Wednesday, September 28, 2011

Nephrology Appt

Well, we get to the nephrologist yesterday and Gavin's blood pressure was totally normal! Not that we are complaining, believe me. But he said that due to his risk factors, we might as well get everything checked out. That way we know (for now anyway) that everything is good. He also suggested a low sodium diet - which I will start tracking Gavin's food, but I believe he is not getting more than 2500 mg of sodium a day. I track what I eat and I rarely go over that (especially considering that Livestrong only has around 1600 mg for the recommended amount). One of the things that is out is Gatorade and sports drinks, which he was bummed about, but I think we will know if he can have these things on occasion once we start tracking his food and seeing how much he is really getting.

He's also not supposed to have any caffeine. So we will have to check labels, because there are some soda's like Sunkist Orange that you would think are ok that actually contain caffeine.

Before we left the office, he peed in a cup, and we were on our merry way to tour the hospital. First up was an echocardiagram, kind of an ultrasound of the heart. We had to go from the west side of the hospital over to the ER where the outpatient registration was. Once we checked in we had to go to "the farthest part of the hospital we could send you" according to the registrar to get the echo done. We got over there, and got in fairly quickly. He took his shirt off and they put the leads on him to measure his heart rate. I wasn't prepared for seeing those little sticky pads on his body and the wires coming from him - the size of the leads would have covered most of his abdomen when he was a baby. It was surreal how it sort of transported me back to the NICU.

Gavin tried to stay still and not talk as she did the echo. Unfortunately, I have no idea what I am looking for, and the tech didn't give any indication.

Then we went all the way back to where we originally started, the path lab in the same wing as the doctors office. Gavin was very nervous about the blood draw and even squealing with they tied on the rubber band. Clearly this boy is no longer desensitized from all his poking the first couple years of his life! He started crying when they used the alcohol wipe and I had to remind him that wasn't even the needle yet. (Gavin is a bit of a showboater, so I'm not sure how much this actually hurt vs he wanted the attention of it hurting). He squeezed my hand and we had to remind him the importance of keeping still. As the needle went in, he got in the poor lab tech's face and screamed "OWWWWWWWWWWWW" at the top of his lungs at her. He whimpered until it was done, and then he was just fine.

We then embarked on our mad rush to get Sam, get home, get snacks, and get dressed and to his soccer game. Where he did an amazing job and had several great assists and some good goals. It is so fun watching him evolve in this sport. I snapped some action shots which you will likely be seeing on here some time in, oh, November or so.

Friday, September 23, 2011


Thanks to Amanda for posting this quote on Facebook this morning!

You did then what you knew how to do, and when you knew better, you did better
~ Maya Angelou

This applies so well to parenting. Your kid doesn't come with an instruction manual, although there are so many parenting books written, you couldn't possibly figure out which one to follow. My mom said it best in my post about kindergarten - you make the best decisions you can at the time, with the information that you have, when done with love, that's the best that you can do.

It's also a great reminder that every day, every experience, presents an opportunity to learn more, to overcome another challenge, and to use that experience to better inform your decisions in the future.

So while we should never lament the decisions we've made, we should also be vigilant to always do better when we have the chance.

In other news, Gavin's blood pressure was down a lot today. Lower than any recorded measurement in 4 years. I am really glad it's down, but it's a little frustrating that this measurement is down at the 11th hour. It makes me want to hook him up to a machine 24/7! I know I just need to be patient and wait for the Dr. visit....but it's kind of like when their fever is 104 at home and fine by the time you get to the Dr's office - even though you had valid reason for concern, you feel a little silly when they stop acting sick the minute you get the office.

Monday, September 19, 2011

Sam's a Big Brother

No! Before you get all worked up, we are NOT having another baby. Unless Sam knows something we don't. Ha! No, he doesn't. I repeat, we are NOT having a baby.


This weekend Sam informed me, "I'm going to be a big brother!"

I said, "Really - YOU are going to be a big brother?"

Sam, "Yes, I AM!!!"

When I told Chad he said "just wait until he tells everyone at day care"

So in case Sam shares this tidbit of information with you, it is all fiction. He later told me that his friend Calvin at school was a big brother, so I think he just decided that he was going to be one too.

He's still pretty flippin' cute, even if he is spreading lies

Saturday, September 17, 2011

Friday, September 16, 2011


From Wikipedia:
A nephrologist is a physician who has been trained in the diagnosis and management of kidney disease, by regulating blood pressure, regulating electrolytes, balancing fluids in the body, and administering dialysis. Nephrologists treat many different kidney disorders including acid-base disorders, electrolyte disorders, nephrolithiasis (kidney stones), hypertension (high blood pressure), acute kidney disease and end-stage renal disease. Nephrology is a subspecialty of internal medicine. In the United States, after medical school nephrologists complete a three year residency in internal medicine followed by a two year (or longer) fellowship in nephrology.

While many micro-preemies get released from the NICU with a list of specialists, we were part of the lucky few that didn't. No pulmonologist, cardiologist, no issues that couldn't be addressed by our pediatrician.

Until now. In two months and 1 day we will celebrate 7 years outside the NICU. Oddly enough, 7 years ago today Gavin was recovering from a blood borne staph infection, fighting to get off the vent, and being administered doses of a medication that could have impacted his kidneys (but that was completely necessary to help his heart and avoid surgery).

Gavin's blood pressure checks have continued to run high at school. We have officially been referred to nephrology. It's hitting me really hard. I don't know why. We've been extremely lucky with Gavin's health and avoiding many long term issues that accompany being born 3 months too early.

I guess maybe I'd thought we were safe. That there was nothing else that could touch us. I'd let my guard down, started seeing him as a normal kid, didn't really worry about lifelong issues anymore. I feel blindsided. And I'm mad at myself for not being on top of the blood pressure readings, and not knowing that they were high in the past, and not knowing that preemies were at risk for high blood pressure. Preemie mom guilt is a nasty beast to shoulder. And it's hitting me pretty hard today. I'm not usually much of a crier - but it's rainy and gloomy out and I catch myself tearing up frequently.

I know it's probably nothing. And I know if it's something - even a big something, we'll get through it like we've gotten through everything.

But for today I'll wallow. And take the afternoon off for some shopping therapy. That always seems to help.

Thursday, September 15, 2011

4th of July Race Pics

 There's my big kid, not too far behind a much bigger kid. Go Gavin!
 Such determination!

 Little brother needs a pep talk before his big race
 And he's off! Gavin stayed an appropriate distance behind him, cheering him on

 Sam's showing off his perfect Pose running form.
Mommy also ran the 5k that morning. But the pictures weren't pretty!

Monday, September 12, 2011

When Should Preemies Start Kindergarten?

As Gavin gets older, I find there are less and less resources to answer my preemie related questions. I love, love, LOVE the online board that I joined when Sam was born, and they have been so helpful in answering my questions and saving my sanity. However, Gavin is one of the older kids of the group - at least of those of us active on the board.

I received a comment on his birthday post about the decision to send him to school, rather than waiting. I thought it might be helpful to post my response on here as well, in case any other mom struggling with this decision is trying to find parents who have been in the same position. This is just what worked for us and the decision that we made based on the research that we did. Everyone needs to evaluate what will work best for them, of course.

To aid in my decision, I read a lot about pro's/cons of sending kids to kindergarten. It was not preemie specific, more about kids that are on the brink of that cut off date.

Everything that I read said that any disadvantage that they may have being young for their grade is pretty much eradicated by 2nd grade. Gavin did not attend the school district preschool (being our first kid in school and not having friends with kids that age, we didn't know how important this was). He had preschool type time at his day care, but probably not as rigorous as real preschool.

At any rate, I can see that the gap has closed big time between kindergarten and now. The neighbor girl was reading before she even started kindergarten and was way ahead and bored in school the last two years. I just talked to her mom last week, and she's not as far ahead as she used to be, and it's frustrating her (the child). Like the spelling list they sent home, she didn't know them all right away and had to study.

I also found it interesting that when I went to administer spelling tests last week, there was a boy in my "red list" group. The red list was easier than the green list (Gavin made the green list). This boy was in his class in kindergarten, and he was in the advanced group at that time - and this year he has the easy spelling list. So things are starting to even out, it appears.

Gavin's super smart, his issues were more non-academic that interfered with his abilities to perform (I believe). The first half of the year in Kindergarten he literally could not sit still during carpet time. Last year, he was having problems following through on directions and with reading comprehension - which doesn't just hurt language arts scores, but also math, science and everything else if you are not properly comprehending the instructions.

Would these have been any better had we waited a year to send him? I'm not sure they would be. I think he needed to be in that structured setting to be able to work on these skills, so I'm not sure holding him back a year would have really helped much. The key for me is taking the time to get to know the teacher, and to make sure they understand the history. I expressed my concerns up front with the teachers, told them some of the issues we saw at home, or from the prior year at school and regularly emailed/checked in with the teacher to see how things were going and what suggestions they had for us to work on things at home. That way they see you as the partner and (I think) work a little harder with your kid. I also volunteered in his classroom which kept me in touch with what they were working on as well as gave me perspective as to how the other kids were performing on assessments.

So in hindsight, I do believe we made the right decision, although I've questioned it every time he struggles (and likely will continue to!). In the research that I did, there is cause to hold them back if you think they are not socially/emotionally ready - they need to be able to use the bathroom, follow directions, communicate, get along with other kids, etc. 

The other reason I've heard anecdotally - I get this from parents of boys more often than I thought I would - is that they wouldn't send their boys that are young for their grade because they will be smaller and not as good at sports. While it seems superficial on the surface, I do think this could have confidence and social ramifications (and could certainly be more relevant in preemies that have still not caught up in terms of growth, but would have to weigh whether they ever will be).

Gavin was tall for his age by the time he started school, so I was never worried about his size. I never figured he would be a football player, so I wasn't worried about that either. All the local sports clubs (soccer, baseball, etc) go by age, not grade, so he is playing on teams with kids a grade younger. By the time he gets to high school and competing at a grade level rather than age level, I don't think that 1 yr will make a difference. He'll either be competitive or not at that point.

That's my two cents. If you happened upon this post because you are struggling with the decision yourself, best of luck!

Thursday, September 8, 2011

Gavin's 7 Year Check Up

Gavin's stats came in at 50 inches and 59 lbs. I'm skeptical of the weight as he is usually 55 lbs at home. And if our scale at home is 4 lbs off, in the wrong direction, I'm not a happy camper!

At any rate, he grew 2 1/2 inches in the last year, and added 7 pounds. Last year he was 77% for height and 79% for weight. Now he is 81% for both! At this point he's estimated to grow another 2 ft, so he'll be almost as tall as his dad.

We had one measurement that was concerning - his blood pressure. I don't remember the bottom number as it wasn't concerning, but the top number measured 124 and then 120 the next two times they took it. For his age/height the top of the range is about 114. And being at the top of the range in and of itself is concerning, exceeding it is not so good. We are hoping it is just "white coat hypertension". The school nurse will be checking it weekly for us to get his trendline, and we're hoping it is down when she checks it today.

It's likely just nervousness at being at the Dr. He asked me on our way there if they were going to burn his hands. This kid remembers everything. When he was 2-3 yrs old, he had warts on his hands, and our ped dry iced them. To no avail. After several visits we weren't putting him through that again. I don't remember how we ended up at a dermatologist, but he ended up getting immunotherapy done there. It worked WONDERS and the only side effect was some itchy spots where they put the treatment to trigger the immune response.

sidebar: if you/your kids suffer from warts do not put them through the painful and scary process of having them burned off! See a dermatologist for immunotherapy.

At any rate, the blood pressure is probably nothing, but I always like to know what the worst possible scenario is. In kids like Gavin who do not have primary, or "lifestyle" risk factors - stress, smoking, overweight, bad nutrition, etc - it's more likely a kidney or heart issue.

As soon as I hear kidney, I am taken back to the medical interventions in the NICU. While all absolutely necessary to save his life, it's a harsh reminder that one simply can't be born 3 months early, go through months of medical intervention and come out unscathed. Everything has a side effect, has a flip side. So even if his blood pressure turns out to be unconcerning, this experience is just a sad reminder for me. Just when I so boldy declared we were over prematurity right?

Most early-ish preemies are born with a PDA, which is basically a valve that is open due to the way the blood is oxygenated in the womb, and normally closes within 72 hours of birth. Being born more than 8 weeks early increases the risk that it will not close on it's own, leading to major issues. They attempt to close it will a medicine called indomethacin, or "Indocin" which helps in the valve closing. Oddly enough, I was also on this drug from 17 weeks to 26 weeks pregnant to reduce amniotic fluid. A side effect of the drug is that it can decrease bloodflow to the brain, gut, and kidneys. So they were watching Gavin's urine output closely while he was on the drug. At our hospital, they routinely administer 3 doses of Indocin to try to close the valve, if that does not work, then surgery is the next option.

Gavin's urine output slowed significantly after 2 doses of the medication - indicating harm to the kidneys, they did not give the final dose. We were fortunate that his valve closed with just two doses. But today, I get to wonder what the price was. Don't get me wrong, I would never elect surgery on a sub-2 lb baby (which he'd dropped down to at that point)over medication. I just wonder if not only did his treatment have an impact, but was there any impact in utero while I was on the medication?

Again, all required interventions to keep him alive and get him home. I wouldn't change it. I just hate that it keeps rearing it's head.

Tuesday, September 6, 2011

My Quirky Boys

I'm remiss in posting. My apologies. I have pics from the 4th of July that still need posted. Eek!

Since I don't have much time, I thought I would throw you a little nugget from this weekend. These boys are crazy, and loud, and frustrating at times, but in between all that are some moments that just make me so very glad.

We hit up the mall yesterday to get them some clothes. Gavin is in size 8 and has no winter clothes. Sam also needs some - their hand me down sizes are unfortunately not lining up - Gavin skipped size 3 winter clothes. We have size 3 summer clothes, but that was the time period where he went from 30% in height to 75% in height and we went up a couple sizes in a year! So we only have size 2 and 4 winter clothes, and 2 is too small and 4 is too big. Argh.

Also, Gavin only wants to wear jeans. He's too skinny for size 8 but needs the length. None of the brands at Younkers have adjustors, so we will have to go on a quest to get jeans for him. Some FB friends gave great suggestions (what did I do without Facebook??).

I digress.

As we were walking out of Younkers, I glanced back at Gavin. There was music playing and he was dancing as he walked. Doing his funky robot moves, totally in his own world, dancing to his own drummer. He's so awesome!

Later as we were walking to the play area, Sam was holding my hand. Every three or four steps he would do a twirl. This continued most of the length of the mall. Also awesome!

There's something about seeing a kid that that makes me so happy......especially when they are mine!