Updates For Jacob

Update from Kieva 1/10/ 2026 

I wanted to update you on baby Jacob. We are still in the PCICU. He has been taken off of the Bipap machine and put onto a CPAP machine. The infection he got weeks ago that was in his lungs has done some damage that's going to take a long time to heal from. He also fought sepsis a couple weeks ago from the same infection that got into his blood. He is doing better now though. Yesterday we had a big meeting for him and we all agreed that despite our best efforts Jacob is not going to recover his respiratory function fully in the immediate future. In the interest of getting him home and out of a hospital bed with tubes strapped to his face 24/7 we have decided it's time to get him a tracheostomy. This is a good thing and a bad thing. 

My husband and I both have to do extensive training on Trach care.

He's changing so much! I can't wait to see everything off of his face and him smiling.  Kieva

From Grandma Donna, I would like to add that this is a difficult thing to learn Trach care and especially when even being in a hospital makes some people uneasy much less doing a procedure on your child.  Please keep Kieva and her husband in your prayers to help them to learn this special care for little Jacob. 

You can find some pictures of Baby Jacob and the first article  in the forum  called A special Thanksgiving wish. 

Thank you, Donna for posting this. I just saw your post today after Sharon  told me she read the update.  I appreciate you updating people. I was just telling my husband that Jacobs first birthday is going to be a big one because his first year of life is likely going to be the roughest for him (and us). 

I would like to post more pictures but it is hard to find pictures currently that I can post that won't be disturbing to some because a lot of them are difficult to look at, especially now while he's in the middle of his struggle. Later, they likely won't be as hard to look at because they will be a testament to what he's overcome. It's pretty widely known among the Down Syndrome community that the first year or so of life is usually the roughest (I'm glad to know he won't remember it). I do hope that in a few weeks there will be more pictures that aren't hard to look at as long as a trach doesn't bother people. Having the trach will make it so that Jacob can now focus on learning to play and simply be a baby. 

While I was home sick with a cold last week, his doctor called me very excited because Jacob smiled while occupational and physical therapy were working with him! The nurses , doctors, and therapists have all grown quite fond of "Mr. Jacob". Jacob likes working with the occupation and physical therapists. They do fun things with him. I am grateful for them also because they teach me how to safely play and work with him while he recovers and they teach me ways to help strengthen his muscles.

 Transferring to another hospital is going to be hard because we have become quite fond of our nurses, doctors, and therapist who know Jacob so very well. I don't think I've met one person here that I don't like. Take, for instance, Dr. Cardarelli who is a very skilled pediatric cardiologist and performed Jacobs heart surgery....he is about as humble a man as I've ever met yet the thought that he has the strength of mind and emotion enough to perform these life saving surgeries on BABIES is mind boggling. The nurse who made Jacob his Thanksgiving art project and unknowingly gave us his first footprint since we were not afforded that luxury the night he was born. Or Mr Colby (one of his nurses) who saw a stuffed animal that reminded him of Jacob, acquired it, and quietly tucked it in next to Jacob one day while I was on another home visit. I wonder in the mundane routines of their days if they truly understand how much they change and touch people's lives....

Our Sharon is doing something very 1940ish in that this Saturday she's coming to visit Jacob and I (again). I am grateful for this blog introducing us! She and I hope to try our hands at crocheting as we visit bedside. Thank you to all those who have found an interest in Jacobs journey and have kept us in your thoughts and prayers. 

New Message from Kieva,

Jacob had his surgery today. I have a sinus infection so I could not be with him in case I was contagious. That was very upsetting but I did get to zoom meet with the doc and nurse after he came out of the surgery. He did well. I got lots of screen shots of him and he looks so good. He looks peaceful and almost looked like he was going to smile! It makes me feel so much better to see his face bare and him breathing comfortably. He struggled with that mask. It wouldn't seal right and it would blow air all over his face. They had to put padding all under the masks and straps to avoid pressure sores. It had to be re-adjusted multiple times a day...all that was so much for that little man to bare! But now his face is free. 

Grandma Donna Wrote, I am so happy Kieva that this surgery has now been done and Jacob has his beautiful face free from that irritating mask.  This is going in the right direction now to getting home and having all of your family together.  We will keep Jacob, you and your family in our prayers and for your sinus infection to completely heal so you can be back with Jacob.  

Much love, Grandma Donna

Oh, I only just now saw this.  Must have somehow missed it when it was initially sent.   I have thought about you all and wondered how things were going.  It's so good to hear that Jacob's surgery is over and that soon you will be going to the new hospital where you and your husband can learn the skills to take care of him when he gets home.  Tiny steps but leading in the right direction.

Take care.