A day in the life a Heart Mom


I get asked quite a bit,

“So…what’s your day like?”

I started recounting my day to one of my friends.  I watched her eyes grow wide as I went through the play by play of day.

I didn’t realize how it sounded…that was so much.

I get lots of, “I couldn’t do, what you do.”

I look at whomever said that statement and say, “You could.  And you would…if you know it means keeping your child alive.”

That’s the bottom line.  My day isn’t “so much”  because it’s just my day.

Another day I get to take care of my very special son…with a very special heart.

 

12:30 AM – turn off Evan’s feeding pump that started an hour prior.

Depending on the day and on his weight gain….

2:30 AM – wake and set up a feed.  Make milk, heat up water to warm it up (it hurts his tummy if we give it cold), put it in feeding bag, and start pump.

I use a stethoscope to check for his feeding tube placement.  I insert air into his tube via an empty syringe and put the stethoscope over his tummy and listen to a swoosh of air.  I, then, listen to his heart to see if there any changes in sounds, loudness of the heart sounds…

He doesn’t like it….

2:30 AM – 3:30 AM – Evan’s feed.  We set it over an hour to help with his reflux issues.  I normally stay awake in case he spits up or vomits.  Which, unfortunately, is all too often

3:30 AM – turnoff feed.

4:45 AM – Medication

5:30 AM -6:30 AM –  Evan’s feed – normally done by Craig during the week.

Daddy duty

7:00 AM – Good morning to my Evan and my Iz!

Waiting for breakfast

7:15 AM – Breakfast for my two littles

8:30 – 9:30 AM – Another feed


Getting “plugged” in for his feed

10:00 AM – work on physical therapy stuff – aka – PLAYTIME!

Playtime!  He’s in a Bumbo working on head control  We put toys in front of him to encourage to use his upper body to reach.  In heart babies, the oxygen priority of the body goes – brain, kidneys and adrenal gland, gut, and the large muscle groups.  Many of our babies are behind in gross motor development for reasons of extended hospital stays (like my Evan) or because their hearts have a difficult time keeping up with the oxygen requirement for those large muscle groups.  

10:30 AM – Medication and check his oxygen levels, heart rate and respiratory rate

Oxygen check!

11:15 AM – Lunch and oral exercises during lunch.  I introduce different textured items – brushes, spoons, etc – with food.

11:30 AM – 12:30 PM – Another feed

1:3o PM- Medication

We administer medications through his tube.  

2:30 – 3:30 PM – Another feed

4:00 PM – Physical therapy stuff

4:30 PM – Medication

A day worth of meds

12 hours worth of meds pre-drawn for easy administration or to pack up for the day if we are out and about

Bottle Drying rack also doubles as a Syringe Drying Rack!

Sad but necessary…hundreds of syringes

5:15 PM – Dinner

5:30 PM – 6:30 PM – Another feed

6:45 PM – Get weight for the day

7:oo PM – Bath

7:15 PM  – 7:30 PM – Bedtime

7:30 PM – medication

8:30 – 9:30 PM – feed, oxygen level check

10:30 PM – Medication

11:30 PM – 12:30 AM – Feed.

 

Rinse and repeat.

 

Medications are spaced out because Evan has a hard time with volume in his tummy.  Also, 2 out of the 7 medications are for his reflux – so we time those out to coordinate with his feeding schedule.

For his feeds, we can typically do them awake or asleep.  We just plug him in and let the pump go….eating while sleeping…every guy’s dream 😉


Sometimes the day is exhausting

You can imagine how are days work out when we have doctor visits or therapy.  We often “eat on the go”, pack up medications, food, Boppy (for impromptu physical therapy anywhere that we can lay down a blanket).

And somewhere in our day we find time for a nap…or hopefully two, dance party, singing songs, reading books…

We also find time for hugs, kisses, and prayers…

A day in the life of a (this) a Heart Mom.

 

 

 

Comments

  1. I remember those days perfectly and you said it very well, how can you NOT do it. It is for our children and anyone in our shoes would do the same, but until you are faced with the challenges you don’t really know how you would ever overcome them. Also with greater challanges I believe come great REWARDS. Not to say that other parents don’t cherish their moments with their children, but there is a level that us heart parents only have. Finally, I want to tell you that it does get easier after a while, once you are able to drop a few meds and Evan begins to eat on his own and not depend on the NG, whenever that happens for you, it does get easier. Hang in there. (BTW, I love reading your posts) Heart Hugs Mama L<3

  2. I totally remember those days. It seems absolutely crazy to those outside our little world but like you said, anyone can do it if their child’;s life depended on it. The things we do….and the very little amount of rest/sleep we can survive on….for our children. From one heart mom to another, one day those “busy” days will fade to a thing of the past and you’ll blow your mind when you sit down and try recall what all you actually did in one day all those years ago.

  3. I remember watching a friend help her father through his last days. He had cancer, and had hit the point where nothing more could be done. I remarked to her mother one day, “I don’t know how she does it. I don’t think I could do it.” I’ll never forget, her mom turned to me, looked me right in the eyes and said, “You just do it. You just do. And if it was you, you’d do it too. You just do.” Fast forward a year and we have our babe facing OHS. I remember a lot of people saying, “Oh, I don’t know how you do it.” You just do. I don’t think it’s anything special or heroic, what we did anyway, we just did. It was life. Not what we expected or planned for, but what we got. Until you’re faced with it, whatever it is, you just don’t think you have it in you, but we all do. That strength is there.

  4. Emma's Nana Jana says:

    I love to read your blogs because they are so honest. Even though I’m the Nana and not our Emma’s Mom, I find myself going through many of the same roller coaster rides as you do emotionally. The fact that my only granddaughter, my only son and daughter-in-law’s only child, has HLHS is really hard to bear; I don’t like to know that she suffers at times and struggles so hard with therapies and hospital visits and necessary isolation. Added to that is the fact that my only daughter is battling cancer, which is also extremely difficult. But like you, I choose (on the days when I am stronger) not to wallow in the WHYs, because there is no answer other than the one my daughter gave me: “We are all human, and so we struggle against the things any human might have to face. God doesn’t send the bad things, but He is always here to help us through the journey, whatever it entails.” And then I take my son’s quote: “God is good all the time, and all the time God is good.” Remembering these two quotes and the video of Emma smiling and in her big voice saying “Hi” to the camera – those and other of God’s small but tender mercies help me to make it through the more difficult days. May He help you through, and sustain you, too. And, you’re right: We are the lucky ones to be gifted with these amazing warriors; God knew they had a lot to teach us!
    HUGS from Emma’s Nana Jana <3