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.