11/17/18 Road to recovery

Pain management was the story of the night for Judah, keeping him comfortable despite a steady stream of doctors and nurses coming to check on him. But after making it through that first night, and only waking up about every 2 hours to ask for more medicine and ask where daddy was (mommy took the first night sleepover while daddy went home), today has been a lot better. Judah is awake and fully aware today, and wants nothing more than to get out of bed. Continue reading

11/16/18 Surgery day – all done

Surgery is complete. Judah did fantastically today. His amazing team said everything went very smoothly, with the main part – the conduit replacement procedure taking about 3 hours. Judah went on and came off intubation and heart/lung bypass without issue, and they were able to implant a 16mm homograft conduit to replace his 10mm conduit placed when he was just 6 months old.

The plan for tonight is to rest, and manage his pain. Although he still has a few IVs, a central line, plenty of drainage tubes and more, he is sleeping comfortably and looks great. Tomorrow we will begin our recovery for real, and continued pain management as he starts to wake up a bit through the night and morning.

We honestly and truly appreciate all the love, support, prayers, and good vibes sent our way today. We definitely felt the love, and know Judah did too. More to come as we rest and begin to heal in the coming days.

All our love


3/23/16 – Springing Forward!


After a bit of a rocky start of life without a trach, Judah is healing and working hard toward going home!

So Judah, post extubation, retained A LOT of fluid, mostly around his lungs. He also required hefty doses of morphine while intubated, so withdrawal was very tough on him. However, this week he has turned a HUGE corner, kicked off the withdrawal and extra fluid and doesn’t need anymore oxygen! So now we really get to see Judah without tubes, wires or a TRACH!!! Continue reading

3/20/16 – Forward and Back

Recovery is a process! Some things are easy, and some things take much longer.

Judah is having his “usual” recovery issues – he tends to retain a lot of fluid, particularly in his lungs. That makes breathing harder to do, and there are some non-invasive ways of dealing with that, and some more invasive ways if we need to. So far, we’re trying some diuretics and it seems to be helping. We’ll have to see if Judah needs any more help in getting rid of excess fluid.

He’s also still on quite a cocktail, and may be for several weeks. He spent a LOT of time on a very high dose of several addictive medications, so it’s a process to come off of them. Continue reading

3/17/16 – Irish you were here!

Happy St. Paddy’s Day!

Judah is celebrating in true Irish form – deep in withdrawal. Aside from the timed out bouts of discomfort, Judah is plowing headfirst into feeling better, as our Judah always does. He has no time for anything that stands in his way of playtime. He has even been pointing out the window at the sunny sky, telling me he wants to go outside. Continue reading

3/15/16 – Bye Bye tube, hello withdrawal

We finally said goodbye to Judah’s breathing tube!

I wish I could say it’s been smooth sailing, but the past two days have been rocky. Judah’s throat, nose and adenoids have been very irritated by the breathing tube, causing a lot of bleeding. He’s been moved from heavy narcotics to weaning drugs, causing him a lot of hard withdrawal symptoms. And extubation was pretty scary. Continue reading

3/13/16 – So Close!

So Judah is STILL sedated (ish). Tomorrow morning at 11:30, the surgeons will examine his reconstruction and size down his breathing tube if everything looks as it should. Then, if all is going well, the breathing tube will come out on Tuesday and hopefully we can say goodbye to all the crazy meds and see how he does with no trach at all! I’m hoping things get very loud this week.

I say sedated(ish) because Judah is our little warrior and still fighting like a champion! Continue reading

3/10/16 – Sedation and Chill

It’s Thursday!!!

Judah has been sedated for nearly a week at this point, and even though I’ve been right by his side, I miss him terribly. Though as I sit by his bedside, I think of all the mothers who have watched over their ill and healing loved ones throughout the ages, and I’m proud to carry on this ancient tradition. We have a lot more help these days, but Mom’s always here to make sure things are ok. That’s universal and timeless. Continue reading

Monday 9/15 – Cooler Weather and Turning Two!

Summer started off with a few rounds of sickness for Judah, but as the summer hit its stride and came to a close, Judah has been healthy and happy. With lots of playtime outside, at the park, and various outings and trips around town and beyond, Judah’s 2nd summer was a lot of fun for all of us. The last few weeks have even included another trip up to Gramma and Grampa Jones’ house, the annual Heart-to-Heart picnic, and Judah turning 2 years old!

Continue reading

Tuesday 11/26 – Thanksgiving and Winter approach

Welcome back and thanks for joining J-N-J again for another update on adorable and amazing baby Judah. Since Judah’s last update back in October, he has come a long way with lots of fun news to share! Judah got to have his first Halloween outside of the hospital, his first trip to the Zoo, his first Dentist appointment, lots of new developmental milestones, and later this week Judah will be featured in another news story, this time on our local NBC affiliate, WPXI – Channel 11! Continue reading

Saturday 3/16

When we returned to the CICU following Judah’s most recent surgery just 12 days ago, we were welcomed back into a room we have spent a lot of time in, the same room we were in after Judah was readmitted from The Children’s Institute back in November. The room we spent over 45 days in after Judah has his first cath, and subsequently his cardiac arrest, ECMO, and Tracheostomy. Despite all of the things that have happened in this room, we have also spent a lot of time healing, recovering, and growing in this room, and that is exactly what we want to happen in there now. Judah continues to rest and recover in this room once again. Continue reading

Sunday 3/10 – 6 Months old!

Our little Judah bear is truly a rock star! Every day since his surgery has been a little better and seen little J progress quickly. After his first major surgery, it took him close to 2 weeks to recover well enough that we were able to hold him, but this time, just 5 days after his surgery he is awake and aware, off all of his post operation medications, and able to sit up, kick and swat at his toys, and even be held and nap in our laps again. He truly is a remarkable kid, and has taken every challenge thrown at him and smiled throughout.  Continue reading

Thursday 3/7

Judah continues to progress smoothly. In the last couple of days the doctors have weaned him off all of the sedatives and painkillers, and he is now resting comfortably and getting only occasional tylenol for pain. The doctors were able to remove all of the IVs except for one central line they will use to draw blood for testing and give medication through. Yesterday they started slowly feeding him with mommy’s breast milk again, and today he is already back up to his normal daily volume. He truly does look good.  Continue reading

Tuesday 3/5 – 24 hours past surgery

After such a crazy day yesterday, last night we went home to try to calm ourselves and rest. Seeing Judah last night was both reassuring and frightening, as at this point we have enough hospital experience to know what we are seeing and people are telling us, but without always fully understanding every detail. We decided last night to leave Judah’s care to the professionals, and to know that he is in the best place possible. Everyone kept telling us how good he looked for being minutes out of surgery, and last night we agreed. Continue reading

Monday 3/4 – 2nd Open Heart Surgery

Thank you all for your incredible outpouring of support, thoughts and prayers today – they surely helped us get through this long and difficult day filled with uncertainty. Judah’s 2nd open heart surgery is now complete. Although it took longer than expected, and once the doctors got Judah opened up they found and fixed some other problems, but overall surgery went well and the team is happy with how it went. Now begins another long road to recovery, but we hope one of the last big steps to getting Judah healthy and ready to go home. Continue reading

Tuesday 10/2

Since yesterday was Judah’s 3 week birthday, that means that today is our 3 week anniversary in the Cardiac Intensive Care Unit. As you all will remember, after spending just one night with mommy and daddy after being born, the next day little baby J was rushed over to Children’s Hospital after a nurse noticed a heart murmur, which led us to learn of the congenital heart defect our little boy had. Continue reading

Sunday 9/30

Another great night and day for little baby bear. Last night both Daddy and Baby slept through the night with minimal crying from either of them. Baby Judah woke up only when nurses would come in to change his diaper or take blood. his heart rate and breathing stayed very good all night, which led the doctors to continue reducing his medications. Continue reading

Saturday 9/29

We are now at 18 days in the ICU, can you believe it? Judah is approaching his 3 week birthday on Monday.

Last night and today continued yesterday’s trend of excellent heart rates, smooth and easy breathing, and a happy, awake, and aware Judahbear. Last night he and Daddy got to sleep through the entire night with minimal wakeups. Continue reading

Thursday 9/27

Today brought a day of ups and downs, mainly in Judah’s heart rate. He has been having a lot of arrhythmias lately, which are basically spikes in high or low heart rates. It’s been a day of irregular heart beats, and doctors trying new things. They even hooked his little heart up to a pacer today to try to keep the rhythms in check. Continue reading

Wednesday 9/26

We prayed for strength this morning, for Judah, for ourselves, and for all of you. May this new year on the Jewish calendar bring everyone that which they’ve waited for. For us, we’ve been waiting to bring our beautiful son home. Every day brings us closer to that goal.

After temple this morning we had a nice and calm day at the hospital. Little Jude’s heart rate has come down a lot from the elevated rates he was having yesterday, today he was in the perfect and normal zone, which made mommy and daddy and all the nurses and doctors happy. Continue reading

Tuesday 9/26

Every road to recovery has a bump or two along the way. Last night Judah hit a bit of a snag in his recovery, when in the middle of the night his heart rate spiked unexpectedly and wouldn’t go down and he began having difficulty breathing, even through the CPAP mask. It continued for a while and the doctors did everything they could to try to make him a little more comfortable, but were forced to remove the mask and put the breathing tube back in, so that he could breathe properly and hopefully slow his heart rate down. Continue reading

Monday 9/24

Our recovery slowed down a little bit today. Judah is still being strong and doing well, but he’s been having a little bit of a difficulty breathing as deeply as he should, so the doctors decided to keep him on a CPAP mask for the day, instead of the high flow tube under his nose. This is a minor speedbump on his road to recovery, but the extra monitoring may have set him back a day in getting out of the ICU. Continue reading

Sunday 9/23

Big things happening in the CICU today. When mommy and daddy came to visit our little WonderBear today, he was awake for the first time. This afternoon the nurses removed his ventilator tube, and said he was doing very well. his recovery is really starting to take shape, as every day he looks far better than the day before. Continue reading

Saturday 9/22

Another day of checking in on Judah and following his recovery. Today he moved forward yet again, and was able to come off of several of his IV drips. He is still on the ventilator today, but the nurses told us that they’ve been lowering the amount of air going in as his body takes over. They want to keep him on the ventilator just one more night to keep an eye on him and make sure they don’t take him off too early. Continue reading

Friday 9/21

Updates have slowed down a little bit for now as there is not too much happening on the surface, however every day is another big step in the road to recovery.

This morning they closed up Judah’s chest. It was kept open to help the body cope with swelling which normally happens after an open heart surgery. Generally the doctors expect this to last 24-48 hours, and for him it was on the lower end. The doctors and nurses are telling us that he is recovering very well, he’s beating the average expectations for the steps he has to take. Continue reading

Thursday 9/20

It’s smooth sailing so far in the return to CICU for recovery. Judah finished up a major step in the healing process today – a lot sooner than Mommy and Daddy expected! After heart surgery the doctors generally will leave the chest open for a period of time, but today they decided he was recovering so well that they closed his chest back up early. They will continue to monitor him over the next 24-48 hours before removing the remaining IVs and ventilators and allow his heart and lungs to regain full strength. The nurses made a special note about how strong little Judah is. We should be able to hold him again by early next week, and hopefully he continues to heal up faster and faster so we can all be happy and healthy at home. Continue reading

Surgery is Complete!

We spent the morning after Judah went in to surgery just hanging out in the room, collecting our thoughts, keeping ourselves busy.

Judah was taken back into the surgical room at 11:30am to begin pre-op, getting all the IV lines placed, placing him on heart/lung machines to take over for his organs while he is being operated on, and at 12:30 the doctor came in and made the first incision. Continue reading