Sunday, December 25, 2011

Merry Christmas!

Hey everybody!

I hope that this note finds you spending precious time with your families over the holiday season.

We realize that it's been a while since you've heard from us... that's Mike's fault.  He's started and stopped at least 8 times a new blog post.  Funny thing... we were getting lots more rest when the kids were in the NICU and weren't crawling around.  Sometimes the best intentions lost out to hectic schedules and a lack of sleep.  Sorry. 

So here's a really long update about where we've been for the last 6 months.  It's been a bit of a ride!


Logan is growing up so fast! He currently weighs a whopping 19.8lbs and is 30” long. He’s got 8 teeth and we’re currently starting the transition to table food. He’s not so sure about this yet – but he does love grilled cheese, pumpkin bread and “cookies” aka Cheerios. He’s constantly changing and developing. He is quite a chatter box, usually the louder the better. He’s crawling and pulling himself up on everything. He’s recently started to get daring and stand on his own or go from table to couch unassisted. We’re pretty sure this is going to put us in the ER with a “bonked” head soon. He has an obsession with taking his sister's toys – it doesn’t matter if he didn’t want it before, as soon as she has it, he does. He’s got crazy blonde hair and an adorable, melt your heard grin. He’s a very happy little boy.
Other than two bouts of croup, and quite a few ear infections, Logan’s been healthy. After our fifth ear infection in a row, it was decided that tubes would be the best thing for him – so on November 4th he got tubes. And knock on wood, so far, no more ear infections! We’re hoping this continues.
We got good news in August from the neurologist. A routine NICU head ultrasound on New Year’s Eve 2010 revealed that Logan had a possible PVL - periventricular leukomalacia – in his brain. Basically PVL is small hole in the brain where the white matter in the brain has died. PVL is commonly associated with cerebral palsy. While the neonatologist was skeptical of whether or not it was a PVL – they said all we can do it wait to find out for sure. It’s very difficult to get a good MRI image of a premature babies' brains as they often appear cloudy due to the developing dura (sac around the brain). We were referred to the pediatric neurologist who told us that we’d have to wait until Logan was older to see if there were any signs to be concerned about – stiffness in his legs, etc. If at that time there were, we’d do an MRI to get concrete answers. Our visit to the neurologist in August showed minimal concern for possible CP – and he was cleared from needing to go back!


Miss Caroline’s update is a little longer and a little more complex.
Caroline is currently 14.14lbs (although we think most of that weight is in her cheeks) and 26” long. She’s got two little teeth and has recently found her voice. She loves to tell you exactly how she feels. We’re pretty sure that most of the time it’s full of words that we’re glad she can’t say.
In the last blog update, we mentioned that she had some eating issues that we thought we were getting figured out via being treated for reflux. While things did get better, it was temporary. Although she did stop screaming when she ate, she just wasn’t eating the volume she needed to sustain or gain weight. After consulting with the GI doctor, it was decided to do a quick endoscopic surgery to double check that there was not medical reason for her refusal to eat (which there wasn’t) and to put in an NG tube. An NG tube is a nasogastric feeding tube that goes into her belly via her nose. The pros – we can feed her the volume she needs at every feeding, the cons – it’s taped to her face (which she hates) and she can pull it out (which she did several times). The hope was that we could stretch out her stomach by increasing her volume and therefore, she’d start to eat more. After 6 weeks, we were not making any progress and it was beginning to cause more harm than good as it was causing her to be very irritable and upset. She was also having “overflow” issues. When tubing her the 3.5 oz she ate every three hours, after getting to around 3 oz – it seemed as though there just wasn’t anywhere for the formula to go, and thus, it “spilled” out her mouth. She did not love this.
We knew the next step if this didn’t work – a gastric feeding tube or “g-tube”. This would be a permanent tube inserted into her belly that she would be fed through. This was a decision we had feared having to make and one that we lost quite a bit of sleep over. We did a lot of research, solicited a lot of opinions and really struggled with what to do. We had heard really good things about g-tubes, and also had heard really bad things. 

Eventually the NG tube wasn’t working and the decision made itself. On August 11th Caroline had a g-tube inserted in what was supposed to be an easy surgery. The g-tube would be inserted via the GI doctor and pediatric surgeon, she’d spend the night and come home the next day. It was a rough 48 hours and she seemed to be in pain and didn’t overly tolerate her feedings, but she seemed to be doing better and was released to come home Friday night as scheduled.
When she woke up Saturday morning things had changed. She was continually vomiting (which we had read sometimes happens in children with g-tubes), was very ashen, wouldn’t open her eyes and wouldn’t make any noise unless touched – when she’d cry. Something just didn’t seem right. We called the GI doctor on call (who was not our pediatric GI) who said she was in pain, ordered Tylenol with Codeine and said if she was still vomiting tomorrow to take her in.  Melissa decided that something just wasn’t right and decided to take her to the ER. We were rushed back to the Children’s ER and immediately given a battery of tests – a very scary experience. She had developed a severe infection somewhere in her body. Antibiotics were started immediately so we don’t know for sure where the infection originated, but we’re led to believe in was in her abdomen. We would later learn that the ER doctor and nurses were afraid that she wasn’t going to make it, and we were told that if we would have waited until the next day to bring her in (per the doctors instructions) – she most likely would have died. She spent a week on the pediatric floor at Mercy and came home a happy baby.  Melissa listened to her instincts and it was the right thing to do.
For those of you who are medical people, in the NICU, at the first sign of infection you run a CRP test (C-Reactive Protein) which tells the level of inflammation or infection in the body. If this number is elevated (above 0.4) you start antibiotics and treat for an infection. You never want to see a CRP above 1. When Caroline was admitted to the ER, her CRP was 26.
While in the hospital, they ran some more tests and it was determined that she also has a delayed gastric emptying condition. Basically her stomach doesn’t empty its contents as fast as it should. Thus, when you feed her too much, she “overflows” as it has nowhere to go. It’s something we’re hoping that she outgrows soon, as that's really the only resolution... there isn't an easy treatment. To combat this and to guarantee that she gets the necessary nutrition, she is hooked to a continuous drip at night. Via a feeding pump, she receives 1oz an hour for 10 hours at night. This helps decrease the minimums she needs to eat during the day and guarantees a baseline of nutrition for her to grow and develop from.
After her g-tube insertion, she was doing really well with eating everything orally (bottles and medicines almost all the time - go figure) with the exception of her night drip. It was decided that we’d start introducing solid foods as it was something we developmentally needed to do. Unfortunately, a switch flipped when we tried this and we took 50 steps in the wrong direction as far as her feeding aversion was concerned. She suddenly refused everything orally – no bottles, no food, no medication – and would gag and force herself to vomit if you tried.  We’ve spent the past three months battling this feeding aversion – going through many speech therapists (speech therapists deal with feeding issues in babies) with no luck. Trying to feed her food or a bottle resulted in big tears and lots of screaming. Her GI doctor decided it was time to send her to Iowa City for an evaluation their children's' feeding clinic. Luckily for us, Iowa City is home to one of only a few feeding clinics of its kind in the country. They only accept one baby a month into their intensive 3 week feeding clinic – and see great success with their patients.
In early December, Melissa took Caroline for the first of several initial evaluation sessions in Iowa City.  While there for her 3 hour session, she decided that it would be a wonderful time to begin eating and consumed 1/2 a jar of pears and even picked up several puffs off the table and ate them.  Not more than 12 hours earlier Mike had tried to feed her some of the very same pears and she reacted as if he was trying to put her eye out with a hot stick.  

Anyway, the good news is that since that session, and using some new techniques that they suggested, Caroline has begun to eat "first foods' off of a spoon.  It's not for all feedings, and is only a first step... but we're very encouraged.  We go back to Iowa City in early Feb for a longer session and to determine if she'll qualify for the 3 week session later this year.  Since we're still not eating all foods all the time, and we're still balancing the need for nutrition with her delayed emptying syndrome, we're guessing that we'll be spending some quality "vacation" time in Iowa City teaching our daughter to eat. 
Caroline is off of her oxygen! She still has three small holes in her heart (2 VSD’s – ventricular septal defects and a PFO – patent foramen ovale) but they’re small enough that the cardiologist is pretty confident that they should close on their own as she grows. She also was victim to the wrath of ear infections and had tubes inserted in late October – and has since been ear infection free. 

She is being closely followed by a pediatric craniofacial doctor regarding her head sutures. There has been some concern that they were prematurely closing, but we were thrilled to learn last week that they were still open. She is still followed by an endocrinologist for thyroid issues. We’re hoping that her dosage stays the same so we can eventually try weaning her off her medication.
Because she was so tiny and has had quite a battle to get where she is today, it’s taking her longer to catch up developmentally. The great news is, that a MRI of her brain showed that everything was normal – so we know it’s just a matter of time. She just learned to roll over (a huge milestone) and we’re always thrilled to catch her playing on her belly. Babies who were on oxygen tend to hate tummy time – and the g-tube doesn’t help either – so they said she will probably be a baby that never enjoys spending time on her belly. We’re in the process of learning to sit up and are making great strides in this. Part of the delay is that Caroline doesn’t have the trunk strength yet (due to her size and prematurity) to do these things yet. Her PT is confident that once she develops this strength, she’s going to make great strides in sitting, crawling and walking. Our goal is to have her walk by the time she’s 2 years old corrected (or 27 months old). While she has delays with sitting, etc – her fine motor skills seem to be developing nicely.
And if you made it through all that, you're probably saying to yourself, "Holy Schnikeys!!! Those kids have some problems!"  

The thing is, we've got the experience to know that of all the kids who come out of the NICU after starting where ours did, we're living on easy street.  We've met with parents and "graduates" who will deal with extreme health issues all of their lives, developmentally and otherwise.  The stuff we deal with is child's play compared to those folks and while it may not have been a "normal" path to take... our's has been an easy one with an immense bright light at the end of the tunnel.  We consider ourselves blessed.

And one last little thing to touch on before we get to the pictures (and yes... there's a lot for you to have a look at!).

While our lives have been hectic, they have also been bearable, manageable, and fun thanks to the tons of support we've gotten from our families, our workplaces, and our friends.  

The extra hands during weekend visits, the loads of laundry done, the chance for a night out just the two of us... all wouldn't have been possible without help from our families.  

The litany of appointments - nursing visits, doctor visits, specialists, hospital stays, surgeries, and the time needed to care for a kid with an ear infection just two days after the other kid had needed the same thing... Without our incredible support from our bosses, coworkers, and their willingness to help us manage our schedules and work from a variety of locations (home, hospital rooms, Iowa City), we would be living in a van down by the river.  We are truly blessed by your support for our young family.

And to our friends... thanks for all your help.  Whether it's tolerating a double stroller at dinner, being willing to let us talk about something other than feeding schedules or poop consistencies for a couple hours, or the incredible food you brought us (that we are still pulling out of the deep freeze and chowing on during hectic times).  You mean the world to us!

We want to wish you all a very happy holiday season and hope that you and your families are as blessed in life as we have been these past 14 months.  

All our very best to you,

Mike, Melissa, Logan, and Caroline Vogel

And now the pictures!!!

A couple of Hawkeyes trying out their Bumbo Seats

Caroline with her NG tube and a big smile.
This was a pretty rare combination.

Logan LOVES squash!

A day's worth of bottles.

Logan's first 2 teeth.
He has 8 now.
Caroline has her bottom 2.

Caroline happy before her G-tube surgery.

Caroline with her G-tube.
It has since changed to just a button- no tube poking out of her.

A very fancy lady.

"And you expect me to STAY in this spot???"

This hat is gone...

Big smiles from little Miss C.

Big smiles from Big L.

"Did you guys know that these feet are MINE???"

Caught in the act of thievery.

It's been a long season, but we were there for Daddy!

"Who doesn't love a bath???"

Dressed for Halloween at Daycare!

The real Halloween costume - Skunks.

Caught in the act of some Skunk on Skunk crime.

Logan's ok, but Caroline isn't too sure about this Halloween thing.

Aunt Caitlin visited for their first birthday!

The whole family celebrating the first birthdays!

Logan was very into his cake.

Caroline was peeved that we got frosting on her beloved binky.
Logan was VERY into his frosting.

An example of trying to feed Caroline.

Notice the tears mixed with carrots... 

"Look Dad, you can't BS me.  I've been in this gown before.
It means I'm gonna wake up all pissed off and uncomfortable."



Logan unsure of Thanksgiving dinner

Uncle Nick from CO visited for Thanksgiving in Topeka

Caroline eating puffs!

A much more content Caroline eating puffs and carrots after our
Iowa City visit.

"Caroline... come here!  I heard Mom and Dad talking about what
we're getting for Christmas!!!"

Saturday, June 25, 2011

Professional Photos

Hey all,

It was a rainy Saturday here in Iowa and my boss Tim Bloomquist was more than generous with his time taking some photos of the twins in our studio.

His landscape work is amazing.  Have a look here -

Shooting with two 7 month-olds was a bit of a challenge - especially with one as tempermental as Caroline, but he sure made it work.

Here's 3 shots that stood out right away:

Logan and Caroline on the blankets my late Grandmother made.

Logan's tummy-time at daycare is paying off!

One of the few smiles we were able to get from Miss C.

There will be some more - including a family portrait - but you may have to wait until after the 4th of July trip we're making to Topeka.

Hope all is well with you and your loved ones.

All our very best,

Mike, Melissa, Logan, and Caroline Vogel

Tuesday, June 14, 2011

Test photo upload

Test photo upload from my phone.

Logan's teeth came in early!

- Posted using BlogPress from my iPhone

Tuesday, June 7, 2011

7 months...

Hey gang -

On Sunday the twins turned 7 months old... of course that's just 4 months old if you correct their age for the 3 months premature that they arrived...

During the past 7 months, we've had all sorts of firsts - first breaths without a ventilator, first bottle, first night at home, first night sleeping all through the night, first blog update deadline missed, second blog update deadline missed, third blog update deadline missed...

And because of those missed deadlines, there's a lot to get you all caught up on (and of course a bunch of pictures and some video too)...  so hang on to your hats, we're off!

Caroline - Little miss Caroline is still little and her not eating has been a pretty big issue for us.  We're finally beginning to see some progress with her, but it has been a long and very frustrating path trying to get her to want to eat.  After countless doctor appointments, occupational therapy visits, an x-ray swallow study, thickened feeds, it all culminated in a return to the hospital for Caroline in the end of May.  In order to fast-track some tests and to extensively monitor her eating habits and the behaviors that we'd been reporting, the doctors placed Caroline back in the hospital for 3 days.

And it seems that from her admission, we may have figured out a solution.  Caroline suffers from acid reflux and is on a high dose of Prilosec to combat it.  Her food aversion was a result of her figuring out that when she ate, she felt bad and thus... why eat???

Now that we've seemed to have solved the pain of the acid reflux, she's beginning to realize that food isn't all that bad (and thus confirming that she IS actually my daughter).  We may still have our moments, but it's not nearly the struggle we were encountering for the first few months out of the NICU.

I'm not going to sugar-coat it... the reason this blog is so late is directly tied to the constant battle we had to wage every 3 hours trying to get our daughter to eat her bottle.  It was brutal, frustrating, and made us feel pretty powerless to help her.  I'd tell you about it, but I think the video below explains it the best.

All in all, it made for a baby who just wasn't happy.

But as you can see from the video below... things are changing.

She's beginning to be happier and act more like "a normal baby" - which includes eating.  This is big news for us b/c we were growing concerned about her slow rate of growth.  If she's not growing consistently (especially b/c she started out so small), it can really affect her development.  So, as parents, we're much happier that our little gal is beginning to eat.

Which leads us to some eating news about Logan.

The little guy (as little as 15lbs. can be) is now eating 1 meal a day of rice cereal.  And loving it!!!

Check out the video of him trying it for the first time:

For as difficult as Caroline has been, Logan's been our saving grace.  He's just been the perfect little guy for us- happy to play with us or by himself, easy to go to bed, hungry as a mule, and hardly ever fussy. I'm beginning to rethink his middle name, wanting to change it to Lebowski- because our little dude abides!

He's also discovered spit.  And as you'll see in the video below- it's a blast for him!!!

So, as you can tell... we've been busy, but we're turning the corner to a much more fun sort of busy.

There's a lot more from the past few months and I'll let the videos and pictures tell the story:

First... Logan offers Caroline a little "help".

Next we enjoy a perfect chorus from both sides of Dad's lap!

And finally, from just this last weekend, someone's learning peekaboo!!!

And here are some fun pictures to get you caught up:

Logan catches a nap with Grandpa Chris

When she was really fussy, Caroline could nap anywhere.
Here she's asleep on Mom's lap.

Though they're still not really aware of each other, they seem to
get along pretty well for now.  Logan held her hand for the entire nap.

Bathtime can be exhausting... or their warm fluffy blankets are just
too comfortable!!!

After a stressful feeding of Caroline, it wasn't uncommon to nap... for both of them.

Grandma Carol learns that the warm sleeping baby can induce instant narcolepsy

Caroline before her X-ray swallow test.  They had to swaddle her and strap her in to
keep her in one position and as still as possible.  A tall order for our little wiggler.
She was NOT pleased with us after this.
My old college roommate Jeff Lawson visited from LA and was given some
hardcore "hands-on" baby training.

Someday when he's a teenager and been giving his mother a rough time, I'm going to bring out
this photo and remind her that she's got it coming to her from him for taking this photo
and putting it on Facebook.

Logan didn't wait until his teen years.  He projectile-pooped all over his Mom on Mother's Day!

Jedi Master in Training.  The force is strong with this one.

I've got my derby hat... ready for the ride in the convertible Dad.
What do you mean we don't have a convertible???

Derby hats are for suckers.  I'm growing out my hair  as fast as possible so that I
can rock out some stylin' bows.

Logan usually sleeps with his hands held high above his head.
This one with his hands together was too cute to pass up.

Right hand on her face is a very typical position to find Caroline asleep.

Dad's shades are too big now... but I'll soon be stealing them !

Caroline during her hospital admission.
She did pretty well, but was less than impressed with the nursing staff.
She missed her favorites from the NICU - Megan, Ashley, Cheri, Karla, Sarah
and all the other "Green Ladies".
"What do you mean, she's here to stay, Dad???"

Michael's Aunt Barb visited from CA and had a wonderful
weekend pampering the babies.

Grandpa Jim hanging out with Logan.

I can almost sit up on my own Mom!

This is the BEST toy Mom!!! You can't ever put it away and Dad doesn't have it at all!!!

My hand's cold Mom.

So we've been a little busy... sorry for the lack of updates.  I'm looking into a way to update the blog easily from my iPhone.  If I get that running, I'll be posting with a lot greater frequency - I can type with just one hand on it while the other is full of baby!!!

As always, we're extremely thankful for all the love and support we get from you all.  We hope you all are having a wonderful spring and enjoying your family and loved ones.

Keep an eye out for us... we're beginning to be mobile...  The whole clan's been out to breakfast a couple of times, out to dinner once, and even made a trek to Iowa City for a weekend.  Topeka had better be ready for July 4th...  If you see us out and about- don't hesitate to stop us and get caught up!

All our very best to you and your families!

Mike, Melissa, Logan & Caroline Vogel