More tests for Andrew

Before I elaborate about the new testing we’re having done for Andrew, I thought I’d share a story about the day we received the call from Cardinal Glennon about Andrew’s elevated tyrosine levels. Jonathan and Mama had left the room to do other stuff, and Andrew and I were cuddling. As I kissed his soft downy head, I started to pray, “Lord, help him to be okay,” but my prayer was changed in the midst and became, “Lord, help us to love him the way You love him, no matter what.”

When we got back the results that Andrew’s tyrosine levels had come down and he was given the all clear as far as tyrosinemia was concerned, I was, of course, thankful. Yet I was not jump-up-and-down-woot-woot excitedly thankful. I think the Lord had brought me to a point where I was prepared to be thankful regardless of what He had in store for Andrew, so my thankfulness one of calm and peace, rather than of a huge breath of relief. I was strongly impressed that I should take from His loving hand with thankfulness, no matter what He chose to give.

So, on Saturday, our wonderful midwife came by to do a 3 week check on Andrew and I on her way home from a meeting of midwives in St. Louis. We did not know at the time, but her visit came at the request of B, who acted as her assistant throughout my pregnancy, birth, and post-partum period. B had been to see us last Monday and had some nagging concerns about Andrew, so she asked Mary to check on us.

After giving Andrew a thorough going-over, Mary expressed her concern to us about Andrew. When he was born, his reflexes were all strong, but they have diminished. Of particular note are his palmar grasp (hand grasp) and plantar grasp/babinski sign reflexes (toe curling and spreading). His overall tone is a bit lax as well. Mary encouraged us to see a pediatrician as soon as possible to have him evaluated.

I am thankful for the network of friends that led us to a pediatrician who seems to be a great fit for us. She shared our concerns about Andrew’s reflexes and tone. One possible cause is a metabolic issue, but since he is growing so splendidly (he weighed in at 6# 15oz today!), that doesn’t seem like a likely cause. Another cause could be Down’s syndrome. She recommended that we have a chromosonal analysis done, and after conferring with Jonathan, Andrew and I headed over to the hospital lab to have some blood drawn. We should have results in a couple of weeks.

In the meantime, we are very much at peace. Andrew is a precious treasure and we love him dearly. We are thankful for the gift of having him in our family.
Thanks for your love and prayers!

Andrew – All Clear!

Praising the Lord – Got a call from Cardinal Glennon a bit ago – Andrew’s tyrosine levels have dropped and he’s been given the All Clear. No need to recheck again; it was probably just that his liver was a bit immature.
Thank you for all your prayers!

Stephen’s Creed

Here are the lyrics:

I believe there’s only one God, and He’s a trinity
The Father, Son, and Spirit, Almighty God is He
I believe He’s the Creator, by Him were all things made
He knows all and He’s holy; forever He’s the same.
But you and I are sinners so God sent His only Son
To be born of a virgin, He’s God and man in one.
I believe for my salvation Christ suffered and He died,
He rose again the third day and lives in heaven on high.

Neat Blog/Giveaway

Yesterday kicked off the big Sew Mama Sew spring giveaway. As I’ve rested, I’ve enjoyed looking through some of the giveaways. Tonight, I found a neat giveaway on a blog I think I’ll like a lot. The blog is Mountain Home Quilts and besides the great giveaway right now, it looks like there are some neat homesteading type posts as well.

Encouraging Words

Jesus, I am resting, resting,
In the joy of what Thou art;
I am finding out the greatness
Of Thy loving heart.
Thou hast bid me gaze upon Thee,
And Thy beauty fills my soul,
For by Thy transforming power,
Thou hast made me whole.

Jesus, I am resting, resting,
In the joy of what Thou art;
I am finding out the greatness
Of Thy loving heart.

O, how great Thy loving kindness,
Vaster, broader than the sea!
O, how marvelous Thy goodness,
Lavished all on me!
Yes, I rest in Thee, Belovèd,
Know what wealth of grace is Thine,
Know Thy certainty of promise,
And have made it mine.

Jesus, I am resting, resting,
In the joy of what Thou art;
I am finding out the greatness
Of Thy loving heart.

Simply trusting Thee, Lord Jesus,
I behold Thee as Thou art,
And Thy love, so pure, so changeless,
Satisfies my heart;
Satisfies its deepest longings,
Meets, supplies its every need,
Compasseth me round with blessings:
Thine is love indeed!

Jesus, I am resting, resting,
In the joy of what Thou art;
I am finding out the greatness
Of Thy loving heart.

Ever lift Thy face upon me
As I work and wait for Thee;
Resting ’neath Thy smile, Lord Jesus,
Earth’s dark shadows flee.
Brightness of my Father’s glory,
Sunshine of my Father’s face,
Keep me ever trusting, resting,
Fill me with Thy grace.

Jesus, I am resting, resting,
In the joy of what Thou art;
I am finding out the greatness
Of Thy loving heart.

~Jean S. Pig­ott, 1876.

“Praise the LORD! How blessed is the man who fears the LORD … For he will never be shaken; The righteous will be remembered forever. He will not fear evil tidings; His heart is steadfast, trusting in the LORD. His heart is upheld, he will not fear…” Ps. 112.1,6-8

Update on Andrew

Wednesday afternoon we got a phone call from a nurse in the genetics division at Cardinal Glennon Hospital. Andrew’s state-mandated newborn screening came back showing elevated tyrosine levels (normal is ~250 and his were ~750). He needed to go in Thursday morning to see one of their specialists and have some more testing done. The screening is not definitive, she said; it is an indication that they need to run some additional tests to see what is going on.

While we were caught by surprise by this news, and would have of course preferred that Andrew’s screening had come back “all clear,” we were thankful that we were headed straight to one of the best pediatric care facilities in the midwest. We were told that we would meet with a genetic counselor, then with the specialist. They would do more blood work, as well as a urine analysis.

The “peace that passes understanding” proceeded to envelop us.

Thursday morning, we headed to Cardinal Glennon (about an hour away) with Andrew. Almost everyone we dealt with was very pleasant to work with. The nurse, doctor, and geneticist were upbeat about how well Andrew is thriving and seemed hopeful that the tests will show that his tyrosine levels have gone down to normal.

I’m so glad I took pictures of his beautiful feet on Wednesday (before The Phone Call), because now he has a horribly bruised foot from trying to get enough blood for the amino acid testing. They used that partial vial for the bili test and the lab tech got a vein in his hand on the first try for another vial, which was much less traumatic. The results will hopefully be in next week.

Some info we’ve learned about tyrosinemia:
There are three main types of genetically-passed-on tyrosinemia, plus transient (temporary) tyrosinemia that can be caused by a variety of factors. We don’t don’t much about the ramifications of tyrosinemia, other than that they can be potentially very serious and vary widely according to type. A few links with more info on tyrosinemia, for those who are interested:
Info on various forms; this link is to an overview page, which links to other sections
An article for health care providers
6 pages of info on elveated tyrosine levels in newborns
Article specific to the genetic forms; very interesting
Article specific to Types I and II

From our human perspective, the best case scenario would be to find that Andrew’s elevated levels are already dropping and to see them continue to fall over the next several weeks. On the other hand, His ways are not our ways and His thoughts are not our thoughts. Our prayer is that we would get an accurate diagnosis as quickly as possible; that God will give us wisdom; and that He will help us to love and care for Andrew as He would. We are at peace as we wait. And we treasure your continued prayers.

In the meantime, Andrew seems to be thriving. He is nursing great, having lots (relatively) of wide-eyed awake time, digesting well, gaining weight, and getting sweeter every day. He is so dear to our hearts.

Early Weeks This and That

(Edited to show the correct “publish” date. Started this on 5/6, but didn’t finish until 5/11)

Have I told you lately that I have the most wonderful husband on the planet? God sure knew what He was doing when He overruled our shared thought that we would Never end up together. From his gentle encouragement while I was giving birth to Andrew, to the countless ways he has served me without any complaint, I am thankful.

The first couple of weeks after birth are often challenging for me emotionally. I’m doing pretty well this time. I think one reason for that is the realization that staying bouyant is not accidental for me. If I do not make the conscious choices that help me stay bouyant, I will begin to sink. I’m thankful that the Lord is helping me remember to make those needed choices. Perhaps I’ll write more on this later.

Dad and Mom Smith were gracious enough to come get the Blessings in the middle of the night Thursday night (Friday morning) and to take care of them until they brought them home Sunday afternoon to meet their new little brother. Many thanks to them.

My beloved Mama arrived last Tuesday, May 4. She is such a blessing to me! It is a treat to have someone who knows me well enough to anticipate my needs/wants, who sees the “tired” in my eyes and sends me to bed, who is a bosom friend, and… who is such a good cook! The Blessings have loved having G’ma around as well. Lots of game playing happening at our house these days! We are so thankful to Mama for coming to take care of us, and to Papa for doing without her while she’s here.

Grace had been asking for weeks about when “our newborn baby” was going to be born. She still sometimes calls Andrew the “newborn baby.” So sweet.

Stephen must have caught the “newborn baby” label from Grace. When they came home on Sunday afternoon, it took him a bit to warm up to this new person. But before long, he was sitting on our bed with Andrew in his lap. He looked up to tell me, “This is our newborn baby.” Then again, with serious eyes, “Where did you find it?”

Stephen has already started bringing gifts to the newborn baby. I guess he knows Andrew is a boy… he brings me flowers, but he brings Andrew rocks.

Andrew has hair that is almost auburn (brownish with blond and red highlights), with a very interesting hair growth pattern. He has multiple cowlicks, two of which send his hairline above his forehead in two different directions. He also has some wave, so it will be fun to see how his hair looks in a few years.

The older Blessings are always ready for a turn holding Andrew. It is sweet to see their love for him.

Another interesting feature of Andrew’s is his eyes. I realized several days ago that Andrew doesn’t have blue eyes! Though the other Blessings eye color varies, they all started off with blue eyes. Not Andrew! It’s hard to tell what color they are/will be, but they’re not our typical deep baby blue. How fun!

Last week, Mama and the Blessings helped me with replanting our pepper seedlings. They had outgrown their peat pots, and it’s a bit too early to put them out in the garden. They should make it till transplant time just fine in their new pots.

Enough of random thoughts… time for a snooze.

Mothers Day Thoughts of Gratitude

Years ago, I realized that Mothers Day was much more fun if I focused on being grateful for the gift of motherhood instead of focusing on what recognition/admiration/gifts I might receive. To me, Mothers Day has become “Thank God I’m a Mother! Day.” It is also a great time to express my thankfulness to the mothers in my life, from my own Mama (the best on the planet!) to my mother-in-love, to the many women who have mothered me and/or taught me about mothering by example.

This morning, Andrew and I stayed home from meeting to rest, and I made some special bookmarks for our Blessings. Andrew doesn’t have one yet, but I don’t think he’ll mind if I’m late. I thought I’d share the text from the bookmarks in a gratitude post.

I love watching the young man you are becoming as you grow toward manhood. Your love of reading and thirst for knowledge is a joy, and you are a terrific big brother to your siblings. I appreciate your thoughtfulness and consideration. I pray that you will continue to yield to the Lord and become a godly man who follows Him with all of your being. I thank God for the blessing of being your mother, Davey. I love you.

What a joy it is to watch you grow and to see your character develop. Your love for justice, your gentleness with the Littles, and your entrepreneurial spirit are just a few of the things I like about you. From the day you were born, I have looked forward to seeing what God will do with your lightening bolt spirit as you submit yourself to Him. I pray that as you grow into a man, you will give yourself even more fully to your Heavenly Father & His will for you. It is a blessing to be your mother, Barak. I love you and thank God for you.

Your sweet and tender spirit is a delight to my heart, dear daughter. I love to watch you nurture your younger siblings. It is a joy to watch you growing into a young lady who wants to follow the Lord and who is learning to yield to Him and go to Him for help. To hear you singing “psalms, hymns, and spiritual songs” in the lovely voice the Lord has given you has encouraged my heart countless times. I pray you will yield to Him as He continues His work in your life. I thank God that He blesses me with being your mother, Elanor. I love you.

What a delight it is to have your “ray of sunshine” self in our family. I enjoy your bright spirit, your love of fun, and your affectionate nature. As you grow toward manhood, I see God growing you into the man He wants to you be, teaching you the balance between the fun and the weighty. I pray that you will submit to Him as He makes you more like Jesus. You are a joy-bringer, and I thank God for the blessing of being your mother. I love you, Josiah.

A few of my favorite things about you, Katie:
~ You have a lovely smile that you share often.
~ You love to be outside enjoying God’s creation.
~ You like to read, both to yourself and to your younger siblings.
~ You surprise me!
~ Your cuddles
I’m blessed to be your mama, Katie.
I love you!

A few of my favorite things about you, Grace:
~ You love to hug and cuddle.
~ You are funny.
~ You’re a good helper.
~ You have a sweet smile and a loving heart.
~ You tell fun and interesting stories.
I’m blessed to be your mama, Gracie.
I love you!

A few of my favorite things about you, Stephen:
Your smile
Your hugs
Your kisses
Your voice – the way you say words like Amimal and Cupchup
Listening to you sing songs about Jesus
Stephen, I love you and I’m so glad to be your Mama.

I also made one for my precious Mama:

I am blessed beyond measure to have been given you for a mother.
Thank you for the example that you are to me of godly womanhood: as a wife, mother, sister, and daughter.
I see Jesus in and through you and am blessed & challenged.
Thank you for your unconditional and sacrificial love.
Thank you for being my friend, for lifting me up countless times, and being on my cheering squad no matter what.
I love you, Mama
Happy Mothers Day
May 9, 2010

Love That Will Not Let Me Go

Laurie posted this hymn on her blog recently, and I just have to pass it on. I’ve loved the lyrics for many years, but have rarely heard it sung. This is a simple and beautiful rendition from Chris Rice. Be blessed!


O Love that wilt not let me go,
I rest my weary soul in thee;
I give thee back the life I owe,
That in thine ocean depths its flow
May richer, fuller be.

O light that followest all my way,
I yield my flickering torch to thee;
My heart restores its borrowed ray,
That in thy sunshine’s blaze its day
May brighter, fairer be.

O Joy that seekest me through pain,
I cannot close my heart to thee;
I trace the rainbow through the rain,
And feel the promise is not vain,
That morn shall tearless be.

O Cross that liftest up my head,
I dare not ask to fly from thee;
I lay in dust life’s glory dead,
And from the ground there blossoms red
Life that shall endless be.