Day 4: A hope with the rising sun.

Hope waits by the light of the rising sun.  At least that's what I believe and this morning hope is was greeted me as my eyes opened.  That hope came in part, again, thanks to so many of you... the text messages to check in, the facebook instant messages of encouragement, the sharing of our story and the prayers that are tangible.  It was the hope you have given me to get out of bed, and go be with our fourth angel, our tiniest son.

Last night I went back to the hospital at 2 and spent almost 2 hours with Noah, celebrating another first, a bath.  Last night's "hand's on" time was pretty intense and overwhelming for me, I can't imagine how traumatic it was for all 1 pound 4 ounces of him.  In addition to getting his first bath, they also changed out his bedding, weighed him and replaced the leads on his chest.  Abby his nurse was very supportive and let me participate in a significant amount of the hands on time.  I was able to carefully wipe down his skin, his eyes, his nose and "wash" his hair.  As tiny as he is and as bruised as his poor head is from birth, he does have a pretty good amount of hair on his head.  Its light brown.
Noah seemed to enjoy his bath appearing relaxed. Abby had given him some medication to calm him down prior to beginning the 2 hour adventure of changing all of those items.

When it came time to change and move his bed, I decided it was best if I sat back, prayed and watched as a team of 3 (his nurse and two respiratory therapists- Bob and Tiffany) danced together in ways only the best teams can, to carefully shift him, replace all his blankets and rebuild his protective barriers.

Throughout this experience the lights were dimmed and Noah's batman mask was removed.  They continuously placed one of my scent clothes over his forehead to give him the scent, the impression he was still in the womb.  I pray my scent brings him comfort and he knows it is me.  That would bring me some comfort.

The NICU is a very special place to be in the early morning hours.  Some mornings it has been a quiet refuge, a tranquil place.  Last night it was very chaotic.  As we were bathing Noah a baby (full term) was brought to the bed just catty corner and across from Noah.  The team of professionals were talking and while I wasn't intending to overhear their conversation, the disruption was so significant it was hard not to.  The baby was brought to the NICU because of drug exposure and was having complications as a result.  After they got the baby settled a few minutes later, the mother was brought up along with her other baby (maybe 18 months).  The older child was not happy and proceeded to have a typical toddler tantrum in the middle of the pod.  It was clear the tiny babies in the NICU were greatly bothered by the noise.  Several alarms from different incubators went off which sent the nurses racing about trying to attend to the other babies needs.  Noah was greatly impacted by it also.  We've learned very early on, he does not like noise as it makes him stressed.  As the toddler continued to cry, I begged the mom in my mind to take her baby out.  Finally after several minutes of screaming, the older baby was carried out by another visitor.

There is a sign, a very clear sign, outside of the NICU that says visitors should be 12 or older.  That is one of the few reasons why Gabriel, Michael and Isabelle have yet to meet their newest sibling.  We have been told by the team that they would allow us to bring the kids into meet their brother, if they only stay a short amount of time, and are healthy.  Still we want to make sure they do not give any germs to Noah or the other babies in the unit, and so they remain patient in getting to meet their brother they are so in love with already.

This morning Jarrett, my mom and I went back up to the hospital and I hoped upon all hopes that today would be a better day for him.  When I got there, one of his all wonderful nurses Melanie was there.  My eyes met hers, she smiled and reading the look of worry on my face, she said, "Today's starting off to be a good day."    She went onto say they made the decision during the night to give him morphine to help him get better rest and to help him with pain.  She said, Angie, he has a breathing tube, a feeding tube, two tubes running from his belly button and 7 other sensors all on his tiny body.  He is probably having some pain so this will help him.  You know babies are so strong they are the only patient we often don't give pain medication to when they are intubated.  He will be so much more comfortable with the medication.

As I stepped up to the bed I immediately saw what the meant.  Noah was lying completely still and looked at great peace.  I hope this relaxation will help him gain back strength and some weight, even if it is  just an ounce.

As Mom and I were getting ready to leave after our morning visit, one of the lead neonatologists met me in the hallway. She greeting us warmly and asked us how he was doing.  I'm now very schooled in the art of not talking too positively about how things are doing, as we know the situation can change in a mater of seconds.  She asked if we had a few minutes to talk and shared that she wanted to show us a few things.  We said we'd love to talk.  For the next almost 25 minutes she went over how Noah is doing, what they are watching for, and what we face in the future.  She showed us his chest x-ray which showed us how his lungs are performing (the extra challenges he faces now because of my water breaking and him not having any fluid to drink), how his heat is and his tiny bones.  She explained things in terms I could understand and at the end of each scary statement she would share an indication of something she saw as a positive.  She said, "We are definitely not out of the woods yet with Noah, but I think I see the end of the tree line."  However confident she is, hearing that I wanted to reach across and embrace her with the biggest hug.  It was the hope I needed to again feel restored.

She then went onto tell us about his cbc blood results.  They have been monitoring a few things that are out of the normal range.  She showed us all of them and then showed us the test from today's work up.  She said, we are getting things under control and these are now within normal range.  It was encouraging.

After talking though with us all various different scenarios, she asked us if we had any other questions.  While I wanted to ask a medically intelligent, diagnosis based question, I opened my mouth and said, "Can I please give you a hug?'  She smiled, reached out and embraced me as if I was a long lost family member.  She embraced me for a good chunk of time and then said, I'll give you a hug anytime you need it, you don't have to ask.

Leaving the hospital this morning, I feel hope again.

I returned home, and this morning our house hold awoke as it has for the past three years.  Gabriel, Michael, and Isabelle were tucked in their beds, and Dad and I in our room.  I laid in the dark, unable to sleep and thought about how peaceful our house felt, but yet still a bit empty.  I feel the absence of our littlest angel and now it feels strange that one member of our family is not yet home.

Speaking of home, it is clear every member of our family feels the stress of this situation.  The kids seem to be doing remarkably well adjusting to the transition of turning their world upside down.  The kids obviously missed Dad and I and we missed them. I know my mind is preoccupied with what is happening 20 minutes away, but I try to be attentive to their needs.  The kids have been much more expressive in their emotions, in their actions and it is clear they need the embrace of a hug just as much as I did.  Michael especially.  He's given me more hugs and I love you's in the past 24 hours than I've received in weeks.  And the kids ask over and over how I feel, almost as if they can sense how I feel.  I tell them I feel good, and physically I do.  Emotionally, I fluctuate like a leaf blowing on an windy autumn afternoon.

The kids are also very concerned about their little brother, and have had him on their mind too.  Gabriel and Michael made the following signs for me to take to the NICU and hang next to the bed of their little brother.

 And they actively pray for his well being and strength.  This morning all three of the kids sat at the breakfast table eating their cereal.  Gabriel, the ever present fatherly figure to his sister and brother, had gotten Isabelle cereal, sat down next to Michael and her and said, "Now let's pray."  I stood at the sink washing the pump parts and cried softly as I attempted to pray along side them.   It is clear they love Noah as much as the rest of us.

Our morning routine continued as we have tried to keep the kids on a somewhat regular schedule.  As usual, we were running late so I was reminding the boys they needed to hurry up.  I went to leave my bedroom when all of a sudden Michael and Isabelle appeared in my mom.  Michael said, "Mom, you have to hear what Isabelle just said to me."  Michael then said, Isabelle, tell mom what you said.  She looked at me, smiled and said, "God bless Noah."

My heart melted, I bent down, hugged her, kissed her on the forehead and said, You're right Isabelle, God bless Noah James.

Hope indeed waits by the light of the rising sun.

Until next time,
Angie