My son, Oliver, was unanticipated. My husband and I had decided to wait to have our third child another year, but the joke was on us. Even as we made that decision little Oliver was growing in my belly – we’d already conceived! The pregnancy was my healthiest to date, completely uneventful. At my 38 week checkup I asked the P.A. to “sweep the membranes” as my first two pregnancies had had to be induced. I wanted to help my body initiate labor as much as possible. Each pelvic exam I’d had previously had shown that Oliver was head down – but when the P.A. swept the membranes we discovered he was actually breach, and that when they thought they were feeling the sutures of the head they were actually feeling his sweet, baby bum.
The discovery that Oliver was breach created some excitement. I headed upstairs to the ultrasound doctor and was discussing the possibility of turning the baby in utero when the ultrasound revealed a problem. Oliver had twice the amount of normal fluid on his brain (or so it appeared). Immediately the doctors said turning him could be dangerous, as could a vaginal birth, since his brain was under pressure. This was a late developing issue, late in the pregnancy, and we decided to deliver via c-section immediately in case he was ill or there was something we could do to stop whatever was happening to him . I called my husband. It was his day off and he’d stayed home with the kids while I went to my checkup alone and had just cracked a beer when I left for the doctor. Fortunately he hadn’t had but one or two. 🙂 Then I called my dad to bring mom to watch the kids and to pick up my husband and bring him to me.
C-sections are scary. I’d never had surgery before that. Never had stitches or a broken bone. My husband was wonderful throughout the whole thing. The doctor asked if he wanted to see the baby being delivered, and my husband kept it to himself until later how gruesome it really is – along with the baby come your intestines, which they just stuff back inside before they stitch you up.
Oliver was a cute newborn, no doubt about it. But I only saw him briefly as they had to take him away to watch him – he was breathing rapidly – near 160 respirations a minute. I remember his AGPAR score was good, tho I don’t remember what it was exactly. It was five hours before they brought him to me to nurse, and by that time he was deeply asleep.
history: Oliver started out with heavy reflux and was diagnosed with failure to thrive at a month of age and was in the hospital for four days during which they did nothing. While in the hospital Oliver ate like he ate at home and didn’t gain any weight. The only thing they did was verify my milk supply and send us home. He was a sleepy, SLEEPY baby and has always been difficult to feed. Then in October of 09 he got a cold, which became bronchitis in November, and in December he was hospitalized for 20 days with RSV. (He went to the PICU on Christmas day and was put on a ventilator which lasted for five days).
His MRI is the most interesting thing about him. His lower posterior ventricals are enlarged, meaning the brain structures around them are small. Over the last year Oliver’s brain hasn’t grown as much as they’d hoped, but the left lower posterior portion of his brain is growing even more slowly. The left lower ventrical is actually increasing in size as the structures aren’t keeping up with the progress of the rest of his brain.
He’s been described as “a microcephalic infant with reduction deformities of the brain and unspecific myopathy.” Oliver turned one year old on the 10th of this month and has only just recently conquered sitting up for extended periods of time. His movements are jerky and uncoordinated, but he’s motivated and happy. He still eats pureed foods and nurses like an early infant. Oh, and he has some mild dismorphic features (one eye is lower that the other and one ear lower than the other – almost imperceptable to the layman’s eyes) and mild occular abnormalities. He has a remarkably large iris, enlarged corneas, enlarged cupping of the optic nerve, and astygmatism in both eyes.
Oliver has suspected Mitochondrial Disorder, tho I’m not convinced Oliver has a mitochondrial disorder. No one seems certain he has one, or that he doesn’t have one. I dont’ understand this disorder at all. Oliver’s tests have all come back normal. The keryotype, chromosome and microarray all normal, the biopsy results were normal except for his muscle fibers aren’t bundling properly, but its mild. There’s talk of a final blood test, a mitochondrial whole genome, but again I don’t know that will tell us anything either.
So that’s Oliver in a nutshell. We have o/t and speech therapy through ECI and (SHH, don’t tell anyone) we periodically take him to private therapists for additional o/t and speech as I feel the combination of services (private and public) bring out the best in him. (ECI wouldn’t like duplicating services so i can’t tell them about the additional therapies. But we can’t afford the private therapies all the time and ECI is constant so we just keep some info to ourselves.) Not that the ECI peeps aren’t good at their job, I just feel these extra therapists we see bring out more in him than ECI alone . We see Dr. Kane (neuro) and Dr. Gibson (genetics) and are about to ad a gastroenterologist, Dr. Zweiner (while Oliver’s reflux has improved greatly over the last year his constipation has not. Recently, while on daily miralax he didn’t poo for seven days!! oh my gosh), and are going to see a pediatric mitochondrial specialist in Houston.
It has been an amazing, bittersweet journey. Over the last year we’ve been more afraid than we’ve ever been in our lives, felt more love, more passion, more anxiety and frustration than any other time. We’re excited to be a part of the Special Needs community yet sad at the same time. Fortunately Oliver is thriving and we’re very aware of our good fortune. There’s no immediate reason to believe Oliver won’t live a long, full life, and for that we are very thankful.