Q&A with Mom on James - Diving into BPD

𝗤&𝗔 𝘄𝗶𝘁𝗵 𝗠𝗼𝗺 𝗼𝗻 𝗝𝗮𝗺𝗲𝘀

I decided to post some of the questions that friends and family have been asking about James. I've been told my answers helped them understand what's going on. Feel free to ask me anything! 😁

𝙒𝙝𝙖𝙩 𝙖𝙧𝙚 𝙩𝙝𝙚𝙮 𝙨𝙖𝙮𝙞𝙣𝙜 𝙖𝙗𝙤𝙪𝙩 𝙝𝙞𝙨 𝙗𝙧𝙚𝙖𝙩𝙝𝙞𝙣𝙜 𝙩𝙪𝙗𝙚? 𝙒𝙝𝙚𝙣 𝙘𝙖𝙣 𝙝𝙚 𝙜𝙚𝙩 𝙩𝙝𝙖𝙩 𝙤𝙪𝙩?

James had to get a tracheostomy since he born so early (at 26 weeks) his lungs were barely developed yet. The ventilator kept him alive, but it also caused lung damage (makes really thick lung walls), which then caused him to stay on the ventilator, which again caused more lung damage. It's a catch 22. 

Fun Fact: We develop more air sacs (alveoli) in our lungs as we grow (up to age eight). So everyday that James gets bigger and stronger, his lungs are also developing healthy parts too. 

On average this takes about 2 years to get off the ventilator and 3 years to get decannulated (get the trach out). At that point James will join the "naked neck club". Eventually after that he will get out his GJ tube removed and be completely free of all tubes and wires! 

𝙒𝙖𝙨 𝙩𝙝𝙚𝙧𝙚 𝙖𝙣𝙮 𝙬𝙖𝙮 𝙩𝙝𝙚𝙮 𝙘𝙤𝙪𝙡𝙙 𝙝𝙖𝙫𝙚 𝙖𝙫𝙤𝙞𝙙𝙚𝙙 𝙩𝙝𝙚 𝙡𝙪𝙣𝙜 𝙙𝙖𝙢𝙖𝙜𝙚?

He was born 1lb 4oz, actually measuring and weighing like a 23 weeker! Lungs go through 5 stages of development and at 23 weeks the lungs are just beginning the 3rd stage, the growth of the capillary network, which provides oxygen to the bloodstream. That's why most 23 weekers and earlier don't make it. Because there is no way that the lungs are getting oxygen, since there are no capillaries. James just made it! (In fact, he surprised all the doctors!) He was immediately intubated with an ET tube (through his mouth) when he was born and had that for 3 months. Mechanical ventilation could not be avoided because it's was what was saving his life.

The lung damage is a result of using high pressure ventilation and having oxygen toxicity. But it was completely necessary for him to survive. Back in the day these micro preemies would not have survived. Now they can, they just have to go through a few years of life with a bit of help. 😊 

𝙒𝙝𝙮 𝙬𝙖𝙨 𝙝𝙚 𝙗𝙤𝙧𝙣 𝙨𝙤 𝙚𝙖𝙧𝙡𝙮?

So it was not his decision! I did not go into labor. I had an emergency C-section at 26 weeks, because my kidneys were failing due to severe preeclampsia. James would have been perfectly fine inside for another 3½ more months. 

𝘼𝙧𝙚 𝙩𝙝𝙚𝙧𝙚 𝙨𝙪𝙥𝙥𝙤𝙧𝙩 𝙜𝙧𝙤𝙪𝙥𝙨 𝙤𝙣 𝙁𝘽 𝙨𝙞𝙢𝙞𝙡𝙖𝙧 𝙩𝙤 𝙅𝙖𝙢𝙚𝙨’ 𝙨𝙩𝙤𝙧𝙮 𝙖𝙣𝙙 𝙝𝙖𝙫𝙚 𝙮𝙤𝙪 𝙟𝙤𝙞𝙣𝙚𝙙 𝙩𝙝𝙚𝙢?

Yes, I'm in several trach and G-tube groups! They are super helpful and supportive. Some of the most knowledgeable medical mamas I know. They have helped me make medical decisions and always know the best tricks and tips. When you need to talk to someone, you need to relate to them.

I will say sometimes it is hard to see babies pass away in the trach group (on avg 1-2/day), it is also a reminder to enjoy every second he is here with us. James' future is bright, but he is still on a life sustaining machine working really hard. It's important that we are always on high alert and that he has 24/7 supervision. 

𝙃𝙤𝙬 𝙙𝙤𝙚𝙨 𝙅𝙖𝙢𝙚𝙨 𝙚𝙖𝙩?

James currently does not eat by mouth. Not yet! James has a G-J tube and is still on breast milk (I pumped for 8 months in the hospital)! A G-J tube is a single tube that passes through the abdominal surface, into the stomach and down into the second part of the small intestine. Since he is on such high ventilator pressure, he could asiprate easily if we fed him by mouth. Eventually he will get a swallow study done once his PEEP pressure is lowered. Then we will start with purees! 

𝘿𝙤 𝙮𝙤𝙪 𝙖𝙡𝙡𝙤𝙬 𝙫𝙞𝙨𝙞𝙩𝙤𝙧𝙨 𝙤𝙧 𝙞𝙨 𝙅𝙖𝙢𝙚𝙨 𝙞𝙢𝙢𝙪𝙣𝙤𝙘𝙤𝙢𝙥𝙧𝙞𝙨𝙚𝙙 𝙨𝙪𝙘𝙝 𝙩𝙝𝙖𝙩 𝙮𝙤𝙪 𝙩𝙧𝙮 𝙩𝙤 𝙡𝙞𝙢𝙞𝙩 𝙛𝙤𝙡𝙠𝙨 𝙘𝙤𝙢𝙞𝙣𝙜 𝙤𝙫𝙚𝙧?

We are definitely welcoming visitors! It's really important that James get social interaction. He met a ton of nurses, doctors, and respiratory therapists in the hospital! We want him to meet his family and close friends too. That being said, obviously with any baby, if you're sick please don't come. And no surprise visits! 😆 And wash your hands! Duh. 🧼 I think that's it. No mask or vaccine required. 

𝙃𝙤𝙬 𝙙𝙞𝙙 𝙅𝙖𝙢𝙚𝙨 𝙜𝙚𝙩 𝘽𝙋𝘿? 𝙒𝙝𝙖𝙩 𝙙𝙤𝙚𝙨 𝙩𝙝𝙚 𝙫𝙚𝙣𝙩𝙞𝙡𝙖𝙩𝙤𝙧 𝙙𝙤?

It is not something he is born with. It's caused by ventilators and being on oxygen. He was simply born too early and his underdeveloped lungs needed support. For James, the ventilator provides pressure support to help keep his lungs open. He is on very little oxygen (.5 liters) which is excellent! 

𝘿𝙞𝙙 𝙮𝙤𝙪 𝙠𝙣𝙤𝙬? The strongest risk factors for Broncopulmonary dysplasia (BPD) are prematurity and low birth weight. Almost 80% of infants who are born at 22–24 weeks of gestation are diagnosed with BPD, whereas only 20% of infants born at 28 weeks of gestation develop BPD. 

As technology advances more and more micro preemies will survive, with BPD. Understanding the 5 stages of lung development is the first step. For more info, please use the search bar at the top of this blog where I have shared BPD related YouTube videos and links.

𝙅𝙖𝙢𝙚𝙨 𝙞𝙨 𝙖 𝙢𝙞𝙧𝙖𝙘𝙡𝙚 𝙗𝙖𝙗𝙮! 

Not many people know, but the day before James was born I met a Nurse Practitioner whose job was to explain the NICU. She spent an hour going over expectations and concluded her message with, "I just want you to know, I don't think he will make it". Crushing to hear before you go into surgery, especially when we just experienced loss the year before. It wasn't until Day 30 the NICU Director gave us hope. She sat us down with tears in our eyes and said, "I'm not supposed to tell you this, but I really think he is going to make it. He is feisty and that's a really good thing". Well here we are Day 307, the baby that once fit in the palm of our hand is still feisty and doing great! 😁😭😍