The Oxygen Dance

Yesterday I decided that Jack and I needed an outing that didn't include a hospital or doctors office so I packed him up and we wandered around Tai Pan Trading. Emboldened by Jack's good progress and great sats at the hospital I decided to take him without his oxygen . Yes, I took it right off his face and left it all at home.

Holy Cow! What a difference! Do you have any idea how much easier it is to get around when all you have to bring is a baby and a diaper bag? I had no idea getting out about could be so simple. I seriously almost cried with glee. No tripping over cords or getting tangled picking him up. It was a freedom I didn't know exsisted. When we got home I carried him upstairs and didn't have to dance and twirl to make sure we got to the top with enough slack to get to whatever room we were headed to. Truly amazing. I am counting down the days to our post-op appointment next week and praying they tell us to chuck the oxygen for good!

A Happy Boy

As you can see from the pictures, Jack no longer has his feeding tube. He finally remembered that he likes eating so I pulled it on Tuesday. He has done fine ever since. I tried switching him to Tylenol instead of lortab for his pain management since I think it was the lortab that gave him the oral aversion, but he seemed to really be hurting yesterday so I've had to throw some motrin into the mix.

Other than that he is doing just great. He loves looking at his toes and has started giggling again. He's a new man

Video clip

I was downloading our videos from the camcorder to our computer tonight and rediscovered this clip of Jack at the hospital 2 days before his surgery. I forgot how hilarious he was. So cute I had to share, even if it's now out of date.

Our carefree, giggly Jack isn't quite back yet, but then again, he's lost a lilttle bit of that innocence and may never quite be the same. We are definitely getting a lot more smiles these days though. He's starting to chat again, and just 1 week after open heart surgery and he's already trying to roll over again and wants to sit up on his own. What a guy.

Giggles at the hospital

Happy to be home

As suspected, Jack is eating much better now that we are home. He still poops out before he gets quite enough in him so I have to gavage the rest, but at least he's now opening his mouth for the bottle instead of locking his stubborn little lips. I'm also really enjoying having the tube to give him his meds. He REALLY hates the taste of lortab and this way I can just slip it in without him even knowing.

It was so great last night to be able to rock my sweet baby to sleep and get up with him the one time he woke up for pain meds. The nurses at PCMC are great, but I much prefer being able to care for him myself.

Here is Jack getting his blood pressure taken by the tech for the bazillionth time during his hospital stay.
He's definitely lost some of his chub, but hopefully it will come back soon.

Very happy to be home with his toys.

Home!

We made it!

Linda, the NP, finally signed our discharge papers and sent us home this morning. Jack still won't eat so he has a feeding tube, but we're hopeful that he will eat better now that he's home, and if not, we're pros at the tube. It makes it much easier to get down that nasty lortab. He's still on a little oxygen, but just until his post-op appointment in a week and a half. Wahoo!

It is so good to be home!

Another day

I told you the rule is to never say the "H" word. Hardy and I were so disappointed today when they told us they were keeping us one more day. I know it's only been a week and a half, but when they aren't really doing anything but monitoring his feeding it makes for really long days. Seriously, I can watch him not eat at home. For the past few days he hasn't been eating enough, so last night we gave in and put the feeding tube back in. Well, ever since then he won't even put a bottle in his mouth. He would start crying every time he even saw a bottle. Tonight I decided to pull the feeding tube and get tricky. After screaming at the bottle for a few mintues he fell asleep so I switched out his binky for the bottle. As he slept he eventually ate all 3 ounces! That at least bought him until his next feeding before they have to put the tube back in.

Jack started wiggling and kicking around today, which was so good to see. He was showing off for the nurses and our heart friend Marshall's mommy, Marcy. Pretty cute. He also finally wants to snuggle and be held. Until today he has been too sore to snuggle for more than a few mintues at a time, but today he took a good 2 hour nap in my arms. We (I) enjoyed that.

Each day gets a little better. If only he would eat...

P.S. I do have pictures on my camera, I'm just too tired to download them at the moment. Maybe tomorrow.

0 for 2

Jack is 0 for 2 with the bottle today. He is just not digging it. We are starting to get a little concerned but we knew that some kids struggled after surgery with feeding. It is a little surprising because he was such a good eater before his surgery. We are resigned that we are going to go home on the feeding tube and we are hoping we can slowly ween him off of that and get him back to taking a bottle. On a positive note he is much happier today then he has been since his surgery. He is kicking and wiggling and even smiling once in a while. The nurses don't seem too concerned about the eating so we won't freak out quite yet.

Eat Jack Eat!

Jack has decided he is enjoying his hospital stay so much he would like it to continue for another day. He will not take his bottle. They put in the dreaded feeding tube last night so they could get some food in his little tummy but he either takes about half the bottle and then poops out or takes nothing at all. The Speech Therapist is gong to come by today to try and get him going. He is starting to give some smiles and seems to be happier than a few days ago but he still gives Aimee and I a "Why did you send me in there" look once in a while. We are trying to stay patient but we want to go home so bad. The good news is his heart function looks good. The non-eating thing can be caused by some different things and it is not unusual that they don't eat very good after surgery so we are hoping it will start to improve.

Sticking Around

Jack isn't having the greatest day. His heart function and sats look great. They even had him off the oxygen when we got here this morning, though we have since put him back on .12 liter.

The problem is that he seems to just feel yucky and as a result he's not eating. The nurse is fixing him a bottle right now and he has one last chance to eat well before we have to resort to the feeding tube. I keep telling him that a good appetite is his ticket out of this place, but he just doesn't want it. I dread the thought of having to go home with the feeding tube, but I also don't want him to waste away and lose his cute chunky thighs. He's also not sleeping very well. Just half cat naps, so he's exhausted.

As a result, they have decided that we aren't going home tonight, so we'll cross our fingers for tomorrow.

Uneventful Day

Jack had a pretty good, uneventful day today. He didn't want to be held at all, but he finally wanted to play with his duck and puppy a little bit. He's still not eating much but I was able to coax a few ounces down him here and there. They aren't worried enough to want to send him home on a tube or anything and are attributing it to him not feeling well, but I hate seeing my little eater not have any interest in taking a bottle.

The only things I can see that might keep us there until Saturday are if they see something wrong on the echo tomorrow, or if he doesn't start peeing better. He has hardly had any wet diapers today, but that's partly because he's started to clench his lips and spit out his lortab and lasix (the medicine which helps him pee). Little stinker. Hopefully the nurse tonight will do a better job at getting the meds to stay in his mouth than I did.

His poor neck where they took out the jugular line.

Snuggling with Daddy.

The hotel where Hardy and I were staying was sold out last night and tonight so we have been staying at home, and while it is lonely and strange being here without Jack, it sure is nice to have my own shower and a closet full of clean laundry.

The "H" Word

You never use the word "Home" around here as it tends to be a jinx, but...

Every day Jack is more and more himself. When I arrived this morning I got a little bit of a smile, and he finally wants to play with his toys again. He's not loving being held for very long as it seems to make him uncomfortable, but he's happy as a clam in his crib.

Dr. Kaza stops by a few times a day to check on him, which is one of the reasons we think he's the best. I talked with him a few minutes ago and he said we might get to go home tomorrow after they do an echo and make sure everything looks ok. If not tomorrow then Saturday. It does make me a little nervous to go home while Jack is still hurting so much, but I know we'll all rest a little easier without so much craziness around.

A few Pics

No more tube or wires!
Jack is so happy to be out of the PICU. He's been asleep since we got to the 3rd floor.

(Check out the cute little toe poking out the blanket. Too cute.)

Out of the PICU

Jack is doing so great that they kicked us out of the PICU this afternoon. We're now in room 3087 if anyone wants to come visit.

He got the last drainage tube, his ART line and pacer wires out earlier today, and Jess, everyone's favorite tech, gave him a bath. His nurse even mixed his nasty lortab with some rootbeer flavoring, so he's now fast asleep and feeling good. He hasn't been feeding very well for the past 12 hours, but we're working on it. I think his throat just hurts a little from the ventilator. He's also still trying to cough up some crud (also from the ventilator) but it hurts his poor little chest to cough and he's cries the most heart breaking little pained cry. Other than that he's been a rock star.

We still haven't seen any smiles yet and he's pretty sore, but he looks better every hour.

A good night

Jack had a pretty good night last night. He is just snuggling with Aimee right now. He has started to not enjoy his bottle. They might order a swallow study if this continues but they don't seem to be overly concerned. Jack was thrilled when Dad returned last night and told him the Titans had pulled out a huge win last night against West! He is looking forward to going to some games after he gets better.

Awake and doing great

It took a little while, but Jack finally woke up and ate a bottle this afternoon. The nurses have said that the Glenn usually makes babies super grumpy since it triples the pressure of the blood in their head and gives them awful headaches, but Jack seems to be coping with it like he's got a hang over. He's a little spacey and drifting in and out of sleep, but overall he's doing really well.

Dr. Kaza has come by quite a few times today to check on Jack. His murmur was louder this morning then they thought it should be so he ordered an echo to see if there was some leakage which is why he is in such an uncomfortable position in this picture. Everything looked good though and Dr. Kaza said that he feels really good about things, so I feel good about that.

Jack and I also got a little snuggle time, which we both enjoyed. Ok, probably me more than him since getting moved around was a little painful for him 1 day post-op.

Extubated

I called the nurse around 4:00 this morning and she said that Jack woke up around 1AM and was done being on the ventialtor. Dr Kaza had called last night and told them to get him off the vent soon, but the Resident wasn't planning to do it until morning. Well, Jack agreed with Dr. Kaza and started pulling on it so they extubated him shortly after he woke up. The nurse gave him some morphine and a binky and he's been resting peacefully ever since.

As soon as he wakes up we are going to try giving him some pedialite, and if he keeps that down then we'll give him a bottle. I bet that will make him a happy camper.

They are also planning to start pulling lines early this afternoon. First his jugular line, then the RA, and finally 2 of the 3 drains. Once those are out we can hold him! Oh I can't wait for a good snuggle with my baby boy. With the lines out, we could even concievably be sent to the 3rd floor. Most likely we'll make the move tomorrow, but tonight is a possibility. It's crazy how much faster things are moving this time.

P.S. His one eye looks a little red, but when I asked the nurse she said he had been rubbing his eyes really hard, so it's self-inflicted.

Doing Well

Sweet Jack is just resting peacefully at the moment. His blood pressure is a little higher than they would like it so they are keeping him pretty sedated for a while longer and trying to get that under control. I can tell that he is coming around a little though because he's sucking on his ventilator tube like a binky and licking his lips when they wet them down with the flavorful little pink sponges.

Dr. Kaza said that his heart function looks great, his valves aren't leaking, and he was able to fix his narrowed pulomary artery so we are so happy about all of that. The next 24 hours are critical, but he's doing great. Dr Kaza did a Glenn surgery last week and they were able to go home in just 4 days. We like the sound of that and have told Jack that he is welcome to follow a similar plan, especially since we tacked on a few bonus days at the beginning.

We are just so happy to have this surgery behind us. Now we can begin healing and move forward.

Pictures

Last Night...

Today...

Resting!

We got to see Jack! He is out of surgery and resting in the PICU. He is still very sedated. They think things are looking pretty good. His Blood Pressure is a little high but it has started to come down. We will post a picture a little later but I don't think he looks nearly as bad as he did after his first surgery. Of course, we are just so happy to see him that I don't think it would really matter what he looks like. They are going to monitor him closely over the next little while and if all goes well they will take him off the ventilator in the morning.

Done

Jack is all closed up and we should be able to see him in the PICU within the next half hour. We are just waiting for Dr. Kaza to come give us the run down in a few minutes.

Whew!

Almost Done

Annie just came out and said that they are done with the repair. They are doing an echo right now to check on the function, and they still have to finish putting in the lines and drains, but hopefully they'll be able to close him up soon and then we'll be able to go back and see him.

On Bypass

Annie, the Nurse Practitioner, just came out with our first update. Jack is now on the bypass machine and doing great. She said the nurses even told her that he was so nice and didn't fuss a bit as they were getting him ready and putting him under. What a champ.

We should get another update in about an hour.

The Day has Come

We just got done sending Jack into surgery. While it was extremely difficult Aimee and I are amazed at the peace we feel. Jack was smiling and happy this morning and we just know he is going to be all right. I won't say it was easy sending him away but we know it is the only way he can get better and stay with us. Dr. Kaza came up and spent some time with us this morning. He answered all of our questions and walked us through what he would be doing this morning. He said the operation is relatively simple. Simple is a little extreme for us but we have full confidence in Dr. Kaza and know that he will take such good care of Jack. He was very calm and re-assuring. Jack is truly a special little guy. Somehow I get the impression that in that little body is an understanding of this trial that is far greater than ours. This journey is truly Jack's and we feel blessed to be along for the ride. They will start updating us after they get started and we will try and post as we go. Thank you for everyone's love and support.

Still Smilin'

Jack's still doing great today. We're just trying to get our fill of loves and snuggles before they take him away tomorrow morning.

Please keep him in your prayers and we'll keep the blog updated as the day goes on. His surgery is scheduled to begin at 7:30 a.m.

Still the same

Not much new today. Jack is being as good as can be. We took some pretty funny video of him just chuckling, but since this hospital stay was unplanned I don't have the camera cords here at the hospital. His sats are still fluctuating, but looking okay and he should make it until Monday. If not, they are ready to roll at any time.

As unfun as it is for us to get a few extra days in the hospital, we're relieved that he's where he needs to be, and in some ways I think it wil be easier to let him go into surgery on Monday knowing how sick he really is vs handing over our perfectly healthy looking baby. I think we're ready for Monday though so we can begin healing and get this little guy better.

Monday morning

We talked with Dr. Kaza today and sweet Jack is scheduled for his surgery first thing Monday morning. Not a moment too soon. His noisy heart is noisier than ever. They are also keeping a close eye on him to make sure we don't need to do it even sooner, but I think he'll make it until Monday. It was a little rough this morning, but he's doing better now.

Through it all Jack has been quite the trooper. He loves having extra tubes and cords to pull on, and he does his best to entertain the nurses with his busy feet that make it hard for the pule ox machine to get a good reading.

Jack doesn't have any labs or tests scheduled for tonight so I think Hardy and I are going to leave him in the good care of the nurses and both sleep in our hotel room 2 minutes down the road. It's hard to leave but will be so nice to sleep.

Sooner rather than Later

Well, what we were hoping was going to just be an overnight stay is now a stay for the long haul. The cardiologists came by this morning and said Dr. Hawkins is trying to reschedule his surgery hopefully for Monday morning and either he or Dr. Kaza will do the surgery. (We knew that's when it was supposed to be). His sats are fluctuating so much and his shunt is so narrowed that they want us to stay here through the weekend so they can keep an eye on him.

Jack had an ok night. He ate well and slept decently, except for when they tortured him. They needed to get some blood for some tests and it wound up taking 5 sticks, plus lots of digging around to get enough. He was absolutely screaming bloody murder. Then they came in a few hours later and informed me that they needed more for another test so they had to stick him again. Then this morning the nurse felt so bad when she had to tell me that the first blood they worked so hard to get was mislabled (not her fault) and they wouldn't do the test on it and we had to do another blood draw. Thankfully though she waited until the IV team had a shift change so we could get someone decent to do it this time and they got it in the first try. Jack and I were not happy campers about all of this, and I'm sure our neighbors weren't big fans of all the screaming either.

Poor little fellow. He's taking a well deserved nap at the moment, and mom could use one as well. Good thing it's Hardy's turn to sleep on the oh so comfy pull out chair tonight.

MRI and a Sleepover

Jack had his MRI this afternoon. Things were going well until he woke up and his sats dropped. They cranked his oxygen up as high as 3 liters and he was still only in the 60's so Dr. Menon ordered an immediate echo to see if his shunt was blocked. It looked like there is still flow getting through, but it's not what they would like it to be. At one point during the echo the tech had to stop because Jack was turning dusky and was in the 40's. After the echo we got him to sleep for a lilttle while and he got back in the 80's on 1.5 liters, but as soon as he woke up he was back down in the 60's even after we turned him back up to 2 liters.

The result...they decided to admit him and we are going to see what happens over night and discuss moving up his surgery with Dr. Kaza in the morning. We may get our Monday slot again after all. This is exactly what they expect will happen eventually which is why he needs this next surgery, I guess we just waited a week too long.

I just ran home to pack a bag and head back up for a sleepover. The good news is that Kylie got moved from the PICU to the 3rd floor this afternoon so at least we have a friend to play with.

P.S. - The MRI showed that everything looked pretty good except his pulmunary arteries which are a little small, but they plan to fix that during his Glenn. Dr. Menon also said that his aorta appears to be small. He hopes that it will grow on its own since there is nothing they can do about it right now. It should be fine, but it's something to keep an eye on.

So close

Jumping Jack

Prayers for Kylie

Jack's heart buddy Kylie is going in for her Glenn surgery Tuesday morning. She has HLHS and was born just a month after Jack. She has been doing really well and is such a cutie, but like Jack, it's time for this next step. Her mom Chrissie and I have spent a lot of time talking and emailing, keeping each other sane.

I know she's going to do great tomorrow and will be out of the hospital in no time (we hope you're gone by the time we get there), but sending your baby off for open heart surgery is so awful and scary, no matter how confident the doctors are. At that moment you have to put yourself 100% in God's hands and trust that he knows the end from the beginning and is watching over your precious little one.

Our prayers are with you!

What a cute boy

I just can't help taking cute naked baby pictures. Such a sweetie.

Back on the schedule

Jack's surgery is back on and now scheduled for January 23rd.

Dr. Kaza is leaving town for a conference Jan 25-28 so I didn't think we were going to be able to do it until he got back, but he has decided to do it on Friday before he goes. I am relieved, but also nervous again.

One day at a time....

Postponed

Ughh...Jack's surgery has been postponed due to scheduling. We don't have the new date yet, but I'm guessing maybe the 29th. We'll see. Very frustrating.

Two more weeks and Basketball

Just two more weeks until Jack's surgery and naturally we are getting a bit jittery. I have faith that everything is going to be okay, but it's still scary. The only good news is that several other heart families we have met are going to be there at the same time, so that will help.

Thankfully Jack doesn't seem too worried about it and is cute as ever.

Jack got to watch his first High School basketball game last Friday, and he did great. Hardy is a coach so Jack will get to attend many of these games in his lifetime. He loved watching the action and just sat calmly and happily on my lap. Then around the 4th quarter he got hungry so I gave him a bottle and he fell asleep. What a trooper. I have a feeling next years games will be much more wiggly.