Day 7: Its scary, its overwhelming, its painful.

A week ago tonight at this exact time, I was lying in the labor and delivery room in active labor.  Less than an hour from now Noah will celebrate another milestone, he has made it through his first 7 days.  He is now officially a week old.  Tonight I type this update from Pod 50 in the NICU, right next to Noah's bed.

The scary thing though is that earlier tonight, I feared he wouldn't make this milestone.  It has been a very scary evening and the most stressful night by a long shot.  Throughout my visits today I had been noticing that Noah's vital signs weren't as good as they have been in the past days.  While his heart rate looked good, his CO2 counts as well as his oxygen seemed off.  Each and every time I visited today Noah's vitals went into desat.  This means his oxygen levels plummeted down below the range they find acceptable.  His oxygen levels are to remain between 75 and 93 and today they were often well below that.  In fact when Jarrett was here for morning care this am, Noah desat into the lower 40's.  Very scary.

But I had hope today would be a good day like yesterday so I tried to push the out of the ordinary vital numbers out of my head.  Today was a big day for Noah in that they decided to do the ultrasound scan on his head to check for brain bleeds.  I was very nervous about this because we had been told the statistics on a baby the age of Noah having a brain bleed can be pretty great.  I was worried, and asked several family and friends to pray specifically for good news on this front.

This afternoon I couldn't get to the hospital fast enough to get the results.  The minute I walked in, I asked Noah's nurse if the results were back and she said yes.  She said the scan came back normal, meaning there are no brain bleeds.  This is HUGE news as the risk for brain bleeds are greatest within the first 72 hours of birth.  We feel like this is a huge victory to celebrate.

The other news we received this am during our visit to the hospital was that in the morning blood labs that were taken, indicated Noah's blood level (red blood cells) were low.  The doctor said it was time to give Noah blood.  In talking with his doctors, I learned that Noah only has the equivalent of 2 teaspoons of blood in his body.  Two teaspoons... doesn't that seem like a tiny amount?  I guess that's another indication of just how tiny he is.  This afternoon Noah received a blood transfusion which they hope will help him in many respects, including his acid/ph counts.  Right now he is tending to be a bit on the acid side as he's been peeing out so much he's loosing his PH in the urine.  The blood they gave him actually made him appear red tonight, think being extremely flushed.  They said it's common and its because his skin is still so transparent.  We pray the blood will help him.

Tonight when I arrived at the hospital, the minute I walked up to his bed, I saw that he had been in desat again.  His oxygen levels were again low and I sat back watching his nurse by his bedside.  She was working on hanging the lines (adding the IV's) and because it is a sterile procedure, I had to stay back behind the line.  As she changed the IV's I watched as Noah's vitals fell again.

And not only did they fall a little bit, they fell significantly.  Jarrett wasn't at the hospital yet, but as I saw one sign after another sign of Noah struggling, I texted him.  Jarrett and Michael were having a dad/son bonding night with Nana at the D-Backs game.  I watched for over an hour as Noah's nurse tried to "bring him back"  She turned up his oxygen, she sucked out his tube, she gave him some calming medicine... nothing was working and in fact his vitals continued to drop.  I texted Jarrett, "I think you need to leave the game and come to the hospital right now" These days we understand the seriousness of our texts, to which Jarrett replied back, "Leaving now"

While Jarrett, Nana and Michael made their way to the hospital, I watched in agony as my precious baby continued to go down and down.  Before long they had turned up the oscillator to the highest settings... and it still wasn't helping his vitals.  I prayed over and over again and begged God, "DO NOT TAKE HIM AWAY FROM ME, PLEASE!"  As nervous as I was, I could tell the nurse and his respiratory therapist were doing everything they could.  They were trying and nothing was working.  Soon they were each on their call buttons asking for Noah's Nurse practitioner as well as his lead doctor.  Soon there was a swarm of people at Noah's bedside, it was clear he was not stable and they were now just as concerned as me, the mom sitting in a chair feeling helpless.

The team raced around, trying to suction him out, trying to get his nice vibration of his chest back.  It was scary to look at him because when I'd look there was no jiggle, no movement, nothing.  Again I begged God, "PLEASE DO NOT TAKE HIM FROM ME.  PLEASE HELP HIM!"

Within seconds of looking at him, his doctor ordered an X-ray to see if his breathing tube had been bumped or was lodged too far down or not far enough in his lungs.  I'm not sure where the x-ray guy came from, but he was here within a minute, setting up to take the x-ray.  After the x-ray was taken, Andi, his nurse practitioner followed the x-ray tech out to get the results immediately.  Meanwhile Noah's alarm continued to sound, for 1 hour and 43 minutes his alarm went off.  I bowed my head and tried to pray as I told myself to put the noise out of my head.  I found myself being so stressed, that I passed my threshold and could barely keep myself awake.  I laid my head on Jarrett's shoulder, closed my eyes and begged God to make it stop.

For any parent in the NICU, I think watching your babies vital statistics drop, is one of the most challenging and difficult things about being in the NICU.  While I try to remember what the doctors have told me, (Let us focus on the numbers, you focus on Noah), it can be very hard to not focus on every beep of the machine telling you that your baby's vitals are not right.  This is especially hard on Jarrett.  It is the one thing he focuses on every time we come to visit.  I can tell how stressed it makes him and it is clear to the staff we are both stressed.  I think as a Dad, this is especially hard on Jarrett because he sees one of his roles as the protector.  Sadly, in this situation there is nothing he or I can do to protect Noah from what he is going through.  The team of care providers for Noah are very responsive to our needs, constantly asking us what questions we have and explaining everything that is happening.  While they tell us, they know only about 2 percent of the information shared stays with us.  Tonight, Jarrett was visually upset with the constant desat's we watched our precious baby have.  It was the most stressful, exhausting and helpless feeling I've ever had.  Jarrett sat in his chair, watching the monitor, willing it, Noah, to bring it back up.  He'd go from sitting to standing, to pacing to standing still.  Dr. Hamburg came up to Jarrett and said, "Dad I know this is very difficult and if I asked you to stand on your head for the next several hours, to help make Noah better, you would absolutely do it right?"  The hard part about this is there is nothing you can do.  You have to trust us and know we are carefully monitoring your little guy and we will do everything we can for him.

After Andi returned with the results of the x-ray she ordered the Respiratory therapists to pull his breathing tube out a bit.  She said it was shoved pretty far down in his lungs, which I guess can happen from movement in the incubator as well as from when they turn him during care time. The other thing she shared was that his upper right ventricle (or what ever its called) of his lung collapsed.  This is why his vitals were crashing and that they couldn't get him to recover.     As the two respiratory techs worked on him, Jarrett and I held hands and prayed.  After they were finished the team of doctors came back and talked to us.  She suggested we not leave the hospital as Noah was not stable.

We watched for another hour as they continued to work on him.  And despite their best efforts he just didn't seem to come back around like they/we wanted.  Dr. Hamburg looked at him again and suggested Jarrett and I take a walk down the hall to give them some time to work... I think it was a cover for, "Mom and Dad, you need a break... this stress isn't good for  you either."

In taking a walk we decided I was going to run home to get my milk generating materials.  It has been several hours and it was time.  I told Jarrett to text me updates on how he was.  As I walked out of the ER entrance my phone battery died.  It just added another mountain of stress on my shoulders As I raced home, I asked God to please watch over Noah and to give Jarrett and I the strength to handle those situations.  I raced home, grabbed my things and was back to the hospital in less than 25 minutes.

As I got back I found that Dr. Hamburg had worked on Noah, adjusted his tube, suctioned him out and adjusted his oscillator settings.  Walking in the room she shared that they had done a second x-ray to check positioning and found that the part of his lung that had collapse, was actually re-inflating.  It was a huge victory and just what we wanted to hear.

After all that, including an extra shot of morphine to keep him even more sedated, we started to see Noah's vitals slowly inch up....slowly.

Sitting here at his bedside for the past 6 hours, I can honestly say I was scared I was never going to get to hold my son, or see him grow.  It was terrifying and I pray we never have to go through that again.  As good of a day yesterday was, maybe I should have expected a rough day to follow.  Driving back to the hospital, I went from crying uncontrollably, to telling myself to pull it together for him.  I looked up into the starry night sky and said, "God, I'm trusting you with this, please help me through."

Sitting here right now, my baby is sleeping peacefully and his counts have slowly returned to normal ranges.  I am thankful he is still here with us... thank you God for still keeping him here with us.

A week ago right this minute, I was dilated, and ready with my entire might to bring Noah into this world.  It was scary, it was overwhelming and painful and at the same time, it was the most amazing experience of my life.  I never thought I would be able to give life, and somehow my body did just that. Watching Noah come into this world, and hearing him give us a tiny cry, was life changing.  I loved this baby from the instant we learned of him and seeing him come into this world full of life was something I will never forget.

Thinking back to all that we've been through this week, it was scary, it was overwhelming and some days even painful.  And yet, here we sit tonight, celebrating the fact that our son made it through his first week of life.  As scary, as overwhelming and as painful as it was, I would never trade this week for anything.  Jarrett and I, Gabriel, Michael and Isabelle love their baby brother (our third son) more than anything in the world, and we pray for more days together.

Now, at 1:29 a.m. on Saturday, June 20th, we celebrate you Noah.  Happy first week of life.  You've done such a good job fighting to stay with us.  I know its scary, its overwhelming and what you've been through is painful honey, but you keep up that fighting spirit.  Because we want to celebrate so many more firsts with you... your first time cuddling with Mommy and Daddy, your first pound weight gain, your first month, your first day at home, and your first of everything in the years to come.

We love you our sweet baby more than you will ever know.  Please stay with us.

Until next time,
Angie