Showing posts with label CHD. Show all posts
Showing posts with label CHD. Show all posts

Friday, January 30, 2015

Menu for Week 5 of Taking the "100 Days of Real Food" Mini Pledge (14 weeks)

Once again we have to plan at being at the hospital most of next week. I used several of the meals I made for The Elder's lunches for work. Hopefully surgery won't be canceled this week like it was last week.



Week 5: Try two new whole foods – Try a minimum of two new whole foods that you’ve never had before


I have tried many things in my time. Without going to a specialty store, I don't think I could easily find a whole food that I've never had. So, I am opting to interpret this in a different way. I think we will eat 2 whole foods that AJ or the FAMILY has never eaten. Honestly, that will be a lot easier. Although we have already tried several new things since we have started.

What are the 2 new whole foods? Eggplant and turnips. Yes, I know they are both vegetables. We tried lentils for the first time last week. Quinoa was already introduced to our diet. I am not introducing any new grains at this time because they can be costly for a family our size.

Meal plan is:

Eggplant Parmesan using homemade breadcrumbs, Pasta with sauce, and Swiss Chard.

Quinoa and Sweet Potato Enchilada Casserole and  Apple Dumpling Cinnamon Rolls. I will use coconut oil in place of the canola oil.

Chicken Stew with Turnips and Mushrooms. I may serve this with some quinoa or brown rice because The Elder is never full with "just soup".

Chicken Stir Fry over Brown Rice


Loaded Baked Potatoes - Bacon, Cheese, Salsa, Sour Cream... The difference is, I use raw bacon and bake it with the potato. Works out well. Serve broccoli on the side.

Chicken, Vegetable, and Brown Rice soup. I will use whatever vegetables come with the CSA basket this week. I know there will be Turnups, carrots, and some type of green. Plus I will add in some peas, green beans, and any other veggies I find in the freezer.

Pasties - I notice that the CSA this week is also suppose to have Rutabagas in it. There we go! A 3rd new whole food this week!  I will use butter instead of lard. I may make some with chicken too and use them for lunches or to go into the freezer. Maybe add Parsnips?

They wear pjs on Sunday bowling nights.
For lunches, we will eat some Pasties and anything else I have time to make or space to pack. Otherwise we will eat in the hospital cafeteria. Where will we keep it? We will either keep it at my parents house (20-25 minutes away) or in a one of the hospitality houses the hospital has. One we can reserve a room and the other is first come, first served with special consideration tot hose who drive further than others. We are about an hour away in good traffic, so we are low priority. The other one has rooms more often and you can reserve them. It also costs a little more a night. With both, you can only stay 5 days unless you are a NICU parent (Shirley no longer is in there) or another long term situation.

The minions will remain with Julie and eat whatever is easiest for her. We have some boxed foods (I know, I know) as well as plenty of freezer meals (ones I made). She actually specifically requested the boxed items because she always forgot to grab a freezer meal the night before or early in the day last time. Is it the best thing for the minions to eat? No. Still, this poor woman is taking care of 5 kids who are 7 and under. One is Autistic. So if she wants that to make the weeks she has here easier, then we can do that for a week.

I will still make the full sized meals above. That way we have some to take and we will have several more freezer meals to add to our stash. Who knows, maybe Julie will want to try one.

Tuesday, January 27, 2015

How it's going - Week 4 of Taking the "100 Days of Real Food" Mini Pledge (14 weeks)





Tokyo on the "computer bag".

It's only Tuesday and it's already been a unique week. I have to admit that I ate fast food (Jimmy John's) yesterday for lunch. No chips. I had tea to drink. I have no clue what sandwich I ate. I know it had mustard and some sort of meat and veg.

The Elder holding a fussy Shirley.
 We took Shirley in for her pre op testing yesterday. We had her xray done, they took vitals, I let them know she had an on and off stuffy nose. The nurse looked at her and said it was fine. The then sent in one of the surgeons who will be working on her heart. He went through things and then asked about if she was sick, cough, runny nose, fever... I told him she had an on and off runny nose (not bad) and then a green bugger popped out of her nose. That is not what we had been seeing prior, but it was there. That green little booger is what stalled her surgery. Since the surgery can wait a little bit if needed, they felt it was better to wait. If Shirley was put on a ventilator and she had a cold, it could become much worse. Not something you need when recovering from open heart surgery. Especially when you are just shy of 2 months old. Surgery has been rescheduled for next week.


Colonel Sanders moved her chair into her brothers' room.
 Once again we were caught off guard. What are we going to do? It's not easy for us to find care for the minions. Luckily Julie was able to change out her vacation days for the days needed next week (now minus one day).

We put a plea out to our friends and family for some help with week 2 of Shirley's stay. If I don't have to, I don't want to have to come home every night, stay till I can get the boys to school and come back home when they get out of school. We have had some friends come to our aid. Right now we are trying to piece that all together since some people can only do a few hours, some can only take 2, some 1, some can do an over night for one night. The Elder and I are very grateful. We are shooting for a back up plan of staying in the hospitality house the second week of our stay. Only because they can house all 7 of us. The school has agreed to make an exception for missed school and send homework home if it comes down to it. That will be last resort.


Add caption


 I did get several meals made for the trip. My Easy Lunchboxes lunch bag kept everything cold and it was still frozen solid when we arrived home. So I put it all (4 meals) in the freezer for next week.

Keeping our fingers crossed that the sniffles go away. I am not sure Julie's boss will be so understanding and nice if they have to reschedule it again.


Add caption
 Since my food budget was already used this week, I didn't want to buy more food. At the same time, I didn't want to use what I had because a lot of thought went into kinda healthy (and some not) food for the minions while we were gone. Luckily I have my CSA and the freezer meals still. Yes, I like to cook (some day's its a chore) and even while "resting" I would cook a few meals a week. So that is what is saving us this week.

Tonight we had Chicken Parmesan and CSA Kale.

The other meals will be

 Lentil "Loaf", Spaghetti Squash Au Gratin.  and Spinach

My local chicken for the week is a Whole chicken. So I will bake it and have CSA Squash with Baked Apples.



Chicken, CSA Carrot, Parsnip, and Veggie Noodle Soup. I will use the chicken carcass to make the broth.

Stuffed Pork Rolls (freezer meal) with Mashed Potatoes, and Carrots and Parsnips (CSA)

White Lasagna with Broccoli
Add caption

I suppose I should start thinking about next week... Try 2 whole foods I haven't had before. Umm... This shall be interesting. Since joining the CSA I have had food I have not had before. Swiss Chard and Celery Root. I never had Rainbow Lentils before. I picked those up at Sam's Club 2 weeks back. Coconut Oil. And there are a few others.  Looks like I will need to be looking for something that's easy to travel with.


I will have to think about that. I will be shopping Friday this week. I expect I should have meals figured out by then. I will also post what is in the containers below for dinners at the hospital for next week... Hopefully.





Oh Miss Shirley, No more ucky nose!


Tuesday, December 30, 2014

Our newest minion. Meet Shirley.


Behaving just long enough to take the picture. Chaos ensued. 


This picture from the last OB appt before Shirley was born. Yes, all 5 had to go with me. Finding a sitter is not as easy during the day. There is no way I will pay $50+ to send 5 to a daycare for 2 hours. Nope. Not happening.



As you can see, Shirley was born pink. A few hours after the Csection (interesting one) we went to our room. The Pedi came to do the newborn screening as we were calling Aunt Julie to bring the minions to the hospital. The kids literally made it to the parking lot when the nurse came in and told us that she needed us to wait. The Dr. needed to talk to us. Shirley would need to stay in the nursery.

The Dr. detected a heart murmur. She felt because nothing was detected on any ultrasound that it was most likely a PDA. I can handle a PDA. Clark had one when he was born. They gave him some medicine and it helped it close. Not a huge deal. Still, our hospital did not have the equipment needed to do further testing. The decision was made that she would be taken to the closest NICU. It was an hour away and happened to be the one Clark was in. The only hitch was, I had just had a Csection with a tubal ligation. They do NOT bring the mother with the baby.  So I remained and started begging my OB to release me so I could be with my daughter.
Shirley getting ready to leave with the transport unit.

I sent The Elder to be with her. Pa took him for support. The nurse with the transport unit felt it was more than a PDA. So they left with Shirley and my OB came back in to talk to me. She was really nice and made a deal with me. This was far from my first Csection. I already knew what not to do and danger signs. So, as long as I could pee enough on my own, as long as I could keep down food, and as long as I could make a full lap around the halls, she would release me the next day.

Testing was finished at about 10pm. The Elder had the Pediatric Cardiologist call me. Sadly, I had the beginnings of a spinal headache. I could barely follow what was going on. The Elder opted to come back to me that night (I told him to stay there with our daughter).


Dr. Chris drew this for me


This is what came back with The Elder. Dr. Chris (Shirley's Pediatric Cardiologist) had been nice enough to draw this picture for me. By this time, it was about 11:30pm. My nurse had made arrangements for the anesthesiologist to see me first thing in the morning to see about a blood patch. I was warned that they may not release me even though I was doing what they asked of me. Mainly because while I could do it all, it was clearly a struggle due to the pain in my head.

Shirley has Tetralogy of Fallot. There is a hole between her ventricles. In addition to that, the valve where the blood goes from the heart to the lungs is tight. It moves enough to let some blood through, but not enough for her to have 100% oxygen saturation. She was hanging out between 75-85%. This is why her nose was a purple color.

Shirley in NICU
My OB did end up releasing me about 30 hours after my Csection. She pretty much asked me was I sure. She knew I was struggling to do things, but she was my OB with Clara (Glow Stick). She knew how stubborn I can be. I was sure and I was released to go be with the youngest Minion.

I know she was the easiest baby in all of NICU. Walking into the nursery she was in (#11. Not a small NICU) brought back memories of Clark's 73 day stay. By then Shirley was keeping her oxygen saturation at around 89%. Her stay was extremely short. She only needed to stay for 3 days. She is on medicine to help the valve move. We have weekly visits to check her saturation levels (steady at 85-89%).


Thinking about stuff and things. 3 weeks old.

What does this all mean for us? We are lucky and we know it. We cannot let her cry a lot or she could turn blue. We have a baby that turns a dusky purple at times. LOTS of hand washing and sanitizer in the house. If she gets ill, we have to take her to be seen right away. Meds every 6 hours and she will have surgery between 3-6 months of age. They will replace the valve and repair the hole in her heart. She may never be able to do most sports, but that is ok. We will just have to wait and see how that goes. At some point she will need another surgery before she is an adult.

The goal now is for her to grow as big as she can before surgery. Either way, it needs to be done before she becomes  active. Shirley is now a month old and doing well. :-)
The Minions