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.

Down the rabbit hole we go…

It was now early August. Our Malena Lola was just over 3 months and weighed 4.2 lbs.

She was doing really well, growing and getting stronger each day.

She played with a rattle for the first time! She was such a trooper! Even though she couldn’t move around freely, she still smiled and enjoyed it. I remember her nurse Trish helped hold her ET tube to give her a bit more mobility as she shook her first rattle.

Another one of those brief moments of pure joy that we cherished so much knowing that our sweet baby girl would have to undergo surgery again.

Later on Brad and I met with the head baby girl’s ENT and her Pulmonary doctor to discuss her upcoming tracheotomy surgery.

I remember sitting in the room and listening to the doctors speak. I remember them explaining what a tracheotomy was. I remember they used a plastic model of an airway to show us the details of the procedure. Everything they said made sense. Everything they said was clear.

I understood every word but I felt numb.

The thought of my baby girl having an open hole in her throat for an undetermined length of time was so terrifying that it made me feel numb.

I couldn’t let myself feel what I felt at that time. If I had, I wouldn’t have been able to go through with any of it.

After the meeting I needed a moment. I needed to go sit outside and cry.

I knew this was happening. I knew this was what she needed. I knew that baby girl’s surgery would be on August 11, 2011.

But I still couldn’t accept it. I still felt angry and heartbroken that my precious baby girl would have to go through this.

The uncertainty and fear were more present than ever.

How long would she need to have the tracheotomy
Would she be able to talk once the tracheotomy was taken out?
Would she be alright during the surgery?

There were no answers to my questions at this time. Only uncertainty.

The surgery was just a few days away. I tried to stay positive but I remember I cried a lot during those days.

It felt like I was mourning my baby girl’s loss of her ability to make sounds and in a way, the loss of her perfect little neck.

I remember holding her and staring at the area where the stoma or hole in her throat would be. I remember caressing the skin.

I remember thinking that once the tracheotomy was done, she would have a scar there for the rest of her life.

My baby girl was just three months old and she already had two scars – one on her back from the PDA ligation surgery and one in her right foot from the IV burn.

She would eventually have a third scar on her neck from the tracheotomy.

A part of me tried to focus on the positive and think about my baby girl’s face free of the ET tube. Free to breastfeed and to smile without a tube taped to her mouth.

I struggled to stay positive at times.

There were days where I felt everything would be alright. And there were other days where I just wanted to cry and scream.

I didn’t want my baby girl to have a tracheotomy. But there was nothing I could do about it.

Once again, I had to accept and let go.

It was Sunday. Her surgery was scheduled for Thursday. I decided to make the days before the surgery very positive. I wanted baby girl to feel loved and safe going into the operating room.

I was finally able to find a couple of onesies small enough for her. I dressed her for the very first time.

Those were the moments that gave us a sense of normalcy and joy amidst it all.

We had so much fun dressing her that we tried on both outfits. The pink and then the green.

I spent the next three days holding baby girl as much as possible. I knew that after the surgery she would be fully sedated for 5 days, as is it a very high risk time because the stoma is fresh and healing. They needed baby girl immobilized during those 5 days.

I knew I wouldn’t be able to hold her for at least 5 days. After that, the ENT would do a trach change and if the stoma was healing well, then she would be off sedation.

I remember thinking that I had never heard my baby girl cry yet. And now, I would have to wait even longer to hear her at all.

The tracheotomy would not allow her to make sounds.

I looked at my little girl and cried. It was the first time I cried in front of her.

I didn’t want to cry, but I couldn’t contain it. Those were very emotional days. There was something deeply heartbreaking about accepting the reality of my baby girl needing a tracheotomy.

I started to feel guilty again. I struggled to keep the negative thoughts away…

I knew I had to stay strong but a part of me felt like a failure. Like I had failed my baby girl as a mom.

I asked God why this was happening to my baby girl. There was no answer at that time. Only uncertainty.

I realized that the only way to calm my uncertainty was to have faith that my tiny, mighty little warrior angel would be alright.

I had to forgive myself and know deep in my heart that I had not done anything to cause my baby girl any harm.

This was easier said than done…but for now I forced myself to let go of the guilt. Forgiveness would come later…

It was Thursday. It was the day of my baby girl’s tracheotomy surgery.

I went to the hospital very early that morning. I spent all morning holding her. Looking at her. Telling her how perfect and precious she was. Telling her how grateful I was to have her in my life.

I held my baby girl close to my heart and once again, she gave me the strength and the hope I needed.

I told her she was strong and brave, and that everything was going to be alright.

I told her she would soon be free of the tube and she would be able to smile.

I told her I loved her.

I looked at my baby girl one last time before putting her in the transport incubator.

I knew this would be the last time I saw her little neck as she had been born.

It was time to take baby girl to the operating room.

It was time to be strong and believe.

It was time to have faith.

It was time to go down the rabbit hole.