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Monday, April 27, 2009

The Great Confession

I recently bought a book from SOFT - Support Organization for Trisomy 18 and 13 and Related Disorders called 'Care of the Infant and Child with Trisomy 18 or Trisomy 13' published just last year and based on compilation of recent data from trisomy children. According to the book, 90% of (T-18) pregnancies end in stillbirths or termination. Of those that survive, only 50% make it to one week old and only 10% to 1 year old. 90% of T-18 children have major heart defects, and at least 50% have kidney defects.

Tuesday evening, April 28, will mark Rebekah's second big milestone - the one week mark. I wait in eager anticipation knowing that she'll make this one!

We know we have a long and difficult road before us. Rebekah failed her newborn hearing screen, is on a heart/apnea monitor due to low heart rate and shallow breathing, and has a club right foot. She acts like a preemie in many ways, even though she was born at 38 weeks. This is most likely due to the chromosome disorder and the preemie like behaviors may not be something she ever grows out of. However, she is simply gorgeous and looks like a little China doll! She has no audible heart murmur (implying that any VSD seen in the ultrasounds is most likely gone), and her renal ultrasound showed TWO kidneys (we could only ever see one in the prenatal ultrsounds). Although the doctor thought her rectum might be superficial at birth, I can assure you it is working just fine and puts out many a poopy diaper all day long. Her esophagus is intact, she can suck long enough to take her food, and although she appears to have the typical T-18 clenched fists, she does open them and extend her fingers quite frequently. I do believe God has answered many prayers regarding Rebekah and has provided us with some of his miracles! She is a miracle child to behold! And she has even softened the hearts of several medical professionals who now see her as 'viable and living', not 'incompatible with life.' Praise God for his this gift!

Rebekah came home with us Monday afternoon April 27th. She is still a little below her birth weight (by 5 oz.), but she is eating fairly well - consuming up to 40cc per bottle by the time we left the hospital. We had the feeding tube (gavage feeding through the nose) removed and will only insert it if we cannot get at least 30cc by mouth during a feeding. We have been trained in infant CPR, gavage feeding and apnea monitoring. We have home health care set up for their first visit Tue and her first pediatrician appt on Wed. We also have an agreement with the NICU that we can readmit her should the monitor go off excessively or we fail to feed her enough. Other than being sleep deprived, we are probably as prepared as we can be for what lies ahead.

Despite all of these great joys, praises and milestones, Michael has had to watch me be a crying basket case over the last 2 days. He said I've come this far in sharing about Rebekah, so I need to be honest so that if any are chosen to follow my footsteps on this tough journey, they would know the full range of emotions that will be felt. Between my raging hormones, and the terrible prognosis of full trisomy 18 children (in terms of long term viability and capability), it was, quite frankly, a very bitter sweet day for me.

On the praise side, I am incredibly blessed and praising God for this time we have with sweet Rebekah. Oh how her brothers love her and pray for her! How tenderly Elijah hugged and kissed her today! Even Josiah was warming up to the idea that there was no longer a baby in my tummy but now one in my room! My prayer for sweet Rebekah all along has been that she would make an impact in this world - that her life would have meaning and purpose, and there is no doubt this is true! I bet there are a thousand people praying for this precious creation of God! I have received countless emails and facebook responses saying how this church and that church are praying for her, how individuals have been impacted by our story and brought to their knees in genuine prayer as they have never prayed before. I am watching my own kids grow in their faith. This is extremely humbling and unbelievable to be a part of such incredible 'heart' work! God is good indeed for answering so many prayers and renewing faith through one little tiny baby.

On the bitter side, I have spent the last two days as a complete basket case. I have not cried this much in my whole life, and it isn't all tears of joy. There are tears of fear, stress, doubt, loss of freedom, and even things I can't put into words because I am so ashamed to think them... I feel completely overwhelmed and I know my life is going to be very different from now on. I KNOW if won't always be true, but I currently feel like a prisoner to this little babe. I worry that I won't be able to meet the needs of my other children as I attend to her. I wonder how I will get it all done - the cooking, the cleaning, the homework, the normal household stuff. Then after all of these feelings (especially after praying for so long for time and hope) there is the guilt. How could I think these things about this child... the one I LOVE with all my heart and have prayed about for months? the child that Jesus loves and has entrusted to my care? The child that so many of you love too, even though you have never met her in person?

A friend of mine sent me a message the other day and said "In all this whirlwind of Rebekah and the birth . . . how are you doing? I think about how you'd probably like someone to take you into their arms and tell you everything is ok. You must be so weary." All I can say is she was right on the money!

So that is my confession to you. I figure if we are sharing this journey, then I wouldn't paint it all roses but give you the grim reality of it all. Oh, my faith is still strong, our resolve to be Rebekah's champion is firmly in place, but I am just a Mom and an imperfect one at that. Although I believe all of the scripture I quote and know that my strength comes through the Lord, I am still full of doubts, fear and resistance to this path that God has placed me on.

Then Michael reminds me that Holland is a nice place too.


  1. Oh Susan. Your fears and worries are so valid. Please don't kick yourself for thinking them. Just pray. I think its a natural process to get from one place to another. I finally read the Holland story and its so beautiful.... and must be so true for you. We are still praying for you... everyone is... thank you for being so honest and open...

  2. Oh Susan... this just makes me love you more. Please call on me if I can help. You know... maybe come stay with her so you can get a bath and a nap one morning (Thursdays work best for me, but Tuesdays can be arranged too.)
    Again, thank you for including me in your life and Rebekah's.

  3. Susan, I'd love to help you with babysitting when you need quiet time. Your kids know me from Sunday morning at the nursery check in. Life sometimes is overwhelming. Take a break, don't worry about the house, love your children and yourself. Call me at 458-9112. I'm great with laundry and a vacuum cleaner. Remember I'm retired. Thanks for your honesty. God will bless you. Ellen Phillips

  4. Susan, my best friend had a baby with down syndrome almost two years ago. She didn't know there was a possibility until just minutes before birth. She also sent out the Holland story. I can't say I know what you are going through but a lot of what you say reminds me of feelings she had, too. I remember saying or hearing she had to grieve the loss of a normal life. I imagine you don't have much time to grieve and so much is unknown. I wish there was something I could do. I will continue to pray, of course and ask God to touch your heart with contentment. With love, Jenny Johnson

  5. Susan-
    I am so sorry that I am just checking in now...oh those pictures of Rebekah with your family are just BEAUTIFUL!! I am so thankful that the Lord has answered so many of your prayers for this journey- each of our families prayed specific things over our precious babies and He knowingly answers each one of them as He sees fit... it is incredible to watch.
    I can't say I know how you are feeling since we didn't get that time with Maddox to bring him home, but I have a couple of friends who did if you ever want to chat (Yvette- Tristan's mom and Karen- Jacob's mom)- with them or me. However, I do want to tell you that some of my greatest fears we exactly what you just listed- taking care of the other family members, etc. You know to be patient with yourself~ enjoy each and every moment with her, as we strive to do with each of our children, and keep ever-present in your mind how God has you all firmly in the palm of His hand.

    May He always bless you for your faithfulness and your willingness to live out HIS will for your life.

    I will be praying for all of the things you mentioned and checking in often. If you want the phone numbers even for those girls (because I know your time is limited and stretched) PLEASE let me know!

    Prayers & love,

  6. You are human and humans feel all emotions. What makes you extraorinary is the ablity to admit all these emotions including the ones that aren't all roses and sunshine. I went to high school with Mike and have been following along with your journey on FB. You are a strong family!