Cleft lip

One of my prayer requests when I was pregnant with eliana was that I would not be scared of her face once she came out.  I had never met anyone with a cleft lip before and I was nervous for our first encounter.  People told me that my motherly instinct would look past her appearance but I had my doubts.  I didn’t think my motherly instinct would go that far.  When she finally came though, to my great surprise, I thought she was the cutest thing I ever saw.  And objectively I can say that she looked scary with her eyes covered with white antibiotics and body covered with some other stuff.  She looked like a foreign invasion from outer space.

To this day, I think her cleft lip is cute.  It gives her a bigger smile and allows her to make faces that I would never be able to make.  But her time with the cleft lip is coming to an end soon.  I met with eliana’s plastic surgeon yesterday and we set the date for the cleft lip surgery (Oct 17th)!  I’ll miss her cleft lip, but I’m thrilled to see her new face.  🙂  🙂

For now, I will be taking a bunch of her pictures while she still looks so cute in her old comfortable self.

 

 

John Piper’s letter (to us)

A letter that John Piper wrote to a couple in his congregation. I changed the names and sent it to Maria as an encouragement from one of our heroes: 

Dear Alex and Maria,

Last night, as I prayed with Noel, you were heavy on my mind. I said,
“Lord, O Lord, please let me be a pastor who preaches and leads and
loves in a way that makes the impossibilities of life possible for
your people by a miracle of sustaining grace. Help me to know the
weight and pain of this life and not to be breezy when the mountains
have fallen into the sea. Help me to have the aroma of Christ’s
sufferings about me. Prevent shallowness and callousness to pain. O
Lord make me and my people a burden bearing people.”

O Alex and Maria, I am so heavy with your child’s disability! God is
visiting Bethlehem with such pain these days in the birth of broken
children. Randy and Ann Erickson with their baby’s broken heart; Jan
and Rob Barrett with their baby’s liver outside the body; and your
precious little one! Is the Lord saying, “I have a gift for your
community”? This is not one or two or three couples’ burden. This is a
gift and call to the whole church. This is a word concerning the
brokenness of this fallen age of futility. This is an invitation for
you all to believe that “here we have no lasting city” (Hebrews
13:14). This is an invitation for you to “count every gain as loss for
the sake of Christ” (Philippians 3:7). This is a shocking test to see
if you will “lose heart” when in fact God’s purpose is to show that
his grace is sufficient to renew our inner person every day to deal
with the “slight momentary affliction which is preparing for us an
eternal weight of glory beyond all comparison, because we look not to
the things that are seen but to the things that are unseen; for the
things that are seen are transient, but the things that are unseen are
eternal” (2 Corinthians 4:17-18).

O Lord, open our eyes to your love in this pain. Open our eyes. “Then
Elisha prayed, and said, ‘O Lord, I pray thee, open his eyes that he
may see.’ So the Lord opened the eyes of the young man, and he saw;
and behold, the mountain was full of horses and chariots of fire round
about Elisha” (2 Kings 6:17). Alex and Maria, the mountains
surrounding your lives are filled with the horses and chariots of God.
Only to the eyes of unbelief does the devil have the upperhand here.
God is at work in ways and for years and generations and millions of
people that we cannot now imagine. This is ours to believe and to
bear, no matter the cost. This is ours for this short life.

It seems to me that this life is a proving ground for the kingdom to
come. Some are asked to devote forty or fifty years to caring for a
handicapped child instead of breezing through life without pain.
Others are asked to be blind all their lives…

But only in this life—only in this life. I want to be the kind of
person who takes that “only” for what it really is—very short. Prelude
to the infinity of joy, joy, joy. But not yet. Not entirely.

How will we ever cope with the burdens of this life if we believe this
is all there is, or even the main act in this drama of reality? O
Lord, give us your view of things.

May God fill you with anticipated joy.

“I consider that the sufferings of this present time are not worth
comparing with the glory that is to be revealed to us.”

I love you,

Pastor John

Chromosome 18p deletion

I guess any genetic disorder has quite a  wide range of severity in its features but I feel like chromosome 18p deletion must top them all.  This genetic condition that eliana has ranges from being normal to having brain structure abnormalities so bad that the baby would be born with one eye.  I remember thanking the Lord for allowing eliana to have two eyes..

It’s been an amazing journey  thus far, since finding out about her genetic abnormality when I was about 20 weeks into pregnancy.  We had gone in for a second trimester blood draw and for an ultrasound  to see if the baby was growing well.  Oh, and of course, to find out the gender.  🙂  First, the technician told us that we were having a girl.  🙂  I was excited, but alex didn’t look too thrilled.  But then again, alex has his normal smile on his face at all times.  Then came the bad news.  The technician had difficult time looking for things and spent a very long time looking at her heart.  After a long ultrasound session, the radiologist took us into a separate room and told us that our baby girl will be born with a cleft lip and palate and possibly a hypoplastic left heart syndrome.  When she  shared with us that  our chance of having a down syndrome or other trisomy child was about 50 percent, we decided to go ahead with amniocentesis for the second time.  The procedure was a familiar one as we had done amniocentesis with nathaniel before (the chance of having a down syndrome child with him was 1 in 16).  Because the result was normal with nathaniel, I didn’t think much of the test with eliana.  I just assumed that she would be normal too even though the radiologist had told us that there’s 50 percent chance.  Now that I think about it, it almost makes me shutter to think that God was preparing my heart since almost two years ago, to go through this process for the second time with a rather calm heart.  I remember it affecting me much more with nathaniel back then.

When the genetic counselor called me with the result about two weeks later, she told me that there was a good news and a bad news.  The good news was that the baby did not have any trisomy syndrome.  Then she told me that her chromosome 18 was stuck with chromosome 22, and where they are stuck together, 18 was missing some genes.  They didn’t know exactly how much was missing because that would require another test.  With the abnormal genetic result, alex and I had to fiercely defend for eliana’s life.  Everyone we met starting from genetic counselor to doctors not so subtly suggested termination of the baby.  They told us how families break apart with disabled children and that it would not be wrong for us to make either decision.  I repeated my answer to everyone involved multiple times until they knew that we would continue with the pregnancy no matter what.  What really threw me off was that even at the NICU after eliana was born, a neonatalogist and a cardiologist suggested comfort care for eliana rather than having surgeries to fix her heart as I was holding her in my arms.  I was speechless.

As for eliana’s chromosome 18p deletion, it turned out that she is missing very little.  She is missing three genes from chromosome 18 with seven extra genes from chromosome 22 of currently known 30,000 human protein coding genes.  It is amazing that such a minor change in human genome can create such big deficiencies.

People often ask me what I struggle with the most.  Besides little struggles here and there in daily life, I tell them it’s what’s unknown about eliana’s condition.  Because her “syndrome” has such a wide range of features, it’s hard to expect what she would be like when she grows older.  And I have asked enough specialists to find that  no one has any clue.  Certain things are known– like she doesn’t have one eye and I am thankful but I keep finding myself wanting to know more to better prepare myself.  But God seems to want me to trust Him with eliana’s development.  Because knowing more about her wouldn’t make me want to rely on Him but to go out and look for therapists and specialists to help her.  So I live day by day, praying and hoping that eliana would show normal signs of development, yet preparing myself to be not crushed when I find out that she has some major deficiencies.  So far she seems to be doing fairly well. Pray for me that I will not be anxious but to trust in God with eliana..  🙂

G-TUBE (ARRRRGGGGHHH!!! version)

This past week has been crazy around the house.  I always heard that having two little ones in diaper is hard, but I didn’t know it would be like this.  It’s not too bad when one of them is sleeping–and thankfully eliana still sleeps most of the time.  But when one or two, or even three (including me and never alex thankfully.  haha.) are crying, things get pretty wild in the house.  Ever since eliana got her G-tube, she has been very irritable.  She would wake up in the middle of her nap shrieking in pain.  Basically she’s been either sleeping or crying at home.  I’m thankful that I’m learning more about her cries and her fussy time so that I can help her better.  But this learning process feels very slow right now.

One thing that has been really bothering me nowadays is eliana’s G-tube.  Because they surgically tightened the esophageal sphincter area, she can’t burp or vomit easily.  Whenever she gets gas built up in her intestine (which is numerous times a day), she cries inconsolably.  I then try to vent her through the G-tube and tap her back for any presence of air bubbles while nathaniel is hanging on my neck or grabbing and poking eliana’s body parts.  The G-tube site also seems to bother her a lot, as she screams whenever I go near it to clean it.  There are times when I get so desperate that I would just plop down and cry with eliana while nathaniel runs around and brings me books to read.  Then I would pray, ” God, I would not wish this on the worst of my enemies.  Why then have you not only wish it on eliana but actually cause it?”  I know in my head that God is not only sovereign but good.  It’s in my moments of weakness like these that I have to fight to  trust in God’s truth and find peace in it.

I hope one of these days I will find the G-tube more useful than harmful.  I hope that day comes soon because it’s not been fun seeing eliana go through pain.  Thankfully though, she has been gaining weight so hopefully it’ll be better once eliana settles down at home with a hole in her stomach.  🙂

Home at last!

Hello everyone!  🙂

Eliana is finally home!  Actually she’s been home since past Friday but we have been so busy that we weren’t able to update the blog.  We are still busy so I can’t write much, but I just wanted to update people who have been praying for us.  Please continue to pray for Eliana’s health and development!  and also– my sanity.  🙂

Thankful,

maria

Coming home delayed.. (Maria)

I went to the hospital excited to learn how to use the G-tube yesterday  morning so that eliana can come home early this week.  When I got to her room, her nurse informed me that she is not to be discharged probably until Thursday.  I was disappointed because other personnel around the hospital told me otherwise, but soon regained joy after reminding myself that God is behind it all, not doctors or nurses.  So it seems like eliana will stay at her “six star hotel” for a few more days.  Meanwhile, I will enjoy a few more days of having just alex, nathaniel and me around the house and go shopping to places like target and bed bath.  🙂

love, maria

G-tube placed!

Hello all 🙂

Eliana got her G-tube placed today and the surgery went well.  I am pleased to say that she’ll be able to come home sometime early next week!  🙂  Praise the Lord for sustaining her life thus far!  She has many more surgeries ahead but she is done for now.  Hopefully she’ll come home and start growing and adjusting well.  Please pray that our Little Man will adjust to having her at home as well!  He still has no clue…

love, maria 🙂