I’m not sure how we would have made it through our NICU journey without a support system. The people that drove us to the NICU, watched our oldest son, brought us meals, listened to us cry, and prayed with us made an unbearable journey a little more bearable.
The biggest part of our support system was our parents, and the twins’ grandparents. They would visit the NICU every day or watch Mr. B. Since he was only 2 at the time, he was not allowed in to see his brothers. It seemed impossible to split my time between him and the twins, but with our parents, it was possible.
The NICU is a time of uncertainty and a roller coaster of emotions. You need someone in your corner to help you navigate your way through. We were very lucky that we found our support system.
Today, you’ll read about an amazing boy still fighting in the NICU. His mom, Amanda, has a support system in her mother, who she calls “Nanny.”
I’m so honored to share Haven’s story, as told by his momma, Amanda.
1. Tell us about your baby
Baby Haven Greyson was born on New Years Day at 10:39 am, after I fought six long days in labor and delivery to give him every fighting chance to stay alive. He was 25 weeks and six days.
Baby Haven was born inside his entire sack. A doctor broke him free into this world at 10:39 am, weighing 410 grams and measuring 11 inches. It is a rare, lucky omen to be born this way. Only 1 in 80,000 babies are.
That is Haven. He truly is one of a kind.
He was born breathing on his own. My mom heard his first cry’s while I was being sewn up. She said he sounded like a tiny kitten. He was a miracle. I wouldn’t see him until I was in recovery later, but my mom told me how beautiful he was, and that he was ok.
This is how the story of Haven begins… Me and Nanny praying for one more hour, one more day, for him to breathe and be ok. He hadn’t even been born yet and this tiny little life had already transformed what I felt was meaningful in life.
2. How long was your NICU stay?
Nanny and I are now at 55 days in the NICU journey, with a projection of at least 5 to 6 more months.
What was the hardest part?
There have been “hard parts” about being in the NICU. Mourning not having a normal birth, leaving the hospital without your baby in your arms, not knowing if your baby will make it past a day – a week – the next hour etc.
Other hard moments were standing idly by helpless as others cared for your baby. Watching your baby in pain and being unable to do anything. Asking permission to touch your son. Kissing him for the first time after a month of life as he heads for life threatening surgery where the odds are this will be the last time you might see your child alive.
Watching your baby turn dusky when he Brady’s and can’t breathe. Having his breathing tube come out while you are holding him. Going to the hospital day in and day out, hands raw from the constant washing, seeing your baby through a plastic castle and going home to cry at night, still hearing the alarms and buzzers.
These are a few of the hardest parts so far in the NICU.
3.Do you know what caused your premature birth?
Haven is my first child. He suffered from Inter Uterine Growth Restriction (IUGR) where the placenta stops providing nourishment to the baby in the womb. Had this been ten years ago, Haven probably would have been chalked up to still-born and failure to thrive in the womb.
Luckily, I am a veteran and they allowed me to go to Stanford for OB care. They routine checked Haven’s growth, and by the 20th week knew that he was 14 days behind. I had an amniocentesis so we knew genetically Haven was good. So, all things were leading to the placenta.
The next week the doppler revealed a slightly restricted blood flow to baby Haven.
I suffer from Idiopathic Intracranial Hypertension (I produce too much spinal fluid) and I was also diagnosed when pregnant with preeclampsia.
I was devastated when the doctors told me I would be lucky if I could carry Haven to 28 weeks. More likely, I would be hospitalized at 24 or 25 weeks. No mom wants to hear their baby has less than 24 percent survival, but that is what Haven was given due to his age and behind growth.
Haven and I went into hospital at 25 weeks when the next doppler revealed the worse blood flow – called reverse flow from the umbilical cord. To top it off, Haven was breech. He was smushed at the bottom near the cervix with next to no amniotic fluid.
Labor and Delivery team rushed to get steroids on board, which you need 48 hours for. Haven made it.
Then they pushed for magnesium to help with brain bleeds. I had no food or drink, averaging one meal at most in a 24 hour period, should an emergency c-section be needed.
Haven fought for 6 days making it into 2019.
I told him we didn’t need the tax write off, he can stay as long as he is able. The doctors called it on the 1st and a planned classic c-section was done.
4.How are you and your baby doing now?
Nanny and I attend weekly therapy. I write my journey on Haven Greyson’s Facebook page daily to capture the moments of his growth and share in the struggles of NICU life.
Baby Haven is now 1010 grams (1 kilo club!) and starting back on feeding through the OG tube to his stomach. He defied the odds and his surgery resulted in 25 cm of his intestines being removed. Haven has a stoma and a bag. He is still on the conventional breathing machine. Even his nurses say he is a miracle.
We will need 5 to 6 months of growth before his next surgery to reconnect his intestines and permanently fix his hernia.
He will likely have some form of ROP, so we will have to wait and see what interventions might be needed.
Main thing is we need him to Grow Baby Grow!
Haven is a fighter, as most preemies are. He is a symbol of hope, strength, love and all the goodness in this precious thing called life.
5. What advice would you give to a new preemie or NICU family?
Don’t go it alone!
Find other families and talk to them. Rather it be in person or online.
Ask loads of questions to you doctors and nurses. They are there to help you understand. Find a few primary nurses that will work with your baby and you that you trust and like. Know that it’s ok to have a ton of emotions – it’s ok to feel numb too.
Remember to get outside even if it’s 5 mins for fresh air.
Most NICU journeys are intense so their will be ups and downs and unknowns. Try your best to live in the today. Be present with you new baby as they can feel your love and will fight for you.
Best of luck on your journey and know you are not alone.
More of Haven’s journey can be found HERE.