Currently

The doctors and nurses are saying that if necessary, they can send the family home with the little Striderling on a feeding tube and oxygen. His parents would rather not have to do that, and Mom feels especially intimidated by the feeding tube, but it is a possibility. Meanwhile, they are still working on getting his feeding moved from tube to bottle. He ate 14% of his food via a bottle yesterday, the rest from a tube as usual. About half of his food comes from Mama's milk, every drop of which is a fabulous and incredible gift from his mama and from God, who designed it so that this food is perfectly tailored to this baby. They give him more than a newborn would typically get because he's burning so many calories breathing and trying to eat. He gained some weight the night before last. He didn't gain yesterday, but more importantly, he did NOT lose any, even though they annoyed him greatly by doing more tests and x-rays which he hates, which means he burned extra calories. It's really, really not okay to let him cry, he cannot afford the calorie loss.

'Cry it out' parents keep this in mind- your babies are burning loads of calories when they are 'crying it out' which means they need to eat more and sooner than they would have without the crying it out. If you must let yours CIO, be sure to make up for the lost calories.

Oxygen on his own is on his time, and God's. Thankfully, we know that the effective fervent prayer of a righteous man availeth much (James 5:16), and we know a lot of righteous folks are praying.

He has been diagnosed with a medical condition that affects 1 in 100,000 to 130,000 children. What does that mean? Well, Down Syndrome affects 1 in 800 to 1,000 children. There is no single blood or chromosome test for the Striderling's from of bone dysplasia, it's a clinical diagnosis based on a variety of symptoms- he has some, but not all of them. Regrettably, the rib cage size is one of them he has, and the reason for the diagnosis. It is generally not detectable in the womb, unlike Down Syndrome. We discussed this recently, my daughter, her mother-in-law, and I, and decided this is a good thing. Testing in the womb has not been a blessing for Down Syndrome babies, it has been a death sentence (and a death sentence as well for the thousands of perfectly 'normal' babies who slip through the large screening and are misdiagnosed as Down Syndrome babies, and thus aborted). My daughter shuddered and looked at her baby when I pointed out what in utero testing has meant for Down babies, and said fervently that she wouldn't want that. The whole reaction was so visceral, so instantaneous, and that look so full of love- it is such a joy to see new mothers loving on their babies, all the time, and it is especially joyful when it is your daughter.


The medical staff in the NICU (and have I mentioned what a blessing this NICU has been? Amazing staff, wonderful environment for a NICU) explained that his parents have to be very vigilant to guard against respiratory issues in his early years, which means no church attendance for him- they suggest for the first year. They also say that kids with this form of bone dysplasia fight respiratory issues in their early years and then to watch him for kidney issues in his teen years.

This, oddly, or not so oddly, made my heart sing. "In his teen years...."



Amanda Witt on Prayer:

Many years ago a well-meaning relative was trying (and failing) to persuade Jonathan and me to join him in a sort of Amway-type endeavor.

He said, "I know you like to help people. If you'll go in with me on this, you'll be able to help more people. In fact, you'll be able to trade five words for five different ones."

He held up his fingers and counted. "I will pray for you," he said, "Will become 'How much do you need?'"

"God forbid," I thought then, and still think today. God forbid that I ever rely on my bank account instead of on God.

Many of us are frustrated, knowing how much help is needed by the victims of the hurricane, knowing how comparatively little we can give. Let us give with our material resources, certainly. But please, let us never sell short the meaning and power of prayer. The Lord of All has infinite resources. He can provide, though our purses are empty.

And He can provide far more than money can buy.

The many prayers from people around the world have been a great source of comfort and encouragement to all the Little Striderling's family.

Amanda Witt is also where I found the following:

A lecturer to a group of businessmen displayed a sheet of white paper on which was one blot. He asked what they saw. All answered, "A blot." The test was unfair: it invited the wrong answer. Nevertheless, there is an ingratitude in human nature by which we notice the black disfigurement and forget the widespread mercy.

--Buttrick, Prayer

Mercies:
the Striderling
Every breath the Striderling takes. Every breath any of us takes.
Fabulous midwives
wonderful, on the ball son-in-law who remained cool and calm and got the ambulance called and directed competently to his not very easy to find apartment with both poise and alacrity.
Nurses who know when to follow protocol and when to be flexible
The HG's wonderful in-laws
Private NICU rooms with private bathrooms
formula
feeding tubes
oxygen tanks
volunteer paramedics who take time to go up to a new father and say things like, "I am the father of five. I can imagine how you feel."
The internet, so I can email my girl instead of calling and possibly interrupt feeding, pumping, or napping times.
Cell phones that can be there when she wants them, and turned off when she needs to nap.
friends and family who pray, pick up the slack, don't take easy offense when you can't take the time to call, and who send emails and messages without expecting replies

I know there's much, much more.

On Prayer:

We do not pray to tell God what he does not know, nor to remind him of things he has forgotten. He already cares for the things we pray about; his attention to them has never flagged from the beginning, and his understanding is unfathomable. He has simply been waiting for us to care about them with him.

When we pray, we stand by God and look with him toward those people and problems. When we lift our eyes from them toward him, we do so with loving praise, just as we look toward our oldest and dearest friends and tell them how we care for them, though they already know it.

--Tim Stafford, Knowing the Face of GodKnowing the Face of God: Deepening Your Personal Relationship with God(page 59)

Pray continually.

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Update- The Striderling came home on oxygen and with a feeding tube in his stomach after 41 days in two different NICUs. He gets speech, physical, and occupational therapy, as well as multiple regular doctor visits all month long. The doctors said he really shouldn't be out and among people for hsi first two years, then they said first year. At five months of age he is doing so well that they are discussing weaning him from the oxygen and say he can go to church once in a while during summer and spring months, just don't pass him around, and keep him home during RSV season.

We add updates to the side bar on the left regularly.

Also:

Life is a Snowglobe