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.