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
Today was Judah’s 3 week birthday. We celebrated by removing one of his IVs, and continuing to lower his medications. He has been able to discontinue almost all of his medicines, except for about 3, down from his high point of 12. Continue reading