Monday, April 16, 2012

Trisomy 21

I've spent the last few days wondering how to begin this post. It's a bit like using a delicate tea cup to catch a drink of water from a fire hose. There's just too much coming at me. Somehow though, in the late hours of the night as I nurse this new little being I've had the chance to sort through a few thoughts and wanted to record them here for me, for family.

When Elias was born, he had a few 'markers' that created some concern among the nurses. Namely, the excess fatty tissue at the nape of his neck, the gap found between the large toe, simian creases across the hands and a protuberant tongue. His facial features were not so obvious and unlike other babies he didn't have quite the definitive hypotonia (lack of tone) in his body. Nothing was said to us but on that first night together as I burped him, I noticed the tissue on his neck and the remember clearly thinking that it looked like Down syndrome.

We had more pressing concerns though. As with each of our children, the jaundice common to newborns often peaked higher and longer than typical. This is given to their genetics and with 2 other children and little time off for Kent, we were anxious to begin photo light therapy immediately rather than wait and be admitted again later. We were discussing these concerns with the pediatrician when she brought up the 'small suspicion' of Down syndrome. Strangely I was not surprised by this, but it was difficult for Kent who I had not had the chance to communicate my thoughts from the night before. The doctor was rather cavalier as she addressed it simply because his tone was rather good. Even when I brought it up again to another doctor at the same practice, he had very little concern and felt that at worst, he might be a mosaic (where some cells in the body reflect the extra chromosome and others do not) rather than 'fully Down syndrome'. The test results would be back in 7-10 days.

Meanwhile we went ahead with the photo therapy. I requested that a priesthood blessing be given Elias and as Kent did so, his voice filled with emotion. The blessing stated that Elias had a special mission here in life and that it was to help his family return to their Father in Heaven. It called to mind the blessing I had received when all the trouble with the pregnancy started. At that time the Lord said that this child would come at the appropriate time and that he would be a forerunner of many things in our life. I had not given it much thought until then, but I knew from those words that either Elias would not be long with us in this life, or that he would have challenges that would require our family pulling together to work through them.

Nearly 10 days later, we had a draw on his billiruben levels. The initial photo therapy was insufficient, he was at at 20.9 and we were told to go back to the hospital immediately. At the time Kent also asked for the results on the chromosome testing. Literally while we were at the check-in desk, the nurse practitioner called wtih the result - positive for trisomy 21. Watching Kent's face and I knew the results without Kent saying the words.

I remember looking at my beautiful son and feeling so strange. He was still my boy, always and forever, my love for him had not changed and yet it felt like something SHOULD have changed with the pronouncement of Down syndrome. I chalked it up to denial and mulled over my feelings as a few days passed. I figured at some point I would feel an overwhelming sense of grief and loss.

In the late hours I'd surf the web while feeding my little boy. I came across several blogs and read their birth stories with Down syndrome. In particular, one from Kelle Hampton where she describes her intense grieving the night of her child's birth. Somehow I felt as if I ought to have experienced the same thing and yet as I read other blogs from Rick Smith better known as Noah's Dad, I realized that grieving and acceptance is so very individualistic. I felt a sense of wonder at how calm I was.

If being a mother of 2 already has taught me anything, it is that no child is what we expect them to be. They were their own little individuals long before God gave them to me. They each have their own strenghts and weakness's, and Elias will be no different. His weaknesses are only more apparent because of their physical nature. I am well aware of some of those challenges he will face, and I'm sure I will weep for him as he suffers and struggles, just as I will with Isaac and Keila.

My greatest anxiety was for myself, as selfish as that sounds. Could I honestly be a good mother to this child? I lack so much in patience already with the other two and slowing down was not easy for me. Could I do it now, before Elias was at a stage that would be much more demanding? How would I balance myself between my children, my husband and myself? Would I be 'present' enough to hear the promptings of the Spirit and see where each person's needs are and how best to help fulfill them?

Then I read an article by Elder David A Bednar entitled The Atonement and the Journey of Mortality. "It is through the grace of the Lord that individuals ... receive strength and assistance to do good works that they otherwise would not be able to maintain if left to their own means. This grace is an enabling power ..." So there it was, did I really have faith in my Savior that He knew what He wanted when he gave me Elias? More than that, did I have faith He would enable me to do more than I am currently capable of? Would He make up the difference where I was lacking? I have proclaimed this belief for all these years, was I ready to show it?

So for the most part, peace has taken the place of confusion and anxiety. It's a humbling thing to be a parent to any child. There is something about the process that teaches you the value of a soul and brings out the best and the worst in you. Simply having Elias in our home has made Kent and I assess and work on how we deal with Isaac and Keila. There is a greater sense of calm and we are enjoying each other more. I'm sure this will not be constant, but hopefully it will be something we return to again and again as we become better parents.

I'm so grateful for the support and positive words and service from those around us. Everything from meals, to child care just so I can get some sleep or take Elias to an appointment ... these are all things that remind me how blessed I am. A special thanks to all those who patiently listen to all my concerns (no matter how great or small) who allow me the opportunity to be a 'anxious mom' and then gently remind me that everything will be okay. Most of all I'm owe much to the gospel and my Savior. Certainly I would not be where I am without Him and His gift of family, friends and home. "For the Lord Jehovah is my strength and my song; he also is become my salvation" (Isaiah 12: 2)

As for Elias, his middle name, Tien Yeuk, means Heaven's Covenant, a reminder to us of the promises God makes to us as we do our best to fulfill our part. Initially Elias was given this name in the hopes of reminding him of blessings we are given in abundance as we live righteous lives. Now I think that he himself is our family's reminder of these blessing and promises. I'm grateful to have him in our lives and look forward to seeing him grow and what we as a family learn from him!

Many thanks to our amazing photographer, Sarah Allred.

Thursday, April 5, 2012

Elias Tien Yeuk Montierth

Sunday morning of the 25 of March I began having contractions in 10 min intervals. I really didn't pay much attention to it, after all, I'd been having them all week long. I'd love to say that I was still as positive as before, but I was rather worn from the pain and found myself often near to tears in that 36th week worried about how much of me (mentally and emotionally) would be left when the time came for this little one to come. The Lord knows me well and within minutes I felt a little gush - my water had broke. Apparently you're suppose to go to the hospital immediately when this happens, but perhaps due to it being a new experience for me and also a little pride, I was afraid to rush in only to be told I had peed on myself. ;0) So I dilly dallied about, waking up Kent and the kids until I could be certain it wasn't an overactive bladder!

I called a friend who came over got the kids dressed and ready for church. It was nice knowing that it would be a 'normal' day for them. (Can you tell I have control issues?!) We got to the hospital around 10 (3 hrs after my water broke) but my body was being contrary and contractions had slowed down. The doctor on call gave me the option of waiting to see if my body would go of it's own accord or inducing. I hadn't had much in the way of sleep so we opted to wait for and hour or two and I dozed quietly on the bed. At 12:30pm we got the 'party started' with an epidural and pitocin. Interestingly enough, our nurse and anesthesiologist were the same ones we had with Keila. Unfortunately something funky happened this time and my entire right leg was so numb you could have stuck a knife in it while my left side had me crying in pain. The monitors were off somehow and not registering anything so Kent was rather puzzled by my gasps of pain but when the tears started rolling he was pretty testy with the lack of response from the nurse's station to his call. I was checked and fully dilated. I was given the option of a higher dose on the epidural or trying to push though I hadn't felt that sensation yet. I was so ready, get this baby outta me! so one test push moved kiddo #3 down and our nurse was calling the doctor to get ready to catch!

At exactly 2:45pm he was born. It was love at first cry! He was small compared to my other ones, only 6 lbs 5 ounces and he was beautiful. Such long piano fingers and a tiny sharp chin, Elias Tien Yeuk Montierth was here.

Face to face at last! Who could not love such a precious bundle from heaven!

I like to call this his tryout for a part in a Dr. Seuss movie!

Isaac and Keila adored him the moment they met him. Keila has never been one for dolls, let alone being gentle with other babies, but she and Isaac were so tender and loving, it made me gush with warmth inside.

Welcome to our beautiful family and our crazy little world Elias. We love you!