Wednesday, December 16, 2009

See you next year!

As you all know, Lincoln and I are catching a flight to Oregon tomorrow morning bright and early. Andy will be joining us on the 23rd, and we will all be coming home together on Jan. 4th. This will be the last post of 2009. All in all it was a good year, full of ups and downs, but that is life, right? :) I hope that 2010 turns out to be even better than 2009!

Until we see you again, here is our little elf, Lincoln, wishing everyone a Merry Christmas & a Happy New Year!!

Monday, December 14, 2009

Weekly Weigh-In

Okay, it is Monday again. This means that it has been another week on our calorie intensive eating adventures with Lincoln.

Remember, our daily caloric intake goal is 1340 calories, based on Lincoln's weight of 28lbs. I have found that despite all of the additional calories you can "hide" in normal foods, it is still very hard to get a toddler to eat everything you hope that they would in a day...especially if they have decided that they don't want to... But we have had some successful days this second week.

Daily Calorie Totals:
Dec. 8th: 1209 cal
Dec. 9th: 1160 cal
Dec. 10th: 1441 cal
Dec. 11th: 1135 cal
Dec. 12th: 1143 cal
Dec. 13th: 951 cal
Dec. 14th: 1431 cal

Average: 1210 cal/day (compared to 1131 cal/day last week)

Lincoln's Weight: 28lbs 5oz (+6.5 oz over last week)

For giggles...My Weight: +18.5lbs (over pre-pregnancy weight)

June's Estimated Weight (based on her gestational age): 1.5lbs (she measured 1lb at the 22wk appt, so this should be pretty accurate).

So. All in all, things are looking good! We will attempt to keep up this weight gain (fingers crossed) over our holiday vacation. Because we are leaving town (this Thursday!) this will be the last "Weekly Weigh-In" post until after the New Year. I will still attempt to keep track of his calories, but will be unable to get a weight on him, until we return home from our vacation and have access to our digital baby scale again.

Now for a picture of our Christmas cutie-pie.




Well. He certainly doesn't look "skinny" in this picture, does he? ;)

Friday, December 11, 2009

Could it be...?

I was speaking to some other mother's today, and they have both had children who have had issues with reflux. One of them mentioned seeing some pictures/videos of children who sleep with their backs and necks arched back. These children suffer from silent reflux.

Hmm. Andy and I have both noticed that Linc has often slept in that contorted position. We always just thought that it was a funny little quirk, but these other moms got me wondering if maybe it was a symptom of something more...

So, I looked up "silent reflux" online for some other signs and symptoms. He had enough of them to basically confirm that this could be something that he has been suffering from for a long long time. Previously we had been blaming his seizures and seizure meds for everything, but if you look at his symptoms excluding those as the cause, then it looks to be entirely possible that reflux is the root of this particular set of problems... So, I called the pedi, he agreed with me, and we were given a month's worth of Prevacid to try.

Here are the signs/symptoms that he has...
Sleeps with back/neck arched: Funny little quirk? Or reflux?
Only takes cat naps (45min or less): Seizures interrupt sleep? Or reflux?
Eats small meals/snacks: Seizure meds decrease appetite? Or reflux?
Sleeps better in arms on pillows: More soothing after seizures interrupt sleep? Or reflux?
Restless sleep during night: Seizures? Or reflux?
Frequent waking during night: Seizures interrupt sleep? Or reflux?
Often wakes crying/screaming: Seizures scare/upset him? Or reflux?
Doesn't self soothe back to sleep: Seizures scare/upset him? Or reflux?
Gets frequent hiccups: Funny little quirk? Or reflux?
Gags easily when sneezes/burps/chokes on food: Just a baby/teething thing? Or reflux?
Recent frequent vomiting w/ increased feeds: Teething/Illness? Or reflux?

Here is the neck arched position from when he was 6 weeks old. He didn't do it often back then, but has done it a lot since he was about 9 months old. It has improved somewhat in recent months, possibly because he has been sleeping with his head slightly elevated on a pillow.



I guess we will find out within the month if this "Silent reflux" and Prevacid pan out to be anything. Honestly, I really hope that this is the answer, because we are really struggling with feeding him more calories. It is quite the battle each and everyday, all day long. And wouldn't it be wonderful if a little antiacid is the answer to so many of our feeding/appetite/weight issues, not to mention all of the sleep struggles, that we have been facing for so long?

Thursday, December 10, 2009

The presents are on their way!

Heads up parents! The presents have been shipped to Salem! I love wrapping presents and looking at them all stacked together with their shiny bows (which Lincoln liked removing). I can't wait to see them under the tree in Oregon! It is funny, but Lincoln & I should be arriving in Salem about the same time that the presents do. Yay for X-mas!!

Wednesday, December 9, 2009

Viability Day!

Today I am 24 weeks pregnant, and if something were to happen (god forbid), and I were to go into labor and deliver June early...she is at the point in development where the doctors would try to save her life. If she were delivered before this point, they would not have attempted it.

Now, of course a baby delivered at 24 weeks (barely half-way through a normal 40 week pregnancy) would have a terrible struggle to survive, and would be even less likely to lead a normal, complication free life. So, we would very much like to keep her settled in there until at least February, but it would be even better if she stayed put until she was full-term (37 weeks) in early/mid-March.

Anyway, today is a pregnancy milestone to celebrate! Yay, baby June! We are looking forward to meeting you this Spring!

Here is my belly picture at 24 weeks (stretch marks and all)!

Monday, December 7, 2009

Weekly Weigh-In

I am starting something new here called the weekly weigh-in. This is the day that I will weigh Lincoln and report our calorie totals for the previous week.

Now, I know that weights can and will fluctuate on a daily, and sometimes hourly basis...but the overall trend should show increasing weights and calories over the long run...if we are doing everything right.

Calorie goal: 1340 cal/day

Calories for the past week:
Dec 1st, 726 cal
Dec 2nd, 1120 cal
Dec 3rd, 1051 cal
Dec 4th, 1179 cal
Dec 5th, 1319 cal
Dec 6th, 1240 cal
Dec 7th, 1283 cal

Today's weight: 27lbs 14.5oz

Here is a X-mas picture of our increasingly skinny little guy. What a cutie pie!



Our batteries on our adult scale ran out, but if/when I get them replaced, I will join in the weekly weigh-in. It will be interesting how things shape up once baby June is born (she will also be taking part in the weigh-in). Maybe going public will be some motivation to lose those baby pounds...? Gosh, I hope so! ;)

Our first week in December

Well, as you guys saw on a post last week, Lincoln was running a high fever between 102-104 F for about 3 days. He also had a lack of appetite, crankiness, sleepiness, and on Saturday a pretty weird rash appeared quickly throughout the day all over his torso, neck, and face. After some internet research, and asking some other mom's, it turns out that he had HHV-6, also known as Roseola, the human herpes virus - 6.

Sounds scary right? Well, I guess it is one of the most common viral infections in young children. 95% of adults have immunity, and almost all of the illness is gotten before the age of 4 years, with it being most common between the ages of 7mo-13mo. Once you get sick once you are immune. Well, Lincoln is 16 months, but well under 4 years of age, and all of the symptoms fit perfectly, so that is what he had.

As it is a human herpes virus, there is unfortunately some risk of injury to baby June if I am not already immune, but it is very likely that I am immune already. And if I am not, there is really nothing anyone can do, except hope for the best.

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I have finished my Christmas shopping, and we have a very nice stack of presents going under our tree. I am going to have to ship these off to Oregon pretty soon (tomorrow probably), so we won't get to enjoy looking at them until we see them again in Salem under my family's tree! Andy has not finished his shopping, and I think he is going to do most of it in Salem on Christmas Eve. Oh boy! Lincoln is not getting any presents on Christmas from us. He was already given his presents from us here. He seems to LOVE them, especially the musical table! He plays with it all of the time! He still doesn't really get Christmas, so we figured it would be best to just do it early here, so we wouldn't have to ship that large box up and then back down here.

Lincoln and I leave here on the 17th, and I am already starting to get nervous about all the details I need to remember and things we can't forget, when traveling for 2-3 weeks with a little one. Plus, I will need to buy a whole bunch of stuff once we get there...like a winter coat for Lincoln, diapers, wipes, his favorite foods, etc... My parents were nice enough to buy a Pack n' Play and a portable high chair for Lincoln to use while up there, as well as a carseat for June that we will use while visiting, and then bring back with us to Tucson. So the big baby needs for our stay are taken care of, so to speak, thanks Mon & Dad!

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Last Monday we went to see the nutritionist based on the referral we got from our Pediatritian. I hadn't been keeping a food log, because our appointment was supposed to be in February, but we got in on a last minute cancellation. I had been sort of keeping track in my head though, and I estimated that he was getting about 700-900 calories/day. Based on some research I did, 900 calories is what it said on the internet was needed for a 1-2 year old, and I knew we were getting close to that amount. Well, we learned that that is true for the average 1-2 year old, but since Lincoln is so large for his age, the nutritionist calculated that he needs 1340 cal/day. She said that eating 700 cal/day is equivalent to a 21 lb baby, so that is why he has been losing weight. She said that since he doesn't have a large appetite due to his meds, that we are going to have to increase and hide calories in the stuff he does eat. So, for example, instead of a 4oz bottle of whole milk at 75 calories, we do 2oz of whole milk and 2oz of half & half for a total of 118 calories. All of these little things add up, and we have been able to increase his caloric intake to over 1000 since we started tracking it last Monday. We have yet to reach the magic 1340 calories in a give day, but we have gotten within a few hundred calories 3 days last week! I am proud of our success so far, but it takes a lot of work and determination to get that much food in him, and a lot of patience on Lincoln's part to have me following him around shoving bites of food into his mouth while he plays. I really hope his appetite picks up, or his eating efficiency increases with all of these new teeth popping in, because I am not certan how long we can keep up this food focus intensity.

Thursday, December 3, 2009

Plush Organs?

So this is the silliest thing I have ever seen. Check it out... www.iheartguts.com/shop/



Wednesday, December 2, 2009

Fever!

Well, Lincoln is sick again. Of the three times Lincoln has ever run a fever in his life...Andy has managed to be out of town every single time! He has absolutely amazing timing...

Lincoln started with a low-grade fever yesterday. I took him to the pedi, worried about a secondary infection from the H1N1 flu he had ~2 weeks ago. Well, his ears, lungs, and throat all looked perfectly fine. I was told to monitor his fever and symptoms (fussiness, food refusal, diarrhea, vomiting, sleepiness, increased seizure acitivity) and to call back if things got a lot worse or his fever lasts more than 4 days. Well, overnight his fever spiked up to 102.5, the highest I had ever seen it. I fed him some Tylenol and Motrin throughout the night, and he spent most of that time in bed with me. Once he started to cool down quite a bit I put him in his crib and we both caught a couple of hours of uninterrupted sleep. This morning he was nice and cool, but his fever started to rise again throughout the day. When he woke up from his afternoon nap he was up to 103.7! This is the highest fever I have ever seen. I gave him more Tylenol and Mortin and we got into a cool shower. Then I let him play naked for awhile until he started to feel cooler. He is still running a fever, but seems better than earlier tonight. I am hoping that he does well tonight, because I am exhausted, and am really hoping that I don't catch/re-catch whatever it is he has this time...

Tuesday, December 1, 2009

O Christmas Tree, O Christmas Tree,

How lovely are your branches!
Your boughs are green in summer's clime
And through the snows of wintertime.
O Christmas Tree, O Christmas Tree,
How lovely are your branches!




The indoor decorations are up, and we are all thoroughly enjoying them! So far Linc has done very well with the tree, he has touched a little bit, but has never pulled on it or taken any ornaments off (although only about 1/3 of our ornaments are up, just in case). But he loves to look at it, especially in the morning, before the light in the living room is very bright, and in the evening, before the lights get turned on for the night. It makes us happy to see him enjoy the tree. :)

As for the outdoor lights...that is another story. I have been meaning to get out there on the ladder for the past month to switch out the pumpkin lights and put up the Christmas ones. Despite the many weekends that have come and gone since Halloween, the pumpkin lights are still hanging, barely... The wind of the past few days has knocked them mostly down, so I think I will just give them a little tug in the next few days to get them all of the way down. I don't think I will be able to find the time to put up the outdoor lights this year. Something else is always coming up, and since we will be in town for only another 15 days, there hardly seems to be any point in getting my pregnant self up there on the roof to do it...

I will definitely find the time to do it next year...right? After all, I won't be pregnant (I don't think) and Lincoln will be old enough to get really excited by the lights by the time he is 28 months old (I think). So I guess I will pack them away in the garage when I pack the Halloween lights up. Oh well...at least we got the indoor stuff up!

Thursday, November 26, 2009

What am I thankful for?

This. :)



For having these two amazing guys in my life!

Happy Thanksgiving everyone!!

Wednesday, November 25, 2009

A pound of flesh

That is how much baby June weighs now! I went in for a routine 22wk check-up earlier today, and Dr. B could not find the fetal heartbeat with the Doppler. Luckily, I had my hands full with a cranky Lincoln, so I didn't have more than a moment to think about what this could mean. Dr. B went out to get their portable ultrasound machine, saying that she thinks everything is fine, but she is gonna do a quick scan just to make sure. She puts the wand on my belly and immediately lets out a huge sigh of relief saying, "There is the heartbeat!" Apparently, she was actually very worried. She said that she was surprised that she was even more worried than I was. And she said "I just couldn't do that today." I interpreted the "that" as breaking the news that my baby had died in the womb the day before Thanksgiving. She went on to say that doctors get a little jumpy when dealing with someone who has a "history" (meaning a child with a genetic condition and 2 miscarriages, I guess), I kinda laughed and told her that she wasn't the only nervous one...


I then went on to express some of my concerns about baby June's measurements in the past, and some of her profile shots which seemed a little odd looking. So she said that while she had the ultrasound machine, she would just go ahead and do a full scan. Everything looked good. She was measuring exactly where she should be based on my ovulation date (with an EDD of 4/2/09). So I am thinking that we will begin using that as my estimated due date again. I asked her (a couple of times) if it was okay that she was a couple of days behind, and Dr. B said that as long as she is consistent then everything is fine. The measurements can be off a week in either direction. Her measurements were; femur length; 21wks 6days, humerus length; 21wks 5days, tummy circ; 21wks 6days, and head circ; 21wks. She went on to say that since baby June is sitting breach right now, that that always results in small measurements of the head circ. so not to worry about that. And baby June currently tips the virtual estimated scales at exactly 1lb! I can't begin to tell you were the other 13lbs of weight gain have come from...maybe all the sweets cravings I have been having. ;)

Dr. B also got us our first semi-okay profile shot. And there was nothing weird looking there (thank goodness), baby June looks great! See for yourselves!



Our next appointment will be a long ways off due to the holidays. I won't be seeing Dr. B or June again until Jan 13th, 2010! This will be the longest span of time throughout the whole pregnancy that I will go w/o a doctor's checkup of some sort. It makes me kinda nervous, but there is no reason to expect that anything will happen in that amount of time. And I will be busy with visiting our families for the holidays, so I am sure that the time will fly by!

The next appointment will be a busy one. We will be doing another growth ultrasound to check, one last time, on baby June's growth, to make sure that things are looking as they should. We will be doing the first of our cervical length checks to make sure that my cervix is staying long and closed. I will be getting the lab orders to do the glucose screening test to check for gestational diabetes. And after this appointment, I will be about 29 weeks along, so I will start going in to see the doctor every other week! I remember that at that point in my pregnancy with Lincoln, time really picked up and started speeding by. Before we know it, we will be welcoming June into the world! We are so excited (and petrified) by this prospect!

Monday, November 23, 2009

Two years ago

On November 23rd, 2007, the day after Thanksgiving we found out that we were pregnant! We hoped hoped hoped that this pregnancy would result in our first child...





and it did!! Little did we know how scary, and wonderful, that pregnancy would be. Little did we know how scary, and wonderful, our son's infancy would be. Little do we know how scary, and wonderful, each of his days in toddlerhood continue to be.

Ahh...what I would have paid to have been able to look into a crystal ball on that day, two years ago, and see my wonderful son Lincoln asleep in my arms. But this is real life. There are no crystal balls. No sneaking peaks at the future, or going back to change the past. What we have is today, and the hope that the plans we make for the future come true.

So much has happened in the past two years, and part of the magic of that time, was that we could never know how scary, and wonderful, each day would be. Lincoln is our firstborn, our son, our miracle, our snuggle bear, our wiggle bottoms, our cranky-pants, our happy boy, our blond-headed blue-eyed earth angel, the cutest baby in Tucson...and I wouldn't change who he is for anything in the world. He is the love of our lives. And on this date, two years ago, we found out that we had created a miracle. :)

Thursday, November 19, 2009

Sixteen months old!

My how you've grown!


November, 2009: 16 months old


November, 2008: 4 months old

Wednesday, November 18, 2009

Wordless Wednesday...

Tuesday, November 17, 2009

Newborn Hat

You know those teeny tiny knit blue/pink striped hats that they give you in the hospital? Well at some point during the first day at home with Lincoln his hat disappeared. We looked and looked for it in all the places we thought it could be. I was pretty sad to lose this memento, and his nice cozy head warmer. I was certain that the dryer had eaten it, or that a pack rat had stolen it, or maybe it was folded up inside a pair of too-small pants long since given to Goodwill. I was almost certain that it was not still in the house. I mean, it has been almost 16 months since it disappeared!


Well, I was wrong. Because guess what I found today buried in the couch cushions in his room? His little teeny tiny hat! I was so suprised! I guess I need to dig around in the couch cushions more often to see what other treasures I discover... :)



Ugh. Not sure why it flipped the picture. :(

Monday, November 16, 2009

Chinese Gender Chart

So, there are all of these goofy old wives tales, gender prediction quizzes and gender charts to help people with a baby on the way determine whether they are having a boy or a girl. Well most of these tricks and tools have turned out to be bunk. However, this one Chinese Gender Chart (on thebump.com) has been correct on 3/4 of my pregnancies...we aren't sure about the 4th because the miscarriage was too early to find out the gender (although I have a feeling that it was right that time as well). So here is the chart...


Pregnancy #1: conceived in May when I was 26...chart result: boy...actual sex: boy!
Pregnancy #2: conceived in November when I was 27...chart result: boy...actual sex: boy (Lincoln)!
Pregnancy #3: conceived in April when I was 28...chart result: girl...actual sex: unknown (both Andy and I thought it was a girl).
Pregnancy #4: conceived in July when I was 28...chart result: girl...actual sex: girl (June)!


How cool is that? I guess I should try to plan out my future pregnancies based on this chart! ...just kidding! ;)


So, for all of you who are pregnant or already have children...was the chart correct? Take your age when you conceived on the left, and match that with the month in which conception occurred across the top. Let me know in the comments how it worked for you!

FYI: Pink = Girl, Blue = Boy


Friday, November 13, 2009

Overstock dot com

I love this website. I often go there to purchase household bedding items that are too expensive in stores. In the past I have bought our down comforter, mattress topper for our guest bed, and Lincoln's cowboy crib bedding set. Today I bought a few more things...

Baby June's crib! For $160 when the original price was $312!



Her new gerber daisy bedding set! :)



And a new memory foam mattress for our bed!! On sale from $1,200 all the way down to $420!!


All for $1 shipping charges!!
So excited!! :)
Check out overstock.com if you haven't in the past, they have great deals on all kinds of stuff, not just bedding...

Thursday, November 12, 2009

Molars and Illness

These things do not make a good combination.

Yesterday, while Lincoln was cat-napping in my lap, running a fever of 101.5F, and snoring because he was too stuffed up to breathe through his nose, I noticed that he was cutting his first molar on the lower-left side. How miserable this week must be for him...to be teething (with molars no less!) and sick with the flu all at the same time. My poor poor baby. :(

He seems to have come down with the worst sickness he has yet to have in his almost 16 month life. Honestly, he is usually a pretty healthy baby. He has only been sick 2 other times...at 2 months old following his first in-patient hospital visit, and again at 8 months while on the immunosuppressant, ACTH, and a week after my mom had visited and came down with something while here.

I think this illness seems so much worse because before he was mostly still on a liquid diet, so food refusal and vomiting wasn't as big of a deal. For the past 2 days Lincoln has been on a whole milk, jello, pudding and yogurt diet. He can't breathe around anything more solid that these things without choking, and then of course vomiting it all back up. He has managed to keep most of this stuff down, although I just have to say that I am wearing my last pair of clean pants, so we haven't been entirely successful in keeping his food/drink in him either...

I have been pretty lucky so far, and have managed to not really get sick (hopefully that vaccine actually did the trick for me). I had a cough for a couple of days and a bit of a loss of appetite for those days as well. Mostly though, I am feeling fatigue from being on mommy duty day and night since Friday, with little break, and even less sleep.

Hopefully Lincoln is turning the corner now, and will be in much better spirits tomorrow. We will see...

Wednesday, November 11, 2009

Halfway There!

Today we are exactly halfway to March 31st, 2010 and halfway through this pregnancy (20 out of 40 weeks)! We might be even further than halfway is she decides to show up a few weeks early like her big brother Lincoln did, but we won't know that until she makes her grand entrance! I do know that my OBGYN won't let me go more than a couple of days overdue because the increase in complications make both of us too nervous.

So, to celebrate reaching the halfway point with a (as far as we can tell) healthy baby girl kicking away in my belly, I guess now would be as good a time as any to share her name with all of you. We played the name game about 2 months ago when we learned we were having a girl. But in case something happened to her these past months we have held off sharing the name with very many people because we might have wanted to save the name for another baby girl. However, because I have been thinking of her by name for so long now, I doubt I would be able to name a different baby this same name if something were to happen to this baby girl. And as we approach viability (24 weeks) things are looking better and better for our chances of bringing home a baby girl in about 4 months! Of course...we reserve the right to change our minds up until the name is written on her birth certificate...

Her name will be June.

We haven't agreed on a middle name yet, but the front runner in my mind is Elizabeth.

June Elizabeth Blatchford.

We think it has a nice ring to it. The name itself meets all of our naming criteria...old-fashioned, uncommon, easy to spell and remember, classic, classy, not made-up or weird. No, we did not chose this name to name her after anyone or anything...except the month of June itself. A sunny, warm, happy, joyful, summer month that everyone looks forward to all year long (at least everyone under the age of 18 and living in a non-desert state)! We hope that this is what she will come to mean to us, her extended family and friends, and the rest of the world around her. :)

Hang in there June, we are halfway there, halfway to meeting you face to face!

Monday, November 9, 2009

Swine Flu is Here!

Lincoln and I were lucky enough to get the vaccine at his pedi's office on Oct. 23, or so I thought...

Andy has been very very sick with a flu this past weekend and Monday. This evening he was still running a low grade fever, so will not be going to work tomorrow either. After doing a little internet research this evening on the CDC's website, apparently if you have flu-symptoms as of September, it is 99% likely that you have H1N1. After Andy texted his boss to let him know he thinks he has the "swine flu" he found out that someone who sits one cube over at his office is also home with the swine flu.

Now, this wouldn't be a huge deal, but yesterday and moreso today, Lincoln and I have both developed a sore throat and cough, which has gotten worse throughout the day. Again, this wouldn't be a huge deal...except Lincoln and I are both in the high risk categories. Lincoln is high risk for two reasons; because he is under 2 years old, and has a diagnosed neurological condition and epilepsy. I am high risk because I am pregnant. So now, let the worrying begin...

Tomorrow I will be making a call to both the pedi and OB to see if they want us to get tested for H1N1, or treated with Tamiflu. I just hope that Lincoln and Baby Blatchford come through this okay, whatever type of flu it may be.

Wednesday, November 4, 2009

Epilepsy Advocates Conference

We got a flyer in the mail about 2 weeks ago inviting us to the Epilepsy Advocates Meeting. For those that don't know, Epilepsy is diagnosed in anyone who has had more than 2 seizures in their lifetime. So, Lincoln definitely qualifies as an Epileptic. Technically, he is a Symptomatic Epileptic, which means that we know what causes his seizures. It was interesting to learn that 70% of all people with epiliepsy are idiopathic, meaning there is no known cause for their seizures. One year, 1 month, and 22 days ago we were desperately hoping that Lincoln fell into that group. But alas, Lincoln's first MRI on 9/17/08, confirmed that there were indeed structural problems in his brain that were causing the seizures. So knowing where we stood with Lincoln on the seizure spectrum...what did we learn from this conference...? Well, not much actually. The whole thing was geared more toward adults and adult's caregivers dealing with epilepsy...not so much anything about children, or children with developmental delays.

The guest speaker, a neurologist, epileptologist, and professor at the U of A was interesting and funny. But one thing that he did present was a slide with a pie chart on it. I don't think I will ever forget it... It showed the people with epilepsy; 50% are controlled with one medication, 11% with 2 meds, and 4% with a variety of different meds. Those that remain are 35%, of all people with epilepsy (in the USA I am assuming), who are pharmacologically resistant. Now at first this seemed to make sense to me. We were still trying to find the one or two meds that really get Linc's seizures under control, right? Well, then the doctor said that when new patients come into the office, they figure out who will be in that 35% group pretty quickly because those inital 50% of people respond to the very first med. they are put on, not just one med, but the very first. Then he went on to say that this only leaves 15% of people who will ever in their lifetimes, get control of their seizures, and the rest will continue having uncontrolled seizures forever. When stated that way, it really leaves us very little hope for controlling Lincoln's seizures in the future...especially with the number of different meds and combinations of meds we have already tried.

Honestly, I wish we hadn't gone to that meeting. Being 19 weeks pregnant, I am way too emotional to hear people's stories about how hard it is to live with epilepsy and all of the meds, and how difficult Linc's life will be, and how we will never truly understand what he is going through. It is heartbreaking to hear those words, and as his parents know that we can't fix this for him. I was in tears several times throughout the night. I doubt that we will be going to another one of those for several years...

Monday, November 2, 2009

November already?

If we hadn't jus had Halloween a few days ago, I wouldn't even believe that is was already November. I think it might have something to do with being a transplanted Northerner in a desert climate. Today it is 80 something degrees outside, and feels like I would think a June day should feel. I guess this is why we have the great influx of snowbirds arriving to the Sonoran desert daily. No one could ever say that the Tucson winter is not beautiful. But, growing up in a place where there is a clear shift between the seasons, and winters are known for rain, snow, ice, and wind...thinking about Thanksgiving and Christmas rapidly approaching, does not come easily as I am sitting here dressed in a tank top and shorts with our a/c running in the background. But all of the advertisments on TV and in the stores are daily reminders of the approaching holidays. Thanks to these reminders, Andy and I finalized our X-mas lists for each other, and our families, and are ready to go shopping! I almost always go a little overboard, and ever year I promise myself (and Andy) that I will control myself. I really do mean it this year... ;)

However, as much as I am looking forward to going home to Oregon for the holidays...a trip to the Nothern realm mid-winter required a new wardrobe for Lincoln, and a winter maternity wardrobe for myself. It is amazing how much you can get someone who is almost 3ft tall and 28.5lbs for $160, and how little you can get for someone who is 5'9", heavier than usual (hehe), and pregnant, for $370. However, after spending this much money on maternity clothes, I am thrilled to say that (barring any unforseen circumstances--which we have learned are never to be counted out) I will be sporting these clothes and a nice big baby bump come Christmastime in Oregon!

As most of you know, we had a scare last week at our fetal anatomy scan. Dr. B was worried that the legs were measuring week(s) behind the rest of her. So we had a level II ultrasound this morning, which is a much more in depth look at our little fetus, with better equipment and a more expereinced technician. Today, our tech found that baby girl was measuring, head/body/legs/arms at 18wks to 18wks 4days. This almost perfect matches what I know to be her actual gestational age, based on conception (ovulation) and my 37 day cycle. According to my LMP (last menstral period) she should have been measuring 19wks 4days, with a due date of 3/25/10. But she has only measured that far ahead once, at the CVS scan. All of her other ultrasounds have shown her to measure much closer to my known ovulation date, with a due date of 4/2/10. This however, is the first time that she has measured slightly behind, with a due date of 4/4/10. But at least her entire body is consistent with this date, so that is what we were mainly worried about. We will likely have a follow-up ultrasound at some point in the late 2nd trimester or early 3rd trimester to double check her growth and make sure she is still matching these dates. I am not certain is Dr. B will assign us a April due date, or just leave it alone at 3/31. Who cares, as long as she is healthy!

We got some more pictures of our little lady. Once again she made profile face shots very difficult to capture. We got a few, but they aren't the best, so we still don't have a good idea what she might look like once she is born. Here are the pics we did get...


Girly parts!


Splist screen of both feet. They looked perfect!



Split screen of both hands. On the left it is fisted by her ear. On the right she is giving us a nice high-five!


I think someone forgot to tell baby girl that Halloween was over. Check out her skeletor impression! Split screen of face shots. She is looking right at us...has 2 eyes in those eye sockets, and normal lips/palate!


Profile shot of her arching her back and kicking her foot up.


Profile shot of her head, chest, and pelvis. You can see her hand by her mouth and one of her thighs tucked up.




Saturday, October 31, 2009

Happy Halloween!!

Baby of Steel! Superman!! :)














Lincoln says Happy Halloween!! :)

Monday, October 26, 2009

Not the best news at today's OB appt.

Good News:
Baby girl looked generally okay. She had all the parts a baby girl is supposed to have; Stomach, kidneys, legs, arms, face, lips, brain, open hands, normal looking feet, heart w/ 4 chambers, nothing between the legs, umbilical cord. My cervix looked fine, and the placenta that we share looked normal.

Not So Good News:
Her legs and arms are measuring about a week to two weeks behind the rest of her. Her head circ. was measuring 18w3d. Her abdominal circ. was measuring 18w5d. Her humerous was measuring 17w2d, and her femur was 16w5d. Her averaged gestational age was calculated at 17w5d (which is consistent with an EDD of March 31st). And based on ovulation she should be measuring 17w3d (our original EDD of Apr. 2nd). So we are a little nervous that something weird is going on, but we are hoping the her head and abs are just a little ahead of the rest of her. Maybe she will be a nice fat chubby thing when she is born. Her weight is currently 8oz, which is normal for this age. It is hard to imagine that she will gain around 7lbs more (hopefully) before she is born.

My OB said that if we hadn't had the CVS she would have been worried about Down's Syndrome. As it is, we are being sent for a level II u/s at the hosptial within the next 2 weeks. We know it can't be Down's, but there are so many other small genetic changes (similar to Linc's) that can cause serious problems and wouldn't be picked up from the basic CVS test. My OB seems to think that this will turn out to be nothing, just a difference in dates, but she wants us to get a second opinion from the specialists just in case. We are all really hoping that this all turns out to be nothing, but based on our crazy history, we are a little freaked out.

Also, our little girl refused to cooperate for the photo shoot, and didn't give us any nice profile face pictures.

Her is a nice pictue of her stretched out little leg. The rest of her body is the blurry thing on the right (she was moving quite a bit, so we saw a lot of blurry images).


Here is a profile shot of her body. Her nice little baby butt, bent leg, ribs, spine, and belly are all pretty clear. Her face is blurry once again, of course.


The obligatory gender shot. Nothing between the legs!


Although not our main priority, hopefully we will get some nicer shots at the level II ultrasound.

Saturday, October 24, 2009

What happens at the pedi*, doesn't stay at the pedi

Pedi = Pediatrician ;)

For any of you who have seen us in the past 6 months, you are well aware of what a struggle mealtime has been. Well, I have been stressing about this for a long time, knowing that he wasn't eating enough all of these months. The problem with his appetite began when he started taking Topamax in April, which has a side effect of appetite suppression and weight loss. I have carefully watched what he has been eating and tried to get him to eat more. Most times this results in fussing or crying at mealtime, and a lot of frustration on both of our parts. Many many people have told me over these past months that he is fine and not to stress about what I alone was seeing as his eating issues.

When he was 9 months old he weighed 30lbs 2oz, 3 months later at 12 months old, he weighed 30lbs 4oz. A gain of 2oz in three months in not great. In fact, if he hadn't already been off of the charts for his weight (which he has been since he was 3 months old), our doctors would have been very concerned at his lack of weight gain. But because he was so heavy we were told to wait and see how things looked at his 15 month appointment. Well yesterday, I was unfortunately proven right, and all of those naysayers are wrong. He weighed in at 28lbs 8oz. A loss of almost 2lbs at this age is a huge deal, no matter where he was on the charts previously.


The naysayers have been saying that he will eat when he is hungry enough. Well sorry, I tested that once and it didn't work. He can go a full day without any solids, and only 10oz of milk, without any complaint at all. Obviously, this is not enough food. In fact, I found some portions sizes and recommendations for children 1-2 years old on the internet, and we determined that he, on a typical day, was eating the right amount of fruit and dairy, but less than 1/2 the amount of meat/protein and grains that he was supposed to be having. So for the past few weeks I have been trying to tank him up with the appropriate amount of food for a toddler, and falling short every.single.day in one category or another. We have been attempting to supplement with Pediasure for his afternoon snack, but he is not a huge fan of any of this. He would much rather have a bottle of milk instead. Well unfortunately, a kid his age cannot subsist on whole cow's milk alone.


I have known that he was lighter than he had been these past few months, but I was hoping that these weeks of concerted feeding effort would have gotten him to gain some weight...and maybe they did...maybe he was even lighter than 28lbs in the past months. Scary thought.


The thing that bothers me so much, is that I have been getting flack about our struggles from everyone who has witnessed it! All of our therapists, family members, and friends...our supposed support system... It was so hard to persist in my beliefs, in the face of all of their criticism, knowing that this feeding issue was something real, and one of the few medical things in Linc's life that I felt like I could do something somehow to make it better. I now love that I am right and they are all wrong. Although, I wish it were not true. I wish that he would eat like a normal 15 month old. I wish that he were still gaining weight and that this was not an issue for us...another issue on top of everything else.


In addition, his lack of appetite has compounded other developmental problems. He refuses to finger-feed himself, although I feel like he is capable of picking up some food off of his tray. I have seen him do it for months now, but he rarely puts any of it in his mouth. Also, I know he is capable of drinking from a sippy cup or straw, I have seen him do it several times, but I hesitate to force the issue of getting him switched over to a cup, because right now the bottle is the only sure-fire way of getting him any calories at all! These are the issues that our therapists are looking at. They want me to make mealtime fun and work on all of these skills (holding food, self-feeding, playing with food, sippy cup, straws, etc.)...well sorry, I just can't do it all. When you already spend 3-5 hours a day trying to get your kid to eat the right number of calories when he is not hungry, has to eat foul tasting medicine for 2 of his 3 meals, and is strapped into his high chair for long stretches of time...these other issues just fade in importance.


So, what are we going to do about it?? Well, I will be talking with the Neuro this week to see if we can get off of the Topamax (which is hopefully a yes, because he has started refusing it completely again), and hopefully this will help his appetite without impacting his seizures. Additionally, we will be getting a Nutritionist consult sometime within the next few weeks. And maybe adding some sort of calorie booster to his milk bottles. Plus, I am sure there will be a lot more stress and tears for all of us.



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Anyway....some of the other stuff we discussed at the appointment...


His stats; Weight: 28lbs 8oz- 90th percentile for his age. Length: 35" - off of the charts still. Didn't get the head circumference number, but they did say that it was at 50%. Which is very good for us, as hydrocephaly is something that we will always be watching Linc for.


He has this weird stripe up his right leg which is made up of little red bumps in a perfectly straight line. From far away it looks like a scratch, and maybe it started that way, but it has been exactly the same for 2 months. It doesn't appear to be something that is normally associated with one of the skin condition for TSC. Our pedi said that he had never seen anything like this before, so he gave us a refferal to a dermatlogist to see what he thinks. I will be making that appointment sometime next week. Luckily it doesn't seem to hurt or itch at all, as Linc doesn't seem to be bothered by it in any way.


Lincoln got 4 immunizations...DTaP, Hep A, seasonal flu, and H1N1 swine flu. He will need the flu shot boosters in 1 month. Oh boy. They also gave me the H1N1 shot in the interest of protecting their soon-to-be new patient in March. :)


And after all of this, I will leave you with a picture of our tall newly skinny sleeping little boy!

Thursday, October 22, 2009

Many Milestone Week

From Oct. 19th through Oct. 26th mommy and each of her babies will have a bg day of their own. I turned 29 on October 20th. And no, I do not feel any older. I would have completely forgotten if it weren't for all of the happy birthday wishes and gifts that were sent my way. Thank you all! I got some awesome b-day money from my Grandpa and Mother-in-law, a mug with a cute pic of Andy & I from Andy's parents, a notebook computer and some maternity clothes from Andy, and a winter maternity jacket from my Grandma. If you sent me some cookies, thank you. They didn't come with a card or any identifying info, so fess up here so I can thank you properly... ;) My grandma was in town this past week, and she took Andy and Lincoln and I out for a nice birthday dinner as well. It was a good day. :)

On October 19th, Lincoln turned 15 months old. I wished him a happy 15 month b-day, but it really wasn't a huge deal around here. He will get to celebrate with the pediatrician tomorrow morning. Oh boy! ;)

On October 26th we will be having baby girl's fetal anatomy scan. This is one of the big screening tests, as I mentioned before, where they look at her organs and bone structure to make sure she is developing as normally as they can tell while she is inside me. I have high hopes that everything will look normal because nothing bad turned up on her CVS test. However, we are naturally also very nervous about this screening. It is the last real diagnostic hurdle we have to get through before we see her in person this March. This is our 4th pregnancy, the 3rd time we have made it to 18 weeks, (hopefully) the 2nd time a baby has appeared normal via u/s, and (hopefully) the 1st time that we actually have a 100% healthy baby. Needless to say our fingers are crossed, and we would welcome any thoughts and prayers that you would like to send our way!

Thursday, October 15, 2009

Wave of Light

Today is pregnancy and infant loss awareness day.



At 7pm tonight I will be lighting a candle for each of my lost little ones. For the past three October 15ths, we have been participating in this day of remembering. We have lit the same candle three times to remember our first baby boy who was lost on 9/7/07, and now unfortunately we are adding another candle this year to remember our little one that was lost on 4/30/09. But these candles aren't just for us and our losses. They are for all of the women out there who have experienced losses...my mother, my grandmother, my husband's grandmother, and countless friends who I have connected with over the past 2 years. For whatever reason, our babies never had the chance to live their lives on earth, but they will never be forgotten.

Wednesday, October 14, 2009

Happy twenty-oners!

Happy 21st birthday little sisters!!!


Jamie Hughes


Jennifer Hughes

I hope you both have a great day and an even better year!

Tuesday, October 13, 2009

We have quickening!

It sounds like I am quoting the movie Highlander. But really, this is what the books call the baby's first movements that can be felt by the mother. I am feeling this baby girl a full 2.5 weeks sooner than I felt Lincoln, which is pretty normal for second babies. I love the feeling, and really, what mother doesn't? I can't wait for the strong kicks, even if they are to my bladder (which was big brother Linc's favorite place to kick, since he was breech for so long)!

Tomorrow I will go to the OB's to get some blood drawn for the AFP screening for NT defects. Then we only have to wait until Oct. 26th until we get to see her again for the fetal anatomy ultrasound! We will hopefully have some new sonograms of her to share here! :)

Monday, October 12, 2009

Grandma is coming!

My grandma (Linc's great-grandma) is coming to visit in a few days! I am really excited about this, as I love having family and friends come to visit us in Tucson! I don't know what we will do while she is here, if anything, but hopefully we will all have a good time!
Here is a picture of her with Lincoln, when she came down to visit this past New Years.

Monday, October 5, 2009

Big Milestone!

We have canonical babbling!!

We have been working on this speech skill with Lincoln for around 6 months. Normal babies begin doing this at 7-10 months of age, so it is great to hear him finally doing this. We are hoping that this continues, and that this becomes a platform for some eventual word play, recognition, and development. Yay!!

Sunday, October 4, 2009

Picnic in the Park

The weather is finally getting close to being cool enough to spend some quality time outside. We decided to go for a picnic at our local park...not coincidentally called Lincoln Park. The day was a sunny 90 degree day. Better than it has been, but still pretty hot in the full sun. Lincoln is a little furnace, so he is hotter than most, so he ended up pretty hot & cranky by the end of our time at the park. We spent about 2.5 hours there, starting with lunch, and ending with some playground time. All in all, a pretty good time!



Lincoln really wanted to climb on mommy, but mommy had had enough of it by this time. We had finished eating, and were just waiting for him to finish his mouthful and settle his tummy before we went to play. Lincoln was not too happy about being restrained away from me. Check out that pouty face, followed by tears.





The accusing glare that Lincoln does so well. Daddy, how dare you keep me away from mommy!



After that little pout/cry fit, he got to come sit in my lap for his bottle of milk. Then when his cheerfulness was restored, we went to play! Lincoln liked the swings, but seemed to get tired of them quickly.








After the swings, we tried the slide...we discovered that a tired Lincoln has no love for the slide. I think it was just too disconcerting for him to try to keep his balance. Sorry the video is on its side, I was going to take pictures of it, but at the last minute took a video instead. Oh well. You will just have to cock your head a bit to watch.

Thursday, October 1, 2009

Momma got a haircut!

Before:


After:


What do you think?

Wednesday, September 30, 2009

A well documented beginning...

Almost as well documented as Lincoln's beginning (but not quite), our little girl has already had many photographs (or more precisely, sonograms) taken of her. Today was the first appointment I have had where we didn't take a peak to see how she is doing. It was blessedly uneventful, which is always a wonderful thing (I haven't had very many uneventful appointments while pregnant). Dr. B found her heartbeat with the doppler pretty quickly, and listened for about 5-10 seconds. It was a perfectly normal appointment for 14 weeks!

Our next appointment on October 27th, will be the fetal anatomy scan...and really one of the last big hurdles to cross before we can hope to believe that she might truly be 100% healthy. The other hurdle is called the AFP (alpha fetal protein) test, which is just a blood draw for me in about 2 weeks. The AFP is a screening test that looks for neural tube defects like spina bifida (one of the main common birth defects that a CVS cannot test for). The fetal anatomy scan on Oct. 27th is another ultrasound where our doctor spends time looking at the baby's heart, blood flow, lungs, brain, kidneys, stomach, diaphragm, umbilical cord, spine, hands, arms, legs, feet, and facial structure to make sure that everything is developing appropriately and is in the correct place and the correct size for her gestation. We will also be getting assigned an official due date. It should be somewhere between March 25th and April 2nd, but in all honesty it doesn't really matter, because she will come when she comes.

Here she is, in all her embryonic (weeks 3-9) and fetal (weeks 9-40) glory! These are pictures of pictures, which makes them even more fuzzy than a normal ultrasound picture would be. Sorry.


Week 6, you can see the gestational sac (black oval), and inside a little blur that is the baby. Believe it or not, we actually saw her heartbeat that day!


Week 8. You can see how much she has grown. She looks like a little gummy bear with that giant head, and little arm and leg buds. You can even see her tail!


Week 10. She has now graduated to a true fetus, which she will remain until she is born. A little alien like, you can see her even more giant head, as well as little tiny black pinpoints which are her eyes, and the arms and legs again.



11 weeks (CVS test). This picture is a little less than 1 week after the previous one, but instead shows a profile view. You can see her head on the left and her body on the right. Her arms and legs are curled up close to her body in this picture, but we did see her moving them during the CVS procedure.

These pictures were taken over a period of 5 weeks. Isn't it amazing how quickly they grow and change? Almost a month has passed since her last picture. I wonder what she looks like now? :) We will 'see' her pretty face again in one month at the fetal anatomy scan. I am hoping to be feeling her movements by then also!
 

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