10 months since..

10 months since..

This month I believe the word to describe how I am feeling now is clarity. I now have more clarity than ever before, more understanding of what’s to come, and just more desire to just really help others and listen to others.  I feel like if I can help one person and/or family by sharing my story, my precious angels, and what all I have been through, it just may make things a little easier, or at least give them hope when they feel like there is none left.

Yesterday as I was driving home from celebrating Rochelle’s first birthday, I looked up and noticed the sun was setting, and this has become one of my favorite things to look at and admire this past month. I actually notice now all of the different shades of greys, blues, pinks and whites in the clouds and the shapes and textures,  that just seem more bold than ever before.  I notice the crispness in the trees, and  all the different hues of green, orange, and and brown. Photography has definitely helped me describe my feelings through the beautiful pictures, and I love it.

My mom came up with an idea on what we should do to carry on her name, and to really help other babies that have been in her similar situation. It just makes you realize that even the most simple thing can seem to make the biggest difference to someone, especially those who have been in our shoes. I am SO excited to share what we have planned, as soon as is comes to pass. Please pray that our thoughts/ideas come true and that our hands can help just one baby in the NICU, who is right where we started, with their parents sitting and praying for hope, recovery, and healing.

I must never forget that God’s working miracles in our lives everyday and even though we cannot see them or protect them from happening,  I really want to make sure my heart and mind remain open at all times for anything good, or bad. I can’t believe just yesterday we were all together as a family celebrating, just as we would if she were here with us. In her honor, I will share some of my favorite pictures from our beautiful day.

Brielle writing in her sisters birthday card.
Brielle writing in her sisters birthday card.
SUCH a beautiful photo that could never be planned or re-created.
SUCH a beautiful photo that could never be planned or re-created.
Helping mommy with her cake!
Helping mommy with her cake!
Rochelle is 1!
Rochelle is 1!
Cake!
Cake!
Beautiful still photo of Brielle and her cousins.
Beautiful still photo of Brielle and her cousins.
My beautiful prayer before my balloon release
My beautiful prayer before my balloon release
Stunning.  Hope you love them Rochelle!
Stunning. Hope you love them Rochelle! #pinkforRochelle

A Day in Rochelle’s Life

rochelle daily.jpg

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.