Porter’s story is going to be a bit more lengthy than Winter’s. I’m going to split it up into 3 parts so bear with me.
After determining that Porter hadn’t grown in more than two weeks, the decision was made to have a c-section to get him out into the world to get him the help he needed. He was born quickly and came out with a cry. I hadn’t expected to hear him cry, but was so glad he did. He needed CPAP for a short while, then a nasal cannula. He had a line inserted into his belly to give him nutrients because he was too tiny to try to eat. Like his sister, he was jaundice and couldn’t maintain his temperature. He also had borderline low blood sugars, an issue that remains today. Porter had far more ups and downs than we expected. We would take two steps forward, and one step back.
The first real scare was when they thought he might have NEC (necrotizing enterocolitis). He had some bloody, mucousy stools. They stopped feeding him, hooked him up to an IV, began a 7-10 day course of two antibiotics, took blood for tests and a culture and spinal fluid was taken for a culture. I was called around 2am to be told all of this. It was the only time we received a middle-of-the-night call from a NICU doctor. I googled NEC which was a terrible decision. I went to the hospital to meet with the doctors and nurses and to sit by Porter’s bedside. It was incredibly scary and I lost my shit. Thankfully, some of our favorite staff were there with me and we hugged and cried and they forced me to drink water. He spent 4 days without food, his only nutrients were through an IV.
Porter was anemic from birth. At one point his platelet count was pretty low, 45k, when it should be between 150k-450k. This freaked us out as Kyle had a blood disorder when he was a child. Porter had a very pale appearance most of the time. His blood work showed that his body was working hard to replace the blood cells that die off after birth, but it wasn’t working quickly enough. We decided to give him a transfusion. When a transfusion is done, it stops the body’s natural process of rebuilding cells, so we waited as long as we could before doing the transfusion. Luckily, it helped.
His alkaline phosphatase was elevated, which meant that his bones were in danger of being fractured or broken easily. The hospital had to take precautions so that everyone knew to ‘handle him with care’.
His blood sugars were low. We tried to control them with food, that didn’t work. We tried feeding every 2 hours, we tried continuous feeding, we tried fortifying his food to have extra calories but nothing worked. We had to start him on a medicine called diazoxide. It helped to maintain his sugar levels, but made him retain fluid. He started to sound congested because there was so much fluid built up in his face and nasal cavity. He started to not be able to eat the volume he was previously eating. He was so swollen. Eventually he was started on a diuretic to reduce the fluid retention, but we were never able to fully get rid of the congested sounds. He really struggled with his bottle feeding once he started the medicine. The inflammation and fluid retention in his nasal cavity was so bad that we removed the NG tube since it was just taking up more room. He was able to take ‘enough’ food by mouth though we wish he could’ve been drinking more. He was diagnosed with congenital hyperinsulinism, basically his body produces too much insulin and in turn his blood sugars are too low. Our hospital isn’t very familiar with this particular issue so things were probably not handled the way they should have been. This is Porter’s biggest issue today. He is still on the medicine and could be for some time. It’s hard to tell. We expect he will ‘outgrow’ the issue but there are no guarantees.
Porter developed hernias from his belly down into his scrotum that had to be surgically repaired. This was the last step before he could come home. The surgery was performed on May 12th. Porter was discharged two days later.
We had hoped this would be the last of our NICU days. We were wrong.
To be continued…