There’s no place like home

It was Friday, November 25, 2011.

On that day, Miss Malena Lola was turning 7 months old, and weighed 5.2 kilos – 11.5 lbs.

That was a long way from the 715 grams – 1.6 lbs she weighed when she was born.

It was along way from the NICU days when she needed an ET tube and a ventilator to breathe.

It was a long way from the days when she needed an NG tube to feed through her nose.

Today baby girl was able to breathe on her own, and only needed 2 L of O2. She was able to breastfeed on demand and was thriving in every way.

Today baby girl would get to leave the hospital and go home for a day visit for the first time in her tiny but mighty life.

I arrived to the hospital very early that morning, at around 6 am. I  wanted to have baby girl on the way home as soon as possible.

I did her trach care, fed her and changed her.

Loaded up the car in the meantime with baby girl’s oxygen tanks, suction machine, emergency kit and medications.

Then signed the forms that authorized me to take my baby girl home for a day pass. Her nurses and docs came by to wish us well.

We quickly said bye and headed out. We didn’t want to stay in that hospital once second longer than we had to.

Baby girl was really excited, she loved sitting in her car seat and going for a ride in her stroller.

I remember feeling such pride and joy walking out of the hospital with my baby girl. And most of all I felt so lucky, so grateful.

I had been waiting for this moment for so long…I couldn’t believe it was finally happening.

I remember feeling so aware of every instant of that moment, feeling so present. Every cell of my being was rejoicing.

Every little detail felt magnified by the divine grace of that moment.

Baby girl was in such wonder, she big brown eyes were bigger than ever.

When we placed her car seat inside the car, she kept staring at everything.

It is always amazing to look at the world through the wonder of a child’s eyes.

I will never forget the feeling of watching my baby girl look out the window while we drove home. She was fascinated!

I will never forget the feeling of bringing my baby girl into her home for the very first time. It was a moment I had been anticipating for a long time. For exactly 214 days and nights.

I felt so grateful. I felt so fortunate.

As I watched my baby smiling and sitting in the middle of our living room, I knew I was experiencing a miracle.

I remember sitting there just watching her, just enjoying having her home. I cried.

I knew how lucky I was to be able to have my former 25 week micro preemie baby girl home. I knew how lucky I was to have my tiny but always mighty baby girl thriving.

She had made it out of the hospital.

This was a day to remember. This was a day to not only count my blessings but to celebrate my blessings with all my heart and soul.

Baby girl spent the day at home and then went back to the hospital to spend the night.I hated having to take her back to the hospital. It felt wrong.

It felt right for her to be home at this time.

The doctors were afraid of letting her spend the night at home so fast. I wasn’t.

I knew what I had to do.

The next day I spoke to her main doctors and told them I wanted to take her home overnight.

Of course at first they said not yet, but I asked them why and they did not have an answer that made sense. Their answer was basically that they were not used to moving that fast and that it would be better to do a few more day passes before we tried a night pass.

I said that answer was simply not good enough.

I didn’t care what they were or weren’t used to. My baby girl had no issues during her day pass and she had met all the criteria for discharge. There was no need to keep her in the hospital overnight. I was going to take her home.

The doctors said I would have to sign a waiver indicating that I was willing to do this without their consent, and I said where do I sign.

That night baby girl was home. I stayed up all night just watching her sleep.

It was a magical night. Her first night home. Magical.

The next day we took her back to the hospital in the evening, that was the agreement with he doctors.

It never ceased to baffle me the fact that the doctors were so afraid to allow a baby to be home. It felt as if they had lost sense that a baby is supposed to be home. That is their natural habitat. And yes, this very preemie baby girl had needed to be in the hospital for nearly 8 months, but she was ready to go home. And it was time the doctors realized that and let go.

I remember having to have several conversations with the team of doctors and other hospital staff about baby girl’s discharge date. They all seemed unwilling to set a date.

I told them if they were not willing to set a date then I would, and I did.

I told them our night time caregivers would be ready to start working on Wednesday, December 14, so that would be baby girl’s discharge date.

I told them everything was ready on my end, so they better get everything ready for that date.

My baby girl had fully met all the medical criteria for her discharge. My baby girl was going to spend Christmas at home.

The time to be overly cautious and fearful was over. It was time to set her free.

It was time to embrace life outside the hospital. Life at home.

I will forever remember Wednesday, December 14, 2011, as one of the happiest days of my life.

After 258 days and nights, my baby girl was finally and officially discharged from the Children’s Hospital.

My tiny but mighty miracle was home.
All I wanted for Christmas was my baby girl home. My wish had been granted.

My most precious gift was home.

I was overwhelmed with the deepest joy and gratitude.  I cried and I laughed all at the same time.

I had truly come to learn that there’s no place like home.

People say home is where the heart it.

My heart was finally home.

It was a true Christmas miracle.

Strawberry miracle

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.

After she woke up I breast fed her and gave her a bath. Then I did her trach care and changed her trach ties.

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.

We had gotten her a little strawberry costume, the smallest we could find, which was still a bit big.

She wasn’t quite sure what to make of it at first. After a few minutes she started having fun with it.

It was so much fun dressing her up. All the nurses and her docs popped by to see her the cutest little strawberry ever.

It was another one of those unforgettable moments that I will forever cherish in my heart.

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 was shaking. I asked them what had happened and they explained to me that one of the Pulmonary doctors had put her on an HME to see if she could go home with that instead of the CPAP machine.

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.

She was my tiny, mighty strawberry miracle.