I was pondering on my days and have thought for awhile that I might share what a day here looks like. I know that it must be hard to imagine and I would love to have you know. I have had dear friends offer help - and honestly I would LOVE that but some days don't even know what to suggest. I'm so overwhelmed and sleep deprived that my brain has long since stopped being clear. I have loved it when someone just decided to help in some way and then did it. It's hard to know what to ask for sometimes. I really am happy and grateful to receive help though.
Here's what the last 24 hours have looked like at our house.
12:00midnight - Feeding Eliana. She was awake so I first feed her by bottle until she fell asleep. She took an ounce which for her is pretty good these days. Then I hook up her feeding tube. Her feedings involve warming breastmilk/formula and then adding powdered formula to this liquid to boost the calories. Then the liquid is poured into the bag. We check Eliana to make sure her tube placement is stlll correct. This is done by attaching a syringe with air to her feeding tube. Listening to her stomach with a stethoscope while pusing the air into the tube. If the placement is correct, you hear a "whoosh" sound. Thankfully we've always heard that! Feeding by tube takes about an hour - less if she has eaten by bottle.
1:00am - Shut off the pump. Disconnect the pump tube from Eliana's feeding tube. Clean out her tubing with 1cc of water.
Go downstairs and do some prep for dinner for tomorrow. I haven't cooked much at all thanks to many meals delivered to us - but this week I'm cooking.
1:30am - Pump. I'm still trying to express breastmilk. It's hard and my supply is low. She does occasionally nurse which is sweet. I'm still not sure I can hang on much longer. This has been physically and emotionally draining. I often pump for about an hour at a time. :( Prayers for wisdom are always appreciated.
I use this time to check emails and try to respond. I'm really far behind though and don't think I'll be able to catch up. I've greatly appreciated the support I've received via email. It's amazing the good of an encouraging word!!! Don't ever underestimate the powerful effect of encouragment on someone else! I also use this time to read the FIAR website - and to type in my blog.
3:00am - Time for another feeding. After getting Eliana set up and washing some bottles I head to bed. This is typically when I go to sleep. I know - it's too late. Between pumping and feeding it has just been easier to stay awake.
4:00am - Cut off the pump.
6:00am - Eliana's feeding. This one is Roger's turn and I'm thankful to sleep through it!
9:00am - Time for another feeding. When I go to check on Eliana I find that her pump part was not closed and formula has leaked out and onto her bedding. I take Eliana out of the crib and set up another place for her to be fed. I change her diaper and dress her. Give her both meds. Start the feeding. Strip the crib linens and wash them. Start to pump.
10:20am - End Eliana's feeding and my pumping. The children have been watching Liberty Kids on tv and playing. Rebecca does a great job of playing with the boys in the mornings!
Go down to start a crockpot dinner. Talk with the children. Get dinner finished and thankfully check on it a little later. I forgot to plug it in. So glad to have found that mistake now!
11:00am - Check on laundry. Shower and dress. Clean some downstairs. Talk with the children.
Shower and dress. Pack laundry bag. Get children started on lunch.
12:00 noon- Time for the next feeding as well as time to pump. Use this time to read my Bible, pray and read some online.
1:00pm - Stop feeding. Prepare to leave for dr appt. Yes, it is midday and I have done nothing but feed and pump. *sigh* Not all days are quite like this. It's harder when I need to leave the house as I really have to watch the time. It's much easier to just be home!
1:40pm - Cardiology appt at Duke. I'm so thankful to be close to a great medical facility! What a blessing!! Don't have to wait too long. We meet first with a nurse to check on her vitals. I was excited to check on her weight gain. She had gained 7 ounces last week in 5 days remember? It had been 6 days since then. When her weight came up it was in kilos first (I can't translate) and then pounds - 9 pounds and 2.4 ounces. Only a 1.4 ounce weight gain. I was disappointed to say the least.
Met with the cardiologist. Roger came with me to most of the appts during the first 6 or 7 weeks. With a major surgery coming up, we feel it's best that he spend the time at work now and I go to the appts alone. The cardiologist felt that her weight gain was probably due to the amt she was consuming. We hadn't changed her amt with the most recent weight gain - so that is what we are doing now. Up to 85ml per feeding. We are to watch for signs of her not being able to tolerate this amount (spitting up) and then decrease it if that happens. He thinks her heart is doing well. Her med amounts are still good.
I told him that it was driving Roger a little crazy not knowing the surgery date. He said he would work on it. I told him that we were both fine with waiting and even pushing back the estimated date as that would be best for Eliana. Dr. C told me that he thought we'd be able to plan her surgery - and not have to do it as an emergency based on how she was doing. That was great to hear! We should have a 1 to 2 week notice of her surgery to get things lined up at home.
We will see Dr C again in 2 weeks - well, 2 weeks and a day so that we don't have to meet on Christopher's birthday. We'll see the pediatrician next week. I like that Eliana is being monitored so closely. She is in good hands.
3:20pm - Leave dr appt for home. It's never a quick thing to go to a dr anymore.
3:45pm - Arrive home. Exchange feeding bag for a new one. They need to be changed every 24 hours. Prepare formula and then prime the bag so that it is ready to go. Eliana is awake and takes an ounce by bottle. The rest of the feed is done by tube.
4:45pm - Finish the feed.
5:00pm - I pump again. I talk with the children as they wander in. I've used this time for reading aloud and doing some other things with the children - though not as much as I'd like. Visit with my friend.
6:30pm - Work on finishing dinner.
6:45pm - We are off of our 3 hour routine a little bit so I'm adjusting the times until we can get back on schedule. Eliana eats some by bottle and then finishes by tube. When she is finished I eat dinner with the rest of the family. Then we clean up.
8:20pm - Decide to make a quick run to the craft store. Two oldest go with me. This is only the 2nd time I've left the house to run an errand since Eliana has been born. Only the second time I've been without her. Both were short times.
We buy beads at the store. My daughter is making bead bracelets to sell to raise money for other children needing heart surgery. She has been so touched by her sister's heart condition that she wanted to raise money for other children that might not be able to afford it. She has mainly sold bracelets around the neighborhood. She has raised about $80 (I think) so far. I don't really know where she can go to sell these? (If you have ideas - please share them!) I did call a friend who is going to let her sell them at a Mom's event on Fri night at our church. So, she'll be busy making bracelets and working on a sign to prepare for this opportunity.
9:10pm - Arrive home and prepare for another feeding. Admininster meds first. Again she takes a bottle and then finishes by tube.
10:30pm - Pump. Talk with Roger.
Then at midnight we start the feeding cycle again. Some days feel better than this one. I am looking forward to more time with my children tomorrow. I am thankful that they are happy playing, reading books, watching some movies and entertaining each other when I can't be with them. They love their little sister so much and really have done so well with the amount of time and care that she needs. I'm so thankful for that.
If you have hung in this long ... bless you! Not sure if this was interesting or helpful, but this was a day in our lives.
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