A story of premature birth and the NICU roller coaster

Diagnosis in the NICU, be informed and aware of the potential illnesses your Preemie faces

on November 13, 2012

There are so many things you wish you had known about Complications of Prematurity before delivering your baby, things you will face that you never expected. You will hear so many medical terms thrown around and potential diagnosis or illnesses your preemie will face, eventually you will be somewhat of an expert. There are many books out there to read up on that will both increase and decrease your fears for your baby. I am going to post links and any info I think may be useful for you on the NICU Journey or NICU Roller-coaster as it is commonly referred. Hopefully you will become aware of what to look out for and or have information to present to your son or daughters caregivers to discuss and have them explain in detail as it relates to your baby. I hope and pray you don’t have to deal with any or all of these but some things are inevitable with a preemie. One thing is for sure…..Breast is BEST. If you haven’t considered breast feeding you will change your mind with a Preemie. I hope this helps in some way.
*Necrotizing Entercolitis….very scary but pumping or breast feeding whenever possible is the best thing you can do to help your baby. is another term for hospital aquired)

***Hospital aquired infection…..there are different types of virus or bacterial infections to be aware of.
Urinary tract infection, bloodstream infection, meningitis , skin infection, and pneumonia to name a few. Be sure to have nurses or ANY hospital staff or family members thoroughly wash their hands or use gloves whenever they touch your baby even if only for a brief time, as the baby is immune compromised or has a weakened immune system. Your baby will get a lot of blood work done daily or even a few times per day, depending on the situation, to monitor for infection or other levels. Always ask questions if you hear some terms you don’t understand. Even ask three times if need be. It’s best for you to ask and keep notes because there is so much info being thrown your way. Also if you don’t ask ,they won’t offer up a lot unless they feel its necessary ,or you get a good nurse or Dr who wants to help you be involved and understand what your baby is experiencing. Your baby CAN get infection through blood transfusions. I don’t want to alarm you but it happened to my son. I am sure the odds are very low but it does happen. Ask questions and be an advocate as much as possible. Most Drs are happy you ask questions but others can be your worst nightmare and this can add to your stress. My son ultimately died from sepsis due to a gram negative hospital acquired infection after being in the hospital 6 months. Most infections are treatable with antibiotics.
*Chronic Lung Disease….male Caucasian babies are more likely to develop this condition
*PDA….heart condition that is common in preemies, can be fixed with medicine and in some cases surgery
*Hydrocephalus…..this is due to a brain bleed which can occur in preemies. My son had a bilateral brain bleed but thankfully it had resolved overtime.
****** Preemies are at great risk for developmental delays and Cerebral Palsy as well as Autism and other diagnosis. Not all babies will succumb to these diagnosis but the likelihood of some lasting effects is high. I have read tons of parent stories where babies who had severe issues in the hospital have caught up to their peers and there are also a large number of parents telling stories of Cerebral Palsy or or special needs ranging from mild to severe( mental retardation, blindness, deafness, seizures, autism, learning disorders etc) this is not to scare you but to make you aware. When a baby develops a brain bleed this risk is high, although a nurse told my husband and I that her twins had grade four bleeds, or perhaps five I can’t be sure, and they are in special ed but otherwise normal. They had many other serious conditions in the hospital, they are now 11 yrs old and playing sports and video games just like their peers but need help in academics.

There are many other terms you will here and I will post a follow up blog, however one great book to check out is : The Preemie Primer by Jennifer Gunter MD.



2 responses to “Diagnosis in the NICU, be informed and aware of the potential illnesses your Preemie faces

  1. Juliet Turner says:

    Hello! I too had a baby that died from Sepsis just four months ago. Did you decided to take legal actions after your son’s death?

    • saifsmom2012 says:

      We tried but after talking to 12 lawyers, none would take our case. The reason being they said, was due to some fishy paperwork by the hospital…his medical records were doctored up and the death certificate was changed….they said trying to prove the case would bankrupt their firms. This is because we couldn’t prove there was a time he did well. Had he gone home at anytime and then been readmitted to the hospital it would have made for a great case. There is no doubt in my mind the hospital knew what they were doing and how to do it, since they have a good legal team. If I were you I would file a complaint with the hospital and the state your in, then seek legal counsel. It couldn’t hurt to see if you have a case. I’m so sorry you are going through this loss. I wish you well. If you have anymore questions I would be happy to answer them .

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