Lore’s Story

The doctor explains to us that her situation is totally out of control.

daddy at birth cropped

83 Days with Baby Lore: A Father’s Diary 

The fairy tale

mommy at birth croppedAug 17, 2010 – 08.39 am – Maternity Hospital Diest Belgium
After 3 years of unsuccessful attempts, several miscarriages and a lot of tears, our dream finally comes true. We had nearly lost hope, but there she is – our little baby Lore. Our baby girl is so pretty, so lovely, and in perfect health. It’s Love at first sight, Love with a big L. We are completely mad about her. Everyone around her melts at her long dark hair, her beautiful eyes, and her charming smile.

Sept 12, 2010

looking at parent croppedToday, it is party time. We have invited about a hundred friends and relatives to our garden. The entire afternoon she is in the limelight, charming all of our guests. She already sleeps through the night and never cries, even when she is hungry. She makes this sweet little “he” sound to tell us that she is awake. Ok, she also can scream, especially when we have to stop for traffic lights. She can’t stand this!!!

Oct 9, 2010

Lore’s grandparents give a party to celebrate their 60th anniversary. Lore loves parties and being surrounded by loving people. Sadly, 4 days later, grandpa leaves us forever.

Dark clouds in the sky

Oct 19, 2010

At the funeral, Lore has a little bit of fever and a runny nose, nothing to get worried about.

Oct 20, 2010

big smile cropped colorShe still has a little bit of fever and a little cough. Just to be sure, we take her to the pediatrician. He decides to keep her in the hospital for a couple of days to observe her. We are told it might be a respiratory virus called RSV a little bit in advance of the season.

Oct 24, 2010

The RSV test turns out to be negative, but Lore is coughing more and more. Eventhough we are waiting for other test results, the doctors are concerned and decide to transfer her to the larger, better equipped University Hospital of Leuven. She is placed in a normal room in the pediatrics ward.

We are awake with her the whole night supporting her through numerous coughing fits. With each one we help her to stand up straight and to expectorate. All night we quietly talk to her, reassuring her and giving her tons of kisses.


The descent to hell

Oct 25, 2010

sleeping croppedThe staff decides to admit Lore into the pediatric intensive care unit (picu). Her heartbeat is running out of control – between 220 and 250 bpm! Lore’s breathing rhythm peaks around 100 to 120 per minute, too much, far too much.

That evening we have to go home. Now that she is in the picu, we are restricted to their visiting hours: 1 hour in the morning, 1 hour in the early afternoon, and 1.5 hours in the evening. We are no longer allowed to spend the night in her room. It feels terrible.

Oct 26, 2010

When we return to the hospital the next next morning it is a horrible shock. Lore is connected to a ventilator and she has been put in a light coma. Her heartbeat and breathing rhythm are under control, but the x-ray images of her lungs are not good: only 15% is intact, the rest is infected.

Antibiotics, Ventolin, oxygen, painkillers, that’s her menu now. This infection is causing enormous damage to her body. Lore is also on a heart and lung bypass machine called ECMO and has received a total blood transfusion. The doctors have also connected her to a dialysis machine as the infection has damaged her liver and her kidneys. A ventilator, a dialysis machine, and an ECMO machine! It crushes my heart to see her like this.

In the meantime, we have the test results. They confirm she has whooping cough. The next days her health is stable, critical, but stable. But, we are aware that there is a deadline. She can only be on the heart-lung ECMO machine for a maximum of two weeks. After that, she will face other complications. One day, the doctors will have to disconnect it and that means that she will have to breathe by herself again otherwise…

We can’t stop encouraging her, repeating continuously how much we love her and how much we believe in her. In her light coma, she can hear us, but the only way for her to show it is to move her fingers and wrap our forefingers in her hands.

A last glimmer of hope and then … the end

Nov 4, 5, and 6, 2010

For 3 days, we feel really euphoric. The last 3 x-ray images of her lungs show a real improvement. She is clearly fighting and gaining ground against the infection!

Nov 7, 2010 during the night

We get a first call from the hospital around 3 am. Lore is getting more and more unstable.

A second call comes around 6 am. The doctor tells us that the infection has gotten into her blood and that they had given her a second total blood transfusion.

The doctor gives us the authorization to come right away and to enter the intensive care unit outside the visiting hours. We feel a strange wind. We dare not think further about what this means.

When we enter the room, the doctor explains to us that her situation is totally out of control. She already has received 5 times more antibiotics than normal, and that … “we are going to lose her.”

pink boppy croppedWe scream “NOOOO” and start again to encourage her, but the doctor explains that the situation is irreversible. The whooping cough has destroyed her vital organs  and there is no possible way back. The doctor tells us that it is best to disconnect her slowly from all of the machines except the ventilator so that she does not die from suffocation.

The nurse lays Lore in Mum’s arms, and turns the monitors so they are facing backwards while the values slowly decrease. I follow them second after second until they all drop to zero.

Only 10 seconds before she passes away I whisper in her ear a promise, the promise to lead an endless war against whooping cough, the promise to never rest and never give up, until the day I die.

Give whooping cough no chance (EN, FR, NL) : www.loredarche.be/index.html

Learn more about pertussis.

Thanks to everyone for sharing Lore’s Story. You are helping to raise awareness and make a difference. If you would like to comment or offer support to the family, please visit Shot by Shot on Facebook.

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