Evangeline has been home with us for almost a month now (already?!) and we've finally created a routine...it's a "new normal" for all three of us! Currently life consists of drawing up medications, breastpumping, cleaning bottles/breaspumping accessories/syringes, feeding our baby and changing diapers. When Evangeline was born at 6 months gestation, our routine consisted of us going to the NICU for 88 days. It was exhausting and difficult, but it was the only way to see our baby (we can't stress how thankful we are that she's home!)
And well, just as we got used to this "new normal," I'm going to have to get used to another "new normal" in about 2 weeks! Why? Because Kevin will be going back to work, since his paid-time off will end soon! Honestly, having a baby is already life-changing as is. But to have a baby with special needs is a lot of work! It's like an overtime job! I always ask Kevin, "What am I going to do when you go back to work?!" And he says, "I have NO idea..."
Since we barely go out of the house now because of Evangeline's sensitive immunity (we only go out for doctor visits, which is about 2 times a week on average) I thought I'd make a timeline of our "new normal" current routine. I do this because sometimes people ask what it's like to have her home, and I know I'll miss it once Kevin goes back to work. Here's a peak into our daily life at home with Evangeline.
7:45 am to 8:45am: Get up and start our day! Kevin prepares her 8 o'clock medications (Diuril, erythromycin, omeprazole) and gets frozen breastmilk, thaws it, and puts it in bottle warmer. I wake up Evangeline and change her diaper. I breast pump for 20 minutes as Kevin feeds and burps her.
8:45 am to 9:30 am: Sometimes after she's done eating we just talk to her and start our day together. Other times we put her in bed with us and just play. One of us eventually washes bottle parts (Dr. Brown bottles are the WORST to wash with their mini-parts!) and breast pumping accessories. Make a quick breakfast. Move Evangeline's Pack N' Play and apnea monitor from the bedroom and into the living room.
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9:30 am: Give Evangeline her heart medication (we usually just syringe it into her mouth with a pacifier to make sure she doesn't spit it out): digoxin, 0.18 mL
9:30 am to 12:00 pm: Evangeline is awake during this time, so we practice some tummy-time or side-lying positions for at least half an hour. We get a few more things done (bills, more cleaning, etc.) Tummy-time is extremely beneficial for infants because it helps them distribute body weight onto their arms, helps them learn how to lift their heads, and they gain more muscle strength as a result!
12:00 pm to 1:00 pm: Kevin prepares her 12 o'clock medications (erythromycin, arginine, and caffeine citrate) ) He gets some of my frozen breastmilk (around 70 ml's), thaws it in warm water for a few minutes, then puts it in the Dr. Brown bottle warmer. After drawing up the right amount of medications and checking the temperature of the milk, he puts the medicine in the milk and gets ready to feed baby girl. As he does this, I change Evangeline's diaper as she cries (she ALWAYS cries when her diaper is changed!) I swaddle her and get her washcloth. Then as Kevin feeds her, I breast pump for 20 minutes. When I'm done, I put her respiratory medicines (albuterol, budesonide) into the nebulizer and put it over her nose for 30 minutes as she breathes it in.
1:00 pm to 4:00 pm: Evangeline naps! Time to get more stuff done. We prepare lunch and eat, enjoying time together. Clean more in the kitchen (dishes, breast pumping parts, bottles, etc.) Do laundry. Read or hang out. Kevin feeds the dogs then walks them to the park nearby for an hour. I breast pump again.
4:00 pm to 5:00 pm: Evangeline wakes up crying bc shes's hungry. I change her diaper. I am only allowed to breastfeed once or twice a day (she needs fortifier added into the breast milk bc she's a preemie, and that is why I breast pump and save the milk for her) so I use this time to bond with her. Breastfeeding is wonderful and stressful at the same time, because Evangeline gets easily frustrated. She's so used to the bottle's nipple which delivers a lot of milk at a quick rate. My let-down takes a few minutes so she cries until she realizes she just needs to keep going. Poor baby! But then she ends up falling in and out of sleep since she's so comfortable against my skin.
5:00 pm to 7:30 pm: Evangeline is napping so we do more cleaning (it's like the bottles and breast pumping parts never end!) I breast pump again. And then I prepare dinner. We eat dinner together.
7:30 pm to 9:00 pm: We change her diaper. Give her a bath. Prepare her milk and medications (omeprazole, multivitamins) We know this feed will take a while because shes HATES her multivitamins. Her occupational therapist was saying that Evangeline likes to "shut down" when she's not interested in food. At first you think Evangeline has fallen asleep while drinking the milk and medicine, but you can see her fluttering her eyelashes and just IGNORING her food! It takes forever to keep telling her to take her medicine! But honestly, I feel bad for the poor thing because that medicine looks and smells gross so I don't blame her lol. Finally she finishes! She goes back to sleep. I breast pump again.
9:00 pm to 11:30 pm: Clean dishes from dinner, plus breast pumping parts and bottles. At 9:30 pm give her heart medication (digoxin) Free time!!! We enjoy each other's company until it's time to prepare her midnight medicine and feeds.
11:30 pm to 1:00 am- It's time to prep for Evangeline's midnight medicine (omeprazole, erythromycin, arginine and Diuril) and thaw her frozen breast milk and warm it up. I change her diaper. Kevin feeds her. Then we give her respiratory medications (albuterol, budesonide) and of course, I breast pump again!
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1:00 am to 4:00 am: Sleep...precious sleep...
4:00 am to 5:00 am: Time to breast pump. Wake up annoyed baby and sleepy husband. Kevin sleep walks to kitchen to warm the frozen breastmilk (no medications during this time, thank God!) I change her diaper, kiss her, then breast pump. Kevin feeds baby, burps baby, then holds her for 10 minutes upright because she has reflux. Put baby back down in bassinet.
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5:00 am to 7:45 am: Sleep!!!!! Thank God for sleep!
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And well, just as we got used to this "new normal," I'm going to have to get used to another "new normal" in about 2 weeks! Why? Because Kevin will be going back to work, since his paid-time off will end soon! Honestly, having a baby is already life-changing as is. But to have a baby with special needs is a lot of work! It's like an overtime job! I always ask Kevin, "What am I going to do when you go back to work?!" And he says, "I have NO idea..."
Since we barely go out of the house now because of Evangeline's sensitive immunity (we only go out for doctor visits, which is about 2 times a week on average) I thought I'd make a timeline of our "new normal" current routine. I do this because sometimes people ask what it's like to have her home, and I know I'll miss it once Kevin goes back to work. Here's a peak into our daily life at home with Evangeline.
Our Daily Routine
(These are all of her medications lined up and ready for action!)
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(Good morning, beautiful!)
9:30 am: Give Evangeline her heart medication (we usually just syringe it into her mouth with a pacifier to make sure she doesn't spit it out): digoxin, 0.18 mL
9:30 am to 12:00 pm: Evangeline is awake during this time, so we practice some tummy-time or side-lying positions for at least half an hour. We get a few more things done (bills, more cleaning, etc.) Tummy-time is extremely beneficial for infants because it helps them distribute body weight onto their arms, helps them learn how to lift their heads, and they gain more muscle strength as a result!
(During tummy-time, she also likes looking at the patterns in her playground!)
12:00 pm to 1:00 pm: Kevin prepares her 12 o'clock medications (erythromycin, arginine, and caffeine citrate) ) He gets some of my frozen breastmilk (around 70 ml's), thaws it in warm water for a few minutes, then puts it in the Dr. Brown bottle warmer. After drawing up the right amount of medications and checking the temperature of the milk, he puts the medicine in the milk and gets ready to feed baby girl. As he does this, I change Evangeline's diaper as she cries (she ALWAYS cries when her diaper is changed!) I swaddle her and get her washcloth. Then as Kevin feeds her, I breast pump for 20 minutes. When I'm done, I put her respiratory medicines (albuterol, budesonide) into the nebulizer and put it over her nose for 30 minutes as she breathes it in.
1:00 pm to 4:00 pm: Evangeline naps! Time to get more stuff done. We prepare lunch and eat, enjoying time together. Clean more in the kitchen (dishes, breast pumping parts, bottles, etc.) Do laundry. Read or hang out. Kevin feeds the dogs then walks them to the park nearby for an hour. I breast pump again.
4:00 pm to 5:00 pm: Evangeline wakes up crying bc shes's hungry. I change her diaper. I am only allowed to breastfeed once or twice a day (she needs fortifier added into the breast milk bc she's a preemie, and that is why I breast pump and save the milk for her) so I use this time to bond with her. Breastfeeding is wonderful and stressful at the same time, because Evangeline gets easily frustrated. She's so used to the bottle's nipple which delivers a lot of milk at a quick rate. My let-down takes a few minutes so she cries until she realizes she just needs to keep going. Poor baby! But then she ends up falling in and out of sleep since she's so comfortable against my skin.
5:00 pm to 7:30 pm: Evangeline is napping so we do more cleaning (it's like the bottles and breast pumping parts never end!) I breast pump again. And then I prepare dinner. We eat dinner together.
7:30 pm to 9:00 pm: We change her diaper. Give her a bath. Prepare her milk and medications (omeprazole, multivitamins) We know this feed will take a while because shes HATES her multivitamins. Her occupational therapist was saying that Evangeline likes to "shut down" when she's not interested in food. At first you think Evangeline has fallen asleep while drinking the milk and medicine, but you can see her fluttering her eyelashes and just IGNORING her food! It takes forever to keep telling her to take her medicine! But honestly, I feel bad for the poor thing because that medicine looks and smells gross so I don't blame her lol. Finally she finishes! She goes back to sleep. I breast pump again.
11:30 pm to 1:00 am- It's time to prep for Evangeline's midnight medicine (omeprazole, erythromycin, arginine and Diuril) and thaw her frozen breast milk and warm it up. I change her diaper. Kevin feeds her. Then we give her respiratory medications (albuterol, budesonide) and of course, I breast pump again!
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(You can't see it in the photo, but there is a soft mist on Evangeline's face. This is part of her respiratory treatment.)
1:00 am to 4:00 am: Sleep...precious sleep...
4:00 am to 5:00 am: Time to breast pump. Wake up annoyed baby and sleepy husband. Kevin sleep walks to kitchen to warm the frozen breastmilk (no medications during this time, thank God!) I change her diaper, kiss her, then breast pump. Kevin feeds baby, burps baby, then holds her for 10 minutes upright because she has reflux. Put baby back down in bassinet.
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(Kevin is half-asleep here at 4:00 am. But Evangeline is awake, hungry, and intently gazing at daddy's face!)
5:00 am to 7:45 am: Sleep!!!!! Thank God for sleep!
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...And that's it! Just another normal day in our household!
Praise the Lord for days like these,..because I know we will miss it once she's older!
We love you, Evangeline!
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