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.

Big blue sky

It was the last days of September and Malena Lola was riding a wave of positive progress.

She was growing and getting stronger each day. She was starting to hold her head on her own and was almost sitting on her own.She had a bonchoscopy done and the ENT was able to determine that she did not have tracheomalacia nor any other airway structural issues. This was fantastic news because it meant that in the short term we could wean her off the CPAP and in the long term it definitely made baby girl’s road easier.

It also meant we could finally be moved out of the PICU and into Unit 2, which was the transitional unit prior to going home.

On September 27th, 2011, for the first time since she was born 155 days ago, we were able to leave the NICU / PICU area of the hospital.

I was so happy and excited and grateful. This was an incredibly important milestone because it meant that my baby girl was strong and healthy enough to leave the critical babies area.

We moved from the main floor to the second floor. We were moving up in the world!

We were one giant step closer to home.

Our new room was such a lovely change as well.

We not only did we have more room but we had more privacy.

The nurses in Unit 2 only came in when needed, so that allowed me to spend time with my baby girl without constant interruptions.

I had always been doing all her care, and now I was also doing her trach care and suctioning as well,so we barely needed the nurses. They only came in to monitor baby girls sats and to bring me her meds and bottles when needed.

I had began relentlessly pushing the subject of my baby girl being discharged and after much debate, I had finally gotten the doctors to acknowledge that yes, she would be better off at home.

By October 3rd, 2011, I had also won another battle against the docs: I was now able to breastfeed my baby girl on demand ONLY. No more bottles while I was there. She would only be given bottles if she woke up hungry during the night when I wasn’t there.

My baby girl was thriving!

By October 8th she had gained more weight and was now 8.7 lbs! This proved to the doctors that she was fully capable of thriving while breastfeeding only and on demand.

She was playing on her side and doing tummy time every day.

They doctors were astonished. I was proud. Proud of my little girl for proving them wrong and showing them that sometimes it was good to have great expectations.

Now we needed to start baby girl’s sprints.

This meant taking her off the CPAP machine starting with 15 minutes and watching how she tolerated it. If she did well then we would add more repeats during each day and longer time.

The doctors wanted to wait and not make too many changes at the same time, but I insisted because I knew in my heart that my baby girl was ready.

I remember the meetings with the doctors as if it were yesterday… I remember the frustration I felt every time they said they didn’t believe my baby girl would be able to go home for at least another 6 months for two reasons.

First reason was that they didn’t think she would be able to be weaned off the CPAP completely, which meant that in order to be discharged for home they would have to find a way to provide her CPAP at home and they did not have the right machine available in the hospital.

Second reason was that they required two caregivers to watch baby girl at night once she was at home and they said this would usually take 6 to 9 months.

To me both reasons seemed completely ridiculous and did not make any sense whatsoever.

I would prove to them that my baby girl did not need CPAP and if she did, I would make sure we got the right machine for her to go home.

And as for hiring night time caregivers, I let them know that I was a Human Resources professional and that I could post, recruit, interview, hire and train two full time caregivers within a month.

I told them there was no medical reason for my baby girl to be at the hospital. I told them I wanted an immediate outline of the criteria and steps to ensure discharge as soon as she was weaned off CPAP and I had the caregivers in place.

I was already in the process of completing our Trach Care Course as well as Infant CPR Training, so we would be ready within a month as well.

They had no choice but to agree to comply and come up with a plan for discharge.

I had my momma warrior armour on and I was not setting it down until my baby girl was home.

By October 10th, 2011, baby girl was doing one hour sprints four times a day. She was doing amazing!

Once again, I felt a very proud momma. My baby girl was showing them all that she was not only thriving but truly ready to go home.

It was time to test the car seat and stroller to make sure she was able to breathe well in them.

Success!

On October 16, 2011, we had the most wonderful day yet. We were able to take baby girl out on her stroller for the first time ever!

She was sprinting off the CPAP machine and was just on her trach craddle and 2 litres of oxygen.

I remember the nurses instructing us that we could not take her outside, that we could only walk within the Unit. I told them that was once again, ridiculous.

I was not going to take my baby girl up and down the corridors of a unit filled with sick kids.

I was going to take her outside so she could actually breathe fresh air and feel the sunshine for the first time in her life. The doctors agreed that it was safe and reasonable.

The nurses were so nervous. I ignored them and walked away with my baby girl, smiling.

I was happy and enjoying the moment. I wasn’t going to let any of their unnecessary anxiety get to me or my baby girl. I had a full hour during her sprint off the CPAP machine to take her outside and I was beyond excited.

I knew deep inside that this was a very special moment. An unforgettable moment.

As I strolled down the main lobby of the hospital and towards the front doors, I felt as if I were in a dream. I had longed for that moment for months. For exactly 174 days.

I felt such joy and gratitude.

I will always remember my baby girl’s big brown eyes looking around at everything, discovering glimpses of the vast world outside her hospital room.

The expectations had been exceeded. The limits had been pushed. The obstacles had been overcome.

As I stepped outside the hospital with my baby girl for the very first time, I cried with happiness.

So many times I had watched other parents leaving the hospital with their babies…and now I was finally able to experience it myself. During that hour, nothing else mattered. The hospital disappeared, the nurses disappeared and the doctors disappeared.

It was just us.

As I looked at my baby girl in awe of everything around her, in awe of the breeze and the sunshine on her face, in awe of the big blue sky, in awe of life itself; I knew I was witnessing a miracle.

I knew everything would be alright. I knew my baby girl would be home soon.