Hello, friends and family. Hope you are all doing great. We have been getting many emails and texts and phone calls the last few days asking about Oakes, so we wanted to get an update to everyone.
Oakes has now been home for almost three weeks and things have settled down quite a bit from when he first arrived. A nurse is visiting us twice a week to check in on the little man and he continues to check out well during each visit. Really the only issue she’s noticed is his cry. Becky calls it more of a purr, almost like a cat. It’s this really cute sound that you have to laugh at when you hear it. He wants to make a mighty yell, you can tell, but he’s struggling to build up his vocal chords, probably a byproduct of the tracheal surgery that we were warned about.
He has been eating – Oakes has gone from eating half of a 50 mL bottle of milk (the other half having to be given to him via the feeding tube) to now consistently finishing most of an 80 mL bottle every three hours or so. He’s been gaining weight and is closing in on 8 pounds now, which is great. Early on, we were having quite an issue with vomiting, but that’s only happening about once every other day at this point.
We’re still on the oxygen which has been a pain, especially when I’m working and Becky is trying to control Isla, who is entering her “terrible 2s”, while keeping Oakes happy. Running a simple errand is now not so simple since we have to switch Oakes’ oxygen tubes from the rolling oxygen machine in the house to portable oxygen tanks to take with us. We’ve walked to dinner a couple times with Oakes and he’s done pretty well.
Since our last update, Oakes’ has been allowed to stop all of his medication except his reflux medicine. That means that his potassium and calcium levels have straightened out, which is also good considering the doctors weren’t sure why his levels were high as he was discharged from the hospital.
I mentioned a follow up surgery in my last email and that is now scheduled for May 4th. They’ll put Oakes to sleep with anesthesia and to a “bronchial” exam to check how the trachea and surrounding area has recovered. This involves putting a tiny camera down his throat, similar to what was done during his first surgery. Hopefully no repair work this time; just observation. Not sure what they’ll find considering his weak cry. They will also be sending a catheter through his leg to the tiny spot above his heart where they connected one of his defected blood vessels to the cadaver blood vessel (which created his pulmonary artery). If you recall, the doctors believe it is this connection point which is causing his oxygen levels to drop below comfortable levels from time to time. The procedure they’ll do will hopefully relieve the “congestion” that they believe is the main cause. This is a huge deal obviously, so we’re again very humbly asking for prayers and thoughts to stay with our Mighty Oakes.
About two weeks ago, we received word that Oakes’ “microarray” genetic test all came back normal. This was the last of the genetic blood tests that the doctors requested about a week after Oakes was born. It’s certainly good news, but we’ve been let down before by test results that we thought were 100% conclusive only to find out there were many more tests to be run. I suspect there are other tests to check other things, especially when I read all of the caveats on the test report they sent us. Again, I think this is a situation where we may not know for months what, if any, other issues exist. Our fetal cardiologist, Dr. Caroline Lee, has been amazing to us throughout the entire process. She has told us that she believes the geneticists have been a bit too assumptive (my word, not hers) with their feedback to us and that it’s probable that they are looking for something that isn’t there. This is good to hear obviously, but we are hoping and praying for someone to simply tell us that everything about his physical and mental development will be perfect. We know this won’t happen, but it’s just where we are with this.
The absolute outpouring of amazing kindness and generosity has been overwhelming. It’s really humbling to understand the network of friends and extended family that has developed in our lives over our 36+ years. I, for one, have been taking it for granted all of these years and I’m sorry it’s taken our little Oakes’ heart surgery to really paint the picture of how many people we have in our lives who care about us. I’d be remiss if I didn’t specifically thank my sister, Shani, and her husband Jamie and their daughter, Harper. Somehow, Shani drove down from Des Moines a couple weeks ago and spent Sunday to Saturday with us, strictly to help us out. She was able to take off work the entire week and left Jamie fending for himself with the energetic Harper. She was incredible – running errands, changing diapers, feeding babies, cooking dinners, doing laundry and just being a good sounding board to Becky. I love my sister and we cannot thank her enough. It was tough seeing her drive away…..I’m in the process of drafting an offer letter for her full-time services and to see if I can coax her to move to St. Louis. Sorry Jamie! J But seriously, we continue to be grateful for everything everyone has done for us throughout these six weeks (yes, Oakes was born SIX weeks ago tonight!).
We’ll look to provide an update probably after Oakes’ May 4th surgery. In the meantime, I’m off to clean a few milk bottles….
Happy Easter and Love,
Greg, Becky, Isla P. and Mighty Oakes