Preemie Mom Jessica Shares Zaiden’s NICU Journey

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My son Zaiden was born on December 24, 2012 at 31 weeks and 6 days. He was 4 pounds 2 ounces and 16 3/4 inches long at birth. I had a very rough pregnancy, spending every day after 12 weeks on bed rest due to Hyperemesis Gavardium, hypertension, and gestational diabetes. I had two PICC lines placed, and Zaiden and I both came very close to dying when my first PICC line got infected and I became severely septic. I was ‘hospitalized’ at home until Zaiden reached viability and then was formally admitted.
 
Every day he stayed in was a good day. I missed my two older children – I wasn’t there for their 3rd and 5th birthdays, I missed holidays but I would do it all again if it meant having Zaiden. I went into preterm labor for the first time on December 21 and was given terbutaline, magnesium sulfate, Procardia  and the first steroid shot to help my son’s lungs. Thankfully labor stopped, but I started leaking fluid. I woke up a little after 3am on December 24 thinking I had wet my bed. Because I was on bed rest, I had to call a nurse for a bedpan and when she came in, she looked at the monitor for contractions and rushed right out. That’s when I felt the tightening.
 
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Within an hour, the pain was so bad I was holding onto my bed rails for dear life. I asked repeatedly for pain medication and was denied…my water had broken. My perinatologist finally came in, shook his head at me and said “Yes, you do look to be in active labor…let’s check your cervix. Depending on how dilated you are, we will get you to the OR in a few hours.” He lifted my gown, put it back down and said “Call your husband and tell him to get here quick, you are going to the OR right now.” Then he left. Later I found out my previous c-section site had abrupted and my bowels were protruding… which accounts for the pain I was in. My husband barely made it in time.
 
I waited for four hours to see Zaiden. I was told a nurse would come to me in recovery to show me a picture and give an update on how he was doing, but after asking several times, no one came. Eventually I was to be wheeled to my room. Thankfully, they detour through the NICU so moms can see their miracles. My miracle was hidden behind a C-PAP mask. I couldn’t see his face. After a few pictures, I was told it was time to go. I let myself cry then. As soon as I could get up, I did… and my husband pushed me in a wheel chair to see our sleeping son, whose face we could now see because he had been intubated.
 
I was allowed to touch his hand, his feet, and lay my hand across his chest… but I still felt like it wasn’t enough. My husband touched his tiny ear, and our son looked as though he began crying but we heard nothing. My husband cupped his head and sang a soft lullaby in Spanish, and then our son calmed down and slept.
 
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They tried on Christmas Day to extubate. He lasted less than two hours. The following weeks were touch and go. Zaiden had many Bradi spells…and I was there to witness one where his heart stopped beating completely , and they had to bag him and use CPR. His weight was also dipping. I asked if they would take him off the TPN and try the milk I had been pumping, and he tolerated it okay… he even got back up to 3 pounds, 9 ounces, but then suddenly he began spiting up entire feeds and then wasn’t digesting all his feeds. They stopped it for for days, but he had lost a lot of weight at this point, and when they started feeds again, he wasn’t tolerating them.
 
We had a consultation meeting with the doctor when he dropped to 2 pounds. They wanted to place a g-tube. I found out at this meeting that even though I had asked them to give him my breast milk ONLY that on the day Zaiden began spitting up they had started mixing Neosure with my milk. I was devastated. I felt betrayed, and it all made sense to me. I demanded that they stop the Neosure and give Zaiden my milk only. We had to call in more people, including my case worker before the doctor would agree. I begged him to give me three days of breast milk only before we went ahead with the g-tube placement, and after almost two hours, he reluctantly agreed.  We didn’t see a big change the first 5 or 6 feeds, but by the night of the first day, Zaiden was not spitting up as much. By the third day he wasn’t spitting up at all, and had gained back 5 ounces!
 
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On the fourth day he was on 1 liter of oxygen and we attempted latching him on the breast and he took to it like a pro… like many preemies he fell asleep quickly, but he had a perfect latch and the few minutes he was on was enough for him to get almost his entire feed! I pushed for nursing him once a day, then twice a day, and in two weeks he was off oxygen so I asked to nurse four out of his eight feeds. He was slowly gaining weight and the doctor wanted him to gain more quicker, so I asked him for ad lib (at will) feedings and reminded him that the formula had made him sick. I was granted ad lib feeds, and I was there every two hours. He started at 2 pounds 10 ounces and in one week of ad lib feeds, he was 3 pounds 4 ounces… and we were two months into our NICU stay. The next day we asked if he could come home… nothing except for feeds was keeping him there and the doctor said yes!!!
 
We had to take him the next day to the pediatrician for a weight check, but we could go home. Zaiden was discharged at 3 pound 7 ounces. Sadly, just thirteen hours after we had Zaiden home he was rushed back to the NICU because he began turning blue after a diaper change. He stayed in the NICU an additional six days before going home again, and this time he stayed home. He was discharged at 4 pounds 2 ounces, his birth weight. Although he stayed small his first year of life (he fit 0-3 month clothes at 1 year), he is now 2.5 years old and is wearing 18 month pants and 2T shirts!
 
Zaiden is vivacious, always running everywhere he wants to go, always smiling and he loves playing with toy cars (he calls them ‘vroom vrooms’). And he talks more and more every day.

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About The Author: Featured Parent

Featured Parent

We regularly ask special preemie parents to share their stories on our blog and are happy to consider publishing any mom or dad's story of premature birth and beyond in an upcoming post. To submit your story, email it along with photos to christa@grahamsfoundation.orgor laura@grahamsfoundation.org.