"What would have become of me had I not believed that I would see the Lord's goodness in the land of the LIVING. Wait, hope for and EXPECT the Lord. Be strong and of good courage and may your heart (Ned) be sturdy and enduring.....Yes, Wait For and Hope For and Expect the Lord."

Psalm 27:13-14 (Amp)

Tuesday, April 15, 2008

Suffering for Perfection

The past few days have been extremely tough for Ned and us. Betsy was home this weekend while Robin came up to stay with Ned. It all started when they went to do try the MRI on Friday for the 2nd time, and didn't get him sedated in time to make the appointment, so Ned had two days of drugs for naught. Over the weekend, his reflux troubles increased rapidly, to the point where they cut his breastmilk intake from full feeds down to 5 mL an hour and switched him to continuous feeds. Upon Betsy's arrival back in Chapel Hill on Sunday evening, he was still wretching and spitting up terribly, so they decided to try and get a central line IV access back in, in case they needed to give him nutrition from something other than the milk feeding tube. This turned out to be fruitless as they couldn't get the line in his neck because of all the scar tissue from having lines there before. A different nurse practitioner also failed to get a line in on Monday morning, so they wheeled Ned down to the operating room to put in a central line in his groin surgically, which was a success. They also put one in his head on his scalp for additional access if needed. His reflux has been pretty minimal today, but we're waiting to see what he does tonight and tomorrow, because he was fairly sedated from the surgery for the remainder of the day. He is currently getting about 10mL an hour on continuous feedings and they started giving him sugar water to supplement this.. They still have no idea what caused his major reflux problems as of late, but we're just praying that we've gotten through this.

As for the feeding issues we are having, we are still waiting on the doctors to decide which course of action to take. The surgeon who put the line in this morning mentioned that he thinks his stomach may be too small to actually get a G-tube in, as well as perform the nissen procedure (to cinch the opening between his esophogus and stomach not allowing him to reflux) or to put in a J-tube which is basically taking that same area of bowel they just put back together, making a Y out of it, and bringing one in out of the belly for us to be able to feed him directly into his bowel, bypassing his stomach. Either way, they are wanting to wait 2 more weeks to give his stomach/bowel area time to completely heal and scar up since his last surgery to put his bowel back in. This is of course, if they can control his reflux until then. Dr. Adamson came by today and spoke with us, and said he is going to get with the radiologist who did the X-rays this morning, to see exactly how big his stomach is before rushing to a decision on which feeding access procedure to perform.

We have both been struggling as of late, as we feel we've kind of hit a road block, and Ned's progress is either at a standstill or backsliding some. This is a very scary and uncertain time. I have found myself really struggling with everthing. As I left work around lunch today to drive up, I discarded my usual radio stations for some silent, alone time with God. I prayed that He would get my son and my family over these hurdles. I said I know this is all in God's perfect timing, but as He all too well knows (because I've been telling Him), we are tired and weary. I know I'm weary, and I know Betsy is weary, because being in that hospitol day in and day out drains you. I know our strenght is coming from the Lord, because it's impossible to humanly do what we're (she's) doing. Anyway, in addition to this, I also prayed that if He wasn't finished here, if He would have me or her do anything for anyone else, to make it perfectly clear. We also prayed this over dinner (if you call 9:45 dinner). We got back to the hosptiol about 10:15pm, and there was a young couple who's baby was across from Ned in the NICU. As we watched our big guy rest, we overheard the doctors talking to the parents of this very sick baby who is maxed out on the ventilator settings he/she is on. I immediately thanked God that the doctors never had the conversation we were hearing with my wife and I. We heard things like... "The support we are giving this baby is pretty much maxed out. We could be puncturing lungs right now. How much do you actually want us to do if things go badly tonight?". I could read the look on Betsy's face, as she could mine. I think we both just sat there with Ned, silently, praying. God really laid it on my heart right then, to pray with that couple. I was immediately freaking out, because those of you who know me fairly well know that that's not me. I'm not really a front lines guy, don't like the spotlight. But I knew, I hoped, the spotlight would be on God, not me. I worked myself up for it. I even asked Betsy if she would make the offer to them, break the ice, and I'd do the praying. I contemplated asking our nurse to offer prayer with them for their child. We decided to wait until they finished taking pictures of him/her, and go over and offer to pray with them before they left. It didn't quite work out. Our nurse and Betsy and I started talking about Ned and Jack, and home, and 5 minutes later I looked up and they were gone. I am really hoping and praying that I didn't miss this opportunity. I am now praying that God will present this opportunity again tomorrow morning when we go back to the hospitol, and that it's not too late.

In addition to praying for Ned, I ask that you guys also pray that we will continue to take notice, and really listen to where God is leading us, as we wait and expect God to heal our baby boy, hopefully to bring him home very soon. Thank you for all your prayers and your encouragement day after day.

In Christ,
Travis, Betsy, Jack, and Ned

5 comments:

cad said...

You guys have been on my heart. No recent posts have kind of been the clue that you were on overload.

This is a tough thing to go through, and my heart is hurting for you guys. I am so praying for little Ned, that God would fix whatever it is that is holding him back and that in the meantime you guys can discover the peace that comes from knowing your purpose in that hospital.

Please remember that you are surrounded by prayer and that you can run to the arms of the Savior whenever you need a hug. I am so glad that he is right there with you and can minister to your weary bodies and souls.

Cadenne Hope's Grandma said...

Oops that last one was from me. Don't know why it posted my name is "Cad." Hmmmm....

Anonymous said...

Travis, Your recent post helped by letting us know we need to faithfully continue to lift you, Betsy and the boys up in prayer.

I really can only imagine the exhaustion (both mental and physical) that you guys are experiencing. I admire you both so much and your extended families, for how you have taken this opportunity to share what God is doing in your lives.

We are praying that God will continue to give you the strength you need, day by day....that He will continue to heal Ned, and that He will clearly show you His desires for your life. Know that you are being a blessing!
Love you guys, Sherry
Isaiah 61: 1-3 (a favorite...."beauty for ashes")

Marcio said...

There is nothing that I can say that you don't already know...but sometimes it's just good to surround ourselves with truth. In the past year, I've learned that God often pushes us just to the breaking point so that we know that we know that we know that we have nothing left of us to run on...that all we have is Jesus. He'll bring us to the complete and utter end of ourselves...and although it IS a weary and exhausting place to be...it can also be freeing b/c you know you have no more wisdom, strength, knowledge, or courage, of your own....you are free from yourself...you can just lean on Jesus. I'm sorry that you are suffering in this way. You know that it is through the suffering that we are refined. Keep inviting Him to work through you while you're there. It's pointless to TRY to do things for God on your own...just let him do it through you. One day when our good works are measured, what we did in our own strength will burn up and what will be left to shine as gold in our crowns will be what we allowed HIM to do THROUGH us. I really am praying for that other family you mentioned in your blog and praying that He will use you to minister to them through whatever way He chooses. Don't fret about missing an opportunity. Getting distracted talking to your nurse did not catch God by surprise. Maybe He had better timing for you to talk to them. Praying for you today...praying for encouragement. One last thing...don't get bogged down thinking about tomorrow or next week or how long you might be facing difficulties with little Ned....or how long you'll end up being in Chapel Hill. Something I often remind myself is that God gives us NEW MERCIES each DAY. We have not yet been given the grace to deal with what tomorrow or next week or next month or next year will bring....so we shrink back with fear when we spend time thinking about it. His mercies are new EACH MORNING....His grace is given sufficient for the day. So when you fall into your bed, exhausted, worn out and bogged down at the end of the day...you can rest assured that NEW MERCIES are coming tomorrow...all that you need to get through that day will be waiting for you as you wake in the morning.
Julie

Anonymous said...

Betsy and Travis, I have not posted in awhile, however stand assured that I continue to read your posts and be blessed by your words. Know that prayers are going up daily for you and your family, as well as each of the families that God has chosen to put in your path. Julie's post said it all. How beautiful were her words. This I know without a shadow of doubt that God Will Give you the strength, the wisdom and the courage to face each and every day with whatever it brings. His ways are not our ways and His time is not our time. He is sufficient to meet each and every need. We sometimes do not realize that until we get to the point of exhaustion and the end of ourelves. I look at my own life and realize that He has been my anchor in the storms of life and that he is the Peace Keeper. My heart hurts and aches for you. I know you are tired and weary and utterly exhausted both mentally and physically. Rest in Him and know that He is God. We sang "God Will Make a Way" in church on Sunday and I am confident He will. Love you guys so much, Krista