We have now been home for a week. And we are starting to settle into our new normal. It goes a little like this:
7:15- Beckett stirs in his bed. Addie also comes in the room. “Hi Beckett!” I smile and lay in bed for a few more minutes while my oldest sweetie talks to her little brother.
7:30- Beep! Beep! Beep! Beckett’s TPN and lipids are done. We have to unhook the tubes, saline flush his picc line and then flush it with heparin to prevent clots. We finish by placing a sterile alcohol cap on the end. We pick him up and cuddle on him now that he is tube free.
8:00- Rae starts to stir and Shawn prepares all of Beckett’s meds. 6 in the morning. A vitamin supplement, two diuretics, an antibiotic, a blood pressure med and a med to help keep his bile thin. He puts all the meds into Beckett’s feeding tube. Thank goodness for the feeding tube so we don’t have to fight him to choke them all down.
From 8:15-9:00 we get ready, head downstairs, let the dog out, feed Beckett, eat breakfast, sometimes get the girls dressed, and Shawn heads to work.
9:00/9:15- Tuesdays and Thursdays Addie goes to preschool. Oh how lucky I am to have a neighbor who takes her and picks her up. I don’t know how I’d do it. Beckett gets tired and I take him upstairs. Thankfully, he is starting to get back to his old self and has been putting himself to sleep.
9:15-11:00- The girls and I play, I clean, they play and make messes, we work on potty training Rae, I stop fights, we snuggle.
11:00- Beckett wakes. He is hungry again. He takes 2.5 ounces. It’s amazing. He used to only take 1 ounce every 4 hours. So this is huge for him. He now gets excited to see the bottle. We are making progress!!
Noon- I feed the girls and myself. Usually something easy like sandwiches or soup but sometimes I feel ambitious and make spaghetti or stir fry.
12:30- Nap time/Quiet time. Oh I love this time. It’s crazy getting the girls situated in their beds. And we just switched Rae to a big girl bed so it’ll be interesting to see if this time exists anymore. Once the girls are down Becks and I get a little time to ourselves before I put him in bed.
1:00- Beckett goes down for another nap. I head downstairs and clean up the kitchen. Straighten up the house a little and then I get to sit down. I either nap a little or I watch a show.
2:00- Addie’s done. She comes down to get a snack and watch a show while her siblings sleep. I clean some more or read a little.
3:00- Beckett and Rae get up. (Oh please Rae! Please take a nap in your big girl bed today!!) I feed Beckett again.
3:00-5:00- This is the time I usually get a lot of phone calls. The liver clinic will call, or home health. We change his meds every few days based on his labs. And home health is constantly talking to me about bringing me deliveries of NG tube supplies, or picc line supplies or the pharmacist calls to discuss his TPN and lipids. I also get calls from the home health nurses checking in and seeing if his picc dressing needs to be changed. Then I get calls from the delivery drivers letting me know when they will be coming by. The girls and Beckett just play and make messes. I love hearing the laughter and coos.
4:30/5:00- I put Becks down for a mini nap. And then I finally start thinking about dinner. Sometimes I make something nice. Sometimes I’m super prepared and throw something in the crockpot around 3. Other times we just make grilled cheese. Or grab take out.
5:30-7:30- Shawn gets home from work, we eat, we clean up, we play, we dance, we feed Beckett. Then we like to watch a movie together and eat popcorn or ice cream.
7:30- The utter chaos starts. I head to the fridge and pull out Becks TPN, lipids and vitamins. I head upstairs to get it all ready and Shawn starts working with the girls to get them ready for bed. I’ve gotten pretty quick with setting up the TPN and lipids. I have to set the pumps up, prime the tubing, infuse the vitamins into the TPN bag, connect all the tubing, and change the end of his picc line. All while keeping everything sterile and clean. If I touch things, I have to start all over again. It’s quite the process. Meanwhile Shawn is battling the girls, getting jammies on, getting them to go potty, cleaning their rooms. Finally we reach a point where we all gather together, sing songs and say prayers. Then we put all three kids down. And then battle them to actually go to sleep. Becks is the easiest. He crashes and lately has been sleeping much better. The girls are a different story. Addie gets out several times, to tell us she loves us, to go potty, to get a drink. Then she goes right to sleep. With the introduction of the big girl bed, we are working on Rae staying in bed. We put up a baby gate so she can’t leave the room. Last night she yelled for Addie to save her. She also likes to strip naked at night. So it’s a work in progress.
Usually by 9:00, it’s quieter and we get a chance to relax a little. Talk about our days, watch some shows together. Then we head to bed around 10;30 and pray that all the kids sleep fairly well so that we get some rest.
My life is chaotic. My life is messy. My kids probably watch more tv than they should. We don’t always eat healthy. I get stressed and short tempered sometimes. My house is cluttered a lot. Things get neglected. I forget a lot. And guess what?
I ABSOLUTELY LOVE IT.
I love that we are all together. No one is in the hospital. Beckett is rolling over and has become a tummy sleeper (which is terrifying with all the cords). He is laughing. My girls are BEST friends. They love each other so much and are closer than I ever thought possible. They giggle and play pretend. They get to be kids and make messes. Shawn and I get to spend time together. We aren’t trying to keep our marriage strong from two different places. We are in the same house, the same room. We are happy. We are finally feeling a break from all the massive stress and fear. We are closer than ever. As much as I wish that Beckett didn’t have to go through this, that my girls wouldn’t tell people that their brother has a broken liver, that I hadn’t had to cry and worry as much as I have, I would never NEVER trade my life now. I love our new normal.