Wednesday, August 31, 2011
Thursday, August 25, 2011
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.
Wednesday, August 24, 2011
Monday, August 22, 2011
Saturday, August 20, 2011
First time working on a binkie while feeding.
My first t-shirt.
17 day-old foot and hand prints.
My first bath.
Story time with mom. Dad looks pretty intrigued.
Close-up of the CPAP mask.
The long hallway to the NICU. We find ourself praying every time.
Certificate for participating in a lung study.
Thursday, August 18, 2011
I think Howard Hendricks said, "God doesn't give us children for us to raise them, he gives us kids so they can raise us." What a tumultuous 19 days. I can't think of a more emotional time over such a duration at any point in my life. And there are yet weeks to come. Most days are marked with joy in seeing the small strides Harrison is making. And I can't get away from the word gratitude. We keep getting cards and emails from so many that want us to know they are praying and that you love us.
A normal day for us is going to see him at 12 noon and 8pm. We can go in whenever we want however long we want 24 hrs a day. We just feel like that is a good routine for us to balance the stress and get some healthy time to take care of ourselves. Everyday before we go to the hospital as the time gets closer our hearts get more and more anxious praying and hoping he is doing well. And then we walk down the hallway. The other day I was getting a haircut with my dad in the middle of the afternoon, we were both being worked on and another man wearing nurse scrubs came in to wait for a haircut as well. When I saw him my heart just instinctively did a back flip and sank for no apparent reason.
And then as we leave most days after seeing, holding and getting an update on Harrison our hearts begin to sink as we leave him there at the hospital. If you've had any NICU experience you alone can relate to the torture it is to have to wonder, "will we get to take him home?" "will he be okay?" It has become easier with each day bringing good news of progress, but I wouldn't put this burden on my worst enemy.
We sort of feel like we are in a fog. We know we are going the right direction and we know as we keep moving the right way we will soon see the horizon ahead. But at any moment something could happen, we could hit a complication. These are vulnerable days for Harrison. That being said he continues to be doing all the right things. Nothing going on is concerning for doctors. So we patiently wait and wonder in awe as this child transforms into further maturity.
He already looks different. And this is a miracle, but he is growing and making great strides. His body is having to do things its not quite ready to do, because he is supposed to be in the womb. But he is doing it. The respiratory performance he's having is such a huge piece to the process. Foundational is a good word, because everything else can happen after that vital piece is in place. His little frame isn't supposed to be processing O2 at all at this age, but it can. While all the organs and bones are growing, he simultaneously has to supply the fuel for life-O2. He can breathe well, but it is one more part he isn't designed to do at this stage, so his body is adapting to its needs. This on top of all the growth going on is pretty demanding for his body.
From what I've understood, red blood cells would only be moving nutrients to his body inside the womb and the O2 would come from Mom's red blood cells. But now that he needs to produce O2 on his own, his body is in overdrive. Red blood cells now deliver both O2 from his own lungs AND nutrients from his intestines. Red blood cells are made in our bone marrow. His tiny frame may have a hard time keeping up with the demand with all these simultaneous needs. So many things are constantly happening while bones, muscles, the nervous system are still in process of developing. It is phenomenal to think this can even happen. But it is! He is doing so great. So he needs a lot of red blood cells and may become anemic if he can't keep up production from his limited amount of bone marrow. This is a common issue for premies. But pray specifically for that. They have been giving him Iron and we just found out today that his red blood count is normal! If it was low, they were possibly going to have to give him injections to help him produce red blood cells, but they dont have to do that for now. Keep praying that he produces them on his own and that his numbers stay good, like they are now (that was our big PRAISE from today!)
We've been worn out the past several days acclimating to this new lifestyle out here. And I've been pretty melancholy most days trying to see the big picture and I can't help but wonder what God might have in store for Harrison's life, thinking about why we get to walk this path. I heard some wise counsel from a pastor that it's not entirely helpful to try and justify why cause it's a mystery. Yet, I can still hold fast to the gospel of grace and it is still good news even in all of this drama.
I worshipped Christ this weekend at church through communion in a very new and unique way. I tend to be fairly emotive for a guy. But I have never cried while partaking of the elements. All these new experiences and emotions as a parent have put colors on Christ that I've never seen before. As the pastor led us to consider the Story of the Bible and the promise that Christ has secured for us a day when all will be made right, I wept. Communion is a foretaste of a wedding feast between Christ and his bride, the church. That day the church will be with Him and have every longing and desire met and fulfilled in Him. With one foot was squarely fixed in this broken, twisted, corrupt world filled with death and despair I wondered if my son will be okay. And with one foot squarely fixed on the Surety of this great Savior who is good and will provide a perfect way to Himself I rested and worshipped him as the Provider for my son.
With all these longings my heart is bursting with, I began to rest in this great love. Christ is better than being a parent. He is better than raising a healthy child. He is better than holding my son to my chest. For he holds Harrison closer. I believe that, but at the same time I don't. As we sang songs of praise there were tears of anger still as I wrestled with the why, but I beheld Christ in a new satisfying way. Pray that this whole experience would keep us tender toward the Lord and his promises.
So maybe Hendricks is right and God wants to grow me through this process. It is causing me to worship better and more purely. And as I am sorrowful while longing for the day to know Harrison will be okay, I rejoice that there is a day secured when all will be right and beautiful.
Wednesday, August 10, 2011
It's still weird to call myself a dad. Lots of you have inquired as to how Erin and I are doing so I thought I'd chime in on us a bit.
The dust has kinda settled from the wild ride and in some sense we are trying to figure out life now with this new hand we've been dealt. We have entered a new 'normal' and we're trying to figure it out. So now we're trying to make sense of what the next several weeks will look like being so far from home and living life with so many new realities. With Erin recovering so well, the past week we've sort of got our living situation organized and tried to fall into a day to day routine.
Every 4 hours Harrison is looked at by nurses and cared for in the NICU. They check his temperature, change his diaper, address his meds, take off the CPAP, clean his face, etc. They do that so they don't mess with him all day and he can sleep and be on a routine. He is on a 8-12-4 rotation. That is a good time to pray for him as we are updated on his progress. We go to the hospital at noon and 8pm to hold him, take pictures, etc. The rest of the day is filled with a Erin's 3 hr nursing schedule, trying to have a daily outing, figuring out meals, taking calls, managing life,
There have been challenges we have faced in life and in our marriage, but nothing as intense and as significant as this. We don't want to lose this child so badly, and long for the day when we know he will be "out of the woods." These are deeper waters than we've navigated personally and spiritually. With much hanging in the balance this early, it's hard to have much of a life or think of things going on outside of the NICU. And it is daunting to think through what 12 weeks of this will be like. We go to the hospital hoping he is doing well, and about every time we leave sad that we can' t take him with us. We have definitely cried and are broken over the stressful circumstances, and are trying to be aware of our heart and communicate what is happening honestly and openly to each other and God. Honestly, blogging has been pretty therapeutic for me.
I think we are sort of homesick too. We were feeling ready to be back in NC the week before our time in Ft. Collins was over... One of the most refreshing things we did all week was eat at McAlister's after church. We all got some sweet tea. That took me home... all the way to the humidity of NC. I think that is the best sweet tea on the planet. But its been hard to not be at home and think through the beginning of the year on campus and be a part of all the happenings with our friends and staff team. Pray for our staff team as they juggle everything with our absence. Not that we are irreplaceable, but this is alot for them to reconfigure as we have a leadership retreat next week Tuesday-Thursday to kick off the year.
We know we are not alone in all this. Erin's parents flew in from NC on Harrison's birthday and are leaving tomorrow, Thursday 8/11. My parents are coming Saturday and are planning to stay a week. We've received dozens and dozens of cards, gift cards, emails, prayers, and phone calls. We are really overwhelmed by all the love and support so many of you have extended our way.
I have gone to bed meditating on Hebrews 4 the last few nights.
14 Since then we have a great high priest who has passed through the heavens, Jesus, the Son of God, felt us hold fast our confession.15 For we do not have a high priest who is unable to sympathize withour weaknesses, but one who in every respect has been tempted as we are, yet without sin. 16 Let us then with confidence draw near to the throne of grace, that we may receive mercy and find grace to help in time of need.
I've been thinking through the implications of our new life out here and looking to Christ who went through a cosmic anxiety for his own life, emptying himself, leaving perfect communion with the Father behind, to make the gospel real for the lives of those who believe. He paved the way to this throne of grace through his suffering.
This chapter refers to a rest or peace that is available only because of the faithfulness of this this great Christ. He is offering something we can't get anywhere else. This peace, this fullness, this completeness is a reference back to the Garden, the way things were intended to be with God before anything went wrong. I'm trying to believe that this void in my heart with this whole mess can be redeemed and is by the worth of this person who loves me more than I could imagine. His love is beautiful and better. I pray you see that love more and more in your own life.
On a closing note, Lauren one of our favorite nurses that we've been getting to know more and more has a pressing need in her life. She is awesome. The first time I walked in the NICU when Harrison was admitted everyone was scurrying and taking care of him she looked me in the eye and said, "we are damn good at what we do." We really like her. She has a lot of optimism and has been so encouraging to us. Last month she was diagnosed with Non-Hodgkin's Lymphoma. Tomorrow she goes in for her second round of treatment. She has a great attitude and is optimistic for herself. Would you pray for her and that she would be healed and moved into the deeper reality of Christ's presence for her.
We love you all.
Much Love from CO,
josh and erin
Sunday, August 7, 2011
25 I will sprinkle clean water on you, and you shall be clean from all your uncleannesses, and from all your idols I will cleanse you. 26 And I will give you a new heart, and a new spirit I will put within you. And I will remove the heart of stone from your flesh and give you a heart of flesh. 27 And I will put my Spirit within you, and cause you to walk in my statutes and be careful to obey my rules. 28 You shall dwell in the land that I gave to your fathers, and you shall be my people, and I will be your God. -Ezekiel 36
Without thy sweet mercy I could not live here,
Sin soon would reduce me to utter despair;
But, through thy free goodness, my spirits revive
And he that first made me, still keeps me alive.
Church is a great reminder of what is true. Today through this scripture and song I was overwhelmed with God's mercy. My flesh hates being subject to something outside my control. But God's mercy is a very good uncontrollable factor in our lives. We don't make ourselves presentable to God. We can't. By faith, he mercifully exerts all the effort and energy to bring us to himself clean. This is a very good place to be.
I see Little Man being worked on everyday by people paying attention to the smallest detail and it also is a healthy reminder of this great Outside Intervention going on in my own life. I did not save myself. I could not. There is One who faithfully intervened on my behalf and did what I could not do for myself. Jesus paid attention to every detail and now I'm free. What mercy!
We have had 8 very, very positive days. Harrison just knocked out day 8 tonight. Different nurses have called him a "champ" and a "rock star." We've had an incredible first week. My brother adequately refereed to it as a golden week. To be at now where we were 8 days ago is pretty unbelievable.
The past two days have been very positive still. Today was a little stressful as we rode the proverbial roller coaster for a bit. After 8 straight days of positive news and feedback we walked into some unsettling news. We knew we wouldn't bat .1000, and we've been told this will be a process of a few steps forward and a then a step back. Today wasn't really as much a step back, as it is Harrison choosing to take a break for a few seconds.
Harrison is obviously underdeveloped. Among other things that are still growing is part of his nervous system. Right now, the part that runs his involuntary breathing isn't quite fully operational. He is breathing on his own really well better than 90% of the time, but he gets tired from all the work and every now and then takes a break. This little rest coupled with the lack of stimulation from his brain and nervous system causes an episode nurses refer to as a "Brady."
I've witnessed about 4 of these, and it is kinda terrifying. In the middle of his hiatus his heart rate plummets from 160-170 to 40-70 beats a minute and his O2 saturation then begins to quickly taper. A lot of alarms begin to beep and red lights flash. Which set off my blood pressure and heart rate. But a slight rub on his back, a wiggle on his torso will cause him to snap out of it and remind him to breathe. Often, in shorter spells, he comes out of it on his own. And in about 10-15 seconds everything resets and continues
He has had anywhere from 2 - 3 Bradys every 12 hours since his birth. And we've been assured these are really normal. Every baby goes through these. In fact, it's a rare exception if a pre-mature baby doesn't Brady.
So in some sense this is part of the process of a pre-mee's development. When we went to check in on Harrison he had recorded 4 Saturday night and 5 throughout the day today. Enough to warrant some further inspection from doctors. They were concerned maybe an infection was wearing him down so doctors ordered a blood lab. And as it turns out his blood came back with great numbers. His white blood cells were normal, and he actually just finished 7 days of antibiotics 2 days ago. So they don't feel its an infection. He is tolerating feeds. They have increased his feeding from 1ml/4 hr to 2.5ml/2hrs. And they want that to go up to 9.5ml/2 hrs over the next week. They also took an x-ray to check out his lungs and they looked very much improved, strong and clear.
One thing I believe effected him was something that happened yesterday. They tried to insert a permanent IV into his arm. He had one in his bellybutton they wanted to remove to avoid infection. This line (no bigger than a thread of cloth) would go into a large vein in his upper arm, around his shoulder and settle close to his heart. They were unsuccessful to turn the corner (fairly common) at his shoulder and didn't leave it in. They worked on him over an hour and he fussed and fought them about the whole time. That really wore him out, because when we went to see him later that night he was really lethargic. I think that spell of working on him wore him out and he's still recovering from being worked over for an hour.
We aren't sure why all the Brady's occurred all the sudden. And it seems it's normal for pre-mies. All Harrison's other signs are showing progression. He pooped today when I changed his diaper. It was a load from my perspective, but the nurse told us it was about a medium size. He weighed in at 1# 10 oz tonight gaining 45 grams since yesterday (a big jump).
May the Great Physician continue to intervene on Harrison's behalf and bring him to full maturity.
You could pray for him in this way:
That these Brady episodes would lessen and not harm him. They are treating him with caffine for his heart, and that can help to a point. But it seems time is the only cure as his body continues to grow. But pray his nervous system develops healthfully.
And pray he gains weight and tolerates his feeding. This is the next big hurdle after the respiratory one we cleared this week. This will help grow and develop him more than anything at this point. If he keeps tolerating his feeding, they can take his IV out for good!
Thanks for your prayers,
Gripped by this mercy,
Friday, August 5, 2011
This is sort of a week in review for the other 6/7 of the planet not connected to facebook.
Thursday, August 4, 2011
Today is day 6 and we had more good news from the nurses caring for Harrison. His last blood lab has shown his red blood cell count is a little above normal. This means two significant things at this point. His liver is working properly, and there is no bleeding or damage to his brain. He gained a little weight. Not sure how much, but he didn't lose any. He pooped again, literally a small thing, but in the scheme of things a very significant thing! And tonight, they pulled his CPAP off for about a minute to clean his face and he breathed on his own... the nurse made a comment saying, "99% of babies his size and have would not have tolerated that so well." We are really encouraged.
Tuesday, August 2, 2011
I know so many of you have been informed of what has happened out here in CO. You have been praying for us, are really concerned and want an update.
So what happened?
Previous to last week, we spent the last 5.5 weeks in Ft. Collins, CO taking seminary classes through our work with Campus Crusade. Last week, after all that, we vacationed with my family further up the mountains in Dillon, CO in a cabin. We arrived in Dillon last Tues .
Thursday evening Erin began to get symptoms of High Altitude Sickness. Headache, nausea, lack of appetite, couldn't sleep. Friday AM she began to vomit, couldn't keep any fluids down. After 4 hours of throwing up, we called a doctor. High altitude sickness is so common one guy has made a practice of making house calls in the resort areas of the mountains. (His name is Dr. David Gray and he saved Erin's life. So he is good at what he does!) Upon evaluation he was suspicious it was something more significant when we informed him that we had been in Ft. Collins for 5 wks. He felt we should be acclimated to the elevation and that Erin shouldn't have been having such a violent reaction. Erin's blood pressure was so high he wanted us to see an OB doctor immediately. At 230PM we checked into the Frisco, CO hospital. They began to do lab work on her blood and urine and monitor her vitals and Harrison. Her BP was consistently around 170's / 90s.
As soon as her labs came back she was diagnosed with pre-eclampsia. A rare pregnancy disease where the placenta throws off blood chemistry circulation in the mother and causes BP to elevate. Veins constrict in the major organs so they do not function properly, and essentially her blood becomes more toxic. If it progresses to far, the mother can have a seizure. Medication can help lower the BP to buy time, but the only cure is to get the placenta out of the mother. So it is a balance of letting the baby keep growing as long as possible and making sure mom will be okay.
Before her lab results came back in the mountains, the doctor told us that for certain the baby would not go to full term, but that we could perhaps buy weeks of time with medication and bed rest. He instructed us that we would most likely need to descend to Denver and be monitored for days until we could be sure she would be okay.
When her labs came back the situation elevated. They were so high he wanted us in Denver immediately. I asked if we could drive, thinking to avoid an ambulance ride, and he said, "no you will be transported by helicopter life flight." It was stressful the entire day, but my heart sunk at that point. They were trying to save her life at this point, and if need be have her in a place where they could receive Harrison in a Neo-natal ICU (NICU). Erin asked if I could go too. "No, only room for 2 nurses, you, and the pilot."
15 minutes later 2 nurses in flight suits walked into the room and began to switch over all of Erin's wires and cords to their machines, put her on a stretcher and get her comfortable for a 26 minute flight to Denver.
I was in shock this whole time, tears welled up, praying my wife would be alive when I saw her again, and extreme gratitude that care was available for her. These guys were amazing. So kind and encouraging. These nurses are the best of the best of the best and I was reassured through their behavior and professionalism that Erin couldn't be in better care.
I watched the helicopter take off and bolted to the cabin to get our stuff say goodbye to my brothers, and headed to Denver. My mom rode with me, and my dad followed in another car.
3 hours later I met up with Erin in her room. Upon her arrival in Denver, they had proceeded with another lab of blood and urine and determined her numbers had slightly elevated. Shortly after, a doctor came in and told us that they would likely need to do a c-section within 48hrs. If it could get any lower at this point, it just did. Our hearts hit the floor. We asked how big Harrison measured and they estimated he was a little over a pound. We looked at each other in disbelief.
6 hrs later, at 3am they did another blood lab and the numbers hadn't gotten worse but they didn't lower. At 6am they informed us her urine sample came back so bad that it was in the best interest for Erin to proceed with surgery and get Little Man and the placenta out.
6:43 they began surgery. 6:51 Harrison was born. 7:30 Erin is out of surgery. 36 hrs prior to all this we thought Erin was having issues with altitude sickness, and now we are parents of a 1# 8 oz, 13 in long beautiful baby boy.
During the surgery they discovered the placenta had pulled away from the uterus and there was some internal bleeding going on. Bad for Harrison and for mom. One of the surgeons said this was the perfect time for him to be taken out. It would have only gotten worse from here.
Did altitude cause this?
There is no determined cause for pre-eclampsia. Young moms can get it, and old mom's can get it, and women with high BP have a tendency to get it. Erin is none of those. In fact after talking with Dr. Gray on the phone in an emotional conversation thanking him for saving my wife and son's life, he felt if anything the altitude brought this silent sickness to the surface and let us know something was wrong that we otherwise probably would have had no idea. We could have been driving through some remote part of any state between CO and NC and had no idea anything was wrong.
Update on Erin:
Erin's recovery- Erin has been recovering really well from surgery. Her BP began to fall soon after surgery, she got an appetite, and was able to get fluids. She is on pain meds and will continue to be on bp meds until her body recalibrates which could take weeks. But she feels fine and has been recovery really well. She delivered on Saturday and will likely be released from the hospital Wednesday 8/3.
Update on Harrison:
Today is day 4 for Little Man.
Harrison has been impressing nurses and doctors every step of the way. I actually heard him in the operating room whimpering so he had a little lung function then, he was struggling to breathe but even at that point it was a really good sign. They put in a breathing tube immediately and had him on a ventilator. There were 16 people in the operating room during the c-section. About half on erin and half to receive Harrison.
He has had 3 remarkable days and today is another. He is doing so well, he almost couldn't be doing better. He is on antibiotics cause his white blood cells are high, so he may be fighting an infection. But different nurses use the same words to describe him- "a fighter", "feisty", "active" "has a temper" When they get in to work on him he begins to churn his arms and kick and pulls on wires around him. They love to see this. It makes them believe he has no infection and think his body is responding to the stress he has been introduced too.
The nurses we have begun to have a relationship with are all optimistic and tell us to be hopeful. This is going to be a "roller-coaster" full of good days and bad days. And there are many complications which they know of that they are keeping hidden from us because it would be too much too soon and perhaps unnecessary. But right now he is doing really really really well. And praise God for that. Everyday that is a good day is a miracle. I have been overwhelmed with the care and consideration they have for us as parents. They have been so informative, realistic, and hopeful with us.
One nurse in particular said, "I've been doing this 25 years and seen kids younger and worse of than him turn out to do great." She is from TX and has been really firm and honest. She said, you can't be concerned until we are concerned, and right now we are not concerned. He is off to a great start, and it could turn on a dime. But we can't think about the what if's, another nurse said, we need to only consider the window of time around us and take one day at a time. At noon today they removed his breathing tube, which was a huge step, and gave him a CPAP mask. So far he has responded really well.
We are going to be in Denver for sometime. God willing, until his due date October 24. There is a chance we could have him transfered to NC, but that would be 2 months out, and a huge insurance claim Blue Cross would need to say yes to, away.
We are in the Ronald McDonald House in Aurora, CO It. Is. Awesome. 3 yrs old, and unbelievable.
Our address is:
Josh and Erin Smith
Room: 3S (as in Sam, NOT 5 as in 6-1=5)
932 Potomac Circle
Aurora, CO 80011
We hate that we are not at home and won't be for a long time. But it is just a mild inconvenience in light of Erin and Harrison being in such good hands and health now.
Here are a couple things you can do if you want to help out:
Target Gift Cards - to help us get settled to life out here
Gift cards for eating out food places. Franchises, chipotle, Jimmy Johns, etc. We are basically operating out of a hotel. Volunteers do provide several meals a week and this is a great set up, but we are basically out here for a long time and have to make it work with only the stuff we brought for the summer with us.
Email us- I know so many are praying for us, but if you would feel led to email us your prayers that would be really encouraging to hear from you that way. Mark Carrington a really good friend just did this and moved me to tears. It was amazing to hear his voice through words and know we are being lifted up before the throne. If you want to email prayers for us that would be amazing. firstname.lastname@example.org and email@example.com
Many of you have offered us housing and for now the ronald mcdonald house I think will work for us. If anyone knows of something in the Aurora area close to University of Colorado Hospital for short term housing for our family that comes to visit us that would be a great thing for them...
That is enough for now, more to come soon!
Rooting for Little Man,