Parent2Parent: Shana

 

 

 

 

 

 

 

 

 

 

 

 

 

 

How many kids to do you have? I have one living, Shiloh

How many kids do you have with a NICU jo­­urney? Just Shiloh

How long was the stay within in the NICU­­? 94 Days, from May 8, 2012 to Aug 9, 2012

Where did you draw strength from while i­­n the NICU? I knew that I had to just make goals (not necessarily, Shiloh’s goals like eating, breathing, etc.) like, I will get through today without being negative or I will think of 5 things that are better than they were yesterday.

Was it a song, ­ a Scriptu­re, ­ a quote? Can you share it with us­?­ Three little Birds by Bob Marley was my mantra, and the song I would sing to Shiloh daily as I held her, “Don’t worry about a thing, cuz everything little thing will be alright”

Who ­ ­within your personal network prov­ided su­pport while you were in the NICU­? ­Parents, Partner, Friends, NICU staf­f? ­My family tried to help, but they were at a lost, so many times I had to find the strength within myself. Luckily, my Gramma called me daily and would help keep my spirits up.

In what way did you feel like you ­were s­upported by them? Lots of laughs, and encouraging words

Who ­ ­within your internet network prov­ided su­pport while you were in the NICU­? ­was there a ­Facebook, twitter, goo­gle plus community­ or communities? ­Onl­ine forum in what way did you feel li­ke­ you were supported by them? I really didn’t spend much time talking online during those 3 months, I would get on long enough to post updates but I was too consumed with Shiloh.

What are some of your favorite tools, resources or gadgets that made your NICU journey easier? Journaling was the best for me, I knew I could write anything and everything without judgement and then later go back and read it and know that I got through another day.

Can you share with us a good NICU day fo­­r your ­child (a triumph)? ­ What was­ the day were you need support a­nd stre­ngth? The best day was obviously the day they said, “You can take your daughter home”, but we had lots of good days, because to me any day that she continued to fight for her place on this planet was a good day.

The worst day was the day we almost lost her. On Thursday, June 21st, I walked into the ICN to a very noisy room, and the sound of every alarm on Shiloh’s monitors going off, but before I completely freaked, I decided to check on her to hoping that is was just a machine malfunction. As I walked to her crib I notice my baby girl was ashen blue and was not breathing at all. Of course I immediately began to freak out. I tried to stimulate her in hopes that she would take a breath, fearing that my little girl was already gone, and yelled out to the nurse that my baby was blue. The nurse came running, tried to suction out her mouth, and then said the words I was hoping I wouldn’t have to hear, “Get her team in here, we have a code blue”.

I ran to the hall and watched as a team of 7 people rushed to my baby’s bed. I then leaned against the wall, praying like I had never done in my life, just saying over and over, “God, please do not take my baby girl, I will do anything just don’t take her”. About 30 seconds later I heard the most beautiful sound in the world, my little baby, crying. The charge nurse came out, and told me I could go in and hold her, but she had aspirated on some formula, and would probably need some breathing support.

As I held my little Monkey, I felt a love that I have never felt before (don’t get me wrong, I have loved her so incredibly since the second I found out I was pregnant, but after feeling like I was going to lose her, my love only grew stronger). To feel her tiny breath against my cheek, to hear her baby cries, I felt like I was given a second chance, and I guess in a way I was.

Then the questions set in. How long had the alarms been going off? Even though it was a little noisy, why had neither one of the nurses heard her alarms? And the worse question, what would have happened if I hadn’t walked in when I did?

After x-rays, we found she had collapsed her left lung and would most likely have pneumonia. She was put on a ventilator and was given morphine for the pain. It was then in it all hit me again. My 6 week old baby girl, who had been healthy since the day she was born at just a little over two pounds, now had a collapsed lung and pneumonia, because of a careless mistake.

I sat there, crying again, feeling helpless. Wanting nothing more than to wrap her in my arms and hold her, knowing that I couldn’t because she was on so many tubes, and had multiple IVs. I just sat there staring at her swollen body, hoping she wasn’t in too much pain.

It was then that Graham and I had a chance to actually sit down and talk to her doctor. He told us that she would be getting antibiotics to help minimize her pneumonia, and that, because she probably only went without breathing for 3-4 minutes, and that she still had a heartbeat, she most likely would not have any brain damage. But because of the degree of aspiration she might have lung damage. And then the only thing I didn’t really want to hear, had I not walked in when I did, she would have probably died. That as helpless as I felt at that moment, I had actually saved my baby’s life.

If you could share one tidbit with other­­ NICU parents what would it be?! DON’T GIVE UP!

Is there anything else you would like to share? I am free to answer any questions, or talk about my experiences

 

 

 



Parent2Parent: Jennifer, Founder of Lily’s Hope Foundation

My husband, Justin, and I have two children, Lily and Aidan.  Our daughter, Lilian Hope, was born 7 weeks premature, only 2 lbs. 12 oz. and 15 inches long in July 2007.   She was born early because of preeclampsia and a placental abruption; small for 33 weeks gestational age.  She almost didn’t make it through her first day of life, but thanks to the amazing doctors and nurses at Lehigh Valley Hospital, they saved her life.  She was on a ventilator and oscillator for 7 days, had a chest tube, and spent almost 1 month in the NICU. Later she had speech and physical therapies. Lily struggled with gastrointestinal issues, failure to thrive, had surgery and saw specialists at Children’s Hospital of Philadelphia at age 5.

Additionally, our son, Aidan Patrick, was born October 2013, 3 weeks premature at 5 lbs. 2 oz. and 18 1/2 inches long. He has gastrointestinal and pulmonary issues like Lily, as well as severe allergies and asthma due to his prematurity, and sees specialists at Children’s Hospital in Philadelphia. He also went through early intervention also for physical and speech therapy like Lily.

I drew strength from my husband, my family, my faith, and from the information that was given to me by the doctors and nurses.  Lily was born in 2007, and at that time there really wasn’t much information at my disposal like there is now.  I think through all of Lily’s and Aidan’s difficult periods due to prematurity, I held onto hope.  I always believed they could get through it, even though the periods of transition and sickness were difficult.

I would like to share a few of my thoughts with new NICU parents:

  • Find the strength within yourself, your child, immediately family and friends, to get through each day in the NICU and when you go home. This is a tough time, but you can do it.
  • Be present in the moment with your new little one. Appreciate their milestones and trust in his or her progress.
  • Don’t be afraid to ask questions of the medical staff around you.
  • Educate yourself as much as possible about this new situation you are in.
  • Take advantage of all the resources available to you.
  • You are not alone. There are many families with preemies out there, and many support groups at your fingertips.
  • There is hope in all difficult situations. You can do this.

 

The Lily’s Hope Foundation supports babies, children, and their families with unexpected and urgent needs due to premature birth. 



CareNav’s NICU Survival Guide I

Connect2NICU asks: 25% of families know that their baby will be born preterm and 75% of families do not know they will have a preterm baby. If you do end up in the NICU, do you have any advice or survival tips for families with babies in the NICU?

Here is a compilation of advice from our CareNav nurses:
Bringing a child into the world is nothing short of a miracle. It’s not comforting to think about, but even if you do everything “right”, there can always be circumstances beyond your control. Whether you have been told to plan for a stay in the NICU or it’s unexpected, here are CareNav’s survival tips for orienting yourself to the NICU.

1) Try to see your baby as soon as possible.
It may mean getting there in a wheelchair or going there in a post-anesthesia fog, but the sooner you see the new life you have brought into this world, the better off you will both be.

2) Before you go, ask the nurses or doctors what you can expect to see.

The equipment and tubing that will help your baby get well are second nature and invisible to the staff that works with them every day, but it is best to be prepared to the extent possible. It may be hard to hear about what to expect or it may be hard to grasp what they are saying, but it will help you get oriented to the new environment. And don’t be afraid to ask questions!

3) Plan to practice great infection prevention starting with hand hygiene
Newborns, especially those who get a rough start to life, are susceptible to infection. Depending on the type of NICU and the babies they have, don’t be surprised if you are asked to cover your clothes with a hospital type gown. Always sanitize your hands before entering the NICU and make sure others do the same. Good, thorough handwashing is better than Purell type liquids. Keep anyone sick (or who has been exposed to illness) far away from yourselves and the baby.

4) Try to connect to your baby as much as possible.
If circumstances allow, try to touch your baby skin to skin as much as possible. Studies suggest that this is very important for the infant and for you. Speak to the baby or sing to them, to the extent that it doesn’t disrupt other families. The baby has been hearing your voice for months, and continuing to hear your voice is important for their development.
Also, if at all possible, breast-feed, even if that means pumping your milk and having the nurses give it to the baby. As far as science has come, they haven’t been able to replicate the nutrients and antibodies in mother’s milk. It’s something that you and only you can do for your newborn.

5) Get familiar with the monitoring machines, but block out the noise.

The beeps and bleeps of the NICU are part of the rhythm. You will make it harder on yourself if you try to follow every signal, but it is comforting to have a sense of what is being monitored. That having been said, be aware that although the NICU is full of other families, noises, and beeping, focusing in on your family and trying to stay calm amidst the commotion is a tall order but you are up to the task!

6) Understand the hospital schedule
All hospital staff works on shifts. So every 8 – 12 hours, you will be dealing with a fresh team of nurses and doctors. While it is different for different hospitals, find out the basic schedule and make sure you have a chance to talk with and give input to your medical team before the shifts change. It might not work all the time, but the more you understand about their plans for your family and the more they understand your needs and concerns, the better the care will be. Especially pay attention to and try to be present when the shifts change and teams do their “face to face” hand-offs.

7) Make sure you take care of yourself
A NICU stay is a marathon not a sprint. No matter how long you end up there. Make sure to take care of yourself. EAT. SLEEP. Get some fresh air. You can’t take care of your little one if you are completely drained.

8) Say yes to help
Friends, neighbors, and family will ask what they can do to help, and you may not even know where to start. Make a list, and always say yes. It’s good for you and good for them. If not for yourself, then let them help with your other children or help you do something nice to help your significant other. And if they don’t ask, learn to ask for help. There are lots of unknowns in the hospital, and you always want to preserve your strength when possible.

CareNav is a network of experienced nurses available for one-on-one virtual consultations to empower and facilitate the healthcare experience of patients, caregivers, and their families. If you have more questions, reach out to us and talk to one of our nurses.



Preemie Update From Julian Nixon , posted on Preemie World

PREEMIE UPDATE: Julian Everets Nixon, II

In the December edition of our Preemie Family newsletter we learned about 26 1/2-week preemie Julian Everets Nixon, II who was born at 1 lb. 6 oz. and spent 18 days in the NICU before passing away.  Read more in an update by his father, Julian Nixon.

by Julian Nixon, Father to Julian Everets Nixon, II & Co-Founder of “Connect2NICU” (www.Connect2NICU.com)

                     Julian in the NICU

“If you want to hit me, you can. Go ahead and let out all of your anger. You don’t deserve this—you two did nothing wrong.”

As I looked at the doctor I could feel my fist taking on a mind of its own. The nurse that had accompanied the doctor watched my anger slowly rise above my grief and she began to slowly reach for her cell phone. I could envision myself hitting the doctor. I could envision myself hitting him and the nurse, tearing the room apart, tearing the NICU apart, and finally dealing with the short jerk from yesterday.

The pregnancy had been difficult, but we had no idea just how difficult it had truly been. We were young, inexperienced, and had no idea as to what was normal in pregnancy and what was abnormal. It was the day before Thanksgiving and we were stopping in to the doctor’s office to pick up the results of a urine sample. Twenty minutes later we were being rushed to the closest hospital. Apparently, what we had been told was normal had not been normal at all: my wife was experiencing severe preeclampsia and everyone feared the worst. Fast-forward to Black Friday and I received the best gift ever: my firstborn son. You couldn’t find a better deal on Amazon!

But this gift came at a price. While my wife laid on the operating table, my son was surrounded by medical staff. Both of them were dying, both of them were slipping away from me and I couldn’t do anything about it. I have no idea how long we were in the Labor and Delivery. I lost count of the staff. I lost count of the bags of blood. I lost count of how many staff members took turns betting on when I would pass out (I never did, I used to be an Animal & Veterinarian Science Student). I lost count of how many tools they put into my wife. I lost count of how many times I heard the machines tell me that I was losing my wife. I lost count of the moments that the room fell silent. I lost count of how many times I refused to breathe until my son chose to do so.

Everyday I went to the NICU and I read to him, I sang to him, and I told him about everything that he and I would do together. I guarded him day and night because he was so fragile, and yet so strong willed. Some nurses loved him like their own, and some made every effort to make me as comfortable as possible. They told me that they didn’t see many men spend as much time with their children, doing the numerous things that I did. I would smile when they said that, but deep down inside I knew that the one thing that I wanted to do for him the most was to take him home. I spent day after day watching people arrive to take their child home—out of this strange place where we did not belong and into a home of belonging and care.

To continue reading  please  click here: By Julian Nixon, posted on Preemie World.




Sugar: A Tale of Motherhood & Medicine By Raissa Hacohen

Raissa Hacohen the Founder of Carenav shares her personal journey of love and pain as she navigates pregnancy, NICU and the medical system. Please join her as she cries and rejoices, navigating you along the path of her story, Sugar: A Tale of Motherhood & Medicine.

 

Summary:

Sugar is a personal narrative about becoming a first time mother, coping with illness, navigating the medical system, and spending over 4 months in the hospital. It serves as a broader commentary on motherhood, medical care, and struggle itself.

Coping with a loved one’s illness is certainly one of the darkest hours a family can endure. This memoir has hope and despair, highs and lows, and is surprisingly joyous for a book about a subject as weighty as this.

A Tale of Motherhood & Medicine