Getting to hold you....

It had been such a long and hard journey through ecmo, and then we had more accessories to work on loosing.

But before he could loose anything,  a new feeding tube had to be placed. For surgery,  they had to remove the first feeding tube that Jace got, and for the whole time he was on a nutrition that was made in a lab and sent straight to his veins.  It was essentially all the vitamins and minerals and calories he would need. It is weird stuff,  because it makes babies have meconium poop again! And when he wasn't paralyzed anymore,  it didn't make him feel less hungry,  so he cried all of the time,  even though he couldn't make any noise. The ventilator goes past the vocal chords, preventing vibration. His silent cry made all of his family and friends cry also.

They had put Jace on some heavy sedation and paralyzed him to stitch up his chest. So while he was still pretty paralyzed,  they placed the feeding tube.  It was so much smoother this time around, since he was paralyzed he couldn't move.  But if you thought the silent cry was sad, this one takes the cake.  As they placed the tube it still took a few tries to get it to work,  and I was greatful he was paralyzed until I started seeing tears. There were tons of tears rolling down his sweet face. His sedation had worn off, and even though he looked asleep,  his mind was awake and he could feel all the pain of having the tube run into his throat. I cried and although I couldn't hold him,  I tried to wrap my arms around him and tell him it was ok. Fortunately, once the paralytic wore off, he didn't have to silently cry for much,  because they started his feeds through the tube, and he seemed to feel much better.  He wasn't constantly hungry anymore.

Then he got to loose the ventilator!  This was the machine that pumped his lungs with air, and had a tube that went down into his throat. They told me that they would have to wean him off of the ventilator,  so they would turn down the number of breaths per minute that the machine gave him,  and also turned down the percentage of oxygen he was getting. He could take his own breaths over the machine then. So, as patiently as I could,  I waited.

And waited.

And waited.

Finally,  one day they said they were going to start cpap trials, where they turn off the machine for an hour,  and let him breath,  then turn it back on for 3 hours and let the machine do the work.  So we did that for 2 whole days, and during this time, they also started giving him breathing treatments where they puffed air very quickly into his lungs. It looks so horrible,  the babies bellies bounce and I was so worried it would be too intense for him, but every time they did a treatment it put him right to sleep!  The reason for this treatment was that Jace's capillaries started to close because they were overly relying on the ventilator.  He was also fighting off an ecoli infection in his lungs,  so there were some secretions they had to help him get out. His X rays started looking much better, his secretions were more clear and fewer.  So then Saturday they decided to up his cpap trials to 2 hours on 2 hours off.

On Sunday morning he was extubated, taken off the ventilator!  He struggled quite a bit,  the day was so stressful.  He was breathing far too quickly,  so they thought he would have to go back on from that. He was breathing by using his stomach muscles,  so he looked like he was straining to breath. His oxygen levels didn't look too good for a while,  then his lactic acid levels shot up... every little thing was one more reason they thought they would have to reintubate him, putting him back on the ventilator, but right at the last minute he would improve just enough to avoid it! They told me to keep him quiet,  limit visitors and all. Well, my parents came, and we also had my husbands family in town,  and they were just coming to say goodbye... so we had 7 people, plus my 2 year old daughter! It was a little nuts, trying to tell everyone we had to keep really quiet, and hoping that he wouldn't have to go back on the vent.

It wasn't until hours after extubation that I finally settled down and felt like he was going to make it. But he did!

His sweet little voice,  it was so weak after all the time on the vent, but it slowly came back.  It was just incredible to hear his weak little "wah". The next two days were quiet victories.  He was able to start pacifier tasting, which was basically using 1 ml of breast milk at a time, and putting little droplets on his pacifier as he sucked. As his  voice got stronger,  it was an indication that he would be able to swallow without choking.  So we were able to try a bottle,  very slowly.  He started by taking 3 ml! For those of you who are like me and have a hard time with the metrics... there are 30 ml in an ounce. So, eating competitions... not quite yet! Meanwhile, the nurses haf been working on weaning his meds, so he could take them orally and not have them on a continuous drip.

This is just an example of the glowing green boxes Jace needed to continuously infuse drugs into his system.  The large pole here is after lots of meds were weaned off, he had times in this journey where he filled two poles completely and had some hanging off of a pole on his bed. The tubes can also hold combinations of drugs,  so he might have 15 boxes for 20 meds.  So needless to say after 2 weeks on ecmo,  weaning off of his meds, some of them highly addictive, was a long labor of love.  Tweaking and watching vitals, tweaking and watching vitals.  So by the time his tube came out,  there were only about 3 meds still on low doses on the pump, everything else was intermittent and some even oral. Then on the 15th,  there was only one med on a low dose on the pump.  They stopped that med and tried him on the oral medicine that replaced the pump med. I had to wait hours before they decided to take the arterial line out!  Once we waited an hour to make sure that he was well clotted, I would be able to hold him. It was one of those hours that dragged on for eternity!  But then he was finally in my arms again, after a month of long waiting!