Welcome to Mums Advice

Tag: NICU

  • Baby Badly Burnt By Nurse

    Although I have contemplated on posting this I believe it is time that our story is shared…

    Roughly 24 hours after birth our healthy baby boy was taken to the nursery, by the nurse, to have his PKU test done. A heel warmer is used during a PKU test to increase capillary circulation to an infants heel which is where the labs are drawn from for the test. For whatever reason the nurse decided to put hot water in a diaper and wrap it around Dash’s foot and leg with the heel warmer. The water was so hot that it resulted in our newborn baby having 2nd and 3rd degree burns.

    Baby Badly Burnt By Nurse
    Baby Badly Burnt By Nurse

    After consults with NICU, plastics, wound care, and a burn center our perfectly healthy baby was admitted to the NICU for 6 days. He had an IV, was on morphine, Tylenol, and ibuprofen, and had to have an NG tube. After finally being discharged from the NICU we’ve had multiple follow up appointments with a plastic surgeon and at 13 days old our baby had to have a surgical debridement.

    This whole situation should’ve never happened. It all took place because of an ignorant decision made by one nurse. This first time mother and father experience was taken from me and Andrew because of one nurse’s bad decision. The opportunity to breast feed my baby was taken from me because of one nurse’s bad decision. I watched my baby desat and turn blue during a feeding because he was so incoherent from the morphine he needed for pain because of one nurse’s bad decision.

    If you work in healthcare I encourage you to remember that you are taking care of someone’s loved one. Although to you it may be just another day at work and another patient, to someone else that is their world, and they are trusting you to provide the utmost care.

    We are very thankful that Dash is almost completely healed and, as of now, shouldn’t have any long term effects besides scarring and possibly losing his pinky toenail. Please keep us in your prayers as we continue on this journey.

    Credit https://www.facebook.com/kaley.johnson.779

     

  • You Have To Abort One Baby

    Yup. I’m going here.

    10 weeks. That’s how far along I was when I found out I was having twins.

    11 weeks is when I was guaranteed I wouldn’t be having twins. “Baby B is not going to make it and your putting Baby A in serious jeopardy the longer you wait to terminate.” They must have thought I was crazy. I didn’t cry. I didn’t even hardly react other than to very adamantly stick with my gut. Appointment after appointment…doctor after doctor….boy did they put the pressure on. Almost as if they would receive some sort of commission. None of that mattered. I was pregnant with 2 LIVING babies. I sure as hell wasnt going to just cut the chord bc it sounded like a good idea.

    Now don’t get me wrong. It was pure torture. I was basically waiting for my baby to die. No one knew. People just knew that I was pregnant with twins but talking about it was hell. When someone would bring up what my future was going to look like, it was all I could do to not crumble bc what they didn’t know was that one and maybe even both of my babies were going to die. After all, the drs assured me this. More than once.

    But then. Day by day…week by week we made it to THIRTY FOUR weeks. And the scariest day of my life arrived.

    I delivered two of the most beautiful, perfect babies I’ve ever laid my eyes on. Baby A tipping the scales at 4lbs 15oz and Baby B – the baby who “will never ever make it”…the baby in utero with 0% chance of survival – defeated all odds and proved a strength I wouldn’t believe if I didn’t see with my own eyes, blessed this world at 2lbs 9oz and not only never needed a ventilator, but ONLY needed oxygen and a feeding tube.

    Baby A spent 16 days in the NICU and Baby B spent 29.

    And here we are. Almost 2.5 years later.

    To think of how different my life could have been had I listened to any single one of those doctors.

    To think the day I delivered them I could have STILL made a different choice?! I can’t understand. And I don’t want to.

    #forevermybestdecision #twinsforthewin #whathappenedtohumanity

    Credit https://www.facebook.com/kaidensmommy1107

     

  • Why Did My Body Fail Me

    #SeptemberisNICUawarenessmonth

    To the new mom sitting in the NICU holding back her tears:

    You did everything you could to have a healthy pregnancy but yet here you are…sitting across an isolette watching your baby breathe while all the monitors are going on and off behind you. You’re wondering what you did wrong and why your body failed you. You’re blaming yourself while trying to memorize and learn all the new medical terms that keep getting thrown at you.

    Now you’re struggling to keep a good breastmilk supply because you’re body wasn’t ready to give birth yet-because you can’t breastfeed your baby yet-because you can’t do skin to skin as often-because the stress is affecting you so you gotta pump A LOT and chug down water around the clock. And trust me, you’re not gonna want to give up because this is the only thing you can provide for your baby that will help her thrive. Also, even though you don’t have your baby with you at night, you’re still not gonna be able to sleep. You will wake up wondering how she’s doing and you will call the NICU. Or if you’re anything like me, you will drive yourself to the hospital in the middle of the night.

    You’re going to watch your baby fight for survival and you’re going to wish you could take all the pain away from her. You will also watch her reach milestones and they will fill you with pride and FAITH. You’re going to cry. You’re going to laugh. You’re going to get frustrated. You will also feel your heart sink every time you get a call from the NICU and you’re gonna deal with people telling you things like “you’re lucky you didn’t go through the third trimester,” and it’s gonna infuriate you. But don’t get mad at them, they don’t know the struggle of your heart. But I do, I know what it’s like to push through the physical and emotional pain. I know what it’s like to watch a little piece of your heart sleep inside a clear plastic box. But I can tell you one thing; you’re doing amazing. You’re a fighter just like your baby and you will persevere. I promise you that one day you will look back and realize how LUCKY you are for being the chosen one. God chose you to witness a miracle and He only did it because He knows how strong you are. Hang in there mamma, when you look into your baby’s eyes while heading home for the first time you’ll realize it was all worth it

    Credit https://www.facebook.com/dianawlk1991

     

  • What They Don’t Tell You About The NICU

    It’s been 4 months since my little baby came into this world. 4 months since I was being rushed back for an emergency c-section. 4 months since the doctors cheered after hearing your little cry. 4 months since you were taken out of the operating room and into the NICU before I could see you.

    Just two days before that we were given a tour of the NICU. I remember feeling pretty calm and comfortable with the fact that that’s where my baby would be. The nurse showed us the different pods, told us what to expect, and explained what he would need to do in order to go home: breathe on his own, eat on his own, and gain weight.

    Looking back now I realize that there were so many things that they didn’t tell us. That I wasn’t prepared for.

    They don’t tell you that in just a couple of days that place will terrify you. It will become a second home you wish you never had.

    They don’t tell you how absolutely depressing it is to be discharged. Packing your bags and being wheeled out of the hospital without your baby is enough to make you want to vomit.

    They don’t tell you that you will feel this way EVERY TIME you leave that hospital without your baby.

    They don’t tell you that just days after a c-section, the walk from the parking deck to the NICU will be the longest, most painful walk of your life.

    They don’t tell you that holding your baby for the first time will be the best and worst moment of your life. You finally get to hold him – yay! But it’s not supposed to be this uncomfortable and terrifying.

    They don’t tell you that your interstate anxiety will instantly become a thing of the past because nothing – rain, flooding, thunderstorms, and not even the Afton mountain fog – will keep you from seeing your baby.

    They don’t tell you that you will blame the nurses and doctors. Your baby was having such a great day yesterday and now he’s back on oxygen and hooked up to IV’s. The medical staff must not be keeping a close enough eye on him.

    They don’t tell you that you will dream about the NICU. You will hear beeping machines in your sleep.

    They don’t tell you that you won’t feel like a mom. Someone else is taking care of your newborn. They are feeding him, changing him, and keeping him alive. What are you here for?

    They don’t tell you that you will cuss the people in the parking deck and the ones walking slow in front of you because it’s 1:55 and if you’re not in the NICU at 2:00 they will feed your baby without you and that’s what you look forward to everyday.

    They don’t tell you that you will pull into a rest stop on your way home to call and bitch at the nurse for not giving your constipated baby a glycerin yet. Obviously that’s way more important than what her other babies may be dealing with.

    They don’t tell you that you will hate your significant other. He obviously doesn’t love your baby as much as you do. How dare he want to take a day off from visiting him to relax and get some things done around the house. He must not care.

    They don’t tell you that your friends will piss you off and not even know it. How dare they have fun together and live a normal life when you feel like yours is falling apart.

    They don’t tell you that you will keep these feelings bottled up. You know you’re being irrational.

    They don’t tell you that you will become miserable to be around. You don’t want to have fun. You don’t want to tell your family members that your baby is having a “bad” day.

    They don’t tell you that someone telling you that their coworkers sisters best friends baby was in the NICU and she’s 5 years old now and healthy as can be will NOT make you feel better. That’s not YOUR baby. YOUR baby may be different.

    They don’t tell you that someone telling you to “take a day off” will piss you off. How are you supposed to take a day off when that’s your baby over there, in the hospital, an hour away?

    They don’t tell you that you will make the trip to see him two times in one day because you got home and realized that you missed him and needed more cuddles.

    They don’t tell you that even though he isn’t home yet, you still don’t get much sleep.

    They don’t tell you that you will eventually become numb to the feeling of nurses rushing in when his oxygen and heart rate drops once again, causing a machine to alarm.

    They don’t tell you that you will become an expert on NEC, chronic lung disease, and various other diseases that can affect preemies.

    They don’t tell you that you will struggle. The money it takes to travel there adds up. You’ll take weeks off work because your baby needs you. You’re significant other will take FMLA when your baby isn’t doing good. You will understand what it means to be broke.

    They don’t tell you that people will talk. He was probably born early because I worked out during my pregnancy, right? Or I must have been doing SOMETHING wrong to make him come early.

    They don’t tell you that you will blame yourself. Even though you know there was no way to stop the preeclampsia, it was still your body that was the problem. And cutting back on sodium and drinking more water doesn’t touch a blood pressure that is 178/119.

    They don’t tell you that you will go from ignoring every unknown caller to rushing to your phone at the sound of the first ring. Who knows, that number from Houston, Texas may be a doctor that just recently moved to VA.

    They don’t tell you that your heart will race when your phone does ring. Is it UVA? Is it bad news? Is Grayson ok?

    They don’t tell you that you will always have a terrible, awful, feeling that your baby will never come home with you.

    They don’t tell you that you will learn to smile to hide your jealousy. You will try to hold back tears as yet another happy family walks out of the NICU with their baby, taking him home.

    They don’t tell you that the first couple nights home with him will be absolutely terrifying. Is he breathing ok? It’s hard to tell without monitors on him.

    They don’t tell you that you won’t remember much from that time frame. If it didn’t have to do with the NICU and your baby, it didn’t happen.

    They don’t tell you that you won’t know fear until you see your baby being rushed BACK to UVA in an ambulance because his oxygen is low. All those tears you’ve held back for weeks will finally pour out.

    They don’t tell you that your heart will stop and your soul will leave your body when you hear the doctors mention pneumonia. You know what that means for a baby that delicate and small.

    They don’t tell you that your blood will boil when his 6-year-old brother tells his grandma that he’s big and healthy because he “got out of the hospital on time, unlike Grayson”. You let it slide and don’t say a word because he’s only 6 years old, you know he didn’t think of that on his own. 6 year olds don’t say things like that. Adults do.

    They don’t tell you that you that people you don’t even know will send you their prayers. Friends and family members that you haven’t seen or spoken to in years will give you their support and love.

    They don’t tell you that this whole experience will make you thankful. There will be a new meaning to life. Your baby fought for his life and won. He may be fragile but he’s STRONG.

    Babies are born smaller and earlier than Grayson everyday. He was born with no life threatening health issues. He spent 53 days in the NICU. He’s one of the lucky ones.

    Grayson James was born at 32 weeks gestational age at 2 lbs 13 oz. He’s now 4 months old and 9 lbs 3 oz. That’s something to be thankful for.

    Credit: Morgan Leigh Propst

  • When Your Baby Makes An Early Arrival

    This is one of the only photos that I have where I look pregnant.

    This was ten days before our sweet boy decided to join us, fourteen weeks before he was supposed to.

    If I could go back in time, I would tell myself to push harder the first time the doctors ignored my concerns. I would tell myself that everything would be okay, and that I would make it through.

    But nothing, not even the advice that I would give the old me, can prepare you for the NICU. Everyone’s journey here is SO different, there’s absolutely no way that anyone can tell you what to expect.

    When I see the new moms get wheeled up here for the first time, my heart breaks for them. I want to just hug them, and tell them that I know exactly how they feel. Their birth plan had gone out the window, their “perfect labour” didn’t exist. Their brains are still foggy from the medication, and their baby… the only thing on their mind… that sweet baby… is in the best hands.

    I remember the surgeons telling me that I would be out of the OR ten minutes after Jameson left. I laid on the table, arms stretched out, for what felt like years. Come to find out, it ended up being a little over an hour. I sat in recovery until I could move my toes, and I concentrated SO hard, I knew that I had to have had enough muscle memory to move a stinkin’ toe! They let me go early, because I wouldn’t leave them alone about it. They let me see our miracle baby for 25 minutes before I was wheeled back to my room, to wait until I could stand. The nurse walked in a few hours later and asked “do you think you’re ready?” I immediately stood up, and blood went EVERYWHERE. “Woah, you weren’t supposed to stand up yet!” But off to see my boy, I went.

    I understand, Mama. All that is important is that sweet baby. The pain killers, uterus massages, pumping, it can wait.

    When Jameson was just a few weeks old, the doctors had “the talk” with us. If you’re a micro-preemie parent, I’m sure you know exactly what I’m talking about. That heart-sinking moment when medical professionals come to tell you that your child may not make it. The choices that you are forced to make are unimaginable, and they will eat you alive, regardless of what that choice was.

    We have signed consent forms, giving strangers permission to operate on our son. We’ve seen him cry (we haven’t heard him, yet), we’ve watched him get poked, you name it.

    I’ve watched syringes of strangers blood get pumped into our son to keep him alive.

    I’ve seen 10+ nurses running as fast as they can to our baby’s bedside to give his little two-pound body compressions, and stimulate him to keep him responsive while they put a tube back down his throat.

    I slept on pull-out chair for weeks, and ran off of bags of chips and coffee.

    I’ve cried, boy have I cried, and I’ve let my ugly out on a lot of people who didn’t deserve it.

    But, I’ve also had months to celebrate the small things.

    I won’t ever be upset when Jameson pees on me, because that means his urinary system is finally deciding to function properly.

    I’m not mad when I smell like puke, because he’s finally off of TPN fluids.

    I got to kiss my boy at three days old.

    I got to dress him once he was a few months.

    We got to give him his first “big boy bath” at six, and Gigi and Grandpa Greg finally got to hold him at five.

    These are things that are taken for granted, that I will never ever let go unnoticed.

    The point of this post is to tell you this: Although our journey has been long, and it has been filled with a lot of ups and downs, we are not the only ones. Please, please be considerate when you’re talking to moms with special babies. They are miracles, regardless of their needs. I know that sometimes it’s not “normal”, and if you have questions, ask! Please be patient with us and our crazy rules, and our last-minute cancellations. But, please don’t be ugly to us Mama’s who have fought so hard for our babies. They are loved more than you can imagine.🖤

    Full credit goes to Keeghan Haight

  • Not Every Doctor Is Right They Don’t Know Everything

    This is my daughter Amelia, she was born at North Staffordshire hospital at 3.30pm on 23/9/2017 Saturday evening I was induced due to excessive fluid and spd.i had a horrible pregnancy when I gave birth to Amelia she was purple and could not swallow she was foaming from the mouth the midwives convinced me she had a strider to which I knew it was more as I’d previously had 2 children before.

    The midwife then left me and Amelia’s father alone for 1h45 minutes I rang the emergency buzzer as she was getting dramatically worse in her health, an intensive care pediatric consultant came for Amelia and rushed her to nicu where they went on to putting tubes down her nose, at this point the only way Amelia could get rid of her secretions was to be lay flat on her belly otherwise she would choke.

    At 10.45pm Amelia had further test done with the tube they tried to suck air out of her belly to which had no success they had no idea why this was happening so they ordered a scan, after the scan we were told Amelia was unable to swallow and that she could have a few different defects and that her life was 50/50, they couldn’t tell us for sure what it was she had and they didn’t know what to do or how to treat it as they had never seen this condition before, I never left amelias side in the nicu all that night they left amelia on her belly all that time with no proper Amelia’s care or diagnosis.

    At 1am a doctor came to me to tell me Amelia would either be moved to alder hey or Birmingham to get a diagnosis and fix the problem yes they called her a problem 😡 at this stage me and her father had no idea what to do we were both distraught 😩, a private ambulance came from Birmingham at 3am to collect Amelia and straight away knew what she had they were absolutely disgusted with how they had cared for her, they attached suction tubes in her mouth and oxygen down her nose, when arriving at Birmingham we were met by three surgical consultants who I must admit were lovely they explained everything in such detail they also noted that Amelia’s condition should have been picked up on my anti natal scan and I shouldn’t have had Amelia by natural birth and this could have killed her I should have had a planned birth with them.

    At 10am Sunday morning aged 10 hours Amelia went down to have a major operation at this stage we know she has tracheo-oesophageal fistula/ distal esophageal atresia, when Amelia came out of her operation 8 hours later it was a huge success she spent 3 days in intensive care.

    While in intensive care Amelia would not wake up this was due to the amount of pain killers and sedation she was on, one doctor of the intensive care ward ordered Amelia to come off all drugs and sedation and to replace these with paracetamol, the surgeon also ordered Amelia to be weaned of the ventilation within 24 hours otherwise she would become dependent.

    When they put Amelia on c-cap she sat very low on all oxygen levels and heart rate they said this was due to the 3 days Amelia was on the ventilation that it causes respiratory distress and can also cause bacterial pneumonia so she was on very strong antibiotics the whole time we spent in the hospital.

    Moral of the story not every doctor is right not every doctor can say what they have, we don’t have enough medically trained specialists, every child deserves a chance and If it wasn’t for Birmingham Amelia certainly would not be here now.

    Credit Abbie Richardson

  • This Picture Makes Me Sad And Reminds Me How Awful I Was

    This picture actually makes me sad, while others treasure their scan photos all this does is remind me of how awful I was.

    I didn’t announce my pregnancy until I was over 20 weeks and even then I wasn’t going to because to be honest I was embarrassed and ashamed. Ashamed of the situation I had put myself, I was 17 years old, pregnant with a guy I wasn’t with and who offered to pay for my abortion, working a part-time job and out partying 24/7.

    After I reached the point of no return where abortion was concerned I started to question myself “have I done the right thing?” I’ll be bringing up a child on my own, in a bedroom in my mum and dad’s house, I’ll have no life and no other guy will want to be with me when I have someone else’s child.

    It was all about me! I struggled to “bond” with the bump, never spoke to anyone about how I felt and constantly thought I had made the wrong decision. Eventually I gave birth (awfully of course) which made the situation even worse, I didn’t have any skin to skin contact to bond with her, she was just taken away, I’ve never felt so emotionally, mentally or physically drained in my entire life, looking back on it now I remember the bare minimum.

    I know they took my little girl away to the NICU and came to let me know she had to go another hospital 100 miles away, I was so exhausted I didn’t even want to go and see her, I just wanted to sleep but I did, I sat there in a wheelchair like a zombie totally zoned out while a midwife “milked me” like a cow. Then asked to go to bed.

    The next day I went to the  children’s hospital as baby had been taken there overnight, I remember seeing her all tubed up and my stomach sank, I didn’t know what to do. I still didn’t feel a bond between us, I couldn’t even hold her, she didn’t have a name for 4 days.

    I should have received a lot of help from a psychologist or someone to sort my head out after this but the hospital didn’t offer anything so I just got on with it, looking back I strongly think I suffered with Post natal depression but never spoke to anyone about how I was feeling (as I do).

    I went to the hospital first thing in the morning to last thing at night but still didn’t feel like I should have towards her. Getting her home I remember thinking I wished I could go out and do what I want, have my life back, I was still a good mum but I wasn’t happy. I can’t remember what or when it was that changed in my mind but my baby became my everything as she should’ve been from day 1.

    I feel sick now even thinking that I thought that way. I still think about my life before and how easy it was and I didn’t have to get a babysitter to go to a friend’s birthday but that’s not worth anything compared to having a mini you, my little girl is one of the most beautiful children I’ve met even though I’m biased, she makes me laugh every single day without fail!

    I regret not celebrating my pregnancy and enjoying it for her, I regret not asking for help and I regret doubting my decisions but I don’t think I’d be where I am today if it wasn’t for that.

    I think meeting my new partner was a big turning point, knowing there was someone who would love me with a child. Not only love me but love my child more than anything as if she was his own, now she is his, he’s her dad and we now have another beautiful daughter to fill our lives with happiness. I haven’t suffered any PND this time round thank god, I can’t leave this baby alone 😂 I wish so much it had been the same with my first and I had seeked help. If you have bothered to read this massive spiel and you or someone you know might be suffering from PND then please get help, it is fixable. ❤️

    Related article: http://mums-advice-old-copy.local/to-the-mum-pnd-you-are-not-alone/

     

  • Beautiful Poem For Premature Babies And Their Families

    Beautiful Poem For Premature Babies And Their Families

    Time stands still, the day has arrived

    A baby born early, has he survived?

    Emotions are torn, what should I do?

    Lost in a world that’s so new to you.

    The baby is rushed into NICU care

    Mum on a table, it doesn’t seem fair

    A mother and baby, two floors apart

    Separated by distance, connected by heart

    You stand on the outside as the scene flashes by

    The team go to work, don’t let him die

    Tubes and machines keep him alive

    You pray for a miracle, let him survive.

    The doctors they tell you, prepare for the worst

    Your world tears apart your dreams are immersed

    He is far too small, he has a battle ahead

    You search for some hope in the eyes of the Ped.

    The day turns to night and the team goes away

    A doctor and nurse are the only to stay

    The clock goes so slowly yet the hours still pass

    Your try to reach out to that face behind the glass

    Your life is the monitor you watch every beat

    You watch every breath; you don’t leave your seat

    You don’t leave his side he is your blood and your life

    You would give your left arm and so would your wife.

    A father’s pain is hard yet it only seems token

    Compared to a Mum who lays battered and broken

    Her dream has been robbed and so has her joy

    Her only life’s wish is to hold her new boy.

    As night starts to deepen you start to reflect

    You start to question what to expect

    You try to reason you try to make sense

    You feel joy yet your pain is intense

    The longest night in history draws to a close

    The day that stood still, the day where time froze

    The smallest human you have ever seen

    So tough, so hard, courage unseen.

    Hours become days and days become weeks

    Weeks become months, with falls and peaks

    The road is long the journey is hard

    The climb is tough your mind is scarred.

    But your family and friends are there, you’re not alone

    You soldier on regardless as NICU becomes your home

    Those brilliant doctors and staff are there on your ride

    With those Angels of MERCY there at your side

    How can one so little be so tough and brave

    And defy all the odds that once looked so grave

    A heart the size of the MCG in a body built so small

    He took on every challenge and answered every call

    Sometimes when he is sleeping, I sit there at his side

    And appreciate every second and watch him with such pride

    Our boy came home, his battle was hard, the lucky we were among

    Some Angels stay there forever, forever they are young.

    💙💙

    (Written by a preemie Dad Sean Simpson- 2007)