Oliver’s Story - Congenital Diaphragmatic Hernia (CDH)
Our son Oliver was diagnosed prenatally at our 20-week anatomy scan with severe left-sided Congenital Diaphragmatic Hernia. On April 7, 2021, we gave birth to him at the Children's Hospital of Philadelphia.
He was immediately taken to the NICU and intubated at 4 hours of life. He was then placed on ECMO, where he remained while he had his CDH repaired on April 21, 2021, and was finally removed from ECMO on April 27. Unfortunately, Oliver struggled after his repair surgery. He got three infections due to his GORE-TEX patch they used to repair his diaphragm, had several chest tubes placed, and multiple PICC lines. He was also on an oscillating vent three times. He was on so many drugs, from sedatives to pain medications, that he became delirious, for which he then had to be treated. The last time he got sick with an infection, we had a family meeting, and they told us that if he didn't get better, there was nothing else they could do for him because he was maxed out on every sedative and pain medication, as well as his vent settings. Not even a couple of days after that meeting, I had been praying as hard as I could for Ollie when he started feeling better!!
From the moment Ollie could open his eyes, he stared at the left and right corners of his NICU room, and he would just smile when he could. My husband and I have always said he sees his brothers, sisters (in heaven), and his guardian angels watching over him (he still does it). They were finally able to start weaning down his vent settings, and we got to a point last August where they wanted to trial-extubate him to a BiPAP machine. Right before this, he had been on three pulmonary hypertension meds, one of which was Remodulin which they weaned him from a couple of weeks prior, but he did ok. Once they extubated him the first time, he did well for about five days. On day 5, he was working so hard we decided to reintubate, and he immediately was back to himself and smiling, and he was our Ollie. They decided to restart the Remodulin subcutaneous, and after about a month of him being back on the Remodulin, he was able to be extubated again to BiPAP. He did so well with that. They were able to wean his BiPAP settings enough to be on CPAP 24/7. Then about a month ago, they wanted to trial 2 liters of oxygen during the day and have him on BiPAP at night to rest. He has done absolutely amazing with both, he is now down to 1 liter of oxygen during the day, and he has a GJ tube.
We have been here in Philadelphia going on one year. He will be one on April 7, 2021. All the appointments we went to at CHOP while I was pregnant with Ollie could never have prepared us enough for all we went through and what we would see Ollie go through. From him being so little, with so many tubes and IVs hooked up, to him now, where all he wants to do is play and laugh! He is our little warrior and so very smart. He can give a high five, clap, and sit up all by himself. He is the happiest, sweetest little boy in the world. He has been through so much in his short life here, and he is the absolute strongest baby!!
We still have a long road ahead, but he is absolutely amazing, and like everyone who has ever met him has said, he will do great things in this life. He is our rainbow baby and our little miracle!
