the tree is up!

So, I've realized this year that I'm not the biggest fan of actually decorating the tree. Don't get me wrong. I love a decorated, beautiful Christmas tree, as long as I'm not the one doing it. Thankfully, I have a husband who will take the lead and I can just "assist." It's probably easier on both of us. I do, however, like to do some of the other little pieces of decorating around our home. Last year, Emerson was too little to really "help" with all of the Christmas stuff, but this year she was up for the challenge! Within the first TWO MINUTES of her helping with ornaments, two were smashed to pieces. It's okay though, it was only my FAVORITE brown/blue glass ornament that we made as favors for our wedding. Actually, in retrospect it was pretty funny to think about her raising the two bulbs above her head and just CLANKING them together into pieces. (no one was injured and the mess was immediately swept up...)

Emma's eyes lit up when she saw the stockings in our Christmas tote. "SOCKS!" and she attempted to wear them. Unfortunately, they were too hard to get on and she gave up.

She did a great job in helping me with the glass containers filled with bulbs. When Grandma Sharbaugh came to pick her up this morning before my appointment, Emma was quick to point out to her that "Emma do it" while pointing to the ledge they are sitting on.

The tinsel was fun to play in too.

And, finally, no tree is complete without a star on top!

the tree is up!

So, I've realized this year that I'm not the biggest fan of actually decorating the tree. Don't get me wrong. I love a decorated, beautiful Christmas tree, as long as I'm not the one doing it. Thankfully, I have a husband who will take the lead and I can just "assist." It's probably easier on both of us. I do, however, like to do some of the other little pieces of decorating around our home. Last year, Emerson was too little to really "help" with all of the Christmas stuff, but this year she was up for the challenge! Within the first TWO MINUTES of her helping with ornaments, two were smashed to pieces. It's okay though, it was only my FAVORITE brown/blue glass ornament that we made as favors for our wedding. Actually, in retrospect it was pretty funny to think about her raising the two bulbs above her head and just CLANKING them together into pieces. (no one was injured and the mess was immediately swept up...)

Emma's eyes lit up when she saw the stockings in our Christmas tote. "SOCKS!" and she attempted to wear them. Unfortunately, they were too hard to get on and she gave up.

She did a great job in helping me with the glass containers filled with bulbs. When Grandma Sharbaugh came to pick her up this morning before my appointment, Emma was quick to point out to her that "Emma do it" while pointing to the ledge they are sitting on.

The tinsel was fun to play in too.

And, finally, no tree is complete without a star on top!

11/29/2009

Nothing too much to update. Weekends are pretty slow and uneventful at the hospital unless something major happens to your little one. Malachi has had a pretty good day. He is still having difficulties at times with keeping his oxygen saturation levels at or above 70 without help from the ventilator. It was John's "turn" to hold our baby and, despite the fact that his rear fell asleep in the chair after a while, he got to hold him for two hours! There were a few times where his sats fell below 70, but after a while Malachi calmed down enough to take a nap in daddy's arms. Super precious. I have pictures, but not with me at the moment, so they will come at a later date.

I have my postpartum checkup tomorrow morning at 9:00 and then I will be off to the hospital. I am hoping to arrive before the NICU team gets to Malachi during their morning rounds. I like being able to speak with the medical staff face to face. Pray that my doctor's visit doesn't take forever and that I can maybe even get in a little early.

We are both definitely still very tired--and we haven't even gotten to bring him home yet! We are sleeping at night, but it's not very restful. We definitely do not feel refreshed when we wake up in the morning. John will be back to a normal schedule this week at work. Every now and then we have fleeting doubts that creep in. Thankfully, God doesn't let the moments of doubt linger for too long before reminding us of His truth. He allows them to hang around just enough to remind us that He is still there and still in control and He has ordained each moment.

A friend of mine sent us a CD by Sovereign Grace Ministries called Come Weary Saints. I often listen to this CD on the way to the hospital to see Malachi. It is a wonderful reminder of God's truth while enduring this trial He has set forth in our lives. One song in particular I really like is "Every Day." The second verse and chorus can be heard at http://www.sovereigngracemusic.org/albums/category/sovereign_grace_music/come_weary_saints. The lyrics for the entire song are as follows:

In Your grace, You know where I walk
You know when I fall
You know all my ways
In Your love, I know You allow
What I cannot grasp
To bring You praise

Thank You for the trials
For the fire, for the pain
Thank You for the strength
Knowing You have ordained
Every day

Your great power is shown when I’m weak
You help me to see
Your love in this place
Perfect peace is filling my mind
And drawing my heart
To praise You again

In my uncertainty, Your Word is all I need
To know You’re with me every day

11/29/2009

Nothing too much to update. Weekends are pretty slow and uneventful at the hospital unless something major happens to your little one. Malachi has had a pretty good day. He is still having difficulties at times with keeping his oxygen saturation levels at or above 70 without help from the ventilator. It was John's "turn" to hold our baby and, despite the fact that his rear fell asleep in the chair after a while, he got to hold him for two hours! There were a few times where his sats fell below 70, but after a while Malachi calmed down enough to take a nap in daddy's arms. Super precious. I have pictures, but not with me at the moment, so they will come at a later date.

I have my postpartum checkup tomorrow morning at 9:00 and then I will be off to the hospital. I am hoping to arrive before the NICU team gets to Malachi during their morning rounds. I like being able to speak with the medical staff face to face. Pray that my doctor's visit doesn't take forever and that I can maybe even get in a little early.

We are both definitely still very tired--and we haven't even gotten to bring him home yet! We are sleeping at night, but it's not very restful. We definitely do not feel refreshed when we wake up in the morning. John will be back to a normal schedule this week at work. Every now and then we have fleeting doubts that creep in. Thankfully, God doesn't let the moments of doubt linger for too long before reminding us of His truth. He allows them to hang around just enough to remind us that He is still there and still in control and He has ordained each moment.

A friend of mine sent us a CD by Sovereign Grace Ministries called Come Weary Saints. I often listen to this CD on the way to the hospital to see Malachi. It is a wonderful reminder of God's truth while enduring this trial He has set forth in our lives. One song in particular I really like is "Every Day." The second verse and chorus can be heard at http://www.sovereigngracemusic.org/albums/category/sovereign_grace_music/come_weary_saints. The lyrics for the entire song are as follows:

In Your grace, You know where I walk
You know when I fall
You know all my ways
In Your love, I know You allow
What I cannot grasp
To bring You praise

Thank You for the trials
For the fire, for the pain
Thank You for the strength
Knowing You have ordained
Every day

Your great power is shown when I’m weak
You help me to see
Your love in this place
Perfect peace is filling my mind
And drawing my heart
To praise You again

In my uncertainty, Your Word is all I need
To know You’re with me every day

11/28/2009 update

Not a good day for Malachi. He had low oxygen saturation levels throughout the night and this morning. He had poor circulation to his extremities and was enough cause for the cardiology team to order and echocardiogram to verify the status of the sano shunt they placed during surgery. The shunt is working fine; however, the heart itself does not have as much contractility as they would like. They may be starting him on a new medication for that. Also during these episodes, the nurses noticed some eye rolling which makes them consider what is called subclinical seizures. Apparently seizures are harder to notice in infants, so they have ordered an EEG to see if any seizure-like activity shows up on the scan. They are also going to be messing with his blood pressure medications. For the past few days he has been on a medicine to lower his BP. They stopped that medicine today and are considering a new medication to raise it.

Some people have asked how to get things to us (whether they be cards, notes of encouragement, etc.). So that we don't give out our home address to the world, things can be sent to the following po box:

John and Marissa Sharbaugh
PO Box 215
Brownsburg, IN 46112

Still, most importantly, we covet your prayers. The stress of the NICU and the complexity of Malachi's case is definitely taking a toll on us. It's very stressful to see your baby in so much pain on a daily basis. The only time he looks comfortable is when he is sleeping. It's really, really hard.

John just called the nurse that will be taking care of Chi for the night and she said that he has been stable and no major concerns have arisen. Hopefully we can sleep easy tonight. (we are in the market for a new mattress though... any suggestions?)

A few more pictures:

Today was the first time I had personally witnessed a tear from our little man. Here you can kind of see the streak where the tear ran down his cheek... It made me one sad mama to see him in such bad shape. He pretty much stayed in that state of complete uncomfortableness for the majority of the day.


On the homefront, we have one happy, healthly, amazing, thriving little girl!! Did I mention that she has the most heart-melting smile EVER!

11/28/2009 update

Not a good day for Malachi. He had low oxygen saturation levels throughout the night and this morning. He had poor circulation to his extremities and was enough cause for the cardiology team to order and echocardiogram to verify the status of the sano shunt they placed during surgery. The shunt is working fine; however, the heart itself does not have as much contractility as they would like. They may be starting him on a new medication for that. Also during these episodes, the nurses noticed some eye rolling which makes them consider what is called subclinical seizures. Apparently seizures are harder to notice in infants, so they have ordered an EEG to see if any seizure-like activity shows up on the scan. They are also going to be messing with his blood pressure medications. For the past few days he has been on a medicine to lower his BP. They stopped that medicine today and are considering a new medication to raise it.

Some people have asked how to get things to us (whether they be cards, notes of encouragement, etc.). So that we don't give out our home address to the world, things can be sent to the following po box:

John and Marissa Sharbaugh
PO Box 215
Brownsburg, IN 46112

Still, most importantly, we covet your prayers. The stress of the NICU and the complexity of Malachi's case is definitely taking a toll on us. It's very stressful to see your baby in so much pain on a daily basis. The only time he looks comfortable is when he is sleeping. It's really, really hard.

John just called the nurse that will be taking care of Chi for the night and she said that he has been stable and no major concerns have arisen. Hopefully we can sleep easy tonight. (we are in the market for a new mattress though... any suggestions?)

A few more pictures:

Today was the first time I had personally witnessed a tear from our little man. Here you can kind of see the streak where the tear ran down his cheek... It made me one sad mama to see him in such bad shape. He pretty much stayed in that state of complete uncomfortableness for the majority of the day.


On the homefront, we have one happy, healthly, amazing, thriving little girl!! Did I mention that she has the most heart-melting smile EVER!

11/27/2009 One Month Birthday!!

Well, Happy Thanksgiving!

It's not exactly how we were planning on spending our first Thanksgiving--dividing our time between family and the hospital. I came to the hard realization that Chi doesn't really seem to be (for me anyway) a part of our family. Don't get me wrong, I love him more than words can even express, but our life is VERY segmented right now. We have a family of three at home (we haven't brought him home yet) and a family of three at the hospital (Emma isn't allowed to visit). One day we will all be together under the same roof... one day. Nonetheless, the time we spent at the hospital was just as precious to us as the time we were able to spend with John's side of the family. Unfortunately, it will probably be the same way during the Christmas holiday.

Malachi is still having some random arrythmias. He is currently on two different types of medications for his heart since the arrythmias began. These have obviously been the main concern the past few days. We haven't had a chance to sit down with the NICU docs and ask questions regarding the lab not being able to grow the cells properly in order for them to accurately get the information that they need for the chromosome analysis. Surely, three separate occasions should validate a cause for concern. One thing I've found online (granted, this is just through google searching and even then I was completely unsure as to what words I should be using within the search) is mitochondrial disease. Again, I haven't looked into it a whole lot, but I think it might be an option to put forth to the docs. Worst thing they can do is say, "You don't know what you're talking about." I'm sure I'll feel stupid for the moment, but I'd feel MUCH better knowing that I had said something.

We have decided to use a lot of our Christmas money to buy a decent digital SLR camera to capture the moments that we will have with Mr. Malachi. If you have any tips or pointers for us as we seriously look at things before making our purchase PLEASE leave a comment or email us at marissasharbaugh@gmail.com. We would love any advice.

A few random pictures I had yet to post:

Mr. Malachi with scalp IV in place. (of all the IVs, the scalp one weirds me out the most!)

One of the nurses brought in a light up thing that moves and plays music--he REALLY seems to enjoy it!

Some lovin' from daddy.

On Thanksgiving, I got to hold Chi for TWO HOURS!! Here's a shot from above. You can see the scalp IV again, but he grasped my finger basically the entire time. The next picture you can see how he just cuddled right in and slept peacefully in mommy's arms--a wonderful gift from God.


When we got to the hospital on Thanksgiving, this is how we found him--hooked up to the ECG monitors.

Another pic of him with the light/noise/movement thing.

And last but not least, a couple pics I was able to snap of miss emma playing with her cousins. The first one is her jumping off the stairs onto my lap and the second is her with the twins (she is closest in age to them of all her cousins--only a 6 month difference. I think she liked being the "older" cousin for a change!

11/27/2009 One Month Birthday!!

Well, Happy Thanksgiving!

It's not exactly how we were planning on spending our first Thanksgiving--dividing our time between family and the hospital. I came to the hard realization that Chi doesn't really seem to be (for me anyway) a part of our family. Don't get me wrong, I love him more than words can even express, but our life is VERY segmented right now. We have a family of three at home (we haven't brought him home yet) and a family of three at the hospital (Emma isn't allowed to visit). One day we will all be together under the same roof... one day. Nonetheless, the time we spent at the hospital was just as precious to us as the time we were able to spend with John's side of the family. Unfortunately, it will probably be the same way during the Christmas holiday.

Malachi is still having some random arrythmias. He is currently on two different types of medications for his heart since the arrythmias began. These have obviously been the main concern the past few days. We haven't had a chance to sit down with the NICU docs and ask questions regarding the lab not being able to grow the cells properly in order for them to accurately get the information that they need for the chromosome analysis. Surely, three separate occasions should validate a cause for concern. One thing I've found online (granted, this is just through google searching and even then I was completely unsure as to what words I should be using within the search) is mitochondrial disease. Again, I haven't looked into it a whole lot, but I think it might be an option to put forth to the docs. Worst thing they can do is say, "You don't know what you're talking about." I'm sure I'll feel stupid for the moment, but I'd feel MUCH better knowing that I had said something.

We have decided to use a lot of our Christmas money to buy a decent digital SLR camera to capture the moments that we will have with Mr. Malachi. If you have any tips or pointers for us as we seriously look at things before making our purchase PLEASE leave a comment or email us at marissasharbaugh@gmail.com. We would love any advice.

A few random pictures I had yet to post:

Mr. Malachi with scalp IV in place. (of all the IVs, the scalp one weirds me out the most!)

One of the nurses brought in a light up thing that moves and plays music--he REALLY seems to enjoy it!

Some lovin' from daddy.

On Thanksgiving, I got to hold Chi for TWO HOURS!! Here's a shot from above. You can see the scalp IV again, but he grasped my finger basically the entire time. The next picture you can see how he just cuddled right in and slept peacefully in mommy's arms--a wonderful gift from God.


When we got to the hospital on Thanksgiving, this is how we found him--hooked up to the ECG monitors.

Another pic of him with the light/noise/movement thing.

And last but not least, a couple pics I was able to snap of miss emma playing with her cousins. The first one is her jumping off the stairs onto my lap and the second is her with the twins (she is closest in age to them of all her cousins--only a 6 month difference. I think she liked being the "older" cousin for a change!

11/25/2009 update

Rough Day

Not much good news to share today. Last night Chi was consistently having arrhythmias through the night and John and I each were there when they occured at different times throughout the day. Last night he also had a bloody stool and because of that, they stopped his feeds. He missed two feeds (babies are NOT comfortable or happy when they are not being fed). They took some films of his abdomen and noticed some air on his colon, but nothing too abnormal or anything to be worried about. Thankfully they started his feeds again at 11:00 A.M. this morning. He seemed to tolerate it fine, but he did spit up after his 2:00 P.M. feed and then again during the feed where John was at the bedside. With the vomiting when John was there, Chi's oxygen levels decreased greatly (always really scary to see), but they were back to normal range when they suctioned out his ET-tube.

There were a few periods of time throughout the day though where he did seem to be completely at rest. One of our nurse practitioners commented to me that when Chi rests, he seems to truly be resting in the Lord. She's right. There really is no other explanation. For all his little body has already endured, his comfort is from the Lord and the Lord alone. Amen.

Another irregularity that may or may not be a cause for concern has kind of presented itself. When they were initially evaluating Malachi and trying to figure out everything that was wrong with him (before being diagnosed with CHARGE), they sent of a blood sample for chromosomal analysis or genetic testing. Basically, the blood sample is placed on a tray and allowed to grow until it reaches a certain phase of the division process. When it reaches that specific phase, the cells are stained. Then, the stained sample is closely examined to study the chromosome arrangement. Well, the lab was unable to get Malachi's cells to grow and get to that point of the process. If this happens once, the lab just requests a new sample and they redo the test. They have now been unsuccessful with the testing THREE times. I would have much more to write tonight, but I've been spending most of my night googling and searching to try and see if I come across anything that may cause this.

Also, please pray for John and I as we are gradually starting to just be more and more worn out. We are constantly torn between spending time with Emerson and being with Chi at the hospital. It seems like we are always on the go. I would like to think that it will get easier when we are able to bring Chi home, but that will just bring its own set of challenges for us to face. We trust that God is good and that He will be glorified through Malachi and our growing Sharbaugh family.

11/25/2009 update

Rough Day

Not much good news to share today. Last night Chi was consistently having arrhythmias through the night and John and I each were there when they occured at different times throughout the day. Last night he also had a bloody stool and because of that, they stopped his feeds. He missed two feeds (babies are NOT comfortable or happy when they are not being fed). They took some films of his abdomen and noticed some air on his colon, but nothing too abnormal or anything to be worried about. Thankfully they started his feeds again at 11:00 A.M. this morning. He seemed to tolerate it fine, but he did spit up after his 2:00 P.M. feed and then again during the feed where John was at the bedside. With the vomiting when John was there, Chi's oxygen levels decreased greatly (always really scary to see), but they were back to normal range when they suctioned out his ET-tube.

There were a few periods of time throughout the day though where he did seem to be completely at rest. One of our nurse practitioners commented to me that when Chi rests, he seems to truly be resting in the Lord. She's right. There really is no other explanation. For all his little body has already endured, his comfort is from the Lord and the Lord alone. Amen.

Another irregularity that may or may not be a cause for concern has kind of presented itself. When they were initially evaluating Malachi and trying to figure out everything that was wrong with him (before being diagnosed with CHARGE), they sent of a blood sample for chromosomal analysis or genetic testing. Basically, the blood sample is placed on a tray and allowed to grow until it reaches a certain phase of the division process. When it reaches that specific phase, the cells are stained. Then, the stained sample is closely examined to study the chromosome arrangement. Well, the lab was unable to get Malachi's cells to grow and get to that point of the process. If this happens once, the lab just requests a new sample and they redo the test. They have now been unsuccessful with the testing THREE times. I would have much more to write tonight, but I've been spending most of my night googling and searching to try and see if I come across anything that may cause this.

Also, please pray for John and I as we are gradually starting to just be more and more worn out. We are constantly torn between spending time with Emerson and being with Chi at the hospital. It seems like we are always on the go. I would like to think that it will get easier when we are able to bring Chi home, but that will just bring its own set of challenges for us to face. We trust that God is good and that He will be glorified through Malachi and our growing Sharbaugh family.

Real Moments (by John)

There have been times during this past month when I have felt distant from my Little Man's pains. I know he can't be very comfortable with being intubated and after having open heart surgery. But Marissa and I don't hear him crying because of pain or crying for Mommy or Daddy to pick him up. He is just unable to with that tube down his throat. And at times I feel bad because I think I am kind of thankful he does have that tube down his throat. I had the opportunity to hold him last night. After I got off of work I went straight to the Hospital (or Hop-sit-al as my beautiful daughter calls it). He seemed pretty peaceful laying there. Like I said before, I know he has to be uncomfortable but he doesn’t always show it. I sat down next to his bed-thing (I don't know what else to call it) and the nurse placed him in my arms. And for a moment I slipped back into that distant feeling. I mean look at him. He is just sleeping there. His heart rate is good. He isn't relying on the respirators at all because they are set to 18 breaths a minute and he was crankin out at 56 bpm. Then reality hit me like a ton of bricks. That poor little face tensed up and he gave the biggest pouty look. His monitor starts beeping because his heart rate dropped. Maybe he was in pain or maybe he was just uncomfortable. I don't know really, but as quickly as it dropped it went back up. The monitor printed his irregular heart beat and then he seemed fine. He proceeded to have this heart arrhythmia 5 or 6 more times while I was holding him. I just had to sit there and feel him squirm around a little bit when these were happening. This type of reality is sobering. As if knowing that I was thinking about how peaceful he looked either the Lord or Malachi decided to give me a glimpse of how fragile he still is. And to show me that I really have no way to fully comprehend the kind of strength God must be giving him. But it’s still difficult to watch him like that knowing I am powerless.

It’s been hard enough not being able to be the one who takes care of my child. I have to rely on someone else to make sure he is safe. That is tough for a father knowing that it is my job to take care of my family. I mean I work somewhere for a living. But that is just my work. My Job is to make sure my family is Loved, Provided for, and Safe. I am a steward. That is who I am as a husband and a father. And it is abundantly obvious everyday that I have no power over the situation. The Lord has shown me this from the beginning and it was somewhat of a relief. Knowing God is in control and I can't do anything so I need to put my trust in Him to take care of my Little Man. But over the past month it has begun to weigh on me. I know God is in control, but He appointed me as this little one's father. He gave me the responsibility to take care of him. And I can’t do anything. There have been moments when I have wondered if the good that will come from all this is worth the pain my son has endured and will continue to endure during his life.

Then I am reminded of Job. Not the part where he was blessed after he had suffered but what the Lord says to him in Job Chapter 38 - 41 when Job questioned God. Job was hurting deeply physically, emotionally, and spiritually but he would not curse his Lord. He did finally break down and questioned God's justice and fairness in the situation. And of course when God responds He explains the whole story of what had happened and how Job was being tested and that it was all because of that stinkin Satan accusing Job…… Oh wait no He didn't. He didn't need to explain Himself. God didn't need to respond to Job at all but He did. And even in that God was showing Job more grace than he deserved. What did God say to Job then? He reminded Job of how great He, the Creator and Sustainer of everything, truly is.

I have no idea what it was like for Job. What I am going through doesn't really compare, but that does not lessen the hurt I feel for my child or the confusion I feel in my heart when I see my son in pain. But in those moments when I, like Job, start to question God’s intentions my mind and heart go back to how Job responds in Chapter 42:

I know that You can do all things; no plan of yours can be thwarted. You asked, "Who is this that obscures my counsel without knowledge?" Surely I spoke of things I did not understand; things too wonderful for me to know. You said, "Listen now, and I will speak; I will question you, and you shall answer me." My ears had heard of you but now my eyes have seen you.

That is me. Job is saying what I need to say. It's not that I shouldn't ever wonder what the purpose of all this is or what God is doing. But all too often I think and speak of things I do not understand as if I deserve to know answers to questions I don’t need to ask.

For all the times I have read Job I don’t recall focusing on Jobs response to God. And even though my trials pale in comparison to Job’s, I feel (maybe even for the first time) I know what he means when he said, “My ears had heard of you but now my eyes have seen you.” I’ve heard of who God is and believed He is who He has said He is in Scripture. I’ve heard stories of how God has touch peoples lives and dealt miraculously. I have probably seen countless times how God has miraculously worked in my life and never took the time to notice Him working. But I can’t look at my son and not see my almighty Lord and Savior working every day in Malachi’s life, my family’s life, and my life.

Oh, how I pray that if the time were to ever come that I would have the opportunity to quote Job 1:21 that I would do so with an honest heart:

The LORD gave and the LORD has taken away; may the name of the LORD be praised.

Real Moments (by John)

There have been times during this past month when I have felt distant from my Little Man's pains. I know he can't be very comfortable with being intubated and after having open heart surgery. But Marissa and I don't hear him crying because of pain or crying for Mommy or Daddy to pick him up. He is just unable to with that tube down his throat. And at times I feel bad because I think I am kind of thankful he does have that tube down his throat. I had the opportunity to hold him last night. After I got off of work I went straight to the Hospital (or Hop-sit-al as my beautiful daughter calls it). He seemed pretty peaceful laying there. Like I said before, I know he has to be uncomfortable but he doesn’t always show it. I sat down next to his bed-thing (I don't know what else to call it) and the nurse placed him in my arms. And for a moment I slipped back into that distant feeling. I mean look at him. He is just sleeping there. His heart rate is good. He isn't relying on the respirators at all because they are set to 18 breaths a minute and he was crankin out at 56 bpm. Then reality hit me like a ton of bricks. That poor little face tensed up and he gave the biggest pouty look. His monitor starts beeping because his heart rate dropped. Maybe he was in pain or maybe he was just uncomfortable. I don't know really, but as quickly as it dropped it went back up. The monitor printed his irregular heart beat and then he seemed fine. He proceeded to have this heart arrhythmia 5 or 6 more times while I was holding him. I just had to sit there and feel him squirm around a little bit when these were happening. This type of reality is sobering. As if knowing that I was thinking about how peaceful he looked either the Lord or Malachi decided to give me a glimpse of how fragile he still is. And to show me that I really have no way to fully comprehend the kind of strength God must be giving him. But it’s still difficult to watch him like that knowing I am powerless.

It’s been hard enough not being able to be the one who takes care of my child. I have to rely on someone else to make sure he is safe. That is tough for a father knowing that it is my job to take care of my family. I mean I work somewhere for a living. But that is just my work. My Job is to make sure my family is Loved, Provided for, and Safe. I am a steward. That is who I am as a husband and a father. And it is abundantly obvious everyday that I have no power over the situation. The Lord has shown me this from the beginning and it was somewhat of a relief. Knowing God is in control and I can't do anything so I need to put my trust in Him to take care of my Little Man. But over the past month it has begun to weigh on me. I know God is in control, but He appointed me as this little one's father. He gave me the responsibility to take care of him. And I can’t do anything. There have been moments when I have wondered if the good that will come from all this is worth the pain my son has endured and will continue to endure during his life.

Then I am reminded of Job. Not the part where he was blessed after he had suffered but what the Lord says to him in Job Chapter 38 - 41 when Job questioned God. Job was hurting deeply physically, emotionally, and spiritually but he would not curse his Lord. He did finally break down and questioned God's justice and fairness in the situation. And of course when God responds He explains the whole story of what had happened and how Job was being tested and that it was all because of that stinkin Satan accusing Job…… Oh wait no He didn't. He didn't need to explain Himself. God didn't need to respond to Job at all but He did. And even in that God was showing Job more grace than he deserved. What did God say to Job then? He reminded Job of how great He, the Creator and Sustainer of everything, truly is.

I have no idea what it was like for Job. What I am going through doesn't really compare, but that does not lessen the hurt I feel for my child or the confusion I feel in my heart when I see my son in pain. But in those moments when I, like Job, start to question God’s intentions my mind and heart go back to how Job responds in Chapter 42:

I know that You can do all things; no plan of yours can be thwarted. You asked, "Who is this that obscures my counsel without knowledge?" Surely I spoke of things I did not understand; things too wonderful for me to know. You said, "Listen now, and I will speak; I will question you, and you shall answer me." My ears had heard of you but now my eyes have seen you.

That is me. Job is saying what I need to say. It's not that I shouldn't ever wonder what the purpose of all this is or what God is doing. But all too often I think and speak of things I do not understand as if I deserve to know answers to questions I don’t need to ask.

For all the times I have read Job I don’t recall focusing on Jobs response to God. And even though my trials pale in comparison to Job’s, I feel (maybe even for the first time) I know what he means when he said, “My ears had heard of you but now my eyes have seen you.” I’ve heard of who God is and believed He is who He has said He is in Scripture. I’ve heard stories of how God has touch peoples lives and dealt miraculously. I have probably seen countless times how God has miraculously worked in my life and never took the time to notice Him working. But I can’t look at my son and not see my almighty Lord and Savior working every day in Malachi’s life, my family’s life, and my life.

Oh, how I pray that if the time were to ever come that I would have the opportunity to quote Job 1:21 that I would do so with an honest heart:

The LORD gave and the LORD has taken away; may the name of the LORD be praised.

11/24/2009 update

Not much from me (Marissa) today... I got to hold Mr. Malachi for over an hour! Also, his choanal atresia repair is tentatively scheduled for Friday, December 4 sometime in the afternoon. Oh, and he got to wear clothes again. No more nakie!! Couple other things really quick: his central line has been pulled which means he only has one peripheral IV (just in case they need to administer something through an IV, but nothing is running through it at the moment). Lastly, his right eye is becoming a little bit less active when compared with his left. Not so sure just how much he can see, if anything, with that eye.

11/24/2009 update

Not much from me (Marissa) today... I got to hold Mr. Malachi for over an hour! Also, his choanal atresia repair is tentatively scheduled for Friday, December 4 sometime in the afternoon. Oh, and he got to wear clothes again. No more nakie!! Couple other things really quick: his central line has been pulled which means he only has one peripheral IV (just in case they need to administer something through an IV, but nothing is running through it at the moment). Lastly, his right eye is becoming a little bit less active when compared with his left. Not so sure just how much he can see, if anything, with that eye.

11/23/2009 Update

I think John will later document some things from his visit to the hospital today. On my end of things, the only thing I really have to update is that I think we've gotten the ball rolling on scheduling his hopefully last surgery (choanal atresia repair) during this hospitalization. If all is well, there is a good chance that he will be scheduled for surgery next week! We're pretty certain, however, that he will need to stay in the hospital until the stents are removed from his nasal passages and any feeding issues can be resolved. He is currently being fed through an OG tube which goes in his mouth and right to his stomach. He will probably need to be fed through an NG tube going from his nose or through a gastrostomy tube which would go directly through his stomach. It would definitely be a miracle if Chi would be able to eat normally when discharged from the hospital.

11/23/2009 Update

I think John will later document some things from his visit to the hospital today. On my end of things, the only thing I really have to update is that I think we've gotten the ball rolling on scheduling his hopefully last surgery (choanal atresia repair) during this hospitalization. If all is well, there is a good chance that he will be scheduled for surgery next week! We're pretty certain, however, that he will need to stay in the hospital until the stents are removed from his nasal passages and any feeding issues can be resolved. He is currently being fed through an OG tube which goes in his mouth and right to his stomach. He will probably need to be fed through an NG tube going from his nose or through a gastrostomy tube which would go directly through his stomach. It would definitely be a miracle if Chi would be able to eat normally when discharged from the hospital.

Blue Ribbons

This idea is not original with us. We are kind of stealing this from another family who have a child who was born with CHARGE. I've come to the point where it's probably about time that I remove the pink hospital bracelet we got 26 days ago when Chi was admitted into the NICU at Riley Children's Hospital. In its place, John and I have tied baby blue ribbons around our wrist as a reminder to think of Chi (like we really need a reminder) and to pray for him without ceasing. I am thinking we will plan to cut off the ribbons at Chi's one-year birthday--a HUGE milestone for our little man.

We would love for you all to be a part of this as well! If you would like to join us, simply find a light blue ribbon and PRAY, PRAY, PRAY! Also, we would appreciate it if you could email us a picture of you wearing your ribbon (include faces if possible!) so that we can be sure to have a keepsake of all thsoe standing in prayer alongside us. You can email these to marissasharbaugh@gmail.com and put blue ribbon in the subject line. (Because it is a public blog, we include names with the pictures)

Blue Ribbons

This idea is not original with us. We are kind of stealing this from another family who have a child who was born with CHARGE. I've come to the point where it's probably about time that I remove the pink hospital bracelet we got 26 days ago when Chi was admitted into the NICU at Riley Children's Hospital. In its place, John and I have tied baby blue ribbons around our wrist as a reminder to think of Chi (like we really need a reminder) and to pray for him without ceasing. I am thinking we will plan to cut off the ribbons at Chi's one-year birthday--a HUGE milestone for our little man.

We would love for you all to be a part of this as well! If you would like to join us, simply find a light blue ribbon and PRAY, PRAY, PRAY! Also, we would appreciate it if you could email us a picture of you wearing your ribbon (include faces if possible!) so that we can be sure to have a keepsake of all thsoe standing in prayer alongside us. You can email these to marissasharbaugh@gmail.com and put blue ribbon in the subject line. (Because it is a public blog, we include names with the pictures)

11/22/2009 A good surprise

A Good Surprise

I got to hold my baby!! We knew that the time was probably drawing close where we would be able to hold Malachi again. However, we weren't wanting to get our hopes up that it would be anytime soon. I was completely shocked when the nurse today asked if we wanted to hold the baby. Um... YES!!! I had been LONGING to hold my baby since the few minutes I was allowed before surgery two Thursdays ago. I sat in bliss for just over an hour as I was able to cradle my baby in my arms as he snuggled right in and took a nap. The entire time his heart rate remained low and steady, his blood pressure was great, and there was no wincing or grimacing of pain. Honestly, I don't know who benefited more from the contact--me or Baby Chi. I think this should mean more baby snuggle time. I am planning on getting to the hospital early tomorrow morning so that I can be there for when the NICU team does their rounds. Hopefully tomorrow we will have a bit more of an idea regarding time frames of upcoming surgery and recovery and other things that need to take place so that we might get even a vague idea of when we may be able to take Mr. Malachi HOME!

(disregard the weird look on my face)

For more information regarding CHARGE, visit http://chargesyndrome.org/about-charge.asp.
I have been working my way through a 250+ page manual for parents that this organization has put together. I am already finding it to be an invaluable resource for learning about CHARGE and the different areas where I will need to be an advocate for Baby Chi and his ongoing professional care and medical needs. On one hand, the saying "knowledge is power" is proving true. I am educating myself in many aspects of CHARGE that the medical staff hasn't necessarily brought up yet. With this information I feel more confident in the questions that need to be asked and getting an idea of what I should expect from the doctors overseeing Chi's care. On the other hand, the more I learn about all of the factors of CHARGE and the severity of all Chi's problems, the more I realize that I will only be able to be the advocate, mother, and nurse that Chi needs through strength which can only be provided by the Holy Spirit.

All of the battles and major structural defects that Chi is currently fighting are very much life-threatening. Each surgery is major and each brings the risk of infection and further complications. One sobering paragraph I read within the CHARGE literature included this statement: "Children with CHARGE and TEF/EA (transesophageal fistula/esophageal atresia--Chi had both) hav ehigher mortality than other children with CHARGE. This is especially true when combined with choanal atresia and/or a heart defect." WOW. Many times CHARGE is not immediately diagnosed and many defects and things can go unnoticed. We are EXTREMELY thankful that Chi's structural defects were identified early and are being taken care of one by one. Thankfully, we know that God is in control of all things and is personally sustaining life--Chi's life.

I am certain that we will struggle with his communication as he will most likely have impaired vision AND hearing. I will write more in-depth regarding deafblindness in a later post. All I know is that we will need to be creative and flexible when it comes to building some sort of communication with our son. It is very important to me now to be able to hold and touch him as much as I can now so that we can start to begin that physcial bonding most parents have from the beginning with their children.

11/22/2009 A good surprise

A Good Surprise

I got to hold my baby!! We knew that the time was probably drawing close where we would be able to hold Malachi again. However, we weren't wanting to get our hopes up that it would be anytime soon. I was completely shocked when the nurse today asked if we wanted to hold the baby. Um... YES!!! I had been LONGING to hold my baby since the few minutes I was allowed before surgery two Thursdays ago. I sat in bliss for just over an hour as I was able to cradle my baby in my arms as he snuggled right in and took a nap. The entire time his heart rate remained low and steady, his blood pressure was great, and there was no wincing or grimacing of pain. Honestly, I don't know who benefited more from the contact--me or Baby Chi. I think this should mean more baby snuggle time. I am planning on getting to the hospital early tomorrow morning so that I can be there for when the NICU team does their rounds. Hopefully tomorrow we will have a bit more of an idea regarding time frames of upcoming surgery and recovery and other things that need to take place so that we might get even a vague idea of when we may be able to take Mr. Malachi HOME!

(disregard the weird look on my face)

For more information regarding CHARGE, visit http://chargesyndrome.org/about-charge.asp.
I have been working my way through a 250+ page manual for parents that this organization has put together. I am already finding it to be an invaluable resource for learning about CHARGE and the different areas where I will need to be an advocate for Baby Chi and his ongoing professional care and medical needs. On one hand, the saying "knowledge is power" is proving true. I am educating myself in many aspects of CHARGE that the medical staff hasn't necessarily brought up yet. With this information I feel more confident in the questions that need to be asked and getting an idea of what I should expect from the doctors overseeing Chi's care. On the other hand, the more I learn about all of the factors of CHARGE and the severity of all Chi's problems, the more I realize that I will only be able to be the advocate, mother, and nurse that Chi needs through strength which can only be provided by the Holy Spirit.

All of the battles and major structural defects that Chi is currently fighting are very much life-threatening. Each surgery is major and each brings the risk of infection and further complications. One sobering paragraph I read within the CHARGE literature included this statement: "Children with CHARGE and TEF/EA (transesophageal fistula/esophageal atresia--Chi had both) hav ehigher mortality than other children with CHARGE. This is especially true when combined with choanal atresia and/or a heart defect." WOW. Many times CHARGE is not immediately diagnosed and many defects and things can go unnoticed. We are EXTREMELY thankful that Chi's structural defects were identified early and are being taken care of one by one. Thankfully, we know that God is in control of all things and is personally sustaining life--Chi's life.

I am certain that we will struggle with his communication as he will most likely have impaired vision AND hearing. I will write more in-depth regarding deafblindness in a later post. All I know is that we will need to be creative and flexible when it comes to building some sort of communication with our son. It is very important to me now to be able to hold and touch him as much as I can now so that we can start to begin that physcial bonding most parents have from the beginning with their children.