A Light...

...at the end of the tunnel.

Well, friends, I hesitate to even say this, because things could change in an instant, but I believe we can finally see a light at the end of this long long tunnel.

For the past few days, my son has been drinking six bottles out of his eight feedings, and almost every time he gulps the whole thing down.  I have a feeling in the next day or two they will let him drink a bottle at every feeding and see how he does.  They need to make sure he can drink the whole thing (over two ounces) each time, and all the while still gain weight.  They don't want him expending so much energy eating that he is burning more calories than he is taking in.

In addition to that, they are still trying to get his blood pressure under control.  We were optimistic at first, because the new medication he was on seemed to be working, but since then, it has continued to be high.  They have slowly increased the dosage, and we are hoping they will soon find the magic number to keep it steady and where it needs to be.

And then?   

THEN, he gets to come home.   

THEN, he gets to meet his sister for the first time.

THEN, life can get back to some semblance of "normal."

THEN, we can begin to figure out life with two small children, 11 months apart.

It's going to be amazing.  I don't think I will ever again complain of a fussy baby.  Or a baby who doesn't sleep through the night.  Or a baby who dirty's a diaper 30 seconds after I put it on.  No, because at least they will be home, with me, where they belong.

And I absolutely can't wait.   

Mommy's Little Hero

This sweet 

 

little boy

 

is my

 

HERO.

Good News

Over the past two days, we have had some very good news!

1.  My son's renal ultrasound was all clear and everything was normal-kidneys, bladder, etc.  So there are no abnormalities, or blockage or kidney stones.

2.  Although it is still unclear what is causing the high blood pressure, he is now on a new medication which, so far, is keeping it down and consistent.

3.  Yesterday, every time my son took a bottle (three times) he drank the ENTIRE thing.  This is the first time he has done this in a 24 hour period. 

4.  Tomorrow, the doctor is going to let him try (finally!) to drink a bottle four times and see how he does.  Hopefully he will show them he really likes to eat!

Unfortunately, I still haven't gotten the video of my daughter walking loaded on my computer yet.  But I promise to try sometime soon!  What I do have, is a picture of my sweet, sweet boy in a swing at the hospital.

This and That

I know I am thoroughly delayed in updating you all as to my son's progress, and for that, I am very sorry.  We had quite a busy weekend, and I have a sinus infection to boot.  Anyway, onto the update...

He is doing well.  Although his surgery has made breathing infinitely easier on him (and his heart), recovery from surgery was a little tougher on him and took a little longer than we anticipated (seems to be a theme around here these days).  It took a bit longer to get him extubated than they originally thought, longer to get off morphine, and longer to get used to being off morphine (he had to be on another drug-Ativan-to help calm him from agitation from no longer getting the narcotic).  But he seems to be doing much better as far as all of that is concerned.  He's happily breathing room air with no issues at all, and only gets Tylenol if he seems to be in pain.

Now, however, it seems we have a new hurdle.  He has been struggling since his surgery with high blood pressure.  At first, we assumed it was because he was in so much pain, as well as a result of his body adjusting to a now closed ductus, and all the blood flowing the way it is supposed to.  He has been treated with blood pressure medication, however, and it does not seem to be doing the trick.  It will bring it down for maybe a few hours, but ultimately he needs medication again later in the day.

Today, the doctors did an ultrasound on his kidneys to see if there was anything going on to cause the high blood pressure.  Apparently, high blood pressure can be related to problems with the kidneys (a problem with blood flow or some sort of blockage), so the doctors are checking those first.  Also, a blood pressure specialist (I'm not sure what their official title is) is going to be checking on him today.  So hopefully in the next day or so we will have some answers, and can resolve this issue for him.

He is still only getting a bottle three times a day, and so far hasn't been too consistent with his eating.  Sometimes he gulps down the whole thing, other times he will only drink half or so.  But I have been able to start working on breastfeeding again now that he is recuperated, and today he did fantastic!  So I'm feeling very confident that he will be able to do it when he gets home.

In other, totally unrelated news, MY DAUGHTER STARTED WALKING LAST NIGHT!  She has finally overcome her fear of letting go, and walked about three feet back and forth between me and my husband.  I got a little of it on video, which I will be trying (very hard!) to figure out how to post it later tonight (wish me luck!).  My husband, unfortunately, only managed to tape the kitchen counter.  So it's not very much that we actually have on camera, but maybe we can get some more footage tonight. =D

Whew.  Well, I think that's all I got!  Thank you for your concern and prayers for our little boy and family!!  

99 Balloons

What a beautiful, amazing reminder of how blessed I am.   Although we are at day 80 in the hospital, and today was my baby's due date, and I am so very tired and weary, my baby is healthy.  He is strong.  He will come home (eventually) and join our family with minimal health concerns from here on out.  And so I have to share this video.  I feel so grateful that God has taken care of our beautiful boy.

Prayer

Prayer is a pretty important part of the Christian walk.  Scripture is filled with passages imploring brothers and sisters to pray-for one another, for our needs, for healing, etc.  We are even given a model for how to pray from Jesus Christ (Matthew 6:9-13).  I am not going to break down the Lord's prayer today, or discuss all the different things we should or should not be praying for.  No, I simply want to discuss the habit of prayer in our daily lives.  (Keeping in mind, of course, that I am by no means an expert on prayer, nor is this the complete authority on prayer.  Scripture has much more to say than this, and I would encourage you to check it out!). 

I have simply realized lately just how lacking my own prayer life is.  Yes, I pray for my son, and my family and our needs.  And I try to pray for others in our church family who are hurting.  But how much time, of the 24 hours in a day, do I actually spend in prayer?  How many times do I smile at a friend and say,"Well, I'll definitely be praying about that for you," and then actually pray for that individual?  How often do I settle down to pray, only to get distracted, and instead start checking things off my mental to do list, or thinking about the errands I need to run, or what I'm going to cook for dinner (ok, so I don't really cook much, and it's not very likely that I would be thinking that far ahead, but you get the idea)?

So I have been thinking about this a lot lately, and who knows, maybe it's just me, but this is something I seriously need to work on.  The question that comes to my mind, then, is just how much of my time should be spent in prayer?  I mean, I am one busy woman.  I have a one year old at home, a (almost) three month old in the hospital, commitments at church, a house to keep clean...I could go on and on.  As I carve out those oh so precious time slots in my day for the many things I need to accomplish, how much time should be devoted to prayer? Just one long prayer session first thing in the morning?     

"Listen to my voice in the morning, Lord.  Each morning I bring my requests to you and wait expectantly."  Psalm 5:3

Of course, when I wake up is a great time to spend with God in prayer, but surely we should spend more of our time than that.  Maybe when we sit down to eat a meal.  That's always a good time to pray, right?  Then you can fit in three prayers a day.

Ok, so I have to be honest.  I'm not really trying to quantify my prayer life, or pencil it in to my date book whenever best suits my schedule, i.e. when my daughter is napping and all chores are done.  But scripture does answer the question, "How much of my time should be devoted to prayer?"

1 Thessalonians 5:17: "Pray without ceasing."

Pray without ceasing.  Or, in other translations, "Never stop praying," and "pray continually."  That's quite a tall order!  We should be praying all the time!  Obviously, this does not mean we should spend literally 24 hours a day knelt down before an alter, eyes closed, head to the ground (although quiet moments away from the hustle and bustle of life certainly have their place).  We have to live our lives.  But as we live our lives, we should be conversing with God.  Praising God.  Thanking God.  Asking questions.  Asking for guidance as we go about our day.  Prayer is not a chore to check off our list, but rather, a continual conversation with the Lord, that should be as natural to us as breathing.  What kind of impact would that commitment have on our personal walk with God?  On the body of believers?  On the church in America? 

This kind of prayer life certainly takes some getting used to.  And believe me, I am speaking to myself first and foremost!  But if you are committed, and pray that the Holy Spirit would guide you and give you a desire to draw closer to the Lord in prayer, it will become more natural.  I have also found a prayer journal to be an invaluable tool.  Sometimes I write out an entire prayer, sometimes I simply make note of prayer requests that I don't want to forget.  But either way, it helps me stay focused, and held accountable for the things I need to be praying about.  It is also a GREAT way to see God answer prayers.  There have been times in my life when God answered a prayer, and I didn't even realize it until I went back and read a previous prayer request in my journal.

Today, my prayer is that we would get back to prayer.  That it would become a habit so ingrained in our lives, we would pray without ceasing.  That we would take seriously our prayer life, and recommit to keep our thoughts focused on God and his marvelous plan.  That we would spend more time talking to God, and less time on the things that only distract us further.  Please feel free to add any specific prayer requests to this post, as I would like to commit to pray for you and your needs, as you all have so faithfully been praying for me and my son.  Thank you!