Pink for Rochelle

  On January 11, 2015 we celebrated Rochelle's life by having a memorial service for her. All of our close family and friends got together, along with our church and made the day so special and meaningful to us and we know Rochelle was looking down probably smiling that little smile of hers.
  The days in between her passing and her memorial are pretty much a blur.  All I know is that I had to make a lot of decisions, and fast so that everyone could get everything done that we would like to be done.  Both of my sister in laws did great and provided so much help, we couldn't thank them enough.  One helped with the pictures, and printing them out and putting them in gorgeous frames and helped along with desserts and decorations, and my other one helped pretty much with the program and the days events (everything from making the program and making sure the church service went well to helping back at the Harry O'Gibson center where we all gathered for the balloon release and the celebratory feast.)
  The church service was amazing, and was held at our church (St. James Baptist Church) our Pastor Rev. Lynn Jones did amazing with his words and his kindness during this time for our family. Our niece Rhyleigh read such a meaningful poem and one of our church members sang such a beautiful song "I give myself away". It went so smooth, and we appreciated everyone who got up to speak something positive for Rochelle.  She was truly loved by so many, and we cannot thank you all so much for all those kind words you spoke of us and our beautiful daughter.  I also loved that Shane and I got to speak words of love, kindness, and encouragement for our baby girl, we know deep in our hearts that she is having a blast in Heaven, not hooked up to any monitors and not having to struggle any more to breathe.
  Following the church service, we all gathered at the Harry O' Gibson center and started with the letters to Rochelle on the bottom of each balloon, and then releasing them with Shane, Brielle and I standing in the middle surrounded by all of our family and friends around us.  It was so uplifting to be able to write one last positive note to our baby girl before releasing that balloon and it truly gives us so much comfort knowing we were able to make that happen.
  Then it was time for the prayer over the food and gathering time and just seeing all of our close family and friends attend, made the day that more special.  God truly gave me the strength and power to make the day so beautiful and special and even though I wish I could have had a photographer there at the memorial taking pictures of things that I do not ever want to forget, I know that I will always remember what is important, and that is our perfect little baby girl.

Thank you to ALL of our family and friends in making the day unforgettable and helping so much with Brielle in the process to give us time to think, heal, and pray.  We love each and every one of you.

We love you our perfect baby girl :)

New Year, New Me

  When Shane and I were talking about our New Year's resolutions we both agreed that ours was survival.  It was surviving anything and everything that Rochelle could possibly go through and coming out strong.  After losing her, it felt like my whole outlook for this new year was gone.  It is still a weird feeling knowing that our small tiny house barely had any room for anything extra when Rochelle was alive, and now it seems like we have so much space, everywhere. I know God is helping us heal through all that is going on, and I know this year is going to be different for all of us. I think having new goals and a new outlook will be good for us. I have come up with a few new years resolutions that I think would be good.

 1) I want to take at least 30 minutes a day to myself.  Whether it means going for a walk, reading a book, or taking a nice uninterrupted shower, that is what I will try to accomplish every day.  I find that when I have time to myself and just regroup it benefits everyone.

2) To read at least 5 book this year.  I used to LOVE this hobby before kids, and I have not made the time for me to do it and I definitely want to pick up a good hobby once again.  I am currently reading Our Children Live On by Elissa Al-Chokachy and I love it so far.  Any book recommendations would be great as well! I love healing and positive books, romance novels, suspense, and all of the above.  :)

3) Incorporate exercise back into my life.  I am hoping to try a spin class tomorrow for the first time in a few years and I am more then excited to do that, even though I might pass out with how out of shape I am. HA! But I am definitely going to make a conscious decision to hopefully join the gym in my home town once again and feel good again.  It is such a good stress reliever!

4)  Go on at least one date night a month.  It is so important that Shane and I keep our foundation strong and stay strong for Brielle.  It is nice to just have alone, uninterrupted time to just be with each other.

5) Spend more quality time with friends and family.  It is so important to value the ones that you love by spending time with them, so we definitely want to try to make a conscious effort to visit our loved ones more this year.

6) Volunteer more.  With all the help from strangers that God places in our path to help care for Rochelle,  I definitely want to give back more this year than ever.

I hope to accomplish all of these when I look back in December, and hope to be a better wife, mom, and overall just a better me.

19 months!!

This past month has definitely been hard on everyone, including her.  Losing her best friend has definitely taken a toll on her.  Every baby she sees she calls them "chelle" and every picture of her sister she sees she gets this huge smile on her face like she did when she would see Rochelle every morning after she woke up.  She is an amazing girl who is strong-willed, defiant, loves to show off toddler who has so much love and joy to give! We love her so much and will give her the best life possible.

Height: 33 inches

Weight: 24 pounds

Shoe size: Some are 5, majority size 6.

Likes:
-Sweets (Candy, Coffee, Soda) UGH! all things we don't give her a lot of, but when she sees these she HAS to have some.
-Barney (Has to see at least one episode a day!)
-Food (She is at the age where she loves to snack all day instead of eat big meals with us)
-Her wubbanub paci  (Still LOVES this thing)
-Still LOVES to color--I mean it's an all day activity.
-LOVES to dance!! Her favorite songs are Let it go, Shake it off, and turn down for what! (loves all music)
-Video chat.  At least once a day she has to talk to her Nana and Grandpa.
-Reading
-Animals.  All dogs are named after our dog Toby and all cats are named Oscar.
-Puzzles
-Talking (I swear once they start, they don't stop!) lol She talks so well :)
-To show her love for her sister
-To ride on Daddy's back

Dislikes:
-Changing diapers/clothes--unless we bribe her it's going to be a battle.
-Getting out of the bath. I swear we need to set aside an hour for this. She hates getting out.
-When we don't understand what she is trying to say to us.
-To be scared.  Or to see scary things. She will say "Mommy cow scary"
-When people are hugging or touching each other.  She hates PDA lol!
-To leave mommy


Teeth: 16 teeth. No new teeth this past month, thank goodness!

Diapers: Size 5.  Bought some potty training diapers so hopefully we will get to doing that soon.

Language:
Signing- More, sad, happy, dirty, hot, cold, all done, milk, thank you, please --We have slacked A LOT from signing this past month and we really need to get on it again!

Words- From the moment she wakes up to when she goes to bed she loves to talk all day.  We may not know what she is saying all the time, but she loves to talk.

Understanding- She mostly understands everything.  It's so crazy that we can tell two or three steps at a time and she will complete it all.  It's crazy because I think she is better at this then her daddy is at times (( I think it's a girl thing )) ;)

Let it go!

Loves her Daddy

Loves to type

Loving on sister in their matching outfits

Eating oatmeal for dinner! lol 

Helping mommy clean

looking so grown up!!

All ready for winter!

So cute!!

The Lord giveth and the Lord taketh away.

  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 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

Rochelle is 2 months (perfect in every way)!

Height: 20.5 inches

Weight: 8 pounds 5 oz.

Likes:
-Cuddling
-Food
-To get into her deep sleep only during the day
-Being rocked
-Car rides,  only when moving though
-Music (loves when we sing to her!)


Dislikes:
-Constipation issues
-Being moved from one position to the other when she's comfortable
-Changing her diaper
-Not being held when laying down


Language:
-Crying is pretty much her only form of language at this point. She loves to frown her cute little face at us when she is mad.

R.I.P Our precious baby girl.

Rochelle's daily schedule

  I have many questions asked to me wondering how it is to take care of Rochelle at home.  She seems like a normal average baby, just with a very strict schedule :)  She still wakes up every 1-2 hours throughout the night even though she is on continuous feedings, and loves to be held and snuggled.  Here is a look into what we do every day with our baby girl :)  (**Add in a hyper toddler all day who is also in diapers, it makes for some VERY interesting days)

  

0830am-0900 - Initial Morning Assessment &Medicine Time

-Check placement-PH by checking the residual (usual less than 5ml) and then placement of NG tube after putting the food back in, insert 1-2cm of air while simultaneously placing the stethoscope over the stomach and press down the syringe of air and listen to a “whooshing” sound

**Give her Lasix 0.4ml and Prevacid 1ml in her NG tube after residual has been checked, add half cap of miralax in morning feed

-Listen for bowel sounds-should hear a gurgling sound in all four quadrants of the abdomen

-Listen to her heart and get her heart rate. Listen for 30 seconds and multiply times 2.

-Measure her abdomen with the tape measure –should be between 32-36cm in the morning

-Check her temperature—Notify MD (Dr. Ramona) if above 101 degrees

-Put on splints with mitten covers

-Set the rate and the dose to the correct amount

-Get a new feeding bag and measure in half breastmilk/half formula and pour into bag and warm up in hot tap water in the pot

-Start the feeding and re-check the rate and dose before starting

-Pulse ox monitor for 5-10 minutes want the range to be 90-100

1200 (12:00P.M)-Feeding

-Check residual-(her usual is less than 1cm of residual) return all residual back in her NG tube and administer the noon meds

-Clean out feeding bag and flush with water then put new breastmilk/formula mix in the bag and warm it up in hot water in a pot until food gets warm(room temperature)

-Make sure volume total is cleared out to 0, that the rate and volume are correct, and then start the feeding

-Take off splints

1500 (3:00P.M)-Feeding

-Check residual-(her usual is less than 1cm of residual) return all residual back in her NG tube

-Clean out feeding bag and flush with water then put new breastmilk/formula mix in the bag and warm it up in hot water in a pot until food gets warm(room temperature)

-Make sure volume total is cleared out to 0, that the rate and dose are correct, and then start the feeding

-Put on splints with mitten covers

1800 (6:00P.M)-Feeding

-Check residual-(her usual is less than 1cm of residual) return all residual back in her NG tube

-Clean out feeding bag and flush with water then put new breastmilk/formula mix in the bag and warm it up in hot water in a pot until food gets warm(room temperature)

-Make sure volume total is cleared out to 0, that the rate and dose are correct, and then start the feeding

-Take off splints

2100 (9:00P.M)-Overnight Feeding &Medicine

-Check residual-(her usual is less than 1cm of residual) return all residual back in her NG tube

**Give her Lasix 0.4ml once in NG tube after residual has been checked

-Clean out feeding bag and flush with water then put 300 ml of new formula ONLY in the bag and warm it up in hot water in a pot until food gets warm (room temperature)

-Make sure volume total is cleared out to 0, that the rate is 27 ml/hr and dose is 270ml, and then start the feeding should end at 0700

-Pulse ox monitor for 5-10 minutes (want the range to be between 90-100)

(I had to write up this schedule for my mom and Shane in case I am ever not here they would know exactly what to do and when to do it)

Off to our every other week doc appointment 

Tummy time! 

Which then led to sister time :)