Wednesday, October 7, 2009

Cana Lynn Milbrandt - Oct. 9, 2008 pt 1

I was awakened at 6:40 am to a visit from the attending OB.  You know, that fun "Oh you want to stick your hand into my uterus to make sure it's not smooshy" check up.  She comes in, rather abruptly, and as she does the vitals, she asks "is your baby in the nursery?"  "no. nicu."  She says nothing.  I have my very first experience with the "what say."  That's what i call them now.  The thought of "what do i tell her to not make her uncomfortable. what do i say right now?"  Then she says "I like your crucifix.  I thank her and then do the typical chris + 6:40 am thing.  "Are you Catholic?" I ask.  She nods.  "me too." I say.  (DUH!)  then i proceed to laugh at myself for a moment.
I fall back asleep for about and hour before breakfast comes in. I can't eat..much. We get up and slowly get ready to head down to NICU because they are doing rounds at 9 and we need to be there to hear what they are seeing, thinking, diagnosing.  I hate that i didn't sleep in NICU with her. I hate more that she didn't sleep in my bed with me.

 I remember there was this whole process of having to call first, talk to the nurse at our/her station, find out if there was any updates before we head down.  I still have the little piece of paper that mitch wrote the number down on.  It's interesting how we (humans) work.  Not having her here..means this tiny piece of paper is like gold to us.

We got down to NICU in time to see/hear the team talking about her.  About 6 interns/docs standing around her unit, speaking softly in terms we don't understand.  "mumble mumble MITRAL VALVE...mumble mumble VSD...mumble mumble TRISOMY 18."  Wait..that one we know!  We had both just been staring at our girl in her box, just feet away, but we were unable to get to her.   When we heard "looking like Trisomy 18, we'll know more in 24 hours." It was like we could each feel each others heart drop into our stomachs.  He looked into my eyes...and whispered..."wasn't expecting to hear that again." It was like we were running a marathon, and someone had put out trip wire.  We fell flat on our faces.   As soon as they dispersed, I ran to her side.  We talked for a moment, Cana and I. She was sleeping. I told her i missed her, was sorry i didn't stay with her longer in the night.  I held her hand.  Touched her feet, her head, her ears. She looked different in the morning.  As soon as they said T18, i could see it so clearly. Up until then, i just saw tiny features and crooked ears.  That was a rough moment.

We met the new nurse, Amber.

We left to get something in our stomachs, some coffee and a bagel.  We sent out a text with what we'd heard, and then offered that visitors were not welcome until further notice.  We ate outside of NICU and then headed back in.  Around the corner from NICU was the milk station. I wondered if I'd be able to pump and i wondered if I'd need to.  I had that thought 15 times in those 2 days we were there.  When we got to our girl, a Dr. Ivory and another nurse asked us to meet.  They had the results from Cana's heart echo from the night before.  We sat in a tiny office within the NICU.  Dr. Ivory started out by drawing a heart, and how it was supposed to work. I smiled. He noticed. I stopped him and pulled out the drawing/write up that Dr. Arne had given us in July at my first echo.  (I remember Dr. Ivory was very relieved.  He said later that that meeting with us could have been so much harder on HIM and he was proud of us and proud to know us and told us we were very brave and that if it was he and his wife having to go thru this, he thought they would live it the same way.  It felt so good to know the dr. who is overseeing your daughters a Christian.  We could see he was touched by our faith.  It strengthened us to know God would use us in this.)  As we looked at the paper together, Dr. Ivory confirmed everything Dr. Arne had drawn.  I had made it my mission to understand the workings of each abnormality as best i could and it seemed to help let go, to see that we'd given her every chance. There was no mention of T18 at this meeting.  The genetic testing would take awhile.

We stopped back by the computers on the way out, Dr. Ivory showed us Cana's echo, confirming what we'd seen back in July.  I asked Dr. Ivory if he knew/met the Cantrell's.  Charlie and Ali's Cate had been there just a few months before, but in the cardiac picu.  (i think.)  Dr. Ivory lit up.  He said "Cate!" I smiled.  Charlie and Ali's strength was before us as was their brokenness.  In their sacrifice and surrender, they taught us so much.  Dr. Ivory mentioned their blog, asked how they were. It was strengthening to have a connection to the Cantrell's thru Dr. Ivory. 

After this meeting, we stayed with Cana at her station in NICU.  I asked if I could hold her and Amber (our nurse) had to help because of all the stuff hooked up to our girl.  Mostly it was the line from her belly cord and the oxygen. I sat in a chair and held her for almost an hour, Mitch stood and watched as he only wanted that time to be mine.  I've never shared the video below.  it's one of my favorites, minus my singing. :)  It's the song i sing (or hum) to travis every night at bedtime.  I realized during pregnancy that when i would rock travis at night, it would probably be the only time i would have both travis and cana "on my lap" together.  So i couldn't think of anything else to do when i rocked her for the first...and last time.  Her oxygen levels would drop a lot during this time...because i would try to hold her closer or i would feel I was moving too much and the o2 would come out of her nose.  I panicked a lot, just trying to enjoy her but i was worried i was hurting her (suffocating).  She would cry out when the o2 would drop.

After that hour, we left NICU and found our friend Kelly.We took her in to meet Cana.  We didn't stay long.  During this time, I asked Mitch to text a few and let them know it was ok to come out to meet her.  Kelly came back to our room with us for a bit to rest and then my mom came out.  We filled her in and went back to NICU and we met Dr. Nelson.  He asked us to meet with him and Dr. Ivory about what our next move would be. So mom went in to see her granddaughter and we went to a meeting room outside of NICU. 
It's this meeting that i can hardly remember...i have huge holes in my story at this point.  I'll just share what i can recall.  We sat across from Dr. Ivory, Dr. Nelson and what i believe was like an HR person.  It was a big meeting table.  There was a phone, a big white dry erase board.  Not much else.  They told us their specialist was 99% sure it was T18.  But that the testing would take a few days.  There was no surgery that would save her.  They would do whatever we wanted. The technology was available to us but we already knew we wouldn't be putting her thru any.  We asked if we should wait for the genetic testing to come back before we made any decisions.  They said no.  They knew.  We asked what would happen next.  With comfort care, they said it was up to us when to turn everything off. They would give us a private room to have our time with her and I asked how long we would have with her after the machines turned off.  Dr. Nelson said prob. a few hours.  Maybe 3, but there was no way to know for sure.  I asked if she'd have any pain.  He said with comfort care, they would make sure she didn't.  (this meeting was much longer than i explain it here, but like i said, there is a lot i can't remember.)  Mitch and I asked for some time to talk about what we wanted.  They left us in the room. All i could think was "oh crap..people are coming up here to meet her.  We need OUR time with her.  We have to call everyone and tell them not to come out." I felt so bad.  We decided that whoever was there already, we would take them in to meet her...and we would call Fr. Bill Young, seeking wise counsel, to make sure we weren't giving up on her.  That just because the technology was available to us, didn't make it God's will for her, for us.  I went out to see who was there, and mitch called Fr. Bill and called those we thought may be coming out.  I walked out to see Patsi, Bethany and Derek and Elizabeth.  Patsi and Bethany are dear friends (mother/daughter), Derek is Cana's Godfather, and Elizabeth is my best friend.  My mom was still with Cana.
*mom told me later that Dr. Nelson went in, and told my mom that she must have done something right with me, because my faith was admirable.  Praise God.

We brought Patsi, Bethany, Derek and Elizabeth in to meet her and bless her if they wanted.  We explained what we would have to do.  Asked them to understand we would have to ask them to go so we could have our time with her.  Fr. Bill arrived within 20 minutes and we went in to see her. 

*i will post this today and leave the remainder of our journey WITH Cana for tomorrow..or later.  if you are still with us, thank you. I know this is a long story/read.  I'm honored if you are following along.


  1. Oh Chris...I just adore that video!! THANK YOU for sharing that intimate moment with the rest of us! To see your sweet baby girl in her mamas arms brought beautiful tears to my eyes! I am so deeply sorry that I wasn't able to meet Cana, please forgive me for that. I just remember that I was home with the kiddos and just couldn't get there...I hope you can understand that I so wanted to!!

    I will never forget when I couldn't get in touch with you but you had said that you were going to go hold her for what might be the last time. I kept texting Coco.."do we go..don't we go?? what do we do?" and she had decided to stay back and I just felt the Lord say "GO!" So I got in the car as soon as ben got home and when I was 1/2 way there, I got a call from Courtney saying that Mitch had just texted Jeremy and said that she had passed. My heart just about fell out of my chest and I whispered "okay" to coco and told her that I had decided to go and was 1/2 way there. I remember saying "do i still go ahead and go?" and she told me that she thinks the Lord put me in the car knowing how this would all go down and that I should go. I'll never forget that drive...MY SONG was on the radio when Coco was telling me..or rather, Moriahs song...HELD by Natalie grant...I said, "okay Lord..I'm going...please give them peace!"

    I then searched all over the world to find you guys. I laugh at my dorkiness when I got to the hospital trying to find you and told the nurse "I don't want to bother them..I just want to know where they are" so then she gets on the phone and calls your room and hands me the phone...I remember being like ..."hi girl..." and you asked me where i was and I said i am here but I don't want to bother you I just want to be near you and pray." and you were like "get in here"...

    Whether or not you truly didn't mind me being there, I am grateful that you let me in!! Thanks for letting me invade your space during that difficult time! Thanks for laughing with me at my dorkiness...and for "getting"me...

    Thanks for not being mad when I asked you if you had her on your hands and knees..haha...I was so glad when you said having her was soo easy and beautiful!

    For all the people who don't know what to say to someone when they are grieving...I have to say...please just let the person know that you are there..that you care. I remember when sweet Mary Clare Regitz went home to heaven and I was the only friend in our community who had lost a child in some capacity, and I was afraid to reach out. i was afraid that they would think that my reaching out was like me saying "i totally know what you are going through" b/c i didn't. Their daughter was 2 years old...mine was 7.5 months in utero...our experiences were TOTALLY DIFFERENT...and yet we had the bond of a mother losing her precious child. Or when Cate Cantrell passed away and we weren't able to be at the funeral b/c we were at camp and then headed to ohio, I felt like there wasn't anything that i could do and that reaching out they might think "you so don't know what we are going through" which again i would never ever say that I knew at all what it was like...but I do know the love a mother has for her child...and I pray that anyone who is reading this who just doesn't think they have the right words, or is afraid that you will think that they think they understand..I pray that God can give them the grace to know that in the midst of heartache and pain, we just are so blessed to KNOW that people remember..that they are thinking of our little ones...that no words other than WE LOVE YOU AND WE REMEMBER...or WE ARE THINKING OF YOU OR PRAYING FOR YOU...mean the world..b/c it is the act of reaching out in ANY CAPACITY that reminds us that we are part of the Body of Christ...

    Okay, now that I have rambled...I love you!!!!

  2. is that a teeny tiny pacifier?? too sweet!!

  3. I know it isn't easy to write these things out so I thank you for sharing Cana's story with us all. She is just so precious in the video. So small and so beautiful. You faced such hard moments and I think you did it with a lot of grace (although it may not have felt like it).

  4. I have so much to say, but just can't seem to get it started. Thanks for the video. She is precious and perfect. I'm so grateful that you are sharing your/her story right at this perfect time. God has truly knit us together in the strangest fashion. Thinking of you, and praying for you a lot in the next few days. I can't wait to see what the Lord has in store for the future for your family. I'm sure it's going to be amazing.

  5. ...more tears and smiles, but love reading. :)

  6. Precious, precious memories. Thank you SO MUCH for sharing, Chris. We're praying for you and Mitch and Travis today and sending our love as you remember Cana's Ressurection Day.

  7. Happy Birthday into the arms of Jesus, sweet Cana Lynn!! We love you and we miss you!!

    maria, ben, hannah, michaela, helena, and gem-de-la-creme!