Three Things

Baby Z is on the up and up - literally - he loves sitting up and looking around and he is getting to do it a lot more.  We met with the attending doctor and found out there are only 3 things we need to work on to get him out of here.

1.  Ween off the morphine 

2.  Ween off the oxygen support

3. Prove to us that he can eat on his own and gain weight

So now for the report on these three:

1. He was taken off the constant drip of morphine and instead they are just giving him a shot of it every 4 hours.  They will continue this for 24 hours and then stop.  Hopefully he will not exhibit any withdrawal symptoms.

2.  He was taken off the warm vaporizing nasal cannula and put on a regular one at 1 litter.  So far so good.  They will ween him down to .5 liters and then they will turn him off.  

3.  He is taking his full feeds via bottle.  No more feeding tube!!  That is as long as he keeps up the good eating.  I also get to breastfeed him.  So every feeding I am there for breastfeeding it will be.  Right now I am not spending nights at the hospital so he'll get half and half.  But that may change depending on his progress.  Both the lactation specialist and the OT say he looks great when he is eating but the attending doctor sounded like this step would be the most time consuming and difficult of the three - he just needs to keep eating and gaining weight.  Simple yet crucial.   

We also went through all the things that need to happen before he can be discharged.  Things such as the hearing test - he took it today and past.  Then there is the car seat test - we have to bring our car seat in and let him sit in it for 90 minutes to prove he can make it home safe.  There is the chat with his pediatrician and a final chest x-ray.  And then there is the MRI.  Apparently babies that are in the NICU as long as he was have to get a brain MRI to just check for any brain damage.  We had the MRI scheduled for tonight and it was quite the process to get him ready.  

First you fill his ears with blue ear wax, then cover them with yellow "ear muffs"

Then you swaddle him up tight, making sure to pin down the arms and legs. 

Then you move him into a special carrier and strap a blue intertube of sorts to him

Cinch it in tight

Then they vacuum pack him - literally.  They suck the air out of the blue intertube and pack him in so he can't move. 

As you can tell Baby Z was a little nervous about the whole thing.  Since his ears were all plugged up and he couldn't move a muscle he just got wide-eyed and stared. 

As they were wheeling him out of the NICU they ran into Dad and Big Sister who were waiting for Mom and Grandma Z to come out.  Dad scooped up Big Sister so she could finally lay eyes on her little brother.  As for first impressions I don't know if this would be the best since he was wide-eyed and vacuumed packed but she finally got to met him.  Her response, after a long pause, "Baby Yak (that is how she says Zach) hurt?"  It will be so nice when she finally gets to hold him and see how much fun a little brother really can be.

Other big news.  Grandma Z arrived to help out with Big Sister.  We really have been calling in all the troops.  She too came well prepared to spoil.  Big Sister is in heaven.  And since Grandma Z is here we figured she might as well meet Baby Z too.  It was joyous.

Our Little Addicts

Baby Z continues to do well.  He is so alert and aware now days.  He will respond to you and loves to sit up and stare at all the machines around him.  He is so sick of lying down.  I got to cuddle and hold him all afternoon and he loved nuzzling into my shoulder and neck - it was wonderful - I feel more and more like I have my little boy back.  And I am becoming more confident holding him, even with all the lines.

His progress is amazing! He is so strong.  He is down to 2 liters/minute on the nasal cannula which uses moist, heated air.  Next step, getting him on normal room temperature, un-moisturizer air through the nose. He is up to full feeds via a bottle.  Next step, nursing!!!  He still has a little difficulty latching but the OT (Occupational Therapist) said all he needs is a little support under his chin while he is eating, so I tuck my fingers under there and he can take the full bottle. Things are looking really good on these fronts.  

The main struggle is the weening from the neurotics.  We have ourselves an addict.  They had taken him completely off the Versed and the Morphine on Saturday but the next morning he was showing major signs of withdrawals - sneezing, hiccups, very fussy,  not interested in food and then throwing up when fed, not sleeping - basically the same symptoms a heroine addict has when they go through withdrawals.  So they hooked him back up to a low dose of morphine - after a little reminder from Mom that he was on .02 ml NOT .1 ml when he was weened - just another blessing of being able to spend so much time at the hospital and keep an extra eye on our little guy.  Today they turned down the morphine to .013 ml which is the lowest the machine will go and he is doing fine.  However, while changing out the lines the morphine line got kinked (I was holding him so not making it easy on the nurse) and in the hour it took for the alarm to go off and alert the nurse, Baby Z was already showing signs of withdrawal again - he just wouldn't stop sneezing, his eyes go really big and he got very angry and irritated.  So we learned from this experience that even though he is on the lowest dose possible he still really needs morphine to remain comfortable.  Tomorrow we are meeting with the doctors to discuss a weening process for him.  We need to dry him out soon so we can get him home.

Our other little addict is Big Sister, she is addicted to Kipper.  She wakes up demanding it.  Whenever anything goes wrong in the day she demands it.  She tries to get to watch it before bed.  Kipper, Kipper, Kipper!  (Have you seen this show?!)

Granted, Mom and Dad are giving in a little too much but I keep reminding her that as soon as her little brother is no longer withdrawing, it will be her turn.  I feel that we will soon be getting back to a more normal lifestyle.  

Boy

Tonight after Nathan had picked me up from the hospital and I had given him the full report he turned to me and said "If this is what it takes to get a boy in our family..." My response, "We may only have one."  Baby Z has given us quite the roller coaster ride this first two weeks of his life, but he is definantly worth it.  One of the nurses told us the reason he has given us so much trouble is because he is a "wussy white boy."  Apparently white males are the ones that take the longest to recover - black females are the quickest.  So Nathan now has his boy - the namesake for the Zollinger family - but boy oh boy was it a trip getting him to stay here.    

As for the latest updates. He has also made HUGE strides and according to the fellow (the senior resident over him) we are now looking at days before he can come home.  Granted days can turn into weeks but...we hope not.  He is currently drug free.  Tonight they turned off both his Versed and his Morphine and thus far there has been no signs of withdrawals.  He has also had his oxygen flow turned down to 4 liters/minute and although his breathing is still quick the doctor isn't worried, she says it will just take some time for his muscles to be strengthened.  He is also working his way quickly up the feeding ladder.  In fact, by tomorrow he should be at full feds (60 mL).  Granted he is only taking about half of that via bottle but still that is a big step to getting him home.  They have scheduled an evaluation by a Occupational Therapist (OT) for Monday.  Baby Z can suck but he can't latch so we have to get that figured out.  Meanwhile, Mom and Dad get to help out with the bottle feeds AND we even got some nursing time in, more for stimulation then for feeding but nonetheless...that was huge for Mom.  Each day our little boy gets more and more personality and it is great to have him awake and not drugged up.  He really is a sweet little spirit.  We love our little baby boy.

Meeting his Aunt Marissa - aka Big Sister's Nanny

Mom getting to feed her boy - notice how alert he is, do NOT notice how tired Mom looks.

Thankful

Today, like many of you, we are thankful.  Thankful for family, for friends, for a good job, and a home, and a home away from home (aka the Ronald McDonald Home).  We are also very, very thankful for the medical professionals that have helped keep our little Baby Z alive.  Nathan revealed to me today a bit more about Baby Z's condition the night he was transferred, apparently it was 50/50 whether he'd live or die that night - we are thankful he lived.  We are thankful for God giving us children to raise.  A Big Sister who is stubborn and headed full speed into the terrible twos.  We are thankful for Baby Z and the many many things he was already taught us in his short 13 days of life.  We are thankful for the Holy Spirit that brings us peace and comfort.  We are thankful for warm showers - which are hard to come by in this house but are still available in time of greatest need.  We are thankful for a sister and brother-in-law who prepared a gourmet Thanksgiving meal just for us - a home cooked meal works wonders on the spirits.  We are thankful for warm beds and good nights rest that help us make it through another day.  We are just so very thankful.

As for Baby Z's update today.  Still weening down the drugs slowly.  He is breathing rather fast so today there was no weening of the oxygen pressure - it was a day of rest and recovery - after all he hasn't used his lung muscles in 10 days.  He is eating well and sleeping well and so just on the mend.  We are thankful for that and pray that it continues.

Drained

Nathan and I have discovered the blessings of being a couple during a trial such as this.  Whenever he is tired and stressed and just can't seem to go on, I am there to pick up the slack.  Whenever I am tired and stressed and just can't seem to go on, he is there to pick up the slack.  It is a seesaw and the past few days I am on the down and he is on the up.  So, I am apologize for not keeping up on the blog and for this rather scattered entry tonight but I am drained, tapped out, finished.  I am recharging though and today my sister came into town to help out with Big Sister.  It was the perfect day because I wanted nothing more than to stay in bed and sleep all day.  Granted, I did get up to play with Big Sister and help her adjust to her Aunt, but mostly I lounged around, read, slept, and ate.  Nathan spent the majority of the day at the hospital and I spent only an hour or so - just long enough to cuddle my son and not have to make any more big decisions or be around for any more big changes.

Big changes I think are the things that drain me the most and these last few days have been full of them.  Yesterday in particular was a big day.  They took him off the ventilator and put him on the nasal cannula - basically nose tubes that blow warm moist air.  I was there for this switch out and although everything went smoothly and he made that transition without even losing much ground on his saturation levels it was still hard to see him gagging on the tubes and crying as they suctioned the mucus-filled spit from his mouth.  And his cries aren't silent anymore - they are horse, sad, weak little cries that make Mom's heart break.  They are also weening him from the morphine and sedative which makes him much more awake and aware.  So he went from tube in mouth...

to tubes in nostrils

all while being awake and aware. One step closer to coming home.  Although it will take at least 6 days to ween him down off the nasal cannula so we still have a few weeks ahead of us.  

The other big news is that we got to hold him.  If you've been following the blog you know they've been telling me for days that I could hold him but yet when it came down to it the nurses would find an excuse to postpone it.  Finally the social worker got involved and I got more demanding and we got to hold him - even if it was a lot of "work" for the nurses.  

It was wonderful and draining all at the same time.  I just didn't want to put him down.  I wanted to just scoop him up and take him home.  It brought back all the memories of the first night we had with him where I was able to hold him close and feed him and I would wake up to his soft squeaks for food.  I miss that and can not wait to have it again.   These emotions drain me. 

Today the big steps were first, a new big boy bed for him

They also weened his oxygen down .1 liter (he is now at .5 liters per minute and if he tolerates it alright they will ween him .1 liter per day).  They also took out his A-line so he is much easier to hold and much more mobile.  Most exciting change today - they fed him some of my frozen milk via a bottle, not even the feeding tube.  They say if his breathing stays down and he is able to latch they will continue to use the bottle, if not they will have to do the feeding tube. But he seems to do well and is handling the real food just fine.  

The only other meds he is on is the morphine and versid (the sedative).  Those both have to be weened slowly - like one every other day.  But he is doing very well and making big strides.  It just drains Mom.  The big decision of the day that Dad had to make was whether to allow a CT scan or not.  It was a bit of a debate but eventually the radiologist decided it really wasn't needed so the resident eased up.  Luckily Mom wasn't there.  I think I need to focus more on the steps he is making and not how long it is going to take to get to the end goal.  Bringing Baby Z home.

Critical?

When Baby Z was first transferred to the NICU at CNMC everyone kept telling me he was the most critical patient there.  That he was the sickest.  That he was a fighter.  In fact, a few of the people that attended to him the night he was transferred (nurses, doctors, and transport team members) have come in and said how strong he is and how much of a fighter he is.  He must have been in pretty bad shape when he was admitted.  The doctor who admitted him was chocking back tears as she was telling me this.  His condition was often described as critical but stable.  He was placed (and currently residing) in the back corner room, the one reserved for the sickest of patients.  He was assigned a nurse dedicated solely to him and that nurse was generally training a new nurse - so in essence he had two full time nurses.  All these things are clear indicators that Baby Z was very, very critical, yet all this time I have never thought of my son's condition as critical.  Never once did I fear we would lose him, never once did I look at him and think he was the sickest patient in this very specialized NICU.  Until now.  Now that he is on the mend.  Now that I am able to look back at where he has been.

When he was admitted, and for the first 6 days of his stay, he was on 100% oxygen with the added nitric oxide and that was barely keeping his saturation levels afloat.  His lung collapsed in transport.  He was on the most intense ventilator - the next step up was ECMO, which is a procedure that pumps the blood from his heart through a machine and then back into the heart, completely bypassing the lungs.  They had completely sedated him so that he was not breathing on his own.  There was literally NO room to go up on his settings.  The machines were keeping him alive.  

Now he is breathing in 21% oxygen - the same as you and me.  He is on a traditional ventilator with low settings, meaning he is mostly breathing on his own.  They are lifting the sedatives and by early tomorrow morning he should be completely off the nitric oxide. They are planning on taking him completely off the ventilator tomorrow morning.  Replacing it with nasal oxygen tubes.  Then they can start feeding him via his feeding tube.  Although they still won't let me hold him (his A-line was acting up so they didn't want him to be moved too much) they say that by tomorrow I should be able to since the A-line will be out - I am holding my breathe.  Although we are not completely out of the woods we are getting close.  We are at least on the right path.  

This morning he opened his eyes and was able to actually focus on me.  It was no longer the blank newborn stare.  A look of terror passed over his face and he started to scream and throw his limbs around - his scream was silent since his ventilator tube is currently running through his vocal cords, but nonetheless you could tell he was screaming.  He realized where he was and what was going on.  I grabbed his little fingers, focused in on his eyes and sang to him.  Calming him down and letting him know it was going to be alright - Mommy was there.  We made eye contact and did not break it for at least half an hour.  He is so aware now.  He squirms and moves and tries to pull the tube out of his mouth.  This awareness means he is healing - by seeing this in him I realize how far he has come.  They now longer have two nurses assigned solely to him - he isn't sick enough that they want to train on him.  His one nurse was given another patient further down the hall - a bit unnerving for Mom and Dad but a good sign that he is improving.  One of the nurses started to ask me basic discharge questions like do I have a car seat for him and everything I need for him at home.  They have told us to bring in some clothes.

And so looking back has taught me some things.  It has taught me how precious the peace the spirit brings really is.  I wouldn't have been able to do all I've done if I didn't have the peace and reassurance that everything would be alright - that I'd have him forever no matter what.  It has taught me the power of prayers - I know there have been many, many prayers in our behalf and we have felt them.  It has taught me that even though the world may try and tell you one thing - like your son is critical - the spirit can tell you the right thing.  The things you need to focus on - like your son is a precious child of God who is being watched over and attended to by those on the other side.  I am trying not to get my hopes too high - we have learned the principle of two steps forward, one step back.  But there is great hope in knowing that your son is no longer "critical."

Oxygen levels are normal - 21%!!

New ventilator

Baby Z wearing Big Sister's socks to keep his toes warm.

Sighs

Today was a day full of big sighs. 

Grandma left us early this morning. SIGH - we miss her a LOT.  She was such a great support, mentally, physically, spiritually, and emotionally.  There is just something about having your mom there that makes everything alright.  Big Sister and I both cried when she left, and Big Sister has been asking for her throughout the day, but Mom will have to do for now.

  

We are blessed to have Dad's sister so close by to help.  SIGH - what a relief.  She and Big Sister get along so well.  With her added help we were able to make it through the day.  Bouncing back between the hospital and the house.  Trying to balance the needs of both children.  Again, I am reminded how much I need the whisperings of the Spirit to help me determine where I need to be and with which child my attention needs to be focused on.  Today, it was Big Sister.  

The biggest sigh? A sigh of relief.  SIGH- Baby Z was transferred from the oscilator ventilator to a normal ventilator.  This was a HUGE step and something we'd been praying for.  This new ventilator will allow him to breath a bit on his own, is the next step to being completely off oxygen, allows for any and all tests to be done which the docs find needful (as of right now they are no longer wanting to do a CT Scan because he is doing so well), and most importantly allows Baby Z to be held.  That is right, I get to hold my baby again!!  It has been over a week and I long for this.  Although he was transferred to the ventilator early this morning and is doing fine they said I had to give him a day before I could hold him.  Tomorrow is going to be a great day.  

Baby Z's stats are great this evening.  Oxygen levels at 24%, Nitric Oxide has been weened to 4 and will be turned down 1 every 8 hours, the pressures on the new ventilator keep going down, and there is talk about starting to ween him from the sedatives and morphine.  His blood oxygen saturations are great and although there is still some off and on with the blood pressure medication all in all he is headed in the right direction.  They removed the IV through his belly button and placed a new Pic-line and IV in his hands - this was a bit of a disappointment since now I am no longer able to hold his hands.  But with this big sigh came the decrease in stress for Mom and Dad, which decreased the adrenalin we've been running on the last week and so we were both hit with a wave of exhaustion.  One more big sigh will be released as we fall into our Tempurpedic beds tonight (who would have thought that the Ronald McDonald house would have such great beds.)