Day 9

Home!!!!

Yes, it's true. We're all under one roof again tonight. Routine is an immediate pleasure. Jennifer and I got home with JG at around 6:00. Over the course of the next 15 minutes, each kid was dropped off individually by a different friend as well as an outstanding home-cooked meal that reminded me of a dish my mom and grandma served growing up. Jacob was immediately shooting hoops, Jensen was playing with her dollhouse and it felt good to all be within ear-shot of one another.

A minute before it was time to leave the hospital I caught this smile from Janie Grace. Apparently, Jennifer and I weren't the only ones ready to be home!

Today's hospital activities included removal of JG's stitches where her drains were placed (the wound's three layers of stitches will dissolve). Surprisingly, they got some blood from her heel for the 2nd straight day. They heated her feet for a long time each day and got enough to do most of the tests they wanted. The reason for the 2nd blood draw was an elevated Thyroid level on Tuesday. Kids with Down Syndrome are pre-disposed to thyroid issues and coming out of major surgery can be a trigger point. Fortunately, for now, her thyroid has been ruled as stable. That will be something that she routinely has checked throughout her life. Also, they got us set up with a heart monitor that she'll wear for 48 hours at home in order to see if she has an abnormal heart rhythm that they were getting contradicting information on in the hospital (the monitor is no more a nuisance than the feeding tube). Strangely, they can monitor it remotely so I guess it's bouncing off of a satellite! It's not unusual for the doctors to detect an abnormal rhythm coming out of surgery but they want to establish a baseline as then begin to track it. Over time it could go away or be treated with medicine. At this point, there isn't much reason for concern. Lastly, the final ultrasounds on her heart over the last couple days showed no reason for concern as the small amount of fluid around her heart is not progressive.

This next picture is of Janie catching a digital vibe today. At this point she was probably listening to Five for Fighting's song "100 Years". Oddly, Janie loves that song and has (on multiple occasions) immediately calmed down after hearing just a couple measures when all worked up.

Finally, Dr. U (the heart surgeon) obliged Jennifer's request for a picture (or 15) with Janie Grace this afternoon. We've often asked ourselves the last week, "what do we say to the man who's skilled hands and brilliant mind basically saved our daughter's life in order to properly demonstrate our appreciation?" We have to trust that our tears of joy post-surgery and again today from Jennifer are adequate. From where I sit, he certainly deserves every penny United Healthcare is going to pay him! All kidding aside, besides his expertise, we appreciated the sensitivity he showed to us and the obvious care and concern he shows his patients as these pics illustrate. (We also acknowledge that supporting his success is a team of talented individuals who don't get the noteriety of a primary surgeon but that are nearly as important.)

I made it all the way through this post with no mention of JG's eating...we'll save that for another day.

Finally, this will mark the formal end of my daily Janie G updates. There's something to this whole blogging thing. I may have to keep it going, but it'll probably morph into something focused on the lives of all three kids and the crazy & cute things they say and do. For example, Jensen told Jennifer tonight that she wants Jennifer to be a stuffed animal pet so that Jennifer will snuggle with her all night long. (Maybe a blog will allow Jennifer to send 120 pictures out/month via Kodakgallery instead of 150.) Whatever the case, I would imagine that if you check back in a week, there will probably have been a post or two...just not 3/day!

In all seriousness, we recognize that this has ended up being a tool that has allowed hundreds of people to pray for our family the past 9 days. We're humbled by the support we've received and the prayers that have been lifted by people we'll never meet. Simply...Thank You!

Day 8, 10:30 PM

We arranged for Jennifer to see the kids over dinner tonight which was fun for three of them. Jennifer really needed that time with them. I was able to spend a couple hours with Janie Grace as I'd spent most of the day back at work. She was smiling a ton tonight which is a great reminder of how worth-while all of this is and also a nice reminder that she'll never remember any of this past week.

By the time I was with her, she hadn't eaten for nearly 6 hours (the doctors decided to do 18 on and 6 off). I had the most success spoon feeding her. I probably got about a half-ounce in her after factoring the quantity lost down her cheeks & chin. Strangely, I had the most success when her fingers were in her mouth. The girl loves her fingers. She's never been able to secure a pacifier in her mouth, but her fingers soothe her like nothing else. Like our friend Ginger said, "if only we could attach a straw to her hand somehow!" I had the same thought this evening. You see, the motion we all take for granted is only evident for her when her fingers are in her mouth. It gave me some hope seeing that her mouth can make the correct motion. We just have to figure out how to get her do it with far greater efficiency. It was a little glimmer of hope that I needed today.

We're hoping that Wednesday is our day to all be home again. That'll be fun.

Day 8, 1:00 PM

I know it's hard to imagine (it's even a little strange for me to admit this) but Jennifer and I probably had more anxiety about nutrition and feeding post-surgery than the actual heart surgery itself. We had so much confidence in the doctors, believed it would be repaired once and for all, and she'd move forward (just as she's done/doing). Feeding a child, on the other hand, is a daily (hourly) grind when that child is not excited to eat orally. To that end, I probably sound like a broken record by continuing to focus on it with these updates.

Nonetheless, today's update is once again feeding related (trust me, we're glad to not be sending out updates on heart complications)...So as I explained, the tube ended up "tp" (in her intestine) on accident. (We've had to reconcile in our minds that the Lord's hand put it there for a good reason). As we surmised, the doctors won't allow her to receive high volumes in a short period of time directly to her intestine. Therefore, we need to go back on slower continuous feeds, or, basically, to where we were a week ago when we turned off the tube. She'll get what she needs over 20 hours with a 4 hour break at which time we'll hope/pray/try to feed her by mouth with a bottle/sippy cup/spoon etc. Honestly, this is terribly defeating as it's really hard to imagine Janie getting desperate for food during those 4 hours given her compliant nature. But we need to pray that as she gets bigger, stronger, older and further removed from surgery that the light bulb will go off on how to suck/swallow.

Like us, you're probably asking "why don't the doctors just pull the tube back into her belly like we thought was happening on Saturday night?" We asked and this is where you start to see that medicine is not cut and dry. Doctors have different opinions on what is safest and best for a 4.5-month-old. While the doctor over the weekend was willing to try a tube to the stomach given there was time for observation, the doctors currently on the floor have greater concerns about refluxing (and fluids ending up in the lungs) and the possibility of a stomach tube migrating up her esophagus and dumping directly into lungs (real bad). Certainly, these are notable concerns and not hard to disagree with. However, barring a miracle of her eating orally, it certainly seems like this is a more temporary band-aid than where we felt we were over the weekend with her stomach (supposedly) showing signs of progress. You see, in the background of all this discussion, is our knowing that the final solution, barring a miracle/slow improvement with her oral eating, would be a surgically-inserted tube directly to her belly. We'd certainly like to avoid that, but an active toddler cannot live with a tube in their nostril indefinitely.

I keep promising Janie that I'll grill her a steak every night the rest of her life if she'll just start eating through her mouth.

Naturally (with sarcasm rolling off my tongue), given a modified feeding regiment, they want to observe her again, so we're hoping that Wednesday becomes departure day. Jennifer basically told the doctor "we're leaving tomorrow (Wed.) unless there's an infection and you can prove to me that I'm putting my child in danger". Pray for Jennifer...she's more than ready for home as she's been at Brenner since last Monday afternoon. When we were originally told 5-7 days, 9 days feels long. Pray that nothing else pops up that would make them want to keep JG in the hospital for observation beyond Wednesday. Given our past experiences, you don't feel like you're out until you drive off of the campus as there can be so many prohibiting factors.

Day 7, 11:15 PM

It's crazy to think that just a week ago we were preparing for an anxious night of sleep before an early wake up to walk JG over for her heart surgery. It's been some week. Thanks for the many kind expressions we've rec'd and the many prayers we've felt.

It's been an odd day. Jennifer stayed with JG at the hospital after deciding it was best for me (Jason) to come home and try to give Jacob and Jensen some sort of normalcy. I love those two and being with them is a breath of fresh air. We can only hope that 24 hours from now we'll all be under one roof. I also need to return to the responsibilites of work in some capacity beyond what I've done via blackberry, voicemail and e-mail this past week.

I should take this time to mention that Jacob and Jensen have been troopers. While well cared for, they've exhibited maturity beyond their years with their willingness to be shuttled around to 4 different houses the last week and taking each move in stride. Of course, the owners of those 4 houses love them dearly and we're thankful. Nonetheless, we recognize that not all kids would roll with it like those two have. We continue to trust that the Lord will use these experiences for His good in their lives.

We'll continue to rely on good friends and family to fill in the gaps with helping care for J & J as plans are in place for them on Tuesday and Wednesday. We had dinner with friends, I had groceries come to our door tonight, walked into a clean home, the grass was mowed, and Jacob's lunch will meet him at school tomorrow. We appreciate the way our friends and family are assisting during these challenging days. It's humbling to be on the receiving end of generosity, but we're learning to just say "yes" (tough as it might be).

So back to our odd day....As mentioned, Janie G's temp dropped last night (Sunday night), so they wanted her blood which we she didn't give up as usual (even to the most highly trained nurses). Therefore, they cannot do blood tests to determine any infection etc. Instead, they are relying on old-fashioned observation which takes time (hence, Jennifer and JG remain at the hospital). JG's EKG appears fine, her heart rate and oxygen levels are good, her blood pressure has been normal and her heart echo looked "pretty good" in the words of the cardiologist. There is still some fluid around the heart that is not unexpected after surgery and the right side of her heart isn't completetly up to speed but that too is not a surprise. The left side of the heart, which is a little small right now, is actually working really well which is important as that is the side that pumps blood to the body (the right side sends blood to the lungs). Therefore, we continue to get good news about her heart's condition. If we can get that low-temp up or at least give no other reason for concern, we'd probably be stamping our passport home.

The plot thickened late this afternoon (you really won't believe this) when I got a call from Jennifer. A chest x-ray had been done on JG as a surgical follow-up measure this morning. While I was packing up the car with my stuff and cleaning up our room at the Ronald McDonald house, one of the residents had come in the room and asked Jennifer how we were feeding JG. She explained about the bottles and then the express feeding to her stomach. He said to her "you mean her intestine, right?". Jennifer said, "no, she used to be fed 'tp' (to her intestine) but now it's to her stomach". The doctor said, "then why is her tube in her intestine?". Essentially, his read of the film was that somehow the tube had ended up in her intestine rather than her stomach. I don't have time to run you through the conversation that Jennifer and I had. However, if that's the case, our excitement over her stomach tolerating these feeds isn't warranted because her stomach isn't doing anything at all. Not good. Now, you may be wondering what the big deal is. I'll explain. The ironic twist to this is that the first time JG got her tp tube in (going to her intestine), it took 3 x-rays to make sure it was lodged in the right place. When it was reset after an upper GI, it took the doctors 15 minutes using live x-ray to get it placed right. Four Sundays ago, I spent 7 hours in the ER with JG trying to get it re-set correctly over and over again after it accidentally came out. Now, when we want to try it in the stomach it accidentally ends up in the intestine. You've got to be kidding me, right? I wish this was a joke. Therefore, now we're left to wonder what long-term impact could be had by keeping her stomach inactive or we pull the tube back so that it dumps in her belly and we spend more time at Brenner while they observe feeds into the belly. Here we thought the last rollercoaster loop was behind us!

All this said, we're not exactly sure what Tuesday holds.

Relative to JG's feeding, we were advised by a speech therapist that we may never get a bottle in JG as the suck reflex is typically present for months 1-3 of life. Since we werent' feeding JG for so long, she may have lost it. She may have to graduate to a sippy cup or spoon feeds rather quickly. Bottom line: There's going to need to be lots of therapy for JG's eating pending a miracle.

Jennifer reports that she and JG had a nice evening together at the hospital.

Day 7, 9:15 AM

10:15 AM

My editor clarified what was lost in translation over the phone first thing this morning... Here's a more accurate update...

Janie had a low temperature this morning (96-97 degrees), not a low fever. Low temps can be a sign of infection so they'll draw some blood this AM to make sure all is okay. She doesn't give blood well so pray she's able to do a better job than in the past. She was also sweaty/clammy overnight and at times had low blood pressure. Nobody seems very concerned as these are somewhat normal responses but need to be monitored nonetheless.

If I haven't been clear, JG is basically eating nothing from her bottles and 95% of her nutrution is coming through her tube so pray for a miracle there over the coming weeks. Also, when I say that she's tolerating her feeds, I'm meaning that she's not spitting up. However, as the final portion of her feeding is being expressed into her, she's often showing signs of being in pain (last night she was upset for 45 minutes during her 3:00 AM feeding). This is probably because she feels very full and cannot clean herself out as quickly as she'd like to be able to.

9:15 AM

Janie Grace ran a low-grade fever over night which is not abnormal according to the doctors as her body continues to adjust/stabilize from surgery. Unfortunately, that means that our departure date will probably be pushed back as we'd hoped that today might be the big day. Besides something significant, a fever was probably the only thing that would have kept us here given that she continues to tolerate her feedings every 3 hours. Maybe if the fever drops this morning, we'll still have a chance (please pray this is the case). In a previous hosital stay, we had a departure postponed due to a fever, so it's not surprising to us but still a bit disappointing.

She'll have some follow-up things done today (1) chest x-ray, (2) echo cardiogram and (3) probably a visit from the speech therapists that will track her eating ability.

Day 6, 6:00 PM

We got a visit from the Easter Bunny this afternoon. Even better was a visit from Tracy & Zack who brought a wonderful meal that we shared on the patio outside on the 12th floor of this building. It was a beautiful afternoon. Thanks to Pastor Ken for a surprise visit as well.

Day 6, 11:30 AM

So yesterday at noon, Janie Grace's IV was turned completely off to make her uncomfortably hungry and thirsty if necessary. We hoped to see some progress from the bottle. She took some sips that would have been equivalent to us leaning over the drinking fountain for a second or two, but didn't show much interest. Nonetheless, she remained pleasant and compliant for the most part. We continued to try every 2.5 hours but with little success.

As a result, the decision was made to insert a tube into her stomach yesterday (Saturday)evening. She immediately went onto a regiment of 2.3 ounces every 3 hours. We offer the bottle first and express her the remainder immediately thereafter so that she gets everything over the course of 30-60 minutes. One tricky component to this that will require some juggling is that her bottle feeds are thickened but her tube feeds cannot be. Therefore, unfortunately, Jennifer won't be able to just pour the leftover balance from the bottle into the bag. It will require running a dual path with preparation of her food. In many respects, we'll have a newborn again at home. However, with the feeding tube, we'll get her nighttime feeds prepared before bed and set alarms for 3-hour intervals without need to wake a sleeping baby as she tends to rest well at night.

Janie's feeding is quite challenging as she's a moving target (head is constantly moving) and her tongue lacks coordination. Please pray that improves.

The fact that JG is responding to these tube feeds so well thus far is an answer to prayer. Earlier in life she tended to gag and reflux quite a bit. While she's clearly uncomfortable by the time she's done being fed (her stomach probably feels like it's getting Thanksgiving dinner every 3 hours), the fact that she's holding down her food is an excellent sign. Please pray that her stomach learns to handle more than she's accustom to.

She is now completely off of her oxygen supplement via her nose. Therefore, all necessary precautions for her heart are off! We are suddenly quite mobile when she's not being fed. We can walk the halls and may spend some time on the roof top terrace this afternoon as it's a gorgeous Easter Sunday in NC.

The h-word has been mentioned for tomorrow (Monday). We're hopeful but will still plan on Tuesday. With it being a holiday weekend, some of the final in-hospital appts cannot happen until tomorrow. Tolerating her feeds and being off the oxygen are critical. Now, they'll want to see some weight gain and make sure she's able to fill her diapers. Pray for her ability to relieve herself without the need for a suppository.

Finally, yesterday's visit with Jacob & Jensen was priceless. We got to play in the roof-top park, eat a snack in the cafeteria, watch the Bulls almost beat the Pacers in a furious finish, and color Easter pictures for JG's room. It was fun to talk with them in person and it seemed they had each grown 6 inches in the past week.

Picture #1 is still with oxygen but no feeding tube yet.
Picture #2 is with feed tube but no need for other attachments.
Pictures #3-#5 require little explanation.

Day 5, 12:15 PM

Our rollercoaster rides the rails of certainty (or uncertainty) and our spirits are the caboose following in lock-step. Last night was a low point as we dealt with a child who was clearly ill from her inability to rid her body of her stool (probably the result of all the drugs she's been given this week). We've never seen her in pain for such a long period of time. At this point, her ability to sustain herself with nutrition is our ticket home and anything that thwarts our progress is dibilitating as it casts a cloud over our coming days. JG was beside herself last night and that is difficult to observe whether in a hospital or the comfort of home.

After 12:30 AM, Janie rested pretty well last night until 6:30 with Jennifer joining her in the room. This morning she continued to be mildly fussy and started to cry everytime I got near her with a bottle! (We have to laugh about it!) After a bath and a brief nap, she woke up looking and acting like herself (bright eyes, beautiful complexion) and was willing to give the bottle a try again as she feels much better. She got 1 oz, so it's a work-in-process. The attending cardiologist wants to give feeding a try for one more day (today) and see how she does. A feeding tube would be inserted through a nostril tomorrow if we don't see measurable progress. At this point, they're talking about a tube to her stomach. This is attrative from the standpoint that we can be taught to feed the tube into her belly ourselves should it come out or we could have a nurse friend (Krista K.) on speed-dial without worry of having it set in the intestine (as was the case pre-surgery) with need for radiology confirmation. The doctors have assured us that the tube shouldn't be viewed as failure by Janie or her parents. Kids that were eating well pre-surgery sometimes need a tube in the weeks after surgery. They reminded us that her interest in food and tolerance of it is progress and her body may need time to grow accustom to the volume she requires. It's hard for us not to question at times...could we have done something differently or better that would have allowed eating to be less difficult? It's nice to not be made to feel guilty as we certainly inflict some self-guilt at times.

The tube is both friend and foe. The friend provides certainty that she's getting what she needs and allows her medicinces to be easily administerd (right now most of them are going in by mouth which takes some work). The foe is delibitating as it makes us nearly immobile with JG. However, as an alternative to uncertainty, we reluctantly accept it and give thanks for a tool that helps as it's unpleasant to think of the alternative. We're hoping to graduate from continuous feeds to a regiment that woul allow us to try the bottle and quickly express what she doesn't get via the tube to more closely resemble the dining habits of the rest of us. This would improve flexibility as she could be away from the pump more often.

I hope you can tell that 0ur spirts are a bit better today as she shows a willingness to try eating again even if it's a fraction of what she needs to grow. Plus, JG is acting like herself which is sort of crazy because she shouldn't be acting happy while getting so little nutrition (you and I wouldn't be!).

One thing that's been encouraging us throughout the week are daily updates we read and watch about a revival taking place in Flint, Michigan this week. I would encourage you to check out http://www.reviveflint.com/. The Lord is at work there and you'll be encouraged to learn about what is happening on this Easter weekend. The daily video summaries are powerful. It's a reminder that life is bigger than the 4 walls that surround us at Brenner.

To further raise our spirts, we look forward to an afternoon visit with the kids. There's an outdoor playground on the roof. Janie is now mobile enough to potentially join us outside or atleast take some laps around the hall. She has a trace amount of oxygen running to her nose still but has been permitted to be unhooked from the monitor and other wires, so she's relatively mobile (further confirmation that her heart surgry recovery is going unbelievably well). The surgeon cleaned up the bandage that had taken a turn for the worse during last night's outbursts so her wound looks so much better.

Since you probably just skimmed the last 4 paragraphs rather than read my ramblings...here's what you wanted.

Day 4, 11:00 PM

So we transferred from the PICU to the floor at around 5:30 tonight. This afternoon wasn't particular easy as JG had a big spit-up after the lines to her neck and thigh were removed which caused her much discomfort to the point of upsetting her stomach. She wasn't very interested in eating from bottles the 2nd half of today, so they've bumped up her IV this evening in order to make sure she has enough liquids.

I'm sure our nurse on the floor tonight is wondering why the PICU permitted her to come over as she's been pretty miserable all evening. For those that know Janie well, you know that she really doesn't get upset unless there's a legitimate reason. Often, that good reason is related to being unable to fill her diaper with ol' #2. Tonight has been 3-4 hours of trying to clean out the pipes with the nurse using every tool available to her but only minor success. It's 11:15 and she's now been content for 10 minutes. We're not really sure why she's so backed up as that wasn't a problem until today. Oops, spoke to soon. Unfortunately, she's been straining so much that she's causing herself to bleed from some of her incision points (hence, no picture tonight). We were told this would be a roller coaster ride! Hopefully she can get some rest here soon and us as well.

Day 4, 2:00 PM

Janie G had another peaceful night of rest. She'd been sleeping really well at night in recent weeks. So far...she hasn't forgotten!

She did pretty well with her first 2 bottles of the day at 7:30 and 11:30 getting close to 2 oz/feeding. She really needs 4 oz every 3 hours. At home, she was getting 16 oz/day round the clock. Please boldly petition the Lord that Janie would do that. It's only going to happen through Him. As I mentioned above, JG likes to sleep at night (don't we all!), so she has to get her nutrition during the day. 4 oz every 3 hours or 16 oz while she's awake from 7:00 AM to 10:00 PM.

We're seeing evidence of answered prayer relative to her eating...(1) she is willing to have the bottle and food in her mouth, (2) she's not spitting anything up (that's big), (3) she's not choking on her food (4) her stomach appears to be processing the intake. These are all things we wondered about given that her mouth and stomach were so out of practice...minor miracles in and of themselves, but I've never willed food into somebody like I do when Janie is working on a bottle.

We should be out of the PICU and onto the "floor" by supper time since she's doing so well. All of her drains are out, blood pressure medications are off, and she'll be down to one IV by the end of the afternoon. The IV on her right hand is out so she now has access to both hands! (see pic below) We see continued evidence of how well her body is responding to open heart surgery just 4 days ago.

I've debated saying what I'm about to say for the last 30 minutes, but I guess I should say it so that your prayers can be directed to our biggest needs...Simply, Jennifer and I are tired and beyond ready for some level of normalcy at home. We're elated at Janie's progress, but it doesn't change the burden in our souls to be at home with J, J, and J. Our hospitalization has been nothing compared to so many others that line the halls here at Brenner, but it doesn't change the longing to shoot hoops with Jacob, read a book to Jensen, or even to have to ask Jensen to be gentle with JG for the 101st time in a day. We love JG beyond measure but our love is split equally for Jacob and Jensen and we don't get to parent them right now like we want to. It's really hard. Our physical needs are met and Jacob and Jensen are well cared for, but the thought of the 5 of us sitting around the table for dinner tonight and hearing about Jacob and Jensen's days sounds better than a Disney World vacation. I don't want you to do anything for us and I don't want you to feel sorry for us. We gladly play the cards we've been dealt, but it's not always fun to play a losing hand. I guess I just want you to know that despite our mostly positive updates, our hearts ache to be "normal" again at home....and I want some Wild Draw Fours .

The doctors think that she'll be ready for home on Monday as it relates to her heart. It's her eating that is the wildcard. That's why you hear my desperation around her feeding with each update.

Day 3, 6:00 PM

Below is a picture of Janie being held by Jennifer for the first time post-surgery. It's a bit of an ordeal getting her moved just 2 feet from bed to chair, but well worth it in the end.

She's now had three attempts at bottles. It's a lot of work. Her tongue lacks coordination. Most importantly, she's showing some interest. However, please continue to pray that this improves. We don't expect it to be easy but a measure of certainty that she can do it with some concentration and help sure would be great. By way of background, prior to inserting the feeding tube at the end of January, Janie had figured how to eat from the bottle pretty well but she wasn't strong enough to get enough to grow (she was also burning significant sums of calories as a result of her heart). Hopefully, with the some practice again coupled with being stronger and larger plus not losing calories to an inefficient heart , she'll be able to get this figured out and grow.

Day 3, 1:00

So amidst the uncertainty and stess of a PICU, there have to be some smiles now and again. To help with that, Jennifer's sister (Tracy) and some girlfriends from church have come to see Janie and be a familiar face to us.

However, I personally got a good laugh this morning. Unfortunately, my laugh was at Jennifer's expense (but she laughed about it too). I'll explain...

We were told a visitor from church was in the waiting room. Not sure who it was as we hadn't had a call, Jennifer went to the door and immediately was a part of a large embrace. Let me pause here to mention that with Jennifer's dad being a pastor, it's quite possible that somebody could come by for a visit that may "know" us well but isn't a familiar face to us. As Jennifer and this woman separated from their embrace, the guest quickly asked, "how are Steve and Brenda doing?". Jennifer hesitated, caught the eye of the nurse who was still standing there a bit puzzled, started to question the woman she just hugged when the administrator near the door put it together and said, "you must be looking for the Hutchinsons". Jennifer had hugged back just assuming it was somebody from church she'd never met. Can you say AWKWARD moment? As usual, Jennifer laughed it off but felt a bit strange walking past the Hutchinson room on her way to the bathroom. I thought it was pretty funny.

Day 3, 12:30

Good news! Janie had her first bottle of thickened pedialyte. We were real pleased with how well she did. It wasn't very coordinated but she certainly was retaining some of it and worked on the bottle until it was gone. We should be allowed to start bottles with Jennifer's milk later today. Dr. U, in particular, is very interested in allowing her to try the bottle as long as possible before resorting to the tube. His exact words were "I'd like to avoid a step backward". Therefore, we should be given some time to give this a go. Here's a picture of her eating...

Day 3, 8:45 AM

Seeing JG this morning immediately indicated to us that she's feeling better as her eyes look more and more like the ones we know. Janie's certainly found her fingers again although her right hand isn't available to her (IV is attached) which is frustating to her (she loves to suck on it in lieu of a pacifier).

We were told that she rested well last night and has been weened off of some of her medications.

The central drainage line from her heart used to get rid of fluid around her heart was taken out this morning after the doctors made their rounds on the floor (two remain that are closer to her lungs). Janie Grace is also getting a much-needed and well-deserved bath. Today's going to be a little more challenging from the standpoint that she's very alert and wanting to move around yet she's still hooked up to plenty of sensors, lines etc.

She should be fed this morning for the first time since surgery via a bottle. Janie's been fed continuously through a tube since the end of January so we're anxiously optimistic that she'll be able to receive some nutrition (and hopefully all) through a bottle going forward.

Feedback this morning is that she'll probably stay in the PICU until Friday. Everybody is very excited about her recovery, but as the attending doctor of the PICU said this morning, "little babies make me nervous".

You'll notice a big difference here in these two pics...one from last night, the next from this morning after a bath with a few less tubes!

Day 2, 11:00 PM

I know my rabid audience was clamouring for another post yesterday, but I was WIPED OUT last night. Therefore, the headline above is a lie...it's really 7:30 on Thursday morning.

The main reason for no update was the fact that there was little to update other than to say that she continues to progress very well which in itself is a GREAT update!

The biggest news from the 2nd half of Wednesday would be to say that it seems likely she'll be out of PICU by the end of Thursday which would be further evidence of the same story that she's progressing well.

Since you really only hit the refresh button on your browser in order to see another pic of Janie G, I'll oblige...gladly.

Day 2, 3:00

Nothing new of substance to report. Janie Grace did find a finger to soothe her since her own are a bit more difficult to find and use at this point.

Day 2, 12:15

So the breathing tube is out and she's doing well on her own! She's getting a little bit of oxygen through her nostrils to supplement her breathing a bit. She's definitely still agitaged and wigglin' around, so the most challenging task for the nurses is to keep her comfortable and still. There are still several critical tubes and wires that would cause problems if they were removed in the wrong way. Lots of gentle moans that come at a regular cadence to remind us that she's not very pleased with us. Her eyes are still closed 99% of the time as she's still getting some pain and sedation meds. Here's a picture of her breathing tube-free and a 2nd picture to give an appreciation for all the apparatus (or is it apparati) that is keeping her going. The final picture is of a now very relaxed Janie.

By the way, the sweet housekeeper that we recognize from our prevoius stays agreed that she's a little angel lying there, so I'm in good company!

Day 2, 10:30 AM

We were tickled to see Janie this morning and to learn that she'd had a good night. On several occasions yesterday, we were advised that she could "nadir" (to use the doctors' words) about 8 - 12 hours after surgery which would have been around midnight last night. As expected, a couple indicators did trail off (amount of urine being one), but overall she didn't drop off to the extent they might have expected (great news!). She also did run a fever for a brief time (once again not a surprise) and that too has come back down. Therefore, Night 1 was about as ideal as we could have hoped for! (As an added bonus, Jennifer and I both rested quite a bit better last night than we did Monday night.)


One advantage of this being a teaching hospital is that the attending doctors are always walking medical students and residents through decisions and items they're observing. As parents, we're always invited to participate in these hallway teaching moments so we are able to listen to both the bedside feedback we get and the medical-speak of the professionals. As a numbers guy, I'm not gifted medically in any way, but it's fascinating to ask questions and learn. I'll say it again, the giftedness of these brilliant doctors and nurses is a blessing to us.


Janie G continues to have moments of restlessness when her sedatives wear off. We've always said she's a fighter! If she's got just a trace of Jensen in her...she'll never sit still! However, so long as she's hooked up to all these wires and the breathing tube in particular, they'll need to keep her very calm. Therefore, she just lays there like an angel most of time. The good news is that they have begun the process of unhooking some lines/wires. 2 wires that were invasive near her heart/lungs (monitoring vitals from the inside) were removed about 8:15 this morning by the surgeon. It's a step in the right direction. As the nurse and doctors have said...less tubes mean we're closer to leaving the PICU (and closer to home!). We hope that the breathing tube will be removed this afternoon. At that point, we'll probably get more glimpses of the Janie we knew early Tuesday morning. I'm ready to see her eyes (for more than 2 seconds) and hear a babble. Today's first pic isn't too different than last night...but if you look closely you'll notice the bandage is off her incision (although covered by a cloth) and a couple small wires are gone. I hope the next pic you see has more noticeable change! GREAT NEWS...As I was finishing my final thoughts here...Jennifer called me (I'm down in the cafeteria...no food/drink in the PICU) to tell me the breathing tube is coming out!!! (Apparently she's been very restless. As her dad, I kind of like that she's sick of being uncomfortable. It tells me she's ready to be better. Of course, the nurses don't like it.) That next pic may come sooner than I thought and I've got to get back up there to see her!

8:45 PM

We've been very busy the last 4.5 hours and distracted by the chance to stare at JG!

There's a lot to update...

At 4:15, we were called back by our wonderful PICU nurse so that we could see Janie Grace. It was an emotional moment to say the least. We'd been warned that she might not look herself (bloated, bruised, pale etc.). However, looking past the endless tubes and cords, she looked perfectly Janie. Her color was normal and her face was pleasantly content. We could kiss her head, hold her hand and touch her toes.









Immediately, our nurse began to walk us through the purpose of each individual IV, tube, monitor etc. Her vital signs were great. We kept hearing how pleased the doctors were with how she was initially recovering. One of the doctors was about ready to give her a try without the breathing machine! But naturally, his expertise thought the better. Initially, she wasn't requiring some additional measures a baby coming out of surgery might need. We really heard nothing but positive news!

The goal for the night is to keep her very sedated. As much as we wanted to see her eyes (which we saw once in a while), as soon as she would perk up they'd give her a bit of morphine to calm her back down. The last thing they wanted was her to wake up and starting pulling on wires!

Our cardiologist (Dr. W) and the intensivists on the PICU floor came to see us to answer questions and walk us through the next 12-24 hours. We're certainly never are concerned about the care JG is under. An awful lot of people have sacrificed many years of their lives to provide the kind of care JG needs.

Speaking of sacrifice, I need to mention that Jennifer is an ultra-committed mother to JG in the way that she has pumped 4-5 times per day in order to give JG the best nutrition possible. Throughout our very crazy day today, she faithfully stepped away to pump when necessary. It's a labor of love that I'm convinced will have life-long impact for Janie G.

In the end, we get the impression that this surgery was more involved than originally diagnosed and maybe even more than what they were seeing up until yesterday. For the medical professionals following along, there were three things addressed with this surgery (1) common atrioventricular canal defect, (2) tetralogy of Fallot, (3) small muscular VSD (which I believe is ventricular septal defect). We knew about #1 early in Jennifer's pregnancy. #2 presented after JG was born. #3 wasn't detected until very recently. Fortuntely, all were addressed today. In the past, these conditions may have required multiple surgeries. The bottom line is that this didn't end up being quite as routine as we'd have preferred, but they took care of it nonetheless!

The local W-S Family Support Network provided a pasta dinner tonight which we enjoyed with the Nylands (wonderfully faithful friends of the family) and even celebrated Len Nyland’s birthday (Lorrie Nyland spends Friday mornings hangin' with Janie G). It was strongly recommended by me, Jennifer's parents, and, ultimately, our nurse that Jennifer join me at RonaldMcDonald house tonight. JG will be very sedated in order to keep her still throughout the night. As much as she'd like to stand at her bedside, Jennifer needs energy to give Janie Grace when she becomes more alert tomorrow. Sleeping in the room tonight would have been a restless night with little to show for it relative to supporting JG. Therefore, we hope to be refreshed for a new day tomorrow.

We hope that her breathing tube will get pulled tomorrow at which time, the tubes that are draining excess fluid from the heart would also likely be removed. This will be the next big milestone. Several hours after the tube is gone and she proves her ability to sustain herself, we'll get to try a bottle. You know from my previous posts how anxious we are to see how she handles this. Join us in praying that she shows an interest and ability in taking the bottle. It would be a miracle to walk out of here without a feeding tube, but we'd be thrilled just to have her on the road to tube-free living even if it's a mix of bottle and tube.

Finally, I'll finish today's updates with the following. If at 5:30 this morning we were told what our day would like, I don't believe we could have asked to be in a better place than we are right now. JG is about as healthy as reasonably possible, and we experienced a sense of peace never felt before. We were granted a measure of assurance from the Lord via your prayers that allowed us to endure a day (we don't want to re-live) free of worry and fear. Being on this side of thousands of prayers is about as humbling as it gets. We could never begin to articulate our appreciation for you.

We'll keep this blog going throughout our hospital stay…and like I said to Zack (Jennifer’s brother-in-law, http://zackmansfield.com/, did I really just shamelessly link to another blog on my first day of blogging?)…”I may have to keep this going”. I mean Jacob, Jensen and JG could give me endless material! (just don’t look for me to be sportin’ some Birkenstocks this summer!)

2:15

Dr. U (the surgeon) came to visit with us. He described her heart as PERFECT now. He was smiling he was so pleased. He feels strongly that it's fixed for good with no need for additional repair!

They ended up addressing 3 issues with her heart. It was clear to him why her breathing was so labored. Her little heart was working so hard yet so inefficiently. There was a lot of blood flowing through her lungs.

We hope to see her between 3 & 4. Jennifer says that it's kind of like anticipating her birth. We know she's just around the corner. That said, we're a bit anxious about what we'll encounter. These will be some challenging days of recovery but we have the assurance that her heart is better. Please continue to pray that she can get off the breathing machine and that her heart will quickly heal and recover as we transition to recuperation.

Simply, we are overwhelmed. I sat here for ten minutes writing different words/phrases and then erasing them. I cannot come up with anyway to verbally describe how we feel. I suppose our smiles say it all. We're relieved but know there are difficult days ahead.

1:15

Praise the Lord! The surgeon's initial feedback is that he feels very good about the surgery! She's off the by-pass machine. Still needing the breathing machine. We hope to see the surgeon in the next few minutes for his first-hand account.

A big cheer went up from your corner of the waiting room. Tears of joy.

12:15

We've been told that the surgery is still in process. It doesn't appear that there have been complications but it's looking like it might be on the longer part of the time estimate. She may need to be hooked up to a machine to help her breathe even after being sent to the PICU. We were told this could be the case. We'll stay in the main surgical waiting area until 1:00.

I told Zack that I'm anxious, jittery and shaky...sort of like before a b-ball game in high school. Nonetheless, our spirits are high and the time is passing quickly.

Please pray that her body would accept these changes well and that it would quickly make the necessary adjustments.

11:00

The patch is in place and the surgeon is stiching it so that it has a tight seal. We're told that we'll head to up to the PICU waiting area around noon in anticipation of hearing from the surgeon directly in the early afternoon.

10:00 AM

Janie's incision has been made. She's being hooked up to the by-pass machine. The real work will begin soon. She will probably spend more time being prepared and cleaned-up than in actual surgery. Pray for Dr. U's hands.

By the way, I asked the surgeon what he uses to patch the hole. I probably gave him a strange look when he said "gortex". Yes, the same stuff on the inside of our modern rain coats. They stitch that into the hole and then the skin tissue grows around it as her heart develops.

Pre-Op/Drop Off

Before I say anything...I really cannot believe I'm writing on a blog (it was on my list of things I'd never do!). For the record, I do enjoy reading them. I should also point out that I've successfully refrained from three things I said I'd never have ...birkenstocks, sideburns and rollerblades.

Yesterday's Pre-Op time went about as well as could have been expected. It took about 5 hours. She did the many things that have become customary (ultrasound, ekg, chest x-ray etc.). We met with the anesthesiologist, surgeon, etc. As usual the blood draw was a challenge (even for the helicopter transport team). They actually ended up having the surgeon draw her blood from an area nurses are not permitted to use (groin). He was immediately successful. Fortunately, we got out of there about 5:30 and made our way to our room at the wonderful Ronald McDonald house. After settling in and having some food, we were able to take JG for a walk on what was a beautiful Spring evening through Winston's Ardmore neighborhood. It was actually a wonderfully relaxing time (the calm before the storm). After some time on the porch together, we put JG to bed (taking one last look at her scar-free chest) and didn't take long to join her!



We needed to wake up at 2:30 AM to quickly turn off her feeding pump before finally getting up around 5. Janie slept really well (her last night on her front-side for a while). At 6 AM she was giving us her new-found smiles as she awoke and her always-penetrating eyes looked at us like it was just another day. However, by 6:15 we were walking over to the hospital.

Once on the surgical floor, at 6:30, we were immediately brought back to a check-in area and JG was "inspected" to make sure she was still fit for surgery. That was an interesting experience...a dozen or so families lined in up in bays about the size of a hospital bed seperated by curtains all preparing to send their child into surgery for varying reasons. (I've never seen so many doctors in a 200 SF area.).

We handed Janie Grace off at about 7:30 (to an anethesiologist who is a White Sox fan from Chicago...God bless him). The hand-off was actually easier than we'd have expected as we wrapped her up and put her in the large arms of a very capable doctor. Of course, we also are assured of her being in the hands of the Great Physician.

It's more than surreal sitting here knowing what's is going on behind some walls on the same floor. I keep trying to picture what she experienced before they put her into lala land. Her eyes watch everything now. What did they see? I wonder. I cannot wait to touch her again.

It's also more than overwhelming to attempt to comprehend that hundreds of people are praying for us around the world today. All I can tell you is that we absolutely feel them and have peace from the Lord.

Finally, it's a blessing to have Jennifer's parents, Tracy (Jennifer's sister) & Zack and family-friend Ronda here in this large surgical waiting area.

As of 9:00, we learned that they were still working on all of her IVs and other tubes that need to be in place. We expect another update at 10:00.