1 step forward 3 steps back :-(

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!!!

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

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

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

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

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...

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......

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

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...

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

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

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

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.