Love, Tiffany

Dear NICU Mama,

Bravery sometimes looks like surviving one more moment with the uncertainty, the pain, and the responsibility you feel as a mother. It’s getting up in the morning or staying up all night to make sure your baby is cared for.

Choosing to become a mom is brave. Whether it happened by accident, after years of trying, after several fertility treatments, or through adoption - you mama are brave. It’s brave to choose to love someone you don’t yet know. To choose a love that is so great it hurts. It’s brave to show up and keep loving them through every challenge and every accomplishment.

Bravery sometimes looks like adjusting your expectations of your journey into motherhood. Maybe life just doesn’t look like the way you imagined it. But you are making the most of the life you were given, and you are the strongest person I know.

It may feel like your child is missing out or that you are missing out. Enduring that pain, that loss, that grief? Just existing with it is what strength looks like. Our children don’t need us to save them. Our children need to watch us save ourselves. I quit using my children as my excuse to NOT be brave and started using them as my REASON to be brave instead.

It is so brave to take care of yourself. To take the time to understand what it is that you need to keep on going. (Even if that means eating chocolate cake every single day of your NICU stay.) Your baby cannot do this without YOU. They need their MAMA. Just your smell and terrible singing voice calms and comforts them in a way no medical intervention ever could.

Brave is honoring your instincts and realizing that even when it doesn’t feel like you know what’s best for your baby, you do. You are a NICU Mama and you are the bravest woman I know. 

Love, 

Tiffany

More of Tiffany + Isla + Finley’s NICU journey:

“My twin girls, Isla & Finley, were born at 24 weeks 1 day gestation at just 1 lb 6 oz and 1lb 8 oz in the early morning of November 4th, 2018. My husband and I headed to the hospital after some spotting and cramping only to find out I was dilating and having contractions. I was admitted immediately and given steroids and magnesium to stop the labor. We were told if we waited and I dilated anymore, they could get stuck in the birthing canal and die. 

We were rushed back for an emergency c-section during which I felt the first cut as the epidural hadn’t kicked in yet. I lost a typical amount of blood, but it made me blackout for a minute as my husband and I thought I was dying. As soon as I came to I started puking. I asked straight away if they were okay and my husband said “They are here! We have 2 girls!” 

They were both whisked away to the NICU while I was brought to a recovery room. Finley ended up having a 129 day NICU stay that involved time on several different ventilators, frequent Bradys and apnea spells, feeding tubes, IV/PICC lines, varying isolation precautions, feeding issues, a NEC scare that turned out to be nothing, and ROP that required laser eye surgery. There were some scary moments like when she pulled out her own breathing tube. I saw her heart rate drop to 6. Finley was 27 days old before I got to hold her and it was the most amazing moment. I had to try not to cry happy tears on her.  

Isla on the other hand had more complications. Around 2 weeks old, on Thankgiving, she contracted an infection with MRSA and got very ill. She too had many tubes and lines, switched ventilators, CPAP, high flow oxygen, and back. Isla was 11 days old before I got to hold her and it was for less than 5 minutes while they changed her isolette. She developed a grade 1 brain bleed and a pnuematocele in her right lung that was taking up precious space for needed lung tissue, but they didn’t have a specialist here that could do anything about it. 

When they were both about 2.5 months they moved into open-air cribs and were on CPAP and high flow oxygen. Soon they needed laser eye surgery for their ROP. They both had a successful surgery, but Finley crashed shortly after surgery and needed additional support and interventions to stabilize her. They both seemed to be getting better and moving in the right direction after that. During this time I was unable to hold my girls together because although Isla’s MRSA was testing negative, they had to treat her as if she still had it...one of the downsides to a fishbowl style of NICU. 

Suddenly Isla was needing more support. She was diagnosed with pulmonary hypertension and her pnuematocele doubled in size in a weeks time. She was life-flighted to the closest Children’s Hospital and nearly didn’t survive the night. That was when our journey got really complicated. Our 1.5-year-old son was at home going to daycare during the day, Finley had weeks of working on feeding to go and Isla was suddenly 4 hours away and very touch and go as we learned she also had pneumonia for the first time. We commuted weekly to see Isla for the weekends and spent the weekdays at the hospital with Finley and the evenings with Jaxson. Little did we know this would go on for 10 more months. 

On March 13th, 2019, Finley graduated from the NICU and came home on low flow oxygen. She cried 7+ hours a day and didn’t want to eat for anything. We even had to take her to the ED because she was so dehydrated. On March 20th, 2019, we got a call from Isla’s doctors telling us to drop everything and come now. I will never forget a single thing about the day the doctor told us our daughter was going to die.

I remember being walked into a conference room away from her room because she was sensitive to noise. I knew something was wrong as the medical team sat across from us at a table that seemed a mile long. One of the nurses asked me if she could hold Finley for me and I said "No, I'm okay". My husband sat beside me, my mom and in-laws were there and also our less than 2-year-old son.

The doctor started explaining the situation and said our daughter was on as much respiratory support they could give and were having to paralyze her many times a day to prevent her from fighting the ventilator. They were desperately trying to keep her alive. She started talking to us about life support and quality of life if she came through this acute worsening of her condition. She said frankly, I don’t think your daughter’s lungs can survive this and I'm not even sure she will survive 10 more minutes.

After that I heard nothing as she continued to explain things about DNR papers. Before we even got to this point, I knew it was coming and my whole body had started shaking and I was shaking my head no. After she was done I started repeating NO, NO, NO over and over again. Louder and louder between my sobs and the sobs of the rest of our family. A nurse came and took the sweet baby from my arms and I crumbled. My son looked at me and us all with such confusion. He came to me and hugged me and my heart ached, I felt as though I was suffocating, and I felt defeated.

When I finally got back to my daughter, I held her hand. I assured her that Mommy is here and Daddy is here and that we would never give up on her. That everything was going to be okay. I sang to her and kissed her sweet head. We slept in her room next to her bed, if you could call it sleep, the next 2 nights. I couldn't describe or talk about my feelings during that time. I can only describe an inner peace I felt that made me know she would be okay. Even when things slowly started getting better I'd tell the doctors she would be okay and I wouldn't even entertain the doctors’ insistence that she still could not make it.

A week later to the day, the medical team told me she was strong enough to withstand 2 surgeries. She had her trach and g/j tube placed that day. She got better and stronger after that. She had many, many setbacks such as 5 trach infections in 4 months, pneumonia twice more, collapsed lungs, and a central line infection. I swore I wouldn’t celebrate their first birthday in a hospital. But we did. And celebrating their birthday felt like I was celebrating all the pain of the night they were born and the days that followed. When she finally tolerated the home ventilator, it was hard to allow myself to hope that she’d really be coming home. But 4 weeks to the day and she came home for the first time on December 23rd and it was the best gift our family could have ever received.”