It has been a ‘rollercoaster’ to say the least. This past year has been more overwhelming for every single person I know. Trying. Testing. Struggle upon struggle. Trial after Trial. My family included. Our summer isn’t to be compared to anyone else’s as worse or less trivial than any other but simply to relate to the many people who I know have had such a rough year; and those who may have to experience the same or similar things in the future. I hope to be encouraging. I hope to offer some glimmer of hope as I had a hard time seeing it at first myself…well honestly for a little longer than at first. Hearing the words NICU never meant anything to me before this other than a place where sick babies go. I know now that it is that…but it is so much more than that.
Our experience started before our son was even born. We had been in and out of the hospital so many times I can’t even count them on my two hands. We had spent countless hours in the ER with the only result being ‘bed rest’ and
‘oh you’re only 15 weeks but that pain that makes it impossible for you to stand up straight… probably just the baby kicking.’
Yes, a doctor told me that my pain in my belly that made me cry while being unable to stand up straight was simply…the baby kicking. I was then sent home.
Everything started to be consistent in MARCH. 7 hour stays in the ER. Ultrasounds for bleeding. Low lying placenta. Bleeding. Pain. The medicine: Bed Rest. I wish I had stood up for myself because looking back now, it was obvious something was wrong. But our GYN/OB office led us to believe that it was normal.
Easter weekend was spent in the ER. Kidney Stones? Baby Kicking? Bad Dinner?
The next trip to the ER were from contractions that I timed… 3 minutes apart on the dot. I was 23 weeks. They hooked me up to all of their monitors. The contractions didn’t show up on their monitors. I must have just eaten something strange. Or maybe I was having Braxton Hicks. Even though the pain on my face was obvious to my husband, the nurses didn’t seem to think it was anything to be worried about. Bed rest.
A few days later it started up again. Every 3 minutes. Excruciating pain. I couldn’t get up. Off to the ER again. I was 24 weeks now. Hooked up to all the monitors at Labor and Delivery. Finally the nurses, who now know me by name, can see what I’m feeling. Although it doesn’t LOOK as painful as they feel. I was given a shot of terbutaline and a RX to stop the contractions. And of course, bed rest. I was sent home on strict orders.
Later that night, my water broke.
I didn’t realize it at the time. We had so many weird things going on that I just shrugged it off as another thing and if it happened again, I would go in. Needless to say, that was the last night my husband and I slept alone.
At 6 am I knew something was off. I told my husband I was going to go back in. Just to make sure. He’d be just a few minutes behind me. He got ready for work and took care of the dogs. I was checking in, barely able to see the papers through all the tears. I was upset. Scared. Sick of being in the hospital….and barely 25 weeks pregnant.
Within a few minutes, my husband was there and not even a few minutes after he came into the room we were told that my water did indeed break. And that was the start to the hardest summer we have had together. Ever.
The minute the nurse said my water broke, it was a race. A race to stop the contractions. To get steroids on board so our baby’s lungs would have a fighting chance. To get me into a permanent bed for the forseeable future.
I wasn’t leaving the hospital until we had a baby.
3 days or 3 months… we were admitted. I broke down. I couldn’t talk. I couldn’t wrap my mind around what any of this even meant. How would it be possible that I could have this baby now? His eyes weren’t even open yet. He was barely starting to look like a human at all. I had never prayed so hard in my life. The emotions were unexplainable. I was in a daze. I couldn’t even call my mom. I had my husband call her. She was on the next plane out. We were beside ourselves.
After those first few minutes when we were told we were admitted, it was doctor after doctor. I was given steroid shots immediately to help our baby’s lungs grow. I was put on magnesium sulfate for two days. Holy crap…. if you’ve never been on that stuff…it is just awful. I felt like I was standing on the sun. I couldn’t see straight and I felt like I had the worst case of the flu. The magnesium was to stop our little man from coming so that the steroids would have a chance to work.
Later that morning we had a visit from one of the NICU doctors. Probably one of the scariest moments of my life. She was unbelievably sweet even though she was telling us that our baby had a:
‘50% chance of surviving this.’
If he did survive, there was a laundry list of things that could happen to him. From cerebral palsy to blindness, that list was…there are no words. I think somewhere around the 15th problem he could have, I zoned out. We were so overwhelmed I didn’t know what to think. What to do. What to say. I was basically just told my baby may not live. And if he does, he’ll most likely have some life altering issue.
I turned on the TV.
I watched Friends.
I tried to empty my brain of reality.
My mom finally made it in. Without her we would have probably lost it completely. And we were pretty close already. She took care of everything at our house. Brought us food. Things to distract us. Love. A sanity saver. She gave my husband a break during the day so he could get outside.
At this point I had been in the hospital L&D for3 days. They had taken me off the magnesium drip. Within an hour, the contractions began again. Despite all of the hopes that maybe baby would be able to stay put for a while…
(those being our hopes… one of the specialist doctors came in and told us that in his many years of experience, and my chart, this baby would be born within 3 or 4 days.)
it was day 3…and it wasn’t looking like I would be on bed rest much longer.
Another one of the doctors we had seen recommended we get an amnio test. He wanted to see if there was an infection. The amnio sucked. There was the tiniest pocket of fluid for him to extract and he had a hard time getting it.
Turns out, that specialist was right.
After a couple of hours he came back and I will never forget him saying,
“It’s time to have a baby.”
I had a placenta infection and our little man could not stay in there any longer. He is such a smart baby man and already knew that didn’t he?! I was still having contractions and the doctors needed to move it along by inducing us further to help get him out. Poor little guy was very stressed out. His heart rate kept dropping with every contraction.
We were afraid they’d have to take him out through a c-section. They didn’t want that because he was so tiny. They estimated him just over a pound give or take. THANK GOD our little genius pulled it together long enough to be born naturally. I told my husband to get the doctor because he was coming NOW. The doctor came in to check and said,
“this baby will be here in ONE MINUTE.”
It was at that moment when everything came full circle and for me, it was real. It never seemed real before then. It seemed like seconds from the time she said one minute and our room was filled with what seemed like a thousand people. There were 3 L&D nurses, 3 NICU nurses, the OB and the NICU doctor.
I was shaking. I couldn’t believe this was happening.
I didn’t have time to breath before our baby was born and handed off without even a look to the NICU staff.
I remember asking if he was breathing over and over. I finally heard the doctor say,
‘Ok, the baby IS breathing.”
Relief. The best moment of my past few months was now… when the dr brought over our son long enough for me to kiss his nose before they ran him off to save his life. He was all wrapped up. All 1 pound 12.8 ounces of him. He was so so so small. Scary small.
I didn’t know if I would ever see him alive again in that moment. I wasn’t allowed to see him for a 3 excruciatingly painful hours. The longest hours of my life. My husband was able to go and take a couple of pictures for me. I had an epidural and wasn’t able to leave yet.
They in no way could prepare me for what I would see when I actually saw him in person. He didn’t look that small on his phone. He looked like a newborn baby with a cone-shaped head. But a baby. I couldn’t have fathomed just how tiny he was until those 3 hours later when they wheeled me in to him. FINALLY.
He was a beanie baby. Literally the size of your standard issue beanie baby. His tiny leg was as long as my index finger. His little hand was as small as my fingertip. I could touch him, but only for a second. Only as lightly as I could. He was intubated and needed to be left alone. By himself. Without contact. He was too fragile. His skin too sensitive for touch. He was helpless and small….he was mine. Our son.
Our little miracle born at 25 weeks and 4 days. 1 lb 12.8 oz. 13.25 inches long.
And so our NICU stay began. We were allowed to see our son anytime of the day or night (except for the few times they had a shift change). We were able to sit by his incubator all day. Anytime we wanted.
The first few days were a blur. ‘W’ as we called him, wasn’t to be moved. He was in danger of getting a brain bleed so he had to stay flat on his back for 5 days straight. We could not hold him. I could barely touch him. He had wires and tubes coming out of every thing. All over him. He was perfect though. All 10 fingers and toes. Tons of hair and a mouth just like his dads.
We would get to put a tiny but of milk on a q-tip and rub it on his tongue while they fed him. Something to taste while a feeding tube down his throat filled his belly.
Those 5 days were long. Just waiting for them to pass so he could get a head ultrasound and check the status of a bleed. After 2 days we were able to extubate him. The staff was pretty impressed he was able to get off so quickly. He was put on oxygen in its place. He would have what we learned to be called desats without it. He wouldn’t get enough oxygen breathing on his own. He needed the extra help..for the forseeable future. He passed. No brain bleed!
Now that W had passed the brain bleed ultrasound, his nurse that day asked:
“So did you want to hold him now?”
I couldn’t even answer. I just nodded, unable to speak from the joy overtaking me. Getting him ready to be held was a chore in itself. It took 3 nurses to get him ready to be moved and to take him out with the tubes and wires draped all over him. I sat in the kangaroo chair and just waited patiently for them to hand me my son.
It had been 5 days since he was born.
I was so overcome with excitement. My baby boy finally in my arms.
He was so tiny.
He was just 800 grams. A feather. His skin was just skin. No muscle or fat on him. Skin and bones took on a whole new meaning. His incubator was at 80% humidity so his entire body was moist and warm. They put him on me chest and tucked him in snug into my shirt.
And we sat there together for one hour.
The best hour I could remember in a very long time. Our hour. (gotta love english ;))
I remember my heart slowing down. I was finally relaxed.
I counted his fingers.
I smelled his hair.
I touched his cheek.
I could only touch him lightly. No stroking his arm. He was too small and early that any amount of stimulation was extremely overwhelming to him. Kangaroo care was the best thing for him. For me. For us.
The very next day W got an infection. He was lethargic. Sleeping. Barely moving. It took everything in him to hang on to life and fight. We couldn’t hold him for 6 days while he fought off a potentially fatal infection. It was horrible. Siting next to him. Helpless. Unable to do anything for him but wait. I looked forward to every 4 hours. That was when I would be able to change his micro diaper.
A week later, W picked himself back up from his infection. He beat it. He has such a will to live and be here with the world. And it was nearly 2 weeks after he had been born that Daddy was able to hold his son. W looked even smaller on daddy’s chest. He was perfectly content with his father. A memory I will never forget. The picture of father and son forever engraved in my mind.
Since W had been born the doctors and nurses had heard a murmur in his heart. They’d listen every few hours and it was still there. The cardiologist was called to give W an echocardiogram. I had no idea that a person that small would have such a strong heart.
The results showed that W had a PDA. Basically, a valve that should close after birth was still open. This open valve caused his heart to work harder than it needed to in order to pump fluid through his tiny body. That tied all together with his lungs having to work hard to breath since they were so immature. All of these things worked so closely together that one problem caused other problems that otherwise wouldn’t be there. Another waiting game. Praying the valve closes on its own so they don’t have to do a heart surgery.
W had spells often. Always forgetting to breath. Need stimulation to remember to take a breath. To hang on. The doctors put him on caffeine to try and keep his heart rate up so they didn’t have to reintubate him. Between all of the milk, IV fluids and meds, W’s little heart had a hard time pumping so much fluid with the PDA valve open. He was put on diuretics to keep extra fluid out.
W had to have a blood transfusion because his red blood cell count was too low. He already had an infection and they didn’t want to risk another.
At one month old, June 16, 2013 W weighed 2.6 lbs!
The next few months were filled with sitting by the incubator. Changing diapers and feeding W every 4 hours. Blood tests. Medicine changes. Doctor after doctor poking around at his fragile body. We learned how to bath a 3 lb baby…a lot harder than it sounds! We had to learn how to feed him with a feeding tube. Position of the tube is a lot more important than I thought. Sometimes his food would go in too fast and it would all come back up. He would have a ‘spell’ were he couldn’t breath. We’d have to lower the tube. His heart rate would drop when he was fed so we had to be mindful of how fast his food went in. We learned the different numbers, beeps and alarms on his monitors. Each one had its own set of warnings and scares. Hearing an alarm never got easier. My heart would always skip a beat anytime it went off. Which seemed like always.
Fast forward to a pound later. We would call the NICU every night before bed to see how W was doing. How many ounces had he gained? Did he food go down the tube? What was his temperature? And the most important, did he poop?! One of his biggest hurdles was avoiding a gut infection and with every poop diaper we were one step closer to avoiding that, so it became a big deal to us.
Then there was a day that I walked into the NICU, said hello to the front desk clerk, slowly meandered my way over to Walters incubator. It wasn’t there. Our big boy baby was in a crib! A hospital crib, but a crib nonetheless! It was a HUGE deal! W had to be able to regulate his body temperature in order to graduate from incubator to crib. And he finally was able to! We still had to make sure with regular temp checks but he was growing up right before our eyes.
It was a great day! It seemed like forever to get him out of that incubator and now a crib!
W finally got to move up from preemie diapers to newborn diapers. I had no idea that they even made diapers so small. When he was first born the preemie diapers were too big the had to be folded in half.
For the longest time W’s oxygen was from a vapo-therm machine that could regulate the oxygen very precisely. He finally got moved to oxygen ‘off the wall’ which was a huge deal since that is basically what regular people require when they’re on oxygen!
Being in the NICU was so difficult. So challenging. A blessing in disguise. Every emotion you could imagine. The day finally came when the doctors and nurses started our discharge planning. I almost couldn’t believe it. Walter had to pass a few tests in order to be allowed to come home. He had to sit in his car seat for 2 hours without any breathing spells. Which he did beautifully!
After being taken off his diuretics for one week and having no spells, the docs decided that W was ready to go home! He had to come home on oxygen since he needed a little extra help due to his chronic lung disease. We had an appointment with the oxygen supplier and received all of our tanks, 50 feet of hose and an at home machine that made the ambient air into oxygen. I couldn’t believe after all this time, we were finally taking our son home. 92 days later.
We were home for 5 days! The best days we had been waiting for. Until a few days in, W was having trouble breathing. He stopped eating and was lethargic, tired, and just lay there. We had just been to a doctor’s appointment when I just couldn’t watch him labor with his breathing any longer. Something was wrong. We decided after talking on the phone with his pediatrician that we needed to take him to the ER.
Not what we had planned for the day.
We were readmitted to the NICU. Poor baby boy couldn’t do anything but struggle to breath. He wasn’t eating and didn’t have energy to do anything else. It was all he could do to take a breath.
After a couple of days of testing, the docs decided that W’s heart was working too hard to pump all of the fluid through his open valve, which caused his labored breathing. His lungs couldn’t handle the extra work. He was put back on diuretics. We had to spend another 10 days in the NICU before we were sent home for a second time.
Being home and then having to go back to the NICU was almost worse than being admitted the first time. I hid in our corner. I didn’t want to talk to anyone. We had a little routine, a family at home, a life with our baby boy. I was so devastated to have to take him back in.
But that boy perked up a few days after being on meds and it was decided to keep him on them for the forseeable future. To this day, March 26, 2014, he still has an open heart valve as far as we know and is still on diuretics. Hoping that this will be over soon and he can be a regular kid!
We still see doctors regularly, at least once a week. We are hoping that by his first birthday we will be a normal, care free family!