Tulip Tales: Gage

I am honoured to share with you the journey of this incredible little boy.  Gage was a miracle baby.  He has stolen my heart and he is bound to touch yours!  His parents tell his story.

*****

At 7:59 PM on Dec. 15, 2010, Gage came into the world weighing 1 lb 5.5 oz and measuring just 12 inches from the top of his head to the tips of his toes. It had been a normal pregnancy up to that point, and no one knows why he came at 24 weeks. That is perhaps the hardest part of accepting and processing the last 3 years - we have no answers, and it has closed the book for us in terms of expanding our family. We will not be risking what happened to Gage to try for one more child.

His mum hadn’t been feeling well on the evening of December 14, and when she went to the bathroom around 8:00 that night, the world seemed to stop as she saw bright red blood. Panic ensued.

“He can’t come now! He won’t survive!”

We contacted our doula (who is now Gage’s Goddess Mama and a very dear friend of ours) who met us at our house and accompanied us to Emergency. She was our lifeline - she kept us sane and knew what questions to ask, what to tell the nurses. Once we called up to the case room and began the process of being examined in triage, we were told that we would likely not be going home that night. The news hurt - we had really believed (hoped) that it was something minor - it had to be something minor - that things would be patched up, perhaps an antibiotic given and we would be on our merry way. That was not to be. They administered steroids to try to strengthen his tiny lungs and began a regimen of Adalat XL, Morphine and Gravol to try to stop the contractions that had begun to build while we were in triage. His mum didn’t realize what was happening until the tightness in her back turned to pain that began to recur every two minutes. She was put into a hospital bed, head tipped down, legs in the air and was forbidden from standing or walking.

2 weeks they said - maximum. That’s the most time we could hope for, if we were able to stave off labour at all. We were given all the statistics: heart problems, lung problems, CP, Autism, a very broad spectrum of mental and physical delays. 50% chance of death. His life literally hung in the balance. But 50% was 50% - we had to try. We had to hope.

After her catheter had been placed the next day, his mum began to feel as if his feet were ‘hanging out’, but since internal examination is avoided as much as possible when there has been a premature rupture of membranes, there wasn’t much anyone could do except hold on and hope that the ultrasound we were scheduled for at 4:00 PM would show that Gage was ok. As the nurse completed the sonogram, she told us his fluid levels were normal, but that the doctor was going to have a look to see where the placenta was lying. As the doctor smiled and explained who she was and what she was about to do, we saw her squinting at the screen.

“... they talked to you about having a classical section and the reasons for that, right?”

We nodded and told her we’d been informed that he would be born via classical C section in a high risk theatre with the NICU team ready and waiting to take him to resuscitation. (...if he could be resuscitated.)

“Good, because, my love, his feet are in the birth canal. You’re having him right now.”

Relief turned first to horror, then to anticipatory grief. Life as we knew it was about to change forever.

Back in the case room, the nurse began to fill out pre-operative forms in preparation for the coming section.

“Does he have a name yet?”

His mum didn’t want to say it out loud. It made it too real, too deep. So his dad told the nurses for her.

“Gage. Gage Derek.”

“That’s a good strong name,” said the nurse. “He’ll need it.”

As we waited for the surgery, phone calls were made, prayers were said and all thoughts of the fact that his baby furniture had just arrived in the post that same day were set on the back burner. No one knew how this was going to go, so it was pointless to speculate - we just had to keep truckin’ and face whatever was coming.

“He’s crying! He’s trying to cry!!”

Those were the most important words spoken in that operating theatre. We didn’t get to see him, but we heard the jubilant shouts of the nurse who was running with him to resuscitation. He had cried. His chances of survival had just grown by a millimetre.

After 2 1/2 hours, we were allowed to meet him. The first time we saw him was terrifying. His skin was translucent, dark red and very waxy in appearance. One of his eyes was completely fused shut like a puppy’s, the other only partially open. He was covered in dark hair. His legs were bruised black. We couldn’t see his face because it was covered from the forehead down by the tiniest hat they could find (which was still miles too big for him), tapes, and the breathing tube they had to try to insert 3 times because he was fighting everyone and refused to cooperate. (He’s 3 now and he still refuses to cooperate. His stubbornness is why he is still with us. We hope he never loses that determination.)

He didn’t look like a baby at all. We both started to cry.

The next 5 and 1/2 months were hell. We didn’t want anyone to know he was born at first - what if he died? How would we face everyone then? We avoided people who weren’t close family and who weren’t on the ‘need to know’ basis. We avoided places where there were likely to be pregnant women. That part of us was lost and it was something we would never get back. We would never get to experience it with another child, and his mum began to blame herself in the absence of an explanation for what had happened. We drifted. Neither of us slept. The phone became a scorpion, ready to strike at any moment with bad news.

By the time Gage was 5 months old, he had already developed:

- metastatic bone disease, resulting in brittle bones and a rib fracture that went undetected until we found the healing lines in an x-ray done close to his discharge date. No record of the actual break could be found when doctors pored over every single x- ray he had done to try to find the date of injury - he’d just been too small for it to show on film. It is now thought that this was the reason for his prolonged need for high levels of oxygen - he couldn’t take a deep breath, and as a result, his lung function dropped.

- chronic lung disease. He was ventilated for 9 weeks and 2 days. 6 of those was spent on the oscillator. He would spend an addition 5 months on oxygen at home. We are very happy to say that aside from what appears to be slightly reactive airways requiring inhalers only when he gets a cold, he seems to have outgrown this completely.

- pulmonary hypertension, including an atrial septal defect (which is a hole in the wall between the top two chambers of his heart). The hole in his heart has since healed on its own and he no longer requires medication as his heart/lung condition has been completely reversed.

- retinopathy (for which he received laser surgery)

- a hernia in his left groin (which has since been surgically corrected twice)

- a left intraventricular hemorrhage in his brain which would result in his diagnosis of CP at the age of 16 months.

- a large chemical burn on his back from the chlorhexadine used in the section. It pooled under him when he was in the plastic baggie shortly after birth as he waited for his isolette to warm up. (We didn’t learn of this burn for 6 days.)

- various scars on his chest, legs and arms from electrodes, tape and self-adhesive dressings.

By the time he got home, he had run into many feeding issues. It took him 3 hours per bottle, 5 bottles a day. To this day, we do not know why he refused to eat. He rejected the breast after 8 weeks while still in hospital (despite a good latch and suck/swallow) and he eventually rejected the bottle as well. We ended up feeding him with a syringe for 8 months.

All of the above are run of the mill, every day occurrences in the life of a micro prem. We were told to expect illness at least twice a month while he was in hospital. We were told there would be massive ups and downs. Was it a roller coaster? Yeah. But was it as bad as it could have been? Looking back and remembering the rows upon rows of plaques that lined the corridors, we can say absolutely not. Our dream of a natural birth was taken from us. Hopes for a ‘normal’ child as well as a sibling for him were dashed. But while these are all legitimate forms of loss that we both struggle with even now, 3 years later, hindsight has helped us to heal from some of the trauma of his arrival. He never crashed. He never got any major infections. He never had major surgery. He only had 1 set of positive blood cultures during his entire stay at the NICU. It was slow going, but slow does not mean stopped. He wasn’t sick - he was just small. Looking at him now, we are able to appreciate that concept in its entirety.

Every milestone is reached in his own unique way; some he struggles with, others he achieves with ease. There is no book to follow with Gage (or any micro prem), so we threw them all out and let him teach us what we needed to know. There has been much to be thankful for in his short life and we take every opportunity we can to celebrate it - including his birthday (December 15), his due date (April 4), and his “gotchya” day - the day he came home for good (June 2, 2011). We’ve learned more from him about love and what it means to live in the moment, how to let go of the bad and focus on protecting the people we love and the time we are given with them than we could from any adult. The love of one tiny, 610 gram boy brought together an entire family of four generations spread all over the world. That is a miracle. He is the meaning of the word ‘hope’.

His therapists say they are very hopeful he will walk - he is inches away from doing it on his own. He wears leg splints, but he will not require a walker long term. He babbles and tries new sounds every day. We are very optimistic that he will have some level of speech. He can see. He can hear. He can give hugs and kisses.

If he never wins the lottery, if he never gets a medal, if he never earns an A in English, those things are all small potatoes in the grand scheme of things. Gage has already shown us what he’s made of - he’s still here. 

*****

This 'Tulip Tale' is one that is very dear to my heart. Gage is one of the children in my care at Little Tulips, and it is a privilege to spend my days with him and to watch him grow.

Megan and Jerry, thank you both for opening your hearts and sharing Gage's story. He is a remarkable little boy with more determination than I think I've ever seen in a child. He is vocal and enthusiastic, confident and adventurous. Gage works so hard and he has come so far. We are incredibly proud of him, and so thankful to have him in our group.  Thank you for letting us be a part of his journey!

*****

If you would like to be featured on Tulip Tales, please email me at: juliebrocklehurst@hotmail.com  Please include a brief description of your child and their condition, along with any pictures you would like to share.  I will contact you with specific questions.

Thanks!
-Julie