Wednesday, June 29, 2011

Diving Board Fun

Jacob has been reluctant to dive off the low-dive this year at the pool despite having done it in the past at other pools. His explanation was that the deep-well at the pool we joined this year is 12-feet, and he's only been in 10-feet before. (This is classic evidence that he is my son...quite calculating.) I enjoy making a fool of myself on the ol' boards, so I've been borderline begging him to join me as it would give me more of an excuse to jump off of the boards at times other than adult swim. I received the call today that he'd taken the plunge and proceeded to repeat the feat several more times giving me hope that we'll never return to Jacob as the diving board observer. As it turn out, Jacob's friend Cole was the coaxing factor rather than his ol' man. Come to find out, Cole actually jumped off of the high-dive which means I'm guessing Jacob will be bringing his tape measure to the pool tomorrow.

Monday, June 27, 2011

JG modeling

We're thinking this may be a not-so-subtle attempt on Janie's part to suggest she has a future doing cheesy photo shoots.



Another Jensen underwear update: On a day Jensen wore plaid shorts in the aqua/purple/pink (Easter-ish) color scheme with a floral shirt containing mostly primary colors, it was discovered that she spent all day Saturday free of the burden of underwear. Safe to say she dressed herself.


Jensen has apparently also found it quite humorous to call her Poppy D by the name used by so many others...Pastor Don.

Thursday, June 23, 2011

Feeding Tube Update

We're pleased to let you know that Janie's reacted well to the tube in her stomach for the 1st 24 hours! Thus far, there hasn't been a single spit-up. This is pretty remarkable and we are pleasantly surprised. Obviously, we cannot see what's happening in her stomach, but we trust that it is properly dumping her food into the intestine as it should. Keep in mind, this is the first significant portion of food in her stomach since January.

Assuming her stomach continues to tolerate the food, the opportunity exists for being less dependent on the feeding tube/pump. For example, it's possible over time that we could begin to simulate "meals" for Janie rather than a continuous flow. Of course, we don't want to get ahead of ourselves and realize it's been only 24 hours, but it gives us hope that in time the pole could become less and less an active part of Janie's life. (I'll have to get a picture of our friend the pole up on the blog so you can see Janie's shadow while she's at home.) We love the poll because it helps to sustain our daughter, but we won't be sorry to see it go some day!

Thanks for your prayers and please pray that Janie's stomach continues to accept the food and that, in time, she'll be able to tolerate larger quantities of food over shorter timeframes.

Wednesday, June 22, 2011

June 22, 2011

Today's GI appt ended up being more involved than we'd anticipated when we showed up at 8:00 AM. In the end, it's probably a good thing but it required some flexibility and phone calls to Greensboro asking for additional help with Jacob and Jensen. Our sweet friends and family who have so often helped us on a moment's notice will never comprehend our deep appreciation for them. Most of the time, they're altering their full schedules on the fly to accomodate our needs. It's a blessing. (Today, a co-worker came to the hospital to pick me up as we'd left my car at the office thinking I'd be back an hour later.)

Back to Janie...We've sort of felt like we're spinning our wheels with next steps on her eating. As discussed at length, the current feeding tube arrangement is sort of like a band-aid that's been in the pool too long and cannot be relied upon much longer, but there hasn't been much in the way of answers to the question of "where we go next?". Unexpectedly, but probably necessary, the next step was taken this morning. Janie's feeding tube has officially been pulled back into her stomach so that we can observe how she handles it. In the end, it's trial and error and we won't know until we try. So after 3 x-rays this morning, we now know it's correctly positioned in her stomach. We'll be anxiously keeping an eye on her over the coming hours to see how she reacts. Hopefully, her stomach will accept the food and we won't be back later in the week needing to drop another tube into her intestine.

You may recall that coming out of heart surgery, we thought the tube was in her stomach. We asked you to pray that her stomach would respond to the feeding regimen. Later, we found out that it was in her intestine. Well, we humbly ask you to fire those prayers back up again. If her stomach is willing to accept this nutrition directly, two things are more likely. First, she may finally better feel the sensation of feeling full and hungry which could help her eating. Second, it would allow for use of a G-tube (direct port to her stomach) going forward should she not immediately figure out how to sustain herself completely via her mouth. There is a varient of a G-tube that can go to the intestine but we're told it's not an ideal solution.

Jennifer had a noon appointment scheduled for her this morning with a nutritionist to make sure our recipe is right for feedings to the stomach and she should be in that appointment as I write.

Please pray for Jennifer. Therapy, dr. appointments, coordinating care for the kids during these sessions, coordinating information amongst several different doctors is nearly a full-time job. Meanwhile, she desperately wants to be actively involved with the summer-time activies of Jacob and Jensen. Energy and strength are at a premium these days.

By the way, JG's been putting on the weight the last couple weeks. As of this morning, she's north of 12 lbs for the first time in her little life.


Tuesday, June 21, 2011

Tooth Fairy Scheduled to Arrive

The Tooth Fairy will be visiting the house tonight as Jacob proudly helped his tooth make its final exit. He's quite willing to show off his gap to anybody that will pay attention!




On a completely unrelated note, Janie Grace has an important appointment with the GI doctor on Wednesday morning. We're to the point where we hope this will be the beginning of the process of moving to the G-tube (a port with direct access to her belly). The G-tube should be a more permanent and less-nerve wracking form of sustaining JG with nutrition. Clearly, the tube through her nostril is more problematic as she gets more and more curious and active. She's back to wearing mittens and we're having to change her tape far more frequently. Furthermore, the current tube was never intended to be utilized for this long a time period.


Never thought we'd be ready for a minor surgery to install such a device, but, at this point, it appears our best option until Janie can completely sustain herself via oral feeding.

Friday, June 17, 2011

June 17, 2011

A few notables from the week at the beach...



Jennifer got some great snuggles with Janie Grace this week during nap time.






The girls in matching t-shirts made JG really smile.




Jacob has a very loose tooth he's proud of (Blake & Brooks each lost a tooth while in Ocean Isle).





Janie with no tape on her face...surprise!!?? Friday morning she woke up having pulled the tube out of her nose. Fortunately, with the help of Donna (we met her halfway between Ocean Isle and GSO), Jennifer got JG to Brenner by 1:15 and was home by 4:30 with a new tube inserted. This is as a good an outcome as we could have hoped for in light of the circumstance. However, unfortunately, that meant that Jennifer & Janie G's beach week came to a screeching halt. Never a dull moment!


Wednesday, June 15, 2011

June 15, 2011

On the way to Ocean Isle, we ate at the Ivanhoe's of Laurel Hill, NC. Folks that have been to Upland, IN will get the gist. We recommend it to folks headed to the beach.


Funny story, while eating we discovered that Jensen had "forgotten" to put on an undergarment while getting dressed that morning. She was free to the world! She didn't seem too bothered by it.

Obviously, the kids are having fun on the beach with friends. We also spent some time at this park one night. It was one of the better parks the kids haved visited.

Tuesday, June 7, 2011

Janie Update

We wanted to bring some news on Janie's recent developments:

1) She's up to a hefty 11 lbs. 3 oz.

2) JG's down to one prescription. (no more medication to keep her lungs dry!) The lone remaining medication is for her reflux. It's actually a different one that we hope will have better success controlling her reflux. It comes in pill form that dissolves in her mouth.

3) After today's cardiologist appt, she doesn't need to return to the cardiologist for three months.

4) She continues to be willing to have food go in her mouth (just not enough volume to sustain herself).

5) Janie rolls around the floor and has relatively good upper-body strength.


Areas of concern are as follows:


1) She's not made much progress with eating from her mouth. It's better than immediately after surgery but still far from what it needs to be. Jennifer as begun the process of working with feeding specialists at Chapel Hill. She was encouraged by her first visit. It was during that visit that the change was made to the reflux medication. Additionally, the therapist immediately noticed the acidic scent of Janie's breath despite the fact that she never spits anything up. Her belief is that Janie has silent reflux meaning that there is probably a constant presence of stomach acid in her throat.

2) Her lower body is still immature relative to being 6 months old. JG's torso, hips and legs have the development characteristics of a 1-month old.

3) An eye doctor visit is scheduled for July 7th so we're hopeful that her eyes are developing well.


Regardless of the concerns above, Janie's a delightfully pleasant 6-month old who's very content and easy-going. She loves her brother and sister based on the way she responds to them and we all get to see lots of smiles.


On a different note, we've been reminded of the blessing of health insurance this week as the bills from her surgery week have trickled in. Let's just say that you could come to NC and by a house similar to our home for the cost of her week. Dollars well-spent from our perspective!


I'm attaching a photo of Janie Grace at the pool. The feeding tube creates the need for a homemade fix with the help of tape and a plastic bag. It's a bit of process for Jennifer to get her in the pool.




Jennifer's Granny was recently in town for a visit.



Not sure what happended to Jacob's blue sunglasses.


Friday, June 3, 2011

Mr. Edwards' Day in Court

I'm off message here but will take literary license to deviate from the normal topics as it's not every day that I have a birds-eye view of history taking place while a former vice-presidential candidate is indicted just a block away. Downtown Winston Salem has been abuzz with camera crews and the constant rumbling of helicopters overhead.

In the photo, he's just pulled away in his vehicle (SUV at stop light with lights on) as the media is left behind. (Admittedly, it's a bit challenging to convey the scene with a blackberry camera.)