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...

2lbs...and holding

We held our breath this week as it has been a busy week for Zane, not only did he have laser surgery, have his mixture of feeds change, and yet another blood transfusion but he has finally hit that magic number 2lbs. 
Tuesday Zane has his eyes checked and he was not at stage 3 but right on the verge, the decision was made to recheck his eyes on Wednesday and to schedule him for eye surgery on Thursday.  The surgery lasted about 1 1/2 hours and he tolerated  the procedure well. They did not intubate him but instead gave him some verseed.  Zane being a wimpy white ball kept forgetting how to breathe but his wonderful nurse would give him a nudge on his feet and remind him that breathing was not optional. The surgery has a 75% success rate and it is hoped that he will retain his vision, he will be rechecked on Tuesday.

 

Zane had to be NPO 2x this week and he certainly does not like missing a meal and lets us know about it, he has attitude! His eyes are not as swollen and he really does try to concentrate on your face when you talk to him, the next goal for him is to make the 1 kilo mark...Perhaps Monday night!

34 weeks and 874 grams aka Benjamin Button

Zane is now receiving 75% Similac Special Care formula 24 cal and 25% mothers' breast milk with beneprotein every 4 hours. He has tolerated this mix well with only 15-20% output from his ostomy. He has continued to show weight gain and we are hoping that he has finally turned the corner and he will continue to grow on a daily basis.

Zane did have several set backs last week, he has two nurses who were not part of his primary team because they were not aware of his "normal' behavior some miscommunication occurred.  His lasix and hydro-cortisone were weaned on the same day and he has not tolerated this wean before. His urine out put decrease as did his blood pressure, dopamine was started and the NNP thought about doing a septic rule work up, I spent many hours calling back forth to the hospital, talking with the nurse and the NNP to let them know that this was his normal behavior and he needed his hydrocortisone increased and would be ok.  I have a lot more grey hairs after that night.

  This is one reason I advocate for primary care nursing.  Your primary nurse knows the babies history and can present valuable information to a NNP team, this information can help to prevent unwarranted septic work up (which require arterial sticks) or ensure that a septic work up is done because the infant is just not right. Your primary nurses in my opinion is the pseudo "parents" they are not only safely taking care of the baby but they are the advocate for the parents when they are not at the bedside.Our primary nurses allow the parents and the grandparent  peace of mind as we know that someone is taking care of their baby who cares for them as if it is their own.  This reassurance is what allows us to continue working and trying to maintain some stability in our life.

33 weeks

Zane is making small gains with his, but tonight he will be NPO (nothing by mouth) as he needs blood again and this will set him back 1 full day. I have asked that they put in a picc and allow him to have TPN along with his feeds so we can boost his nutritional status, this is usually not done in our unit but with his little weight gain perhaps they will entertain the idea. (NOT)

On Sunday we had a communication glitch again the NNP who was on duty was going to switch Zane's food to 50/50 mixture, although our plan was to do this on Tuesday so that he had 3 days to get use to the beneprotein being added to his feeds.  What annoyed me the most was that no one called to tell me what they were doing, once again THANK GOD for the primary nurse who keeps us informed.  I was able to talk with the NNP and they withdrew that plan and held steady with the original plan we had agreed upon.