Monday, October 26, 2009
As time goes by...
As time goes by, i find that i've thought more and more about the days after Cana's bday and resurrection day. What helped to focus so much on that time was my dear friend Nikki was sharing her journey as they prepared for and gave birth to their baby girl Johanna. Sweet girl lived for 63 minutes and i'm humbled to be walking with them as they journey forward in grief and celebration, sorrow and joy. I found my heart longs to be received as i reach out to walk with others on the same road we are on. It offers healing to not only my heart but theirs, i pray. It's my joy to carry the cross as others have shown us and walked with us. And it gives me comfort in my own pain, to know God can use us even in our brokenness,..if we LET Him. And that is when the joy returns. What a God we serve that gives us a taste of His grace and glory as we encourage the body of Christ, even when it's not so easy. It's never easy to approach suffering. But the gifts He gives us..the strength in the battle....it's all Him. I'm so proud of this family. Something i feel we need to hear often during this time. To give our bodies so completely to the Lord, and to have the life that grew within us..to have to hand that life back to the Lord, as He has asked...may seem impossible. But God makes all things new! And we get to witness that in faith...our girls have been made new. Nikki, i am so proud of you. I am so humbled to call you friend. I hope you can heal as we walk together....United in Christ.
Saturday, October 10, 2009
Celebrations
The past few days have been filled with more grace than I could have imagined. And while it's true what they say, the lead up and anticipation of the 1 year anniversary of the death of your child is worse than the day/s itself....i can only imagine how much harder these past few days would have been without all your prayers. We truly felt covered by all of you. I personally feel DIFFERENT today. I actually felt different as we drove away from the gravesite. It was like "ok. we got thru that year. It's time to look ahead now." That one year anniversary was just a huge black cloud..a black hole, if you will, which seemed to just suck the life and joy out of my days. I really do FEEL like i can walk a little lighter. I thank you all for carrying this burden and sorrow these last few days. I felt every single prayer, and every offering. I know the body of Christ spent some time at the gates of Heaven for us this week.
Oct. 8 - we went to The Aquarium Restaurant for lunch.
After lunch, we picked up cupcakes for cana's bday. And at 432pm, we sang happy birthday and let travis blow out the candle.
For dinner, we ordered Italiano's and shared some time with family at home. Elizabeth included, of course. Cause she's family.
Oct. 9 - I slept in, then mitch took a nap. We all woke up late from naps to rush around trying to get out of the house in the pouring rain, to be at the gravesite around 415/430 but I decided to have some spectacular morning sickness as we were getting ready...slowed us down to make our arrival there about 5pm. (sorry jamie!) We picked up some flowers, brought the cupcakes, towels, and some umbrellas. On the way there, the sun poked thru and God reminded us of His promise and covenant with a very quick and beautiful rainbow. Ah..that's just like God to do that! We really wanted to create the celebration mood and i think we did! My adopted parents, Jeanne & Duane, even came out in the rain. And, of course, Elizabeth, my crutch, was there too. She brought Cana some daisy's.
Then we came home and enjoyed some Arroz con Pollo, ala Grandma, and just vegged, enjoyed the time together, and honestly...felt a renewed joy...esp. since the first real cold front of the year rolled thru. Mitch and I opened the windows, watched some "HOUSE" and shared how neat it was that God gave us some nice cool weather on her resurrection day anniversary. He said "you know...i wait 365 days for this moment..and He gives it to us tonight." Timing.
Today, Oct. 10, was the MEND "walk to remember." We took travis and shared a quick walk, a really neat sharing by Nancy Guthrie, some praise and worship...and then they call your child's name/s and you are allowed to place the personalized ornament on a tree. Then we all head out to the parking lot for the balloon release. *we had coached travis on this all day....because he's deathly afraid of losing his "other" balloons (free balloons at the grocery store, etc) as we walk to the car, so i told him we were ALL going to let them go..up up up to Heaven, to celebrate Cana's bday. At first, he was pretty panicked, then I think he got it, and we really enjoyed watching him experience this. It was overwhelming to see them all. Pink for girls, Blue for boys, and white for miscarriages. Heartbreaking. But so beautiful to know all our babies are dancing with Jesus.
Oct. 8 - we went to The Aquarium Restaurant for lunch.
After lunch, we picked up cupcakes for cana's bday. And at 432pm, we sang happy birthday and let travis blow out the candle.
Oct. 9 - I slept in, then mitch took a nap. We all woke up late from naps to rush around trying to get out of the house in the pouring rain, to be at the gravesite around 415/430 but I decided to have some spectacular morning sickness as we were getting ready...slowed us down to make our arrival there about 5pm. (sorry jamie!) We picked up some flowers, brought the cupcakes, towels, and some umbrellas. On the way there, the sun poked thru and God reminded us of His promise and covenant with a very quick and beautiful rainbow. Ah..that's just like God to do that! We really wanted to create the celebration mood and i think we did! My adopted parents, Jeanne & Duane, even came out in the rain. And, of course, Elizabeth, my crutch, was there too. She brought Cana some daisy's.
Then we came home and enjoyed some Arroz con Pollo, ala Grandma, and just vegged, enjoyed the time together, and honestly...felt a renewed joy...esp. since the first real cold front of the year rolled thru. Mitch and I opened the windows, watched some "HOUSE" and shared how neat it was that God gave us some nice cool weather on her resurrection day anniversary. He said "you know...i wait 365 days for this moment..and He gives it to us tonight." Timing.
Today, Oct. 10, was the MEND "walk to remember." We took travis and shared a quick walk, a really neat sharing by Nancy Guthrie, some praise and worship...and then they call your child's name/s and you are allowed to place the personalized ornament on a tree. Then we all head out to the parking lot for the balloon release. *we had coached travis on this all day....because he's deathly afraid of losing his "other" balloons (free balloons at the grocery store, etc) as we walk to the car, so i told him we were ALL going to let them go..up up up to Heaven, to celebrate Cana's bday. At first, he was pretty panicked, then I think he got it, and we really enjoyed watching him experience this. It was overwhelming to see them all. Pink for girls, Blue for boys, and white for miscarriages. Heartbreaking. But so beautiful to know all our babies are dancing with Jesus.
Friday, October 9, 2009
Cana Lynn Milbrandt - the final hours
As soon as Fr. Bill Young arrived (previous pastor -St. Thomas More, current at St. Vincent De Paul - houston, tx), Mitch and I took him in to meet our girl. Fr. Bill blessed her first. And as we surrounded her nicu box, Fr. Bill held her feet, and studied her stats. He asked for all the details, which we spared none and we shared why we'd called him there, since she had already been baptized. We did as we knew to do...seek wise counsel. We knew in our hearts what God was asking of us..but we also needed the reassurance of someone wiser than us. I just remember Fr. Bill saying..."this is not what God wants for her life. This is not what He wants for YOUR life. You can let her go. You can feel no guilt about the right thing here. The technology is here to prolong her life, but what kind of life will that be. no...she can go home now. " Mitch let out a sob. I turned to him, pulled myself to his side. It was like he had been holding his breath the whole time, and as Fr. released us from our burdens of feeling like we were giving up on her, not fighting for her hard enough, Mitch could finally breathe. I saw the pain of what was to come as well as the relief of not having to watch her suffer any longer..all in that moment.
*mitch's baby sister, Melissa, died on his 14th birthday, of Leukemia. She was 12. I know the memory of her life and the memories that he missed getting with her was wrapped up in this pain. God gave the milbrandt family a little joy back when our first boy, Travis, was born ON Mitch's birthday, and Melissa's resurrection day, 19 years later.
We walked Fr. Bill out and met all those still waiting to say their goodbyes to us. We hugged everyone, told them we'd update them as the night went on. It was around 4pm, as best i can recall. My mom, mitch and i walked down, got some chickfila, and headed to our room to talk about the plan for the coming hours. Mitch made sure i was settled in the room and then told me he was going down to spend some time with Cana alone. I hadn't realized it, but up until that point, mitch still hadn't had ANY time alone with his daughter. That broke my heart. He left me with my mom, we ate. I asked her if she could understand, we needed to do this..just mitch and I. We didn't want other family in the room with us. We needed to let her go..together. just the two of us. She understood completely. Said she'd had a full hour alone with her, told her goodbye. I was grateful she was so supportive of our decision. I called my dad, and he was getting ready to head back out to see us. I told him no. He breathed a sigh of relief. My dad hates funerals, and hated that we had to have the memory of letting her go and all that would mean for us...and what it would look like. but he didn't want the memory himself. I free'd him of it. Told him I'd call him later with updates.
Around 620, i headed down to NICU. I walked my mom to the elevator, and walked myself, alone to do the inevitable. I remember time slowing down. I remember all the noise evaporating. I remember everything i saw, clearer, and at the same time, i remember nothing but the carpet beneath my feet. Alone in the hallway, my heart spoke to God's. I felt peace, i felt anxiety. I felt relief, i felt...fear. I felt alone. I felt His presence. I felt weak. I felt like i was floating the entire way there. I felt like I had cement cinder blocks around my ankles. I felt everything. But i felt nothing.
"God...i do NOT want to do this. I miss the "burden" of not wanting to go work out. I miss the burden of not wanting to get up early in mornings. I missed what i thought was the hard stuff in life. But this...this was unfathomable. To have to turn off a machine and watch my child, my baby, who not 2 days prior was safely within my belly, to watch her breathe her last breath. How was i going to DO THIS? I don't WANT this memory, Lord." Never before was i more in line with Christ and His cross. Never was it clearer to me, that i was suffering WITH Christ. I was right in the garden. I was sweating blood. I was begging God...if it be your will Lord, PLEASE let this cup pass before me. I CAN’T do this.....and He said "not without me, you can't."
I got to NICU, and held Mitch's hand and they began the process of moving us to the private room. it took a while, about 20 minutes. By now, it was around 6:50pm, just before shift change. Our nurse amber, took me to a room as they were getting Cana ready to be moved, and let me pick out a gown she could wear, that had been donated to NICU, so we could have the memory of seeing her in a dress. So we could take pictures of her. Also, while we were gone, they did a cast, a mold of her hands a feet. She still had some of the white casting clay on her hands, under her nails. They took us into the private room, and we turned off as many machines as we could without hurting her...we left her oxygen on as long as possible. We dressed her in the dress and took pictures. I've held back on posting those...and haven't shown hardly anyone in the family because to me, the Trisomy was fully noticable and she didn't look the same as the day before. Also, because i wasn't able to breastfeed her, the jaundice was really taking hold and she was very yellow. I don't see much of the life in her as i'd seen previously. So it's hard for me to look at these. But i wanted to assure you, all the pics you see here, every pic ever taken of her, she was alive in them all. And for that, i'm so grateful.
Amber asked us if we wanted her to stay. We didn't want to make her..she had a family of her own. Looking back, i wish we had let her stay. Since we opted for comfort care, they gave her some meds, and ....this is the hardest part,....this is when we feel she really left us. It all happened so fast. Mitch held her first, i took some pics. We were just talking to her, kissing her, praying the Our Father, and the Hail Mary. We had asked them to turn off the heart monitor so we didn't have to hear it flat line. They had it on outside the room. Amber left, we thought. About 5 minutes later, she came in...and said "it's happening faster than we'd imagined. She's going...." Mitch and I broke..."please...give her to me." Without a flinch, she was in my arms...
"cana. we love you. we love you so much. you. are. perfect. I'm sorry you didn't get to meet your big brother. pray for him. pray for all of us. You run to Jesus, baby girl. you RUN to Him. You don't have to stay here. We love you enough to send you home. I'm so glad you get to go. I'm so glad you stayed with us so long. I'm so grateful we got to meet you. You are so beautiful. You are so beautiful. "
I kept my fingers on her chest. I couldn't see it moving up and down, she wasn't breathing. but i could feel her heartbeat....every so often. After a while, she took one last gasp....and the heart beats stopped. It was around 740pm. A nurse came in, and apologized for interrupting. He said he needed to check her, that they were no longer getting a heart beat on the monitor. He put a stethescope on her and confirmed it was just more like "electrical firing" than beating. She was gone. He stood there for what felt like a full minute, just awkwardly waiting for...we don't know what...so i asked him "are you calling it? i need to know the official time." He said yes. It was 745.
We stayed with her for a bit. Sometimes i wish we'd stayed longer. Sometimes i am assured we stayed just the right amount. But we both felt holding her now was just...too hard. She was gone. God's mercy was present. God gave us everything we'd asked for. A full term pregnancy, a live and natural birth, great doctors, a baptism, wise counsel, an end to her suffering, a peace that we loved her right back to His arms.
*mitch's baby sister, Melissa, died on his 14th birthday, of Leukemia. She was 12. I know the memory of her life and the memories that he missed getting with her was wrapped up in this pain. God gave the milbrandt family a little joy back when our first boy, Travis, was born ON Mitch's birthday, and Melissa's resurrection day, 19 years later.
We walked Fr. Bill out and met all those still waiting to say their goodbyes to us. We hugged everyone, told them we'd update them as the night went on. It was around 4pm, as best i can recall. My mom, mitch and i walked down, got some chickfila, and headed to our room to talk about the plan for the coming hours. Mitch made sure i was settled in the room and then told me he was going down to spend some time with Cana alone. I hadn't realized it, but up until that point, mitch still hadn't had ANY time alone with his daughter. That broke my heart. He left me with my mom, we ate. I asked her if she could understand, we needed to do this..just mitch and I. We didn't want other family in the room with us. We needed to let her go..together. just the two of us. She understood completely. Said she'd had a full hour alone with her, told her goodbye. I was grateful she was so supportive of our decision. I called my dad, and he was getting ready to head back out to see us. I told him no. He breathed a sigh of relief. My dad hates funerals, and hated that we had to have the memory of letting her go and all that would mean for us...and what it would look like. but he didn't want the memory himself. I free'd him of it. Told him I'd call him later with updates.
Around 620, i headed down to NICU. I walked my mom to the elevator, and walked myself, alone to do the inevitable. I remember time slowing down. I remember all the noise evaporating. I remember everything i saw, clearer, and at the same time, i remember nothing but the carpet beneath my feet. Alone in the hallway, my heart spoke to God's. I felt peace, i felt anxiety. I felt relief, i felt...fear. I felt alone. I felt His presence. I felt weak. I felt like i was floating the entire way there. I felt like I had cement cinder blocks around my ankles. I felt everything. But i felt nothing.
"God...i do NOT want to do this. I miss the "burden" of not wanting to go work out. I miss the burden of not wanting to get up early in mornings. I missed what i thought was the hard stuff in life. But this...this was unfathomable. To have to turn off a machine and watch my child, my baby, who not 2 days prior was safely within my belly, to watch her breathe her last breath. How was i going to DO THIS? I don't WANT this memory, Lord." Never before was i more in line with Christ and His cross. Never was it clearer to me, that i was suffering WITH Christ. I was right in the garden. I was sweating blood. I was begging God...if it be your will Lord, PLEASE let this cup pass before me. I CAN’T do this.....and He said "not without me, you can't."
I got to NICU, and held Mitch's hand and they began the process of moving us to the private room. it took a while, about 20 minutes. By now, it was around 6:50pm, just before shift change. Our nurse amber, took me to a room as they were getting Cana ready to be moved, and let me pick out a gown she could wear, that had been donated to NICU, so we could have the memory of seeing her in a dress. So we could take pictures of her. Also, while we were gone, they did a cast, a mold of her hands a feet. She still had some of the white casting clay on her hands, under her nails. They took us into the private room, and we turned off as many machines as we could without hurting her...we left her oxygen on as long as possible. We dressed her in the dress and took pictures. I've held back on posting those...and haven't shown hardly anyone in the family because to me, the Trisomy was fully noticable and she didn't look the same as the day before. Also, because i wasn't able to breastfeed her, the jaundice was really taking hold and she was very yellow. I don't see much of the life in her as i'd seen previously. So it's hard for me to look at these. But i wanted to assure you, all the pics you see here, every pic ever taken of her, she was alive in them all. And for that, i'm so grateful.
Amber asked us if we wanted her to stay. We didn't want to make her..she had a family of her own. Looking back, i wish we had let her stay. Since we opted for comfort care, they gave her some meds, and ....this is the hardest part,....this is when we feel she really left us. It all happened so fast. Mitch held her first, i took some pics. We were just talking to her, kissing her, praying the Our Father, and the Hail Mary. We had asked them to turn off the heart monitor so we didn't have to hear it flat line. They had it on outside the room. Amber left, we thought. About 5 minutes later, she came in...and said "it's happening faster than we'd imagined. She's going...." Mitch and I broke..."please...give her to me." Without a flinch, she was in my arms...
"cana. we love you. we love you so much. you. are. perfect. I'm sorry you didn't get to meet your big brother. pray for him. pray for all of us. You run to Jesus, baby girl. you RUN to Him. You don't have to stay here. We love you enough to send you home. I'm so glad you get to go. I'm so glad you stayed with us so long. I'm so grateful we got to meet you. You are so beautiful. You are so beautiful. "
I kept my fingers on her chest. I couldn't see it moving up and down, she wasn't breathing. but i could feel her heartbeat....every so often. After a while, she took one last gasp....and the heart beats stopped. It was around 740pm. A nurse came in, and apologized for interrupting. He said he needed to check her, that they were no longer getting a heart beat on the monitor. He put a stethescope on her and confirmed it was just more like "electrical firing" than beating. She was gone. He stood there for what felt like a full minute, just awkwardly waiting for...we don't know what...so i asked him "are you calling it? i need to know the official time." He said yes. It was 745.
We stayed with her for a bit. Sometimes i wish we'd stayed longer. Sometimes i am assured we stayed just the right amount. But we both felt holding her now was just...too hard. She was gone. God's mercy was present. God gave us everything we'd asked for. A full term pregnancy, a live and natural birth, great doctors, a baptism, wise counsel, an end to her suffering, a peace that we loved her right back to His arms.
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 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.
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.
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 life..is 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 me.....to 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.
Sunday, October 4, 2009
I'll try..tomorrow.
Before I try to post my promised (and i'm sure much anticipated) :)Oct. 9th - Cana's Resurrection Day retelling....i just wanted to let you know
I'm doing...better. I am still offering up my sad moments in faith and for Cana's little bro/sis in my tummy. And for all unborn babies..and especially all moms with fatal diagnosis pregnancies.
But today, i share that today is PRO-LIFE sunday in my faith and Oct. is Respect Life month. I LOVE that my Cana was born in October. I love that i have my entire faith community listening to homilies and gospel readings on how we recognize life IS life from conception to natural death. For us, that gap was too close for comfort. The conception to natural death for Cana was less than 10 months. It was just 37 weeks. But what an amazing 37 weeks. It was hard not to think just all about her today. And as I stood outside for just an hour at 230 this afternoon with about (wow, i'm terrible at judging crowds...and distances, just an fyi)...i'd say about 75?...well, as we stood and heard mostly honks of encouragement and just a couple reminders of the enemy, i would say i felt overjoyed to stand there, knowing what i know today..knowing i gave her every chance to live. That she gives me my purpose to live every pregnancy just the same way. Knowing I wouldn't trade her Heaven for my missing...Knowing my merciful Lord and His hand in my life. and on my heart. and in my sorrow.
We are hoping to celebrate both her earthly birthday and her resurrection day differently. We are hoping to create memories that will bring us joy..as we watch travis enJOY his little sister's first birthdays.
enduring the cross. embracing it as best i can today. And i remember always...suffering + obedience = glory.
I'm doing...better. I am still offering up my sad moments in faith and for Cana's little bro/sis in my tummy. And for all unborn babies..and especially all moms with fatal diagnosis pregnancies.
But today, i share that today is PRO-LIFE sunday in my faith and Oct. is Respect Life month. I LOVE that my Cana was born in October. I love that i have my entire faith community listening to homilies and gospel readings on how we recognize life IS life from conception to natural death. For us, that gap was too close for comfort. The conception to natural death for Cana was less than 10 months. It was just 37 weeks. But what an amazing 37 weeks. It was hard not to think just all about her today. And as I stood outside for just an hour at 230 this afternoon with about (wow, i'm terrible at judging crowds...and distances, just an fyi)...i'd say about 75?...well, as we stood and heard mostly honks of encouragement and just a couple reminders of the enemy, i would say i felt overjoyed to stand there, knowing what i know today..knowing i gave her every chance to live. That she gives me my purpose to live every pregnancy just the same way. Knowing I wouldn't trade her Heaven for my missing...Knowing my merciful Lord and His hand in my life. and on my heart. and in my sorrow.
We are hoping to celebrate both her earthly birthday and her resurrection day differently. We are hoping to create memories that will bring us joy..as we watch travis enJOY his little sister's first birthdays.
enduring the cross. embracing it as best i can today. And i remember always...suffering + obedience = glory.
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