A few pics

Dad went to sacrament today, so Mom and Jack stayed home and watched Music and the Spoken Word.
This is unhappy Jack screaming his head off because he needed his diaper changed yesterday.

This is my happy Jack. One of these days I just know he's going to whip out a big grin for us. He gets stronger and feistier every day.

The Home Health nurse came yesterday and according to her scale Jack hasn't gained any weight since Monday (still hovering at 7 lbs 9 oz) so she's going to see if we can increase his feeds and feed him more often. I think he will like that. He's eating almost exclusively with the bottle now and tolerating it really well so hopefully he'll get his feeding tube out soon.

Tantrum

Jack had his first absolute tantrum today, and of course it started about 2 mintues after dad left to go to sacrament. He cried and screamed his super upset cry for almost half an hour and nothing would calm him down. I usually don't worry too much when he cries because babies do that, but he was freaking out so bad I could tell his heart rate would have been setting off alarms like crazy had we been at the hospital and his lips started turning a little blue. I turned up his oxygen and weathered the storm and eventually he passed out from exhaustion, but it was pretty scary. I hate it when he works his little heart so hard. We do not want to be back at PCMC for at least a few more months.

Tagged

Well, Jack's little friend Paisley tagged him, so here are ten fun things about Jackson right now.

1. He loves to eat, and even though he’s on a schedule to eat a super high calorie meal every three hours, mom usually has to warm up a quick snack about an hour before every meal because he’s sure he’s starving to death.
   
2. He adores his binky and does not like when it falls out of his mouth, especially during a big sneeze. Very traumatic.
   
3. Jack loves to snuggle and be held all the time.
   
4. He may be toothless, but he’s got one heck of a sweet tooth and has been through a lot of sugar water in his short time at home to calm his down when he freaks out.
   
5. He’s got his parents and grandparents wrapped around his tiny little finger.
   
6. Jack has very busy fingers and loves to hold them or have them snuggled up by his face all of the time.
   
7. If you look close, his hair has just a hint of red in it and a little bit of curl.
   
8. Jack’s not much of a complainer. A little dramatic – yes, but he usually only cries when he’s got a problem. Otherwise he’s just looks around happily or sleeps.
   
9. He is very strong. No only has he recovered quickly from open heart surgery, but he also knows how to roll onto his sides to sleep and can hold up his neck when he’s protesting being held in a position he doesn’t like.
   
10. He’s got cool scars, and chicks dig scars.

Allergies and feeding

It seems poor Jack is allergic to something that is blowing around out there right now. It makes him sneeze, and last night he had a tiny bit of a stuffy nose. Being a very smart young man, he figured out that he could breathe better if he slept on his side rather than his back so he would roll over, but that meant that his binki kept falling out which is very serious. The result - mom and Jack slept most of the night in the lazy boy so Jack could sleep on his side and keep the oxygen flowing and mom didn't have to keep getting up to put his binki back in. We are both very tired today.

The speech therapist came by this morning to see how Jack is progressing with his feeds. She said he's still a bit gulpy, but he's doing great and she gave me some techniques to slow him down. He is taking almost all of his feeds orally now. He can't quite do it all at the same time as that is still too much work, but he gets really hungry before it's time to eat, so if I give him a snack when he's hungry then feed him the rest when it's time to eat he can usually do it all by himself without the help of a tube. The therapist thought we would probably be done with the tube by next week or so. Hooray!

Pediatrician

What a cute face!

Jack went to the pediatrician today. It was our first jaunt out in public other than being at the hospital. Carrying around his oxygen tank and getting him loaded and unloaded was much easier than I thought it might be. The doctors office if very close by, and I really liked Dr. Mashkuri. We got her name from another HLHS family since we wanted to have a doctor who was already familiar with this condition. She was very nice and she also called Jack a rock star. We love to hear that from doctors. Jack wasn't too thrilled to have someone taking his temperature and bugging him again so he threw a serious fit, but he cried long enough that he was totally exhausted and took a nice long nap for most of the afternoon. Again, the benefits of a feeding tube is that you don't have to let a good nap get disturbed by hunger pains.

Happy 3 Week Birthday!

I can't believe Jack is now 3 weeks old. He is getting bigger and stronger every day. Our Home Health nurse came by yesterday afternoon and Jack now weighs 7 lbs 9 oz. His favorite things are: being held, his binki, sugar water, a full tummy, and the Utes (of course).

I'm getting the hang of all his meds and eating and trying to get a few things done around the house. Again, thank goodness for Grandma who is a terrific babysitter and let me get out of the house and run to the store for a while today.


One of these days I'm going to capture a photo of one of his sleeping smiles. I know they are supposedly only gas, but oh, they melt my heart. His serious face is pretty cute as well though.

My mom's neighbor made this cute picture for Jack. So sweet I had to share.

Sorry

Sorry - I didn't mean to scare anyone by posting the first line of that story as the title . My apologies. I did put it in quotes though. I just wanted to share that story as it always brings a little tear to my eye when I think of Jack.

"It's a beautiful day up in heaven..."

It's a beautiful day up in heaven. Jesus is rounding up his tiniest angels to go live on earth and be born. One of the sweetest angels says to Jesus, "I don't want to leave. I like it here and I will miss you." He reassures the scared little angel that everything will be okay and that he is just going for a visit.

He is still not swayed on this idea so Jesus kneels down and says, "How about if you leave half of your heart here with me and take the other half with you. Will that be okay?" The angel smiles and says, "I guess that will work." But the little angel is still a little scared. He asks,"Will I be okay with only half of my heart?" Jesus replies, "Of course you will. I have other angels there that will help out, and you will be fine."

Then Jesus gives the angel more details about his plan. He says, "When you are born your mommy will be scared so you have to be strong, and when you feel weak just remember that I have the other half of your heart. Enjoy your time with your family, play and laugh everyday. And when its time to come back to heaven, I will make your heart whole again. Always remember that you are not broken, just torn between two loves."

Naughty or Nice?

Jack had a really good night, sleeping peacefully through his midnight feeding and waking calmly for about an hour during his 3 AM feeding. He was so good that we didn't even wake up Hardy.

At 5:30 Jack started crying so dad took his turn to go in and feed him and he discovered that Jack and his busy little hands had yanked out his feeding tube. Of course we didn't yet have a stethoscope to help me make sure the tube was placed in the right place so Hardy had to run to Walgreens and purchased the only one they had in the store. I then had to shove a new tube down his nose. Thankfully I got it in the first try, but Jack was none to happy about it, and neither was mom or dad. Then about 10 mintues after dad left for work he nearly pulled the darn thing out again. I caught it in time and got it taped down securly, but now I think it moved and is out of place again so somehow I'm going to have to get it off and readjusted. Thank goodness Grandma has arrived so someone can hold him down while I pry the tape off his face for the third time this morning.

Here is a picture of his battle wounds. Most of the holes in his tummy are from the drains and pacer wires. Looks pretty good considering what he looked like 2 weeks ago.

Home!

We finally got discharged yesterday around 2:00 p.m. and were able to bring precious Jack home for the first time. It has been so wonderful and a little bit terrifying.

Someone decorated our front door to welcome us home. It was so sweet I nearly cried, so thank you whoever you are!

Jack got his pacer wires and all his bandages out and off on Friday so he got to wear clothes for the first time. It makes him so snuggly and cute.

I fully intend to get some better photos later today, but ever since we got home we have spent all our time just trying to figure out what the heck we are doing.

Home Health came by yesterday and brought all our oxyen and feeding supplies. He is only on .25 liters of oxygen, so hardly anything, but it means we have a great big oxygen machine in our living room and several tanks in the closet and he is still somewhat tethered even though he no longer has any monitors. We can only go so far with him before we have to switch to a new oxygen source or trip over miles of tubing. That makes it hard to just run upstairs to change his diaper our run downstairs to grab a bottle, but we're figuring it out.

The feeding situation is also getting better. We have a pump so we can feed him at night without having to wake him up which means he actually slept quite well last night for probably the first time ever (no beeping or being poked for vitals every few hours). Unfortunately even though he wasnt' crying it doesn't negate the hour plus that it takes me to get his bottle ready, feed him with the pump, clean the pump and all his feeding supplies, then go breast pump so he has more milk for his next meal. He eats every 3 hours so I'm a little tired today and I don't foresee me getting untired for the next while. My only snag is that ever since doing his feeds last night without waking him up, he is now refusing to wake up today at meal time to try to take a bottle which he was getting so good at.

I did almost lose it yesterday when we got home and it was time for his meds and none of the names on the bottles matched the name of what I was supposed to be giving him. I had to call the pharmacy to find out what generic drug name on the bottle matched what they had written on our discharge papers. It was frustrating and almost pushed me over the edge, but I think I've almost got it all figured out. I'm working on a master schedule of feedings and medications so we can keep track of everything since everything kind of runs together these days.

Hardy has to work alld ay tomorrow so thankfully my mom is going to come out and help me. I don't quite have everything figured out enough yet to do it totally on my own. Thankgoodness for moms!

The End is near

We are just waiting for the discharge nurse to give us the go ahead to go home. We are very excited but still a little nervous. Again, we can not thank everyone enough for their prayers on behalf of our family. We were anticipating a minimum stay of a month. We are leaving 17 days after Jack's birth. He is truly a miracle. We are grateful for all the wonderful people at Primary Children's who have cared for him. Hopefully we will get some pictures of Jack in his own room later tonight.

Pacer Wires and NG Tube Placement

This morning Dr. Kaza and Dr. Hawkins came by to look at Jack. They said we are still on to go home tomorrow so the nurses are diligently working to help make sure I'm thoroghly trained. Last night I learned how to "gavauge" into Jack's feeding tube in case Home Health doesn't send us home with a machine. We also have his milk recipe all figured out and I am now learning how to properly mix it and where to get more supplies.

They pulled out the pacer wires on his chest this morning. Yay! He didn't care too much for that so while he was already upset and highly sedated on sweeties I decided I better learn how to put in his NG tube as I had to pass that off before we an go home. I almost cried at the thought of having to do it, and Jack cried during it, but we made it. The tube has to be measured so it will reach his stomach then "gently" shoved down his nose. We tried to put it in his right nostril, but it just would't go down and it made him totally scream. On the third try I aimed for the left nostril and it went right down. I think I can do it again if it's a repeat of the left nostril experience, though I think I need to get some of the Heart mom's who live near by (that's you Bryttin and Brynn) on speed dial so they can talk me through it if I have to do it and freak out.

As we prepare to leave the hospital tomorrow I am very much looking forward to it, but also a little nervous and a tiny bit sad to leave all our sweet friends up here. Patty and her sweet Little Laurie, Bryttin and Teagan, Hilary and Daxton, Hollie and Eliana - you're all amazing.

More Milestones

Jack taking his first bottle

Today Jack passed his hearing test.

We also met with the speech therapist a couple of times and she helped us figure out what type of nipple he prefers on his bottle and the best consistency to make the milk to keep him from gulping down too much at a time which he seems to have a tendancy to do.

Jack's grandma also came up and rocked him for a while so mom could go home for an hour and take a real shower. That was particularly nice.

The downside of all Jack's good eating is that it makes him SO tired and he's slept a ton, so I'm afraid he might be a little perky tonight. It could be a long one.

We are still tentatively on track to come home Saturday.

Saturday

There is a reason we never say discharge dates out loud around here because they always seem to change as soon as you do. Dr. Hawkins came in to check on Jack this morning and said they are thinking we'll discharge on Saturday now instead of Friday. It seems they thought they could do his PKU blood test on Friday, but I guess they can't do it 'til Saturday so they decided to keep us an extra day rather than make us come back up. We feel very good about that. It also gives us a little more time to work on his feeding.

Speaking of feeding, this morning when I gave Jack his bottle at 6:00 he managed to get down 28 cc's all on his own! He probably could have kept going but we decided not to wear him out too much so he can hopefully do it again when the speech therapist comes this morning. That is such huge progress since the last few attempts he's only managed around 5 cc's out of the 48 that he needs to consume. It also means that he is exhausted and he has been sleeping really well for the last little while so I could catch up on some sleep myself.

Today's Milestones

We are continuing to work on teaching Jack to take a bottle, but he's still not too sure about it. The speech therapist stopped by to help with his afternoon bottle feeding but despite all our efforts we couldn't quite wake him up enough to try it so she's going to come back in the morning and we'll try out a few things to help him.

I am now giving him his meds under the guidance of the nurses so I'll be a pro by the time we go home. They all just go down his feeding tube so it's not too tricky. I'm also getting pretty good at calming him down when his tummy hurts without always resorting to the binki dipped in "sweeties." You would think it would be the morphine or lortab that he would become dependant on, but no - my kid is going to need a perscription for his special sugar water, literally.

I also got peed on while changing his diaper for the first time today. I was changing a rather poopy diaper, trying to negotiate around all his wires, and talking with Bryttin, another heart mom, so totally forgot to keep him covered. Whoops.

Hardy is bringing in Jack's car seat tonight so we can do his trial tomorrow. We are also going to do our CPR training tonight. This is all in preparation for hopefully going home on Friday. Unreal. I can't even imagine what it will be like to hold and change him without all the wires, bells and nurses around. We just feel so overwhemled and blessed. There is still a very long road ahead, but it feels great to have this first major surgery behind us. We hope our next one in a few months goes as smoothly.

My night with Jack

For all the naysayers out there that questioned my resolve to be able to stay at the hospital all night I give you the following report. Jack had a pretty good night. He slept from about 11:00-3:30. He woke up going crazy. I sat and rocked him for about an hour and then turned him over to the nurse for his 4:00 feeding. She got him taken care of and then he slept until his 6:00 chest x-ray. He had a good night but boy that boy has some lungs. His Mom is known to talk loudly so we know where he must get that from. Someday when Jack is a little older and knows what his Dad likes and dislikes he will be touched that I spent the night there with him. Aimee relieved me around 8:00 this morning looking very refreshed after a nice nights sleep at home. His bottle feeds continue to progress slowly. The speech therapist is coming by today to help us learn how to feed him a little better. Hopefully this will help.

The Bottle

Well, Jack's first attempt with a bottle went pretty good. He ate about 8 cc's of the 32 that we gave him with quite a bit of interest before he got overwhelmed and started crying. The nurse said that was a good start considering he's never swallowed anything. He is scheduled to attempt a bottle for the first 10 minutes of every other feeding, so hopefully he'll get it figured out a little better in the next few days. My mom took some video of it so I'll try to edit it down and post it later.

Bottle Feeding Later Today

The Nurse Practitioner just stopped by and said that she has ordered Jackson his first bottle. They stopped his feeds a little while ago so he'll be a little bit hungry when we give it to him around 4:00. We will let him eat for 10 minutes, then whatever is left will be given to him down his feeding tube. I have the feeling he is going to be a big fan of the bottle.

We also have our list of things we need to learn before we can go home:

1. Infant CPR training for me, Hardy, and the grandparents.
2. Learn how to give his medications and what medications to give.
3. Figure out how to mix his special milk concoction if he still needs the calorie supplement
4. Learn how to put in a new NG tube in case he pulls his out and figure out how to feed and give medications through it. Ideally we will go home without the feeding tube, but we need to be prepared.
5. Car Seat Trial to make sure his stats don't go down when he sits in his car seat.

With RSV season fast approaching, we also have to learn to be very careful about where we go and about washing and sanitizing our hands every time we touch him - so if you come to visit, don't be surprised if we are super cautious and won't let you through the door if you've been around anyone who is sick.

We'll see how things go with the feeding, but it's so crazy to think that we could possibly be home by this weekend. Unbelievable.

Happy Two Week B-day

Some baseball players from the Bees came by to visit Jack today and gave him a signed baseball. The coach worked for a few years with the Red Sox so Hardy enjoyed chatting with him for a bit.

Third Floor and a Knot

Yesterday afternoon we officially made it to the recovery floor! It's so nice to have our own room and be able to spread out and relax a little. It also meant that mom and Jack got to have a sleep over together last night as we as parents are now more responsible for his care.

According to the nurses Jack was sleeping fairly well in the PICU, but he had a rough night last night and insisted on being held from 10 pm - 4 am. Thank goodness for nice nurses who offerd to take a shift so I could get some sleep. Well, this morning we discovered the source of Jack's discomfort. After Jack passed his swallow study with flying colors they decided to move his NJ (feeding) tube to an NG tube so he could get used to the milk going into his stomach instead of his gut before we try to bottle feed him today. Well, this morning they did his daily xray and found that his feeding tube had not been pulled out enough and was coiled in his tummy and was still going directly into his gut. When the nurse pulled the tube out so she could put in a new one to the right location, it had a big old knot in the end of it. No wonder he was miserable, poor little guy. He's feeling much better now, though he didn't much enjoy the prosess of pulling that out through his nose. Ouch!

Tonight is a guy's night and dad will be taking his turn to sleep over with Jack. I'm sure that will make for some entertaining tales from both boys.

Swallow Study

Jack passed his swallow study today with flying colors. They were very pleased with the results. He will not start to gradually work his way to feeding from a bottle. This means that sometime today we should be discharged from the PICU and head up to the 3rd floor. While we will miss all the wonderful care they are given in the PICU we know that this is one step closer to taking the little guy home. They are hopeful that if everything goes well we can bring him home in the next week. We are constantly amazed at how well he is doing and know it is the results of everyone’s prayers on his behalf. We will try and post some pictures of his new room later tonight.

Cute Jack

Getting Big and a Poopy Diaper

It's so nice to be able to hold him again!

We even occasionally let the grandparents have a turn.

I can't believe Jack is almost 2 weeks old. It's funny how we suddenly can't remember the world without him. He continues to do really well and they told us to plan on moving to the recovery floor today, so I'm packing my bags for an overnight stay. Of ourse I'm nervous but very excited to be able to do the mom thing for real.

They finally weighed him again yesterday now that all his drains and tubes are gone and he's 7 lbs 4 oz, so he's getting bigger. He's also getting full feeds now plus a caloric supplement. Heart babies often have a hard time eating and growing so calories are a big deal. I don't know yet what time his swallow study is scheduled for today, but Jack is crying and coughing which are both good signs that no damage was done during the surgery so hopefully he won't have any problems taking a bottle.

The best part of yesterday was that Hardy actually helped me change Jack's poopy diaper. I wish I had a video of it. You would have thought Hardy was going to die, and the nurse agreed with me that Jack's dramatic side definitely comes from his father, but even after I told him I could handle it myself he stuck with it and we got the kid all cleaned up and feeling good. I will give Hardy credit that he is now very proficient with changing the wet diapers, it's just the smelly ones he thinks are going to kill him. What a cute dad :)

Full, Happy Arms

This morning around 10:00 a.m. Dr. Kouretas removed Jack's RA line and final drain out of his tummy. The result - we got to hold him all day long! We even let his grandma and grandpa take a turn when they came to visit. We had a few episodes when he got himself so upset that he forgot to breathe and he turns dark purple from lack of oxygen, but we are learning not to freak out about that and figuring out better how to calm him down. Hopefully we'll be pros by the time we leave the hospital.

Tomorrow we plan on more good snuggles as we have 10 days worth to make up for. Jack's feeds are up to 13 cc's per hour with 16 being considered full feeds so he should reach that by tomorrow afternoon. Then we just have to pass the swallow test Monday and we'll hopefully be moved to the 3rd (recovery) floor. That both terrifies and thrills me to pieces.

Looking Good

Jack has decided that he likes his big binki rather then the smaller one we were trying to give him yesterday. He particularly likes it after it's dipped in sugar water. Mmmm....that's my boy!

They pulled another drain from his belly today so he's only got one left which will come out at the same time they remove the RA line (the IV into his heart). He seems to be a lot more comfortable with it out and he is taking deeper breaths and sleeping more comfortably. They were planning to remove the RA line today so we could hold him, but they bumped it until tomorrow until his feeds got a little higher. It's very hard to be patient.

As you can see here, he's also got a lot less equipment. Most of the drips here are just food, a flush line, and a little medicine for his heart.

It's hard to believe that one week ago he looked like this.

Echo, Feeding, and a New Bed

This morning Jack had a 2 hour echocardiogram. He wasn't too happy about it, but it wiped him out and he slept most of the rest of the day wrapped up in his little cocoon. The results showed that his valves are doing well and the blood flow is good. The only concern is that his pulmonary artery is a little small. Hopefully it will grow in the coming months and won't be a problem, but the doctor said that if that's the biggest set back we have then we should take it and run as it is pretty common and fixable. That made us feel better.

They pulled out one of the 3 drains in his tummy later this morning, and they plan to take out the other IV that goes into his heart by tomorrow. Once that line comes out we can hold him again. The night nurse actually offered to let me hold him tonight, but for the welfare of sweet Jack I had to remind her about the line and that we aren't supposed to hold him yet. It nearly killed me to turn that down, but I think I can wait until tomorrow.

Jack seems to be tolerating his feeds quite well and they keep increasing them. I believe he is now up to 5 cc's per hour. They are feeding him breastmilk through an NJ tube which goes down his throat, through his stomach and directly into his gut. He has to do a swallow test to make sure he can take food through his mouth and is tentatively scheduled for that on Monday. If he passes we will probably be able to move to the recovery floor and can start trying to feed him with a bottle. Apparently they have to do a swallow test anytime they do surgery near the arch of a heart since it is very close to the nerves used for swallowing and they can often be damaged during surgery. Hopefully he will pass without any trouble so he can enjoy the feel of a nice full belly. 9 days without food is a very long time to be hungry.

Our other big excitement for the day is that we got moved to a new bed. All I heard was that they were bringing in a kid who is sceptic to the bed next to where Jack was and I was happy to moved to a nice area across the way next to another heart baby.

No more tube!

Good to see that cute face again

Jack got rid of quite a few lines and tubes today, and they plan to take out even more tomorrow. It makes it extra hard to not pick him up and just nibble on his cute cheeks.

I got to half hold him for a few minutes after they took the ventilator out. It helped tide me over until I get to actually pick him up.

Our next big steps are really just to get him feeding and healing. He's up to 2 cc's per hour on his breastmilk which he is tolerating well.

Dr. Kaza and Jack

This is a picture of Jack with Dr. Kaza. What can we say about the man who saved our sons life? Dr. Kaza is someone with incredible talent as well as humility. He would lose his humility if he would accept the compliments Aimee and I have given him over the past week. He always defers the credit to the team around him and to Jackson. He comes by several times a day to check on Jackson. He pats his head to settle him down if he is fussy. He re-assures us about everything that he is doing. Last Friday before the surgery he came to visit us. We were obviously terrified about sending our 3 day old son to open heart surgery. Dr. Kaza looked so confident and relaxed. He told us he was going to “take good care of him.” He certainly has. Dr. Kaza came from Boston’s Children’s Hospital a few weeks ago. I know that it was a blessing that he came in time to do Jackson’s surgery. He has a passion for kids who have left heart problems and is hoping to set up a research lab at the U to figure out how to fix this better. We are grateful that God has blessed such a select few with such amazing talent. We are especially grateful that Dr. Kaza could use his talents on our child.

Off the Ventilator!

He made it and is officially ventilator free! His voice is pretty hoarse, but it's so good to hear him cry and see that cute little face again. He even started sucking on his pacifier again fairly quickly. What a trooper :)

Taking out the ventilator

This morning they did Jack's breathing trial to see if he can breathe on his own. They leave the tube in but let him do all the work. He did great so they are going to take the ventilator out sometime soon. Actually, they are just getting ready to do it right now! Wahoo! Dr. Kaza is also going to remove one of the IV lines that goes to his heart once he gets out of surgery.

Our favorite nurse Ken is back and taking such good care. He even pulled out his urine cathetor so we get to start changing diapers again soon. Who knew I'd be so excited to be able to change a diaper and hear our baby cry?

We're making good progress today. Ken said Jack is the poster child for HLHS babies. Music to our ears.

Jack on Sunday

A few pics

Rock Star!

Jack is doing so well today. They took the line out of his jugular and removed the catheter in his stomach this morning. Then this afternoon they put in his feeding tube. We are just waiting now for his xray results so they know the tube is in the right place and they will begin feeding him. He'll start at 1 cc per hour. That's less than an ounce in a day, but it's start.

The doctors and nurses have all said Jackson is a star, doing exactly what they want him to do. In fact, he's a little too helpful with his busy hands so we've had to put some gloves on him to make sure he doesn't yank anything out. He's a lot less sedated today so all the hustle and bustle of the PICU is making it hard for him to sleep, but we've discovered that he does pretty good if we build a little tent over his head to block out some of the light and noise.

Next step - tomorrow they are going to start trying to take him off the ventilator. Once they do that we've been told we'll probably get to hold him again.

We finally remembered to bring the camera, but I forgot the cord to upload the photos so I'll try to get some new pics up tonight so you can see him with his chest closed and a few less lines coming out of him.

Go Jack!

Chest closed

The Chest is CLOSED! Dr. Kaza got done around 5:15. He said everything looked good. They are going to let Jack gradually breathe on his own today and tomorrow. Hopefully if all goes well he will be extubated in the next 36-48 hours. That is kind of our next step. We had the camera ready to go but in the haste to see our son we forgot to bring it up. We will get some pics later tonight. Again, marathon not a sprint but Jack is doing so good and we are so happy with his progress.

Closing Jack's Chest

The doctors just came and kicked us out for a little while so they could close up Jack's chest. He should be done around 5:15 p.m. We're a little anxious, but it was much easier to leave this time compared to the last proceedure he had. This is a great step in the right direction.

Still nothing new

Thankfully we still have nothing much to report. Jack's swelling has continued to go down so he looks much more like himself this morning. He's also getting more and more alert. It breaks my heart when he gets upset and cries and no sound comes out. It's hard not to be able to do much to soothe him, but he usually settles down pretty quick. The nurse last night added some toys and a little music machine in his crib so those help as well.

They still don't have a set time for when they will close him today, but Dr. Kaza is hoping to do it in the early afternoon.

Todays Pics and update

Jackson had another really good day. He was really alert today and was trying to stretch out all the time. He got nice visits from all six Grandparents and of course constant attention from his parents. I was a huge fan of the 30 minute church block with shorts and a tee shirt on. It was nice to have Rob and Angel join us today for church and a quick lunch. They have been a great support. We are still hoping they close up his chest tomorrow morning. After they do that they will try and wean him off as much of the medications as possible. We keep bracing ourselves for a setback but will not feel cheated if he does not experience some complications. We know this is a marathon not a sprint but we are so proud of the little guy and how well he is doing.

Jackson was able to enjoy the last few holes of the PGA Championship. He was not surprised when Sergio choked again!

Closing his chest Monday

Hardy and I are at home right now doing some laundry and regrouping before we head back up. Although I am a little anxious being so far away, Jack is just doing so well that we felt like it was a good time to get some things taken care of.


The doctors and nurses continue to be pleased with Jack's progress. They are tentatively planning to close his chest sometime tomorrow. Ken said they do the proceedure right there in the PICU and it should only take about 30 minutes or so. Christy also told us last night that she thought Jack's incision was a lot smaller than others she has seen. They have been turning down his oxygen and he hasn't needed many extra fluids so his swelling has gone down a lot. You can really tell around his eyes and he's able to open them a lot easier.

Our friends Rob and Angel came by this morning and joined us for church. Their little boy was up here for a few months earlier this year and they missed the nice 30 minute block :) There is definitely a special spirit in this hospital which was amplified all the more at church. You would think that a building full of sick kids could easily be a very sad place, but instead it is very peaceful, loving, and a place of healing. We are so blessed to live so close.

3:00 a.m. Report

I called over around 3:00 this morning and Christy said that Jack was having a very peaceful night - hardly making her work at all. He was showing some signs of agitation and waking up a little more than she wanted so they put him on a continuous drip pain meds, but he's still doing great.

We're going to head over to PCMC for church in a little while. Hardy is very much looking forward to the 30 minute block :)

Nice and Peaceful

Today has been nice and peaceful. Just the way we like it.

For the first 24 hours after surgery Dr. Kaza had Jack on some medication that paralyzed him to make sure he didn’t wiggle or do anything to affect the repairs. This morning around 11:00 they turned the drug off, so when we got back from lunch with Hardy’s mom Jack was starting to come around a little. I went to touch his foot and his little toes curled like they were ticklish. As the day progressed he continued to get a little more responsive so by this evening he even looked at us a few times. It was so nice to see him in there again. It seems very strange to me that it’s possible to be awake while your chest is open, but they have reassured us that he is not in any pain and doing well.

The doctors and nurses continue to tell us that they are very pleased with how great he looks. If he keeps this up then hopefully they will close his chest either tomorrow or most likely on Monday. They can then start to wean him off the ventilator and get the IV out of his jugular vein. We have to keep reminding ourselves that there are no time tables for heart babies and we need to stop setting any expectations for when all this might happen, but it is so hard not to when they keep saying how great he's doing.

Hardy and I keep saying how it feels like we've stepped into a time warp. It is absolultely unbelievable to me that it was less than a week ago since I was pregnant. Yesterday morning when we had to say goodbye as Jack went off to surgery feels like a month ago.

We have been blessed to have some really great nurses for Jack. Ken worked the day shifts, Christy the night shifts. They are taking great care of him and always make sure we know what they are doing and why. It's very reassuring and we are greatful.

Today's update

Jack is hanging in there today. They took him off the paralytic and we have even gotten a few peeks at his eyes today. He kind of half opens his eyes and shutters a little when you tickle his feet. All of his stats look pretty good today. He is a little puffier which they told us is totally normal. They are thinking they might be able to close his chest on Monday. That would be great but we are still trying not to put timetables on things like that so if it does not happen we will not freak out. I know I say this in every post but the people here at Primary Children’s really do amaze me. Our good friends the Chilton’s and Christensen’s told us we would be amazed by this and we truly have been. It is hard not to think to far ahead now that Jack is doing well but we know we still have a long way to go. We are just going to be grateful that he is having a good day right now

Post - Op

We just got back from saying good night to Jack. He is doing so darn good! The doctors and nurses all keep saying how pleased they are with how well he's doing and I love to hear it every time. They have him heavily sedated and paralyzed so his body can focus strictly on healing right now, but that will only last for a few days. His heart rate keeps coming down and is now in the 130's which is really good. They also turned down his oxygen because he just didn't need as much. He's got a good strong pulse and color in his feet, and he's peeing a lot. These are the things they keep telling us are signs of how strong he is.

Here are a few pictures of him that we took tonight. The bandage is covering his open chest, and he's got quite a few IVs, but most of the tubes and wires you can see are for drainage and to track how he's doing. The more they explained what everything did the less scary it

They have sleep rooms for the parents of the most critical patients in the PICU, and I believe we would qualify tonight, but thankfully instead we are trusting his good care to the doctors and nurses and are back at our hotel room just 2 minutes from the hospital. I just have to say an extra special thank you to our friends who got us the room. Without a doubt it is the best gift we have ever recieved so we can be close to Jack but can also get a decent nights sleep. We are exhausted.

We saw our little Guy!

Aimee and I just got done with a wonderful visit with our incredible son. He did so good today, fought so hard, and is doing so good. They are obviously keeping a close eye on him and the next few days are very critical but getting through today was HUGE. When I saw him I just burst into tears. I was so amazed that they could do something to fix his little heart and am so grateful to the people who did it. Dr. Kaza was so modest when we thanked him. He is a fantastic surgeon and I am so grateful he used his talents on our son. Aimee and I are feeling good. I am sending Aimee to bed for a few hours while I go and sit with Jack. Thanks to everybody for their prayers. We will get a picture up later tonight. He looks a little different but I don’t think he will ever look this good to his parents again.

As good as it gets!

Dr. Kaza just met with us and said everything is done and went great. It was all but textbook. They will be taking Jack to the PICU within the next hour and we will get to go see him then.

The next 12 to 24 hours are critical and they will be keeping a close eye on him. His chest will be open for 3-5 days until Jack tells them he's ready for it to be closed. What a day.

Thank you for your prayers!!!! They are working.

Whew!!!!

The NP just stopped by and said that Jack's repairs are done and he's off the heart and lung machine. They are just making sure all the wires, tubes and other things are in place and that everything is ok. Unless something unexpected happens, the next person to come out and update us in an hour will be Dr. Kaza to report on the surgery.

Latest Update

The Nurse Practitioner made another visit. She said they are done with the reconstruction aspect and are going to start to put all the wires in. They will follow this by doing an echo-cardiogram. This will test how well the heart is working and if they need to do any additional work today. She said things are going good. We are trying to stay calm but are excited they were able to do the repair with little trauma so far. Still a long way to go but hopefully we are getting a little closer to being done. I am still amazed that these Dr.’s can actually pull this off. We met with Dr. Kaza this morning and he was very re-assuring and confident. He said he “was going to take good care of him.” We are grateful to this very skilled professional and the other ones that are taking care of our little guy.

A few pics from this morning

Jack wasn't too excited about going into surgery this morning...

But then the Nurse Practitioner let mom hold him AGAIN! (for 30 minutes!)

And he calmed right down. :)

It was so hard to let the doctors walk off with our sweet little guy this morning, but we have really been blessed with a sense of peace that the Lord is in control right now and he's taking very good care of him.

Sometimes as we worry it's easy for us to think how hard this is on us, but then we remember that this is in fact Jack's journey and we're just here to help and support him through it. I keep waiting for the floor to fall out from under us, but so far he has been a real champ and we just keep praying that it will continue that way.

Today we are one step closer to holding him in our arms again and to taking him home.

Update

They just began working on rebuilding Jack's aorta. No curve balls or anything unexpected so far, so that's good.

We also just got a great visit from another HLHS mom and her little boy Jack who is now 2.5 yrs old. He is the cutest, most energetic little guy and was just the inspiration we needed to keep us optomistic today. Thanks Lisa.

First update

They just gave us our first update. They have made their incision and started the procedure. He got on the heart lung machine and he seems to be doing ok. They are now going to start to update us every hour or so.

Surgery is about to begin

We are now sitting in the waiting room waiting for Jack’s surgery to begin. We came over early this morning to spend some time with him before. They let us hold him again which was great. Dr. Kaza came and visited and told us he would take good care of him. We believe him but man it was hard to tell him goodbye. They will provide us periodic updates on his progress. We are scared but know he is in the best hands he could be

Thrill of a Lifetime!

We were so lucky tonight to be able to hold Jack. Two fantastic nurses, Teresa and Amy, decided to go against protocol and let us hold Jack before his surgery. We were going to go in really early and do it then, but they decided it would be easier to hold him tonight than in the morning since the surgical team will be running around a lot of the time. I can’t tell you how grateful we were to them to let us do this.

Aimee got to hold Jack for about two minutes on Tuesday but that had been it. Tonight she got to hold him for almost 15 minutes and both she and Jack loved every minute of it. Jack had been fussing but quieted right down as soon as he was in his mothers arms. Naturally this had the opposite effect on Aimee and made her cry. I finally got my turn and I have to say it was the thrill of my life. I looked down at his sweet face and felt so comforted knowing that he is going to be cared for by the best Doctor’s in the world.

They have tried to prepared us for what Jack will look like after the surgery. I know we will still be so sad to see our perfect looking son come back to us swollen and with an open chest. But I also know that it is the first step in getting his little heart better so that we can hold him every night in our home.

We are thankful for everyone’s prayers on his behalf. Being able to hold him tonight was so comforting and that is an answer to prayer. We will try and post periodic updates of his surgery tomorrow as well as a picture of him when he comes out. Thanks to all of those who came by to see him today. All six Grandparents, Uncle Jon and Aunt Angi, Travis and Jill, Stephanie Barton, Cody and Steph, and my very understanding and supportive boss Jeff Ross. We have truly felt everyone’s love for us and for that we are grateful.

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1 day to go

Not much going on today. We have been trying to spend as much time as possible with our little guy before his big day tomorrow. He has had some visitors throughout the day which has been nice. He is a little fussier today because the poor guy has not eaten yet. He is starting to get pretty hungry. They are in doing an echo-cardiogram right now and with it should come some mild sedation. I think this will be good and help calm him down a little. His Uncle Jon and Aunt Angi came to visit and he enjoyed meeting them. I have spoken with both Dr. Su (our cardiologist) and Dr. Kaza (the surgeon) today. They walked us through the procedure again and answered our questions. I feel so blessed to have my son treated by such talented people. They have been both compassionate and realistic with us which we really appreciate. Right now we are just bracing ourselves to see our cute little baby come out of surgery tomorrow with an open chest and wires everywhere. Spending time with him it is easy to pretend nothing is wrong. I sat and watched him this morning and wondered if he really only had half a heart. He does and so we will put our trust in the Lord and these great people who he has blessed with such talent to take care of him. Your thoughts and prayers are very much appreciated and we tell Jackson all the time about all of the people who are looking out for him.

Clip of Jack

Surgery Scheduled for Friday Morning

We found out this evening that Jackson’s surgery is scheduled for Friday morning. He is first on the schedule so they will begin around 7:30 a.m. The surgery should last approximately 6 hours or so and will be performed by a new surgeon at Primary’s, Dr. A.K. Kaza. He’s new to Primary’s, but transferred here a month ago from Boston which is supposed to be one of the top hospitals for treating HLHS in the U.S. so we feel really good about it. He’s done this procedure many, many times and while he was very realistic about the seriousness and difficulty of the procedure, I think he’s the right man for the job.

Everyone’s prayers worked so great for the delivery which went fantastic, we’re hoping you’ll all continue to pray for little Jack as he now faces the really tough stuff which starts on Friday.

Visiting

Anyone interested in coming for a visit is welcome to stop by Primary’s tomorrow. Just give me or Hardy a call or email so we can come meet you. Only 2 people can be in with Jack at a time, and one of them has to be a parent, so it helps if we can coordinate so everyone isn’t there at the same time. Also, the NICU is closed between 6:30 and 7:30 both AM and PM while the nursing staff changes over.

After his surgery on Friday Jack’s chest will be open and he will be pretty swollen so we will be limiting visitors for a few days (family and those who have had kids in the PICU only, please), but you can still come hang out with me and Hardy – we just won’t get to introduce you to Jack ‘til he’s doing a little better.

I apologize to those who have tried to call or text me – I have had no cell phone coverage in the hospital and haven’t been overly mobile to wander and find a hot spot. I get discharged Thursday morning though so I’ll try to return and answer some calls.

A Name and a Blessing

Tonight we gave Jack a Name and a Blessing (a special ordinance in our church). Typically this is something done when babies are a few weeks old, but we thought we better do it before his surgery. Hardy gave him the most beautiful blessing. We were all pretty emotional as he began, but the Spirit was so strong in the room and brought such peace. It was very special.

Milestones and a Bonus

Earlier today my mom came out for a visit and she and I sat with Jack for a while. The medicine he is on to keep his heart working tends to make him ache and get the chills (kind of like having the flu). I learned how to properly sooth him by placing a firm, gentle hand on his head rather than stroking so I was able to help comfort him. Then he gave out a tiny and sad but wonderful little cry. It was the first time I had heard him cry since he first popped out and it was so wonderful I cried myself. He also woke up a few times so we got to see him with his eyes open.

And you would never believe which one of us changed the first diaper! That’s right – Mr. “I am physically unable to change a diaper” Hardy! It was only wet, but he did it. And Jack even peed on him.

Then tonight for a special bonus, I got to help give Jack a bath! It was just a little sponge bath rub down, and really the nurse did most of it, but it was so nice to feel like I’m actually doing something to help care for my child. Jack cried and squirmed, but Hardy held in his pacifier which he can’t get enough of and he did great. It has been an awesome day with Jack.

Aimee and I were lucky enough to spend most of the morning with our darling son. He is doing pretty well today. They gave him some medicine that can give him some flu like symptoms so he is a little irritable but overall is doing very well. We feel very refreshed today. Thanks to some wonderful friends (Chilton’s, Christensen’s and others) we were able to get a room at the University Guest House. Since I slept a total of 45 minutes the night before it was great to have a good place to go sleep. I came over this morning and spent some time with Jack and then came up to get Aimee to take her down to see the baby.

Dr. Su, the cardiologist, came up while we were there. The man has the aura of a genius, which of course he is. He answered a lot of our questions. The cardiology team met this morning to review Jack’s case and they are planning on surgery on Friday or Monday. The good news was that the results of echo cardiogram looked good (except for the two chamber heart, of course) and that they are optimistic that the surgeries can work. Aimee and I are starting to buckle down and realize that this is really going to be a long road. Luckily now we can start to see how rewarding it can be. We are so grateful for everyone’s support and kind thoughts and comments. It is truly overwhelming and makes me want to do better at expressing encouragement to those who need it.

Here are some more pics of the little guy.

We Promised Photos

The Stats

Born: 7:54 a.m.
Weight: 7 lbs. 2 oz.
Length: 19.75 inches

Best line of the day: By Hardy's mom as we anxiously waited over 2 hours for the Life Flight Team to bring him by the room, directed at the nurses coming and going.

"If you haven't got a baby, don't bother coming in."

Day 1

Hardy and I went over to say goodnight to sweet Jack and he is doing so great. It's hard to believe anything could possibly be wrong with him that would require him to be in the NICU. He just sleeps and grunts and does everything that a newborn should do. His feet were a little blue earlier today, but that has now gone away and looks perfect. I just want to scoop him up and bring him back to my room with me. Well, maybe tomorrow night. I think Hardy and I could both use a good night's rest. Poor Hardy has spent most of the day shuttling family and friends back and forth between my hospital room and the NICU so they can see Jack and it's not a short distance. And as for me, I feel quite good, I'm just pooped and wish they would stop checking my vitals every few hours so I could rest.

All three of us are doing great though, and we look forward to tomorrow when we can get more answers and information and start the day refreshed and rested.

Sweet dreams little Jack!

Jacksons pictures

Welcome Jackson!

Jackson Thomas Hardy arrived safely today at 7:54 AM. His mother did a great job during the labor and I (Hardy) even watched the actual birth without passing out. After a short visit with his parents (20 seconds) he was passed through to the NICU. They spent two hours getting him ready to be transferred to Primary Children’s. Before he left he was able to come and spend some time with his Parents and Grandparents. The Life Flight team was fantastic and even let Aimee hold the little guy for a few minutes before he left. I walked Jackson over to Primary Children’s where they got him stabilized and started to take a look at that little heart of his. The Cardiologist team will meet tomorrow to schedule their course of action. Aimee and I are overwhelmed by everyone’s expression of love and support. We particularly want to thank our wonderful Dr. Erin Clark for her loving attention. We consider ourselves very lucky to have her care for us and she made us feel so comfortable. We ask for your continued prayers for the surgery that will happen in the coming days.

Pictures coming soon.

The Big Day

Well, today is the big day. I can’t believe it’s already here. For the most part we are pretty calm, but I know I’m going to be doing a lot of pacing and toe tapping between now and this evening when we go to the hospital.

It’s all a bit scary, but for the most part I think we are ready to meet this little guy and begin to face the challenges ahead rather than worry and anticipate. In some ways my biggest fear right now is that when we call tonight they will tell us they don’t have a bed for us and we will have to continue to stress for a little longer. I know everything is going to turn out just the way it is supposed to though. Of that I have no doubt. Since everything that is about to come is out of my hands, I'm putting my trust in a greater power.

"Trust in the Lord with all thine heart: and lean not unto thine own understanding. In all thy ways acknowledge him, and he shall direct thy paths." (Proverbs 3:5-6)

We are so thankful to all those who are praying for Jack and who fasted with us yesterday. I know that it is those prayers that are keeping us so calm and sane.

The next time we post it will hopefully be to announce Jack’s safe arrival.