It was the day before Halloween, October 30th, 2011, and I was very excited to get to the hospital to show baby girl her first Halloween costume.
I arrived early, as usual. Baby girl was still asleep.
I loved watching her sleep. I loved being there when she woke up.
I noticed that her trach area was smelling rather cheesy so I let the nurse know. I also noticed her secretions were yellow and a bit bloody, so I took a sample and the nurse sent it to the lab.
The docs started a round of antibiotics as they suspected a staphylococcal infection, a bacteria which baby girl had a tendency to grow and was easily susceptible to.
This infection caused baby girl to need a bit more oxygen so it was bumped to 45% to keep her sats high and prevent her from working harder to breathe. The doctors also decided to give her some Ventolin as needed, as it seemed to help with the tightness and wheezing in her chest, as well as help loosen up the sticky secretions.
I was relieved that she was not struggling to breathe and that she was battling the infection without major complications.
Once again, I felt the urge to have her home.
I kept thinking about how vulnerable she was in the hospital to catching infections. This was the fourth time she had caught this same bug. So many nurses and doctors coming and going each day…I was anxious to get her away from such exposure and get her home, where she should be.
In my efforts to push for my baby girl’s discharge as soon as possible, I discovered that the system, as usual, is slow and in this case, not prepared for discharging preemie babies quickly. Which meant I had to follow up on the doctors and discharge team daily and make sure they were getting things done.
At times it felt as if they were trying to keep my baby girl in the hospital for as long as they could instead of help to get her home as soon as possible. I always felt that I had to fight to get her home. It shouldn’t have been that way, but it was. And I had learned to handle that by then.
I was nearly ready for my baby girl to come home on my end. I had completed the trach training course as well as the Infant CPR Training. I had selected the company that was to provide us with the home oxygen equipment. I had posted the ads for night time caregivers and was screening and interviewing.
All I had left to do was complete the hiring of the caregivers and complete the home visit with the Respiratory Home Care team to ensure we met all the safety criteria at home.
I would have all that completed in less than a month. I kept reminding the doctors that I wanted my baby home for Christmas.
As always, they kept trying to slow things down. They said thatl now that she was a little sick we would have to stop the sprints off the CPAP machine. This was a typical reaction from the doctors…each time there was a change, they wanted to go 10 steps back and hold any progress.
I was used to their way of thinking by now so once again I reminded them that we would let baby girl determine what she can and cannot tolerate. I knew she needed to be completely off the CPAP in order to go home, so I told them that as soon as she was better we would continue the sprinting right where we left off.
Baby girl had been successfully doing 2 four hour sprints a day. I wanted to get her to do a full 8 hours so that we could start our day passes while we finished getting her discharge all set up.
In the meantime, I was happy to see baby girl active and playful. It was almost as if she knew she had more important things to do besides being sick. Like celebrating Halloween!
And she was right. We were going to enjoy her first Halloween no matter what.
I decided to stay with baby girl overnight, as I always did if she wasn’t feeling 100%. I always felt that my being there to comfort her helped her heal better. Besides, I loved spending as much time as possible with my baby girl.
By morning she was already feeling a lot better. Her oxygen was back down to 35% and her secretions were less sticky and yellow.
I was very grateful because baby girl had always responded well to treatment and medication. Her tiny but mighty body had always fought off the nasty bugs quickly and efficiently.
Besides, it was Halloween and there was no time to be sick. It was time to get dressed up.
After Halloween, baby girl completed her round of antibiotics and was fully healed from the infection. And yes! She was now successfully able to sprint for 8 continuous hours off the CPAP machine!
This meant we could request day passes to take her home for 8 hours. All we needed to do what complete the home visit on November 8.
Little did I know that I would forever remember that day as one of the scariest moments of my life.
The day of the home visit, I went to the hospital first thing in the morning as usual and I let the nurse know that I would be stepping out for about 2 hours at the most, because I had the home visit at 11 am.
I left baby girl all cleaned up, fed and napping.
I got home and met with the home care visit team. Half an hour into the meeting I get a phone call from the hospital. As always, My hearts starts immediately racing because I know something bad happened each time they had ever called me.
Unfortunately, this would be not the exception.
Baby girl had her first Code Blue ever. She had stopped breathing. My heart stopped.
They had managed to resuscitate her and she was now stable.
I rushed to the hospital.
When I arrived, my baby girl was sleeping. The nurse, the respiratory technician and the doctor where there.
I asked them what type of HME because we had done previous trials and she could only handle the Neonatal Hygroscopic Condenser HME but not the Swedish Nose HME. There a very significant difference between the two in size. The last time we had tried the Swedish Nose HME she wasn’t able to breathe well with it as it is a larger HME and it was determined that her her lungs were not strong or big enough for it yet.
When they told me they had put the Swedish Nose HME I lost it. I couldn’t believe they could make such a mistake at the hospital. They gave my little girl a Code Blue!
The first and only one code blue she would ever have and it had been caused by one of her doctors. I was livid.
I also couldn’t understand why they would do that during the 2 hours I was gone. I had always left explicit instructions that I was to be present when those types of trials and changes were made.
I was at the hospital every day from morning until night.
Why would they do this during the 2 hours I was gone!
They had not only failed to tell me they were planning to do that, but also made the unacceptable mistake of not reading her file and using the wrong HME.
I got apology after apology. I no longer cared what they had to say.
The thought of my little girl struggling to breathe because of a device a doctor had put on her made me sick to my stomach. The thought of her having to be resuscitated because of a human error made me angry in a way I never knew I could be.
I consider myself a very reasonable, understanding and forgiving person.
At that moment, I was none of those things. I let the doctors and the staff know exactly how I felt.
I told them I prohibited anybody from carrying out any sort of trial or changes to my little girl if I was not present.
I told them I had lost trust in the hospital staff. There had been too many careless mistakes…the IV burn to her foot, the nurse forgetting to strap her into her chair causing her trach to fall out and now a code blue caused by one of her doctors using the wrong HME on her.
That was completely unacceptable. That could have cost my baby girl her life.
I asked everyone to leave her room. I wanted to be alone with my baby girl.
I held her until she woke up.
I told her how sorry I was that she had to go through that.
I promised her that I was going to get her home as soon as possible.
She looked at me and my heart filled with gratitude.
Her eyes always had a way of reminding me of what really mattered.
Right now what mattered was that my baby girl was happy in my arms and staring up at me with her big brown eyes.
She had been through so much and yet she had the brightest and happiest spirit of anyone I had ever known.
She was so strong. She never ceased to amaze me.