12/25/2009 update

Another not so amazing day for Malachi. He's certainly fighting though. They are still struggling to keep his oxygen saturation levels where they need to be. They have been unable to wean him down on any of the nitric oxide or the oxygen through the ventilator with out his sats dropping. So he is on 100% oxygen and 20 ppm (parts per million) of the nitric oxide. Even with those settings, he dropped down into the 30s for his sats and would not come up on his own. They had to use the resuscitation mask, I believe, on three separate occasions today. This does not set well with my tummy. We are still hopeful, but we are also very heavy-hearted. It's very frustrating to be in a constant state of unknowns. But that is where we are.

Today was once again spent shuffling here and there, back and forth between time spent with family and at the hospital. We hope Christ wasn't completly "lost in the shuffle," but I think it's safe to say unfortunately that God's gift of sending Him to die for our sins wasn't necessarily on the forefront of our mind for a greater part of the day. Thankfully, the God of the Bible is a God of second chances.

I was reading today a book called "Shopping for Time." The following is an excerpt from that book, but I have replaced some of the names. I hope that one day, this can be said of me in my situation:

...This was not the life she had planned. It wasn't what she wanted. She felt stuck in a season that wouldn't end. Like [Marissa], none of us would choose "a time to weep," or "a time to mourn," or a time of sickness--a lifetime of sickness. This isn't what [Marissa] chose. But it's what God chose for [Marissa]. Here, inside this truth, [Marissa] found joy. No, [Malachi] didn't get better...Yet she came to the realization that this life--one she hadn't planned for herself--was the very life God had planned for her. God had designed this long, unexpected, unwelcome season so that [Marissa] could best glorify Him. he had allowed this trial so that He could show His goodness and mercy to [Marissa] in totally unexpected ways. [Marissa] found joy when she came to rest in the truth that God orders our seasons.

...If you were to meet [Marissa], her joy would be immediately obvious. It's a deep joy, infused with peace. And it displays itself in a genuine care for others and continual expressions of gratefulness to God. To be around [Marissa] is to catch a glimpse of the love and goodness of Christ. [Marissa] isn't just surviving. She's truly thriving, growing, and rejoicing in the season God has ordained.

Lord, I pray that the above might be my testimony to those I leave behind when my time here on earth is through. Thank you for ordaining my seasons.

Throughout the course of the last few months, there have been many people saying that they are praying for us. For that, we could never completely express our gratitude and appreciation. We must also keep in mind the very true reality that only the effective, fervent prayer of a righteous man avails much (James 5:16). Then one must ask, “Who is righteous?”

A righteous person is one who has been made blameless in the sight of God. Scripture reveals to us that all have sinned and come short of the glory of God (Romans 3:23) and the wages of sin is death, everlasting death (Romans 6:23). Therefore, no one is good enough to attain righteousness of their own merit. This is exactly why God sent his son to earth (John 3:16). Christ was born to die in order to pay the penalty of our sins. Christ came to seek and save sinners (Luke 19:10). It is then through Christ’s righteousness that we can be made right before God. True repentance is to turn from your sin to God. If you confess with your mouth, “Jesus is Lord,” and believe in your heart that God raised him from the dead, you will be saved (Romans 10:9). Repent, confess, and believe.

No earthly man can evaluate or judge whether or not a person is truly saved, but God sees the heart. Love is obedience. Jesus said, “If you love Me, you will keep My commandments” (John 14:15). He who says, “I know Him,” but disobeys His commandments is a liar, and the truth is not in him (1 John 3:10).

It’s all or nothing. God is God whether you believe the Bible or not. He has clearly revealed Himself in the Bible. Jesus said, “I am the way and the truth and the life. No one comes to the Father except through me” (John 14:6). Believe. Be Saved. Love. Obey.

The only thing sustaining us during this horribly heart-wrenching time of our lives is the fact that we have the Holy Spirit living within us giving us the strength we need for each day, each hour, each moment. God is all-sufficient and we pray that that might be evident to those we encounter on the journey He had set out before us.

********

If you are a new believer, a mature believer, or even one who thinks this post is a waste of your time, I would encourage you to do at least the following things:

*Read the Bible to learn more about God and how to be obedient in service to Him as gratitude for creating and saving you (or at least soften your heart and be receptive to the Truth God has revealed to us through His Word).

*Find a Bible-believing church and begin to worship and grow together with other people who treasure Christ above all things. (If you are in the Des Moines area, I highly recommend Willow Creek Baptist Church. In the Indianapolis area? Check out Calvary Baptist Church in Plainfield).

I celebrate the day... (john)

Usually I get pretty excited about Christmas Eve because that is the day my family has traditionally opened presents! Maybe you are like me where in the past I have always had at least one thing that I really wanted. But this year has been totally different for me. I mean its hard to come up with a list of stuff I really want. sure another this or another that would be great. I'm not saying I wont enjoy getting presents, but its hard to describe. I just have a different feeling about Christmas this year. I've always been excited about Christmas time. I love being with friends and family. I love the decorations and the lights. I love the atmosphere and I have always loved the presents. But it just feels different. Like obviously something is missing. I would give up everything I own... every material possession I have and all I would ask if for would be that my WHOLE family would be home this Christmas. Marissa and I both feel that way. We truly and honestly could care less about anything else if we could just have our son home with us. I want him to be healthy and safe, and I want to hold him in my own house while watching my wife and daughter open presents. I was sitting there holding him the other day and the real truth of Christmas hit me. And dare I say possibly even for the first time. I'm just not sure if I remember Genuinely feeling this way before. I thought about why we really do have Christmas. Yes, I am one of many who often say that "Jesus is the reason for the season." And He truly is, but how often do we say that and then still get swallowed up in everything else that comes with Christmas every year? Once again I am not saying all the fun, decorations, time with family, and presents are bad. They are goods things (usually). I am merely saying that even with good intentions and plenty of reminders I still find myself distracted during the Christmas time. I've been praying the Lord would give me His grace and strength so that I might not lose site of Him this holiday season. Because I had to sit there and take a long hard clear look at myself. Have you really sat down and pondered in between the decorating, buy and opening of presents, and the eating of all that great food why you do anything you do? I mean be real with who you are. Look in the mirror and see not who you perceive or want yourself to be but who you are. I think it scares us to really thinking about looking at ourselves honestly. It does me. It reminds me of when I use to "clean my room." I use to just shove everything under my bed. Things I liked and things I wanted to hide found their way under there. Then finally it would come time for me to actually clean my room. And I would have to face the dreaded under the bed area. I thought that if I had to clean everything then I might as well do it right and everything would come out from under that bed. It would be a frightening sight. Ask my parents! I used to do a pretty good job of hiding how much junk I had down there under that bed. And I felt that way sitting there with my son thinking about who I was this Christmas season and what I was celebrating. I don't like thinking and pondering about what is wrong with me. But how can I ask the Lord to help me change those things if I am unwilling to be honest with myself and Him. Far too often I have celebrated the celebration of Christmas and not really celebrated the fact that my God gave up so much and was born just to die on a cross to save the world! The few times I actually do think about Christ coming as a Child I don't really think about what He gave up or what it was like for him to humble himself like that. I pray that I will celebrate Christ this Christmas.

I leave you with 2 of my favorite Christmas songs (the second one is my favorite). I enjoy these not because of the tune or the vocals (even though I honestly do enjoy those) but because they help me to celebrate Christ and not just a holiday.

How Many Kings? (sung by the group Downhere)

Follow the star to a place unexpected
Would you believe, after all we've projected,
A child in a manger?
Lowly and small, the weakest of all
Unlikeliest hero, wrapped in his mother's shawl -
Just a child -
Is this who we've waited for? 'cause...

How many kings step down from their thrones?
How many lords have abandoned their homes?
How many greats have become the least for me?
And how many gods have poured out their hearts
To romance a world that is torn all apart
How many fathers gave up their sons for me?

Bringing our gifts for the newborn Savior
All that we have, whether costly or meek
Because we believe.
Gold for his honor, and frankincense for his pleasure
And myrrh for the cross he will suffer
Do you believe?
Is this who we've waited for?
How many kings step down from their thrones?
How many lords have abandoned their homes?
How many greats have become the least for me?
And how many gods have poured out their hearts
To romance a world that is torn all apart
How many fathers gave up their sons for me?

All for me...
All for you…

I Celebrate the Day (sung by the group Relient K)

And with this Christmas wish is missed
The point I could convey
If only I could find the words to say to let You know how much You've touched my life
Because here is where You're finding me, in the exact same place as New Year's eve
And from a lack of my persistency
We're less than half as close as I want to be

And the first time
That You opened Your eyes did You realize that You would be my Savior
And the first breath that left Your lips
Did You know that it would change this world forever
And the first time
That You opened Your eyes did You realize that You would be my Savior
And the first breath that left Your lips
Did You know that it would change this world forever

And so this Christmas I'll compare the things I felt in prior years
To what this midnight made so clear
That You have come to meet me here
To look back and think that
This baby would one day save me
In the hope that what You did
That you were born so I might live
To look back and think that
This baby would one day save me
And the first time
That You opened Your eyes did You realize that You would be my Savior
And the first breath that left Your lips
Did You know that it would change this world forever
And the first time
That You opened Your eyes did You realize that You would be my Savior
And the first breath that left Your lips
Did You know that it would change this world forever

And I, I celebrate the day
That You were born to die
So I could one day pray for You to save my life

Dear John and Marissa,

What an amazing Christmas you are about to celebrate. It's so easy to just go through the motions (even celebrating Christmas) and not even realize the special blessings we are missing. Your world has been brought to a halt and because of it your lives will forever be changed. So from this point in time forward you now have the opportunity to see things from an entirely different vantage point. Your ability to see, what others can not see, can bring great glory to the Lord. Our prayer is that God will give you the grace to experience every facet of the events that lie ahead, so you will see as He sees.

It's amazing for so many reasons:
*Your little divine treasure--Malachi.
*Your stress filled family circumstances--over little Malachi.
*Your extended immediate family's spiritual involvement--with little Malachi.
*Your extended spiritual family's prayer support--in behalf of little Malachi.
*Your China plans that have been put on hold--because of little Malachi.
*Your simple daily life's routine that has been put o hold--because of little Malachi.
*Your opportunity to let so many see what true love is really all about--because of little Malachi.
*Your love for each other that is now split between your little one at home and--your little Malachi.
*Your Lord's full undivided love, concern, compassion, and attention that is being extended to both of you--because of little Malachi.

Obviously, the list of reasons goes on and on, but no matter what we cold add to this list our Lord is in and through every facet, every turn, every victory, every setback, every uncertainty, and every tear, as He sees your love for your little one--your Malachi. Please know that as all of us go through this with you, you are going to have an amazing Christmas because of our Amazing Lord.

We received this letter today and not a moment too soon. Little notes of encouragement have been increasingly more important to us as we continue to endure NICU life and a child in unstable conditions. There is no longer a "normal" for us. Reminders of God's goodness and holiness are constantly necessary day in and day out. Thank you for those reminders!

It was a very, very weird afternoon, sitting at Malachi's bedside. He was sedated and completely unaware of his surroundings. He didn't have his eyes open so he couldn't see us. He can't hear us because he can't hear. He won't remember his first Christmas. I was getting sick to my tummy just sitting there and hotspots on my cheeks (which I've been getting more often as I think of Malachi). It was then that we decided we would spend as much of Christmas with Emerson as we could. I will be up to the hospital early in the morning before Emerson wakes up.

This is where we are, for now...

Therefore, since through God's mercy we have this ministry

My brother-in-law Brian thought I could use a small respite from our current situation and invited me to join him last night at the IU game. I wish I could say this post was about how well Indiana played last night, but I don’t want to be a huge liar. A couple of friends of his (sorry to Brian’s friends for completely blanking on their names) carpooled with us to the game and it happened to come out during our conversations on the trip down that I had a son in Riley Children’s hospital. We were chatting in a restaurant that we stopped at for quick bite. Well, apparently I was loud enough so that people in the booths around me could hear me. I wasn’t trying to be loud but anyone who knows me knows that I probably got loud without trying. We all got up to leave and were making our way to the van and a lady stopped one of Brian’s friends and said that she had over heard us talking and she would pray for my family and baby Chi. When I got in the van he told me what she had said. It reiterated to me that my wife and I have a ministry even now. God has provided us a way to reach others that we would have never reached before. I believe God has been preparing us for ministry but I don't think we should narrow it down like we as Christians tend to. Yeah, we thought China was going to be our ministry and maybe that is still in our future. We also thought maybe our ministry would just be to our son and it definitely will be. But we also have this ministry to others through this blog. We have a ministry to the hospital staff and the other families in the NICU. We have a ministry to both Marissa’s and my direct family. And lately it’s been made very clear that we have a ministry to total strangers that happen to listen in on our conversations.

That leads to another thing that came to my attention from that moment in the restaurant. How many times do I talk in public and say frivolous insignificant rubbish and don’t think about who is listening? If we just thought about what we were saying and decided to say godly edifying things how many more people could we reach without really even trying. That’s not to say we shouldn't go out of our way to try to reach out to strangers, but oh how I really wander how often some one is listening in and hears me say something about my Lord and then moments later they hear me say something that doesn't glorify or bring honor to him. Wow, so a simple trip to a basketball game turned out to be a lesson from my Savior. He has been doing that so much lately, teaching me in ways I was never expecting.

Prayer List

If you are praying for our family and especially for Mr. Malachi. Please add your name to the list at the following website:

http://etherpad.com/QmUzFnJqwV

I have gotten notice that they will be closing the site soon, so I'd like to get a "final" list and print it off and hang it on the wall next to Malachi's wall as a testimony of God's people who are praying for our little boy.

Thank you.

12/22/2009

so today was a very eventful day for Malachi.

At 8:30 this morning they took him in for an upper GI small bowel follow through to check for reflux. Sure enough, as we were suspecting, it is pretty significant. He has been able to keep all of his feeds in his system the past few weeks because his meals are put into his belly over 90 minutes of time. Basically, this means that when they insert his G-tube for direct access feeding, they will also do what is called a Nissen fundoplication. This will most likely take place next week sometime.

When I arrived on the scene there were quite a few people and a couple extra machines standing around Malachi's bed. It's the kind of scene that makes you feel like you've just been punched in the gut.
When I got to Chi's bedside, I realized the fellow was doing an echocardiogram to evaluate the bloodflow going through the sano shunt they placed during heart surgery which takes blood from the heart into the lungs. They did this for roughly an hour, poor guy. They weren't done yet... They waited around for the actual cardiologist who proceeded to evaluate him and take some specific measurements. Nope, still not done. THEN, they added some nitric oxide to his airway and took more measurements. They believe this helped, so they are starting him on the generic viagra to help increase bloodflow through the sano shunt. Apparently, it hadn't kicked in yet and he had a crisis event this evening regarding his desats. They are giving him nitric oxide through his ET tube and will continue to do so for 12 hours. At that point, they will begin weaning him and will keep him on at least a small amount of it for the next several days.

Also, they did give an interpretation of his brain MRI. The doctors are not completely sure how the findings will impact Malachi, but he stated that his life expectancy is not directly compromised by any brain abnormalities. On the MRI they found bilateral subdural hematomas of the frontal lobe (small brain bleeds that no longer seem to be active), diminished white matter, and thinning of his corpus callosum. So, thats today. I can't even begin to fathom what our tomorrow looks like.

A few pictures: Not sure why this uploaded sideways or upside down, but you can see the central line catheter as well as his chest scar from surgery.


The one with the cute gym socks ;)

more desats

^{I just got a call from the hospital. Malachi's oxygen saturation levels are once again dropping. He had been in the 50% level for roughly 20 minutes when they had called. By the end of the conversation with the doctor, he had started to be back up into the 70s, but we were not sure how long he would stay there before dropping again. They are going to give him some nitric oxide to help increase the flow of blood from his heart to his lungs. Right now, this is what the staff is thinking is the biggest factor in his oxygen desaturations. I will hopefully hear from them by 11:00 with an update regarding Malachi's condition.}

dr called... hopefully teh nitric oxide will do the trick... he's "stable" they will keep him on the nitric oxide for 12 hours and then try to wean to a small amount... but he will be on the direct gas for several days at that low dose or whatever

Merry Christmas!

12/21/2009

Today was a better day. A much better day.

I got to the hospital JUST in time for rounds. I like that I'm getting into a routine with Dr. Engle where he kind of gives me an update as far as what to expect for things coming up on the horizon. We have our little chat and update and THEN the nurse practitioner gets to do her rundown of the last 24 hours and recaps the meds and different gas and blood levels, all the technical stuff ;). Usually if I am unable to make it to rounds, I can speak face-to-face with either the NP or doctor sometime that afternoon as they may walk through our module. Even if they are on a mission, they are more than willing to take the time to answer questions and tell you any concerns they have for your child at that time.

Malachi's heart rate was much lower today. Instead of the 220 range that he was in, he was in the 90-110 range. He was a SLEEPY boy. Understandable though. Yesterday they decided to do the central line around 11:15a or so. They stopped the feeds at that time. Actually, they were 15 minutes or so into his 11:00 feeding and they stopped it and pulled the formula back out. POOR GUY!!! He was NOT happy. Even a dose of Versed wasn't able to sedate him at that time. He was hungry all day and probably didn't sleep for more than 10 minutes at a time. Today was a catch up day. He was out all morning and I loved every minute of holding him in my arms.

Even though his heart rate is back to a normal range, cardiology is definitely not out of the picture. Dr. Engle is concerned that his heart may be contributing to his low oxygen saturation levels. Cardiology is to take a look at the last couple echocardiograms to see if they can get a better look at the blood flow in the sano shunt that they placed during open heart surgery to take blood from the heart to the lungs. If they cannot get reliable enough info from the echo, then they will most likely schedule a cardiac catheterization for a more detailed analysis.

While he is intubated, they did an MRI of his brain today. They are looking at the brain as a whole and also the brain stem more specifically. Dr. Engle also stated that he is curious to see the texture of his brain and whether it has the proper peaks and valleys, or if it's somewhat smooth. We will hopefully get the results of this tomorrow or the following day. Also, at 8:30 tomorrow morning, he will have a upper GI small bowel follow through to evaluate his reflux and other digestive system things. If his reflux proves to be a problem, they will be doing a Nissen fundoplication with the gastrostomy tube. Also, before he is completely anesthetized for the g-tube surgery, they will do a flexible bronchoscopy to evaluate his ability to move air through his airway. If this proves to be a troublesome area for him, then while he is in surgery at that time they will do a tracheostomy to help him breathe.

10:00

Malachi update: They were successful with the central line insertion. Originally, they were planning on doing a more permanent line, but there was some debate as the time for surgery drew closer. When they were told that his urine culture had been positive for bacteria growth, they quickly decided a temporary line should be in place as the more permanent is more of a risk for infection. The neonatology staff is still hoping that this will not be a long-term thing by any stretch and that they will be able to resolve his crazy heart rate business from today.

At this time he's still paralyzed as the meds they gave him for surgery haven't worn off yet. so he's stable... intubated... paralyzed.. the usual post-surgery routine. He will only be paralyzed until his meds wear off though. It won't be a three or four-day stretch of time like it was after his open heart surgery. Also, the plan is for him to be extubated as soon as he can tolerate it.

This is definitely not how we were planning on today going. We were not expecting ANY of this. It's one thing to have a couple days to prepare yourself for an upcoming surgery (and even then it's not easy). Needless to say, this was rough! I really broke down crying when I handed my baby over to the nurse to get him ready to be intubated. Looking back, I think the staff thought I was solely upset and distraught with the fact that he needed to be hooked up to the ventilator again. Honestly, I was fine with him being back on the vent. (Don't get me wrong, I hated seeing him gagging and coughing on it now that he's had it out for almost two weeks, but I could handle that). I was having a hard time dealing with the fact that the problems that have been "fixed" with his heart and with his nose and with his trachea/esophagus aren't over with. He had being having some weird heart rhythms and that sort of thing, but they seemed to have been resolved. I was just completely blindsided by this. Hopefully tomorrow I can kind of see what the plan of action is for the next few days to a week. I know on his agenda (before this event) he had a bronchoscopy, a dye study (for reflux), and then probably G-tube and tracheostomy. We HAD been thinking the week after Christmas, now I'm not so sure, so we'll see.

Thank you for your continued prayers. We have been encouraged by the kind notes and comments we have received throughout the day. It's amazing to know that we are not alone in this. In the words of a close family friend's daughter (4 yrs old), "We need to pray for Baby Chi because he is sick and needs God's help." Amen!

630 waiting

What an encouragement to eavesdrop on a conversation in the waiting
room regarding Gods goodness in the midst of trials. I needed that
verbal reminder from a believer I had never seen before today. God is
good. He is faithful to those who call Him Lord. He is always true. He
is the One who holds our baby in His hands. He has ordained Malachis
days and knows him inside and out.

530

Went to see Malachi after the intubation. He of course fought it tooth
and nail. After some sedation they were able to place the tube in his
throat successfully. The surgeon still isn't at the bedside yet. John
and i said goodbye and are going to get some fresh air and find
something to eat. That's all for now.

400

They just shut down the module for malachi's surgery. They decided to
do it bedside instead of taking Malachi to the operating room. Right
now they are in the process of intubating him. I think we have the
option to go back in to see him before surgery gets to the bed. John
may go in, but I'm just going to wait until everything is finished.
I'm not sure if I can say goodbye twice. They are placing a more
permanent tunnel central line. There is more of a risk right now since
he is already having a rapid heart rate and arrhythmias, but he NEEDS
to have a central line for the meds he needs as his peripheral ivs do
not last long and cannot tolerate much.

1230

Central line will be placed whenever the OR is ready for him. He is
hungry as they stopped his feeds in prep for surgery. He will be
intubated again. Let you know when they take him for surgery.

10:30

John has made it here and is filled in. Cardiology will wait until
12:00 to make any further recommendations. I need to put food in my
belly while John sits with chi. Thanks for praying.

9:00 update

Heart rate is now in the 200-240 range. He is getting some more
cardiac meds now. Not sure how long it should take for meds to kick
in. A dose of versed has made him sleepy. Oxygen levels are good at
65%. I'm at the hospital now. John will be joining me later.

urgent prayer needed!!

We just got a call from the hospital informing us that Malachi has had a sustained heart rate in the 240s since 6:00 A.M. (It's 7:00 as I write this). He cannot have his heart rate staying this fast as it will be hard for his little body to handle it. They have given him a couple different doses of medication and he is still not coming out of it. At this point, his oxygen level and respiratory rate are "okay" for him, but they are obviously going to keep a close eye on him this morning. If he were to "code" at this point, the only thing they can do is use the paddles. Please pray this morning and encourage your local churches to pray as well. I'm on my way to the hospital.

low sats

I had a nice chat with Dr. Engle today. He took the time to answer any and all questions that came up over the past couple of days, knowing I had been unable to be present at the hospital. By the way, I woke up not feeling A HINT of sickness and was able to see my baby (definitely an answer to prayer!)... I had all intentions of writing about that conversation tonight, but it will have to wait until tomorrow.

I just got off the phone with the nurse and it's not very good news. For the last hour or so, he has been on 100% oxygen. Normally, this is not a huge deal, but because of his heart disease Cardiology was hesitant to give him that much oxygen. Pray that this will be okay for Malachi. Cardiology also wants Chi's oxygen saturation levels (sats) to be at or above 70%. Tonight, his sats dropped to the 40s and he did not recover from this episode after suctioning. They were able to bring him up out of the 40s, but he is still lingering around the 65-low 70% range. They took an x-ray to check out the lung status and our nurse said that they didn't think it looked much different than the last chest film that they have. They are going to give him an extra dose of lasix to see if that helps at all. thankfully, the doctor that is on duty tonight is the one who is most familiar with Malachi's case. If his sats do not increase and he consistently is at a low level, they may consider increasing his Vapotherm to 5 or switching to some other type of respiratory support. The nurse didn't know anything about changes at this time, but she will call if anything happens.

There are many things which can be attended to, but the MOST PRESSING matter is that he can get enough oxygen flowing and that the doctors can figure out the obstruction and work to resolve the present. Thank you.

12/18/2009 update

So, this is officially the most disconnected I've felt from Malachi since he was taken from the delivery room less than five minutes after his birth. The last time I saw him was around midnight on December 16th. Even then, I was scared to touch him because I had started feeling sick that day. It is not natural for a mom to be apart from her sick child. I hate not being physically there to see him and see the nurses doing their job and all of that. I can't do much when I'm there, but at least I can be there and put my hand on his head or his chest and let him know that his mommy is close. I am very thankful for the nurse practitioners going out of their way to call me throughout the day with changes in his care and that sort of thing. At least it gives me a chance to ask questions to the people DIRECTLY involved in the decision-making of my son's care.

Malachi is still on three antibiotics. Thankfully, his IV has been holding out and they haven't had to reinsert IVs on a daily basis. The NP is hopeful that his blood culture will show to be negative for bacteria growth and he can have one or two of them discontinued here soon.

We don't know all the specifics regarding the CT scan they did yesterday, but there is some abnormality of the bony structure of his inner ear. The initial report said it seemed to be underdeveloped. How this plays out practically with his hearing impairment, we still cannot be 100%.

Tonight he has been having some difficulty again with keep his oxygen saturation levels high. It is necessary for his saturation levels to stay at or above 70% and they are having difficulty maintaining that level. They have the oxygen coming through his Vapotherm cannula at 52% right now. At this time, they have ordered a chest x-ray to see if there are any obvious problems with his airways or to see if he just has a bunch of gunk in his lungs. They may do a deep suction down his throat to see if that helps at all.

The uncertainty of the situation and just not being around him the past couple days is taking a toll on me emotionally tonight, especially getting off the phone and realizing he is struggling tonight. Please pray for continued strength and grace for our family to handle this trying time. (On a brighter note, I am feeling well enough to go see him in the morning. My plan for the day: Wake up, Shower, Hospital. I NEED to see my baby.)

our first infection

Malachi is sick. He has some sort of an infection in his blood stream. They had originally sent two cultures and only one of them is growing bacteria, so they were hoping that maybe it was some sort of outside contaminant that caused the bacteria to grow on the culture. But, his urine culture proved to be positive for infection as well (UTI), so they will continue him on two separate antibiotics sending samples to the lab every 24 hours until it comes back bacteria free. It will, however, probably take him longer than most babies to recover from this sort of thing (due to the absent thymus). Because of the difficulty staff has had with inserting and maintaining his IVs, another central line would be ideal (done by the surgery team). Right now this is not an option for Malachi because of the current infection his body is fighting. His electrolytes are also kind of "off." So they will be giving him different supplements and things to get that back in order. The echocardiogram that they ordered came back showing no source of infection directly related to the heart. This is a very good thing because there was a possibility after surgery that the shunt could become blocked off. Thankfully, that does not seem to be the case. They had planned for today a CT scan of his head to evaluate the bony structure of his ears. Hopefully we should hear back if there are any structural abnormalities tomorrow. John said it was probably best that I was not at the hospital today because he was VERY VERY irritable and when they were trying to take CT images he was red from screaming and crying and arching his back up off the table. They decided that that was enough testing for the day and that he had been through enough that they were going to postpone his brain MRI. Most likely, they will do this early next week.

*Malachi--comfort and strength to fight off infection while trying to breath and digest food.
*Marissa and Emerson--recover from sickness.
*John--avoid catching whatever the rest of us have.

Happy 3rd Anniversary!

Not quite how we envisioned our 3^rd anniversary, but we were together and that’s what matters right? With that said, we spent most of our evening in the NICU. We were invited to a free viewing of the BlindSide and pizza, so that was nice. Unfortunately, we received a call from the hospital during the middle of the showing confirming that there was bacteria in Malachi’s blood stream. The movie put me in an even MORE protective state regarding Malachi, so I went to the hospital while John went to pick up Emerson. Here's the rundown of our first three years as man and wife (and the two years prior):

Dating:

Engaged:

Officially man and wife:

We graduate college, found out we were pregnant, moved to brownsburg, moved to a rental house in brownsburg.

Our first actual house:

Our first baby! (Emerson Grace 12/29/2007):
Our first loss of a child--Jordan miscarried at three months:

Sold our house (no picture) and moved to an apartment in preparation for missionary work in China. (Now no longer on our agenda as long as Malachi is with us.)

Our first son, Malachi! Born 10/27/2009 and still in the NICU:

Through it all, we've clung tightly to one another and even more so to our God. Praise be to Him for choosing us for one another. I love you, John!

12/16/2009 "minor" setbacks

So this week has been kind of rough for Malachi. We are still in the process of trying to find the right medications and dosages to control his heart arrhythmias as well as getting him stable from a respiratory standpoint. He had been weaned to Vapotherm at 4 down to 3. Then from Vapotherm 3 down to straight nasal cannula (he was at times needing up to 40% oxygen with the NC). Last night he had a prolonged respiratory event where his respiratory rate was ranging from 100-110 with very labored breathing. They put him back on Vapotherm 3 and gave him an albuterol treatment. He seemed to be doing better with it today, but his lungs are very very gunky.

Also, Malachi has proven to have not very good veins for his peripheral IVs. Because of his fever the other day, PIVs are super important so that antibiotics can be administered. They were giving him vancomycin as a general antibiotic, but it has a pretty harsh effect on Malachi's veins. He has gotten three IVs placed in the last three days (they attempted a PICC line last Friday 3 times with no luck) AND the nurse tonight will probably try to insert another IV tonight kind of as backup in case the one in his arm fails to flush later. :(

Over the past two days, his fever has subsided BUT we received a call after we left the hospital tonight that his blood cultures were growing bacteria. The nurses mentioned sepsis which can lead to severe problems, especially in Malachi's situation. He will be very sick for a while and I'm sure they will want to keep him pretty medicated with antibiotics and sedation-type medications. Please pray that Malachi will be able to ward of this infection. Because the infection is traveling in his blood stream, it is most likely causing lots of functions to work at a slower rate. For instance, usually when they pull the "leftover" milk out of his tummy before starting another feed, there is 0-1 ml of fluid. Tonight when she did it for his 11:00pm feeding, there was easily 9-10 ml that came out of his tummy. The NICU doctor wants to be sure that the bacteria isn't taking up root or affecting his heart, so they have ordered and echocadiogram for the morning.

He is sick, Emerson is sick, and now I am sick. Please pray for all of us to get better and for me to be able to handle not going to the hospital tomorrow. My heart hurts just thinking about it. It's late, but I needed to get all this out of my head before falling asleep. We also met with developmental peds and physical therapy today. I will look back at my notes and probably add more about that tomorrow. Thank you again for your prayers.

Emerson's ABC Book

Click here to view this photo book larger

12/15/2009

Not much by way of update. Malachi had a fever this morning of 100.9. They started him on a "just in case" antibiotic while they sent blood and urine cultures off to the lab. In a couple days if no bacteria has grown they will take him off the antibiotic, but if something has grown on the culture then they will switch him to a more specific antibiotic to take care of the problem. Please be in continued prayer that he does not have some sort of an infection. Because he does not have a thymus, it is pretty safe to assume that he has a very weak immune system and little tolerance for viral or bacterial infection.

Progress: He was completely weaned from his Vapotherm today and is on straight nasal cannula. WOO HOO! Hopefully they will be able to complete a sleep study in the next couple of days to evaluate for airway obstruction and get a more accurate picture as to where our little guy stands. Worst case scenario, he will go home with a trach which would bypass his entire upper airway in order to aide in the whole breathing process.

Consultations: Sometime this week (probably tomorrow) occupational therapy, physical therapy, and developmental pediatrics will be stopping by for their initial evaluation for Malachi. Of course, departments just tend to stop in when it's convenient for them, so I don't know if I will even be able to actually meet with them.

Social Life: Now that winter is coming on strong and all of the sickness and illnesses that come along with it, our little Sharbaugh family is going to need to be MUCH more careful about who we hang around with. It is imperative for Malachi that we all stay healthy. Unfortunately, this may mean that we need to be somewhat withdrawn from society until we know the severity of Malachi's immune system situation and for John and I to be able to visit our baby. So if you do not see us out and about for a while, this is why. Crowds and lots of people are to be avoided at this point. We will obviously still need people to help us watch Emerson and that sort of thing, BUT please only offer if you are physically well and do NOT feel bad about canceling on us. There are many people who are willing to help us out ;).

Obviously, feel free to correspond with us!! E-mail and facebook are good. Also, cards and that sort of thing can be sent to us as well to keep us going through the winter. Really, any feedback at this point is much appreciated. Even if it's just a quick note to say you're praying. I'm really not begging, I promise ;) Below is a PO Box we have been allowed to use. For friends and family whom we actually know, you can email me at marissasharbaugh@gmail.com for our home address.

John and Marissa Sharbaugh
PO Box 215
Brownsburg, IN 46112

a good day

Mondays are my long day at the hospital. Right now it is unrealistic for me to be able to be at the hospital for rounds every day of the week, but Mondays are especially important so that I can start the week on the same page as the doctors and prepare myself for what the week MAY hold. Many things are dependent, obviously, on how stable he is. He was pretty stable from a heart standpoint over the weekend (what an answer to prayer!) Even our doctor had to admit to the fact that God answers prayer. So many people are praying for our baby to an amazingly powerful God who is VERY interested in bringing Himself glory. How amazing that He has chosen our little boy to help in that cause! Because he did so well over the weekend, they are going to hold out with putting in another central line. The main reason for wanting that was to be able to administer meds on an emergency basis if his heart continued to have rates in the 270-300/min range. Right now his only access is another scalp IV. They have begun to wean him from Vapotherm and will administer a sleep study when he is successfully off Vapotherm (from what I gathered, he needs to be completely off Vapotherm to get an accurate analysis with the sleep study). Also in the near future oral feeds will be attempted. If they prove to be unsuccessful, then a gastrostomy tube (G-tube) will be next. Not sure how they will timeline the sleep study with the G-tube. He will need to be reintubated for surgery, so we'll see how that goes. Those are the main things for this week.

After the NICU docs rounded, I started helping out with Chi's 11:00 care. I changed a dirty dipe, took a temp, did his bath, and dressed him in a snazzy long-sleeve "i love mommy" outfit. Pretty sharp if I do say so myself! By then we were past his scheduled lunch, his nose had been suctioned, and he hated bathtime so he wasn't TOO happy! I was more than happy to scoop him up and cuddle him while he ate for the next 90 minutes ;) A couple hours later I needed to give him up because the stench of his dipe was awful! Apparently with Malachi there is a trigger in the back of his throat which when it is suctioned causes him to fill his pants. He still needs to be suctioned every now and then because he can't handle the secretions completely on his own and if they are not removed, he desats below 70% and the alarms start dinging. The worst episode this afternoon while in my arms he got down to 38% and required some work to get him to come back up above the 70 level. Scary stuff when your child starts to fade to a pale, blueish color while laying in your arms. This is why he is still at Riley.

Items to pray for this week:
*Malachi's continued progress with his heart issues.
*The ability for him to swallow on his own and tolerate oral feeding.
*Respiratory issues can be addressed and resolved.

preparing

I think the doctors were surprised at how not surprised we were when Malachi was born and we discovered that he would be classified as special needs. There was nothing seemingly wrong with the pregnancy. We were completely unaware until he was rushed to the NICU within five minutes of delivery. The next day we were informed of Chi’s heart defects and he was transferred to the Children’s Hospital. The following week we were bombarded with each new diagnosis. Throughout that week, we were reminded of some interesting things that had happened to us early in this pregnancy.

For instance, we were starting to help out with the youth group at our church and we were watching a video series by the preacher David Ring. He was born with cerebral palsy, although he was mentally intact. He was orphaned at age 14 and in and out of different homes. Among many good points he had, he talked about how God was able to use his “disadvantages” or "weaknesses" or "special need" to glorify God.

On a completely unrelated occasion, I was taken aback by the song “The Last Ones” by Matthew West. Some of the lyrics are as follows:

My friend Taylor she's an angel
Ten years old and beautiful
She's a living, breathing miracle
And she proves it everyday

Because the odds were stacked against her
From the day that she arrived here
And the doctors told her mom and dad
That she'd always be that way

And I confess when I first met her I was thinking life's not fair
But then she wrapped her arms around my neck and it all became so clear

God bless the last ones
God bless the last ones

Maybe the last ones are the lucky ones
And the ones who got this whole thing figured out
Cause when they go looking for something beautiful
They start looking from the inside out

I was about three months pregnant when I specifically had asked John to listen to that song. He then verbalized to me that He thought God may be preparing us for raising a child with special needs. How little did we know!! (for a quick glimpse into our thoughts regarding children, check out this entry I wrote when we found out we were pregnant with Malachi)

The bible says that a family is a good thing and children are a reward from Him (Psalm 127:3). Christians in general would agree to that--as long as its on their terms. Most people want to dictate the number and gender of their children AND obviously be healthy with no mental or physical disabilities. We are, however, by no means saying that it is wrong to want or pray for a healthy baby. Of course, it is our deepest desire that Malachi continues to improve and get healthy! But as evidenced in the life of David Ring, it's through his "disability" that he has been able to glorify God. In one of his messages, he stated that it should be an honor and we should thank God for an opportunity like the one we have been given. It along those lines that we realized we have been chosen by God to be the steward of Baby Chi. We are not saying that we are happy that Malachi was struggling to breathe or that he has a heart defect or that he has been physically hurting; we are not saying that at all. But to Him be the glory!

Malachi currently requires and will continue to need a great amount of medical care and attention and God has entrusted us to take care of him. We are looking forward to all those moments when we're thinking one thing or viewing a situation one way and Malachi says something to completely blow us away. I am sure that we will many times have our eyes opened in ways we never could have foretold. We want to and look forward to teaching Malachi about the Lord and what a great God we serve who has protected him thus far, but how much have we already learned from this little baby boy!! We can't even fathom what more he has in store for us.

His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?"

"Neither this man nor his parents sinned," said Jesus,

"but this happened so that the work of God might be displayed in his life.

(John 9:2-3)

12/11/2009 update (video)

I got to hold Mr. Malachi today for like THREE HOURS!! It was super enjoyable except for the time when he desated down to the 30s and started turning slightly blue. Scary stuff! Thankfully, his heart rhythm was pretty consistent throughout the day and the saturation levels were resolved to greater than 70 after a bit of suctioning from his mouth and throat. He is still on Vapotherm for his respiratory therapy, but all of his meds are oral so he does not REQUIRE an IV. This is good because they were unable to flush one of his access points last night and they fought and fought with him to try to redo one, but were unsuccessful.

They were trying to do a PICC line insertion when John got to Chi's bed, so he went down to the Ronald McDonald House to find a snack. When he got down there one of the workers looked a bit overwhelmed. She had told John that none of her volunteers for the night showed up. He decided to put on some gloves and help her slice up the 15-20 pounds of ham that had been donated for dinner and lunches. By the time he had finished helping out, he was able to go in and see baby Chi. Unfortunately, the PICC line was not able to be successfully inserted, so he will need to have a central line put in again sometime this weekend.

Look at those little legs!
Snoozin' on his belly...

Snuggling with mommy...


His hoarse, raspy little cry from being intubated for the last month and a half...

new camera!

my first "photo shoot"... can't wait to learn how to actually use this baby:


first ornament shot:

Emerson's "First Christmas ornament:

Malachi's "First Christmas ornament:

extubation day!

Not the best picture in the world, but he's sporting the nasal cannula now instead of the huge ventilator tubes shoved down his throat. He was pretty mad after they extubated, so they've kept him pretty sedated today. Today was the first day in his life that he has laid on his tummy like this. As much as I just wanted to pick him up and snuggle, we aren't really allowed to stimulate him too much, even with touch. Doesn't he look so big in the below picture? He's just over eight pounds these days.

We had our care conference with our NICU doctor, our nurse practitioner, our nurse, someone from genetics, the social worker, and cardiology. We talked about Chi's current situation and what things still need to be addressed. The biggest thing for this hospitalization will be figuring out his heart rhythm (which doesn't seem to hold to the same rate or rhythm for longer than five minutes at a time when he isn't sedated). If the trigger of his rhythm can be pinpointed, then meds can be adjusted appropriately. At this time, it seems as if he will be on meds to keep his heart rate low (to avoid the episodes of supraventricular tachycardia with rates in the 270-300 range) and then a pacemaker implantation to tackle the episodes of extreme bradycardia caused by the meds to jolt the heart back on track. We are still going to just be addressing things one at a time as they arise, but the heart arrhythmia is the most pressing matter. Pray for Chi's heart!