Running Ragged

I should have started this blog long ago, but I didn't. I should have, but something prevented me from doing so- whatever that something was, I do not know it's name. Either way, here I am trying to piece together the past almost six months into a coherent face for you all who are reading.

From the very beginning, Silas had struggles with breathing, body temperature regulation, feeding, blood sugar levels, and movement.

We knew when he was in the nursery, before moving the NICU, at the hospital that his kidney was dilated and he had GERD. He has had three ultrasounds on the kidney and a barium swallow test for the GERD. He sees both a urologist and gastroenterologist for the GERD and hydronephrosis.

He bounced between NG tube feedings and syringe feedings two or three times before progressing to taking food by bottle. Even after he was home from the hospital and gaining weight, he did not progress to latching at breast the way we assumed he would. Six weeks came and went with no progress. We saw an ENT for a possible tongue tie, a P.T. for a possible torticollis affecting his ability to position properly. He was miserable. It was not until he was three months old that he was able to breastfeed and that came about because he striked his bottles and we landed in the hospital for dehydration monitoring. I firmly believe if that had not occurred, we would not be breastfeeding today. I am so grateful for the Lactation Consultants locally who worked with us to get Silas where he needed to be. They offered countless hours of encouragement, support, and never gave up on us, even when every thing we tried seemed to be another dead end. We finally got there, and when we did, we had a whole team of people celebrating with us!

Suck, swallow, breathe- some of the most vital abilities a baby needs and my son couldn't coordinate them well at all in those first weeks. The NICU provided him with proper training to regulate his swallowing and sucking, but the breathing part was something he couldn't be taught. So, we worried and watched round the clock to make sure he didn't show any signs of breathing difficulties. Those first few days at home with him, I was on the NICU phone line with a nurse daily. Something about having a NICU baby makes you feel like a first time parent all over again. We finally grew past these difficulties around 6 weeks and boy did I feel good about that.

Since birth Silas has had tremors in his arms and legs. We knew these were neurological symptoms, but had no idea what they pointed to. This has continued throughout his infancy. We see neurology later this month for a consultation. More on that later.

Silas also has had severe delay from birth onward. At first we thought it was just him being a little early but when all our attempts to get him nursing failed and his stiffness, morrow reflex, and tremors did not subside we were referred to a wonderful occupational and physical therapist for intervention. Physical therapy has been a God-send. Silas was very behind when he began meeting with Renee. Thankfully now, almost three months  later he is current on most of his age-adjusted milestones.

My weeks are slammed with Dr visits of one kind or another. I always feel like Im stretched so thin the holes are beginning to show. My hair is a mess. My clothes are wrinkled. My eyelids are so droopy I could trip over them, but I am doing what is best for my baby. I am being his advocate and getting him the help he needs.Dont ever give up on your child- you are the only voice they have.