After my son Kenneth Oliver Helgeson was born, I noticed right away his head was oddly shaped. Knowing that some babies come out with odd shaped heads, I decided not to look like some crazy mom and told myself that I’d give it the 24 hrs they say a babies head goes to normal shape. After the 24 hrs and his head still looking odd to me, as well as me being able to feel a ridge on top of his head, I knew in my gut something wasn’t right. At his 2 week appt it was brought up to his doctor who then referred us to Doernbechers in Portland. We had our first appt when he was 2 months old where a doctor had said it looked like he had Sagittal craniosynostosis. After the long talk with her and what would need to be done, my heart sank. I was so scared for my baby boy.
They had us come back when he was 4 months old to get the scans and meet with the plastic surgeon, neurosurgeon, and the psychiatrist. A few days after his appt and returning home we received a letter stating it was confirmed he had it and that surgery would be scheduled sometime between the age 6-8 months. I gave them a call and got his pre-op, surgery, and post-op scheduled. We drove up on the 27th of November 2016 since his pre-op was at 11 am on the 28th.. After seeing the doctors that day I only got more and more nervous about the next day. I was told we had to arrive at the hospital at 6am on November 29th. After they got all his vitals done the doctors came and took him from my arms at 7:25am telling us they would send us a page when they start surgery. My heart sank, I couldn’t stand or sit still, I didn’t even care about eating. Finally at 9 am we got the page saying they were starting.
Finally, his surgeon came out and got us at 1pm and told us everything went smoothly, that he had a blood transfusion, explained that he would have swelling and that he’d need to be in the PICU for a night just to make sure nothing goes wrong. He also told us if things went well we would be able to leave in 2 days. After we got in his PICU room a few hours later, they realized he wasn’t having any urine output. So they decided to redo a foley, he had it in for a day when they decided to remove it again once we were moved to the family room. 6 hrs passed by and no urine output so they tried 4 times to put a foley in, each time it wasn’t working and having to hear my baby scream in pain. They finally decided they’d put a stent in. On top of that he was refusing to eat. My poor boy was in pain, wasn’t eating and would puke everytime they’d give him his pain meds. I thought he’d be stuck there forever. Come Friday December 2nd, he finally started eating, not his normal amount but it was a start, and he was finally peeing. Saturday morning when the doctors came to check on him, I told them he was having dirty diapers and eating ok they said they would let us take him home since he was able to open both his eyes. His head is already looking so much better. He is recovering well and is his happy hungry self again.