saifsnicujourney

A story of premature birth and the NICU roller coaster

Saifs first few weeks in the nicu….

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.

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My new friends

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These were custom made for me. I ordered them from my cousin who knits and I love them. My son loved his giraffe and zebra animals in the hospital so I felt I needed something to remind me of him. They just came in today.

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This brought me to tears. I think it has comforted me to know that no matter why or when your child is taken, the feelings I’m feeling are normal…..and that it’s never easy…it seems like you never get over it but I’m inspired to see that by having memories and carrying those with you ,even in the form of a simple orange chocolate, can give you …even if for a moment, comfort and a sense of your child being with you in spirit .

Grief: One Woman's Perspective

Have you ever purchased something almost as a way to give yourself permission to “live” in a memory for a while?

I kind of think that’s what I did last weekend.

Jason LOVED chocolate. Chocolate chip cookies (mixing, baking, and eating) and chocolate pudding pie with graham cracker crust were just a couple of his many favorites. One year for Jason’s birthday, we had chocolate cake with chocolate frosting, topped with triple chocolate ice cream and chocolate sauce. Did I mention he loved chocolate?

He also loved chocolate oranges.

I used to buy chocolate oranges once in a while as a special treat – to put in Christmas stockings, in Easter baskets, or just an “I’m thinking of you” time. I haven’t been able to buy them since Jason died. I just hurt too much.

There were lots of things I found that I couldn’t do any more after Jason…

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Congenital thyroid, acquired thyroid problems in preterm/ newborn babies

Please look at this info if you have any concerns or questions about neonatal or preterm babies and thyroid conditions. My son suffered and we believe died from neglected , and know mind you, thyroid issues. He wasn’t treated until two weeks before he died.

http://www.ehow.com/about_5117841_thyroid-problems-babies.html

This is a good link to info on congenital thyroid. What is it and what effect can it have on babies?

http://preemies.about.com/od/takingyourpreemiehome/tp/Newborn-Screening-In-The-Nicu.htm

Newborn screening is very important for babies, but is it accurate with preemies? Should it be repeated? When it’s repeated should it be ignored in preemies or should this be looked into ASAP and treated when necessary? This can cause severe developmental problems like Mental Retardation and even death.

http://health.state.tn.us/lab/Directory/Section4.pdf

http://fn.bmj.com/content/87/3/F165.full

Please look at this info I have posted if you have any question or concern with a thyroid condition in your newborn or preterm baby. Our son had a problem that was ignored until two weeks before he died.

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Loss of a child…how do you move on???? Can you?

Your never prepared for the loss of a child. It can be a miscarriage, stillbirth, SIDS , prematurity loss, sudden death of infant or murder. In any of these cases nobody can prepare you for what’s to follow. I think no matter how it happens you are in shock and the stages of grief wreak havoc on you. You can have all kinds of emotions in one day or even in a ten minute period. In my case my son suffered in the nicu for just over 6 months. We thought we were in the clear at three months then for reasons we still don’t have an explanation for, he got very ill and died in January. I somehow thought he would pull through. Even up until two days before he died I was hopeful. I sometimes feel like a zombie or a robot. I’m just going with the flow, working and business as usual. It’s not because I’m not effected or I’m not grieving in the right way as some may say behind my back. It’s because I don’t want to cry and breakdown in front of people at work or even friends or family. I feel like that’s a burden to put on them. Perhaps a grief counselor is in my near future. Maybe I should already be in therapy. The last few days have been really ….sad. I don’t know why. Maybe it’s because this time last year they told me my son was on his way to coming home. By the end of October they did a complete turn around saying that I should have known he always had the chance of dying. I asked why now at three months. What changed since last week? They kept saying it was his lungs. I don’t believe this to be the issue but either way we are left with unanswered questions and feeling like our son died needlessly. I think of my son daily and lately I’m more weepy then I was even in the beginning. It was the same when I lost my mom. Maybe I’m actually moving from shock to the reality that I will never see him again. I crave touching him, feeling his skin, feeling him next to me. I have visions of how I thought it would be. We would go to the beach and he would feel the sand between his toes, frosting smeared on his cheeks at his birthday or splashing in the bath. I’m lucky we had as much time as we did considering we could have lost him earlier and never knew him( miscarriage etc) . I just don’t know some days,how I can lead such an empty life without him. He was our only son. We had a previous miscarriage and that left a hole or void as it was. I’ve been feeling so empty lately. Watching his videos and looking at pics of him are my only comfort. My husband isn’t dealing well either. He has a lot of anger toward the hospital. They didn’t always listen to us even when it turned out we were right. I guess I just have to take it one day at a time. Maybe one day I will be able to learn from this experience.

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Kangaroo Care for newborns and especially preemies

This is super important. I waited with excitement to try this with my preemie and it never happened. Though later on at about two months old I did get to hold him at times, they kept saying he was to sick for kangaroo care. Isn’t that the best time for it? I know while on the oscillator you can’t do this but he had been on conventional and sipap ventilation as well as high flow canula. Why I never got that chance I don’t know even though I asked and practically begged. It sticks with me, what if this would have made a difference.

My Postpartum Voice

Kanga-what?

Kangaroo Mother Care is when a human mother and her infant snuggle skin to skin with the infant lying prone on mom’s chest. It’s a term coined after the Kangaroo’s close relationship with her little joey who doesn’t come out of mom’s pouch for four months after birth. Instead, joey relies on mom’s warmth, nutrition, and support for his “fourth” trimester. Research has concluded over and over again that this care is invaluable for both human moms and babies as well.

In 2007 a study published in the Oxford Tropical Pediatrics from researchers at the Instituto Materno Infantil in Brazil concluded that Kangaroo Mother Care may prove helpful in warding off postpartum depression. Researchers evaluated mothers at the beginning of NICU care and at the end of their Kangaroo Mother Care. NO mother developed depression during their Kangaroo stay. Let me say that again. NO MOTHER developed depression during…

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Breast feeding is key to better outcome for babies,especially preemies

Breast is best they say, and it protects from many things like Necrotizing Entercolitis . I pumped from day one until the last day my baby lived. I was told this was best and I agree. Unfortunately more than once my milk was lost or wasted in the nicu formula lab. Once maybe an accident but why at least three times this happened that I know of. I feel this impacted my sons outcome because he got horribly ill around the time my milk disappeared the second time. I was told a few different stories but till this day it makes me sick wondering if this in effect helped my sons death come .

Belly Bump

by Stacey Lynn Photography
It is a special honor for me to work with Mom’s with premature babies. These woman have a journey more difficult than I can imagine. As a woman’s labor and delivery nurse, my major focus for them after delivery is to get that baby as much breastmilk as possible. Breastmilk makes the difference in life and death for some preemies; the difference between sickness and health for many preemies; and the difference between optimal outcomes, and suboptimal outcomes for 99% of babies. Breastfeeding a premature baby is extremely challanging, and extremely important.Research indicates that later milk volume is impacted by how soon after birth mom begins to stimulate her breasts. Thus pumping promptly after birth promotes milk production for preemies, or any baby who is separated from mom after birth. Anytime a baby cannot be skin-to-skin on mom directly after birth, the natural breastfeeding process is interrupted. The…

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CMV…what is it, who’s at risk, prevention

I was tested for cmv after delivering a preemie who was later diagnosed with it…I was neg but had immunity built up. They also checked the retina to see if he got it via birth canal and this was also negative. I’m still angry and confused as now it is 8 months since my son died in the nicu and the only explanation is he got it via blood transfusion from the nicu which was later taken back and blamed on me despite evidence to the contrary. Cmv awareness is key.

ehornam

Cytomegalovirus (CMV) is a common virus.

CMV is part of the herpes family of viruses. As with most other herpes-type viruses, once you are infected with CMV, it will remain inactive in your body for the rest of your life. CMV causes few symptoms in most people.

CMV is spread through bodily fluids, such as saliva and urine. It can be passed on through close bodily contact. For example, the infection can be found in small droplets of saliva which are spread from one person to another when an infected person coughs or sneezes.

As at today there is no cure for CMV  Anyone can become infected with CMV. Almost all people have been exposed to CMV by the time they reach adulthood.and is one of the most common viral infections.

 symptoms of CMV infection

Most children and adults who are infected with CMV do not develop symptoms. Those who develop symptoms may experience an illness resembling infectious mononucleosis…

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Should leukofiltered blood be accepted as the certified neg blood?

I strongly disagree with filtering the white blood cells out and accepting this to be cmv negative blood….my son got cmv via blood transfusion and he later died they say from cmv complications

Advancing Health Through Transfusion Medicine

Major transplantation centers have instituted 100 percent Leukocyte Reduction (LR) for their patients and no longer require (Cytomegalovirus) CMV- seronegative blood components.  The Fred Hutchinson Cancer Research Center, the organ transplant teams at the University of Washington and the Seattle Cancer Care Alliance accept Leukocyte Reduction as CMV safe.  

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CMV Awareness

Cmv awareness is crucial, pregnant women are at risk…not enough is being done by healthcare providers to spread awareness

hudsonschallenge

CMV is more common than Down Syndrome, Fetal Alcohol Syndrome and Spina Bifida!  1 in 750 babies will be permanently disabled due to CMV infection.   As you know, I contracted CMV (Cytomegalovirus) when I was pregnant with Hudson during the 12th – 20th week.  80% of his brain was damaged due to what would have presented like the common cold.   CMV Sucks.  And there needs to be more awareness.    Check out this graph from the CDC website.

It’s crazy that I hadn’t even heard of congenital CMV before now.   However, it’s estimated to be the leading cause of deafness in children.  It can also cause blindness, mental retardation, cerebral palsy, and the list goes on.    A little girl at Hudsons daycare is deaf due to CMV infection.  Her mommy and I were pregnant at the same time!  CMV is often prevalent in daycare centers where there are lots of kids, lots of saliva, lots of bodily fluids, etc.  If your pregnant…

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