After spending 10 days in the hospital we finally have an answer: cancer. Out of all the possible answers, this was certainly not the one I wanted to hear.
We brought Sam to our pediatrician's office for a simple weight check last Tuesday. He was three weeks old and was still trying to regain his birth weight. Every feeding session was a challenge. I would have to wake him up, most likely he would wake up hangry, and we would have to feed him about 30mL of milk from a bottle to settle him before trying to breastfeed him. More often than not I would have to continually stimulate him during the feeding to keep him awake enough to spend 15minutes on each breast. It was exhausting. But he was a newborn and we were both supposed to be exhausted, right?
I saw a lactation consultant the end of the first week home with him, and again a week later. She assured me that he was receiving about 1oz of milk with 15minutes of feeding. Perfect. After two weeks his weight was slowly recovering, but he still hasn't reached his birth weight so I asked for another weight check appointment.
At the weight check his doctor commented on how noisy his breaths sounded. His lungs were clear so initially he thought he just needed some saline drops in his nose, but during the visit Sam got really upset and was struggling to breath. He was pulling his ribs in with each breath. I learned that day that babies aren't suppose to breathe like that. Who knew? We had mentioned the grunting to other providers and they all said he was fine so we didn't think anything of it. Well this time they didn't tell us he was fine. Our doctor asked an NP to come in. She asked the oximeter tech to come in and with her came the lead doctor at the practice with her medical student. They told us we would need to go to the ED...and they would call an ambulance for us...and of course the firefighters would show up first per protocol.
They bundled Sam into his carseat them strapped him to the adult stretcher. We zoomed though the busy streets and arrived safely at the hospital.
The Ed doctors thought it was possibly an infection causing his distress. He had blood drawn and sputum collected. The nurses placed two iv and he needed an oxygen mask.
I tried breastfeeding him but when the nurse and doctor heard him trying to breathe and drink milk at the same time they decided it would be safer for him to get a small feeding tube through his nose.
That was night one. Started at 2pm and maybe I closed my eyes by midnight. I spent the night on a recliner in a lactation room that they hadn't quite finished.
The next few days blend together. He had an ultrasound of his heart that was normal. They put a scope down his nose and looked at his larynx which was normal. They put a scope down his throat to look at his lungs which was normal.
On day 7 they gave him some dye and watched on radiographic film where the liquids went when they put it in his mouth. The liquid went into his lungs. ..so he needed to keep the feeding tube in.
The next night they did a sleep study. They hooked him up to monitors for his heart, lungs, and brain. They monitored his eye movement while sleeping and recorded him sleeping. The sleep study showed that there was still something obstructing his airway so they put him on a small amount of oxygen support to keep his airway open.
This finding prompted them to repeat the upper airway scope. This time they saw something. A slight asymmetry in his airway. The next step was to get a brain and neck MRI. That was done on day 10. They intubated and sedated him for the procedure. The intubation is to protect his airway from the compression caused by the tumor. His lungs work fine.
Although it was a Friday evening, the team moved mountains to get work done over the weekend.
Here I am on day 11. They just finished taking biopsies, taking bone marrow and putting in a central line for chemo.
Here we go.
