In Conclusion

When I started this blog I knew I was taking a risk.  Perhaps it would only be a week of blogging, so kind of pointless, perhaps months, but I really hoped not. Either way I decided to start the blog and am glad that it only lasted as long as it did.  I don't know that many of you are following this blog anymore, and honestly it was meant more as a journal and outlet for me than anything.  But I figured I should wrap it all up.

Baby Z is doing wonderfully.  He is a normal boy and this experience feels mostly like a very, very bad dream.  We brought him home almost a month ago - we have now had him longer than we didn't.  The one lingering concern when bring him home was his weight.  He came home on a Saturday weighing 8 lbs 6 oz.  By Monday, he weighed 8 lbs. 8.5oz.  - just over his birth weight.  Friday he was up to 8 lbs. 12 oz.  A week later he was up to 9 lbs 14 oz.  The doctor just laughed as I "complain" about him eating all the time - like every 1.5 hours for an hour.  I literally spend all day feeding this kid.  He is catching up and hopefully soon will stabilize. So gaining weight is not a concern.  We have been told to treat him just like a normal baby because he is just that.   

We as a family are beginning to fall into a routine.  Things seem "normal."  Christmas came and went and although this season (my favorite season) flew by, we are very ready to say good-bye to 2011 and all it brought. 

'Tis also the season for babies or so it seems.  At least 10 of our close friends or family have had babies in the last few months.  All healthy, all getting to come directly home.  It is wonderful to have friends and family having babies the same time as you.  It is hard when all of them are having healthy babies and yours is in the NICU.  I remember getting the email announcements or seeing the post on facebook and wondering why they were getting to do all those wonderful things that I expected and yearned to do and I wasn't.  What had I done wrong?  What crazy lesson was God trying to teach me know?  But as I have had some time to distance myself from the situation and look back I can honestly say that I am grateful for this experience and think that all my friends with healthy babies should be a bit jealous they didn't get to have it too (okay, just kidding, no one should EVER have to go through this, but honestly I am glad we did).  

So what made it all worth it?  Why am I glad?  It was the simple lessons I learned.  Nothing too profound, nothing too life changing.  Just simple and needful.  Like the lesson that healthy babies should not be taken for granted.  The ability to have children and raise them is such a blessing and a miracle.  What trust God has in us.  Pregnancy is awful (for me at least) but babies are wonderful and worth every bit of pain and sorrow.  Perhaps the 9 months are more preparation for us - we have to earn the right to have a baby.  Who knows!  But I am very glad I have my two angels. 

I also learned how amazing of a man my husband is.  I always suspected that he was strong but now I know it.  I love him more and appreciate him more than ever.  He took on so much, he carried the majority of the weight so that I could recover and not crumble under the pressure.  He may not be able to win every arm-wrestle, but he protected me from a lot of emotional damage.  He sustained me through this all and was able to keep his job, take care of Addison, and keep me laughing.  He is amazing and I often take that for grant.  

I think however the most valuable lesson I learned was one I already knew but needed to be reminded of, and that is that God knows me.  He knows what I am going through and what I am going to go through.  He knows what I am capable of and what is just too much.  He knows my tests and my trials and has prepared help and support for me.  This was shown to me so clearly.  You see, I needed people to help me during this time and we had so, so much help.  But I also have trouble asking for help and accepting it.  Enter Nathan's sister and her husband.  They moved here in October for a 3 month internship.  They lived with us for the first two weeks of October while they were looking for a place to live.  They hoped the internship would turn into a job.  He has been looking since July.  It did not.  In fact, the whole three months they were here they lost more money then they earned and ended up in just the same spot they started.  However, we needed them and God knew that so they were here.  They were the ones we could call at midnight and have them take our daughter.  They knew our house, they had lived here for 2 weeks, so they could step in and take over where we could no longer.  They knew our daughter's routine.  They knew how to get her to sleep and she knew them and loved them.  They knew us well enough to know what we needed without us having to ask.  They were our sustaining support through this all.  I remember the night Baby Z was being transferred, I was freaking out -literally.  I didn't know how we were going to make it.  Nathan then reminded me that we had them and I was calmed.  I knew we could do this if they were with us and they were - the whole time.  They have since moved back West.  We miss them a lot but know that they were sent here for us because God knew we would need them.  They were our angels.  

I also learned I am a control freak - this I will be working on...for a while.

So these are some of the lessons we learned.  Some of the gems we were given during this time of trial.  I am grateful for them and for all the lessons God teaches us while we are on this earth even though sometimes when it is over it just feels like a very, very bad dream.

(I'll load some pictures later but now I have to go feed Baby Z).

How it all went down

December 3rd was my birthday.  For quite sometime we had been telling the nurses and doctors and whomever else would listen that all I wanted for my birthday was to bring my son home.  However, no one seemed very optimistic, especially the attending doctor.  December 2nd was a rough day.  I was drained and even though all Baby Z was doing was eating and trying to put on weight, he wasn't.  Bringing him home did not seem like it was going to happen anytime soon. And to make matters worse they had decided to move him to a new room, further down the maze of halls.  It was a bit disheartening. I had started to think of that room as home.

And we knew the routine so well.  Nathan said he could always tell how the day was going to be as he came down the hall towards the room.  If the nurses were outside chatting Baby Z was doing great.  If they weren't then we were in for more procedures.  It was just comforting to be in a place we knew and now we weren't.

   So on the morning of December 3rd when I called to let the nurse know I was planning on being there for the 9 am feeding and she told me that they had plans to discharge him, I was shocked.  I couldn't even enjoy the wonderful birthday breakfast my mother-in-law made me.  I just had to get there - I wasn't going to believe this until I heard it for myself at rounds.  So I rushed out the door, to the hospital, up the elevator, down the new hall and realized I had just missed rounds by about 30 seconds.  Rounds always start at 9 am and I was there at 9 am but since Baby Z got moved he was the first one and well I missed it and the nurse only had bad news to tell me.  They weren't going to discharge him because he wasn't gaining weight, instead they were going to start supplementing his bottles with formula.  We had had this nurse before and she was good and we liked her so I started to plead my case.  She listened and agreed and told me I needed to argue my case to the attending doctor so she went out and asked her to come back.  It is a bit intimidating to argue your case to a group of doctors but I just really felt that Baby Z was not going to gain weight in this environment unless I was there 24/7 and that would be exhausting to me, Nathan, and Addison.  And if I was going to be the one there taking care of him then why couldn't I just do that from home.  Everyone (including the attending doctor, chief resident, fellow, and nurses) had told me that babies tend to thrive better at home in a more natural environment.  So if we were just trying to get Baby Z to thrive why not send him home to the place he was most likely to thrive in.  If there were no other medical concerns then his weight gain then let him come home and gain weight.  This was what I argued, along with the fact that my daughter also had problems gaining weight when she was a newborn and I was very familiar with the need to and process of supplementing.  I even offered to drive back into DC once a day for a weight check if that was all they wanted.  The doctor then, amazingly, agreed to discharge Baby Z if I had a pediatrician willing to take over weight checks and she had to be able to speak with that pediatrician before we could go.  I love our pediatrician group for many, many reasons but that day I loved them because they have Saturday and Sunday hours so I could easily have them contact the attending and discuss.  Once this deal was struck I got on the phone to talk to my pediatrician, who contacted the resident and before I knew what was happening I was being told that my baby was coming home!!  I couldn't handle it.  I rushed to the bathroom -the only private place to make phone calls- and called Dad.  It was over.  We were going home.  It was over.

We were a bit unprepared to head home that day, we weren't expecting it.  So when I returned for lunch and we started to pack up it was a bit of madness.  Luckily we still had my mother-in-law in town, and Nathan's sister and her husband came into help. Additionally some of my close friends miraculously showed up to wish me a happy birthday and helped out too. It was a whirlwind of packing, rushing, excitement, relief - literally just plain craziness.  Nathan and I headed back to the hospital - the nurse had called and left us a message saying the discharge papers were completed and we could come pick up our son anytime we wanted - as if he was a pizza or car which just had its tires rotated.  So casual, so easy, just come pick him up.  And to be honest it really was that simple.  We got there, I fed him, we put him in the car seat, and we left.  Some of our favorite nurses came by to wish us luck and as we were walking out the door I felt like we should turn and run before they changed their minds. 

He is yawning, not screaming, although we could say he was shouting for joy.

As we drove away from CNMC we had to smile.  No more paying crazy parking prices just to visit your son (I calculated it - we sent over $100 in parking the three weeks we were there).  No more constantly sterilizing your hands - the scent of Purex hand sanitizer will always bring back these memories.  No more beeps and buzzers going off.  We are very grateful we were there... but never want to go back.  There are a few follow-up appointments however that will necessitate return visits.

We made a quite stop at the Ronald McDonald house to pick up the remainder of our stuff.  (Mother-in-law, Aunt, and Big Sister had taken most of it and headed back home earlier.) This house had become our home away from home.  It was a solemn place but a comfort too.  We are huge believers in the Ronald McDonald homes. 

  

And then we were off.  Back to our home.  To finally all be together as a family  Finally let Big Sister meet Baby Z.  It was heaven on earth.

Best Birthday Present Ever...

Bringing my son home.  

More to come but for right now we are just enjoying being a family.

Patience

I am NOT a patient person.  This is something I am very aware of and so is God.  There have been many opportunities where God has tried to teach me patience.  Experiences with family members, experiences in school, dating, work, church callings, the list could go on.  At one point on my mission, the mission president and I were discussing my current area assignment and he half jokingly asked, "Do you think God is trying to teach you a little patience?"  My response, "You have no idea.  That is the story of my life."

So at the ripe old age of almost 29, you'd think I would have acquired some ability to be patient.  I have failed. I want my son home and I want him home NOW!!  No more waiting, no more monitoring, no more measuring, calculating and weighing his feds.  Baby Z did not gain weight these last two days.  He didn't lose weight, but he did not gain weight either so we wait.  Wait for him to grow.  Wait for him to get comfortable eating on a regular schedule.  Wait for the morphine withdrawals to cease - they are few and far between but when one hits it is hard for me to bear.  Wait, wait, wait.  That is the game right now.  That is the challenge.  Perhaps this time I will learn how to be a bit more patient.  Until then my VERY patient husband will have do deal with my constant complaining.

A REAL Boy!

Big day today!  Baby Z was disconnected from all, that is right folks ALL, oxygen support AND they stopped his morphine AND took out his Pic-line - the last of the IV's.  So as of right now he is free of all support.  They just have a few monitors on him.  Dad kept saying "He's a boy!  A real Boy!"  from Pinocchio.  It was fitting - he has no more strings attached - well besides the two monitors -  but no more life-supporting strings.  He is doing it on his own and doing it well.     

Granted this is not the best picture of him - he was in a milk coma - but it was the only one we got today of his "clear" face.  Did I mention I am breastfeeding him now and he is eating wonderfully and going into milk comas!!  Life is real good right now.  Just need him to fatten up a bit. 

Bath Time

I forgot to mention that we got to give Baby Z our first bath yesterday.  He has had many but we hadn't given them to him.  It was exhausting for everyone involved and I am just glad we had very patient caring nurses.  It was just a sponge bath and he screamed through the whole thing except for when we washed his hair.  He loved that.   For a few moments he was completely free from all monitors and external devices.  Lovely! 

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.) 

Two Steps Forward, One Step Back

Today we really learned the meaning of two steps forward, one step back.  Baby Z was doing so well yesterday.  His progress was amazing and so Dad and I went to the hospital with dreams of no ventilators and discharge papers in the near future.  However, it was not to be.  He is still on the mend and doing amazing but today was a much slower day.  When we arrived his oxygen levels were back up in the low thirties, the pressures on the ventilator had been turned back up, he was back on a low dose of blood pressure medication, and although they tried they were unsuccessful in getting a Pic-line in.  One step back.  It was a bit disheartening.  Our dreams were burst.  But the step back was a small one, one Baby Z needed to recover, catch his breath (literally), and prepare to keep moving forward.  And so tonight as I report the stats we are glad to see he is still moving forward.  His chest tube was removed which meant he got to spend some good comfortable time on his belly.  He was weened down 5 more units on the nitric oxide.  His oxygen is at 27% and the pressures are coming down on the ventilators.  The blood pressure medication is on and off depending on his needs but it is a low dose.  

It was a long day for Mom and Dad.  The day nurse over Baby Z did not instill confidence.  We had planned on returning home for a few hours to gather supplies but Mom ended up spending the full 12 hours next to Baby Z.  There were some blunders including a kinked IV line and a disconnection in the breathing tube that made Mom grateful for the promptings to stay close to Baby Z today.  But it was exhausting.  A huge sigh of relief was given when we found out the night shift was a pair of great nurses that had worked with Baby Z earlier this week and were wonderful.  We are learning to be very grateful for good nurses that care and love for your child so you can go home and rest in peace.  On that note Mom is going to do just that - rest in peace.  Tomorrow is a new day with new steps to be made.  Steps forward.

Here Comes the Sun

Today the sun came out in DC.  It has been quite rainy and gray the last few days.  Baby Z's room has had the blinds drawn since the day we arrived and since both his parents are sun lovers I asked if we could open the blinds and  let some sun in.  They let me.  It lifted the spirits of us all.  There really is power in sun light.  

It was also sunny in spirit today.  Baby Z is one week old and doing so well!  He has been completely weened from his blood pressure medications, is down to 25% on his oxygen (the goal is 21%), is down 5 units on his nitric oxide (he is now at 15), and they have been able to move down the different pressure levels on his ventilator to get him closer to the numbers needed to transfer him to the new ventilator.  There is even talk of taking out his chest tube tomorrow.  The future is bright.  He has also needed less sedatives which means he is awake and aware more.  It is so wonderful to see his eyes (they are blue for now).  And to see his fighting spirit.  This evening when Grandma and I went to visit they were having trouble keeping him from pulling on the ventilator tube.  They had both his hands pinned down under blankets but he kept wiggling them free. He's got fire.

Since Baby Z is doing so well the nurses are letting Mom and Dad get more involved.  We get to take his temperature and change his diapers.  Baby Z sprayed Dad for the first time (and we are sure not the last time) and got quite the shout out of him.  In Dad's words "it was like a geyser coming at me."  

As for other activities...

Dad has created detailed charts to track Baby Z's progress and stats - every three minutes.  Thus he spends most of the day staring at the monitor.  When he is not charting he is quizzing the nurses and doctors learning all he can.  We've determined he is the one who will be documenting this medically.

Mom is in charge of the emotional tracking.  Whether I am typing up this blog (which is a form of therapy right now) or talking and singing to Baby Z, I am all about emotions.  Most of my days are spent by Baby Z's bedside, amidst the looming monitors.  It doesn't bother me as much - it is starting to seem oddly normal.   I don't spend much time thinking about my own recovery but I do know I have been sustained by the Lord in all my activities. 

And then there is big sister.  She is getting the most of out this deal.  The Ronald McDonald House has a huge playroom full of toys and huge stuffed animals.  She is in heaven.  Plus everyone just keeps giving her free stuff.  She is a bit nervous every time Mom or Dad or Grandma leaves - she has become super attached to Grandma, we all are - but overall she is handling things very well. 

We are tired, a bit stressed, and learning to balance our new life but we are happy to be together as a family and feel amazingly blessed. The sun has come out.

Lines

When your baby is in the NICU there are a lot of life saving "lines" that go into him.  IV lines, A-lines, feeding lines, oxygen lines, the list goes on and on.  Before long a small city of monitors is set-up around him monitoring and supporting these lines.  There are constant wissings, beepings, blowings, and gushings going on.  Not to mention the alarms - oh how we hate the alarms.  They really make your heart race.  However, as we have been living this experience I have also learned that there are other lines.  Lines between parent and child.  

A few days ago (11-15-11) my mother and I were waiting to be let into the NICU unit.  This is common.  If there is a procedure going on when you show up to visit the nurses generally ask the receptionist to have you wait before coming back to visit.  And so we were waiting.  I was checking emails and trying to catch up on phone calls when all of a sudden I became very, very anxious.  My stomach started churning, my heart racing, my breaths quickening.  I didn't know why but I just couldn't calm down.  So I said a little prayer asking my Father in Heaven to calm me down and calm Baby Z down.  To allow Baby Z to be relaxed and let whatever procedure they were attempting to happen.  I really felt that my anxiety was a direct reflection of my sons.  They must be doing something that he really did not like.  Out of curiosity, and in hopes to settle my nerves, I asked the receptionist what procedure they were trying to perform.  She called back and found out they were trying to put in an A-line (arterial line - one directly into an artery which allows for more accurate readings of blood oxygen saturation).  They had been trying to get this line in since he had arrived, sticking him 2 or 3 times a day with no luck.  The doctors kept insisting this line go in, however difficult, because it was so vital to monitoring Baby Z's stability.  Thus they kept trying and he kept resisting.  This would easily explain his anxiety.  So I went back to the waiting area and once more sent up a prayer to heaven asking that the nurses and doctors attending Baby Z would be successful in sticking the A-line and that Baby Z would relax and allow for this procedure to be successful.  A few minutes later we were allowed into the room to see him and to our great joy the A-line was in!  No more sticking him throughout the day and much more accurate readings.  It was a miracle and literally an answer to prayers.

Sometimes Nathan and I feel a bit guilty leaving Baby Z alone in the NICU.  We want to be there every moment so that if anything were to happen we would know about it and be there to make the tough decisions and pray mightly the very moment pray was needed.  But we need our rest too and we need to spend time with our other daughter.  And so I am learning that there is a line of communication and awareness that does not need you to be physically present to obtain.  I know that as Baby Z's mother I have been blessed to be aware of his needs and his emotions.  And I know that as a daughter of a loving Heavenly Father I am being blessed to know when I need to pray, when I need to worry, and when I need to sleep and recover and prepare for the days to come.  I am very grateful for all the lifesaving lines in our lives but most importantly the ones between me and my Heavenly Father.  It is because of this line that I am able to help raise his son and now mine, Baby Z.

What's In A Name

Today we got to met with the attending doctor over Baby Z.  He brought us into a conference room and explained to us quite simply what was going on.  It was wonderful.  We feel like we understand so much more about what is going on. And most exciting, he gave us a name for Baby Z's symptoms.  It may not seem like that big of a deal to have an official title for his symptoms, afterall, his treatments aren't going to change.  But to us it was just one more huge piece of the puzzle we are trying to figure out.  And so the name is "pulmonary hypertension."  Look it up on WebMD if you want to.  I'm not going to.  It makes me too stressed and opens up too many doors.  Right now we are just focusing on what the doctor told us and his explanations.  

So we have a name, pulmonary hypertension, that is what Baby Z is being treated for.  But we don't have a cause.  That is what the CT Scan is needed for.  There is a laundry list of possible causes so lets focus on what we do know.  His little lungs just don't have the right pressure so they aren't drawing the blood into them, thus not enough oxygen is getting into his body.  The treatment - blood pressure medication to try and balance out the pressures in his heart and lungs, and oxygen to increase his blood oxygen saturation.  Makes sense, right?.  Good news is that even healthy full-term babies have some adjusting to be made in the lung pressure during the first week of life and so since Baby Z is full term the docs expect to see some natural adjusting going on that will help his case.  Now for the complicated part - the risks analysis.  Apparently oxygen is toxic to the body at too high of levels.  We normal functioning humans breath in about 21% oxygen.  Baby Z has been breathing in around 100% oxygen the last few days to keep his oxygen saturation levels up.  This is alright for a few days - few being defined as 8 or 9 for a newborn.  However, after that, oxygen levels that high can actually do more damage to the lungs.  So Baby Z is on day 6, he needs to be weened down and he needs to be weened down soon.  Weening started today and it was aggressive.  Baby Z was at 99% yesterday evening.  Throughout the night he was weened to the low 70's.  When we left this evening he was at 40%.  The goal is 21% so we are on a great path but have a ways to go.  But even then weening him from oxygen is just one step.  He also needs to be weened from the nitrateoxygen (sp?) a special type of gas they are giving him which specifically helps the lungs open up.  Then there is also the different pressures they are using with the ventilator to blow the oxygen into his lungs.  All those need to be weened down too.  This equals a few more hurdles to jump over before we can get him onto a traditional ventilator and into a CT Scan to find a cause, but for today we are just happy to have a name.

Unmet Expectations

Today was a good day. Baby Z is slowly, very slowly beginning to be weened from his blood pressure medications and from oxygen.   By slowly I mean he is now at 99% oxygen instead of 100%.  And where they usually like to turn down the blood pressure medication by increments of 2, Baby Z prefers to have them turn it down by increments of .5.  We are learning that it is two steps forward and one step back, don't expect anything to happen too quickly. They will get him down and then have to bring him right back up but not as high as he started.  At one point he was completely off the blood pressure medication but apparently that only lasted 15 minutes and then he was right back on it- nonetheless we are celebrating the small things.  Still not stable enough for the CT Scan which will enable us to diagnosis him, but we'll take it.  

He was also a LOT more alert which really made Mom happy.  He had been so sedated I hadn't seen him move or respond to touch since I first arrived at NCMC 3 days ago.  It started just simply.  We arrived in the morning and I proceeded to pull up my chair and sing and talk to him - the norm these days.  And then he started to squirm.  It startled me at first.  Should he be moving?  But yes, of course he should be moving, he is a little boy after all.  Then he started to stretch his legs and roll his feet.  His hand came up off the blanket and stayed upright.  I quickly grabbed his tiny hand - one of the only spots on his body where there is no monitor (they had taken out the IV that was once in it so it was bruised and a bit bloody but bare).  His fingers relaxed and then firmly grasped mine.  FIRMLY!!!  He still has fight in him.  It was wonderful.  As I sang more to him he stretched more and started to show life again.  We then stepped outside for "rounds" - NCMC is a teaching hospital so all the residents and medical students come around each morning to discuss the patient with the attending doctor and strategize for the upcoming day.  It is very detailed and a bit overwhelming but we learning a lot and end up with a good  feel for how his treatment is going.  When I went back inside I was explaining to Baby Z what was expected of him for the day and then it happened his eye twitched open.  Just a crack.  I immediately started to sing my lullaby and it opened again a bit wider.  I started to cry.  He opened it once more and curled up his lips into what almost seemed like a smile and he started to lick his lips and suckle a bit, trying to maneuver his tongue around the two tubes in his mouth.  He remembers me! He remembers what mother's milk tastes like and he could smell it.  It renewed my spirits.  I know he wants to get better, he has to get better.  But this was too much stimulation for such a fragile little man so I had to step away and let him rest.

As I look back on these last few days I realize that a lot of my sorrow is just coming from unmet expectations.  I expected to go to the hospital have a healthy baby and bring him home a few days later in the car seat so carefully installed in our car. I expected to be able to cuddle with him on the bed and sing sweet lullabies to him at night.  I expected to be able to study each tiny part of his body and marvel at the miracle I had been given. I expected to use the play-pen and the bassinet, the bouncy chair and the play mat, the cute striped outfit I had carefully selected and packed to bring him home in.  I expected to get those adorable newborn pictures - we had the photographer scheduled for yesterday - we canceled.  All of these things I was expecting and looking forward to.  Instead I got to spend a wonderful 13 hours cuddling and loving him in the hospital before he was whisked away in an ambulance.  Instead Nathan slung the empty car seat over his shoulder to carry it back to storage the day I was discharged from the hospital.  Instead we folded up the playpen and packed it the trunk of our car to use as Addy's bed in the Ronald McDonald House.  I still sing him sweet lullabies but I am just perched on a chair gently touching his head - one of the few spots available for touching.  I am still studying his body, just from a far and in much, much greater medical detail then I ever hoped.  And I am still getting pictures of him but just not the ones you'd see in a photographer's portfolio.

I have always loved the quote "If we learn to accept instead of expect, we'll have fewer disappointments."  Now I am trying to use it.

Summary and Starting Point

Baby Z was born on 11-11-11 at 5:35 pm via c-section.  He was 8 lbs 8 oz, 20.75 inches long, and had a 14.5 inches head (this huge head is what got stuck and thus created the need for the c-section).  He has dark brown hair and looks like he may have a little bit of Mom in him unlike his older sister.

We had a wonderful night with him where there was lots of cuddling and loving.  However, the next morning he was really breathing hard and fast and so was taken in for evaluation and then admitted to the NICU in the hospital I delivered him in. There he was diagnosed with pneumonia (perhaps?) or aspiration of amniotic fluid.  Either way they couldn't get his oxygen levels to stay up.  About 7:30 pm our home teacher came over and helped Dad administer an anointing and priesthood blessing.  It was a wonderful blessing and very direct on the issues at hand.  

Shortly after the blessing things really got rolling.  The doctors here decided they were no longer able to treat Zach's symptoms and asked to have him transferred to Fairfax Hospital which has a larger and better NICU.  However, since I had a c-section (and was not really giving myself the tender care needed to recover) I needed to stay put and could not be transferred with him.  Although it was hard to see my little boy go and have Nathan go with him we both felt like it was best.

Upon arriving at Fairfax, he was reevaluated and it was decided that he needed to have oxygen tubes put directly into his lungs to help him breath (an oscillating ventilator I believe it is called) however Fairfax felt that due to Zach's other symptoms it was too risky for them to do it so they wanted to transfer him to CNMC downtown so Nathan just barely made it to Fairfax Hospital in time to watch them move him to CNMC via ambulance - sirens and all.  

The transfer took place around 1 am and was rough.  During the transfer his lung collapsed and they had to administer a pneumontheroax - a very serious and risky procedure where they stick his lung with little needle from the outside to blow it back up. He was able to make it to CNMC and there they were able to put in the ventilator and stablize his vitals by early morning and then spend the rest of the day trying to assess his situation.

Soon he had a chest tube put in to release air that has been leaking from his left lung into his body and causing an airsak to form and press against this left lung and heart.  His left lung is the main concern and if they can get the airsac out they are hoping it will reinflate and heal itself.  His vitals are good and he is still strong - in fact he is still fighting so hard to breath even though he does not need to since the ventilator is in - they need him to calm down and let the machine do the work.

Overall we feel that it has been a huge blessing that he is at Children's National.  It is a education hospital and he is the only full term baby there so he is surrounded by doctors, residents, and medical students who all want to learrn about him :).  Nathan is able to sit in on all the rotations/rounds and listen and learn - in fact he is recording them on his Iphone and emailing them to me.  We truely feel that the blessing prompted the doctors to take aggressive actions and get him in the right place.  It has been a blessing to have my mom here so she can take care of me and Nathan can go to the hospital. Then we have Nathan's sister so close to help with Addy.  We are well blessed.

I am recovering well now that I am staying in bed and expected to be release tomorrow (Monday 11-14-11) around noon so I can go see him.