Monday, April 25, 2011

up with down syndrome: chapter 2

one year ago.

All of these photos of me, pregnant with Amos here were taken one year ago today, by me, alone with photo booth on the macbook. They were captured exactly two days before we learned something was wrong. My face looks happy and light in these pictures to me. I remember this day, so joyful with our growing family, and so excited to meet the little one growing within. When I used to look at the Laura in these pictures, I used to envy her ignorance. I envied her lack of awareness at what she was about to walk through and that she didn't have to, yet. I envied her, period. I wanted to go back and be her, many times.

 I thought I didn't look too terribly pregnant from the front.

Fast forward to nowadays, and I look at that Laura with such compassion, with such patience, love, and a fierce desire to reach back through time and just hold her hand. I wish I could whisper gentle encouragements in her ear that you're going to walk through fire soon, but all will be well. And that you can do this. And you will not only do it, you will love it. And rock the heck out of it. Let's go. Chapter 2.

Saturday, May 8, 2010

This last week began incredibly tumultuously with my parents and sister having gone home just before the weekend began. (it was my mom's 60th birthday weekend)

Joel and I are struggling struggling struggling, and me just feeling incredibly in the dark, scared, alone, and mourning. I felt like I was in limbo and not sure where to begin any kind of journey. 

 

Joel was and still is really struggling with having any awareness of how to support me, or how to recognize that he can look to me for support as well, and this has caused a lot (A LOT) of extra strain, pain, stress and tears over last weekend and most of this last week. All I can do is pray for him and continue to attempt to nurture him as best I can at this time. 

 

Energy is at a premium for me - I have great difficulty getting up and down the stairs, even up and out of a chair or bed. Due to the size of my belly and the amount of extra fluid, it affects my breathing and comfort and everything - so you can frequently hear me saying "oh Lord!" when I have to get up to get a glass of water or use the bathroom. Then when I do get up my uterus always goes into contraction - Braxton Hicks, still - but at this stage they are strong and painful so this slows me down even more. Jacob is feeling a little left out being that it is hard for me to pick him up - my body is thinking in many ways it's past 42 weeks gestation, and it has been determined that I am carrying around 10 pounds in extra fluid alone - so it's almost like I have 1 or 2 extra babies in there. Goodness. 

 

As I said my mom celebrated a milestone birthday – her 60th! – back home in Lloydminster last weekend. They put on a surprise party for her which I was saddened we were unable to attend. Her actual birthday day (Monday, May 3) she spent driving in the stormy snowy weather to come back to Calgary to help me, and help us. In the meantime, anyone who is asking how they can help or if we need anything, I am saying FOOD. 

 

I cannot stand long enough to prepare A meal let alone 3 a day, and I struggle with bending, lifting, walking, sitting, laying down and breathing. So... if you feel it being placed upon your heart to help, please make meals (even frozen meals) as we are going to need lots of help for several weeks (baby will be in ICU following surgery for a minimum of 2-3 weeks if everything goes perfectly perfectly well). 

Boom. Side profile. Huuuuuuuge. But still that unknowing happy face. She's so innocent, this Laura. Sweet girl.

My mom is helping immensely, but I don't want to and cannot burn her out as our entire family's caregiver before we have even entered what I refer to as the “really hard part” - the labor, delivery, childcare of our sweet Isaac, Egan and Jacob through that time, then my recovery, baby's surgery, his recovery, and the days and weeks to follow with him staying in hospital while we are between hospital and home, and then bringing our patched up little newborn, my fourth child, home for good (that every family needs support for even outside of complications.) This isn't even to mention the journey for little Amos going from babe in utero to nourished via IV to central line, then fed through an NG tube, then somehow sometime making the switch to breastfeeding, with me pumping all the while. Pray pray pray his little body recovers quickly and his little gastrointestinal system gets the message that all is a 'go!' and that these steps move along without complications and upset.

 

Since we did get to meet with all of the specialists this week: geneticists, neonatologists, pediatric surgeons, and the doctor from the NICU – my heart, mind and spirit were so much more at ease have them answer our many questions and to learn more specifically what everything will look like once Amos arrives. Still a scary & sometimes dark journey, but feels like we are being given lamps to be able to illuminate the way somewhat. I again am so amazed and feel so blessed that the people who work in each of these areas are so incredibly tender and compassionate with us; each one has touched my arm, cradled our hands, and spoken with such knowledge, experience, compassion, and kindness that by the end of the day where we spent from 0745 to 3 pm in these appointments, I felt like my burden was being lovingly shared among all of these people. One comment from the NICU doc stuck with me and gives me a sense that all of these people love my baby: “we will all do our best to take good care of all of you now and especially once your wee treasure arrives”.

 

The doctors have all commanded me to take it easy and this appears to be what Joel is really struggling with how life actually looks and what he needs to be doing with a wife who must take it easy. - over and over they say it - as the possibility of me doing too much and having my membranes rupture (water break) at home and cord prolapse (the umbilical cord rushing out ahead of baby in the surplus of fluid) is very serious, very possible, and is a 911 emergency. Thank God I'm an L&D nurse so I know what to do or what to tell other people to do in that scenario! We have also been made well aware that I may be hospitalized at any point, and held there until they, God, or baby decide 'it's time'. Pray we don't get to that point.

 

I was in prayer and contemplation and changing my mind about having the amniocentesis done (the test consisting of a needle going into my belly, into my uterus to withdraw and test a sample of amniotic fluid for down syndrome and other trisomies (& other genetic defects). I began to get a clear sense that if I knew this little man was going to be a baby with Down Syndrome, then in my labor I could just be excited to meet him just as he is, that I could let go of the fear and see him for just being our baby and not having my first question as he arrives into this world be "can you tell if he has Down Syndrome?". Instead, I felt this profound sense of peace - if I knew, then I was looking forward to just seeing his little face and how much he looks like each of our other babies, or who's dad's ears he has, what his little fingernails and toenails look like, or if his lips look like mine or his daddy's. You know?


A lovely, lovely doctor who took nearly an hour to speak with us explained that he neither recommended nor didn't recommend the procedure. He just explained very gently how I may feel more at ease knowing; simply based on how this was like a trip we have to take - only we're not completely sure which plane we're supposed to be getting on so we don't know which travel book we should be reading even though we already have both books in our hands. He set me at ease and reaffirmed what I had already decided, and validated that what I felt was normal and expected. Joel spoke up and told him “it would really reduce the stress level in our house if we just knew the baby wasn't down syndrome”, to which the gentle doctor very softly replied “and what if he was?"


The room was quiet for a moment.

 

Joel: “Well, then we would make sure to have lots of support around us.”

 

Dr.: “You're going to need lots of support around you.”

 

I nearly cried. 

 

We are going to need lots of support around us, regardless – and I am so grateful that it was this gentle, intelligent, thoughtful and communicative man who affirmed that for me and explained that to my husband with such tenderness. He went on to say “The two of you have a long, long road ahead of you. You will need lots of support around you.”

 

I decided to get the test done. I was incredibly scared. It was painful, and took longer than I had anticipated simply because they had to take a little more fluid out since the baby's skin cells floating around in the fluid would be in a lower concentration due to the high volume of all the excess fluid. 

 

I nearly fainted – Joel told me my eyes rolled back in my head, and everyone who knows me well knows I have weird seizures when I faint. Not pretty or fun. Needless to say, I hung in there, but spent the remainder of the afternoon and evening exhausted, emotionally drained, and feeling a little bit like I was back chest deep in the heavy cement. We will find out the results probably by Tuesday. God is carrying us all this time, I have such a strong sense of that again. Thank you for your love and prayers. Please don't stop yet.

 

At this point, baby's lungs are good to go. I am huge, uncomfortable, but know I can persevere knowing it is best for my newest little sweetie. I have been told that I most likely will be induced around 37/38 weeks so as to prevent the possibility of cord prolapse with rupture of membranes, unless something happens before then.

 

Until then, we wait. And we hope. We pray. We welcome any and all help. And I dream dreams of a little fella filling our house with smiles, coos, diapers, wails, laughter, sleepless nights, and a family with the new baby we have all been yearning to meet. 

 

Can't wait to see his sweet face and tender toes.




Would I go back to being this Laura now, you may wonder? 
No.
Never.
Not in a million years.

Who I am now, today, with Amos, with Down Syndrome, and the new and improved torn-open-and-fixed heart that has been given what it was always missing and never knew it needed... I am ever so grateful. I am so happy. God gave this to me, and I have absolutely no doubt whatsoever that He knew exactly what kind of gift this was, why I needed it, and what it would do for me. And baby? I am so blessed. So very, very blessed.

I love that I wrote can't wait to see his sweet face and tender toes. It surprises me sometimes, to see that I still felt these joyous and beautiful and tender loving things through a time that only looks like darkness when I look back in my memory. Or maybe it's just those scales, you know? They were still on my eyes then, and they're not now. I tell ya, dang, it's bright over here, on this side - of course that time looks dark.

Stay tuned for Chapter 3.
Coming soon. Happy Resurrection Sunday. Scales peeling off anywhere? 






3 comments:

  1. I've been following your story Laura. You're inspiring to read. Like all mom's to be, when I was expecting I would think about all the different challenges that some babies are born with and I would also think that I would be so devastated if that were to happen to me. But one on your lines has stuck with me, "If I would have known then what I know now I would not have cried so many tears" (or something like that). I now realize that there is more to the baby then "the challenge" (whatever that may be) You make that so clear with all the pictures of your happy, sweet little boy. Thank you.

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  2. I agree with Corina; my favorite line. I wouldn't have cried (so much)either after we found out about our Nora girl--our "light", had I known then just how magical she was going to make our lives!

    I am reading your chapters with bittersweet pangs in my heart. I want to hug that girl in the photos and tell her she will smile like that again. And I want to tell the new Laura that I'm so proud of her!!!! You're writing (or already wrote) your story....I'm not so brave yet as to revisit my memory bank of "those" days.

    So thankful for the meaning of Nora's name. God new exactly what he was doing when he placed that name on my heart :) He knew I'd need the "light"; both through Jesus & my girl.

    Big hugs,
    Kelly

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  3. i *love* these posts...
    The positive pregnancy test resulting in a high five with your husband kinda got me on the last one... i'm so glad you're writing this.
    i can't wait for chapter 3.

    ReplyDelete

make no mistake, I am smitten with your words. please say hello, or pour something out - you will make my heart happy.

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