Prematurity and the NICU

Prematurity and the NICU

Connecting With Other NICU Parents

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I never thought that I would be a NICU mom.

The first time I walked into the NICU, I was completely overwhelmed. There were life support machines everywhere, beeping and blinking, working hard to keep all of those tiny babies alive. Words could never express how my heart ached when I saw my tiny baby hooked up to all of that equipment. Several friends and family members looked on, offering their love and support, but they still couldn’t fully comprehend the depth of my pain.

When my son was born at 25 weeks, a few friends of mine who had experienced the NICU before me, began pouring into my life with words of encouragement and hope for the future. Their support was a tremendous source of comfort.

As our days in the NICU turned to weeks, then months, I became intentional about connecting with the other NICU moms who were journeying alongside me. In doing so, I discovered that there’s an instant, unspoken bond that forms between people who share a heartache; we find strength in each other.

If you’re a new NICU parent, I want to encourage you to connect with others around you. One day, you might discover that you’ve introduced yourself to a new lifelong friend.

Here are four steps I took to connect with other preemie parents.

1)  I found places to interact:

  • I talked with other parents in my baby’s POD, a.k.a. his roommates’ parents.
  • I spoke to other moms in the pump room.
  • I connected with other parents in the parent lounge.
  • I introduced myself to other parents in the pump parts wash station.
  • I attended the parent support group meetings when I could.

Note: The rooms in your NICU might differ from mine, but it’s important that you find a time and/or place to connect.

2)  I always started the conversation with a smile before asking whether they had a little boy or a little girl. After they responded, I would share that I had a little boy, what his name was, when he was born, how early he was, and/or how far we were into our NICU journey. Sometimes the conversation continued, sometimes it didn’t, and that was okay too. No matter the outcome, it always resulted in another friendly face in the hallways.

3)  I kept the conversations positive, offering empathy and words of encouragement to the parents that I connected with. I also made sure to remember their babies’ names and stories so that I could ask them how things were going the next time we met.

4)  I joined online preemie parent support groups, including one for my local area. There were many parents in the group whose children had grown and they offered invaluable insight and support.

By reaching out to other NICU parents, I discovered a beautiful community. I am so thankful for each and every friend I’ve made; they will always have a special place in my heart.

Love and Blessings,

Elise

The post, Connecting with Other NICU Parents, first appeared on Boys and Blessings.

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Prematurity and the NICU

What It’s Like to Wait to Bring Your Baby Home

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The birth of our preemie was nothing like my previous birth experiences.

My hospital room was dark and quiet. The sounds of a baby crying echoed throughout the unit, reminding me of what I was missing. Less than two years earlier, I had delivered my second baby and was staying in the executive suite across the hall with my husband. Our stay had been filled with visitors, gifts, quality family time and midnight nursing sessions.

Things were completely different this time; my empty arms ached for those late-night newborn snuggles and the sounds of a content baby had been replaced with the quiet, steady rhythm of a whirring pump. A tear rolled down my cheek as I gently touched my swollen, empty belly. I needed to see him again. As I prepared to head back up to the NICU, my body seemed to protest each movement, reminding me that the labour and delivery had been especially rough this time around.

When I stepped out of the room, a young couple breezed down the hallway toward me with their newborn in a car seat. They were glowing with pride and I couldn’t help but feel a pang of jealousy as they walked by.

Up in the NICU, I slowly pulled back the cover on the isolette and took in my baby’s small frame. Weighing in at just under 2 pounds and at only 13 inches long, he was the tiniest person I had ever seen. With the nurse’s help, I pulled up a chair next to him, gently placed my hands on his head and feet and whispered, “Mommy’s here.”

Five days later, I was discharged. As we drove away from the hospital, I kept glancing at the empty backseat behind me, knowing it would be the first of many nights when I’d have to leave without my baby.

We never expected something like this to happen to us, but then again, no one ever does. Through all of it, our hope and our faith in God were what drove us, what spurred us on even in our darkest moments.

Our son spent a challenging 123 days in the NICU before he came home. On that day, my heart swelled with pride as we walked out of the unit, together—our little miracle, our little fighter was finally coming home. That moment made every prayer, every tear, every minute spent in the hospital worth it. There was a sense of relief, of victory and an unspeakable joy in knowing that our family would, at last, be complete.

I share my story to help raise awareness about prematurity. Thank you for being part of the conversation.

Blessings,

Elise

 

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Prematurity and the NICU

Our Biggest Miracle, So Far

One year ago, this past weekend, our lives were forever changed. Our little 25 week preemie, Roo, had only been in the NICU for 5 weeks. He had experienced his fair share of trials during that short time, but nothing could have prepared us for what was to come.

On the morning of February 19, 2015, I walked into the NICU and found that my baby’s health had severely deteriorated overnight. He was diagnosed with chronic lung disease, one lung had collapsed and his other lung was partially collapsed. The decision was made to put him on “the jet”, a last resort high frequency ventilation (breathing) machine that delivers hundreds of breaths per minute. They had to sedate him and give him a paralytic drug in order for the machine to do its work. At the same time, the doctor who was on came over to me and said, “Your baby is very sick…he probably won’t make it.”

As the doctor walked away, I crumpled into a sobbing mess, feeling shattered and helpless. Roo’s nurse did her best to try to pick up my broken pieces, but I could tell that she struggling to stay positive too.

My husband, who was a five hour drive away, found out the news through a text message. I would have called, but I couldn’t bring myself to echo the doctor’s devastating words aloud. Upon receiving my message, he found childcare for our other two children and came as quickly as he could.

Soon after my husband arrived at the NICU, Roo was also diagnosed with a severe case of NEC–a serious disease that affects babies’ intestines. NEC is detected and monitored with x-rays. Subsequent x-rays are done in order to examine the progression of the disease. Unfortunately for Roo, his follow-up x-rays indicated that his case was progressing rapidly, despite having been started on multiple broad spectrum antibiotics.

A surgeon was consulted and everyone on the medical team agreed that Roo desperately needed a life-saving surgery. Yet, he was too sick to be transported to the surgical unit at the children’s hospital across the river. He was then started on a series of drugs as all of the medical staff put their best efforts into stabilizing his vitals, hoping that he would soon be well enough to travel to the other hospital. And yet, nothing worked to improve his condition. If anything, all of the medication he was on only worsened his health; his kidneys suffered severe damage and he became unable to expel liquid waste from his body, even with the use of a catheter. (His intestines also appeared to have stopped working during this time.)

My husband and I stayed up all night with Roo, taking turns keeping watch over him, not wanting to leave him alone. In the morning we were physically and emotionally exhausted. He had only just barely made it through the night; his vital signs were still deteriorating despite all of the medical support. During morning rounds the medical team requested that we attend a meeting with them, to be held just after noon.

We called our parents in to join us for the meeting and we all sat down with the medical team to discuss Roo’s dire situation. Our family was presented with 3 options:

  1. We could keep doing what we were doing and see what happens. However, we were warned that waiting for him to stabilize wasn’t really the best option as the antibiotics that he was on would only serve to make the situation worse. The doctor said that as the bacteria in his bowels died off, they would give off gas, which would only further bloat his intestines and increase the chances of them being perforated.
  2. We could seek compassionate care. In doing this, we would have to admit that Roo was too sick to be saved. All life support would be removed and we would hold our baby as he left this world and entered the arms of Jesus.
  3. We could send him for the surgery that he so desperately needed. And yet, this wasn’t really an option because he was too sick for transport; he couldn’t be transported with the breathing machine that he was on and, even if he could be, he might not survive the journey or the surgery.

Basically they told us that they believed that whatever choices we made about Roo’s health didn’t matter–ultimately he wouldn’t survive.

We looked at the medical team and said, “These options aren’t really options; they all lead to the same outcome.” However, we went with option one because it offered the most hope. We were not going to give up on Roo, not after we had fought so hard for him already.

After the medical team left, my mom looked over at me and said, “They didn’t give us option four; we’re choosing option four. We have a mighty God who can heal Roo.”

In that moment we came together as a family, parents and grandparents, and prayed for Roo. We fervently prayed for his healing and that he would be saved. (At the same time, we also had many others praying for him.)

Two hours after our family’s prayer, his vital signs began to improve and they were able to begin weaning some of his medication.

The following afternoon, just 24 hours after our prayer, Roo completely stabilized: he was moved back onto a conventional breathing machine, his heart rate entered back into the “normal” range, his blood pressure continued to level out and the swelling in his abdomen was drastically reduced. At that time he was declared well enough to be transported to the children’s hospital. They loaded him into a “Stork” (a portable incubator complete with a breathing machine and monitor) and wheeled him into a waiting ambulance.

We met the surgeon soon after we arrived at the new hospital. Upon seeing Roo, the surgeon declared, “This isn’t the same baby I heard about yesterday…Roo is healing and is not a surgical patient at this time.” Hearing the surgeon’s words was like balm to our wounded souls; they brought us more hope and joy than we had felt in a long time.

Those who had witnessed how sick Roo had been could offer no explanation as to why he improved so quickly, but we knew…

This is the confidence we have in approaching God: that if we ask anything according to his will, he hears us. (1 John 5:14 NIV)

The rest of his NICU stay wasn’t without trials, but God brought us through the worst of it that weekend.

On May 16, 2015, after 123 days in the NICU, Roo came home!

Everything thing we experienced that weekend, along with just having our baby in the NICU, really tested our faith; we seem to have this innate desire to be in control of everything. And yet, the Bible tells us to trust in the Lord:

Trust in the Lord forever, for the Lord, the Lord, is the Rock eternal. (Isaiah 26:4 NIV)

Roo’s time home hasn’t been free of “bumps” or worries, but we’ve continued to trust that he and his brothers are in God’s hands; we’re doing our best to remember to cast our cares upon Him.

We serve an awesome God! What are you trusting Him with today?

Blessings,

Elise

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Prematurity and the NICU

What I Wish to Share with All New NICU Moms

I wrote this letter after four months in the NICU, shortly before my 25 weeker came home. While we were on the unit, I saw countless moms walk in to see their babies for the first time.  More than anything, I wanted to talk to them and offer some words of encouragement.  Instead I remained silent, whispering a quiet prayer for their precious children, because I knew how painful those first few moments felt.

These are the words that desperately I wish I could share with all of the new NICU moms.

Dear New NICU Mom,

I saw you as you came in to see your precious baby today. I noticed the look in your eyes as you glanced around the room, a look that quietly expressed a loaded one-word question, “Why?”

I watched you take everything in: tubes, monitors, machines, the constant beeping, all of the equipment working together to help your baby survive. It’s overwhelming, I know, but you will soon make sense of it all.

I’m certain that you’re wondering how you’re going to get through this. Trust me, you will find a way. We moms are more resilient than we realize.

I was where you are not too long ago, and yet, it feels like an eternity. I understand that you’re concerned about what the future holds and, if you’ll let me, I’d like to share some thoughts to help you along this difficult road.

1) Believe in yourself. Believe that you can do this. Believe that you are the most important person in your baby’s life and that you can have a profound impact on your child’s journey.

2) Keep your hope alive. Your baby is a fighter. You will be amazed by the challenges that your mighty preemie will overcome.

3) Get to know the NICU. Find out where things are and learn the lingo for the equipment, tests, protocol and processes. Doing so will make it easier to navigate the NICU and will also help you to better understand what is discussed on rounds.

4) Be consistently involved and keep learning. Attend rounds. Learn all that you can about your baby as well as any conditions that he/she has or may be at risk for. Find out whether any preventive measures can be taken and learn about any symptoms you should watch for. You are the only constant in your baby’s life and will likely be the first person to notice if something is amiss.

5) Be your child’s advocate. Remember that medical professionals are people too. They are there to serve you and your baby and have your child’s best interests at heart, but sometimes mistakes happen. Speak up when you think something isn’t right. Make your wishes known and explain why.

6) Ask questions about everything. Ask as many people as you like and don’t be afraid to ask for a second opinion; someone else may be able to offer an alternative treatment or provide new insight into a situation.

7) You are not alone. Don’t be afraid to connect with other NICU parents. They will be one of your greatest resources and can provide you with hope and support since they understand what you are going through better than anyone else does.

8) Drop the guilt. It’s not your fault. You did nothing wrong. You are here fighting for your baby because you love your child and that’s enough; you are already a great mom just because you care.

9) This is the hardest one: take time for yourself. Read a book, watch a show, go grab a coffee, eat a good meal, talk to a friend, take a nap, etcetera. Your baby needs you at your best. You can’t be at the beside 24/7, so make sure to rest and rejuvenate in order to stay healthy and be fully present for your baby.

10) Remember that even though the days are long, all journeys must come to an end. Although it will always be a part of your life’s story, one day the NICU chapter will come to a close.

With love,

Another NICU Mom

This post was originally shared as one of my personal Facebook status updates and it first appeared on the blog, Boys and Blessings.

I love hearing from you! Leave a comment below or connect with me on Facebook.

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Prematurity and the NICU

Due Date: An Open Letter to My Preemie

April 27, 2015

Dear Sweet Baby,

Today is your due date. There are so many mixed emotions surrounding this day. We are incredibly thankful for you and your life and we celebrate this huge milestone alongside you. However, at the same our hearts are heavy because of the suffering you have had to endure and the many challenges that you still face. During the time when you should have been tucked away in my belly, safe and warm, you have been fighting for your life. I wish things were different today, but unfortunately my body failed both of us and nothing went according to plan. Yet, you never cease to amaze us as you continue to persevere.

Despite everything that has happened, we are blessed. Through all of this, we have experienced the kindness and generosity of family, friends and strangers alike. There are so many wonderful people who genuinely care about you. They have walked alongside us and supported our family in a variety of ways; everything from prayer support, to making meals, to watching your brothers, to the medical team caring for you.

By God’s grace, we have also experienced so many incredible miracles with you. Never forget that your life is a miracle. Baby, you are our miracle. We are better because of the trials we have faced together; our faith is stronger and our family relationships are closer.

While the circumstances surrounding your birth and your fight for your life in the NICU has been the source of our greatest pain, you have been the source of our greatest joy. We love you, Baby, and are so blessed that God has chosen us to be your parents. We cannot wait to bring you home!

All my love,

Mommy
Xoxo

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