Wednesday, July 29, 2009

couldn't wait...

Those of you who are following my retelling of our journey with Cana,
I just couldn't wait to share some pics of her time with us.

we miss her.

Tuesday, July 28, 2009

Cana Lynn Milbrandt : From 22 weeks to 26 weeks

On July 16th, 2008, one day before my 32nd birthday, Mitch and I traveled south to Houston's Medical Center (about 30 min drive for us) for our appt with the high level ultrasound with Dr. Johnson. At the time, i did not know that this drs. office tends to not only high risk pregnancies so i was unaware that there would be other women in the waiting room with healthy babies. I thought that every look from them was a "knowing" look. It wasn't. I guess i was already searching for connection and support.

The ultrasound lasted about an hour. They had a monitor on the wall in front of us so we could watch in color with them as they scanned and searched, whispered and stared.

After about an hour, Dr. Johnson went thru all the images they'd collected and showed us all the abnormalities and concerns. He started out by saying "whatever you decide, we're with you to the end." I knew he meant "continuing the pregnancy." We would have many many more appts with Dr. Johnson.

He started out by saying that Cana's heart chambers were messed up. He explained that for certain one chamber was opening to another and the blood just had no direction and was going "all over the place in there." We would have to go to the fetal echo doc to get the whole picture. But it didn't look good. Then he said she only had one working kidney and most likely the other one would be absorbed back into her body. But we can "work" with one kidney. Unfortunately, this issue only pointed to lots of other things...He said her brain was forming irregularly. Too small for her gestational age (3 weeks too small) and it was oblong for no reason. And we had single artery umbilical chord.

When we got home, i immediately wrote an email to all those following our journey and felt a ton of peace. I spent a lot of time back then in worship. I mean, what else was there to do? We just wanted to live in humble obedience and joyful suffering.

2 weeks later:
August 6, 2008, We had our ECHO at texas children's fetal center in the medical center.
Dr. Arni took us into the very small room and asked us to please not talk to him during the ultrasound. I half jokingly asked if it was ok for Mitch and i to talk to each other. He said yes but didn't smile. After an hour of awkward silence and mitch and I trying not to "church laugh" (you know, when you aren't supposed to laugh so it makes wanting to laugh that much you laugh thru your nose, and giggle...and speaking of which, i kept jiggling the equipment so the tech kept pausing..i really got the "holy spirit" giggles that day). ahem..ok back to the story...
Dr. Nutting asked us to come into his office. We felt prepared.

When we sat down, he began drawing on a photocopy of a healthy heart. Red ink for oxygenated blood, blue for non. Then he began listing and listing and listing...
(click images to see enlarged)

Double Outlet RV • Normally related great arteries • Large Conoventricular VSD w/ inlet extension • Dysplastic Pulmonary Valve • Hypoplastic Aortic Arch

Then he flipped the paper over and began drawing what Cana's heart looked like. Two of her valves (DORV) were stacked on top of each other. The arch was closed off, not sending any blood to the lungs. Her heart just kept recycling it's blood back into itself. There were holes in between all her chambers. It was very VERY medical. But he was kind. It was just hard to understand the heart when it's on a piece of paper. AND it's YOUR daughter's heart. and her life. I asked if he'd ever seen this before. He said "No." He said he had seen these abnormalities on several hearts..but NEVER had he seen ONE heart have all of them. I asked if it was operable. He said they would go in with a plan. The plan: After she was born, she was be taken immediately to Texas Children's NICU to administer the PGE (prostaglandin) which would tell her heart to keep beating outside of the womb. (see PDA-patent ductus arteriosus) Then they would do an ECHO for her and see if the heart had changed. Pending no change, her first surgery would be at 3 days to keep the PDA open and open up her hypoplastic aortic arch (to get oxygenated blood to her lungs). However, if the ECHO showed that the DORV (double outlet right ventricle) had not changed...she would be inoperable.

I asked if I could deliver her natural with such extensive heart problems. Dr. Arni said he thought it best if we leave the option for Csec open...But if we had her natural, i could get to the NICU and by her side in 2 hours. If we had a csec, it could be as long as 12 hours. And no, i couldn't hold her before they took her there. Out of all that news, that was what hurt my heart...that i would lose the option to meet her before she left..and maybe even before she dies.

I remember sitting there, feeling pretty strong..but almost forgetting entirely that Mitch was there too. I still feel badly about that. We were holding hands, that much i remember. The rest was just trying to understand the medical jargon. Then we walked out, got in the elevator and was greeted by a cheery mom who asked if this was our first. We shared we had travis, 14 months, at home. "awww..and is this a girl or a boy?" she asked. "a girl." " get one of each." yes. yes we did. Because no matter what we faced in the matter what was to come....God had already given us one of each. Cana already counted.

Friday, July 24, 2009

Cana Lynn Milbrandt : From 15 weeks to 22 weeks

After the last appt showed her heart rate @ 163, Dr. Laden recommended we make an appt with a fetal specialist at the medical center and also schedule an echo-cardiogram. (i've seen this EKO and ECHO---we'll stick with ECHO for the remainder of her story.) I was almost 16 weeks along when i got a call to schedule the echo but when i asked if i could hold off a month because the appt was going to be intensive and long and we'd need babysitting all day for Travis, they told me no problem. We would call back at the end of June when my grandma, Travis' Lola would be here. (this is Lola with Travis on his bday-May '07)

In between appts w/ Dr. Laden showed no changes, heart beat was always good. Growth was always behind. She showed to be around 17%. Arms and legs were short. Looked to be a kidney issue. But heart seemed to be pumping well.

So when we knew Lola's arrival date, (early july) I called to schedule the echo and specialist ultrasound. And this is where i was faced with the world's view on my baby girl for the first time. Even now, as i type this...almost 1 year to the still makes my heart sink, my stomach flip flop.

I spoke with a woman at the Baylor Clinic (obstetrics and gyn) and she was the coordinator for that office/specialist who would perform the high end ultrasound. I had to go to a different office for the echo. It was a bit confusing because I had to coordinate the appts and try to make them the same day for the drive and parking fees. It went like this:

me: Hi, my name is Christina. I was told to call you to schedule an appt for an ultrasound, referred by Dr.Laden in the woodlands.

she: ~ is pleasant, goes to get my file..when she returns
she says : can i help you?

me: well, i was just told to call you to schedule this. I'm......not quite sure what you mean.

she:well, you are 22 weeks, right? I mean, why didn't you do this last month? You called us a month ago, that would have put you at 15-16 weeks. You know abortions aren't legal in Texas after 22 weeks, right?

me: *stunned silence

she: *she's starting to sound irritated with my "irresponsibility" and says "you know, you are showing signs of Trisomy 13 or 18 and those babies don't live outside the womb. If you proceed with this pregnancy, you are going to have to have a c-section. do you REALLY want to be cut open for a baby that isn't going to live?"

me: Can i please make my appt for the ultrasound? i was told there was no problem for me to schedule this at this time in my pregnancy.

her: *exasperated..."sigh...okaaay."

When i hung up with her, i cried. I cried for my hurt. I cried for the realization that it was going to be us against the world. WE would be her advocates. WE would FIGHT for her life. And we could fight FOR her..and AGAINST the world.

I remember kind of laughing at satan.."oh you are going to have to work harder than this, little man. You are going to have to work a lot harder to defeat me..."

But i DID feel defeated. and alone. And sad. so sad that other women had chosen that option. How could we give up the best 9 months and the best 27 hours God gave us in our daughter's life?

Tuesday, July 21, 2009

Cana Lynn Milbrandt : From 13 weeks to 15 weeks

It seemed like every appointment offered a different hope along with a different concern. At the 13 week appt, Dr. Laden requested that I return weekly to make sure i wasn't starting to miscarry. I remember that appt was a thursday and that friday night, i went up to the youth center (i was still working as a youth minister at the time and really loved being around the teens to remind me how much God was asking us to show them His glory thru us) and i told mitch before i left the house, i was spotting. We both thought, well..this might be it. And we were thankful for the mercy if that was His will. See, i stupidly went home after that appt and did the internet research. WORST thing i ever did. sort of. You want to be informed, but you don't want to be scared out of your mind that your baby is going to be deformed and you won't be able to be strong enough to look at her's a horrid thought. But we are human. And i want to be honest with you all, in hopes that i will offer you the consolation that you aren't horrible if you've thought it, too. So when we thought i was losing her, we were a bit relieved.

It turned out it was nothing. I had placenta previa (partial) with Travis so we had our fair share of scares that go 'round. When the spotting was gone by bedtime, we just watched and took it easy and waited for the next appt. That appt was the beginning of the "good news, bad news" journey. Dr. Laden said the fluid sacs around her neck (cystic hygromas) were almost gone and that could point to a heart condition instead of any chromosome abnormalities. And her heart rate was 163, so the fear of miscarriage was pretty much gone too! Good News! But i had selective hearing at the last appt. and apparently we could still be looking at Trisomy 21, Downs. Bad News. But anything was better than hearing we would most likely lose her before ever meeting her....

Which leads me to the most important thing Mitch and I discerned over the course of the pregnancy. Of course, an amnio would have confirmed all the questions we had. It would have limited the drs. appts, and the medical bills and would have allowed us the chance to better plan for our time with her, should God give us a full term pregnancy and live birth. But it also would have robbed us of the hope we carried along the way. This is just how WE felt about this. I see both sides of being able to have the certainty. I would have had NILMDTS there taking pics for us. I would have held her more, given her a bath, had travis meet his baby sister and held her. We would have done so much differently. But we also believe with all our hearts that would we have had that amnio, we would have lost her then. We were so convicted of this that even today, i have absolutely no regrets in just living the pregnancy. After all, we were going to live it out no matter what the world said.

Mitch and I were united in what we felt God was telling us and preparing our hearts for. We felt God was preparing us for a daughter we would have to give back to Him. But even with the hope at each appt, we....just...knew.
Wait for the LORD;

Be strong and let your heart take courage;

Yes, wait for the LORD.

Psalm 27:14

And even tho we thought we "knew"....we had no idea just how much courage it was going to take to get us down that road..that hallway...that texas children's NICU.

Monday, July 13, 2009

Cana Lynn Milbrandt : From Conception to 13 weeks

Writing this is keeping me "afloat." And if you are reading it, thank you...for jumping in to paddle next to me, which encourages us to just keep swimming.

January 26, 2008, some of our very best friends were getting married. I was in the wedding and it was at the same beautiful church Mitch and I said our vows in. So it was a renewal of sorts for us. Travis was just 8 months old. I told mitch, half jokingly, that i was going to be wearing a pretty dress AND was going to be hand's off! Neither of us was ready to be parents of 2 under 2. Fast foward 14 days later, and the test was positive. We laughed at each other...and as i swatted at him with my "i told you!", deep in my belly, i knew something was off.

When i made the appt. with my o/b, we scheduled for march 4th. I was 5.5 weeks pregnant. But no heartbeat was heard. We could see it on the screen and all seems normal in terms of being that early. She rescheduled me for a week later, and assured me that our date was just wrong. (those of you who practice NFP, we always know our conception dates). So a week later, a faint heart beat was found. Dr. Laden told us that our approx. due date would be Nov. 1st. But i knew it would be more like Oct. 20th. She wasn't buying that the conception date was later than i said. I joked that unless i slept thru it......

Dr. Laden asked that I keep returning until our dates line up with baby #2's size. She was measuring at 6 weeks. I was 8 weeks. I was 10 weeks, she measured at 7. My friend Jen and I were pregnant with our #1's together, delivery just 3 days apart. Experiencing all the same stuff bonded us and our friendship grew from there...So when i called her to give her the news, I told her "i'm gonna need a favor. Could you go ahead and get knocked up so we can do this together again?" We laugh today about that conversation. I shared my heart was scared.....i mean, people always say that you forget about the delivery and pain once the child was born. Well, 8 months after Travis and i can retell the story, pain and all. I can STILL remember it. IT HURTS!

Week after week, Dr. Laden assured me that most mommies of 2nd pregnancies with healthy #1's almost always have MORE fear than with the first pregnancy. "Maybe because you know better now what you could lose, " she said. "it's natural to be scared but everything looks good right now." Then we got to week 13. Mitch and I had gone to this appt together and Travis was with my mom on her lunch break...she works very close to my drs. office. The previous appt was just the week before and the dr. said she saw some "extra fluid" around the neck. She said sometimes it goes was still so early, but to be safe, bring mitch to the next appt. As we watched the clock, it was getting painfully close to the 1 hour mark. Time to get Travis. Phew! My name was called and as we got me prepped for the ultrasound, the nurse came back in and asked if we could come back in 1 hour. Dr. Laden was called out for an emergency delivery. We had no option. We picked up Travis, grabbed lunch, and then mitch waited downstairs while i went to the appt. alone. I remember this appt. the most. I remember the deafening sound after Dr. Laden said "well, it's a girl." At 13 weeks, we had never even considered knowing the sex of our #2 that early. She said "it doesn't look good, chris." She proceeded to share that it also showed some chromosomal issues. There are three possibilities. Turner Syndrome (TS) which is the least threatening of the what we are "hoping" for. it would take a lot to explain but for time's sake, let's just say that instead of our baby girl having the XX chroms., she could only have 1 X. This would mean most likely that she will be short in stature, and probably won't be able to have children. There are other problems associated but... we won't know for now.

The other two possibilities are quite severe. Trisomy 13 or Trisomy 18...both of which show a great risk of not carrying to full term...or live birth. If the child does live outside the womb, there is a great chance that we would lose her to Heaven within a year...most within the first 24 hours.

I took a deep breath and asked Dr. Laden if she would like to know her name. "Cana Lynn" for the wedding at Cana where Jesus performed his first miracle at the request of his mother, changing water into wine. (John 2:11) and Lynn for her godmother Diana Lynn. My sister and best friend. I walked out of the room, and broke. I tried so hard to keep it together. Seeing all those nurses who i'd spent so much time with over the last pregnancy and was torture not being able to get ahold of myself so that they didn't look so pitifully at me. I don't fault's just that their faces and expressions are locked in now. I just had one floor to go before the doors opened and mitch would be standing there with travis, waiting for the news. As the doors opened, he looked over his shoulder, holding our 8 month old son. Our perfect boy. I walked those 20 steps shaking my head and holding my breath. As i fell into his chest, i told him the news and we just held each other.

We believed that God would be glorified through this..and we didn't have to know "why." We just had to say "yes."

Cana Lynn Milbrandt March 27th, 2008.

Monday, July 6, 2009

Her story as i remember it...

I'd love for this post to be about my girl. But i just don't think my emotional state can handle it. So this blog is a PROMISE (to me? or to you who care to read it?) that i will write and share her story soon.

Today marks day 8 of travis' "sleep strike" (thanks jamie). He takes great naps (2 hours exactly...every day) and he goes down at night without a fight (he gave that fight up at 8 months).
But for the last week, it's been no sleep from 11ish till 4 or 5 am. No breaks. (i don't count 15-25 mins a break.) Then we sleep in seeing as we are both drained from crying..yes, both of us being me and travis....and ok, mitch too. So we all sleep in till 8 or 9 or as late as 1030. It's not a fair trade if you ask me.

So this might be the reason (MIGHT be??) for my lack of emotional stability these last few days.

I'm praying and hoping that tonight will mark the turn of events that will allow us to enjoy my friend Jen and her sweet daughter, Erin..who is coming to visit us for a week, starting tomorrow.
Jen and i were preg. together and delivered 3 days apart. Her friendship came just in time and she's carried my heart in her hands many many times! This is her 2nd visit in less than a year and she's rescuing me and my sanity, i think!

So the life story of Cana Lynn could be up in a week or so. But don't hold me to it.

One more thing,..i recently read a blog on "drowning" and it spoke what i haven't been able to...and i really pray my friends and family can understand what we need and what we long for.

Those of you who have been there with us thru all this, know i count you as my "Simon's."

The 5th station of the cross
With every step that Jesus took, the cross seemed to become heavier and heavier.
A soldier notices that Jesus is so weak, that He is stumbling and will no longer be able to carry the cross by Himself.The soldier sees Simon of Cyrene, who is not one of Jesus' followers, and forces him to help Jesus carry the cross the rest of the way.
Simon of Cyrene shouts out to the crowd in fear that he is not guilty of any crime like Jesus was accused of, but that he was being forced to help Jesus carry his cross.
Out of fear, he refused to help, but too frightened, he picked up the cross and began to walk with Jesus to Calvary.