Wednesday, November 2, 2011

The Gospel of Grace Demands More

I've been pretty pensive these past few weeks. I usually am pretty introverted and introspective. I think about myself too much I suppose. But I've had a lot to process and I've felt things more deeply than ever before.

I've seen in my life over the past decade as I've learned to walk with God that every season keeps demanding more faith. Transitioning from college to the work-world, finding myself in my 20's and trying lots of different roles and skills in ministry, being married, transitioning to a new geographical places, and now being a parent.

As I've processed the lordship of Christ, and wanting Jesus' worth to be preeminent in my life lots of areas are continually called into subjection of the gospel of grace. Am I walking in a manner worthy of the gospel. Does my life reflect this beauty? Is comfort or control too important to me?

These past 3 months have required more from me at times than I thought my heart could bear. As much as I want to be a father of a healthy son, this is not my ultimate hope. I have never wanted something so much. I have never prayed so hard. And yet again, the gospel of grace offers something more and something better. As I wondered what this outcome would be and sat in the middle of a balance between despair and hope, my heart had a ballast of an ultimate hope. Harrison would be okay no matter what because of a Better Father than me was holding him. And Christ did become a shield to my wondering, fearful heart. He wept with us in our uncertainty and fear in the hospital. But I believe he weeps even more over my sin that keeps me intimacy with him at bat. And he provides a way where my wondering heart does not have to wonder.

I wrote about this before but one of the early Sundays when we were broken over Harrison's condition and our lives were riddled with uncertainty I tasted of the benefits of the gospel as I had never before. As my heart broke over wanting to be Harrison's dad, and not knowing if that would be a reality in the future, my heart began to rest in the satisfaction of Christ. The feast where one day the love of this Better Father would be celebrated over a feast of his Son and His bridegroom. All wondering will cease. All striving for something better will be satisfied in this Person. And my heart began to rest and be satisfied in this hope of this great Christ.

I've walked beside enough older people to see that the challenges of life are many and are complicated and cause our hearts to be subject not to what we love but what God loves. This fallen world tastes bitter and hurts. I hope its not too soon to quote a Christmas song. But one of my seminary professors was right. Joy to the World is probably the most theologically driven and poignant hymn that displays Christ. The third stanza in particular I want to highlight because this is what I'm talking about. Every faith stretching event and crisis press us deeper into the reality of the story of the gospel of grace. Our identity is secured not in what we accomplish, but what Jesus accomplished for us. May our hope rest in this Person. And may the beauty of this hope rend our hearts from ourselves and call into further obedience that he demands from us.

Joy to the world, the Lord is come

Let earth receive her King

Let every heart prepare Him room

And heaven and nature sing

Joy to the earth, the Savior reigns

Let men their songs employ

While fields and floods

Rocks, hills and plains

Repeat the sounding joy

No more let sins and sorrows grow

Nor thorns infest the ground

He comes to make His blessing flow

Far as the curse is found

He rules the world with truth and grace

And makes the nations prove

The glories of His righteousness

And wonders of His love

Thank You

We send out a periodical newsletter to our supporters and friends who make our ministry possible with CRU at UNC-Chapel Hill. We call the ministry here Cornerstone. Here are our last few mailings to document the past 3 months.

We are thankful for so many wonderful people around us who have loved and supported us.
As we begin life out here as parents, it is hard to not remember all that was required to get us to this point. Thanks for being the hands and heartbeat of Christ to us as we have come through such a stressful season. We have felt so loved, connected and encouraged through your compassion and prayers.

Sunday, October 16, 2011

Day 79- going home

We have felt a wide range of emotions today. Right now I'm so tired its all pretty numb. I've cried on about 5 or 6 occasions today. Mostly pure joy. I can remember days when we were driving into the crowded parking lot, riding a smelly elevator full of weird people, and walking down that hospital and deep down my heart just longed to be home, lying in a bed with my son and wife and being with them without any stress.

Oddly, today we were really sad for this chapter to be ending. We've met and been around some amazing people out here. The primary nurses that have been working consistently with Harrison have become very dear to our hearts. And we cried a lot as we said good bye. We are so grateful for their compassion and hard work to care for him and us so consistently. They have taught us everything to get us started and have been so encouraging. I have thought time and time again about Ps 78:72 as I have watched God provide through these nurses. A faithful heart and a skillful hand nurtured Harrison. And I am in debt to these miracle workers.

There is also one particular family we've gotten really tied to out here as well. Jeff and Kristen (a couple we met at church here) have opened up their home and lives to us. They have been such a bright spot in this season. Outside of the hospital and everything positive happening with Harrison they and the church we got connected to out here were more life giving to us than anything.

We are sad, we are excited and we are also pretty scared. Embarking on the journey of parenthood tomorrow. No more monitors, no more nurses, no one to rely on but our own intuition. Well people have been doing this for thousands of years and succeeded generation after generation with a lot less than we have. But this is still about the most intimidating thing I've ever done. As my brother Abe put it earlier today, we are walking the tight rope with no safety net.

Well Jesus has gotten us this far, and I don't think he is going anywhere.

Thank you for your prayers that have gotten us this far. The journey begins in a few hours.

Sunday, October 9, 2011

Going home sometime soon...?

We have begun to have conversations with nurses and doctors regarding going home. The expectation all along is that we will be here thru his due date, October 24. If we get to go home before that it is only better. Sometime about a week ago an attending doctor instructed us to drive home and not fly. Primarily, for Harrison's sake due to cold and flu season being in effect since it will be late October. (Oct-Apr is cold/flu season, get your shot today.) As well, since we have our car out here and its an option we were told to just do that.

In order for Harrison to be able to leave he needs to be taking all his feeds orally (he is getting the rest through his feeding tube). He is currently somewhere around 65%. Once he gets to 100% feeds for a day or two they will put Harrison through a series of tests he needs to pass.

-He will need to do a room-air challenge. For 45 min his performance will be monitored without any O2 assistance. He will need to be able to maintain his O2 saturation at a certain level.
-He will have to pass a car seat challenge. He will need to tolerate sitting in a car seat for an extended period of time and his respiratory ability can't be impeded.
-He will need to be Brady free (Baby-apnea) for 5 days.

Mom and dad will have to pass a test too. We will need to watch Harrison in the hospital for 24 hours in a family room. The nurses will want to see that we will be capable to care for him, give him his meds/vitamins and feed him.

If all this goes successfully we will be discharged and on our OWN! We are pretty thrilled and pretty scared at the same time. With the best babysitters on the planet and 24 hour care and monitors letting us know exactly what is going on, it will be a stark contrast. Our first car trip with Little Man will be 1700 miles, a little daunting by our standards. So with all the anticipation and excitement comes some concern and anxiety. But I suppose every step of parenthood is a chaotic tandem of emotion.

Harrison continues to do really well. We found out earlier this week that the tiny holes in his heart are completely closed on their own. The PDA and VSD are done and we don't have to look back. He weighed about 4# 11oz last night. He is waking up on his own when he is hungry and telling us what he needs. He keeps maintaining his increasing feeds as he gains weight. And his lungs are doing awesome. He is periodically having Bradys but they are fewer and he is recovering faster from them.

The thought of saying good-bye to Harrison's primary nurses that we have developed a relationship with makes us sad. But one of the nurses said you are gonna walk in here and we will have to kick you out, so get ready! It's all up to Harrison, and it could sneak up on us faster than we are expecting. And the thought of home is a little more powerful than saying goodbye.

Ronald McDonald House
Several people have asked if we need anything. We really are in good shape in terms of food and gift cards. We have been directing people who ask toward our stay at the Ronald McDonald House. We need to pay $20/day for our time in the house. We have been blown away at the generosity of so many, and it's pretty hard to put this up. But if you would want to help in any form or fashion with that email me, and I can get you the details on how to make that happen.

As well, I would add if you mail anything after Oct 20, send it to our address in NC.
1005-G Kingswood Dr.
Chapel Hill, NC 27517

Prayers for us:
-Pray that Harrison or us don't get sick.
-Pray for all the details, with packing, becoming parents, traveling come together as we think through the transition.
-Pray for Harrison to continue to gain weight and get stronger everyday.

This whole experience has given us new perspectives on life. While we have been stressed out of our minds, and anxious beyond human recognition, at the same time, we have been overwhelmed by the love of Father and seen His care for us through skillful hands and gracious hearts of so many. Thank you for walking beside us in this season.

Stay tuned, cause the ride is just about to start!


Monday, October 3, 2011

The Father's Voice

One of the most intimate moments we've had with Harrison time and time again is when he hears our voices and responds. From the beginning early on he obtained a recognition of our voice talking to him.

I still have a vivid memory when he had an infection and we couldn't touch him cause it wasn't his care time, but we scooted chairs up next to his isolate and just spoke to him, rooting him on, praying over him. And shortly after I began talking he opened his eyes and looked at me even through being tired and sick. This melted my heart as he responded to my voice. His heart rate lowered into a more relaxed state and his O2 saturation increased.

One of my favorite moments is being able to hold him to my chest. He hears my heartbeat and I can only imagine how loud my voice sounds like as I hum songs to him. He gets so happy being right there hearing my voice and is so comfortable.

The floodgates of metaphors of God the Father loving us have blown open since Harrison has been born. I see this love in HD in new ways now that I am a dad. But this metaphor of the Father's voice has been very consistent to me over the past few weeks as we've walked through this with Harrison.

God's Word has been a source of life to us. It has been a ballast to my soul and reminded me what is true as waves of life have crashed against us. And caused us to treasure Christ more as we enjoy the sweet benefits of the gospel.

I share what is below as a bit of praying that I do occasionally. There are so many things that vie for our attention in any given day, many of them are good things. Sleep and SportsCenter are pretty constant distractions in my own life.

So I find myself praying through these verses for my own heart that I would be intentional and pursue the Father's voice. I am straight high-jacking this from John Piper's ministry. It is a useful acrostic he created to think through and just pray out loud in my own life. I've past it along to others I've worked with in discipleship.


I- Incline
Incline my heart to your statues and testimonies and not to selfish gain. Ps. 119:36

O- Open
Open my eyes that I may behold wondrous things out of your law. Ps 119:18

U- Unite
Teach me your way, O Lord, that I may walk in your truth; unite my heart to fear your name. Ps 86:11

S- Satisfy
Satisfy us in the morning with your steadfast love that we may rejoice and be glad all our days. Ps 90:14

May the Spirit cultivate in us a healthy desire for the Father's voice, and would we listen and be satisfied in its promises that are true.


Friday, September 30, 2011

2 mo. old!!

Today we celebrate 2 mo. with Buddy! He is continuing to surprise us with his growth and development. He has more alert moments, and feeding more through nursing and bottle. I think he is somewhere around 40% of his feeds he is taking without a feeding tube. He needs to be at 100% before he can go home.

Last night as we were about to leave a doctor pulled us aside and wanted to have a conversation with us about something they had recently learned in this week's blood work.

Harrison's new born blood screening showed a barely normal thyroid hormone level. It warranted another screening at 8 weeks. So they learned that his thyroid hormone level is in the normal state. This is very, very good news. Up to this point he has not missed a beat. Everything that the thyroid does and tells other systems to do has been happening. He is growing and everything in his endocrine system is clicking.

The one number that was off was his Thyroid Signaling Hormone (TSH). TSH basically stimulates the thyroid to function and keep functioning. Harrison's TSH level was high. High enough to address immediately. He will be taking a synthetic thyroid hormone that will lower this number to help re-calibrate his body. This is one pill per day. And he will need to take this pill for the first year of his life until he is mature enough to come off of it, and see if his body has re-calibrated and okay on its own.

We have been affirmed that he has not been effected developmentally because his thyroid hormone is normal and functioning and will not be effected developmentally because they are treating him. Had they not caught this they would be concerned.

They are attributing this TSH # being off solely due to his prematurity and nothing else at this point. In a year we will re-evaluate with a pediatrician and endocrinologist.

This is definitely something to pray about but we are comforted by the nurses who know Harrison and think that based on all his great progress and development they don't think its anything significant.

Worst case scenario he takes a pill a day for a long time. Best case scenario he takes a pill for around a year.

Another great thing is today he was put on the low-flow cannula. The least amount of respiratory assistance. He has been doing great the last 2 weeks on the cannula and they have been lowering periodically his pressure the past 2 weeks. Today he is basically receiving O2 with no pressure. He will continue to be on the low-flow through his stay and we have been informed he will probably be on O2 until he reaches sea level at home.

Happy 2 mo. Buddy! We love you.

Tuesday, September 27, 2011

For They Shall Be Comforted

A few weeks ago Miles, our director at UNC, asked us to film a short video of ourselves he could use in a talk at our weekly meeting. Cornerstone at UNC is going through a series on the Sermon on the Mount in Matthew 5. It was a great way for us to make a contribution, process what we are learning, and introduce ourselves to new students.

Here is the end result...

Monday, September 26, 2011

Pictures from the past few weeks

From Three to Four Pounds

Well, he did it. We are pretty amazed. 58 days later he has gained 2.5 pounds to round out to an even 4 pounds.

Erin had a good long hold with him tonight and daydreamed with him about going home.

It took him 15 days to go from 3 to 4 lbs. This went really fast. A few more weeks and maybe another pound or so and we might be out of here. It is pretty ridiculous to see so many steps of progress he has taken.

Saturday 9-10: Turned 6 wks old, 33 wks gestation.
9-11: 3# and came off the CPAP mask onto the nasal cannula.
9-12: Nursed for the very first time with Erin.
9-18: 3# 9oz.
9-20: 3#10 oz.
9-23: 3# 12oz. Took his first attempt at a bottle. And in 15 min he tagged a full feed 33ml or 1.1oz.
9-24: 3# 14oz Turned 8 wks old 35 wks gestation.
9-25: 3# 15oz
Today 9-26: 4#!! Moved from his isolate to an open air crib.

He has been eating in 3 ways since last Friday. Nursing with Erin, taking a bottle, or through his feeding tube. It is based on his cues and how alert he is when his care time shows up. All premies go home bottle feeding, because we won't be able to know how much they obtain while nursing.

We are pretty excited about his progress and hopeful for the next month to go quickly.

Wednesday, September 14, 2011

Harrison Cole Smith

Many have inquired about the origin of Harrison's name. It took us about a month or longer to settle down on a few finalist in the process. Naming your child was harder than I thought it would be. Especially with the last name Smith. Had to be original and different. Couldn't be Joseph or William. Both liked by Josh and both taken.

We both really liked it from the beginning. Neither of us had any direct affiliation with a Harrison we just liked it. So no, Harrison Barnes isn't a direct influence and we will probably have to fight that off until after the Tar Heels win the championship next April.

Basically, we just liked it a little more than a few others. What sold us on the name was when we were having a conversation over dinner in KS last June. The topic came up and my dad informed us that Harrison was a family name on his mother's side. I have 2 older brothers and they have 3 boys between them so all the immediate male family names had been taken. My dad went on to tell me that his grandfather was named Henry Harrison Starkey. Sold.

So we landed the plane on that name real quick after we learned that fact. Shortly after we found some documentation in my dad's files.

Here is a small section of a 5ft document of my family tree on my maternal grandmother's side. My father is Quentin Smith. Not sure why JOSH is in pencil and Abe and Ben got left out there. Sorry bros, ask dad about that one.

And here is a pic of Henry Harrison Starkey with his bride Anna on their 50 year anniversary April 24, 1960.

Cole is a derivative of Erin's maiden name Coltrane. We loved that name too and thought it was very fitting middle name. And it sounds great.

Harrison Cole Smith we are grateful for you.


Continued Steps of Growth

The days are really long, but the weeks are going fast. Last Saturday Harrison turned 6 weeks, 33 gestation. A lot has gone on the past few weeks and all of it good. We've had visits from Erin's mom and Josh's folks. And tomorrow Erin's dad is coming.

Last Friday September 9, Harrison went from the CPAP mask to the High-Flow nasal cannula. It's a regular clear tube that you would see an adult would wear. He has been very stable and comfortable on this. The cannula falls second on the tier of respiratory assistance.

1-Low-flow Cannula - no additional pressure, only mixed O2
2-High-flow Cannula - small amount of pressure with mixed O2
3-CPAP- substantial amount of constant pressure
4-Si-PAP- substantial amount of constant pressure, with pulsating bursts, with mixed O2
5-Ventilator Intubation - tube installed in trachea breathing, completely breathing for patient.

This is the ladder Harrison has climbed. Over the last 3 weeks Harrison has gone to the High flow cannula from the ventilator and has been showing great signs of strength and growth. Prayerfully, he will continue to progress and only need a little mixed O2 as he continues. Today they lowered the pressure by 1/4 the strength to ween him some and continue to encourage him to do more on his own. He will probably be on low flow until he leaves the hospital. It is likely he will need assistance until we descend from altitude.

Another exciting sign of progress is that Harrison has been eating like a champ. One of the nurses told us, generally speaking, a pre-mie usually has digestive issues or respiratory issues and rarely both. If the doctors and nurses could pick they would want a baby to have respiratory because over time the lungs do develop. But if a baby doesn't eat, or can't digest it obviously makes it very difficult to grow, develop and gain weight. So Harrison has needed help breathing but he is getting stronger in this area. We are glad he has a Smith appetite.

Monday Harrison actually nursed with Erin for the first time. It was a trial run and we did it simultaneously while he was being fed through his feeding tube. He goes as long as he can, usually until he falls asleep which is about 10 min. But it was a huge success!! Nurses were so impressed since he is only 33 wks. And they say this is huge milestone, because he may be able to go to a bottle or nurse sooner and consequently gain weight at a quicker rate.

Harrison needs to start producing his own red blood cells. Last week, his hematocrit was 27. Just on the edge of being normal. So they didn't transfuse him or give him any epogen shots. They want to see if he can do it on his own. This week he has not shown any signs of being anemic. Good color, good O2 saturation, and not laboring too hard while breathing.

We haven't had a bad night since the night he went on the ventilator several weeks ago. It's been a steady rate of progress. We just want him to keep gaining weight. Last night, he was 1405 grams or 3lbs 2 oz.

He is doing great and we don't want to get too far ahead of ourselves. We've kind of had 34 weeks in our mind as a goal to reach because doctors feel comfortable delivering a baby early if there are any complications in-utero. So we are almost at that point now. All his vitals, head ultrasounds and blood work has been really good.

Please continue praying:
-Weight gain
-Progress on nursing and bottle feeding.
-Good respiratory development and strength and that there would be no set backs in this area.
-That his hematocrit (red blood cells) would develop on his own.
-Our attitudes and homesickness as we continue on for potentially 6 more weeks.

Josh and Erin

Sunday, September 11, 2011

Day 43 and 3lbs!!

Lets get some weight on that length!

Momma time - 1

Momma time - 2


Granny Smith time - 1

Granny Smith time - 2

Granny Smith time - 3

Extreme Close-up. Probably Josh's favorite picture yet.

Momma Time - 3

At certain points in the day we catch him so alert!

I guess it's official.

Friday, September 9, 2011

Wednesday, August 31, 2011

Off the Respirator

Yesterday at 1230PM Harrison's respirator tube was removed! He has been on the respirator since last Thursday and has been resting and doing very well while on it. A few days after he was intubated last Thursday, he began breathing over the ventilator and needing it less and less. Sunday through Tuesday it was very difficult to keep his hands off the tube. This was one sign among others that they are looking for when a child is ready to come off of the ventilator. He was trying to pull it out and saying "I don't need this anymore, get this thing out!" One of our nurses joked that he needed to get some baby handcuffs to keep Harrison from grabbing it so much!

Here are a few pics of his face without anything on them! In between the ventilator being off and the CPAP mask on.

Now he is on the CPAP and all day yesterday was very consistent in his numbers and looked like he was doing really well. He is adjusting back to the mask and it may become bothersome over time, but as of now he seems to like it more than the tube in his mouth. Yesterday Erin got to hold him for about an hour and he did great. It's a lot easier to hold him with that respirator out!

There are two things I haven't mentioned yet since last Thursday after all the drama. The doctors wanted to run a series of tests to see if any of his problems last week had anything to do with an infection. They did several blood tests, a blood culture, and a urine culture. Everything came back fine except his urine culture came back with a bug. So they did another urine culture a few days later to determine if it was a false positive. They determined he does have a urinary tract infection (UTI), although he has never acted sick or looked sick. So they began giving him some powerful broad scoping antibiotics to get after any possible infection aggressively. They want to catch something early if there is any chance of him being sick. And from what we have understood a UTI can seem dormant for awhile and then have some significant effects very quickly on a person his size and age. All the while he really hasn't acted or looked sick. And from all the positive affirmation from the interaction with nurses its been really hard to believe he is sick at all. He'll be treated with antibiotics for 7-10 days and he's about 4-5 days into it so far.

The other bit of news was that after all the drama last week they began to hear for the first time Harrison has a very soft, faint heart murmur. When they did his ECHO ultrasound shortly after his birth they discovered a normal reality for a premie Harrison's age. There were 2 small holes in his little heart, one on his aorta and one between his ventricles of his heart. These openings are for 2 small vessels to pump blood from the heart directly to parts of the body bypassing the lungs. One is called a PDA (aorta) and one is a VSD (I think) (ventricle). As a baby grows in utero these holes get smaller as the lungs develop and begin to circulate blood to the lungs. Often these holes close on their own without any assistance as a baby grows outside the womb, but there is a chance he may need medicine to correct or (less likely but still possible) surgery. They will just keep an eye on it to see what happens as he continues to develop and grow. He is going to have another ECHO ultrasound later this week that will be able to show what exactly is going on and any changes that might have happened as he has grown.

The good news is through all this, his heart is really operating very well and it seems like neither of these murmurs are effecting him at all. His O2 needs are very normal, his blood gases are great, and he looks and acts very healthy and normal.

Some prayer requests:
-Pray for the results of this ECHO ultrasound that will happen within the next week. He will get one for his head and heart (both routine ultrasounds they do around 31-32 weeks)

-Pray these antibiotics would help him out and rid his system of anything harmful.

-Pray for our anxious hearts as we balance all this news and take it one day at a time.

-Pray for him to gain strength and grow as he begins to breath more on his own on the CPAP again.

Thursday, August 25, 2011

Last Night

Harrison is doing very well today. And even though he had a rough night last night, last night was a lot harder on us than it was on him. Today he is comfortable and resting, and our hearts are in a knot.

Yesterday we left him at noon and everything was great. Erin held him and he performed really well feeding and being held. We left in great spirits as the last week has been pretty consistent and progressive for him.

About 745P while we were on the way to see him for his 8pm Care Time and I got a phone call. It just says, "Unknown" on my phone when the hospital calls and its always a nurse or a doctor giving us an update. These are always a little unnerving, and will continue to be.

So our nurse called to inform us of some changes and that Harrison was fine, but that he was breathing harder and for longer stretches of time than he usually had. They wanted to give him some rest and help him out. She explained that he was going to go on the SiPAP, the pulsing CPAP, to help him breathe.

When we arrived another nurse stopped us at the NICU desk to keep us from going in to see him. She let us know they decided to intubate him back on the respirator and that it may not be a good time to go in to see him. This was so alarming! He had declined so rapidly our hearts just dropped. We were so upset because it wasn't what they had told us on the phone initially and it was very scary because we left him at 130 and everything was fine.

We eventually walked back to his bed and there was about 8 people around him working on him. We saw him on the SiPAP but he was not responding very well, so they were preparing him for the respirator.

We stood around and listened to doctors in a daze and unbelief. Just 8 hours before and for several days in a row he seemed to be doing so well.

We eventually had to leave because it was just too much too soon and the doctors told us they would call us. That 90 minutes until we returned were filled with the most gut wrenching stress we've felt so far. We felt so confused. We didn't want to leave, but we didn't want to stay either.
So leading up to this point Harrison had been showing signs of strength and performing well. Sporadically, throughout the last week he had signs of breathing very quickly to keep his O2 saturation up. But he would pull through and his numbers would return to a normal level. Doctors kept waiting because of his signs of strength and fortitude to do well on his own.

Over time his lack of muscle structure hasn't been able to keep filling his lungs completely. In turn as less of his lungs were being utilized they slowly began to close. As they slowly closed, less of his lung volume was being used even on the CPAP. Consequently he had to breathe faster and faster to keep up with less lung volume. For an extended period of time he was breathing 100 times/min. And his heart rate was screaming over 200/min. They want him to be around 40-60 breaths /min and his heart rate at 160-170. Seeing all that effort he was pouring out doctors thought it best to intubate him and let him rest for several days. He was absolutely exhausted after all this work.

So last night Harrison pretty much said, "Listen, I'm really tired and I need some help." And the doctors gave it to him.

We decided to stay a night in a family room in the hospital to be close to him and check in on him periodically throughout the night.

Almost immediately he was comfortable on the ventilator and very stable. They drew blood labs to find out if the quick retraction had anything to do with an infection and to check his red blood cells. He has no infection but he has become anemic over the last week. Something we suspected from his symptoms over several days. This is very common among pre-mies.

So he has received 2 blood transfusions to increase his red blood cells. That means more cars to move more oxygen on the highway, which in turn means his body will be less stressed to oxygenate. Smoother breathing and slower heart rate. So he is very comfortable today and his color looks great. All his blood labs came back very positive showing signs his body is functioning normally and we can assume his decline was attributed to exhaustion. His blood pressure and heart rate are both very good.

As Harrison rests and recovers from his rough night our hearts are really anxious today. We have limited perspective on this ride and had no idea what this would be like. They told us it would be a few steps forward and a step back, but the way this went down was next to terrifying for us. So we are still really scared and emotionally exhausted today. Doctors have been very encouraging and informative to let us know that to go back on the respirator is very common with babies his size and age. We feel like it is a step backward, but it is really the best possible thing for him as he continues to grow and develop. He will continue to climb the ladder as soon as he gets some much needed rest.

Last night before we went to sleep, I was quoting Psalm 23 over Harrison and us and stillness and peace gave us both some sense of security to help us be able to sleep. But it was restless night. And today as we've received more good news and updates, we still are very wary as we enter the hospital each time.

Pray peace over our hearts and that Christ would be our shield as we walk into the NICU.
Pray for good counsel and informative relationships that will help us have appropriate expectations as we continue on this journey.
Pray for our marriage as we lean on each other and encourage each other to think about what is true, and not about the "what if's".
Pray for a tenderness toward the Lord and a steadfastness on his promises.
Pray for Harrison to recover and his body to be rejuvenated and strengthened as he takes a break from so much work he has been doing.
Pray Christ would protect his little body and fight for Harrison and with him as he recovers.
Pray there would be no long-term consequences to the quick nature of last night's events.

We love you, and are so grateful for your encouragement and prayers.


Wednesday, August 24, 2011

In Mom's own words...

Well it's been almost 4 weeks so I guess I should finally do a blogpost of my own. I'm so thankful to Josh for taking over the blog and keeping you all up to date on how we're doing in Denver. To be honest, I haven't felt like blogging. It's been very hard to know where to begin- what would I even share? To say that this has been the most overwhelming and emotional time in my life would be an understatement. Our nurses in the NICU have told us repeatedly that this journey will feel like a roller coaster. Days filled with joy, days that are difficult, and most days you don't know what kind of day to expect it will be! Well they are definitely right, that has been my experience for sure.

This coming Saturday was supposed to be my first baby shower. I would've been headed to Charlotte with my big belly to celebrate with family and friends. For some reason the "what-ifs" have been hitting a little more in the past few days. The "how it was supposed to be" has been on my mind more. And with that has brought some grieving, to be honest. I'm sad that I'm not pregnant anymore. I'm sad I'm not at home celebrating the joy of mommyhood with my family and friends. Not to knock Denver, but I'm sad I'm living here! And most of all, I'm sad I only see my sweet baby boy at short intervals during the day and then go home without him each night.

It's hard to capture the gamut of emotions I have felt this past 3 and a half weeks. The joy of seeing Harrison for the first time (even though I was heavily medicated and unrecognizably swollen from my surgery!) The agony of seeing him in his incubator for the first time and not knowing if he was going to be ok. The joy of seeing him open his eyes, look at me and stretch out his hands towards me (what a precious moment, I will never forget it!) But the heartache of seeing him stretching towards me and me having to look through a plastic incubator unable to pick him up. The joy of eventually getting to hold him and read books to him and sing to him. The sadness of that happening in a hospital rather than his little nursery at home. The encouragement of getting literally hundreds of cards and emails from all of you, all over the country. That has blessed us so much and caused me to cry many tears of joy (nice to be crying for a different reason at least!). Wrestling through moments of anger and confusion with the Lord (let's just be real!), but also having moments of experiencing His presence so closely and sweetly. So suffice it to say, this journey has in fact been quite a roller coaster.

In these recent days of thinking about how things were "supposed" to be, the Lord has reminded me that although I don't understand why the story is written like it is, this is how things are supposed to be. This has not taken the Lord by surprise, although it did surprise us. And that has begun to bring me comfort in the midst of this trial. Please continue to pray that Josh and I can rest in the fact that Jesus knows exactly what we are walking through, it doesn't take him by surprise, and he is walking right there with us, holding us by our right hand (Isaiah 41:13, a verse I have kept coming back to).

And please continue to pray for our sweet Harrison. Keep praying for his lungs to develop strong. He is on the CPAP and they have turned it up to a higher pressure to help him out more, so he doesn't have to work so hard. Pray he tolerates the CPAP well, as he has been doing so far. Pray for his lungs to expand and for breathing to become easier for him. And pray he keeps gaining weight quickly! One of our fav nurses, Al, said once babies reach 1 kilo (1000 grams) they often have a little growth spurt and their breathing begins to be easier. Well Harrison is at 950 grams right now, so pray he reaches this milestone soon.

We can't thank you enough for your prayers for us and our son! And with that, I return the blog to the care of Josh...

Monday, August 22, 2011

August 22 Update

Little man is still cruising. He kinda hit a stride all last week and we didn't really have a bad day until Friday. All week he rotated between the cannula and the CPAP in an attempt to help his nose heal from the rubbing of the mask. Friday night he was really lethargic again, but this time there was no apparent reason. He wouldn't even hold his mouth closed, which was weird to us while we held him. And his O2 saturation was running consistently low. So we we were concerned that night. Nursed determined that he was tired from being on the cannula most of the week. He does okay on the cannula, but he doesn't need to work that hard, and we believe it wore him out.

So they made a decision to keep him on the CPAP constantly over the weekend. He has been holding strong since then and doing well.

The air Harrison is breathing is a little over 30% O2. We breathe 21% O2. So he is pretty close. Doctors want him under 30% and even though he did so well on the cannula last week, they haven't been able to consistently get him under 30% without his saturation going to low. So yesterday they ordered a X-ray to check out his lungs. They found that there are very small portions of his lungs that haven't opened up as much as they would like. His lung volume hasn't maximized which is okay and normal for someone as young as him he just needs some help. His lungs came out of the womb kinda rigid like brand new balloons. And it will take some time for them to stretch and become more pliable as he uses them. But he lacks the muscles to do so well. The CPAP is more helpful for developing his lung volume because of the constant pressure. They turned up the pressure a bit when they discovered this about his lungs hoping to help them develop.

Saturday night I (Josh) actually got the chance to attend the Denver Broncos preseason game vs. the Buffalo Bills. The Ronald McDonald House provided tickets for many of us staying at the house. Anyway that night we couldn't go at 8pm so we went at 12 midnight. We learned then that Little Man broke through the 2lb threshold. That was an exciting milestone! He weighed 930 grams tonight. We are hoping to break the Kilogram mark by the weekend. Tonight they bumped his feeds up again from 11ml to 13 ml/2 hrs.

A few things you can pray for:
-That he continues to eat and gain weight. 1 Kilo by the weekend.
-That his lungs begin to stretch and develop over the next few days.
-That his red blood cell development continues to be okay. He gets a Blood lab Wednesday night to monitor this.
-That he tolerates the CPAP well and over an appropriate amount of time graduates to a O2 Cannula for good.

Thank you so much for all your prayers and love.

Saturday, August 20, 2011

Denver Botanical Gardens

Some friends out in Denver that we just met through church gave us some free passes to the Denver Botanical Gardens. Friday morning we enjoyed this with Josh's parents. It was so refreshing to get out and walk around and enjoy beauty, stillness and a quiet, cool morning. Thanks, Phil and Kathleen.

Week 2 and 3 Review

First time working on a binkie while feeding.

My first t-shirt.

17 day-old foot and hand prints.

Little hand.

Little hand.

My first bath.

Little foot.

Story time with mom. Dad looks pretty intrigued.

Close-up of the CPAP mask.

Contrast the CPAP with the O2 cannula.

Beautiful wife and baby.

Our favorite card we've received.

During Care Time.

After Care Time.

First time he opened both eyes, day 12.

The long hallway to the NICU. We find ourself praying every time.

Certificate for participating in a lung study.

11 day old foot prints.

His monitor of his vitals.
Green- Heart beats/min
Blue- O2 Saturation %
Yellow- breaths / min

Little Man holding Josh's wedding band.

Harrison's first bath

Harrison's first t-shirt