Gus's Story

Maria and I met at church on Aug 23, 1998, in Cincinnati - it was interest at first sight. We exchanged vows exactly 2 years later, and decided to share a kidney in January of 2003. Maria always wanted a herd of kids but I dragged my feet until I realized we might look a teensy bit less silly if we had the excuse of doing all our fun stuff with a kid in tow.

It took us years of working through fertility issues to finally conceive our darling boy on 7-11 of 2010. He's my little 7-11 Slurpy.
My pregnancy seemed to go well enough. I was constantly nauseous the entire time and never really felt "well", had trouble gaining weight for the first time in my life, but the doctors all seemed to think things looked fine...right up until they weren't. At 27.5 weeks I felt like I might be leaking so I called the nurse who said I should come in right away that afternoon. The OB did 4 different tests to see if the fluids were amniotic fluids and said that 3 of the 4 were negative. However, I was 3 cm dilated and it was much too soon for that so he had me admitted at Miami Valley Hospital for 24 hours of observation. No sooner was I in a room there trying to settle in for the evening when my water definitely broke. I was quickly transferred to the PICU where they did a magnesium drip, the first steroid shot, and whatever else to stop the pre-term labor. It worked and I was told I was now an inpatient until Gus decided to make his appearance. They gave me statistics about something like 75% of women have their baby within 48 hours in my situation but they'd sure like for me to hang onto him until about 34-36 weeks of gestation. I made it the 48 hours, got the second steroid shot that helps the baby's lungs develop faster, and laid around the hospital for 10 days. Gus was at exactly 29 weeks on my birthday when I went into labor again, spiked a fever, and they took Gus by C-Section. That was January of 2011.
Gus spent his first 73 days in the NICU. He had a lot of what they call Events where he'd set the alarms off by forgetting to breathe but he always came back quickly and the most intervention he needed was to touch him so he'd startle and start to breathe again. We were really very fortunate all during the NICU stay as we never had an emergent call saying we need to come to the NICU right away, there were no brain bleeds, his heart checked out well, he made steady progress from the vent to lower and lower settings on the CPAP and eventually just to the oxygen. The biggest issue seemed to be his apnea and they just couldn't get him off the oxygen. He was born at just barely over 3 lbs and dipped to 2 lbs, 11 oz, before starting to gain weight but even with that he made more and more progress all the time with a pretty steady upswing in weight. We sort of figured this was just a bump in the road and, after all, we had friends with a 28 weeker and she was a thriving toddler with just some swallowing and perhaps some speech stuff that seemed to be getting overcome with therapy. We fully expected to come out of this unscathed.

Then, about 6-7 weeks into his NICU stay, the doctor gathered us together and gave us some bad news. They found in a routine head ultrasound that Gus has PVL, periventricular leukomalacia. There's a good fact sheet on PVL here, In brief, he has brain damage in his white matter area that controls motor function. Fortunately, there is no damage to his grey matter, the part of the brain responsible for knowledge and learning, so his IQ and intelligence should be normal, whatever normal means!

We took our guy home at the end of March still using oxygen during feeds and on a monitor so we could stimulate him when he stopped breathing. It was so wonderful to have him home with us and not an hour away in the NICU. You can see his little cord in the picture below.

After being off for a crazy long 15 weeks of work, I finally went back and learned how to balance being a mother and an employee. We made it work!
I guess it was around May, when Gus was 4 months old, that we started to have some major concerns. He just didn't seem happy. If he wasn't eating or sleeping, he was fussing. If you put him down, he'd really scream. By early June we had ourselves convinced that he was legally blind. All we knew he really looked at were lights. He wouldn't track a toy or anything across his field of vision. His little muscles were also extremely tight. I couldn't move his feet up anywhere near his mouth, they would only reach maybe halfway and you know how flexible most babies are. We didn't see a turnaround and get relief from our fears of him being blind until we found ABM, the Anat Baniel Method. We took him to see Jon Martinez in Antwerp, OH, (he's now in Fort Wayne, IN) over Father's Day weekend in June and it was like Gus woke up. I guess by ABM terms they would say he woke up to himself. I'll do some separate entries on the miracles of those first ABM lessons. Suffice it to say for now that I believe that was the turning point for Gus who is now a happy little boy taking in all the sights and sounds around him. We eventually got the official Cerebral Palsy, CP, diagnosis. His left arm, hand, and leg seem to be the most affected, though neither leg is really great.

Since June we have seen OT's, PT's, ABM practitioners in Antwerp, Columbus, Cincinnati (he doesn't live here so we can only see him when he's in town visiting his parents), California, and Chicago. We've spent I don't know how many thousands of dollars on therapies and traveling - probably going on $15,000 just for 2012 and counting. The van we bought new in September  is nearing 25,000 miles already in less than a year. The great news is that Gus is making improvements all the time.

He started rolling to one side in March, and to the other side a few weeks later. He started being able to use his left hand more in the past few months and sometimes is even able to grip things between his thumb and fingers, the "right" way, in that hand. He can support himself when placed in a sitting position for a short period of time, though we're still working hard to get him to where he can get himself up into sitting. He's doing some small stuff that will be pieces he'll need to put together to eventually crawl. He just turned 18 months. That's real age, for you fellow preemie moms who talk about adjusted ages all the time.

Oh, he just last month gained the ability to raise his left arm past mid-chest level where it always seemed to get stuck before. He only plays the So Big game for Grandma Carol, though.
We may not be where we expected or hoped to be but we sure are enjoying the journey with our little miracle boy, who makes us laugh and smile every day!
I'm starting this blog to chronicle Gus's journey with all the little heartbreaks and triumphs along the way. I'd like to post at least 1 little something every week. Thanks for reading!

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