16 weeks too early

1 Year Old today

2010-11-16T20:35:00.000-05:00

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

2010-04-20T20:25:00.000-04:00

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

2010-04-15T21:54:00.000-04:00

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

2010-04-12T08:35:00.000-04:00

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!

2010-03-25T21:42:00.000-04:00

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

2010-03-19T21:04:00.000-04:00

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

2010-03-19T20:58:00.000-04:00

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

2010-03-03T20:01:00.000-05:00

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

2010-03-03T19:42:00.001-05:00

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

2010-02-13T00:07:00.000-05:00

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

2010-02-05T10:34:00.001-05:00

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

2010-01-31T17:24:00.000-05:00

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

2010-01-25T22:19:00.002-05:00

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

2010-01-18T19:21:00.000-05:00

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

2010-01-15T20:01:00.000-05:00

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+

2010-01-15T19:12:00.000-05:00

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

2010-01-14T20:14:00.000-05:00

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

2010-01-08T09:38:00.000-05:00

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

2010-01-06T19:31:00.000-05:00

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

2010-01-04T02:02:00.000-05:00

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

2010-01-04T01:43:00.000-05:00

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.

1 step forward 3 steps back :-(

2009-12-30T20:39:00.000-05:00

The roller coaster ride continues, Zane was unable to maintain his oxygen saturation on CPAP and we were called at 3 in the morning and notified that he had been reintubated and placed back on the conventional ventilator. This is not unusual as he is still so small (630 grams) but the news is never easy to receive. His xray shows cystic changes in his lungs (from being on the ventilator, prematurity and steroids).

Zane received platelets yesterday as his count was only 13, a normal count is between 150-400, even after the transfusion his platelet count still remains low at 43. Another septic work up was done, although he remains on vancomycin, gentamicin and fluconazole from his first septic work up 4 days ago his bands have increased.
An increase in bands( immature/young neutrophils (a left shift) usually indicates an infection, the fact that his body is using up platelets also indicates a infection, perhaps this new blood culture will show what organism Zane is fighting so that the right antibiotics can be prescribed.

Zane continues to receive TPN and lipids along with oral gastric feeds. He is getting 3.5mg/kg/d of protein, the hope is that he will start to show consistent weight gain of 20 grams a day, once he shows consistent weight gain they will extubate him again to CPAP.

30 wks I'm a big boy now!!!

2009-12-28T10:17:00.000-05:00

After a rocky start to the previous week, Zane once again showed us how much a little body can endure. With much fanfare from the staff and great team work of his NNP and RN's Zane was extuabed to nasal CPAP. For a brief few minutes he no longer had a tube in his throat and he was looking around with his eyes wide open as his parents ooohhh and ahhh at him and his grandmother made snide remarks about him looking like an extra to the Wizard of Oz :-)

His red eyebrows really stick out now! He was placed on CPAP which is not pleasant the baby experiences continuous air being blown up your nose, it is less invasive than being intubated and the infant needs to work at breathing. CPAP will give the baby positive pressure to help keep his alevoli open. This method is used when the infant's oxygen needs are less than 40 % . It is my hope that he will be able to maintain his saturation's while on CPAP and that he can be changed to nasal canal and then hopefully room in a short time span.

Zane was not happy when the CPAP was placed and he looks like he is giving his nurse a heck of a time as he was very mad!!

Luckily he settled down once he was place on his belly and he did well for the rest of the night. In the last picture he appears to be saying what ever. Zane is making great progress and the power of pray is evident in each of his milestones!

Christmas Day 29 5/7

2009-12-25T20:54:00.000-05:00

Zane is covering his face so he does not see Santa, he knows he has been a good boy and was hoping to give his mom a present of being extubated unfortunately it did not happen. Instead Zane was worked up for presumed sepsis. His heart rate has been 180-200 and has started to show some blood pressure instability. His feeds were stopped and he is only getting his nutrition through his PICC (piv). Blood culture were taken and he was started on ampicillian and gentamycin again....

Today was also the day that Nicholas, Fred and Victor were allowed to visit and meet their nephew, but with him possible being sick only the parents went to the bedside.
Zane's sodium remains low, his diuretics have been increased, although he is making some weight gain it is slow, he will be 30 weeks on Monday and has never been without a breathing tube,

I have to wonder what effects will all these arterial sticks have on him later in life, will he have mobility problems due to all the heel sticks, how he will handle pain in the future as he is subjected to painful procedures on a daily basis?
He was given a blood transfusion on Tues looked good Wed and tonight he looks pale again., on the bright side his face has filled out he does not appear as fragile and he has a wicked (get it sam) personality!

28 1/7 almost at birth weight

2009-12-16T18:36:00.000-05:00

Zane remains on the vent, it is hoped that he will grow quicker as the vent will do most of the work of his breathing and allow him to use his calories for growth. Although this is was the plan, no one told Zane and he continues to breath over the vent and use his calories to watch what is happening in the outside world. He opens his eyes to our voices and will wiggle and squirm as funny as it sounds he has a personality and he lets you know what he likes and what bothers him. If a heel warmer is placed on his foot he starts to have desaturations--I can only attribute this to fact that he somehow realizes warmth on his foot is followed by a stick and someone squeezing his foot. When Samatha kangroo's him (this is where he is placed inside her shirt and he is skin to skin with her) his heart rate goes down to 150's and he looks comfortable, when he is moved back to the isolate and placed in his snugglie it takes him 15-30 minutes to calm down. I can only wonder how all these experiences will affect him later in life.

Zane is still being "fed" 1.5 ml of breast milk every six hours. He has tolerated the feeds and his stomach remains soft. Hopefully be the end of the week they can start to increase his feeds this will help him gain weight. He is still having high glucose readings but has not received any insulin in the last 24 hours. He is looking pale tonight so we expect that he will receive another blood transfusion today.

28 weeks

2009-12-16T18:23:00.000-05:00

Yes we finally hit the 28 week mark, so much has happen to little Zane but he is a survivor and a fighter. I am amazed at how well my daughter has held up-- the stress is unbelievable. The stress affects everyone in the family, your daily routine is now planned around the trip to the hospital. I always thought I was a good nurse who could empathize with the parents of my primary (the baby you take care of and follow until discharge) but now I have deeper respect for what these families have to deal with on a daily basis.
Your life is for ever changed, when the phone rings you start to dread answering it for fear that the news will be bad., even when things are going well you hold your breathe anticipating that any minute something will happen. Your start to build you day around routines, if i call early he has a good day, or if I miss a visit he gets sick, if I wore green with yellow he needed a septic work up but when I ate a taco the day before he tolerated his feeds--- you perceive relationship to exist and hope that you figure out the right steps to take each day to ensure the safety of your baby. I feel as if I am walking through a dense fog I can see the light at the end of the road but I am unsure of what steps I can take to quickly get me to my destiny. I just want to walk into the unit and hear he is on full feeds and can go home, instead I know that he is not out of the "woods" yet and at 575 grams we have only started the journey towards being discharged.
I am so thankful for Zane's nurses, his primary team allows me the opportunity each day to function with some normality and to know that he is being watched by those who not only love him but are watching out for us (his family).

Ok enough rambling...

3 hours of hold time

2009-12-13T06:56:00.000-05:00

A big thank you goes out to Carolyn she was the nurse taking care of the baby today and she snapped this photo of mom and dad., notice the red hair is Jonathan's beard I think the baby also has red hair in his eyebrows.,
Zane only lost 1 gram last night so his weight is now 575 grams, he is almost at his birth weight, he is still receiving TPN through his veins to give him calories, the glucose is 13% and his blood sugars have been stable between 250-300 and only needed 1 dose of insulin yesterday. He still looks very frail you can count all his ribs as he has no body fat but he does look good in his santa hat

A mother knows...

2009-12-12T17:05:00.001-05:00

A meeting was set up between Samantha, Jonathan (yes I forget to mention him) and myself with the attending, neonatal nurse practitioner and social worker regarding the current plan of care for Zane. The attending did a great job going over what has happened with Zane so far and what can be expected to happen in the next few weeks. Both parents wanted to know when he would start to eat and they were told Sunday. Eating to most parents equals progress. Saturday will be his last day of antibiotics and one more xray and he should start trophic feeds Sunday morning.

While mom was watching him she kept telling his nurse and the NNP that Zane was trying to pull his tube out of his mouth. He holds onto the tube and the tape, and because he has some much saliva in his mouth the tape loosens up and he can pull on it, as you can see from the photo is awake and he does respond when you talk to him. Notice the red mark on his cheek that is from the RT (respiratory therapist) retaping the tube. The white tape that says SPO2 is a monitor that is placed on different extremities to read his oxygen saturation. If he moves his hands the reading can go down, most parents watch the screen as they are aware of the meaning of the numbers, I always tell the parents watch the baby but it is so hard---the life of the baby comes down to numbers while in the hospital. Saturation, heart rate, blood pressure, labs....
After I snapped the photo we had the meeting when we walked back to see the baby again we noticed that his tape and been redone...mmmmm seems as if maybe Samantha was right Zane was trying to pull out that tube :-) Notice in the photo's he keeps his hands up by his face. This is developmental correct if he was still inside the womb he would be placing his hands into his mouth, by placing Zane is these positions it is hoped that he will have fewer problems when he leaves the hospital

A mother and child reunion......

2009-12-10T12:59:00.001-05:00

Zane continues to do well, he has had several stools from his ostomy and his rectum. As silly/gross as it sounds to write about body functions Zane's progress is based upon several of these values each day, urine output, weight gain/loss, stool, blood pressures and glucose levels. These details help to determine his orders for the day and whether he needs more lasix, increase calories, more fluid , less sugar etc.
Zane's ostomy site is healing well, he only has a small area that is open which is being checked daily by the ostomy nurse as well as the surgeon.

Zane will stay on the vent for several more days, the hope is he will put on weight because the vent will take care of some of the work of his breathing, but if you watch him for a while you notice that he is always breathing over the vent and he has a 90% leak. Unfortunately when he is placed on CPAP (it is a mask that goes over his nose and gives him so oxygen and air flow) his stomach will retain air and it can make it harder for the baby to breathe, the bigger the stomach the less room the lungs have.

Even with all that has been going on, Zane has held his own and tonight his nurse (Shannon)was able to take Zane from his isolate and place him on his mothers' chest. His heart rate never skipped a beat and his oxygen saturation stayed above 88. Samantha never looked happier, she had such a glow about her and Zane had a peaceful expression. He stayed with him mom for two hours, she hated to let him go and I bet he hated to go back to his isolate (I swear I saw him raise his fist up at me)

27 2/7 I am off the JET

2009-12-09T09:30:00.001-05:00

Although Zane has yet to gain weight he was able to wean off the JET and is on the conventional ventilator, maybe, possible tonight he will be put to CPAP. When we go to visit him him, he will open his eyes and moves his hands as if he is acknowledging us. He has been sucking on his pacifier and tries to get his fist into his mouth. He looks so pale/grey to me, it amazes me how much this little boy has been through and he continues to fight. His replogle has been removed only his endotracheal tube (ETT) remains, his vent settings are very low 18/5 rate of 30. He has a 90% leak around his ETT so we know that he is doing a lot of the work on his own

He has multiple bruises and you can see in the photo's how frail he looks, yet when we call his name he opens up his eyes. His weight is still 580 grams he has yet to make his birth weight. Surgery said that he can start trophic (small feeds 1-2 ml to prime the gut) feeds on Thursday since he has started to stool out of his ostomy site. Now Samantha and Jonathan will have to learn how to place an ostomy bag .....oh what fun!

PDA ligation is over...

2009-12-04T21:03:00.000-05:00

Hard to believe---- but only 3 weeks into his young life and Zane has already had 3 major surgeries, the last one being today when his PDA was ligated. His surgery took a little over an hour, per his nurses he did well and his oxygen saturation's came up during surgery (guess he likes his drugs) Actually from what I have seen with Zane he does much better on the JET when he is not working against it and that only happens when he gets some vecuronium (it is a paralyzing agent) and his morphine.

Prior to surgery Zane opened his eyes and looked at his mom and dad, as if to say I am going to be ok, it is amazing how such a little baby can already steal such a large part of your heart.,hopefully from now on the post will just be about Zane's weight gain and how quickly he is growing..

Keep your prays going as the are being answered on a daily basis... and a big thank you to all his nurses without your care Zane would not do as well as he has done

Abdominal surgery

2009-12-02T22:14:00.000-05:00

Zane vent setting increased last night his peep was 8.5 and pip was 29 on the JET, because of these settings it was decided to proceed with his laparotomy instead of his PDA closure. Zane was able to tolerate the surgery and lost only a few centimeters of his bowel, a ostomy was created which can be closed once he gets stronger and weighs more @ 2kg. Zane was also started on decadron today, this is a steroid that is being used to help decrease inflammation in his lungs, some of the side effects is glucose instability and can increase his risk for cp (cerebral palsy)

Zane's primary also noticed that he keeps his fingers closed and does not like to stretch them out so she made him little hand splints to keep his fingers straighten out until he is big enough to have PT/OT take care of him.

Here is a photo of two of his primary care nurses, notice they are wearing their gloves.....:-)

Hopefully Zane will settle out tonight so that he can have his PDA ligated tommorow., so many surgeries such a small infant....

26 2/7 Look at those peepers

2009-12-01T21:15:00.000-05:00

Finally Zane has opened up his eyes enough to know when he is looking towards us. We can also see some blonde highlights in his hair now. Becuase he can open his eyes his face is more expressive. I commented to Samantha that he looks like ET big eyes big head and long fingers :-) but at least his ears are not the largest part of his body!!
Zane is still on the JET with high settings PIP of 23 PEEP of 8 and rate of 420, he does have more desaturations (oxygen levels less than 84)and is still on dopamine. His lungs xray shows changes in his lungs, but until he can have his PDA closed he will not be able to get off the JET or have his lungs heal or grow.

He has is PDA surgery scheduled for Wed 12/2 at 12:30 and than towards the end of the week he will have a laparotomy done to explore his intestines to see if any he has any additional areas of dead bowel. The next few days will be tense as Zane will have to fight hard as his little body goes through two major surgeries.

Samantha had Zane baptized today, a shell was used for the holy water, you can see how small Zane's arm is compared to the shell

26 0/7

2009-12-01T20:34:00.000-05:00

It has been a very busy few days, Zane has held his own and his stomach looks better not as dusky and less drainage coming from the site, unfortunately his UAC had to be removed, the longer it stays in the higher the risk for infection and his right foot pinky toe and big toe were turning blue. A sign that a clot was forming on the end of the UAC. One of the benefits of the UAC was it kept track of his blood pressure which allowed the nurse to titrate his dopamine drip. His dopamine was running to maintain his blood pressures between 25-30. Zane would now require 15 minute blood pressure readings which is not painful but certainly uncomfortable. He also would have to have heal sticks or arterial sticks for his lab draws.

25 6/7 24 hours post op

2009-11-28T14:45:00.000-05:00

Zane was off the epi. by the morning and his blood pressures remain stable, they are looking for a goal of 25-30 on his maps. Usually they like the map to be greater than gestational age anything 25 and above is good. His dopamine has been anywhere from 8-20mcq. He did receive another blood transfusion today, which is interesting as their are some theories that blood transfusions can increase the risk of NEC., was it the neoprofen, prematurity or blood transfusions that lead this to happen?
His belly looks dusky and dark to me and is firm and tender, he still has drainage coming out of the site, it will be a few days before the surgeon can tell whether the drain fixed the problem or if a lap. is required. The encouraging sign is that his blood gases are not acidotic, if they were acidotic you would think he might have dead bowel also his lactates are low, this is all encouraging and perhaps Zane only had an isolated perforate bowel. A PIV was placed even with his UAC still in place they needed another form of access to run his blood through.
Zane was started on Zosyn last night and fluconazole today, his platelets keep dropping so the thought is he might have a fungal infection. His fluids are at 150ml/kg as he appears to be dry based upon his labs. His sodium is low and his BUN is 60 and creatine is 2.0 (indicated kidney failure) The attending came and spoke with us today and he answers all our questions, it is also interesting to me to hear the reasons why they start a new drug or increase fluids as each attending wants to do the best for the infant but they all have their own focuses.

bedside surgery

2009-11-27T17:38:00.001-05:00

Zane had surgery at the bedside. His surgeon (the best) placed a drain in the right lower quadrant of his abdomen. His xray showed a lot of "free air" and the drain allows the air to escape. He has a replogle in place-- this is a tube that goes into the belly and helps to decompress the stomach and remove any buildup of fluids. His dopamine is now at 15mcq/kg/min. He is on 150ml/kg of fluid and he has had no urine output. It would not surprise me if he is placed on epinephrine to help maintain his blood pressure. This poor baby is going through so much and he is so young, I pray that his parents have the strength to endure the road ahead of them.

25 4/7 Free Air

2009-11-27T10:32:00.002-05:00

Free air is not a good thing. In fact it is one of those terms that the NICU nurse hates to hear. It is an indication that at some point the baby's intestines had less oxygen and became compromised. The bacteria in the intestines builds up and actually is released, which causes the air to escape. This air can be seen on xray as a bubble over the liver. Surgery is called and either a drain is placed or a laparotomy can be done. The laparotomy actually examines the bowels and determines how much has been affected and either an ostomy is placed or the infant is closed back up. Unfortunately for Zane he is too little and compromised to withstand a laparotomy right now, so only the drain will be placed. The hope is that the drain will allow the air to escape and give his bowel time to heal.

video of a PDA ligation

2009-11-26T19:08:00.001-05:00

It is difficult to explain the surgery. I found a video on you-tube that can be viewed of another preemie who had the same surgery., http://www.youtube.com/watch?v=SOj6K_BoIAc

Zane is currently on dopamine as his urine output dropped to less then 1mg/kg, hopefully tonight he will get another blood transfusion to "tank him up" before surgery as he needs all the red cells possible for oxygenation.

25 3/7

2009-11-26T11:25:00.001-05:00

Zane remains on the JET ventilator and his lungs have several areas of PIE. He still has not stooled and his urine output has decreased to ~ 1.4ml/kg/hour. He had his last dose of neoprofen Wednesday night but he still shows signs of a PDA. He was echoed today and I would not be surprised if the echo showed that his PDA was still open. If the PDA remains open he will need to be ligated and hopefully that will occur in the next day or two.

His UVC (umbilical venous catheter) was removed as he had a PICC line placed. A PICC (peripherally inserted central catheter) will allow Zane to receive intravenous fluids (TPN ) and lipids and is a long term IV, so he will have fewer peripheral IV sticks during his stay. Kudos and thank God for the nurse who placed his line :-)
Zane was lucky that he had a great neonatal nurse practitioner on service last night; she kept close tabs on him and took the time to explain the xrays and what her plan was for him for her shift. As each day passes I realize how much the "luck" of the patient is dependent upon the nurses and doctors who care for them. When newer nurses and inexperienced physicians work in tandem, the results can be disastrous for the patient.

25 1/7

2009-11-25T08:49:00.002-05:00

Zane's day was filled with multiple ventilator changes and blood gas draws. Today he had a resident (new MD) taking care of him, who in my opinion should not be in the intensive care units. They are learning how to take care of patients, but this particular population is too fragile. Samantha wanted to know what a grade II bleed meant and the resident handed her a paper and told her to "read this" as, "it explains it in terms you can understand". This was really rude in my opinion and it did not answer her questions.

When I saw Zane tonight he just looked like he was getting "septic" (sick) with some sort of infection. His white count is up again and he was not moving as much. His BUN is high >80 and his creatine is high 1.4 which indicates he can be dehydrated, which he is, as his fluids are kept lower to help close up the PDA and also he has immature kidneys.

I am thankful for the wonderful nurses he has, as they are the ones who make all the difference in his care, they are the ones who reviews labs, anticipate orders and can help make suggestions on what Zane likes best, the public does not realize what an important part the nurse plays in the care of the patient. The knowledgeable nurse can make a great save whereas the newer inexperienced nurse may follow orders that are not in the best interest of the infant

One of the great things our unit does is called primary care nursing, this helps to ensure that each baby has a team of nurses who will take care of him when they are scheduled to work. This allows the nurse to learn the babies "natural" behaviors and also to alert the health care team when the baby is just not right. It allows the parents to bond with a team of nurses and to feel more confident that anyone who cares for their infant is taking care of him on a daily basis.

25 0/7

2009-11-25T08:35:00.003-05:00

Today was the day we were to hear about the results from Zane's head ultrasound, along with his echo. No surprise regarding the echo: his PDA is still open with a L-R shunt present. A PDA is a patent ductus arteriosus. The ductus is a vessel about the width of a plastic coffee stirrer that connects the pulmonary artery with the descending aorta. When Zane was in utero the DA takes the blood and shunts it away from the lung since the infant does not need to use his lungs for oxygenation while in utero. If Zane had gone to term his DA should have closed 12- 24 hours after birth.

Why did Zane's DA not close at birth? First he is premature. Infants who weight less than 1000 grams have a >80% change of having a PDA

Next he received 3 doses of surfactant to treat his respiratory distress; surfactant helped to increase lung compliance and increases the alveolar expansion (which helps with oxygenation) but surfactant can increase symptomatic PDA

Some of the signs Zane showed was a murmur, increase need for respiratory support (higher oxygen and higher settings) he will be treated with another 3 rounds of ibuprofen (this closes the PDA) and he will have another echo on Thursday if the PDA remains open then the only option left is surgical ligation.

His xray also showed atelectasis on his right side and a increase in pulmonary edema (wet looking lungs) and PIE. PIE is pulmonary air leaks that happens from over distention of the air ways, this is something that occurs with frequent vent changes when trying to balance the need for minimum ventilator support but enough support to maintain good oxygenation and blood gases. Placing the infant on the JET helps to minimize this trauma.

The other notable lab values was a 2x increase in Zane's white blood count (which indicates infection) he was started on vancomycin and gentamicin.

Zane's hemoglobin also dropped (due to the frequent blood sampling) and he required a 5ml/kg blood transfusion.

The head ultrasound showed a grade II bleed on the right side only, this occurs because the blood vessels are very thin and highly vascular and fluctuations with the cerebral blood flow can cause a bleed. What causes fluctuations, increase/decrease of blood pressure, changing the baby's diaper and lifting him too high, turning him and not keeping him in a midline position -- and just being so premature, he will have additional head ultrasounds to monitor this bleed during his stay at the hospital

24 5/7 mommy gets to hold

2009-11-21T19:56:00.002-05:00

Just some quick facts, first for those who are reading this blog but are unfamiliar with myself or my daughter Samantha,, prior to Zane birth she had two miscarriages. When she found out she was pregnant with Zane I really did not acknowledge the pregnancy for fear that she might miscarry again --when she hit the 23rd week mark I relaxed and started to prepare for my upcoming grandson birth in March....when Sam went into premature labor I panicked because I realized what an up hill battle this would be, I am a NICU nurse (neonatal intensive care unit) and taking care of premature infants is second nature to me but I am all too aware of the ups and downs associated with their care...so every day I hold my breathe waiting to I hear from one of my colleagues about Zane's progress

Today Zane was taken care of by Ashby who allowed Samantha to hold Zane (in his isolette) while she changed out his snuggle. Samantha held him very careful and she was afraid to move she said she could feel his heart beating and him breathing but she did a wonderful job and Zane tolerated the handling well, He is back on his bili lights and still has a metabolic acidosis, a loud murmur can be heard and he is receiving his last does of neoprofen tonight. A echo will be ordered on Monday to see if his PDA has closed----my bet he will need another round. Because of the PDA he has extra fluid shunted to his lungs and it is harder to get off the ventilator, his settings are not horrible rate of 32 18/5 he seems to like his pressure.

24 4/7

2009-11-20T22:55:00.000-05:00

Samantha was able to help with Zane's diaper change, she was also shown how to use containment to help settle Zane during assessments, she was grinning from ear to ear especially when he held onto her finger, she claims that he "mouths" the words I LOVE YOU when she talks to him...

24 4/7

2009-11-20T22:42:00.000-05:00

Zane is holding his own he has been put back onto the conventional ventilator he was given blood today to help his metabolic acidosis, he was off his bili lights today, although we expect them to be back on in the morning from a rebound bili level. He has a great urine output but has not stooled yet, with only hypoactive bowel sounds. His pda is still open and he is being treated with neoprofen, his weight is now 475 grams he is down 125 grams from birth.

24 2/7 from gummy bear to prune

2009-11-20T22:22:00.001-05:00

This blog will be used to give quick updates on Zane's progress so that others who are going thru this will have a point of reference. One thing that my daughter found very helpful was to hear from others, the good and bad news so that she could brace and prepare herself for the next few weeks

Zane was put on the JET ventilator this is easier on the lungs and helps the baby to blow off excess CO2, the jet gives 420 breaths a minute and the baby jiggles while on this vent he looks like the spokes model for the jello commericals

Jet

Zane enters the world 600 grams

2009-11-20T22:03:00.001-05:00

24 0/7 weeks, Zane decided that he no longer wanted to wait to see the world, and he proceeded to kick his way out, 30 mintues later via an emergent c-section Zane was born. He did cry but his heart rate was less than 70, he was intubated and given surfactant and brought back to the NICU- neonatal intensive care unit. As you can see from this photo he was bruised on his legs from all the kicking he was doing, he is very ruddy and he is under bili lights.....as a good friend said he looks like a gummy bear