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
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!
CAROLINE
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!!!
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| A couple of Hawkeyes trying out their Bumbo Seats |
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Caroline with her NG tube and a big smile.
This was a pretty rare combination. |
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| Logan LOVES squash! |
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| A day's worth of bottles. |
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Logan's first 2 teeth.
He has 8 now.
Caroline has her bottom 2. |
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| Caroline happy before her G-tube surgery. |
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Caroline with her G-tube.
It has since changed to just a button- no tube poking out of her. |
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| A very fancy lady. |
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| "And you expect me to STAY in this spot???" |
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| This hat is gone... |
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| Big smiles from little Miss C. |
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| Big smiles from Big L. |
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| "Did you guys know that these feet are MINE???" |
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Busted!
Caught in the act of thievery. |
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| It's been a long season, but we were there for Daddy! |
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| "Who doesn't love a bath???" |
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| Dressed for Halloween at Daycare! |
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| The real Halloween costume - Skunks. |
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Busted!
Caught in the act of some Skunk on Skunk crime. |
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| Logan's ok, but Caroline isn't too sure about this Halloween thing. |
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| Aunt Caitlin visited for their first birthday! |
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| The whole family celebrating the first birthdays! |
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| Logan was very into his cake. |
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| Caroline was peeved that we got frosting on her beloved binky. |
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| Logan was VERY into his frosting. |
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| An example of trying to feed Caroline. |
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| Notice the tears mixed with carrots... |
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"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." |
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| G Q |
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| ELLE |
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| Logan unsure of Thanksgiving dinner |
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| Uncle Nick from CO visited for Thanksgiving in Topeka |
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| Caroline eating puffs! |
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A much more content Caroline eating puffs and carrots after our
Iowa City visit. |
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"Caroline... come here! I heard Mom and Dad talking about what
we're getting for Christmas!!!" |
