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.

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, joshua481@gmail.com 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!

josh

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,O,U,S

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.

josh