Week Two: Wow!

Wow!  What a difference a few days can make in the life of a NICU baby!  Matthew is nearly unrecognizable compared to just a few days ago.  He is making amazing progress and we are getting more and more excited to bring him home.

(This picture was taken Wednesday night after having his chest tubes removed.  Almost all of these wires are now gone!)

Last weeks goals included getting rid of his chest tubes, getting his food via milk to his tummy, and getting off the ventilator. He had all of his chest tubes out by Wednesday: check!  He got bumped up to "full feeds" (meaning no nutritional supplements) on Thursday: check!  Getting off the ventilator, however, was a bit more of a challenge.  He had been doing SO well, so they decided to extubate him on Thursday.  Well, things did not go as planned and it turned very scary very fast for our sweet little baby.  His blood oxygen started plummeting and a whole team of people rushed in.  It was one of the scariest and most helpless moments of my life.  Luckily, there are always amazing doctors around and they got his breathing tube put back in and got him stable.  We had been warned that things in the NICU were often two steps forward and one step back, and that was our reality check of just how fragile our little guy is.  They figured out what went wrong and started him on some steroids and told us they would try again on Monday.  We left the hospital feeling discouraged, it felt like a huge setback in his progress.

After he got all his chest tubes out, J.P. finally got to hold Matthew on Wednesday night!  It made me SO happy to see this precious moment.  Matthew was awake and happy and just staring his big dark eyes up at his Daddy.  I had made it all day Wednesday without crying, but I have to admit I shed a tear or two of happiness seeing them together.  Matthew snuggled right into J.P.'s arms and fell fast asleep.  It was wonderful!!

The big boys all got in town on Friday evening and were so excited to see Matthew!  It is crazy and hectic when they are all in town, but it makes my heart so happy to be all together, even if it is only for a few minutes at a time.

On Saturday morning we were greeted at the hospital by an unexpected surprise: they decided to try extubating Matthew again.  J.P. and I were both so nervous after the last time went so horribly wrong, but hopeful that it would go well.  Everything went very smoothly, and they even hooked him up to a lesser respiratory support than they were planning on the first time.  Yay!  No more breathing tube!  And now we can hold him whenever we want, which is the most amazing feeling in the world.  He is still on oxygen via a nasal canula, but we can see his face better and all of his cute little expressions that we couldn't see before.  His cry is still hoarse from the breathing tube, but it is so wonderful to hear every little noise he makes.

After waiting patiently for twelve days, all of the big boys got to hold Matthew on Sunday!  They were each so sweet with him and showed their big brother expertise by holding him just right and being so gentle.  Even A.J. gave him a "hug" and was so loving and gentle.  It was one of those moments where I thought my heart may explode from love and happiness.  Matthew is so lucky to have a whole crew of big brothers to love and protect him.

After so many changes in the past week, I can't wait to see what is in store for the week ahead.  Goals for this week are to work towards getting all of his milk orally and to wean him from oxygen.  He started bottles on Sunday, and is doing ok with them.  He has a feeding tube in his nose currently to help get the full amount.  Babies with Down syndrome often have a hard time eating, and being on a ventilator for the first eleven days of his life also causes a delay.  Weaning him from oxygen will be a slow and steady process.  Matthew is in charge of how quickly things go from here.

A couple of other big changes for Matthew include wearing clothes and sleeping in a crib!  What a big boy!!

(This was immediately following his successful extubation.  He has since had his "unicorn horn" removed from his scalp)