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.
Monday, January 19, 2015
Wednesday, January 14, 2015
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 )) ;)
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!!
Tuesday, January 13, 2015
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.
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
Saturday, January 10, 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.
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.
Saturday, January 3, 2015
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 :)
Wednesday, December 31, 2014
Best of 2014!
Although this has been an amazing year with a lot of ups and downs, we are so happy to be moving into 2015 at home with both of our girls healthy and happy. This time last year Shane and I spent the last moments of welcoming the new year at my best friends house, Brielle spent the night with my parents (can't believe she was 6 months old then!), and we were talking about our plans for this year and where we wanted to be as a couple and as a family. I hope everyone has a great time celebrating tonight and we wish everyone a happy and healthy new year!
- January
-Brielle turned 7 months
-Shane and I decided to officially start trying for another baby in February
-I started coming up with my first ideas for my blog
- February
-I wrote my first blog here
- Brielle turned 8 months and had her first Valentine's Day
- I decided to share Brielle's birth story
- March
-Shane and I celebrated our 9 year anniversary
-Brielle turned 9 months!!
-Found out that we were pregnant!
- April
-Brielle turned 10 months!
-We took Brielle's spring pictures and they turned out beautiful
-Brielle's first Easter was a hit! She loved Easter Egg Hunting
- May
-My first Mother's Day and Shane turned 27!
-Brielle turned 11 months!
-Brielle was full on walking!!
- June
-Brielle turned 12 months!
-Shane celebrated his first Father's Day
-We found out that it's a GIRL!
- July
-We found out at an 18 week check up that Rochelle had Trisomy 13
-Our first Echo was done on Rochelle in utero
-I came to realize it's ok to say no without feeling so guilty
- August
-I was 25 weeks pregnant with Rochelle
-We celebrated my 26th birthday early
-We had our second opinion from the cardiologist
- September
-I turned 26 and was 29 weeks pregnant!
-I wrote about having a week full of love
-It's so important to celebrate the little things
- October
-Shane and I celebrated our four year wedding anniversary
-I went into major nesting mode getting ready for Rochelle's arrival
-We took our fall family pictures
- November
-We welcomed our second gorgeous daughter into the world
-We stayed at the Ronald McDonald House for the first time
-I wrote about surviving the NICU
- December
-Brielle turned 18 months!
-We had our Christmas part 1 at my parent's house
-We survived our first hospital visit since being released from the NICU here!
Tuesday, December 30, 2014
Crazy Week in Review
So, as many of you may know, we spent Christmas week in the hospital taking care of our baby Rochelle. I will describe a little bit of what we went through and where we stand today. I just want to say first and foremost, thank you to everyone for the prayers sent to Rochelle. God healed her little body and she is back at home safe and sound.
On the early morning of Monday December 22, I started to notice that Rochelle was showing shows signs of increased effort of breathing, and her rate of breathing was increased. I hooked her up to the portable pulse ox machine (which measures her oxygen percentage) in her body and she was in the 80's (which is suppose to be 90-100) at 1/4L on her concentrator. I hooked her up to the spare oxygen tank and increased her flow to 1 liter and her sats were still low and not going up. After doing everything I could at home, I called Shane at work and told him to come home immediately knowing that we needed to take Rochelle to the ER. I called my small town ER and told them what was going on (she was in Respiratory Distress) and knew she needed to be closely monitored to see what might be happening. They quickly life-flighted her to Dell's Childrens Meidcal Center in Austin (Shane got to fly with her while I packed up the house and all of her equipment, the dogs and their kennels to stay at my parents and drove to the hospital from Yoakum) Thank goodness that my parents were already watching Brielle that weekend which worked out perfectly for her to stay there a few extra days.
When I arrived to the hospital her x-rays were showing signs of atelectasis (collapse of the lung), and increased vasculature, so they wanted to start her on antibiotics right away in case of a possibility of pnemonia, and for the respiratory therapy to provide albuterol breathing treatments every 4 hours and CPT (chest physiotherapy) to break up the secretions in her lungs.
The next day (Tuesday morning), the doctor ordered to increase the amount of lasix (to remove the extra fluid off of her body) from once a day at home to three times a day. He also ordered to give her a potassium replacement replace what is getting lost while on Lasix, continue CPT and albuterol, continue her on an IV with D10W (because her sugars were a little low), and place a PICC line, continue the antibiotic regimen, and place her on a CPAP machine to help her breathing.
Wednesday (Christmas Eve), the plan of the day was to take her off her breathing machine (CPAP) and put her on a high-flow oxygen, try to start feedings again through the NJ tube (nasojejunum) and keep the stomach empty, change the fluid pill (Lasix) to twice a day instead of three times a day, continue IV fluids until we know she can tolerate her half breastmilk/half formula feedings, continue CPT and albuterol, blood gases and an x-ray to be drawn in the morning.
Thursday morning (Christmas Day), the plan was to the increase the feedings by a small amount, continue CPT and change her albuterol to as needed, switch from the high flow oxygen to the regular nasal cannula that we were using at home, discontinue the IV antibiotics since they ruled out viral or bacterial pneumonia, and continue the lasix to twice a day.
Friday morning the only change was to increase her lasix to three times a day due to an increase in haziness in her lungs from the x-ray taken that day. The doctor loved her improvement and stated that we will be making way to leaving tomorrow.
Saturday morning the doctors stated that Rochelle was doing great, all of the treatments and therapies worked tremendously and a LOT faster then they thought and they would discontinue the IV fluids, take out her NJ tube and place back her NG tube for feedings to resume at home, discontinue the PICC line and CPT and we will moved to the step down unit called IMC for one more night of monitoring before being able to go home.
Sunday morning we were told we were able to go home!!! Best news all week, Rochelle did amazingly all week with all of the changes she had to go through, and by the grace of God she stayed strong and came out stronger then ever!! We are going home with Lasix to be given twice a day in her NG tube, prevacid for her reflux to be given once a day, miralax to be given in the morning with her feeding and oxygen to remain the same at 1/4L on the oxygen concentrator.
Sorry for making this all about the facts, but Rochelle endured a LOT this past week and she is so amazing and strong. People say we (Shane and I) have amazing faith and strength, little do they know our baby girl Rochelle has gone through more than we can ever imagine. God gives her amazing strength and no one ever expected us to be here to this day being able to write about our little blessing. She is AMAZING, not us. We are so happy to be home with our girls and thankful for my mom able to be here with me and help me out with the girls while Shane went back to work this week after taking last week off.
**Thank you to everyone who helped make our girls have a wonderful Christmas, and took time to come visit in the hospital or bring gifts for the girls, we appreciate you all so much! :)
Thank you to these amazing men for getting Rochelle stable, safe and sound to Austin.
On the early morning of Monday December 22, I started to notice that Rochelle was showing shows signs of increased effort of breathing, and her rate of breathing was increased. I hooked her up to the portable pulse ox machine (which measures her oxygen percentage) in her body and she was in the 80's (which is suppose to be 90-100) at 1/4L on her concentrator. I hooked her up to the spare oxygen tank and increased her flow to 1 liter and her sats were still low and not going up. After doing everything I could at home, I called Shane at work and told him to come home immediately knowing that we needed to take Rochelle to the ER. I called my small town ER and told them what was going on (she was in Respiratory Distress) and knew she needed to be closely monitored to see what might be happening. They quickly life-flighted her to Dell's Childrens Meidcal Center in Austin (Shane got to fly with her while I packed up the house and all of her equipment, the dogs and their kennels to stay at my parents and drove to the hospital from Yoakum) Thank goodness that my parents were already watching Brielle that weekend which worked out perfectly for her to stay there a few extra days.
When I arrived to the hospital her x-rays were showing signs of atelectasis (collapse of the lung), and increased vasculature, so they wanted to start her on antibiotics right away in case of a possibility of pnemonia, and for the respiratory therapy to provide albuterol breathing treatments every 4 hours and CPT (chest physiotherapy) to break up the secretions in her lungs.
The next day (Tuesday morning), the doctor ordered to increase the amount of lasix (to remove the extra fluid off of her body) from once a day at home to three times a day. He also ordered to give her a potassium replacement replace what is getting lost while on Lasix, continue CPT and albuterol, continue her on an IV with D10W (because her sugars were a little low), and place a PICC line, continue the antibiotic regimen, and place her on a CPAP machine to help her breathing.
Wednesday (Christmas Eve), the plan of the day was to take her off her breathing machine (CPAP) and put her on a high-flow oxygen, try to start feedings again through the NJ tube (nasojejunum) and keep the stomach empty, change the fluid pill (Lasix) to twice a day instead of three times a day, continue IV fluids until we know she can tolerate her half breastmilk/half formula feedings, continue CPT and albuterol, blood gases and an x-ray to be drawn in the morning.
Thursday morning (Christmas Day), the plan was to the increase the feedings by a small amount, continue CPT and change her albuterol to as needed, switch from the high flow oxygen to the regular nasal cannula that we were using at home, discontinue the IV antibiotics since they ruled out viral or bacterial pneumonia, and continue the lasix to twice a day.
Friday morning the only change was to increase her lasix to three times a day due to an increase in haziness in her lungs from the x-ray taken that day. The doctor loved her improvement and stated that we will be making way to leaving tomorrow.
Saturday morning the doctors stated that Rochelle was doing great, all of the treatments and therapies worked tremendously and a LOT faster then they thought and they would discontinue the IV fluids, take out her NJ tube and place back her NG tube for feedings to resume at home, discontinue the PICC line and CPT and we will moved to the step down unit called IMC for one more night of monitoring before being able to go home.
Sunday morning we were told we were able to go home!!! Best news all week, Rochelle did amazingly all week with all of the changes she had to go through, and by the grace of God she stayed strong and came out stronger then ever!! We are going home with Lasix to be given twice a day in her NG tube, prevacid for her reflux to be given once a day, miralax to be given in the morning with her feeding and oxygen to remain the same at 1/4L on the oxygen concentrator.
Sorry for making this all about the facts, but Rochelle endured a LOT this past week and she is so amazing and strong. People say we (Shane and I) have amazing faith and strength, little do they know our baby girl Rochelle has gone through more than we can ever imagine. God gives her amazing strength and no one ever expected us to be here to this day being able to write about our little blessing. She is AMAZING, not us. We are so happy to be home with our girls and thankful for my mom able to be here with me and help me out with the girls while Shane went back to work this week after taking last week off.
**Thank you to everyone who helped make our girls have a wonderful Christmas, and took time to come visit in the hospital or bring gifts for the girls, we appreciate you all so much! :)
On her CPAP.
Loving her new toy!
smiling at Santa
Trying to convince me to hold her (which worked we finally convinced the nurse to let us to hold her!)
Surviving with video chats from Brielle.
loving on my bundle of joy
Almost ready to go home!
Leaving the hospital! YAY!
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