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.

New beginnings

Baby girl had fully recovered from the post tracheotomy pneumonia and was loving life without the ET tube.

She was off the ventilator and breathing on her own requiring 35% oxygen.Malena Lola 1I felt deeply grateful and happy, but I did have moments when I felt very sad. I longed to hear my baby girl cry and laugh.

I kept those thoughts away by focusing on the positive and all the amazing progress our little miracle was making.

I focused on enjoying each little milestone my baby girl reached. Those were precious moments and they were to be cherished fully without any dark thoughts hovering.

Like the day we were able to sit her in her little chair for the very first time. She looked so tiny in the new pink chair that her grandpa Ron and grandma Jacquie got for her.

Male chair 2I remember feeling so happy to see her somewhere other than in her hospital crib. It was just exciting to have a little change and see her progress like that.

I realized early on in this journey that it was essential to let myself fully celebrate these moments. It was important to try and do things as close to as we would if baby girl was home.

It was a key to surviving the NICU as a parent – finding joy and hope in those moments where I almost forgot that we were in the hospital and for a brief instant enjoyed our baby girl as if she were home.

Male chairAnd it was those moments that filled me with strength and courage to continue the journey alongside our tiny but mighty warrior.

It was time to be brave again. It was time to try new things.

On August 25, 2011, she had her swallow test. This involved me holding her on my lap at the ENT clinic, while her ENT put a camera down her nose all the way down her throat. Then they observed her vocal cords moving and her swallowing by having baby girl drink some green tinted breast milk from a bottle.

It was not a very pleasant experience for baby girl as she hated every second that camera was in her nose, and I hated having to put her through that…but the results were worth it. She could swallow perfectly!

I had no doubts that my baby girl could swallow well because she had been swallowing the breast milk I had been giving her almost every day through a small syringe. Nevertheless,  the ENT required this test in order for him to approve her oral feeds.

Approved!

Now we could start increasing her bottle feeds and decreasing her NG tube feeds. I couldn’t wait to be able to feed her 100% through her mouth and get rid of the NG tube taped to her face.

I was also very eager to start breastfeeding my baby girl. I thought that would be the easiest and best thing to do.

The doctors disagreed.

They kept saying that trached babies don’t breastfeed. I asked why and they didn’t really have a good answer. I insisted so finally they said that usually trached babies can’t coordinate the suck-swallow-breathe part of it and also the positioning is difficult.

Both reasons seemed completely irrelevant to me because my baby girl could suck-swallow-breathe just fine and as for the “difficulty” of the positioning, that wouldn’t be an issue.

Difficult was my middle name.

I have always been told I am very stubborn, but I prefer to consider myself very determined.

I was on a mission to breastfeed my baby girl and I wasn’t going to let any doctor tell me I couldn’t try.

I had also come to learn that I should always let my baby girl tell me what she could or couldn’t do. What she could or couldn’t tolerate.

I should listen to her and give her a chance to try. I shouldn’t limit her simply because she was a preemie baby.

I had decided that I would also never let the doctors just predetermine her capabilities  based on their experience with other preemies. Each child was unique and deserves the opportunity to try. As long as I wasn’t doing anything life threatening, I was going to give my baby girl the chance to breastfeed. I wasn’t putting her at any risk by trying.

I felt very strongly about this. I knew that breastfeeding was the best thing for my baby girl.

It was during this time that I found my own voice and confidence when dealing with the doctors. It was during this time that I learned to fully trust my instinct and to question the doctors when I needed to.

I learned that it was my right and my duty as her mother and advocate to ask, to question and to push the doctors when it was necessary.

I wasn’t going to let any doctor determine what she could or couldn’t do without letting her try first. She was going tell us if she could breastfeed or not.

First things first, we started bottle feeds of 15 to 20 millimeters at a time.Baby girl took to the bottle right away and loved it!

She tolerated her bottle feeds great but was getting very irritated when she finished the 20 mls of bottled breast milk, she wanted more!

The doctors wanted to go slow but I started pushing them to allow more breast milk in each bottle feed.

They were afraid she would burn too many calories bottle feeding or that a larger quantity of breast milk would affect her lungs, so they wanted to take it slow.

The problem was that baby girl was so frustrated when she finished the 20 mils of breast milk per bottle that she would suck on her soother for hours. She had never done this before.

I started pushing the doctors to allow me to give her more breast milk per bottle feed. I had to push them and push them.

I told them it made no sense to have baby girl sucking on a soother for hours. If she was able to bottle feed more she would at least be nourished while sucking.It was clear that she knew better than any of us what she needed. She wanted to eat every hour or two, and she wanted to bottle feed. She hated the NG tube now. She never felt satisfied anymore.

Now she knew what it was like to feel a full tummy after a bottle feed. She wanted more of that. It was only natural.

I told the doctors I was going to feed her more milk more often. I would not wait for them to authorize it.

They had no choice but to agree.

On September 6, 2011, I started giving baby girl 4 bottles a day, each with 80 millimeters of my breast milk. I had continued to pump all along and had two freezers filled with my breast milk. In between bottle feeds she was still getting more of my breast milk through the NG tube.

Baby girl was so happy with the bottle feeds and she  tolerated them beautifully.

I knew it was time to try breastfeeding. I knew she was ready.

Of course the doctors were against it.

They were afraid because they couldn’t control how much milk she drank when breastfeeding. Poor docs. I knew they were doing the best they could and I truly appreciated them, but I had to follow my instinct and do what I felt in my heart was best for my baby girl.

I told them I wanted to try it and they couldn’t stop me. It was time.

I had been longing for this moment since my baby girl was born.

I will never forget the first time I breastfed my baby girl. It was on the morning of September 7, 2011, exactly the day after she outgrew her preemie diapers.

Just as I had known in my heart all along, my baby girl started breastfeeding immediately, she loved it!

She knew exactly what to do and it was one of the most wonderful moments of my life. I cried, but it was a happy cry.

The doctors were in awe of her ability to breastfeed. Some of them even apologized to me for being overly cautious, but they congratulated me for being persistent and trusting my instincts.

I celebrated this incredible moment and forgot about all the struggles.

My baby girl and I were sharing that unforgettable moment. Nothing else mattered.

As I held her in my arms and watched her look up at me while she was breastfeeding, I felt as if we were home. In our own little universe of love and happiness.

My baby girl was happy. My heart was happy.

It was time to be positive and hopeful. It was time to enjoy our blessings.

It was time for new beginnings.