Regret

This is one of those words that I don’t like to use often in my life.  I do feel like everything happens for a reason, but sometimes we do make the wrong choices in life.  With Lamar, we knew nothing positive that would help us to make a better decision. I felt that we were so young, naive, and believed anything the doctors and physicians told us.  This is one of the biggest regrets in my life.

Fast forward to a  couple of years later, facing the decisions yet again with Rochelle in that cold hospital room.  Losing yet another child, made me into a person that I did not know how to describe.  I was lost, mad, and angry and I held it all in for as long as I could.  Until I got that one phone that would change me forever.

My Dad called me.  My relationship with him has been so rocky my entire life, and it was the last person I ever wanted to hear from.   He called to tell me how much he loved me, and sent his deepest condolences.  The last time I had heard from him on the phone was when we lost Lamar.  It angered me so much, that I let him have it.  I mean, ALL of my built up anger over the years that I have never had the courage to say to him or anyone for that matter.  I have always been the type to write all of my feelings down, especially when it had to do with something I never wanted to talk about with anyone.

After that phone call I felt relief, I felt that I was able to breathe and finally let him go out of my life.  A month after that phone call, Shane and I knew we needed to make a trip to go see Pastor Joel Osteen preach in Houston.  The sermon was about forgiveness.  It was about accepting people for who they are, regardless of the mistakes they have made. It made me immediately feel regret towards my dad.  He didn’t deserve to the be person I let all of my anger out on, and I needed to apologize for my actions and truly forgive him for all of bad memories I had from the past.  I needed to do this for me, my family, and for God.

I wrote a message to my Dad, asking to see him in person (knowing that he always cancels everything), and I didn’t hold it against him when he said he would love to, but last minute he had a change in plans to leave out of town.  I sent him messages and pictures and let him know that I do still love him, I was just in such a dark place and I shouldn’t have said those words to anyone.

I still to this day have not had the chance to apologize in person almost 8 months later, but I am very determined, and will definitely make it happen this year.

Regret is something that most people do not want to admit to, but it is so good to state the truth, and really overcome the past, and move forward as a better, stronger, happier person.

6 months and Reality Sinking In

6 months and Reality Sinking In

I didn’t realize that I had to work on this day that we would have celebrated Rochelle turning 8 months old, until I also had a huge realization that I had to also work on the next day, the day that we are mourning her and realizing it has been 6 months since her passing.  I am not sure if I subconsciously just agreed to work all Mondays and Tuesdays this month in Austin not knowing that actual dates that I committed to, or that I just realized on July 1st that I am working so many days that I would rather be off and spend them with Shane and Brielle.  Crazy thing is, I am scheduled to work on July 14th as well, which is when Lamar would have turned 3!

Today, I was unable to sleep throughout the night and I woke up thinking and asking God “why am I still awake and I cannot sleep, knowing that in 2 hours at 5:30am I am going to have to get up and drive 40 mins to work a 12+ hour work day and drive over 1 1/2 hours home with Brielle tonight?”  It wasn’t until I heard Brielle at 5:00am calling me and saying “mommy, come in” which usually means she woke up and she wants to try to go back to sleep in bed with me.  I did not know why at the time but I know in her heart that she did indeed feel her sisters presence at this time, and God was trying to speak through both of us and just know that we needed to hug and cuddle and love on each other before I left for work.

Work was spent calling my patients doctors, scheduling appointments, going back and forth with my company about my patient needing to be fully staffed for the month, taking care of her all day, and running errands with the family. It was full and I thought it would keep me from feeling sad, or just letting reality sink in that I would trade anything just to be with Rochelle and Brielle at home and taking care of my girls, but my mind definitely wandered off to that place a few times when my mind was clear.

I know God placed Rochelle in our lives for a reason.  Shane and I may not fully understand, but we know that she brought us closer a family, she opened Shane’s eyes to sort of understand my life as a nurse and how much I handle on a daily basis when I work,  she brought us closer to my parents and gave us such a safe place at any moment Shane and I just needed a “mental break”, she showed us how much love we have to give and showed us to love both of our girls equally (and even though she was special needs and required much more of our attention) we made an effort on the daily to really have one on one quality time with Brielle, and she really showed us how many opportunities are out there and how many giving and kind-hearted people are willing to serve and love others.

People still continue to ask us if we are going to have more children, or if Shane is going to have the full genetic work-up. The thing is, we have no idea where God is going to lead us in our lives and who knows if we are going to pursue adoption, or try to have another of our own, only God knows that answer so for now we are devouring in the life we are given, and truly realizing how important it is to spend the time and energy with those that you love.

We love you SO much Rochelle, and will never forget all of those precious moments with you!

I always like to leave some of my favorite pictures of her with you all. 🙂

Sleeping peacefully.. at least for a little bit when she was not being held.
Sleeping peacefully.. at least for a little bit when she was not being held.
Just minutes after meeting her for the first time, I will never forget the way her fingers curled and grasped mine so tight
Just minutes after meeting her for the first time, I will never forget the way her fingers curled and grasped mine so tight

 

 

 

Always and forever our sweet girl!
Always and forever our sweet girl!
the last night I was ever able to hold her hand and she was awake all night listening to me talking
the last night I was ever able to hold her hand and she was awake all night listening to me talking
perfection--even when she had jaundice! :)
perfection–even when she had jaundice! 🙂

The Lord giveth and the Lord taketh away.

The Lord giveth and the Lord taketh away.

lord (1).jpg

This past week has been very trying on Shane and I and I can tell it is affecting Brielle as well, just in a different way.   I wanted to document everything I can remember now on this post so I can look back one day and tell the story of Rochelle’s life to Brielle.
I kept asking God to give me a sign to let Shane and I know when He was going to take our precious daughter to be with Him.  I prayed all night the night on January 6 to the early mornings on January 7th while holding Rochelle’s hand and her precious little face just staring at me knowing that this night may be the last night I will ever get to hold her.  I decided despite all the rules in the hospitals that I needed to hold our baby girl and that she needed to know that whatever we were about to face that we were going to face this all together.  After I asked Shane to go pick up my mom knowing something was going to happen they returned at 1:00am and saw me  sobbing just holding her in my arms.  I got the exact sign I needed around 4:00am when she started gasping for air and just looking into my eyes.  I knew that was it, and that Shane and I had to let the nurse know that she needed pain medication to help take away all the pain and discomfort she was having and just to be comfortable in our arms.  It was such a rough night with my mom staying up all night and all of us three taking turns holding her, praying over her, telling her everything about life and heaven and messages that she can tell her brother one day from us.  She had been on IV fluids that night, but the nurse knew my request to let her have my breast milk was so important to all of us to have actual food and to continue on oxygen and to feel as comfortable as possible.  The night nurse was amazing and we will be forever grateful for her.
After the morning shift change with nurses, in walks in the nurse we had the last stay that was AMAZING with Rochelle and would do any request we asked of him without a heartbeat.  He gave her pain medication when it was time for it and he did every single thing to make sure all of us and the doctors were on the same page.  The doctors came in that morning to tell us that there was nothing medically wrong with her and that her organs were just giving up.  They spoke about letting us go to a separate area to have one on one time with Rochelle and not be hooked up to all of the monitors.  Little did they know, we were exactly where we needed to be in the Shrek room on the PICU floor.  The moments before she passed she had made two really deep coughs while Shane was holding her, and while I was trying to talk to the Palliative care team about our requests, all I could do was look at Rochelle and touch my hand on her back, and I knew it was time.  I asked Shane to let me hold her because I had this feeling that was what she was waiting for.  I whispered to Shane to let him know what was happening when he handed her to me. I leaned her back, she opened her eyes to see me and then closed them, and passed in my arms.  Shane, my mom, Adriane, Shane’s brother and our sister in law were all right next to me (including the palliative care team, her amazing nurse, and the main doctor) and I am forever thankful they were there for her, and I know she knew she was loved by so many.  She fought until the very end.
The moments following allowed us hold her so precious body, give her one last bath, dress her in her favorite outfit, put a bow in her hair and get her ready to be blessed by the Chaplain.  We are forever thankful for the hospital allowing us to make footprints and hand prints and for giving us a necklace and a key chain that can be engraved.  My sister in law asked me if she could take photos following her passing away and that is exactly what we needed to be able to remember every detail at the hospital. Since the policy is no siblings under 12 are allowed to visit, I asked if Brielle was allowed to come and say goodbye to her sister and they made it possible.  She loved on her so much and just talked to her and even though we may not know what she was telling her, I know it was something special between the two of them.  Thank you so much Amanda for taking pictures for us, we are so honored to have these precious moments to hold on to.  Shane and I decided to have her cremated at the same funeral home that we had her brother at, and they allowed us to see her body one last time and we will never forget it.
Even though these weeks or maybe even months, may not be easy for us, we will always love and remember Rochelle and how strong of a baby she was.  She endured more in her short life then most of us do in a lifetime.  Thank you for all of the prayers that were sent over our baby and please continue to pray for healing over us.  God is amazing and we know He is taking good care of our kids up there, we can’t wait to meet them again one day.

.
Rest In Peace Rochelle Elaine Johnson November 6,2014- January 7, 2015
©2015 Sheridan Johnson @Journey with the Johnsons. All Rights Reserved.

Surviving the NICU

nicu-warriors

There are no words to express how happy we all are to be home, safe and sound.  Not only do the past three weeks seem like such a blur but it took a lot out of everyone (especially Rochelle) to get home. I am going to give everyone a few tips that helped me get through each and every day visiting Rochelle in the Neonatal Intensive Care Unit.
* Know the hours the nurses work, so you can plan your day based on that.  The nurses worked 12 hour shifts and would do report to the next shift about 30 mins before their shift would end and sometimes it would take a good hour to give report depending on the how many patients that nurse had that shift and so I would always stay late and get there early so that Rochelle would never be left alone during shift report (the babies would cry and cry I just wish I could hold all of them during that hour in the morning and a night).
* Know the times the doctors do rounds.  Mine always came bright and early in the morning and we were always there waiting to know what the lab results, x ray results (when they were taken), and what the daily plan of care would be and any changes I would like made (to run certain labs, change the rate of the feeding, start a new medication if needed, etc) and the doctors make bedside rounds so that you could always talk to them one on one.
* If you do not understand the any procedure being done on your child, look it up and make sure you compare the benefits vs risks to doing the procedure.  I know doctors and nurses may think they know what’s best for your baby but ultimately the parents always know what’s best.  (Also any labs that are abnormal or out of range always make sure you understand what that means if it’s high or low and what that could do to your baby–also know what the treatment is going to be to get the lab back to normal range)
* Learn anything and everything you can for taking care of your baby for the hopes that when you get to leave you are fully prepared and ready for anything that may come your way. Make sure you also have a plan set up if something were to go wrong and quick, what steps you would take in getting your child the best help, the fastest.
* Do not trust that when you leave, the nurse will take the best care of your baby, (As many of you know, I am an RN so I don’t trust many nurses easily) and if you feel like your baby is not going to get the care that you would like you should stay with your child as long as you physically can before leaving for a couple of hours for shut-eye before returning.
* Learn what time things are done (when the vitals are taken, when labs are drawn and how long it takes to get those results back, when assessments are done and what the changes are for your baby, etc) it was very important for me to stay on top of as many things as possible.  (my Type A personality definitely took over during this whole ordeal)
* LOVE on your baby.  NICU babies don’t get held and loved on enough by the staff, the parents are most important people that babies to be able to fight harder every day and do skin to skin as much as possible.  Each baby that grows inside of you hears your voice for 9 and 1/2 months and let me tell you, that’s the voice they want to hear at the end of the day.  It was so hard for a couple of days when Rochelle was under the Bilirubin light (for her jaundice) and not being able to hold her, because we do 3/4 of the day unless the nurses needed to do something but other than that we loved on her continuously.
* Document everything in a notebook.  These are the memories you will never get back and being sleep deprived and low on energy majority of the days, it was so nice to write down all of the important things that happened with Rochelle and document any major changes that occurred.
* Most of all enjoy.every.moment.  Your baby is there because he/she needs to be.  It’s usually not for an extended amount of time unless your baby is born very early or they need a lot of surgeries.  Get used to change as well, because nothing will ever be the same the next day. God protects his children, ALL of them and just know that prayers work wonders and He listens.

Getting to go home!!  20 days old

 

First day in the NICU.