Day 8: The lesson in this journey...

Last night Jarrett and I stayed at the hospital until 3 a.m. watching, hoping and willing with all our might that Noah would become and remain stable.  As I said before, it has been the hardest part of our journey thus far.   The nurses and doctors here could see the stress and worry on our face, in our body language, in everything we did.  They offered us a nesting room to stay overnight and we debating staying but in the end decided to go home.  Noah's nurse said to call her as soon as we got home, and then to call her when ever I wanted.  When we got home I called and she said he was going okay and that we should get some sleep.

I crawled into bed, pulled the covers up over my head and collapsed into my pillow with my cell phone clutched in my hand.  I woke up this morning with my hand still cramped around my phone.  I called at 5 a.m. to check on him and was told his oxygen needs again went up but that they were still holding him stable.

I finally managed to get out of bed, the exhaustion is now fully set in, at 7 in time to quickly shower and race to Michael's swim meet.  Gabriel, Michael and Isabelle have been having all sorts of activities going on and I have not attended a single one since Noah was born.  While the kids are doing okay, the stress is really starting to impact them and we've noticed it clearly with Michael.  In talking with my mom, my aunt and Jarrett's mom, they all suggested maybe we do something individually with him to give him a bit more reassurance, things are going to be okay.  What that "okay" looks like, I have no idea and it is scary, but its going to be okay.  While my heart was pulling me to race off to the hospital again this morning, I knew my other son needed some support and it was time he got it from me.

I showered and raced off to the pool, only to arrive just a few minutes after his first race.  He came up to me, gave me a hug and said, "I love you mom"  and I told him he had done a great job.  He smiled, asked me how Noah was and said, I love you mom again"  For a boy who doesn't show a lot of emotion, he's full of it now, and I can tell this experience is fully impacting us all.  I stayed to watch the rest of his races and couldn't help but notice, all the other parents and families around.  They all were fully present at the pool cheering on their children.  I couldn't help but wish I was one of them, living in a world where all was right and normal.

In between Michael's races, I ran quickly to the grocery story to grab a few things Jarrett and I needed at the hospital.  It was the first time and it was another one of those facing the reality of where our lives had been compared to where they are now.  I raced through the store, picking up the necessities I had come into get, but couldn't help and notice the mothers with their sons, the dad's with their daughters and the families carrying on about their normal life.  It took everything in me not to cry, as I wished so desperately to be one of those families doing their normal shopping, with Noah still inside me. At the check out the clerk asked me how I was and for a second I thought about pouring every emotion inside me out onto her, but I swallowed hard, looked her in the eye and said, "I'm okay."  I left the store as quickly as I could and raced back to watch Michael.

After I arrived back, Jarrett and Gabriel came to watch along with Nana who had taken him bright and early.  Michael seemed so proud to have us there, walking along the pool deck with a big smile and a wave to us as he went to get lined up.  For those few steps, I saw in his eye, life seemed okay again.  Michael did a great job today finishing third twice and second twice.  It was the break we needed and I think the support he needed to be reminded "its all going to be okay."

As the swim meet was wrapping up, the hospital called my phone, it was Noah's doctor Camilla.  The first thing she said was, "Angela, this isn't an emergency."  She then went on to explain that after Noah's difficult night, they were reevaluating him and determined they'd like to put him on a new ventilator.  Instead of the oscillator, they are putting him on a Bunnell Jet high frequency ventilator.  Where his previous ventilator pushed air in and out of his lungs this new ventilator only pushes air in and then lets his body push the air out.  It is a gentle system that gently pushes more than 400 puffs of air into his lungs.  Noah is having some trouble with his lungs functioning properly.  Currently there are sections of his lungs that are deflated and that's causing oxygen issues, as well as some part of his lungs that are over-inflated, causing pain and his vitals to changes as a result.  They have increased his morphine and  are keeping him sedated.    Camilla called to inform us of this change and ask us to come to the hospital so they could explain more in person.

Jarrett and I said goodbye to the boys again and left them in the wonderful hands of Nana.  While Isabelle was with my mom and Marjory.  Our family has been so supportive, we don't know how we would have gotten through these last two weeks without them.  Together Jarrett and I raced back to the hospital.  This time our drive was quiet, I think we only exchanged a few words.  Both of us are pretty much emotionally taxed and while few words were spoken, we both knew exactly what the other is feeling.

We arrived at the hospital this time bringing some supplies to be here for the entire day and possible night.  Within minutes of arrival Noah's team of doctors, respiratory therapists and nurse was at our side.  They went into detail about where he was as of this morning and the challenges he is facing.  They remain fully committed to giving Noah everything he needs.  They provide reassurance and remind us that we are on an hour by hour, minute by minute timeline.  Jarrett remains pretty quiet while they talk, I can tell it really bothers him to hear difficult updates.  I try to provide support to him as thus far he's been the rock for me.  I tell him its okay if we take breaks and if he needs to go for a walk to get away from the alarming machines.  I listen carefully to what the doctors are telling us and ask as many questions as I can.  I forget half of the updates they share but hold onto any positive piece of news that is included in their updates.

As of the last 5 hours Noah has been at 100% oxygen, definitely NOT where we want him to be. They have been unable to wean him down to a lower level (we want to be around 23%), where he was about 28 hours ago.  In trying to look at the glass half full, he remains within his "range" with the oxygen at 100%.  Last night he continued to desent even with the oxygen at 100%.

Right now we wait for the results of the most recent chest x-ray and have learned they are going to adjust his breathing tube again.  We trust what the doctors are saying and just pray this latest adjustment is just what he needs to find Noah's happy spot.

Just a bit ago Jarrett and I decided to go together to grab some lunch in the hospital cafeteria.  We don't really feel like eating, but know we have to eat too.  Sitting down at the table, we prayed, looked down at our food and attempted to eat.  Just like in the car, few words were spoken but in looking at each other the tears flowed together.  In between the moments of weakness, I said to Jarrett, "I'm trying to see the lesson we are suppose to learn in this. I don't understand why we have to go through this?"  Jarrett reminded me we can't ask why, we must only trust.  He struggled to say "Its only after events are in the past that we can see the lesson to be learned."  I pray someday in the future, we look back with a healthy, active and feisty little boy, and say, "I see now why we went through that."

Jarrett and I finished our tear filled lunch and I told him I felt we needed to get back up to his pod as soon as possible.  We returned to find his oxygen levels slightly above his range, so we are happy to see at least its going in a good direction.  Just now the respiratory therapist, Becky came to retape Noah's tube.  They decided today to push it back in a teeny tiny bit.  Becky invited me to stand over her shoulder and watch.  Jarrett decided to leave.  Becky said its usually the moms who stay.  As Becky and Megan the nurse retaped Noah's face they let me take a picture of him before they reapplied the tape.  It was the first time getting to see his entire face,  Thank you God for giving me another first, something I prayed for last night and this morning.

This day has been yet another difficult day.  I know we are worn down and more emotional just because of the challenges from last night.  I think, while we trust God and his plan, we waiver between moments of great hope and moments of fear.  Today fear seeps in while we try to push it away.  In feeling so helpless, but yet such great love and desire to watch our baby boy grow and become a part of our family, Jarrett and I struggle with the fear of the worst case scenario.

And in the middle of that fear, we find again God winking at us.  In the pod next to Noah, there is a precious baby girl.  She is just over 3 pounds and seems to be thriving.  Yesterday I got to see the nurses hold her up during cares and she is so beautiful.  I think of her family and pray for them, along with all the other families here living in our new reality together.  I wonder about each of their stories and my heart hurts with them as we now know what the alarms mean.  The precious little girls Mom and brother were here with us last night as Noah was having all the desents and challenges.   While their family was celebrating her having a good day, we were in the middle of, well I think it is clear.

Moments ago, Jarrett and I sat facing one another, again having a moment of weakness, when around the curtain appeared the little baby girls mom.  She introduced herself as Veronica and reached out her hand.  She said, last night when you were here I wanted to come and talk with you but I know it was a challenging time.  She continued, "I am a woman of faith and I'm not sure if you are, but I wanted to let you know, last night when I was here with my daughter, I felt the Lord speak to me.  He wanted me to tell you that your son is going to be okay."  Tears filled my eyes, and I couldn't speak but grabbed her hand and nodded my head to say thank you.  My heart filled again with hope and trust that he's here guiding this whole plan.

Until next time,
Angie