we've made it another day.

The days are quickly seeming to become one massive blur. I am trying to take notes throughout the day so that I can sit down and reflect on what actually has taken place. God is continually proving His faithfulness to those who commit their lives to Him.

Today's update: John and I were able to be at Chi's bedside while the doctors made their rounds this morning. Chi is holding steady from a cardiology standpoint. There are two more surgeries that need to take place in the near future. We have the Norwood operation as well as the choanal atresia repair (both of his nasal passages are blocked or were never open in the first place). The choanal atresia repair is necessary and important because babies are mostly nose breathers and right now Chi is unable to do that. They will keep his OG tube in until he can successfully breathe through his nose.

So there will have to be discussion between the docs and surgeons as to which procedure needs to take place first and they will get back to us with their expert opinion. They cannot take place at the same time because the nose repair is a "dirty" surgery and there is a risk of infection, whereas the cardiac surgery is to be completely sterile. However, the cardiac surgeon wants to have that operation take place before Chi turns three weeks old. Also, the central line that was placed during Friday's surgery has the risk of clotting, so they may need to start him on some anticoagulation therapy.

There were a couple of scares throughout the day though. Thankfully, we were not in the room when the more serious episode took place. Apparently, he had a bout of apnea and he needed to be resuscitated with the bag. The NICU doctor was called to evaluate and he ordered a chest x-ray as he thought that there might be a slight collapse in his right lung. The image appeared to be a little off, but mostly fine. In order to combat this a little bit (hoping it's just a little drainage) they have him laying more propped up on his left side. He is definitely feeling pain and they continue to give him doses of morphine throughout the day. I can't tell you how hard it is to not be able to help your little boy, still less than one week old.

On a brighter note, John and I were able to help out with a bath and taking Chi's temp with the thermometer this afternoon. I am still hesitant to touch Chi too much as they want to be careful that he is not overstimulated due to his situation. Also, this afternoon we were able to spend some time with Emerson. It is VERY hard not to feel guilty about leaving her behind while we spend so much time at the hospital. It is also very hard for us to leave the hospital because things can change with Chi's condition in a moment's notice and we want to be readily available to meet with the medical staff here at Riley. I am hoping that this gets easier with time. We were able to call her around 8:00 and say our goodnights.

We are still praying that we will be able to stay in the Ronald McDonald House here in Indianapolis while Baby Chi is fighting so hard in the hospital. Most likely, we will be here through Christmas and it is going to be a long, drawn out, tiresome ordeal. They do ask for a $10 per night to help with the costs of the room for those who stay the night here. Thankfully, they only require you to pay what you can at this time, or ask that when you eventually can make a payment, that you donate to the Ronald McDonald House. John and I are praying that one day we will be able to bless them financially in a parallel way to the blessing they have been to us during these trying times.

So I can go nine complete months of pregnancy and have absolutely NO PROBLEM with swelling whatsoever. Apparently, I had been up and walking around way too much Malachi's first full day here at the hospital. I thought I was getting shin splints due to the pressure in my lower legs. I didn't realize until I changed into some shorts that night that my ankles were now the size of an elephants! They are starting to get better now that I am aware of the problem and can be off my feet some more.

Here's a quick pic of me giving Chi a "bath". It's still critical that we don't overstimulate his little body at this point, so I was pretty hesitant with this.

A picture of daddy with baby. He's been trying out new nicknames for Chi to see what sticks. "Little hero" has become one of his regulars.

When John was leaning over Chi's bed like this we got a nice little surprise... He opened his left eye. Up to this point, he had only slightly opened his right eye. Good work, little man!

we've made it another day.

The days are quickly seeming to become one massive blur. I am trying to take notes throughout the day so that I can sit down and reflect on what actually has taken place. God is continually proving His faithfulness to those who commit their lives to Him.

Today's update: John and I were able to be at Chi's bedside while the doctors made their rounds this morning. Chi is holding steady from a cardiology standpoint. There are two more surgeries that need to take place in the near future. We have the Norwood operation as well as the choanal atresia repair (both of his nasal passages are blocked or were never open in the first place). The choanal atresia repair is necessary and important because babies are mostly nose breathers and right now Chi is unable to do that. They will keep his OG tube in until he can successfully breathe through his nose.

So there will have to be discussion between the docs and surgeons as to which procedure needs to take place first and they will get back to us with their expert opinion. They cannot take place at the same time because the nose repair is a "dirty" surgery and there is a risk of infection, whereas the cardiac surgery is to be completely sterile. However, the cardiac surgeon wants to have that operation take place before Chi turns three weeks old. Also, the central line that was placed during Friday's surgery has the risk of clotting, so they may need to start him on some anticoagulation therapy.

There were a couple of scares throughout the day though. Thankfully, we were not in the room when the more serious episode took place. Apparently, he had a bout of apnea and he needed to be resuscitated with the bag. The NICU doctor was called to evaluate and he ordered a chest x-ray as he thought that there might be a slight collapse in his right lung. The image appeared to be a little off, but mostly fine. In order to combat this a little bit (hoping it's just a little drainage) they have him laying more propped up on his left side. He is definitely feeling pain and they continue to give him doses of morphine throughout the day. I can't tell you how hard it is to not be able to help your little boy, still less than one week old.

On a brighter note, John and I were able to help out with a bath and taking Chi's temp with the thermometer this afternoon. I am still hesitant to touch Chi too much as they want to be careful that he is not overstimulated due to his situation. Also, this afternoon we were able to spend some time with Emerson. It is VERY hard not to feel guilty about leaving her behind while we spend so much time at the hospital. It is also very hard for us to leave the hospital because things can change with Chi's condition in a moment's notice and we want to be readily available to meet with the medical staff here at Riley. I am hoping that this gets easier with time. We were able to call her around 8:00 and say our goodnights.

We are still praying that we will be able to stay in the Ronald McDonald House here in Indianapolis while Baby Chi is fighting so hard in the hospital. Most likely, we will be here through Christmas and it is going to be a long, drawn out, tiresome ordeal. They do ask for a $10 per night to help with the costs of the room for those who stay the night here. Thankfully, they only require you to pay what you can at this time, or ask that when you eventually can make a payment, that you donate to the Ronald McDonald House. John and I are praying that one day we will be able to bless them financially in a parallel way to the blessing they have been to us during these trying times.

So I can go nine complete months of pregnancy and have absolutely NO PROBLEM with swelling whatsoever. Apparently, I had been up and walking around way too much Malachi's first full day here at the hospital. I thought I was getting shin splints due to the pressure in my lower legs. I didn't realize until I changed into some shorts that night that my ankles were now the size of an elephants! They are starting to get better now that I am aware of the problem and can be off my feet some more.

Here's a quick pic of me giving Chi a "bath". It's still critical that we don't overstimulate his little body at this point, so I was pretty hesitant with this.

A picture of daddy with baby. He's been trying out new nicknames for Chi to see what sticks. "Little hero" has become one of his regulars.

When John was leaning over Chi's bed like this we got a nice little surprise... He opened his left eye. Up to this point, he had only slightly opened his right eye. Good work, little man!

one day at a time

Super quick update... hopefully i will have some downtime tomorrow to gather more detailed stuff, but here's the skeleton rundown of the day.

Chi's surgery was scheduled to be started at 7:30. John and I wanted to be sure that we were up there in time so we literally had like FIVE alarms set to wake us up at the appropriate time! We go up to his bed early to see him before they took him away. As soon as we got up there the overnight nurse asked if we wanted to hold Malachi before the surgery... umm... YES!!!! so John and I each got a chance to hold our little man before they took him downstairs. Pastor Mark was able to come see Chi and pray with us before they took him down and we were all allowed to follow as they pushed the cart to the appropriate floor. on the way down there was a bit of a scare as the ventilator wasn't working properly and they had to manually hand pump air for Chi to continue breathing until they got him moved to another bed. after meeting the nursing staff and anesthesiologist we were able to reach through and give Chi a little love squeeze to let him know we were there and that we loved him and that SO MANY PEOPLE were praying for him.

then we waited. we were able to kind of digest and process what has already taken place as we talked with pastor mark and brian and filled them in on the situation and what God has already been doing and how He has been working through this situation. it was nice that the people at the desk kind of turned a blind eye and let john's mom sit with us for a little while too. we are currently restricted right now as far as visitors go with the rule being only TWO PERTINENT visitors per patient. that means john and i would be the pertinent visitors and that's all. they do, however, allow pastors and people of that nature to stop by though. we received updates every hour from an operating room nurse who made rounds in the waiting room which was great. by 12:30 they were finished with the different operations and Chi was in stable condition in recovery. they were able to repair the TE fistula as well as put in a central line to allow better access for the doctors and nurses to administer medication and that sort of thing. The ENT doc, however, was unable to scope the nasal passages as planned. One more thing has since been added to Chi's ever-growing list of problems. He has ductal atresia, meaning both of his nasal ducts are closed off. either they are not open or they are very slightly open, but not enough to get any air through. it is something that will need to be operated on and taken care of before he can be dismissed, meaning probably two more weeks of Riley added to his stay.

after all that we were able to sneak home for a bit to see emma and try to relax with my feet up. If you saw my ankles, you too would agree that i NEED more time with my feet up to stop some of this swelling. unfortunately while we were home we received a call from one of the doctors on the NICU team and we needed to come in so he could talk with us. we quickly packed up a few things and rushed back to the hospital. so much for a relaxing afternoon at home. he kind of went through the list of symptoms and things that we were already aware of. he didn't really touch on anything new, but just wanted to let us know that they are going to do a chromosome test and once that is done they may be able to narrow down what is going on with our baby. they do think that chi has something wrong on a genetic/chromosomal level, so hopefully we can get some definitive answers from these tests.

the rest of the night we have been able to spend time with Chi and ask questions we had to the nurses and other staff. we also spent some time just getting to know our nurse and the nurse of the baby right next to chi. it has thus far been a very tiring, very interesting journey and we know it has only just begun and that there is MUCH MUCH MUCH more for us to learn along the way. i cannot even count the number of blessings we have already received, even just in the matter of the past 24 hours. i wish i had the time and energy to write them all down so that we can look back on God's greatness even in the small things throughout the course of these days. i wish i would have written more throughout the day so that i could better remember what all took place, but it has been a blur that is for sure.

one huge blessing is that we've been able to stay another night at the Ronald McDonald house. we didn't get our names in until later in the day, but the nurse really pushed the fact that we were a high-priority case and that the baby is 3 days old and would be recovering from surgery. Bless their hearts, they've had compassion on us Sharbaughs and allowed us to stay for the night.

Please continue to pray for Chi's recovery from surgery, my physical healing from the delivery/postpartum stuff, and really that we can get a room at the long-term ronald mcdonald facilty here in town. it would be such a huge blessing to know where we are going to stay each night.

We obviously have many, many things going through our minds at this point and still have many uncertainties surrounding baby chi. thank you so much for the care and support that you have provided to us through this difficult time. john has said on multiple occasions that our human strength had completely run out as soon as they took Malachi to the NICU within minutes after delivery. Since then we have been running on God-give strength and endurance fueled by your prayers. Please, please keep them coming! So maybe this update wasn't as super quick as I had planned. Have a good night.

one day at a time

Super quick update... hopefully i will have some downtime tomorrow to gather more detailed stuff, but here's the skeleton rundown of the day.

Chi's surgery was scheduled to be started at 7:30. John and I wanted to be sure that we were up there in time so we literally had like FIVE alarms set to wake us up at the appropriate time! We go up to his bed early to see him before they took him away. As soon as we got up there the overnight nurse asked if we wanted to hold Malachi before the surgery... umm... YES!!!! so John and I each got a chance to hold our little man before they took him downstairs. Pastor Mark was able to come see Chi and pray with us before they took him down and we were all allowed to follow as they pushed the cart to the appropriate floor. on the way down there was a bit of a scare as the ventilator wasn't working properly and they had to manually hand pump air for Chi to continue breathing until they got him moved to another bed. after meeting the nursing staff and anesthesiologist we were able to reach through and give Chi a little love squeeze to let him know we were there and that we loved him and that SO MANY PEOPLE were praying for him.

then we waited. we were able to kind of digest and process what has already taken place as we talked with pastor mark and brian and filled them in on the situation and what God has already been doing and how He has been working through this situation. it was nice that the people at the desk kind of turned a blind eye and let john's mom sit with us for a little while too. we are currently restricted right now as far as visitors go with the rule being only TWO PERTINENT visitors per patient. that means john and i would be the pertinent visitors and that's all. they do, however, allow pastors and people of that nature to stop by though. we received updates every hour from an operating room nurse who made rounds in the waiting room which was great. by 12:30 they were finished with the different operations and Chi was in stable condition in recovery. they were able to repair the TE fistula as well as put in a central line to allow better access for the doctors and nurses to administer medication and that sort of thing. The ENT doc, however, was unable to scope the nasal passages as planned. One more thing has since been added to Chi's ever-growing list of problems. He has ductal atresia, meaning both of his nasal ducts are closed off. either they are not open or they are very slightly open, but not enough to get any air through. it is something that will need to be operated on and taken care of before he can be dismissed, meaning probably two more weeks of Riley added to his stay.

after all that we were able to sneak home for a bit to see emma and try to relax with my feet up. If you saw my ankles, you too would agree that i NEED more time with my feet up to stop some of this swelling. unfortunately while we were home we received a call from one of the doctors on the NICU team and we needed to come in so he could talk with us. we quickly packed up a few things and rushed back to the hospital. so much for a relaxing afternoon at home. he kind of went through the list of symptoms and things that we were already aware of. he didn't really touch on anything new, but just wanted to let us know that they are going to do a chromosome test and once that is done they may be able to narrow down what is going on with our baby. they do think that chi has something wrong on a genetic/chromosomal level, so hopefully we can get some definitive answers from these tests.

the rest of the night we have been able to spend time with Chi and ask questions we had to the nurses and other staff. we also spent some time just getting to know our nurse and the nurse of the baby right next to chi. it has thus far been a very tiring, very interesting journey and we know it has only just begun and that there is MUCH MUCH MUCH more for us to learn along the way. i cannot even count the number of blessings we have already received, even just in the matter of the past 24 hours. i wish i had the time and energy to write them all down so that we can look back on God's greatness even in the small things throughout the course of these days. i wish i would have written more throughout the day so that i could better remember what all took place, but it has been a blur that is for sure.

one huge blessing is that we've been able to stay another night at the Ronald McDonald house. we didn't get our names in until later in the day, but the nurse really pushed the fact that we were a high-priority case and that the baby is 3 days old and would be recovering from surgery. Bless their hearts, they've had compassion on us Sharbaughs and allowed us to stay for the night.

Please continue to pray for Chi's recovery from surgery, my physical healing from the delivery/postpartum stuff, and really that we can get a room at the long-term ronald mcdonald facilty here in town. it would be such a huge blessing to know where we are going to stay each night.

We obviously have many, many things going through our minds at this point and still have many uncertainties surrounding baby chi. thank you so much for the care and support that you have provided to us through this difficult time. john has said on multiple occasions that our human strength had completely run out as soon as they took Malachi to the NICU within minutes after delivery. Since then we have been running on God-give strength and endurance fueled by your prayers. Please, please keep them coming! So maybe this update wasn't as super quick as I had planned. Have a good night.

one long day down, many MANY many more long days to go.

It's been a long, long, long, long, loooonnnngggg day. (and just to warn you, this post may be just as long!) most of our day was spent in and out of the NICU at Chi's bedside talking with doctors-lots of doctors! We were able to meet with the pediatric surgeon who will be operating on him tomorrow morning, a geneticist, the neonatologist and his staff, as well as the cardiology team. thankfully, we were actually able to sit down and meet with each group individually and go through what problems are known and begin mapping out a plan of action. What we knew before the transport to Riley was that Chi had a heart defect which would need an operation. While viewing these imaging studies, a few other problems were discovered.

When we arrived at the NICU this morning, we were met by the pediatric surgeon who will be taking care of the TE fistula. basically, his upper esophagus just stops (esophageal atresia). The lower esophagus, however, which is connected to his stomach has branched off and has now connected directly to his trachea. His surgery will consist of putting those three parts back in the right order so that he can bring in air and food properly through his mouth. This surgery will begin tomorrow morning (10/30/09) at 7:30-at least that is when they will begin prepping him. It should take about 2.5 to 3 hours to complete the fistula repair and also place a PICC line so the medical staff has a secure access point into the body as well as scope of the nasal passages to look for obstruction. They attempted to place an NG tube, but where unable to do so. They obviously need to discover the reasoning behind this.

After the surgery, there is the matter of recovery. If all goes as planned, hopefully this will only require seven to ten days. When he has met the appropriate recovery standards, he will then undergo his first heart surgery. This needs to take place because his aorta did not fully develop and does not work correctly (aortic atresia). There is no opening between the artery and where it is supposed to connect in the ventricle. Also, there is an atrial septal defect. Normally, this is a problem, but in Chi's case it has allowed the left ventricle to recieve blood and develop normally, so he has four working chambers of his heart as opposed to just three. The procedure is called a Stage I Norwood operation-turn pulmonary artery into aortic artery and place a shunt so that blood will still be pumped to the lungs. (http://www.childrensheartinstitute.org/educate/defects/hypo2.htm has a great, easy to understand explanation). This, again, is a temporary fix to keep him alive. In 6 to 12 months if things go well he will need further surgeries to accomodate his growth and anatomical needs.

It truly is a blessing that God allowed him to have breathing problems right after delivery. If he hadn't, Chi's heart murmur very well may have been dismissed because a murmur is EXTREMELY common and seen in most newborns. Instead, it was added to the list of things to investigate. An echocardiogram was ordered and they immediately found the heart defect. Within an hour from our first meeting with the neonatologist at St. Francis, he was back up in our room explaining to us the severity of the situation and that Chi needed to be immediately transferred to Riley Childrens Hospital where we are now. With each operation and each test, they may continue to find more problems/defects as they open him up and get a better look at Chi's anatomy.

It is also a miracle that they found the heart defect when they did. Babies have what is called a patent ductus arteriosus (PDA-i believe this helps them to provide proper blood flow through the body while in utero). This vessel will close after the first couple days of baby's life. It is absolutely vital for Malachi that this stays open as it is working overtime to keep oxygen flowing to our little man's body. Chi will continually be taking prostaglandins (PGs) which will refrain this artery from closing.

Due to other physical anomalies they have seen, they are looking into genetic/chromosomal problems. By themselves, most of these things are not indicative of any specific disease. But because he has these multiple developmental problems, they are hoping to find a way to bring the big picture together with an overlying cause. If they can pin it down to a specific syndrome, they will have a better understanding of what is going on. Eventually, they may take blood samples from John and I as well to see if there are any irregularities.

We have been blessed to stay in Ronald McDonald house overnight tonight. We are especially grateful because we plan to be at Malachi's bedside by 7:00 AM tomorrow. This is a night-by-night stay and we will have to check out by 10:00. Each day we can have our nurse request that we be added to the list and then sometime between 4 and 5 they call and let you know if there is a room for you that evening. We also learned that even if we aren't sleeping in one of the rooms, we can stil utilize the lounge and kitchen area that is provided through donations and things by the public. This allowed for us to see our parents as well as spend some time with Emerson this evening. Ultimately, we would like to be able to stay in the long-term Ronald McDonald facilty which isn't IN the hospital, but it is within walking distance. Our nurse has also put us on the waiting list for that facility.

At this time, we are very much torn between leaving Emerson at home while needing to be readily available at the NICU to take care of Malachi. I know Grandma has her hands full with our crazy, energetic 22-month-old.

Most importantly, we do know that God is in control and that He has a plan. The same God that knows what is best for "John and Marissa" and wants to do what is best for "John and Marissa" is the same God that wants to do what is best for Malachi. We tend to look and see what God is going to do through this for "John and Marissa", but we are really excited to see "What is Malachi going to be able to do for God and His glory?"

Someone could look at this situation and say, "How could God do this?" or "How could God allow this to happen to this little baby?" We would respond with the fact that we live in a sin-cursed world that would allow this to happen to our baby. We believe that God will use Malachi to bring glory to His name. God was the one who kept him alive in the womb for nine months with these problems. God was the one who allowed his PDA to stay open long enough for the doctors to diagnose the problem. God was the one who allowed breathing problems so he would be sent to the NICU within five minutes of his delivery. We say PRAISE GOD for protecting our baby thus far and PRAISE GOD for keeping him alive and PRAISE GOD for giving us, especially me, the strength to handle everything right now.

If Malachi has some ongoing issues, we do not look at it in that we are going to have immense struggles. We know that GOd has placed this blessing into our lives and that we have been called to be stewards of this special child and He is giving us the opportunity to take care of and raise and help young Malachi to glorify the Lord. It's not a matter of IF things are going to be hard at certain points; they will be. God has chosen us to be stewards and we want to glorfiy Him in how we handle things and how we take care of our amazing little man.

Some would say why us? We, too, ask "Why us?" but not in the way that you might be expecting. "Why have we been chosen and blessed with this opportunity?" To that, we can only praise Him and do our best through Christ's power to raise and care for Mr. Malachi. To God alone be the glory.

John is planning on memorizing 2 Corinthians 4 (sorry, Brian, he's still working on it!). We appreciate this passage and we want all of you to know the following: "Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal" (2 Cor 4:16-18)

Specific prayer requests:
*Malachi would recover from his surgery and all would go according to plan.
*Being able to witness to people (doctors, surgeons, nurses, other parents with children in NICU, others in Ronald McDonald house with children admitted to the hospital) and to show the love of Christ during this time of suffering..

*Marissa's continued recovery. (I will write more about this as I am able tomorrow).


We do very much appreciate all of the support we have received and will continue to receive. We are thankful for family, church family in indiana, church family in iowa, churches connected to Norm's ministry, church connected to sibling ministries and extending family, even people we have never met! Even though it seems like there is nothing tangible that we can do for our little one, we do have one thing--we, as believers, have the amazing gift of prayer. Prayer is powerful. Scripture says "The effective, fervent prayer of a righteous man avails much" (James 5:16) For some reason, which we cannot begin to fathom, God has given us the opportunity to approach Him and kneel before His throne. What a gift we have in a personal God who is vitally active and interested in EVERY detail of our lives (Psalm 37:23).

I will update with pictures on my actual blog tomorrow.

one long day down, many MANY many more long days to go.

It's been a long, long, long, long, loooonnnngggg day. (and just to warn you, this post may be just as long!) most of our day was spent in and out of the NICU at Chi's bedside talking with doctors-lots of doctors! We were able to meet with the pediatric surgeon who will be operating on him tomorrow morning, a geneticist, the neonatologist and his staff, as well as the cardiology team. thankfully, we were actually able to sit down and meet with each group individually and go through what problems are known and begin mapping out a plan of action. What we knew before the transport to Riley was that Chi had a heart defect which would need an operation. While viewing these imaging studies, a few other problems were discovered.

When we arrived at the NICU this morning, we were met by the pediatric surgeon who will be taking care of the TE fistula. basically, his upper esophagus just stops (esophageal atresia). The lower esophagus, however, which is connected to his stomach has branched off and has now connected directly to his trachea. His surgery will consist of putting those three parts back in the right order so that he can bring in air and food properly through his mouth. This surgery will begin tomorrow morning (10/30/09) at 7:30-at least that is when they will begin prepping him. It should take about 2.5 to 3 hours to complete the fistula repair and also place a PICC line so the medical staff has a secure access point into the body as well as scope of the nasal passages to look for obstruction. They attempted to place an NG tube, but where unable to do so. They obviously need to discover the reasoning behind this.

After the surgery, there is the matter of recovery. If all goes as planned, hopefully this will only require seven to ten days. When he has met the appropriate recovery standards, he will then undergo his first heart surgery. This needs to take place because his aorta did not fully develop and does not work correctly (aortic atresia). There is no opening between the artery and where it is supposed to connect in the ventricle. Also, there is an atrial septal defect. Normally, this is a problem, but in Chi's case it has allowed the left ventricle to recieve blood and develop normally, so he has four working chambers of his heart as opposed to just three. The procedure is called a Stage I Norwood operation-turn pulmonary artery into aortic artery and place a shunt so that blood will still be pumped to the lungs. (http://www.childrensheartinstitute.org/educate/defects/hypo2.htm has a great, easy to understand explanation). This, again, is a temporary fix to keep him alive. In 6 to 12 months if things go well he will need further surgeries to accomodate his growth and anatomical needs.

It truly is a blessing that God allowed him to have breathing problems right after delivery. If he hadn't, Chi's heart murmur very well may have been dismissed because a murmur is EXTREMELY common and seen in most newborns. Instead, it was added to the list of things to investigate. An echocardiogram was ordered and they immediately found the heart defect. Within an hour from our first meeting with the neonatologist at St. Francis, he was back up in our room explaining to us the severity of the situation and that Chi needed to be immediately transferred to Riley Childrens Hospital where we are now. With each operation and each test, they may continue to find more problems/defects as they open him up and get a better look at Chi's anatomy.

It is also a miracle that they found the heart defect when they did. Babies have what is called a patent ductus arteriosus (PDA-i believe this helps them to provide proper blood flow through the body while in utero). This vessel will close after the first couple days of baby's life. It is absolutely vital for Malachi that this stays open as it is working overtime to keep oxygen flowing to our little man's body. Chi will continually be taking prostaglandins (PGs) which will refrain this artery from closing.

Due to other physical anomalies they have seen, they are looking into genetic/chromosomal problems. By themselves, most of these things are not indicative of any specific disease. But because he has these multiple developmental problems, they are hoping to find a way to bring the big picture together with an overlying cause. If they can pin it down to a specific syndrome, they will have a better understanding of what is going on. Eventually, they may take blood samples from John and I as well to see if there are any irregularities.

We have been blessed to stay in Ronald McDonald house overnight tonight. We are especially grateful because we plan to be at Malachi's bedside by 7:00 AM tomorrow. This is a night-by-night stay and we will have to check out by 10:00. Each day we can have our nurse request that we be added to the list and then sometime between 4 and 5 they call and let you know if there is a room for you that evening. We also learned that even if we aren't sleeping in one of the rooms, we can stil utilize the lounge and kitchen area that is provided through donations and things by the public. This allowed for us to see our parents as well as spend some time with Emerson this evening. Ultimately, we would like to be able to stay in the long-term Ronald McDonald facilty which isn't IN the hospital, but it is within walking distance. Our nurse has also put us on the waiting list for that facility.

At this time, we are very much torn between leaving Emerson at home while needing to be readily available at the NICU to take care of Malachi. I know Grandma has her hands full with our crazy, energetic 22-month-old.

Most importantly, we do know that God is in control and that He has a plan. The same God that knows what is best for "John and Marissa" and wants to do what is best for "John and Marissa" is the same God that wants to do what is best for Malachi. We tend to look and see what God is going to do through this for "John and Marissa", but we are really excited to see "What is Malachi going to be able to do for God and His glory?"

Someone could look at this situation and say, "How could God do this?" or "How could God allow this to happen to this little baby?" We would respond with the fact that we live in a sin-cursed world that would allow this to happen to our baby. We believe that God will use Malachi to bring glory to His name. God was the one who kept him alive in the womb for nine months with these problems. God was the one who allowed his PDA to stay open long enough for the doctors to diagnose the problem. God was the one who allowed breathing problems so he would be sent to the NICU within five minutes of his delivery. We say PRAISE GOD for protecting our baby thus far and PRAISE GOD for keeping him alive and PRAISE GOD for giving us, especially me, the strength to handle everything right now.

If Malachi has some ongoing issues, we do not look at it in that we are going to have immense struggles. We know that GOd has placed this blessing into our lives and that we have been called to be stewards of this special child and He is giving us the opportunity to take care of and raise and help young Malachi to glorify the Lord. It's not a matter of IF things are going to be hard at certain points; they will be. God has chosen us to be stewards and we want to glorfiy Him in how we handle things and how we take care of our amazing little man.

Some would say why us? We, too, ask "Why us?" but not in the way that you might be expecting. "Why have we been chosen and blessed with this opportunity?" To that, we can only praise Him and do our best through Christ's power to raise and care for Mr. Malachi. To God alone be the glory.

John is planning on memorizing 2 Corinthians 4 (sorry, Brian, he's still working on it!). We appreciate this passage and we want all of you to know the following: "Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal" (2 Cor 4:16-18)

Specific prayer requests:
*Malachi would recover from his surgery and all would go according to plan.
*Being able to witness to people (doctors, surgeons, nurses, other parents with children in NICU, others in Ronald McDonald house with children admitted to the hospital) and to show the love of Christ during this time of suffering..

*Marissa's continued recovery. (I will write more about this as I am able tomorrow).


We do very much appreciate all of the support we have received and will continue to receive. We are thankful for family, church family in indiana, church family in iowa, churches connected to Norm's ministry, church connected to sibling ministries and extending family, even people we have never met! Even though it seems like there is nothing tangible that we can do for our little one, we do have one thing--we, as believers, have the amazing gift of prayer. Prayer is powerful. Scripture says "The effective, fervent prayer of a righteous man avails much" (James 5:16) For some reason, which we cannot begin to fathom, God has given us the opportunity to approach Him and kneel before His throne. What a gift we have in a personal God who is vitally active and interested in EVERY detail of our lives (Psalm 37:23).

I will update with pictures on my actual blog tomorrow.

Baby Chi has arrived

I will post more later, but here's some pics for the time being. He arrived at 7:28 pm weighing in at 7 lb 8.9 oz and measuring 21 inches long (same length and a pound less than Emerson). Thankfully, there was only 15 minutes of pushing because Malachi was stressed. He had the cord wrapped around his neck and was trying to come out while holding the cord in another place. He had to work very hard to try to take a breath on his own and he was quickly rushed to NICU within 5 minutes. I had a few complications of my own, but am currently feeling much better. Most importantly, we want this little guy to be able to breath on his own (he is currently intubated and was weaned from 100% oxygen down to 75%). As of right now they are not sure if it is a lung problem specifically or an airway anomaly of some sort that doesn't show up on a regular x-ray or imaging study like that. We will learn more tomorrow as more tests will be ordered at that time. So... meet Mr. Malachi.

Laying in his crib holding my hand.

Close up. You can see his ear is a little bit deformed as well.
Not sure if that will lead to anything or not.

Finally, holding John's finger.
(He squeezed three times--how we signal 'I love you')

For those of you praying for our family, THANK YOU! You have no idea how appreciative we are of your care and support for us Sharbaughs. I am falling asleep as I type here, I better try to get a little more comfortable. More will be updated as information becomes available.

Baby Chi has arrived

I will post more later, but here's some pics for the time being. He arrived at 7:28 pm weighing in at 7 lb 8.9 oz and measuring 21 inches long (same length and a pound less than Emerson). Thankfully, there was only 15 minutes of pushing because Malachi was stressed. He had the cord wrapped around his neck and was trying to come out while holding the cord in another place. He had to work very hard to try to take a breath on his own and he was quickly rushed to NICU within 5 minutes. I had a few complications of my own, but am currently feeling much better. Most importantly, we want this little guy to be able to breath on his own (he is currently intubated and was weaned from 100% oxygen down to 75%). As of right now they are not sure if it is a lung problem specifically or an airway anomaly of some sort that doesn't show up on a regular x-ray or imaging study like that. We will learn more tomorrow as more tests will be ordered at that time. So... meet Mr. Malachi.

Laying in his crib holding my hand.

Close up. You can see his ear is a little bit deformed as well.
Not sure if that will lead to anything or not.

Finally, holding John's finger.
(He squeezed three times--how we signal 'I love you')

For those of you praying for our family, THANK YOU! You have no idea how appreciative we are of your care and support for us Sharbaughs. I am falling asleep as I type here, I better try to get a little more comfortable. More will be updated as information becomes available.

making progress

Well, closing is in T-minus four days... FOUR DAYS!! The house is almost packed. I'm sure it just seems like there is more left to be done than what really is left to be accomplished. I was able to get some things done from the couch today, which at least helped me to feel productive. I canceled our home phone and signed up for DSL w/o phone at the new place; switched our auto insurance, canceled our homeowners insurance, and activated a renters policy; canceled most of our current utilities: water, electric, and gas; activated electric at new place; and updated address information at church, the post office, my work, car loan, and medical insurance. Unfortunately, I'm sure there is still plenty to do.

Wednesday is a pretty big day. We will be settling with paperwork and initial rent payment with the apartment complex. Also, the buyers have requested a final walk-through of the house. I'm assuming this is just to check that we haven't destroyed the place in the past month. We haven't, so we are prayerful that everything will continue as planned and we will close on the house Friday. Everything NEEDS to go through because we will be moving out of our house and into the apartment on Thursday as we are required to be ready to hand over the keys to the house at 3:00 on Friday at closing.

Lastly, I had my 37-week appointment today. I haven't progressed much, but my body is ready to do it's thing as soon as I start having some heavy contractions. Granted, I've been having contractions daily for two solid weeks now, so I could really go at any time. You could almost say I'm a ticking time bomb and I could go tonight or I could go two weeks from now. There are definitely pros and cons to both, so I suppose we'll just have to leave it in God's hands... On the other hand, if given the option to be induced, I might just have to jump on it. I like surprises, but I also like not being surprised with certain things. I would LOVE to know that I will make it to the hospital in time before the baby arrives... and John really does NOT want to be the one to deliver Mr. Malachi.

As I was going through my Bible reading yesterday, I was in Jeremiah 17. There were a few verses that definitely stood out to me. I would love to expound, but frankly I'm too tired and nauseated to sit here any longer. I will include them, however, if you would like to read them.

5 This is what the Lord says:
“Cursed are those who put their trust in mere humans,
who rely on human strength
and turn their hearts away from the Lord.
⁷ “But blessed are those who trust in the Lord
and have made the Lord their hope and confidence

⁹ “The human heart is the most deceitful of all things,
and desperately wicked.
Who really knows how bad it is?
¹⁰ But I, the Lord, search all hearts
and examine secret motives.
I give all people their due rewards,
according to what their actions deserve.”

making progress

Well, closing is in T-minus four days... FOUR DAYS!! The house is almost packed. I'm sure it just seems like there is more left to be done than what really is left to be accomplished. I was able to get some things done from the couch today, which at least helped me to feel productive. I canceled our home phone and signed up for DSL w/o phone at the new place; switched our auto insurance, canceled our homeowners insurance, and activated a renters policy; canceled most of our current utilities: water, electric, and gas; activated electric at new place; and updated address information at church, the post office, my work, car loan, and medical insurance. Unfortunately, I'm sure there is still plenty to do.

Wednesday is a pretty big day. We will be settling with paperwork and initial rent payment with the apartment complex. Also, the buyers have requested a final walk-through of the house. I'm assuming this is just to check that we haven't destroyed the place in the past month. We haven't, so we are prayerful that everything will continue as planned and we will close on the house Friday. Everything NEEDS to go through because we will be moving out of our house and into the apartment on Thursday as we are required to be ready to hand over the keys to the house at 3:00 on Friday at closing.

Lastly, I had my 37-week appointment today. I haven't progressed much, but my body is ready to do it's thing as soon as I start having some heavy contractions. Granted, I've been having contractions daily for two solid weeks now, so I could really go at any time. You could almost say I'm a ticking time bomb and I could go tonight or I could go two weeks from now. There are definitely pros and cons to both, so I suppose we'll just have to leave it in God's hands... On the other hand, if given the option to be induced, I might just have to jump on it. I like surprises, but I also like not being surprised with certain things. I would LOVE to know that I will make it to the hospital in time before the baby arrives... and John really does NOT want to be the one to deliver Mr. Malachi.

As I was going through my Bible reading yesterday, I was in Jeremiah 17. There were a few verses that definitely stood out to me. I would love to expound, but frankly I'm too tired and nauseated to sit here any longer. I will include them, however, if you would like to read them.

5 This is what the Lord says:
“Cursed are those who put their trust in mere humans,
who rely on human strength
and turn their hearts away from the Lord.
⁷ “But blessed are those who trust in the Lord
and have made the Lord their hope and confidence

⁹ “The human heart is the most deceitful of all things,
and desperately wicked.
Who really knows how bad it is?
¹⁰ But I, the Lord, search all hearts
and examine secret motives.
I give all people their due rewards,
according to what their actions deserve.”

Go Hawkeyes!

so the Hawks have been having a great season thus far and here's a quick video of Emma showing her team spirit!




(for those of you getting this via e-mail or facebook, please visit http://marissakayesharbaugh.blogspot.com to view video)

playing catch up

have you noticed by the number of posts that i've been trying to play catch up on this blog? well, let's just say i've been busy feeling super sick and trying to pack up this place so we're ready to move on thursday... really? thursday?!!?! wow, things are changing quickly! well, here is my post full of misc. extras to be (almost) completely caught up.

emma is getting MUCH better at using her eating utensils... here she shows of her skills by eating oatmeal all by herself. and she's just stinkin' cute!


She apparently also has little to no patience for being in her crib for any amount of time longer than necessary and feels the need to remove all things from her bed. This is how I found her room when i came in after naptime a few weeks ago. she didn't seem too worried about it.




and finally, with one month to go (hopefully less) here is what my belly looks like. there really is no more room for him to grow--at least my belly can stretch no further!

playing catch up

have you noticed by the number of posts that i've been trying to play catch up on this blog? well, let's just say i've been busy feeling super sick and trying to pack up this place so we're ready to move on thursday... really? thursday?!!?! wow, things are changing quickly! well, here is my post full of misc. extras to be (almost) completely caught up.

emma is getting MUCH better at using her eating utensils... here she shows of her skills by eating oatmeal all by herself. and she's just stinkin' cute!


She apparently also has little to no patience for being in her crib for any amount of time longer than necessary and feels the need to remove all things from her bed. This is how I found her room when i came in after naptime a few weeks ago. she didn't seem too worried about it.




and finally, with one month to go (hopefully less) here is what my belly looks like. there really is no more room for him to grow--at least my belly can stretch no further!

my husband's almost 30!

not quite, but he did just turn 27 in September. to celebrate his big day, we took a family trip to the zoo, looked at a bunch of apartments (sorry that weekend landed on your b-day, John), and then enjoyed some strawberry cupcakes with cream cheese frosting--yummy!!

emma on john's shoulders catching a glimpse of the polar bear.


john's favorite: the komodo dragons!


the animals were enjoying some family time, too. the elephants and giraffes each had little ones walking around.




one of emma's favorite places is just the pond filled with ducks who don't actually BELONG in the zoo. we got a cute video of her chasing around one such duck before it flew away from her craziness.


some more snuggle time with daddy. at this point, she had just ran and ran and ran around the splash park area and was FREEZING!! also, we hadn't been able to see the bears do anything besides sleep at our previous visits to the zoo.


and like i said, we finished the day with yummy cupcakes!!




HAPPY BIRTHDAY, JOHN!!

storytime at the library

a few times this month I was feeling well enough to take emerson to the library for story time. they said it's only for 3 to 5 year olds, but i figured they wouldn't turn us away and emma never had any problems. storytime consists of a few stories all centered around a particular theme chosen by the librarian as well as a craft to go with that theme... here are some photos of of emma with her craft.



here's a closer look. as you can see, all the stories that day revolved around the farm. i wrote on each animal the noise that emerson makes for it (oink-oink and cock-a-doo).



and, lastly, i'm glad i took a picture when i did because ten minutes later this is what her craft looked like.



if i hadn't seen her do it, i probably would have blamed the dog. sorry, belle.

a taste of china

well, a very, very , VERY little taste...

a while back we went to an Asian-American expo on the campus of IUPUI. Here was a little glimpse at what we saw.







and then we finished the afternoon off with a nice little get together with some friends of ours FROM China who currently scientists at IUPUI and their two little ones. (this is teri and tiebing with all the little ones)

currently reading: liberated through submission

So I meant to write about this book when I finished it almost a week ago. Unfortunately, that did not seem to happen. Instead, I can only touch on a couple basic ideas that I took from the book and impacted me in one way or another.

One particular idea is that submission is not just action-based. One can easily "submit" to the authorities in their life in an outward, action-based way WITHOUT truly submitting with their mind and heart. I was convicted because I know there are many times in my life where I have submitted to parents, coaches, teachers, and my husband outwardly. I followed through in an ACT of obedience, but I was sinning and disobedient with my thoughts and attitude toward the situation. Not only is this something that I need to correct for the sake of my well-being, but I want to be able to display the right heart attitude as a model for my daughter to take after.

Also, submission is for everyone... We all answer to a higher authority, whether it be earthly or heavenly, whether we are male or female, whether we are married or single. For some reason, our Christian circles tend to come to the conclusion that submission is only for married women. Not true. "We have conformed to the world's concept, accepting its views. We have become all-too-comfortable, costuming ourselves and acting out roles that God never intended for us."

For those wives who complain and lament the fact that they are required by God to submit to their husbands, this might put things in perspective. Yes, Scripture says, "Wives, submit yourselves unto your own husbands as unto the Lord." BUT Scripture also gives the following responsibilities to married men:
1. Be the head (final decision maker) of the wife.
2. Love your wife.
3. Be the spiritual leader of the home.
4. Live with your wife according to understanding (understanding why and how God made her).
No pressure, guys! We women should be thankful that submission is our only direct command in regard to our marriage relationship.

I am definitely learning that submission does not happen overnight, nor can it take place of my own volition. By the grace of God and His enabling, I pray that I can continue to strengthen and stretch my submission muscles in order to be the Christian, wife, and mother that God has called me to be.

learning to trust

whether it be trusting God or trusting my husband, i definitely have NOT arrived... and due to the fact that i'm ready to have this kid any day now there are many things that i canNOT take care of in regard to the upcoming weeks. i need to be able to just let my husband take care of the things which he has committed to do for my sake and well-being during the last bit of this pregnancy.

physically, there is only so much i can do when it comes to sorting and packing and unpacking and sorting and organizing. my days are spent chasing and caring for and feeding emerson, and i spend most nights sick and laying on the couch going to bed early. not to mention all of the jabs and kicks i've been getting from within!

mentally, i'm a forgetful, incoherent mess (so, apologies if none of this makes sense). not only am i overthinking all of the things on my "to-do" list that i can remember, but i'm also fretting about the things which i've assumed i've forgotten. i think my subconscious has also added about a bazillion things on my imaginary to-do list and i've been overwhelmed knowing that i could never accomplish all of these things that i've conjured up. i also need to get the picture out of my head that we will be bringing baby boy home to this nice, neat, organized apartment. i need to understand that it's not going to happen, and frankly, i need to be okay with that.

spiritually, i'm feeling very prideful. my human nature does NOT want to ask for help. i WANT to be able to do all of this stuff on my own and i want to do it right--even though i don't have a clue on how to do this moving thing. you'd think i would have gathered some sort of idea by now, i mean we did this two years ago with like three successive moves, but alas, all has been forgotten.

i'm sure that there is much more that i could add to each section of this post, but i'm sleepy and we have church in the morning. hopefully, i will be able to make it through sunday school and the service. last week we left early due to sickness and uncomfortableness (blech) i'm ready to be a faithful attender once again. however, i do not believe that will be the case until baby chi is a few months old and i have at least begun to figure him out. it took at LEAST three months until i felt comfortable with taking care of emerson, so we'll see how it goes!

learning to trust

whether it be trusting God or trusting my husband, i definitely have NOT arrived... and due to the fact that i'm ready to have this kid any day now there are many things that i canNOT take care of in regard to the upcoming weeks. i need to be able to just let my husband take care of the things which he has committed to do for my sake and well-being during the last bit of this pregnancy.

physically, there is only so much i can do when it comes to sorting and packing and unpacking and sorting and organizing. my days are spent chasing and caring for and feeding emerson, and i spend most nights sick and laying on the couch going to bed early. not to mention all of the jabs and kicks i've been getting from within!

mentally, i'm a forgetful, incoherent mess (so, apologies if none of this makes sense). not only am i overthinking all of the things on my "to-do" list that i can remember, but i'm also fretting about the things which i've assumed i've forgotten. i think my subconscious has also added about a bazillion things on my imaginary to-do list and i've been overwhelmed knowing that i could never accomplish all of these things that i've conjured up. i also need to get the picture out of my head that we will be bringing baby boy home to this nice, neat, organized apartment. i need to understand that it's not going to happen, and frankly, i need to be okay with that.

spiritually, i'm feeling very prideful. my human nature does NOT want to ask for help. i WANT to be able to do all of this stuff on my own and i want to do it right--even though i don't have a clue on how to do this moving thing. you'd think i would have gathered some sort of idea by now, i mean we did this two years ago with like three successive moves, but alas, all has been forgotten.

i'm sure that there is much more that i could add to each section of this post, but i'm sleepy and we have church in the morning. hopefully, i will be able to make it through sunday school and the service. last week we left early due to sickness and uncomfortableness (blech) i'm ready to be a faithful attender once again. however, i do not believe that will be the case until baby chi is a few months old and i have at least begun to figure him out. it took at LEAST three months until i felt comfortable with taking care of emerson, so we'll see how it goes!