First Day of 1st Grade

Today was a big day for our family. With Jacob's kindergarten experience being at a church pre-school, Jacob's first day of 1st grade was more of the quintessential first day of school for him and all of us...public school, 500+ kids, lots of buses, etc.

As is so typical of Jacob, he's been counting down the days and has been genuinely excited for this moment to arrive. While there was a mild sense of apprehension as we walked the halls for the drop-off, he obliged a photo, walked right in, and gave a hug to his sweet teacher.

He's been less nervous about this day than his parents have been the last couple weeks. For me, I feel like this is a significant milestone on the road of parenthood. Yet again, we have to loosen the reigns and trust him to the care of the Lord and others. It’s easy to want to be a fly on the wall as he experiences so many new things all in one day...meeting new classmates (he doesn’t know anybody in 1st grade at this school), walking into the cafeteria for the first time, going to the little boys room and playing on the playground. What are his eyes going to see? What thoughts will run through his inquisitive brain? What emotions will he feel? It’s easy to want to be there for him to show him the ropes and give him a boost of confidence. Instead, we pray throughout the day and anxiously await whatever feedback he’ll provide to us tonight.

One big change for us this school year is that I get to take Jacob to school each morning as his start time and location lines up well with my commute to Winston. I’m looking forward to our mornings in the car together. Today I was getting peppered about my school “commutes” as a child. Jacob’s eyes lit up when I told him I rode my bike to school. For some reason, I’m guessing that he and I will have an early morning ride to school before the weather chills!

Jacob, some day when you’re reading this, please know how proud mama and I are of you today. You’ve taught us lots of life lessons in 6 years and you’re adding to the list with how you’re approaching another new situation.

Sweet Feet

Couldn't resist grabbing a pic of 10 cute toes last night after Janie G had fallen asleep.

Jensen & Janie G

Jensen cannot get enough of Janie Grace.

While Jensen is excited to start pre-school in a couple weeks, she's repeatedly told us that she doesn't want school to start because she'll miss Janie.

Tooth #2 Gone

Jacob has proudly lost his 2nd tooth. A 3rd is loose on the top row.

He's fascinated by whistling and has actually started to be able to do it moderately. However, this may stunt his progress. The whistling choir will need to wait.

Frig

Our kitchen is now complete! The frig that's been on back order far too long was installed early in the week. The cabinets and drawers have been reorganized and the new pantry/shelves have been put to good use.

We're really pleased and glad to have all the effort behind us!

Sweetness

Here's a pic that will you make smile!



Janie is doing well. After a couple weeks of being less active since the tube was put in, she's back to rolling all over to the point where we've got to get things out of her way and be mindful of the step into our sunroom (no more leaving her on our bed unattended either!). She's also back to eating her toes more frequently since her abdomen is less painful.



Her eating through a bottle continues to improve to the point where we rarely use her feeding tube during the day. We're not able to quite get the recommended amount into her during the day so we typically hook her up to the pump at night to get the last feeding into her during the first couple hours of her night. One of us gets up at night to turn off the pump and then she's typically hungry when she awakes in the morning.

It's easy to wonder if it was worth it to install the tube given how little we use it. However, the peace of mind it provides is invaluable and it allows us all to relax about feeding Janie as we know we can "top her off" each night with whatever we weren't able to orally feed her during the day. Plus, we'd be scrambling each day to feed her what is necessary to allow her to grow. I certainly believe that Janie senses the peace we have and it translates into better eating.

Given how much she's taking in through the bottle, her interest in solid food has slowed a bit, but she's still taking some. We're also giving her things that allow her to "munch" so that her mouth gets exercise. She likes those things so its fun to see her chewing.

Janie has started wearing a patch on her dominant eye a couple hours per day while we wait for the eye doctor to get her glasses. Even after she starts wearing the glasses, she'll still wear the patch each day.

Finally, at 8 months, we're doing our best to encourage her to sit. We've seen some improvement in her torso's strength but it seems she's got a ways to go before she'll be sitting. Janie doesn't care as she's satisfied rolling around and soaking up the activity around her with her curious eyes.

It's really nice to no longer have a tube in her nose. We all have a new-found freedom.

visit from Laura

Last weekend, we had the pleasure of a visit from Jennifer's good friend, Laura, who attended Taylor with us. Laura graciously came with the intent of helping Jennifer get things done that are often put on the back burner as a result of the many other tasks that pull her in a variety of directions.

We had a great visit, and by the time Laura was heading home after three productive days, Jennifer had crossed many items off of her to-do list.

Perhaps even more importantly, it was fun to think back on fun memories from years ago. We hope that the next time Laura is in Greensboro her sweet kids and husband are able to accompany her!

3 Kiddos

The kids were a riot last night before bed.

Thursday Afternoon

Good News! We walked out of the hospital around 3:30 and after a few errands got home around 5:00. It's certainly nice to be home.

Advanced Homecare has already been by with some of the supplies we need going forward.

Carrying Janie around the house without her pole is delightful! A kind high school friend of Jennifer's already dropped a meal by. We feel blessed.

Janie still hasn't done much in the way of filling her diaper but we were dismissed nonetheless.

She wasn't able to tolerate 3 oz at one time. It looks like we'll be doing 2 oz every three hours during the day and then run her pump at night while she sleeps. We really hoped to be at that point over the next few months so being there now is great! As her stomach expands, we'll build up to 3 oz at every feeding in hopes of not using the feeding pump at all during the night. We'll return to oral feedings tomorrow.

Here's a picture of our girl happy to be home.

For those following our kitchen progress, here's the newly installed pantry and shelving.

Wednesday Evening

Janie Grace continues to make some good progress. She's now completely unhooked from everything except her IV. This allows us to hold her with greater ease and we were even able to walk the halls a bit this evening as she was clearly sick of being in bed on her back.

Beginning this morning, Janie received a half-ounce of pedia-lyte through the new tube all at once. 3 hours later she received a half-ounce of formula. (By the way, Jennifer has reluctantly given up pumping as all hope of one-day nursing JG has been lost. I must say that 8 months of pumping is to be commended. Jennifer's been a champ.) 3 hours later she got an ounce, then 1.5 ounces and a few minutes ago she got 2 ounces. Essentially, the liquid goes immediately into her stomach. We pour the formula into a syringe and slowly let gravity do its thing.

We didn't know that we'd jump to this style of feeding so quickly. If she can handle it (as she's done so far), our days with the feeding pump may be done which would translate to some freedom for all of us that we haven't known since January! As I understand it, we need to work towards 6 feedings of 3 oz a piece. Beginning tomorrow, we'll once again offer food to her by mouth first and then use the tube for the balance. We'll also continue feeding her baby food as was started in recent weeks. I'm sure we'll ease back into that. Her stomach needs to be stretched as she's not accustom to so much volume over a short period of time.

Please pray she'd be able to do a good ol' #2 tonight or early tomorrow morning. She needs one of those before she can be shown the door. That's always a challenge for her anyway and the morphine doesn't help.

For the most part, she's been her rather content self. This afternoon, the experiment of pulling back on pain medicine clearly back-fired as she was quite uncomfortable for 30-45 minutes. The surgical stitches that hold the G-tube in place were removed. By the way, for those familiar with G-tubes we went right to what is called a "button". We've been given our first tutorial on cleaning, venting and feeding. We've both taken turns administering the past few feedings and are beginning to get the hang of it.

She didn't sleep very much at all today. Although it is very difficult with the all the activity in and out of the room. She finally fell asleep around 8:45 this evening.

We had the pleasure of a visit from Jacob and Jensen this afternoon. They got to see Janie, play in the Ronald McDonald House playroom here on the 8th floor and up at the rooftop park. We're so fortunate that Donna (Jennifer's mom) is able and willing to basically drop most everything and care for the kids during these hospitalizations. It allows us to be with Janie and have no concern for their well-being while we're away from them.

I've included a picture below of her belly showing her new arrangement. The band-aid on her belly button is due to the surgeon actually using that as the entry point for the surgery. (Don't ask me to explain anything else about how this thing got installed.)

Wednesday Morning Update

It seems that Jennifer and JG had a pretty good night. Janie rested well and is asleep again as I write. (Friends of Tracy & Zack, Ryan & Anna, live very near the hospital and are graciously letting me sleep there so that I can be close to the hospital.) It seems Jennifer was able to get some rest as well.

The doctors were pleased with the progress they observed this morning. Janie certainly looked like herself to me this morning when I first saw her. It's still easy to have a moment of fright when we see her tape-free as we'd been conditioned to know that was a bad thing the past 6 months. I can still feel myself reaching for her hands every time I see her hands up near her nose. In a good way, that will take some getting use to!

2:30 update

Got up to room 832 around 2:00.

Janie's definitely struggling to come off of the anesthesia and is clearly in pain. A girl that rarely cries is showing us what her "I'm hurting" cry sounds like.

That said, with a little music and some singing she gets calmed down. (Morphine doesn't hurt either).

It's really fun to be able to look at her sweet face free of tape & tube and not be worried about rushing to the ER or to Krista to drop the tube again! Those that remember Jacob and Jensen at this age will probably join us in agreeing that she looks just like them in the photo below.

12:50 update

Already met with the doctor and she's done! He's pleased with the success and said she did well. We should see her by 2:00. Tomorrow morning we'll start giving her formula through her tube and hope that her belly accepts it just as it has been (just through a different tube!). The surgeon hopes we'll leave Thursday but we know to add a day to their "hope". Cannot believe it went so fast!

Thanks for your prayers. Please pray for her recovery and that her body would accept this new set-up.

Hospital Drop Off

Janie's having her G-tube put directly into her belly this morning.

We arrived at the hospital at 10:05 and finally handed her over at 11:45. The procedure in the room ahead of Janie took longer than expected. By about 12:15, she was prepped for the surgery. We expect to see her again by around 2:00 and should hear about the success of the surgery by 1:15.

As usual, she was a doll and took a nap on Jennifer for 30 minutes while we waited. We're anxious to hold her again and feel confident.

A Jensen-ism

Jensen has this great line which is uniquely her that I hope she never stops using but I know it's only a matter of time.

Jensen: "Dad, do you know this?"

Translation: "Dad, do you know what?"

It may not be that interesting until you hear it for the 12th time in a day with her cute raspy voice!

Nonetheless, I got a good smile this evening when for the 583rd time Jensen started a statement with, "Dad, do you know this?" and finished with " I had fun at art camp today. It's the funnest."

Surgery Confirmation

We (Jennifer in particular) haven't felt a real peace about tomorrow's surgery. For one, while we knew it was approaching, a Thursday to Tuesday turnaround hasn't allowed much time for mental/emotional preparation. Secondly, there's been this lingering question in our minds of how Janie would do if we removed all feeding devices and made her fend for herself (with our careful assistance and observation obviously). Would her desperation kick-start a significant step in the right direction?

Janie Grace shows continued ability to be fed orally. It's messy and slow, but she can do it and appears to enjoy eating. That said, she's only getting a fraction of her nutrition orally. There is probably only one point during the day (if at all) that she feels hunger...the final moments before hooking her back up to the feeding pump after being off of it for several hours. What would happen if she felt hungry more often and was forced to practice eating? How will the absence of a tube down her throat for the first time in 6 months impact her eating? All of these thoughts race through our minds. Realistically, we know that it's very unlikely that she could improve as quickly as we'd need her to. Plus, during these very important months of development, we need her to be strong with all the help she can get. Nonetheless, the questions linger.

Last night at 9:00, Jennifer communicated that she needed some confirmation today (Monday) that putting JG into surgery was the right decision. We agreed that she'd contact our pediatrician, a lady that's been following Janie since birth via one of the governmental programs ("L"), and one of Jennifer's contacts through the local Down Syndrome network. L immediately called first thing this morning (she's wonderful to us) and had already spoken with their agency's dietitian. (I should mention quickly that we're more concerned about Janie's consumption of liquids than solids.) The amount of fluid alone Janie would need at this point is completely overwhelming, so we basically had the answer we needed.

However, the Lord's willingness and ability to answer prayer in the most obvious of ways was far from over.

The kids are each doing a camp for the first time this week (Jacob - basketball, Jensen - art). Jennifer was running some errands and stopped by the eye doctor to check on the status of JG's glasses and to look at a couple more frames that had been specially ordered for Jennifer to look at (the eye doctor is good to us as well). After getting to the parking lot of the eye doctor, Jennifer ended up on the telephone returning a few calls which took a little longer than expected. However, she'd soon learn why she needed to be on the phone those extra minutes.

Let me back up, let's be honest. Janie draws attention. Most babies do, but the tube coming out of her nose gets plenty of 2nd glances and warm comments. Once in a while, a stranger will share that a child they know required the same get-up.

Today, Jennifer had another such interaction as she walked into the eye doctor office 15-20 minutes after pulling into the parking lot. The mother of a 4-year-old son looked at Janie and said, "an NG tube...I remember those days." Jennifer, sensing what the Lord was up to and with already wet eyes, quickly told the woman that JG's scheduled for G-tube surgery in the morning. Before the woman could finish saying, "Oh! you're going to love the G-tube", Jennifer's face was flush with tears. She told the fellow mother, "we were suppose to run into each other." They spent the next few moments comparing stories as the Lord finished answering prayer.

There's no doubt their "chance" meeting had been divinely orchestrated and was clearly the tool used by the Lord to ease the heart and soul of a mother that had no peace about tomorrow's activities. Being under the hand of the Father is a powerfully peaceful place to live when we trust in His his ability to meet our needs.