The posts below are a chronicling of my life so far of growing up with a heart defect. If you’re new to my page and want the whole story, start at the end, as the most recent updates are always first. To be notified by email automatically when a new update is posted, enter your email address in the box to the right and click the “Subscribe” button, or
Where truly has the time gone! Since Judah’s surgery to remove his trach tube back in March, and his recovery over the next month, we have been so busy enjoying our new life and rapidly growing child that we haven’t even had a chance to update all of you on his amazing improvements! In the last couple of months Judah has truly thrived, grown so much, and really turned into such a grown up kid right before our eyes. Judah continues to do fantastically, and our sincere apologies for the lack of updates. But as is often the case, no news is good news, and the fact that we haven’t had a major update means there has been nothing bad, so here we go with an update of how much we’ve healed, recovered, and grown over the last few months! Continue reading
One week ago today Judah was discharged from the hospital – and minus an overnight trip back to Cincinnati for a follow up scope we have been home resting, healing, and getting used to this new trach-free lifestyle. Continue reading
The news is in! They want to kick us out of here on Sunday morning!
Judah will be coming home with a pretty big list of health concerns, and needs to be followed closely by our Cardiologists in Pittsburgh, but once he gets out of a hospital bed, a LOT will surely improve quickly. Continue reading
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
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
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
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
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
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
Quick update for family, friends, and fans
As Judah’s nurses might expect, his tummy and his need to get out of bed are the biggest issues. Even though he is LIQUORED UP, our little bear fights through it and tries to move around (BIG no no with the breathing tube). And because he’s got plenty of meds going, his belly has stopped. So he’s getting nutrition in a way that’s a bit more invasive.
But he’s been mostly comfortable this week, and our team is AWESOME at problem solving! Continue reading
The day we have long awaited has finally come, and it went better than we ever could have imagined. Continue reading
As of last night we have arrived in Cincinnati. Now we prepare for the long awaited next steps and Judah’s 2nd attempt at a Laryngotracheal Reconstruction, this time with the amazing team at Children’s Hospital of Cincinnati, bright and early tomorrow morning. Continue reading
Winter has slowed us down a bit in the J-N-J household, most of us have been sick for pretty much the entire month of January, so we’ve just been taking it easy, resting at home as much as possible, practicing our vocalizations, and getting the sickness all out of the way for Spring. We finally received more information and a date for Judah’s LTP laryngotracheal reconstructive surgery in Cincinnati, and it is approaching quickly! Continue reading
After spending 5 nights in Cincinnati, an entire battery of intake and processing at a new hospital, and undergoing various scans, scopes, test, procedures, and meeting with an amazing new team of doctors, we have complete confidence in our new airway team, and a renewed hope for big changes in the Spring. Continue reading
With Halloween and Thanksgiving down, and Winter fast approaching, we give thanks and are grateful for all we have. Tomorrow we embark on another journey, this time to Cincinnati Children’s Hospital to learn what the future holds, and just this week we were privileged with a beautiful sound in our home. Continue reading
September and October brought the most beautiful time of year to Pittsburgh, and plenty of trips out and about near and far! Judah celebrated his 3rd birthday, his first haircut, and his first RV roadtrip out to Iowa to meet so much more of his adoring family. He also had a great cardiology check-up, and we found out when we’ll be heading to Cincinnati Children’s Hospital before the end of the year to get further analysis on Judah’s airway needs. Continue reading
It has been an extremely crazy summer for mommy and daddy at home and at work, but Judah has had lots of playtime, outings, and fun! The major tracheal surgery we were expecting was cancelled, bringing with it the upcoming opportunity to be seen by other specialists at a different hospital, Mommy and Daddy spent their first full day away from Judah while he played with nurses and they attended an out of state wedding, and we look forward to Judah’s upcoming 3rd birthday and our longest and farthest family trip yet! Continue reading
July has been a fun and busy month for Judah! Spending his time at daycare with his friends, playing at home and going to the library and playgrounds with us, his first spray park experience, and just this last week a pretty major airway scope with his ENT surgeon, and his first Cleveland Russian party and overnight stay in a hotel with mommy and daddy!
It has been a while since the last update, and as we always say – no news is good news! Judah has been his normal, happy, playful, hilarious self. We have been enjoying outings all summer long, trips all over town and beyond, and for the most part good health. Continue reading
Although sometimes it certainly felt like Winter was going to last forever, Spring is finally in full swing, and with it comes lots of playing outside, trips back to the parks and playgrounds, and going back to daycare. Spring also means it’s time to follow up with all of Judah’s doctors again. Continue reading
After spending the first 7 months of his life living in a hospital room, enduring multiple surgeries and countless procedures, two years ago today Judah finally came home for the first time. In those two years, he has grown so much, developed faster and smarter than many said he could, and given us an immeasurable amount of smiles, laughs, and love. Every road has bumps along the way, but Judah continues to give us more joy and pride with each passing day. And now that Spring and better weather approach, we can finally get back out into the world again! Continue reading
Welcome back and thank you for bringing your love and checking in on Judah and all of J-N-J. We truly hope everyone had a wonderful end to 2014, and that the new year is treating you all fantastically. Although it has been a while since our last update, of course no news is good news. We have been living, laughing, and loving every day so far in 2015, and are firmly settled in to wintertime in Pittsburgh. Continue reading
In the six weeks or so since the last update, things have been going very smoothly for Judah. He has stayed healthy, happy, playful, and a true joy to everyone who knows or meets him. In the last few weeks the end of Fall has given way to the start of Winter, which brought us Halloween and Thanksgiving, but has also taken away all the pretty leaves outside and left us with colder temperatures and our first taste of snow too. Continue reading
Fall is in full swing in Pittsburgh, and with it comes beautiful colored trees, cooler weather, and of course flu season. As the weather permits around here we continue to try to take Judah out of the house as much as possible, but sadly October brought Judah’s last visit to daycare at The Child’s Way as more and more kids begin to get sick, and with Judah still trached we just can’t risk him catching anything. In addition to some pretty major doctors visits, this last month has brought us many opportunities to get out and play, before the real winter lockdown begins. Continue reading
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!
July was a tough month for Judah, he spent most of it sick and unfortunately had to make several trips to the hospital. Early in the month Judah spent 4 nights at the hospital after getting a cold, and again at the end of the month Judah spent about 2 weeks fighting another sickness, resulting in two trips to the ER and another night in the ICU. In between illnesses and hospital visits, Judah also made his first trip up to Grandma and Grandpa Jones house, and was interviewed for and appeared on the Channel 4 News in a great story about how awesome he is and the amazing Beads of Courage program! Continue reading
The last couple of weeks have brought a lot of outings as summer really kicks into full swing. Judah has been going to the Children’s Museum close to twice a week, to the parks and playgrounds, got to walk with Team Truncus at the 2014 Congenital Heart Walk, and has even started going to day care at the incredible Child’s Way at The Children’s Home. But while all of these outings have been great for Judah, his increased interactions with the world led to his first cold. With Judah’s weakened immune system and heart, a simple cold quickly led us to a 4 day stay in the Intensive Care Unit at Children’s Hospital this week. Continue reading
In one week on Sunday June 29th J-N-J will be walking to raise money and awareness in the 2014 Congenital Heart Walk at the Boathouse in North Park, about 15 miles outside of Pittsburgh. The Congenital Heart Walk is an ongoing national effort between the Adult Congenital Heart Association (ACHA) and The Children’s Heart Foundation (CHF). We walk to honor and remember the millions who have been impacted by congenital heart defects and disease (CHD). If you are able to join us at the walk, we would love to have you join our team, but at the very least if you can please consider making a donation of any kind – even $5 helps tremendously (links below).
The Congenital Heart Walk is the only national event series dedicated to fighting congenital heart disease, with the goal of raising much needed funds to benefit cutting-edge research, patient programs, and advocacy initiatives. Congenital Heart Defects range in complexity, but many babies born with a CHD will require open heart surgery or other interventions to survive. CHDs affect approximately 1 out of 100 children, and are the leading cause of all infant deaths in the US and Worldwide, but only a fraction of a penny of each dollar the government spends on medical funding is directed towards congenital heart defect research. Please help us raise awareness and show support for this incredible cause that has touched us so personally.
If you are thinking about or have already donated, you have our most sincere thanks, not just from us, but from Heart Families everywhere.
Please visit any of the donation links below
Link to Nate’s donation page
Link to Jessica’s donation page
Link to Team Truncus page (please click here if you wish to join our team and walk with us!)
Any donation at all is greatly appreciated and will go to an incredible cause, but please do not feel obligated if you are unable to donate at this time. Your love and support is enough to help us walk proudly.
Judah says “Thank You!”
Gorgeous weather in spring and summer have led to lots of outings, lots of playtimes, and Judah exercising his happy little toddler self all over the place. Judah has gotten to visit several playgrounds, experience running in the grass, and made lots of steps forward (as well as girlfriends) at his new favorite place, the Children’s Museum. In the month and a half since Judah’s LTR reconstructive surgery, he continues to heal very well, and several scopes and additional procedures have given us a good look into his newly constructed airway. Continue reading
It has been just under 2 weeks since Judah left the hospital after the Surgery he had on May 1st to repair and reconstruct his trachea. In that time Judah has come a long way, especially the first few days of being back at home. While not back up to 100% just yet, every day at home was an opportunity to rest and be comfortable – which is much easier when you can sleep in your own bed, hang out outside in the yard, and play with your dog and cat. Continue reading
After the last two days of Judah finally getting all of the heavy medications out of his system and acting a bit more like himself, this morning Judah was in great spirits and we were finally discharged from the hospital to continue our healing and rest at home! Continue reading
Recovery moves slowly sometimes in the CICU, where Judah has been since his surgery back on May 1st. But yesterday and today some major signs of improvement have been seen. Continue reading
Not too many changes going on with Judah the last couple of days. He continues to rest peacefully and heal. Most of the time Judah is medically sedated, but occasionally he will wake up a little bit and try to roll over and get out of bed. Continue reading
Judah is now 24 hours post surgery, and this is the time it is most important for him to rest and heal.
Today was the big day, the first part of Judah’s Laryngotracheal Reconstruction (LTR) surgery. We arrived at the hospital bright and early around 6:15 this morning, got checked in, updated all of Judah’s information, and gave him our last kisses as they took him back to the operating room. Continue reading
It seems like Spring has finally found us in Pittsburgh, though Winter is still putting up an occasional fight. The last few weeks have brought us some nicer weather and the winding down of flu season, allowing Judah to get outside of the house a lot more and have lots of fun. It also brought some big appointments with his airway doctors and cardiologists, and information on what is to come – a Spring and Summer of surgery and recovery, with lots of healing, and most importantly, progress. Continue reading
After spending close to 7 Months in the hospital, exactly one year ago today Judah came home for the first time. Continue reading
February comes and goes, and winter rolls on in Pittsburgh. This has been a relatively slow month for Judah and his doctors appointments since his sleep study earlier this month, but that doesn’t mean there haven’t been plenty of changes. Continue reading
It has been the coldest January on record in 20 years here in Pittsburgh, which means a lot of staying at home in the cozy warm. Judah has truly become a toddler in this last month, realizing how his actions and emotions can affect us and make him get his way. Judah has thrown a few of the most adorable temper tantrums, but at the same time he has made some incredible strides in his communication. He also had a few major doctors appointments and follow-ups, which will help us shape the timeline of things to come. Continue reading
As we reflect back on 2013, it is truly incredible to see how far we’ve all come. Thank you all for the immeasurable amount of love and support you have given, and continue to give us. We wish nothing but love, health and happiness for all of you in 2014.
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
It took a while for all of us to recover after Judah’s big Birthday Bash 3 weeks ago, and every day after the party for the next week or so, Judah would wake up in the morning ready to head right back to the festivities. Little J is usually in a good mood, but after the party and all of the people and playing and fun times and celebration, Judah was in fantastic spirits. It made all of us so happy to be able to see everyone that made it out for the party – friends old and new – and truly warmed our hearts at all of the donations and love that was given.
Since the birthday, we have had a pretty fun and busy October. Judah has been enjoying watching the seasons change from Summer to Fall. Continue reading
We would first like to thank all of our family, friends, supporters, and everyone who made it out to Judah’s big birthday bash yesterday, The Children’s Home of Pittsburgh for hosting us, and Icing Smiles and Bappy Cakes Bakery for an incredible Dream Cake, but we also want to thank all of the people who wanted to but couldn’t make it and sent their love and good wishes from afar. The bash was a grand success! Continue reading
One year ago today, Judah arrived into this world. He was beautiful and sweet and adorable and perfect. Mommy, daddy, and baby spent that first night in the hospital together. After about 15 hours of labor it was a night to rest in the bliss and peacefulness, and to enjoy spending that night with our first child. Both mommy and daddy have fond memories of that first night, knowing how our lives had changed and we had brought this incredible bundle of joy into existence. Continue reading
For the first time in Judah’s life, he was able to go two full weeks without a doctors appointment or hospital visit. August has been very nice to Judah, and these last two weeks have given him a lot of time to just play and have fun and be a regular baby. Unfortunately due to two of our day shift nurses currently out Continue reading
Judah here, I’m so excited for my upcoming 1st birthday and the Big Bash mommy and daddy are planning for me! I can’t believe i’m almost 1 year old! To celebrate me and my journey through the first year, please try to come and join us from 11am to 3pm at The Children’s Home of Pittsburgh on Saturday, September 28th, 2013. There will be light food and drinks, beautiful artwork, entertainment, and me (I can’t promise i’ll last the whole time, but i’ll try)! If you are on Facebook, you can click here to RSVP to the event. If you are not on facebook, please visit this page and fill out the form at the bottom to let my mommy and daddy know you will be joining us.
We will be accepting donations for the Children’s Home of Pittsburgh at the party. To view their donation wish list, please click the link below.
Visit the Children’s Home of Pittsburgh’s Donation Wish List
I hope you will be able to make it!
Grab your laptop and RSVP!
Since our last stay in the hospital two weeks ago, Judah has been on a new heart medication – Digoxin, and it has done a great job at stabilizing his heart rate, and now that he has mostly kicked an infection, he is as happy and playful as can be. Judah continues to make incredible strides in his development, and he is getting more mobile by the minute! Continue reading
While Judah continues to grow and develop wonderfully, his heart still occasionally has trouble keeping up. For the last few weeks, Judah has continued to have more and more frequent arrhythmia’s and heart issues. For the most part they remain mild, and within an acceptable and “normal” range for his heart, but sometimes his heart rates can get a bit out of control, even with all of the medications he is on. Times like this can lead us to a visit to the Emergency Room, and Sunday, for the first time since we can home on March 21st, a 36 hour re-admission back to the Cardiac Intensive Care Unit at Children’s Hospital (more on this below). However, despite the sometimes frequent craziness in Judah’s heart, his smile and attitude never show any weakness. Continue reading
June has for the most part been a great month for Judah. He has hit a growth spurt the last few weeks, and every day looks more and more like a little boy, and not just a baby. On monday Judah will be 42 weeks old, which is how long mommy was pregnant with him, so he will officially be out longer than he was in. Our little J has gotten to do a lot more travelling this month, with trips downtown to the Arts Festival, going to the Library and Museum, and last weekend he had a major event, and a huge trip to Temple for the first time to officially be welcomed into the community and receive his Jewish name. Continue reading
Hey everyone, Judah here – just wanted to let you know about this awesome party i’m having for my 1st birthday coming up in September. It’s going to be going down on Saturday, September 28th, 2013 at the Children’s Home of Pittsburgh, a wonderful place I spent a while at and really love. Please join us if you can. More details will be coming soon. Continue reading
Judah continues to amaze and impress not only us but everyone who meets him. The last few weeks continue to bring lots of outings and trips into the real world, and Judah has become quite the flirt. Every time he sees someone or something new, he laughs and smiles and charms the pants off of everyone. Continue reading
It’s pretty hard to believe that tomorrow on 5/21 Judah will have been at home for 2 months already. Although we continue to have at least one doctors appointment that brings Judah back to the hospital every week, in those two months he has only had one brief trip to the emergency room for bloodwork, and not a single re-admission to the hospital. At home, he continues to do wonderfully. He is growing quickly, and Continue reading
Welcome back and thanks again for joining us as we continue to watch young Judah grow and thrive! Judah is doing fantastically at home, where he has been now for almost 8 weeks after spending his first 6 months of life in the hospital. At home, Judah can play with all of his toys, hang out on the couch with his monkey, sit in a variety of rocking, bouncing, and swaying chairs, and even Continue reading
We truly didn’t think it was possible, but Judah continues to get cuter everyday. He has also continued to grow and get healthier every day too. Judah has stretched another inch or so, and is now approaching 16.5 lbs. This week his second tooth has even broken through! Continue reading
It seems Spring has finally arrived for us here in Pittsburgh, and with that we have been going for lots of strolls around the block and trips to the park. Judah is closing out his 3rd week at home, and as of today he is 7 months old! Continue reading
Judah has been home for exactly one week now, and he already loves being here. We only had to go back to the Emergency Room one time this week, and we were only there for a few hours so the doctors could run some blood tests (all of which came back normal). There has certainly been a lot to get used to for mommy and daddy, and it may take a couple of weeks to get into a regular schedule again, but Judah certainly seems to prefer being home to being at the hospital, and so do we. Continue reading
193 days. We’ve waited 193 days, but at long last the day has finally come. Today, we were able to bring our son home for the first time. After several good days in a row, this afternoon Judah was discharged from Children’s Hospital. Now that we have our home nursing in place, and most of our medical equipment has been delivered, we were as prepared as possible to finally welcome our son into our home, and with him here, it truly feels like home. Continue reading
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
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
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
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
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
The last week of nice and calm days came to an end this week. For almost 10 days in a row, Judah got to relax at the Children’s Home, play all day with mommy and in the evenings with daddy, and not have any doctors appointments, trips to the hospital or emergency room, or any major events. For so many days the three of us got to just be together and not have any worries. Continue reading
This last week has been very laid back and relaxed, with not too much news to report. After just a few nights in the hospital last week, Judah’s heart rates stabilized and we returned to the Children’s Home. Since returning he has been doing very well, his days are kept busy with visits from speech and physical therapists, and lots of play time, wiggling and dancing, sitting up, getting tummy time, and reading with mommy. Continue reading
Just a few days ago Judah celebrated his 5 month birthday! He got new outfits and a Bumbo chair from his aunt Rachel! Judah is growing up so quickly, he is now up to 24″ long, and weighs over 13 pounds. He is starting to grow out of some of his (our) favorite outfits, but that means we get to buy him new, even cuter outfits. Continue reading
Judah has left the hospital and returned to The Children’s Home, where the nursing staff had missed him tremendously and were amazed how much he had grown in just two weeks. Last week on Thursday, the doctors were able to get Judah in a day early for his Cath appointment. They kept him in the hospital over the weekend, and as of Monday he was sent back to the Children’s Home, for now. Continue reading
In the last week, Judah has had a few more ups and down, but overall he continues to grow, smile, play, and wait for a chance to get into the Cath Lab. Two weeks ago after a cardiology follow up, Judah was re-admitted to Children’s Hospital from the step down facility we had been at, The Children’s Home. He had been having an atrial flutter and some respiratory issues. After some monitoring, medication adjustments, and time, he stabilized a bit and was ready to get in to the Cath Lab. Continue reading
It has been an interesting, and at times crazy week as we begin our preparations for finally bringing Judah home. Continue reading
Judah has been doing very well the last several days. His heart rates have been stable, and he is playful and happy. He continues to put on weight, and is slowly progressing with his speech and physical therapy – to help him feed properly and to watch his development. He is holding his head up on his own much better than before, and he loves playing with his little fingers and kicking his legs. The last week had been pretty calm, Continue reading
A week into the new year, and Judah continues to do very well. Last week was a busy one for all of us, aside from the holiday and celebrating Daddy’s birthday, Judah had a number of appointments and follow ups with his team of doctors. Early in the week he met with his cardiologists, who said he is progressing well, but they see some things that they would like to keep an eye on. Continue reading
We hope this last update of 2012 finds all of you in good company, spirits, and health. 2012 has brought all of us some wonderful times, as well as some not always as wonderful times, but New Year’s Eve is a joyous time of reflection, so we’ll focus on the good for now. 2012 was a year full of joyous celebrations, weddings, births, and gatherings of friends and families. Continue reading
It has been a busy week at the Children’s Home of Pittsburgh. Judah, as well as mommy and daddy, are getting settled in and learning the new routines and procedures. The Children’s Home (TCH) is a step-down facility similar to the Children’s Institute we spent a couple of weeks at back in October, however they focus more on teaching families how to care for their children and the equipment they will need to use. Continue reading
Today was a sad day in the CICU, but for the happiest of reasons. After a long day at the hospital with Judah’s heart rates still acting up a bit, we finally got word that a bed had opened up at the Children’s Home and the doctors cleared Judah for discharge. Continue reading
Almost a week since our last update, and things have been moving along smoothly with little change. Mostly calm days have allowed for plenty of play time, as well as physical therapy, and speech therapy to help us learn to feed again. Doctors and nurses continue to come in and play with Judah and tell him how wonderful he looks. Continue reading
In the last few days and weeks, Judah has shown some great steps developmentally. Yesterday, we celebrated his 3 month birthday, sadly, still in the CICU. But with his 3 month birthday, we can see that he is well on track for where he should be as a baby. Each day he spends more and more time playing, learning, and developing. He is sleeping regularly, and active and playful on a regular schedule too. He gets plenty of time to sing and dance with mommy, and play with his toys with daddy. Continue reading
Judah continues to progress in the CICU, still awaiting transfer to the next facility, The Children’s Home of Pittsburgh. We’ve been given a few dates on when we should expect to go over there, but as the proposed day approaches, Judah has a crazy heart rate, or a medication change, or something to push back our move date a little farther down the calendar. We’re actually ok with this, as we don’t want to rush or move Judah any faster than he is ready to go. Continue reading
Judah has had some great days since his Tracheostomy surgery just over a week ago. Every day he continues to progress, now that he can breath easier. Before the surgery, breathing was difficult for Judah, and he spent a lot of effort, and calories, on just that basic function. Now that he has gone a few days spending a lot less energy on just breathing, the food he takes in can be used to help him heal and grow. He is putting on weight again, this morning weighing in at just over 9lbs. Continue reading
All three of us hope every one of our readers and followers had a wonderful Thanksgiving. We received so many prayers and well wishes, and a great Thanksgiving gift of a happy, awake, and healthier looking by the day baby. Judah had a few great days in a row, which meant Mommy and Daddy got to have some very nice days too. He had a few visitors in town this weekend to wish him a happy thanksgiving, and every day since his Trach and G-Tube surgery on Tuesday has had him looking more comfortable, and being more awake and aware. Continue reading
Judah has been kept very calm and comfortable over the last few days. Tests continue, but he was mainly sedated and resting, waiting for the chance to get in for a couple of operations this week. He continued to get medications to stabilize his heart rate, a breathing tube to assist respiration, and other drugs just to keep him comfortable and without pain.
Today we got to have a much needed good day, after a lot of waiting. It was a busy day for little J, bright and early at 6am he was taken down for an MRI. Continue reading
No rest for the weary in the Intensive Care Unit. After a busy week coming off ECMO and removal of the breathing tube, just one day passed and Judah began having breathing problems again, and quickly had to be placed back on breathing tube support. He has been having a lot of buildup in his chest and lungs, and it is this fluid and mucus that is giving him so many problems breathing. Ideally, a child should never be on a breathing tube, but in some circumstances it becomes necessary. when it is necessary, Continue reading
While a lot of big things have happened in the last few days, on the surface recovery remains slow, but with progress. On Monday, the doctors felt ready to remove Judah from ECMO, the bypass machine that had been acting as his heart and lungs. They began by slowly turning the machine down to see how Judah’s own organs would take over, and finally were able to turn the machine off completely and let him regain full control of his heart. Continue reading
Thank you all for the incredible outpouring of support, thoughts, prayers, and messages. Judah currently remains on ECMO and life supporting machines, but he is stable, and we, as well as the doctors and nurses all agree that he looks a little better everyday.
Since the cardiac arrest on Thursday morning, Judah has had a number of scans, tests, monitoring, and adjustments. His heart rate has stabilized some, and his heart begins taking a little bit more function away from the machines every day. Continue reading
After the heart cath on tuesday, things were looking good. The doctors showed us x-ray images of the restored functionality to Judah’s pulmonary artery and the increased blood flow to his lungs. Everyone was hopeful that this would help Judah not only breath easier, but have more strength to push forward in his recovery. He was resting well and gaining strength, and although he seemed uncomfortable at times, he was easy to console and soothe – until late last night. Continue reading
Being away from Children’s hospital for the last 2 weeks has made us forget just how incredible of a place it is, and how much everyone cares for not just the patients, but the families. Since Friday evening we have been back in the Cardiac Intensive Care Unit at Children’s Hospital, as Judah’s heart rate and oxygen levels had been dipping and jumping inexplicably. The doctors have been monitoring him and adjusting medication levels, but the key thing they wanted to do was bump up an appointment we already had set for later this month to get Judah into the Cath Lab for a Heart Catheterization. Continue reading
After a pretty eventful week, full of appointments, meetings, and advances in his feedings, Judah had another minor hiccup in the road yesterday. First, to fill you in on the week. After a very good appointment with the cardiologists on Monday, and passing his swallow study with flying colors on Tuesday, Wednesday we met with our team of doctors and therapists to discuss our progress, and the road ahead. Continue reading
Life goes on for all of us, living at the Children’s Institute. This weekend brought some colder weather, but we were sure to get Judah out for a couple of walks before the rain came. He loves wearing his fuzzy sweatsuit his gramma bought him, and looks absolutely adorable in it. With the colder weather came the wrath of Sandy, no, not gramma Sandy, she is always nice to everyone, but a not so nice “superstorm” that caused a lot of problems for a lot of people. We wish everyone affected by this hurricane our thoughts and prayers, and hope they can all return to normal life soon with little or no damage and interruption. Continue reading
Judah continues ahead on his road to recovery. In the past couple of days his therapists have tested some new feeding methods, and made some great progress. He is drinking more and more from the bottle directly, 3 meals out of each day his therapy sessions have him drinking the breastmilk/rice cereal mix. In the last few days the therapists have reduced the amount of rice cereal being added, to thin the milk out and let him drink more since he is doing so well with it. He is generating a great rhythm in his sucking and swallowing, and this will be the key to drinking more and more and reducing the amount he has to take through the feeding tube. Continue reading
Yesterday marked Judah’s 6-week birthday, and after a slow start he is continuing to put on weight at just under 8lbs, and he has stretched about an inch or so. Things are certainly different here at the Children’s Institute than they were at the Hospital. It’s a much smaller facility, but thankfully it is much closer to home.
Here, his primary focus is on feeding, and he has been working hard with his therapists every day. Continue reading
A few days at the new facility have brought a lot of changes in Judah’s day to day schedule. The Hospital was a lot of monitoring, watching his vitals and just giving medications, here at the Institute Judah has a rigorous schedule of therapy and eating.
Since coming to the Children’s Institute, Judah has been working with a team of speech, physical, and occupational therapists. The primary focus for J while he is here, is to start eating again from the bottle. From our first day here, the therapist team has been working with him 3 times a day, 6 days a week, to begin his feedings from the bottle and slowly work his volume up. Continue reading
Exactly 4 weeks ago today little Judah had a major surgery to repair his heart. Two weeks ago today we moved from the Cardiac Intensive Care Unit up to the 8th floor recovery area, and today we moved one more time to a new facility, a step down pediatric rehabilitation clinic! Just five weeks and a few days ago our little boy was born, and he has had so many milestones since then. Continue reading
A couple of days without an update has given us plenty of news to update you with! All good news of course, Judah is doing well, continuing his recovery and has even been able to stop another one of his medications. Judah had been on a medicine that required injections twice a day (daddy was giving them to him since he’s the more experienced with injections, being a diabetic), but he no longer needs that medicine and so no more shots! All of the medicines he receives now are oral, and most of them are just preventative meds that hopefully in time he won’t have to take anymore. Continue reading
There is not too much news to report these days, recovery is a marathon, and the checkpoints are becoming fewer and farther between as we continue along at our current pace. We love all of the support you – our faithful followers, have given and continue to give us, but since news is slowing down at this point, updates may come just every couple of days, unless something major happens that everyone should know about. Continue reading
A nice and calm night last night with mommy, both she and baby got to sleep pretty well, even with the anticipation for the swallow test today. Judah has calmed down some, and seems to be doing well now that he has been off a number of his medications for a few days. He will wake up in the middle of the night sometimes just before a feeding, awake and alert he just wants to play and be held. Actually, this is how he is during the day too. He’s a wonderfully calm and quiet baby, and a great sleeper, just like his parents. Continue reading
Today everyone had a celebration, as it is Mommy and Daddy’s 2 year Anniversary, and little Judah Michael’s 1 month birthday. We celebrated it the best way you possibly can in a hospital, with champagne, cake, and good test results. Continue reading
Today was a long day for both Baby J, and mommy. The doctors woke both of them up at 7am to do the procedure he was supposed to have late last week. After not eating for several hours, the doctors took little J down to the operating room to perform a panendoscopy, which is a procedure used to examine the esophagus and stomach. The doctors determined that everything looks very normal in his esophagus, although his throat is still a bit swollen and irritated from all the breathing tubes being put in and taken out, twice. Only time will heal it, but it is normal and expected given everything Judah has been through. Continue reading
Another smooth day in recovery. Today, like every day, brought a steady stream of nurses coming in to see the cutest baby on the floor. Judah’s recovery keeps moving ahead, even though at this point that really just means no steps back.
The doctors decided to give him a little extra fortification in his breastmilk meals, to help him gain a little bit of weight. Although he has not really lost any weight, he has not gained as quickly as he should have because of not eating for so long after the surgery, but he is now getting back on the right track. Continue reading
Hello and welcome back to all of our faithful followers. Baby J had another great day today, medically boring other than a few of his medicines being turned down even further. The doctors are trying to get him off as many medicines as they can before he goes home, but he will still probably be on a few that mommy and daddy will have to continue giving to him for a few more weeks once we are finally sent home. Continue reading
Up on the 8th floor, it is a world of difference from the ICU. Up here, aside from having a door we can close and our own private bathroom, the nurses and doctors are much more laid back. Someone stops in to check on us every 2-3 hours, instead of every 2-3 minutes like in the ICU. Although we loved the attention we were getting in the ICU, it’s an incredible relief to have some privacy and calm. The nurses down here are just as nice as the ones downstairs, and they are also just as in love with Judah as the ones downstairs were. Otherwise, everything is so free and open compared to being in Intensive Care. Continue reading
A huge update for baby Judah today, he was moved out of the CICU and up to the 8th floor! He has been doing so much better over the last few days, that this morning the doctors even took out the PICC line in his arm that he got when he first came here. He now has just one line left, a Broviac line that isn’t hooked up to anything, only being used to take blood when they need it, much like the original PICC line was. Continue reading
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