Sunday, May 8, 2011

Not Knowing

I started off motherhood with the attitude that I would NOT be one of those moms that takes her child in for every little sniffle. But then, I quickly learned it isn't so easy to know when to take your child in or not.

When my first was 2wks old, and I took her for her first well-child visit, the pediatrician got a very concerned look on his face and said, "she's very yellow!" I looked at him approvingly, proud that she'd inherited her father's Italian olive-colored skin. I think he could tell I wasn't understanding. He told me, "This means she is very jaundiced!" I'd heard the term before and then realized what a mistake I'd made. I hadn't even been worried about the yellow-coloring!

I think this is where I really started to begin to question myself as to when to take my kids in to the doctor or just carry on with life. When she was a little over a year, she got a cold. Just a "little sniffle." I didn't bother too much about it, other than to keep the kleenex handy and keep her nose as clean as possible. A few weeks went by. I was still wiping her nose. The first little while was mostly clear, and I even wondered if it was just allergies. Another thing she likely inherited from her dad. So I kept wiping her nose. After a while, it got a little more yellow, then green. Finally I decided to take her in.

The doctor did the typical check-up, then began to take some of the mucous from her nose. He was a little surprised. He got what looked like a pair of long tweezers. He grabbed the end of the mucous dripping from her nose, quite thick by this time. He pulled. And kept pulling. He was just absolutely stunned to silence, it seemed. When he finally said something, he said he had never seen anything like this! He then asked, "Have we talked about Cystic Fibrosis before?" That was the first time I had every heard about that.

He told me he was going to send us for some tests, including a sweat chloride test. And we were to see the ENT, making sure the specialist knew he had been pulling "thick - viscous - pencil-length, rope-like discharge" from her nose, rope, after rope, after rope. I had never heard the word "viscous" before either.

She didn't have cystic fibrosis, and after an adenoid-ectomy things seemed back to normal. Shortly after the surgery, she was sitting on a folding chair, playing the piano, and lost her balance. She fell, just that short distance to the floor. She cried, but then was okay. Except she wasn't using her arm and she'd cry when I'd put her coat on (she was usually very even tempered and really didn't get worked up about much, especially putting a coat on). I noticed her wrist and arm seemed a little more swollen than the other. So I called the doctor's office. I explained what happened. Based on her age, they told me it was probably a little sprain. I asked if I should bring her in for xrays to make sure, but was told she was too young to break her arm, and especially from such a low height, it was just sprained. So I waited a few days, still feeling something was wrong but not wanting to take her in "for a little sprain." But I finally just felt I needed to. They did the xray, mainly to give me reassurance. Then they saw that both of the bones in her arm were actually broken (they told me the scientific names of the bones, but I honestly don't remember now.) I started crying. The doctor reassured me that it was okay, but I felt horrible I had waited so long to take her in. He explained they would have had to wait the few days anyway for swelling to go down before they casted it, so I didn't do anything wrong to wait to bring her in, but I felt awful anyway. Supposedly, having been diligent about giving her fluoride from six weeks of age, her bones were more brittle and that is why even though she was so young and fell from such a low height, this could happen.

So much for being sure about when to take your child in!

I could go on and on. Our 2nd child, our first son, was quite ill and went through a lot. I read back on some of my journals when I was quite concerned I would lose him, even though there wasn't anything critical going on. Our 3rd child was born premature, emergency c-section and had to be resuscitated at birth due to prolapsed cord - no trace on the monitor and no pulse in the cord for minutes before birth. She didn't grow well, and there were just a lot of concerns with her as well. I felt lucky because we had our miracle to have her here.

Dominic's life was short. And I spent most of his life in and out of the doctor's office, doing all I could to help him grow and develop more appropriately. Though he was struggling, his crisis event was still such a shock! The doctor's office had even sent me home with a little paper with an "A+" on it just a few weeks before that, and he'd been seen in office on Sunday, Monday, and Thursday before his ALTE on Saturday.

Bridget's life was even shorter. I didn't spend as much time in the doctor's office, but she started off with 10 days in the NICU. And we had a few visits to the clinic before her crisis event. One of those visits was after a week from the previous one, and she had gained no weight. The entire week she hadn't gained anything, but hadn't lost either. The doctor was concerned. He thought it would be okay to wait a few days and try adding more formula to my expressed milk, then go back in. So three days later, we checked and her weight gain was ample. So he felt we could give it a month before going back in. I made the appointment - Friday, September 7th, 2007. But on Aug. 15th I was so worried about her, and wondered if her weight gain was sufficient. I called and they told me I could just do a weight check for reassurance. She weighed-in, and they felt it was a slow gain, but still sufficient, so just keep the appointment in September. We had a home health nurse coming out through a program for preemies, and she'd come out for weight checks once a week. I thought I was just getting nervous because of what we'd been through with Dominic. At that appointment, though, things had really started to add up to a pile of anxiety and concern. I had a list of things and went over it all, and after about an hour with the doctor, left feeling like I was just being a paranoid mom with heightened concern due to the anniversary of my son's crisis event and death coming up.

I didn't want to be the mom who took my kids in for every sniffle.

I have, more and more, began to second-guess myself. It's weird, because since those concerns I had with Bridget should not have been discounted, I still worry that I'm making too much out of things that aren't really a problem. I've been trying to seek reassurance that my other kids are okay because I don't want to lose any more, but I also worry that I'm in a sort of denial that my kids may really need some help. I felt that way on Sat. Sept. 8th 2007. Bridget HAD to be fine, and I was just imagining it was happening again. But I also KNEW and could even SEE something was terribly terribly wrong.

Death of one child (and in our case two) just makes it hard to separate out the grief and fear from what is real, especially if cause of death is thought to be genetic.

How do you know if your other children are really affected by something concerning, or if it's just your head and heart being confused by how hurt it is and from how afraid it is of having it happen again?

Not even 9 months after Bridget died, our youngest was born and she was 7 wks early. I went into the hospital a week before with a placental abruption, so I had spent the week in the hospital getting ready for an early arrival. It was good that she did as well as she did after birth, having gotten two doses of shots to mature her lungs.

The NICU sent out a newsletter for a while after she was born. In one of the issues, it talked about Vulnerable Child Syndrome. It's where we have gone through something traumatic, like almost losing the child or previous losses, or both, and so we are hyper-reactive to things going wrong with that child (who survived) or to subsequent or other living kids. I read that and started to wonder about our youngest, who was in and out of the hospital at that point, suspected to have the same condition that Dominic and Bridget died from, but they couldn't find an answer for sure. We have had so many losses - 3 miscarriages and the death of two children. We had the close call with our 3rd. We had three NICU experiences. So we have the history where this could really shape how we view things. And I don't want my kids to be subjected to unnecessary medical tests/procedures/visits just because of that.

It sits in the back of my mind, like maybe I'm doing TOO much medically with our kids now because their siblings died, but maybe there really isn't a similar issue with them that I need to worry about. Then on the flip side, I was TOTALLY convinced BEFORE Dominic and Bridget had their crisis event that something was happening with them that was more urgent than what the doctors were seeing. I literally begged and pleaded with the doctor to see what was happening with Bridget and not just discount me as being paranoid because of the things that happened with Dominic and his anniversary coming up. So, I am not sure why I am so absolutely lacking confidence in knowing what to do, how much or how little, medically for other kids.

I don't know that anyone could read these long posts. I mostly write it out to help me remember what I'm thinking about with this journey to find answers. But I do hope if anyone has taken the time to read, they could offer insights. I am just wanting someone else to take my feet and plant them firmly in reality. How concerned should I be about my kids who are struggling? How much should I do to try to figure it out? How far do we go to find specialists who are more educated and experienced with the world of undiagnosed/rare and what they think is either mitochondrial or metabolic, but almost definitely genetic?

I have had increasing concern about our youngest son. And after having a few months of not being as high-alert with our youngest, I'm having more and more concerns - some things that are just changing with her and somethings that are the same but seeming to get worse. And yet, I read about so many kids who are sick. Really REALLY sick. I don't want my kids to be one of those kids. And I don't want my kids to be sick with whatever it is that took Dominic and Bridget. I don't want that to take anymore of my kids. But if there is something going on that we should address, it doesn't help them to ignore what is there. I just also don't want to imagine something is there when it is not.

It's been a struggle for me. I hope to find clear direction with all this. We have a lot of appointments coming up through the next couple of months, so maybe that will help. But somehow, I also have to find a way to know when to make appointments, or not. When to keep looking for answers, or to stop...

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