A story of premature birth and the NICU roller coaster

Saifs first few weeks in the nicu….

on September 28, 2012

The first few hours in the hospital were a fog for me. Firstly I was in shock and secondly it was literally a blur since I forgot my glasses in all the panic and excitement. After I delivered the placenta , I sat in labor and delivery waiting…..and then a special transport nurse came through. I got to see my son…we were reunited after his shocking arrival. She said we only had about two minutes …literally …to see him. He was so small and his skin gelatinous and transparent. Still I thought he was perfect. My husband and I sat there with my father trying to understand what happened…why …what did I do wrong for him to come so early. A Neonatologist came to talk with me and tell me what to expect. How many complications he could encounter and what machinery he would be on and long term issues he would face….it was all to much information at once. Eventually I got a room and they let me go down to his floor to see him…only after I learned how to use a breast pump. Of all the things that could go wrong with preemies, it seemed the list was growing for my son. He was on antibiotics for possible infection, he was on a ventilator, in a Giraffe ( Cadillac of incubators), he had several iv lines and needed surfactant for his lungs and medication to close up a patent ductus arteriosus or PDA for short. He was on a cocktail of medications for blood pressure and diuretics for fluid overload . He weighed in at 1 lb 10 oz. ,he was just about ten inches long if memory serves me correctly. They gave him my breast milk through a feeding tube. We patiently waited for him to pass meconium and to urinate. His platelet count was not where it should be and I quickly learned what a left shift was. I was researching and asking drs all kinds of questions so I could keep up with the medical lingo. At one point they said the good news is he doesn’t have a brain bleed and he would have had it by now. His chances for developmental delay increase significantly with this. They explained the complications. Of course ,two days later he did have a bleed. Major problem number one……brain bleed, miracle….it resolved on its own over time and with many prayers . Major problem two was an infection they couldn’t figure out after tons of medications and bloodwork. They gave him platelets and blood transfusions. His ups and downs daily were largely due to this mysterious infection. At about a month in ,they switched doctors or teams as they called them. This proved to be a life saver. Saif was diagnosed with Cytomegalovirus or CMV. I had no clue what this was, but it nearly took his life about a week before he was diagnosed. I researched this topic tirelessly and the Doctor on duty at the time was very helpful. He said that he would arrange for me to be tested to see if it was congenital. They also checked my sons retina to see if he got it from the birth canal. The dr said he was 95 percent sure it wasn’t congenital but instead from the blood transfusions. He went about his business trying to research the donor lists and samples. Mysteriously the samples were thrown away sooner than is standard protocol and he said that despite my test results confirming I wasn’t the culprit ,the infectious disease specialist decided it was congenital. If the results are in black and white, how can you look me in the eye and say its my fault? This would be a major issue in the medical records where they confirm it’s hospital acquired ,but later recant this to fit the story they painted when he died. Hospital staff strongly suggested the hospital was covering this up as time went on ,but alas in the end due to “doctored” records we weren’t able to seek legal recourse. In any case he was treated with a six week course of antibiotics, despite the staff admittedly not knowing anything about cmv and it’s lasting effects on babies. They gave me printed material from the Internet. I could have gotten this myself. The only thing we knew for sure, was that his hearing could be compromised, a side effect of the meds. By this time he was on nitric oxide to help with his ventilation. He responded well. His oxygen requirements went all the way down to a high flow nasal canula. He didn’t like this too much ,so he went to sipap. At this time it was August ,and Saif was moved to a room for infection control or so we were told. The staff wasn’t using proper contact protocols because they didn’t have experience with CMV, which is spread through saliva and urine. I pray no other babies got sick from cross contamination. Though I wonder if that’s how my son got it ,if not from the blood product, because the friends I made in the first nicu room ,were suddenly all dispersed and I wasn’t able to compare notes anymore. I got wind that at least two other babies had CMV there, but they weren’t sick enough for contact protocols allegedly. On top of all this ,I was feverishly pumping milk to store for my son ,when I overheard that someone left the milk freezer open and some mothers lost their milk. After prying this info out of the lactation specialist, of course my milk supply was in this freezer. She lied to me to say I only lost a few ounces, after a nurse checked, it was my whole supply and all the lactation woman could say was ,sorry I guess we need an alarm on the freezer. That’s ALL she said. Breast milk is a HUGE factor in survival of preemies . They started mixing formula and breastmilk which I told them several times he wasn’t able to break down but they didn’t listen until he started vomiting and had hard stools. Also he had a test to see if his adrenals were working which came back they were. This led to a thyroid work up which showed his tsh to be 20.1. If you know anything about thyroid issues, this number is so far off the chart it’s beyond ludacris. As the signs of thyroid mounted, the complications also grew. At this point he was in a crib and on the conventional ventilator ,which was a vast improvement for him. He looked like a normal baby and he was sucking his thumb and holding a pacifier. He had nice black hair like his dad, though he would loose it completely due to thyroid problem. He smiled and moved around responding to stimuli like a normal 3 month old. We were told if they could keep him on the road require little to no oxygen supplementation ,he could go home as early as November or late October. They made it seem as though the vomiting was just a mechanical issue from his feeding tube needing to be replaced. I felt it was the thyroid in my gut but they said no. The medical papers would prove they knew he had a problem ,but ignored endocrine specialists suggestions to start levothyroxine. This would prove to be detrimental. One night he was having trouble moving his bowels and I had told them it was his formula, but to no avail. They at least agreed after much debate, to give simethicone drops to help with gas. I left that night and told the night nurse I would call to see how things were since I felt uneasy and had high anxiety. I knew something was wrong. Around this time, they saw a pocket of fluid in his chest which ended up reabsorbing but they thought this was a chylothorax or a hemothorax. Either of these is bad news. They could explain what was going on with his vomiting and bowel issues, as these conditions effect the lymphatic system, or may stem from a blockage. Later that night I called to find out that they had to reintubate my son because he pulled his tube out. Now I don’t know what really happened that night, because at one point they said they “worked on him” to get him stable for half and hour. The next day I came in and he was not himself, crying a lot and nothing soothed him. He had finger like marks on his head to the right of his forehead. They said this was from an iv line. I wasn’t satisfied with how they approached the next few days, because his breathing was crackle like and he just didn’t settle. I knew something was wrong. Things changed for my son majorly after this night. We celebrated Halloween ,and a nurse practitioner ,with a terrible bedside manner, gave him a treat and was so nice that it stunk of a coverup. We didn’t know it then(October) but in December we found out by accident that he had a broken rib. The 7 th rib to be exact. A nurse told me it was healed ,which was great, but how the fudge did this happen. Why were we not notified. This made sense why the cracking breathing happened and why we couldn’t sooth him ,and why they upped his pain meds after he was nearly weaned off. This is beyond absurd and shady and yet no explanation was ever given. When I asked I was told… I will get back to you. They never did, and within 48 hours my son was on max ventilation and swollen beyond recognition. In my video that I added, you can see the progression of this. What really happened that night? We theorized that maybe, whether neglectful or accidental, somehow the tube came out and they had to bag my son, or use CPR ,which would have cracked his rib for sure and caused the finger marks on his head. ( later about a week after the swelling started, he had three finger marks on the back of his head that became a bedsore and later was infected and in part lead to sepsis and his death)Also this would explain the hemothorax they passed off as chylothorax. Did they cause a diaphragmic hernia? Yes I’ve been researching theories, and possible conspiracy theories, because we have no real answers. At this time in October they sent the pediatrician discharge plans, and this mirrored our understanding that he would go home. Well after this incident, we got called in to meet with the dr ,who had not made herself available per our request for two weeks ,to tell us he had a recurrence of cmv and that he probably won’t make it. This began their badgering to get us to pull the plug. Why would we ever consider this especially without a real reason. They said his lungs were failing even though the week before he was progressing. They gave a bogus diagnosis of cmv recurrence. He just finished meds for it two weeks prior, maybe less. At this point they would send different hospital staff in to talk to me so they could try and convince me daily to pull the plug. The social services woman came in and said in a certain tone, “what do you see when you look at him? He is SICK!!!” I said ..I see my son who responds to me and his father, who we love, who was fine up until November 4th( I didn’t know about the rib from last week of October which probably had a large part in all of his later problems ) I said…I know he is sick, I’m not stupid, I’m not denying this but nobody can tell me why this change happened all of a sudden. I won’t let him go without a fight, neither will my husband. They tried to pit us against each other, asking us personal questions and religious questions. A doctor friend of ours told us this is classic, they pretend to be your friend to get into your head so they can have an easier time convincing you to pull the plug.they even tried listening to our conversations outside my sons room. They followed my family into the waiting area and much like high school kids, write notes and passed them. A nurse admitted some if this to us and my sister caught them following her and eavesdropping. This got really shady really quick. I had mostly believed up till this point ,they were just giving the facts and trying to help my son. Even though i always suspected they weren’t doing the very best they could. Our favorite nurse seemed the only one on our side, even if she agreed with drs choices, at least she was honest and took superb care of our son.( After my son died however, this nurse invited us to dinner as i thought we became friends ,and she said she would like to keep in touch, she vanished without a trace after we requested medical records. Did they tell her to stop talking to us? Was she really told to try and get close to us to see if she could find out if got got legal counsel) other nurse did this)What happened next would prove to be emotionally trying to say the least.





One response to “Saifs first few weeks in the nicu….

  1. mmmarzipan says:

    I am heartbroken for you, the loss of your gorgeous, precious baby and the medical mistreatment you all had to suffer. I am at a loss for words…

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: