Funny Girl Moments

The other day we were at the pool and Nathalie said, "I'm watching a movie in my head.....Does that count as media time?"

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On the way home from swimming, Nathalie asked, "Mom, how are hot dogs made?"

I responded, "Do you really want to know?" She said, "Yes."

So I explained kind of how hot dogs are made. She looked at me and said, "Well, if that's how hot dogs are made, then what are those things growing in marshes?"

(She was referring to cattails. I busted up laughing at that one!!)


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At a parent-teacher conference this last year, Nathalie's teacher asked, "So....Nathalie says her dad helps people die.........."

(Matt is working as a hospice nurse.)

She and I had a good laugh about that when I explained it!


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Charlotte brought a broken ornament to me today.   "Mom, this broke! I was going to put it on my pony on the farm!"

I asked, "What farm? What pony?"

Char replied, "Our farm that we're going to have someday. I'm going to have a pony named Midnight and I wanted this ornament to hang on the saddle."

August, third month

August, Second month

August, First Month

Heavy Stuff

So. I last posted on April 18, which makes the last 6 weeks the longest time I've gone without blogging. I'll tell you why.

Let's go back to last year, all the way back to March 2015. The day in March when Matt withdrew from his Women's Health course because he wasn't going to pass. He'd already done 1/2 his clinical hours but had failed both exams of the year and knew that he needed to withdraw. So he did, and we cried. So much effort and time, and it was all going to be delayed by a year. He talked with the dean of the program and we waited the next 9 months to take the class again. During those 9 months he did everything she asked, including but not limited to: rereading his entire OBGYN textbook, redoing a whole semester of clinical hours, finding a certain type of job, etc.

Fast forward to January 2016. He starts his Women's Health course again. Same professor as last year. He gets an awesome grade on the first exam, not awesome on the second, a medium grade on the third, and is doing pretty well on his homework. He's borderline passing (pass grade is 80% or above). He is acing his clinical course and completes his clinical exams and patients love him. It was a tough semester because his clinical rotation was 2 hours away, three days a week. I had to fly solo with a newborn and we ate a lot of cereal.

He went into the final exam needing to get a certain grade in order to pass the class. The grade was high but not un attainable.  He studied 40+ hours for the exam, which wasn't a comprehensive exam, just a unit exam.

He didn't get the grade he needed and failed the class. 4 (of the 18) other students from his cohort also failed.

Technically, he could take the class a third time.  But honestly he doesn't want to. The teacher doesn't like him and didn't want him to come back even this time. Georgia Southern hasn't been a great experience, and they will continue to charge him out of state tuition as they have for the past 3 years. So while that is an option, that's not a great option.

So then what? 31 graduate credits, a huge amount of school debt, no degree, no graduation and transferring schools loses him 60% of the credits.

Just like that, our five-year-plan vanished. Our ten-year-plan crumbled. We put all our eggs into this basket and then eggs turned to lead. Then the basket was thrown into the ocean and we were chained to it.

So that's why I haven't written. It has been a really hard month. We've had sleepless nights, no appetite, lots of tears and worries and frustrated words as we try to wrap our head around what this means for our family financially, physically, and emotionally. I could write pages and pages about all the thoughts and feelings we've had, but none of that will change the fact that the light at the end of the tunnel was extinguished.

It all feels horribly unfair. We are sad, hurt, angry-- so many negative emotions. So much worry. So much planning on how to handle this financially as we try to raise our children and pay off the huge debt at the same time. So many questions and frustrations poured out in prayer to a Father that I know is there, but I don't know why He let this happen. So many tears as I have grieved the loss of some of our dreams and pondered the hardships that will come our way. So much anger as I have railed against the school for the questionable behavior it has shown. We've tried to keep it positive for the girls (who don't really understand) but when they are asleep and the house is quiet, the fears grow large.

Anyway, that's why I haven't blogged. 

Blood Clot, Revisited

Remember when I got a blood clot in my leg in November? Well, when August turned about 8 weeks old, it was time to revisit the issue. From November to the beginning of April I was on blood thinner shots, twice a day.

In early April I met again with my hematologist. He drew a lot of blood and scheduled me for an ultrasound of my leg. Well, the ultrasound showed that the blood clot was greatly reduced...but there was still some there. When I met with my hematologist again, he told me that not only was my blood clot still there a little bit, but I was also heterozygous for a clotting disorder.

In other words, there are two genes responsible for the full fledged disorder. One of the genes was "on" but the other was "off". Which means that I am 30% more likely to get a blood clot than the normal population, but I don't have the full fledged clotting disorder. So a little bad news, but also some relief too.

Anyway, he put me on Coumadin, which is a pill. Yay for no more shots! Yay for not fighting my insurance! The shots were about $3000 a month, and so I had to fight my insurance company every month because they would continually deny the prescription--but the shots were safe for pregnancy. The shots are safe for breastfeeding too, but the pill is too, so now I'm on the blood thinning pill.

Having just a pill is nice. But there are some caveats. This particular medication is very tempermental. I have to go to a medication clinic twice a week to have my coagulation levels tested-- they don't want my blood too "thick" or "thin". It interacts with other medications, so any time I take any other medication, I have to let the pharmacist at the clinic know. Also, if I get sick and my food intake drops, or I go on a diet, I have to let the clinic know. If I eat too much of a food containing Vitamin K (which thicken blood) or too many cranberries or cherries (which thin blood), I have to let them know. To drive in to the clinic takes 30-45 minutes, depending on traffic. I'm in and out in about 20 minutes, but I still have to be monitored twice a week to make sure my clotting levels are normal.

Very frustrating and frankly, it's a big stress with Matt in school and five children. But it is what it is and so hopefully the rest of my blood clot will resolves quickly. I will have to take a baby aspirin the rest of my life, which seems like a dream after these last two medications!

First hospital visit for Lydia

Well, we had made it almost 3 years without a hospital visit for Lydia. But in mid-January, she was on the verge of a metabolic crisis and we had to take her in. She woke up in the morning and had a fever and then threw up. Since she hadn't eaten since dinner the night before, we were immediately on high alert because she was already pushing the time limit, without the added factor of throwing up. We gave her two hours and during those two hours we tried to get her to eat popsicles, fruit snacks, applesauce, chocolate chips-- ANYTHING to keep her from going to the hospital. But she refused to eat and threw up two more times at the end of the two hours. She was starting to fade and so I jumped into the car with her and Matt stayed home to hold down the fort.

Besides the vomiting and refusal to eat, I could tell that she was borderline crisis because she refused to walk, was lethargic and cranky, and was very tired. I ended up carrying her into the ER (I was 35 weeks pregnant) because she couldn't/wouldn't walk. Knowing that we were under some serious time limits, I showed the ER clerk her emergency protocol letter right when I registered her. It only took about 10 minutes in the main ER waiting room before they called her back to triage. Back in triage I showed her emergency protocol letter again, and they immediately moved us to the Pediatric ER.

Her emergency protocol letter basically tells the hospital staff exactly what to do-- what her IV bag is supposed to be full of (D10) and the rate at which is pumped into her (1.5x the normal rate). It also gives specifics on how she isn't supposed to wait EVER for care, how checking her blood sugar is not a reliable method of determining whether or not she is in a crisis because hypoglycemia is a late indicator and how she needs to be treated immediately. It is a very, very important piece of paper to us-- so much so that we have one in each car, one in an "important documents" location, one in my diaper bag plus I carry around a USB drive with a digital copy.

When we got back into the Pediatric ER, no one had told them about or shown them our protocol letter. After 20 minutes of waiting where Lydia was becoming even more somnolent, I approached the nurse's station asking if they knew she had a metabolic disorder and if they'd seen her letter. They said they didn't know and hadn't seen her letter. I didn't know where the letter was at this point, but I had my USB drive with me so I handed it to them. They said they would check it and to go sit back down.

Also on the USB drive was all of her most recent lab work, immunization record, her geneticist's contact information (I also keep the geneticist's business card with me), her most recent records from her regular pediatrician and anything else I think is pertinent.

1 minute later they said they were prepping a room for us! That's what the protocol letter does. If we'd had to wait the normal wait time of an hour or two, Lydia could have started seizing or become comatose. The letter guarantees immediate action which can save her life. The charge nurse later praised me for the USB drive because she said that it was amazing to have all of Lydia's medical information available immediately.

So they took Lydia back, started an IV and the doctor came in. He was kind of laissez-faire about the whole thing, saying things like, "Well, we'll start D10 when we get a hold of the geneticist" (they were just giving her saline) and "she looks okay, just tired". Knowing how quickly she can decompensate, I suggested he read the protocol letter and also verbally outlined the steps her geneticist would want him to take. To his credit, he listened to me and started the IV with the D10 running right away. Good thing too, because he didn't get a hold of the geneticist for 2 hours and Lydia would have been in serious trouble by then.

She perked up quickly with the D10, but the problem with the stomach flu is that in order for her to not go into a crisis again, she has to be consuming enough calories on her own. She ate a popsicle but refused everything else, so they admitted her.

The next 30 hours were pretty boring-- we were just playing the waiting game of seeing when she would start eating enough on her own. Because MCADD is a rare disorder (1 in 15,000 in the US) we had a lot of visitors who wanted to know about MCADD. All of the residents came to ask, most of the med students and we even explained some to the doctor on call. He knew what it was but had never had a patient with MCADD before and was surprised how quickly she perked up with the D10.

Lydia did okay. She was pretty emotional and absolutely hated the IV (which she called a her "sharpy"). She basically pretended her hand with the IV just didn't exist, which Matt said was really normal for children. Matt and I switched off (he stayed with Lydia during the night so that the hugely pregnant lady could sleep in her own bed) and the other girls were really worried and sad about Lydia. She cried when I left, she cried when Matt left, she cried when her sisters left, they cried when they left, they cried the first night when she didn't come home-- it was really tough.

The next night, she was almost cleared to go home when she threw up again. We were SO disappointed! However, Matt was able to convince the staff that we could handle it from her on out, since she hadn't thrown up the whole day (except for the early morning). He convinced them to discharge her so she could continue recovering at home. I think they probably would have said no to other parents, but we were so knowledgeable about MCADD and Lydia was acting normal again and had no fever, as well as the staff knowing that Matt is an RN, helped convince them we could manage it at home. So we only had to stay in the hospital for one night, which was SUCH a relief, especially since I was back in the hospital 2 weeks later with Auggie.

I just have to say that the hospital staff was so great. They listened to me and followed my instructions when they couldn't get a hold of her geneticist. They were gentle and happy around her, they brought her toys and books to play with, they made her smile and acted very quickly.

What a relief! I was so worried about her first hospital stay but all my worries were unfounded. We were grateful for how it all played out and that Lydia recovered so quickly.