two years ago.

this photo is from two years ago. i saw this car on the freeway one day when i was on bedrest and we were on our way to the hospital for my twice weekly non-stress tests. it was such a huge sign from above for me.

Two years ago, we were driving to the hospital to get checked in. I felt paralyzed with fear knowing I might not make it through labor and the stress it put on my body, but found the strength to face it head on with the incredible possibility of spending just 10 minutes with the amazing little girl who made me brave, who made me believe in miracles again after tragedy, and who wanted to see us so badly, that she decided to come down from heaven even up against crazy, unfathomable odds. ♥

hoping for a miracle

{source}

i'm wishing for a miracle tonight.

another woman with cystinosis is pregnant (this is a miraculous occurrence in and of itself! what a marvelous world we live in!), is in the hospital tonight with preeclampsia; severe high blood pressure and protein in the urine. she is not yet 26 weeks. unfortunately, women with kidney transplants are more at risk for this complication in pregnancy. my team of doctors thought it was a given it would happen during my pregnancy with sookie.

my heart is aching, breaking, twisted and torn. amelia is to be the 7th woman in the world with cystinosis to have a baby. (that we in the community are aware of...) i have been thrilled to have her join me in this elite little club. our small group going through all of this pain associated with this disease; we absolutely needs these tiny soldiers to carry our hope and push us forward to better days. she is such a brave woman entering unknown territory. if you pray, could you pray for her, her baby girl, and her husband? if you believe in vibes, thoughts, wishes, could you send them their way? whatever is good, light, and full of love, could you broadcast it out their way in oklahoma? this woman has been through hell and back, fighting to stay alive, enduring a kidney transplant, and now this. it isn't fair. it just isn't fair.

i will be brutally honest; this was one of my biggest fears during my pregnancy. i have been feeling pangs of guilt today that i was able to carry little miss S for so long. it truly baffles my heart. i looked at sookie today and asked her, "how did you make it to 38 weeks? how did you do it?"

hoping

wishing

praying (in my own way)

for a miracle tonight.

will you join me please? in whatever avenue you feel comfortable. 

you are all incredible. thank you from the bottom of my heart for your support.


linking up to:

Sookie's Story

{I wanted to post this because sweet Sookie is 8 months old today! A little background information; I was 15 months when I was diagnosed with Cystinosis. I was 11 years old when I had my kidney transplant, my amazing mother was the donor. I am 27 now, was 26 when I gave birth. The following appeared in the Spring/Summer 2010 Cystinosis Research Network newsletter. After a lot of thought, I left out everything about her heart. I felt it would have made the piece triple the length, I wasnt ready to revisit that situation again emotionaly, as I wrote this in April, and honestly, I didn't want anyone to think Cystinosis affected her heart in any way or form, because it didn't. )

Some of the most profound lessons I have learned in life came from little friends younger than 6 years old. But, I always pictured my future involving an adoption.

On a magical evening last June, one of my lifelong dreams started to come to fruition; and then I panicked. I needed to find a perinatologist (an obstetrician who has received further specialized training in high risk pregnancies) whom I trusted with not only my life, but the life of my unborn child as well. I would love to say I was a bouncing ball of sunshine and positivity through the entire pregnancy, but in truth I wasn’t. There were many unknowns. It was complicated, thorny, uncharted territory. I would be walking a path that very few have conquered. I knew the risks. I knew the reality of one of us not surviving, or losing my transplanted kidney. It was by far the most difficult journey of my life, and not to play the victim card, but there have been some jagged ones. With all of that being said, I would do it all again in a heartbeat; with a little bit more optimism sprinkled throughout.

At my first appointment, they said I was barely five weeks along. I felt it was imperative to be followed closely from the very beginning. Synthroid was the only medication I took during the pregnancy, however I was only taking that and Cystagon before. Synthroid is considered safe during pregnancy. I had my kidney transplant in October of 1994, but I am no longer on any anti-rejection drugs. I followed Dr. Gahl’s recommendation to stop taking Cystagon for the duration of the pregnancy, but I did continue to use the cysteamine eye drops as he assured me that not enough of the cysteamine would reach the blood to be of concern.

It’s strange how quickly your life is divided up into a week at a time. It is eerie how just one tiny week can feel like a marathon; emotionally, physically, and mentally. Each and every Thursday I would wake up, basking in the notion she grew one more week safely inside of my womb. At the beginning of it all, I made a goal to make it to thirty two weeks. It wasn’t ideal, but considering my kidney and being at risk for preeclampsia, among other things; I felt it was even a little too optimistic. The ironic thing is, a day after that crucial 32 weeks I spent the night in labor and delivery because it appeared for a little while that I was going into labor. It turned out to be a false alarm, but things were definitely interesting from there on out.

One of the most pivotal moments of my pregnancy was an afternoon when I first started to agonize over the decision to get the H1N1 vaccine. I was smack in the midst of one of my biweekly meltdowns, knowing that no matter what decision we made, it would be the wrong one. I can’t pinpoint exactly what week of the pregnancy I was in, but I knew Sookie was just barely past that viable week 24. I was overwhelmed with the feeling that she had made it this far, but the threat of losing her to H1N1 was a concrete one. That was when Rory held me close and said to me, “She’s going to make it all the way to our arms.” I can’t explain it but that simple statement made it real and possible and it made Sookie unstoppable.

Early on in the pregnancy, I decided to donate the placenta for research purposes. Funny thing is, it actually ended up causing us to have to delay the birth by a few days because of the logistics of getting it in the mail and to San Diego in a timely manner. Being a trailblazer is not always fun!

Even though everything worked out in the end, it was not easy. I had extra doctor appointments, multiple ultrasounds, and non stress tests twice a week starting at 32 weeks. The non stress tests were simply precautionary, and were to make sure she was not in distress. Because of my health history I was at risk for many things, including premature labor, stillbirth, and preeclampsia, just to name a few. There were no major complications, but it did take a remarkable toll on my body. My thyroid levels didn’t want to balance. My dose of Synthroid had to be adjusted constantly. I was exhausted what felt like the entire pregnancy, but all things considered I know I am blessed. Despite the extreme fatigue, I was able to work part time as a nanny right up until 32 weeks when I was put on bed rest.

As the third trimester went on, my doctor explained to me that he was more worried about my health than Sookie’s. I had a tough time with the whole idea of being induced and would never have agreed to it if it wasn’t medically necessary. I am like many people with a chronic disease who feel the need to be in control of every little thing. Even though I have had to rely on modern medicine for many things in my life, I also feel that sometimes letting nature do its thing is the best way to go. It was as if my head knew it was indeed a medical necessity not to push the pregnancy any further, but my heart was best friends with my inner hippie who just kept insisting things could happen on their own. I was most apprehensive about the birth, the side effects and risks of the induction drugs and just never feeling completely comfortable with the notion of forcing my body and the baby to both do something neither of us was ready for.

I felt like I was given miracles on top of miracles throughout this adventure. First, there is the fact that we were able to conceive at all. Then, that we made it to 12 weeks and after that the viable 24 weeks. And then to make it to 37 weeks, which is considered full term, I was in complete shock! In addition, avoiding pre-eclampsia, and my kidney escaped unscathed? Well, that was just icing on the cake!

Induction is a long process. I was prepared for it to take 24 hours. We went to the hospital at 5:30 p.m. on Sunday. At 1:53 on a beautiful Monday afternoon of February's first day in 2010, Sookie came into this world. I held her hand while she was placed on my tummy and Rory cut the cord. Her cries were so loud and full of life; the most precious sound I've ever heard or will ever hear.

It has been tricky to put this experience into a neat little package of words. I wanted this overall chapter of our story to convey the hope that is so tangible, but also the reality that none of it was easy or without risk. I was tremendously lucky, but I also had superb kidney function before the pregnancy. I truly believe that fact was a colossal blessing and key to this whole voyage working out the way it did. I wake up every day and continuously marvel in the beauty and sheer phenomenon that is Sookie.

Not surprised, but still amazed

Whew.

There is a lot going on lately. In terms of milestones, life happenings, big things, every day victories, settling into this shiny new life I have built for myself, and trying to get my head and heart on the same page. (Story of my life...)

Monday was Sook's 6 month check up. She is in the 7th percentile for weight and 2nd for height. Our girl is tiny, but mighty. But you know what? I don't care about things like percentiles and charts because she's growing and she's alive against all odds.

Her pediatrician, Dr. G, who just so happened to be my pediatrician, stopped talking for a second during her visit and simply said, "I'm not surprised, but I'm still amazed."

I wanted to cry, then ask what he meant. That I'm still alive after my medically tumultuous youth? That I grew another life? That she is here and thriving and hilarious to boot?

But I didn't, I just nodded my head and thought to myself, "Yes I know, me too."