1 Year Old today

It is hard to believe that it has been a year, Zane has grown and is starting to hit most milestones, he still has oral aversions and this makes it difficult with him learning how to eat. But he is now rolling over and starting to hold us upper body up more on the road to crawling. He can sit up right for a few seconds but still has some deficits on his right side.  Grandma purchased a horse for Zane to learn how to "ride" or at least how to sit up and use his stomach muscles.  Zane is now 13lbs and has started to use his voice to let us know of his displeasure and happiness. He has a smile that lights the world and loves his cousin, who makes him laugh just by saying hello.

The big day has arrived... IT IS TIME TO GO HOME 4/16

After many days, weeks and months of waiting and watching  Zane he will be discharge home today, to most people this Friday is no different than any other but we know differently, our lives were change the day this baby was born and no day will ever be the same,

Zane has been able to ward off most of the bugs in the hospital, survive several major operations  but thanks to the abilities of his nurses he will leave this hospital with a few minor problems,

5lb 7 ounces

Zane has taken off with his weight gain and is actually chubby, he is taking 2 to 2 1/2 ounces of formula, all his test have been completed, scans are done, labs have been rechecked and don't tell Zane but he is expected to come home Friday

April fools day

That is the day they choose to take Zane back to surgery, he was reanastomosed and had his hernia repaired.  He came back to the unit intubated and sedated, which based upon his girth was a good plan. He was abdominal was very  distended from the surgery and he was not allowed to eat for several days, until the girth decreased.

Friday he was started out slowly and he soon let everyone know that he was not happy about having his food decreased, by Sunday he was up to full volume and was tolerating all his feeds, the doctors then spoke to Sam and told her that they are hoping for him to leave the hospital this week...

Everyone is excited and we can't wait for the day for him to come home, as soon as he arrives home I will put up the new photo's

it has been a long 147 days....

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...

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.

Communication 101

Today was the family conference to discuss Zane's nutritional needs and how the team could best optimize his nutrition. I had a lot of articles along with the breakdown of preterm formulas, and the nutritionist on the NNP team also had a lot of information.  I was happy to hear/see that we both had the same information!
We all agreed that Zane needs to increase his calories and protein so that he can grow it was just a matter of how he was going to get these calories.  In this unit HMF (human milk fortifier) is the main staple used to increase calories.   Samantha and I preferred that they used preterm formula and mix it with the breast milk instead of the HMF.  We felt that by mixing the HMF  their was no consistency with the amount the infant received in his feeds, where as formula was consistent.  So we agreed to mix 50% similac special care formula 24 calorie with breast milk along with 1 package of beneprotein. The beneprotein has been added to increase the protein from 2.1 to 2.3, if Zane tolerates this mixture we can increase his beneprotein and/or mix formula 75:25 and transition Zane to full formula within a few weeks. Hopefully we will see a consistent weight gain over the next few nights.

High K+

So what does the K+ stand for--- potassium and a high or low value outside of the normal value is a BAD thing.  Zane had his diuretic decreased and with the decrease in his diuretic his urine output also fell off to 1.2 ml/kg/, for a infant his size we like to see greater than 2.  Although his urine output had decreased he was still receiving his potassium supplements in his feeds of 3meq/kg and this combination (low urine output high supplements) caused him to have a high potassium level of 7.4
Zane's potassium was stopped and he showed no cardiac changes but 3 arterial sticks were done during the night shift to monitor his potassium level. 

Zane was also put on a renal dose of dopamine  to increase his urine output and when that did not work he was given a normal saline bolus which worked well!  By morning his urine output was up to 6ml/kg.  His nurse remember to give him toot sweet before his arterial stick and you can see the "ahhh that was good" on his face he sure does like his sugar!

Discussions around formula vs breast milk

The roller coaster ride was extremely bumpy this week, Zane has done very well on CPAP and he went down on his pressure to 5 from 6.  The attending and I agreed to mix 75:25 of mother breast milk with similac special care 24 calorie formula.  This gives Zane 24 calories and added nutrients for growth.  Sam's milk tested at 24 calories. The next 'discussion" will be when to increase to a 50/50 mix.  The attending is pushing to add more to Sam's milk and after the discussion with the NNP on Wednesday Samantha stopped pumping, so much for family centered care.  As she puts it, 'if my milk is so deficient and needs all these additives why do you keep pushing for me to pump." Especially since a few weeks ago one of the attending spewed information about how good breast milk is and if Sam's supply diminished we could always use donated breast milk.  Which Samantha refused to do, by the time they pasteurize the milk the benefit is negligible, and formulas have been designed to meet the needs of the preemie so why not stick with something that the nutritional content is known. Unfortunately their is no consistency with information that is being provided and fellows/attending/NNP change information based upon what the agenda is for that day.

 For me I would like to see Zane tolerate this mixture for 2-3 days before going to a 50-50 mix.  The problem with going to a 50-50 mix in a short time is the infant can show feeding intolerance and the last thing we want to do is make him NPO (nothing by mouth) as this will let him get even further behind the growth curve. They also added benoprotein to his feeds to increase his protein intake. It would be helpful if they had him off his diuretics as this leechs out his minerals.  They (hospital) seem to be very worried about increasing his protein intake because of lack of growth over the last 8 weeks but they need to remember they (hospital) were in control of his growth and if he lacks it is because they did not monitor and achieve optimal nutritional status with his TPN and Lipids. It is unreasonable to think that 6 days of full feeds is going to replace 7 weeks of poor growth.

I was counting up the labs Zane has had by  heel stick, and as of Tues he has  105 heel sticks and 8 arterial sticks. No wonder the baby does not like when you touch his feet
We were also informed that he has pseudomonas in his eyes.  No one really know how this has happen some suggestions were from the cpap as it provides a moist environment, yet no one else seems to have had this problem.  Zane also had an eye exam done on Tuesday and the doctor did not not mention that his eye was infected, so I have to wonder what are they looking at when they do the exam?

Daddy holds for the 1st time

Zane has maintained his saturation's on CPAP, his feeds have also been increased and TPN/IL have been stopped.  Now it is a matter of just feeding and growing for the next few weeks.  This is not to say that it is clear sailing but hopefully only minor bumps along the road.  Because he has been so stable dad decided he would hold Zane and he did a great job.

One of the problems that Zane will run into right now is growing, breast milk only has @ 20 calories, Samantha's milk will be tested to see if the calorie content is higher than 20,  next week. Otherwise the MD/NNP's will push to add additives to his milk. One of the problems with additives is that is changes the osmolarity of the breast milk and this can lead to gut problems, especially since he already had a perforation of his gut. We have agreed that beneprotein can be added as this will help his brain grow. I will continue to watch how he does each day and how he tolerates his feedings and the added calories can be revisited next week.

32 weeks

A new attending is now on service this has some benefits as well as draw backs.  A new attending often brings a new set of ideas as well as a new plan of care.  One of the draw backs is that they are unfamiliar with the infant's prior behavior and his likes and dislikes. As an example Zane likes a crit around 32 and a normalize chloride level.   To over come that problem Zane has a great set of parents who can give accurate information and a grandmother who is familiar with Zane's "medical"  course over the last eight weeks as well as a great set of primary nurses who will speak up for Zane when we are not around. The attending and I spoke about what the short term goals for Zane, as well as the plan for the next few weeks.  One of my concerns was that he was still intubated and that this was causing him additional damage to his lungs. A plan was made to  wean the vent daily and to extubate before Zane needed to be transfused again.  Apparently Zane was listening to the conversation as he was very cooperative and he was extubated to CPAP on Tueseday.

 

Zane is not happy with CPAP (most people would not enjoy air being forcefully blown up your nose ) but we hope that by next week he will be on a nasal cannula which is gentler to the nose.  CPAP is beneficial for Zane right now as it helps to keep his lungs open.  He is also on 100ml/kg/d of mother breast milk along with TPN (paternal) nutrition to help boost his calories.  His current weight is .711 grams, the goal is to gain 20-30 grams a day.
The NNP's have also remarked that Zane seems to have a attitude problem, if he doesn't like how you do an assessment, or the mask on his face, he lets you know, that must be the Yankee in him!

Jan 3rd 2010

Zane is still intubated but he has been doing a lot better since receiving his blood transfusion.  His lab work this am showed that his WBC has almost doubled and he has some increased bands.  He remains on vancomycin and gentamycin his anti-fungal was stopped two days ago.  A urine specimen was obtained and labs will be done again in the morning.  It seems as much blood as Zane is given--- just as much is taken out for lab work.

His sodium and chloride levels are still low.  I had discussed the possibility of increasing his potassium in his fluids so that his chloride level would go up, but no changes were made to his fluids today.  One thing I have noticed with Zane is that when his chloride level is "normalized" his bumex ( 50x the potency of lasix ) works better.  It drives me crazy when a plan has been discussed and no action has been taken, I understand that things change on a daily basis but then updated us and let us know when a plan was not followed so that we do not have to second guess why things did not happen.

Happy New Year

Zane remains intubated, he xray looked better then the day he was on cpap  but since then his xrays have not shown any improvement.  He has chronic lung changes and although he has better saturations while on the ventilator, the ventilator itself causes damage to his lungs. This is one of these catch 22 situations, you do not want to extubate until you know the infant is at optimal nutrition and "health" so that he does not fail extubation but the longer you wait the more you cause problems to his lungs.

Zane also lost his PICC line the other day (it was found leaking in his bed) two people (RN/NNP) attempted to place a line neither one was successful, a third person (RN) placed  a peripheral line so he has some access (good going third RN :-) she was also the only RN to ensure Zane has proper pain control.  It infuriates me when providers fail to order or give pain medication,  placing a PICC is painful and each stick is painful ---just because the infant can not cry or ask for pain medicine does not mean they do not need pain medicine!!!

Zane received yet another blood transfusion apparently Zane 's magic crit number is 32 once he starts to dip below this number his oxygen saturation start to have wide swings. Because he received blood his feeds were stopped again and he will have to once again work up on his feeds.