At 10 days old, baby Mohamad was moved from the Cardiac Intensive Care Unit (CICU) to the step down unit which is still on the cardiac floor but it is a regular hospital room with the normal level of care. Here, a parent must be with the baby at almost all times because the nurses have several children to care for as opposed to the CICU where each nurse had only one or two children. A child can leave the CICU when they are off all major medications. At that point, Mohamad was only on the medication Inderol for a mild arrhythmia he developed after surgery, which is one of the risks, but it is a minor medication, a very small amount, and he was taking it orally. (At 10 months old, after several holter monitors, the medicine was stopped). He was also still on oxygen - which came through a tube into his nose. Also through his nose was a feeding tube through which he was getting breastmilk. He came in on Monday and was out by Friday.
Though it seemed that the worst was over, the surgery and recovery were successful, and we would soon be going home, the challenges I faced in these five days proved to be among the hardest. In part because we were all mentally and physically exhausted from going back and forth to the hospital for over a week, in part from the stress of dealing with doctors and nurses and the ups and downs of the baby’s recovery, and lastly because the kids were getting impatient and wanted to go home.
DAY 1
The new room was a refreshing change. It had a door that could be closed (the CICU is a set of open rooms), it’s own bathroom with a shower (in the CICU i had to walk all the way down and out of the section to get to the bathroom), and it was quiet!! I didn’t realize how much noise those machines in the CICU made and all the people talking and walking by and the monitors beeping and alarming so frequently for every little thing. I had thought that it was finally my turn to stay with the baby to teach him to eat but the nurses wanted to make sure he was okay with having food in his stomach before removing the feeding tube. So my husband stayed with the baby that first night and i went to my parent’s where my kids were staying. By this point, i was driving by myself, thank God i had a natural childbirth or else i wouldn’t have been able to drive. But i waited until i was one week postpartum to drive and it was okay.
DAY 2
The next morning i drove to the hospital and i had packed a bag so i could sleep over with the baby. The nurses were slowly lowering the amount of oxygen and increasing the amount of breastmilk Mohamad was getting and he was doing well. However, during the night they had tried three different times to draw blood from him and they were not able to. His veins were really small and it seems they sent normal nurses instead of more experienced nurses to draw the blood. My poor baby was being tortured! I can’t understand why they would do that to a baby in the middle of night? It broke my heart to hear of that and i resolved to stay the coming night with him. During the day, they came to try to get blood again but i insisted they bring the most expert nurse to do it and i insisted on coming with them to the ‘blood drawing room’ (they don’t want the kids to associate their beds with pain). You would think i was crazy to go but i felt that i needed to be with him to comfort him and recite verses from the Qur’an. So i made du’a and recited Qur’an and Ayatul Kursi and although he cried at first, suddenly he just stopped crying and closed his eyes and the nurse was able to get the blood she needed. By the end of the day, he was off the oxygen and was only left with the feeding tube. I tried to nurse him but the tube in his nose was getting in the way and i wasn’t successful.
That night, my husband went home for the first time to get a good night’s sleep and a change of clothes, though in hindsight it would have been much better if he had slept at my parent’s house with the kids. For the first time, i was sleeping in the hospital, and the kids were sleeping at my parents’ house without me. It turned out to be a poor decision. That night Mohamad kept waking up every hour and i was helpless. He didn’t know how to nurse, and i didn’t know that they weren’t giving him enough breastmilk in the feeding tube. Each time i would pick him up, try to nurse, fail, then rock him to sleep. Then i would put him back in the bed and try to get back to sleep on the pull out sleep sofa. A half hour later he would be crying again. I did this over and over until around 3 am i think when i finally called the nurse and told her what was happening and that i was exhausted. So they took him and later they told me he had been hungry and needed more milk. It turned out the machine was on a slow rate so his stomach was never getting full, poor thing.
DAY 3
Unknown to me, my 4 year old son Ibrahim was also waking up frequently at night crying for me. My mom became concerned because he didn’t seem to be breathing well and called me at 5 am. I told the nurse the situation and drove the 20 min to my parent’s house. I had plenty of breastmilk in the freezer so i wasn’t worried about leaving the baby. I also called my husband and he said he would soon leave to come to the hospital. There was something definitely wrong with Ibrahim. His chest was heaving and he was wheezing and coughing. I had never seen him like that before. He was exhausted and emotionally distraught that i hadn’t come from the hospital to put him to sleep that night. By then it was around 8am. I called his pediatrician and made an appointment to come in right away.
At the doctor’s office, i told the doctor about the situation. The doctor said Ibrahim was having an asthma attack. So he gave him several nebulizer treatments but he was still wheezing and his oxygen was still not ideal. So he said we need to continue his treatment at a hospital because they need the room and insisted we take an ambulance in case the medication wears off while i’m driving. There was another hospital closer by but i told them i wanted to go to Children’s Hospital where my newborn was. I mentioned to the doctor the irony of the situation: my newborn had just been taken off the oxygen and here was my 4 yr old needing oxygen! For the first time in my life, i rode in an ambulance. Ibrahim was so tired he fell asleep on the stretcher. I held his hand through the bumpy ride as the driver drove fast and frequently pressed the brake. At the hospital, he received more nebulizer treatments, took some medication, and then he was back to normal. When my husband arrived he took over with Ibrahim until he was done in the emergency room and i went back up to the baby, who had been sleeping most of the time i was gone. I tried to get some sleep during the day while the baby napped. That day they finally took out the feeding tube and my little Mohamad’s face was finally free of all tubes and i could feed him by bottle. I was so happy that it just about made up for all the struggles i went through that night and morning. His round face, big blue eyes, and dark hair could finally be analyzed - he was a cute mix of his brother and his sister.
That night, i took Ibrahim and slept at my parent’s house, leaving my husband in charge of the baby - diaper changing AND bottle feeding. He insisted he would be fine and that i should go rest and be with the kids. I joked to the nurse to help him out in case he forgot how to take care of a newborn. And to this day, one year later, he is still so attached to his father. Even this morning, the moment he heard his father’s voice he would not sit still with me. It’s no wonder, when his father was the one who was with him more than 70% of his first two weeks of life - everyday reciting Qur’an over him, talking to him, and massaging him in the short times he was awake. At my parent’s house, i continued to pump but now i also had to deal with Ibrahim who had to use his inhaler every 6 hours and take an oral medication every 12 for 3 days. He put up a fight for each one and it took a lot of convincing for him to keep the mask over his nose and mouth and take 6 breaths. Thank God he didn’t need to be hospitalized in that time.
DAY 4
Mohamad was doing well off the oxygen and feeding tube and his arrhythmia was under control and minimal. The doctors and nurses said he would most likely go home next day. So my husband and I decided that he should spend the day with the kids, so i brought them with me to the hospital along with my two brothers who were off from school (it was April vacation week, as is this week that i am writing this, one year later). I stayed in the car until my husband came and took them. He ended up taking them to the Aquarium and then taking them home to spend the night in their own beds. I also needed him to bring a few things from home, most importantly the car seat and frame stroller. Finally, the end was in sight.
That day, the lactation consultant came by to help me try to nurse the baby. It reminded me of when i had my first child and i couldn’t get her to latch on for 3 days. In that time the N-Shield by Medela really helped me. And it turned out i would need it again and the consultant suggested just that. Mohamad was used to eating from a bottle so he just couldn’t understand what he needed to do. It took him a few times to get it with the shield but i didn’t give up. I was confident that it was just a matter of time. The consultant remarked how calm i was throughout the session, and therefore how calm the baby was as we tried various positions with him. The nurses didn’t care how he ate, as long as he was eating. They would want to know how many minutes he nursed and how many ml from the bottle. They weighed the diapers too. So it wasn’t necessary that he learn to nurse in order to leave the hospital, so i didn’t rush it or stress it. I was just tiring to spend the time and energy to teach him and then having to go pump afterwards.
The nurse came in at one point and told me they need to take more blood to see how much of something was in his blood. I told her that the nurses have a hard time taking blood for him so i would rather only do it for extremely necessary things. She went and talked to the doctor and came back and told me it’s ok, they don’t really need that info. I was relieved. It is important to always have someone with the patient in the hospital to be their advocate because sometimes the nurses and doctors make mistakes or forget certain issues. So whenever they would come in to do something i would ask why and for what - just to make sure that it is absolutely necessary and spare my baby of further pain. He has gone through enough.
There was a scary moment that day - Mohamad woke up crying so i went and picked him up. The monitor started beeping - i looked up and saw his heart rate had went up and the rhythm was erratic - his arrhythmia came back. I tried to nurse him but he wouldn’t - he just gazed to the ceiling without a sound. Then the beeping stopped and his rhythm went back to normal and i nursed him. The nurse came in after a few minutes and took the print out from the computer. It was my first personal experience with his arrhythmia and i wasn’t sure if that’s just what happened. The nurse said it was, but she saw that he was fine now. It was really short - like 30 seconds, but my heart was pounding for what seemed like a million seconds after that. How could it be that i was the one that triggered his arrhythmia. Or perhaps it was his fear of being lifted up and down, being in mid-air? Every time i came to nurse him after that i would get nervous - maybe they won’t let him come home tomorrow if he keeps having episodes??
DAY 5
To be continued… Baby Mohamad comes home.
