The Lord giveth and the Lord taketh away.

The Lord giveth and the Lord taketh away.

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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.

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

A Day in Rochelle’s Life

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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 🙂

©2015 Sheridan Johnson @Journey with the Johnsons. All Rights Reserved.