Moving...

So after much prayer and consideration we have decided to move to Columbus, Ohio. Philip had applied to several jobs in Ohio and Erie. His interview went very well in Columbus, but we left everything up to the Lord. We had prayed that if the Lord allowed Philip to get the job in Columbus, we would make the decision to move there. Philip received a phone call just as Malachi was being admitted to the hospital offering him a position at Nationwide Children's Hospital in Columbus. We realized (on our long drive home on the previous Monday) that moving to Columbus would be the best decision for our family. We liked the idea of a Children's Hospital being only 20 minutes away, as opposed to two hours! So he accepted the position as an Operating Room Support Assistant. He will be working second shift and plans to further his EMT certification to a nursing degree.

It was a VERY hard decision to leave family and friends in Erie, but we had such a peace knowing it was what God had laid out for us. After a LONG week stay in Pittsburgh, we felt that we may as well make the move to Columbus in transferring Malachi to Nationwide Children's. Walking into a private room with its own shower was enough to make me cry! It was like staying at the Hilton compared to our stay in Pittsburgh!

We will always be grateful for the staff in Pittsburgh, but we are thankful that there is just as great a hospital in Columbus much closer to family.

Malalchi is still in the hospital. He is doing great! If he wasn't needing his stomach surgery we would have gone home a long time ago. He is currently undergoing a reflux study. They are trying to determine if he really needs to have his stomach muscle tightened. Dr. Teske (Malachi's new Cardiologist) told us that they will discuss with the GI doctor to come up with some type of plan for Malachi. We hope to know something in the next day or so. Malachi will also have a CT Scan done to look at his vessels in his lungs to make sure there aren't any post-op clots. They have decided to not put him through a Cath, since his saturations have improved and he is no longer requiring any oxygen.

More waiting, but we are thankful that Malachi is doing so well. He babbles and smiles and kicks his chubby little legs! We celebrated Easter and he didn't let his Grandpa Langdon get a word in while he prayed! We hope we can get home soon. We love you all and look forward to seeing you soon! Please come and see us! Malachi LOVES visitors!

Thankful,
April for all three!
Philippians 4:11

Back in Pittsburgh...

On Monday, March 10th we had brought Malachi into the Emergency Room because he still was fussy and had spit up. He had a doctor's appointment on Wednesday, March 12th. He was desaturating in the office, so they decided to keep him in the hospital to determine what could be going on. He had a chest x-ray, an echo, and flouro to look at his lungs. Nothing appears to show anything is wrong with his heart. The doctor seems to think that Malachi might have aspirated something into his lungs when he spit up, that could have caused his lungs to be irritated, and caused the desaturations. They are going to schedule his G-tube and Stomach tightening since we are here. Before they can do the surgery they need to wait until he is "holding his own" with his sats. Malachi is doing well considering. He seems to be more content and is resting comfortably. Thank you all for your prayers and we'll try to keep you posted as much as possible.

Love you all!
April (for all three)

Romans 8:28

Malachi is on the Mend...

Malachi went in for surgery February 22, 2008, at 7:45 am. The surgery was supposed to take about three and a half hours. At about four hours we started to pace the floor waiting for Dr. Wearden to arrive to tell us how it went. We went through all kind of thoughts: Is Malachi alright? Did he have any complications? Is Dr. Wearden going to walk around the corner and tell us the worst? I thought about one of the songs that Ikiru sings: "Only Spare His Life." There is a line that they quote from Job Chapter Two that states: "Can we take the good from the hand of God, and not except the bad?" I kept thinking are we going to have to accept the bad? Philip and I sat there together just praying and choosing over and over to trust God's plan and accept whatever was coming. Sure enough about five hours of waiting, Dr. Wearden came around the corner. He saw us and said right away, "he is doing fine." I collapsed into Philip so relieved, and we went in to talk in a consult room. Dr. Wearden told us that Malachi had a lot of scar tissue and that his sternum hadn't completely healed very well. This added time onto the surgery. He said that the Glenn part of the surgery went great. The issue they had before they even got started was that when the anesthesiologist was putting a line in Malachi's neck the guide wire interrupted his electrical pulse and his heart started to beat out of rhythm. His heart rate dropped down to 60 bpm. He said they had to move quickly. Everything turned out well, but they were using a pace maker to help bring his heart rate up to 130 bpm instead of 70 bpm. He said the other unexpected thing was that they couldn't completely ligate (tie off) his Pulmonary Artery and it was possible that they would need to adjust the band on it, so they had left his chest open.

All I kept hearing was, "Malachi's heart rate dropped and he is on a pace maker." It was very overwhelming. We went in to see him and he looked pretty good considering. I cried when I saw him mostly because just the day before he was playing and "talking" to us. Now he was sedated and not moving around. It was really sad to see. (I keep telling myself that he is going to get better.) While in the CICU the doctor came in and told us that Malachi was doing well. He showed us the pace maker and said that it isn't uncommon for babies to come back from surgery on it. He was on the pace maker for a couple of hours and the doctor started to manipulate the pacer, just to see Malachi's rate, and his heart started to beat on its own. It was quite a miracle to see. It was so amazing to see the hand of God come down and touch Malachi's heart and make it start beating on its own. It was such a realization that the Lord truly makes our hearts beat and holds them in His hand. Malachi continued to do well and Dr. Wearden and Dr. Morrell rounded and said that they were going to close his chest up the next day, February, 23rd. He did great all through the night and recovered well.

Today Dr. Morrell closed up his chest. He didn't need to adjust the band on his Pulmonary Artery, they left it on as tight as it is. It will get tighter as Malachi grows, but it is alright, because they will completely close off the artery for the Fontan, (his last surgery.) The closing went well, and they turned off the paralytic. He started moving around and was getting a little too active, so they had to give him a little sedation. They plan is to wean him off the vent overnight and extubate him tomorrow morning.

We didn't post any pictures of him for now because he looks pretty bad. He will get better the more he heals, but right now is a little puffy. He is doing well and we are so thankful that the Lord has brought him through so much. I can't wait for him to keep getting better. He will be like himself again and feeling so much better.

Thank you all so much for praying for him yesterday and continuing to pray for him. He is such a tough little guy! We look forward to getting him well and holding him soon! We love you all!

Love,
April, Philip, and Malachi

Job 1:2:10b

Surgery Scheduled...

Malachi's next surgery, "The Glenn" is scheduled for Friday, February 22nd. The surgery will entail routing the Superior Vena Cava (the artery that brings blood to the heart from the upper portion of the body) directly to the lungs, via the Pulmonary artery. They may or may not close of the Pulmonary artery from the heart depending on whether or not it needs to grow. They will go in and remove the rest of the atrial septal wall (the portion between the top two chambers of his heart). This part of the surgery requires him to be put on the heart/lung bypass machine. This machine basically pumps blood through his body while they do the repairs to the heart. The risk of the surgery has minor ones, but they are still there. Although his last surgery was pretty serious, this one seems a little more detailed. We are confident that the Lord will continue to guide Malachi's life and bring him through once more.

Please be in prayer for the surgical team: the surgeons: Dr. Wearden and Dr. Morrell, nurse practioners: Erin, Kristin, Dana, and Joann. Also pray for all the team in the Cardiac ICU unit. Dr. Wearden told us that he would be more than willing to pray with us again before the surgery and said he would every Monday if we wanted! We really feel quite a ministry opportunity with him. He is a really neat man, and we have let him know just how many people have been praying for him and the rest of the team. It is so great to see how the Lord works.

The Surgical team stated that after he has this next operation they will only need to see Malachi once every so often. (Which shows you how stable he will be.) We have also heard that their health improves: they have more energy and seem to "feel" better. Which is so great to hear in itself.

It has been such an up and downhill journey for us. We are so thankful for a God who has always proved Himself faithful every moment of this journey.

Thank you all again and again for your prayers and support of us! May the Lord reward you greatly for your kindness and hand in so many ways!

We love you all!

Love,
Philip, April, and Malachi

Psalm 34:18

The Latest...

Malachi turned three months old yesterday, February 2nd. He is certainly growing. He is up to 7 lbs 13 oz! To let you know the latest on us...

We came down for a routine appointment for Malachi on Tuesday, January 22nd. Dr. Wearden was concerned about Malachi's cold and his saturations dropping at night and the new need for oxygen. They admitted him to the hospital that night, which we were completely unprepared for! We have been in Pittsburgh since. Malachi had a Lung Profusion scan (to measure lung pressure) on Wednesday, January 23rd. The test showed some difference in his lungs, but Dr. Wearden felt that a Catheterization would show the best pressure.

Malachi went in for the Cath on Thursday, January 24th. They found that his band has tightened. The blood flow to his lungs is getting more restricted, so that explains the need for more oxygen when he is sleeping.

After a long stay in the CICU, (because there were no beds upstairs),the Board (consisting of the Surgeons, Cardiologists, and CICU Doctors) all got together to discuss the best plan for Malachi. They decided that they wanted to monitor Malachi for the next two weeks see him gain weight and do the Glenn, which is his next surgery. (Routing the Superior Vena Cava Artery directly into his lungs.) We are staying at the Children's Home. It is a nice facility, but it is not home. Dr. Wearden would have sent us home, but he was uncomfortable with us living so far away.

Malachi has an appointment this Wednesday, February 6th, with the Surgery team. If he keeps gaining and looking good, they will schedule another appointment next week with the Cardiology team for the following week. After that appointment, they will begin to discuss the scheduling of his next surgery.

Please be praying that Malachi keeps growing and that the band will not get any tighter before the surgery is done. It is hard to not be home, but we are glad that things are moving towards getting Malachi's heart repaired. We will let you know when we hear anything new.

Thank you all for your prayers. May the Lord be glorified!

Love,
Philip, April, and Malachi

Philippians 4:4

We are Home!!!

Malachi was discharged from Children's on December 22, 2007. We got home just in time for Christmas. He is doing really well. We have had to juggle the new life of around the clock meds, continuous feeds, diaper changes, sleeping patterns, and weekly visits to Pittsburgh. We are so thankful to be home. Malachi is much more relaxed and is gaining weight and growing more everyday. We have so much to be thankful for. What a blessing to be home to celebrate our Savior's birth and rejoicing in our son's life and first Christmas at home. Thank you all for your prayers. Thank you for your support. Thank you for your gifts. Thank you for your encouragment. Thank you for your love! Malachi's next surgery will be around three or four months of age. (He just turned two months old on the 2nd!)

We love you all, and rejoice in our great God's provision in so many ways!

Love,
Philip, April, and Malachi

Philippians 4:4

Sorry it has been so long!

We apologize for not updating for quite some time. A LOT has taken place since we last posted. As of now Malachi is doing well. To recap the last several weeks...

Malachi was sent up to the floor the day after Thanksgiving and was doing okay. He was still breathing fast, but we thought it was normal for him. He started on feeds and the staff attempted to try larger feeds at one time. This was too much for Malachi's tummy and he began to spit up and reflux. (He was showing major heaving when spitting up, and he cried after he spit up.) They did an Upper G.I. test (having him swallow barium and seeing if it comes back up.) That test showed that he did have acid reflux. They put in an NJ tube (goes from the nose to the beginning of his small intestine) to help with his reflux. The goal is to get him to gain weight so that he is bigger for his next surgery in two or three months. Everything was going well until his saturations began to drop into the 60's. He eventually was placed back on oxygen to help raise his saturations. Malachi had also become fussy and not consolable for about three days. We were impatiently waiting to go home, wondering why God had kept us here for so long.

He answered our prayers Monday morning, December 10th. I had got out of bed after Malachi had a long night of fussiness. I stood there by his bed trying to comfort him, and prayed that he would feel better. I asked the Lord, "I know you love him, but why are you allowing him to continue to hurt?" (Thinking that he had developed Colic.) I started to cry as he calmed down for about a minute and then he began to cry again. I picked him up and held him in my arms to try once again to console him. I suddenly realized that he felt very warm, his heart rate was very high, and he was breathing very fast. I called for Philip to come over and see what he thought. He took Malachi's temperature and it was 102! We called for the nurse and she came in and took his temp and found it to be the same. We were unwrapping him and getting him undressed to cool him down. I commented about his grunting, thinking he was trying to have a bowel movement. The nurse said that it was a sign of respiratory distress. Just then the surgeon, Dr. Morrell was doing rounds and came in the room. He looked right at Malachi's breathing and said to get him down the CICU. They quickly gathered his things and rushed him down. We thought they would just help his fever and all would be better. When we arrived down stairs the doctor told us that they had decided to intubate him. He said that Malachi was showing signs of what could potentially become a very bad respiratory problem. We were a little shocked, but relieved they had caught things before they got worse. It was determined that his hole between his Atria was beginning to close and was causing blood to back up in his lungs. The solution to try was to take him down to the Cath Lab and punch a hold through the wall.

Tuesday, December 11th, Malachi went in to the Cath Lab for his procedure. Dr. Kritchure (spell?) prayed with us before the procedure. It took about two hours. She came out and told us that Malachi did very well. She said that they used the balloon procedure and it worked very successfully. The hole made a huge difference in the pressures. We also found out that they were concerned about the Pulmonary Band and whether or not it was tight enough. Dr. Wearden (another surgeon) told us that he didn't think that there were any problems with the band. He wanted to avoid taking him back in for surgery.

Now we have graduated back up to the Seventh Floor. Malachi is doing well, except for a few adjustments to his medications. Dr. Wearden told us today that all he is waiting on is for Malachi to gain weight and it looks like we could be going home the end of this week. Please pray that it happens! We would LOVE to be home in time for Christmas.

This part of the journey has taught us a lot. It is so hard to stand back and watch your beautiful baby boy go through so much. To be on so many meds, to be intubated more than once, to have his feet poked to get a reading for his sugar, and to see his reach out to you while all this is taking place. I know that we have asked the Lord why quite a bit. We have read Gene Cunningham's Psalm 119 study and been humbled by the praise that young captive gave to God in the midst of horrible, unthinkable circumstances. We have listened to parts of Gene's study on James and cried through most of it knowing that the Lord was talking right to us. The phrase that always sticks in my mind is: "not asking why, but what." What can we learn from all of this. What is it that the Lord is wanting to teach us. How can we glorify and enjoy (crazy thought!) what He is doing in our lives through this trial. What can we see Him doing through it all. How can we honor and praise our Great God for having a plan for us and being in control. I will not pretend that I sailed through this easily and didn't get extremely mad and very close to just giving up, but one day it just hit me. I can get angry and doubt what God is doing, or I can hold on for the ride and wait it out to see the blessings He has in store. It almost always gets harder before it gets easier, but in the end God shows Himself in amazing ways. I feel honored that He would allow us to go through all of this. That He would give us this opportunity to "pass the test" and be able to present Him with our rewards, and anoint His feet with the tears we have shed. We are not through anything yet, and I think this will be a lifelong journey, but God has never left and always been faithful. May we live our lives proclaiming, as Malachi's name means as: "Messengers of the Lord."

Thank you all for your encouragement and prayers for us. WE SO NEED THEM! We love you all.

Safe in His Arms,
April (for all three!)

James 1