Yipee the surgery went well!

So many possible complications, the worse being blindness, so much time worrying but thank God that he guided the surgeons hands and Zane did wonderful other than him being hungry that first day!

 He was extubated a day later and because he had so few problems Dr. Rice decided that he would go ahead and schedule him for the reanastomosed next week after he heals and is back up to full bottle feedings he can go home.,

Surgery

Zane was in the OR for 3 1/2 hours it was a long day for him and his mother.  The doctor felt that the surgery went well and she will know more when she checks his eyes in a few days.  He came back to the  neonatal unit intubated and paralyzed ( I hope that they gave him pain medicine as well)  In this photo he looks like a big fly with both of his eye patches. Please pray that all went well and that we will receive good news on his next eye check.  It is our hope that he can go home in the next two weeks.

Minor set backs

Zane has been doing wonderfully, eating all his feeds when his nurses and parents feed him. Samantha has become proficient in changing out his ostomy bag and giving him a bath.   He has steadily gained weight and he is now  2.060 (4lb 5 oz). 
He did develop some thrush on his tongue and he was given nystatin but this did not seem to help him and his feeding was dropping off (as I can only imagine that his tongue hurt him) so a 3 day course of gentian violet which works quickly.  Unfortunately no one told Samantha to expect to see a purple mouth and she "freaked" out when she saw his lips were blue, she of course thought he was cyanotic!

After the first day we could see a change in him and he started to eat a lot better.   Dr. Toth  who specialized in vitreoretinal diseases felt that Zane needed to have his retina operated on to save his vision. His ROP had advanced to stage IV.  He is to have surgery on Friday on both of his eyes. He will be intubated again and his feeds will be held until he is awake enough to start eating. So keep your fingers crossed for a good outcome for Zane

Just some photo's from today 3-3

Zane continues to amazes us, his personality shines and he shows such a love for life.  Everything he has gone through I am amazed at how happy and  settled he is, I thank God daily for his team as they are the ones who have made the difference in his outcome.,

38 weeks 3lbs 15 ounces

So many things have happen over the last three weeks, Zane was moved down to the transitional nursery, this in itself is a tremendous move as this is the last step before he goes home.  This transition though it not without a lot of anxiety causing moments. The set up is different and the nurses have three patients as opposed to just two, this makes for time management a crucial part of the nursing care.  We also have to get use to a new set of nurse practitioners and attending and they need to get use to us.

Over the last three weeks, Zane has had laser surgery for his eyes a second time and he is being looked at again to see if he needs a third round to prevent further damage to his retina of his eyes.  He has also been weaned on his lasix but still needs a small dose to keep fluid out of his lungs.  If they would leave his lasix dose along he would stay off his oxygen but as soon as he is weaned on goes the nasal cannula.  This is one of the items we will discuss at the next family conference.

He now takes most of his bottles except when his feeding time has been missed and his "alert" period is already done.  He certainly does have a little personality and will laugh and interact with you and he still has his temper!

36 weeks and growing 2lbs 11 oz

 

Zane continues to gain weight little by little he is getting bigger.  He has tolerated his mixture of SSC mixed with breast milk, no residual no aspirates and no emesis.  Pt/Ot saw his this week and gave the "ok" to start po feeding,  They were able to get him to take 9=10 ml 1 x a shift, I went to visit with Zane yesterday and feed him his whole feeding 24ml! He finished in 13 minutes with no bradys or desaturations. Zane needs to eat when he is alert and awake and rooting, he needs some chin support and he will pace himself. One of the problems in a hospital is that feedings, medications, procedures are done on the hospitals schedule no necessarily the best schedule for the patients.  It is my goal to feed Zane daily and if I can't feed him I have a few friends who will be there for him so that he can get this skill down.   His care nurse last night fed him 2x and he took the bottle without any problems. It is my hope that he comes home sometime in March around his due date. 

35 weeks and growing

Zane finally joined the kilo club,, that means he is now over  2lbs 2 oz and has maintained that weight for the last 3 days.  His had his eye exam and they felt that the laser 'worked" and that his sight has been saved.  His repeat head ultrasound showed that his bleed is resolving and he has not had any additional bleeds.  Zane also has his first real bottle he only took 5 ml but he was able to suck and swallow without bradying (dropping his  heart rate) or have desaturations.  This is one of those mile stones that you look forward to, hopefully this week he will start to take one bottle per shift and work his way up on his feeds.

He also has a very distinct personality, he responds to his name and although he shows some hypertonia he is able to calm himself and focus.  Zane has made tremendous gains over the last few weeks, perhaps he will come home on his due date...