“You won’t lag behind, because you’ll have the speed. You’ll pass the whole gang and you’ll soon take the lead. Wherever you fly, you’ll be the best of the best. Wherever you go, you will top all the rest.” – Dr. Seuss
At 23 weeks I was diagnosed with a short cervix and was put on complete bed rest. At 24 weeks, I started having contractions, my water broke, and I went into labor. A half-hour before I gave birth, I was taken up to the 5th floor to do another ultrasound and at that time everything was normal. Five minutes into waiting in the hallway, my stomach started turning and I began having severe contractions. I was screaming on the top of my lungs and the nurses on that floor were paging the doctors and the NICU team to come up. Ten minutes later, I felt something shoot out of me but there was nothing. One minute later, without even pushing, my little preemie made his way into this world, weighing 1.45lbs and measuring 12.4” in length.
After being pulled into a room, my son, Liham was placed upon my belly. Ten minutes later, the NICU team came up and took him from me and intubated him right away. They took him in an incubator and there began our NICU journey.
The journey was not easy. It was quite literally like a rollercoaster. Some days were good while other days…I felt like I couldn’t breath. I always blamed myself. There were times when I was in the NICU with Liham and he would stop breathing and the machines would go off. During those times, there were five to six nurses and a doctor working on Liham and that broke me!
But watching Liham fight is what gave me the courage. I went to see him everyday and I would sit there and talk to him, read books, or hold him on my bare chest and sing to him. Sometimes I would just watch him sleep on my chest. The nurses and doctors were such a good support system every time I was there. They were amazing!
I had trouble producing milk but I gave every drop that came out. I was only able to produce 5ml of milk in each pump. I took medication, did massages, EVERYTHING! But nothing worked. Eventually I had to stop because my milk production stopped. By the time Liham started requiring more milk the nurses transitioned him to Similac and he did fairly well on that. He had an NG tube so by mouth he was only able to intake max 10 ml and he would get tired.
Doctors had sent Liham to another hospital for a PDA ligation. The night before his surgery he had a high fever and he was put on an oscillator. Doctors postponed the surgery. Two weeks later after fighting with doctors, they finally switched him to the ventilator and completed the surgery. Everything was a success! Liham was breathing better so they continued to keep him on the ventilator. Liham was born with stage 3 ROP and the eye doctor had injected both of his eyes with Avastin Eye Injection. Doctors closely monitored him every week.
After being sent back to his birth hospital, Liham started doing fairly well. He was out of the incubator and transitioned into a crib. A month later, doctors were able to transition him to a cannula as well. A few weeks later, my husband and I requested to bring Liham home because we didn’t want any other delays with his developmental skills. Doctors were okay with everything and trained us how to put in the NG tube and how to use the oxygen tanks. They set us up with everything we needed to care for Liham at home. After being in the NICU for five months, we were finally able to bring our little preemie home!
Being home with Liham on the cannula and an NG tube was nerve-wracking. I felt like I couldn’t leave him alone. Every time the pulse oximeter alarm went off I ran to check on him. He was always fine. His first appointment with his Pulmonologist provided a bit of stress-relief because he said we would only have to use the pulse oximeter at nighttime while Liham sleeps. Thank God! That machine had me on my toes! After that, I started getting used to all the oxygen stuff.
Another stressor was putting the NG tube in and stopping Liham from pulling it out. I really disliked putting it in because I felt like I was fighting with him and him screaming at the top of his lungs did not help the situation. With all this going on, I went into depression. We moved to Indiana from NY one month after Liham came home. I was always on edge and at that time it was just me and my husband all alone with Liham . I had to do most of the caregiving because my husband was at work. I would break down into tears and keep blaming myself for everything this little one was going through. One month later, Liham pulled that NG tube out all on his own and he started finishing his bottles. That tube was long gone!
Everything was going well until a month after Liham was admitted to the PICU due to pneumonia and was requiring high flow oxygen. We were there for ten days and Liham did well and not much was required. It was stressful but this little one fought his way through.
After his discharge, We resumed therapy and got him a helmet because he had a flat side on his head. Three months of wearing the helmet helped a lot and improved his head shape as well. A few months later we moved to New Jersey to be closer to family. Liham also had his laser eye surgery done, which was a success because he is tracking everything and everyone.
We continue to follow up with doctors and the only concerns right now are weight gain and projectile vomiting. Liham has a hard time digesting his food and gets so backed up that he throws up everything he eats. We are waiting for clearance to do an endoscopy to get to the bottom of this. It is very frustrating to see it happen and there’s nothing we can do until we get to the bottom of this.
We started Early Intervention services here and from the beginning to now, the improvement that I am seeing is so amazing! Liham has been working hard and continues fighting every day. He knows what he wants and he will do things when he wants to. He is now rolling to both sides, attempting to sit with minimal assistance, reaching/ grabbing toys, putting pressure on his hands, tolerating tummy time for at least 5 minutes and tolerating standing with the support of orthotics and braces on his legs. He is thriving and we are so proud of him!