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.