Thursday 3/28 – Judah’s First Week Home!

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

Thursday 3/21 – The Eagle has Landed

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

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