Raising Resco

I want to say before starting this post, that some of it may be very hard to read, please stop reading if you need to. Our 25 day stay in the NICU is as follows..

Right after Crew was born, he was having some difficulty breathing, they decided it was best to put him on oxygen. Now I cannot remember all of the different types of oxygen that he had, as they had tried multiple strengths and kinds throughout his stay. I do know that he had to have a pretty high concentrate of oxygen that had added humidity (Nurses if i’m wrong please correct me). This was to help clear his airway and get him breathing at 90% (according to his little monitor) or better. Again I am not for sure of all the medical terms, but I do know that monitor was something I constantly stared at for our whole 25 day stay.. It was our lifeline.

Crew was doing great for the first couple of days!! He was only taking feeds through a feeding tube, until we got his oxygen situation figured out, but he was keeping all of his milk down! We used generous donor milk while I worked to get my own flowing (haha) because I was induced so early. But it wasn’t more than a day or two before he was using only mine! Mom WIN! And now after 6 days of strictly tube feeding, we got to try bottle feeding (we chose not to breastfeed because it caused his oxygen to drop each time we had tried)!

So remember how I said that monitor got started at all the time?? This is where that came in… Each time we fed Crew by a bottle, we had to watch the monitor to make sure his oxygen didn’t drop below 79%. This meant that Crew was only breathing 79% of the oxygen that he needed. Let me remind you, that he was still on oxygen and it stayed in 24/7. Down below is a picture of what we would look at on the screen while feeding, sleeping, awake, pretty much all the time. It honestly became a bit of an obsession for me because it constantly alarmed and I had to jumó up to reposition him, suction out his nose, or tilt him up vertically in my arms. Black means he’s above 79% and breathing fine, Yellow means below 79% but still okay just stop feeding and let him catch his breath, and Red means NURSE. Nurse as in “COME RUNNING!” Keep in mind this little bar is only roughly 30 mins of time, so you can see he was constantly “alarming”.” Feeding him was difficult and very hard emotionally watching him choke on his bottle, we decided to go back to tube feeding, which put us farther away from going home but we needed to do what was best for him.

At the hospital, there were 3 Doctors, 3 Nurse Practitioners, and lots of nurses. They would all do rounds in the mornings and the nurse practitioners who were on call the night prior would update the doctors outside each room and then they would all talk about the plan for the day/days ahead.

Our plan had been: get off oxygen, and keep tolerating feeds for the first 2 weeks or so. No one was creating a plan to figure out why he wasn’t able to breathe without oxygen, we just kept getting told “he’s a premature baby, his lungs need to develop.” Rayden and I were starting to feel like this was not the reasoning behind it, as we had been suctioning big sticky mucus out of Crews nose! Was our baby sick??? Each time we brought it up to a nurse they would just say it’s normal. Until one nurse, our FAVORITE nurse, Kara came along!!! She kept bringing it up to the nurse practitioner and kept helping/encouraging us to advocate for Crew and get them to listen to our concerns.

Rayden was still working at this time, driving almost 2 hours one way to work, working 10 hours, and then another 2 hour drive back to the hospital, bless his soul! He was/is the best daddy to our boy! So keep in mind that I was alone with Crew most of the time and I could not for the life of me get someone to listen to my concerns!! I finally got upset (yelled a little) with the nurse practitioner one night and she finally talked to the doctor that was on rotation that week, Dr. A. The next morning he came in to look himself.

Dr. A did a quick exam of Crew and said that nothing looks concerning, besides his breathing. I voiced that we had been getting the most mucus out of his right nasal canal and that I thought the problem was there. He quickly expressed that he would use another feeding tube and pass out through his right side to maybe clear out whatever blockage he had. He gathered the supplies and started threading the tube through his nose. Crew was instantly in distress!! STOP!!! Dr. A was only able to get the tube in about 14 mm instead of the 24-27 they needed to get to the stomach. He decided to tape the tube where it was at, and bring an X-ray machine down and see where the tube had stopped.

It wasn’t more than 5 minutes before the X-ray machine was inside our room. I kept thinking, FINALLY someone is getting this figured out!! They snapped a quick picture of his face and found that the feeding tube in the right side of his nose, was curled up inside his nasal cavity and it would not pass through. They quickly removed the feeding tube on the right and called in a ENT (Eat Nose & Throat) Specialist.

Side note: Do NOT ever feel bad for advocating for your child!!! I always feel bad for upsetting people or “being mean,” but if I wouldn’t have gotten angry with that nurse practitioner, who knows what would have happened!

The ENT came in the next day and did a scope on the right nasal cavity of Crews nose. She said she saw either an atresia or a stenosis of the right nasal canal, otherwise known as Choanal Atresia or Choanal Stenosis). That meant either there was only a small hole or no hole at all through the right nasal canal and he could only breath out of the left side of his nose. There was so much mucus coming from the right side, because there was no way for it to naturally drain down the throat. Finally a diagnosis… but what came next was totally unexpected.

Dr. A came in and said since Crew had two symptoms that occur in multiple genetic disorders, that they needed to check his heart, kidneys, liver, and eyes (more thoroughly) AND refer us to a Genetic Specialist. But wait… two symptoms??? He only has a nose issue, what else was he talking about?