Happy Re-Birth Day!

After 6 short days, baby Jacob went from this:

 To THIS:

 When we showed up at the hospital on Monday, we had NO idea how quickly Jacob's recovery would be.  Yes, it was one of the hardest things I have EVER had to do and I wouldn't wish it on my worst enemy.  But it was also the BEST thing that could have happened to Jacob.

After several days in the hospital recovering, Saturday came around along with a visit from one of the cardiologists.  He took a look at Jacobs numbers, chest X-rays, statistics, nurses charts, and told me that he was putting us on the 'launching pad' for discharge on Sunday.

And just like that Jacob was going home.  A week sooner than we had expected, and 10 times healthier than anticipated.  Once the medication issues were resolved, the changes were immediate and remarkable. 

Jacob started drinking from a bottle without ANY reflux or spit up.  In fact, he's a great burper!  It was a matter of gradually increasing his feeds because we needed to stretch his stomach.  He hadn't been eating anything in weeks!  They weened him from almost all of his medications.  He's down to Lasiks (which they figure he will be removed from in 1-2 weeks) and Zantac (which he may or may not continue to be on depending on the reflux - I'm leaning towards NOT). And the boy has ENERGY!  His face has become pink, his eyes are shiny, he's awake more than 1/2 the day kicking, grabbing, laughing, smiling, and discovering the world he had been too tired to notice before. 

  Before the surgery, the extent of his movement was using one hand to touch the face of the person holding him and just looking into their eyes:

Now, he is completely interactive and engaged in whomever he is with.



Now, he acts like a normal baby - he cries when he's bored, wants to be held, is tired, or hurt.  Whereas before, he only cried when absolutely necessary because it wore him out too much. 

He's almost rolling over, his legs are already considerably stronger, and his stamina is unbelievable. 

Simply put, Jacob has been re-born.  He is a brand new baby, already packing on the ounces, and enjoying every possible minute.  It's fun to see his progress, and it will be even more fun to report on it.  For once, I see many many MANY happy blogs in my future!

Welcome Home, Jacob! We're so happy you are with us!

Ebs and Flows

***NOTE:  OK, it's been a few days and a very eventful week, so you're gonna have to deal with several posts in one day.  Sorry!!***


It took me a while to get around to writing this blog.  I'm not quite sure why. I guess maybe because we had seen such dramatically wonderful progress, and then in a matter of hours, Jacob digressed almost as quickly.  Intellectually I know that this is not a big issue.  It's bound to happen, I should just go with the flow, and appreciate the small miracles in my life thus far.  Emotionally, however, it was a bit devastating for both KC and I. 

When I left the hospital on Wednesday night, Jacob was perfect. He was alert, happy, calm, and relatively pain free.  It was more than I could have hoped for.  When KC showed up at the hospital on Thursday morning, he was the exact opposite.  When  you looked at him you could immediately see that something was wrong.  His eyes were terribly crossed, he wasn't responding to sounds, or his voice, his arms were stiff, and he was doing some funny 'tongue' thing.  If you didn't know any better, he would have looked more like a traumatic brain injury victim than a child with Down's syndrome.  KC spent the day listing to Jacob crying in pain and discomfort, and trying to convince the nurse of the day that: "No, this is NOT normal for our child.  Even IF he has Down's Syndrome"   We hear that a lot from the nurses.  "Well, that is completely normal for a child with Down's Syndrome...." and then they just dismiss whatever concerns we might have. Yesterday was no different.  He fought and fought all day long to get someone to listen to him but to no avail.  Then, Jacob lost his IV, which meant that KC had to listen to Jacob cry for about 45 minutes as they tried unsuccessfully to put a new one in.  Finally, when he was about ready to go in and pummel one of the nurses (luckily one of the AWESOME nurses from previous visits was able to talk him down and have him go for a walk where he didn't have to hear the crying) they got the IV in.  However, it didn't fix the crying, or the newly re-acquired reflux that Jacob was experiencing.

Needless to say, when I showed up for my shift in the evening, poor KC was absolutely frazzled.  There's nothing harder that seeing your child in pain and misery and being able to do nothing about it.

I walked in the room and immediately saw Jacobs issues without KC even vocalizing his concerns.  Luckily, we had Maggie (another amazing nurse from previous visits) who was filling in for the day nurse while she was on her break.  I began asking questions, describing everything that had changed since last night, and she immediately keyed into the fact that just before I had left for the evening, they had begun giving Jacob a new medication, Raglan.  Maggie explained that she had seen other patients on Raglan exhibit the same symptoms from the drug.  She made a few phone calls, talked to a couple of doctors and got Jacob off both the Raglan AND his Lasiks!  Within a matter of hours, Jacobs eyes were no longer crossed, he was reacting to my voice, his arms were no longer stiff, and he was looking at me in the face. He still wasn't feeding (they had to put an NG tube - goes to the stomach instead of the intestine - to give him his nutrients) but that was to be expected.  We were already expecting him to go home with an ND or NG tube. He was still a little fussy, but it appeared to be more out of tiredness than pain. 

A few hours into my visit I was able to put him on my chest and let him sleep on his belly.  Soon after he woke up though, the evening nurse came in, showed me his heartbeat on paper before and after his nap and showed me a HUGE difference in the heartbeats. No more belly sleeping!!  It was causing way too much distress.

Regardless, he was doing better, and that's what mattered.  Crisis averted.  By the end of my 'shift' he was again sleeping soundly, and acting perfectly normally. The nurse was going to keep an eye on his heart beat, but otherwise I was told he was well on his way to a quick and complete recovery. 

Good As New

Today was an amazingly productive day at the hospital for Jacob.  KC headed over to the hospital this morning and took the 'day shift' which is filled with doctors' visits, tests, etc.  While there, they took out Jacob's chest tubes, which were used to drain fluid and blood from his heart during the healing process.  We had both thought that the tubes in his tiny chest would be about 6 inches long, but KC said that they were closer to 15 inches long.  Holy smokes! Where did they put them? Did they thread them up to his brain, down to his heart and into his intestines while they were at it?!?  It was a painful process for Jacob, but it made an incredible difference in his recovery efforts, and also enabled KC to begin holding him rather than standing helplessly by his bed.

They also removed Jacob's central line, which is basically tapped into a major artery, his internal jugular line - which is a pick line, removed all but 1 IV drug, and all but 1 bag of fluids.  When I walked in, they were only monitoring 3 vitals, and KC was just getting ready to feed Jacob by mouth (Yes! by mouth!!!!) another bottle.  Apparently, his reflux and  most of his gagging is completely gone!!! 

Today was a day full of small (and not-so-small) miracles.  KC had an incredibly emotionally draining day as he had to endure the cries and looks of pain by Jacob as they removed the lines, drugs, chords, and tubes.  But he also got to hold his son, and see him progress by leaps and bounds in a matter of a few short hours.  I, on the other hand, just waltzed right in, they immediately placed my little baby into my arms and I got to snuggle with him as he drank (and didn't gag a single time!!) his bottle! 

I held him as he ate, slept, and ate again.  I talked with the nurses and discovered that he is already off of almost everything, and that his recovery is considered remarkable. I looked down at my little boy and noticed that his coloring was normal (not balmy and pale), and that he looked like the strong little boy I remembered before his heart failure and subsequent medicines were prescribed to him.  After 4 hours of holding his sleeping body in my arms, I had to reluctantly admit that Jacob didn't need me tonight for comfort and care like I anticipated.  The events of today had exhausted him physically as much as it has drained KC emotionally.  It was obvious that Jacob had every intention of sleeping the whole night through! So, I placed him in the arms of our ever-vigilant nurse and said my good-byes knowing that my sweet child would be in good hands as he slept.

The more I thought about it, the more it became very evident that Jacob is now beginning down a path where he will begin growing by leaps and bounds, he will have the energy to strengthen his muscles and progress physically like any normal child, and that his energy levels will be equal to that of any other child.  In essence, Jacob has a new lease on life and I have a feeling that he will be living this new life to the fullest!

I am forever grateful to everyone who has said prayer after prayer for us.  For all of the words of encouragement and support we have heard, the acts of service and kindness we've received and the well-wishes of those with whom we come in contact.  What could have been an emotionally devastating experience has in all actuality been a truly humbling and uplifting experience that has forever changed our family and our lives for the good.  I guess all the wonderful moments we have with Jacob from here on out are just icing on the cake!