
I grew up in a household where foster babies were my normal family life. My parents became foster parents when I was just 5 years old and they continued fostering (and adopting) well into my adulthood. Throughout the many years of my childhood, my parents fostered many premature babies.... it was "normal" for me to see itty bitty babies, even back in the 1980's, but I don't think I really understood what it meant for a baby to be a preemie until I had my very own.... my sweet son Teddy.
Although, to be honest, I didn't get a

full-blown preemie experience with Teddy because he didn't come to live with us until he was 10 lbs. and 3 months old. He had been born drug addicted at just barely 31 weeks gestation (estimated) and spent 3 months of his life in a special "home" for babies dealing with drug withdraw.
By the time he came to me, he was a chunky 10lb baby who still had lots of issues thanks to his drug exposure, was on an apnea monitor for bradycardia, and was on medications and special formula for reflux.
It was a HUGE learning experience for me and one that somewhat prepared me for
really dealing with prematurity just one year later....


My son Henry was born on March 25, 1999 at what we originally thought was 36 weeks gestation. However, it quickly became apparent to us that Henry was NOT and instead was somewhere much closer to 33/34 weeks gestation.
He was having difficulty breathing and I can remember holding him for the first time in my hospital room and feeling.... exhaustion and so much confusion. He was grunting and crying and just wouldn't settle in my arms. I remember crying inside. I remember feeling so...lost. I wanted so badly to comfort Henry, but he just wouldn't settle. It was heartbreaking. I remember thinking, "Doesn't he know me? Shouldn't my body be giving him comfort?"
The nurse that had been in the room took Henry back to the nursery to try to calm him and not much later, she came back in the room and asked Russ to come with her.
I was exhausted. It had been a long day. I had been at the hospital since 6am and it was now well past 9pm and well, I
had given birth...
It seemed like hours passed before Russ came back into the room and when he did, he was followed by our pediatrician, Dr. D. Dr. D quickly told me that Henry was having trouble breathing and that he was going to have him transferred to another hospital that had a NICU. He told me that he needed to go back and fill out paperwork, but that they would bring Henry back into the room before they transferred him.
And he left the room. And so did Russ.
I was stunned.
I remember fighting off the desire to sleep as I watched the clock tick away. I tried to watch TV, but couldn't. Instead, I just watched the clock. And the door.
Finally the team came into the room. I was introduced to everyone... the nurses, doctors, ambulance drivers, etc... a full team to take my baby to another hospital.
They brought Henry over to me and it was.... so hard. I put my hands on the isolette and whispered "goodbye" and "I love you" and...they.were.gone.
Russ sat down in the chair in the room & we just looked at each other.
We didn't cry.
We were in shock.
Russ told me he was going to go home to the kids and go to bed and I remember being so angry with him for leaving me. I remember trying to stay awake out of spite.
I was so mad.
At Russ.
At me.
At life.
I finally fell asleep.

I honestly don't remember much about the beginning of the next day, but I do remember my mom and sister Missy coming to visit me around noon
(they ended up being the ONLY people to ever visit me in the hospital besides Russ) . They came into the room with flowers and told me they had been to the other hospital to see Henry. My mom had brought Polaroids with her of Henry and before showing me, she tried to prepare me by telling me about the wires and tubes...I turned the photos over and didn't think he looked "that bad". I commented on how nice and chunky he looked and smiled with my mom & Missy while I listened to how the NICU was caring for him in Atlantic City.Russ came in later in the day and brought me pizza and told me all about his visit at the other hospital and the jealousy pangs had begun...
That night, I went to sleep and around 3 am I woke up, turned on my lights, looked at Henry's photos and cried, and cried, and cried...

I couldn't stop.
I cried so hard it hurt my lungs.
I wanted my baby. I wanted to hold him and I felt robbed.
I called my nurse into my room and told her I wanted to go home. I told her I
needed to go home. She tried to calm me down and eventually brought in a therapist who comforted me the rest of the night and morning until Russ could come to sign me out and take me to my baby....
Once I was out of the hospital, I quickly told Russ he could take me to the hospital and I was staying all day, even if the hospital told me I couldn't.We arrived and I had my first real taste of the NICU...
We washed our hands and I was wheeled into the room and next to Henry's bed. He was hooked up to a whole bunch of wires and receiving CPAP, which is Continuous Positive Airway Pressure. The nurses took Henry out of his bed for a few minutes and took his CPAP off and allowed me to get in a quick cuddle before putting him back in his bed.I was only able to sit next to him, with my hands on his feet and felt so lonely, but happy to see him at the same time.And, honestly, I wasn't alone.There were lots of other babies in the NICU and Henry was definitely one of the biggest (which gave me some comfort). There was even a 22 week preemie named "Star" that had been in the NICU for 3 months already. She was amazing. Her eyes were open and she was alert and she gave me such hope....
For a few days, it just seemed like Henry was keeping with the status quo and then, all of a sudden, he was able to breath room air alone and the nurses were giving me bottles and we were trying to feed him. He took to his bottles nicely, although he gulped a lot and his O2 levels would drop rapidly as soon as he finished eating.Within a few more days, Henry was even more stable and he was moved into the "Step-Down Unit", which is just as it sounds, a step down from the NICU. It was an exciting day for us, because it meant we were one step closer to going home :)
April 1st, we were called in the morning and told to bring our diaper bag and car seat. Henry was coming home!I think Russ and I soared to Atlantic City to pick him up. We were SO excited, we talked nonstop the entire drive and we were both anxious and annoyed that the elevator seemed to take forever to get to Henry's floor.We walked into the SDU and were met with sad faces.Henry wasn't coming home.Worst April Fool's Day joke EVER.I cried. I yelled at the nurses. I cried some more.
They were concerned about his O2 levels and wanted him more stable when he drank his bottles.I was so angry, but I knew why they were keeping my baby there. I was heartbroken.I spent the entire day just holding Henry and crying.He held my hand and looked at me while I sang to him and while I cried on his little nightgown.It was a sad day for me. A hard day.Two days later, we were called at home again and told Henry would be coming home and I made my nurse swear to me that we weren't going to walk into the SDU and be told that he wasn't. She promised they would let us bring Henry home and Russ and

I headed out again with our carseat and diaper bag and my itty bitty preemie outfit that my mom had bought.
(they weren't as easy to find back in 1999)We walked into the SDU and were greeted with smiles and hugs from the nurses. The other moms congratulated us on getting to bring Henry home and I quickly dressed him for his portrait and put my teeny tiny baby into the car seat bed. I had to use supports around Henry that were made by a friend so that he could be more secure in his car seat and then... we were wheeled downstairs...
I am certain that I smiled the whole way down and both Russ and I were like new parents as we drove home from the hospital, looking at him and checking that he was breathing every few seconds. Sure, we had 5 other children at home, but we had never experienced
THIS before.
Henry was home...April 3rd, Easter eve. Our baby had come home for Easter.


Our excitement was short-lived, however, because just 15 days later, Henry ended up back in the hospital with RSV.
He went into a different hospital this time, one where I knew my favorite pediatric pulmonologist, Dr. S, was on staff and I knew Henry would get all of the care he needed. Dr. S pulled strings for me and allowed me to room in with Henry even though I wasn't nursing and I was able to stay with him the entire week he was hospitalized.
While he was there, he had a whole bunch of tests run and was diagnosed with reflux, which was likely the cause of his O2 levels dropping after feeds. Henry was placed on an apnea monitor, special formula thickened with cereal, reflux medication and was prescribed a reflux wedge for sleeping.
I came home with a list of rules to follow, but also with so much more comfort...knowing I would be alerted to any oxygen problems due to his monitor. I know some moms find monitors annoying, but it gave me great comfort.

Life with Henry that first year was a challenge, but it was also so rewarding. He received intensive therapy for many months after being diagnosed with cerebral palsy and although there was a point his therapists thought he would never walk, I had faith and by the time he was 16 months old... he was doing it, without help.
He was amazing to watch. He was such a hard worker, even though he seemed to have challenges thrown his way all the time,

including many difficulties with feeding and speech. He just worked and worked so hard and not once gave his therapists or Russ or I any trouble. Everything he did, he did with a smile. His nickname for years was "Handsome Happy Henry" because he never failed to flash a grin at everyone who looked his way.
You'd never guess the struggles he faced in the early part of his life and you certainly wouldn't guess it these days either...
Henry is my gung-ho guy. He is the first one up most mornings and wakes with an amount of energy that
can make us crazy astounds us. He is bright, energetic, happy, emotional and active. Very active.
And, every time I look at him, I am amazed. And blessed.

And, life with Henry, prepared us.
Years later, when Henry was 7, I gave birth to Emma and Will at 36 weeks gestation...

Technology has changed SO much in 7 years! My doctor and I both knew what to expect this time around and I knew exactly what signs to look for, so we were able to prevent a very serious outcome for my twins, just by knowing my history and my body.
Although Emma and Will came early and had low birth weights, I had been given steroids to prepare their lungs and they were able to come home from the hospital with me just 4 days after their birth.
It amazed me.
We've has quite a bumpy road with Emma and Will since they were born, but all of the things I had experienced with both Teddy and Henry had at least somewhat prepared me for what was/is to come at each fork in the road.
Sadly, so many babies are still being born premature, some due to medical issues that can't be helped , but some just due to lack of knowledge. There are so many stories of hope, like Henry's (& Teddy & Emma & Will's), and so many more that are just waiting to be heard.
Today is the day to tell them.
During Prematurity Awareness Month.
Fight for Preemies!
Learn more
HERE or
HERE.
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