occurred less than 12 hours before.
Not scientifically possible! So the technician switched instruments and dug out the fine-tuned instrument.
Same result. No fluid! Praise God. The shock permeated the PICU unit. Everyone was buzzing.
Although the fluid was gone and it seemed her duct was healed, Esther still needed to be able to consume some fats before we could ever consider taking her home.
Many more weeks went by. Still no improvement. T
his is where I have to hand it to Tom and give him a ton of credit. He went online. He started doing his own research to find answers instead of relying on doctors.
Our issue was that our daughter was on these $1000 a day IV’s that supplied nutrition but nothing else.
No fat. No breast milk.
Our baby was not allowed fat as it could cause the chylothorax to return by rupturing that duct again.
The fluid would then invade her lungs once again and she’d suffer respiratory distress. We’d be back at square one.
And yet, the research showed that it was breast milk, God’s design that could heal our daughter.
Tom linked up to a man whose son had the same condition as ours. This guy bought his own centrifuge to spin breast milk in order to get all the fat out. A solution at last! We could give our daughter the skim milk and the skim milk would heal her.
How simple we thought. Doctors shirked. No one liked the idea. They didn’t want to do it. And again, I give Tom so much credit. He pushed and pushed and finally they gave way.
My parents (bless them!) bought us an extremely expensive centrifuge. And as Tom will tell you, nothing can bring you closer to you mother-in-law than spinning your wife’s breast milk in the kitchen together.
Day after day, Tom and my mom spun. We’d take it to the hospital. We fed it to our daughter. Another week went by.
Esther was starting to thrive for the first time. Tests were run. She looked ok. No fluid in her lungs!
We could not get discharged until our daughter could consume at least some fat. We started to add a little fat, a tiny bit at a time.
Then an ultrasound was performed to see how she was doing. Esther did well. And little by little Esther took on more and more fat to the point where the hospital said, there’s really nothing more from our end we can do, you’ll have to take her home and she’ll be an outpatient from now on.”
I’ll never forget our first Sunday home.
Tom took our oldest daughter Emma to church and I remained home with Esther. It was serenely quiet when I heard His voice.
“You know you want to nurse her Laura and she’s ready to be nursed. Trust Me and do it.”
Despite being explicitly told by doctors that I was not allowed to nurse Esther, that it was far too dangerous and that we’d end up right back in the hospital, I listened to that strong, soft voice.
What was I to do? Should I obey? Esther was eager to nurse and I was just as eager.
So I did it. I savored every second and knew in His glory that no ultrasound was necessary, that by God’s grace she was 100% healed and restored. No more pain for Esther Joy. No more worry for Tom and I.
Despite warnings from doctors that Esther might never be normal and have issues, she has not.
Today she is a vibrant and bouncy 7-year-old and I thank God every minute of every day for her.
What a blessing she is in my life. So often, I doubt His goodness, His grace. But Esther is a daily reminder that I can trust Him. I hope you know you can too! God Bless.
Timeline of all the miracles
- February 15th 2012 my OB-GYN took an ultrasound and saw the fluid in Esther’s cavity. Esther would not have made it two more weeks in utero.
- February 16th Dr. Singh had a clear vision on how she was going to tap me (removing the fluid) prior to birth
- February 17th Dr. Singh’s procedure worked and Esther came out crying as there was applause from everyone (both lungs were working).
- Esther contracted RSV in the NICU and was transferred to the PICU. A premature baby with congenital chylothorax (at the time she had 75-100cc’s of fluid in her cavity in addition to RSV. The outlook was bleak that she would even make it through. Not only did she not have to be placed in a induced coma (because the convulsions of the sickness can be so bad) she made it through with very little struggle. A new set of doctor’s finally agreed to allow Esther to try the skimmed breast milk.
- Surgery was discussed because it just wasn’t safe anymore to continue to tap Esther. Sooner or later an infection would occur. The next day the ultrasound showed that the fluid was completely gone.
- March 20th 1 pm Esther tasted the skimmed breast milk for the first time. There was never another time that Esther’s fluid had to be removed.
- March 30th we went home.
- A week later Laura decide to let Esther breastfeed trusting that Esther was completely healed and the ultrasound the next day confirmed that Esther was once and for all healed!